is it possible?

Is it possible that she will be one of the lucky ones? When I talk to people about her illness, which is pretty rare these days, I always add that she is one of the lucky ones. Relatively speaking, things are going extremely well. Her life is practically normal given the fact that she no longer attends regular school and is highly medicated. I really can't and won't complain. She is unbelievably social - so much so that I lose sleep, so I guess we're normal! We're counting our blessings and, as always, remaining hopeful.

and speaking of being medicated...

See the highly medicated box? I almost bought this for her yesterday but didn't for only one reason. You may think that the reason is that it's kinda, sorta odd to put a pillbox holder that is sparkly and has "highly medicated" written across the top into the hands of a 17 year old. Well, that's not the reason. I didn't buy it because it was $29.00. $29.00! Anyway, it was sized perfectly - large enough compartments to hold her pills, a.m. and p.m., AND the best thing (aside from the fact that it was kind of cute) was that it was small, about 5-6 inches by 4 inches, zipped closed and housed a perfectly sized pillbox for traveling. Call me crazy, but I loved it. (I'm going to have to figure out how to make one of those suckers.)

So, for the medication. Believe it or not, we FINALLY weaned her off of her morning dose of Lyrica. Hooray! It only took five months, but it finally took. She's now on Lyrica at night, 25 mg. She still takes the Pamelor, 50 mg at night, Florinef twice a day, and a multitude of supplements. Dropping that Lyrica was a milestone. No more splitting capsules - Yay!

I sincerely think of you all often and hope you're enjoying life.

Stay happy and full of hope. Until next time.

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Weaning

Jessie went for a six month check today with her primary care physician and the report was good. She hasn't gained too much weight from the Florinef and, as you know, is becoming much more active. We're going to try to wean her at a snail's pace from the Lyrica over the next 12 months. The general consensus is that she will be on Florinef and Pamelor for an eternity, but she may be fine without the Lyrica.

We won't begin the weaning process for another few weeks because we're heading back to Virginia this week for five days and she always overdoes it a bit when she's around friends. We'll wait until her system has a chance to level off after the trip. If she lowers her dose now, we won't know if the side effect is from that or from playing too hard. So it's best to wait. After that, I'm going to decrease the Lyrica from 25mg twice a day to only once at night. If that goes well, we'll see about reducing it a little more after six months at that dosage. It sounds like so little, but we're both very excited to try it.

The doctor asked what we are planning for Jessie's education next fall. I think that the way this has worked out (junior year at home online), a slow transition back will be easiest. She'll only need one more high school credit her senior year and there's a university about 20 minutes away. If we're lucky, she can pick up a few credits there on a part-time basis. That will give us a decent indication as to whether or not full-time college is within her reach.

It's overkill, I know, but as I said, we're going back to Virginia on Thursday for a long weekend. I'll be house/pet sitting. Wes is living there now and we will get to see him. I'm not only weaning Jessie from a medication, but Jeff and I are being weaned from our son. How's it going? I'm okay, Jeff's not so great. He misses his buddy.

I'm holding my breath right now, though, because we may have to buy a car for him. He HAS to have a car and his truck, which is about to cross the 200K mark, is making seriously scary noises. AGHH! I hope it's not too costly because at this point, you don't want to sink $1000 into an already old truck. I guess, as with everything else, I'll count our blessings and cross that bridge if we come to it, right? Right.

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Back From the Holidays AND a Road Trip

It shouldn't come as a surprise to our regular readers that we've been on another road trip. My son, Wes (who moved back to Virginia to attend school - boohoo) and Jessie headed seven hours north after Christmas. After a week of "empty-nester-marital-bliss" I drove up to Charlotte on Sunday, spent the night with my mom, then met Jessie and a friend (who graciously offered to drive Jes to our usual halfway point - thank you very much friend).

The truly surprising thing is that other than being REALLY tired and needing a good night's rest, Jes was fine. She told me that she only had one instance of the dizzy head rush - aka orthostatic intolerance.

It amazes me that she has reached the point that she can spend eight days surrounded by teenage friends, constantly being on the go, and staying up into the wee hours of the morning. Any stranger would take one look at her and say that this girl is totally healthy.

Anyway, only her friends and I know that if she stopped taking her substantial amount of medication, a total relapse would occur and she would be confined to her bed or the sofa.

I thank God for her friends, who don't question that Jes sneaks rest periods in when no one is looking. I'm also thankful that she has friends who provide her with something salty when she's feeling light-headed, force her to slow down to watch a movie, and remind her to take her medication.

That's what friends are for, right?

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A Tiny Hello

Hello...

I hopped over to Living Chronically to catch up with my favorite blogs and noticed that I haven't posted since the broccoli & potato soup incident! That was on November 11th.

Just a little hello. Jessie continues to do well. She had a super busy week last week and needed to rest up all weekend long. But she bounced right back. I'm holding my breath, being cautious, and enjoying the good health she's experiencing.

Wesley's birthday is tomorrow (he's TWENTY and I'm feeling old). As usual, we will have a special dinner and everyone will have to suffer through my rendition of "the day you were born."

Then on Thursday we're heading out again. I'm excited to be house and pet sitting for a friend in Virginia and staying in her house for five days while she and her family are away! It'll be a FREE VACATION! The best kind. Yippee!!

I hope everyone is doing well and if I don't get the chance to post again, have a wonderful Thanksgiving.

Virtual {{{hugs}}}

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Finally...See She Wasn't Making it Up!

We have promising news in the study of CFS. The news will authenticate what millions of patients with Chronic Fatigue Immune Dysfunction Syndrome have been claiming for years. It's an infectious disease. A seemingly simple claim, but so very important to people dealing with CFS.

More importantly, the discovery of the relationship between CFS and the XMRV Retrovirus will, hopefully, lead to more research and an eventual treatment for this debilitating disease.

For a better explanation:

Scientific American

The New York Times

The National Cancer Institute

Encouraging to say the least!

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