Tonight, I finally did it. I finally just bit the bullet and stopped beating around the bush. I let it be known that I had Multiple Sclerosis to my friends on Facebook - which is scarier than it seems.
This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS. No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!
Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick,
all the time. I started to struggle to see the tv screen, and I had
nearly constant headaches. In January 2010, I started to have daily
nausea, a symptom that debilitated me and made me constantly paranoid
that I would get sick in class. I got glasses and changed my birth
control. I changed my diet and carried pepto bismol tablets with me
everywhere I went. Nothing changed the nausea. It got so bad, I saw a
movie with my friend and I made her sit in the theatre with me for about
fifteen minutes before I felt well enough to stand up to leave. I once
had to call Steve to come rescue me from the Safeway five blocks from
our apartment because I literally could not stand up any longer, and I
abandoned my cart in the pharmacy and hustled to my car.
It was a
scary six months. But at the end of the semester, I felt better. I
had cycles like this one intermittently for the next few years, rearing
their ugly head again most noticeably in November of 2013. I had
avoided the problem, and avoided telling anyone I knew what I was
feeling, for fear that i would be told it was "all in my head," or that I
was "just stressed."
Two years ago, on February 26th of 2014, I
woke up and could not feel the left side of my body, nor could I feel my
right foot. I tried to ignore it. Later that night, I called an old
friend and texted my sister, and was told it was probably nothing, which
was the response I got from the few people I told that day. But I knew
what was wrong. I had known since that time that I call, "when I got
sick," those early months of 2010 when I couldn't ignore my symptoms any
more, and went from doctor to doctor, learning nothing, until my
symptoms went away on their own.
I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.
Since that time, I have had symptoms that have come and gone, some that
have stayed, and some that only arise when I get stressed. I have lost
vision, I have lost words, I have had dizziness and now have constant
tinnitus. I have had days when I could not get out of bed. I have had
weeks where whenever I leaned over, I had an electric shock go down my
spine, every single time. I was told my illness would subside while I
was pregnant - it has not. You can't see my illness, but it is very,
very real to me.
People always share "Save the Ta-Tas," and say
that Cancer awareness is an important cause. While I absolutely support
awareness of various cancers and illnesses, from autism to seizures to
ataxia, Multiple Sclerosis is a largely ignored disease because of its
invisible nature. You can't always tell when someone has MS. Did you
know that many of the people that you scoff at for parking in the
Handicap spaces struggle with MS, and it takes their every breath to
walk just to the door? That they might not be able to feel their feet,
or their legs, or their hips? That they might have a suffocating
squeeze around their abdomen, a symptom inappropriately called the "MS
Hug," which could bring them to their knees at any minute?
March
is Multiple Sclerosis Awareness and Education Month. I ask that you do
one thing - if you have a question about my MS, ask me. Don't make
assumptions, and don't google it. Just ask me. Because the more people
who are touched personally by this disease, the better the world will
be - because awareness brings research, it brings discussion, it WILL
bring a cure.
Wear ORANGE!
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
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