My boss frequently gives me books to read on leadership and working with customers - which is typical when you do anything even remotely sales-related. While I normally scoff at such things, as I feel many of them teach you to be manipulative instead of genuine, this latest one is much different.
This book is called, "The Power of TED," and it reads like a novel instead of a self-help. It's a physically small book, but one that has already hit me deeply.
I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word. I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day. Not that. I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as "good day" in the mix.
I know this makes me sound like a bad guy, but let me explain further.
I am fully aware, absolutely, that MS is a constant companion of those who struggle with it. You can't make the scars in your brain go away any more than you can make stretch marks disappear. They're always there, even if they are less visible. They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel. But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.
This book has reminded me of a principle that I used to recall daily. Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones. It is an ugly place to put oneself. And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves. And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.
For example, in the case of my own MS. I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see. I learned today that I get carsick more than I used to because of it. It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks! It affects my ability to see details and color accurately. I cannot read well on a screen, troublesome for a person with two novels in the works. It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather. It would be easy for me to stop creating altogether. It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.
Yet, I choose daily not to be a victim of my circumstance.
Circumstances don't have personalities. They cannot victimize you personally. I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me." These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily." I get that, I truly do. I could go off on a laundry list of all the things that my MS has done to piss me off just today. But I won't, because I would be giving it permission to take over my day if I did that. I would be giving it the power. Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.
I have a friend who lost her husband last year. Even before this happened, she was somewhat of a classic "Debbie Downer." What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much. She had no tolerance for disagreement or the unexpected. I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long. She responded, "Yeah, until someone throws their hearing aid at you."
That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily. When her husband did pass away, these same traits got all the more worse. I exercised patience with her as much as I could. We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep? Easy, I don't sleep anymore. Losing interest in things you once loved? Of course, I'm alone, what's there to look forward to." This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better? Every encouraging word I offered was countered by a dramatic declaration.
I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem. It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue. This isn't something I express in how I act around others, but only in how I critique myself and my projects. When I mentioned it to this coworker, she said, "Mine would be blank." This is another choice. She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.
People have a tendency to perform how you expect them to perform. Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.
We make choices daily, to be victims of our circumstance or creators of the positive. I am choosing to be a creator of the positive. I am choosing to have more control over how I feel about my MS than to let it take control of me. I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me. But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.
I hope my rambling made sense, and that I don't seem like too much of a devil's advocate. But the path to healing isn't easy, it isn't pleasant. We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time. May you all choose the path of creation, not victimization.
Love, MSloan
Showing posts with label self-destruct. Show all posts
Showing posts with label self-destruct. Show all posts
Saturday, March 19, 2016
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
Tuesday, March 10, 2015
Trying to Heal
Hello!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Friday, March 6, 2015
Hits the Fan
Congrats, you are 1 year without another major flare!
You win: One Institutionalized Mother!
You win: One Institutionalized Mother!
Monday, May 12, 2014
Star Wars
Today, I got a call from my neurologist. Turns out, they were able to get my brain MRI results despite my insurance not covering the cost - I suppose I will get a big bill for that later, but I'm glad that they saw them, as it turns out my last round of steroids was, yet again, unsuccessful.
My MRI shows that my lesions are not necessarily getting bigger, but now there are new ones. This is not a good sign. Though it is somewhat amusing to consider that my body's inflammation 'laughs in the face of steroids,' muahaha!
I have done a little research on the drug they are going to put me on next. Let's learn about it together!
1) What is it?
The name of this drug is 'Acthar,' which reminded me an awful lot of Star Wars, hence the comic at the end of this post. I hope you find it mildly amusing :)
Acthar is called an Adrenocorticotropic hormone, or ACTH. It is meant specifically for acute exacerbations of MS (though I don't know if I could call this an acute exacerbation if I've had this for three months and it just isn't getting better. I don't feel good about that, but let's move on!)
2) What makes Acthar different from the steroid injection treatment?
