Living with Multiple Sclerosis

So some friends and family have been pushing me for the past 2 years to write about this, not something that I’m overly fond of, as MS does not define me, but there insistence that this might help someone else has merit. I know this is a very long post, but I only intend one post. So here we go:

I always hate when I see a TV show or movie make MS out to be some really big, bad thing, because thats not how I think of it. Sometimes I am even grateful, though I wish something else would have come a long and gave me the kick in the ass that I needed to WAKE UP. Before MS I was in a relationship with a lazy alcoholic, I was severely overweight, I got up, went to work in a miserable job, went home, watched TV and that was about it. I did the occasional trip, occasional art piece. I always has ambitions, but never followed through. So the events leading up to MS, first off if you suddenly loose capabilities that are nerve related, see a doctor. A few years before my major episode I lost vision in one of my eyes, I was young and didn’t have health insurance, my mindset was that I wasn’t going to pay for something I never used. So, when my vision started to fade I went to get glasses, thinking it was simple, most of my family uses them. The lady who did my eye exam said that my issue was not vision, but something wrong with my brain. She said it almost like that, freaked me out to no end. Over the course of the next few days I was scrambling to do something, thinking the worst, like a tumor or something. I got a discounted MRI with a pay plan on the cost, got my MRI, which was a first but definitely not the last time I’d get one, and hoped for something. The doctor I had been seeing said she needed to refer me out to a Neurologist, now keep in mind, at this time between doctors visits and MRI’s I had already shelled out over $1000, now it doesn’t seem like an astronomical number, but my 22 year old brain was thinking of my barely scraping by job. My vision also came back during this process, so, in my brilliance, I decided if my vision came back, there was nothing to worry about I was good to go.

Years later, I think I was 24, I slowly took a turn for the worse. It started with little things, I would loose feeling like parts of my body were going to sleep, my leg would thump on the ground when I was sitting down. I started to feel very very sick. I could not keep anything down. I started to loose balance, I worked in a. call center and it must have been kinda funny to see me ping-ponging from desk to desk, using them as balance and a goal to get to, because my stubborn brain refused to consider anything like a cane or such to help. My back started to hurt, the pain kept me half bent most of the time. I had health insurance, so once it became obvious there was a problem, I went to see a doctor. Now, keep in mind, my bitterness towards doctors int his post is based off of my experience. The doctors didn’t know anything! Seriously, one kept coming back to my weight, one basically said suck it up, get over it. I don’t know what is wrong with them, maybe they are so burnt out they don’t even try. Granted, MS can be hard to diagnose, but really? Not even a little effort to try to figure out what is wrong? I kept telling them, months before I was not like this, it came on over the space of months, which is not a natural progression of unhealthiness!

So for months I’m trying to figure things out on my own. Now when you try to self diagnose, you come up with all sorts of causes and illnesses. It sucks, almost everything leads up to cancer or some other really big, life threatening disease. So its been over a year of this, I switched jobs and they set up health insurance which moved me from Saint Mary’s to Renown. At this time I have ridden a roller coaster of ups and downs, I’d get a bit better, then I’d get worse, better worse and so on. So I scheduled another doctors appointment. This doctor took my claims half serious, she scheduled me for an MRI of my lower back, as that was where most of the pain was. The MRI came back with minor scoliosis so she wrote off my illness as just overall unhealthiness, keep in mind I was pretty overweight, I think I weighed like 270 or 280 at the time… So she scheduled me for physical therapy to build my core muscles and sent me on my way. Physical therapy was very expensive, my health insurance barely covered it, but thankfully I went, I budgeted, maxed out credit cards and went. I was sick of feeling this way, the pain really was becoming unbearable. A couple month into my physical therapy I really slid into what was going to be rock bottom. I started loosing the ability to walk, again this is gradual, sneaky, almost like the days getting shorter and shorter moving in to winter, almost indistinguishable until you look up one day and realize it is dark at 6 pm. My right leg went first, which sucked because that was my driving leg, but my stubborn brain refused to quit driving, I used my left leg and a lot of cruise control, not my most intelligent decision but I scraped by, until my left leg started to go. I lived in an upstairs apartment, I  had perfected this odd walk that was basically swinging my leg from one side to the next to get up those damn stairs. But when my left leg started to go it became harder and harder.

