I am not sure where to start with this one….They say (whoever “they” are) you should then start at the beginning…hmmph. I don’t know about that.

Maybe the present is best then.

I currently sitting in a recliner while a medication is being infused into my system that brags of “positive effects” on my disease while admitting to a list a mile long of negative potentials that could also occur.

It is not like a chemo where all the good cells get destroyed along with the cancer cells, but it is like being pumped full of some kind of toxin that should make me feel better as long as I don’t feel worse from the side effects first.

I am being introduced to the new reality of biologic living.

Not to sound overly dramatic, but I am literally sitting in a chair where I have given permission for my immune system to become compromised in order for my autoimmune system to work and my Crohn’s disease to be effectively managed.

I am not being cured – I am being treated.

I am officially attached to an infusion center for the rest of my life.

Wow.

Many people have bigger struggles in their life…but this is huge for me.

Other people do this sort of thing…not me.

As with so many other blasted areas in my life right now, I am sitting here shaking my head wondering how on earth have I gotten here to this place??

Leading up to this day of infusion, I have traveled through many different stages to get me towards acceptance…denial (no way am I really this sick); anger (I cannot and will not believe this is my life); sadness (the amount of tears I have cried could fill a Great Lake); and finally acceptance ( I will do what needs to be done).

Too much information may be coming!!!

So, as previously mentioned, I have Crohn’s disease. As a 14 year old all that meant was that I had stomach pains all the time and needed to go to the doctor a lot to figure out what was wrong.

At the diagnosis, it meant I had something wrong with me that I never wanted tot talk to anyone else about EVER.

“Why did you miss so much school last week Amy?”

You really think I was going to tell the cute boy from 9th grade English that I missed school because of my bowel disease????

Trust me that has NOT changed even though about 3 decades have since passed!

Crohn’s disease -in a nutshell- means I have an irritated and potentially angry GI tract that becomes inflamed which causes severe to moderate pain with poor absorption of essential nutrients.

Frankly, my stomach hurts 24/7…all the time…every day for 30 years.

I just get used to it.

When it gets to the point of me complaining of discomfort then it means that things are pretty darn bad. If I get scared because of the pain or other symptoms it is because it has gotten pretty darn bad. If I start to talk about the fact that I even have Crohn’s it is because things have gotten pretty darn bad.

Here I am. A pretty hot mess.

I have a chronic illness that I cannot hide, contain, or control.

The other day, my new friend -Felix Fistula – decided to let me know he was going to hang around for a while…the fun thing about fistula’s is that they like to come and go completely unwelcome and unannounced.

His arrival sunk me into the reality of where I am going to be for the rest of my life…spending quality time in an infusion chair.

Now, I highly anticipate that the fistula will heal (hopefully soon!) and I am claiming against possible side effects from this medication that is treating me, but I will be doing this kind of treatment every 8 weeks for the rest of my life. I may not need oral or topical medication anymore (praise the Lord for that small mercy) but I will need an IV plus 1-3 hours of my time every 2 months to achieve and maintain remission.

Upon arrival to the infusion office, I could feel the pressure of tears threatening to make their appearance…and then the headache came as I suppressed them- unwillingly to show weakness at the surface level.

I don’t think I said “I don’t want to do this” today, but there was that blasted “how is this happening” question formulating in my sadness…in my acceptance.

After an escape to the restroom to release the steam out of my teapot (yes, that means to cry), I sat back in my chair and decided to just be there.

This is where I am.

Wishing for something different will not change my situation so I might as well figure out how to be in my situation.

When it was done, my “ride” (she knows who she is 😉) said “well, now that’s over”.

We were able to have a good discussion where we could both say “no, this is where it begins”.

I guess that means I did start at the beginning after all.

Trust in the Lord with all your heart and lean not on your own understanding~Proverbs 3:5.

1 Chronicles 16:12 ~Remember what He has done.

It’s where we go from here.