Acthar is not a steriod, but it acts something like one. It forces the body's adrenal gland to go on hyperdrive and produce a hormone called 'Cortisol.' You might recognize that as a word you hear in diet pill commercials as the 'stress hormone,' which increases body fat in certain places and in general just causes all sorts of problems. Well, Acthar wants to use those crappy side effects of Cortisol to treat your MS! It basically tells your immune system and inflammatory response to STFU. It is essentially a natural steroid. It can increase body fat, increase fluid retention, decrease your body's ability to process glucose, increase your likelihood of stomach ulcer - lots of problems.
Acthar is also not an intravenous drug, meaning it is actually given in the muscle, like you would a flu shot. It shouldn't be taken intravenously because it can spread through your system at too fast a rate; this is why heroine addicts prefer a direct vein to shooting themselves in the leg. You have to give this drug to yourself in a syringe for a number of days when you receive it. I will not be doing that, I will be checking into my neurology office every day for 5 days until this is over. I have put on a brave face this whole time, but I really do not like needles, and I don't know if Steve has the strength to do this for me right now. I haven't told him yet.
It will be a fun ride for sure.
3) Why do you need this drug?
You need this drug if you have 'failed' steroids, which means you are still having an exacerbation and inflammation after being treated. I have failed steroids twice now, and have new lesions, which means somebody, somewhere, needs to tell my inflammatory system to STFU. That is where Acthar comes in.
My insurance company should cover this now that it is a justified use of the drug, you have to fail it twice for the company to give it to you as these little vials cost about $50,000 (that is straight out of the horse's mouth, the neurologist, when telling me about this a few weeks ago as the next option).
4) Okay, so it should halt the progression. What are the downsides?
It can cause wicked bad mood swings. There's a huge paragraph warning about this; I already suffer from mood swings with my depression, so I'm sure I'll be way pleasant in the next couple of weeks. General body swelling is another side effect. This is the sort of drug that you absolutely cannot accidentally become pregnant while on, too.
I'm going to go grab my laundry now, as my life cannot stop though my brain clearly wants me to take a break! I hope this helps someone out there get a better idea of what is up ahead. I will continue to update as a know more. Thanks for listening.
Let's hope Admiral Ackbar isn't right this time...
Thursday, May 8, 2014
Muted
Depression is not a presence of sadness. Rather, it is more an absence of joy.
I am steeped in quite a pit of depression right now. It is somewhat seasonal, and I can't say I'm surprised, but it is coming at a very bad time.
I had another MRI about a week ago, and the insurance didn't cover the brain, only the cervical/thoracic spine. Those are apparently clear, but then it doesn't explain why I get the shocks when I move my neck forward. And does this mean that my neurologist can't get a report on the brain, even though they took the images? How does that make sense? If I had to sit in the MRI machine for 2 hours and have a bruise on my arm as a result of a botched infusion of the gadolinium, don't I deserve to know what the heck is going on in my brain?
I'm supposed to start Gilenya next week. I was supposed to start it today, but didn't find out until the end of last week that I needed to have a lot of pre-tests done before. Called by the neurology MA - 'You will be hearing from this nurse to get them scheduled.' 'Okay, thanks, I will get them set up.' Wait a few days, hear nothing. Call back about the eye test - still no word. EKG and blood test? Still nothing. Call the neurology MA again, feel like I get in trouble for not having it done. But you told me they would call me? Okay, I'll find a place to do it. Okay, we'll move the start date a week out. You know I'm supposed to move here right? Okay, I'll wait to hear from them. What's that? That eye place doesn't want to do that test, they need to refer me out again? Okay, I'll wait. Oh, now you say I have to set up the other tests. Fantastic. I'll do that - oh, wait, no, on the day those are set up the nurse finally calls to get them scheduled at a different place so I don't have to pay for it. Well, seeing as I'm broke and now have bills to pay, sure I'll take you up on that. Haven't you done this before? How am I supposed to know how this works? Okay, I'll do that then. Eye test today.
Did I mention I'm graduating tomorrow?
