The Beginning

Okay, now that the pleasantries are out of the way, let's get down to business. Just what am I talking about when I say I have Psoriatic Arthritis. Well, let's get the technical description first. According to WebMD.com, Psoriatic Arthritis (or PA as it is commonly called) is just like other types of arthritis is that it has many of the symptoms such as the pain and swelling mainly caused by and overactive immune system which enflames the tissues around the joint. Plus you get the added joy of trying to deal with the embarrassment of psorasis. The disease itself and be crippling depending on where the disease strikes and how badly the joints become enflamed. I myself have had to endure flares (times when the inflammation is most active) that have kept me bedridden because the joints affected are in my hands, feet and lower back. So, even though I am 28 years old, I can not do as many of the things I'd love to due to the arthritis and how it's taken over my life. I also have psorasis on my elbows, knees, and my entire scalp that makes it difficult for me to go out in public without feeling some sort of embarrassment. I still go out but it takes a lot of preparation and then I constantly feel as though people are wondering what's wrong with me. The only thing that really bothers me is the fact that my scalp is so flaky and other people judge so much before knowing what's going on in another person's life.

Since I've started mentioning my life and past with not only PA but the family's illnesses as well, I think I ought to clue you into what has been my life for the past ten years and counting. During my senior year of high school (1994 - 1995), my brothers and I were excited during the Christmas holiday break in December of 1994. I was busy working on school applications for colleges as well as working at the local movie theatre, which I love and still hold as my favorite job of all time. My brothers were ordinary brothers, annoying and always pestering to get attention. Billy was the oldest of the two, born in 1980. Andy came along in 1981. We were the all American family with the 2.1 kids. Andy, of course, was the .1 kid due to the fact my mother and father were not planning on his conception. Even so, we all got along as brothers and sisters do. The second week of our Christmas break started out with Billy sick with what we thought was the flu at the time. I had recently recovered from it and Andy seemed immune to it. Billy had been sleeping off and on for about two days, always crying out every so often for my mother. On the third day, Billy was crying out more and more often, wanting Mom to come and help him because he hurt and couldn't breathe. He said his side was hurting, like someone was sticking a knife in him. Because Andy and I were thinking he had the flu, we did tell him to knock off his yelling and crying, that there was nothing to be done until Mom came home. But it got worse. His cries grew loud enough to wake my father, who worked nights at the time and was alseep in his room on the second story of our townhouse apartment. My father went to the pharmacy to get some cold remedy products, but none of them would help Billy or ease his pain. My mother decided to come home early from her shift at work, saw that Billy's lips were tinged blue and convinced Dad to either call 911 or take my brother to the hospital. Off they went to the hospital, leaving Andy and myself at the apartment. Seven long hours later, my mother returns home to tell us that Billy is in the Intensive Care Unit and that his lungs were filled with blood. We weren't allowed to stay out at the hospital that night because the waiting room for ICU was full. So we stayed at the apartment waiting to find out what was wrong with Billy. He was getting ready to turn 15 in January of 1995 when he was diagnosed with Systemic Lupus, a disease that affects women more than men and usually during child bearing years. After we learned what he had, the entire family was tested for the same thing. My test was the only one to come back inconclusive, as I mentioned before and set me off on my own journey along a path of dealing with a long-term disease. My brother did recover from that episode and has experienced several more over the years. I'm very happy to say that he's doing very well at this moment in time and living as best a life as he is able to do so.

I moved out of my mother's apartment into one of my own in August of 1996. Chris moved in with me about three months later. I've known him most of my life, starting with our meeting when I was 12 years old. We had attempted a relationship several times when I was going through high school, but we each had our own things to work on. This time we stuck it out and eventually married in May of 2000. He knew and was by my side during my decline in health that seemed to start in 1999. Even though I had some joints that were inflammed, I really didn't think anything of it and kept living as though I was perfectly fine until one more when I couldn't get out of bed and step onto the floor without yelping in pain. Making it to the bathroom was almost like walking upon a path of cut glass. I was able to get into a rheumatologist that didn't really care about my questions and just said, "You have PA. We're giving you this. Take it." Soon after that, I lost my insurance and couldn't stand on my feet long enough to hold a job any longer. Chris finally was able to get a job but we still couldn't afford insurance. I had to go to a free clinic that enabled me to see a doctor every three months or so for about ten minutes. After a year and a half of going there, Chris was hired at a factory that provided very good insurance and I went back to my family doctor. It was shortly after that my family doctor admitted he was out of his league when dealing with my care and referred me to a very good rheumatologist. I have been blessed by the rheumatologist in many ways because he takes the time to listen to me and explains things instead of just shoving me out the door. That's pretty much my journey so far when it comes to the first finding I had something wrong to where I am today. The one constant has been Chris beside every step of the way and not caring how bad my mood swings have been or the fact we were barely making it as I was waiting on approval for Disability since I can no longer stand on my feet for long.

He and I just went through a period of uncertainty with his health a few months ago. He was diagnosed with Non-Hodgkins Lymphoma stage IV in January of this year (2005). The great thing is that we were able to catch the cancer and tests revealed that it was the slow growing type. Therefore the medication and chemotherapy were enough to put him into a cancer-free status. He will have to have CT scans and bloodwork done every three or four months for the next couple of years to make sure he's still cancer free. We've basically been given a second chance for which I'm completely grateful. So, now we take it day by day. Hope I didn't bore you for too long. Thanks for reading.

Until next time,
Kim