Personal stories, Positive Posts

Scleroderma Super Starz

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I was diagnosed with Systemic Scleroderma at the age of 19 years old. At that time I was a full-time Nursing Student in college and a Dietary supervisor working 60 hours a week at a local nursing facility, and loving every single minute of it. Being diagnosed with Scleroderma changed my whole life in the blink of an eye. All of my plans for the future came crashing down. I felt alone, scared and unsure of what was to come.

Being diagnosed with a rare, chronic, terminal disease at such a young age left me with a lot of questions. So I began searching for some sort of support group or site to help me learn more about the disease that was plaguing my life. Looking for help was a major feat in itself. Every site and group I came upon was geared for elderly, already established patients living with the disease. As a newly diagnosed young women I wanted to connect with other individuals within my age group who I could relate to in that aspect.

Fast forward about 16 years later. I was on Facebook and I came across the  Scleroderma Tri-State Facebook page.They had posted a message asking for comments about their support groups and the likes and dislikes about them. I reached out to Mary Beth (Director of patient education and support) with my idea. I wanted to create an online group that was geared towards teens and young adults living with Scleroderma. I thought back to when I was a young newly diagnosed teen and how alone and frustrated I felt that I didn’t have a group of my peers to connect with about this disease. It was important to me to establish a “safe haven” if you will, for people to come and speak their truth without feeling judged, inferior, or out-of-place. A few months later Scleroderma Super Starz was born. The goal of the group is to provide a safe judgement free environment for teens and young adults who are newly diagnosed or have already been living with the disease for some time. I want them to feel like they are apart of something, a family. The Super Starz is there to educate, facilitate, and support all members who need help.

At first the group was only going to be for diagnosed patients. But I thought about myself and how supportive my parents and close friends are. I still live at home and my parents are a big part of my daily life and they help me tremendously. I would not be here speaking to all of you today without their love and gentle encouragement. However they too are living with this disease, just in a different capacity. So I decided to allow the group to include caregivers, spouses, and loved ones who like my parents want desperately to be there and be a healthy support system.

Scleroderma Super Starz is a Facebook page that has been up since May of this year and I am very proud to say we have 594 members already! We are not only a national group of members from all over the US but we are also an International group, with members from Ireland, Australia, Africa, India, Spain, Brazil, Canada, Egypt, and even China! The group is still very new but we are doing very well. I wanted to not only be available for members to have support and connect with others but I also wanted the group to be an educational tool to help patients understand what they are living with and to help the,m to have a better quality of life and reach their goals and dreams. So I came up with some different ways to teach the members about the disease and help them in their daily lives too. On Sundays we do something called “SHOUT OUT Sundayz” which is a day for members to post positive stories or phrases about themselves or their loved ones. I try to feature a special story about one of our members each week. Mondays we do “Medical Mischief Mondayz” which the idea was given to me by one of our male members. He wanted to lighten the mood up a little and not always be so serious, so I started to post on Mondays a funny medical cartoon or meme or blooper to give everyone a laugh and lighten up the members spirits if they were having a bad day. Wednesdays we do “Tipz of the Trade”. Which I originally started for Scleroderma Awareness month in June. It was to help the members learn about special gadgets or helpful assisting tools to help them in their daily lives. For example like a gadget to open jars or to help you zip your pants or button your shirts. That took off like a firecracker every member loved the tips so much I started to do one every Wednesday and “Tipz of the Trade” was born. Thursdays we do “Healthy eatz”. This is basically healthy recipes for those members who are having gut issues and need to have healthier diets or just want to live a healthier lifestyle. Lastly on Saturdays we do a “Stay positive Saturday” where I post positive quotes and cute pictures to help members keep a good attitude even when it’s hard to do so. When this disease has so many negative effects on you mentally and physically. So I think it’s so important to stay positive.

The Scleroderma Super Starz is still new and I am learning as I go but I know we are helping a lot of young teens and adults live with this disease and letting them know that they are not alone in this fight. I have always felt like the youth is the future of this disease and so it is extremely important for them to have their voices heard. I like to think I am facilitating that through the Super Starz. If you would like to join just find us on Facebook we are the Scleroderma Super Starz or you can email me directly.

Please check us out! ” I know I say we are a group for teens and young adults, but we do have quite a few members who are “young at heart” or parents of young children who have joined. I am too much of a softy when it comes to people wanting to join that I can’t say no to anyone who wants or needs help, so you will not be turned away because of your age. I’m too nice to do that.” Scleroderma is such a personal disease in that it affects each individual differently and so each person goes through things emotionally, physically, and spiritually in different ways. But we still all are living with this unkind chronic illness and just because Scleroderma effects each of our bodies individually doesn’t mean we can’t fight the disease as a unit! Support is not pity and it doesn’t make you weak no one should ever have to fight alone. Let us have your back and fight with you.

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Blog Updates

UpDate after the 4th!!

 

Pictures from the Local Buffalo New York Scleroderma Walk 2017

 

Hi guys I hope you all had a very happy, and healthy Fourth of July. I spent mine with my parents and brother, his girlfriend, my Aunt and  her three dogs. Last time I updated you guys I was back from Pittsburgh and getting ready for our local Scleroderma Walk to raise money for a cure! The walk was a great success and a great time was had by all! 

