i wish crying made me feel better

[rootofnewt]

I really need to address this with my doctor, but I don't know where to begin. I rarely get anxious, but after a few years of having this damned conglomeration of disorders, I do. I never know how a new doctor will react.


I want to work. Right now, I am not able to work. The combination of chronic pain, brain fog, and fatigue make it tough enough. Adding on the chemical sensitivities, allergies, and asthma make it nigh impossible. The thing is, it's damn hard to get the government to agree with this, which is one reason I haven't filed for disability. Another reason? I don't want to admit that I might never get well.

Looking at the myriad of problems, pain and fatigue are at the forefront. Okay, I could deal with the fatigue by working part-time, afternoons only, and I could *hope* that I don't have any major crashes. The thing is, these diseases are unpredictable. Even so, I could *try*. As for the pain... It's bad enough now that I can't concentrate. I can't sleep well. The meds which might possibly help this would likely make me loopier and render me unable to drive. I can't drive some days as it is.

Foot pain. We'll see how that progresses after I get the orthoses next month. I can't do any jobs which require standing or walking for any period of time. I force myself to walk now, but I always end up crying at night after boy goes to sleep because of the pain. I'm not crying because I'm depressed at the futility of the situation--I'm crying because it hurts *that badly*.

Carpal Tunnel issues--I have custom splints, but even they don't completely alleviate the pain and weakness in my hands. Since most sedentary jobs require a lot of typing or data entry, I'm not sure what i could do about it.

The chemical sensitivities and allergies are another issue. I can't work with people who wear perfume or lots of scents. I can't be around lysol or certain other cleaning chemicals. I'm allergic to some dyes and being around printers and copy machines can make me ill. I'm severely allergic to mold and dust, which are frequently issues in this area. My latex allergy is intense enough that I can't use rubber bands, nor can I touch triplicate forms (which often use rubber in their inks). Fresh carpets make me ill and I can't be around fresh paint or air fresheners. When I say ill in the MCS way, we're talking nausea, migraine, hives, incoherence, slurred speech, confusion, disorientation, intense drowsiness, blood pressure drops, etc.

Fluorescent lights trigger headaches for me.

What the hell could I do? I can't do anything that requires thinking on a regular basis because of the brain fog. I can't do anything remotely physical. I can't sit for extended periods of time or the fibro pain intensifies and I get cramps. I need somethiing where I can stretch and take breaks, yet not work so long that I crash.

This is so frustrating. I used to be so energetic. I used to be so vibrant. Once, I could actually think and form coherent statements about things other than food and trees. My degree in Russian is useless to me since I can't *think* at all and confuse words left and right in both English and Russian.

And I still have to face the fact that it's quite possible a lot of my problems were brought on by that damn cyst. In another year, I might feel significantly better. On the other hand, I stopped working in 2000. After five years, I won't be able to apply for disability, I'm told. So I need to decide in the next year and a half.

Meanwhile, the pain gets worse... the neuropathy intensifies... right now the fatigue is less severe, but i don't know how long it will last. And I start to wonder if I'll be able to enjoy any sense of good health before I'm too old to notice.

Comments

[lcohen]

oh sweetie.

*wordless hugs*

You can always go off disability if things improve...

[moominmuppet.livejournal.com]

It might help not to think of it as an admission of a permanent situation, but of one that you simply can't forecast. Given that, I think applying for disability makes a good deal of sense, especially since there's usually some wrangling involved in finally getting it, and starting the process sooner means ending it sooner.

This is so frustrating. I used to be so energetic. I used to be so vibrant. Once, I could actually think and form coherent statements about things other than food and trees. My degree in Russian is useless to me since I can't *think* at all and confuse words left and right in both English and Russian.

And I start to wonder if I'll be able to enjoy any sense of good health before I'm too old to notice.

And this is the part I have no good response for, except *hugs*. I certainly can't promise it'll all improve, but I'm hoping it does. Even with the brain fog, you're still a fascinating, funny, twisted, vibrant person. I envy red_frog the opportunity to just sit around and talk with you.

Re: You can always go off disability if things improve...

[red-frog.livejournal.com]

You should. :)

[laverick.livejournal.com]

I don't have any answers. I'm asking the same questions in my own life. I would recommend disability if you can. I had the thoughts I'd improve in a couple months a few years back, but you can just as easily get off disability if you *do* find yourself able to work again. ((hugs))

[red-frog.livejournal.com]

I hope you don't mind concrete suggestions, but I know something you could do that would fit your physical requirements.

Be a writer.

You can obviously do it. Doesn't matter if you can't do it all the time--neither can I. Every writer I know (quite a few, for some odd reason ;)) has periods of sitting and staring or doing research until they're ready to write again.

You can work at home, in an environment you control.

If you're tired, you get up and rest until you can do it again. I just took a nap wherein I slept like the dead, because I needed to.

Being a writer is easier on the hands than data entry is--BTDT when I was in college. I just have to be careful about how I work and what I use my hand muscles on.

I have no idea if you could make any money at it, but you could try and it is a job that fits your physical requirements.

Give it some thought.

[klwalton.livejournal.com]

I was going to suggest the same thing.

[chorus-of-chaos.livejournal.com]

there's also voice recognition software to spare you the typing, you just go back and edit what the stupid thing doesn't understand. I've been wanting to get dragon dictates for years.

