LUPUS

My Story

    Lupus is Latin for Wolf. I never realized just how appropriate that was, until 3-4 years ago. Initially, I was told it had gotten its name due to the characteristic rash that many Lupus sufferers have, sometimes called a butterfly rash, but also reminiscent of the markings of a wolf.
A very close friend of mine pointed out just how appropriate the term Lupus was " because it attacks without thought and when it attacks it is hard to stop ". And that's the truth. Lupus is an auto-immune disorder, which means your immune system is confused, it can't tell the difference between good things and bad things.

People with minor Lupus problems will complain of arthritis, this used to be my chief complaint. It attacks your joints, causes inflammation and can make you miserable.

I found this out when I was 15.

   As a child I was always sick or had one problem or another. It ranged from chronic breathing problems, to vision problems, severe headaches, sensitivity to certain illnesses including pneumonia, flu, and sinus problems.

But when I'd get sick or be dealing with one thing or another it was always spread out, and happened at different times, no one had a clue about the underlying cause. I always had the characteristic rash... looking back on pictures you can see it, I would spend ten minutes out in the sun and my face would be redder than red in the characteristic pattern.

Lupus suffers have an increased sensitivity to the sun. Even today at 23 I have to wear super strong sun block, usually the high numbered kind for babies on my face. I wear sunglasses anytime I'm outside because the light is usually too much.

   When I turned 15 , I got very sick, I had been spending increased amounts of time outside in the sun during the summer for marching band, and slowly but surely things started going bad. The arthritis became unbearable, I had trouble even getting out of bed without assistance, the rash on my face was horrible, I had trouble breathing, my hands were swollen, and I had no energy. But I was bound and determined I didn't want to quit.

One day my music teacher took me aside and told me I needed to stop and think about what I was doing to myself. THAT really sucked for me. Shortly thereafter , my mom had me in for numerous blood tests and other tests and tests tests tests...and the result. " Well you have something called Lupus " What was this ? I had no clue.

I really didn't get a clue until recently. I had been set up to see a rhuematologist, he put me on this and that and it helped with the arthritis then I more or less got to feeling better. He always told me " You are very lucky, some people have serious complications from the Lupus, problems with kidneys, or liver, but you're lucky " And that's how I lived.

I lived like a lucky person. And I didn't give it much thought. I had a couple bad times where I had pleurisy, where the lining of your lungs get inflamed and it presses against your rib cage...painful. THAT was my first experience with Prednisone. Nasty, but helpful stuff. The list of side effects is about a mile long. But I'll get into that later.

    So years went by, relatively healthy with only minor hiccups here and there. One time I was hospitalized for 10 days in Primary Children's Medical Center... I had gotten Mono, and my Lupus went haywire... it destroyed my muscles and my Kidneys were working so hard that I was perpetually dehydrated. I was very, very sick.

I don't remember a lot about that hospital stay except the nurses telling me I couldn't go home until I was able to drink 2 liters of water a day. And when you're laying in bed not moving its very hard to work up a thirst. So that was when I was 17. Now were gonna fast forward to 19-20.

   I had been having some severe problems, I'd been in the hospital a few times and no one really knew what was going on. At one point in time my face was all swelled up so bad I could barely see out of my eyes and man I felt like crap. My normal doc at that time was out of town and my family and I were in the process of moving.

So I ended up seeing the doc filling in for my doc. He did blood tests and a UA, and gave me some steroid cream for my face ( which helped, deflated it like a balloon ) and then this prick says to me " I'm pretty sure you have something serious going on form these blood tests, but I don't want to diagnose it, so you'll probably need to see a rhuematologist " and that was it.

Now this is partly my fault, but at the same time , what kind of doctor sees a serious problem and just sends someone , a young someone, away like that? Well , what happened was the meds he put me on ( again prednisone ) and the cream made me feel a whole lot better. So naturally I forgot about it. I was feeling ok, no worries, moving to a new place all's well, right? WRONG.

   I turned 20 on March 27, 2000. My life would never be the same. I was already getting sick at that time, didn't know why, didn't know what. I had a vague feeling of fear, but nothing to associate it with. Then things started rolling downhill, and fast.

It started with my feet swelling. Odd. Well I had just started a new job, a type of work I was unaccustomed to, I had spent years as a CNA, that's physical on your feet stuff, but now I was working at a bank, sitting. So I thought ,well maybe its the chair, maybe its the shoes, hell maybe its my panty hose!

We changed everything, nothing helped. The swelling continued to work its way up my legs. My mom was freaking out. I thought there had to be a simple explanation. I began freaking out as I noticed I started feeling worse, and weaker, and I felt like I could never get enough to drink. I wasn't able to eat anything, I would try yogurt and one spoonful would make me nauseous. But I was drinking and drinking and drinking.

    But I wasn't peeing very much. I guess looking back on it that should've told me something. But I was still denying something was seriously wrong. I met my doctor shortly thereafter. I had gone to the emergency room cuz I had this huge thing on my leg that looked suspiciously like a spider bite.

