Thursday, August 23, 2012

root canal and GI visit

Well today was definitely an exciting day. (insert sarcasm)

The tooth that was giving me problems a few weeks ago, well it requires a root canal and crown. Today was the first step of that process. Root canal is complete, I have a temporary filling until I go back for the crown fitting and placement.

Anyone that knows me, knows I would rather have my head cut completely off than even step into a dentist office. However, I must admit, I think I found a great dentist this time. He is so understanding to my fears and worries. It didn't hurt at all today. If anyone is looking for a good dentist in the DFW area, look up Sam Koo in Irving. I highly recommend him.

After spending an hour or so at the dentist, it was time to head over to my GI specialist.

It was decided that now that all my infections are cleared up, I am able to go back on Humira. I will start my injections again this Sunday. I am honestly excited to get the ball rolling. I know that I will be down and out for a while, but I have to look at the big picture and pray for remission.

We also decided to go from 20mg to 10mg per day on my Prednisone. This makes me SUPER happy. In the 2 weeks that I have been back on 20mg, I have gained probably 10 pounds and have not been sleeping AT ALL.

I did also learn from some blood work done recently, that my Hepatitis B vaccination is NOT active. The Hep A vac is active, but apparently the Hep B didn't work with me. So I will be doing the 6 month series for the Hep C vac again. How strange!!!

So, that's where I am at today. Fun stuff, right? :)

Tuesday, August 21, 2012

Crohn's disease and Gluten Free

I have decided that I really want to track my progress and disease on my blog. So that I can keep up with what is going on and look back on my progression, or series of events. But also so that if I can help anyone else through this battle of Crohn's disease and going Gluten Free, I can. Please feel free to share my blog address with anyone who you might think would be interested.

I am going to start with an email that I sent someone with Crohn's disease and Celiac disease today.

This is my personal experience thus far:

I have Crohn’s disease (was just diagnosed in May, but they believe I have had it for 15 years or more without treatment and/or diagnosis). I have an ilium stricture and have not been able to get in remission since being diagnosed. I am hopefully going to start Humira again soon, as I had to stop because I got several infections after the initial loading doses.

I was tested for Celiac disease, and it came back negative. However, my GI specialist feels that I should try to reduce gluten in my diet as much as possible. I am not 100% gluten fee.

This is just what I am doing right now, as recommended by my GI specialist.

Also, eating out and being GF is extremely hard. Unless they have a totally separate GF kitchen, there will be cross contamination.

I do not eat any raw vegetables.
I do not eat any seeds or nuts.
I do not eat any peelings on fruits or vegetables.
I do not eat anything leafy. (spinach, lettuce, etc)
I do not eat anything stringy (no stalks on broccoli or cauliflower. No celery. No string beans. No okra.)
I do not eat any type of beans or peas.
I only eat raw fruit that can be easily broken down (bananas, peeled peaches, peeled apples, peeled pears)
I have found that regular potatoes do not work for me. any recipe with regular potatoes, I substitute with sweet potatoes.
I can eat broccoli florets and cauliflower florets, but they must be cooked to death.
I can eat squash and zucchini, but they must be peeled and have no seeds.
I eat a lot of chicken and fish.
I have tried to cut out red meat as much as possible.
Pork makes me sick almost instantly.

As far as GF, I have found several websites were you can buys GF ingredients for way cheaper than the stores. I buy a lot of mixes and flours and cookies, etc through these sites.

Each person is different on what they like as far as GF. Personally, I am not a fan of the rice pasta, but a lot of people seem to like it. To me, its too much like rice to be pasta. haha.

If you add me on Facebook, I have “liked” a ton of GF pages, and they often advertise sales, etc on FB and you can sign up for their email lists to get email updates, recipes as well. I try to always “share” the deals, good recipes, etc on FB.

I hope all this helps. Please feel free to comment and/or email me with any questions. We are all in this together and I would love a new Crohn’s/GF friend.

Sunday, August 19, 2012

Sunday Social

This week, I am joining up with Neely and Ashley for Sunday Social!!!

Join us!

1. What were you like in Middle School/HS?
I think I was just a regular kid in middle school. High school, I was a gymnast and had been for many years. I was also a partier and liked to hang out with the older kids. Probably should have done less partying and more school work.

2. What were your favorite past times?
Shopping, talking on the phone, hanging out with my friends, slumber parties, gymnastics.

3. What songs were you obsessed with?(Backstreet Boys anyone?)
Hmmm. I listened to a lot of country music back then too. I am sure it was someone oh so hot that I thought I might meet and marry someday lol

4. What fashion statement do you look back on and cringe?
overralls. units. lol

5. Who was your celeb crush?
I probably still had a crush on Donnie Walhberg from NKOTB. lol

6. What were your favorite tv shows/movies?
Family Ties. Growing Pains. Who’s the Boss. Married with Children. The Cosby Show. The Wonder Years. Perfect Strangers. The Fresh Prince of Bel-Air. Full House. Saved by the Bell. Family Matters. 90210. Friends!!!!

