“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

My Gram’s Eulogy 

                      Rose Rigoli’s Eulogy
      This morning I’ve been asked to say a few words about my Grandmother Rose Rigoli, but before I begin, I have to say that Eulogies are impossible. Eulogies are impossible because words simply cannot capture love. I will undoubtedly fail to articulate the immeasurable and indescribable; Wife, Mother, Sister, Aunt, Cousin, Grandmother, Great Grandmother, and Friend that she was. For all of us who were lucky enough to know and love my grandma, the only things that will truly capture who she was are the warm memories we each hold within our hearts.

Today I am going to share some of my memories with you.

It’s the little things that seem to stand out the most for me- her rolled up kleenexes, cinnamon on buttered toast, penny-candy, and roses. Yellow roses were one of my Gramma’s favorite flowers. Most people associate yellow roses with friendship, but they also represent JOY. joy is such a fitting word to describe my gramma. She was full of it! Always happy, laughing, smiling, and singing. She enjoyed life and found the beauty in it everyday for the last 85 years.    I remember as a child sitting on her porch stoop and playing “ Mother May I” with my cousins, and hearing her laugh out loud at how we bantered with one another. I loved that laugh! Or the time I tried to do her a favor and iron her Winter curtains before I packed them away for the Spring. I burnt a hole straight through them! I then tried to throw them away figuring she wouldn’t remember them come next Winter (Who was I Fooling my gramma remembered everything). But the smell coming from the iron stunk the WHOLE HOUSE up and I was caught red-handed! Then there were the times we had sleepovers outside. Laying in our sleeping bags, looking up counting the stars and trying to find the Big and Little dippers. There are so many things that I can see and feel as if they had just happened. I can remember waking up every Saturday morning at my Gramma’s to the smell of: coffee, and cinnamon and the sounds of the morning news on the radio. She made the most AMAZING breakfast: buttered toast with a pinch of cinnamon and sugar on top. I still eat it for breakfast almost every morning.    I’m sure everyone here has memories much like mine. They are good memories, something we’ll always have to cherish. It isn’t often that we come across someone so special that, that person stays with you forever. Grandma was that kind of person. The kind of love Grandma felt for us was a love without conditions. She may not have approved of everything we did, may not have liked some of the decisions we made, but she didn’t lecture, she didn’t judge. She just kept loving us, letting us know that she was there and if we ever needed her, we could count on her to: listen, to comfort, to help.   Gram lived a simple life. It didn’t take much to make her happy – a phone call, a card, a visit, or a kiss before turning in for the night. We were the most important people in the World to her. She lived to make our lives better and was PROUD of us all. To think that someone like her felt that way about us should make us all feel more than just a little good. We can never forget that there is a part of her in each of us. Something that she gave to us and asked for nothing in return   Money can be squandered and property ruined but the love we inherited from her cannot be damaged, destroyed, or lost. It has a permanent home in our hearts where it will remain always.  I always thought of my Gramma as immortal. We look up to our grandparents with such a sense of awe, as they represent so much history and so many memories. They are our living roots and their words weave the tapestry of not only their past, but our past as well. I used to love to hear my Gramma talk about her childhood and what it was like growing up as the only girl amongst 3 brothers. She’d talk about all the mischief they would get into and she would laugh and laugh. I’m going to miss her laugh the most. It was one of the best things about her. It was LOUD, and VIBRANT and it was INFECTIOUS. Her laugh could liven up the whole room. There have been and will be times in our lives when situations arise where we’ll want so much to talk to her, be with her, or ask her just what we should do. I hope that when those times come. We can begin to look to each other and find that part of her that she gave to each of us. Maybe we can learn to lean on each other and rely on each other the way we always knew that we could with her. Maybe then she won’t seem quite so far away. Today we honor and celebrate her life and her love. Our lives are more colorful because she was apart of it. So for your WISDOM, your HUMOR, TENDERNESS, and COMPASSION, your UNDERSTANDING, your PATIENCE, and your LOVE; THANK YOU GRANDMA! After you gram, the mold was indeed broken.   It is said that those who touch our lives, inspire us, and love us do so for a lifetime. I know you have indeed touched my life. You have helped me to become a better person. You have shown me that physically unable does not make you incapable, and that finding another way to reach your goal can be more fulfilling than the goal itself. You have made me see that I AM ENOUGH! And that imperfection builds character. Thank you for giving color to my life. I LOVE YOU GRAM!! – A

Namasstay my a$@!! 

