January can't come fast enough!

It has been a while since I updated this blog.  These last few months have been extremely hard on me and my body.  Hoping that January will bring a better year to finding answers and a new me.  I have an appointment with Dr. William Snape on January 20th in San Francisco to see if I meet the criteria for a pacemaker to be put in my stomach.  I am really hoping that this doctor appointment will turn out tons better than the UCLA one.  I have been so nauseated and vomiting multiple times a day that I really feel that the pacemaker may be my only answer in fighting this terrible disease.  I wish so bad that I could just get up for one day and not throw up; just one day that I don't have to run to the bathroom in a hurry.  My kids are getting older as the days go by and I'm sad I'm not with them.  They see too much and know way too much about a mommy being sick.

So, onto 2011!!  Let's hope and pray that this will be a turnaround year for me.  Thanks for all your love that you show me!

Me, myself and my machine~

I have a nutritionist now!!  YEAH~   Thank you so much to Katie McDermott that made the recommendation to see Merin Kinikini at IHC Medical Center in Murray.  Katie also suffers from Gastroparesis severely and I pray every day that she can feel some comfort.  It's no fun fighting this horrible disease.  Anyway, Merin and her assistant, Hilary, have been my lifesavers.  They have not only taken care of me physically, but they understand me emotionally and that helps me so much.  I am now attached to my favorite machine, that I love to hate, 24/7.  I was given a different formula made from Nestle and it seems to be helping me tons.  Also, with the G tube inserted into my stomach I seem to be less nauseated and I am able to drain my stomach anytime I feel pressure or pain.  I'm glad we made the decision to put the tube in even though it was a 3 day hospital stay.  I'm still in some pain from having the tube in but that is to be expected.  I have pain all the time with my Gastroparesis...  so this is nothing new.

The Standard Examiner Newspaper did an article on me with the hope that we could get some additional awareness to the public about Gastroparesis.  Here is the link if anyone wants to read the article:
    http://www.standard.net/topics/health/2010/09/12/syracuse-womans-life-without-eating-gastroparesis

With the newspaper article being published good news came our way.  We are so grateful to Nestle Corporation for calling the paper and giving them our personal information.  They contacted us and we filled out the paperwork for the formula to come to me free.  Nestle has said they would send my formula to me for free, but unfortunately, this has yet to happen.  I suppose everything takes time and a process of getting things approved etc.  We are still hoping they pull through.  It would be such a huge blessing.  I have gone months without proper nutrition because of my health insurance denying me this.  Even though I despise being hooked up to the machine, at least I now know the food will be there and I have a way of being fed without worrying so much about the cost and what affects it is having on my family.  I will be forever grateful to Nestle.  Please cross your fingers this all works out!

I also wanted to mention the 5k run/1 mile walk we are having on October 9th.  It will be fun to have so many friends and family around and a yummy breakfast that I can SMELL and you can EAT!!

Thanks for being here for me everyone.  I love you!

Changing of the tubes!!

First and foremost, I need to say "thank you" to so many of you that came out and supported me and my family this weekend. We had a huge turnout for the Spaghetti Dinner and Auction. I was able to see lots of friends and neighbors that I haven't seen in so long. I appreciate everything that was done to put on such a huge night. There were so many people that helped and gave of their time and I love you so much for that. Thanks for caring so much about me~

So, today I'm headed back up to the hospital to put an NG tube in for decompression. They are admitting me because of the amount of pain I have whenever they mess with my tubes. The NG tube should be a temporary one until they see if I can handle the pain. If all goes well, they will put a G tube into my stomach on Wednesday or Thursday. I will still have the J tube for my feedings but the G tube is to help with decompression. I have heard alot of good when people have the G tube in so I'm hoping that it really works for me. I have been told that with the G tube in and staying hydrated I would feel sooo much better! I really hope so. Hoping and praying this will be a good week.

Life in the E.R.

Spending another night in the University of Utah's Emergency Observation Unit. I seem to be spending alot of weekends here. :(

THE DAY IN THE LIFE OF GASTROPARESIS....

I found this on facebook today... it 100% defines my life! If anyone questioned my diagnosis or this horrible disease, read this and try and understand!

