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!!!

Why so sick?

Hello everyone. This just a quick update to explain my complications. A lot of people have had questions so I figured I would add a post. I had Food poisoning this past week and most people get over it in a few days. With Scleroderma the GI tract can be compromised. The bacteria from the food poisoning made a little home in my intestines and caused bacterial overgrowth. On top of that, my acid reflux got worse and I was laying flat on my back for several days. The acid fried my esophagus, inflammed my sinuses and I aspirated a little into my lungs. This is why I am so sick. But I got the Cipro and my temperature has gone down. I hope I get to eat some yummy food soon.

101 and rolling out the Cipro

So I still feel like a Gremlin that was fed after midnight and the gastrointestinal nurse was sooo rude. She basically told me to take Immodium and eat potatoes. This may be a good approach but not with the attitude she gave me. Lesson number one for my girl Breanna...we are not numbers and even if we sound crazy....empathize anyway.
Anyways, since she pissed me off I called general whose nurse Holly is a doll with a Southern accent. She was so sorry to hear I felt crappy and took my symptoms and situation to Dr. Lux who also wanted it to run it's course but to call him if I have a fever. It is 7:09pm cst and all the docs are off duty. I get a fever of 101. I haven't had a fever since like the 5th grade. I guess I have to start Cipro tomorrow. Thank you Holly and Dr. Luxfor caring :).

What a weekend!

Well, I had my barium X-ray done on Friday and it took a day or two to recover.  Apparently Barium can do some really bad things to your digestive tract.....makes sense that you would drink it to find out if there is something wrong, LOL!  NOT!  Any who it came back normal so I am happy to say I do not have any strictures or problems with movement.

On another note, both Sharla and I woke up early Sunday morning with food poisoning (best guess).  We had both eaten something together the day before and both turned into the exorcist for about 12 hours.  We had the girls this weekend so super Jimmy stepped in and took care of me, Sharla, Lola, Addyson and Camdyn.  I am still so sick I can't even watch the food channel, LOL!  That's when you know its bad.

Sharla has recovered fairly well but I can tell it will be quite some time before I'm back to normal.  I guess it's pedialyte and soup for the next week.

I also forgot to tell everyone about the shoe shop.  They do make custom shoes but they START at $950.  I'm not so sure I can swing that so I am meeting with a foot doctor tomorrow to see if he can make some inserts for my shoes.  He thinks he can take some pressure off of my big toes so that I can wear my old heels :).

Barium Stinks

Hey Everyone!  Not much to write about today but went in to the Med Center for a barium Xray of my esophagus and small bowel.  It was not too uncomfortable but my tummy is paying for it NOW.  I'll let you know my results when they come in.  Happy long weekend!

Goin' Gastro

Today I had a charming visit with my new gastoenterologist, LOL!  Friday morning I will be going to Methodist in the med center for a barium X-ray to check my esophagus and small intestines.  Systemic Sclerosis can cause a weakening of the muscles at the lower end of the esophagus, which normally prevents stomach acid from coming back up....thus the horrible constant acid reflux.
I have also had a little extra trouble swallowing which could be caused by scar tissue building up causing the swallowing passage to narrow.  He also wants to make sure I do not have trouble with motility (weakness of the esophageal muscles) or have strictures in the esophagus.  
He said that many patients also end up with bacterial overgrowth caused by diverticulitis that is undiagnosed.  All of this can be determined from the barium X-ray which makes me very happy.  I was not looking forward to the words "scope" or "colonoscopy".  Good news for me.....but how am I going to break it to Jim that he has to put cinder blocks under 2 posts on my giant queen size bed, LOL!?

Also in the news.....I have my first Raynaud's ulceration on my left pointer finger.  It is so tiny!
Thanks for listening :)