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

[Shyfemmekat]

As a stone femme who has MS and other conditions my life has changed because my level of ability to do things has altered. Things that were once simple have now become more difficult, requiring modifications. Acitivities that once brought me much pleasure have had to be abandoned or severly curtailed because of my health issues.

The changes on my brain have made me more emotional, more irritable, less patient. I am quick to anger and quick to cry. I forget things easily. Sometimes I have to search for the right word I want when words used to roll off my tongue without conscious thought. I become frustrated easily. It affects me socially as well.

As a result of my health issues my self esteem level is sometimes VERY low. I find myself feeling less than feminine, very un-femme-ly, for lack of a better word. I can't wear high heels any more because my balance is horrible. I sometimes wonder what I have to offer my partner, being that my condition is a chronic lifetime one that will not suddenly get better. It may only stay the same or worsen with time.

I suspect I am not the only one who feels these things. I would like to hear from others who have physical disabilities and feel these things. What is your story? Do you feel less attractive, less "femme/butch/insert your choice of gender term here"? How do you cope? What are your experiences? How do you keep truckin' on?

I would ask a few things:

1) Be respectful at all times. Not everyone here will share your POV and/or politics. That's OK. We are all different.
2) If you cannot be supportive of those who participate, please go elsewhere.
3) Not everyone who may post here will ID the same way. Someone may ID as "lesbian", another as FTM. That's okay. Quibbling about someone's gender ID, etc., is NOT what this thread is being started for. Please keep that kind of stuff out of the thread.
4) Not everyone will feel perky at all times. That is OK too. Judicious ranting about your condition is allowed.
5) This is a place of support, a place where folks can share all kinds of deep things, ask questions, etc. It is hard for some to share, so let's keep it positive and encouraging! If you have a personal issue with someone, handle it in a PM. Do not attack someone in a post to the thread. It will not be tolerated.

I believe in being up front, so:

NO DRAMA. NO FLAMING. PERIOD.

Let's get the ball rolling!

Namaste,
ShyFemmeKat

[TexasCowboi]

I dont exactly know how to respond just yet...... I can tell you that when I have a flare up....It most certainly makes Me feel "inadequate" because I sometimes dont have the energy to meet My partner's needs.... if that makes any sense..... I'll try to elaborate more on this later...

[DAYWALKER]

Yes...let us get the ball rolling...

First and foremost, Shy...I think that the guidelines you have set forth are wonderful...it is kinda hard to believe that people would be disrespectful, and flame~like in a thread of this subject base...but I have seen it happen...

I have had an issue lately with short term memory...kinda scary when I know I just had something in my hand...lol, and M'Lady find it in the refrigerator later on in the day!

I'll admit, as strong as my will and sense of humor are regarding MS...it took a few days to pull myself out of the hole of depression over this current, and yet so alarming issue...
My vocabulary is vast, and I totally relate to your statement on losing the right words to say...words we use every day...most often for me it is descriptive words that I stumble on...I have such great support of those around me...that at times I will make almost a game show with people, lol...allowing them to assist me in the words I am trying to find...it helps me laugh about it. On the other hand...I love to write, so on those days, it downright pisses me off to lose my database of words...I bytch a little, mumble a lot..lol, but I get through it.
The issue of high heels...lol, I cannot say I can relate directly...lmaooo...but I can relate to fluctuating weight issues, and I hate it when I cannot get into certain clothes that I wanna wear...so I just wait til the weight decides to subside back down a bit...I am a total Phag...lol, when it comes to my clothing...the collection takes up an entire room! Boots have to be very sturdy, I beat the hell out of them somehow...lol, and they must allow me balance. After a long days work, when I sit down for a bit...the hardest part is getting back up...once I do...lol, the hardest part is keeping a straight line...but this usually only occurs in the evenings, thank goodness...

I'll be subscribing to this thread as well as the MS support thread...and be back in and out...

Thanks for the love, Shy...it is a necessary part of a support network...yes?

[fancyfreckle]

*subscribing ~ I'll be back to jump in and share.....my POV may be a bit different, but still add to the topic.

[Woodie69]

I have a head injury. The results of my head injury has caused me to have seizures, learning disabilities, Dyslexia, ADHD, OCD, color blindness, depression, etc. I take multiple meds each and every day. Without them I would not survive. I also stutter, stammer, slur my words/sentences together, etc.

Self-esteem for me is at a constant low. I struggle with what most take for granite. Take for example, getting dressed and matching. I cannot differenciate blue from black, tan from brown. Another example, is being able to communicate well. I struggle with verbal expression.

Now there are so many different ways to tutor kids with Dyslexia. It burns me up that my parents ignored my failures in elementary school. I realize that they were not able to help me because of my father's mental illness, and my mother being invisible. What jobs are out there that don't require reading? Even as a forklift driver, I have to be able to read and communicate. The ADA protects me. As an employer, most steer clear of those who are disabled or gives them jobs that pay less.

Rosie, my partner of 25 years, knows what it is like to live with someone with limitations. She says that everyday is a challenge, and that she takes one day at a time. Every day we have a routine that keeps us on track. Plus she adds that it doesn't hurt to have wine in the house.

Both Rosie and I know that I will never outgrow my learning disabilities, Dyslexia, color blindness, ADHD, OCD, or stop having seizures. My depression has been with me eversince I can remember. I have peaks and valleys. I believe it goes with having a head injury, and the chemical makeup of my brain.

Peace to all,
Andrew

[CaCowboi]

Shy....you ARE the best ! I will be back to post more later, but now I am off on my Harley.....yes, there is life after MS....it's just slower and more wobbly....

you rock girl....catch ya later

D.

Daywalker...sorry I haven't written back...life got in the way but I'm back on track...and back on two wheels ! I'll touch base with you soon too...thanks for checkin' in

[Woodie69]

I wanted to post something about the ongoing irratation ppl have with those who have handicapped tags. I have a handicapped license. I had NO choice in getting it. I have a head injury, have seizures on a daily basis, take multiple meds daily, etc. Is this anyone's business in the general public - NO. It irratates me beyond belief that ppl look at me and "see" an abled bodied human being. Not all handicapps are visual. Some are invisable. Now, get off my back about it. Sheesh.

