As many of you know I started school a few weeks back. This has been extremely exhausting for me as I am going to school 5 days a week for the first time since high school! This may not sound like a lot to many of you, but I need the 3 day weekend to catch up on my sleep. I don't go out on Friday's or anything like that I really need that extra day to regenerate! I am also taking much more difficult classes than I have in the past. This has proven to be a lot of work for me and caused much stress! I am an overachiever and have gotten all A's with only 1 B (which I am still bitter about!) in all of my college career. I am taking both neuroscience and anatomy and physiology of the speech and hearing mechanisms. These are extremely involved classes with tons of memorizing! I need to convince myself that for the sake of my health that I need to not stress so much and realize a B is not the end of the world!
Health wise I have not been doing overly fantastically. My headaches and neck pain have been getting worse. These are probably due to the Chiari and related conditions that go with that. The surgery in December helped with my Chiari symptoms, but they are definitely still here! My symptoms tend to cycle, so I am just in a bad cycle right now. Sometimes these cycles can last weeks, sometimes months; only time will tell how long this one will last. My energy levels have been low and I have spent a lot of time in bed reading books and watching movies/ youtube videos. I am hoping this is not a long cycle though!
My wrist is still doing very well and I have next to no pain! I am hardly wearing the brace at all anymore because it doesn't hurt and I just don't remember to put it on! I have a prescription for occupational therapy, but I am scared to go because I don't want them to hurt it more! They will not understand EDS and may cause more harm than good because of their ignorance. This is what happened with my knee a few years back. I haven't decided what I want to do with that! I do still have a gigantic bruise, 2.5 weeks out, on my left forearm where they tried to start on IV and my vein blew. I am prone to blowing veins and bruise very easily due to the EDS. It looks like someone is beating me up, but thankfully it is starting to fade now!
I was riding the recumbent bike daily and doing really well with it! I made it through the first week and got up to 10 minutes and was feeling like it kept getting easier and easier. My heart rate was staying between 140-160 which was a little higher than I wanted it to get, but thankfully it did not set off my symptoms! The sad news is I sprained my ankle taking off my shoes yesterday so now I am not able to ride the bike :( I am taking 600 mg of Ibuprofen three times a day to keep down the inflammation and have it wrapped in an ace bandage for compression for the next few days. On top of the wrap I have my stabilizing brace from last time I sprained my ankle in May. This brace provides support and has bars on either side so I cannot roll my ankle at all. Walking still hurts and I have to be careful so that I don't trip. I will probably have to wear the brace for at least the next 2-3 weeks. I am disappointed that this will make me have to start over with the exercising routine, but what can you do?
As far as medications go there has not been too much change. I had tried to go up on one of medications, Florinef, that helps me retain salt and water, which in turn rises blood pressure, but that was not successful. One of the side effects of that medication is headaches, well we know I am already prone to headaches, so we have to be very careful with that med. I am back down to taking it only once a day and seem to be tolerating that fairly well. I am scared to add in more medications because of the side effects! I am very sensitive to the side effects of medications, which is a result of the dysautonomia, so they can really knock me down if we are not careful about introducing medications very slowly! I did add in a sodium supplement. I need to increase my sodium intake in order for the florinef to work better and also to help raise my blood pressure. I don't eat enough though and was finding it difficult to eat enough salt. I add what are called thermo tabs into my pill routine. They have 180 mg of salt each, which isn't that much but at least it is more than I was getting before! I take at least 4 a day and might go to more if I tolerate these well.
The nausea and lack of appetite were gone for a short while, but have now come back with a vengeance! This is just part of the cycles of my symptoms, but it seems as if the nausea and lack of appetite are here to stay :(
I will post those pictures from my wrist surgery later on. I have to scan them into the computer and then figure out how to include them here. Sadly though, my computer died so it needs to go to the Apple hospital to get fixed :'(
I'm sure I missed some stuff, but here is the general update that is long overdue!
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