Monday, August 13, 2012

About time for an update

Just wanted to get on here and throw an update out for all those that are curious about my health.

Things have been crazy for the last few weeks!!!

I started my Humira injections on Thursday, July 27th.

The next Friday, August 3rd, I woke up with my face feeling weird and puffy. By Friday night, the whole left side was swollen up and throbbing, and I had a fever. So off to the ER we went (at midnight. poor Ben). I immediately tell them I am on Humira, so they make me wear a mask. Apparently I had a small infection in a tooth (back molar). When my immune system crashed, my body couldn't fight that little infection and it turned into a full on absess and took over my face.
Because I was on Humira, they wrote me 2 antibiotic scripts and a pain pill, then I was out of there with in 30 minutes.

Things were BAD for a few days. I completely did not have a neck and my face was swollen up over the top of my eye. Don't believe me? here's a picture. eek!!!

By Monday, I was good as gold and back at work.

It was determined on that Monday that I would delay my next Humira injection until after the tooth/face infection was cleared up and I was able to get in with a dentist. (which if you know me, you know that I would rather cut my arm off than go to a dentist)

Now fast forward to Thursday, August 9th. I get to work, not feeling well at all. Had some pretty bad pains in the stomach area. I describe them as what I am guessing contractions feel like. It was a pulsating pain that had me doubled over. With an hour,I was throwing up from the pain. So, I leave work, and call my GI specialist. I am ordered to go directly to the ER. I get there, they give me an IV with pain meds, anti-nausea meds, and prevacid. Then I was off to x-ray and CT scan. It was determined that I had a UTI and a severe Crohn's flare up.

The Dr at the ER would have liked to have me admitted, but my GI Dr suggested that I stay out of the hospital if at all possible due to having no immune system. It was also determined that my body is resistant to one of the antibiotics that I was on for my tooth/face.

So, I came home with 1 of the same antibiotics, a new one, and some new pain meds.

Fun times, right?!?!?

So now that's where I stand. at an absolute standstill.

My dental appt is August 22nd and my next GI appt is August 23rd. At that point hopefully, I will be able to start back with my injections.

From what I can tell, the Humira is/was doing its job. It crashed my immune system as it was supposed to. and when it was time for the next injection, I had a flare up.

The problem was the infections that occurred during that time as a result of the Humira side effects.

So there you have it. I have come to realize that this will be my life for a while. I am ok with it. I have made peace with it. While I don't like being sick, or in the ER, or on all these meds....I have to keep looking at the end result.

I would really appreciate it if you would continue to keep us in your prayers. Also, please be understanding if we cancel plans, don't answer our phones or texts in a timely manner, or just flat out seem cranky some days. My health is one of our top priorities right now.

We greatly appreciate the wonderful support system that we have. Not sure what we would do without our support system. So thank you. You mean more than I could ever tell you.

Wednesday, August 8, 2012

What I'm loving Wednesday

I decided to get back in the routine of blogging, and I am going to link up with some fun ones.

Today I am linking up with the blog, this kind of love for "what I'm loving Wednesday

I am loving that my wonderful husband has been taking so much care of me while I have been sick.

I am loving that my family is so supportive of me.

I am loving this wonderful, crazy kitty of ours named Belle!

I am loving ice cream, any kind really.

I am loving these wonderful flowers I got from Jeannie (yes they are still alive) for my birthday almost 2 weeks ago!!

What are you loving??? go link up! This kind of love

Wednesday, August 1, 2012

Humira side effects - week 1

I would like to use this blog as a diary of my side effects, etc.

After speaking with my GI's nurse today, I am experiencing some of the side effects associated with the Humira injections.

1. I have exhaustion at a level that I cannot even explain. If I sit too long without talking, working, occupying my brain....I could literally fall asleep wherever I am. It's like the exhaustion takes over and I can't even think straight. This is described as my immune system starting to lower and shut down, then my body goes into protection mode.

2. I am having very vivid, weird dreams when I am sleeping. The dreams will carry over from night to night and continue on. I have never had dreams like this before.

3. I am in a brain fog. I forget that I have done things, etc. Its like it completely is gone from my memory.

While these are VERY normal side effects, they keep me on my toes. I am having to learn to listen to my body more and relax (lay down, etc) when I feel like I need to. I am writing things down more so that when I don't remember, I can look back.

This is all very real and scary for me at times....and other times, I am realizing this is just a way of life for me now and that's what I need to adjust to. I am praying like no other and asking for God to guide me through this new journey of what my life is becoming.