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

[Shyfemmekat]

Hi,

Was just reading some of the posts on here...

Trying to think if what I have would be a physical condition (as in I can't do somethings due to it) It's not really but I have a trach which causes some... Hard to explain.. But, here it goes..

I was born with Treacher Collins ( www.treachercollins.org )

It is something that causes your facial bones to not all develop all the way, They found out there some cells (I can't think of what they are at the moment) they just learned about it last year, but some certain cells die and them dying is what causes the facial bones to stop developing and causes you to have Treacher Collins..

Due to having Treacher Collins.. I had 16 surgeries through out my childhood.. As a baby/toddler, I had breathing problems,and even problems eating as a child...

Since I was a few years old though, I have not had much breathing problems, But I do still have a trach because "If I get into a car wreak or something happens, they "may" not be able to get a tube down my airway, (I'd honestly like for them to try it and see if they can now that I've grown up) It was also mainly put in for surgeries, Which I have not had any since I was 16 and thats my choice... I don't use the trach for anything though, it's closed 24/7...

Physically I can work, and all that... I do have to be careful not to completely over do it, because of the trach it does take up some of my airway.. But, that rarely happens, Has only happened at work a couple of times and I just had to stop for a few mins or has happened if I'm out in the sun for to long,moving around (as in something really physical)

Self Esteem.. I have my days... Some days I completely hate having tcs... Some days I don't even think about it..

I would say the most ANNOYING part of Treacher Collins, Is how judge mental people can be over it... They see me and some will "assume I'm not smart" Which I am actually very smart.. A lot of people don't give me a chance.. I've even had trouble finding jobs because they assume crap...

But, then most days I have the attitude "I don't care what others think about me, I am who I am and I can't change that,nor will I try too"

Okay, Sorry so long.. (well I was about to go with grandmother to vet office to help her with dog, then she decided to leave without me...I know she doesn't want the help...Hard headed like the rest of my family...lol

Have a good day everyone....

Welcome to the thread!

Thank you for teaching me something I didn't know. I am going through the site link you posted a page at a time.

Please post anytime.

SFK

[SirWolfalot]

Welcome!

First, Please tell your friend that it IS NOT HER FAULT! No one understands this better than I do. I just lost my partner of almost 8 yrs. for this reason.
We have been talking about it since, and we both realize it was more about COMMUNICATION. Please dont shut down.
She said she felt unloved, and unattractive, from a Butch perspective, I was humiliated, and felt extreme guilt. We allowed ourselves to become distant instead of trying to work to find solutions.
I so understand the feelings you are exper.. We used to argue about the "accomodation" issue. I have been told by the "fruits" not to discuss my ex here, so will prob be reported. I would be happy to discuss our findings with you. Feel free to PM me, and we can email.

There are a lot of phy factors in play here. I have done a bit on online research. I am surgical menopausal with neuro damage. There dosent seen to be much for that. Most studies focus on stimulating the reproductive organs. There is a new study about trying to stim the hippocampus in brain where it all starts. I have not been able to find it online again since I saw it. As with most things in life there is not a lg amt of studies into female libido. No one cares!

If you are not surgical menapausal there are a no. of products that I hear really do help. Your OB/GYN or a Natropath/Homeopathic Dr. or practicioner can help as well.

Look into BioIdentical hormones, Intrinsa, Lyriana, Provestra, LibiGel. These are a few promising things.
I would need a bit more info to help you narrow down which path to research.

Just know that YOU TWO ARE NOT ALONE.
This thread is full of wonderful, and supportive people. You found the right spot.

Communication is the key. One thing I have found over the years is that if I am not in huge amounts of pain, (fibro, arthritis & bilateral shoulder injuries), but just am feeling lack of libido, if I hold and stroke my g/f and focus and center myself on her, I get the smallest of 'stirrings' of desire and gently nurse them from there by really focusing on the connection between us and the love.

It might sound like 'hooey', but I am starting to explore some of the tantric teachings as they are especially good for people who need physical accomodation.

Another suggestion is that if you are not 'up to' it, offer to hold your partner and talk to them/pet them while they masturbate. Sometimes that will lead to more as well. :-)

peace

Wolf

[SkyWatcher]

Communication is the key. One thing I have found over the years is that if I am not in huge amounts of pain, (fibro, arthritis & bilateral shoulder injuries), but just am feeling lack of libido, if I hold and stroke my g/f and focus and center myself on her, I get the smallest of 'stirrings' of desire and gently nurse them from there by really focusing on the connection between us and the love.

It might sound like 'hooey', but I am starting to explore some of the tantric teachings as they are especially good for people who need physical accomodation.

Another suggestion is that if you are not 'up to' it, offer to hold your partner and talk to them/pet them while they masturbate. Sometimes that will lead to more as well. :-)

peace

Wolf

Great advice. Thanks.

[ArchAngel Gabriel]

just checking in. am on week 3 of working 2 jobs and managing so far even with the cramps from hell tonight. why the hades couldn't they have just yanked the whole ball of wax whilst they were already in there removing my appendix and a cyyst on my ovary to begin with (back in 98) other than this I am doing ok for now just tired very tired.


welcome new people I go by gabe here online and i have fibromyalgia.