One of my saving graces here is that I now worked for my step dad, I didn’t have to deal with any red tape to get time off for doctors appointment, I could prop myself up on a couch when I felt to sick to sit up and work off of a laptop. I earned my keep, I never slacked and took very few sick days, but working for family was one of the things that got me through this. At this time my physical therapist switched as well, I had been seeing them I think for a couple months, and while the advice was good it wasn’t really helping me. I was trying everything at this time, acupuncture, spiritual healing, nutritionists, anything and everything. My new physical therapist, I really wish I could remember her name, looked at me rather oddly after about 10 minutes of work. She told me to hang on for sec, left and came back with another physical therapist. They both watched me stumble around, asked me questions, and then tested something in my hands. He looked at her and nodded, then he explained to me that there was something wrong with my nerves, and that it centered around something in my upper spine, around the neck area. Huh, I thought, ok well what does that mean? Well they set up a referral for an MRI and told me to follow up with my doctor as soon as I got the MRI on my brain and upper spine done. So I went through another MRI, you’d think at this point I had reached my OOP, but no, another $700 later and I waited for some news.

A couple of weeks later I got a call saying they got my MRI results back, I had a demyelinating disease that could possibly be Multiple Sclerosis and I needed to see my doctor ASAP and get scheduled with a neurologist. I hung up the phone shell shocked, I had no idea what these things were, I honestly had never heard of MS or if I did I never really registered it. I was in tears as I tried to explain to my mom what they said. My mom is someone who helped me through this nightmare, she was a rock, but she is also really really intense. If you have ever seen 50/50, great movie, the was dealing with cancer, his mom in that movie is kinda like my mom, really really intense. So I scheduled the appointment with my doctor and tried to suppress things, googling MS kinda helped, but it seemed like this really big horrible thing.

By this time I had developed foot drop, which is when your foot drags on the ground, my mom and found this odd boot for some other condition to give my foot something to stabilize it, my toes were constantly torn up because I couldn’t stand wearing tennis shoes, I could barely feel my feet and shoes made almost impossible to walk. The boot helped, and crutches, because again my stubborn brain refused things like canes and walkers….that was for old people and dammit I wasn’t old, least thats how my brain worked. So I dragged my happy ass into the doctor and she had the gall to look at me and say, ‘you know when you first came in, I knew there was something going on, I just knew it’. Yeah, really lady? Anyway, she goes on about this MS disease, and yes my MRI’s seem to indicate it could be that. She seemed excited, like she had stumbled on something interesting, it made sense later, but I was pretty shell shocked at this time, just trying to get through each day. She scheduled me for  a neurologist appointment and off I went, it was funny though, suddenly she was all nice and consoling where months before she couldn’t be bothered.

Another fun fact about this time, is that my boyfriend of the time didn’t have a job…. Yep, I look back and kinda smack myself for this, especially since his brother lived with us and couldn’t maintain a job to save his life. I was ok with it at the time, keep in mind I was shell shocked and numb. And having someone to take care of the dogs while I was working was one less stress, that and in my pitiful brain I felt like the burden because I was going through so many medical issues, pretty pathetic when I look back. Especially since he was a total alcoholic… But he did help me on an emotional level for the most part, or maybe that’s me trying to make excuses.

Anyway, so my doctor sends me to a neurologist, Dr. Jorge, I will never forget this guy because of how much of a pompous ass he was! Seriously, I am sitting in the little room with my Mom and, lets call him my ex, for twenty minutes when he strolls in. He looks at me and says there’s nothing wrong with me. Seriously, he didn’t even look at my chart or record. He made this assumption because apparently my current doctor was notorious for sending false alarms to him. My shell shocked brain perked up, ‘Really, nothing wrong? oh thats a relief!’ Until a second later I remembered I could barely walk. My mom, it was funny, you could almost see steam coming out of her ears. I started to cry (that’s my response to extreme stress and anger, I really hate that response), but I also kinda laughed because of I could see this cartoon in my brain of my mom turning bright red in anger. She spoke very slowly to the doctor, almost as if she were to speak quickly she would snap, and asked him very politely to please check my records. He sat down and it was kinda comical to see his eyebrows climb higher and higher, then he turns around and admits that yes, there is something wrong with me. I felt a little macabre victory, and refrained from a childish ‘duh’. Anyway, he reviews my charts, my mom is on the victory war path of self righteous indignation, which was kinda satisfying to see him getting more and more flustered but not really helpful,. So he goes on a lengthy jargon talk that I couldn’t really follow and says that the damage to my spine is to large to be MS, and is more likely NMO. The good news, I don’t need a spinal tap (not the correct medical term but sums up the procedure), a simple blood test will suffice. The downside to NMO is that it is harder to treat than MS, my shell shocked brain took control and I sat there nodding, storing the information for later when I could better process.

