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Why I Feel Lucky Despite My Battle With Scleroderma

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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!

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Originally published: July 20, 2017
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