1. Woke up one day with hands and feet swollen to the point where I could barely walk. Excruciating pain, to the point of crying when I had to stand.
2. Visited some GPs, and requested a battery of tests, including Lymes. Lymes was negative.
3. Diagnosed with RA, and put on a high regimen of steroids as it was the only thing capable of relieving the swelling and making me able to walk again. I was unable to run, ride my horse, or think. I had the summer to go before medical school started.
4. Referred to a rheumatologist. He ran me for everything under the sun. At one point I recall giving up 14 tubes of blood for tests. He considered lupus, but decided on RA, despite no family history, no previous occurence, etc.
5. Given sulfasalazine and steroids. Sulfasalazine made my hair fall out. Steroids made my face swell until I did not recognize the face in the mirror.
6. School was torture. I still couldn't walk without pain, and crossing two parking lots to my seat in the back of the class was a twice daily torture I dreaded. I was often a few minutes late for class, because it often took me twice as long to walk to my seat from my car.
*Note: I somehow finished the capstone paper for my second bacclaureate degree during the summer. I have no recollection of it, other than a bunch of documents on my old laptop and some vague ideas of going to the library and some embarrassment that I was always not on top of stuff.*
7. I couldn't think, or sleep, or study. Words did not make sense. I could read a lecture, and then the next day it was as if I had never seen the material before. It was frightening, but I shoved the thoughts under the mattress and kept doggedly going to class.
8. My husband left, my bank account was drained, and I physically could not endure any more. I began to fast, as the lightheadedness afforded me some respite from pain and I could not afford to buy food.
9. The day after Thanksgiving, my super hero mother swept in and took charge. She is a lioness of a woman: here was her star of a daughter, reduced to a skeleton, not eating, somehow managing to drag herself out to feed the animals and go to class. I remember that she said when she came, I just slept. And slept. And slept. I don't remember.
10. Somehow my Lion of a Mother managed to pay the bills, improve my health, and keep herself going. I still don't know how she did it, and am (and will always be) impressed and grateful.
11. M. came into the picture, and encouraged me every day to get better. He took over the huge task of managing my every day improvement through daily sleeps, paresthesias, doctor appointments, medication-induced illness, etc. He is the man.
12. Today, I currently have a B in histology and a very good C in biochemistry. I failed anatomy with flying colors, which I attribute to being on Biaxin/Planaquil and not having testing accomodations. The results of that class pushed me to be brave enough to go on Bicillin LA IM, which at 1.2 million units a shot 3x a week is like using a machine gun instead of nerf balls to kill the lyme bugs. (That beast hits the blood brain barrier, which is where a major load of my bugs were as I had neuro symptoms.)
A former English and science double major in college, I now have the writing skills of a fifth grader. My tenses and word choices are often skewed, and I have to use spell check all. the. time. Keep in mind, I was a person that could sit down and produce a very good 10 page paper in a few hours, which was often gramatically perfect and needed only a revision or two in terms of translation from science terms into more accessible verbiage.
My ability to learn has completely changed. While previously I was a very visual learner, getting most of my material from reading, now I have to rely on my kinesthetic skills a LOT. I have to go through the material and break it down into tiny pieces. I transform the tiny pieces into questions in a table. I have to change the format of the table to alternating color bars as I have trouble reading long blocks of sentences and certain types of fonts. Then by the time I have painstakingly gone through each lecture and created 10 pages of questions I can go back and carefully read and re-read, developing associations for each concept.
I look at my classmates and wonder what it would be like to be able to think again, to have real confidence in knowing what you know. I lost that through this disease, and fear having to press for testing accomodations for years to compensate for my slower thought processing and thinking.
The bottom line:
- Recovery is possible.
- I like my life now much better than before--I am not the servant of someone else, and I have a much better and stronger relationship with my family and my new boyfriend than before.
- I really appreciate being able to do a few things, and having days without pain.
- I dream of riding my horses at the level I did before, and am slowly closing in the care gaps that were created by my illness (for example, their feet were trimmed erratically during last year and need consistent touch ups to improve). I did a little bit of riding this last summer, which was disappointing due to my physical weakness and inability to really do anything (for instance, I almost fainted while cantering my schoolmaster in a w/t/c class!!!). Getting on a horse now I'm still not as strong as I was before, but can think of actually riding a bit instead of falling off due to pain or lightheadedness.
- I have a lot of confidence in my physical ability to overcome adversity. Events that would have rattled me to the core before my illness now just make me shrug and move on.
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