So, I go get the blood tests and wait a couple more weeks. At this time, I had other things going on. I remember when my ex decided to go on a camping trip with his friends, I was devastated, my people pleaser mindset kept telling him, ‘it’s ok, it’s ok, go’. But it wasn’t I wanted to go so badly. My mom did everything she could to help me and cheer me up, but I had hit a funk. My ‘is what it is’ mentality was wearing thin and my coping mechanisms were malfunctioning. This was all before the neurologist. When my ex had gone camping I stayed at my moms for the weekend, she did everything to cheer me up, but I just couldn’t get out of my funk. Then the day I was supposed to go home, I fell on the ground and could not get up. Really, my arms were to weak (another nasty thing about this episode, the overall weakness and fatigue). Drew, my step dad helped me up, and he looks at me and says, ‘you do not get to go home, you cannot manage those stairs, your moving in’. This is where my brain put on the brakes and said nope, cannot take anymore. I irrationally fought him on it, seriously, like a petulant teenager I yelled and cried and said ‘no I’m not moving in’. I think it was my mind fighting one thing that I might have a hope of winning, like one small victory would make me feel better. I was overruled.

So me, my ex and his brother move in. This was may or June, and I’m working 9 plus hours a day at the tow shop, managing and dispatching, billing doing everything I can to keep my mind off of what was going on. This left my ex to pack and move everything, keep in mind I was in no condition for this, and again, my mom helped with everything, packing, cleaning etc. But my ex had the gal to throw a fit because he was having to do everything. Seriously, he hadn’t been working for months! He was supposed to be enrolled in school, getting a part time job, and working his ass off to build a better future. That was the plan at least. But his lazy ass stalled so long that he missed spring enrollment, then summer enrollment and even fall enrollment! Seriously, all he wanted to do was drink…. If I sound bitter, remember I basically can’t walk. I even got a wheel chair, because at this time my left leg  had degenerated so much that I could barely stand. This ruined baths for me, I really used to enjoy them, but when that’s all you can manage they loose any relaxation, because I could not get in or out of the tub on my own, so I had to use the low to the ground tub with no shower option. It sucked! Add into that barely being able to keep down food and some pretty intense back pain and my ‘life is what it is’ mindset was worn down to the breaking point.

I go back to the neurologist and that asshole (can you tell I really did not like the guy) comes back and says, ‘your blood test came back negative, so its probably not NMO, probably MS but we need to do a spinal tap to  be sure’. He didn’t even call it a ‘lumbar puncture’, which I guess doesn’t really sound any better. So he tells me before, don’t worry, we won’t have to do this, then he tells me we do have to do this! This was mid June, I’m still in a wheel chair, almost begging him to please at least give me steroids, which is the MS treatment. We know its probably MS, please treat it, I cannot take it any more. Nope, off I go to a spinal tap. A week or so later I go in, I hadn’t really researched it, so I didn’t know what to expect. Probably a good thing because I would have probably refused. Seriously, worst thing ever! They cannot numb your spine, they can really only numb the skin. When that needly hits the spine the pain is so back your brain locks it away, I remember white hot pain, but my brain has lessened it, made it seem less real. I never, ever want to feel that level of pain again. So I’m done with it and they tell me make sure to lay flat for 24 hours, otherwise I will get a really, really bad headache. I follow there rules to a T, I lay completely flat (understandably didn’t go back to work that day) and any time I try to be in a position other than completely flat, instant migraine. Seriously, worst headache you can possibly think off, vision blurring sheer pain. 24 hours later, it didn’t go away.

I put up with that for a days, I was laying flat on the couch at work, dispatching from a phone right next to me and working off of a laptop. My brain decided the best solution was to carry on, keep working and don’t think about anything complicated. The only reason I did not go to the emergency room is because I had my follow up neurologist appointment a few days after the spinal tap. They roll me in there, delirious from the headache because I am not completely horizontal, and Dr. Jorge says, ‘yep it’s MS the spinal fluid confirms it.’ If I had been in less pain I probably would have said ‘no shit Sherlock’ but sadly I wasn’t up for snappy comebacks. He says that he can send me home with steroid pills, or he can admit me to in patient and give me a 3 day intense steroid treatment. Hmmm, choices choices, I was barely conscious from the headache so I chose the shorter fix. Massively expensive, $2000, but I didn’t care, I wanted to be better, I would figure it out later. They admitted me that night, 2 hours later, which when sitting upright is agony, seems like forever.

