Physical Disability & Self-Esteem: Life As It Is Now, Coming To Terms, Rising Above

[RblHarley4]

Well, my shipment of muscle relaxer never showed up.

So, either they never sent it...or one of my lightfingered neighbors has absconded with it. I finally fell asleep at 8AM and then woke up at 11:30AM.

I dug around and found 4 more. If I only take one before I go to bed then I'll be able to sleep without stuff locking up. I'll still hurt during the day but at least I'll be able to sleep. I heart sleep.

I had called the folks at the particular program who supplies this med and they assured me like ten days ago that I'd have some in a week. I've called twice since then and gotten voicemail. I frickin' hate voicemail now. My voice pitch is rising each time I call as is the snippy level.

I heard from hellboi. His computer is down so he's using some kind of palm thing or something.

I hope you are all having a good Saturday thus far.

SFK

ughhhhhhhhh ... doesn't that jus burn ya!!!!! like getting our meds is NOT important !!!! ... hope you get them soon ....... btw, thanx for the 'headz up' on the color .. sorry bout that .. wasn't thinking ( happenz a lot! ) i'll use a grayish color for everyone ... take care and thanx again!!

[RblHarley4]

I know I have posted this before, but I am posting it again for our newer folks.

Neurology is a great FREE magazine with all kinds of info: addresses and phone numbers for organizations, info about research, etc. The issue this month ROCKS! Just some of the features this month that could help us:

Virtual Support: Joining Online Support Communities (Hmmm..there's an idea!)

Hope For Brain Injury

Pet Therapy

Double Storm: Epilepsy and Depression

...and many more on MS and other conditions. It is free if you have a neurological condition, also free for caregivers, friends, family and partners. Check it out:

Neurology Now New Subscriber Form
http://www.aan.com/apps/neurologynow/index.cfm?event=public.newSubscriber

Many conditions are covered: sleep disorders like sleep apnea, brain injury, epilepsy, MS, Parkinson's, chronic neurological pain, etc. You can take a look at the current issue on the site to get an idea of the info available for FREE.

Another great resource is the Multiple Sclerosis Association of America (MSAA). Check it out here:

MSAA - Join
http://www.msaa.com/join.html

I was actually told about them by one of our thread members and I was able to get equipment assistance from them as well.

Arm yourself with all the knowledge you can! If aren't sure where to look for your condition PM me and I will try to help.

SFK

hey shy .. thanx for the info above ... i went to both sites and signed up and can't wait to see what they have to offer ................

[Shyfemmekat]

I've been getting caught up on the forums tonight. Would like to say, welcome to the new faces. Look forward to reading more about you all. Hope everyone's doing well and pain-free hugs all around.

Been having a very rough time lately. Wearing my braces has been almost unbearable, I'm just so itchy and prickly and squirmy. There are times when I get into these cycles where I am in so much pain I can't sleep until the scale slips in favor of exhaustion and I pass out, only to wake up in the same pain. I know I'm no joy to be around. Innocuous statements made by those around me are absolutely setting me off. I snap something hurtful, and then I'm left feeling...I don't know. I'm not angry, and I feel awful as soon as I say it. But I can't stop it. I don't like this new bitter me, not one bit.

I've gotten a referral from my rheumatologist to a pain clinic. Praying this helps.

It is good to hear from you. I was wondering how you've been.

I can so relate to the sleep thing right now. I finally fell out and woke up with a colossal headache from falling asleep in the room without my CPAP. And physically I still hurt as much as I did before I went to bed. Pain will make you mean, that's what I think. I know I have been snappy and short-tempered.

So if I've been bitchy lately, sorry.

"Makes me wanna holler..."

All we can do is the best we can do at any given moment.

I'll be praying for you to get some relief soon.

SFK

[RblHarley4]

Snippy...

Hey Harlie,

Yeah, this is a special group of people here. Much knowledge freely given, troubles and victories shared, and it's free!

See, I have free charity care right now, the only things I pay for are my therapist, groups (I'm not in one right now) and my psychiatrist, and I pay $10 a pop for those. The bulk of my meds I get through the Partnership for Prescription Assistance, which saves me something like $26,000 a year. I have been hearing a lot of horror stories about Medicaid from someone local so naturally I get nervous.