I have a very serious allergy to spiders and bees and anything that bites  (besides people : ) and so I went in to have it checked, my mom ( man was I pissed off at her ) told the E.R doc about how I'd been feeling and the swelling in my legs ( which had now been noticeable clear up to my thighs and when you pressed on my ankle or lower leg your finger print would stay...very gross ) so the doc ordered a U.A and some blood work. He came back after the tests had been done... I don't remember much of this cuz I didn't want to hear it but he said kidneys were in bad shape, he said I had liver problems, and I want you to meet Dr. Harrison.

From the on Dr. H became my doctor and not a moment too soon. Things went rapidly downhill from there. It turns out I was suffering from Lupus Nephritis. Translated into English means "  kidney disease caused by Lupus " or more accurately in my case kidney failure. The swelling was actually fluid, that had not been filtered out of my body by my failing kidneys. Instead of peeing it out,  it was accumulating in my tissues. I had so much fluid in my legs I could not walk... I couldn't bend my knees, it had continued accumulating all the way up to my shoulders.

I couldn't lie down flat because the pressure from the fluid crushed my lungs and I couldn't breathe. I was sick, and I was scared. Doc had me on high doses of prednisone which is an adreno cortico steroid. ANd helps with all kinds of problems. Hugh doses of that, blood pressure meds, my blood pressure was so high its a wonder my head didn't explode. I remember lying in bed in ICU one night and they had an automatic blood pressure cuff on my arm it inflated every five minutes.

    My pops was asleep in the room with me, my mom couldn't stand to see me like that so she wouldn't come see me. I had a near death experience that night, I'm not going to write it down here , but maybe somewhere else someday.

Any ways it tuned out that I knew I'd make it, but I was in for a rough ride before that. My doc was sending me to the U of U to have a kidney biopsy. They needed to tell exactly what stage the disease was at to know which course of medicine to follow and how strong etc. Of course I had no clue what this meant.

My doc was insisting that I be flown down to SLC, I refused multiple times because I didn't think I was that sick. Silly? well... well the last time I'd had kidney problems ( in Primary Children's ) I was in a LOT of pain. This time there was no pain... so I thought I wasn't that sick. In fact I couldn't understand why everyone was making such a big fuss. I was part delirious, but I didn't know that either. And the high levels of prednisone were affecting my thinking, which I didn't know either. But in the end I won somehow, I think because they didn't want me to waste my energy arguing anymore.

And my pops and my boyfriend at the time and me all went. I don't remember much of the ride there, I remember getting into the truck though its a big truck and my ex and pops had to carry me because Id lost all ability to walk at that point. Any ways at the U of U they did the biopsy .which was horrid, they stick this huge needle in through your back into your kidneys and it was only supposed to take 30 mins but it ended up taking almost 2 hours...can you guess how many times they can stick a needle in through your back in two hours? Yuck.

Then I ended up having to stay that night. As a matter of fact , the docs there decided that to wait to give me my first dose of medicine when I got home would be too late. So that night, August of 2000,  I received my first ever chemotherapy treatment. I had no idea that this was the start of a long road and a period in my life that I wonder sometimes how I survived. I didn't know then , what chemo meant to me, naive as I was , I thought well it'll be like taking the prednisone, I'll do it for a few weeks then it'll be done. WRONG. It's been over 3 years and I'm still doing it.

    Any ways I went home and was very ill from the chemo, the idiots at the U of U didn't tell me what to expect or give me anything or send me home with anything. So I got home and proceeded to begin throwing up and throwing u and throwing up until it was to the point where I was so dehydrated I was in need of hospitalization. Again.

That is when I met someone who has been an absolute angel for me, R.N Judy Basye. She made chemo not so bad even though it was horrible. She was a bright spot for me, she's never had chemo , but I've never met anyone so compassionate, she gave me hope. And she took care of me and made sure I had everything I needed. I am one of the unlucky individuals that a very very bad reaction to the chemo.

Some people get a little sick, and me I get very sick. I throw up so much its ridiculous, I usually end up having to go back to the hospital for I.V fluids because I'm so dehydrated. After the treatment I usually don't eat or drink anything for up to five days. I try to drink water or gatorade but it usually comes right back up. So I started this chemo and doc told me, well 6 - 8 months. And I figured I could do that, it wasn't a very long time. Granted that was 3 years ago. I had been on blood pressure meds, diuretics, and lots and lots of prednisone and monthly chemo treatments. I hadn't walked in 3 months, and finally I was starting to get better.

I remember the first day I walked after not having walked for so long I had been going to pool therapy like every other day and working hard, I was determined that I wasn't going to spend my life in bed. My doctor had told me realistically that he didn't know what was in store for me, and what my quality of life would be like

    But I wanted my life to be good, damn it I had dreams and hopes and things I wanted to do, and damn it I was gonna do them ! So I worked so hard to walk again, I remember all my physical therapists being amazed by my progress. They couldn't believe it. I could, I knew I could do it. I knew it.

In the meantime I had lost all my hair, man I have a pointy head! Any ways,  the first day I walked, I did it on my own, I was awake early and had my music on and I was flexing my feet and bending my knees. I knew that, this was the day, it took me a half an hour to swing my legs out of the bed and slowly get to my feet. I had my wheelchair in front of me and was using it to steady myself while I walked.

