Dear Lord,
I've missed like 4 days of blogging or something because I'm so crazy-busy....but I want to be thankful for 5 things every day so I'm going to catch up a minute. I know You know I'm thankful everyday, but there is a lot to BE thankful for! SO: I am thankful for 1.fuzzy puppies 2.sleepy, cuddly, 5-year old sons 3.my parents 4.my husband who helps me make feathered hair clips, 5. other MG-er's on the internet who know way more than any of my doctors (see following letters) 6. my brother and sisters 7. my sistah from another mistah 8. peanut butter m&m's 9. pizza 10. the color purple 11. Tim from verizon who was actually helpful and even saved me ten bucks a month 12. electricity 13. my phone 14. jewelry orders 15. hand sanitizer 16. bleach 17. anti-bacterial wipes 18. Jacob's fishies 19. my paper shredder (yes, really) 20. MY READERS!!!!
Sincerely,
Your Thankful Daughter
Dear FDA,
I don't know how, but I'm about to take you on. People like me need double lumen implanted ports for plasmapheresis. But YOU don't approve it for plasmapheresis. Well, I don't know how to change that, but I'm going to find out, and then YOU will find out I'm like a hungry done with a bone who will. not. let. go. or. give. up. You arbitrarily say "yes" to this and "no" to that without having a clue whose lives you are effecting. And don't think for one minute that I believe everything gets tested to the "N"th degree and THEN decided... I think it has more to do with whose pockets are deepest. {I should add to my above list I'm thankful for the 1st Amendment so my butt doesn't end up in jail for criticizing the government}. I will hound you and cause you grief. Be alert. I am here and I am not leaving.
Sincerely,
Completely Irritated at Government Control Over MY Health
Dear Medical Professionals Everywhere:
YOU are the doctors. I am the patient. I should not be telling YOU what procedure I need, or what product, or what medication. That's why YOU went to school for 8 years and have huge student loan debt and ridiculous malpractice insurance rates and make a sh!t ton of money. I, on the other hand, did NOT go to medical school, and don't really feel it is my place to tell YOU how to treat ME medically.
Sincerely,
Might As Well Call Me Doc
Dear PA From Interventional Radiology,
Thank you for being helpful yesterday. It was an almost useless visit, since someone could have told me on the phone that I couldn't get done what someone had scheduled me to get done 2 months ago. Good thing I was sick and didn't make the appointment, because Lord knows what you would have done. As I was telling you what I needed, and how it's done, and where it's done and who has it done already, I was thinking in my head pretty much everything in the above letter. I go to YOU for information, not the other way around.
Sincerely,
Irritated That I Know More Than You Do About Your Specialty And Can't Get Paid For It
Dear Medical Community In General,
I simply have two things to say to you. First, COMMUNICATE with OTHER PEOPLE in the medical community, especially when you are ALL INVOLVED in the care of ONE patient. Second, please don't go to work if you DON'T KNOW WHAT THE HELL YOU ARE DOING.
Sincerely,
Someone Who Would Be Really Thankful If You Did The Above
Fighting this disease called Myasthenia Gravis (MG) with a little humor, some good friends, and a lot of help from Above.
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2 comments:
Awesome post Kerri! I hate you went through it but it so completely explains how it is on our side of the fence.
Lots of love,
Jen
Just found your blog. I was just diagnosed with occular MG. Glad I found you :) I found you through Sits Girls.
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