I guess you guys are due an an update on me and my situation. When I start getting phone calls along the lines of "How are you? What's going on with the diagnosis?", I know I am overdue a personal update. After all many of my readers are my good friends, who rely on this blog for the latest in my medical woes (it saves me repeating myself!)
- I finally got my medical records from the cardiologist. It only took about 5 weeks.
- I have been trying to get into the Dysautonomia lab in NYC for extensive dysautonomia testing, which my rheumy fully supports. This place is harder to get into than the Freemasons! They already rejected my prescription from the Rheumy, saying they need more information on my symptoms -but not from me (who do they think experiences the symptoms, Barack Obama?). So I am off to see #25, so I can give him a list of my symptoms and history, which he can then re-package and send to the lab. It is completely ludicrous.
- We had the Middle school IEP meeting for Joe (Middle school! Bloody hell! I'm not ready!). It went well, but it was a bit disconcerting to see the amount of backup I got when I asked for an aide for him. No fewer than FIVE (5) of the people who work closely with him nodded emphatically and said he would need a full-time aide in middle school. I am grateful for the support (and of course we got the aide). But now I am kind of terrified of middle school. And Joe will hit the roof when he learns he will have a 1-one-1! Too bad. He will definitely need it -at least for the first year.
He is going to be in a co-teaching class: A mixture of GenEd and SpecEd kids and two teachers. One SpecEd and one Gen Ed. I think this will be a good setup for him.
- Grace turned 9 in May. She is halfway to (official) adulthood now. Mother of God! I'm not ready for this!
- Guys may want to skip this one: I have been feeling especially shitty of late. Seizurey, headachy, numb-footy, unsteady, interspersed with short periods of feeling like my pre-seizure self. I think a lot has to do with the fact that my cycle is completely messed up. I have been trying to get in to see a new gynecologist, recommended by the rheumy, who I trust. However this new doctor is somewhere between the Freemasons and the NYC dysautonomia clinic on the scale of 'difficulty to get into" I have considered going back to my old gyno, but I have rejected this notion on grounds that she is a bitch.
- (Yes. I am a bitch too. I have never denied this)
- I stopped taking Limbrel. This was kind of an unconscious decision. I forgot to take it for a day. When I remembered that I had forgot, I realized that I was feeling marginally less bloaty, so I went right on forgetting! After a(nother) day or so, the severe right-side abdominal pain I had had for a month, which I had thought was an ovary, started to abate. It has not recurred. The rheumy says it was the right decision. Another med bites the dust!
- My hands are slightly better, but I think this is because the weather has been warmer.
- My good friend Wynda, who left this area about 10 years ago, returned for a visit and it was lovely to see her. She was amazed (naturally) at how big and interesting the kids have become. When last she saw them, there was only one, and he was just an eating and pooing machine back then (albeit a cute one!).
- I have not lost the 10 pounds I gained while on Limbrel. I went back on Atkins for about a week, but ...Man! -steak aside (and I love steak, but it is expensive); it is so bloody BORING! I don't know how I did it for so long...
I'm sure there is more, but that should be enough to be getting along with.