Stress! It’s the cause of a ton of physical and emotional issues like for example:anxiety,  high blood pressure, stomach ulcers, heart attacks, and in most if not all AutoImmune diseases stress is the catalyst that causes a ton of complications and makes your present symptoms worse. In Scleroderma this is true as well. Stress can cause a Raynaud’s flare up or heart palpitations. Mostly it makes your already painful symptoms worse and might cause some new symptoms to pop up. So the doctors all say ” eleviate the stress in your life.” ” Don’t let yourself get stressed out and upset.”. Well I hate to burst their rationally educated bubble but extracting all the stress out of your life is literally next to impossible. And I’ll tell you why? Having a Chronic terminal illness alone causes people stress. They have to worry about : eating right, getting enough sleep, making sure they take all their prescribed medicine at the correct time and that it’s the correct amount, and making sure that the prescription refills are called in so as not to run out of pills.Then theres the task of getting transportation to and from all of the doctor’s offices for monthly checkups. Oh and making sure it’s the right day and time so the office doesn’t mail out a missed/late appointment fee. Next there’s wearing the proper clothing for the day depending on the weather outside. If it’s cold , layers it is. If it’s windy or raining. snowing or hailing.Wearing the right items to venture outside is key to protecting the body from getting a virus or possibly phenomena and this is just a taste of all of the things people like me who are living with an Systemic Scleroderma have to worry about on a daily basis just to get out of the house. Eating is a whole other dragon to slay. Having to follow strict dietary rules regarding what you can and can not eat. Worrying about if this box of cereal is gluten free, or that all the fruits and vegetables are organic and fresh not canned or frozen. Passing up all the chocolate cookies and all products that have caffeine in them because of a heart condition prohibits having it. The list of do’s and dont’s goes on and on. That in it’s self can be extremely stressful  and can cause set backs. What a lot of people don’t seem to understand is that living with a chronic/terminal illness, and it doesn’t have to be just an autoimmune disease is a jumble of complicated, rules mashed up with trying to have as much normality in our lives is very hard. I go through a rainbow of emotions on a daily bases. Worry, happiness, anxiety, saddness, physical pain, anger and fatigue just to name a few. I’m sure if you went around and asked a handful of “normal” healthy people they would have stress in their everyday life too. It might not be too that degree but it’s stress none the less. Making my point of it being near impossible to live a life free of stress valid. The only difference between being healthy living with stress and having stress while living with an autoimmune disease is that stress for us can lead to more medical complications that could potentially be life threatening. Don’t get me wrong a perfectly normal healthy person that is living with a mountain of stress on their back could most likely develop medical problem like a heart attack or a bleeding ulcer.  However stress in sick individuals is far more detrimental. Thus leading to my original question; how can we live a life free of stress? The answer is quite clear we simply cannot . Living 100% stress free is completely unrealistic and quite frankly unobtainable. Making a concious decision to minimize the amount of stress we take on , and trying to overcome the emotions that lead to stress by releasing that negative energy in a positive way is the best solution to exterminateing the stress bug from daily life. You could meditate, or take up yoga. There’s classes on almost anything imaginable baking, drawing, gardening, sewing and so on and so on. Some people like myself have pets. I have two beautiful very loveable cats that help me to relax and decompress. Music is a big destressor for me as well as quilting , painting, and reading. Whatever it is that makes you happy and gives you some sort of release for all the junk we pile onto ourselves daily is the key. It can do wonders for you health, your relationships, your overall emotional and physical  deminor is 100% better than having to carry all that negative junk around with you for who knows how long. Let’s face it there is always going to be stress most caused by other issues  and some caused by pressures we put on ourselves. If we can find a constructive outlet for that stress then stress becomes one less thing on your plate to worry about. Which as far as I’m concerned is a great thing!-A

Update #2

Hello there my Sclero-familia. I have been working hard on my blog just for all of you. I have to admit I am not a tech geek so my computer skills are quite lacking but your girl is p…

Source: Update #2

Update #2

 