I am so unbelievably stressed out. I feel like I'm having another exacerbation in the middle of all this. I am having the MS hugs so frequently that I don't want to eat, which makes it worse. I'm not feeling as tingly, which is good, but that changes by the hour. I feel like crying all the time, and finally started now that I'm not at work. I finished my internship yesterday, and now I have to jump right in to finding a place to live on the other end for my new job. The new job! It starts in a month. I am not ready. I need a break. I have no time for a break, now I have to pack to move. I have no energy.
This feels like a spiral. I can't get a hold of anything. There are so many things I want to get done, I need to get done, in the time before we move - and I just can't find the time to do it. Now my husband keeps asking if I'll fly out to California to find a place to live soon - when am I going to do that? Why do I have to do that by myself? Oh yeah, because I'm broke. Because there's no good way to end up in this situation, but this particularly sucks. I have no one, I feel so alone, I feel like there are so many people in my husband's life who are not uncomfortable asking him how he's feeling but no one wants to find out how I'm handling it. So, as a result, the few times I do get asked I end up lying - "I'm doing okay, it's stressful but I'll get through it." "I think if God wants me to learn something, I better learn it fast, haha!" "It won't help me get better to sit and feel sorry for myself about it. Yeah, good for me. I'm doing well."
Well, here's a confession for you, bloggies. I'm not handling this very well. I am depressed beyond belief and cannot bear to think about another poke and prod in the next few days. I put on a brave face for all these medical tests, but I HATE needles. I have been doing really well with all of it, gritting my teeth. But I don't want to be put on a drug that will force me to inject myself every day. I can't fathom having to do that, but that's where I'll be, since Gilenya is basically just a band-aid until my next neurologist puts me on something stronger. This is terrifying, I feel weak and unprepared for life. I spent so much money and time being told that I was destined for great things, and now I feel like giving it all up. I feel like running away. HA - running. I made a running joke. Get it? Because now that I have had this last exacerbation, I can't feel my feet anymore at baseline. Makes running really difficult. HA HA HA HA HA.
This bloody sucks. I graduate tomorrow and I don't even care. I want my family to celebrate without me. Why do I need to be there again? My wedding was a cheap bust of a party, so I have been 'planning' a grand graduation celebration ever since. The MS diagnosis really screwed that up, because now we don't have the money, the friends, the space, etc. We are going to have a backyard barbecue at my mom's house, decided yesterday. She is upset that my dad will be there. It's a family event. My husband is graduating too, so his giant clan of a family will be there. They all have small children. My mom has dogs. It's turning into a mess really fast. I don't want to go. I want to run away, I want to see the new Hiddleston movie again, I want to pretend that someday a good looking British man will look at me and tell me that I'm pretty. I don't want to feel like the ugly reflection I'm seeing lately, with dark blue-circle eyes from no sleep and poor diet. I can't afford to eat better, I've had my last paycheck. I feel like an observer in my own life right now, unable to tap in. Why can't I tap in?
Thanks for listening, bloggies. Until next time.
I am steeped in quite a pit of depression right now. It is somewhat seasonal, and I can't say I'm surprised, but it is coming at a very bad time.
I had another MRI about a week ago, and the insurance didn't cover the brain, only the cervical/thoracic spine. Those are apparently clear, but then it doesn't explain why I get the shocks when I move my neck forward. And does this mean that my neurologist can't get a report on the brain, even though they took the images? How does that make sense? If I had to sit in the MRI machine for 2 hours and have a bruise on my arm as a result of a botched infusion of the gadolinium, don't I deserve to know what the heck is going on in my brain?
I'm supposed to start Gilenya next week. I was supposed to start it today, but didn't find out until the end of last week that I needed to have a lot of pre-tests done before. Called by the neurology MA - 'You will be hearing from this nurse to get them scheduled.' 'Okay, thanks, I will get them set up.' Wait a few days, hear nothing. Call back about the eye test - still no word. EKG and blood test? Still nothing. Call the neurology MA again, feel like I get in trouble for not having it done. But you told me they would call me? Okay, I'll find a place to do it. Okay, we'll move the start date a week out. You know I'm supposed to move here right? Okay, I'll wait to hear from them. What's that? That eye place doesn't want to do that test, they need to refer me out again? Okay, I'll wait. Oh, now you say I have to set up the other tests. Fantastic. I'll do that - oh, wait, no, on the day those are set up the nurse finally calls to get them scheduled at a different place so I don't have to pay for it. Well, seeing as I'm broke and now have bills to pay, sure I'll take you up on that. Haven't you done this before? How am I supposed to know how this works? Okay, I'll do that then. Eye test today.