[Whispertome]

I agree, not all disabilities are visible, so please do not judge so quickly, sometimes MS and other physical conditons presents itself visually as something totally different

[luvin61]

I wanted to post something about the ongoing irratation ppl have with those who have handicapped tags. I have a handicapped license. I had NO choice in getting it. I have a head injury, have seizures on a daily basis, take multiple meds daily, etc. Is this anyone's business in the general public - NO. It irratates me beyond belief that ppl look at me and "see" an abled bodied human being. Not all handicapps are visual. Some are invisable. Now, get off my back about it. Sheesh.

I wear my legg braces under my clothing,,soi I get the same thing,,but I have a neighbor who uses their grandma's tag cause she is lazy,,thats what gets me..somedays it hard to function walking wise but I gotta work,ya know?
In Tn they give them out too easily with no checking on the signatures on the paperwork,,they showed on thge news where they sent in someone and they fille dout the paperwork in their car and got the parking tag,,no one checked

[TopDadddy]

I think the most important thing to remember during times of feeling like we don't have a whole lot to offer someone, is that as humans, and humans with disabilities, our senses are turned up for many of us. This often times allows us to have, display, and appreciate compassion, nurthuring, giving, receiving, struggles, the whole ball of wax, whatever it includes, to a greater degree than many others.

In my opinion that's a a WHOLE lot of something to have and to offer others.

~TD~

[micpfef]

Subscribing and will be back later to post more.... I have had a range of experiences with this and it is a recurrent theme in my life.

Good thread Shyfemme.

Michele

[ananas]

Subscribing -- hi Shyfemmekat! Good thread. I've had to start walking with a cane and while getting one with a leopard skin pattern is definitely femmey, it's definitely taken its toll on my self-esteem.

More anon...

ananas

[lionandlamb]

I agree with all the other posters....GREAT THREAD!! I have neurological damage from my son's birth. For several years, people thought I was just drug seeking and really either 1) lazy, or just depressed. The depression was part, as I never had something that completely took the pain away. I can truly say the only time I've been totally pain free is right before undergoing a surgical procedure when they slam you with the cocktails. About 3 years ago a neurologist found the abnormalities, even though he was looking for something else. Blessings come in interesting packages.

When it comes to disabilities, apparent or otherwise, it seems prudent not to judge anyone. I can't comprehend what others are going through, the same as they can't fully understand mine.

Shy-thanks for starting this thread....I think it will be a great place for many people....

[Shyfemmekat]

I dont exactly know how to respond just yet...... I can tell you that when I have a flare up....It most certainly makes Me feel "inadequate" because I sometimes dont have the energy to meet My partner's needs.... if that makes any sense..... I'll try to elaborate more on this later...

Hello TexasCowboi,

Welcome to you! Look forward to hearing more from you in the near future. Have a super day!

ShyFemmeKat

[DAYWALKER]

Shy....you ARE the best ! I will be back to post more later, but now I am off on my Harley.....yes, there is life after MS....it's just slower and more wobbly....

you rock girl....catch ya later

D.

Daywalker...sorry I haven't written back...life got in the way but I'm back on track...and back on two wheels ! I'll touch base with you soon too...thanks for checkin' in

You are quite welcome CaCowboi...it's what I do...lol! And yes, there is life after MS...but moreover...there is life "during" MS as well...yes?

I also have a parking placard,
and I feel like the parking police when I pull in somewhere and find someone using those designated spots out of convenience...those that do not, and have never qualified to receive said placard! I do not just eyeball them...lol, I will actually remind them how much the ticket is for getting caught doing it...then walk away with my cane...shaking my head...hopefully inserting just a little "shame on you" into their day!
A Good Tip:
Anyone who travels within any Airline...be sure to call ahead and inform the airlines that you, or your accompanied passenger should be registered as "special needs"...this will get you wheeled around the huge airports by a courtesy ailine employee, in addition...they meet you at your destination with a chair, they will book you in so you will not have to wait in line at the gate...and they will allow you to board first...
Just another tid~bit...hope you all have a wonderful day...lol, regardless of how others may try their best to screw it up...

***snickerzzz***

[Shyfemmekat]

Yes...let us get the ball rolling...

First and foremost, Shy...I think that the guidelines you have set forth are wonderful...it is kinda hard to believe that people would be disrespectful, and flame~like in a thread of this subject base...but I have seen it happen...

I have had an issue lately with short term memory...kinda scary when I know I just had something in my hand...lol, and M'Lady find it in the refrigerator later on in the day!

I'll admit, as strong as my will and sense of humor are regarding MS...it took a few days to pull myself out of the hole of depression over this current, and yet so alarming issue...
My vocabulary is vast, and I totally relate to your statement on losing the right words to say...words we use every day...most often for me it is descriptive words that I stumble on...I have such great support of those around me...that at times I will make almost a game show with people, lol...allowing them to assist me in the words I am trying to find...it helps me laugh about it. On the other hand...I love to write, so on those days, it downright pisses me off to lose my database of words...I bytch a little, mumble a lot..lol, but I get through it.
The issue of high heels...lol, I cannot say I can relate directly...lmaooo...but I can relate to fluctuating weight issues, and I hate it when I cannot get into certain clothes that I wanna wear...so I just wait til the weight decides to subside back down a bit...I am a total Phag...lol, when it comes to my clothing...the collection takes up an entire room! Boots have to be very sturdy, I beat the hell out of them somehow...lol, and they must allow me balance. After a long days work, when I sit down for a bit...the hardest part is getting back up...once I do...lol, the hardest part is keeping a straight line...but this usually only occurs in the evenings, thank goodness...

I'll be subscribing to this thread as well as the MS support thread...and be back in and out...

Thanks for the love, Shy...it is a necessary part of a support network...yes?

Waving hello to Daywalker & to the left at Lady Flamezzz!

I re-read what I posted to start with on here. Sometimes I am blunt, I guess. I am just so sick of seeing people share things in threads that were obviously painful for them to discuss at all, and watching them get dogged for sharing them at all! That makes my blood boil. So, I figure if we get that out of the way early we can proceed on in a lovely and harmonious fashion.

OMG, the whole short term memory thing. Wow. Yeah. You know, there was something I was going to post about that...huh...um...what the hell was it...ROFLMAO....

