Hey all!
I wish I could have participated live in this one, since it relates directly to my last post! I have some decisions to make about new medication. Here's tonight's ChatMS from twitter!
Feel free to copy/paste the questions to your own blog - and keep the conversation going!
...
Q1 - We will dive into details shortly, but have you experienced any negative side effects due to an MS treatment?
Not a DMD (disease modifying drug), but I have had many side effects from acute treatment such as steroids. Solu-Medrol gave me the usual (headache, altered taste, altered textures from food, slight nausea, fatigue during the day and insomnia at night), but I also had strange side effects on an oral steroid in conjunction with Solu Medrol (heart palpitations days later) and a couple from Acthar (tense muscles).
Q2 – Some have answered, but There are 13 FDA approved treatments now.
Which treatment(s) caused the worst side effects for you?
I had absolutely none on Gilenya. I really loved Gilenya. I hope I can get back on it. Worse was Solu Medrol.
Q3 – What would you say your worst side effect was? How did you get past it?
Just... had to breathe through it. I thought I had no choice. Now I'm not so sure, since not only did the steroids make me feel like shit, but they seemed to do exactly shit for me.
Q4 – Have you purposely avoided selecting a treatment due to its potential side effects? If so, which one and why?
Yes. First, Tysabri because I am JC Virus positive and don't want to get PML, and Tecfidera next because of the flushing and nausea. I was steered away from interferons because of the depression risk - now I've heard they cause flu-like symptoms and that is a big no-no. I am afraid my doc will want to steer me away from Gilenya because it isn't a "heavy hitter" and because it's a pain for them to get me started on it... I think it's worth sitting in their office for six hours, personally.
Q5 – Have you ever stopped a treatment because of the side effects experienced? If so, which one and why?
Nah, none here.
Q6 – When asking your neuro about side effects, did they offer assistance or just explain to you that “its normal”?
Yup. Was pretty much told that any side effects I experienced...well, it's just the way it is. I got the impression they thought I was a baby for not wanting to go on Tecfidera just for the nausea factor.
Q7 – For those who stayed on a medication despite side effects, did you find they went away over time?
I hope this is true. Still looking for more answers - so if you're on a drug with heavy side effects, I would really appreciate your input here!
Q8 - What tips or advice would you offer to MSers in regards to starting a medication that may have severe side effects?
Do your research... you can trust your neuro, but also trust your gut. If you really feel that the side effects would be worse than what MS would do to you, then re-evaluate and don't give up!
I certainly hope I can follow my own advice when it comes to this later this month!
Love all, MSloan
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Monday, April 4, 2016
Saturday, March 26, 2016
Finally.... A Plan!
I finally got through to my neurologist!
We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options. He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time. I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.
Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no. It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further. While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:
His name is Dufresne, and I painted him on Sunday. So I haven't completely lost my ability to make good art, and that's comforting. It definitely wasn't the same, and painting on the black background certainly made it easier. I'll have to re-teach myself to paint on light. Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it. I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours. I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!
Well, here's hoping that I won't have any active lesions when we take a look in April/May. Fingers crossed!
Love, MSloan
We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options. He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time. I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.
Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no. It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further. While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:
His name is Dufresne, and I painted him on Sunday. So I haven't completely lost my ability to make good art, and that's comforting. It definitely wasn't the same, and painting on the black background certainly made it easier. I'll have to re-teach myself to paint on light. Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it. I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours. I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!
Well, here's hoping that I won't have any active lesions when we take a look in April/May. Fingers crossed!
Love, MSloan
Monday, March 21, 2016
ChatMS 3/21/2016
Hey all!
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
Monday, February 29, 2016
Coming Out of the MS Closet
Tonight, I finally did it. I finally just bit the bullet and stopped beating around the bush. I let it be known that I had Multiple Sclerosis to my friends on Facebook - which is scarier than it seems.
This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS. No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!
Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick, all the time. I started to struggle to see the tv screen, and I had nearly constant headaches. In January 2010, I started to have daily nausea, a symptom that debilitated me and made me constantly paranoid that I would get sick in class. I got glasses and changed my birth control. I changed my diet and carried pepto bismol tablets with me everywhere I went. Nothing changed the nausea. It got so bad, I saw a movie with my friend and I made her sit in the theatre with me for about fifteen minutes before I felt well enough to stand up to leave. I once had to call Steve to come rescue me from the Safeway five blocks from our apartment because I literally could not stand up any longer, and I abandoned my cart in the pharmacy and hustled to my car.