I have not had a lot of support on the fibromyalgia for quite some time. Some I know feel like it is a "fat" issue, that is, "Fibro is just you being fat, if you lose weight you won't have it anymore." I don't really do anything for fibro except Tramadol when I hurt very much. I have to baby my liver a bit due to the interferon shots.

Now as you can see, Gabe knows a lot about fibro. My knowledge is limited, as the fibro has taken a back seat to the MS for me.

Can I ask one teensy thing, please? Could you use a font that is a tad bigger and not use reds? We have folks on the thread who have vision issues with reds, myself included. So If you could use black or grays a tad bigger that would be perfect. I don't want me or anyone else to miss out on what you have to share with us!

Hope you are having a great day today.

SFK

first of all .. i apologize for the color and size and promise to change them for everyones sake ...
second .. my g/f went to a new GP yesterday (bipolar) to get her klonopin refilled until she can get into the program she starts next week and get a new psychiatrist, she LOVED the doctors reaction to her OWN bipolar issues and the reaction to her old doctor (GP... (A$$h0Le) NOT refilling them unTIL she could see her new psychiatrist on the 30th .. however, as SOON as she mentioned she'd love to have her as her new GP and asked if she worked with patients with Fibro (she thinks she may have it .. as her mom does and she has a lot of the pain areas) .. the doctor came RIGHT out and said ... '' I dont believe in Fibro !!! '' with no if's, and's or but's!! .... soooooooooooooo typical!! i told her to stay with her tho becuz its hard to find a GP that beleives giving klonopin is as necessary as the meds needed for MS and other neuro diseases ... she doesnt feel its "all in kimbre's (my g/f) head'' ... she can always be referred to a rheumotologist or a neurologist ... whichever!!
........... i mention this becuz of what it seems you go thru with the ''doubt and lack of support'' for your fibro !!! ......... it seems to be everyyyyyyyyywhere!!

my best to all here ... hugz peace & strength to each of you! ~harlie~

[RblHarley4]

I've been getting caught up on the forums tonight. Would like to say, welcome to the new faces. Look forward to reading more about you all. Hope everyone's doing well and pain-free hugs all around.

Been having a very rough time lately. Wearing my braces has been almost unbearable, I'm just so itchy and prickly and squirmy. There are times when I get into these cycles where I am in so much pain I can't sleep until the scale slips in favor of exhaustion and I pass out, only to wake up in the same pain. I know I'm no joy to be around. Innocuous statements made by those around me are absolutely setting me off. I snap something hurtful, and then I'm left feeling...I don't know. I'm not angry, and I feel awful as soon as I say it. But I can't stop it. I don't like this new bitter me, not one bit.

I've gotten a referral from my rheumatologist to a pain clinic. Praying this helps.

hey gossamer, .. i'm so sorry yer hav'n such a hard time right now!! i've heard those pain clinics are great .. my daughter has spinabifida-occulta and has had to have 3 surgeries so far (shes 13) and the last time they had to 'scrape all the scar tissue from around her nerves while in there .. NOTHING seemed to help her pain and discomfort .. so they brought in a person from the childrens hospital's pain clinic to work with her and it really did help.. !!!
i understand the ''no joy to be around", snapping and all the other feelingz ... i tell eVeRyOnE .. 'when i'm hurting .. i'm best left alone .. my anger ( i believe ) comes from being TIRED of hurting ... my old neuro once told me ... ''when you are in sooooo much pain .. it takes EVERYTHING you have to just ''get by'' ... so its harder for you to ''remember things'' and harder for you to ''deal with life'' ... it takes all your energy to focus on your pain and how to try to keep it 'under control'.." ...... i think he was right!

my best to everyone here!! hope all have as good of day as possible!!

