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

[Jules]

How would you feel, after checking in with your boss, which I do weekly to make sure my department is running smoothly, your boss told you they were bringing someone in to "consult" in the running of my lab. I know if I hadn't have called, they wouldn't have told me. My techs called me today as they brought this "consultant" around and introduced her. Would you feel blindsided that they chose to do this while I'm out on extended sick leave? Would you feel you job is in jeapordy (even thought they asuure me it's not)? Supposedly this person is there to help with administrative things, the things that I take care of. How's she supposed to know what to do if I'm not there to show her. I can't help but think something's afoot and I've now worried myself sick, literally. Also, I'm wondering if I have recourse legally for them doing this.

I do know the reputation of this person, and its not a good one. I feel for my techs because I know she's going to swoop in there and try to change policies and procedures, all with the blessing from my boss and without in in put from me. This whole situation has made me emotional, depressed and weak. I really don't know what to do.

One of the other supervisors did go in and tell our boss that she felt they were doing me wrong and what kind of impact this is having on my recovery...depression and fear certainly don't help when one is trying to get well as quickly as possible.

So, there we have it...any thoughts? Feel free to call my boss bad names if so inclined...lol...I'm kiding on that one. My immediate boss in only doing what the director of the lab has requested. The director and I have never been on good terms, that's why he's looking for a "back door" to quietly usher me through. *sigh*

Jules
Who may spend healing time at home looking for a job

[sapho32]

Oh Jules that sucks! If your boss doesn't support this administrator being there, then not saying so to the lab manager is just weak. Not sure about legal recourse - your company's HR person should be able to direct you. Unless of course they are like Dilbert's Evil Catbert.

The urgent care doc told me I have Acute Reactive Bronchitis. It's about as fun as it sounds. All in less than 24 hours. I have this cough syrup (prescription) that is supposed to knock me out, inhaler, and some other prescription cough pills. If I don't get better in a few days, I'm supposed to do antibiotics.

I'm not happy.

SFK: I've had panic attacks, and this was definitely not one of those. I haven't had one of those in...gosh...about 8 years. This was definitely a bronchial, chest thing. Thanks for all your healing thoughts. Hope to feel up to PMing you later.

On a cute note, my little kitty won't leave my side. She is following me to every room. What a doll!

[lionandlamb]

Hey everyone...

Jules!! I am so excited to hear of the weight gain! The energy boost is probably more exciting, but I'm kind of a data person, so I can totally relate to numbers. I'm so psyched for you and glad things are turning around!

For the other single folks, I'm with ya!! The market is a nightmare, and I think I'm in the clearance section of walmart!! I want to be with someone and have someone to share the load, but learned very recently that there are too many people that say one thing and mean another. I've come to appreciate my routines and not having to share my space. Someone asked me if I was dating and I responded I have become the crazy cat lady. I watch Boston Legal in the evening, with the cats curled up, while I do a sewing project . I think in another life I was an extrovert....I just don't quite remember how to do that now....

Shy-as always, you have my deepest respect for the advocacy you do for all of us. With the information I gained from you, I've been able to help some clients have access to meds they can't live without. You have my support always!!

I look forward to being around more and connecting again you guys....Talk to you soon....

[hellboi]

wow...hasn't been a post on here in a while...today was a very lonely feeling day for me, with Cancer. Some are up days, and I'll write notes to those who need a lift, which lifts me. Today? Days like this just happen, and many of those on this thread are partnered. I was single when diagnosed, and to think of dating again, of even finding someone caring who wants to talk with someone with a disability is quite daunting. Perhaps someone here is interested in intelligent conversation...I'm just looking for intelligent signs of life in the universe when the nights get long. Most of the time I can manage to keep positive.

Life has it's funny twists and turns...but don't count yourself out....love found me. you see..I had already had a cancer removed...and had radio-isotope therapy before I met my partner. She took the chance...and...we ending up living together for a couple months..then broke up...and only decided to get back together *cohabitationally* after being diganosed with bone cancer and having my right leg amputated.
There are remarkable people out there..exceptional people...they just seem to come along when you least expect them.

[bigbadbutchdaddy]

yes,, there are some remarkable people out there...i'm finding that out, Hellboi And I'm thrilled for you. Good friends...well, can't be beat. Jules, my thoughts and prayers are with you and I wish you a successful resolution to the job thing. Sapho, you may have the best of all worlds with a critter who loves you! I look forward to getting to know all of you better. Amazing site! TYVM for all being here and being who you are.