Did I mention I'm graduating tomorrow?
I am so unbelievably stressed out. I feel like I'm having another exacerbation in the middle of all this. I am having the MS hugs so frequently that I don't want to eat, which makes it worse. I'm not feeling as tingly, which is good, but that changes by the hour. I feel like crying all the time, and finally started now that I'm not at work. I finished my internship yesterday, and now I have to jump right in to finding a place to live on the other end for my new job. The new job! It starts in a month. I am not ready. I need a break. I have no time for a break, now I have to pack to move. I have no energy.
This feels like a spiral. I can't get a hold of anything. There are so many things I want to get done, I need to get done, in the time before we move - and I just can't find the time to do it. Now my husband keeps asking if I'll fly out to California to find a place to live soon - when am I going to do that? Why do I have to do that by myself? Oh yeah, because I'm broke. Because there's no good way to end up in this situation, but this particularly sucks. I have no one, I feel so alone, I feel like there are so many people in my husband's life who are not uncomfortable asking him how he's feeling but no one wants to find out how I'm handling it. So, as a result, the few times I do get asked I end up lying - "I'm doing okay, it's stressful but I'll get through it." "I think if God wants me to learn something, I better learn it fast, haha!" "It won't help me get better to sit and feel sorry for myself about it. Yeah, good for me. I'm doing well."
Well, here's a confession for you, bloggies. I'm not handling this very well. I am depressed beyond belief and cannot bear to think about another poke and prod in the next few days. I put on a brave face for all these medical tests, but I HATE needles. I have been doing really well with all of it, gritting my teeth. But I don't want to be put on a drug that will force me to inject myself every day. I can't fathom having to do that, but that's where I'll be, since Gilenya is basically just a band-aid until my next neurologist puts me on something stronger. This is terrifying, I feel weak and unprepared for life. I spent so much money and time being told that I was destined for great things, and now I feel like giving it all up. I feel like running away. HA - running. I made a running joke. Get it? Because now that I have had this last exacerbation, I can't feel my feet anymore at baseline. Makes running really difficult. HA HA HA HA HA.
This bloody sucks. I graduate tomorrow and I don't even care. I want my family to celebrate without me. Why do I need to be there again? My wedding was a cheap bust of a party, so I have been 'planning' a grand graduation celebration ever since. The MS diagnosis really screwed that up, because now we don't have the money, the friends, the space, etc. We are going to have a backyard barbecue at my mom's house, decided yesterday. She is upset that my dad will be there. It's a family event. My husband is graduating too, so his giant clan of a family will be there. They all have small children. My mom has dogs. It's turning into a mess really fast. I don't want to go. I want to run away, I want to see the new Hiddleston movie again, I want to pretend that someday a good looking British man will look at me and tell me that I'm pretty. I don't want to feel like the ugly reflection I'm seeing lately, with dark blue-circle eyes from no sleep and poor diet. I can't afford to eat better, I've had my last paycheck. I feel like an observer in my own life right now, unable to tap in. Why can't I tap in?
Thanks for listening, bloggies. Until next time.
Saturday, March 29, 2014
An Open Letter to Unsolicited Advice
I know you're trying to make me feel better. I think it's great if someone you know or someone you know knows someone else who tries XYZ to keep theirs at bay. You're one of the few people IRL that knows about this problem, so of course you feel the need to downplay my 'type' and tell me that it 'isn't so bad.'
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
Sunday, March 23, 2014
Bad News or Good News?
My name is Margo. I'm 25 years old. And less than one week ago, I was officially diagnosed with Multiple Sclerosis, or MS. I prefer to call it my brain's "self-destruct button."
Why am I writing a blog? Because MS is scary, and I'm a scientist. I learn best by writing things down, reading more things, then writing things down again. I hope that my experience can help some people find comfort, or even push those who have questions to seek help. I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.