[MiamiButch]

Well Harley,
I buried Pillow today. It seems my anger this time was a bit much for it. It burst it seems and bled feathers all over the floor, and finally shed it's last downy drop. FORTUNATELY, I got myself one of those COMFORT FOAM pillows now, and even though it won't give me the satisfaction of bleeding feathers, it WILL stand up to WAAYYYY more abuse! I'm even painting a bullseye on it! Hehehe.... Now on the serious side, the copious amounts of Neosporin I've slathered onto my burns seem to be working a bit, BUT I'm STILL trying to get a ride down to the other hospital. It BURNS the CRAP out of me that when I had my car, any of my "so called friends" who needed to get somewhere just had to call me, and I'd do them the favor. Now, it seems everyone is too bloody BUSY. I'm probably going to get stuck waiting for the 1st of May to roll around and spend 30bucks on a CAB to go to the hospital again.... GGRRRRRrrrrrrrrrrrrr...... I HATE not having a CAR!!!!!!!!!!!

i can totally feel yer pain with this .. we've been to the ER so much lately i feel like we MUST own part of it!! ... and i totallyyyyyyy get the ''waiting around with no emergencies and the nurses BS'ing while we SIT there '''''''' waiting!!!! ... 9hrs is the longest and 4hrs the least ... i'm sorry you had to go thru all that basically .. for NOTHING!! i hope you get help quickly from your doctor .. you obviously need immediate help!! ... peace & strength be with you .............. btw .. how's the pillow doing????

[curley]

Hi everyone
I haven,t posted here lately, just silly stuff happening, I just finished reading "you don't look sick!..living well with invisible chronic illness" and thought I'd share a line from the book, "when people say but you don't look sick. I say but you don't look stupid" to funny, I often say that (to myself when meeting people) and always get a priviate chuckle out of it

[Shyfemmekat]

first of all .. i apologize for the color and size and promise to change them for everyones sake ...
second .. my g/f went to a new GP yesterday (bipolar) to get her klonopin refilled until she can get into the program she starts next week and get a new psychiatrist, she LOVED the doctors reaction to her OWN bipolar issues and the reaction to her old doctor (GP... (A$$h0Le) NOT refilling them unTIL she could see her new psychiatrist on the 30th .. however, as SOON as she mentioned she'd love to have her as her new GP and asked if she worked with patients with Fibro (she thinks she may have it .. as her mom does and she has a lot of the pain areas) .. the doctor came RIGHT out and said ... '' I dont believe in Fibro !!! '' with no if's, and's or but's!! .... soooooooooooooo typical!! i told her to stay with her tho becuz its hard to find a GP that beleives giving klonopin is as necessary as the meds needed for MS and other neuro diseases ... she doesnt feel its "all in kimbre's (my g/f) head'' ... she can always be referred to a rheumotologist or a neurologist ... whichever!!
........... i mention this becuz of what it seems you go thru with the ''doubt and lack of support'' for your fibro !!! ......... it seems to be everyyyyyyyyywhere!!

my best to all here ... hugz peace & strength to each of you! ~harlie~

Sorry about what happened to your sweetie. The doctor who finally diagnosed me was a physical medicine specialist. He knew his stuff.

I know my neuro had a different attitude this last time when I went to see about my neuropsych test reults. She acted nervous and uncomfortable wth me, and barely mentioned the pysch portion of the test. I was like, c'mon, I have been seeing you for almost 2 years, lady, why are you getting funny with me now, because part of my test results say I have anxiety, depression and PTSD? Are you afraid to piss me off or something, scared I might flip? You're the one who was suggesting medication way back when. Geez. It made me feel bad. I have been there before with doctors. I don't want to switch doctors though in the middle of the whole SSDI thing.

I feel like once doctors see you have anything that can be termed as emotional or psychiatric they start lending less weight to what you say. That is BS.

SFK

[Shyfemmekat]

Hi everyone
I haven,t posted here lately, just silly stuff happening, I just finished reading "you don't look sick!..living well with invisible chronic illness" and thought I'd share a line from the book, "when people say but you don't look sick. I say but you don't look stupid" to funny, I often say that (to myself when meeting people) and always get a priviate chuckle out of it

I like that, yes I do. I will remember that. Good to hear from you!

SFK

[espresso]

Hello! First of all, my heart goes out to all of you who are having a difficult time. Feel free to pm me anytime for support, or add me to aol inst. messenger (info in profile). I've been chatting with Shyfemmekat the last 2 nights online. She's a super neat lady, and such a wealth of knowledge on MS! Thank you, Shyfemmekat for your new friendship! I welcome new friends all the time.

