Since we last met

im sorry, I’ve failed a lot of people but I wish I could have been more here. I let a lot of the crew without my help. Things have sucked.

I thought I had CFS and a few other diseases, my list has increased and I’ve barley survived 6 life ending situations.

My disease and dr list is long and what it takes to keep me alive is long. I started a business teaching patients how to run their disease like a business and fortunately or unfortunately I had to close this business because I just got two sick. I’m too sick to even do what I consider the most basic things a lot has also changed in my medical situation at first we have no real idea what was going on now we are starting to see things that no other doctor has seen.

My primary immunologists Says it’s like being biased astroid while being bit by a shark. I’ve spent many days in ICU I’ve had six or seven more surgeries. I’ve had several super viruses one that’s only thing to seen in Afghanistan dirt.

This is a new List of things that it takes to keep me alive every day.

2 breathing tx 3 times a day,

2 breathing nebulizers 3 x day,

14 meds x day,

3 infusions of ivig that scramble my brain every 3 weeks so that’s a week in bed,

1 chemo Retuxin (chemo lite) every other month( week in bed)

liquid Valium for emergent stiff person attacks (daily attack’s in hands, 1 major enough attack per week to require this),

1 iv of 1000 ml fluid every other day, 3 tx of ruconest a week. no side effects for this it reduces inflammation, I can’t see tendons in hands until I take the iv then it helps for a day and reduces my crp and c1a or inflammation.

1 sterile site swap of accessing my port (needle into the chest that stays all the time, have to wear a seryan wrap to keep dry.

No visits to ER, if I go to the hospital it’s straight to ICU because the last er dr said I’m too complicated to be treated in ER.

Here are drs, Pulmonology, iummune, wound care, hemotlogy, pain, pcp, pulmnology, nuerology (stiff person specialist, sleep, seizure) endocrine, cardio, ENT, immune, GI, thyroid cancer, thyroid, nutrionist, infectious diseases, urologist etc

3 I see monthly, all the supplies required to swap and manage this.

The two biggest pieces that they have found is a auto immune version of stiff person syndrome. The other rare disease is called sarcoidosis they have found it on my thyroid as well as my lungs.

It’s OK if you haven’t heard of those diseases not very many people have in fact I’ve never met a Doctor Who didn’t know enough about it to make quick decisions without going to google first. I’ve been to the mayo clinic which was the worst experience of my life and I’m more than happy to explain why off-line for that. The funny thing is they called me crazy before I went in. And then the psychologist left me saying I can’t believe you have all these diseases and you’re as happy as you are. If you committed suicide I wouldn’t label it as a mental condition I would label it as a side effect of the diseases.

Mayo clinic then had to change their opinion on me to being a medical problem that required me to stay for five weeks on my own dime in a hotel that’s connected to that clinic that gets to kick backs from the clinic.

I’m happy to answer any questions you guys have gad 65 was the start of my staff person syndrome followed by the muscle attacks that tore my labrum free from the hip, collapsed three lobes of my lungs, caused a DVT in my leg with PEs floating around.

Luckily the best drs I could ask for a live are where I live, And my wife has stayed with me even though she was promoted multiple times and works with one of my friends who happens to be one of the richest people in my state. Not that I’ve ever asked them for money but she is amazing. She helps manage my time and she keeps all my doctor and medications on point.

There are multiple different kinds of insurance depending on the medicine and some have to be compounded because they no longer manufacture the medicine but luckily my doctors have a plan of treatment plan to help.

The scary thing is the last thing that my Doctors specializing in stiff person said to me was that this is a degenerative disease and will not get bette. If u have any Questions you might have I am willing to answer. I have had every test done to me. I have also been DNA checked for damage and any proclivities I have had to the diseases that I have. Miami urologist and wife have save my life multiple times. I’ve had to use the fire service and paramedics. I’ve lost 180 pounds and now I’m losing muscle due to lack of Hunger drive.

We are extremely tactical and always take every doctor appointment as a chance to move forward sometimes it moves us backwards. Right now I’m waiting on surgeries on my thyroid, bladder also .plasmapheresis and a bone marrow transplant to create stem cells that will be put back into my body. Unfortunately the clock is moving the and we never know when a stiffperson attack will kill me.

This really is an amazing and I appreciate everything you guys did for me once again I’m sorry I’m not more involved

Comments

It's pretty amazing that you can write at all with so much to deal with (fending off asteroids AND sharks.) What a crazy list of things. Thanks for posting.
 
Firstly, you’re a brave person to manage to get up and address all your issues. You deserve a medal, at least, or a windfall of success... . I’m considering the Mayo Clinic but you, experienced with it, aren’t so keen. Can you pm me any cautions or concerns? Thanks. ‘Hope you feel better.
 

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