Why I Feel Lucky Despite My Battle With Scleroderma


I​ ​have​ ​spent​ ​the​ ​majority​ ​of​ ​my​ ​adult​ ​life​ ​sick.​ ​When​ ​I​ ​say​ ​sick​ ​I​ ​am​ ​not​ ​speaking​ ​about​ ​a common​ ​cold​ ​or​ ​even​​ ​appendicitis.​ ​My​ ​last​ ​year​ ​as​ ​a​ ​teenager​ ​I​ ​was​ ​diagnosed​ ​with​ ​a​ ​rare, chronic,​ ​autoimmune​ ​disease​ ​called​ ​systemic​ ​scleroderma.​ ​Scleroderma is​ ​an​ ​autoimmune​ ​disease​ ​that​ ​affects​ ​the​ ​skin​ ​and​ ​internal​ ​organs.​ ​It​ ​also​ ​causes​ ​hardening and​ ​thickening​ ​of​ ​the​ ​skin​ ​and​ ​​ major​ ​organs.​ ​Scleroderma​ ​has​ ​no​ ​know​ ​cure​​.

Being​ ​told​ ​as​ ​a​ ​late​ ​teen​ ​that​ ​you​ ​have​ ​a​ ​debilitating,​ ​most​ ​likely​ ​terminal​ ​illness​ ​that​ ​has​ ​no known​ ​origin​ ​or​ ​cure​ ​was​ ​more​ ​than​ ​a​ ​shock.​ ​It​ ​was​ ​like​ ​I​ ​was​ ​pushed​ ​in​ ​front​ ​of​ ​a​ ​moving train.​ ​Following​ ​my​ ​initial​ ​diagnosis,​ ​I​ ​had​ ​a​ ​series​ ​of​ ​tests​ ​and​ ​procedure.​ ​It​ ​started​ ​with​ ​routine blood​ ​work​ ​and​ ​a​ ​chest​ ​x-ray.​ ​​​The​ ​blood​ ​work​ ​was​ ​to​ ​check​ ​to​ ​be​ ​100 percent​ ​sure​ ​that​ ​I​ ​indeed​ ​have scleroderma.​ ​You​ ​would​ ​think​​ ​they​ ​would​ ​have​ ​done​ ​this​ ​blood​ ​work​ ​prior​ ​to​ ​telling​ ​me​ ​I​ ​had this​ ​rare​, debilitating​ ​disease,​ ​but​ ​hey,​ ​I’m​ ​not​ ​the​ ​person​ ​with​ ​the​ ​MD,​ ​so​ ​what​ ​do​ ​I​ ​know? ​

 

They​ ​do​ ​a blood​ ​test​ ​to​ ​check​ ​your​ ​ANA.​ ​ANA​ ​stands​ ​for​ ​antinuclear​ ​antibodies.​ ​95 percent​ ​of​ ​patients​ ​with scleroderma​ ​have​ ​elevated​ ​ANA​ ​levels​ ​in​ ​their​ ​blood​ ​stream.​ ​I​ ​was​ ​also​ ​told​ ​I​ ​need​ ​to​ ​do​ ​a​ ​PFT (pulmonary​ ​function​ ​test)​ ​and​ ​a​ ​chest​ ​x-ray.​ ​Those​ ​two​ ​tests​ ​are​ ​tests​ ​that​ ​check​ ​your​ ​lung function​ ​and​ ​they​ ​check​ ​to​ ​see​ ​if​ ​there​ ​is​ ​any​ ​scarring​ ​on​ ​the​ ​lungs​ ​or​ ​pulmonary​ ​fibrosis​ ​yet. Lastly​ ​I​ ​had​ ​to​ ​have​ ​a​ ​barium​ ​swallow​ ​test​ ​done.​ ​This​ ​test​ ​is​ ​to​ ​check​ ​your​ ​esophagus​ ​and mouth​ ​and​ ​also​ ​to​ ​evaluate​ ​your​ ​ability​ ​to​ ​swallow​ ​in​ ​different​ ​physical​ ​positions.

