Differently Abled (fly your freak flag high)

[Corkey]

I have a question please? I am differently abled, physically, not thru a brain trauma, is this thread only for those of the community who have brain traumas? I ask cause I don't want to step on anyones space.

[SuperFemme]

Originally Posted by Corkey

I have a question please? I am differently abled, physically, not thru a brain trauma, is this thread only for those of the community who have brain traumas? I ask cause I don't want to step on anyones space.

No Corkey you belong here. When I speak from the Me place it ends up being in relation to brain trauma because that is part of my differently-abledness.

My physical limitations come into play as well because when I am in pain, or on chemo it affects me and how I engage with the world around me.

My goal is to make sure that we all (no matter the nature of the different-ablility) are heard and part of a community that is inclusive to us all. That is a new undertaking in the online community IMO.

So welcome to the thread. Share. About anything you want to. This is a safe place where you (general you) can laugh, cry, and share about navigating planet earth and the butchfemmeplanet while being different.

[Corkey]

Thank you, for the inclusion I appreciate that.
I still find it ironic that abled bodied people see my cane and not the person, and they park in disabled parking and run into the store, while I'm left looking for the next closest parking spot.
Chaps my ass to no end.
The newest peeve is when I'm using the stores mobile chair, and cart pushers think it's easier for me to back up than it is for them to stop, wait and then go around me. Those chairs don't stop on a dime ya' know!
Thanks for a place to rant....end rant.

[friskyfemme]

I just attended a Seminar last week on dyslexia. Even though I have lived wth this for years there really hasn't been too much hepful info on it. I was pleased to find out that at least now it can be detected as early as 1 yr old.
Also there are teaching methods developed to help us. Of course though it's expensive and could take years especially for adults to erase all the trauma of traditional education.

But, I am up for it. Actually, I am seriously considering becoming a tudor and perhaps opening a school for persons with dyslexia.

Facts a 30yr government funded research revealed: 1) 20% of the population have some form of dyslexia frm mild to profound. Higher than Autism rates.
2) it is genetic with 50% chance of passingit on to offspring. 3) right and left halves of the brain are equal size(person w/o rigt half is 10% smaller). 4) person w/dyslexia are great artists , architects , social workers ,techies .

Anyway it helped me to know that I am not among a small group. I hope this helps some others as well.

Oh also...I learned I am also ADD. I need to spend more time learning about this.

[Daywalker]

**Flying Freak Flag Hella High**


I'm currently medicating, but I shall come back n read n participate later.

[SuperFemme]

I'd like to have a discussion about invisible disablities.

This thought is spawned by the Food Stamp thread, and the fact that so many people look down upon and judge those who are seemingly "capable and able to work".

Sigh.

My brain injury is invisible.
My leukemia is invisible.

For the first five years after my accident I was so ANGRY because I wanted to work. I cannot tell you how next to impossible it is for me to track things, multi-task, let alone the short term memory issues that leave me looking quite the fool because I had no idea that I had that conversation with somebody an hour ago.

Then along comes cancer, and there are days when my body is a living hell.

Today somewhere I read cancer = prvilige and I had to literally turn off my computer I was so hurt.

So those of you with Aspergers, ADD, Dyslexia, MS, Depression, Cancer, and the hundred other invisible disabilites...do you ever get fucking tired of having to quantify yourself to people?

Does it hurt you that some think you are deserving of assistance whilst others are not?

I really am just a normal girl, with some quirks that make my abilities different.

I don't want pity. I want understanding, which IMHO is so much different. I feel so isolated and misunderstood sometimes. In my perfect world people will judge me for what is on the inside of my beautiful self. The same as the rest of you guys.

I think this is a really important conversation to have.

FriskyFemme, I cannot even begin to imagine the frustration of going through life with dyslexia. It feels so unfair to me that you are just now finding the tools you need. I applaud you for wanting to become a tutor, and I hope you can be a mentor to others on this site who share in your dyslexia. Welcome to the thread, I'm so glad you are hear.

Sometime, if you don't mind, would you share what it's been like for you? How you navigate through a world of forms, books, readings etc? I want to be educated, and while I know I can go read a book (which I am willing to do) a personal journey to me is far more educational. I'd like to know what I as a human being can do to help out.

