Happy Saturday, Everyone!
I'm having a bit of a dilemma. I need some advice on MS meds to start after pregnancy.
I know I've gone through all of them that were offered to me before, but now that it's been over two years, there have been many changes. Since I started taking Gilenya, there was research out about it causing PML, and you now can't miss even a single dose before you get dragged back in for monitoring. Now they can monitor you from home, but that seems so unnecessary to me. Back then, I could have missed my pill for almost a month before my doctors would freak out. I loved Gilenya, I didn't have any noticeable side effects from it, and it was so easy as a once/day pill - - but I don't know if my neurologist is as committed as I am to getting the pretest stuff completed so that I can take it.
I am not up for taking Tecfidera, because I am already prone to nausea as a result of my MS, and the absolute last thing I want is a drug that could potentially give me that side effect for a long time, as well as flushing. It just seems like more of a pain in the butt than I am willing to deal with.
I was initially recommended for Tysabri but I am JC virus positive. Not sure I want to risk PML and there's the 2nd pregnancy question, which affects the next one, too.
I looked into Aubagio, and while it seemed appealing at first, finding out that I would have to stop it a full 2 years before planning to get pregnant again scared me. Granted, I may not ever get pregnant again, this has been an incredibly stressful and painful experience and the fact that I can't protect my brain or my baby with medication while pregnant just terrifies me too much. I was told up and down that there was so little risk to both of us with me getting pregnant because my MS could be expected to fall dormant, only to experience several distinct flares. There's no way to know if I would happen again ... but seeing as I literally cannot see effectively out of my right eye anymore, I'm not sure it would be worth it.
This is going to be a hard call, because I know many of my other options are shots. Needle fatigue scares me, but I'll do what I have to do. Any advice on experience for these things is so appreciated!
Whew. At 37 1/2 weeks pregnant, right now I am noticing how bad my eye is doing today. I am getting off/on feelings of numbness in my left calf. I will be having an MRI shortly after my daughter is born, and I'm putting it out there right now that I will be beyond shocked if I don't have any active lesions at that time. But I could be wrong, I hope I'm wrong, and that I'm just having recurring symptoms.
In audiology, people who have bad vestibular neuritis and don't receive treatment often have permanent hearing loss. This is essentially the same thing that happened with my eye. I am not at all happy about this end result, but I have to admit that there is a little bit of "I told you so" that I feel towards the folks who kept trying to assure me that my eye would go back to normal because their "friend with MS had the same thing and it went away after a few weeks." No, my MS is not vanilla flavored, I have fucking Eggnog flavored fat free MS that's on limited supply and it is very different from your friend's disease. That's great that she had ON and it got better, but mine didn't. This wasn't because I had a poor attitude, it was because I didn't get treatment! There is a real consequence to not acting on bodily inflammation, I didn't freaking make it up to make you feel bad.
Oy.
So back to square one. Advice and experiences from your medication experience is welcome. I know I will get to discuss all options with my neurologist but as I got the impression he wasn't on the same page that I was, some ammunition with more information will really help me out. And prayers for the babe, she's due on the 20th but I hope she'll arrive any day now :)
Love, MSloan
Showing posts with label ms and pregnancy. Show all posts
Showing posts with label ms and pregnancy. Show all posts
Saturday, April 2, 2016
Wednesday, March 30, 2016
ChatMS 3/28/2016
ChatMS this week was all about cognitive issues. I'm a few days late, but I'm still trying to get the word out there!
Love to all! Feel free to copy/paste the questions to your own blog to spread the word!
....
Q1.) Have you ever experienced cognitive issues (long/short term memory, infor processing, word finding, etc) because of your MS?
I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others. This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.
Q2.) What kinds of cognitive issues have you experienced?
I have struggled with word finding, concentration while reading and listening, and most persistently - names. My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months. I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing. For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather. Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide." Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story. I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather." That's the one I noticed the most, but it wasn't the only example. Thank goodness that didn't last long!
I also cannot remember names to save my life. I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston. I can't forget that name, haha! But it's very embarrassing with patients I see constantly to still grasp for their name every time. It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office. When it was really bad just before my official Dx, I couldn't remember four women's names. Four!!
Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog. One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right. I couldn't put my finger on it. It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet. I'm very glad that the fog didn't last long!
