Happy America day!!

Happy 4th of July!! Wow! How fast the Summer months are flying!

In a few weeks we will be seeing one another at the Scleroderma National Patient Education Conference in Chicago!! I’m excited to say I am speaking at the Advocacy Workshop with a few other amazing Sclero peeps! Then I am headed to Washington DC in September to lobby for the HR 3446 Bill with the Scleroderma National Foundation and a group of amazing advocates and caregivers including my dad!!

BIG THINGS ARE COMING!! I encourage all of my Super Starz to get out there enjoy the hot weather! ( stay shaded and hydrated!) and live your life. Cherish the good days and fight through the bad ones. I am so grateful to have this group and to be able to put to light our truths and I am honored to be where I am in life today.

Please take a moment to praise and remember how lucky we ALL ARE TO HAVE Our FREEDOM! And how greatly a cost it was to so many to live like we are! Happy America day!! Enjoy your loved ones and have a great Holiday!!💙❤️🇺🇸

18 Months of June and the wonder of it all!

As we enter the second week of June I can’t help but wonder how is it that I have seen 18 “June months” while living with Systemic Scleroderma? For those of you who are not familiar; June is Scleroderma Awareness Month. A entire month dedicated to spreading awareness, education, and support for patients, caregivers, medical professionals, family and friends. I feel honored to have been able to see 18 Scleroderma Awareness Months in my lifetime thus far, but I always tend to think of the less fortunate individuals who have lost their battle with this complicated and debilitating disease. Why have I been so lucky to have witnessed 18 Awareness months in June and so many others have maybe not even seen one? What makes me so special or so different/lucky? Then there is also the question of do I deserve the 18 months of June and what am I doing to honor that gift?

I was diagnosed like I said 18 years ago with Systemic Scleroderma, in 2001 to be exact. Scleroderma is a fairly rare autoimmune disease that effects the skin, muscles, joints, blood vessels, and connective tissues in the body by thickening and stiffening them. It can also cause thickening and stiffness in the major organs like the heart, lungs, kidneys. It is a disease with an unknown origin and no known cure thus far. ( fingers crossed)

Living the past 18 years with Scleroderma and all of the life debilitating complications that come with it. I have learned that being a professional patient must come first in my life but it isn’t necessarily the only part of my life. I needed to have a full life and to be able to feel like I wasn’t just someone living to die. So I came up with a list, not so much a bucket list but a “living wish list” of all of the things I wanted to accomplish while living with Scleroderma not in spite of. With that list intact I set off to start my journey of living with Scleroderma and making my days important to me, in my own way. Slowly but surely I began to check things off of my wish list and each time I did I added one or two more items. Then at the end of each year I would take a look at said list and see all of my accomplishments and think about all of the goals I still had on my list left to be completed. It wasn’t until two years ago that I started to think about why I was doing these things and what my list really meant in the grand scheme of things.

I had started an online support group with the help and support of the Scleroderma foundation, called the Scleroderma Super Starz. I started the group because I wanted a place where young adults and teens living with Scleroderma could go to feel safe to ask questions, vent off stress, find support and meet other like individuals. The group really took off and after only a few months I had over 1000 members from all over the world. I started to realize that the group was a much needed outlet for the youth living with scleroderma and that there could be other ways to help reach the younger community and evoke change. So I started to go to colleges and health fairs and speak about my journey living with scleroderma as a young teen and how it impacted my life and how the younger generation of this community needs to have a voice. Along the way i started to meet all of these really amazing men and women and children living with Scleroderma. Some were quite sick and others not so much. Some needed oxygen to breath or needed a wheelchair to get around like me. Others could jog and climb stairs and do yoga. We were all very different but inside the same dealing with this disabling disease that has crippled our lives and shirt sheeted our dreams.

Friendships were formed quickly but the bound was definitely strong. We were part of a special club that required you to have a rare autoimmune disease to be a member for life. I was really glad to have met and befriended so many fellow fighters like myself. It helps to have someone to reach out to when your having a hard day or a stubborn symptom that won’t quit. I found it reassuring to be able to reach out to my tribe and vent or receive advice for problems no one else really has but us. Everything seemed great my support group took off with 2500 members after only 2 years. My speaking engagements were becoming a constant and reoccurring opportunity and i was seeing change in my life and in the scleroderma community as a whole, change for the greater good and that made me feel accomplished and proud.

