Really....there's no more room!

The results from the thyroid test came back normal so I won't be adding any medication for that however, my estrogen levels are low (probably because of the series of drugs I have taken) and the solution for that, another doctor appointment. This time to see my ob/gyn and probably estrogen replacement therapy (more meds) And medication to delay osteoporosis and Vitamin D3 and the medication I want to take because it has helped other people who actually have myositis I can't take, at least not now. We will look at that option again when I see my rheumatologist on August 4th. Really, there is no more room in my pillbox. Really, I am only 42 years old and I feel like I am 84.

So, my solution...I am getting mad and I am getting even. I am not going to sit around and feel like crap so I got home from work, put my tennis shoes on and went for a walk with Jacob and Star. If I am going to ache and I am going to be exhausted, I am going to do the stuff I love to do. I am not going to stop fighting to feel better. Trying to stay positive. Today is hard but tomorrow is another day.

On a side note, I was just looking at our family calendar and it is crazy busy so I decided I better put a date on the calendar for the 2nd WI Myositis Walk. Please pencil in Saturday, September 3rd (this is super tentative because another Myositis Member is helping me and we haven't been able to connect). I know it's Labor Day weekend but I am hoping if we can do it right away on Saturday morning (like 9-11) it won't take away from your other plans for the long weekend.

First things first

Today I saw an endocrinologist and she said I have secondary adrenal insufficiency caused by years of taking steroids. The treatment is 5 mg of prednisone forever. I also learned that if I ever get sick with a cold or infection I need to double the dose until I feel better. If I ever get the flu, and am throwing up or can't keep anything in, I have to go immediately to the ER and get a stress dose of hydrocortisone.

In addition to that update, she ran more lab work and question why I ever stopped taking the medication for hypothyroidism. Not sure, just had a doctor tell me I didn't need it anymore so I stopped. Hypothyroidism doesn't go away. She suspects that the tests will come back and I will need to start medication for that too. This might be the cause of the fatigue. If the new meds don't help, then she thinks we can look at moving to the rituxen for my myositis. She also recommended that I start a low carb diet as I am predisposed to diabetes and bone density issues because of all the medications I have been taking over the years.

With all that being said, wouldn't it be nice if the change to my diet helped me lose the weight I have been trying to shed over the past 5 years. Wouldn't it be cool if it was just my thyroid that is causing fatigue and muscle aches?

I'm good. Taking each day as it comes and being thankful for my friends, my family, the blessing of being a mom, a wife, a sister and a daughter.

Have a great weekend.

When I know more, I will post again.

Thanks.

Kris

PS - Phillipians 4:13 is now hanging on a chain around my neck. It's a great reminder as I start each day.

I can do all things through Christ who strengthens me.

Not as easy as a phone call

I knew when I left for work this morning that I would be coming home to rest before the day was done. By noon I was headed home. This morning I left a message for Dr. Cohen letting her know that the low dose of prednisone did nothing to help my aches and fatigue. She called back this afternoon and instead of lining up the Rituxan, she told me we need to do some more tests to rule out it being anything else.
First, a test of my adrenal glands. It could be that they aren't working like they should be and that is causing the fatigue and aches.
If it's not that, then we will do a full chemistry panel and the doctors will make sure it's nothing else.
An EMG and EKG might also be ordered and maybe a muscle MRI which is a new technology that wasn't available three years ago. Not everything at once, the easy things first.
It is much like putting together a puzzle. Look at this piece, does it fit? Look at another piece....does it fit?
In the end the puzzle is completed but it takes patience and the right set of eyes.

I don't remember....

I think of it often but don't take the time to get back to my blog and write what's going on with me.
The thing is, I don't remember what it feels like to feel great. June marks the 5 year anniversary of the results of the muscle biopsy. The scar in my thigh has faded, the disease has not. There are many days that I am sick and tired of being sick and tired. What would it be like to not have to push through a day? I go to the gym because I can. I go to work because I can. School functions and church functions because I can. Actually, there isn't much I can't do, but the price is fatigue. This has not gotten the best of me, but it has gotten me back to the doctor. Last week I decided I had had enough and there has to be something else we can try. I had a cold so the increased fatigue may be from that. My red blood cell count is low. Not low enough that it caused any alarms for my doctor accept now that the aches and fatigue have come on stronger I am being monitored more closely. The aching in my arms and hands is a daily thing now. The fatigue is....well, exhausting. I am back on a low dose of prednisone and she has prepared me for the fact that I might have to take it forever. She is hoping that will help me kick this thing but if it doesn't, she would like me to start a new medication called Rituxan. This is two infusions (they can take 2-5 hours), 15 days apart that could make me feel good for up to six months. When the Rituxan wears out, I can get another infusion. They use the drug primarily to treat people with Rheumatoid Arthritis but it has been effective in people with dermatomyosits as well. Last week I wasn't so sure I wanted to go this route, today it seems like it might be the right choice. Everything has side effects, all medications carry with them risks. My doctor has to disclose the risk but also feels that the positives would outweigh the negatives. I'll keep you posted on what I decide.
A few of you have asked if there will be a second annual Myositis walk and I know there will be. I just don't know if it will be the first or second Saturday of September. I do know it will be at Nicolet High School again and I am thinking of how to incorporate a running aspect into the event as well. The raffle was a last minute thing but it was raised a lot of money so if you know of any business owners or people who would want to donate gift cards or other items to that part of the event I would really appreciate it.
Take care my friends.
I don't take for granted each day I am given. I count my blessings instead of sheep. good night.