Saturday, April 19, 2008


I post a picture of our darling Katie here, because she fights the good fight (in so many ways) every day, always keeping her heart of gold (and very sharp claws)

Windy, blustery, chilly day, filled with harsh light and misleading sunbeams. A tricksy day. After our long day yesterday, it's a good day to stay inside and cuddle up and rest and recover.

It's been a week.

I did not do that great on my test. No problem, I would much rather have gone out with my brother than stayed home and study... I can make up the points; I can't re-do a visit from Matt. With the extra credit points from next week's quiz (which I will MAKE SURE to ace), my test score will be just fine, so I'm not worrying about it. Although I do have to go back to complete all my notes and study materials since I'll need them for the final... darn.

Friday we went to see the specialist for Terri's health problems. I don't write about it very much here, because it's sort of her story to tell. But yesterday was a good step in the right direction and I want to write about it a little. After months of getting nowhere with her regular doctor, and limited results from acupuncture, we made the big decision to spend the money and see an integrative doctor up in Santa Rosa -- an MD who uses regular Western medicine and also whatever 'alternative' therapies that are useful. This office specializes in chronic conditions, including Chronic Fatigue Syndrome and Lyme, etc. Not constrained by insurance-dictated time limits, the doctor did a complete and very thorough interview and exam, and carefully looked through her medical history and how she's responded to various treatments. It took about an hour and a half. It was great. We felt totally heard and validated. We now have a plan, and a guide. There aren't any quick fixes, and the closest thing to a 'magic bullet' is an extremely expensive drug ($2000 per month) that may have some pretty dangerous side effects... but we're on the right path. We're going to fight this thing.

What is this "thing"? It's a chronic viral infection (HHV-6) that is wreaking havoc on Terri's body. Her cells are not processing oxygen normally. Her heart is not pumping effectively. She's exhausted, her immune system is compromised, her sleep is terribly disrupted, among other symptoms. She feels pretty shitty pretty much all the time. It's awful. It's scary. It's unfair beyond comprehension. However, it is not hopeless, as we keep reminding each other.

The new treatment (the first steps, anyway) is to bombard her body with immune-building supplements, low doses of hydrocortisol, and work on sleep. Plus, the drug. The drug that we are considering trying is called Valcyte, and we're looking into patient-assistance programs (really, who can afford $2000 a month???) and are hopeful that she'll be able to try it. The treatment won't be fun -- it causes a viral die-off that feels like a horrible flu, or chemo, for six months to a year. BUT, the payoff, if it works, can be excellent. Some (many?) people experience a full recovery. This is what we're gambling on.

All of this is scary, tiring, expensive and nothing is guaranteed. But I'm thinking of it as though we're stepping into battle -- you have to have faith, and a good heart, and you have to keep at it and never give up. And because it's all for Terri -- my warrior, my bravest heart, the strongest person I know -- I'm willing to give it everything I have. I'm glad to do it. Even while exhausted to the bone and fighting constant dizziness, Terri is her wise, mischevious, loving, gentle, kind and amazing self. I love coming home and having her here every day -- although we will be ecstatic when she is able to return to a normal schedule, I'll miss having her keeping the homefires burning. Absolutely we get bummed about this stuff. Who wouldn't? It sucks. But it's not everything that our lives are about. Everything else is pretty wonderful.

(Except our neighbors. Does everybody else deal with noisy neighbors like we seem to be plagued with??)

So I might post updates now and again. Like I said, it's her story to tell, but it's a large part of my life as well and I'd like to write about it sometimes. Also, I know there are lots of people out there fighting the same fight that we are, and maybe they'll find their way here. If so, welcome!

Today we've been laying low, with just a trip to the library. We found an excellent website that has the best brands of the supplements she needs for half price or less. Her cortisol is covered by insurance (yay!). And something else -- we feel as though we are somehow being taken care of. Somebody is watching out for us. For example -- the doctor appointment was $475. When we got home, Terri had a received a check for that amount -- money she had long ago given up on. Also, her online book business has generated more money than we expected (if you need a place to get rid of your unwanted books, please email me! We'll pay for postage!). There are other examples of how, even though things seem heartbreakingly unfair right now, we are being spared the worst of the worst-case scenarios.

I started this year thinking it would be a good, transformative year. I still feel that. We're going to get through this and somehow our lives will be better than we had imagined. I'm sure it won't be easy. But, as the football coach at my high school used to scream at us during pep rallies:

Who are we??


What are we??


Keep cheering for us.


rachelcreative said...

It's your story too you know :o)

Such optmism and hope and you are the gentle warrior.

I say gentle because I can't compute a trip to the library and tutting at the noisey neighbours with shouting a war cry.

I've thought from the moment of my CFS diagnosis that this is a quiet, gentle fight. CFS throws big punches and I try to sneak up on it quietly and slowly chip away at it's armour.

Thanks for this post. Thanks for sharing. Really. And thanks for commenting on my blog

Daphne said...

Hi Rachel! Nice to hear from you, I've been reading your blog for a few months now... I'll comment more often! Yep, we're over here throwing sucker punches at CFS as often as we can. Usually from the couch. :)

Kate said...

Daphne, my heart's with you and Terri. Let me know if I can help or something (which feels like such strange, empty words since I'm far away and hardly know you).

And let me know about Terri's business...