[red-frog.livejournal.com]

A technology writer friend of mine with wrist problems has been trying to use VR software--including Dragon--since 1994 (and keeps trying) but with very limited success. (I believe that "it's garbage" were the last words from him I heard on the subject.) YMMV and all that, though.

[mactavish.livejournal.com]

I've spent *hours* trying to train it. It's okay for straight, slow writing, crap (so far) for rewriting, editing, anything that involves efficient moving around in the document.

[mactavish.livejournal.com]

I'd add that you (krasota) already have very good writing skills, it's not much of a stretch.

[red-frog.livejournal.com]

Yup--that's what I meant by "you can obviously do it". :)

[risabe.livejournal.com]

**hugs**

Risa

[lupa.livejournal.com]

to add to the comments above:

re: disability - go for it. it is not an admission of anything other than the fact that you can't see your way out of this illness right now. admitting you need help is not admitting you are helpless.

re: writing - if you can write with a pen, Wacom tablets are good interfaces (and you can deduct them from taxes).

[mactavish.livejournal.com]

it is not an admission of anything other than the fact that you can't see your way out of this illness right now. admitting you need help is not admitting you are helpless

Gotta agree with this and folks above. Apply now, before it's too late. You can always go off it -- and even back on, later. It's frustrating as all hell. I'm sure you know that almost no one is accepted on her first try, it takes at least one appeal. But though it takes some attention and diligence, it's not impossible, just on a deadline. Now's the time. And though it's not lots more money, as "second income," it adds a considerable margin of safety against all hell breaking loose, such as what happened with me and deyo.

[krasota.livejournal.com]

The whole applying in the first place will take energy I can barely spare... and I'd have to establish relationships with more doctors... it would take awhile. And I've had a damn hard time getting my doctor's offices to send records down here. The office people up at Georgetown suck syphilitic donkey balls and they can prove it.

And the whole having to appeal will take more energy than I actually have, I think. *sigh*

[ismene.livejournal.com]

Many people have to appeal, but you might not have to. Both of my parents were granted disability without an appeal.

Another thing to consider is that if you were granted disability, you might be eligible for Medicaid, which may well provide you better coverage than your current insurer.

*hugs*

[dahliablue.livejournal.com]

I wish I had some advice, but as clueless as I am about my life, I am probably the last person who should hand out advice.
I do know that I understand - so much that this was hard to read. I have the same sensitivities and problems and I haven't been able to think of one environment I could actually work in, other than my home. I wish those work at home things weren't scams or phony crap. I could do it, if it was from home.

I know you could get off the disability if you found yourself able to work. But, I do know how difficult it is to make the decision to apply. For some reason, it was much easier for me to apply when I was a teen (even though I was denied twice). Now that I'm older, the thought of applying chokes me up. I don't want to think about it, I don't want it to have to be an option still, after all this time.

I'm sorry for rambling. That's probably the last thing you need. Guess your words hit a little close to home. ;)

*hugs, support and understanding*
.

[sabethea.livejournal.com]

*hugs*

i want to rage at the world that made you this ill. i DO rage. and i wish it helped.

*very much support and love*

[designingwoman.livejournal.com]

Being in that boat of multiple problems, I sympathize as I know how the pain and sickness goes. I am going to say something...and it is hard to digest...it is very hard for those that are chronically ill...to admit that they have limitations and get help about it. It is like part of us has died and we go through the process called grieving...and the first part is denial...denying that it will be like this from now on. The next part is anger at being this way, then so on til comes acceptance. We tend to want to shy away from anything that puts it into black and white that we are limited and sick...ie..filing for disability. It normally takes three times for most people...me..I got turned down twice because my problems were not on the list of automatice disabling diseases...so they had to show that what my diseases did to me made me disabled even if the diseases were to disappear. I got a diability lawyer...no money upfront ..comes out of back pay and he did all the work I was too tired to do. Making sure of doctors papers, etc. And I was approved a month later. And because of getting on disability, I then had medical coverage through medicaire..was on medicaid to begin with. My roommate was the same way..we became roommates because of being disabled..to share costs. But, because of disability and medicaid, we were able to get things we normally would not be able to get..like the bed, the bars for the shower, shower chair, etc that made life a little easier. so..all this said...get the disability papers hon and fill them out...and if your doctors don't cooperate...let the disability lawyer do it it...if the doc...mine did not fill out anything on my re-eval and they sent me to their doc...and he did it. Anyway...do what makes it easier for you hon and what gets you the most help.
hugs
Deb

[stmaybe.livejournal.com]

i just wanted to offer a *hug*

i have a lot of similar thoughts haunting my mind lately. i'd originally claimed to be "taking the summer off" but i'm having a lot of trouble trying to figure out what type of work i could go back to. everything i think of is followed by... no, that wouldn't work because of my fill-in-the-blank-illness.

i've been avoiding the topic of disability. i'm not mentally ready for that process. but sometimes, late at night, i have to admit its been three years since i've been able to work more than 20 hrs a week, and i haven't been able to even do a small part of that for the last 18 months. i've been ignoring the diability conversation because k's been able to support us - but what if something happens? am i being terribly irresponsible by not applying for disability because i don't want to admit that this isn't going away and it isn't getting better?