There is one thing I am trying to learn how to do with posting to this thread. It amazes me when people are able to personally respond to several different people within one post. I hope I'm making sense. i guess I could write down what I want to say on paper, and then post it here - lol! I'm not real computer savy, unless it's aol! And my partner has tried tirelessly to teach me forever - lol! I'll keep trying. But basically what I want to convey, is that I want to offer support, understanding, and compassion to others.

I also have a question. Is there such a thing as a retractable cane (like a retractable lip brush - lol)? I'd love to have one that can fit in my purse. I know of folding ones, but they take up too much space in my purse.

I hope you all have a pleasant day.

[curley]

SShe acted nervous and uncomfortable wth me, and barely mentioned the pysch portion of the test. I was like, c'mon, I have been seeing you for almost 2 years, lady, why are you getting funny with me now, because part of my test results say I have anxiety, depression and PTSD? Are you afraid to piss me off or something, scared I might flip? You're the one who was suggesting medication way back when. Geez. It made me feel bad. I have been there before with doctors. I don't want to switch doctors though in the middle of the whole SSDI thing.

I feel like once doctors see you have anything that can be termed as emotional or psychiatric they start lending less weight to what you say. That is BS.

SFK

I know what you mean ,having been a psych nurse for 20 years i am blessed in some ways When going through the myriad of specilasits untill I found a knowledgable one, I would often get responses like it;s" stress or menapuse" or some such nonsense I was able to come back and inform them that in my experience I wasnt aware that either of these condtions caused brain leasions or the type of neuroligical problems I was experiencing. I am curretly on low dose anti depressents (along with my other meds) at my request, in dicussison with my doctor ,as a preventive meseaure.
My team of doctors that I currently have are very good and have an awarness that a person may experience psych/emomtinal problems due to a number of reasons ie changes in brain chenistry due to the illness and the situational aspects of the illness and they dont negiate the physical/ neuro stuff
I agree to seperate the two is total BS

[espresso]

espresso .. best of luck with your evaluation .. my findings with them is .. the ones that do the evaluating for disability .. dont kno anything about fibro or ms ..lol its like they do a psych eval more than neuro ..lol anyhow .. i wish you ALL the best!!!

Thank you for the kind words! I had my evaluation from the neurologist yesterday. So we'll see how it goes. If I get turned down, I'm getting a lawyer to appeal it. I wish you all the best as well. Thanks again!

[CalCowboy]

I know, it was just a bummer that I missed you.

SFK

ok, catch ya on the thread...you hangin' in there ?

refresh my memory, is 10:45ish too late to call ?

thinkin' bout you...talk soon

[espresso]

not very many people understand how affected I am by this. They do not see me as having a disability. When I drop things I am clumsy. When I fall or am slow I am shirking my duties.I am worthless and have been told so by some of the people I have to work with but never in the hearing of our boss. In front of her thay can do no wrong whatsoever.

I am not worthless and neither is anyone else who has a disability. We may not wear braces or aids but we are living on a daily basis with disabilities which are beyond the comprehension of most normal people.

Hello! I found this link: http://www.myida.org/. It's support for people with "invisible disabilities". I, for one, totally understand this, along with many others. Are you going to look for another job? I wish you lots of luck!

[Shyfemmekat]

ok, catch ya on the thread...you hangin' in there ?

refresh my memory, is 10:45ish too late to call ?

thinkin' bout you...talk soon

YAY!

Sun - Thurs I am usually up till 11PM anyway.

Yeah, I am alive and kicking. Got a cheery phone call from a close friend which perked me up considerably.

Thinking about you, too!

SFK

[CalCowboy]

Hello! I found this link: http://www.myida.org/. It's support for people with "invisible disabilities". I, for one, totally understand this, along with many others. Are you going to look for another job? I wish you lots of luck!