I also spoke to you guys about my several doctors appointments and how they went and what was my next step regarding treatment. So after my routine trip to Pittsburgh the doctors decided I needed to see my GI doctor, which I haven’t seen in a few years to be honest. I really have not had any GI issues thus far in my disease, until now! My throat is definitely giving me some issues as far as swallowing and the esophagus itself feeling irritated after I drink or eat anything. So aside from having to make an appointment with my GI doctor. I was written a prescription for a Barium Swallow. Which is a basically an x-ray of the esophagus and stomach to see how well you swallow liquid and how long it takes to travel down your throat. I was also told to switch the way and times that I take a few of my medications because the didn’t like how low my blood pressure was getting.

So I went a week after the walk and did the Barium Swallow. The test is not the greatest most exciting test to do in the world. Frankly it is one of my least favorite test to do, only because of the nasty white chalk like substance you have to gulp down while standing, then laying on your stomach, your side, you back etc. so that they can take x-rays of your throat and how the liquid moves down your esophagus to your stomach. The Doctor that performed the test said everything looked ok but I had some irritation in my lower esophagus. 

Two days later I received an email from my doctor at my Rheumatologist Office confirming that my test went well everything looked ok considering I have Scleroderma. However I have an infection in my esophagus called Candida Esophagitis. Which in short means Adult Thrush in my throat! How could I have possibly gotten that? My doctor said it could be from a number of things and they weren’t sure what the cause definitely was at this point. Candida Esophagitis is usually caused from, steroid use, extended use of antibiotics, GERD, or extended use of immunosuppressant medications. I was told to take a prescription liquid medication that was called in for me to treat the infection and follow-up with my GI doctor at the end of the month at my appointment I made.

Now if that was enough of a set back. I received a letter from the Admissions Nurse at Northwestern Hospital in Chicago which in short told me that I can not come down at this time for my Stem Cell Transplant evaluation because the hospital is having an issue with their contract with Medicare based insurances. (which is what I have through BC/BS). She basically tells me I have to wait until they reach a decision with medicare. This whole process has been so frustrating for me just because now that I am finally doing well and able to go get my evaluation and hopefully a green light for transplant. I am now told I will have to wait until who knows when! 

My only choice is to try to stay positive and to keep moving forward. If this transplant is meant to happen it will eventually. On the brighter side of things. I have a speaking gig at Michigan State University coming up the end of this month, which I am really excited for. I will be on a panel with around 10 other Scleroderma patients at MSU to speak about our disease and living with it on a daily basis to the medical students at the College. We will be split up in to pair and put into rooms with around 25 students in each to have about an hour-long discussion and question and answer portion. I will be in to panel one in the morning and one after lunch. I am pumped to be able to participate in this awesome opportunity. Helping to educate others about my disease is really what I thrive for in life. If I am able to help just one person understand exactly what it means to live with Scleroderma day after day than I feel accomplished. 

My Scleroderma Support Group the Super Starz is coming along extremely well. I have over 350 members and I could not be more pleased on the response to the group. People are really liking the “Tipz of the Trade” portions we do on Wednesdays and the “Positive Saturdays”. My goal is to do a mouth stretching live tutorial and possibly a makeup application one as well. Ultimately I want to have a Q and A monthly for members to voice their concerns or speak openly about their issues in a safe healthy environment. We are getting there slowly but surely. 

The month of July is jam-packed for me and so I am really excited to be off and running with all of my new projects and opportunities. As far as Chicago I am totally bummed out about the standstill but I will remain positive and all I can do at this point is wait. Hopefully not too long of a wait. I will keep you guys in the loop and I hope you all are having a happy, safe nd healthy summer!! -A

Positive Posts

Standing up for Scleroderma Locally!

I find it so frustrating sometimes trying to make change for the better for those of us living with Scleroderma. We have a local support group and a local chapter, online groups, two of which I run myself and tons more, but are we making change? I really do not think so. I have been finding out that it is very difficult for people to accept new ideas and help and most definitely change. A group of us want to change how we are handling some of keys points of our Scleroderma Walk each year. The way we have been doing things is not working and has not been working for sometime now! So we pitched our ideas, which by the way are amazing and well thought out to the chair and their family ( they run the local walk here) and instantly we where shot down cold! Why are people so afraid of change? We have proven that our new way of doing things works. I feel it is a control issue. They do not want us to show we can do things better than they do because really all they do is basically nothing! Then take credit for others hard work and efforts. Our walk needs a face lift. We need a new prime location, more volunteers, a better plan for the day of the walk on how things are run, a chain of command set up and a leader for each department of the walk : raffle, food, advertisements etc. we need more people to attend the walk and we need itemize statements and the end of each walk with our spending and out total amount of earnings we also need a budget badly! What about all that sounds like a “waste of time”? What about wanting to know how much we spend each year and how much we make and where it all goes to each year is not productive? REALLY?
To be completely honest we have people in key positions in our local group who do not a single thing and offer nothing to benefit or uplift this chapter yet for some reason there they sit! Let us new young men and women who are ready and willing to help, step up and show you what we can do. The whole idea behind the walk is not only to raise money but to promote awareness for this awful disease and if we continue to not build up the walk we are doing a disservice to the men, women and children struggling each and everyday with this disease! Be a part of the solution not a road block standing in the way because of pride and your need to control everything. Our local chapter could be so much more than what it is and people are ready to put that plan into action. Why would you want to put a lid on the growth of this fantastic group and chapter when so much good could be done for the future of this disease. If you ask me that is just plain SELFISH and IGNORANT! Mark my words change is coming to Buffalo soon and we will not stand by and let our chapter be run into the ground. We will not be pushed aside and bullied! We will not stop moving toward our goal of a better more successful, Walk, Support Group, and Local Chapter. -A

