Painsomniac

Oh, my.  I am the worst at consistency with posting. I think it is safe to say I’ll post when I can.

This post comes with multiple days and many levels of exhaustion. I hope it all makes sense.

Well, it is 4:34 a.m. on Tuesday morning.

I have a photo shoot today and I hope my undereye circles don’t show too much.  I get the worst case of insomnia almost every night.  I have way too much on my mind.  I did nap today, surprisingly, but I cannot fall asleep for the life of me this evening.  This morning.  Whatever day it is.

So, yeah.  If you follow me on Facebook, then you already kind of know that this week has been one big massive mess.  One thing after another, after another.  I am constantly being lied to, especially as of late.  I constantly being censored and told how to feel, what to share, what I can and cannot do.  I know I’m very vague about these topics, but no more.

This past Sunday I was admitted into the Eastern State Hospital after the police were called to my house.  Not once.  Twice.  They entered my home after asking and being told no.  They walked right in.  And one officer thought it would help to scream in my face only inches away.

They were called for a suicide attempt, my sister called them after seeing and witnessing most of the evening’s fight.  That seems to be what we always do.  Fight.  I talk to her daily through Facebook messenger, we video chat for hours sometimes.  I call her when I get upset and she calls me when she know’s something is going wrong.

I messaged her that I might need her, and she’s there.  She watches, she joins in the screaming, she tried to make sense of it and she tries to calm me down.  Sometimes nothing can calm me down.  Once I am in that emotional state, I tear myself down, I come to conclusions and I am unstoppable.

It felt like hours of arguing and fighting.  It began in the car on the way home, and it somewhat continued until this afternoon.

I went ‘Live” that night during the argument, but the video was deleted from MY account while I was being held against my will in the hospital.  I was taken from my home around 11 or so, and I was picked up around 5 a.m. and taken home.

I was handcuffed and put into the back seat of the cop car, even though they told me I was not in trouble.  I was mortified.  I was scared.  I have never been arrested, I have never even been pulled over, I have never had this situation happen before.

In the hospital, I was being monitored every 30 minutes or so, forced to sit in a common area style room that I could not get out of.  I had to sit and listen to a girl talk about her step-dad assaulting her, her pregnant with his child.

There was a gentleman who had to be removed from the room because he was saying that our sadness was making him too sad.  It was a terrifying experience.

I sat with the paper-like-material scrub set they had me change into, after having to undress and have photos taken of me. Even the bottoms of my feet were photographed. When they asked for my social, I gave them my last four only, so they yelled at me too.  It doesn’t seem like the right thing to do to someone going through a mental health breakdown. The attitudes of the officers and personnel at the hospital was beyond intentionally mean.

I spent hours sitting in a bright room and tried to sleep, but no avail. I was let go hours later, only to go home and continue arguing. And when I woke up the next morning, more arguing ensued.

And that’s the point of writing this blog that I fell asleep. I didn’t start the third blog again until Thursday evening. I had intentions of finishing it but I had to write my latest IBD News column first. This week’s topic was Crohn’s Complications Part Three: Bowel Obstructions.

Some people have made assumptions on ‘why’ we fought, and I’ll tell you what happened if you really want to know, all you have to do is ask me. Don’t passive-aggressively text me.  Don’t try to shame me.

As for me, I’m trying.
Trying to be happy.
Trying to be me.
Trying to let go of the past.

So, lately, I’ve done more photo shoots to help my confidence. I’ve done shoots to meet new people. I’ve done shoots to go see new places.

I’m pleased with it all! I also called the VA blood lab and spoke to their manager. I’ll send in my application and then we wait for the background check to come back. I  am more that ecstatic for the opportunity! To work at the VA, to keep my hair, to be me! Ecstatic.

And GI? I called daily until I received a callback. Dr. S had apparently ordered Stelara but the pharmacy denied it. The pharmacy suggested Entyvio, the first and only drug created specifically for Crohn’s disease and Ulcerative Colitis, and Dr. S was consulting another GI specialist before prescribing it.

Entyvio, it would be like Remicade in that it comes in infusion form. Entyvio has a much shorter time with only 30 minutes or so compared to the hours it takes Remicade. This medication, Entyvio or Vedolizumab, it targets specific areas and helps to calm and heal the inflammation. It begins with loading doses on week 2, 4 and 6, and with infusions every 8 weeks after.

She also would put in a consult for primary care and for dermatology. I am still convinced I may have fibromyalgia and hidradenitis suppurativa or lymphadenitis since I hurt all over quite often and I have had at least one swollen lump in my armpit for months.

I’m still puking with bowel issues. Each day I swear I lose more blood. I get tender to the touch and my head has pounded for days on end.

My lump in my left wrist stays sore. It is almost like a dense bubble of fluid.  It hurts enough to keep me awake at night.  That is if I didn’t get insomnia so much already.

Here lately, I’ve been up all hours of the night. I keep tossing and turning, so I take my medicine and lie on the couch. I usually pass the time and get online until I start to feel sleepy.

Like tonight, or I should say this early Friday morning. It is now past 4 am here, almost 5 am and I have not been to sleep for the night. Yesterday I was almost awake for 24 hours. The day before, the same.

And in between the chaos?  Things like a beer cheese festival, loads of coffee, and another Phoenix course is coming to an end.

That’s right! Starting Monday I am in my last course! Only 38 days away! Hallelujah!

Now, I know it’s late and I hate to bombard you with multiple posts but its morning and I’m finally getting sleepy. Perhaps I’ll finally get some rest.

It Could Be Worse.

Thank you for reading, and for keeping up with My Crohn’s Journey. Please Like It Could Be Worse Blog on Facebook!

And as always, any information you’d like to offer up about Remicade infusions or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!

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CURE for IBD:

For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds WE raise will be allocated to IBD research for a cure. That’s right, 100%!!

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www.cureforibd.donordrive.com/campaign/icbwblog

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IBD News Today Column:

Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley

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