Health Care Bites Back....

Well it's after midnight.... I fell asleep for about an hour and woke up in pain. So, I thought I'd get up and write a little blurb and give an update on my health situation and the roller coaster of a day it's been!

Today is the first time I've felt like my health insurance wasn't on my side. As I said in my previous post, I had been waiting to hear when I could start Remicade treatments again at a last attempt to get my crohn's under control before needing some kind of surgery. Well, my doctor's office called to say that my insurance DENIED the pre-authorization to allow me to have the drug. So, if I wanted to have the drug, I would have to fork out the $4,000 plus per treatment and my insurance will cover nothing. Since piles of money aren't flying out of my you-know-where, Remicade is not an option without insurance coverage. The insurance company denied the authorization because I had been on the treatment before and I stopped the treatment because it was not working as effective. So, in a way, I guess I can't blame them for denying it according to my history. Why should they have to pay all this money for something that stopped working for me in the past already? I'm torn because I work for the insurance company.... I have seen this happen on many, many occasions and it is their way of trying not to waste premium dollars to help keep premium costs lower for members and have more available to pay claims that are medically necessary. So, I guess I have to give them kudos for that. On the other hand, who is more aware of my medical history and condition? The insurance company or my doctor? Anyways, I'm torn.... My insurance suggested that I try Humira, which is similar to remicade. I would give myself a shot every couple of weeks. My doctor has talked to me about that drug in the past, and he didn't think it would work well for me given my history.

Ironically, I had scheduled myself off for the afternoon expecting the Remicade to be approved and that I would get in for my first treatment today. I found out I wasn't approved for the treatment early this morning and planned on just staying at work for the rest of my shift. The doctor's office was supposed to call me back later in the day with the next steps I should take... Then, PAIN STRUCK. I got this terrible pain in my abdomen that shot into my back.... It felt like there were these little elves with little knives poking me all over inside. (I don't know why I chose elves.... maybe trolls or smurfs would work just as well) I was already disappointed that I couldn't get my treatment, and this added pain made thinking clearly almost impossible. I decided to go home for the day since I had it scheduled off already. I spent the afternoon with a heating pad on my stomach waiting for the doctor to call, and I would tell them what was going on. The doc's assistant called and said that my doctor is going to appeal the denial because he feels Remicade is really my best shot right now. I am to continue taking prednisone (which I have nicknamed "The devil's drug") at a smaller dose and iron supplements to fight my recent diagnosis of anemia. I told the assistant I was having pretty bad pain, and she said she'd talk to the doctor and call me back with further instructions.

5:00 rolls around (when the doc's office closes) and I still haven't heard anything. My pain subsides enough so I can do some Valentine's day shopping, and then I was to meet Natalie at her work to go visit her friend Stacy that had a baby today. Things didn't work out to go see Stacy, and my pain started to come back again. I decided to call the doc's answering service and page the on- call doctor.

I spoke with a Dr. Sossenheimer (one of my doc's partners) who pulled up my medical history. I told him that my remicade treatment had been denied, and after looking over my recent CT scans, he thinks it would be a good idea to talk to a general surgeon since I'm obviously not responding to medications. He went over the risks of getting Lymphoma if I continue treatment with these immuno-suppressive drugs, and that I might not be able to wait for my insurance company to review my doctor's appeal for remicade. He says if I'm in that much pain, that I could go to the ER and have a small intestine resection surgery tonight! He even told me the name of the surgeon on call.... He said my other option was to get some pain meds and wait until talking to my GI doctor in the morning. I told him that the pain meds would be fine for now, and that I'd rather talk with my doctor first than have emergency surgery tonight.

So, that's where I stand right now...Pretty frustrating, but getting somewhere slowly I guess. I really think I'm ready to have surgery and take a break from these medications for awhile. We'll see what the doc has to say tomorrow.

Life in the fast lane... almost 2 years and counting!

Ok, so I still can't sleep.... I'm going to continue my rant of the day.

I have been an avid journal writer since I was in the 9th grade. When I started keeping a journal, I wrote almost every single day up until the end of my mission. After my mission, I let things get in the way and got lazy.... now I'm lucky if I write once every few months. So, this is going to become my new journal of sorts....

Here's an update on what's been going on since Natalie posted that I graduated... She failed to mention that she also graduated in December 2008 with her bachelors degree in Speech Pathology and Communicative disorders. So, we're both college grads :) Since graduating, we've both been working and are applying to graduate school. Natalie hopes to get a masters in speech therapy, and I'm shooting for a master's in healthcare administration...Although there's still a little part of me that wants to dive into med school, but we'll see what the future brings.

While we're figuring out some big things for the future, we've both been working and enjoying not being in school. Natalie was working as a speech pathology aide at Intermountain Medical Center, and recently started a new position as an administrative secretary in the Heart and Lung Clinic at Intermountain medical Center. I've been working at Regence BlueCross BlueShield for almost 3 years now. I'm looking for something a little more challenging and where I can put my degree to use. So, if you know anyone that is looking for a motivated, hard-working college grad, send them my way!!!