It was a scary six months. But at the end of the semester, I felt better. I had cycles like this one intermittently for the next few years, rearing their ugly head again most noticeably in November of 2013. I had avoided the problem, and avoided telling anyone I knew what I was feeling, for fear that i would be told it was "all in my head," or that I was "just stressed."
Two years ago, on February 26th of 2014, I woke up and could not feel the left side of my body, nor could I feel my right foot. I tried to ignore it. Later that night, I called an old friend and texted my sister, and was told it was probably nothing, which was the response I got from the few people I told that day. But I knew what was wrong. I had known since that time that I call, "when I got sick," those early months of 2010 when I couldn't ignore my symptoms any more, and went from doctor to doctor, learning nothing, until my symptoms went away on their own.
I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.
Since that time, I have had symptoms that have come and gone, some that have stayed, and some that only arise when I get stressed. I have lost vision, I have lost words, I have had dizziness and now have constant tinnitus. I have had days when I could not get out of bed. I have had weeks where whenever I leaned over, I had an electric shock go down my spine, every single time. I was told my illness would subside while I was pregnant - it has not. You can't see my illness, but it is very, very real to me.
People always share "Save the Ta-Tas," and say that Cancer awareness is an important cause. While I absolutely support awareness of various cancers and illnesses, from autism to seizures to ataxia, Multiple Sclerosis is a largely ignored disease because of its invisible nature. You can't always tell when someone has MS. Did you know that many of the people that you scoff at for parking in the Handicap spaces struggle with MS, and it takes their every breath to walk just to the door? That they might not be able to feel their feet, or their legs, or their hips? That they might have a suffocating squeeze around their abdomen, a symptom inappropriately called the "MS Hug," which could bring them to their knees at any minute?
March is Multiple Sclerosis Awareness and Education Month. I ask that you do one thing - if you have a question about my MS, ask me. Don't make assumptions, and don't google it. Just ask me. Because the more people who are touched personally by this disease, the better the world will be - because awareness brings research, it brings discussion, it WILL bring a cure.
Wear ORANGE!
This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS. No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!
Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick, all the time. I started to struggle to see the tv screen, and I had nearly constant headaches. In January 2010, I started to have daily nausea, a symptom that debilitated me and made me constantly paranoid that I would get sick in class. I got glasses and changed my birth control. I changed my diet and carried pepto bismol tablets with me everywhere I went. Nothing changed the nausea. It got so bad, I saw a movie with my friend and I made her sit in the theatre with me for about fifteen minutes before I felt well enough to stand up to leave. I once had to call Steve to come rescue me from the Safeway five blocks from our apartment because I literally could not stand up any longer, and I abandoned my cart in the pharmacy and hustled to my car.
It was a scary six months. But at the end of the semester, I felt better. I had cycles like this one intermittently for the next few years, rearing their ugly head again most noticeably in November of 2013. I had avoided the problem, and avoided telling anyone I knew what I was feeling, for fear that i would be told it was "all in my head," or that I was "just stressed."
Two years ago, on February 26th of 2014, I woke up and could not feel the left side of my body, nor could I feel my right foot. I tried to ignore it. Later that night, I called an old friend and texted my sister, and was told it was probably nothing, which was the response I got from the few people I told that day. But I knew what was wrong. I had known since that time that I call, "when I got sick," those early months of 2010 when I couldn't ignore my symptoms any more, and went from doctor to doctor, learning nothing, until my symptoms went away on their own.
I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.
Since that time, I have had symptoms that have come and gone, some that have stayed, and some that only arise when I get stressed. I have lost vision, I have lost words, I have had dizziness and now have constant tinnitus. I have had days when I could not get out of bed. I have had weeks where whenever I leaned over, I had an electric shock go down my spine, every single time. I was told my illness would subside while I was pregnant - it has not. You can't see my illness, but it is very, very real to me.