[Lady Jewel]

Please forgive the long post....So I just read through this thread for the first time. With some trepidation, I will share what makes me "differently-abled". Its funny that I found this thread today as my daughter and I were having a conversation about me and my health today and how it has affected AND helped us. I'm crying as I share this story because it really is a story of triumph but also some sadness for me.

Ariel (My 16 year old daughter. My only child. My hope for the future and reason for living) and I were talking to today and I started telling her stories about herself from when she was in my belly to the present. We laughed. I cried, as I am now in the retelling of this encounter today. I must digress for a moment so that when I share what I said to Ariel, will make sense. My life as I know it, pretty much went to hell when I was 39. I am now 48. I was partnered. I had a job I loved. Was at the top of my game and never thought it would end. It started out with blinding headaches and neck pain. I went and saw everyone until the ENT told me it was in my jaw and needed to go see an Oral Surgeon who was also an MD. This Doctor, my hero, was known as the best Oral Surgeon in Vegas. Did all the diagnostic tests, Yada yada. Came back that the disc in my jaw had all but turned to powder due to arthritis and degenerative disc disease. Soooo..I went on leave from work. Went to the hospital and had reconstructive jaw surgery. The blinding pain I had was gone almost instantly. Went for the PT. Worked my ass off and was able to go back to work shortly afterwards. In subsequent months, I started having shooting pain down my arm into my hands. I thought it was Carpal Tunnel and started wearing a brace. A month goes by and the pain gets worse. So one night I spent four hours bent over Ariels Girl Scout sash sewing badges onto it. Well that must have been the straw that broke the camels back. Woke up the next morning and had pain like my arms has gasoline poured on them and set on fire. Went to my PCP and he sent me to have MRIs of every body part. Turns out that 3/4 of my cervical spine had NO discs left between the vertebrae at all so I was basically bone on bone. Had to go thru a million (Well NOT that many, but certainly felt like it) painful diagnostic tests before surgery could be done. Well, nothing got better, only worse. I ended up having 3/4 of my cervical spine reconstructed. Woke up from surgery with NO pain. Yayyy!!!. Did the PT so I could regain the mobility in my neck. About five months later, the pain began again in earnest. Back to the orthopedist. Well, more bone spurs grew back and they had to re-do the entire surgery all over again. So Another surgery and another 5 days in the hospital, but this time I ended up in the ICU. Oh I forgot to mention between neck surgeries I travelled from Vegas to the University of Iowa, which has the number one orhtopedics program in the country , for a second opinion with an Orthopedist and a Rheumatologist. Diagnosis: Degenerative disc disease in my C-T-L-S spine. Degenerative arthritis. Some type of inflammatory autoimmune disease. Oh and one of the worst cases of Fibromyalgia the Rheumatologist has ever seen. Soooo...Got through the second surgery, About 7 months later, the pain in my lower back became unbearable, and yup, you guessed it...another two surgeries on my lower back. Came out of that in a wheelchair with the prognosis that I would always need that powerchair. I called bullshit on that. Yeah I needed for a while, but fought my way out of that one. One of the wonderful legacys that the surgery left me, was the Vascualr surgeon damaged the lymp nodes in my abdomen which gave me Bi-lateral lower limb lymphedema. My legs were so filled with fluid that the girth was 27 inches around my ankles. So in my handy dandy wheelchair that I was still in, I took the Paratransit bus to the lymphedema clinic three times a week. In the middle o very hot Las Vegas weather. part of the treatment consisted of three layers of special bandages from my thigh to my toes. Real nice in 117 degree weather. Finally got the lymphedema under control. Yayy!! LOL. Decided Ariel and I needed girls day out. Took my powerchair and Ariel on the Paratransit to one of the casinos that had a movie theater. We had brunch. Went and saw a few movies and had a great time. Paratransit come to get us. Loads me and my chair onto the bus and proceeds to speed throu the parking lot at 45 mph. Flys over a speedbump, he had strapped the wheelchair I was sitting in wrong and I flipped backwards. Hurting my neck and back. Spent about a year in treatment trying to get over the injuries I sustained. And believe it or not, I smiled through all this and really did a good job moving on. Fast forward two years, my partner of almost nine years calls it quits. Same day as I was diagnosed with steroid induced diabetes. Soooo...she went her way. Ariel and I got a new place. My new life was set to begin. One week to the day we moved, I decided to go meet Ariel at the bus stop because my car needed a new alternator and was not going to be fixed till that night. As I was walking to get her, an old man in a truck wayyyy tooo big for him, ran me over. Backed up and hit me again. I still dont get that. Poor Ariel was passing by on the bus and saw her mama get hit. It was awful. I was under the truck waiting for the ambulance and I could hear Ariel screaming. Was taken to the hospital. Basically hurt my arm, shoulder, lower back and neck. Yet another thing to get through. Which I did. The massage therapist I was sent to after the accident to help with spasms used to tell people that were in the waiting room, "Look at this woman. She has been through more in 9 years than 10 people should go through in a lifetime. She always has a kind word, a smile and hug for me and anyone she feels needs it". So I always felt that maybe that was the Universal reason I needed to go through all this stuff. To make people see that even in sadness and pain, that there can be happiness.
Ok, so back to the conversation Ariel and I were having today.....We were talking about how lucky she was that she wasnt a latchkey kid. That she always had me home when she needed me. How I was so available to her. And I reminded her that the only reason that I was able to do that was because of all the surgeries and health issues. She asked me if I could change that, not have all this stuff, would I. I thought about it for all of two seconds and replied, "Honey, I wouldnt trade ALL this pain and aggravation EVER. It was through all of this crap that I was able to be here for you. Most kids will never know what it is like to have a parent around 24/7". She came over, hugged me tightly. "Mama, I love you so much".
So how lucky was I to have been blessed with ALLLLL this stuff? Ive never regretted it for a moment.

