Hi all! Glad to see you all again!

Just a little update. Still living on the east coast, and still struggling. I feel about ten times worse out here than I did in California. It has been raining often, and I definitely notice the symptoms on those days. Not sure if it is the humidity, barometric pressure or a front, but I feel like a completely different person than I did in Cali. I am pretty sure I'm going to move back, even though I so badly want it to work out here. There are better docs here, my family, job opportunities, school opportunities, and well, I'm here!
But I feel so horrible in this weather. When in California, despite being sick, I still felt like I could function at a level that would allow me to work and go back to school. Not in comfort, that's for sure, but I could continue fighting to achieve my goals. Here, I feel debilitated. I can't go outside for more than one minute without my heart going crazy, extreme dizziness, etc. I'm finding that I'm completely losing sight of ever working in a field I want and going back to school to become a veterinarian. It's hard to imagine that just two weeks ago I thought I could do it. What a sudden change!!!! I have become much more depressed, lethargic, and worthless-feeling.

I have no idea what to do. I feel so strongly that what I need to do to feel better right now is go back to Cali. But I also want better doctors and I want to be near my family. Plus I know I could go to a good school here. I just worry that the best doctor at Hopkins won't be able to do much for me and I'll be left feeling this way, constantly wishing I had gone back to a life I knew I was happy and for the most part, fairly comfortable in.

I have no idea why the weather is affecting me this way. It is a DRASTIC difference in my symptoms. My heart is a lot more unstable than ever before (didn't think it could get much worse!), and the pressure in my head makes me feel certain I will die. I can't imagine that something so unbelievably and indescribably uncomfortable is not life-threatening. I am completely unfunctional on the bad days here, which are frequent given this weather!
I have also noticed that my previous symptom of pressure/fullness in my abdomen has turned into, since being here, a huge abdomen. I look seven months pregnant! I am not a large person, so it has become incredibly noticeable. No idea what is going on, and how this progressed so quickly, since, you guessed it, moving here!!!

Don't give up on the doctors. I was feeling that way too, but after being seen at the Cleveland Clinic, I have much more hope for my future than before. It is so frustrating to go to doctor after doctor and be told "I have no idea." But you just haven't found the right doctor yet.

As far as the insurance, I can completely understand! Before all of this happened, I was working for a mortgage company that closed their doors overnight. Our group insurance was cancelled because it was self funded by the company so there was no way to just pay for the coverage through COBRA. I found a job fast, but could not get insurance for 90 days. They had a pre-existing condition clause unless I had continuous insurance for the 2 years leading up to enrolling in their policy. I had to pay $600 per month for "catastrophe" coverage for 3 months until I could get into the plan at work. Before this, my conditions were endometriosis and migraine, so if I had a lapse in coverage, these two things would not be covered. Dealing with insurance can be painful! Maybe, for the benefit of your health and your check book, you should move back to California. I am sure there has to be a good doc there since the state is so Large! Good Luck, and don't give up.

Hi Gracie - Sorry you're still having so much trouble. I can relate to your problem. As I said before, the weather does affect my symptoms. It's been pretty lousy here on the East Coast with the tropical storm and rain. I too have been very symptomatic. Not sure if that's what is going on with you. It's supposed to get very nice the next few days - maybe you'll see a difference. I hope so

Hi Gracie,
Sorry to see you're having such trouble adjusting to the new climate out here. I know how it is to be dealing with all this overcast weather. As for drs, I began seeing a new one yesterday, who sees quite a few Dys patients in his practice. He gave me the prescription for Mestinon that I've been eager to try for a year now, though I may have to wait on taking it since I also have Celiac Disease and the Mestinon may not be gluten free. Which brings me to my next point:

Have you ever been thoroughly evaluated for Celiac Disease? Your abdominal bloating and pain and dizziness sound exactly like me, and I have Celiac. In the beginning, before I got on the gluten free diet and learned how to control the disease, I was dizzy all the time, with severe vertigo attacks and weakness and a feeling of being generally ill, as well as having a huge abdomen. I still struggle with those things, though the GF diet and having a proper diagnosis has improved the condition somewhat. Diagnosis would consist of blood work done by a Dr who actually knows Celiac (many of them don't) and a biopsy/endoscopy. PM me of you want the name of the latest Dys dr I'm now seeing, and/or the name of the Celiac doc.

Gillian

Hi gillian -
Glad to hear that you finally got started on the Mestinon! I remember you mentioning awhile ago that you were interested in it. Let us know how it works out. Have you noticed a difference yet?

And even better, congrats on the dys doctor!!! Which one did you decide to see?

I think I'm planning to move back to California. I would love for this area to work out, especially because my family is here and there are better doctors, but I am sooooooo much worse than I was in Cali that I just don't think it is worth it for me. Before I get settled and "stuck" here, I think I still have a chance of going back to a life that allowed me to function and have hope. Being here for two weeks, which I haven't adjusted to in the least, has caused me to become very depressed and lose all hope of every living and functioning.
I have nooooo idea in the world why I am so heavily affected by this weather, but it's the way it is and I can still do something about it.

Anyways, celiac is a good thought, and I don't think I have been tested. But I sure will when I get a new doctor!!! I seriously look like I am about to pop out a fifteen pound baby. And worse, I feel like it!!!

I will let you know if for some reason I do decide to stick around the area. Everything in my body is telling me not to, literally.

I sure hope your new med is working out for you!!!!