Dear Reader,
Is this uncommon imagery? My husband always talks about "pushing the ball forward each day" when he is referring to long-term projects. So I mean that I got some things accomplished today regarding my health.
First, my doctor's nurse had dropped the ball in betting me an appointment with the genetics department. It took several phone calls, but I was able to get an appointment set up for May 2. She did fax all my records to them, so at least that's done.
I saw the cardiologist, and that went well. I learned a lot that I did not know before. She also wants me to see their autonomic dysfunction specialist before I leave. She said their weight list is 6-9 months, but she's going to,get me in right away. Turns out she consulted with this specialist before diagnosing me because my test results were "strange." I had a hyper-reaction to a tiny movement of the tilt table I was on. Apparently this means I have the hyperadrenergic form. The beta blockers are to cap the constant surges of tachycardia. I told her about trying to get off of the beta blockers and the disaster that turned into. She said that was good to know, because it means that the fatigue caused by the near constant tachycardia is much worse than the fatigue caused by the beta blockers. But I have a lot of neurological symptoms that are outside of her expertise, so that's why she wants me to see him. Apparently there are other meds that can be added to the beta blockers that will make things better, possibly.
She knows all about Ehlers-Danlos since it frequently is present when there is dysautonomia. But ... if I do have it, it's not a good thing because the heart valves and other structures are made of connective tissue, so you have a high risk of mitral valve prolapse and other things. I don't know what mitral valve prolapse is, and I hope matters will stay that way!
She also said that keeping my blood volume up is a really important thing. I asked her if she had any tips on how to do it and she said, "salt and liquids!" So ... okay, I'm just going to be truthful because what else is this blog about except making myself see the truth? So, the truth is that I had to grab a snack before I raced to the next doctor's appointment in a different part of town. So, I bought two bags of potato chips and a coke zero and ran out the door! When I ate lunch later I got some french fries! All because I NEEDED the salt! Needed it, mind you!! And they were GOOD! I promise I won't do that again! For a while, anyway.
And you know how I've been talking about about seeing a physical therapist for conditioning training? We talked about that and she said that what I actually need is cardiac rehabilitation. That it would be much better for me than physical therapy. In fact, the word she used was "critical." As in, it was critical that I get cardiac rehab and, even if I could on,y get three weeks in before we move, it would be a huge help.
Then I saw the immunologist. He is adding to my meds and thinks the new protocol can eliminate even more reactions. He is hopeful of eliminating them altogether. I just think, Nah! That's never going to happen and is too much to hope for, but we'll see. I see him again at the end of a April and depending on the resulted, may start me on an immunoglobulin ... whatever that is. Oh, and he said he thinks the swelling in the cyst in my cheek is probably a different issue from the angioedema, but he thinks I should have it biopsied.
So ...I think that's a lot of progress, don't you?
I'm tired, but I have to go out of town again to see my counselor and have lunch with my friend. I didn't have to be a "boss" today because my housekeeper didn't come in!oh well, you can't make someone want to succeed, can you?
Till tomorrow,
Lisa
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