With all my love and support to the rest of you who fly your differently-abled freak flags.

[PearlsNLace]

A funny moment

So at a super bowl party there was this band playing, called "the who"
I didnt know who they were.
I also learned this week that the Rolling Stones are a band that is not related to the magazine in anyway, but I dont know what music they play.

This is only funny because apperantly these bands are quite big. I know this by the look of incredulity on my new boyfriends face as he discovers to what depth my hearing loss has allowed me to grow up in a media culture closet.

It was painfully emberrassing not all that long ago to learn that I was "supposed to know" who the Beatles were. I have at least an inkling now.

Its not painfully emberrassing anymore. The difference is that Im held in love and understanding. Patience and appreciation. And my experiences, being different, are valued. It gets to be funny. I get to look forward to a later exposure to new things now that there is you tube lyrics and special headphones that help drowned out excess sound and highlight voices. Movies and music both are something Im slowly exploring.

Ive lived 35 years without it though, and its ok that Im not rushing to "fix" my lack of understanding. WOW.

It makes a difference. I get to enjoy the humor of it all because im not veiwed as broken. I hope I remember that, as I take care of my patients every day. Cause this acceptance of me as whole- wow what a gift. I want to give that gift to others.

[SuperFemme]

Thank you so much for this amazing post. You are a superhero Miss Jewel.
I have to admit that a few years after my accident I was able to look at it as a gift. I went from being a single momma working 80+ hours a week to being at home with the kids all the time.

My anger left my body and I focused on the blessings that came with it.

For those of us who are able to do that? To pull ourselves out of the "Why me" mindset I find that we have a much better chance at living a differently abled life infused with genuine happiness. That is key to survival and every day living.

So just. Thanks. Ariel is a very lucky girl indeed to have you for a Momma.

Originally Posted by Lady Jewel

Please foirgivSo I just read through this thread for the first time. With some trepidation, I will share what makes me "differently-abled". Its funny that I found this thread today as my daughter and I were having a conversation about me and my health today and how it has affected AND helped us. I'm crying as I share this story because it really is a story of triumph but also some sadness for me.

