It's been a few months, and I've realized something.
My medical history is a full one, for sure. This year alone, I will have trumped what most people experience in their medical lives until they reach their mid to late 60's. In the last four years, I have learned more about myself and my disease(s) than my medical professionals typically know off the bat. It has made me a better clinician to my patients, and it has made me more empathetic as a human.
But most importantly, I feel it is vital to stress one fact: my life is not hard.
I say this now, having lived a hard life. Sure, I can sew sonnets of woe for my past, I'm even writing a book, and I could elicit an "awww" response with a genuine story every day if I wanted to. But I don't. Because as hard as my life has been, I owe it to the world not to complain about it - and because I know that, right now, it is not hard.
I have a husband who loves me, and who is so patient with me and my many idiosyncracies. I find joy in the stupidest things - from finding a clutch of snail eggs on my aquarium wall, to watching my bunnies leap over each other in the yard. I pulled the weeds in the front of my home today, feeling pride that I have a place to keep nice. I admired my daughter for minutes on end this evening, watching her jump around in her pajamas and yell out colors. I love watching her grow. I am at peace. And, most of all, I am happy.
I know a large part of my happiness is due to my medication - when I was stricken with anxiety 24/7, I could count the days that I felt well because they were so few that I had to take stock of them. Just before I was diagnosed with MS was one of these times - and it came crashing to a halt because of a public panic attack. I don't have those any more. Things have somewhat swung the other way now, to tell you the truth - I watch emotional films and listen to sad songs and do not shed a tear. I haven't really cried in months. I welled up at the end of "13 Going On 30" the other day for about a minute - then it dried up. I don't expose myself to feelings of anxiety or sadness on purpose any more, and I think this is a big reason why my brain doesn't process those emotions as readily as it used to.
I am very pleased that, at 30 years old, I am content with where I am in life. I love my job. I love my family. I love my home, my pets, my plants. I even like myself most days, a huge change from where I have been.
No - I am not healthy. But my life isn't hard.
I know plenty of healthy folks who are beautiful, put-together, and miserable.
There is a balance of life - what we are given, and what we do with it. I choose to make the most of what I have been given - even if that set of cards seems like a shit hand at first. You never know what will be wild!
Love all, MSloan
Showing posts with label what do I do. Show all posts
Showing posts with label what do I do. Show all posts
Sunday, July 8, 2018
Tuesday, January 23, 2018
An Unhealthy Coping Strategy
Hi, my name is MSloan, and I am a shopaholic.
I started my addiction to shopping in 2009 shortly after I got married and fell into a deep depression. I felt completely alone in my life, despite marrying a wonderful man, and I felt like I had no real direction. I was applying to graduate school in the only thing I had ever really studied, and I really had issues with feeling satisfied with myself - how I looked, how I felt, how I dressed, and how I coped.
I started to get "sick" around this time - the infamous part of my life that I describe as such. I know now that it was the beginning of my MS. But then - I was just getting sick. Sick in an indescribable way. Sick in a way that made me dizzy and nauseated, in a way that made me hate who I was.
So what did I do? I went shopping.
I shopped and I shopped. I went to the JcPenney no less than three times per week. I was constantly crawling the mall, looking for sizes that fit. I bought lots of clothes of the same style in different colors. Some of these clothes I still have - but when you buy a lot of clothes at once, it's highly unlikely that you're purchasing quality stuff. The clothing I bought was much more professional than my every day life called for - I ended up standing out looking too old for my age, or above my "station." But I didn't care - I craved respect, because I couldn't give it to myself. I also had concerns about whether or not my clothes were modest enough - a change that I was making at this same time, adding more stress to the situation.
I didn't go into tremendous debt for my shopping, but I knew I had a problem. If I wasn't at home or at work, I was shopping. I walked into the Dress Barn on the corner of the Target lot probably as often as I went to the Target (which was often). I knew every inch of the store. I was at these stores so much, there was no point in shopping - I knew all the inventory. I shopped online. I learned that inventory. I memorized where clothes were on each page, which color I could buy it in, what size. I learned the names of styles and fabrics. I bought shoes. I bought jewelry. I kept shopping.
Since that time, I have learned that I can still slip into shopping addiction really quickly, especially when I am feeling low. This year, I have found myself falling back into that cycle. I thought I was feeling well enough about my circumstance, but clearly that's not true. I have bought literally thousands of dollars of clothes. While I am still not going into debt for my addiction, it is taking a toll on my savings, and what I had hoped to save up for. I bought $200 of clothing yesterday. I shouldn't be spending money at all - I have to pay for a colonoscopy, likely before the month is out.
What is wrong with me??