[Shyfemmekat]

Just checking in quickly. My pain level has been bad the last few days. I'm not sure if it's the cold outside or the stress.

There have been a lot of great posts and it's nice to see!

More cards went out this morning. I'm doing a few each day.

SFK

[Camo Eagle]

Just checking in quickly. My pain level has been bad the last few days. I'm not sure if it's the cold outside or the stress.

There have been a lot of great posts and it's nice to see!

More cards went out this morning. I'm doing a few each day.

SFK

So sorry to hear that you are a bit under the weather. This weather is screwy. Here we get up to almost 80, then drop to 40 at night. Be careful and bump up your immune sys.

[SkyWatcher]

Been feeling a little bit better. Spent yesterday at Church helping with their Homeless Outreach Program. It was a good day. Helped lots of folks.

Several aquaintances have hit bad times and are now homeless. Rhoda and I are trying to help one of them get a job where Rhoda works. It's difficult to realize how close many of us are to being in the same spot.

Hope all of you are having a day filled with blessings.

[DressyFemme]

Hi everyone,

I was invited by Daywalker to come into this thread (thanks Daywalker!) to vent and to discuss my limitations. Just finished reading through most of the posts - it's taken a few weeks I am amazed by the strength and courage of everyone on this thread! I have a lot to learn from all of you.

I have major depressive disorder with generalized anxiety disorder, plus I have severe adult ADD/ADHD (Combined type, both inattentive and hyperactive). I can't exactly pinpoint a cause, but I have my theories ranging from the lack of O2 in my incubator for 20 mins while I was a preemie to the total hysterectomy I had in 2002 due to recurrent severe endometriosis (I'm also in surgical menopause). I also had radioactive iodine therapy in 1992 for Graves Disease (hyperthyroid).

Having these mental/physical issues has done a real number on my self-esteem, and I haven't always coped well. As a recovering compulsive overeater and relationship addict, I coped with the pain of these conditions (and a dysfunctional childhood) through excess food and inappropriate love/sex for a long time. I'm now happily married to my boi (5 years!) and have a healthy relationship, but I'm still struggling with food issues. God willing I will get abstinent again soon...

In 2005, I started experiencing chronic forgetfulness and disorganization and difficulty with prioritizing my work while on the job. I worked as an admin assistant to the board of a family-run ambulance company. I felt so scared and out of control.... and EXTREMELY ashamed, because up until then I had been a stellar employee, winning the Employee of the Year award in 2003 AND a significant promotion. Then my mom died in May 2006 from complications of type 1 diabetes, and the grief pushed me over the edge to where I was placed on a mood stabilizer/anti-psychotic. Three months later, I was placed on administrative probation at work for my declining performance, which I took very, very hard. I worked my fingers and body to the bone for the next few months trying to keep my job (and got an ADD coach to help me learn to manage my workload). Fortunately I passed muster and things went pretty much back to normal. I also at this time "came out" about my disability at work and requested accommodations under the ADA (all assignments in writing, help with prioritizing my assignments, and assistance with clarifying complex tasks and projects). I thought since the HR lady had a son with ADD that she, of all people, would understand what I was going through and understand my errors. Boy was I wrong on that front.

Then they got the bright idea to give me two positions at once - Admin Asst to the Board and Admin Asst to the HR Dept. It was too much on me. Although I did well with the admin work, I started having symptoms in July 2007 with the HR work, and my performance went downhill again. I tried my best to do better and was unnecessarily tough on myself for several months whenever I made a mistake, scared to death I was going to get fired for my next error, however slight. (All the while eating my way up to 250 pounds). I was ashamed of myself, of my disabilties, and felt like I was "losing it".

Then I found 3 write-ups about my history of mistakes in my personnel disciplinary file which I was completely unaware of. I literally said "what the f*ck?" and demanded to see our VP, my direct supervisor. I told her about what I had found and the next time we met (the following Tuesday) everyone (Board) was there, and she copped an attitude with me, "oh, you think you need to know everything that's in your file?" I told them I wasn't fighting the items that had been written up, but I WAS upset over not having been notified because I wanted to avoid these nasty little "surprises" coming up at my employment review (which is what happened when I was placed on probation the prior year). Suffice it to say that this meeting did not go well at all, no one cared about my point of view because they all had comebacks to whatever I said, and two other recent (ADD-caused) mistakes I had made that morning were brought to my attention and I was TOLD to "Take Responsibility!!" like a child being scolded. I was in such shock over being treated like this all I wanted to do was run out of the room. This was an office politics nightmare with my disabilities right in the middle of it!!

Suffice it to say that on October 1, 2007 I went to work and was told I was terminated from this position due to "substandard performance despite accommodations as requested by you and numerous opportunities for improvement." I seriously considered going to the Division of Human Rights to see if I had a wrongful termination case, but I didn't want to mess up my unemployment benefits, which they had agreed not to contest.

