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. 

Being an Athlete//Day 16&17

It has been almost a month since I posted. I've been fighting with what seems like even more than normal. I've had a neurostimulator implant in my spine. I've had a rib "pop out" and be popped back in place. I've been sick with my seasonal allergies and colds. I've faced amplified depression. I've been fighting with my mortgage company to get my house eligible for a short sale (because they think I can pay back $11,000+). I've been fighting with disability because they think I'm capable of working, even though I can't read a page without falling asleep and I can't drive more than a mile. 

This post is long, because I combined a few I'd planned in drafts. So stick with me because it makes up for all the lost time. Please and thank you ;)

Day 16: This isn't a famous quote, but it's something I need during this time. My friend, who I used to coach with, wrote this to his(our) team. It is lengthy but it is guaranteed to light a fire in any athlete:

"Ladies,

The mark of a true athlete is not their caliber of play. It's not how fast they run a mile. It's not their skill on a ball, and it's not the number of goals they score in a season. I train athletes; but never would I expect your performance to dictate whether you are an athlete.

No, the mark of an athlete is not physical, but mental. It's a state of mind. It's that calling to press past what you know you can do. It's the itch you get when you haven't played. It's the desire for respect. Respect is something we are currently not being given by other teams in this league. 

We play this game, on this team, for each other. We play for and with one another, but we unite for a common cause. During practice, we battle hard against our teammates to give them the toughest training they can endure, and then when we find opponents, we can outmatch them because of our dedication. To this day, we have yet to show them what we are about. Saturday, this changes. 

I ask only one thing of you against Loch Raven. Earn your respect. Make them fear you. Warm up as a team. Listen to each other. Pump each other up and prepare for your 60 minutes of war. You are playing along side my favorite 18 people, and all of you are capable of fantastic feats when you focus and play as hard as you can. There is no limit to your success, and no boundary to your capacity - but you yourself dictate whether you win or lose.

The mark of an athlete is something that you earn. It is not given. It is not stolen from a trophy room or conceded in a game. You earn it with your attitude. You  earn it with your teammates. 

Bring the heat Saturday. Send a message to this league. Get a strong, commanding win and send those that doubt our team's strength away. Make them suffer. Make them hate playing against you and want to quit. Make them give up. 

Play as a team and there is not a team in our league better. The person on either side of you is your friend, your sister and your teammate. They are your shield and your sword. Bring all of your aggression to the pitch, and prepare to take that team down. You know the tactics; we've  practiced them. You know how to play defense; be strong and hold your ground. You know to play simple; execute it. You know to talk; so speak loudly and with authority.

Play for each other. Play for the win. Play for your respect."

Day 17: I wrote the following in correlation with the email Aaron sent to the Pipeline team. This more than answers the question about how my life would be different. How wouldn't things be different is really the question...because EVERYTHING is different. 

I do not coach presently. I dream and plan to coach again. But I currently am without a team. I also wish to play again. I went from being a D1 prospective goalkeeper to not playing in college to having 8 knee surgeries and finally to happily playing D-back in co-ed adult rec leagues.

I spent nearly 3 years coaching Parkville United. I coached at Parkville High School for 2 full years: 6 seasons & 3 sports in total. And I coached with Pipeline Soccer Club for about 1 season, though the intent was to be there much longer. I hear from my PHS girls all the time, God love them. I've made 4 of their games this season and they still play as the family I taught them to be. They play with heart and character, and their new coach has fallen in love with them just like I did. The girls are some of my biggest cheerleaders when it comes to getting better. And PSC, despite my short time with them, keeps me on the team email list. At first, it made me sad reading team updates, but I've grown to love it. I feel connected in a good way. I still can text or email Aaron to discuss team happenings and offer perspective on girls of that age. Even though I can't be there, it feels like they wish I could, just like I wish I could. I also occasionally get to talk to my former adult league teammates. Some of them I coached with, some of them were just teammates who became friends. Just last week I got to see one of my former teammates -- and one of the few females I've ever easily connected with. They're far away and in a different world than me, but they're all still there.

During my battle with TOS I've struggled in a major way with my identity. Because my health has robbed everything from me, I've stopped knowing who I am. Sometimes when strangers ask what I do for a living I'll answer coaching, rather than explaining I'm disabled. It's just easier; if I say I'm a stay-at-home-housewife people assume we have kids or are trying, and that's also not a conversation I want to accidentally fall into. But the fact is I'm not a coach anymore. I officially haven't been since April 2013. And I haven't played since June of 2012. I managed to coach during my early TOS struggles. Playing was always out of the question. Not just no playing -- no exercising at all.

I have been an athlete forever. It is one of the core foundations of who I am. Or who I thought I was. I have totally stopped feeling like that's who I am and it has resulted in a deep confusion of wondering who I am, if not what I know.

The inevitable question one might have reading that above paragraph is answered by saying, yes I am in therapy. I'm facing it all as best I can. But to answer day 17's question, EVERYTHING WOULD BE DIFFERENT and I would know who I am.