MSloan
I started my addiction to shopping in 2009 shortly after I got married and fell into a deep depression. I felt completely alone in my life, despite marrying a wonderful man, and I felt like I had no real direction. I was applying to graduate school in the only thing I had ever really studied, and I really had issues with feeling satisfied with myself - how I looked, how I felt, how I dressed, and how I coped.
I started to get "sick" around this time - the infamous part of my life that I describe as such. I know now that it was the beginning of my MS. But then - I was just getting sick. Sick in an indescribable way. Sick in a way that made me dizzy and nauseated, in a way that made me hate who I was.
So what did I do? I went shopping.
I shopped and I shopped. I went to the JcPenney no less than three times per week. I was constantly crawling the mall, looking for sizes that fit. I bought lots of clothes of the same style in different colors. Some of these clothes I still have - but when you buy a lot of clothes at once, it's highly unlikely that you're purchasing quality stuff. The clothing I bought was much more professional than my every day life called for - I ended up standing out looking too old for my age, or above my "station." But I didn't care - I craved respect, because I couldn't give it to myself. I also had concerns about whether or not my clothes were modest enough - a change that I was making at this same time, adding more stress to the situation.
I didn't go into tremendous debt for my shopping, but I knew I had a problem. If I wasn't at home or at work, I was shopping. I walked into the Dress Barn on the corner of the Target lot probably as often as I went to the Target (which was often). I knew every inch of the store. I was at these stores so much, there was no point in shopping - I knew all the inventory. I shopped online. I learned that inventory. I memorized where clothes were on each page, which color I could buy it in, what size. I learned the names of styles and fabrics. I bought shoes. I bought jewelry. I kept shopping.
Since that time, I have learned that I can still slip into shopping addiction really quickly, especially when I am feeling low. This year, I have found myself falling back into that cycle. I thought I was feeling well enough about my circumstance, but clearly that's not true. I have bought literally thousands of dollars of clothes. While I am still not going into debt for my addiction, it is taking a toll on my savings, and what I had hoped to save up for. I bought $200 of clothing yesterday. I shouldn't be spending money at all - I have to pay for a colonoscopy, likely before the month is out.
What is wrong with me??
MSloan
Thursday, July 6, 2017
A Mystery Solved
Well, the flare continues. Bummer!
I had hoped that my run with spasticity and a random MS hug would have been the end of it, but it does appear that my whole body is going through some difficult times right now. From head to toe, I feel like a rubber band that has been stretched too tight - every muscle hurts and it truly has the sensation reminiscent of being "just about ready to cramp." Especially in my calves; I worry when I go to sleep that I will be woken suddenly by strong cramps, so I have been sleeping with my toes pointed straight up so that I don't angle my foot too much outward.
I did a lot of reading today, as I had to stay home from work. I became very sick yesterday evening. I have experienced a lot of abdominal cramping over the past couple of weeks, and it came to a pinnacle yesterday - I was in too much pain to eat more than a few bites of dinner, and I couldn't sleep. I woke in the middle of the night and threw up - something I very rarely do. It's been about 3 years since the last time, and even then it was very similar to this. And four years before that, again a similar situation. I hadn't in 15 years before then.
Things really got me thinking - as nothing I was doing seemed to help (not a single drug I took last night made me feel better), was this possibly related to my MS?
Over the past seven years, I have had a myriad of intestinal issues. Looking back, I always describe my "knowing something was wrong" when I started to suffer from daily, almost constant nausea. As someone who very rarely throws up, being nauseated was like torture. No matter how many times I would mention this to doctors, no one seemed to care. Maybe it was my BC, maybe it was the blind UTI, maybe it was stress...pish posh, something was wrong. Two years later when I developed sudden heartburn that was so severe I couldn't swallow, I was told it was because I didn't eat breakfast.
Oy, to say the least.
Today while researching, I found some information on gastroparesis - and bingo. It matches my symptoms perfectly and explains soooo many of my long lasting issues. So while right now I am still very hungry from having too little today, and my stomach still hurts, I feel closer to an answer. Isn't it strange ho having a reason makes it all so much easier to handle?
Love All,
MSloan
I had hoped that my run with spasticity and a random MS hug would have been the end of it, but it does appear that my whole body is going through some difficult times right now. From head to toe, I feel like a rubber band that has been stretched too tight - every muscle hurts and it truly has the sensation reminiscent of being "just about ready to cramp." Especially in my calves; I worry when I go to sleep that I will be woken suddenly by strong cramps, so I have been sleeping with my toes pointed straight up so that I don't angle my foot too much outward.
I did a lot of reading today, as I had to stay home from work. I became very sick yesterday evening. I have experienced a lot of abdominal cramping over the past couple of weeks, and it came to a pinnacle yesterday - I was in too much pain to eat more than a few bites of dinner, and I couldn't sleep. I woke in the middle of the night and threw up - something I very rarely do. It's been about 3 years since the last time, and even then it was very similar to this. And four years before that, again a similar situation. I hadn't in 15 years before then.
