#ShowMichaelTheWorld – The Story Behind The Hashtag

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To sit here and write about something that is my reality every day is kind of hard. It’s one thing to live it but it’s completely different putting it into words.

I guess to start; Michael and I have been together since December 27th, 2006. We met online, of all places, via our own individual blogs almost a year prior and what started out as a friendship progressed to me falling in love with the most wonderful and kind-hearted soul I had ever met.

Now, Michael has Type 1 Diabetes Mellitus. He was diagnosed with that as a child and up until about 8 years ago, he had great control over his sugars and such but as with all type 1 Diabetics, it does eventually begin to take its toll on the body. Mainly because as we age and our bodies change, we just can’t keep up with what Diabetes does. Michael is not only a Type 1 but he is classified as Brittle.

Brittle diabetes is a sub-type of type 1 diabetes. Brittle diabetes mellitus (or labile diabetes) is a term used to describe particularly hard to control type 1 diabetes. Those people who have brittle diabetes will experience frequent, extreme swings in blood glucose levels, causing hyperglycemia or hypoglycemia.”

So to sum that up, he has next to no control over what happens with his sugar levels. He is on an insulin pump but that does not even work like it would on the average Diabetic. This is the most difficult form of diabetes to have. It does not matter if you have counted your carbs perfectly. It doesn’t matter if you check your sugar every 30 minutes. Being brittle just makes it incredibly hard to regulate his sugars.

Over the course of the last 9 years we have been together, I have watched Diabetes take over Michael’s world. Believe it or not, during these 9 years, Michael has had well over 500 ICU admissions due to the complications of diabetes. The complications have been horrific to say the least:

Gastroparesis – aka, delayed emptying of the stomach or the Paralyzed Stomach. I like to describe this as a sink that backs up. If it does not empty properly, he becomes violently ill. Just to be able to digest his food, he has to take pills. They considered a gastric pacemaker that would enable him to digest better but Michael isn’t a candidate for surgery.

Cyclical Vomiting Syndrome – Yikes I hate this one. This means that he begins vomiting, uncontrollably and cannot stop. There is no rhyme or reason. It can start simply because he is having a great day. Stress, good and bad can trigger it. The only way to treat this is with acid and nausea pills. This is the one that scares me the most. Michael is NOT a candidate for surgery because of his bleeding risks so if he vomits and happens to cause his esophagus to tear, we are in a world of hurt without a lot of options.

Congestive Heart Failure (CHF) – This means for whatever reason Michaels heart was weak causing it not to function properly so he began to accumulate fluid in his lungs and around his heart.

Cardiac Arrest – Yes, the good old Heart Attack. Michael has had 6 of them. 2 Major and 4 minor.

Barrett’s Esophagus – This is a mutation of the esophagus. It means that he is producing Gastric Acid in his esophagus instead of his stomach only like the rest of us. Now, the doctors cannot make up their minds as to whether Michael has this particular condition. He has been diagnosed 4 times and had the diagnosis removed each time. Very odd. The reason is simply because they see it and then they don’t. I am still confused on this one. This one does scare me because if they decide that he does in fact have this complication, it could escalate into stomach cancer.

Diabetic Neuropathy – Michael mainly suffers from Autonomic Neuropathy, which if you had to choose between one of the 4 types, this is not the one you want. Autonomic controls your body’s homeostasis. It runs everything! This is why Michael’s internal organs are taking such a hit with his diabetes. His brain does not get all of the proper information from his organs because the nerves are damaged. Michael also has Peripheral Neuropathy. This is when you get the tingling in the feet, fingers, etc.

Diabetic Retinopathy – Due to his condition, he grows extra blood vessels in the back of his eyes. These blood vessels are not strong and tend to burst and when they do; his eye socket fills with blood. They usually have to go in with a laser to kill off the blood vessel then he has to wait it out on the blood settling again so he can see. It isn’t life threatening but it is a pain to contend with when it does happen.

Now with all of those conditions hitting him on a regular basis along with being a brittle diabetic, that is why he is slowly but surely breaking down.