I remember one time looking in the cupboard for the peanut butter to make Thai Peanut Noodles, and I looked and looked, couldn't find it. Turns out later I had put it in the fridge?! I can have something in my hand and set it down and POOF! it disappears.
If I don't write down something it is gone. I hate that. I hate to "give in" and admit that, yeah, lately my memory is like Swiss cheese. But right now that's reality, I guess.

I don't know what I would do without a sense of humor. Some days though, this MS just gets me down. Fear of the future...am I going to be in a wheelchair some day? What then? And even lesser things than that, like a worsening of certain symptoms on a given day. My mind tries to kick in to panic mode, "Ah crap, am I going into another exacerbation?" There are days when I swear all I can see is what I feel I have lost so far. Does that sound depressing? Maybe. But that's real, from the heart.

Lately I have been really exploring spirituality to help me deal with eveything. I have a lot of anxiety and depression, which I do not take meds for. I am hoping to avert that. I take enough crap already. I lean heavily these days on prayer, meditation, and music. If I am feeling anxious I might read Buddha and pop on some Kirk Franklin's "Blessing in the Storm", if I am angry it might be Godsmack's"Whatever" followed by some prayer, LOL. Sometimes I talk with my stone butch and people (bless you D for the phone calls) and I blog and participate here. You all give such great support.

My self-esteem about my femininity was funky so yesterday I put on full makeup & decked out a little, something I have not done for a while. It did make me feel better. Think I'll do a manicure tomorrow and a facial.

LOL, my stone likes clothes, too. She has more than I do, I think, from Harley and Levi's to Adolfo and Bill Blass. Love a well-dressed butch!!!!! I am at the very fluffy end of the spectrum right now, so I have scads of stuff waiting for me to drop the weight. She bought me some cute T-shirts though with sayings at this great on-line place. They had oodles of all kinds of things, and they were cheap, too. They have everything--Christian, animals, biker, cats, and princess stuff (my favorite, LOL). http://www.choiceshirts.com/ I love cute things but they are hard to find in big sizes! Clothes DO make you feel better, I think. And they don't require impeccable balance.

I am so glad you came on here. I just LOVE to read your posts and I think you have so much good stuff to share!

Namaste,
ShyFemmeKat

[Shyfemmekat]

I have a head injury. The results of my head injury has caused me to have seizures, learning disabilities, Dyslexia, ADHD, OCD, color blindness, depression, etc. I take multiple meds each and every day. Without them I would not survive. I also stutter, stammer, slur my words/sentences together, etc.

Self-esteem for me is at a constant low. I struggle with what most take for granite. Take for example, getting dressed and matching. I cannot differenciate blue from black, tan from brown. Another example, is being able to communicate well. I struggle with verbal expression.

Now there are so many different ways to tutor kids with Dyslexia. It burns me up that my parents ignored my failures in elementary school. I realize that they were not able to help me because of my father's mental illness, and my mother being invisible. What jobs are out there that don't require reading? Even as a forklift driver, I have to be able to read and communicate. The ADA protects me. As an employer, most steer clear of those who are disabled or gives them jobs that pay less.

Rosie, my partner of 25 years, knows what it is like to live with someone with limitations. She says that everyday is a challenge, and that she takes one day at a time. Every day we have a routine that keeps us on track. Plus she adds that it doesn't hurt to have wine in the house.

Both Rosie and I know that I will never outgrow my learning disabilities, Dyslexia, color blindness, ADHD, OCD, or stop having seizures. My depression has been with me eversince I can remember. I have peaks and valleys. I believe it goes with having a head injury, and the chemical makeup of my brain.

Peace to all,
Andrew

Good Morning Andrew,

I am so glad you are here! I know what you mean about colors, I have trouble with that to an extent. It is hard for me to tell dark colors from each other---dark brown looks like black, etc. Funny story...when I test drove my truck seven years ago, it was at night. I actually thought it was dark cobalt blue, but it was purple. ROFLMAO, oh well, I love it anyway. If I am not sure about colors I will ask my stone butch for confirmation.

I think a lot of people don't realize the challenges that everyday tasks and skills can hold for people like us. That is one of the reasons I started this thread. Sometimes it is the "simple" stuff that sends me off the deep edge. Things that "normal" people don't even think about: Matching their clothes up so they look nice; being able to stand long enough to get the dishes done; climbing a few stairs; picking things up without dropping them several times.

Depression seems like it always just around the corner. That is another reason I wanted to start this thread. We have to deal with a lot in our daily lives. Some days it is TOUGH. My medication and physical condition really exacerbates my depression which as you and a few others know has been around since I was a little girl due to other factors.

This will be a place of support, where we can be real and be uplifted. That is why I was so blunt in my first post. I don't want a bunch of negativity coming in here, I have enough self-generated negativity on any given day without help. "Don't start no stuff, won't be no stuff."

I found a quote this morning, something that kind of sums up what I want for this thread, for all of us that come here:

“Peace is not something you wish for; It's something you make, Something you do, Something you are, And something you give away.”
Robert Fulghum

Best to you, Rosie and the furchildren.

ShyFemmeKat

[ToughClassyButch]

I have some things to say but not much time to post.......I'll come back to this thread

TCB

[Shyfemmekat]

*subscribing ~ I'll be back to jump in and share.....my POV may be a bit different, but still add to the topic.

Welcome! I often have an minority POV myself, . No, realllllyyy. Look forward to your posts!

ShyFemmeKat

[Shyfemmekat]

I think the most important thing to remember during times of feeling like we don't have a whole lot to offer someone, is that as humans, and humans with disabilities, our senses are turned up for many of us. This often times allows us to have, display, and appreciate compassion, nurthuring, giving, receiving, struggles, the whole ball of wax, whatever it includes, to a greater degree than many others.

In my opinion that's a a WHOLE lot of something to have and to offer others.

~TD~

Hello TD! It is good to see you! Thank you so much for this wonderful post. I struggle with this on so many days. Why would this gorgeous studly stone butch want to be with someone who limps, who some day might be in a scooter? What kind of future do I have to offer her?

I have to remember to live in the now. I can only effect change in the present moment, because yesterday is gone and tomorrow is not here yet.

I am so glad you are here. I have always enjoyed your posts.