[Jules]

Thanks everyone for your wishes over this job thing. I can't keep it out of my mind, and now I'm even more depressed, considering that. I'm feeling really anxious and geez I don't want to feel this way for serveral more weeks before I go back. *sigh*

Sapho, hell boi and bbbd, thank you so much for the well wishes...by the looks of thing I need to send out an SOS for those!

Glad to see everyone feeling better, I'm sure the optimism and love that just shoots our of my monitor will help.

[Shyfemmekat]

Where are my fellow insomniacs??? Shot is getting through the bad part now, and I can't sleep....

SFK

[Shyfemmekat]

Oh Jules that sucks! If your boss doesn't support this administrator being there, then not saying so to the lab manager is just weak. Not sure about legal recourse - your company's HR person should be able to direct you. Unless of course they are like Dilbert's Evil Catbert.

The urgent care doc told me I have Acute Reactive Bronchitis. It's about as fun as it sounds. All in less than 24 hours. I have this cough syrup (prescription) that is supposed to knock me out, inhaler, and some other prescription cough pills. If I don't get better in a few days, I'm supposed to do antibiotics.

I'm not happy.

SFK: I've had panic attacks, and this was definitely not one of those. I haven't had one of those in...gosh...about 8 years. This was definitely a bronchial, chest thing. Thanks for all your healing thoughts. Hope to feel up to PMing you later.

On a cute note, my little kitty won't leave my side. She is following me to every room. What a doll!

Wow, I had forgotten about Catbert.

Well, I'm glad they know what it is and I hope you get over it very soon. I tell you, animals KNOW and they will love you up while you're getting better.

My kids and I are the only ones up. Rhon ate some supper and went to bed. I'll try again in a couple hours.

Best,
SFK

[Shyfemmekat]

Life has it's funny twists and turns...but don't count yourself out....love found me. you see..I had already had a cancer removed...and had radio-isotope therapy before I met my partner. She took the chance...and...we ending up living together for a couple months..then broke up...and only decided to get back together *cohabitationally* after being diganosed with bone cancer and having my right leg amputated.
There are remarkable people out there..exceptional people...they just seem to come along when you least expect them.

hellboi, I can't rep you, so I'm gonna whine about it, LOL.

This is so true, I find it to be reality in my life. When I came out I lost friends. Now that some time has passed and I have weeded out the one-sided relationships great people are beginnng to show up. WOO HOO!

Most of the amazing people in my life are from this thread!

PS I love your new blurb about your demolition derby darling wearing your ring. That is precious...

SFK

[koop]

Where are my fellow insomniacs??? Shot is getting through the bad part now, and I can't sleep....

SFK

Waves from over here to Shy but I am starting to get ready to go to bed. Need to paint tomorrow!

[Shyfemmekat]

Morning, folks. Well, I finally got some sleep. UPS came today with my itinerary. Wow. Car service is picking me up at 7AM! I'll be in Washington by noon Thursday. Looks like I will have enough time to get a nap. YAY for naps!

It's a different hotel this time:

Hotel Monaco
http://www.monaco-dc.com/index.html

It looks very nice. There is going to be a dinner at this place:

Poste-Moderne Brasserie
http://www.monaco-dc.com/mondcm_dining.html

Woo, I don't eat red meat but I am sure there will be something there I can eat. I am so not a food snob. Coffee, yes, food, no. I am a down home kinda eater, things like chicken, burgers, etc.

I have to go straight from the meeting on Friday to the airport! Aaaaaaugh. I always wear jeans when I fly. I guess I will see if I can change really quick after the meeting before we head to the airport. I refuse to fly in dress clothes.

Shot is worn off so I am going to do laundry and then catch up on sleep some more. Hope you are all having a great Saturday!

SFK

[Peregrine Magic]

Life has it's funny twists and turns...but don't count yourself out....love found me. [...] There are remarkable people out there..exceptional people...they just seem to come along when you least expect them.

I've come to appreciate my routines and not having to share my space. Someone asked me if I was dating and I responded I have become the crazy cat lady. I watch Boston Legal in the evening, with the cats curled up, while I do a sewing project . I think in another life I was an extrovert....I just don't quite remember how to do that now....

Yeah, I hear this (except I was never an extrovert). I was married twice for a total of 24 years and then involved with someone else, not living together, for another four. I have learned to value my autonomy, which was a s-t-r-e-t-c-h for me at first since I was too dependent. Still, I wish I had a chance to have a healthy relationship... assuming I would recognize one...