I went out into the living room where my mom was sleeping and I leaned over and tapped her on the forehead. She opened her eyes looked at me briefly, then shook her head "no" and shut her eyes. She didn't believe what she was seeing. Then I tapped her again and her eyes shot up she got up and yelled at me! I couldn't believe it. " What are you doing ? " " Im walking mom ! " " you cant do that!! " " yes I can see!" and from there , it just got better.

My pool physical therapist said she had done all for me she could, I'd gotten to the point where I could stand up on my own, I could walk a short distance on my own, I could finally take myself to the bathroom! My doctor was amazed he told me honestly " I didn't think you'd ever walk again, I didn't think you'd make it this far, its a miracle ".

I almost got tired of hearing it. It wasn't a miracle, it was just drive, and never giving up, and not accepting my circumstances lying down. I was determined that I would walk again,and I did. I believed in myself. At this point in my life I had lost my faith in God, the only thing I believed in was my ability and what I could do. Because I felt like I had been abandoned and everything I did I did on my own, I did without help. Today this is still a struggle for me, belief in a higher power, but that is for a different page.

So I got to walking, my hair started coming back, I was able to pick up my guitar again. Which it had killed me to have to put it down for so long. Music is my life, it was my life.

And I had to give up everything I loved, it was like putting my life on this hold for a while. I got back into living, I went back to work. I went back to work as a CAN because I really wanted to help people,  because I felt like Id been given a second chance and I didn't want to waste it. So I continued working until I started having another problem.

I noticed it very subtly at first, like when Id be climbing stairs. It was kind of a little hitch in my hip. I thought Id maybe pulled a muscle at work or something, it continued to get worse until it was so hard for me to walk... I was practically dragging myself down the hallways at work. So I was getting ready for my chemo treatment and I had seen my doctor several times about the pain in my hips. So 5 days before my 22nd birthday,  I had an MRI done on my hips and 5 days before my birthday and during my chemo treatment my doctor tells me I will have to have both my hips replaced.

Shocked ? Yes. It was like Ok,  another thing to deal with, I don't know if I can handle this. Acute Vascular Necrosis was the prognosis. Which meant that the blood supply to the hip ball had died and as a consequence my hip was caving in on itself. Painful? You better believe it. I was taking so much narcotic painkillers, I was living on them and I hated it.

I was to a point once where I was taking 7 percocets every 2 hours! I was addicted to the pain meds not because I liked it, I hated it. But because the pain was so intense and so constant that I had to keep taking them and I would adjust to them and have to take more.

I had my first series of hip surgeries ( not hip replacements ) but they drilled holes about the size of a sharpie marker into either side of my hip and hollowed it out and filled it with live bone material in hopes that it would cause the blood supply to regrow INSANITY! It didn't work at all and I was flat on my back for months because of it. They switched me to a stronger more addictive pain medication called MS Contin. That sucked, it was time release, 12 hrs, and I felt like I lived in a fog all day and all night. I was sluggish I slept a lot and I had no motivation. I was still in pain too.

Then finally I got the go ahead on the replacement. They did the right leg first. Cuz the left one wasn't as bad. REcovery from it was quick ( mainly because I was sick and tired of being in bed ) I recovered quickly and was back on my feet.

In this time I met a new boyfriend and was finally at a point where I was happy with my life. I got off the pain meds for a while, then the other hip went bad. I can't say I was never depressed, because I was. Not like a down in the dumps horribly blue I hate my life and wanna die depressed, but man I was wondering if bad things were ever gonna stop happening to me. But this time with the second hip replacement I wasn't as bad off.

I had a great boyfriend who was nothing but supportive and my older brother and my parents I had a great support circle. You don't know how important it is for a sick person, a person in pain, or someone whose just plain blue to have a good support circle. I can't thank these people enough for being there for me when I needed them, but I think all of them ( and they know who they are ) know that they played a big part in my recovery.

So then I had my second hip replacement and a totally scary experience in the hospital... I was in an evil room... long story, different page. And I continued to get back to my life. I started to get back to my music, get a good job etc. I'm still doing chemotherapy but I'm nearing the end of it. I've started a great diet/ cleanse program ( see Isagenix ) that's helping me feel really really great! I have great hope for my future, and I'm very positive about things.

I hope to have kids one day, and a family. Lupus has been a learning experience for me, I've learned a lot about myself and my limitations and I've grown into a strong person that I am proud of. I've learned a lot about the people around me, I know a lot about where I stand with people, and I feel like I understand people better. I know now how to love myself and others. Lupus has been a curse and it has been a gift. If you have Lupus I feel for you, but I wont say I feel sorry for you because although you've got tough times ahead of you, you'll come out of it a better stronger person. I believe that, and so can you. Thanks for listening to my story.
 

Here are some links to learn about Lupus:

http://www.lupus.org/

http://content.health.msn.com/condition_center/lupus/default.htm

http://lupus.about.com/cs/lupussle/
 
 

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