ShyFemmeKat

[BlueMoonWolf]

Shy,

I can so relate to what you said in your last post to TD. Matter of fact I said a lot of the same things before I met DC and repeated them often to DC because I thought he had his head in the clouds a bit when it came to me and our relationship. It took him a while to convince me that what my body does does not affect how he loves me. I was really rather convinced that I was going to remain single and not ever have more than a few dates with someone again because of my Dx of lupus. Every day for the past 3 years DC has proved me wrong for thinking that no one could love me and fight this disease with me and some days he fights for me.

Don't give up, just when you are convinced things are going to be one way it turns another.

I do also relate to what you mean about self esteem. When I first started getting sick, I also started to lose my hair. I might be a low matinance high femme but I had a certain amount of pride going on with the hair thing. It took a while before I got my first wig but after I did I got depressed again thinking that I had to wear one. It was actually the aformentioned ex wife and friend that helped me get through that little moment, she and another friend dragged me to a costume shop that had oooodles of wigs and helped me try on about half of their selection making funny comments throughout. Because of that day I got my attitude of "if I have to wear a wig, dammit I am going to have fun with it."

The other minor/major moment was realizing that I needed to use those free use scooters to do our grocery shopping. DC, after about the 100th shopping trip cut short put his foot down and told me I was using one and that I could just adjust. It took me a while but I finally got to the point I am okay with it. What does surprise me it's not the younger people or the people my age that look at me funny when I am buzzing around it's the older people that look down thier nose at me. I have even had one lady, I would guess in her 70's tell me to go put that scooter back for people that need it. I took a few minutes and explained to her what was going on with my body and ended with the nice sarcastic flourish of "So this disease that you don't see I have will probably kill me long before you and I am thinking that if I need to use this scooter I bloody well will." then zipped off tooting the horn. *smirk* sometimes it just pays to be mad.

Anyways, the point I am trying to make is that what you have to offer someone is the same things you had to offer before and more. You have the opportunity to grow together as you face what comes with your MS. To face the challenges and find new ways to cope, to constantly evolve in your relationship knowing that every minute counts good or bad. You are not just your disease, you are a whole person.

BMW

[Shyfemmekat]

I wanted to welcome also:

Whispertome
luvin61
micpfef
ananas
ToughClassy Butch
and BlueMoonWolf

This ball is rollin' now!

ShyFemmeKat

[citybutch]

There's a wonderful book called The Me in the Mirror by Connie Panzarino. Connie has now passed away but she was a stunning, dynamic, political and disabled lesbian. She was a writer, an artist, a therapist, a gardner, a lover, and an activist. I loved (love) her, loved (love) her book, and I think if you havent read it...its a must read....

:: subscribing :: btw....

[micpfef]

I suspect I am not the only one who feels these things. I would like to hear from others who have physical disabilities and feel these things. What is your story? Do you feel less attractive, less "femme/butch/insert your choice of gender term here"? How do you cope? What are your experiences? How do you keep truckin' on?

I have some time so I figured I would post a reply and some thoughts on this. I have been on disability for many years. I have gone through many things during this time. I have had experiences that no one should have to go through and I have learned finally how to put one foot in front of the other and keep on with the battle that my life can be at times.

I have struggled with various health problems since my early 20s. I have had more surgeries than I care to admit. I have had to take medications for depression and mental health issues since my early 20s also. I don't think as an adult there has been a time when I haven't been going to see a doctor for this or for that. In 1996 I fell and severely broke my ankle and lower leg. In 1998 I was told that I was diabetic. In 2000 I had an ovary removed because there was no saving it (the many surgeries in my early 20s were attempts to do this). From 2000 to present I have had multiple surgeries on my ankles to repair damage from repeated falls I have had for various reasons. All culminating in the reality that I now have to wear ankle braces most of the time when I am doing any amount of walking or being on my feet.

I live with chronic pain. Sometimes the diabetes creates health issues that other people can ward off easily. My scars are ugly and my feet are too. I cannot wear heels any more. I struggle to walk and not wobble on a good day because of my ankle instability and balance issues. I rarely can manage the stairs. I have a bag that I carry my medications in because there are too many to put on a shelf and keep track of.

I am 36 years young. I wear my braces so that I won't have to have my ankle fused because of falling and doing further damage. I take my meds religiously because I do not want to go back to where I have been in the past. I have to base my life on having insurance and finding doctors if I relocate to any new area. (Which is an issue coming up because of my acceptance to SFSU in the fall.)

Do I feel less femme - HELL YES. I will alter that to say sometimes and it has gotten better. Do I feel less capable or less than because of my issues - most definately. I have to constantly monitor my body and my mind. I have to find remedies to things that a 36 year old person shouldn't have to worry about. But I do it. And most of the time I can take pride in my life and my abilities.

It is a balance living life with disabilities for me. I find ways to do things that others may not think of. I am a resource queen in many ways because I know the feeling of having no support and no network to find answers to the many problems that so many face. I have my disability placard and my need is for the most part invisible. I have learned how to accept myself and my limitations and do a lot of preventative stuff so that a problem is caught before it gets out of hand.

Medication adjustments, life adjustments, mind and body checks, thinking adjustments, behavior modification, crying, getting angry, feeling sorry for myself (which is an okay thing to do for limited amounts of time and I feel necessary), being tired, resting all are a part of my life.

This has gotten long. I want to say above all I am proud of me and my accomplishments. I am proud of my abilities but I get damn tired sometimes. Shame is a horrid thing to put myself through or anyone through. But in silence it grows and in expression it weakens. I have my voice for the most part and I strive to keep it.

Take care all,
Michele

[Jinx]

I agree with Mic on a lot of things that she has said here. I guess I had a Father that taught me those things. Yeah it's ok to get mad at things that happen and get sad or depressed. Yet to stay there for any length of time does you no good. Ok, so ya have to do things a little differently so what. At least you can still do them, and that in it's self is also saying something about us all. Mic darling you are all femme and I know that and have seen that in you hun. So don't ever feel as though you aren't a femme and don't feel as tho you are anything but that. I have been in numerious car wrecks and had too many things that has totally messed up my back and I fell at work dislocating my right knee. Yeah there are days when I can't plan things or do what I really want to do. Yes it does frustrates me from time to time but I get over it quick tho and keep moving and do what ever I can to keep myself going. I can understand where some people get mad cause I can do this, that, or something else. Yet I have learned that it is really their problem not mine. I am honest and up front about what I can or can not do in a realationship and if they can't handle it oh well it is still their loss. I like Mic don't have that support sustem that some folks have. I have just myself and I take care of my 87 year old Grandmother and now my Mother. So it gets me done a lot but I still keep going. I have often thought about getting a t-shirt that say I am like the energizer bunny I keep going and going. So hang in there folks and I think this is a good place to also vent from time to time as well. Good thread.