Things really got bad for us 7 years ago. When he 1st began to have these more serious complications, he applied for Disability. He was denied, which we expected since Diabetes isn’t an approved condition, but I never expected to have to fight as hard as we have to get what he rightfully has earned considering the complications alone basically keep him tied to the house. But, when he was denied the 2nd time I was shocked. He was denied because our system sucks. Just being blunt. They are so far behind on their case log that Michaels hearing was with a judge based in Albuquerque, NM instead of Kansas City, Missouri. This judge went against her own panel of people who all stated there is no way Michael can maintain employment based on the amount of time he has been hospitalized as well as the time he is sick before being admitted as well as how much time it takes to recuperate after getting out. Basically, she saw a guy sitting in front of the camera not looking sick. That is the stigma with his condition. It affects the insides, not the outside so while he looks like not much is wrong; his insides look like a nuclear blast took place. Michael was finally awarded Supplemental Social Security (which isn’t fair…) on June 27th, 2006. That was almost 5 years after we started the process to get Disability. Michael was not awarded full disability because of a loophole. It took 5 years to get him through the system and they held it against him. They said he didn’t have enough work history in the previous 10 years. DUH..How could he when we spent 5 years trying to convince you he couldn’t work? I am still bitter about it. We struggle just to make it every month. I work full-time and then I have a small side business of art and photography I am trying desperately to get up and going. It would mean the world to be able to work for myself with all of the complications and appointments that Michael has. One day.. One day!

I wrote senators, Sam Graves and Claire McCaskill, and they really didn’t care. All I got in return were form letters showing they were checking into it but I never received a personal response or a call even though I begged for one. Diabetes isn’t hot news that will get them photo-ops with the media. In talking to the media, “Social Security is a dying issue”.. Yeah it may be a dying issue to the media but to the millions of people out there battling what we went through, it is far from a dying issue. It is sad. Social Security and Disability in this country is a joke. The system is broken and needs to be fixed.

Michael is on a ton of meds daily just to keep him “surviving”. However, I am very anti-pharmaceutical and all I see is these meds cause more problems than the disease itself. And when you factor in that it takes millions of dollars (exaggeration but you get it) just to be able to eat healthy and everything is loaded with preservatives and all sorts of things that are systematically killing this country.

Here’s the deal.. I am HEART BROKEN!!! Michael is my absolute best friend. I love him more than I know what to do with. I hate that all of the dreams we had when we first began our journey together have been systematically taken away by his disease.

I feel like so much has been taken from us. Michael and I married on July 7, 2012 and we were divorced on October 8th, 2013. Divorced you say?! Yes, it is true. We were forced by this unjust system to divorce. Once he was approved for his supplemental, we had only been married 3 weeks. They were well aware because you have to notify them every time you take a breath. They apparently forgot to check a box saying we were married so Michael’s benefits he received they claim he never qualified for from the time of his approval all the way until we filed for divorce in May of 2013. So we were considered one therefore we didn’t need that money. Say what??!! This system is horrific. How we go from struggling to married and married meaning we don’t need income is beyond me. So in order for Michael to keep his benefits, we had to divorce. At least we had a really nice judge who listened to me cry during the proceedings as we did our own ProSe divorce. It killed me you know. They have taken everything from us. Sure its just a piece of paper but that piece of paper meant the world to us.

Yes, I am bitter….

We live minute to minute and day to day. We generally do not make a lot of plans because there are so many times we just cannot fulfill the promise of keeping those plans. I cannot count the number of holidays and family get together’s Michael has missed. Just too many! Hell it was Father’s Day yesterday and my husband was in bed because the pain in his stomach was just too much to bear. It’s extremely sad.

Michael feels like a burden in my life and I hate that but I understand why he thinks that way. I wish I could convince him that he has never been a burden and that word will NEVER be in my vocabulary as a definition of who he is. Michael is NOT his disease and that is something he needs to remember but I guess when you are living it every day, it would be hard not to think of yourself as a burden.

So that is pretty much us in a nutshell. Michael and I both knew that as time went on, his body would begin to break down and not deal with the diabetes as well and it seems as though that is where we are at. He really feels pretty badly. The stomach pain he experiences is overwhelming. He has been going through Celiac Plexus Blocks to try and help but from the way it seems, this may end up being a monthly procedure.

We have no idea how much time Michael has left but one thing I do know is this, whenever it is, it’s too soon and I’m not ready. This man has too much good to offer the world and I am unbelievably sad that he won’t have the opportunity. I am sad that the struggles we have been through with the system were so ridiculous and I truly believe helped aid in the decline of his health. Stress isn’t healthy and stress can kill.

I hope that anyone reading this and either has diabetes or knows someone with the condition, makes sure to take care. I never knew until Michael just how deadly this disease is. It’s a slow killer that 1st robs you (without a bandana or gun mind you) of your life before ultimately killing you. So take care! EAT RIGHT!! CHECK THOSE SUGARS!!!

Oh… I really hope this helps someone!

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