Personal stories

New Out-Let on Life with Scleroderma

It’s​ ​a​ ​rainy​ ​windy​ ​muggy​ ​day​ ​here​ ​in​ ​Buffalo​ ​New​ ​York.​ ​A 
perfect​ ​day​ ​to​ ​write.​ ​I​ ​have​ ​always​ ​felt​ ​the​ ​gloomier​ ​the​ ​day 
the​ ​better​ ​the​ ​“writer​ ​juices​ ​“​ ​are​ ​for​ ​me.​ ​I​ ​have​ ​always​ ​loved 
to​ ​convey​ ​my​ ​thought​ ​onto​ ​paper.​ ​It​ ​is​ ​kind​ ​of​ ​like​ ​a​ ​release​ ​for 
me.​ ​I​ ​didn’t​ ​really​ ​start​ ​to​ ​get​ ​into​ ​writing​ ​and​ ​journaling 
intensely​ ​until​ ​I​ ​was​ ​diagnosed​ ​with​ ​Systemic​ ​Scleroderma​ ​16 
years​ ​ago​ ​when​ ​I​ ​was​ ​19​ ​years​ ​old.​ ​I​ ​was​ ​really​ ​having​ ​a​ ​rough 
time​ ​talking​ ​about​ ​my​ ​feelings​ ​to​ ​anyone.​ ​My​ ​doctors, 
friends,family,​ ​co-workers,​ ​all​ ​of​ ​the​ ​above.​ ​I​ ​think​ ​that 
actually​ ​saying​ ​the​ ​words​ ​“Scleroderma”​ ​made​ ​it​ ​so​ ​much​ ​more​ ​of 
a​ ​reality.​ ​So​ ​for​ ​the​ ​longest​ ​time​ ​I​ ​did​ ​not​ ​speak​ ​to​ ​anyone 
about​ ​how​ ​I​ ​was​ ​doing,​ ​or​ ​feeling,​ ​or​ ​coping,​ ​nothing!​ ​I​ ​basically 
told​ ​anyone​ ​who​ ​asked​ ​that​ ​‘I​ ​was​ ​fine”​ ​and​ ​quickly​ ​changed​ ​the 
subject.​ ​This​ ​behavior​ ​went​ ​on​ ​for​ ​almost​ ​3​ ​years​ ​and​ ​I​ ​knew​ ​I 
needed​ ​to​ ​find​ ​some​ ​kind​ ​of​ ​outlet​ ​for​ ​all​ ​of​ ​the​ ​stress​ ​and 
pressure​ ​and​ ​devastation​ ​of​ ​this​ ​disease​ ​that​ ​I​ ​was​ ​carrying 
around​ ​like​ ​a​ ​permanent​ ​backpack.​ ​Then​ ​one​ ​day​ ​and​ ​the 
Supermarket​ ​a​ ​complete​ ​stranger​ ​approached​ ​me​ ​in​ ​the​ ​freezer 
section.​ ​I​ ​was​ ​all​ ​alone​ ​basically​ ​sprinting​ ​up​ ​and​ ​down​ ​the​ ​aisles 
to​ ​get​ ​my​ ​frozen​ ​foods​ ​in​ ​my​ ​cart​ ​before​ ​my​ ​whole​ ​body​ ​went 
numb​ ​from​ ​the​ ​cold​ ​temperature.​ ​This​ ​strange​ ​women​ ​came 
right​ ​up​ ​to​ ​me​ ​and​ ​asked​ ​me​ ​if​ ​I​ ​dropped​ ​a​ ​hard​ ​cover​ ​journal​ ​in 
the​ ​next​ ​aisle​ ​over.​ ​I​ ​actually​ ​did​ ​a​ ​double​ ​take​ ​and​ ​replied 
“What?”​ ​she​ ​repeated​ ​her​ ​question​ ​and​ ​I​ ​laughed​ ​a​ ​little. 
Normally​ ​when​ ​complete​ ​strangers​ ​approach​ ​me​ ​it​ ​is​ ​to​ ​make​ ​rude 
completely​ ​judgemental​ ​comments​ ​about​ ​my​ ​appearance​ ​and​ ​why 
I​ ​look​ ​different.​ ​To​ ​have​ ​a​ ​stranger​ ​actually​ ​just​ ​come​ ​to​ ​me 
with​ ​a​ ​lidget​ ​question​ ​was​ ​so​ ​foreign​ ​to​ ​me,​ ​I​ ​honestly​ ​didn’t 
know​ ​what​ ​to​ ​say​ ​at​ ​first.​ ​After​ ​3​ ​seconds​ ​or​ ​so​ ​I​ ​got​ ​a​ ​grip 
and​ ​politely​ ​answered​ ​her​ ​with​ ​a​ ​“​ ​NO,​ ​I​ ​did​ ​not.”​ ​and​ ​she​ ​smiled 
and​ ​continued​ ​on​ ​her​ ​way​ ​with​ ​her​ ​cart.​ ​It​ ​wasn’t​ ​until​ ​I​ ​was 
