Saturday, July 31, 2010

I need to start paying rent at the U of U hospital!

Never in a million years did we anticipate asking so many friends for help! We are a family that tries so hard to be self efficient and self reliant. But we finally came to the conclusion that we can't do this on our own. Please let the word out that we desperately need sponsors to help us get these fundraisers under way. I appreciate all of you that are willing to help me. I pray these next few weeks go by fast. Spent another night in the ER last night because of the pain. When your entire gut shuts down it literally shuts down everything. The pain I feel is incomprehensible. I want to be a mom to my kids soooo bad that it hurts. Is it bad to pray that a doctor will be the 'fix-it man'? California can't come fast enough!!!

Friday, July 30, 2010

Fundraisers!

We have 3 fundraisers coming up in the next few months.
August 27th and 28th --- yard sale
September 11th --- spaghetti dinner and auction
October 9th --- 5K run and pancake breakfast

Thank you so much to everyone that is putting in all their time and energy to making these a success! I love you!

Friday, July 23, 2010

Another ER visit tonight! :( I was really feeling weak today and I passed out and fell down. My knee hurts really bad so I'm getting it looked at. Might as well get re-hydrated while I'm there! Hopefully, tomorrow will be a much better day!!

Wednesday, July 21, 2010

LESS THAN 1 MONTH TILL UCLA!!! STOMACH IS GETTING SO BAD AND I DONT UNDERSTAND WHY?? AND I REALLY MISS PROTEIN SHAKES! AT LEAST I FELT A LITTLE FULL WITH THOSE. DON'T NACHO'S SOUND SO GOOD RIGHT NOW?? OR PIZZA?? OR WAFFLES!?? ANYTHING THAT I CAN CHEW AND SWALLOW WOULD BE NICE RIGHT NOW!! GENTRY WAS ABLE TO EAT PIZZA THE SECOND DAY AFTER THE PACE MAKER WAS PUT IT.. KEEPING MY FINGERS CROSSED!!!

Saturday, July 17, 2010

My Story... from the beginning.

If you're reading this blog it's probably because you already know who I am and have been a part of my life in some way at some time. No sense going back more than a few years.

I met the love of my life, Jeremy, in 2003. We were married in 2006 and have two beautiful children. Micah will be 4 in August and Maili is 2 going on 20. My family is my entire world. Oh, you have no idea what I would do to spend my entire days with them.

Unfortunately, a little thing called 'gastroparesis' has taken over and completely consumed my life. Gastroparesis, basically means that my stomach has shut down. My stomach does not digest food normally. I have had many, many difficult health issues prior to the gastroparesis but always felt we could stay in control and handle them. When the gastroparesis started we headed toward a downward spiral and are still trying to gain control.

Micah was born in August of 2006 and complications started arising from there. My gallbladder was taken out when Micah was just a few months old thinking this would solve the problems I was having. I got pregnant with Maili in 2007 and was extremely sick throughout the entire pregnancy. She was born in February of 2008.

In June of 2008 my doctor suggested I receive a Botox shot to help my stomach digest food. That helped for a time. But by the beginning of 2009 I was feeling so sick I basically went on a full liquid diet. The entire year would be consumed with instant breakfasts and protein shakes. By Halloween 2009 I was vomiting pretty much everything that went in by mouth. When Thanksgiving came around I was in so much pain, extremely weak and very pale. Basically the only thing I ate that day was the apple pie my Aunt made for me. Christmas day I again divulged myself into some apple pie knowing that the consequence would be throwing it up. By this time I wasn't able to put anything in by mouth, not even water. I had lost a considerable amount of weight and very malnutritioned. Another botox shot was given on New Years Eve of 2009. To no avail. I was getting worse as the days went by. My weight was still plummeting and I was starting to get really scared.

In January of 2010 I was hospitalized for a week with kidney and liver failure along with the gastroparesis. I ended up dealing with pancreatitis on top of everything else. The doctors were eventually able to get my pain under control with IV meds. They then placed the feeding tube in my nose so that I was able to get the nutrition I so desperately needed. After getting my pancreas and liver enzymes under control I was able to go home. It was to be short lived. Being on the feeding machine was good but it would not keep me from getting dehydrated and malnutritioned. There were so many more ER visits I gave up counting after that. I can tell you, for anyone that wants to know, how much each individual ER room costs at McKay Dee Hospital.

Feeling frustrated and really not getting the help that I felt I needed we made an appointment at the University of Utah to see a gastroparesis specialist in April. It was in April that the feeding tube was placed in my stomach instead of the nose. I wasn't getting any better and the pain was completely unmanageable. What was supposed to be an in and out procedure ended up being another long week in the hospital. I have been hospitalized a few more times since this. I have become friends with the paramedics at the Syracuse fire station and the Sheriff deputies that come to the house pretty much know what to deal with when they see me now. They have been so kind and empathetic when we have needed to call them. I can't thank them enough to be willing to drive me all the way to the University of Utah hospital instead of the closest one 5 minutes from my house. Of course, the billing agency likes this as well... it's pricey, believe me!!

I wish I could say that I am getting better. But that's just not the case. My life revolves around the tube that is connected to me so that I can survive, the meds that I so desperately rely on to control my pain and the bathroom that I am constantly running to to vomit in. There is some hope though!

I have an appointment at UCLA Medical Center on August 16th to see a motility specialist that purely concentrates on gastro problems and uses the Enterra Therapy. This is a gastric stimulator (pacemaker)that is placed into your abdominal wall and is supposed to have really great results. The doctors in Utah are completely against this therapy and refuse to even consider it. So, my option is to look elsewhere. As of right now, I am not 100% convinced that the pacemaker will work for me just in the mere fact that I have some other gastro problems as well, but any help is better than no help. My quality of life is at zero. My days are long and the time spent with my children is minimal. Sometimes I wanna give up. I can't imagine going through life this way for much longer. I can only hope and pray that the doctor at UCLA will give me the help I need. Any extra prayers are always welcomed. :) You can pray for my insurance company too (blue cross blue shield) because they are really being difficult! At this moment, they are denying all feeding supplies and want the feeding machine to be given back. How can they deny someone the essentials they need to sustain life? I'll never understand!!

So, like my cousin Lexi says, cross your fingers and your toes and your legs and your arms that I get this pacemaker and the help I need. I'll keep you posted.


The day in the life of Chelsea~!
Wow... I would've never thought that my life would be where it is at this moment. We've set this blog up to allow me to express my feelings, worries, concerns, and hopefully some happy times. Boy, do I wish I had more good days than bad days to express the happy times. I am a very private person in general, so I'm very nervous about opening up and letting the 'world' know how I feel. This is the beginning of a journey... I hope you'll come along~