Things really got me thinking - as nothing I was doing seemed to help (not a single drug I took last night made me feel better), was this possibly related to my MS?
Over the past seven years, I have had a myriad of intestinal issues. Looking back, I always describe my "knowing something was wrong" when I started to suffer from daily, almost constant nausea. As someone who very rarely throws up, being nauseated was like torture. No matter how many times I would mention this to doctors, no one seemed to care. Maybe it was my BC, maybe it was the blind UTI, maybe it was stress...pish posh, something was wrong. Two years later when I developed sudden heartburn that was so severe I couldn't swallow, I was told it was because I didn't eat breakfast.
Oy, to say the least.
Today while researching, I found some information on gastroparesis - and bingo. It matches my symptoms perfectly and explains soooo many of my long lasting issues. So while right now I am still very hungry from having too little today, and my stomach still hurts, I feel closer to an answer. Isn't it strange ho having a reason makes it all so much easier to handle?
Love All,
MSloan
Friday, June 30, 2017
When Spasticity Strikes Back
Well, it has been a thankful long time since I have felt a need to update my MS blog. Things have been generally well. I quit the job at the sinking ship. I have a new job which will allow me to run my own office very soon - 2 weeks from now, in fact. I won't need to commute from home to work any longer. My daughter is beautiful, smart, and a joy. My husband, despite being left to watch her for several hours as I commute and while I attempt to have a life as a working mother, has no plans to leave me :).
Well, as the weather has proven in the past three weeks in Northern California, it has been bloody hot.
It began about three weeks ago with a particularly hot day. I noticed when I put my baby in the bathtub that as I bent over, I felt the ever-familiar Lhermitte's sign tingling in my feet. It has been about a year since I felt it, briefly, after a long walk. I felt it again and again, every time I moved my head, for about three or four days.
Then, the numbness returned in my legs. Only in pieces, though. Not enough to really raise any red flags.
I had an MS hug earlier this week - started on my left side, tightening beneath my ribcage, then slowly spreading around the front to my right side. By the time I went to bed, I wasn't able to take a full, deep breath without pain. But by morning, it was gone. I figured all of this was due to the heat.
Well, tonight while we were in the grocery store, my husband and I were teasing each other. I specifically remember him poking at my bottom when I suddenly felt a sharp tug in my left foot. It was a cramp. I figured, no big deal, it's just a cramp. But it didn't go away - I had to stop, take off my shoe, and try to massage my foot (in the middle of the store, no less) while I watched my second toe contort as if it was out of place. The muscle contraction was so strong it was moving my toes from the ball of my foot forward! Oh, man, it HURT! I know I seemed like a baby to him, but after five full minutes and no let up, it felt really scary. I couldn't walk on it. I hobbled around one aisle looking for a single item when I gave up and told him I was going to the car.
As I limped out of the store, my left foot started to feel better. However, I was cautious. I called my sister as I had to talk to someone other than my husband, who I am certain thinks I am blowing this out of proportion (I'm not). And guess what? Just as I was looking for my car, dammit if I didn't get a bloody cramp in my other foot! Akkk!!!! I felt like I was being attacked by my own feet. I got in the car and just sat still, massaging my feet and hoping the cramping would stop.
Since we got home, I have been trying to keep off my feet, literally. I am worried that maybe it was my shoes, maybe it was just how I was walking. I feel literally scared of walking right now. I'm afraid if I put weight on my feet, they will spasm. So I am holding still. My anxiety over it is making me walk funny, which I fear will mean I will sprain something. Every time I walk up my stairs, I get a sensation of early cramping in my foot. I am now hating my husband for wanting a house with stairs when I told him a ranch style might be better for my future.
And, I understand better why it may be a good idea to get a handicap placard if it ever happens again. Walking across the parking lot (hobbling, more like) was embarrassing and I just wanted to get to my car.
MS fucking blows. And I was doing so well! Fingers crossed that this was a one-off.
Love, MSloan
Well, as the weather has proven in the past three weeks in Northern California, it has been bloody hot.
It began about three weeks ago with a particularly hot day. I noticed when I put my baby in the bathtub that as I bent over, I felt the ever-familiar Lhermitte's sign tingling in my feet. It has been about a year since I felt it, briefly, after a long walk. I felt it again and again, every time I moved my head, for about three or four days.
Then, the numbness returned in my legs. Only in pieces, though. Not enough to really raise any red flags.
I had an MS hug earlier this week - started on my left side, tightening beneath my ribcage, then slowly spreading around the front to my right side. By the time I went to bed, I wasn't able to take a full, deep breath without pain. But by morning, it was gone. I figured all of this was due to the heat.
Well, tonight while we were in the grocery store, my husband and I were teasing each other. I specifically remember him poking at my bottom when I suddenly felt a sharp tug in my left foot. It was a cramp. I figured, no big deal, it's just a cramp. But it didn't go away - I had to stop, take off my shoe, and try to massage my foot (in the middle of the store, no less) while I watched my second toe contort as if it was out of place. The muscle contraction was so strong it was moving my toes from the ball of my foot forward! Oh, man, it HURT! I know I seemed like a baby to him, but after five full minutes and no let up, it felt really scary. I couldn't walk on it. I hobbled around one aisle looking for a single item when I gave up and told him I was going to the car.
As I limped out of the store, my left foot started to feel better. However, I was cautious. I called my sister as I had to talk to someone other than my husband, who I am certain thinks I am blowing this out of proportion (I'm not). And guess what? Just as I was looking for my car, dammit if I didn't get a bloody cramp in my other foot! Akkk!!!! I felt like I was being attacked by my own feet. I got in the car and just sat still, massaging my feet and hoping the cramping would stop.
Since we got home, I have been trying to keep off my feet, literally. I am worried that maybe it was my shoes, maybe it was just how I was walking. I feel literally scared of walking right now. I'm afraid if I put weight on my feet, they will spasm. So I am holding still. My anxiety over it is making me walk funny, which I fear will mean I will sprain something. Every time I walk up my stairs, I get a sensation of early cramping in my foot. I am now hating my husband for wanting a house with stairs when I told him a ranch style might be better for my future.
And, I understand better why it may be a good idea to get a handicap placard if it ever happens again. Walking across the parking lot (hobbling, more like) was embarrassing and I just wanted to get to my car.
MS fucking blows. And I was doing so well! Fingers crossed that this was a one-off.
Love, MSloan
Monday, March 21, 2016
ChatMS 3/21/2016
Hey all!
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
Wednesday, March 16, 2016
MSminds Chat - 3/16/2016
I found another chat on Twitter today - this one is called MSminds!
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)
Q1) Has MS had an affect on your mental health?
Yes and no. I have always suffered from depression and anxiety, but it definitely has spikes. It hit a huge peak right before my big flare that got me diagnosed. However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation. Saved me a lot of pain.
Q2) What has your experience of mental health support from healthcare professionals been like?
Surprisingly good, at least as far as my MS is concerned. My first neurologist asked me if I wanted to be put on an anti-depressant. It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety. I initially said no - but knew that I needed to do something. I told her, "Actually... actually yeah, yeah I do need an anti-depressant. Thank you." Best decision I ever made.
Q3) What do you do to boost your mood?
I have started writing a "Positivity Blog," every single day. I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow. Really is starting to help.
I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."
Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?
My blog! http://itoocanlovemyself.blogspot.com/
Q5) What more could be done to educate MSers about looking after their mental wellbeing?
Let them know that there is nothing scary about medicating for depression/anxiety/etc. I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).
Thank you all, this is a really important topic! I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)
Q1) Has MS had an affect on your mental health?
Yes and no. I have always suffered from depression and anxiety, but it definitely has spikes. It hit a huge peak right before my big flare that got me diagnosed. However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation. Saved me a lot of pain.
Q2) What has your experience of mental health support from healthcare professionals been like?
Surprisingly good, at least as far as my MS is concerned. My first neurologist asked me if I wanted to be put on an anti-depressant. It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety. I initially said no - but knew that I needed to do something. I told her, "Actually... actually yeah, yeah I do need an anti-depressant. Thank you." Best decision I ever made.
Q3) What do you do to boost your mood?
I have started writing a "Positivity Blog," every single day. I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow. Really is starting to help.
I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."
Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?
My blog! http://itoocanlovemyself.blogspot.com/
Q5) What more could be done to educate MSers about looking after their mental wellbeing?
Let them know that there is nothing scary about medicating for depression/anxiety/etc. I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).
Thank you all, this is a really important topic! I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
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
Thursday, March 10, 2016
ChatMS - 3/7/2016
Good evening, all!
I am finally getting around to typing up yesterday's ChatMS - it's been a busy day!
I've been supporting MS Awareness Month on my facebook page, posting a fact every day. Don't know if that will continue as regularly, but I want to educate the people around me. Not just to benefit their perception of my experience, but so they understand that not enough awareness = not enough progress. We make such a big deal over things like breast cancer (which is absolutely worth the fuss, I'm not saying it's not!) but MS is so invisible, it doesn't get the funding it requires to make real progress in treatment and cure.
It was the celebration of ChatMS' 1st year in existence! Please feel free to copy/paste the questions into your own blog and remember to keep the conversation going!
Q1: It’s been one entire year since#ChatMS has launched. Can you believe it or what?
Woo, go #ChatMS!
Like I said before ... I just kinda stumbled across it on twitter on a day that I was home early. I had recently deactivated my FB account and the people I followed were big #ChatMS participants!
