OUR
STORIES
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.
(Webmasters note:
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.)
Angie:
Relapsing
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
heart failure.
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.
(Editor's Note:
We lost Angie in September 2002)
Pam:
Pam
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
device.
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.
Jeannette:
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.
At that time for over 2 months until I started visiting a
world renown Chinese Master Herbalist, I suffered many of the symptoms including
the debilitating fatigue of CFS. The treatments I received from this herbalist
almost immediately started to reverse these symptoms. However, I now believe I
did not go to this herbalist for quite long enough due to the fact that I was
again working full time and found the daily visits exhausting. My day at the
time included working 8 1/2 hours, driving 45 minutes in rush hour to the
herbalist, having 1-1 1/2 hours combined of exercises, massage and herbal wraps
then driving home which took an hour. I did this 5 days a week and visited on my
days off too! for over 5 months. Fortunately I was able to get my car insurance
to pay for all the treatments as part of my settlement! I wish now that I had
persevered with the visits a little longer and I would probably not have this
CFS now. This recovery with the treatments I received convinced me that CFS can
be beaten as well as meeting several others that have completely recovered or
become asymptomatic with good nutritional supplementation.
I developed the CFS after being exposed to paint fumes,
wallboard dust, etc. from renovating a store just over 2 years after the car
accident.
After 2 years of small improvements by eating organic foods,
juicing and taking a superfood green drink, I was introduced to a special line
of supplements which have made a huge improvement to my health. Within 3 days of
using 2 products I was sleeping much better and within 4 months I lost my deep
feeling of exhaustion as I was now getting the restorative sleep needed for
healing. I have progressed slowly in improving my health with improvement of
short term memory, able to handle stressful situations better and I have not
have had one relapsed since I started these supplements almost 4 years today
since I started using them. Until then I suffered a relapsed 2-3 times per year
the 2 previous years.
I seem to have hit a plateau in the last year which I believe is due to having
many heavy metals in my tissues caused in part by some old mercury amalgams. One
test I had indicated heavy metals in my tissues. My current dilemma is that my
medical coverage will not cover tests for identifying what heavy metals I carry
and the removal of my remaining amalgams and I do
not have the funds to do so at this time.
I truly believe my body can heal itself if it is given all
the nutrients it needs. Due to exposure to all the modern day toxins and
stresses of today's lifestyles, we need even better nutrition. Research in
recent years has shown that most modern foods lack many protective
phytochemicals and nutrients due to the fact that fruits and vegetables are
picked green to be shipped to market, they are grown in depleted soils and they
are processed in such ways that many phytochemicals and nutrients are removed to
improve shelf life to our nutritional detriment.
In particular, we must replace nutrients that recent research
as shown is vital to proper cellular function. I believe that the special
supplements I use do supply me with many of the nutrients and phytochemicals
missing from the normal modern diet, which is why my health has improved.
I choose to not use drugs except for short term use for
crisis conditions as I truly believe they are only as stopgap solution.
No illness or disease is a deficiency of any drug. I believe the only way for me
to get well is by researching what I am lacking in my diet or what toxins I
carry and need to eliminate so that my cells can function properly and my body
return to homeostasis.
Since I became ill and unable to work, I have expanded my
life long interest in natural healing and nutrition. I use the computer to do
much of my research as well as attend lectures locally when possible and read
informative books.
I am able to maintain a garden at a friend's which I find
relaxing and it gives me gentle exercise as I work at my own pace which
admittedly is much slowly than before I got this DD! I used to collect various
collectors plates, and other collectibles, etc but I loss my enthusiasm for
collecting as well as the financial means to do so with this illness.
I am single, never married and turned 50 in January and still
have a lot of living to do and places to go! I know I will continue to improve
healthwise and be able to do many of the things I have always planned to do
including traveling to Europe and Asia. I have seen others with autoimmune
conditions improve with better nutritional supplementation and consider that
there is still hope of improvement while there is life and and a positive and
open attitude. Therefore, I urge everyone to continue to research how to get
well and supply your doctors with the newest information available that they do
not have the time to keep up with.
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Wendy:
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
bathroom.
I keep having Colonoscopies done, now they are 5 years apart. I still am careful
what I eat and cannot tolerate any dairy. I love cereal but cannot eat it as I
get the gas pains the awful cramping in my tummy.( Feels like a rat trying to
knaw its way out.) I can take a little non fat milk in my tea or coffee without
that hurting me.
I do eat mostly what I want now but am careful of the dairy and any foods which
may cause gas and tummy aches. My weight went back up and now I am a size 14, I
was in a 12 last June but the medication for the Peripheral
Neuropathy causes weight gain and I now have gained 15 pounds since June.
Michelle:
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!
Well.... it has now been a year and
I feel that I am in worse shape than when I started. Of course I was started on
the long road of steroids and anti-inflammatories. At which point, I have now
gone from 124 lbs to 175 lbs. Where the majority of the weight has accumulated
in the last 4 months.
I am not sure of what all the test
results mean and I have copies of some of them so hopefully I can do some
research to find out what these tests are and what they mean, but I do know that
when we started my sed rate was 97. We now have it in the 50 range but I am in
more pain, in more places now, than when we started. It is so bad that my Dr has
taken me either out of work or 3 hours daily since October. Then on January 28th
he said 3-6 months off work! I now take apx.8-9 drugs daily with Methotrexate
injections weekly and steroid injections as Dr seems necessary. In my opinion, I
am not responding well at all to this treatment.
If there is anyone out there that can help me understand
more I would truly be eternally grateful. Is there anyone who has experienced
the same thing? Am I going nuts? Is it possible there is really that much pain?
(sometimes I think Dr does not fully understand) I feel that I can not fight
this anymore by myself without understanding more about the condition and what
lies ahead of me. I am more scared now than I was when I was diagnosed! I mean,
at first there was hope. Now I feel that the Dr is just as confused and is just
grasping at straws and using me as the guenea pig. I am tired of living like
this and having questions that may never be able to be answered. But if I could
at least be pain free and deal with the disease than I will gladly accept that.
But I truely believe now that pain can make an otherwise "sane person"
go crazy, literally!
Well I should close for now because now I have managed to
make myself a crying, blubbering, emotional idiot! You know, those little
"Pity Parties" that we have all by ourselves!!??!!
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
Susan:
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!!
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