Okay, that's kind of a lie. I had an inkling. A clue. A suspicion. But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'
And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib: "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.' But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."
All of these statements imply a few things. It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something. It implies that MS is the same for everyone. It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.
I am a religious person. But God did not 'give me MS.' I did not 'give myself MS.' What a ridiculous idea. I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of. I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related? What doctor would think I'm not nuts? And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.' That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down. And she thought not eating breakfast was the problem. HELLO?! THIS STARTED YESTERDAY! NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!
Ahem. Clearly I've had a lot of time to be mad at doctors. But I digress.
In 2010, I started having a rash of interesting symptoms. We're talking, first day of January-ish. In December, I noticed that I was having bad mood swings, and my eyesight was really degrading. I couldn't read the TV guide on the screen, when a week before it looked crystal clear. Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches. Turns out, my vision was shot. I had astigmatism, which clearly is genetic as everyone in my family wears glasses. But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.
Then came the nausea. I thought it was the new birth control, and I immediately got off that. Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus. So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way. Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI. But I knew something else was wrong, maybe that was it.
The nausea didn't stop. But the anxiety became unbearable. My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing. But I got married five months before in August, and my best friend and I had a falling out around the same time. My family disapproved of the marriage and I was starting a religious journey at the same time. I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing. I hated my job. My classmates conspired to make me fail because I was accepted early into the grad program. I was surrounded with stress. Why would I be surprised with some anxiety? Some shakes ... that might be normal. Hey, I'm a musician, maybe I overworked my hands. I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers. I was off balance sometimes. Seemed unrelated. And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.
Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions. We talked about it every day. And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter). The MS profile looked a lot like what I was dealing with. But I ignored it. And kept moving forward. For six months, I felt like crap every. single. day. And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.
....
Fast forward to mid-February this year. I had been dealing with some episodic issues that threw me back into feeling like an undergrad. Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling. But no one said I looked odd or pale. My vision seemed to go in and out from great to crappy, but would go back again. I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.
What I noticed was the stomach pain. It was more like a torso pain. Intermittently, I would feel like I was being squeezed like a vice. Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing. Unpredictable pain. And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.
I will never forget that Tuesday. I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster. I spent the entire day cleaning. I cleaned every room and did laundry. I don't do things like that when it hurts to move - but I did it anyway. I couldn't relax when my place was a mess. My husband came home and I told him my back hurt; a usual hip pain I've gotten used to. We went to bed, I intended to go to work the next day no issues, and the day was gone.
But at 4 AM, I woke up to my husband's loud snoring. And I noticed that my left leg felt ... numb. It felt asleep. Like a pinched nerve, or cut off blood flow. I had done a lot of work and my hips hurt before bed, so I turned over. By 5 AM, there was no change. And again at 6, when my alarm went off. No change at all. My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done. Just ... nothing. Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.
I go to school for heavy duty neurological stuff sometimes. I am slender, not diabetic, and couldn't have hurt my back without knowing it. But I know how upper motor neurons work. And I knew when I woke up on Wednesday that I was in trouble.
I casually mentioned it to a coworker. She shrugged at me, thought it was nothing. Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance. Thursday the numbness felt worse, stranger, more debilitating. But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched. Just the sensation was off. I could move them fine. I could drive. I could feel enough of my right foot to feel safe doing that. I called a neurology office and got to answer. How long until this became a problem?
Friday morning, I couldn't ignore it any more. I called in from work and went to the ER. A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began. That was the last day of February, and it was confirmed last Monday that their suspicion was correct. So yes, I've had many weeks to process the possibility. But the strangest part? I didn't cry in my appointment. I was not surprised. I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name. I knew what was going on, but no one had believed me. It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.
How could they? You can't see my self-destruct button. Only I know it's there. I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem. It might not be MS, it might be nothing at all. But don't wait - no one deserves to feel miserable and think they are crazy.
You are not crazy. Maybe you have a self-destruct button, too.
