I have not really been around very much lately and thought I would give everyone an update. I have not worked since September and it has been so hard on me emotionally.. I am in the middle of of applying for Disability , they just sent me 9 different packets to fill out about my various conditions and my work history. As I am going through this though new diagnosis are coming in. Last week I was diagnosed with Ehlers Danlos type 3. I also have to be monitored for brain aneurysms annually because of family history. Tomorrow I am going to see a cardiologist to see if I have an enlarged something or other and other complications due to the Ehlers Danlos. I am also being tested for POTS? I have not even looked these things up because I am so frustrated. I also recently have been diagnosed with Tinnitus and hypercousis but my insurance will not cover any treatment. I think this is all it has just been a huge blur of doctors appointments and trying to figure my pain and problems out. Love and miss you all.
I will be thinking about you. I am sorry you are going through so much right now. Take one day or one moment at a time.
It is also helpful to get copies of your medical records and send them to SS, as sometimes patients get the records sooner then anyone else. Do you have someone that can help you fill out the forms?
Hi Trina. I'm very sorry that you have all of these additional illnesses. i know that one of our members, waterwaves, also has EDS and talks about it on this board in order to educate us. There is also a group for fibro and EDS sufferers. If you go up to the main menu and click on groups, you'll find listings of our groups. I'm not sure how active the EDS group is but it's worth a try. I can't write anymore because it's 6:00 am and I haven't slept a wink and need to go and try.
Hugs,
Petunia
PS: I strongly recommend getting an SSDI lawyer to do this work and represent you. They know exactly what your state is looking for and will get it. Yes, you do have to pay them one quarter of the lump sum that you receive but if they get you the disability faster than you would have on your own, the cost evens out.
Thank you everyone for the comments! I do not have an enlarged Aortic Artery which is great! My heart looks good. I do not have Pots which is good as well. I was diagnosed with Vasovagal syncope. I am supposed to wear ugly weird socks and eat lots of salt. I hate salt so I am going to try pills. I have had a super long day, I was at the hospital for over 9 hours so I do not have a lot to say but wanted to give an update.
Sorry you are getting bombarded with so much. You were sure that there were other things going on, but getting hit will all of it at once is a major blow, I know. You are on the right path, all you can do is see it through. Wish you weren't so very far away! We are all here for you, girlfriend!
Love,
SK
Glad that you got some possibilities crossed of the list today, whew!
OMG, so happy to hear that you don't have an enlarged aortic artery! That is good news! POTS i don't know about but it's good that you don't have to worry about having it as no doubt it's another nasty illness.
Ugly weird socks, eh? Well, you can pretend to be from my state (Massachusetts) and pair them with Birkenstocks. That's quite a popular look in Mass! Well, Cambridge, anyhow. But seriously, the socks and salt don't sound so bad.
Trina so sorry to hear of all the health issues. At least you have been diagnosed. I will say extra prayers for a speedy health treatment plan, ssi disability is usually a pain to get approved hang in there! Sendingbprayers and gentle hugs, jackie
I am so sorry, I know how you feel about all the doctor visits but it is good to know what you have to deal with and why you feel the way you do. Hug , Dallas