PRAISE

If anyone is still reading...sorry it's been three months since the last post. I really wanted my blog to be about my artwork but that will have to wait for now. I have some medical information I wanted to pass along and hope to get back to the fun, creative stuff soon. Until then....

Let me start by first saying my HOPE and my HEALING comes from the Lord not medical information but I feel that education and wisdom are part of the process.

I was diagnosed with an auto-immune disease called: " Systemic Scleroderma w/ mild lung involvement. "

There is a scleroderma foundation website that is helpful and I'm thankful to say that the more information and stories I hear, the more encouraged I become. There is no medical cure, and the disease affects everyone differently. I would APPRECIATE if anyone reading has any information to share, please do so. If you are in the medical field, or have any personal stories of someone you know I would like to hear them. Good or bad. My email is: toddsuzy@bellsouth.net

Symptoms:
about a year ago, my hands started hurting and swelling. I went to the doctor, had bloodwork done and was told my thyroid levels were off. I started medicene for that and my thyroid went downhill. By March it was growing and I started to feel as if someone had their hand around my throat. At no point (to this day) have I ever had trouble actually swallowing food, or not keeping food down, but rather a pain in my neck (LOL). Feels achey, sore...like an earache w/ drainage. I've seen lots of doctors (endo, ENT, rheumo, pulmo) have had tests done, and have been told all is okay. Not sure about that and will try to see my ENT again. In June, 2009 I had a thyroidectomy and thought things would be fine and better. The surgeon said (literally) that he had to cut, burn, scrape and dig and he would not be surprised how long it took me to heal". Um, red flag. Nice of him, huh? Well, that is how I still feel today.
I have had a significant weight loss. As you probably know even to loose 5 pounds is not an easy task. I was NOT in any way trying to loose weight. At first I was aggrivated actually b/c I couldn't eat. I LIKED to eat. Well, that has really changed. I'm just not hungry much anymore. If I don't think about eating or make myself eat I probably wouldn't. It is quite a change. While clothes fit better and it's nice to be thinner....looks really can be deceiving. Looks are superficial. I would take 50 pounds back in a heartbeat to feel better. If you're out there, reading this, trying to loose weight I say enjoy who you are. I do eat by-the-way and it is probably a much healthier quantity. Food tastes the same and I eat the same things, just a much smaller quantity. With it being so cold I have not exercised at all so I guess it's all about the portion size.
I have been freezing cold. Not a normal freezing cold either. I must have electric heat or a fire to warm up LOL. Right now I have a heated mattress pad, elec blanket, heater, heating pad, and a nice little towel spa that heats my towels. I often throw things in the dryer to warm them up. (one of life's greatest tips). Around last Sept. my hands started turning white (loosing all color) for about a minute or less and then turning blue. very scary. This is what lead to me being referred to the rheumatologist that diagnosed the sclero. This cold, white-blue thing is called Raynaud's. Had never heard of that either. Most people w/ Raynauds do not have sclero, but sclero patients all have Raynauds to my understanding. Last week I was prescribed medicene for the Raynauds but I havent' started taking it yet. Will soon. The main thing is to wear gloves and try to stay warm. After reading more about it, you will notice I try to make myself wear gloves alot. Thankfully I have no wounds or any other symptoms except discoloration.
One of the first signs of sclero is skin involvement. Even last summer I had people saying I looked like I had been in the tanning bed which I had not. During the summer I didnt' think much of it but my skin was browning and I have some little white "splotches" in a few places. My skin on my arms (almost to my elbows) is red and tight. The skin on my chest is shiny which is a specific sign. The skin on my face looks and feels tight. Cuts down on wrinkles :) but I think my face is starting to look like a person w/ sclero. Most people probably do not know or notice it though.
I have digestive issues and heartburn. Medicene controls the heartburn so that is good. I have found it's nice...really nice, to have medicene that you KNOW works. A year ago I took no medicene and it's very hard to take so much especially when you don't know if it's working.
I'm very tired alot. Not sleepy just tired. But I have found that getting up in the morning (when I really want to stay in my warm bed) is good for me. Staying busy keeps me going and I like that better.
Lungs: This is what scared me the most. Some people w/ sclero just have skin involvement but when it involves your organs, prognosis changes. I had tests run and was told my heart, liver and kidney were all within normal range. That's when I was told I had mild lung involvement. Scan showed mild scarring of the lungs. A few months ago I first noticed my breathing "changing" when I was singing at church. I could sing one verse and be out of breath. I like to sing and so I'm not real happy w/ this but for some reason singing changes my breathing. Feel like I have something sitting on my chest. So, I just sing as I can, pretend, say the words (lol) and go on. I had just started singing in the choir at church and loved, loved it. I love choir practice but felt the need to stop for now. Guess there are reasons and seasons for things. A trip to WalMart would also do me in. I cannot stand to go to WM anymore and feel out of breath after a trip or two around the store. Other than that I think my breathing has been normal. If not for the singing thing I probably wouldn't have even noticed. I finally had an appt. w/ a pulmonologist this week and that was the results I've been waiting on. I had lung function tests done..and a six minute walk...and DLCO was the only thing out of normal range THANK THE LORD !!! If it means anything to anyone reading: my DLCO was 64% and 70% would've been normal. I will see the pulmo every 3 months now and have a baseline to compare numbers to now. It was such a relief though and this doctor is probably one of the best I've seen yet. Nice, experienced and spent alot of time patiently explaining things. I really was pleased w/ him and feel fortunate to have good medical care. My rheumo. is the same way. She is so patient and explains things well. I feel very blessed again to have good medical care. Back to the lungs: the doctor said I'm not even at the stage medically of being diagnosed w/ pulmonary fibrosis (which can lead to pulmo hypertension) so that is such a relief. Another thing is that he was in agreement w/ the treatment other doctors have advised. It is supposedly the "standard" treatment. Again, the more I read about it the better I feel. People have shared stories of how it has helped them and their lung functions improved. My immune system is compromised due to the disease and the medicene I"m taking, but they say to lead a normal life. Take common sense precautions and go on so that is what I'm doing.
My thyroid levels are high again and the endo called this week and wants to see me. I have to see the rheumo. every 2 weeks while I"m taking this medicene so life is filled w/ doctor appts. but I need to see the endo and/or ENT to find out what's still going on w/ my neck. As far as I know most of my bloodwork is turning out ok. Thyroid off, am taking vitamin D, but my ANA markers/levels were normal. I "think" it's called ANA but I may be wrong. Will have to double-check on that but it is something they look for to diagnose the disease ...
TREATMENT:

