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 :)
Tuesday, March 22, 2011
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.
Saturday, March 19, 2011
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!!!
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!!!
Thursday, February 24, 2011
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.
Tuesday, February 22, 2011
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 :).
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 :).
Monday, February 21, 2011
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 :).
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 :).
Friday, February 18, 2011
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!
Tuesday, February 15, 2011
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 :)
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 :)
Tuesday, February 8, 2011
February Update 1
How to start this update? Hmmmm....well I guess I will start off by saying how sad I was yesterday because I was too sick to drop by The Village Shoe Shop to ask about some new sassy shoes :(.
However, on a good note I had my pulmonary function test yesterday and I think it showed improvement. The doctor didn't talk to me afterwards but I always peek at the results before handing them to the doctors nurse. I didn't see as many red bold numbers as the first time.
I also met with my new dermatologist today and it went very well. She noticed that I have telangiectasias underneath my fingernails which is often associated with Scleroderma. Telangiectasis are red spots caused by the widening of small blood vessels under the skin. They occur under the skin and usually cause no harm unless they become enlarged. This particular dermatologist uses UV therapy to help with the thickening and tightening of the skin but she did not feel that I was at that point. I am very happy with this news because it involves 2-3 days a week at MD Anderson....no thank you! She said I either have a mild form of skin involvement or I am just in the beginning stages.
She was also unhappy (as was my rheumatologist) about the lack of blood circulating in my hands and feet (from the Raynaud's which raged into full purple toes in the middle of our visit, LOL) so she gave me a nitroglycerin cream to help with the cold days we have been having. I go back again in 3 months.
Tomorrow I will call my rheumy to discuss a visit to a Gastroenterologist and I may move up my echocardiogram.
Stay warm everyone!
However, on a good note I had my pulmonary function test yesterday and I think it showed improvement. The doctor didn't talk to me afterwards but I always peek at the results before handing them to the doctors nurse. I didn't see as many red bold numbers as the first time.
I also met with my new dermatologist today and it went very well. She noticed that I have telangiectasias underneath my fingernails which is often associated with Scleroderma. Telangiectasis are red spots caused by the widening of small blood vessels under the skin. They occur under the skin and usually cause no harm unless they become enlarged. This particular dermatologist uses UV therapy to help with the thickening and tightening of the skin but she did not feel that I was at that point. I am very happy with this news because it involves 2-3 days a week at MD Anderson....no thank you! She said I either have a mild form of skin involvement or I am just in the beginning stages.
She was also unhappy (as was my rheumatologist) about the lack of blood circulating in my hands and feet (from the Raynaud's which raged into full purple toes in the middle of our visit, LOL) so she gave me a nitroglycerin cream to help with the cold days we have been having. I go back again in 3 months.
Tomorrow I will call my rheumy to discuss a visit to a Gastroenterologist and I may move up my echocardiogram.
Stay warm everyone!
Sunday, February 6, 2011
Special Shoes
I am super duper excited to report that I found a special store in the Village that makes custom shoes for people with foot issues. AND they can make them pretty! I have been so sad giving up my cute heels for stinky flats. Tomorrow after my pulmonary function test I will drop by to see what they can do. Maybe I can get a sassy pair of heels I can actually walk in, woohoo!
Saturday, February 5, 2011
So Many Different Types of Scleroderma - Mine Is Called Systemic Sclerosis
So I bought this book by the top Rheumalogist/Researcher of Scleroderma here in Houston and there is so much to learn. She does an amazing job of explaining the 2 main types of Scleroderma which can each be broken down into 3 sub categories.....so technically there are about 6 different variations of the disease which confused me even more, LOL!
