Sunday, July 17, 2011

Living the REMISSION Lyme Life

Yesterday was my wonderful Lyme appointment. I say wonderful because one thing didn't happen. There was no Grab & Jab. That happens July 29th. I say wonderful because of something I read after I left his office.

So at each visit, I go into the waiting room. I sign a piece of paper that says I'm there, what time I arrive and whether I want treatment or not. It's just a cover all our behinds kind of thing. When I'm there for a follow up, I have to fill out another piece of paper that asks what specific improvements or problems I've had since my last visit. Also have to say what specific issues I want addressed and any medications to be listed. I'm taken back for my temp, weight, blood pressure (sitting and standing) and pulse Ox. These are typically all good. Though I did have problems with my temp for a while (being way too low .. and occasionally too high) and my weight was significantly too low, but we've worked out both of those issues. I'm brought back to the waiting room while I read a new set of policies just put in effect and wait for my hero to peer his head through the door.

I was sure to get a smile on his face because while he'd never admit it out loud, I know I'm one of his favorite people. After all, he took me to congress and our picture was in some journal together (though I did never see it). We sat together to see our first viewing of Under Our Skin. So a warm smile from him when he thinks about how far I've come in four plus years is very much expected.

He opens the door and peers his head. Before he could even get my name out, I've bolted out of my seat. We walk back to his most comfortable office where I proceed to tell him that I forgot my cheerleading outfit (which doesn't fit anymore ... :( but symbolic b.c I am his biggest cheer leader) and he kindly reminds me that I used to be the person that always came in dressed crazily. I knew he meant that he could always count on me for a laugh.

We sat down and I haven't been in since December. So he wanted to recount how I've been. I tell him first how well things have gone. I've only been on antibiotics once for Bronchitis since our last visit and those went well. Then, I had to mention the symptoms. I mean I was there to tell him about my symptoms. Well I chart ALL of my symptoms in this calender on google. The problem was that my printer wasn't working and my husband wasn't home to fix it. So I had to rely on the good ole memory banks. That's hard to do sometimes, but I knew the few problems I wanted to discuss.

I told him about the few headaches I've had (which I'm sporting one right now actually). I told him about the problem sleeping sometimes where I wake up from a vivid dream and struggle getting back to sleep. And then there are some nights where I sleep very little. Now those of you that really know me know that in days past I could sleep 12 hours without waking once and at the end of the 12 hours honestly I could wake up about an hour and go back to sleep no problems. I talked about my staring into space and not really being there and spacing out moments. There was one other too private thing (which really isn't that private, but I just don't feel like discussing it on the blog) that I discussed with him.

He dug through my chart and reminded me of some serious symptoms I had in the past. We smiled b.c I had gotten through them. We discussed LDN at length. Discussing that it could possibly be the cause of some of my symptoms, but more likely than not it was something else causing the problem. We discussed how in the past my Progesterone levels were low and this could cause every single one of my problems. So on the 29th, I'll go and have those checked out. We discussed some mineral deficiencies. I've had problems in the past (and probably still have problems). These medicines make me feel so extremely nauseated. So I tend not to take them. So we're working on solutions for that.

We discussed our mutual fear of Lyme creeping back or getting a new infection over every little small symptom. Though I told him I try not to let that anxiety rule my life as it did two years ago. I told him I was in the paper. Oh did you not know? Google News of Orange: Or better yet. It won't be up long b.c they change it weekly, but a picture of Whitney & I were on the front page of News of Orange.

Here is the photo:

Anyways, in the article you will read what it says under it:

"Both women suffer from Lyme disease, though Allton has already completed her treatment and is almost entirely in remission while Corn is just starting her antibiotic series. Before she could start, Corn had to build up her strength by taking supplements.
Erin Wiltgen / News of Orange

I wanted to share this with you because ... it's official.

All indications are that Lyme remains in remission potentially even eradicated (though concerns remain that it could return or I could get a new infection). Dr. P said all of this based on my clinical symptoms just as he diagnosed me clinically. However, once my blood work is done and comes back (which should be back by the middle of August) we will know for certain that my symptoms remaining are hormonal in nature and not from Lyme.

Can you see me jumping for joy? I'm THRILLED.

1 comment:

Krystal J. said...

WOW!! THAT IS SO AWESOME!!! I bet it is hard to contain yourself, after waiting so long and working so hard to get to this point ;o)