[Woodie69]

Shyfemmekat,

You hit the target with your post! You got what I was saying! What I don't understand and most likely never will understand is how ppl can be so mean spirited and nasty towards those of us who are disabled? It is like it is our fault that we are disabled. I also get the numerous eye rolls from ppl when I ask the same question over repeatedly because I don't understand the answer and need someone to explain it to me another way. Or I get the eye roll and labeled a troublemaker if I don't understand something and ask a question. It blows my mind. I have never experienced so many mean spirited ppl before. And it happens both in real time and in cyber.

As for being a FTM and living as a man in today's world as such...most laugh in my face or at me. I am not on testosterone (because testosterone will elevate my blood pressure so much, and having a massive head injury, the dr's don't want to risk any further damage). The damage could = living like a vegetable. So, I do the best I can with passing. I hate my female body, as I always have. I pack and bind. But I would be so much happier (in my mind) having testosterone for the 2ndary male characteristics (for the public & being able to pass more easily), and top surgery.

Top surgery...I had it done in 2004. I got a horrible result, and disfigured chest now. I will have to spend alot more money (cash) in having it reconstructed in a masculine manner, and to cut off the roll of skin that the plastic surgeon created that goes from my back all the way around to my breasts (incl. under my armpits). It will be very painful, and most likely will have to be done in two stages. This surgery took a massive blow to my selfesteem. I was suicidal. I cried in the recovery room after waking up to discover what was done to my body. It was just that bad. Even my adopted family acknowldges how horrible my chest is. I won't go into detail about my nipples, but they are not what they should be at all. I can't wear my boxers or bathing suit and mow the lawn. I still have to wear a t-shirt. The entire purpose of the surgery was screwed up.

I am so glad we can talk openly and honestly on here about the issues that we face. I hope we can stay drama - free. It would be such a pleasure!

Regards,
Andrew

[Georgialdy46]

If I may I would love to post in this thread. I work with individuals with special needs.

I assist them with achieving their goals in a voacational setting, I will say I have done this for sixteen years. Nothing does my heart better then to hear an employer tell someone I am working with that they want them to come to work for them.

I wont say its a piece of cake because like anything else it has its moments, but to see a glitter of happiness fall in their eyes is worth any trials I might endure,

I used to work with a Supported Living Program as well and that in itself was enduring.

With this I can say I never let anyone talk mean spirited about anyone else less fortunate then us.

I would also like to say that I think all of us have a special need of some sort, its just that some are more profound then others, but that doesnt make them or their lives less important, So I hope that have lifted someone in here tonight because everyone has a gift and I know that all gifts are special. Dont let the ignorance of people get you down they arent worth it,

[Woodie69]

My hat is off to you Georgialdy46. Your job is not easy, but the rewards are rich indeed.

With kind regards,
Andrew

[Shyfemmekat]

Hello,

So many good posts in the last 24 hours! I hear you all.

Tired is the name of the game for me, tired and crotchety the last couple days. I have a testimonial taping to go to Thursday for the Help Is Here Express tour next month sponsored by the Partnership for Prescription Assistance. I'll be wearing my pride hat pin again. Got to represent!
If you have no insurance and you need help with your meds check it out. Here's the link.
Partnership for Prescription Assistance:
http:////www.pparx.org/Intro.php
I know it's going to be a long hour or so, but worth it. I am glad to be able to help where I can since they have done so much for me. The shebang downtown for Rx for Indiana wore me out in about two hours.

I think there are often assumptions made by those around us that everyone has a terrific family support network or something. I got that kind of thing when I applied for assistance a couple of times. That and being talked down to. The one that really got me was about two weeks ago: (In my best Church Lady syrupy voice),"The goal of our program is to make you self-sufficient. Does someone know another word for self-sufficient?" I was huddled in the hard little chair on my shot day, which meant I still had chills, aches and a fever as well as fractionated sleep the night before. When my mouth sprang open of its own volition I did Thich Nhat Hahn's "Flower Fresh" exercise to defer my instant desire to make a snappy comeback. Just because I come to you for assistance doesn't mean that my parents chose the brain-optional model when I was conceived, m'kay? Not all of us have a big loving family eager to help out. Both my parents are dead, I have no brothers and sisters and what family that is alive is drama happy & not GLBTQ friendly. I am lucky that my ex-stepmother's family has been there for me sometimes although they all live out of state. I am also blessed with a handful of good people and a partner who realizes that I am a basically good person and think she is marvelous, even though my curly head spins around backwards at times. (J/K, I don't even like pea soup...)

You are right, micpfef, you do have to cobble together your own resources. The Internet is a huge help for me. I am lucky enough to have a great neurologist who does all she can to help out, as well as the head of one of my charity programs. I have been known to hug both of them and send thank you cards. Both are remarkable women who put it out there to help others, much as you do, Georgialdy46. Know that on the crappiest day you are appreciated by some client.

Woodie, that kind of disrespect and abuse sucks. I knew someone MTF who had something similar happen at a hospital here. I also knew another MTF who was treated like she was a curious kind of bug when she went to the hospital with a respiratory infection. I pity those who use their positions for ill, because what goes around comes around....oh my. You are a very special person, and I am proud to know you.

BMW, good to hear from you. I had a vertigo moment this week and all I could think of was your drunken monkey comment. I started laughing, which I needed.

I am checking into getting a rolling walker sometime in the future. The stone butch said if I ever have to get a scooter we'll have to get a purple chopper one and put spinners on it. ROLFMAO. Have you seen those chopper style scooters? Here's a cute one I saw:
No Boundaries:
http://www.noboundaries.com It is called the LA Chopper...http://www.noboundaries.tv/chop2.htm

ShyFemmeKat

[MountainGirl]

Shy, thank you so much for this thread. I have sat here reading this and felt like maybe there ARE others out there who understand.

