CFIDS in NYC

Dear friends who read my blog,

As part of my health care and my fight for disability I have started seeing a new specialist. CFIDS specialists are rare finds. When I was younger I had a doctor at Johns Hopkins. He is one of the leading researchers in the country and keeps remarkably busy trying to balance his research schedule with his treatment of patients. Since I stopped seeing him for a long period of time, I would be a new patient if I went back and he is not currently accepting new patients. As a result, I had to go on quite an adventure to find a new doctor.

I saw her yesterday. This is the text I sent out to update a few people on how it went:

"For starters I've officially been re-diagnosed with CFIDS (fucking duh). Every time I get a new doc that happens. So, it has been confirmed again. Still got it. (Conveniently I woke up looking and feeling like hell today: puffy black eye looking bags under my eyes, non-stop sniffling & stuffiness, and my left arm can't hold anything. It's like my body knew what was happening today and wanted to make sure I couldn't pass as healthy.)

The doctor is very kind. She certainly will be a good advocate for me with the disability fight. She ordered two tests that should help prove my case: one proves that I have that heart/fainting thing, one to disprove that I have MS. She took bloodwork, 7 vials. Mostly we discussed my history and what life has been like for me, health wise. I completed a few record release forms so she can get info from my other docs to finish putting together a comprehensive picture of my medical life. After the bloodwork comes in she may add a new medication to my cocktail. We will discuss where to go from here on August 11 after she returns from vacation and sees my bloodwork. She will try to accommodate my living in Virginia and do as much as possible over the phone.

It was crazy being in her clinic. It was a maze of junky rooms and files upon files. Over the 2 hours I was there at least 10 other patients, all women, were in and out getting blood drawn or getting some kind of IV treatment. I want IV treatment. I've never seen so many CFIDS patients. There's a whole community here. In NoVa there's a "support group" via email. And that unscrupulous doctor who doesn't take insurance and charges $800 per visit.

She had signs up for clinical trials and studies. I filled out some paperwork for one that wasn't advertised, but it was studying the cells and genetic make up of us patients. (They pay healthy people $100 to donate their blood for comparison.)"

So that's the latest update. Hopefully this is the beginning of some positivity and changes for the better. 

Real time... Traveling!!

Kevin's friends are getting married today. On a beach on the gulf coast of Florida. I'm pretty sure it's the sunset, barefoot ceremony I've always dreamt of... And I haven't yet met these friends, so I'm honored to be there.

Unfortunately getting there means flying, and flying means a lot of bad things for me. I've flown alone since I was 15. Several flights alone since then. Florida. NC. LA. Bahrain. I've had layovers and missed flights and craziness.

Today I realized in this present health state, flying alone is another "thing I can't do." But Kevin, as always, is making sure to help with every possible thing that could go wrong. Within his control. He can't help how the pressure affects my swelling and pain...but he soothes me. He holds me still during the bumps that cause so much extra pain. He handled check-in. He carries the bags. He remembers to walk at my pace. He helps with my sweater on and off, zippers, and all. He body blocks other people from bumping me. He asks my every pain and symptom and ache, so, as he says, he knows how to help me. In all the hustle and bustle of traveling, his still on top of pill-time for me.

Without a complaint. Without a cross word to me. He doesn't do these things begrudgingly. He does these things with a smile, with lots of "I love you's" and forehead kisses.

We are on a layover now. Before our first flight I was terrified. So many things could be bad flying in my condition. But now I feel relaxed, I feel much more at ease. I'm learning to trust that he's got it. I am so used to being in control all the time, but I can't be anymore. I can follow his lead and it'll be okay. He's got this... And me.