My Diagnosis Was Gut-wrenching, but Life Gets Better
The phone rang on a Friday night. I answered it thinking the call probably was from another annoying solicitor. Instead, it was the voice of the person who would introduce me to my disorder.
The nurse told that me my tests had come in, and I had scleroderma.
Finding answers
I wasn’t sure what to do with the news. I could hear my inner voice demanding answers and asking, “What in the world is scleroderma?” Against my better judgment, I turned to the internet.
Within minutes, I found terrible statistics and read about the possibility of debilitating ailments. All of the information associated with this autoimmune disorder was horrifying. I learned of hands being crippled, lungs becoming scarred, and the many ways this monster can cause death. I read about the “lucky” ones who lived for 10 years.
Doctor, tell me I’m OK
I vividly recall sitting on the crinkly white paper in the doctor’s office. Although the walls were painted a cheerful yellow, the room felt lonely and cold. Why don’t they have motivational posters in doctor’s offices, I wondered. Looking at the bare walls and sterile medical supplies offered no comfort.
I clung to the idea that there might be a cure. But when the doctor entered the room, he crushed that hope. However, he also explained the ways that we would fight to stay one step ahead of the disease.
Losing control
If you have ever been to a train station during rush hour, you’ll have an idea of the pace of the thoughts going through my head. They were like a crowd of people fighting to be heard. Some voices demanded a second opinion. Others cried out in fear. My thoughts were so chaotic I was unable to make sense of anything.
“Are you OK?” my doctor asked. I realized he had been talking to me, but I was paralyzed with fear. To keep from screaming, all I could do was grip the paper underneath me like I was holding the handlebars of a motorcycle.
I should have told him I was freaking out because the internet told me I was going to die! I believed that this was the end, and there was nothing I could do about it. I’m not sure why I responded the way I did. I told him I was OK, but it was a lie. I was far from being all right.
As I spun out of control, I asked him how long I had to live. He couldn’t give me an answer. This would be my first lesson about scleroderma. It is an individual disease and no two people go through it the same way. The answer to my question depended on how my body reacted. Even less comforting, the only thing we could do was to repeat the tests in three months to see if I had a severe form of the disease.
Waiting is the hardest part
The three-month wait was challenging. My husband and I would pass each other in the hallway and our eyes would lock. Fear and sadness nagged at us. It was like living life on hold.
I remember one night cuddling my cocker spaniel while watching my kids sing and dance to princess songs. Snug on the couch, I was enjoying the moment when suddenly it hit me: I might not get to see them dance at their weddings, and I might not even outlive my dog.
My heart tightened and the hairs on my arms stood up. Suddenly, the world felt dark. I had to leave the room as tears poured from my eyes.
Life after diagnosis
At the time, I wish someone would have told me that research and medicine would advance significantly in the next 10 years. Today, many of us continue to live full lives despite our diagnoses. For those recently diagnosed, it’s important to find sources of information that focus on living with the disease.
Once we make it through the initial testing storm, the clouds part and the world brightens again. I no longer see my life as a dead end. In fact, I make more plans now than I did before my diagnosis. Not only will I be at my daughters’ weddings, but I also will dance my heart out in celebration when those days come!
Scleroderma is not the end of my story — not by a long shot.
For columnist Lisa Weber, each birthday prompts reflection about how far she’s come. (Courtesy of Lisa Weber)
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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Asheran Rahim
Thanks for sharing. I too have this terrible killer. It's getting worst. May God help us.
Lisa Weber
Praying for all of us!
Caryl St Clair
Lisa, I am in New Zealand and self diagnosed my scleroderma 40 years ago. When I told my Dr she replied, 'no we're not going there it's too awful'. End of conversation. 15 years later in a different part of the country a new Dr seeing me for the first time asked me if I had been tested. My answer, no. He arranged for the tests at a large hospital where I was told I had it, no form of it mentioned. I had and still have bad raynauds and now tightening feet. I am 75. In the US. I see various treatments are used, in my country extremely few. Our rheumatologists are expected to see and treat all autoimmune disorders. There are no scleroderma specialists and few know much about it, their patients know much more. Well done Lisa to climb from your diagnosis and create a great life. Warm regards, Caryl
Lisa Weber
Wow Caryl! That’s a challenging life having to live with this without doctors that didn’t understand for so many years. I still find most of my answers from support groups. There are many online. SclerodermaNews also has a great list of columnists writing about their experiences. We definitely can learn a lot from eachother!