Until next time,
Margo
Why am I writing a blog? Because MS is scary, and I'm a scientist. I learn best by writing things down, reading more things, then writing things down again. I hope that my experience can help some people find comfort, or even push those who have questions to seek help. I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.
Okay, that's kind of a lie. I had an inkling. A clue. A suspicion. But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'
And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib: "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.' But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."
All of these statements imply a few things. It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something. It implies that MS is the same for everyone. It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.
I am a religious person. But God did not 'give me MS.' I did not 'give myself MS.' What a ridiculous idea. I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of. I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related? What doctor would think I'm not nuts? And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.' That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down. And she thought not eating breakfast was the problem. HELLO?! THIS STARTED YESTERDAY! NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!
Ahem. Clearly I've had a lot of time to be mad at doctors. But I digress.
In 2010, I started having a rash of interesting symptoms. We're talking, first day of January-ish. In December, I noticed that I was having bad mood swings, and my eyesight was really degrading. I couldn't read the TV guide on the screen, when a week before it looked crystal clear. Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches. Turns out, my vision was shot. I had astigmatism, which clearly is genetic as everyone in my family wears glasses. But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.
Then came the nausea. I thought it was the new birth control, and I immediately got off that. Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus. So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way. Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI. But I knew something else was wrong, maybe that was it.
The nausea didn't stop. But the anxiety became unbearable. My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing. But I got married five months before in August, and my best friend and I had a falling out around the same time. My family disapproved of the marriage and I was starting a religious journey at the same time. I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing. I hated my job. My classmates conspired to make me fail because I was accepted early into the grad program. I was surrounded with stress. Why would I be surprised with some anxiety? Some shakes ... that might be normal. Hey, I'm a musician, maybe I overworked my hands. I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers. I was off balance sometimes. Seemed unrelated. And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.
Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions. We talked about it every day. And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter). The MS profile looked a lot like what I was dealing with. But I ignored it. And kept moving forward. For six months, I felt like crap every. single. day. And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.
....
Fast forward to mid-February this year. I had been dealing with some episodic issues that threw me back into feeling like an undergrad. Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling. But no one said I looked odd or pale. My vision seemed to go in and out from great to crappy, but would go back again. I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.
What I noticed was the stomach pain. It was more like a torso pain. Intermittently, I would feel like I was being squeezed like a vice. Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing. Unpredictable pain. And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.
I will never forget that Tuesday. I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster. I spent the entire day cleaning. I cleaned every room and did laundry. I don't do things like that when it hurts to move - but I did it anyway. I couldn't relax when my place was a mess. My husband came home and I told him my back hurt; a usual hip pain I've gotten used to. We went to bed, I intended to go to work the next day no issues, and the day was gone.
But at 4 AM, I woke up to my husband's loud snoring. And I noticed that my left leg felt ... numb. It felt asleep. Like a pinched nerve, or cut off blood flow. I had done a lot of work and my hips hurt before bed, so I turned over. By 5 AM, there was no change. And again at 6, when my alarm went off. No change at all. My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done. Just ... nothing. Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.
I go to school for heavy duty neurological stuff sometimes. I am slender, not diabetic, and couldn't have hurt my back without knowing it. But I know how upper motor neurons work. And I knew when I woke up on Wednesday that I was in trouble.
I casually mentioned it to a coworker. She shrugged at me, thought it was nothing. Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance. Thursday the numbness felt worse, stranger, more debilitating. But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched. Just the sensation was off. I could move them fine. I could drive. I could feel enough of my right foot to feel safe doing that. I called a neurology office and got to answer. How long until this became a problem?
Friday morning, I couldn't ignore it any more. I called in from work and went to the ER. A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began. That was the last day of February, and it was confirmed last Monday that their suspicion was correct. So yes, I've had many weeks to process the possibility. But the strangest part? I didn't cry in my appointment. I was not surprised. I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name. I knew what was going on, but no one had believed me. It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.
How could they? You can't see my self-destruct button. Only I know it's there. I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem. It might not be MS, it might be nothing at all. But don't wait - no one deserves to feel miserable and think they are crazy.
You are not crazy. Maybe you have a self-destruct button, too.
Until next time,
Margo
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