Ariel (My 16 year old daughter. My only child. My hope for the future and reason for living) and I were talking to today and I started telling her stories about herself from when she was in my belly to the present. We laughed. I cried, as I am now in the retelling of this encounter today. I must digress for a moment so that when I share what I said to Ariel, will make sense. My life as I know it, pretty much went to hell when I was 39. I am now 48. I was partnered. I had a job I loved. Was at the top of my game and never thought it would end. It started out with blinding headaches and neck pain. I went and saw everyone until the ENT told me it was in my jaw and needed to go see an Oral Surgeon who was also an MD. This Doctor, my hero, was known as the best Oral Surgeon in Vegas. Did all the diagnostic tests, Yada yada. Came back that the disc in my jaw had all but turned to powder due to arthritis and degenerative disc disease. Soooo..I went on leave from work. Went to the hospital and had reconstructive jaw surgery. The blinding pain I had was gone almost instantly. Went for the PT. Worked my ass off and was able to go back to work shortly afterwards. In subsequent months, I started having shooting pain down my arm into my hands. I thought it was Carpal Tunnel and started wearing a brace. A month goes by and the pain gets worse. So one night I spent four hours bent over Ariels Girl Scout sash sewing badges onto it. Well that must have been the straw that broke the camels back. Woke up the next morning and had pain like my arms has gasoline poured on them and set on fire. Went to my PCP and he sent me to have MRIs of every body part. Turns out that 3/4 of my cervical spine had NO discs left between the vertebrae at all so I was basically bone on bone. Had to go thru a million (Well NOT that many, but certainly felt like it) painful diagnostic tests before surgery could be done. Well, nothing got better, only worse. I ended up having 3/4 of my cervical spine reconstructed. Woke up from surgery with NO pain. Yayyy!!!. Did the PT so I could regain the mobility in my neck. About five months later, the pain began again in earnest. Back to the orthopedist. Well, more bone spurs grew back and they had to re-do the entire surgery all over again. So Another surgery and another 5 days in the hospital, but this time I ended up in the ICU. Oh I forgot to mention between neck surgeries I travelled from Vegas to the University of Iowa, which has the number one orhtopedics program in the country , for a second opinion with an Orthopedist and a Rheumatologist. Diagnosis: Degenerative disc disease in my C-T-L-S spine. Degenerative arthritis. Some type of inflammatory autoimmune disease. Oh and one of the worst cases of Fibromyalgia the Rheumatologist has ever seen. Soooo...Got through the second surgery, About 7 months later, the pain in my lower back became unbearable, and yup, you guessed it...another two surgeries on my lower back. Came out of that in a wheelchair with the prognosis that I would always need that powerchair. I called bullshit on that. Yeah I needed for a while, but fought my way out of that one. One of the wonderful legacys that the surgery left me, was the Vascualr surgeon damaged the lymp nodes in my abdomen which gave me Bi-lateral lower limb lymphedema. My legs were so filled with fluid that the girth was 27 inches around my ankles. So in my handy dandy wheelchair that I was still in, I took the Paratransit bus to the lymphedema clinic three times a week. In the middle o very hot Las Vegas weather. part of the treatment consisted of three layers of special bandages from my thigh to my toes. Real nice in 117 degree weather. Finally got the lymphedema under control. Yayy!! LOL. Decided Ariel and I needed girls day out. Took my powerchair and Ariel on the Paratransit to one of the casinos that had a movie theater. We had brunch. Went and saw a few movies and had a great time. Paratransit come to get us. Loads me and my chair onto the bus and proceeds to speed throu the parking lot at 45 mph. Flys over a speedbump, he had strapped the wheelchair I was sitting in wrong and I flipped backwards. Hurting my neck and back. Spent about a year in treatment trying to get over the injuries I sustained. And believe it or not, I smiled through all this and really did a good job moving on. Fast forward two years, my partner of almost nine years calls it quits. Same day as I was diagnosed with steroid induced diabetes. Soooo...she went her way. Ariel and I got a new place. My new life was set to begin. One week to the day we moved, I decided to go meet Ariel at the bus stop because my car needed a new alternator and was not going to be fixed till that night. As I was walking to get her, an old man in a truck wayyyy tooo big for him, ran me over. Backed up and hit me again. I still dont get that. Poor Ariel was passing by on the bus and saw her mama get hit. It was awful. I was under the truck waiting for the ambulance and I could hear Ariel screaming. Was taken to the hospital. Basically hurt my arm, shoulder, lower back and neck. Yet another thing to get through. Which I did. The massage therapist I was sent to after the accident to help with spasms used to tell people that were in the waiting room, "Look at this woman. She has been through more in 9 years than 10 people should go through in a lifetime. She always has a kind word, a smile and hug for me and anyone she feels needs it". So I always felt that maybe that was the Universal reason I needed to go through all this stuff. To make people see that even in sadness and pain, that there can be happiness.
Ok, so back to the conversation Ariel and I were having today.....We were talking about how lucky she was that she wasnt a latchkey kid. That she always had me home when she needed me. How I was so available to her. And I reminded her that the only reason that I was able to do that was because of all the surgeries and health issues. She asked me if I could change that, not have all this stuff, would I. I thought about it for all of two seconds and replied, "Honey, I wouldnt trade ALL this pain and aggravation EVER. It was through all of this crap that I was able to be here for you. Most kids will never know what it is like to have a parent around 24/7". She came over, hugged me tightly. "Mama, I love you so much".
So how lucky was I to have been blessed with ALLLLL this stuff? Ive never regretted it for a moment.

