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Am I Crazy?

It’s been a rough week few weeks. On June 7th I was sitting with my friend watching something great on TV and my hands started itch, shortly after I finished a Red Popsicle. It was the compromise for sweet cravings exacerbated greatly by steroids, both Prednisone and Budesonide that I use to treat my Crohn’s. As we say at my Crohn’s and UC support group, if there is a cookie or sweet treat hidden anywhere in the house, on Prednisone you will find it.

Red Dye # 40, a Red Popsicle took me down into anaphylactic shock. Soon hives were breaking out all over me and my insides were turning inside out. By the time I got to the Emergency Room, my throat was closing and I was less than a few hours away from asphyxiation and chocking to death. I now have EpiPens to keep me alive until I get to an ER if I accidently ingest the charcoal-based dye banned in most countries but the United States, the petroleum based cheap red poison red dye also causes behavior problems in many children.

The allergic attack triggered a Crohn’s attack that slowly took over in the following weeks, along with some unknown issue causing me to burb and release tremendous amounts of gas out of both ends, if left untreated, it also leads to violent vomiting. I ended up in the ER for the 24th time in the last 20 months since diagnoses in the Fall of 2017. It was my 14 time be admitted.

A concert of events led me to this. First, I ran out of my Aloe Vera-other natural anti-inflammatory supplement. This helped prevent a Crohn’s attack in the most stressful moments of my life, the sudden death of my brother and flying to California to put him to rest. In the middle of this attack, Medicaid cut me off without warning due to a paperwork snafu, which added extreme stress, no longer able to pay doctor bills, medicine and especially the $7000 Entivio infusion I was turned away from.

Five days in the hospital, my GI doc wanted me in days earlier because Crohn’s attacks my appendix, which was swollen to the point of not being able to stand up straight. I was trying to hold out until I got my Medicaid straightened out, a futile effort when I got to the point I was throwing up and couldn’t ingest anything including water. Now I have thousands and thousands of dollars in bills, that Medicaid will pay if reinstated.

I signed up for Entivio’s compassionate patient care program, covering my bases in the event Medicaid takes 30 to 90 days to resolve, which is unfortunately not unusual. My doctors are bridging the with steroids until Entivio gets back in my system, one way or another. Humira was working fine until I went 5 rounds with C-Diff, which tells me that it might work now. I have four doses, enough for a reintroduction and 2 weeks. If the Entivio works out, all the better. Since Humira fights off the front-line soldiers, and Entivio takes out the replacement soldiers, this combo therapy has been working great in recent studies and promoted by the local Entivio rep. But my doctors are great, but not ready to experiment with me. The Doc at my support group uses the soldier metaphor to explain how the drug works, it is very over simplified, but works.

Next Tuesday, 3 days out of the hospital, I’m scheduled to go to Seattle Washington for a conference on the Univera supplement products that I truly believe are making a huge impact in my life. This is an opportunity to network internationally with others and the founders of this product. We also get a tour of the multi-billion-dollar lab where the products are developed. The marketing is simple. Share it with others and if they like it, great, if not, no assumption, pressure or worries. They do work for most people, who actually use them. I can think of no better path than to help people with Crohn’s or other issues to get healthier, giving the body what it wants and often needs, natural and good for most people’s health.

My GI docs would freak if they knew what I was doing. One of the docs in the hospital agreed that I should go and live the life where the I refuse to be defined by my disease. He felt my passion and conviction and was inspired by me.

This crazy gas problem I have is being managed by Gas-X and prescription anti-nausea meds. I’m took a SIBO breath test, I mailed in today which will determine if the undetectable by conventional stool and blood tests intestinal infection is the causing the gas explosions.

So, will I get my 6K to 7K of medicine each month or go to the ER, lose my intestines and never again be a productive member of society? Keeping me away from treatment will cost the government 100 times more than covering me with Medicaid and giving me a fighting chance to go back to productivity and be active in our still and not newly great country.

So weak, when I can go to this amazing event, dangerously walking outside the lines, defying my disease and hopefully not heading to the demise of my experience. Good news is that I am going with an amazing lady I’m getting to know and beautiful possibilities are there.

Since my psych meds will run out tomorrow and no money to get an expensive appointment and refills. If I don’t at least try what I have saved for and paid for the last 6 months, then home, falling into the abyss of more disappointment and no resources to cope. Or I go, and maybe can’t do it all, but at least I will fight for all I can get and exploit it into bettering myself.

I just have to keep my health front and center and rest when I need to and always know where multiple bathrooms are. I’m looking forward to meeting a bunch of great people and getting selfies to take back to the hospital and thank the staff for making it possible with their amazing care.

Pharmaceuticals have saved my life many times. But the side effects have been a large toll to pay. Prednisone caused me to go blind, fixed with cataract surgery. My calcium never got to normal levels no matter what supplements I take. My teeth are the biggest losers so far, even though I faithfully brush, floss and use mouthwash.

I’ve learned that it’s not what I lose, but what I gain in motivation to never stop seeking to be the healthiest physically and mentally I’ve ever been or at least as close as possible. I can’t accept this new normal and when I meet myself where I am, I don’t like it. I might be in some denial, but looking forward keeps me going, now and tomorrow is all I can change.

I know I don’t have it as bad as many and I don’t feel sorry for myself after another 5 days on the Cancer ward, where there are hospice patients and others in real life challenging circumstances.

I want everybody to be as healthy as possible and find we can all keep growing no matter what life slams in our faces.
I don’t really understand why you think that you may be crazy.

Is it because you want to travel to Seattle while in a flare?

I don’t see why not. You’re a grown up.
First of all, thank you, I am an adult and ultimately I have to make my own choices, and blind faith in anything is dangerous.

3 out of 5 of my docs want me passively at home, waiting for Entivio. But now that I'm in Washington State and using an aloe product that has the healing elements and not the laxative and other natural anti-inflammatory plants, all is good. I actually feel better than I expected, staying on a low residue diet. I know it was a little crazy to go from flaring in a hospital to traveling three days later. If the aloe and other products didn't work, I owuld likely be in trouble. I also got back on Humira, which I was told not to. My docs believed it didn't work, but I know it does, the C-Diff I had 5 times was the issue, not the Humira. And combo therapy with Humira and Entivio is highly effective, my docs, as progressive as they are, still haven't embraced it. I had 4 doses, still good, in fridge and yes it is working. I didn't participate in the nightly events, going back to rest and sleep each night. The last night I told my friends, this is when the old Mike knew the party was just getting started, but the new Mike knows it's when the party ends.

So, I felt crazy not following the advice that has been helping me for so long. But I also know that crazy people that think outside of the box and not care about what the crowds say are the ones who change the World. At one time, saying the earth was not the center of the Universe would get you jailed and tortured.

I did struggle with my doubts and almost missed my flight, but pushed through and when I go home tomorrow, I will schedule the Entivio that I got hooked up with through their compassionate care program.