Wednesday, May 29, 2013

Chronic Illness Meme & Johns Hopkins Preview

First I wanted to share a new meme discovery: chronic illness cat. You should count on seeing this guy a lot. He is wonderful.

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Second, I wanted to tell you about my upcoming doctor appointment. I meant to post way earlier in the day but now it's silly because the appointment is in like 9 hours. 

I'm behind my self-set schedule because physically yesterday and today have been very bad days. Yesterday was great going to the game, not so great that the Nats lost, but just took a lot out of me physically. I couldn't even stay awake past I think 8 or 9... And then today, my stomach was just... Ugh. So I just didn't get around to it. That's how this stuff goes in the life of a sick kid. Frame of reference: I actually had a visitor coming over today -- I never have that -- and I had to cancel because I just wasn't up for it. Fortunately my friends are loving and sympathetic about my problems. So it was a bummer, but ok.

Anyway... tomorrow is my appointment at Hopkins. This is the doctor whose approach to TOS is removing the rib AND the muscle, not just the muscle (as I had done). My surgeon told me he didn't see a problem with my rib, but since I wasn't getting better and he had no help to offer me, it was worth seeing if they saw something he didn't. (This paragraph reminds me that I have a draft started about my actual illnesses, really detailing what they are, what my symptoms are. I use the acronyms a lot, and my closest friends know what they are, but since I've recently learned people who don't know me that well also read --and thank you, btw-- I need to spell some things out for ya. Remind me to do that soon if I forget!)

Back to tomorrow, I've *really* been trying not to get my hopes up. Frankly, I don't feel anyone in the medical community has given me a reason to expect much. I specify in the medical community because my adorable father likes to tell me that he knows I'll be getting better, without even attempting a logic-based argument. Just cuz. He's sweet. Irrational, but sweet. So we know odds are very strong that nothing will change tomorrow, short of being extra depressed for a few days. Because if another doctor says they can't help me, that's inevitable. Or I could be planning another surgery... Who knows?!

A few hours will let us know. And you'll probably be third to know, after calling Dad and Moo.... Or I'll be lazy and you'll have to wait super late again like you had to for tonight's post.


**I'm posting this blog after midnight, so technically it changes my days, but when I said "today" I was referring to Tuesday and when I said "yesterday" I meant Monday. Just to clarify.**

4 comments:

  1. Replies
    1. Thank you :) I don't know who you are, but I still appreciate it!

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  2. Waiting patiently for my update and sending you good, loving energy mooey <3 <3

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  3. Do not be discouraged Shanley I have been going through the same process for almost 15 years. It is very frustrating I know. Your dad was great when I got to see him in October always so assuring to me I love him so much and am so very honored to have him as my Uncle. I could so tell you some amazing stories. Any who I was fortunately able to work through all of the stuff with my illness until 2008. About the time I saw you when my dad passed away. It devastated me and I shut down emotionally and physically my body totally gave up. Now I spend most of the day in bed. I take too many pills to keep count of and with cancer even more now. Cancer is an entirely different creature. We really do need to talk too much to put here. I really want to leave it to you to call only because I do not know your schedule and I wake up easily (you have to with kids). I do so miss you all. I wish you the best of luck I know I wrote way too much in a comment. However I needed to let you know I think your blog is amazing and brilliant just like you my dear!

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