Monday, July 26, 2010

Remember when.....

Remember when your gut hurt so incredibly you thought you were going to die?
Remember when every time you went somewhere you always needed to know where the bathrooms were?
Remember when just out of the blue you were itchy and had hives?
Remember when you retained water...and you hadn't even eaten something salty?
Remember when even after a good nights rest you were as stiff and sore as if you had run an all night marathon?
Remember when you told your Dr. that you just didn't feel right?
Remember when you thought you were going crazy because you had such mood swings? Remember when you were afraid Alzheimer's had set in because you couldn't remember what you already knew?

If you answered yes to any of these questions then you my friend may have something in common with me. On any given day I could answer at least one of the questions "Yes" and most days I could answer most of them "Yes!"

One and half years ago I began experiencing some things that made me feel like I no longer knew my body. I began losing weight despite eating more than my normal servings. My monthly cycle seemed to be entering menopause. No regrets on that one! But, finally the one thing that wasn't a good thing, my eyes became very irritated and red. They felt very sore, especially in the morning, and my vision was blurry at times. I also noticed that one eye was open wider than the other. I had always prayed for big eyes, but I wasn't sure at 45 I wanted them anymore. Especially if it meant I looked like I was staring or surprised all the time! That was when I sought medical help. I was glad I did as my next symptom was my heart began to race and flutter like a huge butterfly in my chest, and my ankles and legs swelled with fluid. I was in a mental fog that left me frustrated. By May of 2009 I had a diagnosis, Graves Disease.

I chose a thyroidectomy as means of treatment. It seemed less harsh than being secluded and taking radioactive iodine. July 2, 2009 I underwent a 41/2 hour procedure that went very well. The only complication was that my calcium levels remained too low and I needed an IV to help bring them up. (The parathyroid had to be moved during the surgery and was just a little slow at starting to regulate the calcium levels in my blood.) Within a month after the surgery I was feeling GREAT! As the months went by I noticed I was feeling less and less great. In fact, I felt almost as badly as I did when I had first been diagnosed. My first endocrinologist argued with me as he wanted to increase the Levothyroxine (thyroid hormone) that I was on, as I was claiming it was too high of a dose. I found a new Dr. He listened. He agreed I was indeed too high. So we began the gentle, long process of trying to knock down the thyroid production in my system. By February it was clear I needed some tests to determine exactly what was going on. Those tests revealed my thyroid had "grown back" and that it was functioning. With that knowledge it was much easier to dose the anti-thyroid medication I was on. I have been in the normal range twice int he last 10 months, not consecutively however. I have gone from Hyper to Hypo in 4 weeks time.

In April I noticed I had some rather large reddish purple lumps on my lower legs. I checked out the internet for photos of dermopathy, a skin condition affiliated with Graves. I also showed my endocrinologist, who then confirmed that it was indeed "pre-tibial myxedema" and it seems there is nothing anyone can do about it. Even the dermatologist said, "There is nothing to do but get your Graves Disease under control and hope that the dermopathy goes away."

In June 2010 I had my first physical in that year and half. At that time after explaining all my symptoms and feelings to my own Dr. he decided to look for an underlying autoimmune disease that is because it is not being treated exacerbating the Graves. He noted that often times a person has more than one autoimmune disease. Graves my first, now I waited to hear if I had a second.

The tests for Lupus and Rheumatoid Arthritis were negative! YES! But my Dr. found that I have several foods that are "toxic foods" to my system. Most people refer to them as food allergies. He also found that I was critically low in magnesium. He started me on an oral supplement and I had 6 IV treatments called "Meyer's Cocktails" in the course of 10 days.

My high offenders are GLUTEN, DAIRY, EGG, and BEEF. So here begins a new fork (no pun intended!) in the road. Using this blog I hope to share feelings, as well as recipes. I also hope to make some connections with others who deal with these types of food allergies or suffer in silence with an autoimmune disease.

1 comment:

  1. Mary...I do remember those days!! I hope that the Gluten Free diet will be of great help to how you feel, since your cuz too was diagnosed 10 years ago with Celiac Disease. I so remember having the doctors look at me, my symptoms like I was a crazy person dreaming them up. We know our bodies and when something isn't right, one just knows it, if only they would listen to what we are telling them. But back then, it wasn't a very well known disease in the US, so I guess I can't put the blame on them. But the very day I ended up in the emergency room at St. Mary's and the celiac specialist, Dr Joseph Murray, just happened to be on call and somehow my lab results got into his hands. It was a God Thing for sure!! From there on out, one step at a time, from searching on the internet and reading more about this disease and it symptoms and following the diet, it has given my life back to me. God's Blessing on you as you too, figure it all out!! Thanks for starting your blog; it will help those who share a similar story to realize they are not alone. Love, Tammy

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