Q3.) How long had you had MS before you started to experience cognitive issues?
I've had symptoms since 2010, that's about when I started to get name drop-out. But the really bad word finding was all at my big flare in early 2014. Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening. I would like to blame that on my MS but I don't think so!
Q4.) How have cognitive issues due to your MS impacted your daily life?
See the answer above re: name recall - that's the biggest thing for me, consistently.
Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?
Psh. No way!! I think so many MS symptoms are shirked as something else because the disease process is different for everyone. I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS. I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't. It would have been nice to be warned about cognition early on.
Q6.) Have you ever been tested for cognitive issues? If so, how?
Not by my neurologist, but I participated in a study at the local university just after diagnosis. One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles. I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it. I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it. I told the kid doing the research, "I know what that word means, but I can't tell you what it means." About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all. Again, very grateful that this issue didn't last forever.
Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?
Stress - and current flares. When I'm flaring, it's much worse. And pregnancy, haha, because now I have that to contend with!! I have started slurring my words and mixing up my consonants. I'm going to blame this on pregnancy until the baby comes before I panic.
Q8.) What measures do you take to improve your cognitive problems?
I kept writing. I do the blog and am always learning. I tell myself not to give up, and practice my music. All these things should improve my overall cognition.
Q9) Cognitive issues are invisible & can be hard to explain to others. Have you had any difficulty explaining/getting people to believe you?
Absolutely! I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age. At 25, I should have been able to remember all the names of the 10 women in my class without struggling. At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!! I should have known that putting the cheese in my macaroni before cooking it was not correct. This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!
I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan
Love to all! Feel free to copy/paste the questions to your own blog to spread the word!
....
Q1.) Have you ever experienced cognitive issues (long/short term memory, infor processing, word finding, etc) because of your MS?
I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others. This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.
Q2.) What kinds of cognitive issues have you experienced?
I have struggled with word finding, concentration while reading and listening, and most persistently - names. My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months. I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing. For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather. Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide." Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story. I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather." That's the one I noticed the most, but it wasn't the only example. Thank goodness that didn't last long!
I also cannot remember names to save my life. I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston. I can't forget that name, haha! But it's very embarrassing with patients I see constantly to still grasp for their name every time. It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office. When it was really bad just before my official Dx, I couldn't remember four women's names. Four!!
Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog. One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right. I couldn't put my finger on it. It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet. I'm very glad that the fog didn't last long!
Q3.) How long had you had MS before you started to experience cognitive issues?
I've had symptoms since 2010, that's about when I started to get name drop-out. But the really bad word finding was all at my big flare in early 2014. Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening. I would like to blame that on my MS but I don't think so!
Q4.) How have cognitive issues due to your MS impacted your daily life?
See the answer above re: name recall - that's the biggest thing for me, consistently.
Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?
Psh. No way!! I think so many MS symptoms are shirked as something else because the disease process is different for everyone. I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS. I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't. It would have been nice to be warned about cognition early on.
Q6.) Have you ever been tested for cognitive issues? If so, how?
Not by my neurologist, but I participated in a study at the local university just after diagnosis. One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles. I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it. I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it. I told the kid doing the research, "I know what that word means, but I can't tell you what it means." About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all. Again, very grateful that this issue didn't last forever.
Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?
Stress - and current flares. When I'm flaring, it's much worse. And pregnancy, haha, because now I have that to contend with!! I have started slurring my words and mixing up my consonants. I'm going to blame this on pregnancy until the baby comes before I panic.
Q8.) What measures do you take to improve your cognitive problems?
I kept writing. I do the blog and am always learning. I tell myself not to give up, and practice my music. All these things should improve my overall cognition.
Q9) Cognitive issues are invisible & can be hard to explain to others. Have you had any difficulty explaining/getting people to believe you?
Absolutely! I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age. At 25, I should have been able to remember all the names of the 10 women in my class without struggling. At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!! I should have known that putting the cheese in my macaroni before cooking it was not correct. This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!
I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan
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 14, 2016
ChatMS, 3/14/2016
Alright, peeps! Time for another installment of post-hours ChatMS!
I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner. Spending a lot of "spoons" tonight. Looks like this was a good one! Don't forget to copy/paste the questions to your own blog!
Q1: Has your social life changed since being diagnosed? If so, in what ways?
Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be. However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic. I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'
Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?
