Hello, My name is Amber and I am having trouble coping with my lupus. For five years I have suffered from auto immune disorders.
When I first got sick it took 6 months before I got a doctor who didn't dismiss me as a lazy moody teenager. I was 16 when this onset. The doctors told me relax more, excercise, eat healthier, etc generic bs that means they don't know what they are talking about. I finally got a doctor who listened to me as my condition excellerated and had me tested.
She suspected Lupus or rheumotoid arthritis. Perhaps fibromyalgia. She sent me to a rheumotologist who immediately diagnosed me with Mixed Connective Tissue Disease. Later I was diagnosed with fibromyalgia. My specialist who I am incredibly lucky to have is a genius. When I describe a problem he immediately knows whats wrong and how to fix it. Not only that he really cares. He treats me like a human and not an object like those first two male doctors who dismissed me. MCTD is not actually its own disease but a disorder with the symptoms of many other auto-immune diseases including rheumotoid arthritis, lupus, and a few others I can't remember. The medication lowers my production of white blood cells which are overactive and like to attack my organs if left unchecked because they think my organs are foreign invaders. FYI because of this I rarely get normal sickneses.
With medication (prednisone and plaquinil and diclofenac) I was able to control my disease and started to get better. I was down to a weight of 149 the smallest I'd been in years especially considering I'm only 5'2 barely. My life was starting to get back on track. I'd finally learned to cope with my illness and had restored some semblance of order to my life.
A year and a half ago or so I got sick again. My specialist whom I see every three months to moniter my disease saw some irregularities in my blood and kidney function. My protein levels were dangerously low. He suggested I might have to have a renal (kidney) biopsy. He suspected Lupus. I was devastated. But first he sent me to a nephrologist to verify his suspicion. He didn't want to have unwarranted tests if they were unnecessary.
I saw the specialist and she ordered a renal biopsy. It was a terrible experience because my test was delayed and I had to stay overnight in the hospital. A week later the test confirmed what both specialists suspected. I had Lupus Nephritus.
My nephrologist immediately gave me the choice of cellcept or a monthly injection of a mild chemo therapy. I chose the pill because I someday hope to have children. She bumped my prednisone up to 60 from what my rheumotologist had tapered down to five.
Five months later I was in the hospital with pneumonia. My legs had ballooned up recently and I looked as my friends said the michelan man (or state puff marshmellow as me and my boyfriend joked). My doctor said it was normal because protein controls water retention and my kidneys were bleeding protein through my urine. Also the high dose of prednisone didn't help. I gained 60 lbs of water weight in like three weeks. I'd never had much an issue with weight having come to terms with it years before. But 60 lbs is too much for any sane person to bear.
During that hospital stay I was put on water pills which later I was taken off because they were too hard on my kidneys. Luckily the weight gain leveled out the water pill became less necessary. I am now at a steady (hehe fluctauting) weight of 170-190. Usually about 185. I was also on lisonopril (a blood pressure medicine) because it helps retain protein but they also took me off that because I started having dizzy spells because I had low blood pressure to begin with. Oh and I'm taking lipitor because the overactive kidney active makes the liver produce too much cholesterol. At one point I was taking 24 pills a day and for me that was horrible.
I was starting to feel better but when my rheumotologist said my MCTD was under control my lupus would flare up and vice versa.
Four months ago I started to get weird back pain. I've suffered pain for years but like a florist who stops smelling flowers I'd stopped being able to sense pain unless I actively concentrated or if it was intense. It was an excruciating pain in my lowest ribs on each side both bone and muscular. Sometimes the pain would wrap around to the front side of my rib cage. It was a pain so intense I sometimes couldn't breathe. I have asthma too but the inhaler barely put a dent on this. It's hard to describe.
I'd been seeing an osteopath which is a glorified doctorate chiropractor but the pain just seemed to be getting worse.
A month ago my mom who takes care of me (I'm 22 and unable to work, on welfare as I wait for my SSI case to go through court) rushed me to the ER because I couldn't breathe and the pain was agonizing. My breaths were so shallow and taking a deep breath sent a shooting pain through my lungs. I could barely walk 2 steps before I burst into tears. The stuck me twice with morphine and exrayed my chest. I couldn't take a deep breath so it made exraying me difficult. After the exrays they sent me in for a cat scan. They told me my lungs were 50 and 75% collapsed. They sent me home with percocet.
