Thursday, October 27, 2011

The great wonder of what is around the corner

So now that I received my infusion (10/13) and have come back around from feeling yucky....I'm doing pretty well! Why is it that when I am feeling well I can't just focus on that? I try so hard to enjoy the days of feeling "normal" but somehow multiple times each day I find myself go back to...."when am I going to feel bad again?" And there are some days when I even go all the way to..."what if it hits me hard again and I end up in the hospital?"

These feelings do limit me. The best solution that I have come up with is maybe it is time for some acupuncture again. Maybe I need to recenter my thoughts on a more regular basis. I DO want to be 100% present and these "what if's" take that away from me all too much!

On another note...I attended the CCFA conference this last weekend at UCI. The biggest thing I left there with is....I will take what I have right now. My disease isn't the worst it could be! I am very lucky I have avoided surgery to date and I'm going to do my absolute best to continue down the surgery free path!

Monday, October 10, 2011

I survived New York!

I got back from a 3 day trip to New York on Saturday night. I has been very worried about how I was going to feel the entire trip seeing that I was so close to next infusion time. Well - happy to report I felt pretty good the entire trip! Only had some pain and discomfort on the last day. So - I questioned myself - how did I do that???

Come to think of it - we really didn't eat much....and we did eat it was sharing a meal. It comes back around to eating less is better on my tummy! Now that I am back home and to my normal routine that is proving harder to keep to. I have to make sure the kids eat as normal as possible and that proves harder for me again. I've already had more stops in the restroom in 24 hours then I did in the 72 hour New York trip!

I hate that - but I guess all in all I can't complain....I survived New York pretty care free...that I what I wished for! I can grin and bear it here at home!

Infusion is in 3 days!!!! Yeah.....time for some good feeling days!

Tuesday, October 4, 2011

Not a Happy Camper...

Well - just got the call from Blue Shield rep - the audit yielded a NO response again! No luck with changing my infusions to every 6 weeks. YUCK!!! I at at week 6 1/2 right now and have had increased symptoms every day! The worst part about it is it is causing me to miss out on things and make different choices than I would had I received my infusion last week.

For example - my kids had no school last friday - it was a 3 day weekend!!! Normally that would be yeah!!! Time for fun and games. But it ended up physically exhausting me and not allowing me to do it all! We began the day by going to Disneyland...the plan was only for a few hours. We were there under 3 hours and I was dragging the last hour for sure. Came home and was in bed for 3 hours that afternoon...only got out because my daughter had to be at her cheer practice and I was the only one around to drive her!

Saturday we stayed home and did a whole lot of nothing, hoping I would be recovered and we could do something fun sunday! Well - Sunday came and I had to cancel taking my kids to the local carnival because I just wasn't up to it!

This is the part of the disease that isn't talked about! It is the stuff in life that I, a 33 year old wife and mother of 2, miss out on! It is not fair! I know I need to stop complaining and just life what I can do! But - it really isn't fair. I don't feel like I am asking for too much. These 2 1/2 weeks of a downhill roller coaster ride are not fun! And now as I wait out the last week my concerns go towards what is this doing to my colon? I work so hard to keep it healthy. The Remicade helps to heal it....what is it doing now as I wait? How many times can my body be "ok" with this roller coaster ride before it stops dealing with it? I want to keep my colon!!!!

So now that I have ranted and raved....I'm choosing to end this with the good stuff happening right now! I'm not bleeding! I still can go out and function semi normally. I can eat solid food still (only in smaller portions). I'm home with my family everyday and not in a hospital. I have medical insurance that will pay for Remicade every 8 weeks! I have an amazing set of friends and family behind me willing to fight the fight along with me!

With all that said it really could be MUCH worse!!! I will take what I have been given and push ahead! But I still wish Blue Shield would listen a bit more to me!

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!