I'm now on the job hunt and have learned to refer to this as "they reorganized and my position was made no longer available", but there are scars from this experience directly related to my disabilties. I've seen a NYSDOL disability navigator specialist who referred me to VESID, and I hope that they can help me find work soon somewhere where my disabililties WON'T be an issue.

Somedays I feel like I can work as an admin again somewhere else because SHE wont be there and I DO have skills in that area and used to love my job. Other days, the devil on my shoulder creeps in and says "Who do you think you're fooling, saying you can do this when you KNOW you just mess things up without knowing and then find out when it's too late?" It's been a constant struggle. I am STILL coming to terms with the fact that I have these disabilities... I miss the "old me" that could keep numbers, facts and names in my head for instant recall!

Meanwhile I am blessed to have all of my psych treatment and meds covered by my boi's employer while I'm on unemployment. AMEN!!

Glad to be here among you,

Dressy

[hellboi]

Welcome DressyFemme....waht they did to you was toally wrong..unfortunately...empoyment laws 8as you well know*..are in favor of the empoloyer..so..it would be a tough fight.
I think you made a good decision...in leaving that stressalone..and taking the uncontested unemploymenht *though I'm sure you are also well aware..t.hat it would not have been offered to be uncontested..unless your side of the case had been very winnable*
I think the important thing to realize is...you have done what you had to do..to take care of you..and that is always a very positive thing.
They aren't the only employer on earth..and..these days..giving a bad recommendation..or anything much beyond "yes that person worked here from this date to that date...and did not steal anything"...can be the basis for one heck of a good lawsuit.
Hang in there..and keep yer head up..you will find something.

*I recommend you get a ball gag for tha dewvil on yer shoulder..you CAN do this*

[Shyfemmekat]

Hi everyone,

I was invited by Daywalker to come into this thread (thanks Daywalker!) to vent and to discuss my limitations. Just finished reading through most of the posts - it's taken a few weeks I am amazed by the strength and courage of everyone on this thread! I have a lot to learn from all of you.

I have major depressive disorder with generalized anxiety disorder, plus I have severe adult ADD/ADHD (Combined type, both inattentive and hyperactive). I can't exactly pinpoint a cause, but I have my theories ranging from the lack of O2 in my incubator for 20 mins while I was a preemie to the total hysterectomy I had in 2002 due to recurrent severe endometriosis (I'm also in surgical menopause). I also had radioactive iodine therapy in 1992 for Graves Disease (hyperthyroid).

Having these mental/physical issues has done a real number on my self-esteem, and I haven't always coped well. As a recovering compulsive overeater and relationship addict, I coped with the pain of these conditions (and a dysfunctional childhood) through excess food and inappropriate love/sex for a long time. I'm now happily married to my boi (5 years!) and have a healthy relationship, but I'm still struggling with food issues. God willing I will get abstinent again soon...

In 2005, I started experiencing chronic forgetfulness and disorganization and difficulty with prioritizing my work while on the job. I worked as an admin assistant to the board of a family-run ambulance company. I felt so scared and out of control.... and EXTREMELY ashamed, because up until then I had been a stellar employee, winning the Employee of the Year award in 2003 AND a significant promotion. Then my mom died in May 2006 from complications of type 1 diabetes, and the grief pushed me over the edge to where I was placed on a mood stabilizer/anti-psychotic. Three months later, I was placed on administrative probation at work for my declining performance, which I took very, very hard. I worked my fingers and body to the bone for the next few months trying to keep my job (and got an ADD coach to help me learn to manage my workload). Fortunately I passed muster and things went pretty much back to normal. I also at this time "came out" about my disability at work and requested accommodations under the ADA (all assignments in writing, help with prioritizing my assignments, and assistance with clarifying complex tasks and projects). I thought since the HR lady had a son with ADD that she, of all people, would understand what I was going through and understand my errors. Boy was I wrong on that front.

Then they got the bright idea to give me two positions at once - Admin Asst to the Board and Admin Asst to the HR Dept. It was too much on me. Although I did well with the admin work, I started having symptoms in July 2007 with the HR work, and my performance went downhill again. I tried my best to do better and was unnecessarily tough on myself for several months whenever I made a mistake, scared to death I was going to get fired for my next error, however slight. (All the while eating my way up to 250 pounds). I was ashamed of myself, of my disabilties, and felt like I was "losing it".

Then I found 3 write-ups about my history of mistakes in my personnel disciplinary file which I was completely unaware of. I literally said "what the f*ck?" and demanded to see our VP, my direct supervisor. I told her about what I had found and the next time we met (the following Tuesday) everyone (Board) was there, and she copped an attitude with me, "oh, you think you need to know everything that's in your file?" I told them I wasn't fighting the items that had been written up, but I WAS upset over not having been notified because I wanted to avoid these nasty little "surprises" coming up at my employment review (which is what happened when I was placed on probation the prior year). Suffice it to say that this meeting did not go well at all, no one cared about my point of view because they all had comebacks to whatever I said, and two other recent (ADD-caused) mistakes I had made that morning were brought to my attention and I was TOLD to "Take Responsibility!!" like a child being scolded. I was in such shock over being treated like this all I wanted to do was run out of the room. This was an office politics nightmare with my disabilities right in the middle of it!!

