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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Hello Friends

Just a quick hello. Jes and I returned last night from a weekend visit to my mom's. We had a great time, eating strawberries and chocolate, watching movies (such as the one above), lunching, and even a little shoe shopping - pretty nice, huh?

Jessie is doing well. On the way back last yesterday, we stopped off at the BCBG outlet to shop for a prom dress. What felt like 50+ dresses and no decision. I think she gets her decision-making ability from her mom - poor thing. She's been living so "normally" lately that we're able to enjoy extended time out as long as we bring along salty, gluten-free treats.

We found little snack bags of salty peanuts at Sam's - perfect to keep in the purse. The small bottles of Powerade also tend to tag along as well as Kind bars (fruit and nut are SO good).

If you have orthostatic intolerance, what do you like to take along as your safety net?

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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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Another Brief Hello

Jessica is continuing to do well. We all hold our collective breaths and keep our fingers crossed and say our prayers.

I've made a little executive decision to cut back on her Lyrica. She's currently taking Lyrica, Pamelor, and Florinef along with a ridiculous amount of supplements. Pamelor is for insomnia and migraines. Florinef is for the neurally mediated hypotension. The Lyrica is for joint and muscle pain. She's been taking it in the morning and at night, so I've cut back to just one dose a day (25mg). We'll give it a week to see if she has any side effects, but I have a feeling she'll be okay.

I think that the lifestyle we've settled on for the time being is the best for her (schooling at home so that she can have a social life). I'm not sure how we'll handle college. One day at a time, right?

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Blogging for National Invisible Chronic Illness Awareness Week

I'm blogging today because it's National Invisible Chronic Illness Awareness Week and one of the most important things for someone who deals with this type of illness is to get the respect and support that they need.

As a parent and caregiver, I constantly have to read about CFIDS to remind myself of what Jessie is going through. Understanding the illness is hard to wrap your brain around from a distance. First hand, I've seen what it does to a person's life - it's truly debilitating.

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