I didn't tell many people for two years. I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month. They don't understand it and they never will. The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis. Mixed reactions from everyone I told. I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.
Q3: How long after meeting someone do you tell them you have MS?
As a general rule, I don't tell people right away. This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way. It's just not worth the hassle. I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all. It was MS brain. And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers. I don't wait at church. To me, church is off the table. If you are going to judge me at church, you shouldn't be at church!
Q4: How do you tell people? When the time is right? Or it just comes out in conversation?
I do both - when the time is 'right,' and when it makes sense in the context of the conversation. I don't just blab about it. Again, seems like an attention getting thing - and you get negative attention for something like this, no positive. People pity you, they don't want to understand you. As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle. I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy.
Q5: Are there times you're ever hesitant to tell people you have MS?
Abso-freaking-lutely. In a professional context, this is a HUGE no-no. I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability. I'm an ADA risk. Is it incredibly illegal, unfair, and terrible that I would worry about such a thing? Yes. But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly. They took my interview and I heard not another word. It was very painful, but I learned a very hard and valuable lesson. Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.
It's shitty, and I hope this changes.
Q6: Did you meet your significant other before or after being diagnosed?
Long before. We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons. My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices. It was a hard year. And then... I got sick.
He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical. When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!
Q7: Do you think having MS decreases your chance of finding a life partner?
I can't comment on this because of my answer to Q6, but why the hell should it?!
Q8: Do people treat you differently after hearing about your disease?
Yup.
Negatively. Awkwardly. Skeptically. And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.
Q9: Do you find that most people are understanding when you need to reschedule plans?
Eh. I kinda have a reputation as a flake.
Q10: Does MS hold you back from living a full life?
Hell no!! As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!
Love to all, I really liked this one!! I look forward to seeing other responses :)
MSloan
I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner. Spending a lot of "spoons" tonight. Looks like this was a good one! Don't forget to copy/paste the questions to your own blog!
Q1: Has your social life changed since being diagnosed? If so, in what ways?
Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be. However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic. I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'
Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?
I didn't tell many people for two years. I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month. They don't understand it and they never will. The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis. Mixed reactions from everyone I told. I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.
Q3: How long after meeting someone do you tell them you have MS?
As a general rule, I don't tell people right away. This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way. It's just not worth the hassle. I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all. It was MS brain. And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers. I don't wait at church. To me, church is off the table. If you are going to judge me at church, you shouldn't be at church!
Q4: How do you tell people? When the time is right? Or it just comes out in conversation?
I do both - when the time is 'right,' and when it makes sense in the context of the conversation. I don't just blab about it. Again, seems like an attention getting thing - and you get negative attention for something like this, no positive. People pity you, they don't want to understand you. As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle. I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy.
Q5: Are there times you're ever hesitant to tell people you have MS?
Abso-freaking-lutely. In a professional context, this is a HUGE no-no. I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability. I'm an ADA risk. Is it incredibly illegal, unfair, and terrible that I would worry about such a thing? Yes. But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly. They took my interview and I heard not another word. It was very painful, but I learned a very hard and valuable lesson. Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.
It's shitty, and I hope this changes.
Q6: Did you meet your significant other before or after being diagnosed?
Long before. We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons. My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices. It was a hard year. And then... I got sick.
He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical. When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!
Q7: Do you think having MS decreases your chance of finding a life partner?
I can't comment on this because of my answer to Q6, but why the hell should it?!
Q8: Do people treat you differently after hearing about your disease?
Yup.
Negatively. Awkwardly. Skeptically. And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.
Q9: Do you find that most people are understanding when you need to reschedule plans?
Eh. I kinda have a reputation as a flake.
Q10: Does MS hold you back from living a full life?
Hell no!! As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!
Love to all, I really liked this one!! I look forward to seeing other responses :)
MSloan
Sunday, March 13, 2016
Optic Neuritis - The Saga Continues
Anyone who has ever had to deal with Optic Neuritis will tell you that it isn't clean-cut. I have good days and bad days with it, and now that it's been 15 weeks since it began, I'm starting to come to grips with the very real possibility that I may never really get my eye back the way it was.
As an artist, this is somewhat mournful, since I don't see detail the way I used to. Even with both of my eyes together, there is a constant sense that something just isn't right. Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well. I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.