With all my love and support to the rest of you who fly your differently-abled freak flags.

[FeminineAllure]

I have lived with several invisible illnesses but I want to address bipolar depression at this time. I have lived with this for over 25 years. You can not see my pain, depression, anxiety but it is often there. I have always been open and upfront about having this. I find sometimes people will assume because I have had a really bad day or am just burned out or if I am genuinely sad some days it is because I have bipolar. That is not always true. I can have a bad day like everyone else and it can have nothing to do with being bipolar. That assumption pisses me off.
I also don't like to see the treatment or misrepresentation of the mentally ill in society by some of the hospitals, police, commercials, television, cartoons.
I am just naming a few sources where I have seen fun poked at bipolar disorder that was really inapproprite. If some hospitals provided the same treatment to diabetics, heart disease patients, etc... A physical illness, their doors would have been slammed shut by advocate groups.
There have also been threads not on this site but something about an ex being bipolar. So...the ex could not just be a bitch in general?, or simply done with the person or or or... The entire end of that relationship was because the ex had bipolar. EYE ROLL. Many bipolar people are stable and do take their medication.
Thanks for letting me vent SuperFemme.

[violaine]

asperger syndrome may physically present in quirky and clumsy, but that could be anyone off the spectrum as well.

when people do not see what it looks like on a daily basis, they can be so quick to make judgments ! a diabetic has blood glucose spikes with too much honey, and that seems easier for many people to relate to - there's a glucose meter, injections, or general acceptance of 'diabetic' complications.

i walk the roads daily between NT world and my ATypical [AT] wiring, and feel like another species with loads of expectations to 'fit' in, comprehend, agree with, and accept blindly of situations- in some cases these do make so little sense to me.

questioning people who are not on the spectrum has been a mixed bag for me ! i think my questions may come across unexpectedly because i present physically 'normal' [although i dislike that word immensely!]- and there's a possibility for : sense of confusion, defensiveness, or thinking i'm 'weird', even if i frame questions gently. in the work i do with animal welfare, my committee are real tight- there are no communication issues. however, in dealing with other board members - whenever i am asked, and i often am, to provide my thoughts- that's a slippery slope! depends on the person- backfiring of my need for further clarification has sure happened on line also. others forget [and i do hear that!!] i'm on the spectrum- therefore, am i set up for failure? there's no need to be 'failure', my processing simply cannot the same as NeuroTypical [NT].

[Lady Jewel]

Ms. Allure, I am so sorry that you have gone through the pat 25 years dealing with peoples ignorance. But remember, its THEIR ignorance, not yours. You know that when youve had a bad day and feeling (Fill in the adjective blank) that it was because you HAD A FUCKED UP DAY. Not because of your BPD diagnosis. I have always said that illnesses that start in the brain should be treated by society like any other illness. That we dont separate mental health issues from the rest of the body issues. Whats the difference?? Its ALL ilnesses of the human anatomy.

