My Photo

Gimpy Gifts














More Gimpy Gifts















the buzz....


  • "Gimpy Mumpy: This blog is the "platform for daily rants, dark humor, news updates and discussion" from Mumpy. It also features a number of Mumpy's characterful cartoons." -Crippled Monkey, BBC Ouch. February 9, 2005.

  • "Some of the best disability commentary around is now coming from blogs.....Ragged Edge readers suggest these blogs: Gimpy Mumpy, Diary of a Goldfish, Ghetto River Nymph" -Ragged Edge Online Magazine, April 27, 2005.

« | Main | Celebrations »

June 19, 2005

Comments

Sandy

I'd like to add to the good thoughts sent by others. Yep, I too have cried in pain and frustration being told that it ain't going to get any better.

I know this may sound trite, but I would like to pick up on the there are always new things comment. Many years ago I had a disagreement with a horse as to who should be on top - needless to say who won. If it was between my knee and my waist on my left side it was either busted or crushed. Four surgeries and another waiting in the wings. Basically, I'm held together with sexy glue and spit. Point being, each time they did a surgery, they had no way to fix it when it broke; so each time I bet everything that they would and, so far ... sh-h-h. I look like the spirit of '76 when I move.

Someone else spoke about our normal being different. Yep, that it be. I once heard that normal is a setting on the dryer.

Pain management - Find someone who specializes in it. If Dr. No-Personality (we've all had those), ain't cuttin' it, check out someone who will. Tried to find someone in my area once and although he posted himself as Pain Management, turned out he had been something like a foot doctor or asthma MD or something. Get one who is for real! Have spoken to a lot of people and they can help.

So, you're from Maine. Me too!

Please take care.

Gimpy Mumpy

Thank you all for the advice and support. Feeling much more cheerfull today :)

Agent Fang

Dear Mumpy, I hope you're feeling a bit better now. I'm sorry to hear you had some bad news, but glad you are getting busy. Don't skimp, dear gimp, on being thoroughly spoiled and loved by everyone around you for a while yet, promise me?! We have to go through this stuff, and you will, and feel better for it in the long run. Pain is a beatch, but so are doctors sometimes - maybe Mr No-Personality is not the best expert to be in your corner regarding pain management - as Eliza says. You have to ask whether a surgeon is also a pain management specialist - if not, blow him a raspberry and get another opinion. Whatever steps you end up taking to manage the pain, there is a way foward even if you have to make your 'normal' be different from other people's. Don't let it permanently dominate your life - or your head. A year isn't a very long time perhaps for things to settle down to how they're going to be... I know having some rather creative bone surgery on my leg - a mere leg (!) - took around 18 months/two years, and then some, getting it stronger. So, it may be a long road - which you knew already - but the trick is not to fall into the habit of being certain of how things are going to be or what choices you have in front of you. Just make up your own rules re. energy and lifestyle, it's yours to own.

And remember, you are one cool gimp!

lots of fluffy stuff,,

AF

:0X

stella

Hope you're on your way back to being your usual amusing self! I know the feeling though. My wheelchair decided to have a little hissy fit on Saturday night where the entire middle fell out of the rear driving wheel. Given that I'm totally stuffed without it and I live by myself, I had to call a friend to come round and stay until a repair guy could get to me in the morning. Had to have a bit of a cry myself! Cheer up!

Eliza

Oh, Gimps, I'm sorry. That sucks. We live in a society that expects that everything is either fixable or fatal, but we've learned all too well that this often isn't the case. Although I am still hoping to find something that will at least reduce my pain level, I've known that I won't ever be "better," that my previous surgery was just to stabilize things and any improvement would be a bonus (alas, who knew it would get worse?!). (And, because we are crip twins, I was also told on Thursday by the guy at Hopkins that he thought there was nothing left to do and I wouldn't get better than this, although he then allowed that he would trust my regular nsgs who want to operate on me again).