How I'm seeing, Good Eye Vs. Bad Eye:
When you have something like ON, once you mention it, that's all anyone wants to hear about it. When it first occurred, my coworkers would ask how my eye was, for about the first two weeks. When it didn't improve, they stopped asking. I haven't been asked about it in over 10 weeks. Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition. I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.
That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others. It's awkward. No one wants to talk about it, and it isn't real to them. It can't "be that bad." But of course they feel that way, they don't have to live with it! It just isn't real. And honestly, it wasn't real to me in regards to my patients until it reached a certain point. Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!
My positivity blog is helping with how I deal with the day to day. I wish I wasn't facing drama at my workplace, but I am trying to rise above it. It is so petty to fight with one another as adults, isn't it? There are so many much more important things.
I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea. I know everyone's ON is different - this is very close to what mine actually looks like.
About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan
As an artist, this is somewhat mournful, since I don't see detail the way I used to. Even with both of my eyes together, there is a constant sense that something just isn't right. Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well. I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.
How I'm seeing, Good Eye Vs. Bad Eye:
When you have something like ON, once you mention it, that's all anyone wants to hear about it. When it first occurred, my coworkers would ask how my eye was, for about the first two weeks. When it didn't improve, they stopped asking. I haven't been asked about it in over 10 weeks. Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition. I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.
That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others. It's awkward. No one wants to talk about it, and it isn't real to them. It can't "be that bad." But of course they feel that way, they don't have to live with it! It just isn't real. And honestly, it wasn't real to me in regards to my patients until it reached a certain point. Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!
My positivity blog is helping with how I deal with the day to day. I wish I wasn't facing drama at my workplace, but I am trying to rise above it. It is so petty to fight with one another as adults, isn't it? There are so many much more important things.
I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea. I know everyone's ON is different - this is very close to what mine actually looks like.
About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan
Friday, March 4, 2016
Looking to the future ...
I'm wondering what to do after this baby arrives.
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Monday, February 29, 2016
ChatMS: 2/29/2016
Happy Leap Day!
Q1 – March is MS Awareness month. What will you be doing to spread Multiple Sclerosis awareness?
I have signed up for Walk MS this coming April (though my due date is just three days later, yikes!) and I intend to 'come out' to some more friends who don't know about my diagnosis. Like my depression, I gather many will be surprised, as this is just as invisible. If we don't let the people we love know our struggles, how can we hope to gain widespread acceptance and understanding?
Q2 - What have you done in the past to raise Multiple Sclerosis awareness?
This blog is my best way to raise MS Awareness - and I have volunteered in the past for the local Walk MS event!
Q3 – Do any landmarks or cities near you “Go Orange” (or red) for MS Awareness Month?
Rats - no. But I certainly will be going orange this month with my brand-new, sparkly orange nail polish!! :)
Q4 – What do you think is the best media to spread MS awareness?
Face-to-face, absolutely. I have spoken with many patients about my MS and been thanked for opening up about my struggles with them. Mind you, I don't ever discuss it with them as "poor me, look what I'm going through," but I do bring it up if they say they are alone with their invisible illness. When we battle our illnesses together, we become a team, and they trust me more as a provider. I wish I could connect with my own doctors the way I connect with my patients, because then I would really feel like I am being listened to.
On the other hand - digital medial makes widespread effect possible, so I can't complain about good 'ol FB, twitter, and blogging, of course!
Q5 – When asked, how do you describe Multiple Sclerosis?
I say that my brain likes to eat itself! I talk a little bit about the myelin sheath around neurons, and how MS is a condition that breaks down that myelin. When scar tissue forms, or sclerotic tissue, it creates a short circuit in the nerve fiber. So, literally, multiple areas of sclerotic tissue, or Multiple Sclerosis. I say that it affects me in many ways, from debilitating fatigue to numbness and tingling, and that at 20 weeks pregnant, my MS half-blinding my right eye and it is still recovering. I mention that everyone's MS is different, however, and that while there are some who are not as effected as I am, there are just as many who are much worse off.
Q6 – What items can be frustrating when raising awareness?
"But you look fine, so it can't be that bad."