You know, I really don't.... I know one of the first ones was "for the ladies," and the very first one I participated in was run by a member and not the usual leaders. I remember answering all questions fervently; I think part of it might have been about reactions from others about potential disability.
I love #ChatMS and how it allows me to connect with others who have this disease. We have it, it does not have us. But it's comforting to not feel alone - which is common when none of your friends have any clue what this is really like.
Q6: We brought wine to the anniversary party. If comfortable, share a selfie showing how you’re celebrating!
(Not applicable for post-chat commentary)
Q7 - What can we do to improve#ChatMS
I love seeing how every week is different - I'd like to find out more about people who have had unsuccessful treatments and especially "failed" steroids.
Q8 - have you been able to make connections and build a stronger support system thanks to#ChatMS?
Absolutely - and it gives me great blogging material!! :)
Q9 - What can we do to get others to join future#ChatMS sessions so you can gain more insights?
Maybe have more than one per week, in different time zones. Those of us out here on the west coast can't participate if we're working!
That's all, folks! Keep the conversation going! :)
MSloan
I am finally getting around to typing up yesterday's ChatMS - it's been a busy day!
I've been supporting MS Awareness Month on my facebook page, posting a fact every day. Don't know if that will continue as regularly, but I want to educate the people around me. Not just to benefit their perception of my experience, but so they understand that not enough awareness = not enough progress. We make such a big deal over things like breast cancer (which is absolutely worth the fuss, I'm not saying it's not!) but MS is so invisible, it doesn't get the funding it requires to make real progress in treatment and cure.
It was the celebration of ChatMS' 1st year in existence! Please feel free to copy/paste the questions into your own blog and remember to keep the conversation going!
Q1: It’s been one entire year since
Woo, go #ChatMS!
Q2: How long have you been participating in #ChatMS?
I've been participating for about six months! I came across it one day when I just happened to get home from work early. In California, the chat starts at 4 PM.
I've been participating for about six months! I came across it one day when I just happened to get home from work early. In California, the chat starts at 4 PM.
Q3: How did you hear about #ChatMS and what made you join?
Like I said before ... I just kinda stumbled across it on twitter on a day that I was home early. I had recently deactivated my FB account and the people I followed were big #ChatMS participants!
Q4: Do you remember what our first (or your first) #ChatMS was about?
You know, I really don't.... I know one of the first ones was "for the ladies," and the very first one I participated in was run by a member and not the usual leaders. I remember answering all questions fervently; I think part of it might have been about reactions from others about potential disability.
Q5: What does our weekly chat about #MultipleSclerosis mean to you?
I love #ChatMS and how it allows me to connect with others who have this disease. We have it, it does not have us. But it's comforting to not feel alone - which is common when none of your friends have any clue what this is really like.
Q6: We brought wine to the anniversary party. If comfortable, share a selfie showing how you’re celebrating!
(Not applicable for post-chat commentary)
Q7 - What can we do to improve
I love seeing how every week is different - I'd like to find out more about people who have had unsuccessful treatments and especially "failed" steroids.
Q8 - have you been able to make connections and build a stronger support system thanks to
Absolutely - and it gives me great blogging material!! :)
Q9 - What can we do to get others to join future
Maybe have more than one per week, in different time zones. Those of us out here on the west coast can't participate if we're working!
That's all, folks! 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
Coming Out of the MS Closet
Tonight, I finally did it. I finally just bit the bullet and stopped beating around the bush. I let it be known that I had Multiple Sclerosis to my friends on Facebook - which is scarier than it seems.
This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS. No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!
Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick, all the time. I started to struggle to see the tv screen, and I had nearly constant headaches. In January 2010, I started to have daily nausea, a symptom that debilitated me and made me constantly paranoid that I would get sick in class. I got glasses and changed my birth control. I changed my diet and carried pepto bismol tablets with me everywhere I went. Nothing changed the nausea. It got so bad, I saw a movie with my friend and I made her sit in the theatre with me for about fifteen minutes before I felt well enough to stand up to leave. I once had to call Steve to come rescue me from the Safeway five blocks from our apartment because I literally could not stand up any longer, and I abandoned my cart in the pharmacy and hustled to my car.
It was a scary six months. But at the end of the semester, I felt better. I had cycles like this one intermittently for the next few years, rearing their ugly head again most noticeably in November of 2013. I had avoided the problem, and avoided telling anyone I knew what I was feeling, for fear that i would be told it was "all in my head," or that I was "just stressed."
Two years ago, on February 26th of 2014, I woke up and could not feel the left side of my body, nor could I feel my right foot. I tried to ignore it. Later that night, I called an old friend and texted my sister, and was told it was probably nothing, which was the response I got from the few people I told that day. But I knew what was wrong. I had known since that time that I call, "when I got sick," those early months of 2010 when I couldn't ignore my symptoms any more, and went from doctor to doctor, learning nothing, until my symptoms went away on their own.
