Until there's a cure, you're not alone!
Hello, my name is Kathy. I live in Houston, Texas. I was diagnosed with Scleroderma CREST on June 18, 1997. I remember this date so clearly. Before I was diagnosed I had about six years of problems with red, white, and blue fingers that were painful. I had stomach ulcers and esophageal reflux spasms that sometimes wound me up in the emergency room to get the good old GI cocktail and a shot. Oh, and I can't forget the numerous doctors who could only tell me I had ulcers and treated me with Malox, Tagamet, Carafate, etc. Not to mention when I would eat a half of sandwich it felt like I had eaten three because food got stuck between my esophagus and stomach so I ended up sticking my finger down my own throat to relieve the pressure so I would not wake up in the middle of the night choking on all the stomach acid.
I finally found a GI doctor who decided to run an endoscope and found eight ulcers in my stomach and seven ulcers in my esophagus. I was a pretty sick puppy at that time. He treated me with Prilosec and added a great bland diet to my life. This worked for about a year until the symptoms worsened. He then decided to do an esophageal motility test. This was a lot of fun. They ran what seemed like a foot long rubber tube down my nose to my throat and on down into my stomach while I swallowed sips of water as they pulled up the tube a little at a time and took pictures on the monitor. Keep in mind, they do not numb you for this wonderful procedure.
Well the test came back and my doctor said to me, "Kathy, this test is either wrong and we may need to do it again (WRONG!) or you might have scleroderma." My first words were "Sclero what?" So they ran the ANA blood tests. On June 18, 1997 I received a phone call at work from my doctor's nurse who stated, "Kathy your test came back positive for scleroderma. We need you to see a rheumatologist, but you can't get in to him for two weeks. And hopefully, it is in remission."
I asked her, "What is scleroderma? " She stated, "We do not know much about it so you'll have to see the other doctor." I am thinking, okay, a lady calls me at work and tells me I have some disease I have never even heard of, hopefully it's in remission and tells me to wait two weeks to learn anything about it. (NOT!)
So I went Internet surfing! That was wild. I found a lot of information, but not knowing which form of the disease I had was frustrating and scary. Two weeks passed and I met my first rheumatologist. I walked into his office with shorts on, and his first words to me were, "You definitely have Raynaud's. My legs were covered in purple splotches, and my fingers were blue. I said, "Cool. Now tell me what that means."
Final diagnosis was Systemic Scleroderma CREST. He taught me what the disease was and how to take better care of myself. He prescribed several medications to treat the symptoms. Then came the side effects of some of the medications. Then came all the changing of the medications. Then came my refusal to take some other medications. Then came the symptoms again. I felt like a revolving door.
Over time, I learned to deal with this disease as it became a normal part of my life. Since that day on June 18, 1997, I entered the Genesis study here in Houston, I have one of the best rheumatologists in the city, in my opinion; a good GI doctor, and dentist. Autoimmune disease threw me into early menopause according to my gynecologist.
Most of my teeth on the left upper and lower side have been pulled due to malabsorbtion of the jaw bone from scleroderma, and the right side. Some teeth toward the front are starting to loosen. I know they will all need to be pulled eventually. My digestive system does not work on its own because the poor motility of the intestine has slowed completely down so I have to take prescription laxatives on a daily basis and had to have surgery in 2001 as a result of that. (I won't go into any details). The skin on my fingers has become thicker, shinier, and they are harder to bend. The calcinosis sores on my fingers drives me nuts, as they become painful. This year one became so infected on my thumb, they admitted me into the hospital and discussed possible amputation and did surgery. Luckily they only cut out the infection down to the bone in my thumb. That was a four day hospital stay. Plus, I had home care health nurses to change the packing and bandages for a week, and another week of occupational therapy after that. It looks good now and is finally healing.