My techs called me today as they brought this "consultant" around and introduced her. Would you feel blindsided that they chose to do this while I'm out on extended sick leave? [...] I can't help but think something's afoot and I've now worried myself sick, literally. Also, I'm wondering if I have recourse legally for them doing this.

Jules, I can understand why you’re alarmed. It might have been different if you’d been notified the consultant was coming in, but you’ve got to be suspicious given you weren’t. I hope the boss just didn’t want to bother you while you’re recovering and that it’s not a political move. Good luck!

The urgent care doc told me I have Acute Reactive Bronchitis. It's about as fun as it sounds. All in less than 24 hours. I have this cough syrup (prescription) that is supposed to knock me out, inhaler, and some other prescription cough pills. If I don't get better in a few days, I'm supposed to do antibiotics.

Nothing like dragging yourself down to urgent care when you’re already feeling lousy. I hope you’re feeling much better today.

Waves from over here to Shy but I am starting to get ready to go to bed. Need to paint tomorrow!

You’ve been busy! I actually have been moving furniture and artwork for the last few days myself after returning from my cancer retreat. It was so spare and serene there that I came home to see that I have way too much stuff. Now that I’ve taken down a lot of artwork I probably should paint the walls again, or at least touch them up. Ah, spring...

Peregrine
PS: Shy, let me know if any of the tracks skip. I am still learning to use the new computer and I didn’t realize that iTunes is a little touchy when burning a CD. I’m happy to send another.

[Shyfemmekat]

Hey Precious P,

I will try it out tomorrow when Rhon goes back to work.

I hear you about decluttering. We have waaaay too much stuff and lately it makes me feel like I can't breathe. Crazy, huh?

SFK

[sapho32]

Morning. It was a bit of a rough night for me but I'm feeling a little better this morning. I'm hopeful of feeling better throughout the day. On the agenda today: nap, drink tea, watch a movie, nap, and drink more tea.

Shy: glad you made it through your shot. Those sound way uncomfortable!

[Peregrine Magic]

'Morning, Shy.

I'm glad you're going. I know you'll charm them. I'm with you about flying comfortably, and I've never even had a blood clot! I always wear a big loose dress and shoes I can slip off. (I'm also with you on the food thing, actually, but I am trying to eat in a very healthy way given the situation.)

I hope you get a good nap.

Hugs and butches,
Peregrine

[Jules]

Morning, or afternoon I guess. I can really tell depression has reared it's ugly head. I stayed in bed until 2PM and then really didn't want to get up, but we're going over to some friend's house tonight for a birthday party...my first social outing since NY's Eve, so I forced myself up and showered and dressed in what Diana likes to call my uniform: Levis 501s, Lauren button down shirt, Lauren sweater vest and my ever present Bass Weejuns. I think there would be mass hysteria is I swayed from this ensemble, oh, sometimes the Weejuns are replaced with cowboy boots, but there's little variation.

Shy, the trip sounds neat they seem to be meeting your traveling needs. I know you'll do well in your representation.

PM, you're sounding a bit better today, I hope things are looking up for you daily.

Koop....don't over do it!!! I remember before surgery, but during the bad portion of my illness we had friends over for a painting party and did the living room. I just scooted my skinny rear along the floor and did the base boards but that wore me out! So rest when you need to.

Sapho, I hope this finds you feeling better later in the day. How was the movie? What did you watch? We still have DaVinci Code here that Diana bought for me months ago, I still need to watch it. I loved the book, so am excited about the movie, but just haven't felt like sitting through it. I hope you enjoyed yours.

And, please forgive any typos as I am writing this without my glasses...I'm blind!!! Last night while I was fixing some soup, the left lens just fell right into my bowl! So, Diana took them this morning for repair and I can't find my spares....

Hoping for a good day for everyone!

Jules

[Shyfemmekat]

'Morning, Shy.

I'm glad you're going. I know you'll charm them. I'm with you about flying comfortably, and I've never even had a blood clot! I always wear a big loose dress and shoes I can slip off. (I'm also with you on the food thing, actually, but I am trying to eat in a very healthy way given the situation.)

I hope you get a good nap.

Hugs and butches,
Peregrine

Dear goofy friend,

Thanks. That means a lot. I am going to try out your CD today once I have gone back to bed and gotten a couple more hours of sleep. Am going to call you tonight or tomorrow night.