checking​ ​out​ ​at​ ​the​ ​cashier​ ​that​ ​I​ ​noticed​ ​that​ ​the​ ​women​ ​had 
placed​ ​the​ ​journal​ ​inside​ ​my​ ​cart​ ​and​ ​the​ ​cashier​ ​was​ ​now​ ​ringing 
it​ ​out​ ​as​ ​my​ ​purchase.​ ​I​ ​can’t​ ​say​ ​why​ ​but​ ​I​ ​allowed​ ​the​ ​cashier 
to​ ​scan​ ​the​ ​journal​ ​and​ ​place​ ​it​ ​into​ ​my​ ​grocery​ ​bag​ ​and​ ​then 
into​ ​my​ ​cart.​ ​I​ ​paid​ ​her,​ ​thanked​ ​her​ ​gathered​ ​my​ ​stuff​ ​and 
started​ ​to​ ​wheel​ ​my​ ​cart​ ​to​ ​my​ ​car.​ ​On​ ​my​ ​ride​ ​home​ ​with​ ​my 
groceries​ ​I​ ​continued​ ​to​ ​try​ ​to​ ​understand​ ​why​ ​I​ ​allowed​ ​myself 
to​ ​pay​ ​for​ ​the​ ​unclaimed​ ​blank​ ​journal​ ​and​ ​didn’t​ ​just​ ​tell​ ​the 
cashier​ ​to​ ​take​ ​it​ ​off​ ​of​ ​my​ ​bill.​ ​I​ ​could​ ​not​ ​for​ ​the​ ​life​ ​of​ ​me 
find​ ​a​ ​reasonable​ ​answer.  
Later​ ​that​ ​evening​ ​I​ ​pulled​ ​the​ ​blank​ ​journal​ ​out​ ​and​ ​opened​ ​it 
up​ ​and​ ​started​ ​to​ ​leaf​ ​through​ ​the​ ​blank​ ​pages.​ ​It​ ​was​ ​as​ ​if​ ​a 
switch​ ​just​ ​went​ ​off​ ​in​ ​my​ ​body​ ​and​ ​my​ ​mind.​ ​I​ ​grabbed​ ​a​ ​pen 
and​ ​just​ ​started​ ​to​ ​write.​ ​I​ ​could​ ​not​ ​tell​ ​you​ ​for​ ​the​ ​life​ ​of 
me​ ​what​ ​I​ ​actually​ ​wrote​ ​down​ ​but​ ​it​ ​felt​ ​so​ ​freeing​ ​I 
continued​ ​to​ ​write​ ​for​ ​quite​ ​some​ ​time,​ ​and​ ​after​ ​that​ ​night​ ​I 
never​ ​stopped.​ ​I​ ​had​ ​finally​ ​found​ ​an​ ​outlet​ ​for​ ​all​ ​of​ ​my​ ​worry 
and​ ​stress.​ ​A​ ​way​ ​to​ ​purge​ ​all​ ​of​ ​my​ ​fears​ ​and​ ​my​ ​anger​ ​freely. 
I​ ​can​ ​honestly​ ​say​ ​that​ ​writing​ ​has​ ​actually​ ​helped​ ​me​ ​live​ ​my 
life​ ​with​ ​a​ ​more​ ​complete​ ​and​ ​positive​ ​outlook.​ ​Writing​ ​has​ ​even 
helped​ ​me​ ​to​ ​be​ ​able​ ​to​ ​speak​ ​openly​ ​and​ ​honestly​ ​to​ ​anyone 
about​ ​my​ ​illness,​ ​my​ ​struggles,​ ​my​ ​outlook​ ​and​ ​my​ ​goals.​ ​Being 
able​ ​to​ ​do​ ​that​ ​has​ ​lead​ ​me​ ​to​ ​becoming​ ​a​ ​Support​ ​Group​ ​leader 
for​ ​Scleroderma​ ​patients​ ​and​ ​their​ ​loved​ ​ones​ ​and​ ​has​ ​allowed​ ​me 
to​ ​start​ ​up​ ​and​ ​successfully​ ​maintain​ ​a​ ​blog,​ ​and​ ​a​ ​personal 
Scleroderma​ ​educational​ ​page.  
So​ ​on​ ​a​ ​gloomy​ ​rainy​ ​day​ ​like​ ​today​ ​I​ ​will​ ​pull​ ​out​ ​my​ ​laptop​ ​and 
just​ ​“let​ ​go”​ ​for​ ​awhile.​ ​What​ ​developes​ ​onto​ ​that​ ​screen​ ​I​ ​will 
almost​ ​always​ ​share.​ ​In​ ​the​ ​end​ ​it​ ​helps​ ​me​ ​to​ ​life​ ​and​ ​hopefully 
in​ ​turn​ ​it​ ​might​ ​manage​ ​to​ ​help​ ​someone​ ​else​ ​find​ ​their​ ​out​ ​let 
of​ ​release​ ​in​ ​whatever​ ​form​ ​that​ ​comes. 
Personal stories