We spent the first year and a half of our married life living in our little box of an apartment in Sugarhouse. I could never have survived there without Natalie's creativity and turning that little place into quite a nice home for us newlyweds. We had great times being so close to the shops in Sugarhouse and enjoying being so close to downtown Salt Lake City. We have so many great memories, and I am so glad that was our first place. It was especially fun serving as nursery leaders in our little ward. It will be great to tell our kids how we couldn't walk around our bed because it filled the room, and how we had to get dressed in the living room because our clothes wouldn't fit in the very small bedroom closet. And who could forget the convenience of the bathroom. You could give yourself a bath without even getting off the toilet! :)

To save a little money, In October 2009 we decided to pack up our little apartment and move in with my parents and little brother Darren in Draper. It was fun being so close with family and we couldn't have asked for better landlords than my parents :)

Since then, we decided to leave the nest again and get another apartment in Cottonwood Heights. This place is a PALACE compared to our little apartment in Sugarhouse. We feel like kings with our dishwasher, washer and dryer, and oh yes, even a garbage disposal! Our clothes fit in the closet too!

So, we are having fun. We are excited for the changes coming in our family... my brother Brandon and his wife Loren will be having a baby any time now, Natalie's brothers Matt and Michael are off to serve missions in Brazil in May, and my brother Darren and his bride-to-be Dezi will be getting married in May! We have so much to be thankful for, even with the recent trials with my heath. We are still being blessed in so many ways.

Anyways, You really are a trooper if you made it through this... Thanks for reading! Until next time....

My Story with Crohn's Disease

Well, I've been looking for things to do with my recently acquired insomnia. Natalie reminded me that her friend Paige created this blog for us. I thought this might be a way for me to fill some of those sleepless hours....So here goes....

I thought I'd start my first post with why I am not able to sleep in the first place.... I've been taking medications to fight a flare-up I have been having with crohn's disease. For those of you who don't know, I was diagnosed with Crohn's on my mission in Sweden in Spring 2005. If you don't know what Crohn's disease is, it is an autoimmune disease that attacks the digestive system with ulcerations and fistulas that can develop anywhere from your mouth on down. There's no cure, but it can be managed with medication and surgery as a last resort. NOT FUN!!!

It was really weird how it all started. All of a sudden, I just started losing weight without even trying... Then other symptoms started... an almost constant fever, sharp abdominal pain, loss of appetite, diarrhea, even more weight loss, and even a weird eye infection. With the help of a dear Swedish person, I was able to work through the cracks of socialized health care and find a doctor that was with it enough to come to my diagnosis. After a colonoscopy that showed some pretty major inflammation in my large intestine, I was hospitalized in Malmo, Sweden. I went for a week without food, being fed nutrients through an IV to give my digestive system a rest and allow the prednisone and antibiotics to do their magic and let me heal.

I came home from Sweden taking a few different medications waiting to get into a specialist in the States. I weighed almost 50 pounds less than when I had left on my mission. It turns out I have one of the worst forms of Crohn's disease, where I can develop fistulas where growths connect from my intestines to other organs or make new openings in the skin. I started to develop these fistulas, and my doctor immediately placed me on the IV therapy treatment Remicade.

I would receive Remicade infusions every 8 weeks, and this worked a miracle for the next 3 and a half years. I was virtually symptom free and I was enjoying being in remission. After some time, I started to develop the same symptoms that I had above. My doctor increased my IV infusions to every 6 weeks. I had a colonoscopy and it showed mild inflammation had returned.

In January 2009, I started seeing a different gastroenterologist to get another opinion on how I might get Crohn's under control.... I started a new drug called Cimzia, where I get a shot in my belly once every 4 weeks. It really worked wonders like Remicade the first few treatments, but to my dismay, I started to feel the nasty symptoms coming back.

Since then, I have been trying out different drugs to try and get things under control. These past couple of months have been especially difficult. I have lost about 25 pounds total in that time frame. I have experienced the worst pain I have ever felt in my life. I was hospitalized with dehydration and pancreatitis due to another medicine that I tried. I have made 2 visits to the ER as well. IT'S BEEN CRAZY!! During my last meeting with my doctor, I have learned that it is now coming down to surgery to remove the inflammed parts of my intestine. My doctor wants me to give Remicade one last try since it worked so well for me before. He tells me I have about a 40% chance of it working, but risks of having a reaction are greater when going back to it. It's been quite the emotional roller coaster I must say.

I hope that this post wasn't too negative. Along the way, I have had such great support from my friends and family. I couldn't have gotten through this without Natalie. She has done so much for me to keep me comfortable and happy both physically and mentally. She's my guardian angel! So, I'm waiting to have my "first" remicade treatment sometime this week. I should know within a couple of weeks whether or not it's going to work for me. We'll keep ya'll posted!! :)