Monday, March 15, 2010

Where I have been.....

Yes, I have been missing in action for quite some time. I feel like this last 8 months or so have been a big blur. As all of you know that even follow my blog, the post about Trent's funeral was the last. For whatever reason, it has been difficult for me to blog since then. Sounds weird, but that's just how it has been. Not to mention, the last 6 months have been spent trying to figure out some pretty serious health issues with Dustin. It has been a situation that you can't imagine unless you have been in something similar. Dustin has just barely, in the last two weeks, been able to go back to work for an entire 40 hours. We have been in and out of the ER, been admitted to the Hospital, and have had countless Dr. appointments, scopes, and bloodwork, all trying to figure out what is wrong with him. I will not go into all of the nightmarish details of the last 6 months, and about how incredibly difficult it has been to find a diagnosis.... but I will tell you that I have had my faith in every way tested, not only my personal, spiritual faith, but my faith in the medical field as well. There are a couple Dr.'s that I would honestly like punch in the face, and then there are those few that have pulled through for us..... and thank the Heaven's above for them.
To make a long story short, Dustin has been diagnosed with 2 things: Celiac Disease, and Eosinophilic Esophagitis (EE). Two separate diseases, that normally don't exist in the same person together..... of, course. For those of you who do not know, Celiac Disease is an autoimmune disorder located in the gastrointestinal tract. Wheat, cross-contaminated oats, barley and rye contain gluten that is toxic to people with Celiac Disease. The body attacks itself, flattening villi, which are hair-like projections in the small intestine. Villi under normal conditions, would allow the body to absorb needed nutrients. But, because of the damage that gluten causes to the the villi, most nutrients are not able to be absorbed, and this can cause an array of problems... which Dustin has had an abundance of. EE is an allergic inflammatory condition of the esophagus that may be caused by food or airborne allergies. It can cause many symptoms, such as difficulty swallowing, food impaction, heartburn, chest pain, difficulty breathing, all of which Dustin has had. So, between the 2 conditions, he has been so miserable and literally deteriorating before our eyes. He lost around 30 lbs, give or take, and had zero strength or energy. He could not eat anything, with out having some kind of adverse effect. The most frustrating part, I think, was being told time after time that he was "just having panic attacks". We both knew that it was more than that. Of course he was having panic attacks! His body was freaking out because of everything that is wrong with it! I'm sorry, but I will never forget or forgive the Dr. at the ER that looked at both of us and told us "not to come back here. Go to a psychiatrist." Can you say IDIOT!? Sorry, I'm just a little bitter. This whole situation has drained all of us both physically and mentally. We also know that Dustin has probably had Celiac Disease his entire life, but the symptoms were brought into full effect probably by the stress and trauma of Trent's passing. Emotional stress and trauma is a common factor in many people that are diagnosed with Celiac Disease. Now, for the positive... Celiac Disease has one treatment, and one treatment only, and that is to eliminate Gluten from the diet. If you don't know it already, Gluten is found in many of the foods we eat on a daily basis. It is found in things as simple as cream soups (ie: chicken, mushroom, etc.), tomato soup, condiments, spices, it is used as a filler in many things. It is found in pasta, tortilla's, breads, anything made with wheat, barley, or rye. So, as you can imagine, it is a little difficult to just stop eating it. I was totally overwhelmed and didn't even know what to make for Dustin to eat, let alone myself or the kids, because I felt bad eating in front of him. I have since done a lot of reading and research, and am starting to get the hang of it. There are many resources available online, I have purchased a couple books, and cookbooks, and have even started making up my own recipes. I did have to re-arrange my pantry and separate everything out, and I still struggle trying to think of things to make sometimes, but I know that it will get better and easier the more familiar I get with gluten-free options. Dustin has been gluten free for about a month now, and we are finally seeing some improvements. He has good days and some bad ones still, but you figure it took him 6 months to get this bad, it is going to take him a while to regain his strength completely. As far as the EE goes, he is being treated with a couple different medications, and he will be following up with a new GI Dr., who will do routine endoscope's to monitor both conditions, thanks to the awesome allergist (Dr. McKnight) that we were blessed to find. I would like to thank you all for your unending prayers, acts of kindness, patience and understanding. I know that I have not been "myself", but you have all stuck with me.... and I do not think I will be able to repay you for that. I am holding out faith and hope that better months are ahead....
Oh, and I forgot to mention just how genetic Celiac Disease is. The allergist is sending us directly to a Pediatric GI to have the kids tested. The likeliness is high that at least one of them will have it. If that is the case... we will become a completely Gluten Free Family. The worst thing in the world?...... I don't think so.

5 comments:

Buzybugs pixie.blogspot.com said...

Good Job Steph- well said, it has been a hell of a stretch in SO many ways- Trent's death ( i cannot even believe he is gone) has been a complete havic. I saw first hand how Dustin could not move from couch to couch without going like an old man. Gluten is also in make up for those of you reading comments.
I love you guys, I am so sorry for all you guys have been through- I hope everyone is more on the up and up- as much as we can considering what has gone on.
I am glad you FINALLY blogged. Love you.

Rachel said...

You should write a letter to the Jerkface doctor. It won't change him, but you'll feel better. I did it for the pediatrician that jerked my boys around for over a year. Got rid of the feeling of wanting to pummel him. And THANK GOOODNESS you finally found doctors that do their job!!!

the cooperfive said...

I love you Steph and I'm so glad things are looking up...

Our Little Family said...

Holy moses Stephanie! You poor dear! I can't imagine going through that... there is something about those doctors in vegas... they are all kind of crazy!! I'm glad things are getting better, and we'll pray for dustin's health!! :o)

Lynda Teator said...

Hi Stephanie,
I sent you an e-mail in reference to our Gluten Free Bakery, Acesupglutenfreegoodies.com I haven't heard back from you so I decided to look you up. Your story sounds so familiar to us. Before my husband was diagnosed with Celiac he had been scoped endless times and was always told "He was healthy but has a Type A personality". That didn't help my poor husband who went through approx 30 years with severe diarrhea and abdominal pain, weighed 120 pounds. Although, he does have a Type A personality, he is finally healing since going on a totally gluten free diet 8 months ago. He has bad days at times but much less then in the past. He is looking and feeling healthier then he has since he was 10 years old. We look forward to meeting you at the bakery when we open. If there is anything we can for you before then please check us out on our website and you can contact us through there. If you want a great place to eat check out Lazy Joes Fish and Chips, he is a gluten free restaurant and kids love the chicken tenders he makes. We eat there usually every Saturday evening and he has business cards and flyers for the bakery. Looking forward to hearing from you.
Lynda Teator