Thursday, January 22, 2009


I recently discontinued my gym membership at Bally's, since I haven't used it since surgery...That got me thinking.

I know that getting "in shape" again should improve some of my symptoms...most likely the joint pain, if it's the right kind of exercise. Remember that before my spinal surgery last June, I was in top condition, considering my POTS symptoms. My muscles were strong and I felt powerful. My health was better back then, making all of that exercise possible. The problem is: now, each day, I only get one choice of what to do. And four days of the week, Monday through Thursday, the thing that I choose is work. There's no other option, because that income is needed. Gus and I couldn't live without it. So, if I choose to begin some kind of physical therapy or aquatic therapy, I could only participate in it on Fridays. And what I really need is a daily regimen. Unfortunately, when I get home from work each day, I am completely done. I collapse. And don't even talk to me in the a.m. hours. Seriously.

So, when I go back to Ohio to see Dr. Grubb's nurse, and she recommends aquatic therapy 3 days a week, I will wonder which 3 days she could be talking about.

I've just been through all of this before. And unfortunately, my lifestyle now doesn't allow for me to get "back in shape", even though I'd really love to fit into my jeans more comfortably. On days that I don't work, I can rest most of the day, and then do some kind of exercise in the evening hours...if it's a good day and I've made no other work or social commitments that day. The problem is...the days run out. You have to do errands, groceries, laundry, cleaning (ha!), cooking. Gus does most of it, I admit. But life is still very taxing.

I just am running out of energy lately, and it doesn't seem to be my choice on what I expend that energy. The days seem to just happen, and I get more and more out of shape.

So, that's a hard issue to face, because I've dealt with it before, and I just don't have a solution at this time. I'm convinced that exercise 1)Changes my POTS symptoms a little 2)Would help my EDS a bit 3)would help my self esteem a ton.

So, we'll have to see if I can work something out with a new physical therapist. The group I went to for spinal surgery recovery is good, but they didn't know how to adapt to my POTS at all. So, I could go back to the wellness center. But they have a warm-water pool, which is dangerous for people with heat-induced fatigue and hypotension. It's not safe to let me be too warm. So, maybe the wellness center, but no water therapy. We'll have to see. I just know this issue will come up again, because it's Dr. Grubb's favorite treatment.

Sunday, January 18, 2009

So tired...

Break was wonderful. Our trip to Minnesota to visit friends was great. Returning to work was nearly impossible. This week was really hard. I've been so tired and in so much pain. I'm having a lot of trouble driving and moving around. I've also had rough time emotionally coping with the responsibility. It can be really hard sometimes. I may have to reconsider my schedule some more, so that I won't have to do as much driving. I'm not sure how to do that, but I'll just take it as it comes.

I'm so tired all the time now. If I don't appear tired, I'm either faking it or on pain meds...probably both. I know I haven't written much, but everything's been really tiring lately.

Medically, I have an appointment with Dr. Grubb's nurse in Ohio on February 2nd. Also, I had a DEXA scan to check on my bone density, but even with the vitamin D and calcium supplements, I don't expect it to be better yet.

Actually, none of my bone or joint or muscle pain has improved at all. It's clearly gotten worse. I would love to find an Ehlers-Danlos doctor to help with that.

In the long term plan, I don't know when I'll be eligible for re-fusion surgery. That's just a waiting process, nothing I can plan for yet.

In addition, I had an emotional breakdown this week, and pretty much lost it. I feel like it could happen again at any time. This is just not manageable right now.

Of course, my mom, dad, Rob, and Gus have all been so supportive and helpful this week. I'm glad I don't have to do this alone. Because right now, every time I'm alone, I break into tears again...not just nice little tears like in the movies...but horrible, ugly, loud, sobbing tears.

Okay, I'm done for now, and in tons of pain, as always.