My name is Kathleen Kelly and I have had scleroderma for five years. To be exact, I am 31 years of age and have been to hell and back in these past five years.
My husband and I recently purchased this computer so I could have information about my disease and hook up with individuals like myself. I desperately am in search of someone who has similar problems to myself.
I have pulmonary fibrosis,esophageal reflux disease, peripheral vascular disease, raynaud's, myositis and due to medicines and their side effects, I have developed osteoporosis, ovarian failure and prematue menopause. Keep in mind I am only 31 years old.
Medicines are a good thing and a bad thing. I think I should know, especially after being on chemo-therapy for two years , prednisone for five years and a host of other immuno-suppressive drugs.
I am currently awaiting a lung transplant. The physicians think I am an excellent candidate but to be honest I am scared to death and the furthest thing from my mind is a lung transplant. I have been on the list for two years and have turned down a match. I can not and will not take on a transplant until I am mentally prepared, which I admit -I am not!
You see, I am a fighter and I plan on fighting until I can no longer fight anymore.
A little information about myself outside of my scleroderma side. It is weird that I just said that , my scleroderma side, because I don't feel like completely ME ever since I got sick. Oh how I wish my husband could know ME without scleroderma.
Anyway, I am a medical social worker in a hospital in a Philadelphia suburb. I am generally on my feet alot but recently have had to spend most of my time sitting. I love my job and it is breaking my heart that I am having difficulty ambulating. I work in a hospital setting so I am constantly up on the latest and can empathize with the patients that are hospitalized.
I am also a very educated and compliant patient. I think it is extremely important for you to know your body and to be very vocal to the treatment team in expressing what it is you want and need in order to maintain a quality of life that is best for you.
I am married almost 2 years to a wonderful man who has been very good to me these past years . He is a very loyal person and he has given me the strength I have today to fight.
I am going to sign off right now and hope that those reading keep the faith and keep on fighting. They don't call us the FIGHTING IRISH just because we like NOTRE DAME FOOTBALL!!!!
Kathleen O. Kelly
Update - Hello again everyone! It has been since October 1996 since you last visited my personal experience with scleroderma. You remember, I'm the fighting Irish Gal. Well, so much has happened since then and I'm proud to say I'm still fighting this battle with great outcomes.
unfortunately, last October 96, I had a severe myositis flare up . I could hardly walk, drive sleep or excercise. I was on a low dose of prednisone-4mg. After seeing my MD he increased the amount to 40 mg(ouch)!! Needless to say I was pretty disappointed but within a week I began to feel instant relief. I then continued my excercise(water therapy)3x a week and began to feel like myself again. Since then I started to do things for myself, take control of my body and of course never give up. I began taking vitamins, C and E religiously daily to boost my immune system so I would not get sick. And I got very serious with my water therapy going 3x a week.
It is now December 30th, 1997, over 1 year later. I am back down to a low dose of prednisone-7mg in addition to 150mg of immuran that I began taking since my last cytoxin tx 2 years ago. Outside of a fractured tibia last March, I FEEL GREAT!! I attribute so much of my progress to my water therapy, compliance with my medicines, diet, vitamins and my overall attitude. Of course I will always have scleroderma but scleroderma will never have me!
Oh and that lung transplant that I really did not want, I never had it! When I visited the transplant team in Pittsburgh last January 97, they decided to remove my name from the active list. My name has not been removed from the list, just placed as inactive. In the event I should get sick again, my name gets activated and hopefully my wait will be minimal since my time on the list had been served. It was the greatest news in the world to me, that this FIGHT had led to a major victory! My entire team of physicians are very impressed with my outstanding progress and have encouraged me to continue my excercise, diet (which is basically your average healthy diet with some substitutes due to my refux problems) and my overall ATTITUDE.
I never dreamed I could feel so good physically and mentally with osteoporosis, pulmonary fibrosis, ovarian failure, gastritis, esophagitis, raynauds, myopathy in both legs... BUT I DO! And hope that this great news brings hope to those who are suffering. I may not, physically, be the same person I was before diagnosed with scleroderma 6 years ago, but I feel every bit of myself again and hope that this feeling lasts a long, long time.
Remember: KEEP YOUR FAITH UP! KEEP YOUR FIGHT UP! KEEP YOUR HEAD UP! AND I'LL KEEP MY IRISH UP! Thank you to all who e-mailed me, your response has been overwhelming and I'm hoping to get back to everyone as soon as possible. All of you have been extremely supportive and I appreciate everyones input, except the digs about Notre Dame.
God Bless All of You! Kathleen Kelly
You can reach me at: tkko@erols.com
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