You have no idea what this actually feels like. I don't want to be one of those people who says, "I carry my MS with me every single day like a burden on my back," because honestly, some days are simply not like that at all. On my great days, of which I usually have many in a row, I forget about the MS and just live. It's an excellent feeling. But when I am feeling shitty, I feel REALLY shitty, and I have to keep face about it because I can't be 'sick' all the time, even when I feel like it. I've felt intermittently sick since late 2009. Before that, I was a generally sick kid, always getting sinus infections and having ear problems. I'm really ready to not be sick anymore.
The other thing is the unspoken truth of why issues like MS stay stagnant - if it doesn't apply to you, you're less likely to give a damn about it. When I start telling people I know about my disease, I'm sure they'll start to care. But you have to have a reason to get behind something. People usually have a reason to get really 'into' wearing pink for breast cancer. I want more people to find reasons to wear orange!
Q7 – What would you consider a successful MS Awareness effort?
Getting anyone that I actually know, in my real life, to participate in MS events or look at MS research. And not compare the different people they know to me; have a healthy respect that everyone's case is different. I can't tell you how sickening it is to be told, "Well, my friend so-and-so has had MS for forty years and she is just fine," I could just as easily retort that another friend of mine who is my age has been in a wheelchair for five years because of her MS. Everyone's case is different. I know you think you're helping when you only want to focus on the possibility that my pregnancy could make my MS disappear, but as that has been the opposite case, I'd prefer if you just shut up and listened to my struggle instead of trying to fix it to make yourself feel better.
Q8 – Where do you direct people if they ask for more information on Multiple Sclerosis?
I'll admit, I wish I did more to spread awareness in this respect. But I have so rarely been asked for 'more information,' this feels like an empty question.
That's all, folks!! Have a great week -
MSloan
Q1 – March is MS Awareness month. What will you be doing to spread Multiple Sclerosis awareness?
I have signed up for Walk MS this coming April (though my due date is just three days later, yikes!) and I intend to 'come out' to some more friends who don't know about my diagnosis. Like my depression, I gather many will be surprised, as this is just as invisible. If we don't let the people we love know our struggles, how can we hope to gain widespread acceptance and understanding?
Q2 - What have you done in the past to raise Multiple Sclerosis awareness?
This blog is my best way to raise MS Awareness - and I have volunteered in the past for the local Walk MS event!
Q3 – Do any landmarks or cities near you “Go Orange” (or red) for MS Awareness Month?
Rats - no. But I certainly will be going orange this month with my brand-new, sparkly orange nail polish!! :)
Q4 – What do you think is the best media to spread MS awareness?
Face-to-face, absolutely. I have spoken with many patients about my MS and been thanked for opening up about my struggles with them. Mind you, I don't ever discuss it with them as "poor me, look what I'm going through," but I do bring it up if they say they are alone with their invisible illness. When we battle our illnesses together, we become a team, and they trust me more as a provider. I wish I could connect with my own doctors the way I connect with my patients, because then I would really feel like I am being listened to.
On the other hand - digital medial makes widespread effect possible, so I can't complain about good 'ol FB, twitter, and blogging, of course!
Q5 – When asked, how do you describe Multiple Sclerosis?
I say that my brain likes to eat itself! I talk a little bit about the myelin sheath around neurons, and how MS is a condition that breaks down that myelin. When scar tissue forms, or sclerotic tissue, it creates a short circuit in the nerve fiber. So, literally, multiple areas of sclerotic tissue, or Multiple Sclerosis. I say that it affects me in many ways, from debilitating fatigue to numbness and tingling, and that at 20 weeks pregnant, my MS half-blinding my right eye and it is still recovering. I mention that everyone's MS is different, however, and that while there are some who are not as effected as I am, there are just as many who are much worse off.
Q6 – What items can be frustrating when raising awareness?
"But you look fine, so it can't be that bad."
You have no idea what this actually feels like. I don't want to be one of those people who says, "I carry my MS with me every single day like a burden on my back," because honestly, some days are simply not like that at all. On my great days, of which I usually have many in a row, I forget about the MS and just live. It's an excellent feeling. But when I am feeling shitty, I feel REALLY shitty, and I have to keep face about it because I can't be 'sick' all the time, even when I feel like it. I've felt intermittently sick since late 2009. Before that, I was a generally sick kid, always getting sinus infections and having ear problems. I'm really ready to not be sick anymore.
