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
Monday, January 25, 2016
Monday, January 18, 2016
ChatMS 1/18/2016
Hello all!
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
Wednesday, January 6, 2016
ChatMS - 1/4/2016
First ChatMS of the year! Please feel free to copy/paste the questions to your own blog, and remember to keep things moving and the conversation going! Happy New Year, everyone!
1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?
This is absolutely true! There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for. We are a minority. And science will ignore us if we don't make a stand. I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.
2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.?
Definitely online doing these twitter chats. I like to think there are folks that read my blog... or am I writing to no one?? oOo....
3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?
Hahahaha, what support system? I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable. Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject. I always end up making THEM feel better when I talk about the everyday struggle. So I don't really talk about it. When I have a flare it makes me feel very lonely. The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist. I didn't want to tell anyone and the manager spilled the beans. Would have lied and said it was a baby thing but I don't want to curse her along the way. Can you tell this is a sore spot for me?
4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?
North Bay of California, represent!!
5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?
I would love to have an MS penpal - - but I have to be honest. I see an awful lot of MS folks who complain on a daily basis. Do I have daily struggles? Yeah, but if I focus on it as being an everyday struggle, it will be. When I have a good day, it is a great day! So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me. I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.' When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3. We are not pitiful, don't make us out to be!
6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?
I would be ... as long as it wasn't too disruptive to work! This will be more difficult with a baby this year though.
7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?
I think MS connections are crucial to discussing depression and other struggles. It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything!
8) What could be done to further help MSers make more connections, and grow their support system?
The biggest thing that would help MSers make connections would be to END THE ADA STIGMA. I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA. It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well. It is no longer a death sentence and there are so many treatments to help give sufferers a normal life. I want to talk about it, we all should talk about it, stop the stigma!!
Love to all!
MSloan
1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?
This is absolutely true! There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for. We are a minority. And science will ignore us if we don't make a stand. I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.
2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.?
Definitely online doing these twitter chats. I like to think there are folks that read my blog... or am I writing to no one?? oOo....
3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?
Hahahaha, what support system? I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable. Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject. I always end up making THEM feel better when I talk about the everyday struggle. So I don't really talk about it. When I have a flare it makes me feel very lonely. The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist. I didn't want to tell anyone and the manager spilled the beans. Would have lied and said it was a baby thing but I don't want to curse her along the way. Can you tell this is a sore spot for me?
4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?
North Bay of California, represent!!
5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?
I would love to have an MS penpal - - but I have to be honest. I see an awful lot of MS folks who complain on a daily basis. Do I have daily struggles? Yeah, but if I focus on it as being an everyday struggle, it will be. When I have a good day, it is a great day! So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me. I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.' When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3. We are not pitiful, don't make us out to be!
6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?
I would be ... as long as it wasn't too disruptive to work! This will be more difficult with a baby this year though.
7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?
I think MS connections are crucial to discussing depression and other struggles. It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything!
8) What could be done to further help MSers make more connections, and grow their support system?
The biggest thing that would help MSers make connections would be to END THE ADA STIGMA. I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA. It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well. It is no longer a death sentence and there are so many treatments to help give sufferers a normal life. I want to talk about it, we all should talk about it, stop the stigma!!
Love to all!
MSloan
Friday, January 1, 2016
Twlight of Diagnosis
Today I watched a documentary about environmental toxins. Because, as a self-proclaimed and certified nerd, I watch NOVA on my days off, pretty much all day.
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
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