Disclaimer: These are not intended to replace medical advice or explanation from your medical doctors. Please consult your physician for information regarding your own care.
These are published these in each person's own words, with only a few spelling
and grammar corrections. These people come from different places in the
world and the use of language differs from region to region. We felt each
one presents their story in the most personal way possible.)
Since the group
started, some of the following people have dropped out and some have new
additions to their stories, and sadly we have lost a few members. Each of
these biographies were written when they joined the ACES community, some have
been updated and some have not.
The management of ACES is in no way responsible for the advice or treatments mentioned. For medical treatment, please consult your physician.)
polychondritis is an autoimmune disease that affects the cartilage in
the body. It hits mostly the ears, nose, eyes, throat and chest, ribs and heart.
My ears will collapse so will the bridge of my nose, and the rings that make up
the trachea. making a tracheotomy a necessity.
I was diagnosed in
1989 after twenty years of no one knowing what was wrong. I have suffered
multiple heart attacks because of it and lost a lot of vision. I am legally
blind from the eye flare ups. I also have Lupus,
Sjogren's Syndrome, fibromyalgia,
Osteoarthritis, and Osteoporosis
caused by the steady use of prednisone.
Recently. it was
discovered I have cardiomyopathy.
One cause is connective tissue disease, like RP. This causes the heart to
enlarge and not pump the blood properly and usually leads to congestive
Autoimmune diseases need more research money committed to finding a cure. or at least a cause. Life is so uncertain when you live with one of these diseases, because treatment is a gamble of what will work versus what may work.
We lost Angie in September 2002)
Lopez....55.....Born July 11, 1943...My husband and I have been married 20
years...Ruben is his name....Between us we have 6 children (adults), 14
grandchildren, 3 great-grandchildren and two more on the way...Ruben is a
machine operator, I am me....I love the computer, as it is my outside world
window...I can go anyplace I want and learn all I can thru this electronic
My disease is Hemochromatosis
which caused serious autoimmune problems and is terminal, but I'm going to fool
all of them...I am currently going thru heart problems and evaluations...Some of
my favorite things are collecting Indian Artifacts, southwestern things, as I
was raised in New Mexico, and computer genealogy...Matter of fact, may be
related to one of the members, who I met thru this group.
I have had Chronic Fatigue
Syndrome ( a.k.a. as CFS/ME/CFIDS) since January 1993, diagnosed in Sept.
1993 though I believe I it was actually started with a car accident in 1990 when
I was rear-ended.
I was diagnosed with Ulcerative
Colitis in 1986. I had surgery to have two Colon Polyps removed they were
benign and I had a large area of inflammation which the lab results indicated
could either be Ulcerative Colitis or Crohns.
The doc started me on Adzuldifine ( sulphur) which I was allergic too ended up
in the ER and taken off it. The doc then put me on Coricosteroid enemas for 18
months! I later heard from two different Gastroenterologists I should not have
been on the Corticosteroid Enemas that long. After the 18 months and a prolapsed
rectum, I was put on Prednisone and was on it for about three months. I hated
the side effects sweating, clammy skin and dizzy feeling and just feeling yukky.
I lost a lot of weight and went from a size 12 down to a size 6/8 I am 5ft
6inches tall but afraid to eat anything. I spent two years most of it in the
My name is Michelle, I am 36 yrs old, divorced with two kids. One daughter, 14
1/2 and one son ,12. Last year I was diagonosed with RA by my primary doc then
sent to a Rheumatologist. He says that there is no way I have Rheumatoid
Arthritis. And diagnosed me with MCTD/UCTD. (mixed connective tissue
disease/undifferienated connective tissue disease). He told me then that in a
month I would be feeling terrific!
Christy:My name is Christy, I'm married, have 2 daughters ages 15 and 12, and I live in Georgia. I was diagnosed with Spinal Osteoarthritis in 1996 by an old country doctor who patted me on the head, gave me some pain pills and told me to come back when those weren't strong enough anymore. I then went to an Orthopedic Surgeon who said it couldn't be OA because I was too young. His diagnosis was a herniated disc. After $4000.00 worth of scans and x rays, he sheepishly told me that I had Spinal OA and he sent me to a pain management clinic. I began receiving weekly depo-medrol injections but when I confronted the doctor after shot #4 and told him I was not feeling any relief, I was told that he was the doctor, I was the patient and I just needed to lie down and get ready for my next injection. Nope. That was the last he saw of me!
From there I went to numerous GPs and finally was referred to a rheumatologist. I thought this was the solution. I would finally get help. By this point, I was having numbness in my left leg and trouble walking, couldn't stand for any length of time, couldn't sit in one position, and my neck and shoulders were in constant pain. I had also begun to experience swelling in my knees, hands and wrists. This rheumatologist did more x-rays and a bone density test, agreed that I had OA and said I needed to learn to live with it. He said he had OA in his knee but he didn't let it stop him. He gave me a prescription for Prozac, which is probably why I didn't kill him, and told me he was hesitant to prescribe pain pills because they were very addictive. At no point did he do any blood work or bone scans.