I'm normally all about being realistic and don't buy that I have to be unrealistically
optimistic in order to do/be "well," so I hope this doesn't sound too Mary Sunshine-y. Because, yes, I think that building one's emotional well-being on false hope is unhealthy and it's better to deal with reality, even when it's a crappy one. But, that said, the one thing I do think is important to remember--not to pin one's hopes on but to keep in the back of one's mind--is that surgical techniques and pain management options ARE advancing, and so we can't know for sure: just because there's nothing else out there NOW doesn't mean there won't be something in the future that will help.

That said, it's certainly okay--and probably important--for you to be down and to mourn this for a bit. It does suck. And only doctors who are taking their new admonishment to Screen For Depression way too seriously without actually understanding it will see feeling sad for a while over this as a contradiction to your "mental fitness." Whatever.

Btw, have you fully investigated the SCS? If you have have, ignore this, but, if not: unless that doc means it has a "very minimal success rate" among people with YOUR particular problem, that really is not at all what I found when researching it this winter, when it was recommended to me. I decided not to go through with it at *this* point for a variety of reasons, but mainly 1) if there's still a way to FIX some of the issues rather than just cover them up, I think that's worth the first try, 2) I'm not yet convinced that this is an appropriate treatment for someone with a syrinx (have yet to hear of anyone else with my conditions using a SCS or intrathecal pump, and my neuros kept giving mixed messages as to whether or not they thought I should do it), and, 3) given that I'm supposed to be monitored by MRI every six months, I'm not comfortable yet giving up the ability to have MRIs done; perhaps I will in the future once I have more stable info on my syrinx (the pain doc who recommended the SCS said, "Would you rather be able to see pictures of your spine to say, "Yup, still hurtin'," or not to be able to see it while it's feeling better?" which makes sense, but, for now, I want to be able to keep following it, since it seems ridiculous that the syrinx really hasn't gotten any smaller since surgery, as it's supposed to. And, I'm still hoping they'll have an MRI-able unit on the market soonish). I digress, but, my point is: if you're at all interested in considering the SCS, maybe it would be good to see someone who implants these things a lot.

Addendum:
I guess some of the above is a bit outdated now (I had written this earlier but didn't get to finish before I had to leave my mom's to head home). I'm glad to hear you're feeling a bit better and are focusing your sadness/anger energy into something that could be really helpful and important to you and others. But, it's cool to be sad and pissed, too.

[Psst. The Maine thing? Not a big secret. Every time you visit a website, your DNS gives you away. Although, for some reason, I thought you'd written something at some point that made me think you were in NY, so I kept hoping the tracker info was wrong and you were actually local to me. Oh well. (When I'm not proxying through my NYU account, my NYC-based ISP pretends I'm in Virginia for some reason. So, I thought maybe your ISP was geographically impaired as well)].

Gimpy Mumpy

Thanks, I'm feeling a bit better this evening. Thought I had already come to terms with the never ending pain and the limitations I have, but I guess that I still had some issues to deal with. Lots better now :)
I've decided to start up a little support group for other people in my area with chronic pain. I know up until now I haven't revealed my exact whereabouts (was trying to dodge any possible whackos, the bad kind not the good kind) but I live in Maine, USA.
There are not many groups near me and none that focus on younger adults with chronic pain, illness or disability. I think there are alot of issues such as sexuality, drug use and abuse, body image and relationships that would be valid topics in a group that was geared toward younger people. I have already found a meeting hall that is willing to let me have some meetings so now I just have to channel my negative energy of the past few days into something positive.

Timmargh

Ah, my previous comment seems to be missing the {patronising mode} and {/patronising mode} around the first sentence ...

Timmargh


Chin up, Mumpy!


There's no need to be embarrassed at crying now and again - I know you probably don't want to do it in public, I mean, who does?

Still, I think we can all say we've been in a similar mood - maybe not for similar reasons but a lot of people can relate.

That said, I'm sorry to hear about your spine.

Katie Fraser

Hi Mumpy, Sorry to hear your news about what the doctor said.
I cry too at silly things so know how you feel.
Especially when I have done something that is tricky to do and I end up either swearing about it or start getting upset and saying to myself that I don't like my house.Sad aren't I?
These things are sent to try us in life, aren't they?

The comments to this entry are closed.

Crip World Domination

Blog powered by Typepad