The variation I have is called Systemic Sclerosis or Systemic Scleroderma which as explained earlier affects internal organs as well as a small portion of the skin (hands and feet). My questions were.....what exactly does the collagen do and why does it "overproduce"? And why does the disease effect the heart, lungs, kidney and GI tract? Unfortunately, the why part of my question doesn't have an answer which is why I don't have my magic pill. In order to understand why these things are effected it helped to first understand what collagen is; Collagen is a natural protein that is made by cells and deposited outside of the cell. It is what makes your skin firm, and it is the major component of connective tissue. Connective tissue is skin, tendons, joints, ligaments and "capsules" around organs - it is what holds you together. When you get a cut, collagen is laid down to form the scar.
As explained by Maureen Mayes, "The problem in Scleroderma is that cells start making collagen as if there is an injury that needs to be repaired, even though no such injury has occurred. And once started, the cells don't turn off. In systemic scleroderma this happens first in the skin, and then can occur in the lungs, the gastrointestinal tract, the muscles, and elsewhere in the body. This excess collagen gets in the way of normal functioning. The fingers don't bend well because of the collagen buildup in the skin; the lungs can't exchange oxygen for carbon dioxide effectively because there is a thick layer of collagen where a very thin membrane is supposed to be; the esophagus and bowels can't move effectively because there is scar tissue where muscle fibers are supposed to be and scar tissue in the heart can interfere with the usual electrical conduction system and cause an irregular or slow heartbeat."
She also goes on to explain that those with Systemic Scleroderma have the extra whammy of having to deal with vascular disease which causes the Raynaud's phenomenon and kidney disease. Basically, the small blood vessels narrow and sometimes the blood channel is totally closed.
I hope this is helpful. When people ask why, what and how it is hard to explain.
Next week I have a follow up appointment to see if my lungs have improved since treatment and I will also meet a new dermatologist that uses a special UV therapy on skin to break down collagen. Hopefully, I will get to use my pinky fingers again, LOL! I have an Echocardiogram scheduled for April but I may go ahead and move that up so my Rhuemy can give me the results in April. I will update everyone then.......unless I get more words of wisdom from Maureen Mayes.
The variation I have is called Systemic Sclerosis or Systemic Scleroderma which as explained earlier affects internal organs as well as a small portion of the skin (hands and feet). My questions were.....what exactly does the collagen do and why does it "overproduce"? And why does the disease effect the heart, lungs, kidney and GI tract? Unfortunately, the why part of my question doesn't have an answer which is why I don't have my magic pill. In order to understand why these things are effected it helped to first understand what collagen is; Collagen is a natural protein that is made by cells and deposited outside of the cell. It is what makes your skin firm, and it is the major component of connective tissue. Connective tissue is skin, tendons, joints, ligaments and "capsules" around organs - it is what holds you together. When you get a cut, collagen is laid down to form the scar.
As explained by Maureen Mayes, "The problem in Scleroderma is that cells start making collagen as if there is an injury that needs to be repaired, even though no such injury has occurred. And once started, the cells don't turn off. In systemic scleroderma this happens first in the skin, and then can occur in the lungs, the gastrointestinal tract, the muscles, and elsewhere in the body. This excess collagen gets in the way of normal functioning. The fingers don't bend well because of the collagen buildup in the skin; the lungs can't exchange oxygen for carbon dioxide effectively because there is a thick layer of collagen where a very thin membrane is supposed to be; the esophagus and bowels can't move effectively because there is scar tissue where muscle fibers are supposed to be and scar tissue in the heart can interfere with the usual electrical conduction system and cause an irregular or slow heartbeat."
She also goes on to explain that those with Systemic Scleroderma have the extra whammy of having to deal with vascular disease which causes the Raynaud's phenomenon and kidney disease. Basically, the small blood vessels narrow and sometimes the blood channel is totally closed.
I hope this is helpful. When people ask why, what and how it is hard to explain.
Next week I have a follow up appointment to see if my lungs have improved since treatment and I will also meet a new dermatologist that uses a special UV therapy on skin to break down collagen. Hopefully, I will get to use my pinky fingers again, LOL! I have an Echocardiogram scheduled for April but I may go ahead and move that up so my Rhuemy can give me the results in April. I will update everyone then.......unless I get more words of wisdom from Maureen Mayes.
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