Warmly,
Jewel

Originally Posted by FeminineAllure

I have lived with several invisible illnesses but I want to address bipolar depression at this time. I have lived with this for over 25 years. You can not see my pain, depression, anxiety but it is often there. I have always been open and upfront about having this. I find sometimes people will assume because I have had a really bad day or am just burned out or if I am genuinely sad some days it is because I have bipolar. That is not always true. I can have a bad day like everyone else and it can have nothing to do with being bipolar. That assumption pisses me off.
I also don't like to see the treatment or misrepresentation of the mentally ill in society by some of the hospitals, police, commercials, television, cartoons.
I am just naming a few sources where I have seen fun poked at bipolar disorder that was really inapproprite. If some hospitals provided the same treatment to diabetics, heart disease patients, etc... A physical illness, their doors would have been slammed shut by advocate groups.
There have also been threads not on this site but something about an ex being bipolar. So...the ex could not just be a bitch in general?, or simply done with the person or or or... The entire end of that relationship was because the ex had bipolar. EYE ROLL. Many bipolar people are stable and do take their medication.
Thanks for letting me vent SuperFemme.

[friskyfemme]

Originally Posted by SuperFemme

I'd like to have a discussion about invisible disablities.

This thought is spawned by the Food Stamp thread, and the fact that so many people look down upon and judge those who are seemingly "capable and able to work".

Sigh.

My brain injury is invisible.
My leukemia is invisible.

For the first five years after my accident I was so ANGRY because I wanted to work. I cannot tell you how next to impossible it is for me to track things, multi-task, let alone the short term memory issues that leave me looking quite the fool because I had no idea that I had that conversation with somebody an hour ago.

Then along comes cancer, and there are days when my body is a living hell.

Today somewhere I read cancer = prvilige and I had to literally turn off my computer I was so hurt.

So those of you with Aspergers, ADD, Dyslexia, MS, Depression, Cancer, and the hundred other invisible disabilites...do you ever get fucking tired of having to quantify yourself to people?

Does it hurt you that some think you are deserving of assistance whilst others are not?

I really am just a normal girl, with some quirks that make my abilities different.

I don't want pity. I want understanding, which IMHO is so much different. I feel so isolated and misunderstood sometimes. In my perfect world people will judge me for what is on the inside of my beautiful self. The same as the rest of you guys.

I think this is a really important conversation to have.

FriskyFemme, I cannot even begin to imagine the frustration of going through life with dyslexia. It feels so unfair to me that you are just now finding the tools you need. I applaud you for wanting to become a tutor, and I hope you can be a mentor to others on this site who share in your dyslexia. Welcome to the thread, I'm so glad you are hear.

Sometime, if you don't mind, would you share what it's been like for you? How you navigate through a world of forms, books, readings etc? I want to be educated, and while I know I can go read a book (which I am willing to do) a personal journey to me is far more educational. I'd like to know what I as a human being can do to help out.

Thank you for your acknowledgement of my frustration. I have always felt inadequate because I couldn't 'outgrow' dyslexia. I have been lucky to have gotten some helpful tools at least to read for comprehension. Actually the same tools used to teach 'Speed Reading' which I took my first semester in college. These help me to approach reading material in a methodical way (this is key in reading for comprehension). I can go into that further in another post. The problem that still exists is that dyslexia is NOT a reading disorder it IS a language disfunction. You see, written language is not a logical sequence. The letters used to form words don't make sense to me. In English, American English anyway, too many exceptions to rules exist: words that can be a noun, verb, or adjective like the word 'cool'. Also multiple meanings, words that are spelled the same but have different meanings, words that sound the same but spelled differently and have different meanings (sense,since). Unfortunately, reading for comprehension is NOT helpful in tests with essays questions. I often overlook small words like 'not'. Luckily most standardized tests are written in postive terms nowadays.
Dyslexia is found in the gene for language. Pathways in the brain for language are different for us. I learned written language by memorizing every word and detecting words inside words and trying to figure out what the 'whole' word means by it's parts. For instance 'developmental' develop 'create'; mental 'thinking'. Hmmm.
We are very visual thinkers. I commit words to memory by 'seeing' them in my mind and mentally filing them kinda like a thesaurus 'the dinosaur' <- my visual(lol). I have to stop writing for now. I am worn out. I have spent 2 hrs writing this.

I just want to say I would never want to trade my dyslexia for the pain you have endured. You are truly a Superfemme.