I can totally relate...I finally got a job after almost a year of searching...it was posted as "administrative & clerical support"...turns out it is quite a physical position with extensive walking, bending, stretching, and lifting. The previous people in that position climbed on desks and chairs to reach equipment mounted on the ceiling ! I did not disclose my disability in the interview because it would not have had an effect sitting at a desk. Well, the choice was quit or get it done. I managed to find a cart to carry supplies around with, and it doubles as a walker for me. Found some old remote controls for the ceiling mounted stuff, and I get 2 hours to finish what the past employees did in 45 minutes, but that was the only accommodations they felt I needed. My limp is not so invisible, but otherwise everyone sees me as strong and able-bodied. As a butch, I'm not so lady-like, so they figure it's natural for me to climb on furniture or run cables in a classroom (which it used to be, so I do it, but now it's slow and sometimes painful).

I'm grateful I CAN do it, and in the end it's like a workout at the gym everyday, so it just might make me stronger. It's been two weeks and I'm still kickin' so who knows...maybe it wasn't what I wanted, but what I needed to get stronger and get back on two wheels!

Thanks for the website...it's hard for me to do what I do everyday and no-one knows it or acknowledges it..at least you guys listen and understand

[Shyfemmekat]

Hello! First of all, my heart goes out to all of you who are having a difficult time. Feel free to pm me anytime for support, or add me to aol inst. messenger (info in profile). I've been chatting with Shyfemmekat the last 2 nights online. She's a super neat lady, and such a wealth of knowledge on MS! Thank you, Shyfemmekat for your new friendship! I welcome new friends all the time.

There is one thing I am trying to learn how to do with posting to this thread. It amazes me when people are able to personally respond to several different people within one post. I hope I'm making sense. i guess I could write down what I want to say on paper, and then post it here - lol! I'm not real computer savy, unless it's aol! And my partner has tried tirelessly to teach me forever - lol! I'll keep trying. But basically what I want to convey, is that I want to offer support, understanding, and compassion to others.

I also have a question. Is there such a thing as a retractable cane (like a retractable lip brush - lol)? I'd love to have one that can fit in my purse. I know of folding ones, but they take up too much space in my purse.

I hope you all have a pleasant day.

It has been very nice chatting.

Check out this link for canes...

Fashionable Canes
http://www.fashionablecanes.com/Elit...ing_Canes.html

I need a new lip brush badly, BTW...can you PM me or email ideas?

SFK

[akadyke]

hi everyone...

i am here... and kicking... just tired... and trying to rest.

okay, now i go make mimis... m'kay?

a. xox

[ArchAngel Gabriel]

Hello! I found this link: http://www.myida.org/. It's support for people with "invisible disabilities". I, for one, totally understand this, along with many others. Are you going to look for another job? I wish you lots of luck!

thanks for the link. Yes I am going to look for another job. I really just need to get out of there because it is turning out to be quite toxic.

[lionandlamb]

Hey everyone!!

I feel like I have missed so much!! Shy-I understand about the prescription issues!! Being on chronic pain meds, I have to count them out for the month, because if they are gone, they are GONE!! Do you only get them by mail order? Some pharmacies will give a 2-3 day supply if its emergent. Maybe the scrip could be transferred to a local walmart or something??

I wish I had the energy to address everyone individually, but I am wiped out!! I do keep this list in my prayers, as I know we each face our own giants every day. Here's the latest from this corner of the world....

I seem to be in a 'cluster headache' cycle. Gotta love those migraines!! I was out of town when they really hit, and it was a mess trying to get meds. Almost went to the ER, as very little was touching the pain and nausea. In all honesty, I didn't want to deal with the 'headache workup', which would include a spinal tap for me, having had meningitis before. I am a big chicken about certain things, and that is one of them (the dentist is another!!) I'm also feeling a bit of my old PTSD. Its amazing how we can lay things down, and then without warning, something triggers it all again. I will see a therapist in May, and until then am sticking with prayer, my self help books, good friends, and xanax in a pinch!!

I'm going to try and be on here more often. Please know you all are very much loved!!!!

[lionandlamb]

Ok....I had to laugh about this....Not because it isn't a smart invention, but because I was talking about getting a retractable bat, that I could whip out of my purse and smack some well-deserving smartass this week....I figured something in a nice metalic pink or red would do quite nicely....(off to work on my aggession issues....)

[Shyfemmekat]

Hey everyone!!

