Wednesday, May 04, 2005

My arthritis story.

The begining of me as I know me.
First a little background info for any people reading this that don't know me. I'm 25, living in Seattle and working as much as my tired body will let me. I was diagnosed with juvenile rheumatoid arthritis at age 16, but i began feeling pain in my wrists soon after I turned the ripe old age of 15. But you must understand that i'm a very stubborn person when it comes to some things, and for some reason being a self concious teen i didn't feel like i wanted a doctor telling me my body was off somehow. Anyways, I finally decided to get treatment when I was 16 and found out that I didn't like doctors much and thought that i would be just as well off treating myself by sleeping and ignoring the swelling and pain. That worked well for about two years... I would have morning stiffness that i could deal with, yes it was annoying, but not as annoying as that damn doctor telling me what to do! Soon after i turned 18 i came down with some sort of nasty cold or flu that set off my immune system horribly. My mom and I had taken a trip to Arizona to visit family and watch some spring training baseball games. I don't remember if one of my family members had been sick and i got the bug from them or possibly from the stress of traveling and all that airline air! Long story short with this fact, my arthritis took over and I went on to lose over 25 pounds in few months, and could work about 15 hours a week. Which I still don't believe I was able to work at all. I used to have to set an alarm for an hour before i wanted to wake up and take some pain medication, try to not move for that following hour so it could have a chance to work. Then when my alarm would go off for me to wake up for real, I would have to take more pain meds just so i could have the flexibility to drive to work and walk to my desk once I got there. I actually only worked for about 6 months before I thought that I was seriously killing myself by trying. I worked for the Herbfarm in the accounting office from March-September that year. I have memories of me trying to fall asleep and wishing that I wouldn't wake up the next day and have to go through the pain of getting out of bed the next morning. Everything was painful. And yet, get this, I still didn't want the help of doctors. My parents didn't know what to do. I didn't know what to do. I thought there was no hope, for a time I didn't want there to be any hope. I was in the mind frame that I could never have a normal shot at life because i was a mess. I could hardly walk, all I wanted to do was sleep, and I would beg my mom to shoot me so i could have peace. (I can't believe you are still reading this, I'm so depressing, but thanks, it does get better, I promise!)
Needless to say that one day my mom was talking to her sister that lived in Arizona about me and somehow they came upon the idea of me becoming a snowbird. Or maybe it was my mom's idea that she asked Kim about, I don't recall anymore. But anyhoo, the idea was born and I decided that sunshine felt just as good as sleeping sometimes, so it was worth a shot. I moved down to Salome into the Betts household in October of 1999. Since Kim and Rick had opened a bakery in Salome a year or so before, in exchange for them letting me stay with them, I would help out at the bakery as much as I felt i could. The dry air felt so good down there!!! Within a few days I was feeling better, homesick, but i could certinley feel my bones drying out. I liked working at the bakery too. I found out that i liked selling donuts and talking with all the fellow snowbirds, finding out where they were from and what the plans for the winter were. It's amazing how small the world is. I would get so excited when someone from Washington State would stop in for coffee or pizza. It blew my mind that so many people in this TINY town knew where I grew up.
So I liked working at the bakery and loved the sunshine. Kim used to compare me to a lizard because i was happiest soaking up the rays of the sun. I couldn't get enough, i was feeling better and taking less pain medication. I was even gaining some weight back, and working at a job that i liked and was good at. Plus, I got to drink coffee and talk baseball with some of the grandpas of the town, I could hold my own in a conversation, actually no, I owned those conversations, I am always right when it comes to baseball! Damn it!
Rick's mother, Morita, would come into the bakery every morning with Zeke and have their morning coffee and donut. Zeke would do the crossword in the Arizona Republic and Morita would gossip with the locals and always ask how I was doing. We were partners in pain as we used to say. It was funny, I could always tell when a rain storm was coming usually a few days before it would rain. I would be slightly tired and a little more achey. I would warn people that the rain was coming. I was the finally a weather girl like I had always dreamed of being, just not in the way I thought... Life has a funny way of working out sometimes. Anyways, Arizona was doing my health well, my spirts were rising again. I would continue to go down to Arizona for the Fall and Winter months (basically the baseball offseason) for 3 years.
In the summer of 2000 Nickki had the idea of buying a house and Debra and I would live all together. But she also sat me down and told me that basically if we were going to go out into the real world that I would have to be able to bring in a steady income. Which means getting help, going back to doctors and getting real treatment for my arthritis. It sounded like a plan that I needed to follow through with. My family was sick of seeing me in pain and withering away. Nickki had finally gotten through to me and I went and saw a specialist. The doctor I went to see was very cool and easy to talk with. The assistant to the doctor was a very cool person as well, a actual person that understood that i was a person and not another file with symtoms to fix. It's a good patient/doctor relationship.
The first thing they decided for my treatment was to try to stop the damage that was happening and eventually try to repair damage that had happened. They started me on 25 mg of prednisone, a anti-inflamitory pain medication, plaquinil, and methotrexate. My only concern with all of these
drugs was with the methotrexate, since it was a drug that is a form of chemotherapy, i couldn't drink alcohol for at least 6 months. I eventually got over that and decided that they knew what they were doing with my situation and I had to start somewhere if i wanted to get back on the road to good health.