People always share "Save the Ta-Tas," and say that Cancer awareness is an important cause. While I absolutely support awareness of various cancers and illnesses, from autism to seizures to ataxia, Multiple Sclerosis is a largely ignored disease because of its invisible nature. You can't always tell when someone has MS. Did you know that many of the people that you scoff at for parking in the Handicap spaces struggle with MS, and it takes their every breath to walk just to the door? That they might not be able to feel their feet, or their legs, or their hips? That they might have a suffocating squeeze around their abdomen, a symptom inappropriately called the "MS Hug," which could bring them to their knees at any minute?
March is Multiple Sclerosis Awareness and Education Month. I ask that you do one thing - if you have a question about my MS, ask me. Don't make assumptions, and don't google it. Just ask me. Because the more people who are touched personally by this disease, the better the world will be - because awareness brings research, it brings discussion, it WILL bring a cure.
Wear ORANGE!
Saturday, February 27, 2016
Two Years Is Not Very Long
Good morning readers,
Today marks 2 years to the day that I woke up and could not feel my left leg. Technically, yesterday was, but this marks the day that I really 'knew' what was going on. I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.
Something was wrong ... and I knew instantly that it was MS. I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty. I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion. I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on. It was a sad and oddly supportive time. I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait.
Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened). I had Multiple Sclerosis. I read the report describing several 'foci of restricted diffusion,' the title of this blog.
Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child. I am 32 weeks along and she is kicking away today. I am just as scared as I was two years ago, but for entirely different reasons. I have a new reason to be excited for the month of March, and it isn't job interviews and trips. It's getting ready for my Tesla.
I wish I could say that in these last two years that I have really learned a lot. I have, but so much of it has been negative that I choose to try and focus on other things. My mother has declined into a complete state of paranoia, frequently. I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot. Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.
Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband. It's a lot of things to take in!
Love to all, MSloan
Today marks 2 years to the day that I woke up and could not feel my left leg. Technically, yesterday was, but this marks the day that I really 'knew' what was going on. I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.
Something was wrong ... and I knew instantly that it was MS. I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty. I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion. I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on. It was a sad and oddly supportive time. I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait.
Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened). I had Multiple Sclerosis. I read the report describing several 'foci of restricted diffusion,' the title of this blog.
Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child. I am 32 weeks along and she is kicking away today. I am just as scared as I was two years ago, but for entirely different reasons. I have a new reason to be excited for the month of March, and it isn't job interviews and trips. It's getting ready for my Tesla.
I wish I could say that in these last two years that I have really learned a lot. I have, but so much of it has been negative that I choose to try and focus on other things. My mother has declined into a complete state of paranoia, frequently. I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot. Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.
Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband. It's a lot of things to take in!
Love to all, MSloan
Monday, February 22, 2016
ChatMS - 2/22/2016
Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were! (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank... I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank... I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Monday, February 8, 2016
ChatMS 2/8/2016
This week's ChatMS was all about relapse triggers - something I have learned a lot about. Remember to cut/paste the questions to put on your own outreach, and spread the word!
Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)
This is an excellent question. Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning. It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them. I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.
Q2 – What have you found that supports your theory?
See above - where I grew up debunks some of the theories about Vitamin D. But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early. I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.
Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?
Stress is the number 1, number 2, and number 3. Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense. The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way. My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned. Right before this, my left side failed. I had to cancel the first trip and, therefore, the first job interview. I lied about the rest. In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities. None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.
Q4 – What have you done to avoid these triggers?
Honestly? In my case, it was moving away from my mother. She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares. When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones. I have yet to meet many people who have failed the treatment like I did. Not a coincidence that my mother was more present in my life that month because of my diagnosis. It is very important that I am aware of her effect on me.
Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)
I am about a 4. I'm pregnant, what can I say? :)
Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are?
I'm about a 2. Heat absolutely effects me. I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me. I have always been heat sensitive, even as a kid. When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs. Very disconcerting and I worry about falling and hurting others.
Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?
HA! Does anyone's neurologist really care that much? My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.
Q8 – What tips would you give to others to try and stay clear of possible triggers?
Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger. I didn't want to get away from my mother as badly as I really needed to. She raises my blood pressure and gives me so much upset. If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much. I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs. It is hard at first to eliminate triggers, but is well worth it. Good luck!
That's a wrap, all! Thanks for reading! - MSloan
Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)
This is an excellent question. Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning. It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them. I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.