Hello there my Sclero-familia. I have been working hard on my blog just for all of you. I have to admit I am not a tech geek so my computer skills are quite lacking but your girl is plugging away (with the help of my little brother, who isn’t really little he’s 6’2 and only 4 years younger than I am). I have started to work on my “Tips of the Trade” section of my blog. It of course isn’t quite finished but I couldn’t wait to show all my fabulous followers my progress! So please check it out. Also if you haven’t done so please like and share my blog site iof you would I’d be so grateful I want to help as many people as I can and you my lovely followers are the key to doing so! Try to check out the other pages on WordPress, there are pretty great. There are alot of very talented bloggers out there. Thanks again for all of your support – A

Tea bags and Trinkits

I am not a very sentamental person even as a child I didn’t really have very many trinkits. My sister collected dolls, stuffed animals, she saved movie ticket and concert ticket stubs. Even my little brother had his He-Man action figures, toy guns, model rockets. I just really didn’t have a item I was that obsessed with to want to collect them. I think it really bothered my relatives that I didn’t have a collection of some sort. I think they thought that if I did not have a hobby of collecting something I was “not a normal child”. Well if they only knew how “unnormal” I would be come. So every holiday they piled on the possible collection contenders. Stuffed bears, snow globes, glass shaped little animals, masks with handpainted faces that hang on the wall. You name it I was given it. The problem was I just never felt the need to associate feelings with possessions. When I turned 13 my Godmother sent me a porcelin tea set in the mail for Christmas. It was a mini tea set that was straight from Ireland and it was white and had green shamrocks that were hand painted on the plates and cups. As a child I never played tea party or anything so I was confused why she gave it to me, but it was pretty and I liked that it was straight from Ireland so I kept it. I never said anything to her about it. I just put it on my shelf and that was that. The next time I spoke to her on the phone she didn’t ask me if I liked it or if I put it up in my room nothing! This was quite odd coming from my family. My family was very big on a few things; #1 “Thanks You’s” if you were given something and you forgot to say thank you immediately, you were branded a rude ungrateful brat and read the riot act.#2 Respecting your elders this was a BIG thing within my immediate and extended family. I mean really? We are Italian, haven’t you seen the Godfather?  An adult is an adult you are to respect that and it doesn’t matter if they slapped you across the face. You were to take it keep your mouth shut (if you knew what was good for you) and become invisable for the rest of the day. Even now as a 35 year old adult myself the rule still stands.Lastly my family is very particular about food, again we are Italian. So when we sat down to eat whatever was on your plate you ate! Which wasn’t that big of a deal at my own home, because my parents allowed us to plate our own food.. But my grandma’s house was a different story. When I ate at her house she put the food on everyone’s plate and when I tell you it was a big portion I am not just saying that because I was little. I would have enough food on my plate to feed myself and my brother and sister. So picture yourself as a 5 year old child with a heaping plate of pasta and sauce, salad and a meatball. Now imagine having to finish that entire plate of food or you were not premitted to leave the table. Oh and I forgot to mention that we couldn’t have anything to drink until we finished eating. Now imagine you were a 5 year old child like myself who didn’t really care for pasta and sauce or meatballs. Get the picture? Now back to the tea set.So I wondered for quite sometime why she never asked if I had recieved the gift and if I liked it. After awhile I forgot about the whole thing. Then the following Christmas we all piled in the car to go to my grandma’s house for Christmas eve. When it was my turn to open my gifts I started to tear through them all. I always waited until the last gift to open the one from my Godmother. So when I got to her’s and tore the paper away and saw another mini teaset I smiled. Every year from then on a recieved a tea set from my Godmother. I have over 30 beautiful handpainted tea sets, some mini some regular sized. One is shaped like the characters from Aladdin. Another has gold trim on all of the cups and plates. I have them all in my wooden book shelf in my bedroom. As a child I never really understood the fus about having a collection, after all its just stuff. My Godmother passed away about 7 years ago in March of Cancer, she was only 49 years old. Her passing was devestating to my whole family and myself. I had a wonderful relationship with her. She was funny, quirky, excentric, dramatic and full of life. She was the perfect listener and she always wanted to know what I thought, about any and everything. I didn’t know how I was going to get to a place of peace after she passed away. A few days after she passed I was in my room trying to write the eulogy for her furneal. It was something she has asked me to do over and over again. I had always laughed it off, but when she died I knew it was something I not only had to do but wanted to do desperately. I have never had any issues with finding words to put down on paper. Writting has always come very easy to me. That day sitting in my room it did not. I could not for the life of me find the right words to honor her life. Nothing I was putting down even can close to capturing her soul. For the first time in my life I was truly at a loss for words. So I sat there, pretty much all night. It was about 4 am. The morning of her furneal. I was supposed to give my eulogy in about 3 hours and I had nothing written, not one single word. I though to myself ” This is it, I let her down. The one thing she asked me to do and I can’t even do that for her!”  I started to get up and dropped all of the papers I had on my lap, they scattered all over the floor. When I bent down to pick up the last paper that fell, my eyes glanced inside my bookshelf and stopped on the very first tea set my Godmother had ever given me, the mini one with the green shamrocks on the plates and cups. A smile came across my lips. The first genuine smile I had in weeks. Looking at that tea set I finally understood why my family always pushed me to have a collection. For them it wasn’t about the physical item. It was about the emotions that it brought back when you looked at them. How each and every one had a story, a memory, a tiny piece of your life imprinted into it. So each time you took out that item in your collection, you were taken back to the exact time and place where you recieved it. What you wore, who you were with when you got it, or who gave it to you. A rainbow of memories in every single tiny trinkit. I wrote my eulogy in fifteen minutes right before we left for the service. To this day it has been the best thing I have written. All thanks to a collection of hand painted tea sets. -A

