The Invisible War

How can I get people who are not able to see my pain, to understand just how crippling it is. How can I get them to understand that at times I want to explode. How can I get them to understand the enormous amount of physical, emotional and mental strength it takes for me to get through each day. I try not to complain. I try not to take my frustration out on others. I try to focus on positive and healing energy. Inside of my body, there is a war going on and I am feeling the strike of the guns, knives, swords, shields, maces as they clash sometimes endlessly. It is frustrating when you begin to feel the doctors are helpless against this beast and there really isn't much more they can do until you escalate to the next level and that is the last thing you want. It is hard when every blood test, CT Scan, X-ray, stool sample all show the same thing. Nothing has changed, this is just your life, please accept it and deal with it. I keep feeling like I want my life back. I want the theater. I want clients, I want a birth. I want to give. I feel stuck. I feel unfulfilled. I feel helpless at times. I feel the invisible war inside.....

Not Listening

For the first time, I have made the decision to not listen to my GI. I am not being disobedient because I am arrogant. I am being disobedient because I am tired. I need a break from medications, antibiotics and quite frankly ANYTHING Crohn's related. So I am doing it. I am taking a break for two weeks. I will still take my treatments but all this other crap is on HOLD.

Loading Dose Take Two

Being admitted in the hospital and having to get the resection surgery a month before it was scheduled was quite an ordeal.

It started as a visit to the ER. I was thinking the CT Scan my doctor ordered would show inflammation and I would probably be placed on steroids and sent home. Well, that would be too much like normal. My Ct Scan showed that the stricture and inflammation had gotten significantly worse and I was admitted on a Monday and my illeocecectomy was done Friday of that same week.

Recovery was going well until I contracted an infection four weeks after surgery. I would define it as a minor set back however while this was going on the diarrhea and bloody stool was not letting up. I was not able to take my regular treatment of Humira because of the infection.

So, here I am six weeks later, still a bit sore from surgery but finally able to take the Humira.
I begin with another loading dose. Four shots in ten minutes.
Lock and Load. . . . OUCH!!!!!

Negative

I haven't written much in this blog because I really don't know if I have anything positive to say.
I have tried to tell myself that I am strong and I can deal with this and I am capable and that I may be of help to someone else dealing with this but....
The downright truth is that I have no idea why I am suffering with this illness. I have no idea why the timing is now. I have no idea why it seems when I am finally at the top of the mountain I find that there is much more climbing to do.
It has been five months. In five months my life has changed and I am having trouble seeing any benefit in it.
That light at the end of the tunnel is looking mighty dim.
So right here, right now, I am embracing the negativity.
I HATE THIS FUCKING DISEASE AND HOW IT HAS CHANGED MY LIFE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I hate the pain, I hate the fatigue, I hate the nature of it, I hate the shitting, I hate the medication, I hate the surgeries, I hate it ALL!!!!!!!!!!!
Ahhhhhhhh, it felt so good to let that out!
Maybe tomorrow I can focus on something good in this.

Fatigue

One of the most difficult things for me to deal with right now is how debilitating this illness can be. I have a family at home and I enjoy cleaning my house while listening to music. I enjoy grocery shopping and cooking meals for my family. I enjoy taking long morning walks. I enjoy spending time with my extended family on Sunday's. These may seem like small pleasures to some but in my life these are some of the things I look forward to on a regular basis.

The fatigue that comes along with having Crohn's Disease has forced me to let go of these few things I enjoy so much. It is difficult to encourage myself and not feel like a complete failure as I sit in the bed, afraid to attempt walking down the stairs because I may become dizzy or faint or to have to lie down because my belly is in too much pain to do anything that requires focus on anything else except the pain. I have to send my five year old son away and tell him I need rest when actually I am just hurting so bad I am unable to make his sandwich or pour his drink.

On the days I feel well, I find I over do it. I am so happy to feel well, I try to get as much done as possible and sometimes wear myself out. I laugh and have to remember not to push so hard. I know it has only been a few months but it feels as if this entire year has been devoted to feeling this way.

I am supposed to be getting resection surgery. I am hoping that after I recover from the surgery I am able to get back to some form of normalcy. I hope I can get back to some form of activity and enjoyment.
For now I have to take joy in the very little I am able to do.

The Dilemma

I have been taking a biologic treatment made of human cells for a little over a month now. My doctor suspects that I am still flaring even on this treatment and she is going to do a colonoscopy to confirm her suspicions.
Here is the dilemma I am facing ...
The other treatment she is considering is another biologic, one that is made of live mouse cells. Now I know this may seem childish to some. Especially when my health is in jeopardy but, I just can not bring myself to take live mouse cells. I am deathly afraid of rodents. I can't even see a rodent on television without screaming and cringing. Just the thought of something of them being pumped into my body freaks me the hell out. I am hoping and praying with everything in me that the treatment that I am currently on is working because I am going to have a serious moment letting my doctor know that I can not bring myself to take the medication she is recommending.

Why Me? Why Now? Why This?

Yesterday, I cried. I cried for the first time since I was diagnosed almost two months ago. I think the reality of what is going on is finally starting to sink in. I think deep inside of me I felt like I didn't have the right to be upset about having Crohn's and everything seemed to be moving so fast that I didn't really allow myself to sit and absorb all of the changes that have occurred in the past few weeks.

I went from feeling wonderful about turning 40 and getting a physical and having my doctor say that I was in good health. It was my own personal birthday gift. I have been eating clean for three years now and  to hear that it has been working gave me this sense of accomplishment. My report showed no high blood pressure, no diabetes, my iron was only a little low but not dangerously low, I have good cholesterol levels. The only thing I needed to work on was getting to a healthy weight. I found the Paleo way of eating was working great for me. I lost 11 lbs in a month primarily juicing and eating lean meats, fruits, veggies and very little carbohydrates.

In a month, I was admitted in the hospital to find out I am not so healthy after all. The truth of the matter is that even though I was hospitalized for five days and told I have very severe Crohn's Disease, something inside of me just did not want to believe it. I did not want to believe all of what I was reading online and what the doctors were telling me about my prognosis. I seemed to think after feeling better, I should be okay, right? Oh the things we trick ourselves into believing.

Well, yesterday was my wake up call. I am still battling it out with Crohn's. Although I am determined to get better, I have to accept that it may take a long time. As I sat alone in my doctor's office, realizing that I have gone from a person who didn't even have Tylenol in her home to someone now dependent on six different medications just to get through the day without pain and the danger of a flare up, all of the emotion just filled up inside of me and I let the tears flow. Why? Why? Why? that is the only word my mind could think as I sobbed. It is the question heavy on my mind today. Why me? Why now? Why this?