Why a Strong Support System is crucial when living with a Chronic Illness

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My Niece and I were hanging out the other day and we went shopping for rings for an event she and I were attending over that weekend. As we mulled over gold, silver, gemstones, and rose gold rings. She casually asked me why my fingers were so much shorter than hers, and why most of my fingers were missing the fingernail all together. Inwardly I cringed, my hands and fingers have always been a sensitive subject for me to discuss. Mostly because I’m embarrassed by them and I feel very insecure and inadequate whenever someone looks at them or they are mentioned, but this was my 12-year-old niece asking me, with nothing but concern and empathy in her eyes. I never want her or anyone I love for that matter to feel like they can not come to me and ask me questions about my body or my scars, my surgeries, or my doctors appointments. To me the more I open myself up and share my experiences, the more familiar the disease Scleroderma becomes. I mean lets face it maybe 1 out of 25 people know exactly what Scleroderma is and that needs to change drastically. So I took a deep breath and started to tell my beautiful niece all about why her Aunt’s hands were nail less and crooked. When I was first diagnosed with Scleroderma my hands looked perfectly normal. Long slim fingers with short round nails which I even sometimes polished. As my disease progressed, I started to get really painful, quite large sores under my nail beds and on the tips of my fingers. I quickly found out that the sores were called Digital Ulcers and that they were fairly common in people who were diagnosed with Scleroderma. Scleroderma causes your skin to become very tight and hard. This can lead to pressure wounds on your extremities also known as Digital Ulcers. Scleroderma can also make it very hard for the person living with the disease to heal, because the skin becomes so tight it prevents proper blood flow through out the body. In order for the body to heal its self the blood needs to clot. Scleroderma make clotting next to impossible as well as make the wound extremely painful and can cause serious infections and slow down the healing process. Making a simple cut which normally takes a few days to a week at the most to heal, take months to even a year or more to completely heal. For some reason I tended to get  Digital Ulcers quite frequently and they indeed were extremely painful and took forever to heal. Some of them became infected and the tips of my fingers would turn black and gangrenous from the skin dying, It was awful. The wounds keep coming one after another after another. I tried everything to help prevent them from developing but nothing seemed to work. Medication after medication, dozens of different creams, I even changed my diet and gave up all caffeine. Nothing seemed to do the trick. In 2005, Five years after I was diagnosed with Scleroderma, I developed a sever ulcer on my ring finger. It became gangrenous almost immediately. Due to the severity of the wound I had to go see a Plastic Surgeon to see if debridement of the wound was an option, which means that the doctor would numb the finger and remove all of the necrotic, dead skin to help the wound to start to heal. The first Plastic Surgeon I went to told me I needed to amputate my finger to below the knuckle! Hearing that made me feel completely heartbroken. I did not want to lose a finger. As it was, due to the numerous Digital Ulcers I continued to get most of my fingers were half the size of a normal persons fingers and were missing their fingernails.  Removing my finger was not an option in my eyes, so I saw another doctor this time a Hand Surgeon. He recommended a brand new procedure that he himself had only preformed on three other patients living with Scleroderma. The procedure was a surgical procedure that would re-route some of the veins inside my hand to help increase blood flow to all of the fingers and in turn would help with wound healing among other things. This sounded 100 % better than cutting off one of my fingers, but surgery is a very big deal and this type of operation had only been preformed three times. To say I was nervous was an understatement. On the day of the surgery I was a so nervous! What if they mess something up and I lose not just my finger but my whole hand? What if I don’t wake up? What if the surgery doesn’t work and I end up having to amputate my finger anyway? I relayed all of my concerns to my doctor as they started to numb up my arm for surgery. He looked me right in the eyes and said ” I am hand surgeon.” ” I will do everything I possibly can to save your finger.” ” I am not in the business of removing fingers, I’m in the business of saving fingers!” With that I was sedated and the next thing I remember I was waking up in the recovery room vomiting from the anesthesia. The surgery turned out to be a great success. They removed all of the gangrenous skin from my finger after the operation and because of the hand surgery I was able to save my finger and the nail. This surgery was so successful for me I ended up having my other hand done about 7 years later. However the surgery did not completely cure me from getting Digital Ulcers. I do still get them but the sores are not nearly as sever as they used to be and I do not get them quite so frequently, to me that is a success. After I finished telling my niece this story she looked at me with tears and loving in her big brown eyes. A part of me debated if I told her too much at too young of an age, but then she surprised me by giving me a big, warm hug and whispering in my ear ” Aunt Amy, your hands are beautiful to me and I am proud of you for being so brave!’ Those words coming from a 12 year old girl meant more to me that I could ever express into words. So anytime I am feeling down or insecure about my body or depressed about how my life has changed since being diagnosed with this awful disease. I just think back to my niece and her kind words of love, and I realize no matter what happens in my life, I will never give up. I will fight and I will win. I have the strength and if I need a little more I have the most amazing family and friends to help me shoulder the load. Living with Scleroderma is painful, depressing, difficult, and exhausting just to name a few, but as long as I have my amazing family and friends around to rally with me I can get through anything.

Late night ramblings :)

A dream is a wish ur heart makes…

 

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At this moment in time I feel stuck! Stuck in my life. Stuck in my relationships, Stuck in my illness…. STUCK! I have always thought that I got sick for a reason. I have been going though life for years now trying to figure out what that reason is. What is my purpose in life? What am I meant to be doing? How am I going to leave my mark on this World? I ask myself these same questions everyday since I was diagnosed 16 years ago and still I haven’t got the faintest idea. I want to help my fellow Sclero Siblings and get the word out about this disease. I want to try to help other people who like me had no idea what to do when they first got diagnosed with Scleroderma and are scared and confused and feel alone!. I went though all of that and at times I still do go through rough patches where I feel alone and scared. I am trying to pay it forward so to speak by having this blog and my Facebook page and getting my story out there. But I feel like I could be doing so much more! I have been hitting a ton of road blocks when it comes to getting my story published or any of my articles for that matter. I guess I am not as good of a writer as I thought or people just are really not interested in hearing about my life and my struggles with Scleroderma. Either way I feel like I am failing. I have had this dream since I first was told I had Scleroderma to open up a Scleroderma and Auto-Immune Support Center. A place where people can come help. if you need emotional support or to talk to someone or help finding a doctor in your area we could do that for you. If you need help with insurance or medicare, food stamps etc. that is something we can help with too! I wanted it to be a center for support on all levels not just emotional! A one stop shop to help the lives of those battling with Scleroderma or a kind of Auto-Immune disease. I know it sounds a little far-fetched but if you really stop and think about it. A center like that would be amazing and it would help so many people! Maybe I am just dreaming?  Maybe I need to take a step back and reevaluate my life? Maybe I am not supposed to be doing what I am trying to do? Maybe I need to let it go and just move forward? I really just have no clue. Like I said i am STUCK in my life!

Personal stories

“Medical Vacation”

Sorry my friends for not posting in quite a few days now. My grandmother recently passed away and I have been finding it extremely difficult to find inspiration in the form of words. What I can tell you is that my “medical vacation” to Pittsburgh turned out to be a bit of a shit storm, if I’m being polite.

My skin score was one point lower than it was when I was there in November. 

  • A skin score is basically a test the Doctor performs on you each visit to rate the thickness of your skin in different areas of your body. Re: arms, legs, neck, face, mouth, fingers, ankles etc.. This is usually done by a simple clinical examination technique called the MODIFIED RODNAN SKIN SCORE: So what the Doc. does is actually pinch your skin all over in each of said areas and then rate it according to this number scale they go by. #1 being the least amount of thickness and #10 being the most amount of thickness. Then the numbers from each section of the body are tallied up. The final number is sort of like a number gauge to tell your Doctor how thick your skin is. They do this test each appointment so they can better determine if your disease is progressing or regressing.

My skin score last time was quite higher than most of my previous visits. In fact it was the highest it has ever been. (24) Mostly all of my other scores have been 16 or below. So you can imagine I was a tad concerned. This past score came out to be (23) which isn’t really great unless it jumps like 3-4 points the skin has pretty much stayed the same. It hasn’t gotten any worse so that was a plus. So the Doctor that treats my Scleroderma (Rheumatologistsuggested we try a few new medications. You guys know I was on the Methotrexate shots for about 6 months well it was clear that was not helping so we ditched that and I am going back to a drug I tried several years ago but I didn’t get a real go of it back then. Cellcept, which is an Immunosuppressive drug. Last time I took Cellcept I kept on developing ulcerated sores on my fingers and needed to stop the medicine. When you are on an Immunosuppressive drug if you geta cold or have to go on antibiotics you have to stop taking that medicine for sometime because it counteracts the antibiotics and will hinder your recovery time. then there was the issues I was having with my feet.
For about 3 year or so I have started to get Neuropathy in my left foot. It wasn’t that sever to start so my Foot Doctor (Podiatrist) would keep a close eye on it and he has me have a test called Electromyogram Test (EMG). The test came back “normal” which was a good thing. 
  • Immunosuppressive drugs are medications that inhibit or prevent activity of the immune system. (they hinder the body’s ability to fight off germs)
  • Electromyogram (EMG) is a test that is used to record the electrical activity of muscles. When muscles are active, they produce an electrical current. This current is usually proportional to the level of the muscle activity. EMGs can be used to detect abnormal electrical activity of muscle that can occur in many diseases and conditions, including muscular dystrophy, inflammation of muscles, pinched nerves, peripheral nerve damage (damage to nerves in the arms and legs)
  •  Neuropathy is a term that refers to general diseases or malfunctions of the nerves. Nerves at any location in the body can be damaged from injury or disease. For example Neuropathy of the brain is called Cranial Neuropathy. Optic Neuropathy affects the eye. Focal neuropathy: Focal neuropathy is neuropathy that is restricted to one nerve or group of nerves, or one area of the body. Which pertains to myself and my feet. Neuropathy is in a nut shell is weakness, numbness and pain caused by the nerves.
About a year or so ago I started to get the nerve pain in both of my feet. To describe the kind of pain in words is kind of tricky. I have had nerve pain before, from ulcerated sores that I have had on my fingers, toes and elbows. If you have ever had an ulcerated sore then you know exactly what type of pain i am referring to and what it feels like. It is a different kind of pain than a cut, or a broken bone, or even a surgical wound. The best way for me to describe it is .. Ok Everyone I am sure has sure has burned their fingers on something hot like an iron, or a hot pan before. Ok so remember the initial jolt of pain you got from touching something hot, and how it sort of zings up your finger and feels like an electric shock. Picture that kind of pain but on the bottom, top and both sides of your right and left foot. Off and on all day and night long. It doesn’t stop or subside, it is a constant burning pain and every so often you get a zing like an electric shock shooting up your foot to your leg. Then on top of all that your feet swell and throb and you can’t stand to even have your sock rub up against it because it even that causes horrible pain. Oh and Advil or even Loratabs ain’t gonna cut it.  
So there’s the skin and the pain in my feet, lets bring on the shortness of breath shall we?
My chest has been feeling like I can not get a decent breath in when I am in bed at night laying down. I have had this for sometime so that is nothing new. I have Pulmonary Fibrosis so breathing complications are kinda the norm. That’s why before I see my Lung Doctor (Pulmonologists) every 3-4 months. I have Pulmonary Functions Test (PFT) taken.
  • Pulmonary fibrosis is a disease marked by scarring in the lungs. Tissue deep in the lungs becomes thick, stiff and scarred. The scarring is called fibrosis. As the lung tissue becomes scarred, it interferes with a person’s ability to breathe.
  • Pulmonary function tests (PFT) are a broad range of tests that measure how well the lungs take in and exhale air and how efficiently they transfer oxygen into the blood. 
  • Acid Reflux or Gastroesophageal reflux disease ( GERD) is a chronic disease that occurs when stomach acid or bile flows into the food pipe and irritates the lining. Acid reflux and heartburn more than twice a week may indicate GERD.
    Symptoms include burning pain in the chest that usually occurs after eating and worsens when lying down.
    Relief from lifestyle changes and over-the-counter medications is usually temporary. Stronger medication may be needed
My breathing tests have been pretty stable for the past year or so. Meaning they haven’t really had a significant increase or decrease. I just all of a sudden started to have a hard time breathing when I would turn from one side to the next in bed. My doctor said that it’s not uncommon in people with pulmonary fibrosis to feel shortness of breath at rest, or laying flat. I knew this and I have my head of my bed raised some for my acid reflux issues. He advised me to try a wedge pillow at night to give my head a lighter more height. So I ordered one on amazon ($129.00) WTH and it is on its way.
Over all my trip was productive, it wasn’t the ” Oh you’re doing great, keep up the good work!” trip I had hoped for. But I really wasn’t expecting to have a visit that went smoothly. Living with this disease you learn to not expect or hope for too much because you will most definitely get let down a lot if you do. Don’t get me wrong a positive attitude is definietly a major factor in having the best life you can. I just think being realistic is also a key to having productive and successful treatment. With Scleroderma everyday is something new, so it’s never boring. I am going to give my new treatment plan a go and I see the “crew” in May to evaluate my progress. fingers cross my friends-A
Blog Updates

Expanding and Educating


I am so very proud and excited to tell all of you that the Support group that I created on Facebook called The Scleroderma Super Starz is expanding! Not only do we have over 600 members Nationally as well as InterNationally, we are now Officially on Instagram! 

I can’t believe how quickly this group has taken off and grown. The Super Starz was officially launched in May and here it is September and we are already taking it to the next level! I could not be any prouder of the group and all of my wonderful, fierce, members. We are like one BIG family and that is exactly what I was striving for when I originally thought of putting a Young Adult and Teenage members Support Group. 

I’d just like to say THANK YOU to all of my Super Starz family for trusting me with your brave stories and for having the strength to fight this disease. Scleroderma can be so overwhelming at times and I can’t even put into words how inspiring all of you are and how much you have truly helped me in my journey with a Scleroderma! So from the bottom of my heart THANK YOU! I would also like to thank Tri State Chapter and most importantly MaryBeth (you know who you are!) for all of her support and encouragement and HELP, in taking the Super Starz from just a Pipe dream to reality! You are an amazing person and I have learned so much from you. THANK YOU!

So all of you Scleroderma survivors out there who would like to join our fantastic group you can find us on Facebook and now Instagram. Just type in Scleroderma Super Starz!!! Please check us out like us, follow us, and join us! Let the Super Starz family help you fight Scleroderma no one should have to feel like they are alone. Let us have your back!!!

-Amy

Uncategorized

Scleroderma Fundraising TEAM

Hi guys! Really quickly myself and a good friend of mine have started a Fundraising Team locally in Buffalo NY. Saturday August 26,2017 we will be having an “Open” meeting for anyone interested in finding out more about our Team and what we are all about! Please come out and see us. The meeting will be held at Master’s Pizza on William Street in Cheektowaga. Fundraising and Awareness is SO important and we need all the help we can get to get this team on the ground for success! I hope to see you there! -A

Personal stories

Finally a positive outcome!

I’m very happy to say that I am officially now a candidate for a Stem Cell Transplant at Northwestern University Hospital in Chicago! I got the go-ahead from my insurance company a week ago to move forward with my evaluation. Finally a step in the right direction treatment wise. I have been literally riding a roller coaster for over 4 years trying to get approved for this transplant treatment. I originally went to be evaluated in North Carolina at DUKE University Hospital about 4 years ago. At that point in my disease my lungs were getting worse. I was on oxygen occasionally at bedtime and my skin score was slowly getting worse. My doctor recommended DUKE and before long I was down there undergoing a boatload of tests, procedures, and consultations to see if I would be eligible for Transplantation. A whole week of back to back tests. “It was so much FUN!” Not!

