Cystic Fibrosis Fatboy — Page 72 — The daily quest to gain weight

A Brief Pause in Memory of Conner Reed

June 28, 2010

I’m about to go waaaayyyyy out of my style and comfort zone on this one, but I want a record of this because this is worth remembering. Beautiful first found this site as they were bringing Conner home, practically Hospice-ready a couple of months ago. Thursday night, he lost his fight, and I’m sad even though I never knew him or his family, nor did I read his whole story.

I read of his last day this morning and how he went out with a final meal of a champ after so much suffering:

Conner asked for an Otter pop, he ate two. Then he wanted watermelon and he ate a slice, he wanted mini marshmellows, and ate alot, and then finally a banana. His last meal on this side of heaven. Such a great menu for him…

I am sad because he suffered. I openly cried sitting at my coffee table reading the story of a heartbroken mother recalling the last 24 hours. I was sad because I had a glimpse of what my parents went through nearly 30 years ago.

I rejoice because he has a perfect body now and is running around with lungs and limbs like never before.

Happy “new birthday,” Conner Reed Jones. Say “hi” to Jesus for me.

Collect Sharps Containers and Play with Needles

June 28, 2010

This entry is part [part not set] of 19 in the series What CFers Do

Biohazard by ~radioACTIVE01

I have three Sharps containers in our house. One is under the upstairs bathroom sink. One is next to the couch for my colistin needles, and we have a spare in the box in the closet. Before I got my port in 2006, I’d never had a Sharps container. Home health nurses would come over to draw my peak and trough blood levels for Tobra and always wanted to know where my container was. Why in the world would I have a container? Now I know.

I pretty much only fill them up when I’m on IVs because I really enjoy my showers, so I reward myself every other night by de-accessing my port before bed and getting a good night’s sleep without any hot, sticky window or unconscious discomfort from having a friggin’ needle sticking out of my chest. Beautiful gets me up extra early when she does, I take my shower while she Facebooks, and then she accesses my port again for another two days of treatment. The site gets a tad sore by the end of two weeks, but I personally feel like it’s worth it for the quality of life of showering and having a fresh dressing every other day.

[Read more…]

Update on Testosterone Replacement Therapy

June 27, 2010

A couple of months ago, Aetna Specialty Pharmacy warned me that they were no longer going to be able to acquire my testosterone cypionate any longer. It’s not the first time they have told me that, so I didn’t worry about it… until I ran out and I had to scramble to get some other way to get my hands on this life-changing juice.

The quick background story on why I need testosterone therapy is that CFers are now known to be notoriously low with levels, though I haven’t researched why. One day at clinic I complained of lethargy and they did a testosterone level blood test and I came up way worse than an 80 yr old man. It was basically non-existent. No wonder I was tired. This is my second post on the subject, so for more, including a video of Fatboy, head over to Fatboy Gets Juiced Up – Testosterone Injection.

The issue was that I was prescribed 200 mg/mL dosage, so I was doing 1.5 mL every other week to come up with 600mg per month. I called Pharmaceutical Specialties (PSI) because they handle a few of my other things to see if they could get their hands on it, but they also came up blank, but they did find availability of 100 mg/mL and gave me the NDA number (like a serial number for meds) to check with Aetna one last time.

[Read more…]

Bumps in the Road

June 26, 2010

Back in March when I started this site, I really wasn’t my normal optimistic self that it was going to last because I didn’t think the weight that I had just gained would take. It never has before, so I didn’t have any reasonable expectation that it would this time, other than having hopes that I was going to use sheer grit and determination that I possibly hadn’t given it before. Besides, creating a site and getting some readers (or a lot of readers is even better) creates accountability. If you want to be sure you do something, tell the whole world about it and see who calls you out on it when you slip, I say.

I decided to look back at my stats archive that I was keeping when I first began the site, and I’m glad I’d been doing that. I don’t miss doing all of that work now, because it was a lot of work, but I’m very pleased to be able to remind myself of where I came from on this journey.

A little weight history

Since high school, I’ve always bounced between 108-115lbs. Nothing ever seemed to make a difference one way or another on weight gain or weight loss that I was aware of, other than a few nice days on Prednisone that would take me up as high as 118 for a day or two. I’d “write home about it” and then the weight would be gone again, back down to 113 or something.

[Read more…]

A Brief Pause in Memory of Conner Reed

June 28, 2010

I'm about to go waaaayyyyy out of my style and comfort zone on this one, but I want a record of this because this is worth remembering. Beautiful first found this site as they were bringing Conner home, practically Hospice-ready a couple of months … [Read more]

Collect Sharps Containers and Play with Needles

June 28, 2010

Update on Testosterone Replacement Therapy

June 27, 2010

A couple of months ago, Aetna Specialty Pharmacy warned me that they were no longer going to be able to acquire my testosterone cypionate any longer. It's not the first time they have told me that, so I didn't worry about it... until I ran out and I … [Read more]

Bumps in the Road

June 26, 2010

Back in March when I started this site, I really wasn't my normal optimistic self that it was going to last because I didn't think the weight that I had just gained would take. It never has before, so I didn't have any reasonable expectation that it … [Read more]

A little weight history

Time Elapsed Since IVs