I feel like I have missed so much!! Shy-I understand about the prescription issues!! Being on chronic pain meds, I have to count them out for the month, because if they are gone, they are GONE!! Do you only get them by mail order? Some pharmacies will give a 2-3 day supply if its emergent. Maybe the scrip could be transferred to a local walmart or something??

I wish I had the energy to address everyone individually, but I am wiped out!! I do keep this list in my prayers, as I know we each face our own giants every day. Here's the latest from this corner of the world....

I seem to be in a 'cluster headache' cycle. Gotta love those migraines!! I was out of town when they really hit, and it was a mess trying to get meds. Almost went to the ER, as very little was touching the pain and nausea. In all honesty, I didn't want to deal with the 'headache workup', which would include a spinal tap for me, having had meningitis before. I am a big chicken about certain things, and that is one of them (the dentist is another!!) I'm also feeling a bit of my old PTSD. Its amazing how we can lay things down, and then without warning, something triggers it all again. I will see a therapist in May, and until then am sticking with prayer, my self help books, good friends, and xanax in a pinch!!

I'm going to try and be on here more often. Please know you all are very much loved!!!!

It's a freebie deal they mail to me. I am going to make use of the Tramadol during the waking hours. Given the circumstances I am actually going to take the 3 I am allowed a day, which I never do.

Have you had the LP (spinal tap)? I had the guided needle one and it wasn't that bad. People who are not skinny should have the guided needle one done, that's what I was told, so I did.

Yeah I got my PTSD triggered last night for a bit. There's a thread on here about Alec Baldwin and it's a clip of him yelling at his kid. Man, it took me back to the old days. I was shaking later on that night, remembering some of the crap I went through. Thank you God that I was ornery enough to hang in there. At least now I have a chance to give something back to someone else.

Love you, Chiquita Banana.
SFK

PS that cover you sent me is warm as toast!

[Shyfemmekat]

Ok....I had to laugh about this....Not because it isn't a smart invention, but because I was talking about getting a retractable bat, that I could whip out of my purse and smack some well-deserving smartass this week....I figured something in a nice metalic pink or red would do quite nicely....(off to work on my aggession issues....)

Well, I think purple would be dandy. I used to have a shillelagh, and someone, my ex-husband I think, swiped it out of my car. It was a beauty, too. Braided leather strap and nicely burnished leather, my dad's.

SFK

[RblHarley4]

Thank you for the kind words! I had my evaluation from the neurologist yesterday. So we'll see how it goes. If I get turned down, I'm getting a lawyer to appeal it. I wish you all the best as well. Thanks again!

. . . . . . *quoting from one of my favorite songs from rem* .....

.. Everybody hurts. Take comfort in your friends.
Everybody hurts. Don't throw your hand. Oh, no. Don't throw your hand.
If you feel like you're alone, no, no, no, you are not alone! ..

the song is here .. if you'd like to hear it .. sometimes i use it when i feel like i can't seem to .. get anywhere in this world!!
http://www.minibite.com/heartache/everybodyhurts.htm

***** hugz .. peace & strength to all .. *****

[espresso]

Ok....I had to laugh about this....Not because it isn't a smart invention, but because I was talking about getting a retractable bat, that I could whip out of my purse and smack some well-deserving smartass this week....I figured something in a nice metalic pink or red would do quite nicely....(off to work on my aggession issues....)

You are too funny! This just cracked me up! Someone must of really made you mad. Hopefully they will make amends with you.

[espresso]

Hello girlie! Hope you and your sweetie are having a nice weekend. Thank you for the link on canes.

You had asked about a good lip brush. Let me do some thinking on this, and I'll let you know tomorrow.

[Shyfemmekat]

Hello girlie! Hope you and your sweetie are having a nice weekend. Thank you for the link on canes.

You had asked about a good lip brush. Let me do some thinking on this, and I'll let you know tomorrow.

I would appreciate it. The one I have is cheap and it sheds now. ICK!

SFK

[Shyfemmekat]

You are too funny! This just cracked me up! Someone must of really made you mad. Hopefully they will make amends with you.

Shoot, they must have made her hella mad because lionandlamb is my inspiration for how to deal with people. She has the sunniest disposition and rock solid faith.