Suffice it to say that on October 1, 2007 I went to work and was told I was terminated from this position due to "substandard performance despite accommodations as requested by you and numerous opportunities for improvement." I seriously considered going to the Division of Human Rights to see if I had a wrongful termination case, but I didn't want to mess up my unemployment benefits, which they had agreed not to contest.

I'm now on the job hunt and have learned to refer to this as "they reorganized and my position was made no longer available", but there are scars from this experience directly related to my disabilties. I've seen a NYSDOL disability navigator specialist who referred me to VESID, and I hope that they can help me find work soon somewhere where my disabililties WON'T be an issue.

Somedays I feel like I can work as an admin again somewhere else because SHE wont be there and I DO have skills in that area and used to love my job. Other days, the devil on my shoulder creeps in and says "Who do you think you're fooling, saying you can do this when you KNOW you just mess things up without knowing and then find out when it's too late?" It's been a constant struggle. I am STILL coming to terms with the fact that I have these disabilities... I miss the "old me" that could keep numbers, facts and names in my head for instant recall!

Meanwhile I am blessed to have all of my psych treatment and meds covered by my boi's employer while I'm on unemployment. AMEN!!

Glad to be here among you,

Dressy

*waving hello to my penpal Dressy*

Watch your mailbox, your holiday card went out today.

We are glad to have you here! There are so many great people that take part in this thread and the support is tremendous.

Maybe leaving that job, although not in a way that anyone would prefer, might be a blessing in disguise. This might open up a whole new world of possibilities for you to explore.

I totally know what you mean about being able to recall things. Last week, since I didn't think I needed to write things down on my calendar/planners/use my Yahoo email reminders, I scheduled four appointments for the same day and two of them for the same time. Whoops. So yesterday I dragged my calendars back out again, started adding to my spreadsheet again, and I will likely spend a chunk of time Sunday adding in email reminders, etc.

Hang in there, things will get better!

SFK

[DAYWALKER]

Hi everyone,

I was invited by Daywalker to come into this thread (thanks Daywalker!) to vent and to discuss my limitations. Just finished reading through most of the posts - it's taken a few weeks I am amazed by the strength and courage of everyone on this thread! I have a lot to learn from all of you.

I have major depressive disorder with generalized anxiety disorder, plus I have severe adult ADD/ADHD (Combined type, both inattentive and hyperactive). I can't exactly pinpoint a cause, but I have my theories ranging from the lack of O2 in my incubator for 20 mins while I was a preemie to the total hysterectomy I had in 2002 due to recurrent severe endometriosis (I'm also in surgical menopause). I also had radioactive iodine therapy in 1992 for Graves Disease (hyperthyroid).

Having these mental/physical issues has done a real number on my self-esteem, and I haven't always coped well. As a recovering compulsive overeater and relationship addict, I coped with the pain of these conditions (and a dysfunctional childhood) through excess food and inappropriate love/sex for a long time. I'm now happily married to my boi (5 years!) and have a healthy relationship, but I'm still struggling with food issues. God willing I will get abstinent again soon...

In 2005, I started experiencing chronic forgetfulness and disorganization and difficulty with prioritizing my work while on the job. I worked as an admin assistant to the board of a family-run ambulance company. I felt so scared and out of control.... and EXTREMELY ashamed, because up until then I had been a stellar employee, winning the Employee of the Year award in 2003 AND a significant promotion. Then my mom died in May 2006 from complications of type 1 diabetes, and the grief pushed me over the edge to where I was placed on a mood stabilizer/anti-psychotic. Three months later, I was placed on administrative probation at work for my declining performance, which I took very, very hard. I worked my fingers and body to the bone for the next few months trying to keep my job (and got an ADD coach to help me learn to manage my workload). Fortunately I passed muster and things went pretty much back to normal. I also at this time "came out" about my disability at work and requested accommodations under the ADA (all assignments in writing, help with prioritizing my assignments, and assistance with clarifying complex tasks and projects). I thought since the HR lady had a son with ADD that she, of all people, would understand what I was going through and understand my errors. Boy was I wrong on that front.

Then they got the bright idea to give me two positions at once - Admin Asst to the Board and Admin Asst to the HR Dept. It was too much on me. Although I did well with the admin work, I started having symptoms in July 2007 with the HR work, and my performance went downhill again. I tried my best to do better and was unnecessarily tough on myself for several months whenever I made a mistake, scared to death I was going to get fired for my next error, however slight. (All the while eating my way up to 250 pounds). I was ashamed of myself, of my disabilties, and felt like I was "losing it".