I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.
Since that time, I have had symptoms that have come and gone, some that have stayed, and some that only arise when I get stressed. I have lost vision, I have lost words, I have had dizziness and now have constant tinnitus. I have had days when I could not get out of bed. I have had weeks where whenever I leaned over, I had an electric shock go down my spine, every single time. I was told my illness would subside while I was pregnant - it has not. You can't see my illness, but it is very, very real to me.
People always share "Save the Ta-Tas," and say that Cancer awareness is an important cause. While I absolutely support awareness of various cancers and illnesses, from autism to seizures to ataxia, Multiple Sclerosis is a largely ignored disease because of its invisible nature. You can't always tell when someone has MS. Did you know that many of the people that you scoff at for parking in the Handicap spaces struggle with MS, and it takes their every breath to walk just to the door? That they might not be able to feel their feet, or their legs, or their hips? That they might have a suffocating squeeze around their abdomen, a symptom inappropriately called the "MS Hug," which could bring them to their knees at any minute?
March is Multiple Sclerosis Awareness and Education Month. I ask that you do one thing - if you have a question about my MS, ask me. Don't make assumptions, and don't google it. Just ask me. Because the more people who are touched personally by this disease, the better the world will be - because awareness brings research, it brings discussion, it WILL bring a cure.
Wear ORANGE!
This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS. No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!
Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick, all the time. I started to struggle to see the tv screen, and I had nearly constant headaches. In January 2010, I started to have daily nausea, a symptom that debilitated me and made me constantly paranoid that I would get sick in class. I got glasses and changed my birth control. I changed my diet and carried pepto bismol tablets with me everywhere I went. Nothing changed the nausea. It got so bad, I saw a movie with my friend and I made her sit in the theatre with me for about fifteen minutes before I felt well enough to stand up to leave. I once had to call Steve to come rescue me from the Safeway five blocks from our apartment because I literally could not stand up any longer, and I abandoned my cart in the pharmacy and hustled to my car.
It was a scary six months. But at the end of the semester, I felt better. I had cycles like this one intermittently for the next few years, rearing their ugly head again most noticeably in November of 2013. I had avoided the problem, and avoided telling anyone I knew what I was feeling, for fear that i would be told it was "all in my head," or that I was "just stressed."
Two years ago, on February 26th of 2014, I woke up and could not feel the left side of my body, nor could I feel my right foot. I tried to ignore it. Later that night, I called an old friend and texted my sister, and was told it was probably nothing, which was the response I got from the few people I told that day. But I knew what was wrong. I had known since that time that I call, "when I got sick," those early months of 2010 when I couldn't ignore my symptoms any more, and went from doctor to doctor, learning nothing, until my symptoms went away on their own.
I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.
Since that time, I have had symptoms that have come and gone, some that have stayed, and some that only arise when I get stressed. I have lost vision, I have lost words, I have had dizziness and now have constant tinnitus. I have had days when I could not get out of bed. I have had weeks where whenever I leaned over, I had an electric shock go down my spine, every single time. I was told my illness would subside while I was pregnant - it has not. You can't see my illness, but it is very, very real to me.
People always share "Save the Ta-Tas," and say that Cancer awareness is an important cause. While I absolutely support awareness of various cancers and illnesses, from autism to seizures to ataxia, Multiple Sclerosis is a largely ignored disease because of its invisible nature. You can't always tell when someone has MS. Did you know that many of the people that you scoff at for parking in the Handicap spaces struggle with MS, and it takes their every breath to walk just to the door? That they might not be able to feel their feet, or their legs, or their hips? That they might have a suffocating squeeze around their abdomen, a symptom inappropriately called the "MS Hug," which could bring them to their knees at any minute?
March is Multiple Sclerosis Awareness and Education Month. I ask that you do one thing - if you have a question about my MS, ask me. Don't make assumptions, and don't google it. Just ask me. Because the more people who are touched personally by this disease, the better the world will be - because awareness brings research, it brings discussion, it WILL bring a cure.
Wear ORANGE!
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
Monday, February 8, 2016
ChatMS 2/8/2016
This week's ChatMS was all about relapse triggers - something I have learned a lot about. Remember to cut/paste the questions to put on your own outreach, and spread the word!
Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)
This is an excellent question. Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning. It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them. I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.
Q2 – What have you found that supports your theory?
See above - where I grew up debunks some of the theories about Vitamin D. But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early. I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.
Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?
Stress is the number 1, number 2, and number 3. Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense. The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way. My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned. Right before this, my left side failed. I had to cancel the first trip and, therefore, the first job interview. I lied about the rest. In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities. None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.