The other thing is the unspoken truth of why issues like MS stay stagnant - if it doesn't apply to you, you're less likely to give a damn about it. When I start telling people I know about my disease, I'm sure they'll start to care. But you have to have a reason to get behind something. People usually have a reason to get really 'into' wearing pink for breast cancer. I want more people to find reasons to wear orange!
Q7 – What would you consider a successful MS Awareness effort?
Getting anyone that I actually know, in my real life, to participate in MS events or look at MS research. And not compare the different people they know to me; have a healthy respect that everyone's case is different. I can't tell you how sickening it is to be told, "Well, my friend so-and-so has had MS for forty years and she is just fine," I could just as easily retort that another friend of mine who is my age has been in a wheelchair for five years because of her MS. Everyone's case is different. I know you think you're helping when you only want to focus on the possibility that my pregnancy could make my MS disappear, but as that has been the opposite case, I'd prefer if you just shut up and listened to my struggle instead of trying to fix it to make yourself feel better.
Q8 – Where do you direct people if they ask for more information on Multiple Sclerosis?
I'll admit, I wish I did more to spread awareness in this respect. But I have so rarely been asked for 'more information,' this feels like an empty question.
That's all, folks!! Have a great week -
MSloan
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
Sunday, February 14, 2016
Keeping A Record
I have been on a path of healing.
My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness. It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again. As an artist, that's very painful. But I'm trying to move forward, and not stay stagnant with my feelings.
Facebook can be an excellent record keeper, did you know that? As I have been getting older, I have become less whiny in general over my circumstances. But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were. Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea. I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months! As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record. And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.
I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal. This book describes me and my experience to a T. I feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.
I hope you find your healing as well. Love to all,
MSloan
My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness. It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again. As an artist, that's very painful. But I'm trying to move forward, and not stay stagnant with my feelings.
Facebook can be an excellent record keeper, did you know that? As I have been getting older, I have become less whiny in general over my circumstances. But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were. Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea. I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months! As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record. And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.
I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal. This book describes me and my experience to a T. I feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.
I hope you find your healing as well. Love to all,
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
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
Bye bye, right eye
I am... more than a little bit disappointed. Well, I guess disappointed isn't the right word.
I feel mislead.
I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses. Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.
As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.
The first I wrote about a few weeks ago; my feet went numb again. This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom. Usually, that is brought on by water retention and compressed nerves due to weight gain. I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness. Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else. VERY weird. Like, touch your arm just below your wrist and imagine you are feeling it at your elbow. Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.
Well, now I have had another serious symptom. I can't see out of my right eye.
Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful. Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently. But by the time I got home, it seemed to be relatively normal. I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.
This time, there is no pain. I have a headache daily because of my pregnancy and it feels different from my typical tension headache. This one is more likely hormonal or dehydration, which I try to battle as much as I can. Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it. So, for the most part, I am thankful that this one has no pain.
Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right. I think I took my glasses off at least five times to clean them, to no avail. I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right. I went to my pregnancy class and thought, "well, maybe it's the lighting in here." I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.
Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right. I turn to my right to get tissue and my earplug. Nope... all fuzzy. I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head. If I had any other job, I would have stayed home. Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.' After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.
This sucks. This SUCKS. If you were to draw a square, the entire left/bottom quarter is essentially missing. In one eye alone, this isn't the worst thing in the world. But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting. When things move in this area of my vision, it looks like static. My eye is working okay, it's my brain that's all screwed up!
I can't do the usual steroid treatment because I am pregnant. I feel so helpless. Like, what should I do? What will happen? It seems to be getting darker. I don't know if it's getting bigger. I don't know how long it will take to get better. Thank God I am left-eye dominant and look into people's ears on the opposite side. This is just ... unfair and ridiculous. I feel lied to, mislead, and angry. I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system! Why have you not calmed down yet??!!
Oy.
MSloan
I feel mislead.
I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses. Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.
As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.
The first I wrote about a few weeks ago; my feet went numb again. This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom. Usually, that is brought on by water retention and compressed nerves due to weight gain. I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness. Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else. VERY weird. Like, touch your arm just below your wrist and imagine you are feeling it at your elbow. Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.
Well, now I have had another serious symptom. I can't see out of my right eye.
Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful. Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently. But by the time I got home, it seemed to be relatively normal. I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.