Then I found 3 write-ups about my history of mistakes in my personnel disciplinary file which I was completely unaware of. I literally said "what the f*ck?" and demanded to see our VP, my direct supervisor. I told her about what I had found and the next time we met (the following Tuesday) everyone (Board) was there, and she copped an attitude with me, "oh, you think you need to know everything that's in your file?" I told them I wasn't fighting the items that had been written up, but I WAS upset over not having been notified because I wanted to avoid these nasty little "surprises" coming up at my employment review (which is what happened when I was placed on probation the prior year). Suffice it to say that this meeting did not go well at all, no one cared about my point of view because they all had comebacks to whatever I said, and two other recent (ADD-caused) mistakes I had made that morning were brought to my attention and I was TOLD to "Take Responsibility!!" like a child being scolded. I was in such shock over being treated like this all I wanted to do was run out of the room. This was an office politics nightmare with my disabilities right in the middle of it!!

Suffice it to say that on October 1, 2007 I went to work and was told I was terminated from this position due to "substandard performance despite accommodations as requested by you and numerous opportunities for improvement." I seriously considered going to the Division of Human Rights to see if I had a wrongful termination case, but I didn't want to mess up my unemployment benefits, which they had agreed not to contest.

I'm now on the job hunt and have learned to refer to this as "they reorganized and my position was made no longer available", but there are scars from this experience directly related to my disabilties. I've seen a NYSDOL disability navigator specialist who referred me to VESID, and I hope that they can help me find work soon somewhere where my disabililties WON'T be an issue.

Somedays I feel like I can work as an admin again somewhere else because SHE wont be there and I DO have skills in that area and used to love my job. Other days, the devil on my shoulder creeps in and says "Who do you think you're fooling, saying you can do this when you KNOW you just mess things up without knowing and then find out when it's too late?" It's been a constant struggle. I am STILL coming to terms with the fact that I have these disabilities... I miss the "old me" that could keep numbers, facts and names in my head for instant recall!

Meanwhile I am blessed to have all of my psych treatment and meds covered by my boi's employer while I'm on unemployment. AMEN!!

Glad to be here among you,

Dressy

(((((Dressy)))))

I'm so glad you you made it in here!

This thread can be a silent pair of stilts to me when I need it, because in one way or another...we are all people of the like. Sure, we are all worlds apart in person, sure we all have differing conditions...but we all gather here for some light, laughter, and advice when it's needed the most...lol, and it all started with Shy's energy and selflessness and her ability to see when help is needed.

I like how you described the devil on your shoulder; a sassy one at that!

I have come to understand my own shoulder demons,
as my wicked passengers.

I have also come to the conclusion that in order to keep them from whispering in my ear as a nemesis; I had to invite them to ride up front with me...so long as they keep quiet for the most part. This way, 'they' don't feel like a dirty secret and may be less likely to whisper those little sweet nothings...at an inopportune time. I own them, they are mine...like it or not...lol, so I wear them on the outside 'so to speak'. Meaning really, that it seems the less I try to hide them or keep them quiet, the less disturbing it is when they whisper. I have been referring to my symptoms as "The Children" for many years, and they not always in a good mood...and will reek havoc upon my body at will when they wanna play 'recess' and I, of course...am their playground.

The whispers, however...are different;
they are the wicked passengers that I think most of us have.

Anyways...lol, I have rambled once again, but I do want to encourage you to smile at your wicked passengers, even if just for atmospheric purposes...because they are you, they are yours...and you will all find the perfect job when it is meant to happen.

It's not a perfect world,
or where would the word 'struggle' have come from...yes?

Look forward to the little things,
and remember that ice cream has a whisper all its own.

[BlueMoonWolf]

okay so here i am at 1 am again posting my rambling thoughts about pain.. this time yes Virginia it is my own damn fault. I had a dinner party tonight for friends that have been my friends for anywhere between 10 -24ish years. These people have been around for the old me that is very much AWOL and they are getting better about not freaking out in front of me when they see another piece that was me disappear. Some of these people are the ones that would break into my apartment on a regular basis to make sure that i at least had a shower and a cup of soup that day.

Anyways back to the dinner party. So after making it look like i just whipped this meal up instead of parceling the cooking out through out the day and nuking it (btw great way to cook for a group and not fall asleep face first in the gravy boat) well even with the new meds when i start to get tired the tremors come back, oddly enough harder to control than without the meds and more violent.

yes i am getting to the point. so we were playing games and laughing and stuff.. I was laughing right along but i was also taking the opportunities presented while everyone was getting the tears of laughter out of the way to physically control the tremors and spasms.. the whole it can't twitch if it can't move theory. Funny enough it was my ex wife (maybe after 10 years i shouldn't call her my ex wife anymore and just call her a friend but i think that's a different thread) that spotted it and started to help cover for me too.

I am none too sure which would have made everyone else less wondering what the hell was going on... me twiching or my ex wife and i flirting up a storm and being all touchy feely (which btw we never were when we were together) it was a lot easier My ex stayed behind for a few minutes after everyone had left just to make sure that I was going to be all right.

so now i am sitting here all sore as hell trying to figure out why the hell was i hiding this from the people that I know with out a doubt that they love and adore me no matter what? why do i feel the need to hide the new things that are happening with this roller coaster ride of my body and this disease from the people that mean the most? I know I am not the only one that does this...

oy i think i had a point in there somewhere but i am going to go crawl under my electric blankie and watch the holiday log fire channel...i have no idea why but that plaid flannel arm that comes into the picture and pokes at the logs just makes me giggle.... wow i think i am on either very bad drugs or very very good ones.

