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It's getting to be not funny any more
So I'm booked in for the Stroke Clinic on Friday. I'm freaking 31 years old and I've had a stroke. What the hell. I'm at the point that I'm having some sort of medical crap going on constantly and am at a hospital for something or another at least 2 times a week now.
The stupid steroids have given me "Moon Face" and "Buffalo Hump" - my face and neck is super swollen and I have a hump back now. Yes. Just call me quasi farking modo. I haven't yet developed an obsession with bell ringing but I'm sure it will come up soon. So not only do I feel like crap, I look like crap too. Swollen, puffy, Michelan Man crap.
I haven't laughed about it yet today. I tried, but it was a pathetic attempt at best and all I want to do is cry and scream out "why me".
I hate this.
Pity party, table for one. In the back.
Chronically hilarious - you'll split your stitches!
I wrote a book! Bucket list CHECK!
Re: It's getting to be not funny any more
FWIW, sometimes it makes me angry at the world on your behalf.
You are awesome, and the fact that you can laugh at any of what has happened to you is a-ma-zing!
And my laptop seems to know that I'm replying to you, because it just switched to Chinese. Unfortunately, my Chinese vocab doesn't cover this situation. Thanks to the cushy ex-pat hospital (and the awesome English-Chinese drug dictionary at the pharmacy), all of my health-related language knowledge revolves around ??.
2012 Reading Challenge
Now Nesting from Chicago, IL My nail blog:
I'm so sorry, that sounds absolutely awful. Like Gilly said, you are amazing for keeping your spirits up and actually trying to laugh about what you're going through. I admire your strength.
Sending you all my T&Ps your way.
In addition to the keeping spirits up part, I will add: Thank God you don't live in the US and risk losing your job/insurance because of your medical conditions.
For reals.
Big hugs, I hope this crap is all cleared up soon.
Tofu - we love you. There is sometimes no apparent rhyme or reason for things like this. I'm sorry you are going through it. Life just isn't fair and that sucks. It probably doesn't help to know this but I've known several people who have had strokes or TIA's at ages not too far off from yours. It just happens, and you do your best to deal with it, prevent further strokes if possible and move on.
There are many things in life that are beyond our control. I'm so sorry your body is betraying you in such horrible ways.
I hope your medical team figures out the best way to help you soon. In the meantime feel free to vent here as much as you want. We don't mind.
*hugs x a million*
Tofu, so sorry to hear this. Sometimes the diagnosis and treatment doesn't make things easier at first, but here's to hoping that the doctors figure something out to give you a better quality of life than you have now.
I can't begin to imagine how hard this is for you, your dh and the girls. Hugs to you all.
I wish from the bottom of my heart that you didn?t have to go through all of this. There are plenty of douchebags in the world who have more than earned it to have to go through what you have been and are going through. But unfortunately the cosmos has not figured that out.
I am constantly amazed at your attitude and humour in all of this. And it?s perfectly normal to have a bad, shiiittty, horrible, no good day. It?s more than ok to be angry/mad/p oed at the world too. I?d be a little worried if you weren?t, at least a little.
I have a dinner bell somewhere that I?d be happy to send you
. I?m sure the nurses and your DH would really appreciate that
Definitely this. I'm so sorry you're going through all of this crap, and I hope your doctors can figure out what you need quickly. Do they think the stroke is a result of the medication you're on? Don't feel badly for not being able to laugh about it all the time. If you need to cry, cry. I also think it's amazing that you can even laugh about it some of the time!
Big hugs. You seriously are a super hero for dealing with all your crap - and still keeping your spirits up.
I hope you get some good news on Friday.
I am so sorry Tofu, you have an absolute right to have a bad day - everything you're going through sounds totally overwhelming and scary and I'm so, so sorry that you have to go through it. The fact that you've laughed your way through so much pain is amazing to me, you have such strength it's incredible.
Take care of yourself today and I hope you get some answers soon.
BFP Apr 2012, EDD Dec 19 2012 * twin h/b at 6wk, 9wk scan * Baby A lost at 12wks, Baby B was my rainbow born at 36wks
Tofu, it sucks that this is happening. You deserve to have a pity party, you've been so strong for so long. I cannot even begin to imagine the swirl of emotions you're experiencing, nevermind the fact that you probably just feel like ass. I know it sounds trite, but you really are inspirational. Lots of people would have been wallowing in pity for a long time, and you've handled this whole mess with courage and strength. I think of you often, and hope that the doctors are able to get your situation under control.
Lots and lots of hugs to you!
I am so so sorry that you have to go through all of this. I think that you have been so strong during all of this and I hope and sending you some major health vibes that your doctors can you make you feel better ASAP:
It is okay to throw yourself a pity party.I admire that you can find so much humor in life even when things arent going your way. I know I wouldnt be half as strong as you if I were in your shoes.
Hello Tofu,
I'm hardly on anymore but i've read a few of your posts and want to tell you how sorry I am that you are going through so much and how well you are getting through it. I'm hoping and sending vibes for recovery and I hope you can swiftly find the right people to make that recovery happen ASAP.