Love and butches,
ShyFemmeKat

[Shyfemmekat]

Hey Jules,

Depression is kicking my butt right now, so I can sympathize. Woke up after a couple hours of sleep. It never fails to amaze me how the people who could most benefit from sleep often have the hardest time getting it.

I've never dropped my glasses lens in my soup. However, I used to have a pager that clipped to my jeans. One time I fixed my jeans waistband and the little blue pager shot off my waistband right down the toliet. My dad teased me about it for ages."Hello? Hello? Honey, it's an alligator calling for you, do you want to accept charges?"

SFK

[Shyfemmekat]

Woke up after a couple hours of sleep. It never fails to amaze me how the people who could most benefit from sleep often have the hardest time getting it.
SFK[/B][/COLOR][/SIZE][/FONT]

It amazes me too the other way, I have a problem right now with too much sleep and fatique, Too bad we both could'nt trade a few hours of sleep and not sleeping with each other, I mean really how much is humanly possible for one person to sleep?[/QUOTE]

I'm saying...hey, how did you post in the future? LOL

SFK

[curley]

Woke up after a couple hours of sleep. It never fails to amaze me how the people who could most benefit from sleep often have the hardest time getting it.
SFK[/B][/COLOR][/SIZE][/FONT][/QUOTE]

It amazes me too the other way, I have a problem right now with too much sleep and fatique, Too bad we both could'nt trade a few hours of sleep and not sleeping with each other, I mean really how much is humanly possible for one person to sleep?

[Peregrine Magic]

It amazes me too the other way, I have a problem right now with too much sleep and fatique, Too bad we both could'nt trade a few hours of sleep and not sleeping with each other, I mean really how much is humanly possible for one person to sleep?

I'm saying...hey, how did you post in the future? LOL

SFK

I'm so sleep deprived I think I've lost my foothold in time. Did you just reply to a post that hadn't been written yet? What year is it? Who's the president?

Peregrine

[Jules]

Woodie,
I'm with you on the sleep issue. I have this tube coming out of my side and everytime I roll over or something I wake up because it pulls on it and boy does it hurt! I'm sure that since you've been on the Ambien for a short period of time, you should be able to stop using it without too much difficulty.

Hooray for the media and professionals to start recognizing TBI as a valid issue for people. I know this has always been a concern for you since you live with it.

I hope this finds you and Rosie well, and before long, hopefully with PT you won't be swinging that huge cast around.

Went to the doctor today...3 more weeks off work. Healing, but slowly, blood work a little "off" and left the damn drain tube hanging from my side in. Hopefully my next appt. before I go back to work he'll take it out!

Love to everyone and hope we're all having a "good" day...good for most of us is subjective.

Jules

[Jules]

Apparently the timing in here is messed up, I replied to Woodie, but it posted before hys...go figure. I'm still thinking all of us sleepless night owls should meet in chat and make a room where we can chat the night away, or at least until we think we can go to sleep. I was up playing computer games at 2:30 AM this morning...woke up and couldn't get back to sleep. Next time, I'll come see if anyone's on BF and we can set up a little late night party!

Jules

[curley]

I'm saying...hey, how did you post in the future? LOL

SFK[/QUOTE]

LOL ...how the heck did that happen? I cant even find your orginal post....this is not a weird neuro /brain lesion thing,,its weird computer thing, thank havens.

[Peregrine Magic]

Hi, Andrew. How great to see you. (You take it easy with the typing, though.)

Rosie told me that now on Fox news, CNN, & other news shows the reporters are reporting about how many folks are living w/tbi (traumatic brain injuries) & how it is the silent epidemic according to the cdc. Finally it is becoming more mainstream!

The media is reporting about it because they're finally noticing how the government ignores soldiers after it's used them up. (This is not a big surprise to anyone who has ever talked to a Viet Nam vet. ) With all of the bombings over in Iraq, TBI is an increasingly common injury, yet the VA has been able to save money by under diagnosing and under treating TBI because of its relative invisibility.

I started to say it makes me wish there were a Hell, but really I just hope the people who made these cost cutting decisions will somehow regain the compassion and capacity for shame they were born with. <shaking head>

Blessings...
Peregrine

(BTW I'm replying to a post which comes after mine. I think we've it a wrinkle in the space/time continuum, Captain.)