Of​ ​course​ ​I​ ​was​ ​hoping​ ​ ​all​ ​of​ ​these​ ​tests​ ​would​ ​come​ ​back​ ​completely​ ​fine​ ​and​ ​my diagnosis​ ​would​ ​just​ ​be​ ​a​ ​big​ ​mistake!​ ​Unfortunately​ ​for​ ​me,​ ​that​ ​did​ ​not​ ​happen​ ​in​ ​the​ ​slightest. My​ ​ANA​ ​was​ ​positive​ ​with​ ​high​ ​levels,​ ​my​ ​PFT​ ​was​ ​abnormal​ ​for​ ​a​ ​woman​ ​my​ ​age​ ​and​ ​my chest​ ​x-ray​ ​showed​ ​the​ ​start​ ​of​ ​scarring​ ​around​ ​the​ ​outer​ ​edges​ ​of​ ​both​ ​of​ ​my​ ​lungs!​ ​All​ ​bets were​ ​off​. It​ ​was​ ​100 percent ​true: ​I​ ​had​ ​systemic​ ​scleroderma​ ​and​ ​there​ ​was​ ​nothing​ ​I​ ​could​ ​do​ ​to make​ ​it​ ​disappear.​

​”How​ ​could​ ​this​ ​be​ ​happening?”​ ​I​ ​was​ ​a​ ​healthy,​ ​active,​ ​young​ ​woman.​ ​”What did​ ​I​ ​do​ ​wrong​ ​to​ ​develop​ ​this​ ​disease?”​ ​Those​ ​questions​ ​and​ ​about​ ​a​ ​hundred​ ​more​ ​would​ ​race through​ ​my​ ​mind​ ​on​ ​a​ ​daily​ ​basis.​ ​I​ ​could​ ​not​ ​go​ ​on​ ​with​ ​my​ ​life​ ​living​ ​in​ ​the​ ​dark.​ ​I​ ​wanted​ ​some answers!

About​ ​a​ ​month​ ​after​ ​my​ ​diagnosis​ ​I​ ​hit​ ​the​ ​books​ ​hard!​ ​I​ ​wanted/needed​ ​to​ ​know​ ​everything​ ​I could​ ​about​ ​this​ ​disease​ ​that​ ​by​ ​now​ ​was​ ​affecting​ ​the​ ​skin​ ​on​ ​my​ ​face,​ ​my​ ​hands​ ​and​ ​fingers, my​ ​lungs,​ ​my​ ​throat​ ​and​ ​how​ ​I​ ​swallowed​ ​and​ ​ate​ ​food.​ ​​​I​ ​wasn’t​ ​going​ ​to​ ​just​ ​let​ ​this​ ​disease take​ ​me​ ​for​ ​a​ ​wild​ ​ride.​ ​If​ ​I​ ​was​ ​going​ ​to​ ​be​ ​living​ ​with​ ​scleroderma,​ ​I​ ​most​ ​certainly​ ​wanted​ ​to​ ​be in​ ​the​ ​driver’s​ ​seat​ ​controlling​ ​the​ ​speed​ ​and​ ​direction​ ​of​ ​this​ ​disease​ ​and​ ​how​ ​it​ ​would​ ​ultimately affect​ ​me​ ​both​ ​emotionally​ ​and​ ​physically. But there​ ​was​ ​absolutely​ ​not​ ​a​ ​thing​ ​regarding​ ​scleroderma​ ​and​ ​how​ ​it​ ​is​ ​treated​ ​on​ ​the​ ​internet!