SFK

[Gossamer]

I can totally relate...I finally got a job after almost a year of searching...it was posted as "administrative & clerical support"...turns out it is quite a physical position with extensive walking, bending, stretching, and lifting. The previous people in that position climbed on desks and chairs to reach equipment mounted on the ceiling ! I did not disclose my disability in the interview because it would not have had an effect sitting at a desk. Well, the choice was quit or get it done. I managed to find a cart to carry supplies around with, and it doubles as a walker for me. Found some old remote controls for the ceiling mounted stuff, and I get 2 hours to finish what the past employees did in 45 minutes, but that was the only accommodations they felt I needed. My limp is not so invisible, but otherwise everyone sees me as strong and able-bodied. As a butch, I'm not so lady-like, so they figure it's natural for me to climb on furniture or run cables in a classroom (which it used to be, so I do it, but now it's slow and sometimes painful).

I'm grateful I CAN do it, and in the end it's like a workout at the gym everyday, so it just might make me stronger. It's been two weeks and I'm still kickin' so who knows...maybe it wasn't what I wanted, but what I needed to get stronger and get back on two wheels!

Thanks for the website...it's hard for me to do what I do everyday and no-one knows it or acknowledges it..at least you guys listen and understand

Wow, I can only imagine what it takes out of you to keep up with that kind of work. Your attitude about it rocks. I hope good things come of it for you.

I've been interviewing for a few clerical positions. Get the impression I'm filed under "hell no!" as soon as I wheel in.

[Gossamer]

hey gossamer, .. i'm so sorry yer hav'n such a hard time right now!! i've heard those pain clinics are great .. my daughter has spinabifida-occulta and has had to have 3 surgeries so far (shes 13) and the last time they had to 'scrape all the scar tissue from around her nerves while in there .. NOTHING seemed to help her pain and discomfort .. so they brought in a person from the childrens hospital's pain clinic to work with her and it really did help.. !!!
i understand the ''no joy to be around", snapping and all the other feelingz ... i tell eVeRyOnE .. 'when i'm hurting .. i'm best left alone .. my anger ( i believe ) comes from being TIRED of hurting ... my old neuro once told me ... ''when you are in sooooo much pain .. it takes EVERYTHING you have to just ''get by'' ... so its harder for you to ''remember things'' and harder for you to ''deal with life'' ... it takes all your energy to focus on your pain and how to try to keep it 'under control'.." ...... i think he was right!

my best to everyone here!! hope all have as good of day as possible!!

Thanks, I don't know a lot about pain clinics, so I'm kind of iffy about it working. Appreciate your input.

I hope your daughter is doing well.

Gotta agree with your neuro there. Although, what's really frustrating me about this mood stuff is, this pain is not new. My condition was present at birth, and the pain's been pretty much static (with a degree of ebb and flow, but never just gone) forever. You'd think coping mechanisms would evolve somewhat. But I guess that's the nature of pain. Can't recreate or truly remember what it was after it has abated somewhat, can't ever convince your nervous system to ignore it. It's quite an unpleasant position to be in, but here I am, preaching to the choir.

[CalCowboy]

Wow, I can only imagine what it takes out of you to keep up with that kind of work. Your attitude about it rocks. I hope good things come of it for you.

I've been interviewing for a few clerical positions. Get the impression I'm filed under "hell no!" as soon as I wheel in.

thanks for the encouragement, it helps and I really appreciate it

if you've been dealing with this all your life, you probably know a lot of the resources available to you to find a job...I was signed up with a few of them, but I was determined to work for a specific employer and eventually got my job w/o them, but along the way I got "hints" about resumes and interviewing etc. from them. It really comes down to a numbers game, go on enough interviews and eventually one will hit...I noticed they mostly ask the same questions and I refined the answers until they heard what they want to hear (just don't sound rehearsed )it can definitely be a full-time job to get a job...if you're interested I'd be happy to talk with you about it...your profile says your dream job is teaching...are you looking at schools to work in ? Don't give up...we never know what's around the corner

[Jules]

Wow, the thread has had a busy weekend! The spousal equivilant and I went to our " summer home" over the weekend. Its a travel trailer parked in "resort." I love it out there because it is so peaceful, and lots of trees and nature. Sadly, we are selling it due to the fact that its just too much for us to keep up with. It does demand quite a bit of work in the beginning of the season. We spent 2 days blowing leaves off of our lot, only to have the wind pick and and blow them back!

