Saturday, October 1, 2011

Life on Remicade

Well - its been 9 months on Remicade now! It has had it's ups and downs but for the most part - I'm feeling good. It took until July for it to fully kick in. I had to really fight through symptoms such as nausea, extreme fatigue and muscle aches. I lived on mints.....slept about 12 hours a day and stayed off my feet as much as possible. I was pretty desperate in June and did a month of acupuncture to help me get through week 4-8 of my infusion cycle.

The acupuncture was a great experience. Dr. Albertson at OC Acupuncture was amazing. So kind and caring - she really took the time to listen to all my complaints and help me. I went 2 times a week and began to feel a small amount of relief. It was my infusion at the end of June when I think longer term relief began.

I felt great the day after my infusion....and the best part was I felt GREAT for 5 more weeks - all in a row! That was something I had not felt since October - 9 months prior! At week 5 I started getting the same symptoms back....luckily not as bad. I then received my infusion in mid August at the 8 week mark. This one took about 2 days to kick in....then once again I was back to feeling GREAT!

At my follow up infusion appointment with my GI we discussed the roller coaster my body went through in the 8 weeks between infusions. He decided that there was no need for that and suggested that we move my infusion cycle to every 6 weeks instead. That was the best news I had heard in a long time.

The ironic part of this is that I was excited to be going to the infusion center more often! Really excited! The opportunity to feel better more consistently gave me something to celebrate! I did flash back to when I was first diagnosed with UC in 2003. Back then the thought of taking 8 pills a day devastated me. Now nearly 8 years later I'm over the moon to have an IV stuck in my arm every 6 weeks and receive medicine intravenously for 3-4 hours! Funny how life changes!

Life was great....that was until about 2 weeks later I got a call saying Blue Shield had denied the request for moving my infusions to every 6 weeks! WHAT? How can they do that? It had to be a mistake. Did they not see the notes my GI doctor sent them as to why this was NEEDED? Here is where my fight began! I started calling Blue shield - filed a audit request immediately and followed up daily! Finally they gave me the name and number of my audit worker. I thought this was a small victory. Sadly I have learned it is getting me no where. Now 4 weeks later I still don't have an answer.

My 6 week infusion that I was so so excited for should have been 3 days ago! I should be feeling great right about now! No symptoms, increasing energy....NORMAL! But, unfortunately thanks to Blue Shield I have symptoms. Not only do I have the typical nassau, fatigue etc....I also have increased bowel movements, stomach cramping and problem eating normal meals.

Monday is 1 day away...back to calling my audit rep and praying that I can get an answer. Not only do I pray I get an answer....I am praying that I get the answer I need! The approval for my infusions every 6 weeks!

No comments:

Post a Comment