It took my 38 years, 6 months, and 27 days to get here. I don't recall everyone being there all 15,697 days (give or take) so perhaps a story is in order, which is a good thing because I LOVE telling stories... but this is less fairy tale than I'd like.
Oh a bright and shiny, cloudy and rainy, scary hurricane/tornado day (choose one because I don't recall the weather that day) in Georgia I came into this world... I was a gigantic baby- 137 pounds or so. My mother would disagree with that number. I was child number 2. I was a wild one. My mother would NOT disagree with that...
We did not stay in Georgia as the my dad had packing orders, so off we went to Germany. We stayed until I was about 7, then moved to Colorful Colorado. Just as an aside- I have no idea why they call it 'Colorful' Colorado. There is Pine Tree color and red clay color, and that's it. My parents chose to live in a small town called Woodland Park. It's about 8, 500 feet in elevation. No color, and no air. But when you're a kid growing up in a small mountain town you don't miss grass, or heat, because you've never had it! So in the mountains I stayed. I stayed for primary and secondary school. I stayed in Colorado for college (and discovered there are places in Colorado that actually have grass!) and I stayed for graduate school.
I met my future husband in Colorado, had my one and only child in Colorado, and continue to live in Colorado Springs. And I have grass.
Well who gives a shit about all that? The medical field does actually. I'll get there tho. I'm not quite up to 38 years, 6 months, and 27 days yet.
We are up to post grad school now. I studied Counseling and Human Services. I chose to take the School Counselor path and work in schools. I love the middle school aged students the best and tried to get a position in a Middle School but alas there was nothing available. I landed my first job at a 'walk-to only' elementary school. That means that there is no bus service for those kiddo's. It was a great way to get to know the parents tho, so I used it to my advantage.
During that year I was full of optimism, life, hope and encouraged that I could make a difference in the lives of these kids. Then the stress hit. I'll just say that the conditions at work jeopardized my safety, and the safety of my family. I left with one month to go in the school year, and looked for another opportunity. It didn't take long for it to come knocking either.
There are 2 very affluent school districts where I live. My next job was at one of them. I was THRILLED! I wasn't going anywhere! This would be where I'd stay for my career! I had made it to the big leagues! And a good ole boys club as I later found out. I am not equipped correctly to belong in that club... and the stress hit.
April, 2009 my neck hurt. A lot and all the time. I got an MRI, they saw something on it. A nodule on my thyroid. Fine. Got a biopsy. Massive allergic reaction to the Chloroprep stuff they use to sterilize skin with before a procedure. They later spotted some kind of shadow near my spine, so it would be a good idea to get another MRI. Fine. Then my chest went numb. Man was that weird. I would go to work, kid about it, and go on my merry way. You see, I had my girls chopped off because they were a wee too hefty for my frame. At that time I was a buck 50. So I thought it was funny to say they were retaliating, protesting, whatever... about removing more than a pound from each. Har Har. Then my back went numb. But only in the spot where a bra would rest. So I had a numb bra area? How bizarre is that. I really didn't think much of it. I was the only person that felt that way tho.
My mother and husband got to the point of demanding I go to the ER. Fine. I'll go. Waste my time. Bah. In I went. They poked me with safety pins. It hurt, but I couldn't feel it. Talk about weird. Here's what the ER doc said to me "Numb won't kill you and there's no medication for it. I recommend you see a neurologist." Dammit. Fine. Pfft. Last thing on earth I want to do. Shit hit the fan at work, for a variety of reasons, and then my entire body went numb. It was like my entire body was encased in thick concrete. Fine motor skills- gone, gross motor skills- going rapidly, pride- gone, fear- through the roof. Along with the awesome rash I had, I now had a lump in my throat, couldn't brush my teeth, wipe my own ass, eat, dress, brush hair, nothing... Great. Now what? Go to the neurologist!
I might as well have seen a troll, or a mechanic, maybe a cleaning lady, a flight attendant maybe? Most unhelpful man in the universe. His partner tho is one of the most sought after neurologists in the state. I didn't know that then. After much arguing I was finally able to convince the guy that I didn't want a bunch of tests without treatment, I wanted treatment and I'd go along with whatever damn test he wanted. Enter Spinal Tap.
First Spinal Tap- here is what they did not explain to me- when your body is crazy out of control like mine was that makes your nerves hypersensitive. So when that 47 foot long needle went into my back (same doctor as the thyroid by the way) I was not prepared for the amount of pain that would coincide. With a spinal tap blood is also drawn for various reasons I can't recall. Guess what the hospital forgot to get? Guess who had an invalid spinal tap result?
Since I was freaking out because I couldn't feel anything except my face, I couldn't hold anything, couldn't drive, couldn't wipe, eat, wash, etc. the 4 day at home steroid treatment was challenging. Poor Dan. He deserves a medal. I did what I could and ask for help when I needed it. Which was always. I give him kudos for not firing me. Boy was I a mess. Since shit hit the fan at work I was able to stay home for about one month. Which was nice because no one at work new what had transpired with my health anyway.
I fired the unhelpful troll and found myself a new neurologist. She was worse than he.... I had millions of questions. I had no idea what was going on with my body! No one was telling me anything, and as the owner of my body I feel I'm entitled to know. My primary care doctor was fabulous! He was all over the place getting me tests, treatment, seeing me, holding my hand, and encouraging me through this thing. He deserves a medal too. Let's just say that with any question I had for the woman neurologist I was handed a 600 page book, or CD. Bitch, I have no fine motor! How am I supposed to turn the pages! Primary Care doctor and I talk and he wants me to see the early mentioned neurologist because he is the absolute best. One problem, I saw the troll guy already. Their practice states that they won't see each others patients, and they won't allow patients to switch doctors within the practice. Enter my primary care doctor- he made it happen. I now see the best neurologist in the state. And he is fabulous.
