Hope?

They tell me I'll by symptom free eventually. But symptom free how? By taking antibiotics for 6months out of a year? By staying at sea level for the rest of my life? By avoiding serious physical exertion? Because that isn't life to me, that isn't "symptom free."

I want to be symptom free AND drug free AND be able to live the lifestlye I want. All Three. I demand that, for myself.

I actually met someone today who had battled lymes for 10 years and has been symptom and drug free for 4 years. Only 1 tiny relapse. And she doesn't even take vitamins anymore. I guess that's hope.

The hardest part...

... is that some days are terrible and some are fine, or close to fine. There has been no miracle upswing. No consistent energy gain. No everyday bringing me closer to my goal. It's just up and down. One good, a couple bad, a couple good, another bad.

It's just so inconsistent. I am not sure whether to think I am getting better or worse or how I can even tell.

If I feel bad, then the lymes is in my blood and theoretically getting killed. If I feel good, then maybe all the lymies are gone and I am getting better. Or perhaps both reactions are just a by-product of the massive amount of medications in my system. I guess only time will tell.

End of the hypothetical rope

Yeah. Today was a bad day. So was Yesterday. So was the day before. I feel crappy. Incredibly crappy. And I feel defeated, like beyond frustrated and well into depression.

the sliding scale

It's weird. Right now, I would be so excited just to have my normal energy back. Give me pills, give me pickline but for the love of god make me feel better. But really, once I feel better I am NOT going to want to be on the central line and once I am off that, I am NOT going to want to be on drugs of any sort and once I'm off drugs I'll NOT want to be taking pills at all.

So there's that problem. But right now, I keep thinking that I'd be okay with taking anti-biotics several months out of the year if it means I can live the life I want. But is that lowering my standards and more importantly... is it even true?

Little victories and Little Defeats

Victories:
- It looks like I'll have the hickman out by mid-December
- they expanded my diet to include "anything" as they are worried I am malnourished
- I am getting taken off azithro and put on some other new exciting drug
- We are getting an infa-red sauna, lymies don't like hot temperatures
- I got moved from 7 days a week of intravenous to 5 days on 2 off... hurrah.
- right now I am antibiotic free... 10 days of system recovery as mandated by said unknown "systemic infection"
- I will someday be able to ski again

Defeats:
- I still have the hickman until mid-December
- the "anything" part is actually quite a small list of "anything" - but I can eat pears now and brown rice!
- the new drug is going to make me nauseous
- nothing bad about a sauna - winning all around
- now I just have to keep myself on schedule
- I am still taking 20 pills a day to help in "system recovery"
- But that day will not be in the next year. I have to stay below 5,000 feet for a year.