Then like the shock of cold water to the face reality hit; we are all pretty sick humans and even though some us look relatively healthy we are not and the treatment out there is quite limited and not a cure all. I found this dose of reality when I started to lose friends to scleroderma. One after another after another, I would hear of beautiful people i knew losing their battle with this disease. Life as I knew it was turning around from pleasantly wonderful to utterly unfair and tragic. When you lose a close friend or even a family member its difficult and lonely and very sad. I was finding that losing someone to the same exact disease I had myself was something totally different. It was numbing and consuming and scary but also I was feeling horrified because I felt a smidgen of relief that i was still here, and then felt a wave of guilt for still being here when they are not. How can you get past feeling guilty for being alive and feeling relief that you are still here? These were brand new emotions for me and I didn’t know where to put them at all. I still find it hard to sort though those kinds of emotions.

So when June rolls around each year and I am by some grace from above still on this earth I feel grief for the loss of so many of my fellow fighters who aren’t here to see our community thrive and fight for awareness, and promote education, and fill the internet and social media with our stories and our triumphs and our struggles. I feel grief that we have come so far but are still losing people to this disease and have no cure in our sights, but I also feel honored to be able to share my story with the world in the month of June, and to speak about my friends who we have lost in remembrance of their struggles and ultimate sacrifice. June is a moth of awareness for Scleroderma a month to celebrate living another year with a disease that for now is incurable but it is also a month to remember all of the amazing, beautiful people scleroderma has claimed and to maybe not feel guilty to still be here because I am here to honor those who aren’t and to tell my story to help others and to spread awareness and educate people so that one day June will be nit just an awareness month but a month of finding a cure. 18 months of June and counting, I hope I get to see that day where a cure is found in my life time.

Scleroderma isn’t easy but it’s my life! -A💙

Why is Collaborative Patient care is a MUST in Chronic Illnesses?

Overall living with a Rare, Chronic Auto-Immune Disease has been a mash-up of hot and cold emotions, physical highs and lows, and an eye-opening educational experience for me and my support system. There have been times where I have felt completely alone and scared of my future and how my health was going to look moving forward, but there has also been moments where I have felt so strong and capable that with the help of my physicians and caregivers I was able to make educated, decisive, critical decisions in terms of my health and my medical treatment. I really think that if your living with a chronic Auto-Immune Disease, especially if it is rare and does not have a cure like mine. That you need to concentrate on your disease as a whole. If you want any kind of improvement in your health, preventive care is essential. In order to have the correct and most complete care, I believe a Cohesive Collaborative Team of Healthcare Professionals is the best way to achieve that concept of “whole body and total disease care.”                                                                                                                                                        Normally if you are sick you go to 1 doctor, usually your General Practitioner. He examines you and listens to you describe your symptoms and then prescribes what he thinks is the best course of treatment for your aliment. In the world of Chronic Auto-Immune illness that is not how it works at all. Auto-Immune diseases make your own body fight against itself. Therefore when you have symptoms that are bothering you it tends to be more than one problem going on and in most cases more than one body part is affected. So going to just a General doctor for treatment is not going to cut it. You need a Specific Specialist for each part of your body that is having active symptoms. Typically that means 2 or more trips to visit several different Specialty doctors.                                     I learned very quickly that because I have around a dozen different doctors that treated different bodily problems for my Chronic autoimmune disease that these doctors needed to at the very least communicate through email about my treatment as a whole. They needed to be on the same page and be informed about each others medical advisement when it came to my treatment. Otherwise what was the point of treating me if everything wasn’t cohesive and communicated to all of my Specialty doctors. I also realized that having the best doctors in the Country didn’t mean squat if they weren’t willing to communicate with all of my other care providers and come together as a united front to treat my disease completely and collectively.                                                         The first 6 years of treatment for my Chronic Auto-Immune disease was a train wreck. I had brilliant well qualified doctors don’t get me wrong but my care was lacking that “whole body total disease” concept. Making my treatment process unorganized and incomplete in my opinion. Eventually I had endured enough! I had a serious “family meeting” with my support system and we came to the conclusion that the care I was receiving for the past 6 years or so, was not cutting it. I needed a change in a big way!           It took me quite awhile to find a Hospital with Doctors that not only accepted my insurance but also practiced the concept of Cohesive Care, but eventually I did and my medical care has been on point ever since.                                                                                          Last year I was approached by the Steffens Foundation and Russell Sage College to participate as a Patient Adviser on a medical Panel as well as a Keynote speaker, and an interviewees for an event they were putting together to promote InterProfessional Education amongst medical professional (students). I jumped at the chance to share my experiences from a patient’s perspective when it came to Collaborative, Cohesive Care. The event was a huge success and really opened a lot of eyes in regards to new ways to treat illnesses completely as a team effort. I was shocked to see how many people were in attendance and how eager they were to hear my story and my perspective.  I was lucky enough to be asked back again this year to participate in this event. Honestly I was wowed at the amount of medical professionals(students) that were there, probably double the number that came last year, and how excited and enthusiastic they were to be a part of the event. There were professionals there for the second year in a row and I was met with an overwhelming amount of respect and openness to learn. It was a well put together, very educational and just plain fun evening.                                                                                                                                                    In the future I hope that other Medical Colleges will take a page out of Russell Sage College and The Steffens Foundation’s book and put together events like this to teach and explore the world of Collaborative care. It has changed my life as a patient and really made my medical care much more functional. I feel like I am finally receiving proper medical treatment for my Chronic Auto-Immune Disease from my head to the tips of my toes and I could not be happier and healthier. If you feel like your medical care could be better or you feel like something is missing when it comes to your treatment, Chronic illness or not, Speak Up! Its your body and your life that is on the line and you deserve to be heard and take seriously. Even if you have to find a different place of treatment to do so. You are in charge of your body and what goes in and out of it. Do not let anyone make you feel like your feeling are false or an overreaction. It is our right to receive the best care as patients so do not be afraid to fight for that care!