Can you imagine never being able to eat again? Hooking up to IV nutrition or tube feedings every day in order to live? Carrying your nutrition on your back all day or being attached to a pole all night? Or, simply having to "survive" on chicken broth, Ensure, and small bites of food all day long? And in spite of that, still dealing with malnutrition, dehydration, weight loss, abdominal pain, nausea, and vomiting on a daily basis?
Frequent trips to the ER and hospital become routine...just a part of life. Social activities are non-existent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You feel fortunate that you are even capable of keeping that down, realizing that many people in similar situations can't. Making plans is a challenge. You may feel well and up for an outing, but then while out the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That's what life with gastroparesis and intestinal pseudo-obstruction is like.
These conditions are so poorly understood. They are so hidden that people often don't believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.... See More
Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn't wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers, and soup...not exactly a champions dinner!
Now, take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries, and additional illnesses that develop over time. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.
On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they don't "look sick." Others believe those who suffer really just have an eating disorder and use a "mild" condition as an excuse for not eating well. People simply don't understand that a couple sips of soup can send one's gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting. Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a month...so they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available. Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them...not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.
Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn't have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV. But you couldn't get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.
People with GP and CIP don't have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don't work well. Patients are basically told to "live with it." In some cases, it can't be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations. GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, regardless of severity. There is no escape. Is this the kind of life a person wants to "just live with?"
There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over and people are unable to survive the trauma on the body. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive. While this can be miraculous and life saving, it doesn't come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There's not really a choice when you get to that point.Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the flu, every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments, and claims by others that what they deal with is not real and not worthy of attention. Because they don't "look" sick, family and friends who don't believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to "benefit" from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking "privileges," and other accommodations at work and school. They are often looked at oddly when forced to admit they are on disability because of a "stomach" problem, can't lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.
GP and CIP need more attention. People don't understand what it is really like to fight these conditions.

CALIFORNIA

So, it was a pretty stressful week filled with a few moments of joy. We went to UCLA Medical Center to meet a new doctor and go over my diagnosis. He was such a nice, caring doctor. I am so thankful we were able to travel there just to get another opinion and hear his thoughts about gastroparesis. Unfortunately, we were told that I do not meet the criteria for the pacemaker. :(

The pacemaker is great for someone that does not have chronic pain and other intense health issues. I was really hoping that the pacemaker would help me and kind of depressed this would not even be an option. Dr. Osviowitz did run a ton of blood tests to check for some auto-immune diseases as well as some other extensive tests there. We will find out the results within this next week. He was so kind and said he would work with my doctor here in helping me anyway he can. You have know idea how nice it is to hear a doctor care and be willing to help!

On the bright side of my California trip was seeing Hollywood and Rodeo drive. Even for a day... it was nice to 'pretend' I could afford to shop at Louis Vuitton! lol.. We were able to drive down Pacific Coast Highway for about 30 miles and it was INCREDIBLE! It was really neat to see all the different houses along the highway and be a little star struck! I stopped and took a picture of a real life lifeguard holding his orange lifesaver thing. It was funny to talk to him and his wife and hear how they had just visited Utah and thought Utah was so beautiful! California was good, but I'm so glad to be home. It's extremely hard on my body to travel.

We are still in the appeals process to my insurance company to pay for my feeding tube supplies. This is so discouraging. I still can't believe that a 'board' of people can determine whether I receive the health care I so deserve and pay for. Cross your fingers and pray a lot!

We are still planning on the garage sale on the 28th of this month. If anyone has any new or gently used items that can be donated, please let us know. The spaghetti dinner and auction is on Sept. 11th and the 5k/1 mile walk is October 9th. Thanks so much for all your support and love. My life wouldn't be complete without any of you!

“Nothing is more powerful than hope. One little nibble can keep a person fishing all day!”

Herbert V. Prochnow Jr.

Found this quote on a gastroparesis website today. The more I search on the internet about this horrible disease, the more I learn. There are so many other people out there that can relate to my life by either living it itself, or being a family member to someone that suffers from it. This is a story from another woman that basically has 'lived my life.' I hope the link comes up! Just an FYI for all of you!

http://www.digestivedistress.com/main/page.php?page_id=48

Thanks again for supporting me and being my friend!

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!!!

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!

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!!

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!!!

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~