The​ ​most​ ​I​ ​could​ ​find​ ​was​ ​about​ ​two​ ​sentences​ ​basically​ ​stating​ ​that​ ​scleroderma​ ​was​ ​a​ ​very​ ​rare disease​ ​that​ ​means​ ​“hard​ ​skin”​ ​and​ ​is​ ​mostly​ ​found​ ​in​ ​women​ ​in​ ​their​ ​late​ ​40s​ ​and​ ​is​ ​terminal. Wow.​ ​I​ ​could​ ​not​ ​believe​ ​my​ ​eyes.​ ​I​ ​could​ ​not​ ​find​ ​anything,​ ​no​ ​treatment​ ​options,​ ​no​ ​research, not​ ​even​ ​a​ ​clinic​ ​locally​ ​ ​I​ ​could​ ​go​ ​for​ ​treatment.​ ​This​ ​went​ ​on​ ​for​ ​about​ one​ ​week.​ ​I​ ​was determined​ ​to​ ​find​ ​something​, ​anything​ ​factual​ ​about​ ​scleroderma. Most​ ​importantly​ ​I​ ​needed​ ​to find​ ​somewhere​ ​in​ ​the​ ​US​ ​where​ ​they​ ​treated​ ​this​ ​disease​ ​and​ ​could​ ​help​ ​me,​ ​because​ ​locally​ ​I could​ ​not​ ​find​ ​a​ ​single​ ​soul​ ​that​ ​could​ ​even​ ​spell​ ​it​ ​correctly,​ ​let​ ​alone​ ​prescribe​ ​me​ ​medications and​ ​order​ ​tests.​ ​

My​ ​current​ ​doctor​ ​was​ ​good,​ ​but​ ​he​ ​only​ ​saw​ ​elderly​ ​women​ ​with​ ​scleroderma and​ ​his​ ​way​ ​of​ ​treating​ ​this​ ​disease​ ​was​ ​to​ ​treat​ ​me​ ​symptomatically.​ ​Which​, ​do​ ​not​ ​get​ ​me wrong,​​ ​is​ ​a​ ​great​ ​way​ ​to​ ​treat​ ​patients​;​ ​however,​ ​I​ ​was​ ​a​ ​20​-year​-old​ ​woman​ ​by​ ​then​ ​and​ ​I wanted​ ​to​ ​stop​ ​progression,​ ​not​ ​just​ ​be​ ​treated​ ​when​ ​I​ ​had​ ​a​ ​symptom.​ ​

By​ ​the​ ​end​ ​of​ ​the​ ​seventh day​ ​of​ ​my​ ​failed​ ​attempt​ ​at​ ​research,​ ​I​ ​was​ ​ready​ ​to​ ​give​ ​up​ ​entirely.​ ​Then​ ​I​ ​came​ ​across​ ​a hospital​ ​located​ ​in​ ​Pittsburgh​, ​Pennsylvania.​ ​At​ ​this​ ​hospital​ ​was​ ​a​ ​doctor​ ​who​ ​specifically specialized​ ​in​ ​scleroderma​ ​and​ ​scleroderma​ ​research​ ​for​ ​over​ ​40​ ​years!​ ​I​ ​had​ ​literally​ ​found the​ ​medical​ ​jackpot.​ ​Let’s​ ​just​ ​say​ ​after​ ​that,​ ​the​ ​rest​ ​is​ ​history.

Fast​ ​forward​ ​about​ ​15​ ​years​ ​later​ ​I​ ​am​ ​still​ ​going​ ​to​ ​see​ ​that​ ​doctor​ ​I​ ​found​ ​in​ ​Pittsburgh​ ​and​ ​I​ ​am still​ ​researching​ ​and​ ​learning​ ​about​ ​scleroderma​ ​and​ ​what​ ​I​ ​can​ ​do​ ​as​ ​a​ ​patient​ ​to​ ​have​ ​the​ ​best quality​ ​of​ ​life​ ​possible.​ ​16​ ​years​ ​total​ ​is​ ​a​ ​long​ ​time​ ​to​ ​be​ ​living​ ​with​ ​systemic​ ​scleroderma​ ​and as​ ​bizarre​ ​as​ ​it​ ​may​ ​sound,​ ​I​ ​consider​ ​myself​ ​pretty​ ​lucky​ ​to​ ​have​ ​made​ ​it​ ​this​ ​far.​ ​

