I have diffuse stage 2 scleroderma. I was diagnosed in 1994, but I am sure I was suffering from some of the symptoms in the early 1980s. I remember going to the doctor several times and telling him that my hands kept swelling, but all to no avail. It was not until December 1993, when my hands were terribly swollen and "on fire" that I managed to get some positive reaction.
Therein followed tests, tests and more tests. Rheumatologist, neurologist, and dermatologist. Finally I was waiting for the psychiatrist! I remember vividly the final visit with my first rheumatologist. He virtually told me to go home and get on with my life! I think the shocked look on my face prompted his suggestion that perhaps I could seek a second opinion if I wanted to! In his defense, I should point out that at this stage my fingers had not started curling.
I grabbed this alternative with both hands and I have been with my terrific "new" rheumatologist for seven and a half years. The first visit with her brought the first mention of the "S" word, and three months further down the track this diagnosis was confirmed. I didn't know whether to break out the tissues or the champagne or both! I was so happy that finally someone had agreed that had something wrong with me, and that it had a name.
She told me not to go reading medical books, but no sooner had these words left her mouth than guess who was at the local library pouring over and photocopying great medical tomes!
So far, I've had 2 GP's, 2 rheumatologists, 4 rheumatology residents, 25 medical students, 5 gastroenterologists, 1 dermatologist, 1 neurologist, 2 physiotherapists, 1 podiatrist, 2 hand therapists, 1 hand surgeon, 4 gynecologists, 1 orthopedic surgeon,1 general surgeon, an occupational therapist and a social worker.
I've also had countless tests: CAT scans, full body and limited bone scans, X-rays, blood and urine tests, ECG's, lung function tests, ultrasounds, a HIDA scan, 3 echocardiograms, a small bowel enema, a lung scan and an MRI. Plus, I had a fibroid adenoma removed from my breast, a hysteroscopy, 2 D&C's, an abdominal Hysterectomy and Oopherectomy, a colonoscopy, several gastroscopies, 5 laser surgeries to the stomach, a Prostacyclin infusion, a blood transfusion, 2 total dose iron infusions, 2 finger surgeries, 2 hydrodilations to the shoulder, many joint aspirations, a laparotomy, drainage of an ovarian cyst twice, six-weekly cortisone injections.
I also have a sizable list of medications. It makes first visits to new doctors and hospital check-ins a nightmare when it comes to recording and remembering my medical history! Besides they never have enough room on the forms. So I have made a list of the essentials on the computer and take copies of it when I go on any of these little sojourns. I also have a copy on hand at home for when emergencies arise; it comes in handy when the paramedics arrive and you are "off the planet" with the painkillers they give you!
Radiographers, pathology nurses, receptionists have all become familiar faces and greet me by name on sight. It's probably helped by the fact that I'm continually contributing (albeit in a roundabout way) to their end of year holiday! Waiting rooms that do not change their posters and magazines are a frustration! Donations of National Geographics are usually well received. They also make great bargaining chips when I find a magazine with an article or recipe I just can't leave without!
My husband is away a great deal with business, but I am always assured of his loving care whether he is at home or thousands of miles away. I have three wonderfully helpful and supportive daughters still at home, plus marvelous parents and in-laws close by. I also have an excellent, patient and understanding rheumatologist, GP and gastroenterologist.
I have always enjoyed knitting, sewing, and crochet, but now my hands aren't as dexterous as they used to be, so over the last few years I have dabbled in cross-stitch, ribbon embroidery and have discovered a passion for card making, which I am trying to turn into a bit of a money-spinner! Gardening is a favorite too, but I find I need more help from my "apprentices"!
Life certainly has its challenges. It seems a new one crops up every week! Despite being heard on several occasions to mutter between gritted teeth "I don't want to be here anymore," I would not miss it for quids!
Wow! Time does fly when you are having fun! It has been three years since my story was posted on this page and trust me, life has not slowed an iota—medically speaking at least!
2002 saw the continuing saga of my ovarian cyst with more drainage and finally its removal. The cyst was 15x16x18 centimeters and contained more than two liters of fluid.
2003 had added to the usual six months of tests trying to determine whether or not I had chronic myelogenous leukemia (CML)! This included a bone marrow biopsy and numerous tests and visits to a hematologist/oncologist.
2004 held more trips to the hand surgeon who told me he would not operate on my finger because I had scleroderma! The end section of my middle finger on my left hand is turning 'up' and could end up as much as ninety degrees from normal. So that sent me off to more hand therapy and finger splints, which were all pretty useless. Fortunately the finger has stabilized—fingers crossed!
I also underwent a liver biopsy as my gastroenterologist thought the methotrexate was causing problems! I went off the medication for seven long painful weeks until my rheumatologist sent me for a second opinion and
I was allowed back on it.
Then followed a prolapsed disc in my back, which saw fruitless sessions with the physio, which usually ended with me being in more pain than when I started. At the end of the last session I was sure he would have to call an ambulance to get me off the bed. I went straight home and rang my rheumatologist and had epidural cortisone under scan.
2005 The fun has not stopped this year either! Another six months of investigations occurred when blood appeared in the urine. A mycobacterium was found and it was suggested I had something in the tuberculosis (TB) family. The symptoms have now all but gone and no one is any the wiser as to what it was. Ooh, I do like to be different!
In the meantime I developed several calcinosis deposits on my fingers, the most painful being on the pad of my right thumb and right little finger. I have been to see another surgeon and will have them operated on in December.
I also had a non-cancerous lesion lasered from my face.
My monthly/six weekly visits to my wonderful rheumatologist continue, with cortisone injections to either both shoulders, left hip or either knee.
So after all that I have another hand surgeon, gynecologist, physio and hand therapist to add to the list as well as a cardiologist, plastic surgeon and hematologist/oncologist. As for the list of tests and medications? Well we will not go into that!
The majority of these I know are not scleroderma-related, but they are all part of my 'rich tapestry of life' and their diagnoses, treatments and outcomes are all affected by it.
I firmly believe things happen for a reason and I believe I am going through all this to teach. I am long retired from my career as a primary school teacher, but I am still teaching doctors, nurses, radiologists, and many others both in and out of the medical profession about scleroderma and other conditions like Watermelon Stomach. Mind you it does get to the stage when I am sure I see medical professionals quaking in their boots when I appear and I am sure they party after I leave.
Things are always interesting when it comes to my medical challenges! And I do often wish I could take a 'long service leave' for a while!
I cannot wait to see what happens in 2006!
(Email address withheld.)
Story submitted 4-29-02
Story posted 5-6-02
Story edited 5-7-02
Story update edited 11-19-05 JTD
Story update posted 11-23-05 SLE
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.