I was diagnosed with morphea scleroderma when I was only five. I am now twenty-four and trying to lead what we call a normal life. Well, at least as normal as it can be considering I have a disease that limits me from time to time.
I have fought being sick for as long as I can remember. I get tired very quickly if I do not slow down here and there. Right now I am battling severe muscle pains in my legs. My internist tells me it is not my scleroderma. I think it is probably related to that. I have tried about everything, arthritis medications, muscle relaxers and water exercises. Nothing seems to help, they come and go. Some days I feel like I could run a marathon and other days I can barely find the strength to get off the couch.
I work in the medical field and have come to the conclusion through all this there are always worse things in life and be thankful you can still stand tall most days. (Of course, these are the days we find the strength to get off the couch.)
I have gotten used to the stares everyone casts my way because in their eyes I am different. Unique, I guess. Where I am from there isn't anyone around who has this disease that I am aware of. I am interested in talking with others and seeing how they cope day to day.
I just wanted to update my story for all of you out there. For the past six months I have been battling this disease and it seems like a year. I now suffer from narrowed patella-femoral joint spaces and am getting ready to start Synvisc injections. I hope that maybe they will give me a couple of good months.
I am twenty-five and find normal activities so strenuous now. There are times when I just want to throw in the towel and quit, but I keep telling myself there are worse things in life to suffer from and I feel fortunate that I am able to still walk (or shall I say hobble) on my legs.
I think the only way I have been able to get through this so far has been because of my wonderful family. Without my mother by my side to support me I probably would not still be holding my chin up.
I just want everyone out there to know that we may feel like the world is caving in on us but take a look around and see that things could be worse.
Granted, I do look around from time to time and think I wish I did not have scleroderma but I think God has a plan for all of us even though I wonder what this plan involves with me.
I wish all of you out there the best and enjoy the good days!
The last time I posted, it was only under morphea. Now I am not sure what category I belong to because some days even I am not sure.
To rehash, I am almost twenty-seven years old now and since the age of six I have had morphea/linear, up until a year ago, or so I thought. For almost two years now I have not felt well and we all know our bodies well enough that we know when something is wrong or is acting different. As most of my doctors tell me I am "special". Now I do not deem myself special, but I guess for them I am sometimes a medical mystery.
I suffer from the usual fatigue, severe muscle and joint pain. However, things got worse with time. I began to be short of breath, had tachycardia and nausea. Well, after seeing many physicians, they have decided I now have generalized morphea and linear, morphea profunda, and systemic scleroderma. Now if this isn't bad enough, I also have mild decreased diffusion capacity with my lungs, gastroparesis, GERD (heartburn) and esophagitis.
Just when you think things can get no lower, they do. However, I was not shocked as I think deep down I knew that my disease had progressed.
I went to the Mayo Clinic for suggestions and help because my local doctors were stalled on what to do and that is where I was told all of this. Now I want to say that we all have good and bad days and most of them for me are bad, but I keep getting up and facing the day. One doctor told me nine months ago that I would never be able to work full time again. You know what? When someone tells me I cannot do something, my stubbornness kicks in and guess what? I am an X ray technician, and I am still working full time all day long on my feet.
Maybe I will not be able to do it for very long, but I am proving that where there is a will, there is a way. I am around patients all day long who suffer also, and to see those who are strong enough to keep trying is what keeps me going.
I also have a wonderful support team with my family. Without my mother to help me I would be lost and probably have given up long ago. I think for anyone to tackle this disease they must have that support in order to get up out of bed and take on the challenge of facing another day. I want to commend all of us who still keep going no matter what.
I do not know about anyone else but a lot of days I put on a smile even though deep down I am not sure I can take another step, and I can fool most strangers. It is so hard for anyone who has never had this disease or had a friend or family member to even begin to understand what our lives are like. We are "special" and deep down we have to all keep telling ourselves this in order to keep fighting.
I have finally given in to the fact that I can no longer work. I have not worked for almost a year now and am still fighting to obtain Social Security Disability benefits. Talk about a headache dealing with the paperwork and waiting. Anyone who reads this, you have to keep your chin up and do not give up because the system is so stressful. Let alone the fact of dealing with Medicaid to have some insurance.
Healthwise, things have gotten worse. I have constant pain in my joints and muscles. Sometimes there is no relief. I feel lucky if I have a "fair" day out of the week. I am sure there are others out there who feel the same way.
My doctor asked me (since I am only twenty-eight) what am I going to do with my life, meaning do I have goals for the future. I can only look at him right now and tell him that I can only get through one day at a time. I do not know what the next day might be like. Some may call that looking at the glass as half empty, I call it looking at a glass half full.
I am coping each day by just making it out of the recliner. I have been seeing a counselor to discuss the issues that some of us have deep down of depression. I never wanted to admit that I was depressed, but I have realized how could I not be. I have a chronic illness and my life has changed dramatically since not working.
I think one thing that has kept me going is having a dog in the house. He makes sure I get up every now and then and move around to let him out. This is a good thing because with my pain and nausea it is hard to make myself get up.
I am still alive and kicking so that is a plus. I have, of course, had to give up working, which is okay because I know that I was not able to give my patients my full attention because I didn't feel good. I am an X-ray technician.
I find the most frustrating aspect of having an illness is that you find out just who your true friends are. Unfortunately, a majority of people whom have never had to deal with an illness either personally or by acquaintance, have no idea how an ill person feels. I must admit I have learned this because most of the people whom I had once considered my friends no longer are. I realized not to blame myself. I once thought maybe I had pushed them away, but after some time thinking I realized it wasn't me it was them who pushed me away. I am sure a majority of people can relate to this.
I still am the same person I was before I became very ill and I know that at least I have the empathy for others whom aren't feeling good. I have learned to mutter under my breath more when people see me out on rare occasions and tell me oh you look so good. I truly want to say are you crazy or blind? Instead I just have to shrug it off and realize that they are trying to be nice because only those whom know you best will tell you that you do not look good. By that I mean when your face shows you are hurting, nauseated, etc.
So with this I end my update saying its not your fault when people whom were once close to you no longer talk to you as often, it isn't your fault. One day they might know what it is like in our shoes!
Please feel free to email me.
Email: [email protected]
Story submitted 7-12-02
Story posted 7-12-02
Story updated 10-03-03
Story update posted 02-11-05 SLE
Story update edited 09-13-06 JTD
Story update posted 10-25-06 SLE
Story update edited 09-30-08 JTD
Story update posted 10-03-08 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Rare Types of Morphea
This story is featured in the book,
Voices of Scleroderma Volume 2
The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: