Too Excited to Not Share with the World
Today we went back to the Rheumatologist to find out what he discovered with last weeks tests. The outcome was outstanding and we were too excited not to share with the world. The test have come back that I DO NOT have Lupus. They tested the 8 antibodies to rule out whether or not I in fact have Lupus and only 1 antibody came back positive, the antibody for Raynauds Syndrome. Raynauds Syndrome was something we were already aware that I had and have known for a couple years and have been being treated for it. The antibody for Raynauds Syndrome makes the antigen test which they do for Lupus come back abnormal which is why the other doctor originally told us that I had Lupus. The Rheumatologist is telling us that I do have a Limited Scleroderma.
Limited Scleroderma, or CREST syndrome, is one subtype of scleroderma — a condition that literally means “hardened skin.”
The skin changes associated with limited scleroderma typically occur only in the lower arms and legs, and sometimes the face and throat. Limited scleroderma can also affect your digestive tract and can cause serious heart and lung disorders.
The problems caused by limited scleroderma may be minor. In some cases, however, the disease affects the lungs or heart, with potentially serious results. Limited scleroderma has no known cure, and treatments focus on managing symptoms and preventing serious complications. The Rheumatologist is telling us that I do have a limited form of this which is called C.R.E.S.T. which falls under autoimmune disorders, but from what we understand it is managed simply by treating the Raynauds Syndrom and keeping track of the circulation through an Echocardiogram every couple years.
So it is very exciting news to be told I do not have Lupus and at the same time we will continue to work with the Rheumatologist for the coming years to come to make sure that the Limited Scleroderma does not turn in to something more.
I Say She’s a Real Sparkle(r)
Last night was officially the kick off of the holiday week, including a few fireworks of our own here in the yard as well as staying up to watch the Rib Lake Fireworks. It included a new fascination for Alivia with sparklers. True she made us nervous most of the time with them but it was hard to tell which one was more sparkling.
The boys got into it as well and as you can tell, they enjoyed it as well.
The Whole Gang
News Comes in Different Forms
Today we met the Vascular Surgeon in Medford instead of having to go all the way to Wausau, which was a blessing for us to not have to drive as far as we have had to in order to see anyone. It seems the biopsy results were more favorable than we thought it was going to be. The purpose of the biopsy was to find out to what extent the Lupus was present in the foot and to help determine the course of action the Rhuematologist would take when we are finally able to get in to see him. What we found out instead is that the Lupus is hindering the healing process but the majority of the issue are the veins in my leg from my knee down which are causing the problems. So we don’t know how much the treatments for the Lupus will do for the foot issue, but we do know that a majority of the problem is more related to the veins. So continued time off my feet is what is going to be most beneficial at this time. Camp has graciously allowed me to be off my feet, and has found ways to utilize me other than in the kitchen. Disappointing to not be in the kitchen, yes. But we are so grateful for the love and support and flexibility that Camp has extended to us as we seek out a solution to the issues I have been experiencing.
Many have asked us if it takes so long to see the Rheumatologist in Wausau, WI, why not find another one to get in and see sooner? The answer is that unfortunately it isn’t that easy. Because of the nature of how specialized a Rheumatologist is and because I will be being seeing the same one every time the Lupus flares, we felt it best to find one that was good and one that was as close as possible. That best choice came in Wausau, Wisconsin. That and we would have had to wait the same amount of time to see any of the other possibles! We have come to realize that the first appointment with the Rheumatologist will last 2 to 4 hours depending on testing and reactions to different potential flare inducing stimulus. So hopefully that clarifies a similar question maybe you have had.
So Much Summer Fun
Well several years ago, Julie bought me a hammock from Columbia and we never put it up. So with the arrival of Aunt Jessica and the discovery of the hammock in the garage, she inspired us to finally put it up. There have been many naps in the hammock by Jessica and Julie, but the most fun is to watch the kids fascination with such a novelty item. Of course we have had a few bumps and bruises already from kids thinking they should do “under-dogs” to the other kids sitting inside, but overall it has been a huge hit.
The kids have an opportunity to enter a contest with the dentist in Medford for all the vacation places they have been with their toothbrush. So they wanted to stop and have their picture taken with the Mackinaw Bridge on our way home from Grandma and Papa’s in Michigan.
Since we have sugar snap peas coming out of our ears right now and Matt has some free time on his hands with not being able to be on his feet, he is de-stringing peas with some extra helpers.
No News to Report
For many of you who have been asking how Friday’s appointment went and what we found out….........we didn’t. Two minutes before we were supposed to leave for Wausau Wisconsin for the appointment, his office called to see if they could reschedule as the doctor had been called into emergency surgery and wasn’t going to be able to keep the appointment as scheduled.
So we will hopefully be able to keep the new appointment scheduled for July 3rd, in Medford, Wisconsin. Kind a blessing in disguise as it means we don’t have to travel quite so far to see the doctor. 15 minutes instead of an hour’s drive. Friday’s trip would have been the 13 trip to Wausau in a little over 6 weeks.
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