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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.

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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!

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“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

Speak your truth!


Hi my Scleroderma-Peeps, last year I was fortunate enough to be able to attend the Scleroderma National Patient Education Conference in New Orleans. I was approached by a group called SPIN to participate in a interview/video for their upcoming website. Well here it is!! Check it out.

“This video was filmed for the Scleroderma Patient-centered Intervention Network (SPIN), an international organization of researchers, health care professionals, and scleroderma patient advocates. SPIN’s goal is to learn more about issues important to people living with scleroderma, and to develop and test online toolkits to address these issues. All of SPIN’s online toolkits will include testimonial videos like this one, where people with scleroderma can share experiences and tips with others. For more information about SPIN and the research they do, please visit http://www.spinsclero.com.”
Thank you Marie for the great opportunity! I had a wonderful time!
https://www.spinsclero.com/news/2017/04/21/a-first-look-at-share-your-scleroderma-story

The Future of Scleroderma 

My inspiration has always been the young children and teenagers who are suffering,just like we are with a terminal illness. They seem to always have a smile, and are happy. They seem so comfortable in their own skin, even though they, like us are living with a disease that has no cure. They always seem ready to crack jokes and just be present and enjoy what is right in front of them. Living their lives one day at a time. When I was burst diagnosed i was very private about my struggles it took me a long time to get to the place I’m at today.  We as adult should take a page out of their book and be more appreciate of what we have. Not focus on the things in our lives that we cannot change or what parts of our lives that has been stolen from us. I am a firm believer in positive attitudes and living in the now, That is something children and teens do on instinct with out being told too or forcing themselves to feel a certain way. Everyone, including children and teenagers have bad days and some have days that are ten times worse than you could ever imagine. Its not the everyday bumps in the road that we endure that shows others how strong we are. Its how we dig ourselves out of that ditch when the chips are down and back to the living that is inspirational. And children and teenagers are the strongest most inspiring people around for that reason and many more. -A

Time After Time

 

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If I knew 10 years ago that I would lose one of the most important people in my life, obviously I would have done so many things differently. Isn’t that the way it always goes though? We never really get to have the time we want with our loved ones. Today March 15, 2007 I lost my Aunt to cancer. She was only 49 years old and she was the kind of person that if you only met her one time, your life was forever changed. My Aunt was so generous with her emotions it was refreshing, but also terrifying because she expected you be as open with your feelings as she was with her. She would argue with you about anything. She just loved to debate with you. She loved information, she was constantly reading and searching the internet and finding out as much information as possible about the most unusual and unique things. She once sent me a book by mail discussing the different ways people in the 1800’s were killed. (lol) When I told her I had Scleroderma she was obviously upset but in her eyes I saw that little spark she always got when she was curious about something.  I cannot count the number of times she called me asking me to spell Scleroderma and pronounce it for her. She called it SKELO-DERMIA. I have so many incredible memories, that of course I cherish with my whole heart, but there is always this nagging feeling in the pit of my stomach that longs for the time that was stolen from me.  Having lived with this disease for 16 years I have realized that my life would have been not only so difference in terms of my life and my career, but also I have not doubt in my mind I would not have had half of the experiences or memories I have now with my family and friends or with my Aunt. I have always believed and I still do that getting Scleroderma made me a better person, on the inside. I was 19 when I was diagnosed, and I was selfish and self-centered. I could have cared less about spending time with my family or giving back to society I only cared about going out with my “friends” at that time and making money at my job to go out or  buying clothes. My initial knee jerk reaction when I was told I had a terminal disease was to go out as much as I could and get drunk! I think I just wanted it to all go away so I didn’t tell anyone what I had at first. Not one of my friends knew and only my immediate family knew. I didn’t tell My Aunt I was sick for some time. I finally had that “come to Jesus” moment when I stopped taking my medicine for about 6 months. I was at my F-you stage in my life, so I decided my meds weren’t doing anything to help “fix” me so to hell with the drugs! It was a little over 17 weeks of drug free-living when I developed a sever ulcer on my ring finger. Eventually it got so bad that I was possibly going to lose my finger. I ended up having a hand surgery that was fairly new, it was only preformed on three other people. I had a sympathoctemy  and it saved my finger. After my surgery I obviously couldn’t keep it from my family and friends anymore. So the first person I told was my Aunt. From that moment on my relationships with people became more significant to me. I didn’t take my family for granted any longer, they were there for me when the chips were down, I couldn’t say that about my so-called “friends” I had in those early years. The last 5 or 6 years of my Aunt’s life we became so close. She was very important to me, I admired her ability to take an idea and turn it into a masterpiece. She was so unique and talented, her empathy for others and her passion for life and love and music was boundless.  After she passed it took me awhile to find my place. She was always asking me “What is your place in this world? What are you going to do about your disease?” I never really took her that seriously or knew what she meant by those remarks until she was gone. From the time I told her she was sick until she passed away, my Aunt had harped on me to have a benefit to raise money for my medical expenses. I always said no because I was at that time still very private about my life and my illness. Fast forward 6 years we had a benefit for me. I was kind of crazy lunatic about everything we were doing for the benefit, “YES! I planned my own benefit, I have OCD don’t judge me.” The benefit was a big success and that sparked an idea for me, I started a Facebook page called Staying Alive with Scleroderma, to help others like me with issues they are having and to give advice to my followers who like me were struggling in their daily living with this disease. I found that I really like it and I was good at it. I have well over 2,000 followers, some from other countries that are on my page. Once I accomplished that I wanted to find new  bigger and better ways to help my  Sclero brothers and sisters. A year later my sister and my close friend and I  started to do a bake sale every year to help educate local people about Scleroderma and it also kept my Aunt’s dream of having a benefit for me alive by having a small fund-raiser to help me with my medical expenses. This year will be our 4th year having the bake sale. I have been trying so hard to get the local news to do a piece on Scleroderma and my journey and I have been just trying my hardest to get some of my articles printed either in ink or online so that I can tell my story and try to help others suffering in silence find their voice. As much as I long for more time and more memories of my Aunt I have no regrets about how we spent the last years, months, weeks, days of her life together. I cherish each and every one of my moments with her and I owe her a great deal, because she helped me find my way and to discover what my place in this world was. It was to use my voice to help others living with this disease. I hope she is looking down on me and is proud of the progress I have made so far, because I have her to thank for all of it. I love you Aunt Trish-A heart