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

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

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. 

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.

A dream is a wish ur heart makes…

 

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!

“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 (Rheumatologist) suggested 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

My Disease builds bridges

I am an advocate for an AutoImmune disease that I have had since I was just 19 years old. I have struggled for years to find a place where I could feel comfortable with my life living with a rare chronic illness. I needed an outlet to put all of my frustration, fears, pain, depression, challenges, questions, emotions, just everything going on in my head regarding my illness and how it has affected my life , my goals, my everyday self. Advocacy work checks all of those boxes for me and so many more! Being diagnosed at such a young age I found it extremely difficult to in a sense where I belonged. I wasn’t exactly a “ normal” women nor was I “healthy”. I was a young adult who was quite sick, highly emotional over being sick and wanted a place or something or someone to unload all of my feelings and issues and questions but in a positive way that could help other young adults like myself not feel the same things I felt and not have anywhere to turn to, or anyone to speak with about all of those emotions. 

I think what first turned me onto advocacy work was being able to tell my story and not feeling like I was being judged or pitied. People really were just interested in hearing what I had to say about what I went through and all the bumps along the way. I think they were curious how a young woman ;like myself deals with the struggles and challenges of being so sick and so young at the same time and wondered how I balanced my life to even find the time to tell my journey. After a few speaking events that I attended and spoke about my journey I started to realize it wasn’t just being able to speak my truth about my disease and what was happening to my body and my life. I also really wanted to be a voice for the young adult autoimmune and rare disease community. I wanted to stand up for my fellow survivors and fight for our voices to be heard and to let the World know that we are here! I wanted to be a platform for patients to speak their truths and to induce change in the autoimmune and rare disease communities, because for the most part young people’s voices and visions about living with severe diseases were considerably lacking. After all we are the next generation of this community and shouldn’t our stories and our ideas be heard and taken into consideration?

Scleroderma is a fixture in my life!