I became disabled on July 23, 2003 when a drunk driver ran down the bicycle cab I was in at Gay Pride. I suffered massive head injuries and the right side of my skull is now mostly titanium. They shaved my head. My long hair...GONE. I don't remember that day..in fact long term amnesia is a big problem for me.

I am finally comfortable within my own disability (different-ability). Please know that it was a long journey to comfort. I suffer chronic pain, headaches, cognitive disability, short and long term memory issues, and my personality changed a lot. I can no longer taste or smell. Imagine losing two of your five senses...I have seizures. The seizures are the most difficult issue for me. I will never get used to ending up on the floor in a supermarket with people and paramedics staring at me...me not knowing why. I take a lot of medicine. My life is lived with compensation strategies now...ways to remember to take the medicine, to eat (I forget)...the list goes on. My saving grace is the brain injury rehabilitation program that I attend. They get me.

It is so hard when you present "fine" on the outside. People tend to minimize what I am going through. People get mad at me for not telling them things that happened during the day when I truly just forgot said things even happened. People think that a Head Injury is like a broken arm or leg...that it can heal. Head Injuries don't heal per se..you learn to realign your life around them. I am not the same person I was the day before my accident, she is gone forever.

I tire of people telling me how LUCKY I am. Somedays I just don't feel so lucky, I feel like shit and I should be able to own that. I am grateful to be alive, but refuse to sugarcoat it by saying that I am ok. I am not.

On the other side of the coin, things happen for a reason. This disability has been a gift of sorts, and the way I live my life is better now. No more workaholic. More time with my kids....a time for me to get to know and love myself all over again. I struggled deeply with self esteem issues and see a therapist every week. I now know that I can offer a lot to a partner, my family, my friends...and that what I am offering is just different. Even better in some ways. I also take solace in the fact that whomever I end up with will truly have to love me for ME...not just the packaging.

Often when I park in Handicapped I get the "Look". Several times at Starbucks men have said to me.."You're too hot to be disabled". WTF does that mean? I smile sweetly and ask them if they would like to stand in the parking lot and let me run them over at 50mph..that usually takes care of that.

Ok, I am rambling now which is another quality I've acquired since my head got bumped. Thank you everyone for sharing...

[TxHarleyBoi]

Shy, thank you so much for this thread. I have sat here reading this and felt like maybe there ARE others out there who understand.

I became disabled on July 23, 2003 when a drunk driver ran down the bicycle cab I was in at Gay Pride. I suffered massive head injuries and the right side of my skull is now mostly titanium. They shaved my head. My long hair...GONE. I don't remember that day..in fact long term amnesia is a big problem for me.

I am finally comfortable within my own disability (different-ability). Please know that it was a long journey to comfort. I suffer chronic pain, headaches, cognitive disability, short and long term memory issues, and my personality changed a lot. I can no longer taste or smell. Imagine losing two of your five senses...I have seizures. The seizures are the most difficult issue for me. I will never get used to ending up on the floor in a supermarket with people and paramedics staring at me...me not knowing why. I take a lot of medicine. My life is lived with compensation strategies now...ways to remember to take the medicine, to eat (I forget)...the list goes on. My saving grace is the brain injury rehabilitation program that I attend. They get me.

It is so hard when you present "fine" on the outside. People tend to minimize what I am going through. People get mad at me for not telling them things that happened during the day when I truly just forgot said things even happened. People think that a Head Injury is like a broken arm or leg...that it can heal. Head Injuries don't heal per se..you learn to realign your life around them. I am not the same person I was the day before my accident, she is gone forever.

I tire of people telling me how LUCKY I am. Somedays I just don't feel so lucky, I feel like shit and I should be able to own that. I am grateful to be alive, but refuse to sugarcoat it by saying that I am ok. I am not.

On the other side of the coin, things happen for a reason. This disability has been a gift of sorts, and the way I live my life is better now. No more workaholic. More time with my kids....a time for me to get to know and love myself all over again. I struggled deeply with self esteem issues and see a therapist every week. I now know that I can offer a lot to a partner, my family, my friends...and that what I am offering is just different. Even better in some ways. I also take solace in the fact that whomever I end up with will truly have to love me for ME...not just the packaging.

Often when I park in Handicapped I get the "Look". Several times at Starbucks men have said to me.."You're too hot to be disabled". WTF does that mean? I smile sweetly and ask them if they would like to stand in the parking lot and let me run them over at 50mph..that usually takes care of that.

Ok, I am rambling now which is another quality I've acquired since my head got bumped. Thank you everyone for sharing...

Hello there MountainGirl - I was wondering if I'd see you here. Thank you for sharing this story with everyone. I remember talking to Laura and she was so deeply concerned when you were hospitalized - she worried about you all of the time. You never have to worry about people caring for you for the person that you are - Laura did, I do and I am sure the folks in here welcome you with open arms. Thanks again!
THB

[Woodie69]

Shyfemmekat,

I looked up the website for noboundaries.tv/chop2 = awlsome! I cannot believe that thing will climb up 5 inch curbs and travels at speeds up to 10 mph...omg. If you get that you will notice that while driving it, and you drive by someone wearing cologne or perfume, the scent lingers in the air flow from them. I noticed this when driving my forklift truck. I love it.

Also, glad you thought of the drunken monkey comment (hehehe), and it put a smile on your face.

The family topic...I hate talking about mine. My bio-family is non-friendly towards anyone who isn't straight, including myself. They hate me (I hate the word hate, but it is the only word that comes close to describing how I am treated by them). I guess I scare them. As I have aged over the years, I don't see any of my bio-siblings coming to help me out if I get sick with a massive disease or needing rehab from surgery. I see myself going into a state assisted living facility (I don't have the income to afford a private assist. living facility). My bio-parents are close to 80 yo. They are not able to help me what so ever, and I don't want their help. They have "divorced" themselves from me because of who and what I am (so we have no relationship). Life is very different for me than most because of that. What I cannot stand are the ppl who brag about how close they are with their family, and what they do as a family, etc. It makes me wonder why they are even online anyway.

As for my family and my disabilities - my bio-family pretends I am fully functional. It is a lie that I don't even want to go into. My parents single handedly screwed up my healthcare since childbirth. I am the one who had to take charge of everything. But that is about par for them.

MountainGirl,

I am glad you found this thread! Welcome. There is no drama here - I promise. And everyone is here to support each other as best we can.

