Home Community Member Stories Maria

Maria's Story

jkaj@home.com 

Hello Folks,
Here is my story, long and dramatic as it is: When I was sixteen, my beloved father died of pancreatic cancer. This event formed the rest of my life, including (I can see in retrospect) setting off an active case of psoriatic arthritis. This was 1982. I started with pain in my hands, at the time I was the only girl weightlifter in the school, so it put an immediate kibosh on that. There was much speculation, could it be damage from the weightlifting, an injury or perhaps arthritis? Well there was no RA marker in my countless blood tests, so the doc ultimately decided it was a psychosomatic manifestation of grief over my father's death and suggested counseling. I was not the kind of girl who would take such a diagnosis sweetly and it set off a lifetime of internal debates consisting of "there's nothing wrong with me/I'm a wreck" that last until this day. Eventually huge synovial cysts formed on the tops of my hands and my feet/ankles. In college, I had synovectomies on both my wrists and my left ankle. I was supposed to have a synovectomy in my right ankle as well, but simply did not show up for it. That was the type of young woman I was, a med rebel. It's a good thing I didn't have something like diabetes in which case I would probably be dead now. During the rest of high school and college, the arthritis wasn't too debilitating. It hurt but if I drank enough beer, that would go away. I was pretty active. I tried to deny it. Immediately after college I moved to the East Coast where within a month I met my future husband. In 1989 I became pregnant with my first child, my son Remy. I suddenly became covered with psoriasis on both arms and legs, head, etc. I had never even had a spot before, indeed one of my best features had always been my perfect skin. After Remy was born, I developed gallstones, had to have it out (the first fat person to have the new laser surgery by the way, it was videotaped and presented at a seminar and everything) after which I developed shingles and after finally being cured from that discovered I was pregnant again. As soon as my daughter was born (a boy and then a girl right away-now how lucky was that?) the arthritis apparently decided that it would eliminate any doubt I had of its existence. Thank God for my husband, an LPN who did most of the baby care because I was unable to even lift my daughter in and out of the crib. I would try to lie as still as possible so as not to feel any pain, but that wasn't successful either. I went to a rheaumotogist in New Jersey who proclaimed that I would never be in pain again. He tried to give me a cortisone shot smack in the scar tissue of my synovectomy in my wrist which resulted in my entire arm 'blowing up' and even more excrutiating pain. About this time I determined that I needed my mother and moved home to Iowa with my two babies (hubbie joined six months later) I was taking MTX at that time by pill. It made me miserable. I started a new job and the insurance had a preexisting condition clause so I figured that was a good time to go med free. I should have known better, I was 30 by then. I ended up with pleuritis, inflammation of the lining of my lung and found myself barely able to breathe. This finally made me sit up and take notice that yes, I have a life long condition and no, I better not screw around anymore. Well almost. I found a competent rheaumatologist and that made all the difference. I started the MTX injections and THAT made a world of difference. Nauseau and 'chemo hangover' reduced easily by half. It was during this time though that the years of arthritis began to take their toll. Slowly activities have been elimnated from my ability: bike riding, lawn care, basketball, etc etc. I recently (in April) stopped the MTX. I felt that my body needed a break. Or maybe I was thinking I really didn't have arthritis again and it was all in my mind. My rheaumatologist wasn't happy but we agreed that as long as my SED rate remained low I could stay off it. So far so good. I do have a considerable amount of pain still and my rheumy says that this if from preexisting damage. So I guess this is as good as it gets. I still take meds, but not as much, big motrins (we call them that in my house to delineate from the little motrins that the rest of the family takes when needed) Nortriptyline and Vicodin. I guess that's all, not too bad, huh? Maybe I'm not thinking hard enough but the only things I can think of that would be majorlly different if I didn't have arthritis is that my house would be clean (probably wishful thinking) and I would probably have a couple more kids. More than likely I would have a better job, too because my lack of energy really had an effect on my employment. I used to be able to push myself when I was tired, but now when I get tired, my brain goes away. Not conducive to good work. My arthritis does make me different but if I didn't have it, I would be different anyway, so that is really a non issue in my life. I go up and down, too and I happen to be up right now. I find it so helpful that there is a website like this to help on those days when I think I am being crazy again (it's all in your head, it's just a little pain, everyone has pain, you make too big a deal....etc. I really think that and sometimes I go as far as to think my rheaumatologist is just going along and really all these meds are placebos, oh I am crazy this way). I do find that having arthritis does make you a good planner, because I have to plan things around estimated amounts of energy. My kids (who are now almost nine and ten) have grown up with my having this, so to them it is regular life. My son does sometime lament that he wished I didn't have this and went through a period where he wanted to become a researcher to discover a cure. Now he wants to be an engineer. So this is just part of my life, and yeah, lots of other people don't have to deal with it, but lots of other people also don't have the great children I have and my not-exactly-perfect-but-I-love-him-anyway husband and all the other good things I have in my life. Everyone has their struggles and some people's are just more obvious than others. Hope this isn't too long.