I would love to respond to everyone individually, but right now I just don't have the energy, and my mind is operating in one of those "fogs" someone mentioned earlier.

I hope everyone is doing well. Miami, I hope you get that toe looked at pretty soon. That's scary to have foot problems and diabetes...I hope your next ER experience is a bit more positive.

I guess I'm just too tired to type much more. Again, everyone are in my thoughts and prayers...

[Gossamer]

thanks for the encouragement, it helps and I really appreciate it

if you've been dealing with this all your life, you probably know a lot of the resources available to you to find a job...I was signed up with a few of them, but I was determined to work for a specific employer and eventually got my job w/o them, but along the way I got "hints" about resumes and interviewing etc. from them. It really comes down to a numbers game, go on enough interviews and eventually one will hit...I noticed they mostly ask the same questions and I refined the answers until they heard what they want to hear (just don't sound rehearsed )it can definitely be a full-time job to get a job...if you're interested I'd be happy to talk with you about it...your profile says your dream job is teaching...are you looking at schools to work in ? Don't give up...we never know what's around the corner

The only resource I'm aware of/have access to in my area is BVR. I've been involved with my local bureau of vocational rehabilitation since I came of age to work, and I wish I had nicer things to say about the agency. The people there are well meaning and I'm sure that it is very difficult to do that type of work. But endless games of phone tag, appointments months apart and a caseworker who seemed ever unclear on the details of my situation (I must have a file! lol) have shattered my confidence in them, and I've chosen to do what I can on my own. Which is, basically, apply and interview for jobs in the classifieds. I did go to the county employment office once, but was promptly referred to BVR.

I would be very pleased to talk to you about this further, if it wouldn't be a bother. Curious about those hints. Thanks.

[espresso]

Thanks for the website...it's hard for me to do what I do everyday and no-one knows it or acknowledges it..at least you guys listen and understand

Hello! I totally understand about invisible disabilities! When most people meet me, they always say they would never guess I have MS. I wish you the best of luck on your job. Just please remember that your health and well being are the most important!

[espresso]

I've been interviewing for a few clerical positions. Get the impression I'm filed under "hell no!" as soon as I wheel in.

I wish you the best of luck with looking for a job! It's a very hard thing to do, for it's like a full time job in itself.

[espresso]

I would love to respond to everyone individually, but right now I just don't have the energy, and my mind is operating in one of those "fogs" someone mentioned earlier.
I guess I'm just too tired to type much more. Again, everyone are in my thoughts and prayers...

Please take care of yourself. I totally understand extreme fatigue. I deal with it daily. Thank God for Starbucks!

[espresso]

I would appreciate it. The one I have is cheap and it sheds now. ICK!SFK

I sent you an email regarding a lip brush. I didn't post it here, because I don't want to disrespect the topic of this fabulous thread, which I'm thoroughly enjoying!

[espresso]

Hello to everyone! Please forgive me for my multiple posts. I'm trying to learn how to say everything in one post. I hope that makes sense!

I hope everyone had a nice day today. Everyone on this thread is in my thoughts and prayers!

[MiamiButch]

Sorry I haven't posted lately, but outside of my constantly dripping, allergy ridden nose, I've been feeling ok. My nurse took a look at the burns on my toes and said they looked ok, but that I should get some antibiotics from my doc, since there's a slightly red area right under them that's she's a little worried about.
There is NO humidity today, so my knees feel WONDERFUL! Now if I could only get my nose to stop dripping all over the place. I'm sitting here with two qtips stuck up my nose to stop it from dripping on the keyboard while I type... Talk about a visual! lol
As far as retractable canes, I think I saw something of the type in my local medical supply store. I'll ask around. As far as that retractable BAT, they've got retractable BATONS, called asps, but unfortunatly, they either come in basic black or boring steel. SORRY! Then again, it's kind of a relief, don't want you getting arrested for assault! lol : )

[MiamiButch]

Sorry about this other post BUT....
Shy, your lipbrush is in the MAIL, remember I told you I was sending you that mini makeupbrush thing?? lol