A Patient Losing Patience

I have not updated the blog in awhile and that is because very little is happening.

I am getting IV fluids at home and the cats are helping. My doctor has decided to ween me off the fluids, which makes me sad but he wants to see how I do without them.

I am working my an endocrinologist who is taking forever to figure out what is going on with me and clear me for treatment. Turns out the adrenal glands just take a long time to respond, which is why this exploration should have started far sooner than it did. I have expressed my frustration to two different doctors. It was the second doctor (Palliative Care) who explained why. Knowing the why helps me process it, why is that so hard for doctors to understand.

I have been waiting to be contacted about getting my booster shot. I finally got tired of waiting and called. I was told that I was not eligible. She told me that only individuals with autoimmune issues were eligible. I told her that I had two autoimmune diseases and am battling cancer. She told me that only the leadership could write the order for me to be vaccinated. I asked who I could talk to and she told me nobody....wrong answer. I told her there is always somebody and I would take care of it. I called the Patient Experience team and they are working on it. Again, my Palliative Care doctor told me that he and my oncologist both approved me to get the vaccine. He said they are actually vaccinating transplant patient and people actively receiving chemo, which is why I didn't get approved initially but they agreed it was critical for me to get vaccinated.

I am currently being weened off the Prednisone, which makes me happy because it is really bothering my stomach (at least that is my theory). My Palliative Care doctor prescribed me some medicine to help because I have been struggling with food since my stomach is so upset. I have good days when I can eat but then other days when I feel miserable. Apparently, the medicine he is putting me on is not covered by insurance. Seriously!?! I approved the pharmacy to order it but it irritates me that they will cover so much stuff but not this. My Palliative Care doctor has made it clear to me that his job is to ensure I am not suffering. I am happy he is on my team. He cares a lot and never makes me feel like I am crazy.

Right now everything seems like an uphill battle. I am trying to keep my positive attitude. Some days are better than others. For example, I ordered a banana split yesterday and was so looking forward to it only to be contacted by my Dasher that the restaurant was out of everything! Really....everything? Now I am boycotting this restaurant. 

However, there have been a few good things. While the Nutty Buddy ice cream cones of my youth are no longer available, I have finally found something close:

The other morning I felt like I was being watched while I slept. Later in the day, I asked my mom if she was watching me. She started laughing and could not stop. It was her. She said she didn't want to wake me up so she just lurked. In other good news, I met with the sleep doctor and she was the first doctor who finally put all the pieces together to explain why I cannot breathe well and fell like I do when I sleep. I wish she had been added to my team a long time ago. 

Mom and I took all three babies to the vet. It was annual visits for two and the third needed a quick check in. Everyone got a good report except we were told, again, that Princess Pancake was a little over weight. She weighs the least but apparently her fluffiness is not good. I told her not to worry about it - she actually eats less than the other two. She is just thick.

For tonight . . . I'm just sayin' XOXO