Q2 – What have you found that supports your theory?
See above - where I grew up debunks some of the theories about Vitamin D. But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early. I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.
Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?
Stress is the number 1, number 2, and number 3. Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense. The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way. My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned. Right before this, my left side failed. I had to cancel the first trip and, therefore, the first job interview. I lied about the rest. In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities. None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.
Q4 – What have you done to avoid these triggers?
Honestly? In my case, it was moving away from my mother. She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares. When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones. I have yet to meet many people who have failed the treatment like I did. Not a coincidence that my mother was more present in my life that month because of my diagnosis. It is very important that I am aware of her effect on me.
Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)
I am about a 4. I'm pregnant, what can I say? :)
Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are?
I'm about a 2. Heat absolutely effects me. I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me. I have always been heat sensitive, even as a kid. When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs. Very disconcerting and I worry about falling and hurting others.
Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?
HA! Does anyone's neurologist really care that much? My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.
Q8 – What tips would you give to others to try and stay clear of possible triggers?
Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger. I didn't want to get away from my mother as badly as I really needed to. She raises my blood pressure and gives me so much upset. If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much. I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs. It is hard at first to eliminate triggers, but is well worth it. Good luck!
That's a wrap, all! Thanks for reading! - MSloan
Monday, January 25, 2016
ChatMS - 1/25/2016
This week's Chat MS was just about the new year. I'm ready for a new start, aren't you?
Don't forget to copy/paste to your own blog, and keep the conversation going!
Q1 – How is life in 2016 treating you so far?
It's going ok. I'm excited for my baby to come in April. I'm struggling with my mother. I'm struggling a little at my workplace. But in general, things are overall good!
Q2 – Did you make any MS related New Year’s Resolutions? If so, care to share?
Yes and no. I don't really have New Year's Resolutions - I have themes. My theme for this year is Acceptance - because there are some things in my life that I truly cannot change, but I can accept that there will be challenges, and I will learn to overcome them. I guess this does heavily tie into my MS as well as many other things.
Q3 – We are 4 weeks into 2016. Have you made good on your resolutions so far?
I think so!
Q5 – Do you think 2016 will bring more awareness for MS? If so, in what ways?
There is always hope for that - there are already stories of more celebrities with the condition, but I think that because it is still largely an invisible disease, we have a very long way to go for real 'awareness.' People need to understand that no two cases are the same. I hate being told "oh, so and so who I've known for many years has MS and is just fine..." I appreciate that you're trying to make me feel better, but really you're just trying to make YOU feel better because my predicament makes you uncomfortable. It's ok to face the negative possibilities, too, and not view the disease under rose-colored glasses. It doesn't make the problems go away.
Q6 – What are you looking forward to the most in 2016 when it comes to MS? (Specific research, treatment, etc.)
My baby is the biggest thing on my mind. After she arrives, I will be able to focus on what's new!
Q7 – Don’t change your goals, change the way to achieve them. What is your biggest “Bucket list” item despite having MS?
Well my biggest goal in life is to be a rock star. Always has been, always will be :)
https://soundcloud.com/margo_sloan
Q8: Is there a particular symptom you'd like to discuss? What topics would you like to cover in the future?
I really would like to talk about MS Hugs, people who have failed steroid treatments, flares during pregnancy, other atypical experiences. Lhermitte's sign, and dealing with people around them.
Love to you all! - MSloan
Don't forget to copy/paste to your own blog, and keep the conversation going!
Q1 – How is life in 2016 treating you so far?
It's going ok. I'm excited for my baby to come in April. I'm struggling with my mother. I'm struggling a little at my workplace. But in general, things are overall good!
Q2 – Did you make any MS related New Year’s Resolutions? If so, care to share?
Yes and no. I don't really have New Year's Resolutions - I have themes. My theme for this year is Acceptance - because there are some things in my life that I truly cannot change, but I can accept that there will be challenges, and I will learn to overcome them. I guess this does heavily tie into my MS as well as many other things.
Q3 – We are 4 weeks into 2016. Have you made good on your resolutions so far?
I think so!
Q5 – Do you think 2016 will bring more awareness for MS? If so, in what ways?