Why,​ ​you ask? ​Scleroderma​ ​can​ ​very​ ​well​ ​be​ ​a​ ​deadly​ ​disease​ ​and​ ​even​ ​though​ ​I​ ​have​ ​limited​ ​hand, finger​ ​and​ ​wrist​ ​motion,​ ​arthritis​ ​and​ ​stiffness​ ​daily,​ ​difficulty​ ​walking,​ ​bending,​ ​kneeling​ ​and,​ ​for the​ ​most​ ​part,​ ​moving, along​ ​with​ ​pulmonary​ ​fibrosis,​ ​heart​ ​palpitations,​ ​dry​ ​eyes​ ​and​ ​mouth, acid​ ​reflux,​ ​gastroesophageal reflux disease (GERD),​ ​CREST disease​ ​and​ ​Raynauds​ ​phenomenon, ​I​ ​most​ ​definitely​ ​consider​ ​myself lucky.​ ​For​ ​starters,​ ​it​ ​definitely​ ​could​ ​and​ ​may​ ​very​ ​well​ ​be​ ​much,​ ​much​ ​worse​ ​symptom​-​wise and,​ ​to​ ​be​ ​frank​, ​I​ ​could​ ​have very well not​ ​even​ ​have been​ ​alive​ ​right​ ​now​ ​to​ ​be​ ​writing​ ​this​ ​for​ ​all​ ​of​ ​you​ ​to​ ​read.

I​ ​have​ ​found​ ​with​ ​this​ ​disease​ ​you​ ​have​ ​to​ ​take​ ​the​ ​good​ ​with​ ​the​ ​bad,​ ​and​ ​a​ ​positive​ ​attitude​ ​and outlook​ ​on​ ​your​ ​life​ ​goes​ ​a​ ​long​ ​way.​ ​I​ ​can’t​ ​change​ ​what​ ​has​ ​become​ ​of my​ ​life​ ​or​ ​go​ ​back​ ​and erase​ ​being​ ​diagnosed​ ​with​ ​scleroderma,​ ​and​ ​honestly,​ ​I​ ​really​ ​don’t​ ​think​ ​if​ ​I​ ​had​ ​the​ ​opportunity to​ ​I​ ​would!​ ​I​ ​have​ ​learned​ ​so​ ​much​ ​about​ ​myself​ ​that​ ​had​ ​I​ ​not​ ​been​ ​diagnosed​ ​with​ ​this​ ​disease I​ ​don’t​ ​think​ ​I​ ​would​ ​have​ ​ever​ ​known.​ ​I​ ​have​ ​met​ ​some​ ​truly​ ​amazing​ ​and​ ​inspiring​ ​men, women​ ​and​ ​children​ ​over​ ​the​ ​years,​ ​whose​ ​lives​ ​have​ ​touched​ ​mine​ ​and​ ​have​ ​forever​ ​changed my​ ​heart.​ ​I​ ​have​ ​been​ ​afforded​ ​some​ ​incredible​ ​opportunities​ ​to​ ​travel​ ​and​ ​advocate​ ​about​ ​this disease​ ​and​ ​to​ ​me,​ ​being​ ​able​ ​to​ ​share​ ​my​ ​passion​ ​for​ ​educating​ ​and​ ​raising​ ​awareness​ ​about scleroderma​ ​has​ ​really​ ​changed​ ​and​ ​shaped​ ​me​ ​into​ ​the​ ​strong,​ ​capable,​ ​passionate​ ​person​ ​I am​ ​today.

For​ ​those​ ​of​ ​you​ ​reading​ ​this​ ​who​ ​are​ ​newly​ ​diagnosed​ ​and​ ​scared​ ​out​ ​of​ ​your​ ​mind,​ ​who​ ​are alone​ ​and​ ​struggling​ ​to​ ​live​ ​in​ ​constant​ ​pain​ ​and​ ​have​ ​no​ ​support​ ​system, or​ ​even​ ​for​ ​those​ ​of you​ ​who​ ​are​ ​100 percent​ ​healthy​ ​and​​ ​just​ ​reading​ ​this​ ​article​ ​to​ ​pass​ ​the​ ​time, we​ ​all​ ​are​ ​given moments​ ​in​ ​our​ ​lives​ ​when​ ​we​ ​have​ ​a​ ​choice​ ​to​ ​make,​ ​a​ ​choice​ ​that​ ​can​ ​change​ ​our​ ​lives​ ​for​ ​better​ ​or​ ​worse.​ ​Most​ ​of​ ​us​ ​will​ ​choose​ ​life​ ​for​ ​the​ ​better. Living​ ​my​ ​life​ ​with​ ​scleroderma wasn’t​ ​a​ ​choice​ ​I​ ​got​ ​to​ ​make​ ​and​ ​it​ ​most​ ​certainly​ ​was​ ​not​ ​the​ ​kind​ ​of​ ​choice​ ​​you​ ​would think​ ​would​ ​change​ ​your​ ​life​ ​for​ ​the​ ​better,​ ​but​ ​in​ ​my​ ​case​ ​that​ ​is​ ​exactly​ ​what​ ​happened.

