"30 Things You May Not Know About My Invisible Illness" Day 2

4. The biggest adjustment I’ve had to make is: learning to say “no”. Learning that I do have limits and I have to take care of myself. The worst part is 90% of the people I know do not understand this and often get their feelings hurt.  

5. Most people assume:   It's in my head.....after all Systemic Sclerosis is internal and can't be seen.

This blog seems pretty boring tonight.  What do you guys want to know?

"30 Things You May Not Know About My Invisible Illness"

Hey Guys!
I was reading through my tweets today and a fellow autoimmune "spoonie" posted a blog called "30 Things You May Not Know About My Invisible Illness".  Every day she posted a fact about her and her invisible illness which happens to be Lupus.  I have not had much to write about on my blog lately so I thought I would write about my own invisible illness, Scleroderma.  Each day I will post 1 fact or a common question that I often hear.  Today I will post 3 to get the ball rolling :)

1)    The illness I live with is:      I have Systemic Sclerosis which is the internal diffuse form of Scleroderma. Many times Scleroderma comes with an overlapping diseases.  My secondary illnesses include arthritis, Raynaud Syndrome and very soon we may be able to add Sjogrens......but not yet.

2)    I was diagnosed with it in the year:   2011

3)    But I had symptoms since:     My first symptoms appeared when I was about 14 years old.  I constantly felt exhausted and nauseous.  This is also when I was diagnosed with several illnesses that come from Systemic Sclerosis including IBS, endometriosis, Hypothyroidism and Hypoglycemia. Ummmmm, unfortunately I can't blame the Attention Deficit Disorder on the Systemic Sclerosis LOL!

To be continued.......tomorrow night...........if I have enough spoons..............
 

Bad Day

Scleroderma kicked my butt today! I hope today was a one day flare up and not a preview of weeks to come. I can't find a "positive note" for this blog post except that it's time to sleep. Sweet dreams to all.

End of July Update

Hello Friends!
It has been awhile since my last update and tonight's insomnia gave me the opportunity to write an update. At my most recent appointment we discussed some skin issues (inflammation causing itchiness) and I have found an amazing serum from Clarins that has helped. No more claw marks from scratching makes it easier to dress for summer LOL.
I have also continued my gluten free diet and that has helped a lot with allergies, asthma and acid reflux. Unfortunatly the acid reflux does continue to be a big problem but there aren't many options left for treatment. I have lost another 3 pounds making it difficult to find clothes in my closet that fit. This has been a little depressing.
On a positive note, I attended a birthday party yesterday evening and I was able to have fun, enjoy the festivities and keep most of my spoons.
Every day is a challenge but knowing what is wrong and having a support system has made this disease 40% better. If you know anyone that has health issues please acknowledge their struggle and lend them a hand. Having just one person near that listens and supports can make a huge difference. Thanks to all of you!

North Houston Scleroderma Walk- Help Raise Funds

Hey Guys!  Please help me raise awareness and funds for Scleroderma by visiting this link:

http://www.firstgiving.com/fundraiser/shannasturgeon/steppingouttocuresclerodermamallwalk-houstonarea20

If you would like to attend the walk let me know and we can put together a group.  See details below.

This year’s walk will be held inside Northwest Mall in Houston, TX on Saturday, July 23, 2011 at 8:30 a.m. Closing ceremonies will be held at 9:00 a.m.

Tell your friends, family, and co-workers about the walk.  Invite them to participate and raise funds too. Tell everyone about scleroderma and why you want to raise money to help provide support for those afflicted with the disease and to fund research to find a cause, and ultimately a cure!

It is not necessary for you to raise funds in order to attend the walk; however, should you decide to raise funds, you will have the opportunity to earn incentive prizes based on the amount of money you have raised.  Some examples of our past incentive prizes include: umbrellas, blankets, tumblers, koozies, and other awareness items.

Sign-in will begin at 7:45 a.m., where pledges will be turned in and incentive prizes distributed.  Door prize tickets will be available for purchase as well. 