Q4 – What have you done to avoid these triggers?
Honestly? In my case, it was moving away from my mother. She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares. When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones. I have yet to meet many people who have failed the treatment like I did. Not a coincidence that my mother was more present in my life that month because of my diagnosis. It is very important that I am aware of her effect on me.
Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)
I am about a 4. I'm pregnant, what can I say? :)
Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are?
I'm about a 2. Heat absolutely effects me. I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me. I have always been heat sensitive, even as a kid. When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs. Very disconcerting and I worry about falling and hurting others.
Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?
HA! Does anyone's neurologist really care that much? My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.
Q8 – What tips would you give to others to try and stay clear of possible triggers?
Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger. I didn't want to get away from my mother as badly as I really needed to. She raises my blood pressure and gives me so much upset. If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much. I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs. It is hard at first to eliminate triggers, but is well worth it. Good luck!
That's a wrap, all! Thanks for reading! - MSloan
Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)
This is an excellent question. Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning. It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them. I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.
Q2 – What have you found that supports your theory?
See above - where I grew up debunks some of the theories about Vitamin D. But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early. I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.
Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?
Stress is the number 1, number 2, and number 3. Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense. The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way. My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned. Right before this, my left side failed. I had to cancel the first trip and, therefore, the first job interview. I lied about the rest. In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities. None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.
Q4 – What have you done to avoid these triggers?
Honestly? In my case, it was moving away from my mother. She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares. When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones. I have yet to meet many people who have failed the treatment like I did. Not a coincidence that my mother was more present in my life that month because of my diagnosis. It is very important that I am aware of her effect on me.
Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)
I am about a 4. I'm pregnant, what can I say? :)
Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are?
I'm about a 2. Heat absolutely effects me. I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me. I have always been heat sensitive, even as a kid. When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs. Very disconcerting and I worry about falling and hurting others.
Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?
HA! Does anyone's neurologist really care that much? My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.
Q8 – What tips would you give to others to try and stay clear of possible triggers?
Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger. I didn't want to get away from my mother as badly as I really needed to. She raises my blood pressure and gives me so much upset. If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much. I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs. It is hard at first to eliminate triggers, but is well worth it. Good luck!
That's a wrap, all! Thanks for reading! - MSloan
Monday, January 25, 2016
ChatMS - 1/25/2016
This week's Chat MS was just about the new year. I'm ready for a new start, aren't you?
Don't forget to copy/paste to your own blog, and keep the conversation going!
Q1 – How is life in 2016 treating you so far?
It's going ok. I'm excited for my baby to come in April. I'm struggling with my mother. I'm struggling a little at my workplace. But in general, things are overall good!
Q2 – Did you make any MS related New Year’s Resolutions? If so, care to share?
Yes and no. I don't really have New Year's Resolutions - I have themes. My theme for this year is Acceptance - because there are some things in my life that I truly cannot change, but I can accept that there will be challenges, and I will learn to overcome them. I guess this does heavily tie into my MS as well as many other things.
Q3 – We are 4 weeks into 2016. Have you made good on your resolutions so far?
I think so!
Q5 – Do you think 2016 will bring more awareness for MS? If so, in what ways?
There is always hope for that - there are already stories of more celebrities with the condition, but I think that because it is still largely an invisible disease, we have a very long way to go for real 'awareness.' People need to understand that no two cases are the same. I hate being told "oh, so and so who I've known for many years has MS and is just fine..." I appreciate that you're trying to make me feel better, but really you're just trying to make YOU feel better because my predicament makes you uncomfortable. It's ok to face the negative possibilities, too, and not view the disease under rose-colored glasses. It doesn't make the problems go away.
Q6 – What are you looking forward to the most in 2016 when it comes to MS? (Specific research, treatment, etc.)
My baby is the biggest thing on my mind. After she arrives, I will be able to focus on what's new!
Q7 – Don’t change your goals, change the way to achieve them. What is your biggest “Bucket list” item despite having MS?
Well my biggest goal in life is to be a rock star. Always has been, always will be :)
https://soundcloud.com/margo_sloan
Q8: Is there a particular symptom you'd like to discuss? What topics would you like to cover in the future?
I really would like to talk about MS Hugs, people who have failed steroid treatments, flares during pregnancy, other atypical experiences. Lhermitte's sign, and dealing with people around them.
Love to you all! - MSloan
Don't forget to copy/paste to your own blog, and keep the conversation going!
Q1 – How is life in 2016 treating you so far?
It's going ok. I'm excited for my baby to come in April. I'm struggling with my mother. I'm struggling a little at my workplace. But in general, things are overall good!
Q2 – Did you make any MS related New Year’s Resolutions? If so, care to share?
Yes and no. I don't really have New Year's Resolutions - I have themes. My theme for this year is Acceptance - because there are some things in my life that I truly cannot change, but I can accept that there will be challenges, and I will learn to overcome them. I guess this does heavily tie into my MS as well as many other things.