[Woodie69]

Hi All,

I am still taking Ambien, which I hate to take. I cannot sleep w/this huge bulky cast/splint on my arm. I have always slept on my stomach, or spooning w/Rosie - and now I have to sleep on my back - ugh! I cannot sleep any other way except with Ambien. I just hope and pray that I can stop taking it after my cast/splint is off. I am suppose to start pt this week for rehab.

Rosie told me that now on Fox news, CNN, & other news shows the reporters are reporting about how many folks are living w/tbi (traumatic brain injuries) & how it is the silent epidemic according to the cdc. Finally it is becoming more mainstream! Depression has always kicked me in the a**. It is a constant battle, and is a direct result of my tbi. I wish the medical researchers could figure out how to stop it dead in it's tracks. That is the hope I always pray for.

Love & Peace,
Andrew

[micpfef]

Forgive me if I am repeating any of this. I still have not gotten my wheelchair but supposedly it will be next week. The first one I got was a piece of junk!!!!! I was out in it 2 different times - one short trip and one longer trip and I totally pretty much demolished the thing. Bent both foot rests and the brakes on both sides of the back tires. Joy oh Joy. So I made the people take it back and this was like at the beginning of February.

They didn't call me back for a long time after I returned it and then I finally got ticked at them and called to ask about it. They gave me a royal run around with finally me threatening to report their asses to Medicare for fraud and misrepresentation. Well that put a supervisor on my case which actually got some stuff done at a different pace. But still it has been slow because the "cheaper" chair they wanted to order was on backorder and then they found out it was backordered again which finally led to a call to me to say we found another chair. The guy made it clear on the phone that this chair was "much more expensive" so he wanted to make sure it would be okay.

The whole fight with the equipment place had me in tears awhile back. Now I am just in pain. I am setting up physical therapy again *sigh* because I have some nerves trapped in the scar from the surgery in 2005. Also my joint just burns much of the time with a red hot pain that wont' go away. At least typically I can get out of bed without losing my feet under me anymore.

I was fit for new braces - arizona lacer instead of the AFO i have. I went to pick them up and they were not made right and did not fit correctly. The brace guy was rather befuddled too because the company typically does not make this type of error. My comment to him was well when you are "of size" many things are not done right to fit you. He wasn't quite unsure how to reply. The benefit of the Arizona Lacer is that my heel will be fully covered and i won't have to deal with heel blisters anymore. But it is also bulkier and still not attractive. Maybe I can put stickers on this one though and make it pretty. Or maybe colored tape would work well. Or i could also do a fabric cover up on it - like an oversock.

I am so tired of being sick and I don't deal with some of the things others here do. But some days I feel like it is not a simple one thing or another but every thing on my body is falling apart.

This move has been hard on me. I still thankfully feel that it is worth it though. But learning a new "system" for this state is hard to do and leaves me fearful sometimes with my medical care. I am also tired of being my own self-advocate but I don't quite trust anyone else with that responsibility. When you give it to the gov't you end up shafted big time.

I get to find out if I need a root canal on Wednesday *sigh* with a new dentist whose office staff already has made me leery so we shall see. I do get to get new glasses this week so that will be nice also. But gov't frames are just so not attractive.

So, I wonder about this sometimes.... I have had 5 gyno surgeries, 5 surgeries on my ankles, my gallbladder and my tonsils taken out. Now I am in ankle braces, starting menopause (age 37), got approved for a power chair... it does get better right? Or do I have to constantly look for the dim light in the darkness of my health at times?

Sorry all, I think I am just in a pity party state and I really just needed to vocalize it someplace. So thanks for being here. I do know there is a rainbow in every storm (someplace anyway).

Take care all,
Michele

[Shyfemmekat]

I'm so sleep deprived I think I've lost my foothold in time. Did you just reply to a post that hadn't been written yet? What year is it? Who's the president?

Peregrine

Hey P,

It's still 2007, so unfortunately the W is still President. Sorry to wake you from what might've been a lovely place, ROFLMAO.

SFK

[Shyfemmekat]

Hi All,

I am still taking Ambien, which I hate to take. I cannot sleep w/this huge bulky cast/splint on my arm. I have always slept on my stomach, or spooning w/Rosie - and now I have to sleep on my back - ugh! I cannot sleep any other way except with Ambien. I just hope and pray that I can stop taking it after my cast/splint is off. I am suppose to start pt this week for rehab.

