Saturday, March 23, 2013
When Can I Feel Better?
Well....Where do I start. Yesterday was pretty crazy. Mom went to pick up my medicine at the pharmacy. She should have been able to get my new sleep drug and my allergy pill. Well the insurance won't let us fill my allergy pill. I am all out!! We are out because we upped my dose two two pills daily. They needed some authorization for me to get meds. This was already done but someone says they never got the authorization! So around 4pm on a Friday afternoon. We were trying to sort things out. They sent one fax in and the insurance denied it! So again they sat on the phone with insurance for an hour and at 7:30 they got it done but it didn't matter because no one was there for it to be done!!! The doctors couldn't do anything for us and we we're told to come in first thing in the morning. We did just that. We actually have quite a decent plan. I am put on antibiotics and steroids. Even though we didn't want to do that because of my CT scan we have no choice. I was put on high dose of steroids so I need to take three pills a day of the steroids and antibiotics. That means I took 5 pills this morning! It is supposed to be hard on your stomach but I have never had a problem with it before. Today I took the pills and an hour later I was in a lot of pain. So I did a feed and took nausea meds. That helped a lot! Anyway the rest of the plan is to continue with my CT Scan on Monday. Pray that my allergy pill will be approved Monday. Then Thursday we get the results of my immune level testing. If it is still really low and has gotten worse we will make a referral for me to see an infectious disease doctor. I got diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. It is the closest diagnosis to my situation at the moment. This is how I will get into the infectious disease doctor when needed. So we really don't think that that syndrome is our main problem but we have to have it so when I do get the referral I can get in. It was an early morning today getting up for the doctors because I started my new sleep pill last night. It didn't help me go to sleep but once I fell asleep it was amazing!! I slept through the night without waking up. I fell back asleep this afternoon while the boys went to a friend's house to play. I found out a really cool trick yesterday!! You can plug headphones into your g-tube button. It is actually really funny. It doesn't make noise though which is quite depressing. I'm helping Mom make a video about Tyler and his medical journey. So stayed tuned for that one. With that video I will also post all the links to the other videos that have been made about me, Tyler, and feeding tube awareness.