You guys are all very sweet, thank you for the pick me up. My attitude is hardly anything inspiring. If anything, when I'm upset, nervous or uncomfortable I crack jokes like an ass. That's probably all it is.
Here's a really ridiculous and lame confession though - actually, a few.
1. Everyone was saying that they'd only heard of Sarcoidosis before on House, so we googled it, downloaded the Sarcoidosis episode, watched it and I was so disappointed in it that I actually cried. Yes, I am that much of a feckwit. I was all pumped to watch it ready for some sort of validation of what I went through and what I've been dealing with and it was like, some deaf wrestler kid with barely any of the symptoms that happened to me. It's like they presented the lightest version of Sarcoidosis possible on the show and I was really disappointed. I was kind of hoping that at the end of the episode I'd be all like "holy schnykies I got off freaking easy! " and instead I was like "I'll have what he's having, please."
2. Of course when someone gets a disease, say, cancer - people talk about it and tell you about their friend, cousin, barber, fish mongerer, former stalker, etc. that also had cancer. This is normal, and is meant to be re-assuring I think. And if I had cancer, I think I'd find it reassuring to hear about everyone's miraculous recovery, etc. But I've now heard of 3 people that had sarcoidosis - my grandmother's mother (mind you, hypochondria runs RAMPANT in that family so I'm not quite convinced ), my MIL's cousin had it and my friend's ex-boyfriend has it.
BUT, none of them nearly went blind or walked around with an evil eye, fleeing from the sun and even indoor lighting like a crazed emo kid. None of them had their joints swell so badly that they couldn't pick up their kids or walk or even make their hand grip a piece of clothing to dress themselves. None of them had their organs shutting down, or facial palsy or speech problems. None of them had brain swelling or the excruciating pain in their face and neck. The lung problems. A stroke.
So yes, I'm a selfish, self centred ass (as I'm sure some of you have sussed out by now anyway) but when MIL tells me about her cousin Jim who had sarcoidosis and was really tired and sore all the time and he still gets really tired so he "knows how you feel" - in December when I was in the hospital there was a while there that we didn't think I was going to come out. We thought our kids would grow up without any memory of me and that it was pretty much game over. It was figured out in time and the worst of things stopped and are now reversing, but I'm not even out of the woods yet apparently (thanks, stroke.) and hearing about someone else that "had" it and for theirs to have been so minor in comparison doesn't make me feel better. It makes me feel like more of a freak and I find it very frustrating. It's like someone missing both arms being told "oh yeah, I totally know how you feel" by someone that cut off one of their fingers. But I get that people are just trying to be nice and I'm being kind of an irrational bitchface.
Chronically hilarious - you'll split your stitches!
I wrote a book! Bucket list CHECK!
http://notesfortheirtherapist.blogspot.co.uk
Tofu your disease sucks! You are allowed to have off days and you are allowed to get angry. Hell, I would be swearing like a sailor by now. You know they say only the good die young, and you aren't dying you just got a nasty disease so please go and do some more bad things so that you can get rid of it because right now they think you have been a little bit good... (Damn you they!)
(More hugs)
Regarding the House episode, I'm surprised there actually was an episode where it was sarcoidosis! The running theme seems to be that it's never sarcoidosis. They always diagnose sarcoidosis, and then try to treat it, and it nearly kills the patient, and then they realize it's something else. The reason people think "House" when they hear sarcoidosis is that they suggest it in practically every episode.
I don't know if you'd be interested or not, but a few weeks ago I read a short book for the Nest winter book challenge that was a "poetic memoir" for lack of a better term of a girl who suffered through an autoimmune disease in college. It wasn't sarcoidosis (she has CIDP), but she still has some really rough patches where she was definitely having those "Why me?!" kinds of thoughts. I have no idea if it would help or not, and you probably never get a quiet moment anyway, but I thought I'd share anyway. The Two Kinds of Decay by Sarah Manguso
Um, absolutely not.
I am so sorry. It's just not fair and it sucks.
I'm so sorry your going through all of this physically and emotionally. Well-wishes and lots of vibes for continued strength in dealing w/ everything.
I was talking to my sister yesterday (who's in phase 2 of a 3 phase treatment for cancer) and you almost echoed what she said about peoples well-meaning but not so helpful attempts to relate. I guess every time she talks to our Mom, mom chimes in w/ "hey xyz had cancer and he/she's just fine." My sister's comment, 'I know Mom's trying to help, but come on Mom... guess what, you're not going to run into the people who aren't 'just fine' at the mall'.
I say this not to be morbid (to you or my sister), but just as a FWIW I think such feelings of stress/fear/annoyance are totally normal and, frankly, a healthy way to cope. Not selfish at all.
Anyway, best wishes for a full, speedy return to health!
This x?s a 1000000000000000.
It really sucks and you shouldnt make yourself feel bad because you have moments when you feel like this.
Ditto this.