Rosie told me that now on Fox news, CNN, & other news shows the reporters are reporting about how many folks are living w/tbi (traumatic brain injuries) & how it is the silent epidemic according to the cdc. Finally it is becoming more mainstream! Depression has always kicked me in the a**. It is a constant battle, and is a direct result of my tbi. I wish the medical researchers could figure out how to stop it dead in it's tracks. That is the hope I always pray for.

Love & Peace,
Andrew

Yeah, they give me that when I am in the hospital on Solu-Medrol. I literally cannot sleep without 2 of them. They give me odd dreams, which is actually kind of fun, LOL. I understand about sleeping on your back. When I started wearing the CPAP in Jan 2006 I had slept on my side for YEARS, so I had to get used to sleeping on my back. It still feels weird but I can do it now.

Did you find any good articles about TBI to link here for us? That'd be great, I am always interested in learning more.

Hug Rosie for me!

SFK

[Peregrine Magic]

This move has been hard on me. I still thankfully feel that it is worth it though. But learning a new "system" for this state is hard to do and leaves me fearful sometimes with my medical care. I am also tired of being my own self-advocate but I don't quite trust anyone else with that responsibility. When you give it to the gov't you end up shafted big time.

[...] It does get better right? Or do I have to constantly look for the dim light in the darkness of my health at times?
Sorry all, I think I am just in a pity party state and I really just needed to vocalize it someplace. So thanks for being here. I do know there is a rainbow in every storm (someplace anyway).

Illness is depressing and hard to navigate even at best-- with lots of support and with well intentioned caregivers and providers. You must be so tired of hassling with the wheel chair people, given that they're just trying to maximize profit whereas you're struggling to retain your basic human autonomy. Damn. I ask the spirits to send the wheel chair company owners clarity about the bigger issues here and a promise that doing the right thing will bring them pride in their own generosity.

As for venting, go for it. Sometimes a pity party is better than no party at all. I think.

Peregrine
(Miserable and loving company, though not wishing misery on anyone)

[Shyfemmekat]

Illness is depressing and hard to navigate even at best-- with lots of support and with well intentioned caregivers and providers. You must be so tired of hassling with the wheel chair people, given that they're just trying to maximize profit whereas you're struggling to retain your basic human autonomy. Damn. I ask the spirits to send the wheel chair company owners clarity about the bigger issues here and a promise that doing the right thing will bring them pride in their own generosity.

As for venting, go for it. Sometimes a pity party is better than no party at all. I think.

Peregrine
(Miserable and loving company, though not wishing misery on anyone)

The bigger issues, that just nails it. That's what I try to touch on when I deal with the people I have contact with in these charity and prescription assistance programs. "Wow! Look at all the lives you are touching for the better. How lucky we are to be part of something that is creating so much positive change in the world. How many more people can we reach with this program, how much more can we do in addition to what's been done thus far?"

Party on. Better controlled venting then a meltdown, that's my motto, at least. I know I can really get melty if I don't. Partly the PTSD, maybe. Dunno.

SFK

[Woodie69]

Hey SFK,

Rosie is the one always researching tbi. I do it sometimes, but I just get so sad inside reading about it. It makes me feel like I was not worth the efforts of school teachers, dr's, and my parents. I was a misfit & nuisance to them. I find it even true to this very day. If I say tbi to someone they think retard.

[Woodie69]

Michele, PM, and others who are struggling,

Have faith. I know first hand how hard it is to have faith, and that hope comes first. You all are in my thoughts & prayers.

Much love,
Andrew

[Jules]

Its so odd how things are posting out of synch...with responses being posted before the original post....for awhile I was beginning to think my pain meds were REALLY kicking in.

Sapho, hang in there...watch some more movies, drink some your delicious tea and just relax...take all the time you need for you....you deserve it.

Woodie, it hurt when you said that about "retard." How hard it must be for you to go through life feeling you have to explain yourself at every turn. Your strength amazes me as you have survived with such a good outlook and positive vision...you are a good example for someone like me who seems to get down at even the smallest thing these days.

Shy...maybe we can catch each other tonight...I sense another sleepless night approaching...*sigh* one would think I would just do a header onto the keyboard from lack of sleep!

Good wishes for everyone tonight, as always, before I go to bed I send my wishes up above for everyone to have peace in their slumber and a good morning when they awake.

[Shyfemmekat]

Snippy...

