Wednesday, March 10, 2010


As I discussed in the last post, I've needed to reassess my situation, based on the fact that my surgery will most likely not be this spring. (I haven't yet heard anything final from my nurse at TCI or Dr. B...I'll let you know when I do hear something final.) I am determined to not let this discouraging news paralyze me.

So today, I would like to write about what my new plan for the next months of my life will be. Without a plan, it's easy to lose hope. But with it all written out, I can know that I am on track for a determined future.

First, I need to hear from TCI, of course. I need to find out what bone density numbers I should be aiming for, so I can know how soon I should plan on having my next DEXA scan. Also, I'd like to ask them for a prescription for a new CTO (cervical-thoracic-orthosis). I haven't been able to wear mine, ever, because it doesn't fit right. I'd be interested in getting either an Aspen CTO or a custom CTO. This may allow me more upright time during the day until I can have surgery.

Next, I made an appointment to see my endocrinologist. I would like to discuss several things with her. First, I'd like to make sure that she is willing to extend my Forteo treatment until surgery (and for at least 3 months after surgery, to allow adequate bone growth after surgery). I'd also like to find out if she has other recommendations to raise my bone density. I'd love her advice on specific exercises I can do or any dietary changes I can make. I am also curious if there are any other supplements she can recommend or if she would recommend a limit on the amount of salt I take in each day.

Also, I have made an appointment to see my POTS specialist. I need to see him yearly. I would be interested in his ideas on how to manage exercise with the extreme heart rates endured by my body.

I also need to get a new local cardiologist to monitor my bicuspid aortic valve and valve leakage problems. I need a new echocardiogram as well.

Dr. F recommended that I try Myofasical Release. However, I have yet to find any doctor that practices this within the confines of evidence-based medicine, so it is not covered by insurance, and I am not really interested in it at this point in time. I know that physical therapists have other therapies to offer that may be of benefit (like laser therapy). Unfortunately, only myofascial release was recommended at this time.

I have gotten orthotics for my shoes. They are extremely uncomfortable, but supposedly, that means they're working! If they were all squishy and gel-based, they wouldn't be doing anything for my sagging arches. Mine are made of cork and leather, and they are serious business. I think I am gradually getting used to them.

Since I got my bone results at the beginning of March, I have started two things: I've begun nightly exercise, no matter how terrible I feel. I can tell that I am stronger already. I'm following my own exercise plan, based on the equipment I have available, and the ridiculous number of exercises I've learned in my year of private training and multiple stints of physical therapy. But I really have to base the plan on my body's abilities for that day.

I've also reduced my salt intake by 66%. I'm now taking only 2 salt pills a day (instead of 6). It's a challenge. I've added Gatorade, and I think I'll need to add more. I just may chug Gatorade all day. I'm wondering if I can cut the salt pills in half, so I don't get such a megadose of salt. Just a little kick to keep me going. Then, maybe I could take them more frequently and not zone out so much of the day.

Besides that, I also plan to take a Spanish class at the local community college this summer. They offer a blended course (half classroom, half online). That way, you spend half as much time in the classroom. And classes are offered in the evenings. So, it would be a real possibility for me. It might be overdoing it, but I'd really like to do this.

So, that's the plan. I just need to hear from TCI for confirmation.