Christine Marchio
Hi,
My name is Chris I am from MI. I have had scleroderma for a long time. Henry Ford Hosp. gave original diagnosis, when I was 40, but when my very supportive Dr. died I went into denial for 10 years. I transferred to U of M in Ann Arbor and was lucky and found an incredible rheumatologist who connected me with a Dr. James Seibold who specialized in this auto immune disease. He has since relocated to New Jersey, but between the two of them I am hopeful. And I'm 72! Prayer works and do your Dr. research. Don't give up. I was also a teacher and I danced at my daughters' weddings and became a Grandma (Babka) to 4 Amazing Grandchildren. Have a Great and safe Thanksgiving!
Jeanette Perez
My daughter suffers with this disease and I take care of her for the most part .It's agonizing and sometimes I can't help her. I would take her place anytime just so she can feel better and have a normal life .She had it since my grandson was born maybe before that a little over 16 years . My ? Is how can I get information as to how to cope better for and even myself . I need a support group thati can be a part of. Thank you Jeanette Perez
Lisa Weber
Jeanette, I’m so sorry your daughter is suffering. I couldn’t imagine my daughters having this monster! But she’s so lucky to have you. I found help through Facebook groups for Scleroderma. There are many for caregivers too! I’ll keep thinking of ways to help you find the support you need. Praying for you and your daughter.
Robert Altonen
Lisa Weber,
I just want to let her know I suffered the same reaction she did .I received my diagnosis when I was 54 years old. I am now going to be 69 in January . I have some difficulties but I told myself I was going to beat this illness if its the last thing I do . First of all a doctor at the Cleveland Clinic handed me some papers,I asked her what they where and she told me they where disability papers. I threw them on the floor and said no way . I told her I was going to retire when I turned 67,SHE JUST LOOKED AT ME and I said good bye. I have had a number of signs from God over the years that life would be tough and it sure was. I only have 60 %lung capacity so I can't run but that didn't stop me from going to the gym and working out. I have done this regularly for 15 years except for the last 6 months because of COVID 19.Shortly after my diagnosis my wife contacted the University of Michigan where I went through infusions. Keep in mind I lived in Ashtabula Ohio on Lake Erie and it was at least a 5 hour drive 1 a month for 6 months. After some time I didn't seem to improve. With out my knowledge my wife contacted the University of Pittsburgh Fulk medical center .THEY SAVED MY LIFE ALONG WITH MY WIFE AND MY FAITH. I went from riding in a wheel chair to playing golf. I now live in Cincinnati with my wife and son and his wife and 4 grandkids . If I had given up I wouldn't have seen my sons wedding or the birth of 3 boys and 1 girl. I CONTINUE TO BE TREATED AT THE UNIVERSITY OF CINCINNATI. They do a good job of maintaining my health. By the way I did work until I retired 2 years ago. My job wasn't physical but I worked for a great company and they worked with me.SO DONT GIVE UP DO WHAT YOUR DOCTOR SAY AND WORK OUT KEEP PHYSICAL.
GOD BLESS YOU AND DONT BE AFRAID TO ASK HIM FOR HIS HELP. I could go on for hours but will end it here.
Bob Altonen
Lisa Weber
Thank you Bob! Fighting this disease is challenging, but worth it! Best wishes for your future!
Christine Marchio
Hi,
My name is Chris I am from MI. I have had scleroderma for a long time. Henry Ford Hosp. gave original diagnosis, when I was 40, but when my very supportive Dr. died I went into denial for 10 years. I transferred to U of M in Ann Arbor and was lucky and found an incredible rheumatologist who connected me with a Dr. James Seibold who specialized in this auto immune disease. He has since relocated to New Jersey, but between the two of them I am hopeful. And I'm 72! Prayer works and do your Dr. research. Don't give up. I was also a teacher and I danced at my daughters' weddings and became a Grandma (Babka) to 4 Amazing Grandchildren. Have a Great and safe Thanksgiving!
Lisa Weber
I love this! Have a wonderful thanksgiving with your family!