This time, there is no pain. I have a headache daily because of my pregnancy and it feels different from my typical tension headache. This one is more likely hormonal or dehydration, which I try to battle as much as I can. Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it. So, for the most part, I am thankful that this one has no pain.
Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right. I think I took my glasses off at least five times to clean them, to no avail. I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right. I went to my pregnancy class and thought, "well, maybe it's the lighting in here." I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.
Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right. I turn to my right to get tissue and my earplug. Nope... all fuzzy. I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head. If I had any other job, I would have stayed home. Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.' After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.
This sucks. This SUCKS. If you were to draw a square, the entire left/bottom quarter is essentially missing. In one eye alone, this isn't the worst thing in the world. But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting. When things move in this area of my vision, it looks like static. My eye is working okay, it's my brain that's all screwed up!
I can't do the usual steroid treatment because I am pregnant. I feel so helpless. Like, what should I do? What will happen? It seems to be getting darker. I don't know if it's getting bigger. I don't know how long it will take to get better. Thank God I am left-eye dominant and look into people's ears on the opposite side. This is just ... unfair and ridiculous. I feel lied to, mislead, and angry. I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system! Why have you not calmed down yet??!!
Oy.
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
Saturday, October 31, 2015
Baby Blanket
I started a baby blanket last night! Well, I attempted to, until I was hit with a wave of fatigue so hard I thought I was going to pass out, while sitting down! I had just enough energy to take my prenatal and crawl into bed.
Where I proceeded to lie awake for several hours. AUGH! I can't be alone in this. I feel like a Nirvana lyric.
I did, however, 'wake up' this morning and went for a walk to the local donut shop. Cake donut with sprinkles - mm! I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day. I have never been successful at putting on weight when I want to. Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.
My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery! I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet. It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again. Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!
Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.
Enough for now, back to crocheting and watching "Moonrise Kingdom." I love Wes Anderson movies, don't you? Over and out -
MSloan
Where I proceeded to lie awake for several hours. AUGH! I can't be alone in this. I feel like a Nirvana lyric.
I did, however, 'wake up' this morning and went for a walk to the local donut shop. Cake donut with sprinkles - mm! I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day. I have never been successful at putting on weight when I want to. Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.
My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery! I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet. It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again. Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!
Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.
Enough for now, back to crocheting and watching "Moonrise Kingdom." I love Wes Anderson movies, don't you? Over and out -
MSloan
Thursday, October 29, 2015
Feeling Low
Sometimes I feel like I'm climbing a mountain with no summit and no oxygen. I keep climbing and climbing, but I just can't get there. I am frozen with cold. I can't feel my feet. I can't feel my fingers. But I keep climbing anyway.
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
Monday, October 26, 2015
ChatMS - 10/26/2015
Tonight's ChatMS was all about intimacy. I appreciate all of your support and participation, feel free to comment or copy/paste for your own blogs!
....
Q1: On a scale of 1 to 5, how comfortable do you feel talking about Intimacy?
I'm married and generally very open. I rate at a 5!
Q2: Many people have different definitions of intimacy. What does it mean to you?
Intimacy to me means the ability to open up to a person in more than a casual or surface manner. It is not always sexual or romantic; I have few intimate relationships in my life, I am an open person but I am not easily trusting after one of my most precious relationships fell apart. It has new meaning to me now, especially in regards to MS, because it can and will impact every single relationship one has.
Q3: MS can have effects on Intimacy. Have you noticed changes since your diagnosis?
Yes - a few. I wrote a blog post about this earlier last week; it's difficult to feel welcomed to discuss my MS by people at work or church because they don't understand it. I had some more sexual dysfunctions as well, which I will address in later questions.
Q4: Have you and your partner discussed how MS can affect Intimacy?
Yes - we have had to have tough conversations about what this means for me, and how things might change in our relationship. We had to really buckle down and decide if we wanted to have children. It meant I had to breach the subject with a few friends - and I mean few. Many of the people I consider to be 'friends' still don't know I have MS - not that it matters, but I feel it's an important part of understanding why I make certain decisions.
Q5: MSers have more problems with ‘sex’ than a person who doesn’t have MS. Do you struggle with this?
Yes and no - I noticed a big drop in my libido shortly after being diagnosed, and when you are numb in areas from the waist down, it absolutely affects your ability to enjoy sex. I was depressed and very tired - it never felt like a good time, and this came right after a period where my libido was at an all-time high and our sex life was excellent; it was quite a setback.