There is always hope for that - there are already stories of more celebrities with the condition, but I think that because it is still largely an invisible disease, we have a very long way to go for real 'awareness.' People need to understand that no two cases are the same. I hate being told "oh, so and so who I've known for many years has MS and is just fine..." I appreciate that you're trying to make me feel better, but really you're just trying to make YOU feel better because my predicament makes you uncomfortable. It's ok to face the negative possibilities, too, and not view the disease under rose-colored glasses. It doesn't make the problems go away.
Q6 – What are you looking forward to the most in 2016 when it comes to MS? (Specific research, treatment, etc.)
My baby is the biggest thing on my mind. After she arrives, I will be able to focus on what's new!
Q7 – Don’t change your goals, change the way to achieve them. What is your biggest “Bucket list” item despite having MS?
Well my biggest goal in life is to be a rock star. Always has been, always will be :)
https://soundcloud.com/margo_sloan
Q8: Is there a particular symptom you'd like to discuss? What topics would you like to cover in the future?
I really would like to talk about MS Hugs, people who have failed steroid treatments, flares during pregnancy, other atypical experiences. Lhermitte's sign, and dealing with people around them.
Love to you all! - MSloan
Monday, January 18, 2016
ChatMS 1/18/2016
Hello all!
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
Wednesday, January 6, 2016
ChatMS - 1/4/2016
First ChatMS of the year! Please feel free to copy/paste the questions to your own blog, and remember to keep things moving and the conversation going! Happy New Year, everyone!
1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?
This is absolutely true! There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for. We are a minority. And science will ignore us if we don't make a stand. I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.
2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.?
Definitely online doing these twitter chats. I like to think there are folks that read my blog... or am I writing to no one?? oOo....
3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?
Hahahaha, what support system? I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable. Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject. I always end up making THEM feel better when I talk about the everyday struggle. So I don't really talk about it. When I have a flare it makes me feel very lonely. The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist. I didn't want to tell anyone and the manager spilled the beans. Would have lied and said it was a baby thing but I don't want to curse her along the way. Can you tell this is a sore spot for me?
4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?
North Bay of California, represent!!
5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?
I would love to have an MS penpal - - but I have to be honest. I see an awful lot of MS folks who complain on a daily basis. Do I have daily struggles? Yeah, but if I focus on it as being an everyday struggle, it will be. When I have a good day, it is a great day! So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me. I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.' When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3. We are not pitiful, don't make us out to be!
6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?
I would be ... as long as it wasn't too disruptive to work! This will be more difficult with a baby this year though.
7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?
I think MS connections are crucial to discussing depression and other struggles. It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything!
8) What could be done to further help MSers make more connections, and grow their support system?
The biggest thing that would help MSers make connections would be to END THE ADA STIGMA. I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA. It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well. It is no longer a death sentence and there are so many treatments to help give sufferers a normal life. I want to talk about it, we all should talk about it, stop the stigma!!
Love to all!
MSloan
1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?
This is absolutely true! There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for. We are a minority. And science will ignore us if we don't make a stand. I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.
2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.?
Definitely online doing these twitter chats. I like to think there are folks that read my blog... or am I writing to no one?? oOo....
3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?
Hahahaha, what support system? I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable. Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject. I always end up making THEM feel better when I talk about the everyday struggle. So I don't really talk about it. When I have a flare it makes me feel very lonely. The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist. I didn't want to tell anyone and the manager spilled the beans. Would have lied and said it was a baby thing but I don't want to curse her along the way. Can you tell this is a sore spot for me?
4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?
North Bay of California, represent!!
5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?
I would love to have an MS penpal - - but I have to be honest. I see an awful lot of MS folks who complain on a daily basis. Do I have daily struggles? Yeah, but if I focus on it as being an everyday struggle, it will be. When I have a good day, it is a great day! So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me. I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.' When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3. We are not pitiful, don't make us out to be!
6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?
I would be ... as long as it wasn't too disruptive to work! This will be more difficult with a baby this year though.
7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?
I think MS connections are crucial to discussing depression and other struggles. It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything!
8) What could be done to further help MSers make more connections, and grow their support system?
The biggest thing that would help MSers make connections would be to END THE ADA STIGMA. I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA. It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well. It is no longer a death sentence and there are so many treatments to help give sufferers a normal life. I want to talk about it, we all should talk about it, stop the stigma!!