“No,the appendix is on the other side!”

Too many times have I correct a Nurse or even a Doctor regarding my medical history or the medications that  I’m taking. Once my chart had written in it that I smoke 3 packs of cigarettes day for over 4 years, and that I lived with my spouse in California and I had no insurance. “WTH” There are so many things that do not belong together in that statement-its laughable. 1st- I do not nor have I ever lived in California. I have vacationed there as a child and it was lovely but no… I am born and raised in Buffalo New York. I’m pretty sure that the first visit at your doctor’s office they take  history and physical. Which means they examine you from head to toe, and ask you a million questions about your life RE; where you live what type of insurance you have, your age, weight and height, get the idea? The staff “should have” gotten my address before I even stepped foot in side the exam room. That way they have a address to mail my bill, or a phone number to get a hold of me.That brings me to the 2nd and 3rd reasons why someone should get spoken to about the huge screw up that is my medical chart! I am not married, (but thank you for asking) and I most definitely have insurance otherwise I’d probably not be here;because seeing a specialist doctor is a crap ton of money. Now that brings us to the 4th and most offensive blooper on my medical chart. I DO NOT SMOKE! Now this is really very comical and I did have a great laugh about this, after I raised holy hell and probably made two Nurses and a Medical Assistant cry. I have a chronic, terminal illness that is know to affect the lungs in more than half of it patients. As a doctor, (now for the best part of all) who specializes in Intestinal Lung disease!! You would think that the most important thing is to have the correct information pertaining to your patient in their medical chart. Why on god’s green earth would I smoke 4 packs of cigarettes a day when I am living with a disease the hardens and scars the lungs basically until you can not breath on your own. So you would need a double lung transplant or mostly likely you wouldn’t survive. I know there are people who do still smoke with lung problems. I have seen a handful of patients smoke with oxygen tanks! (BIG no-no). That just isn’t who I am and if they did a proper history on me at my consultation, they would have known all this and documented it in my chart. Needless to say when the Doctor found out about the mishap, he was not a happy camper. In fact I did find out several months later that he fired a Nurse not to long after my medical chart mishap took place. Now was that the same Nurse that butchered my medical chart? I have no idea. My point to all this is we cannot relay on others, whether it be medical personal, or even family or friends to advocate for us. We have to do that ourselves. Knowledge is most definitely power when it comes to battling any kind of illness. You are the one living everyday with a disease. There is no one more knowledgeable about your symptoms than you. So get involved, ask questions, make suggestions, and if you don’t agree with something or someone, even if that someone is a doctor or nurse, let them know. I have never gone into any of my 8 surgeries without knowing the procedure front to back, meeting every person that is going to be inside those four wall during the surgery, knowing what the plan of action is per-surgery and post-surgery, knowing where my family is going to be waiting for me, and lastly being 100% comfortable with what the procedure that is being preformed on my body and comfortable with the team of people performing that procedure. You and only you should be the only one in the drivers seat when it comes to your body,health and well being.Take charge of your illness and you might surprise yourself with how strong and capable you really are. -A