[Shyfemmekat]

Shy, thank you so much for this thread. I have sat here reading this and felt like maybe there ARE others out there who understand.

Yepper doodle! There are a lot of us who do, I think.

I became disabled on July 23, 2003 when a drunk driver ran down the bicycle cab I was in at Gay Pride. I suffered massive head injuries and the right side of my skull is now mostly titanium. They shaved my head. My long hair...GONE. I don't remember that day..in fact long term amnesia is a big problem for me.

That sucks! I have long hair, too. That would be a blow to my femininity. I am sorry you had to experience that.

I am finally comfortable within my own disability (different-ability). Please know that it was a long journey to comfort. I suffer chronic pain, headaches, cognitive disability, short and long term memory issues, and my personality changed a lot. I can no longer taste or smell. Imagine losing two of your five senses...I have seizures. The seizures are the most difficult issue for me. I will never get used to ending up on the floor in a supermarket with people and paramedics staring at me...me not knowing why. I take a lot of medicine. My life is lived with compensation strategies now...ways to remember to take the medicine, to eat (I forget)...the list goes on. My saving grace is the brain injury rehabilitation program that I attend. They get me.

I admire your survivor spirit. That's kind of what I wanted to tap into with other folks. That is what I meant by, "Life As It Is Now, Coming to Terms, Rising Above". I am so glad you have posted. I know for myself it is so important to have that exchange of experience, strength and hope. Welcome, I am looking forward to hearing more from you!

It is so hard when you present "fine" on the outside. People tend to minimize what I am going through. People get mad at me for not telling them things that happened during the day when I truly just forgot said things even happened. People think that a Head Injury is like a broken arm or leg...that it can heal. Head Injuries don't heal per se..you learn to realign your life around them. I am not the same person I was the day before my accident, she is gone forever.

While I have not had a head injury, I know what you mean about not being the same person before the illness. I think at times I am still mourning that, trying to come to terms with all that this illness, etc., entails. So many things have changed and are changing...and people do seem to want to minimize the feelings and experiences of others, especially if it is something that makes them feel uncomfortable or they don't know how to respond. I do have a slight limp but many of my issues are not readily visible, so they are often not acknowledged or dismissed.

I tire of people telling me how LUCKY I am. Somedays I just don't feel so lucky, I feel like shit and I should be able to own that. I am grateful to be alive, but refuse to sugarcoat it by saying that I am ok. I am not.

I agree. We have to adapt and absorb at our own pace, not necessarily the pace others would choose for us. That is also why I mentioned in the beginning that judicious ranting is allowed. Every day is NOT going to be a totally bitchin' day. That's just our reality, I think.

On the other side of the coin, things happen for a reason. This disability has been a gift of sorts, and the way I live my life is better now. No more workaholic. More time with my kids....a time for me to get to know and love myself all over again.

Yes, I think so , too. Merely because I do not see the whole picture does not mean there is not a Higher plan. I do not believe in coincidence. I have been digging deeply into spirituality, mine being a mix of Unity-type Christianity, Native American and more recently, Buddhism. Today I am claiming this as my thought for today, from Jeremiah 29:11-13, New Living Translation:

"For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me in earnest, you will find me when you seek me."

I am trying to develop ways to deal with my frustration and anger. I have recently begun meditating as well, and I do some kind of prayer and other reading (most often listening on CD). I am trying to seek out and develop ways of coping that are healthy ways. Right now it is incredibly stressful, dealing with all this and being so broke, which I hope will be somewhat allayed by a positive response on my application for disability.


I struggled deeply with self esteem issues and see a therapist every week. I now know that I can offer a lot to a partner, my family, my friends...and that what I am offering is just different. Even better in some ways. I also take solace in the fact that whomever I end up with will truly have to love me for ME...not just the packaging.

This is the part I really struggle with. This is the part that really kicks my butt. I would love to hear more about this from everyone.

Often when I park in Handicapped I get the "Look". Several times at Starbucks men have said to me.."You're too hot to be disabled". WTF does that mean? I smile sweetly and ask them if they would like to stand in the parking lot and let me run them over at 50mph..that usually takes care of that.

OMG, I just died laughing when I read this. You go, girl. So I guess if you looked like a troll that would make it all right for them?! It kind of reminds of the people who told me, "But you don't look queer, you're so pretty, I know you could find a man." So, if I was hideous you wouldn't be over here saying such stupid things? WTF, indeed. Sometimes the right man for the job is a woman. A BIG stone butch one, at that. That's the kind of dumb thing people say that has been known to make me ask them in a serious tone, "Did you fart?" And when they look puzzled and say, "No, why?", I smile the most dazzling smile and say, "Because I thought I heard some a---ole talking s#$t." M'kay, rant over.

Ok, I am rambling now which is another quality I've acquired since my head got bumped. Thank you everyone for sharing...

Thank you so much for sharing with us, I am glad you are here!

ShyFemmeKat

[TxHarleyBoi]

Shy and MountainGirl - you both have posted beautifully and I thank you for sharing. It is the most incomprehensive situation for me, as a stone butch, raised like a son, taught 'you can do anything you put your mind to', that now, the 'me' after diagnosis, isn't that same person. I am still bull-headed and think I can still do things, yet some days, hell, most days, I don't win the battles. It isn't about ego either - it is about personal satisfaction, happiness - when I feel limited I am unhappy. When I feel weak or controlled by someone or something other than myself, I rebel. So many similarities, so many different facets... by the way, I love how you both handled the idiots!
Thank you ladies!

[Georgialdy46]

Shy and MountainGirl - you both have posted beautifully and I thank you for sharing. It is the most incomprehensive situation for me, as a stone butch, raised like a son, taught 'you can do anything you put your mind to', that now, the 'me' after diagnosis, isn't that same person. I am still bull-headed and think I can still do things, yet some days, hell, most days, I don't win the battles. It isn't about ego either - it is about personal satisfaction, happiness - when I feel limited I am unhappy. When I feel weak or controlled by someone or something other than myself, I rebel. So many similarities, so many different facets... by the way, I love how you both handled the idiots!
Thank you ladies!

