Thursday, November 20, 2014

November Update

I'm so sorry for the delay in getting back here! I've been so sick! Not from my chronic illnesses, but from an ordinary (albeit, horrible) cold! It lasted for over two weeks and three weeks into it, I'm still having coughing spells, especially at night. Thankfully, I think the worst of it is over.

In my last update I talked a little bit about my follow-up appointment with Dr Kendall. I received the notes from the exam, so I know a bit more about things. For one, I now have a list of all of the supplements (mito cocktail) and their dosages that she said I could trial. I'm going to start a few at a time. I'm starting to research which ones would be the most beneficial for me based on my symptoms.

I also received and have already had blood drawn for the whole exome sequencing. I had a bit of difficulty in figuring out which lab to go to. The blood is drawn at a local lab then sent to Genedx. After exchanging a few emails with Genedx, I was given the name of the lab that would handle the draw. The only problem was, when I called them, they'd never heard of Genedx! So, I ended up having to explain it all to the lab technician. My birth father was very willing to have his blood drawn, too, as part of the testing. Now, the waiting begins. Four to six months of waiting. I have done a bit more reading on the test and I don't think the 50% diagnosis rate is accurate, I'm thinking I may have misunderstood Dr Kendall. I believe it's closer to 25%. 25% is still good in my book. I'm hoping that this testing could not only help members of my birth family, but also my children.

I've been having more frequent subluxations and dislocations since I've been sick. The other day, my right ankle dislocated when I was driving! Luckily, I was able to get it to go right back into place. But, boy did it hurt! I'm starting to look around for a Podiatrist who is familiar with EDS. My ankles and feet in general, really need attention. My current foot doctor knows nothing about EDS and it's very frustrating. I've had to wear a brace on my elbow lately because it's been subluxing, too and it dislocated completely once.

It looks like we will have another wedding sooner than we thought. Elizabeth and her fiancé moved their wedding up to the end of May! That's two months sooner than they'd planned. So, we've been super busy getting things done! She's dealing with yet another health issue! Poor girl! It now looks like she may have Endometriosis. She's having some testing done next week. She just can't seem to get a break! I just can't help believe that there's some connection between all of her medical issues. I do know the EDS and POTS are related. But, the hypoglycemia and digestive issues are probably not. I believe I've read that EDS and Endometriosis are related. I'm so thankful that her fiancé is such a caring person. That will go a long way in dealing with being married to someone with so many illnesses. I'm a bit concerned as they will be living seven hours away from here. We still have the phone, Facebook, etc to keep in touch with, but it won't be the same.

I know those of us with chronic illnesses have a lot to deal with, but most of us also have many things to be thankful for. I try to remember that, especially when things get rough.

In case I don't make it back here by next week, Happy Thanksgiving everyone!



As we express our gratitude,
we must never forget that the
highest appreciation is not to
utter words, but to live by them.
– John Fitzgerald Kennedy.

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