Next week I went to my rheumotologist who ordered another catscan and a bonescan and sent me to a pulmonary (lung) specialist. The results of the bonescan were activity in my neck, jaw and shoulder (the shoulder I forgot to mention had been also experiencing deep aching sharp shooting pain the same as my ribs and lungs). My rheumotologist suspected my lungs had pleurosy (inflamation of the lung lining related to lupus). The lung doctor thought the same until examining me he poked and said I had some condition I forget the name (which means muscle, joint, tendon and bone pain in my rib region). He said he wanted to give me a breath test and a lung biopsy but based upon his examination I may not need it. In two months he will see me again and exray me. Between the ER Catscan and the second catscan my lungs had improved. He didn't want to put me through expensive, painful tests if unnecessary. If I do have pleurosy that means the lupus has moved into my lungs and thats a very bad thing.
However, I saw my nephrologist last week and as far as the lupus is concerned I'm doing phenomenally well. She said if the lupus had moved into my lungs usually it shows in the other lupus affected areas. My kidneys were doing really well. Only issue she had was with my anemia (I'm iron and vitamin b-12 deficient) not improving. I'm on iron pills and been getting b-12 shots for two months.
I have my doubts despite what she assured me.
I've been very lucky to obtain kind caring specialists throughout my illness. I think I'd have never made it through these past nearly 6 years without them and the love of my mom and gramma.
For the last four weeks I've been stuck I think five or six times with needles, been to five specialist appointments.
The pain isn't getting much better. I try to take Ibuprophen instead of the percocet when I can help it but any exertion over twenty feet sends me into a fit of pain and gasping. It hurts so much and I feel so utterly useless.
Last week my rheumotologists nurse called me about the bonescan. It was the pulmonary doctor who had told me the results since my next rheumotology wasn't til next week. The activity in my neck concerned him. Apparently I have some calcification on my thyroid gland. He had me go get yet another blood test and an ultrasound on my neck. I won't know the results until next week.
Hypo-thryroid something or other could account for my lethargy and weight gain.
Yet I wait fretting for the test results. And as I said I'm not feeling better. At the end of the day I feel like sh*t. The muscles in my back agonize and it takes twenty or so minutes for me to relax and settle comfortably Once I sit. For the muscle pain to diminish and the gasping to return to my normal very shallow breathing.
I don't want to die but this pain makes me wish intensely that it would end and the only thought that crosses my mind at those moments is death would be an end. I'm not the least bit suicidal. However, god this hurts so much and I hate it. I'm so depressed and normally a shiny happy chipper person. This isn't me this depressed enraged hopeless person. Rage has been an issue throughout my illness but I'm usually able to control it.
I feel like crying everyday but my lack of breath keeps me from weeping. For some reason the tears won't slip past my eyes. ops: I need to cry.
Now I face what seems like a hopeless future. My friends, boyfriend and family are great and supportive but they cannot overcome the intense pain, loneliness and isolation I feel. The doctors assurances do not comfort me. I feel like I'm dying though my brain says be reasonable you are not. Medication can help. Everyone is trying so hard to make me better.
I've come to the conclusion I will never have children. I don't think with my illnesses I could carry a healthy child to term nor would I want to inflict my children with this horrible condition.
I look at people with babies with a growing resentment. I'm starting to hate my friends for being healthy. I'm crying right now. Two days ago I finally was able to cry. Usually that makes me feel better. Now it just makes me feel hollow. I feel empty and useless and hopeless. I feel like a bag of bricks holding everyone back and dragging them down. They love me and try to reassure me but the feeling remains.
I'm crying and now I can barely breathe and my shoulder is aching and my ribs are starting to hurt. I feel a little better for sharing but I came to this site because my mom told me I should find a support group and there are none in my area. For a long time pride kept me from reaching out for help. I try not to burden anyone so I rarely ask for help. My mom and gramma have fibromyalgia and grams has b-12 deficiency but it's not enough. I need to speak with people who truly understand how I hurt inside.
I've never been a fearful person but now I'm scared all the time. I don't want to die. I don't want to die.
I do believe in God but my faith isn't strong enough to comfort me. I don't blame God but sometimes I find myself asking what I did to deserve this. My mom says I'm a kind gentle person. Everyone says I'm a fun spunky lively kind gentle person. But this kinda feels like punishment. I must have really screwed up in a past life.
Why does it keep getting worse? Why can't I cope? Normally I'm a very accepting person. I often console and comfort and advise my friends because I'm a natural empath and I understand people and their problems. So why can't I do this for myself? Why can't the healer heal her own aching heart? Why can't I use my wisdom and intelligence to quell my fears?
Please someone help me...