• There are days that I can breeze through life. Days when everything comes so easily no fuss no muss, no pain no fatigue. Those kinds of days give me hope for the future and hope that maybe living with Systemic Scleroderma can be manageable and it won’t always be so hard. I have been living with a Rare Chronic Illness called Systemic Scleroderma since my 19th Birthday 18 years ago. Living with this disease has not always been easy, nor has it been consistent. Systemic Scleroderma is an AutoImmune disease that causes an overproduction of collagen in the body. It also causes the body to fight against itself causing damage to the inside of the body (heart, lungs, GI , kidneys, blood vessels,  and liver) and causes the outside of the body, mainly the skin to become stiff, hard and constricted. As you can probably assume it’s not always “A beautiful day in my neighbourhood” having to live my life with a body that has a complete mind of its own and doesn’t always play fair. When I was first diagnosed I knew nothing about what Scleroderma was or what symptoms were common.  Back then there was not a ton of educational information about Scleroderma at all! The only information that I could find was that it was a Rare disease that affects mostly women ages 45 and up. It was a disease with no origin and no cure, and the life expediency was 10 years after diagnosis. Which meant it was a fatal disease. When I think back to the original shock that I felt when I read that not only was the disease I had been diagnosed with incurable but also fatal, it still leaves a hollow pit in the bottom of my stomach. That was a heavy pill to swallow at the young age of only 19. My life had just started. I was only in my second semester of College for Pete’s sake. I felt some reassurance when I found UPMC ( University of Pittsburgh Medical Center, shortly after being diagnosed. This Center was the top Scleroderma Clinic in the Country. When I went for my original consultation there I was in awe at how informed and knowledgeable not just the Specialists were but the entire medical staff including the Medical Assistants, and the Front office Staff. They knew so many things, my brain was in an information overload at all of the new information and tips I learned from just visiting the Center for only one day! I left there two days later feeling better about my outcome living with Scleroderma and like I was more educated and prepared for the long journey that I knew was to come battling this disease. 
• However just because I  was more knowledgeable about what it was to have Scleroderma did not mean I was actually prepared for all of the changes that were occurring to not just my body but my emotions, my self confidence and my outlook on my life in general.  It took me a long time to come to terms with the fact that  living with Scleroderma  came with a lot of baggage. Doctors appointments two to three times a week, tests, bloodwork, surgical procedures, and that was just a taste of what I had to go through to stay on top of this disease and make sure I was doing everything possible to keep my body as healthy as I could. The “struggle was definitely real” , and that wasn’t the only thing I had to deal with. I also had to process the reality of having to let go of things in my life that were really important to me and I really did not have a say in the decision making. Scleroderma made those decisions for me and that was a not an easy thing to have to let go of things and goals that were extremely important to me, for example my job it was a big part of who i was at that time of my life I was 23 years old and I had to give up having a career and the ability to advance in my position and make my own living and if that wasn’t crushing in itself I also had to give up school and my goal to get an education and become a Registered Nurse those two things back to back were devastating to me and life after that was hard to bare. “Who was I supposed to be without a job or an education?”  “How was I going to support myself and pay my bills without any form of income?” As it was I had over $200 extra a month added on to my monthly income just in medical bills and prescriptions. “ How was I going to survive?”  
• Finding myself and learning how to pick up the pieces of my broken existence was not an easy feat. It took me something like 5-6 years to come to terms with my life after Scleroderma and that all of my dreams and goals that I once had set out for myself were not to be. During that time it was more important for me to stay healthy and alive than it was to figure out what my goals were for the future. That time period of my life was hard for me health wise. I was having a lot of physical problems especially with my breathing and my skin and I was in and out of the doctor’s office daily and had test after test and more surgical procedures than I could even count. If I did not have the love and constant support from my parents and my sibling I don’t know if I would have had such a positive attitude about everything that I was going through, but eventually I got through it and my disease started to settle down and I was able to focus on my life and the things I wanted for myself and the steps I needed to take to get there. 
• Scleroderma is not a disease that you can ever get a grasp on and be in control of the outcomes of your body or your health. It is a roller coaster of ups and downs and for me it never seems to cut me any slack. But I wasn’t going to let this disease control me any longer or the way I wanted to live my life. So I decided to stop trying to control my disease and start living the life that I was given and  allowing myself to make memories and have fun even though there are a lot of things I can’t do like go ice skating, or scuba diving, or rock climb. There are so many other things that I can achieve and so many places in the world I want to see, and with that thought I started a bucket list of all of the things I wanted to accomplish in my lifetime. It wasn’t like your typical Bucket list filled with amazing vacation spots and adventures and once in a lifetime experiences that you want to fulfill . My list was more of a list of goals I wanted to accomplish for myself . Some were small like completing a 5K or giving a speech to the patients at the National Conference. I also included some bigger goals like to be a Board member of the Scleroderma Tri State Chapter and to have an article be published in the New York Times. It didn’t take long to fill up my paper with about 75 goals that I wanted to achieve in my lifetime and now I had given myself a purpose, but it still wasn’t enough for me. I needed to give back and I needed to try to help others like me who were out there in this world living with Scleroderma and didn’t have the first clue about what it was or how to get treatment. I knew from my personal experiences and all of the hardships I endured I could relate to others, especially younger patients who are having a hard time living with this disease and struggling to come to terms with all of the sacrifices that Scleroderma demands from you. So I started my online Support group the Scleroderma Super Starz  and it just took off! Only 6 months later I have almost 2000 members nationally and Internationally its amazing I am so proud of all of my members for trusting me with their stories and deciding to join and not being afraid to ask for help! It took me a long time to reach out to fellow patients and I am so honored at my Super Starz some of which are newly diagnosed and already reaching out for help! That makes me so happy. Without the group I don’t know if I could say that I am happy at this point and time in my life and I am excited for the future and the opportunities to come. Being an Advocate is my now my career and my purpose in life and even though it’s not a paying job it’s definitely something I take pride in and something I will continue to do as long as I am able to do so!  
• I am not going to ever sugar coat things. Living with Scleroderma is definitely hard and overwhelming and at times unbearable, but I will never give up on myself or my Scleroderma family. Even at times when I am at my lowest and everything seems too hard and I feel not strong enough to get through, and believe me there are times like that. I have learned that focusing less on the things I can not control and  more on the things I can control like my attitude and my  knowing when to lean on my support system I can get through anything if I just set my mind to it. That is what I intend to show others living with Scleroderma that yes! It is hard and yes! Sometimes you might feel like you want to call it quits but there is always a way to push forward and there are things in life worth fighting for and your life is one of the most important things on that list!!