Sylvia F Cahela
Hi,
I have systemic scleroderma. Haven't seen a rheumatologist as of yet. My family doesn't know. I found out last year. My daughter and do not speak.I don't see my grandchildren. Without God I would not be able to survive-all alone by myself. I put it away , far away and try not to think about it. My hands hurt the most and there is scarring on left lung. Not taking any medication for it. It's extremely lonely in my world. I'm 54 received my disability January of this year. After divorcing my husband and became homeless for a few year's. I don't understand what's going on with my body, do how can I explain it to my family. No friends left.
Lisa Weber
I’m so sorry Sylvia. I try to focus on doing things so I don’t live with regrets. It’s okay if you don’t want them to know. And if you do- don’t worry about how you’ll explain it. Just share your feelings. But ultimately, do what will make you happy. We can only control ourselves, our feelings and our own reactions. Best wishes to you!
Peggy Powell
Lisa
I dont know you,but I read your story,was heart wrenching.
I am so sorry you have to go through this horrible disease,but I know we have a great big Wo derful God who still answeres prayers and heals.
I am praying for you and all of the ones that responded to you.
My heart goes out to all of you.
Peggy Powell
Monroe Louisiana
Lisa Weber
Thank you Peggy!
Donna
Hi Lisa. My ex-husband had the same diagnosis in his early 20's when our daughter was 2. With a healthy diet and exercise he did dance at our daughter's wedding and saw a grandson be born.
Lisa Weber
Thank you for sharing Donna.
Amy Houston
Lisa,
Thank you for sharing. I was diagnosed 32 years ago at the age of 21. I started having symptoms at age 16. The disease has affected my esophagus, lungs, heart...I have severe Raynauds and Sjogren’s as well as a couple of auto immune diseases that affect my eyes. My hands are contracted and I’ve lost all the toes on my right foot. It’s been a long road. I had the same experience as you, looking up information and thinking I had about seven years to live, terrifying at age 21. I live in Missouri and although I had a good rheumatologist for a long time, he has since retired. There are no Scleroderma specialty clinics here. If you were to recommend a place to go for an evaluation where would that be? I’ve heard a lot of people talk about Johns Hopkins and Cleveland clinic. I just want to know if my disease is being managed appropriately. Thank you for your help!
Amy
Lisa Weber
Amy, I’m so sorry your disease presented so early in life and has done so much damage. As for a doctor/clinic, I can’t say it’s the best place, but I can speak from experience. I go to Johns Hopkins in Baltimore. I drive 14 hours 1-2 times a year to be seen there and I’m very happy! My doctor is always available and calls immediately if I’m in the hospital or suffering from something urgent. I use the “my chart” online system to keep her updated and ask questions all the time. I see Dr. Ami Shah, but all of them meet to go over patients. She is my team captain and talks to my local doctors to make sure we are on the right track. I pay out of pocket though- my insurance won’t cover the visit since it’s out of network. We look at it as a life policy- for us it is worth the money. I wish you all the best!
Robert Altonen
Amy, I now its a long way from your home but The University of Pittsburgh fulk medical center is terrific thay saved my life.
1-412-647-8161
Casey
I am 45 and was just diagnosed with systemic scleroderma about six weeks ago. It was terrifying to learn this news, just as you experienced, especially since my grandmother passed from scleroderma complications at age 68, and I knew the monster that this disease was. My symptoms have come on rather aggressively in the past few months. They include very swollen hands/wrists, feet/ankles, thick tight calves, very swollen/sore knees, sensitive/painful/itchy skin on my legs and forearms, heartburn, hard/sore feet, and Raynauds. I have started taking Cellcept but am unsure if it will relieve all of these symptoms. There is still so much I don't know and its very scary. Its been comforting to hear about others going through this and still enjoying long fulfilling lives. Right now I just want to be able to kneel on the ground again. I can't get up/down from the floor anymore and I never realized how often I was down there between my teaching job, having two boys, and a dog to enjoy. Still grateful for so much, but would love to not think about or feel my scleroderma for a whole day. Its been life changing and within such a short period of time. Thank you for your column-
Lisa Weber
Hi Casey, being diagnosed with this disease is definitely terrifying. I’m glad you have doctors that know what’s going on and have you on Cellcept already. Hang in there! The beginning is always tough. Stay strong and look for ways to adjust so you can keep moving forward. Best wishes to you!