I am taking thyroid medicene (synth 137), heartburn med (was nexium but now omeprazole), vitamin D, prednisone 5mg (low dose), and a drug called Cellcept. Cellcept is something they give transplant patients so your body does not reject the organs. It lowers your immune system on purpose and I'm not exactly sure why I"m taking it except that it is standard and is supposed to slow the disease and/ or lung progression. The other treatment I'm being advised to do is chemo. It is a chemo called Cytoxin. It would be administered at Schumphert once per month for either 6 or 12 months. They say the IV form does less damage to the kidneys and advise that. I would go one day per month, hook up to IV, they would pump fluid, chemo and fluid again to reduce chances of me getting sick. It would take about 6 hours. Some people do not even get sick from this chemo and most can return to work in a day or two. Most people do not loose their hair so that is good news. I am thankful to have a job with alot of time off and right now will probably see about starting this treatment over spring break. I wanted to get the lung results this week and then make a decision. There is a doctor in Houston at UT at a sclero clinic, Maureen Mays that has written books on the subject. My appt w/ her is in JULY but after getting results this week I am atleast going to try to speak w/ her over the phone. For now I have not noticed any side effects from the Cellcept. I just doubled my dose last week and felt bad a few days but okay now.
whew, did you get all of that ???
PLEASE PLEASE understand I did not share all of this to be negative. I believe my healing is in the Lord's hands. I want to be honest and open in sharing information. I think it directs people on how to specifically pray. Plus there may be others going through something that I am and could share information. I had never heard of Raynauds or Scleroderma so again, please feel free to share. What I have shared w/ you tonight is just medical information. Nothing more. It is a strange, uncommon disease and it's hard to explain to people. Medically speaking there is no cure and the cause is unknown. The doctor in Houston will be the one to "investigate" the cause more and will be likely to know more about that. It can be hereditary but to my knowledge it doesn't run in our family. It can be environmental which is interesting.
So today, I need prayer for:
my neck...just doesn't feel right. Sore
Wisdom. I'm thankful to have the doctors advising the same treatment and to read positive stories about the Cellcept and Cytoxin.
Digestive issues.
SUNSHINE and heat.
NO side effects from chemo. Eph. 3:20
Disease to stay under control, that I do not get sick, and symptoms improve.
Peace. It's hard to take medicene when you don't know if its' helping (Cellcept) and to take chemo when I don't have cancer is a tough decision.

I want to say that when you're told you have a life-threatening illness it obviously changes you. I am thankful to say it makes you really see each day as a gift. Illnesses are a process and right now I'm trying to gain information, education and make wise decisions but also I'm starting a journey where I'm trying to rediscover what I enjoy in life. I want to have FUN. any ideas? My kids and my family are wonderful and I would never change a thing. That part is easy. If there was only ONE thing I could ever ask of the Lord it would be for my boys to love the Lord and respond to Him. They are saved and I am so thankful for my kids. They are a blessing. Beyond measure. But we serve a God that goes beyond one request with His grace and mercy and He blesses me over and over and over every day. I have the best family that loves and supports me unconditionally. And, the icing on the cupcake: I have the best friends. I cannot begin to tell you what your prayers mean to me. I really and truly feel them. I know you're praying. And the CARDS....I have always wanted to be the kind of person to send cards ( I can make them), but I"m not. CARDS have blessed me so much this year. That is probably one of the best ways you have ministered to me. I have an area in my house that I'm keeping all of the cards and I have received almost 50 already this year. It is such a blessing and I thank you. They are a treasure. And, speaking of treasures....I am so blessed to have a friend, teacher, mentor, that has given me a very special gift this week. It will stay with me at all times. I will keep it in my "bag" and treasure it always. It's the most thoughtful gift I have ever received. Thank you Linda. You inspire and encourage me.

My "word" of the year is PRAISE. Looking up scriptures, sayings, songs using this word and making a list if you have suggestions. Maybe next time I will share w/ you what book I'm reading and what I'm studying.
Ok...that's all for now.
Thank you for reading.
I will PRAISE You in this storm.

Suzy