After finding Angie and Judi and the autoimmune list, I started to research things on my own. I found another RD who is very aggressive in his treatments, had gallons of bloodwork done and have a (final?) diagnosis of multiple autoimmune diseases. A bone scan revealed swelling in every joint in my body, blood tests and x-rays revealed the presence of Osteoarthritis, Rheumatoid Arthritis, Ankylosing Spondylitis, fibromyalgia, chronic fatigue syndrome, and a colonoscopy confirmed Inflammatory Bowel Disease, Crohns Disease. We are treating things very aggressively, finally, and I currently take Sulfasalazine,Prozac, Prednisone, Folic Acid, Calcitrate D, a Multivitamin, Iron Pills, Propacet and Trazadone. I wear splints on my wrists due to the development of Bouchard's Nodules and weakening ligaments and I wear a soft cervical collar on my neck also due to loose ligaments and swelling.
I have had doctors tell me that I would only walk for 6 months (this was in 1996) and I needed to shop for a wheelchair. I have an electric wheelchair that I use on limited occasions but I have managed to remain walking with crutches and with medical advancements and God willing, I will continue walking for years to come!
UPDATED: November 2002
After running the gamut of medications intended to prolong the use of my joints and major organs, I had settled on Enbrel. It was the Miracle Cure. I felt fabulous. I had more mobility, less swelling and stiffness, and wasn't "loopy" as I was on other medications. My SED rate, my doctor's favorite measure of my wellness, was to an all-time low of 27 (still not "normal" but fabulous for me!) and I was happy. This lasted for an incredible 8 months!! Then the trouble started: adverse liver enzyme reactions, low white count, high red count, and the ever-watched SED rate rose to the 70's. Time to move on. The next "Miracle Drug" was Remicade. Oh how I hated the IV infusions but the feeling of warmth in my joints began while I was lying on the table during treatment and the ease of movement continued until my next treatment. It was wonderful. One day I woke up with a slight sore throat. Knowing what to do, I immediately stopped my medications, this was a weekend, and I contected my rheumatologist first thing Monday morning. As I thought, he said "Stop your medications until you feel better. If it gets worse, I'll call in an antibiotic for you. Rest." It was the end of December and everything was closing for the holidays and most doctors were leaving town. Including my rheumatologist and my family doctor. I went to the ER with a fever and tried to explain what was wrong with me. I was sent home with a round of cephalexin antibiotics. Four days later, I went again to the ER. I spent the holidays in the hospital with massive IV antibiotics trying to save my life. The "slight sore throat" had ravaged my body and I wasn't able to fight it. Within 4 days it was full blown pneumonia. A side effect of the Remicade. Heartbroken that I couldn't continue the remicade, my current course of action is the new acclaimed Kineret. One shot daily, a very painful burning injection done sub-q, and so far I seem to be doing well. I haven't had the overwhelming success I had with Enbrel and Remicade as far as immediate relief and easing of pain and swelling but my SED rate and other labs are agreeable and I seem to be doing well. Another side effect of the remicade, unknown while I was on it, is tumors. I currently have them on my kidney, liver and lung and we repeat MRIs every 6 months to watch them and monitor any changes but I've had no new growths or adverse changes so far on the Kineret. Other current meds are: Celebrex, Prozac, Neurontin, Methadone, Prednisone, Allegra, and Prilosec. I was taking Methotrexate injections weekly until last week when we stopped to monitor some changes in my liver. Once we see how my body responds, we will most likely return to the injections as a major part of my basic care. That is too important to leave off.
I hope these stories and updates can help others who are just beginning on their medical journeys or those who are well into their treatments to know what the options are and how to face the next day. I'm not super-woman. I've never considered myself and exceptionally strong woman yet I can get through each day of this "adventure" with the eagerness of one who knows a cure is just around the corner. I am now using a wheelchair full time and many of my medications impair my judgement to the point that I no longer am able to drive or handle my finances but I still exist. I'm still a wife and a mother and I take an active part in the lives of my husband and children even on the days I have to stay in bed until they come home in the evenings. But I'm here and I plan to do my best to stay here. I will see a cure in my lifetime. I'm sure of it. And I want to make sure I'm here to see it!
My SSDI was approved in October 2000 and was back dated to October 1998. Finally.
My name is Susan Woods, I'm 44 years old and live in Roanoke Virginia. I'm married and have 2 beautiful daughters, ages 24 and 19. I was diagnosed with Relapsing Polychondritis about 4 years ago and had it 2 years before the DX. I have a mild form of RP so far, just in my ears, though it has spread to my eyes now, but no damage yet. I have osteoarthritis in my left knee, I don't really know if it's a result of my disease or from the Prednisone that I take to help the RP. I have had high blood pressure since the age of 24 and am also on meds for that. I am still able to work and live a mostly normal life, though it seems to get harder by the week. I try and really look at the world now too, the sunrise and sunsets, flowers in bloom, birds at my feeders. Life is beautiful, you just got to know where to look!!
This page was last updated on 04/23/2005