They didn't call me back for a long time after I returned it and then I finally got ticked at them and called to ask about it. They gave me a royal run around with finally me threatening to report their asses to Medicare for fraud and misrepresentation. Well that put a supervisor on my case which actually got some stuff done at a different pace. But still it has been slow because the "cheaper" chair they wanted to order was on backorder and then they found out it was backordered again which finally led to a call to me to say we found another chair. The guy made it clear on the phone that this chair was "much more expensive" so he wanted to make sure it would be okay.

It is a damn shame that you have to do that to get something done right. What chirks me up is how many years did we pay taxes and then to get treated raw?


I was fit for new braces - arizona lacer instead of the AFO i have. I went to pick them up and they were not made right and did not fit correctly. The brace guy was rather befuddled too because the company typically does not make this type of error. My comment to him was well when you are "of size" many things are not done right to fit you. He wasn't quite unsure how to reply.

Ha, I bet not. Good for you!


I am so tired of being sick and I don't deal with some of the things others here do. But some days I feel like it is not a simple one thing or another but every thing on my body is falling apart.

Can I get a witness?! I get very frustrated sometimes because I have more than one thing and they work together to aggravate me.


This move has been hard on me. I still thankfully feel that it is worth it though. But learning a new "system" for this state is hard to do and leaves me fearful sometimes with my medical care. I am also tired of being my own self-advocate but I don't quite trust anyone else with that responsibility. When you give it to the gov't you end up shafted big time.

Amen. No one is going to advocate harder for you than you. You are wise not to trust anyone completely with that responsibility, I think.


So, I wonder about this sometimes... it does get better right? Or do I have to constantly look for the dim light in the darkness of my health at times?

I know that what I have is probably going to be incurable in my lifetime. *shrug* But it does let up sometimes and those days are like magic. I enjoy them, I try to wring every drop of goodness and joy from them I can. I am still working on my technique and I still have days when I get angry and feel picked on. I remember clearly the early days of my MS when dim light was all I could see, literally. I am only in control of certain things, and my attitude is one of them, and it is the one thing that seems to have the greatest effect on my well being overall. Some days it's hard to see the good, and I pray a lot those days and lean on others.

Sorry all, I think I am just in a pity party state and I really just needed to vocalize it someplace. So thanks for being here. I do know there is a rainbow in every storm (someplace anyway).

Take care all,
Michele

That's part of the reason I started this ball rolling almost a year ago. I had like one person who was hearing all my griping and was getting burned out and I felt like still couldn't completely understand me. I think there is a whole different level of understanding when someone has been/is in your shoes. Now we have a place where we can do that. We can touch base, whine, comfort, celebrate, etc.

I read this today and just loved it, wanted to share:

"That's the biggest challenge that any of us will ever have: to really get up in the morning and say, "OK God, what can I do to help somebody else today, how can I be a blessing to somebody else?" --Joyce Meyer

Some days I jump out of bed and feel like that. Hope tomorrow is one of them

Hang in there and keep on truckin'

SFK

[Holliday]

Jules--What became of your sketchy work situation? Did I miss a post somewhere?

Micpfef-- to you for making the "of size" comment at your braces fitting. One of the things that always erked (urked? rrrked?!?) me about my brief foray into wheelchairs was realizing how *tiny* they are compared to my hips. It was really embarrasing to have the wheels squeeling as the sides buckled against them. I nearly started a fire with that friction! My last trip to the hospital they had a different kind that made it so the area where my hips were was totally open. I've never seen that kind before, but it sure did make me a happier camper. Now I don't have to invent the thing myself (which was on my list of things to do).

Anyway, I think it's awesome that you didn't shy away from addressing the issue. IMO, it's all about changing other people's ways of thinking, not our own.
****************
I took another fall yesterday. Yes, it was kinda icy, and I was sleepy, but it reminded me how my balance and dexterity are STILL not getting any better. Plus I was carrying my precious baby aka laptop without its cover (I know, I know), and now it has a big dent and warping in one corner. Thank goodness I got the metal casing and not the plastic! The fall put me in a bad mood for quite awhile. I've gotten pretty used to the discomfort when I move, but it's hard to take all these falls! I know my cane would help keep me steady, but I'm afraid of becoming dependent on it or weakening the muscle I still have. I finally have health insurance again, so as soon as I make the calls I can see about getting a 2nd opinion on my leg (nevermind getting back on my meds!) <--this will have to function as a "going without anti-depressants and migraine meds" smilie. It sure doesn't take much to get me sobbing like that--life insurance commercials, home decorating shows that go terribly awry, baby & wedding reality shows...the list goes on.