My parents and myself during the height of CoVid , using extra precaution to attend a “drive by” birthday party for my Godson Maverick.

I miss my Friend

Today is one of the saddest days I have had in quite some time. Last night I was given the news that a dear friend of mine lost her 11 years battle with Scleroderma. Most of you probably know who I am referring to but for those of you who don’t she was an inspiration to the entire community. She was a beautiful human being, and I can’t believe I am speaking about her in the past tense. Scleroderma is a difficult disease not just to live with but to watch people you love live with. Death is a normal thing when you are living with a disease that has no cure. I am not saying death is easy or that it is something that I am used to but unfortunately in this community it is par for the course, which is something all in its self. My wonderful friend has fought her entire adult life to push past all of the scleroderma symptoms and to just LIVE! She laughed, loved, was kind and generous, spoke the absolute truth about the hardest parts of this disease, the parts no one wants to speak on, she did. She educated the public with poise and grace. She used her hardest days to raise awareness about this disease in a way NO ONE has the guts to, and for that she is a hero in our community. My heart is cracked into a million pieces knowing I will never get to take that trip to Seattle to visit her and her mom and really grow our friendship. We met on a whim and instantly knew we were friend soul mates! She has taught me how to grow as a person, how to love myself and to put my feelings and well being first, without guilt or remorse. I know she is in a better place, pain free and laughing, but here on earth the despair I feel is without a doubt something I will feel forever. Rest easy my beautiful friend until we meet again!

Cat Davis, a BEAUTIFUL SOUL

Time ticking 💙 Away

I haven’t posted anything in awhile due to my Scleroderma causing an issue with my heart again. This time is was something completely different than my usual A-Fib I dealt with 4 years ago. I had two Cardiac Ablations to correct that in Pittsburgh a little over 4 years ago, and have had no issues until now. Ten days ago I had a Cardiac Event called Ventricular Tachycardia, which is a heart rate above 230 beats per minute. Mine got to 250. I went to the hospital via Ambulance and the rythum broke in the ambulance. I stay two days in hospital on heart medication and was sent home to follow up with my TEAM in Pittsburgh. Locally the doctors wanted to put a Defibrillator in. It’s like a Pacemaker but it shocks you if in the event your heart goes into Tachycardia again.
5 yrs ago NO ONE in Buffalo would touch me or help me with my A-Fib issues so I was not confident they would give me the best care here. So I’m heading to Pittsburgh Monday. You see when your heart beats that fast they worry about the blood not being able to pump throughout the body and you could throw a blood clot. So it’s quite serious. I am extremely confident in my TEAM and if a defibrillator is what I need I know they are the ppl to do it! I want to THANK EVERYONE FOR ALL THEIR PRAYERS AND WELL WISHES!💙💙 I am nervous but I know I am strong and I have a ton of living left to do so scleroderma need to fall in line and coordination with the rest of my body because I’m not going anywhere.