My joints hurt in my knees if I sit too long. I look like Grandma Moses getting off the couch, but once I am up and running I am good to go. Chronic fatigue is a problem. Sometimes it just comes in waves. I sleep sitting upward so I can keep from choking at night if I eat too late. Oh, and let's not forget the ulcers on my toes that take months to heal. In the back of my mind, I am wondering if they will heal at all and if amputation will eventually be the only option left. I also have the digital pitting that is making the tips of my fingers deteriorate.
Thank god I live in Houston, Texas where the weather is hot ten months out of the year. I love the heat! My coworkers have a hard time coming into my office because I keep the space heater on all the time so my fingers won't ache and do the 'patriotic' thing.
This disease has been a roller coaster ride both emotionally and physically, but I know it could be worse. I normally keep a good attitude and thank God, it's not any worse than I know it could be. I have a great support system with my husband, family and friends. I think the best thing anyone could do for someone with any kind of disease is ask questions and educate themselves. The worst thing people do, for me anyway, is to have pity and feel sorry. I do not feel sorry for myself. I was given this disease for a reason. I may not know what that reason is, but it's okay, I will someday. Maybe it's to share my story so that others do not feel so alone in this fight and to educate the public on a disease that is so rare and unheard of.
I'm very fortunate to be able to still work full time even though I have set backs periodically, and have the pleasure of visiting the hospital for a few days at a time. Gets me out of cooking dinner and cleaning house. Thank you to the web site for letting me publish my story. I hope it helps someone else.
~ Update 12-30-07 ~
I first posted my story June 2002. It has been five years since I updated. I am still alive, thank goodness, working full time and doing well.
Over the past five years I have still experienced severe Raynaud's attacks, numbness and pain in my fingers and toes, and joint pain in my hips and knees. I have periodic bouts of fatigue. I still can't eat a whole lot at one time due to choking.
In November 2006, my right index finger became infected underneath the fingernail. It became so painful I ended up at the emergency room where they removed the nail and gave me antibiotics. This didn't work. I went to my doctor who referred me to an ortho doc who first sliced the side of my finger and packed it to see if any infection would drain. This didn't work. I went back a week later and was given more antibiotics. This didn't work.
One morning I woke up and the pain was so severe I called my rheumatologist who met me in his office that morning and performed an MRI. He found osteomyelitis (bone infection). He immediately called my orthopedist, who sent me to the hospital and they performed surgery and cut out the infected part of the bone. After two weeks the pain did not stop. I went back to my orthopedic doctor, who did an x-ray and found the remaining part of the bone had fractured. He put me in a splint and sent me to occupational therapy. At the same time I was put on IV antibiotics with a port in my arm for three months. I gave myself two types of IV infusion every twelve hours for three months at home and at work.
After the infusion was completed, the pain returned. I then made the choice of a partial amputation of the index finger to the first joint and more therapy. After one month of therapy it did not heal and all of the tissue around the amputation site had to be removed and the bone was protruding out. I went back to my orthopedic doctor, who looked at this and said, "You know what I am going to say don't you?"
Two weeks later I was back in surgery where he amputated the entire index finger in June of 2007. This entire process from beginning to end lasted nine months. For nine months I was having to take pain medications and antibiotics. I missed a lot of work. Then I would go to work and try to function there while taking pain pills.
I struggled trying to keep up with somewhat of a normal life. My couch and the television was my normal life during that time, I had no energy, my immune system was shot, and my attitude was terrible.
It is now December 2007, and I am doing good. I am off all pain medications. My hand is still stiff and sore but it has healed. I want to thank my husband for being there for me with no complaints, who took care of and supported me. I love you, Robert.
~ Update 01-18-12 ~
In January 2011, I started having severe bouts of Raynaud's in both of my hands. Texas had a colder Winter than normal. In 2005 I had my right hand index finger amputated due to non healing ulcers.
So I went to my hand surgeon, who suggested Botox injections for my left hand. I went to another doctor who did ten injections in the palm of the hand. Mind you my middle finger already had an ulcer on the tip. She told me I should start to feel relief within 10 days. Well, 10 days passed and my fingers were still numb and painful. So I went back to the hand surgeon, who then suggested another sympathectomy, but this time he would go into each finger to clean out the arteries.