Q6: ONLY if you are comfortable, what MS related symptoms have you noticed during times of physical intimacy?
The biggest one was an effect on my orgasms. For me, a climax affects my entire body - it isn't just localized in one 'place.' Instead, I can feel contraction and blood rushing all through my legs and torso, which enhances the experience. When I couldn't feel my leg or part of me pelvis, it really impacted my libido and my ability to enjoy sex when we had it. I was terrified that it would ruin our intimate time together forever. Thankfully, that ended. Now the only thing affecting our sex life is the weird experience of pregnancy.
I swear, I need to write a book - Pregnancy Sex: The Final Frontier.
Q7: How do you deal with the symptoms of MS and Intimacy? Have you talked to your neuro about it?
Just like anything in a relationship, communication is key. I have to be honest with my husband about do and do not feel ready for. I didn't discuss my sex drive with my neurologist then, but she was very perceptive and put me on anti-depressants. It was a lifesaver, though my Lexapro negatively impacted my climaxes as well for a while.
It's so refreshing to know that this is not an isolated problem, especially because it is likely addressed by some physicians as being a side effect of depression and nothing else. Don't let what your physician tells you be the only thing you learn - do research, ask others, be accountable for your healthcare!
Keep the conversation going! Participate weekly in #ChatMS on Twitter and FB!
MSloan
....
Q1: On a scale of 1 to 5, how comfortable do you feel talking about Intimacy?
I'm married and generally very open. I rate at a 5!
Q2: Many people have different definitions of intimacy. What does it mean to you?
Intimacy to me means the ability to open up to a person in more than a casual or surface manner. It is not always sexual or romantic; I have few intimate relationships in my life, I am an open person but I am not easily trusting after one of my most precious relationships fell apart. It has new meaning to me now, especially in regards to MS, because it can and will impact every single relationship one has.
Q3: MS can have effects on Intimacy. Have you noticed changes since your diagnosis?
Yes - a few. I wrote a blog post about this earlier last week; it's difficult to feel welcomed to discuss my MS by people at work or church because they don't understand it. I had some more sexual dysfunctions as well, which I will address in later questions.
Q4: Have you and your partner discussed how MS can affect Intimacy?
Yes - we have had to have tough conversations about what this means for me, and how things might change in our relationship. We had to really buckle down and decide if we wanted to have children. It meant I had to breach the subject with a few friends - and I mean few. Many of the people I consider to be 'friends' still don't know I have MS - not that it matters, but I feel it's an important part of understanding why I make certain decisions.
Q5: MSers have more problems with ‘sex’ than a person who doesn’t have MS. Do you struggle with this?
Yes and no - I noticed a big drop in my libido shortly after being diagnosed, and when you are numb in areas from the waist down, it absolutely affects your ability to enjoy sex. I was depressed and very tired - it never felt like a good time, and this came right after a period where my libido was at an all-time high and our sex life was excellent; it was quite a setback.
Q6: ONLY if you are comfortable, what MS related symptoms have you noticed during times of physical intimacy?
The biggest one was an effect on my orgasms. For me, a climax affects my entire body - it isn't just localized in one 'place.' Instead, I can feel contraction and blood rushing all through my legs and torso, which enhances the experience. When I couldn't feel my leg or part of me pelvis, it really impacted my libido and my ability to enjoy sex when we had it. I was terrified that it would ruin our intimate time together forever. Thankfully, that ended. Now the only thing affecting our sex life is the weird experience of pregnancy.
I swear, I need to write a book - Pregnancy Sex: The Final Frontier.
Q7: How do you deal with the symptoms of MS and Intimacy? Have you talked to your neuro about it?
Just like anything in a relationship, communication is key. I have to be honest with my husband about do and do not feel ready for. I didn't discuss my sex drive with my neurologist then, but she was very perceptive and put me on anti-depressants. It was a lifesaver, though my Lexapro negatively impacted my climaxes as well for a while.
It's so refreshing to know that this is not an isolated problem, especially because it is likely addressed by some physicians as being a side effect of depression and nothing else. Don't let what your physician tells you be the only thing you learn - do research, ask others, be accountable for your healthcare!
Keep the conversation going! Participate weekly in #ChatMS on Twitter and FB!
MSloan
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