A month later we returned for my results which for the most part were right in line with their protocols, or so I thought! The only concern they voiced to me was my lung function specifically the DLCO was a little too low for their liking so I was put on a 6 month treatment plan of infusions once a month with a drug called Cytoxin. Cytoxin is a drug that they normally use for cancer patients but with Scleroderma it is supposed to help lung function and in some cases Scleroderma skin involvement. I had done 8 treatments of Cytoxin prior to arriving at DUKE, about 6 years before and it did not really change anything. But I thought “what the hell, let’s give it a go!” So back to Buffalo I went for 6 months of Cytoxin infusion. Which by the way was horrible, in every sense of the word! The treatment its self makes you nauseous, sick to your stomach, vomit, and exhausted, and that is just the day of treatment. It also makes your hair thin and start to fallout, and it gave me horrible migraines. But I battled it out because I wanted /needed that Stem Cell Transplant so bad! About 4 months into my treatments I revisited DUKE for a follow up and to get a breathing test (Pulmonary Function Test) to see if the Cytoxin was at all doing its job. It wasn’t! As a matter of fact even though these last 4 months I was told by their staff I was doing well and the Cytoxin was successful, apparently my lung function was worse off that it was when I started the treatments! At that point I was blindsided because I was under the impression that I was doing well and was very close to being accepted for transplant. However I guess that wasn’t the case according to my Pulmonary function test and the fact that the Doctor came in and straight up told me I was not a candidate for Stem Cell Transplant and I would not be treated by them any more. Shock was the first emotion to run through my body. The next was anger! How could I not be a candidate? I was told for almost 2 year that everything was moving forward and that I had the green light! I felt lied to and completely taken advantage of. Oh and I was told I had heart issues that didn’t fit the protocol which was never mentioned to me once the whole year and a half I was treated by them! 

Fast forward a year later I found another hospital that was preforming Stem Cell Transplants for Scleroderma patients and I wanted in! I found NorthWestren University Hospital in Chicago Illinois and I immediately sent them an email about my situation and what I went through at DUKE. They responded within two days asking me to come down for an evaluation. “YES!” I of course was kind of bummed they wanted me to repeat ALL of the tests I originally had done in North Carolina because it was only a year ago but I guess I had to do what I needed to do. I was in the process of making plans to go to Chicago for my evaluation when out of nowhere I started to have these weird episodes, where my vision would go blurry. I would have ringing in my ears, my tongue would go numb along with my lips and my heart would race! Eventually it would go away but I had a total of 3 of those episodes and each time they lasted long and longer. Until one evening when I returned from dinner with my parents. All of a sudden I started to have the same symptoms but then my heart just started to pound and I felt like I couldn’t breath and if I sat up I felt dizzy. I ended up in the ER and was diagnosed with Atrial Fibulation. I was put on heart medication and released the next day. So now I needed a Cardiologist. After having three more of these ER trips in the time span of over a month my Cardiologist decided I needed to do something more than medication because they problem wasn’t getting fixed. I then saw a heart specialist in Pittsburgh who told me I needed a Cardiac ablation. A Cardiac ablation is a procedure that is used to scar small areas in your heart that may be involved in your heart rhythm problems. This can prevent the abnormal electrical signals or rhythms from moving through the heart. At that point I had to make the decision to post pone Chicago and my Transplant evaluation. 

Fast forward another two years and two Cardiac Ablations later. My heart is stable and doing well as are my lungs. I found a medication for my lungs that seems to be helping and it’s a infusion once a year. However my skin score is not getting any better it seems to be getting worse and despite my lung tests showing stability I’m having trouble with my breathing and sleeping. basically my Scleroderma was still active and progressing. I needed a solution to level things off and stabilize my disease. At that point I decided Chicago was my only option and I contacted them in hopes they would remember me and agree to help me again. Luck was on my side and they did in fact remember me and were willing to have me back for evaluation just like that! “Wow!, it was almost too easy right?” Two weeks after I got the go ahead from Chicago to start making my arrangements to come down I received an email from the Charge Nurse stating that the Hospital was having an issue with my insurance and they did not know when the issue would be resolved. In other words I was being put on hold until they fixed this insurance issue! Derailed once again, to say I was upset would be putting it lightly! 

I really could not do anything but sit and wait. So I moved forward with my life and just kept my fingers crossed that it would work its self out. 2 months later I received another email from the Charge Nurse stating that everything was a GO! I couldn’t believe my eyes. I actually read and reread the email five times to be sure. Finally after all this time I was getting the opportunity to be evaluated and hopefully a chance at a Life saving procedure that can possibly put my disease into remission and give me a better quality of life. I’m so over joyed. I know I still have a long way to go before I’m actually told “yes” I can receive a transplant but I am just so happy I have made it this far. 

For 16 years Scleroderma has taken charge of my life and steered me in the direction and to the places it wanted me to go. It has dictated where I go, when I go, with whom I go with and actually if I even get to go. Having the opportunity to get this Stem Cell Transplant I finally feel like I can be the driver in my life and Scleroderma will not get to tell me where to go or how to live anymore. Do not get me wrong I know this is not a cure and the damage that Scleroderma has done will remain but if I get the chance to be in remission and possibly not get any more sick than I am now, I would gladly take that option in a heart beat. Now I can only wait for my appointments in November and keep my fingers crossed that this time I don’t get that awful word “NO!” Like I got 4 years ago. Hearing “YES!” Would be the best day of my life! 

Personal stories

Why I feel 🍀 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!

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