Let's start with the very best update from me medically and for life in general :) I have a new partner in crime!
Another huge life update for me is that I am working FULL time! Yep that is right 37.5 hours a week :) I am a teacher assistant in a special education setting for students 18-22 years old. I LOVE it! It is so nice to be working and I absolutely adore working with students! If you were to ask me year ago if I thought I would ever be working full time I would have laughed at you because of how poor my health was! Now I am doing it, yes it is tough sometimes, and enjoying every second of it! I am also applying to graduate school for speech-language pathology! If I get into the program I applied to (which I won’t know for a while still) I will start in January. This is another huge step that I did not think I would accomplish in my life because of my health, but there is no doubt in my mind now that I can handle it!
As you can probably tell by the tone of this post so far I am doing VERY well medically. I am feeling great and the vast majority of my symptoms are stabilized by my various treatment methods. My medications have not changed much since I last updated with the exception of getting the GI medication that is not FDA approved. We ended up ordering this medication (Domperidone) through Canada and it has been a complete blessing! I am able to eat with few restrictions and am not nauseated nearly as often. I still cannot eat large meals and struggle to eat out, but overall my GI issues have been greatly improved!
I have had no major injuries or illnesses that have had lasting effects! I had one sinus infection and upper respiratory infection over New Years, but that cleared up with some antibiotics. I do not have any surgeries scheduled or even being talked about! That means we are nearing one-year surgery free!!! This is very exciting and has not happened for a few years now :) I am doing very well after my last 2 neurological surgeries and my symptoms have been greatly reduced. I just had a round of blood work (thyroid, electrolytes, vitamin D, and CBC) along with an EKG to check my heart rhythm and all of these tests have come back normal. I haven’t had many doctors’ appointments, which has been very nice!
I did have an appointment with a TMJ specialist who confirmed that my jaw joint (TMJ) is severely out of alignment and that I would benefit greatly from treatment. The first step in this process is to get a sleep study done in order to rule out sleep apnea. We do not think I have sleep apnea, but it something that we need to double check for before we pursue treatment for the TMD (temporomandibular dysfunction). I have an appointment with a sleep specialist in a couple of weeks so that we can get the sleep study done to rule out sleep apnea and then move forward with the TMD treatment. We are not yet sure exactly what this treatment would entail until we get further imaging and tests done.
I also need to set up an appointment with a physical therapist recommended to me by my geneticist. I cannot see a regular PT because they are more likely to do harm than good in EDS patients. This will help me to strengthen my body and protect my joints from injury. Hopefully it will be able to help reduce some minor pain I have in some of my joints by making them stronger.
I think that this is about all that I have to update on right now. It has been quiet for me medically and I have been busy working and enjoying life with my new partner. I will try to update more frequently, but thankfully there is not much to update on right now! Thank you all for your support and prayers throughout this journey!
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