Friday, August 6, 2010

What's new

Wow. I knew it had been awhile since I had posted on my blog, but I didn't realize it had been over a month. I'm well overdue!

I really want to update everyone on what's been going on with me, my life, and my illness. So this post is more for family and friends who may need an update. Sorry to those of you out there on the interweb. This may be a little boring for you.

I had stated in one of my previous posts that I am returning to Mayo. Well, the plans have changed. I was originally going so that I could see a neuromuscular specialist about my continued muscle pain and fatigue. However... I called Mayo a couple of weeks before I was due to go so that I could find out which neuromuscular doc I was seeing for insurance purposes. They informed me that I am not seeing a neuromuscular specialist, I am seeing the neurologist who specializes in autonomic disorders that I saw the first time I was up there. They informed me that in order for me to see a neuromuscular specialist I had to be referred by my original neurologist and she didn't feel that it was necessary.

I ended up speaking with my original neurologist on the phone (the autonomic disorders specialist). She stated that she thinks my muscle fatigue is still from my POTS and that she thinks my muscle pain is probably from Fibromyalgia and my fatigue is from Chronic Fatigue Syndrome (CFS). Ugh! The dreaded "F" word! If you have worked with me, any many of you who haven't, you know how I feel about the diagnosis of Fibromyalgia and CFS. For those of you who don't know, let me explain. In my opinion, Fibromyalgia and CFS are diagnoses given to people who have pain in more than one area or continued fatigue in which the doctors cannot find a specific reason for. OR, they are tired of looking for the specific reason. Those diagnoses are a catch-all for something that can't find the cause for. It's a cop-out for the docs. Now, if I have offended anyone with those diagnoses, I apologize. I meant to offend the doctors who diagnosis these "disorders".

Now, with that being said. I have canceled my appointment for Mayo. I had previously made an appointment with a neuromuscular specialist at KUMed for Sept. 24th. I called the other day to see if there had been any cancellations and sure enough, there had. I had my appointment yesterday. At this time, he wants me to see a pulmonolist (lung doc) at KU and then follow back up with him. I will update you all on that later.

Over the past month, while I was waiting for my appt. at Mayo, I have been doing some of my own research. I have also talked with multiple people with POTS from around the country via a great website dinet.org. Through my research, and talking with other people, I have learned about mitochondrial disease. This is something that I wanted to discuss with the neuromuscular doctors. I will discuss this further after I find out more.

Over the last month or so I have started to feel a little better. My dizziness with position change has decreased and I have been able to tolerate a little more activity (emphasis on little). However, the biggest change is in my mood. I am dealing with the changes in my life a lot better now. Don't get me wrong, I still have my days (don't we all?), but overall I am happier. Now, am I feeling physically better because of the meds, time, or my change in mood? That's a good question. Maybe my mood is better because I'm physically feeling a little better. Hmm... Chicken or the egg? Who knows?

I have, however, continued to have problems with muscle pain around my hips, upper thighs, and shoulders. I also have to be careful that I do not increase my activity too much. If I do too much in a day, I am generally down for the count for a day or two afterward. I have been trying to exercise on the stationary bike from time to time like my neurologist told me to. I am only able to do 8 minutes at this point. After that, my legs generally feel really weak and my hips hurt the next day. While some of my symptoms seem be getting a little better, the muscle pain and fatigue have not changed.

Chris is working now. He is working through a staffing agency for a company called IST. However, IST has stated that they are going to hire him as one of their employees. They are supposedly working out the buyout with the staffing agency. They have to debate how much Chris is worth, I guess. Our financial stability, however, is a slow process. He is still not making near what he was prior to going to back to school for his IT career. The job search is going to be a continuous process regardless of his employment status. We also have to consider the loss of my full-time income. All of this happened at a bad time with the economy being so f'n crappy!

The girls are doing wonderful. Kylie just returned from camp. She had a blast! Danica is doing great as well.

Well, you are officially updated. I will try to post more often. Sometimes I just don't feel like typing.

2 comments:

Rusty Hoe said...

You've probably heard this already but have you been checked for EDS? It's a common comorbidity and many of us have that or features of it. My hips are shockers, have been since I was a kid. I often have pain and have to modify my exercise or my hips pop out. That leads to lots of thigh and leg pain as well. I have other joint issues as well which I wont bore you with. Just an idea. Hope you find some good docs soon, it's a story we are all to familiar with. :)

Robin said...

I have not been checked for EDS. I have read about it, and people's experiences with it on the dinet message forum. So far I have not had any doctors check me for any problems associated with POTS. They just said "You have POTS."
There is a small part of me that feels as if something else is going on. I know I have POTS, but I feel like I have something else causing it.

Thanks for you input!