I posted in here a couple of nights ago. As stated before I work with individuals with special needs. My respect for the people I work with in assisting is much more then I could ever even talk about. I respect these people because they try so hard to show the rest of the world that they are in fact just like everyone else. Life can be what you make of it. They do the best they can with what they have. As stated in my previous post all of us at some range have a disability. Some are able to detect by the eye. Some are able to detect by the ear. But to me people that think they are superior then another or have the need to constantly praise themselves are far more inferior then they care to admit. If anyone out there thinks they are better then another because they are more capable in some areas then another have a lot to learn. We are all on this earth for a short time and to make the best of our lives as well as other's lives while we are here. So my hat's are off to all people that have special needs and move past them with the help of others. All people are created equally and all people are special. Some are just more special then others. If you are in here reading this post please take time realize we are all here for a reason and no one is better then the other. Like the song say's "I hope you dance" that doesnt nessaccarly mean physically dance but all people that dance are happy usually. If this post can make anyone smile and feel happy then I played the music for you to dancew to.

[TxHarleyBoi]

I posted in here a couple of nights ago. As stated before I work with individuals with special needs. My respect for the people I work with in assisting is much more then I could ever even talk about. I respect these people because they try so hard to show the rest of the world that they are in fact just like everyone else. Life can be what you make of it. They do the best they can with what they have. As stated in my previous post all of us at some range have a disability. Some are able to detect by the eye. Some are able to detect by the ear. But to me people that think they are superior then another or have the need to constantly praise themselves are far more inferior then they care to admit. If anyone out there thinks they are better then another because they are more capable in some areas then another have a lot to learn. We are all on this earth for a short time and to make the best of our lives as well as other's lives while we are here. So my hat's are off to all people that have special needs and move past them with the help of others. All people are created equally and all people are special. Some are just more special then others. If you are in here reading this post please take time realize we are all here for a reason and no one is better then the other. Like the song say's "I hope you dance" that doesnt nessaccarly mean physically dance but all people that dance are happy usually. If this post can make anyone smile and feel happy then I played the music for you to dancew to.

Doin the best two-step one can do alone... (I haven't taught my dog that step... ) Thanks Georgia

[Georgialdy46]

Doin the best two-step one can do alone... (I haven't taught my dog that step... ) Thanks Georgia

Can you teach my dog please they really need to learn

[DAYWALKER]

Georgialdy46...Thank You for the music...lol, I so love to dance! Last night my legs went into an awful state of spasm and charley~horses, compounded with severe cramping in the area of the tops of the ankle at the bend. One of my first thoughts is always..."....how long will this last and will this episode cause any lingering effects in my legs..."? Because.......I love to dance! I cannot imagine not being able to do so. Having a hell of a time walking today, but I did manage to make it to work...lol! I always tell my crew, there is no way I am gonna leave them alone for a day to screw off...lolol, and lose me money! We all get along great, and they do try to make me get up outta my chair as little as possible on those rare days like today. Relapsing~remitting...pft...lol, I know the pain will subside, and people do not come equipped with "fast forward" buttons...lol, but I believe I will just sit here and whine with a smile...lol, 'cause I can...and know that it will get better...yes?

Thanks for listening everyone...!

[TxHarleyBoi]

Can you teach my dog please they really need to learn

Canine two-steppin' lessons at my cabana - bring milkbones!

[MountainGirl]

I love this thread...

Woodie, you are a kindred soul to me and I value your posts and experiences with having a head injury. I love that you *get* it and you've made me feel so welcome here on this site.

Georgialdy, thank you for you kind words.

Tx... thank you for sharing. You post about not being in control and rebeling resonated with me. I can so relate to the frustration of limitations getting in the way.

Shy...wow. YOU are amazing. I am going to take the time to respond to one point in particular from your post because it is what you said you wanted to hear more about and that is the self esteem issue.

Let me begin by saying that you are doing a fabulous thing by exploring Sprituality. This will help you tremendously as you travel this path. For ME, it has been a grieving process, and I have had to mourn my 'old' self and introduce myself to my 'new' self. It has been such a hard process in that letting go of something and accepting something new and different at the same time is NOT an easy process. For a long time I was not very honest with myself about my life prior to my accident...the rose colored lenses were on and I viewed my lost life as this perfect place full of sunshine and lollipops and I wanted it BACK.

I am still learning new things about my disability which means that the journey to self esteem is an ever evolving journey. It wasn't until this past January that I finally truly believed in my heart that I am an individual worthy of giving and receiving love. I don't know about any of you, but I have a very hard time going outside of my own space...I feel safe in MY home, around MY things, and having a head injury makes it extremely difficult for me to break routine. So I forced myself. I packed up my things and spent my entire break travelling. In Maui I got my Mojo back. I felt pretty again. I surrounded myself with out of norm situations and guess what? People still liked me. For me. I came home at peace with a sense of incredible calm.

I hope this makes sense. I spent (and still fall back into it once a day at least) a lot of time being really hard on myself. I think I'm harder on myself than the rest of the world is really. Every time I forget something, I get so mad. When a setback occurs I used to just and feel hopeless, sure that it was never going to get better, only worse. When the people I love (ESPECIALLY family) lose patience with me I would get devastated. My self esteem was shattered in on huge sweep when the car hit me and continued to obtain fissures and cracks daily when my disability got in the way of what I considered my perfect life. Nobody that hasn't walked this path can truly understand how insidious the process of losing yourself is...but it can be maddening.

Today, I am spackling those cracks and fissures one at a time. I have affirmations taped to my mirror, I say them outloud to myself every day. I know that NO MATTER WHAT has happened to my body...the essence of me is still me. My heart is still my heart, full of love, compassion, kindness and empathy. I AM worthy of good things, or why would I be here? If I wasn't, wouldn't I have died that day?

Shy, no matter what is going on that day...how shitty you feel...pick out one thing about yourself that you really like. You can always find one thing. Even if its just the fact that you woke up alive...its a plus

And instead of crying over the "moments', I now laugh. Not all the time, that wouldn't be honest. But when I can't find words...(you know what I mean, I really want to say something and I know what it is but the word won't get from my brain to my mouth..) I just make a word up and laugh about it with everyone. I also am very open with everyone about my disability. It is WHO I AM. I am not ashamed. When people try to be "kind" and say things like "Oh, I forget things all the time. Just this morning I couldn't find my keys" I kindly inform them that their situation is nothing like mine. Please don't compare.

I hope this helps.