Face the Music..

The first pic. is my Senior picture 2000. The next one was when I was 21-22 and the last pic. was taken about 3 years ago I was 31-32. You can clearly see the changes in my face.

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It is very rare to find a day where I am not either in pain, exhausted, bummed out, stressed out, or all of the above. I can’t remember a day when I was free from all of my aliments. Scleroderma has a way of taking your good days and turning them into your not so good days and then eventually your bad days. I have had this disease for almost half of my life now. Isn’t that insane? I have been sick for most of the days I have been alive and breathing. 16 years ago when I was first diagnosed I thought what everyone else has thought, “I don’t feel that sick, Its not going to be that bad.” I did I thought that because I felt “normal” and really wasn’t having too many symptoms besides: wrist and shoulder pain, some swollen finger tips and acid reflex. I had had those symptoms for months at the time so I had already compensated for the uncomfortable feelings and it felt “normal” for me. Back then there really wasn’t much in the way of educational information at the ready for newly diagnosed patients like there is today. If there was I would have understood that my disease is in fact going to get worse probably a lot worse and I need to take my health seriously. But there wasn’t and I didn’t and I learned the hard way.
First I noticed that my face was changing, and I wasn’t the only one who noticed that I looked “different”. Strangers off the street would approach me and ask what was wrong with my face? Or why was my mouth so small and my teeth so large? The changes to my face seemed to happen in the blink of an eye. One day I woke up looking like plain old me with my pudgy cheeks, full lips and Italian nose. Then the next thing I knew I have sunken in cheeks, next to no lips and well my nose stayed the same but you get the picture. I also started to get red blotches here and there scattered on my arms, neck, chest and upper thighs. WTF! i had no idea I was going to start to look like a anorexic clown with poison ivy! I was kinda freaked out and mostly annoyed but I still felt “normal” so I thought to myself; ” Ok just a minor set back, I can deal with no lips and chicken pox face.” ” I’ll just wear extra makeup and I’m good to go.” and I was good to go for now.