I wish people always told me plain and simple truths. Not a spin of the truth. Not a possibility. Just unvarnished reality. I keep bumping into this problem. It’s hard to know who to take at face value. I’ve noticed that folks promise stuff without the intent to follow through. Whatever is important to me is not at all as important and timely to others.


Over and over I get all excited…but just give me time and I will soon be deflated 😦 For example…I just got an email from the wheelchair guy. They still don’t have the final OK for my wheelchair and have not ordered it yet. When I last talked to him, he thought the chair would be delivered before the 15th so I could switch insurance companies. Today he says “Sorry for the confusion. Insurance already reviewed it and now that all the paperwork is done they have to review it one more time. The chair only takes three days to get in if we don’t already have it in stock. we are just waiting for the final approval through the insurance company.”

Why didn’t he tell me the truth the first time? It would have been easier on me! Did he think he could push it through quick without disclosing to me that the deal wasn’t done yet? It’s waaaaaaaaaaay easier for me to deal with the truth.

It seems like everyone I interact with does the same thing….promising action just to appease me, then letting it slip to the bottom of their to-do list. The surgeon hasn’t found me a neuro, a local organization has not followed through on most of what they promised and well….I just don’t want to name them all off. I am sitting here crying because I want to be cared about enough for people to take the actions they promised. Please…..don’t even mention things to me unless you mean it!

I just got back from a regularly scheduled visit to the GP. He had a med student working with him today. The student grew up in Hong Kong, so we chatted about China and Shanghai. He speaks flawless English…with no accent…plus Mandarin and Cantonese. I liked him 🙂 He had never seen the iPhone app that translates Chinese characters into English. He was as amazed about that as I am. Heather uses that app now that she lives in Shanghai. It gives amusing, but mostly decipherable translations 😛


After the GP talked to me for a couple of minutes, he told the med student to check my vitals and figure me out….and he left. The med student looked slightly panicked, but we had a good time talking for about an hour. I told the guy he could do a whole study on just me. By the end of the hour, he was thoroughly convinced that was true. Like dozens of docs before…he was amazed at my upbeat attitude. He said everyone else with even a fraction of my problems gets depressed, gives up and dies. I didn’t tell him I have my days.

When the GP came back in, he taught the med student how to do even more tests on me. Mostly, neither had a clue what to do about anything wrong with me except hope for IVIg and give me steroids. They also asked where my new power chair was and called the company. The wheelchair guy had told them a month ago that I would have the chair in 2 or 3 days. I guess he just lies as a matter of course.

The GP plans to request my ER paperwork from a couple of weeks ago. He, too wondered about a blood clot in my lung. I’m still alive….so how bad could it be? Then both docs felt my feet and hands to see how my Ledderhose/Dupuytren’s is going. Now my hands and foot hurt 😦 I don’t think it’s good to tick off that disease. Ow. The manipulation also got my hand arthritis mad.

I got a script for 3 more months of Medrol. Ahhhhh…..steroids. The GP claims he has no knowledge of what the NP is doing towards making the IVIg happen. The NP wasn’t working today. Being randomly assigned one provider or the other is going to get confusing. The GP and med student kept discussing my MG, but it’s come down to basically shaking their heads and throwing their hands in the air because they don’t know how to get what I most need….IVIg. The pharmacist had his sidekick today. They said I looked worse than usual and that I was drooping more. What do I say to that? Thanks? 🙂


I think I look like a zillion other droopy pics of me…except my face just keeps getting rounder and rounder. I do notice that my mouth looks a bit more drooped. I cannot smile on either side. I need to get out of Utah. Treatment that I most need is never going to happen here 😦 This state is killing me in a whole bunch of ways.


Olive doesn’t believe in asking. She is the center of the universe. I watched her walk up to my covered cup, stick her tongue inside the lid and carefully drink water! That little shit! She had a brand new bowl of water on the counter. So much for being cat proof.