I don’t really remember that night, I remember that it took them 6 tries to get the stupid needle in my arm, they tried both, so I had needle bruises all over my arms. I remember they gave me something to help me sleep, and thats about it. The next morning, this day two of steroids as they had started the night before, the headache was gone and I was actually starting to feel better. If you’ve never been on steroids, they make you feel like you can conquer the world, it’s great, but also bad, because it kinda puts a stop on limits, so its really easy to overextend. So throughout that day I got the bags filled with medicine, that night I was woken up every 3 hours for blood tests and ‘you still alive’ check ups, which sucks. But by the third day I could feel my feet! I could walk, I could move my toes! I remember how happy I was when I was first able to move my toes again, it really is the little things that we take for granted that have the biggest impact. Never mind that the horrible headache was gone, never mind that I could keep food down again, nope my brightest moment is wiggling my toes.

They kept me in there for far longer than I would have liked. A few days after I was able to walk again, I was getting so stir crazy. I went in on a Monday, June 30th, and by the 3rd I was itching to leave. I had energy for the first time in a year, I felt exuberant, light so full of life. They kept insisting that I should go to a short term care place, that I needed more physical therapy. But by the 4th of July, I was done, I told them to check me out I could figure it out on my own. This could have been the steroids giving me false strength, dunno. So I checked out, went back to my Moms, promptly found an apartment on a ground floor (my ex kinda sucked at things like finding apartments, managing bills, etc…) and moved in. By my birthday, August 4th I was back in charge of my life, in a new place and starting to reexamine everything now that I had a chance to process.

The hilarious thing is, shortly after my release from the hospital I was driving again, got carried away with it, and promptly got a speeding ticket. I might have gotten out of it if I had explained the circumstances, but I knew I had done wrong, 95 miles per hour to pass someone was excessive, so I sucked I tup and moved on. But the even more hilarious thing was soon to follow. For my birthday weekend, my birthday is August 4th, I wanted to go beach camping. I wanted to listen to the water at night, drink to much, and live! So we went camping at pyramid lake, beautiful place but I have this love hate with it now. The first night there, August 3rd, I was in the water, slipped really bad on some clay, my feet went out from under me, and I fell just right to break my right ankle really really bad. I mean the bruises were awful. At this point I couldn’t help but laugh, it’s one of those ‘you have to laugh to keep from crying’ moments. Seriously, a month after the hospital, right when I’m able to walk again, I break my freaking driving ankle! I had to call my mom and Drew to help, because we had gone down this little hill to get to the campsite and there was no way in hell we were getting back up with my broken ankle without help. I was in denial, I kept saying, it’s just a really bad sprain, its all good. I get back home, pass out and the next morning my ankle is swollen and a deep dark blue. So I spent August 4th, 4014, my birthday, the day that was supposed to be mu lease on life, my bright and shining gateway into living again, in the urgent care. Pretty funny when I look back on it.

So that’s my story, and this really is the only post about this, I might drop bits here and there about things I deal with daily, if they have relevance. But this ting does not define me. I don’t have disability, because I do not need it. In some ways I am grateful. This was my wakeup call. This was my reminder that life is short. You are not promised tomorrow. You are not promised that every day you will be able to live as you like, live with full function of your limbs. I am lucky though, 20 years ago they could barely treat this thing. So many more people have it worse, I have heard stories of people that wake up blind, no cure for it, or are unable to move limbs and steroid treatment is unable to help. So I am thankful, because it really could be so much worse.For me, MS means know when I get to tired I need to take a break, taking a pill every morning and night that makes my skin burn but helps keep the symptoms at bay. Dealing with pain, but thankfully I have a high pain tolerance and do not take pain meds. It really is what it is. I got healthy, I dropped a lot pos wait, I eat right. I’m a great cook, I just changed to quality ingredients, making anything I can from scratch, and cutting out anything that has preservatives.

Thats my story of how I got to where I am at now. Now I live. I left the relationship that was poison. I workout., I camp, I fish, I hike, I do things that I used to make plans for but never followed through on. I moved to a nice little house with a yard for my dog. I have a fulfilling job that I truly love and hope to maintain when I hit the road. Check out my freedom plan for details on the future. A year ago was so much different and better than the year before, this year is a hundred times better than last year, I can only look forward to what the future has to bring! And if anyone else with MS out there and wants to talk, email me, I’m always up for listening.

One thought on “Living with Multiple Sclerosis

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