• Registration: Adults $10 each. Children 12 & Under $5 each. Registration fee includes a T-Shirt. Payment may be made by cash, check, or credit card.

Gluten

Sorry it has taken so long to get back to everyone.  All blood work is normal so I will continue to take my medication and take care of myself.
I still continue to struggle with shortness of breath, fatigue, asthma, allergies, skin problems, swollen achy joints and major acid reflux.  Because of these issues I went gluten free hoping it would help and it did make a difference (small difference).  I have done a lot of research on gluten sensitivity and I was amazed to find out that many autoimmune diseases are brought on by gluten sensitivity including Systemic Sclerosis, Rheumatoid Arthritis and Lupus.  I saw an article about an organization called the Gluten Free Society and they have a great cookbook out called Glutenology so I ordered it and am excited to try some new recipes.  Maybe cooking will be fun again :).  I also learned that all grains including Sorghum, Corn and Amaranth still contain gluten but contain a smaller amount than wheat, barley, rye and oats.  It's gonna be hard but I'm going to start avoiding these too.
I want to give a shout out to my padded cell, crazy conversationalist, wine buddy Linda who tried to tell me I needed to cut these things out.  She knows what she is talking about :)

Good Heart

Hello All!  

I received my results from my echocardiogram and everything looks great.  All valves are functioning just fine.  However, I haven't felt so great the past few weeks so I made an appointment with my primary doctor.  We just did a little blood work so he could check out my liver.  He is worried that I may not be processing a certain protein correctly?  I am not really sure what that means but he acted like it wasn't a bad scenario and could be fixed easily.  

On a happy note: Tomorrow I get to color Easter Eggs with my baby girls :)

Follow Up With Rheumatologist

I went in for a follow up with my rheumatologist today and she was not happy with the fact that I have lost so much weight but she said it is typical.  Also, my blood pressure was very low (86 over 50 something) so she is removing one of my medications to see if it gets better.  Now I know why I have had blurry vision and been a little dizzy, LOL!  

I also had my echocardiogram this morning and it was really cool.  The tech lady positioned me in a way that I could see everything and she pointed out the valves, the chambers and the blood flow.  Of course she can't tell me if anything is wrong but I certainly didn't see anything crazy.  I'm sure it will be fine :)

On a happy note:

I was so excited when my rheumy walked in and I saw she has a little baby bump.  She is 5 months along and still wearing suits and heels, LOL!  Her husband is a radiologist so they are 90% sure its a boy :).

Expressive Aphasia

I have a funny new phrase to share with everyone and you will be required to use it in a sentence this week, LMAO!  I will often start talking and my tongue doesn't always say what I want it to say or I won't be able to get out a specific word (due to scarring of the tissue in the tongue).  I was chatting with some people on the Scleroderma support site and we have collectively come up with a name for this phenomenon...Expressive Aphasia, LOL!  So next time we are chatting and I can't think of a word, or I can't get the word out of my mouth or I say it completely wrong....I will be blaming it on expressive aphasia.

On another note, I received official word today that my barium swallow test was totally normal however the Doc suspects that I did have some bacterial overgrowth.  I felt so much better after the Cipro and that is what is used to treat bacterial overgrowth.  So technically, if I had never had food poisoning then I never would have been treated for the bacterial overgrowth and could have ended up with something worse.  Blessing in disguise I suppose :)

Hello To All

Hey Everyone!
Just wanted to send out an update since I haven't blogged in a long time.  I am actually feeling pretty good and have a lot of energy.  Going gluten free and my round of Cipro has really helped me to feel better.  Also, the warm weather seems to be keeping me from having so many Raynaud's issues.  I am so happy to be feeling better because things are about to get really busy with work, events and the possibility of a real vacation.  I meet with my gastro next week and my rheumy in April.  I am happy to report my only real issues have to do with joint pain and coordination:).

Gotta go celebrate birthday with the fam.  My mom and dad picked me up a gluten free cupcake from Crave and I CAN NOT WAIT!!!