Quick update on my ticker ❤️*

I went to see me TEAM at UPMC and the Cardiac EP doctor ordered a CARDIAC MRI so I had that done. We spoke about different defibrillators and that the subcutaneous one under the arm would suite me best bc my skin in my chest is pretty tight from the scleroderma. The results of the MRI were not favorable to me. I had a mild heart attack apparently and have 15% damage from it but luckily my heart is fully functioning so that is really good! I will leave this Monday to go back to UPMC and have a cardiac catheter on Tuesday to see is I have any blockages or vessel issues. I will then be admitted and start a new heart medicine that is scleroderma friendly bc the one they have me in now it no good for ppl like me long term. The new meds I have to be in hospital for two days to get the right dosage and mg. In Thursday the docs will place the defibrillator under my arm and attach the wires along my heart all under the skin NOTHING INSIDE THE ❤️! I will stay one more night and hopefully problem free be discharged on Friday sometime. My parents are going with me hopefully they don’t murder one another while I’m in hospital 😉 THANK YOU ALL FOR YOU CONTINUED PRAYERS AND SUPPORT! I’m nervous but glad to have answers and a plan of action! I’m not done fighting for my Scleros and myself to find a cure so I’ll be just fine. You know a minor heart attack can’t keep me down! -A💙

Images day three post defibrillator procedure

It’s beginning to look a lot like…

It took me over an hour but I put my tiny tree up “ ALL BY MYSELF!” And this year I added Blue ribbons for Rare Illness awareness. Do not let anyone tell you or make you think ( yourself included) that because you have disabilities that you can’t do everyday things everyone else does, like decorating your Christmas 🎄!! Let the Holiday Season begin!! -A💙

Please vote for my artwork!

www.facebook.com/1260666816/posts/10216091365417827

On the Road AGAIN…

Here I am again on the road. I spend more than half of my life in cars driving to and from Hospitals, Clinics, Doctor’s Offices and Treatment Centers. I guess you could say it’s just par for the course when your living with a Chronic Rare Disease. 

Things have definitely fallen into a routine over the last 18 years. When I was first diagnosed my life was in chaos! I could not for my life find a local doctor who was familiar with my disease and treated patients with it! So my only option was to look outside my state into treatment centers that I could drive to on a regular basis. 

After about three months of hardcore researching I finally found a Treatment Center in Pittsburgh, and as the saying goes “ that’s all she wrote!” I have been consistently traveling from Buffalo my home town to Pittsburgh four maybe more times a year for over 15 years now! I like to think of it as my “ sight seeing adventures!” 

Over the years I’ve not only been to Pittsburgh for Treatment but I have traveled to; Boston, North Carolina, Rochester, and Cleveland. It has been quite an adventure not only leisurely but medically as well as emotionally. I’ve meet so many Nurses, Techs, Aides, Surgeons, Specialists, Clinitions and just everyday people like myself seeking quality treatment for what ails them. 

Today I find myself in the car once again on my way to Cleveland for a procedure. I have been fasting since 11am and we have been driving for over two hours! I’m hungery, stiff and bored! But that’s the norm for anyone traveling by car. 

This is the very first procedure I will have in Cleveland and it involves my heart so I’m not taking it lightly. Honestly I don’t take any procedure, treatment, appointment, consult, checkup etc lightly. It’s definitely all business when it comes to my health. 

So how do I find time for new experiences and fun when I’m constantly traveling for my illness? 

I MAKE TIME FOR IT! I’m a firm believer in living in the present and making everyday and each moment count in life. So I make it a priority to always enjoy my time in whatever arena it’s being used in. On my trips to Pittsburgh, I also go to their movie therater it’s small and quaint and so worth the ticket prices. I make time to try new places to eat each time I’m there and to see and try new things whenever I can. When I visited Boston for medical purposes it was for around three years. I ate everywhere I could, I shopped and bought cheesy souvenirs, I went to the zoo, say a baseball game and took in all the sights! North Carolina was a very similar tail. Do you see the pattern? 

Just because the trip your taking isn’t for the best of circumstances doesn’t mean you can’t enjoy yourself while getting done what needs doing! 

For me today while visiting Cleveland I will get my procedure done and ten enjoy a nice meal somewhere I’ve never eaten with my parents before opting in the car to drive back to buffalo. For me it’s all about the little things in life that I can do to allow normalcy into my experiences as much as possible. Doing these things keeps me sane and helps me enjoy my life even though I’m chronically ill. 

They party doesn’t stop here at least not for me! 

Scleroderma Awareness Month

Scleroderma Awareness Month Day:21

Learning to ASK FOR HELP was something that took me some time to be able to do. It’s still hard. Admitting I can’t do certain things really bugs me. But I have found that by learning to work with people to help me is a great way to get the things done that I need to do! It doesn’t make me any less of a person or incapable!-A💙