On July 13, 2011 this surgery was performed on my left hand fingers (the three fingers that I had left on this hand besides my thumb.) Within two weeks the ulcer on my middle finger worsened and became unbearable. I also aquired two additional ulcers on the same finger.
On August 1st the middle finger was amputated. Then I acquired another ulcer on my right hand index finger tip. On August 10th, this finger was partially amputated down to the first PI Joint.
So here I was, both hands bandaged, not able to go back to work, or bathe, dress myself, drive or clean my house. My husband and family found themselves doing all of this for me within a matter of one month. Talk about humiliating, difficult and shocking. Not to mention all the pain medication I was taking that didn't allow me to think straight half the time.
The sympathectomy surgery was not healing as I don't have good blood flow to begin with. My hand and fingers looked and felt like a butchered up piece of meat. There are no words to describe the pain I felt through all of this.
In September the right hand index finger partial amputation did not heal at the amputation site so the rest of the finger had to be amputated. I had to sleep in my recliner from July through October because I was not able to sleep in my own bed.
In the meantime, mind you I worked for a law firm that represented people with disabilities against the Social Security Administration. Thirty days of not being able to return to work, I received a call from the human resources director stating they could no longer keep me on the payroll and they were mailing me Long Term Disability documents. This call came one day after an amputation.
With the stron pain medications I was taking then, it took a few days to really realize that my days of working are now over. I couldn't believe it. I received the long term disability (LTD) documents. My sister-in-law had to fill them out as I couldn't write. She took pictures of my hands, 8x10 full color photos, and mailed them in. I was approved immediately.
When you file for LTD they mandate you to file for Social Security Disability (SSDIB). On August 18, 2011, I filed for SSDIB and again sent full color photos. Within 90 days I was approved at the initial application process. I was very lucky because most cases go through appeals to the hearing level. It also helped because I worked in this field and know how this process works.
It is now January 2012. The sympathectomy damaged my left hand ring finger; the tip and nailbed died, the bottom inside would not heal and the tendon was exposed. So in October 2011 I had surgery for an integrity skin graft, then 30 days later I had another graft, where they took skin from my arm for this finger.
The graft died two weeks ago and the tendon is exposed again. The tip of the finger has dried gangrene and we are hoping this just falls off.
I had an angiogram of both arms and hands two weeks ago that showed I have 95% blockage of blood flow from the wrist in both hands. No wonder nothing heals.
My surgeon discussed a surgery that is done on renal patients called Arterialization of the Venous System. This surgery ties an artery directly into a blood vein which is supposed to supply direct blood flow to the hands and fingers. I hope this works. At this point I am willing to try anything to prevent more amputations.
So since July 2011 and January 2012 I have had six surgeries, and I had to stop working and file for disability. Talk about a rollercoaster ride, but this ride isn't over yet. The pain has subsided and after taking numerous amounts of pain medications for months I am finally starting to get my energy back and function on my own. I can only use one hand but it's enough. I've hired someone to clean my house once a month and this helps.
I am very thankful for my husband and my family who have supported and helped me through all of this. Those family members deserve to be recognized in this update.
Thank you: Chrissy and Michael, my son Brad and his wife Nicki, my daughter Sarah and her husband Andy, my niece Pam, Ellen and David, Carol and Dwight, my friend Ana and most of all my husband Robert. I love you all and you will never know how much your support has meant to me.
| Kathy Baker
New Email: firstname.lastname@example.org
Story submitted 6-28-02
Story posted 7-11-02
New email posted 7-13-04 SLE
Story update edited 12-30-07 JTD
Story update posted 01-23-08 SLE
Finger ulceration photo by Kathy Baker.
New email posted 04-03-08 SLE
Story update posted 01-18-12 SLE
Slide Show added 02-08-12 SLE
Story Editor: Judith Thompson Devlin
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