Blue

[Peregrine Magic]

Hi, I'm back at least for the time being, and happy to be here with my fellow downers. I've been having a rather grim time with the cancer and treatments recently, leading me to spend some time saying good-bye to people and cleaning up relationships as best I can. Fortunately I have a basically submissive personality, so I am able to say with conviction to That Which Has No Name, "Do with me as you will."

I believed I could carry several cups of fluid on a tray, some chips a bit of dip to soothe the starving beast within. [...]Obviously not such a good choice. I missed the top step and twisted and turned my ankles and knees in posititions not meant to be. I also managed to crack my big toe in the process. [...] and was picked up by some charming paramedics in an ambulance. Quite exciting I must say for my first ambulance ride.

Ah, Jules... I'm so glad you are OK. I love the phrase in your story "I believed I could..." I fell for the second time in the last month a few days ago. I believed I could just stand up from the computer half asleep and walk to bed. Unfortunately my foot was fully asleep. Fortunately a friend drove me to the ER so I dodged the ambulance bill, and an x-ray showed that I didn't break anything. However I am now totally bruised all over and definitely look beat up. Another friend of mine convinced me to get that "I've fallen and I can't get up" service they used to advertise on TV. I'm 53, not 83, but what the Hell...

Miami, Baby, I looked for your original post about having such a hard time standing, and couldn't find it. It really touched me when I read it. I appreciate how it must mess with your butch self to be in a wheel chair all of the time, and how you believed (see above) you could just get up and go out without the accursed thing. I do think you can get out of the chair, but gradually. Illness sure messes with our gender self esteem. I have different issues than you, but I get it.

So now i am sitting here all sore as hell trying to figure out why the hell was i hiding this from the people that I know with out a doubt that they love and adore me no matter what? why do i feel the need to hide the new things that are happening with this roller coaster ride of my body and this disease from the people that mean the most?

BMW if you find out, let me know. I have this issue too, but because of my fabulous excuse for everything I've been able to give up on this to a certain extent. Still, l am embarrassed when people come over and see the disarray in which I live-- even if everyone knows why it looks so bad and no one in their right mind would hold it against me.

Hi, Suraya. Do they still not know why you're so sick all of the time? It sounds awful.

Welcome to Camo, and anyone else who has no clue who I am because I've been gone so long,

((((Woody)))) Welcome back!

Shy, I'm glad to see you posting so much. Blowing you a big kiss:

Rhoda and Soren, you guys know you rock.

If I've overlooked someone, chalk it up to drugs. And an extra big kiss for you: .

Peregrine

[Peregrine Magic]

Oops, I forgot the most important thing!

CLICK ME, PLEASE

Thanks, Daywalker!


Peregrine

[Rhoda]

Hi, I'm back at least for the time being, and happy to be here with my fellow downers. I've been having a rather grim time with the cancer and treatments recently, leading me to spend some time saying good-bye to people and cleaning up relationships as best I can. Fortunately I have a basically submissive personality, so I am able to say with conviction to That Which Has No Name, "Do with me as you will."

Ah, Jules... I'm so glad you are OK. I love the phrase in your story "I believed I could..." I fell for the second time in the last month a few days ago. I believed I could just stand up from the computer half asleep and walk to bed. Unfortunately my foot was fully asleep. Fortunately a friend drove me to the ER so I dodged the ambulance bill, and an x-ray showed that I didn't break anything. However I am now totally bruised all over and definitely look beat up. Another friend of mine convinced me to get that "I've fallen and I can't get up" service they used to advertise on TV. I'm 53, not 83, but what the Hell...

Miami, Baby, I looked for your original post about having such a hard time standing, and couldn't find it. It really touched me when I read it. I appreciate how it must mess with your butch self to be in a wheel chair all of the time, and how you believed (see above) you could just get up and go out without the accursed thing. I do think you can get out of the chair, but gradually. Illness sure messes with our gender self esteem. I have different issues than you, but I get it.

BMW if you find out, let me know. I have this issue too, but because of my fabulous excuse for everything I've been able to give up on this to a certain extent. Still, l am embarrassed when people come over and see the disarray in which I live-- even if everyone knows why it looks so bad and no one in their right mind would hold it against me.

Hi, Suraya. Do they still not know why you're so sick all of the time? It sounds awful.

Welcome to Camo, and anyone else who has no clue who I am because I've been gone so long,

((((Woody)))) Welcome back!

Shy, I'm glad to see you posting so much. Blowing you a big kiss:

Rhoda and Soren, you guys know you rock.

If I've overlooked someone, chalk it up to drugs. And an extra big kiss for you: .