When i started taking the prednisone it was so funny, I had so much energy I was talking fast and wanted to do everything under the sun that i hadn't be able to do in a few years. Prednisone is a anti-inflamitory steriod, which did me wonders. I felt like i had been given my life back within a few days on this magical stuff. It was like speed though, i couldn't sleep very well, and just wanted to clean and walk around the neighborhood and be active! When I went back to see Dr G, they began to taper my prednisone because odviously i was on a little bit too much. Life was a little more normal after that. I was still loving having less pain though. The summer of 01 washing cars became something that i loved to do. I would wash my parents cars and mine at least once a week and when gramps came over or Nickki, i would wash theirs too. I was a car washing, prednisone taking little freak! I began gaining my strength and decided that I would spend last Winter down south in Arizona. Going back was good, I worked A LOT down there that year. But I had the energy most of the time. I got to work the night shift with Andy and Rick making the donuts, I became a good donut froster! It was also my responsibility to make the turnovers and danish everynight. I really enjoyed working that shift. Then I would go back to the house and sleep for a while and go back around the lunch time hour and let Kim have a rest at home. I would usually stay though the dinner rush and help close up the bakery and count the till while the rest of the crew would do the cleaning and finish the dishes.
When I got back from AZ that spring Debra and I had been talking about moving to Phoenix and starting a life out in the desert because it was cheaper to get a place and the sunshine was good for my health. But as I was back home with my family and feeling ok, health wise, in Washington I didn't really want to leave my family and friends here. I let Debs down majorly there, because we had made plans. But she was living with my parents and that summer we decided that we would try a few courses at GRCC to extend our minds a little. It was a good thing, brought Debra back into the world of brainiacs, like she belongs. And gave me a sense that i could do something well and learn new things. We took 2 classes that Fall quarter at Green River, a sociology class and a Northwest History class. We both we top students in the classes. Once finals were over I didn't quite know what I wanted to do, but i knew I needed a job. I didn't have enough money to go back to school and I just needed cash flow. It's so funny how things work out sometimes... About 3 days before our last final, I was looking in the classifieds for a job, I wasn't finding much, so i went online to check my e-mail and Carrie had written me asking if I would be interested or have time to do dining room set up for the restaurant. I was interested. My only concern was would I be able to do it physically. So I e-mailed Thomas to find out the specs on what the job involves, since he had been doing it on a fill in basis for quite some time. He said I could handle it, so i set up a try out day with Carrie.
On December 16th, 2001 I had my try out day with Thomas and was a little nervous. But the job sounded like so much fun. I got to basically play house everyday and get paid for it. Setting tables... It sounds so simple, but it is so detail oriented that it's stressful sometimes. I'll have to post a picture of one of the tables all set and in it's glory. It's not hard whatsoever, but again, so many details that make the difference on how the entire dining room is pulled together. Long story short with the job end of things, I enjoyed it and accepted the job they offered. It was a long drive out to the Herbfarm, but at the time I had just been given a Cadillac from my Grandmother who no longer drove and knew I needed a nicer car than the car I was born in (yet another story altogether) Anyways, I had a comfortable ride to get to work and wasn't concerned with the commute. I also could do much of the folding for the restaurant at home and could make my hours fit around the rush hour traffic if I desired to do so. It was exactly what I needed at the time and I'm still working at the same job currently! It was a absolutly wonderful turn in my life to have a full time job that I loved and I could do physically. I also really enjoyed the people I worked with. I was very shy at first, but I eventually came around and opened up a little. The Herbfarm is where I met Jason. I'll have to have a whole new section on just Jason because he's just too good to be just an add on in another story!
Moving on now, and to recap a little... Here I am now in my story at 21 years old, my first full time job and feeling like I just might make it out in this little thing we call life. Thinking of actually moving out of my parents nest and making a life for myself. I was living a halfway normal life and getting stronger every week from my new job (there was a lot of walking to get used to and standing when i was folding) I was actually getting treatment and making headway with the medicines. Life is getting better every single day!
To be honest now, it's taken me way too long to write this over a span of days, and frankly I'm just tired of writing about it :) ... So as of today I'm a ripe old age of 25, the past 17 months have been filled with surgeries (4), physical therapy, many infections (my body doesn't desolve the desolvable stiches and that led to ongoing problems), which was also filled with course after course of antibiotics and those wore me out to no end and made working difficult! But this last surgery (I had my wrist fused in February and the steel rods taken out in April, a month early again because my body was being a bitch and wouldn't just let them be) I think I see light at the end of this one handed tunnel! I'm seeing a infectious disease doctor that has confirmed that I super antibiotic resistant staph. infection which hasn't helped my arthritis and all that jazz. I'm currently on a new antibiotic that I think is working because after less that a week of taking it I have more energy that I have in months. I suppose it could be just a coinsidence (sp?) but I have a good feeling that finally this will work. I'm also looking forward to being able to start taking the Humira again, I can certinly tell when I take that, it gives me good energy and feels like it greases my joints up :)
Thank you for reading my little story, sorry to cut it like I did at the end, but what can I say I got impatient, if you know me at all, you know that it's nothing out of the ordinary.

1 comment:

George Thomas Kysor said...

I linked to your post from my "Sampler" blog.