About Me

My photo
I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Wednesday, June 17, 2015

The Middle Aged and the Restless

About 2 months ago I was getting IV therapy, but now I'm not. My PCP is out for medical reasons and the doctor that I saw in her place had absolutely no idea what to do with me. She sent a script in for 1 treatment (with only part of my treatment) for one time. I was pretty upset but I took solace that my doctor would be back in June. I ended up not getting IVs because the pharmacist noted the script was incorrect b/c it had Vitamin K in it and I'm on warfarin. So they wanted to make it with out the Vitamin K; but the doctor did not call them back. That's not all. The doc also prescribed me a new pain meds b/c my old ones don't help much anymore (and I was already take the max. dose)... any way she prescribed it for 400mg but they only do a 500, but the doctor never called them back to correct it (after she had been notified and asked to fix it). So I called to find out if they were scheduling for my doctor and was told she would be back sometime in July.

I called again a few days ago and they say she won't be back until September. SEPTEMBER.

I'm angry. I don't want anyone to jump through hoops for me, but I do think the doctor filling in should be doing more. With out my IVs I am exhausted. My pain feels worse, although I guess I could just be that tired. I don't know anymore. We just got back from a camping weekend, which was a lot of fun. I don't think anyone notice how tired I was. Maybe they did. I don't know.

I enjoy making memories with people I love, so I usually put my pain or fatigue on the back burner to do it; so if I cancel I'm feeling really bad. I'd invite people over but my house is not clean enough and my yard is a freaking jungle. My husband is having his own issues with fatigue and will be going in this week for a sleep study. I hope he gets help one of us should have energy.

This weekend my daughter is coming to visit for Father's day, and think I'll need they wheel chair more b/c of the fatigue that the pain.