Love to all!
MSloan
Friday, January 1, 2016
Twlight of Diagnosis
Today I watched a documentary about environmental toxins. Because, as a self-proclaimed and certified nerd, I watch NOVA on my days off, pretty much all day.
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
Saturday, December 5, 2015
Chat MS - 11/30/2015
This last Chat MS was all about MS research, a topic dear to my little science heart! Please don't hesitate to copy/paste to your own blog to keep the conversation going!
Q1 – Do you keep up to date with latest#MultipleSclerosis news and research articles?
I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments. I do of course read the ones that get distributed by the National MS Society.
Q2 – What is your “go to” place for the latest in#MultipleSclerosis information?
National MS Society and, believe it or not, Twitter. Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters. I recommend it to anyone looking for regular answers and a real community.
Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?
Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me. However, my dad hears things all the time and is really excited about them for me. He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month. My dad doesn't talk to me on the phone. So yeah, he thought it was a pretty big deal!
Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?
ABSO-FREAKING-LUTELY. I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder. I enrolled just after my diagnosis. It is SO important to participate in research, even if it isn't a clinical trial.
Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?
This is the sad reality of science. Single studies are not enough to effect real change. Some studies look great on the surface, but repeat studies do not find the same thing. There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.
Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?
I think this is excellent! But right now - - I am a bit skeptical. I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.
Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms?
Both of course! Stopped progression is incredibly important to me. More research on medications and the JC virus. More research on effective medications that don't cause OTHER problems.
Q8 – Do you think we will see a#MultipleSclerosis cure in the next 10 years?
.... realistically?
No. I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses. Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.' There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing? Or is it because of the medication? This is why MS is so hard to pinpoint.
Thanks for reading, all! MSloan
Q1 – Do you keep up to date with latest
I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments. I do of course read the ones that get distributed by the National MS Society.
Q2 – What is your “go to” place for the latest in
National MS Society and, believe it or not, Twitter. Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters. I recommend it to anyone looking for regular answers and a real community.
Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?
Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me. However, my dad hears things all the time and is really excited about them for me. He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month. My dad doesn't talk to me on the phone. So yeah, he thought it was a pretty big deal!
Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?
ABSO-FREAKING-LUTELY. I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder. I enrolled just after my diagnosis. It is SO important to participate in research, even if it isn't a clinical trial.
Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?
This is the sad reality of science. Single studies are not enough to effect real change. Some studies look great on the surface, but repeat studies do not find the same thing. There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.
Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?
I think this is excellent! But right now - - I am a bit skeptical. I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.
Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms?
Both of course! Stopped progression is incredibly important to me. More research on medications and the JC virus. More research on effective medications that don't cause OTHER problems.
Q8 – Do you think we will see a
.... realistically?
No. I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses. Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.' There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing? Or is it because of the medication? This is why MS is so hard to pinpoint.
Thanks for reading, all! MSloan
Thursday, November 26, 2015
Chat MS - 11/23/2015
This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Monday, November 16, 2015
Chat MS - 11/16/2015
Hey all!
I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway! Feel free to copy/paste the questions to put up on your blog. Remember to keep the conversation going!
I'll put in a few rudimentary answers where I can, but again, I don't drink. Love to all!
Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?
I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)
Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?
It's odd, but I have! Just as small as a dose of Nyquil and my whole body feels funny. So I bet it's good that I don't drink otherwise :)
Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?
DMD means 'disease modifying drug.' I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.
Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?
Not even close - my first question was "can I still fly to my job interview next week?" The answer was no - it was a busy month and my life was very much disrupted!
Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does.
No comment here
Q6 - Have you found any benefits to drinking moderately when you have MS?
No comment here
Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?
Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.
Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.
I have never heard this, how interesting! My husband laughed his butt off when I told him this and showed him the attached article. I have heard good things about marijuana tinctures and MS but have not explored it myself. At least, not yet!!
Love all! - MSloan
I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway! Feel free to copy/paste the questions to put up on your blog. Remember to keep the conversation going!
I'll put in a few rudimentary answers where I can, but again, I don't drink. Love to all!
Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?
I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)
Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?
It's odd, but I have! Just as small as a dose of Nyquil and my whole body feels funny. So I bet it's good that I don't drink otherwise :)
Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?
DMD means 'disease modifying drug.' I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.
Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?
Not even close - my first question was "can I still fly to my job interview next week?" The answer was no - it was a busy month and my life was very much disrupted!
Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does.
No comment here
Q6 - Have you found any benefits to drinking moderately when you have MS?
No comment here
Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?
Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.
Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.
I have never heard this, how interesting! My husband laughed his butt off when I told him this and showed him the attached article. I have heard good things about marijuana tinctures and MS but have not explored it myself. At least, not yet!!
Love all! - MSloan
Monday, November 9, 2015
Chat MS - 11/09/2015
This week's Chat MS dealt with weight gain; I missed the live chat, but hopefully this keeps it going!
If we don't talk about it, progress has no chance! Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.
I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this. I will do the best I can to stay relevant with these answers!
Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?
I was fortunate in that it didn't give me weight gain, at least not a noticeable amount. Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.
Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?
What kept me from being active the most was not fatigue, though that definitely played a part. When I exercised, my numbness got worse. I couldn't feel my legs - at all. I felt very unstable. It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.
Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?
Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste. Yuck!
Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?
No comment here -
Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?
I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms. My MS hugs were nauseating and debilitating. They would come in waves throughout the day. I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.' I had odd lower-right pain that felt like an ovarian cyst - but no cyst. It was very painful. Appendix was fine. Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins. Who knew?
Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?
I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided. It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch. You can end up giving yourself a problem you don't already have, so be careful! But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.
Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?
My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with. Your body is trying to heal. If your body gains weight after steroid treatment, the swelling will go down. Don't panic, and definitely don't overwork yourself. Save your spoons, so to speak, and listen to what your body says!
That's all, folks! Love to all -
MSloan
If we don't talk about it, progress has no chance! Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.
I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this. I will do the best I can to stay relevant with these answers!
Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?
I was fortunate in that it didn't give me weight gain, at least not a noticeable amount. Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.
Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?
What kept me from being active the most was not fatigue, though that definitely played a part. When I exercised, my numbness got worse. I couldn't feel my legs - at all. I felt very unstable. It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.
Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?
Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste. Yuck!
Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?
No comment here -
Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?
I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms. My MS hugs were nauseating and debilitating. They would come in waves throughout the day. I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.' I had odd lower-right pain that felt like an ovarian cyst - but no cyst. It was very painful. Appendix was fine. Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins. Who knew?
Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?
I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided. It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch. You can end up giving yourself a problem you don't already have, so be careful! But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.
Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?
My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with. Your body is trying to heal. If your body gains weight after steroid treatment, the swelling will go down. Don't panic, and definitely don't overwork yourself. Save your spoons, so to speak, and listen to what your body says!
That's all, folks! Love to all -
MSloan
Thursday, October 22, 2015
MS, Real Life, Real Support, Real Fear
Did I say I was done for the night? I lied. I have another thing on my mind that is really grinding me.
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
Monday, October 19, 2015
Chat MS: October 19th, 2015
Hello, readers!
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
Sunday, February 22, 2015
361 Days of MS
Hello all! It's been a while!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
Monday, September 1, 2014
Updating on the Times -
Funny how when things are going well, you are less likely to update on things like that. But I think it is even more important than when reporting poor condition!
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
Thursday, June 19, 2014
Relocated
Hello all! I know it has been a while since I posted, but that is a good thing for sure.
The last time I wrote, I was doing some art therapy. I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually. But right now, I'm just excited to feel well enough to create again.
I made the big move, and am now in California, very far away from the place I called 'home' my whole life. I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.
On the MS front, I have been on Gilenya for over a month now. So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to. If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly. I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all. Which is AWESOME.
I started work this week, and I am so happy that I ended up where I did. Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again. I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.
So, there you go, world. Right now, that's where the MS train lies. I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent. But I will prevail - and so will you! :)
The last time I wrote, I was doing some art therapy. I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually. But right now, I'm just excited to feel well enough to create again.
I made the big move, and am now in California, very far away from the place I called 'home' my whole life. I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.
On the MS front, I have been on Gilenya for over a month now. So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to. If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly. I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all. Which is AWESOME.
I started work this week, and I am so happy that I ended up where I did. Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again. I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.
So, there you go, world. Right now, that's where the MS train lies. I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent. But I will prevail - and so will you! :)
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