Camping in Cook Forest 2016

It's been a while since my last update, I've just been so darn tired.


So in my last blog I discussed my NTM bacteria's, and my experience with Amikacin. They gave my Cipro after that, but oddly enough I had a reaction this time. I've had it before but I think the other antibiotics in my combo made it something I could not tolerate. Two weeks ago my blood work indicated that I needed a blood transfusion. My primary care doctor was out of town, and I decided to just go on my already planned vacation. I did call one of the doctors at NIH, and they suggested that I might have a tedizolid toxicity and that I stop taking it for a week and then get retested. So I went with my family; Frank, Kate, Kearie, Mary, Scott and Seth. We had a blast, it was relaxing and fun and exactly what I needed to get out of the funk I had fallen into. I'm sick of feeling sick. I haven't felt like my self in about 10 months. I had gotten depressed over it, and our vacation reminded me of some things I had forgotten. Thanks to my family, this trip was relaxing, refreshing and most of all fun.

Our car broke down on the way home and we need to buy another one. My mood is better, but I'm still not feeling so great. I put in a call to my primary doctor today, who should have me results from the last blood work by now, and hopefully a suggestion on how to help. At this point my last option is a blood transfusion, as far s I know. She may have another option, fingers crossed. I get IV therapy once a week/every other week so I know the place where I would be getting the transfusion. Additionally I have family who have had this done, but I'm always a little nervous about getting a new medicine or treatment.

In other news, my daughter is home visiting for her summer vacation! That has helped my mood too and I'm excited as we are closer to her graduating and moving home. She'll be moving back in and getting a job in the area (hopefully) and attending college in order to get the business class she needs.

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.

It's over

So for those who read my last blog entry you know that we had court on Thursday. Everything went well, and the birth mother gave up. She was very upset and said that she was doing this for Kate. No matter what hard feelings she may have for us; she put Kate before all of that. It was a great day and afterwards out family and friends went to Cracker Barrel to celebrate it all.
The next step is to wait for 30 days; the amount of time in which the BM could appeal, and then file for the adoption date. We are all so happy...

Also this weekend is my father in-laws birthday and as everyone knows Father's Day. So we have a pretty packed weekend. Kate has been invited to go camping with her brother Jesse and his family on July 4th week end, and I'm excited for her! She has never really been fishing and it sounds like he is going to teach her. It is just awesome that they have connected again, Kate missed him terribly. I'm not sure if my doctor will be ok with me going camping or not, so I guess we'll see...

This past week I started the Carnitor 330 3x a day, so I'm anxious to see if it has helped or looks like it will. I get bloodwork done every Tuesday so hopefully by the end of the week we'll know something!