Now I know I have MS, not transverse myelitis or any of the other things they thought possible. This from seeing the new guy, Dr. Fabulous, after being hospitalized for passing out while I was driving my family to Easter dinner at my parents house. Those of you who have no clue what it's like between here and there- it's a mountain pass complete with cliffs, drop offs, winding roads, the whole nine yards. So I passed out. My head felt like it was going to explode, my vision vanished, went into anaphalaxis, and I was out. I woke up with the worst migraine ever known to man. I spent 3 or 4 days in the hospital. Dr. Fabulous decided that since my first spinal tap was botched that I should get another one since I was there (oh yay me). Not nearly as bad that time. My diagnosis- ??? They had no idea why I blacked out. The result- severe anxiety for me to be alone.
My poor kid. She needs a medal too. I drilled her. I had her practice. I gave her scenarios and she had to play them out. She hates that shit. She did it tho. She had to know how to call 911 from my phone and what to say. There was no way I was going to have her feel completely helpless. So I went neurotic on her. Maybe she gets 2 medals. Primary doc put me on anti-anxiety pills. Then on mood stabilizers. I was freaking out. 2 weeks later, it happened again. This time while I was at work. I got rushed to the emergency room. This time I was covered in hives. HIVES! That was a huge clue! Turns out I'm allergic to NSAIDS- you know, Advil, Aleve, Ibuprophen, that sort... Totally unrelated to MS. Off the mood drugs and the anxiety pills I went! Hooray!
All that freaking out left me jumpy. Stress is a major contributor to flare ups. So I would flare up now and then. Any time I felt a weird sensation I'd be in to see my primary doc, because Dr. Fabulous is so booked up it matters not if you're having an emergency... So over the course of a year I was put on steroids about a dozen or so times. Not including the IV steroid drip I initially had. Over the course of my first year with MS I put on 80 pounds. That's right. From a buck 50 to 'Sonja, I didn't know you were pregnant?!" "I'm not" "Oh, quit lying, is it a boy or a girl?!" That is an actual conversation I had when picking up my kiddo from school one afternoon. People suck. She hunted me down later and kept saying "But I'm so used to you skinny! But you were so little!" gee, that's helpful.
The infamous 'they' don't know where MS comes from... One theory is it's from the radon that's emitted from the mountains. Colorado has an incredibly high rate of persons that develop MS. It's in our yard, our trees, our basements, and even in the grass. So that's why it's important for the doctors to know where I grew up. Stupid mountains.
Remember I said I have a thyroid nodule like an hour ago? Well, it's still there. My reaction to steroids is weird. Apparently it makes my body think it's going into famine. So it literally puts everything I eat into storage. Or so one theory goes. I'm seeing an endocrinologist to try and figure that all out. I'm a hot mess these days, and a doctors worst nightmare. I have so much going on...
That brings us to about now. The last 6 months have been a steady decline down symptom lane. My brain is in a constant fog. You'll be thankful you aren't listening to me talk this out... That would take FOREVER the way I search for words and try and think of what comes next. My legs are numb, my head feels like someone turned up the thermostat and the pressure, my neck is constantly in pain, and I cannot stay awake to save my life. I'm taking Adderall. Adderall is a highly addictive upper. A stimulant. It makes people bounce off the walls. Me? I can sleep all day on it. It has no effect on me.
Coffee makes me swell up. My fingers are compromised right now anyway, so no thank you. Soda makes me swell up and gives me massive night sweats. Ummmm... that's attractive. Tea makes me swell up. So I'm screwed so far. Still working on that. I haven't noticed many foods that mess me up. Too much sugar = no good, but that's anyone.
So here's a list of all the crap that is happening today:
cognitive fog
mental declination
severe fatigue
numbness in my legs, torso and face
stiff joints, primarily hands
severe fatigue
extreme night sweats (I wake up in a swimming pool)
severe fatigue
cognitive fog
slower mobility
cognitive fog
severe fatigue
Guess which ones bother me the most? I have since left working in schools. I can no longer handle the stress of the job. It has proven too much for me to handle. I do not bow out easily, so it was a huge ego blow. I have a highly specialized degree that it's hard to find work. I'm either over qualified, or not qualified in the right areas. Dan and I have made it work to have me stay at home. I'm trying to work from home and bring in some desperately needed bacon to the table. With my fuzzy, sleepy brain, the last thing I can do is market myself. So that causes stress, which causes flare ups, which makes the symptoms worsen, which causes more stress, which makes things worse... I could do this forever. I have had enough. I want my life back. I want to be a productive individual that contributes to my family and the community. I feel like a waste of space, a useless human being because I can't do anything. I'm done. That's not me! Anyone who has ever met me would know that's not me. So this pity party ended. I signed up for this surgery. I need to raise money because I certainly don't have it. My credit is in the toilet due to all the medical bills I have so I can't take out a loan. But what I do have is faith in my friends, family, and community. I have always believed that people are good. They will rally together and help out those in need. We give our money to kids in Africa for crying out loud, so I must be worthy too. I am handing my well-being over to others. I did the most difficult thing and asked for help. Now I have to let go and hope that it happens. If it does then I can have my life back. If not then I will go deeper into the rabbit hole and get a chair for my pity party table. If only life were that black and white....
Click here to donate to Sonja's surgery fees