Scleroderma​ ​has​ ​exposed​ ​all​ ​of​ ​my​ ​insecurities​ ​and​ ​my​ ​weaknesses​ ​and​ ​forced​ ​me​ ​to​ ​face​ ​my mortality.​ ​Scleroderma​ ​has​ ​given​ ​me​ ​a​ ​new​ ​outlook​ ​on​ ​my​ ​life​ ​and​ ​taught​ ​me​ ​to​ ​savor​ ​the​ ​time and​ ​the​ ​people​ ​in​ ​my​ ​life​ ​ ​I​ ​love​ ​and​ ​care​ ​about​ ​and​ ​to​ ​live​ ​in​ ​the​ ​now.​ ​Although​ ​I​ ​am​ ​faced with​ ​obstacles​ ​daily​ ​that​ ​try​ ​to​ ​break​ ​my​ ​spirit, ​I​ ​will​ ​not​ ​let​ ​this​ ​disease​ ​dictate​ ​my​ ​life​ ​path​ ​and the​ ​stops​ ​I​ ​make​ ​on​ ​the​ ​way.​ ​I​ ​might​ ​have​ ​to​ ​take​ ​a​ ​few​ ​more​ ​stops​ ​than​ ​I​ ​would​ ​have​ ​liked to,​ ​but​ ​life​ ​is​ ​all​ ​about​ ​rolling​ ​with​ ​the​ ​punches​ ​and​ ​making​ ​the​ ​most​ ​out​ ​of​ ​the​ ​life​ ​you​ ​are​ ​given, and​ ​that​ ​is​ ​just​ ​what​ ​I​ ​intend​ ​to​ ​do​ ​– and​ ​a​ ​hell​ ​of​ ​a​ ​lot​ ​more!

We want to hear your story. Become a Mighty contributor here.


Find this story helpful? Share it with someone you care about.


Related to Scleroderma

woman's entire hand and wrist wrapped heavily with bandages

How NY State Laws Are Preventing Me From Getting Pain Medication for Scleroderma

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community. I​ ​have​ ​been​ ​living​ ​with​ ​a​ ​rare​ ​chronic​ ​autoimmune​ ​disease​ ​called​ ​systemic scleroderma​ ​for​ ​a​ ​little​ ​over​ ​16​ ​years​ ​now.​ ​Since​ ​my​ ​diagnosis​ ​in​ ​2001​ ​I​ ​have been​ [...]
bob saget

Bob Saget: Why I'm Using Comedy to Fight Scleroderma

Bob Saget is an acclaimed actor, comedian, director, writer and producer. Among many other television shows and movies, he wrote and directed the telefilm For Hope, chronicling his sister’s struggle with scleroderma. Bob joined the Scleroderma Research Foundation’s Board of Directors in 2002. We spoke to Bob on the red carpet of their 30th Annual [...]
woman smiling in a hospital gown with an IV in her neck

When I Was Forced to Face the Reality of Permanent Disability

“I do not want my picture taken in my wheelchair please!” were the first words out of my mouth as we started the Local Stepping Out for a Cure Scleroderma Walk a few weeks ago. I know it sounds extremely vain of me to not want a simple photograph snapped of me, but in my [...]
collage of photos of amy with friends and family

Looking Back on My Years With Scleroderma

This year I turned 35 years old! I cannot believe how the time has gone by. In the blink of an eye I’m now almost middle-aged. I am discovering gray hairs and my body doesn’t seem to want to work properly. To be honest, my body has never really been a model of health. When [...]