Peregrine

(((((((Peregrine))))))) sending you all our love from the Land of Enchantment

Rhoda and Soren

[Surayna]

We figured out one of the things making me so sick this time, but we don't know to what extent yet. I have an appt in the morning, so hopefully we will get more answers then. The lupus has been nasty lately. I should have an update in the next few days. Depends on how long it takes for the blood work to come back this time.

Hope everyone else is doing well.

Jenna

[Shyfemmekat]

We figured out one of the things making me so sick this time, but we don't know to what extent yet. I have an appt in the morning, so hopefully we will get more answers then. The lupus has been nasty lately. I should have an update in the next few days. Depends on how long it takes for the blood work to come back this time.

Hope everyone else is doing well.

Jenna

It's good to see you again. Keeping y'all in prayer; let us know what you find out.

SFK

[Shyfemmekat]

Oops, I forgot the most important thing!

CLICK ME, PLEASE

Thanks, Daywalker!


Peregrine

That was so great.

We've missed you so much! I will give you a call tomorrow evening.

Love you,
SFK

[Shyfemmekat]

All right, Precious P, I did it, too:

Scrooge Yourself ShyFemmeKat

SFK

[DAYWALKER]

Oops, I forgot the most important thing!

CLICK ME, PLEASE

Thanks, Daywalker!


Peregrine

Hahahaaa...!

I did another one too!

CLICK

[Surayna]

Just walked in from my appt this morning and I am still processing everything.

I ended up with 5 new scripts, plus the refills on my other scripts. (call me a walking pharmacy)

The worst news I got - or at least the news I am taking the hardest is that I have to go back on steroids again. I absolutely hate steroids with a passion. Not only do I have to take oral steroids, but I am also on two different inhaled steroids as well. I have this huge aversion to steroids because of the way my body reacts to them. It's a love hate relationship because they do what they need to do and help the lupus flaring, but at the same time they affect my body in ways that I hate.

I have a lot of info I need to process, so I'll be back later.

Jenna

[Surayna]

Medical Records?

I know we all have them, but do you have a copy of yours? If yes, how do you store/organize/keep them?

Has anyone heard about the USB drives for medical records? If yes, what are your thoughts?

I am in the process of filling in the missing pieces of years worth of medical records. I have bits and pieces of mine, but my doctor really wants me to collect the rest for my own records. This has been such a huge tedious task since I have lived in many different states.

I was wondering if anyone had tips or tricks to getting and storing your medical records?

Thanks,
Jenna

[Rhoda]

Soren received his new medical supplies in the mail yesterday.

A BOOBIE PILLOW!

It's the perfect size for keeping his jaw in place so he doesn't knock it out of whack while he is sleeping. He used it last night and it works great!!

[Surayna]

Soren received his new medical supplies in the mail yesterday.

A BOOBIE PILLOW!

It's the perfect size for keeping his jaw in place so he doesn't knock it out of whack while he is sleeping. He used it last night and it works great!!

Yay for Boobie Pillows! I know I love Chase's! Oh um, wait... different pillows, I'm sure. *giggles* In either case... enjoy!

Hugs,
Jenna

[Jules]

Hi Kids,
I must say its great to be back among the living, although, Ms P I'm so sorry things aren't going well for you right now, you're in my prayers.

I think now is the time for me to share what I've been through the last 3 years. Because of all the surgeries, etc., I have been in constant pain. Because of the pain I've been prescribed ungodly amounts of vicodin, to which, of course, I became addicted....up to 20 pills a day. Had it all figured out, different drs. different pharmacies.... I was set. But I slipped up and within a week it all came to a halt. Best thing that ever happened. On the day my doc said no more, I called a rehab center, went in that night and glad to say 10 days later I'm clean. It's the best feeling in the world to have that monkey off my back. I do have several weeks of intense group therapy, but the need and want for the drug is gone. I haven't been this clear headed in years....now Diana says I talk to much...I was always in such a stupor before.

Please, please, if you, or someone you know is on narcotic pain meds, please take them as prescribed....even then they can be addicting. But let me tell you, coming off a 20 pill a day habit is pure hell. I wondered if I would live through it, but I did, and thank God for my angel Diana who stood by me through all of this.

I don't want to preach....but do want to warn....please be careful with your narcotic pain meds....you may dig a deep hole like I did, and its misery clawing your way out.

Peace, Love, Health and Happiness to all of you.....

[corkey47]

Jules...
Much props to you for kicking the monkey.

I go for the non-narcotics. They don't work as well but I still have my mind, such as it is, and health.
Blessings to you and Diana

[Peregrine Magic]

Soren received his new medical supplies in the mail yesterday.

A BOOBIE PILLOW!

I pictured this pillow entirely differently before I thought it through: gigantic squishy boobies that mold to your body. I'm sure this isn't what you were talking about, but there's got to be a market for it...

Peregrine

[Peregrine Magic]

Had it all figured out, different drs. different pharmacies.... I was set. But I slipped up and within a week it all came to a halt. Best thing that ever happened. On the day my doc said no more, I called a rehab center, went in that night and glad to say 10 days later I'm clean. It's the best feeling in the world to have that monkey off my back. I do have several weeks of intense group therapy, but the need and want for the drug is gone. I haven't been this clear headed in years....now Diana says I talk to much...I was always in such a stupor before..