Blah...it's "let it all out" season around here, eh?

Holliday
xox

PS-Sign me up for that late-night chat party! I work third shift, and even on my off nights I tend to sit around, dead tired and staring at the walls like a zombie. Much better to put that time to good use!

I was fit for new braces - arizona lacer instead of the AFO i have. I went to pick them up and they were not made right and did not fit correctly. The brace guy was rather befuddled too because the company typically does not make this type of error. My comment to him was well when you are "of size" many things are not done right to fit you. He wasn't quite unsure how to reply. The benefit of the Arizona Lacer is that my heel will be fully covered and i won't have to deal with heel blisters anymore. But it is also bulkier and still not attractive. Maybe I can put stickers on this one though and make it pretty. Or maybe colored tape would work well. Or i could also do a fabric cover up on it - like an oversock.

Michele

[Jules]

Wow Michele, sounds like you're getting it from all sides and up and down. Don't ever hesitate to come here and cut loose, we've all done it from time to time. I'm hoping that your steadfastness in demanding exactly what you need will make things better. I'm sure it does get tiresome being your own advocate and you wish you could just lay back and let someone else do it all. But only you know what you REALLY need and want, so it kind of leaves it up to you.

Hopefully you'll get some sort of break from all of this and be able to sit back, sort things out and relax a little. Sounds like you could use some "down" time" from all the hassles to just "chill" before the next thing pops up. That's the bad part, there's always something else, I hope for your sake its far down the road so you can re-group.

Try to take it easy honey, be good to yourself, do something for yourself that will make you happy, or better yet...find someone to do it for you!

My thoughts are with you and yes, it does get better, just sometimes our eyes aren't good enough to see that far down the road...gee, maybe those gov't issued new glasses will help

Take care!

[Woodie69]

Jules,

Thank you for your kind words. I know to you that your perspective of me is positive, and I am so grateful for that. You just have no idea of how good that makes me feel.

Inside I just feel so isolated & alone. Nobody seems to understand what is inside. It is as if it is my fault I can't understand a prescription or read and comprehend a book. But I can a book on tape. Then there is the cost involved. There are so many of us that the US Gov't wants no liability for our healthcare or our needs because it is so expensive. That is why I am for universal healthcare, long term care, prescriptions, etc. If a senator or congressman and president can have healthcare for their lifetime (and their wife and or husband) and all the other free perks, I don't see why the avg. citizen is being denied these benefits. Way too much "office politics" for my taste. I would love to see one of these guys/gals try to live on min. wage for just a week, and with my healthcare problems. Maybe then things would change. But for now, I am ready to move. Our country is going down fast. I totally blame Bush and his family for what is taking place now. $3 for a gal. of gas - come on. Who is fooling who is all I can say.

[sapho32]

Well, it sounds like many of us are struggling right now. Michelle, Jules, Shy, Andrew, PM - sending warmth if you are cold, sleep if you are tired, hope if you are down, a shoulder if you need a good cry, whatever. If you just need a good cup of coffee, I can send that too.

Saturday was a bad, bad day for me. Sorry to be gross about it, but projectile vomiting all over the kitchen sucked! Cleaning it up afterwards wasn't much fun, either. Thankfully, that stage has passed and at least I'm able to drink water and eat some crackers. I've been holding out on taking the antibiotics because it's unlikely I have a bacterial infection. But I found out today that my friend with whom I spent most of the weekend has whooping cough (EAK!), so I immediately filled that script. Gonna try to prevent that.

Someone asked about the movie I was watching: it was an older one called The Pentagon Papers, with James Spader. It was good. I also watched some horror thing (can't remember the name), and Nacho Libre. Nacho rocked! See that movie, very funny and cute. If you liked Napoleon, you'll like Nacho. Jack Black is hilarious.

Thank you everyone for creating this safe space. It's great to have it here.

Cheers,
sapho

[Jules]

Holliday,
Nope, you didn't miss anything about the job situation. I stated my piece to my boss and the people that work for me know that they have the right to question any changes she tries to make. I've told them to write down all their concerns, take them to the lab manager and be sure to record his response.

Me? I'm trying my hardest not to think about it. I go the go ahead to go back to work in 3 weeks, so in that time, I intend in getting my head in a good space, be ready to discuss things with her and welcome any suggestions she many have.