Thursday, March 24, 2011

The Rodney Dangerfield of Rare Diseases

I just love this blog post written by Candace on the IA support group. It is so true!

Our disease does things to our bodies that we can't explain. The drugs we take to stay alive destroy our bodies. How many people who know me had ever heard of this disease before I was diagnosed. I worked in health care for over 20 years and I certainly hadn't heard of it, and many of my doctors have admitted that they had not either. Outside of the support group, very few people comprehend how miserable we may feel on a certain day, and that there is no rhyme or reason as to why it is worse one day than another. Misery loves company. I am so thankful for the support group.

Casey and Jeremiah were married on Sunday in a private ceremony. "Jdub" is a trooper. The second time I met him he was visiting me in a hospital room, bringing me carry out from Outback. He knows the way to Mama's heart. LOL    We welcome him to the family with open arms. Casey wasn't the only one who fell for him fast. He is just like my own child.

For me medically, things are about the same. With the changes in my medicines I had some rough days until we got the doses adjusted.  I am now back to my baseline normal. My feet are swollen but at least I don't have pitting edema up to my knees and my heart rate is back down to around 100 at rest. I have been feeling really bad - tired, aching, chest pain - normal for me but a little worse than average. Next week I go back to cardiology and to orthopedics. I am also having a DEXA scan to see if my osteopenia is getting worse. We expect that it is since I have been on prednisone for nearly a year and off hormones for that long. I really don't know that anything can be done if it is worse - we know I can't go off steroids.

Tomorrow will be a day out of the house for me. I have fasting labs, then we are going to see Casey, pick up Kristen, and then home for Scott to spend the weekend smoking pork barbecue. My mom is making red slaw to go with the pork. I sure hope my cardiologist doesn't read my blog - I am going to have a fat and cholesterol binge. I am also going to have some cake made by my sister-in-law. I don't know if she adds some secret ingredient, but her cakes are the best.

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