Jules, I'm so glad to hear this. I know it can be an uphill climb, and I wish you strength and support.

Peregrine (doing a bit better)

[Jules]

Jules, I'm so glad to hear this. I know it can be an uphill climb, and I wish you strength and support.

Peregrine (doing a bit better)

Thanks Ms P and I'm glad things are getting a bit better for you, you're in my daily thoughts and prayers.

Took the Vette out and drove like a bat out of hell.....What a RUSH!!!!

[Jules]

There is a little something else I'd like to share, it is a bit personal, but hey, my life's an open book by now. One will find with prolonged sitting at the computer (even with a pillow in the seat) one can acquire what's commonanly called a "bed sore" near the crack in their butt....just thought that little piece of information might help. While on the drugs I spent hours upon hours on the computer, and that's how I discovered this little "health tidbit."

Carry on.

[Jules]

There is a little something else I'd like to share, it is a bit personal, but hey, my life's an open book by now. One will find with prolonged sitting at the computer (even with a pillow in the seat) one can acquire what's commonanly called a "bed sore" near the crack in their butt....just thought that little piece of information might help. While on the drugs I spent hours upon hours on the computer, and that's how I discovered this little "health tidbit."

Carry on.

[Jules]

There is a little something else I'd like to share, it is a bit personal, but hey, my life's an open book by now. One will find with prolonged sitting at the computer (even with a pillow in the seat) one can acquire what's commonanly called a "bed sore" near the crack in their butt....just thought that little piece of information might help. While on the drugs I spent hours upon hours on the computer, and that's how I discovered this little "health tidbit."

Carry on.

[Jules]

geez, I didn't mean for that to post so many times.....sorry bout that, but the mesaage remains the same!

[Shyfemmekat]

geez, I didn't mean for that to post so many times.....sorry bout that, but the mesaage remains the same!

ROFL, it did drive the point home.

*giggling*

SFK

[Shyfemmekat]

Medical Records?

I know we all have them, but do you have a copy of yours? If yes, how do you store/organize/keep them?

Has anyone heard about the USB drives for medical records? If yes, what are your thoughts?

I am in the process of filling in the missing pieces of years worth of medical records. I have bits and pieces of mine, but my doctor really wants me to collect the rest for my own records. This has been such a huge tedious task since I have lived in many different states.

I was wondering if anyone had tips or tricks to getting and storing your medical records?

Thanks,
Jenna

Getting your records isn't hard but it IS expensive.

Make copies of them and keep copies for yourself. I am hoping to get a 4-drawer file cabinet next year and then I am going to finish sorting them all out by doctor name and then chronologically. Ugh. I'll be on the phone hunting down more of them tomorrow.

SFK

[Shyfemmekat]

Quick check-in. Hope y'all are doing well. I am still getting things done. Had a high pain night and once I finally got to sleep I fell out. Sometimes I guess I don't realize how much my Dammitol helps until the fibro really flares and I'm late taking it.

I'll be thawing the turkey today and planning the rest of the Christmas meal. , LOL, not.

What's everyone else up to?

SFK

[ArchAngel Gabriel]

shoveled out my car. went to church. came home and shoveled the rest of the driveway and L came home and did the walk back deck and whatnot. I will do my laundry and dishes here in a few but for now i am sitting awhile cause I do not feel very good. Jr model wanted to give our friend her gift when in reality he was wanting to go out to eat today.little does he know He also is getting a gift card to his fav eatery... a bbq called the PIT. heh. ole santa has a few tricks left up my sleeve. darn kid insisted on going to the library today even with the snow and iting cold temps. at least he wore a hat gloves and his winter coat.

I will try to finish up a couple things i wanted to make yet and otherwise spend the day not doing much of anything. It is nice to have a day off.

Merry Christmas to everyone
G

[Rhoda]

Merry Christmas Everyone!

Okay, I've been out getting another medical device for Soren today, not a big deal. But I read the directions, and NOWHERE DOES IT SAY "Use daily to pinch butt of SO". WTH??!! After going to the chiropactor he is supposed to slow down not get more onery. Do you think the Christmas Spirit has given him a shot of Brandy?
My butt hurts.

Hi Jules. Thanks for the warning, but I won't be sitting for a while.

Peregrine, It's so great to hear from you, Soren and I are VERY EXCITED to hear you are doing better!!!

Hi Gabriel, stay warm! Squeeze the young un for us.

Hi Shy, hope you feel better today.

No cooking or stuff like that at our house. We are just gonna watch movies and eat junk food.

[LADY FLAMEZZZ]

merry christmas to everyone...hoping the holidays bring you all everything you desire much happiness and much love ...hopes for a great new year and i hope all a healthier 2008....

many blessings stay warm

from our home to yours

Merry Christmas!!!!!!!!!!!!!

[Shyfemmekat]

Merry Christmas, y'all.

Turkey is in the oven and I am wrapping presents. Hope everyone is having a good day.

SFK