Q3 – We are 4 weeks into 2016. Have you made good on your resolutions so far?
I think so!
Q5 – Do you think 2016 will bring more awareness for MS? If so, in what ways?
There is always hope for that - there are already stories of more celebrities with the condition, but I think that because it is still largely an invisible disease, we have a very long way to go for real 'awareness.' People need to understand that no two cases are the same. I hate being told "oh, so and so who I've known for many years has MS and is just fine..." I appreciate that you're trying to make me feel better, but really you're just trying to make YOU feel better because my predicament makes you uncomfortable. It's ok to face the negative possibilities, too, and not view the disease under rose-colored glasses. It doesn't make the problems go away.
Q6 – What are you looking forward to the most in 2016 when it comes to MS? (Specific research, treatment, etc.)
My baby is the biggest thing on my mind. After she arrives, I will be able to focus on what's new!
Q7 – Don’t change your goals, change the way to achieve them. What is your biggest “Bucket list” item despite having MS?
Well my biggest goal in life is to be a rock star. Always has been, always will be :)
https://soundcloud.com/margo_sloan
Q8: Is there a particular symptom you'd like to discuss? What topics would you like to cover in the future?
I really would like to talk about MS Hugs, people who have failed steroid treatments, flares during pregnancy, other atypical experiences. Lhermitte's sign, and dealing with people around them.
Love to you all! - MSloan
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
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
Sunday, October 25, 2015
About Something Else
I don't want to make my mother suffer. That isn't what I want.
But I can't feel sympathy and compassion for someone who sends me these things in the middle of the night, but refuses to acknowledge that she needs help:
"monswters," "unrelenting evcil," "demon death to alkld humans," "died iun ny9our samddorasl msewage," "dlalkl oifd them murdsere3rklesdg."
I AM DIRECTLY COPY/PASTING HERE. My mother is a master typist. This person... needs help!!
I can't get her help if she won't seek it herself. I can't get her to stop sending me the hate mail and I worry too much for her safety to stop checking on it to make sure she ISN'T claiming to have hurt herself. Because just minutes after the last, obviously banged-on-the-keyboard message, was this very clear one:
"the best one is this and it is SO TRUE that in my nightmares I KNOW THIS TRUTH. there is NOTHING you people will not do to ruin my poor little life. and I mean there is NOTHING TOO LOW for you TO DO."
These messages are NOT being instigated by anything at all. I haven't written her back in days, because they upset me so - most of my responses are answered with barrages of nasty messages in return instead of just replying to whatever it is that I said. My mother is the only one who's never seen an ultrasound of my baby. She doesn't know my doppler came in, because she wouldn't answer even if I would call. But at 4 AM, I got a string of disgusting, disorienting, misspelled and disturbing messages about how myself and my sister are putting her in danger by having a relationship with our father. Who, by the way, she thinks killed his friend, her grandson, and a random old woman who lived near his regular bar.
My father is not a murderer. I can't get her institutionalized without calling the police, but nothing changed and I mean NOTHING changed after her last 72 hour hold. It has only gotten worse.
What... what do I do?
MSloan
But I can't feel sympathy and compassion for someone who sends me these things in the middle of the night, but refuses to acknowledge that she needs help:
"monswters," "unrelenting evcil," "demon death to alkld humans," "died iun ny9our samddorasl msewage," "dlalkl oifd them murdsere3rklesdg."
I AM DIRECTLY COPY/PASTING HERE. My mother is a master typist. This person... needs help!!
I can't get her help if she won't seek it herself. I can't get her to stop sending me the hate mail and I worry too much for her safety to stop checking on it to make sure she ISN'T claiming to have hurt herself. Because just minutes after the last, obviously banged-on-the-keyboard message, was this very clear one:
"the best one is this and it is SO TRUE that in my nightmares I KNOW THIS TRUTH. there is NOTHING you people will not do to ruin my poor little life. and I mean there is NOTHING TOO LOW for you TO DO."
These messages are NOT being instigated by anything at all. I haven't written her back in days, because they upset me so - most of my responses are answered with barrages of nasty messages in return instead of just replying to whatever it is that I said. My mother is the only one who's never seen an ultrasound of my baby. She doesn't know my doppler came in, because she wouldn't answer even if I would call. But at 4 AM, I got a string of disgusting, disorienting, misspelled and disturbing messages about how myself and my sister are putting her in danger by having a relationship with our father. Who, by the way, she thinks killed his friend, her grandson, and a random old woman who lived near his regular bar.
My father is not a murderer. I can't get her institutionalized without calling the police, but nothing changed and I mean NOTHING changed after her last 72 hour hold. It has only gotten worse.
What... what do I do?
MSloan
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