Keepin' it real....

The last month has been a complete blur and so surreal feeling to me. I have done so much blood work, drank 2 too many nasty “cocktails” for testing, gotten an ultrasound, CT scan, Colonoscopy…and had follow up after follow up appointments. Then had a TB test; scheduled more lab work; and scheduled a bowel series barium test for soon. I have been through more pain than I ever thought possible and gone with less sleep, food, nutrition than I ever thought possible. I have tested new medicines, been put on the max dose, then had dosages adjusted. I have taken 20 pills a day for a week now. I feel like I have been through the ringer. And I am PISSED OFF about it. I am pissed that I am hurting. I am pissed that this is happening to me. I am pissed that I can’t eat or drink what I want. I am pissed that I keep getting poked and prodded. I am pissed that I have bruises all over me. I am pissed that I am tired all the time. I am pissed that I can’t sleep. I am pissed that this is happening to me. I am pissed that people think I have been self-diagnosing myself online. I am pissed that people don’t believe I know what side effects I am having from different medications. I am pissed that it took so long for anyone to believe that I am not crazy with this pain. I am pissed that I didn’t fight harder for an answer before. I am pissed that I have a disease that is non-curable. I am pissed that people are not supportive as I thought some would be. I am pissed that I can’t even express how grateful I am to those that ARE supportive.

I am just pissed off. And I feel that I have every right to be. I might be like this for a few hours; I might be like this for a few days. But this is the pissed off stage of my “grieving process” of being diagnosed with Crohn’s disease. So please excuse me while I go be a little more pissed off.

medical follow up appointment/Crohn's Disease

Today was the follow up for all of my lab work, colonoscopy, scans, etc over the last few weeks. To say that I am overwhelmed, would be the truth.

The polyp that was removed during the colonoscopy, came back pre-cancerous. They removed all of it during the colonoscopy, but with my family history of GI cancers, I will have to have a colonoscopy at least every 2 years if not sooner. Cancer is a scary freaking word and it hit me to the core when he said it. Thankfully, it was caught before it turned into anything major and we will be able to monitor it closely.

Next!!! The tests came back postive for autoimmune disorder (which means that my body is attacking itself), positive for Crohn's disease, and positive the ilium stricture.

What this means is that I will continue the 3000 mg of Pentasa a day, 20mg of Prednisone a day, and will be closely monitoring my diet to see what affects foods/drinks have on me.

If I have another flare up, the dr is saying that I will more than likely be put on Humira (which means giving myself injections in the stomach several times a week). He would like to do everything possible to avoid this, as there are MANY risks to Humira and such drugs.

This is life changing for me and something I am not taking lightly at all. I am scared. I am nervous. I am in shock.

I will be doing several more blood tests, skin lab work (for TB, etc), and a bowel xray with barium over the next few weeks. More than likely I will also be reporting to the GI specialist every 2 weeks for a while.

Below is a link that helps explain Crohn's disease for those that are aware (just as I wasn't until a few weeks ago):

http://www.ccfa.org/info/about/crohns

We would like to ask that everyone continue to prayer for us during these times.

Also, I would like to hear opinions, thoughts, prayers, recommendations from anyone that wants to offer about Crohn's disease, etc.

Medical update/life update

Life has taken a definite spin for us this month.



Beginning the first weekend in May, I started having some pretty serious personal health issues. After seeing, my regular dr, a GI specialist, an ER visit, more GI specialist appointments, an ultrasound, and a colonoscopy later…..it is determined that I have Crohn’s disease. And a pretty serious case of it.



Right now, they have me taking 6 anti-inflammatory pills a day and 4 steroid pills a day to try to get everything under control and into remission.



I feel ok, but I am constantly tired and very worried/scared about the outcome of all of this and where this will take us on our journey that WE had planned. We should have known, this isn’t our journey, but it is His journey for us. I am putting all of my trust in our Lord and know that he has a plan for us.



If you guys (if anyone even still reads this blog) don’t mind, please just keep Ben and myself in your prayers. We would love to be covered in prayer during this time in our lives.



Does anyone have any experience with Crohn’s that could give me diet recommendations or any other advise. It would be greatly appreciated.

The A to Zs of Amber

Age: 33....OMG! ugh, I will be 34 this year

Bedsize: Queen. although, with little Belle now sleeping with us, we may need to upsize. LOL

Chores that you hate: anything to do with the bathroom. so gross.

Dogs: not yet, maybe when we get a house.

Essential start to your day: Dr Pepper.

Favorite color: all shades of blues, greens, and purples.

Gold or Silver: silver

Height: 5'5". (I don't want to discuss this any further lol)

Instruments you play: I took piano lessons for many years as a kid and wish I had stuck with it. I can still play Silent Night.

Job title: Underwriting Coordinator

Kids: none.

Live: Irving, TX

Mother's Name: Rhonda

Nicknames: I have many. Am, bear, Grandpa used to call me "doll", babe, honey, love, little girl

Overnight hospital stays: never.

Pet peeves: oh jeez, I have a ton of these.....people being late. people not doing what they say they will. no showers. people complaining about their lives and doing nothing to change it. my list could go on and on and on....

Quote from a movie or tv show: "drink your juice Shelby"

Right or Lefty: Right

Siblings: one brother, Ben. 2 step sisters, Stephanie and Jennifer.

Time you wake up: 6:30isham

Underwear: what about them???

Vegetable you hate: peas

What makes you run late: my husband, lol. its the truth

X-Rays You've Had: this list may get long. hand (when I sewed through it). stomach/abdominal area...many times. head MRI/CT scans many times. dental x-rays.

Yummy food you make: I make a lot of yummy things. now that the warm days are coming up.....its time for pulled pork again. YUM!

Zoo Animal: any of the baby ones.

THE APPOINTMENT-midwife/birthing center

Yesterday, Ben and I had our pre-conception appointment with the midwife at the birthing center. All of this is a bit overwhelming, but we are ready for it. We talked about our family medical histories and what steps/tests we should take, etc. We learned a lot. It was a lot to take in.

Some of the suggestions that the midwife suggested to me, to prepare my body for pregnancy are:

`quit smoking. (well obviously)
`eat more protein and fiber, and less carbs.
`walk 1 hour per day.
`take the pre-natal vitamins as directed.
`take the vitamin D supplements as directed.
`drink 3 liters of water per day (this is going to be a huge one for me, as I like my Dr Pepper)
`sleep well (anyone who knows me, knows I don't sleep)
`research/read about some of the genetic testing that has been recommended due to our family medical histories.
`last but not least, get to baby making.

So obviously, I have a few major changes ahead of me. Mentally, I am trying to process all of this and make it work for me physically.

I could use some support and any helpful information, recipes, etc. from our family and friends.

We could both also use the prayers right now. For guidance, patience, strength, and love.