[friskyfemme]

Originally Posted by Lady Jewel

Please forgive the long post....So I just read through this thread for the first time. With some trepidation, I will share what makes me "differently-abled". Its funny that I found this thread today as my daughter and I were having a conversation about me and my health today and how it has affected AND helped us. I'm crying as I share this story because it really is a story of triumph but also some sadness for me.

Ariel (My 16 year old daughter. My only child. My hope for the future and reason for living) and I were talking to today and I started telling her stories about herself from when she was in my belly to the present. We laughed. I cried, as I am now in the retelling of this encounter today. I must digress for a moment so that when I share what I said to Ariel, will make sense. My life as I know it, pretty much went to hell when I was 39. I am now 48. I was partnered. I had a job I loved. Was at the top of my game and never thought it would end. It started out with blinding headaches and neck pain. I went and saw everyone until the ENT told me it was in my jaw and needed to go see an Oral Surgeon who was also an MD. This Doctor, my hero, was known as the best Oral Surgeon in Vegas. Did all the diagnostic tests, Yada yada. Came back that the disc in my jaw had all but turned to powder due to arthritis and degenerative disc disease. Soooo..I went on leave from work. Went to the hospital and had reconstructive jaw surgery. The blinding pain I had was gone almost instantly. Went for the PT. Worked my ass off and was able to go back to work shortly afterwards. In subsequent months, I started having shooting pain down my arm into my hands. I thought it was Carpal Tunnel and started wearing a brace. A month goes by and the pain gets worse. So one night I spent four hours bent over Ariels Girl Scout sash sewing badges onto it. Well that must have been the straw that broke the camels back. Woke up the next morning and had pain like my arms has gasoline poured on them and set on fire. Went to my PCP and he sent me to have MRIs of every body part. Turns out that 3/4 of my cervical spine had NO discs left between the vertebrae at all so I was basically bone on bone. Had to go thru a million (Well NOT that many, but certainly felt like it) painful diagnostic tests before surgery could be done. Well, nothing got better, only worse. I ended up having 3/4 of my cervical spine reconstructed. Woke up from surgery with NO pain. Yayyy!!!. Did the PT so I could regain the mobility in my neck. About five months later, the pain began again in earnest. Back to the orthopedist. Well, more bone spurs grew back and they had to re-do the entire surgery all over again. So Another surgery and another 5 days in the hospital, but this time I ended up in the ICU. Oh I forgot to mention between neck surgeries I travelled from Vegas to the University of Iowa, which has the number one orhtopedics program in the country , for a second opinion with an Orthopedist and a Rheumatologist. Diagnosis: Degenerative disc disease in my C-T-L-S spine. Degenerative arthritis. Some type of inflammatory autoimmune disease. Oh and one of the worst cases of Fibromyalgia the Rheumatologist has ever seen. Soooo...Got through the second surgery, About 7 months later, the pain in my lower back became unbearable, and yup, you guessed it...another two surgeries on my lower back. Came out of that in a wheelchair with the prognosis that I would always need that powerchair. I called bullshit on that. Yeah I needed for a while, but fought my way out of that one. One of the wonderful legacys that the surgery left me, was the Vascualr surgeon damaged the lymp nodes in my abdomen which gave me Bi-lateral lower limb lymphedema. My legs were so filled with fluid that the girth was 27 inches around my ankles. So in my handy dandy wheelchair that I was still in, I took the Paratransit bus to the lymphedema clinic three times a week. In the middle o very hot Las Vegas weather. part of the treatment consisted of three layers of special bandages from my thigh to my toes. Real nice in 117 degree weather. Finally got the lymphedema under control. Yayy!! LOL. Decided Ariel and I needed girls day out. Took my powerchair and Ariel on the Paratransit to one of the casinos that had a movie theater. We had brunch. Went and saw a few movies and had a great time. Paratransit come to get us. Loads me and my chair onto the bus and proceeds to speed throu the parking lot at 45 mph. Flys over a speedbump, he had strapped the wheelchair I was sitting in wrong and I flipped backwards. Hurting my neck and back. Spent about a year in treatment trying to get over the injuries I sustained. And believe it or not, I smiled through all this and really did a good job moving on. Fast forward two years, my partner of almost nine years calls it quits. Same day as I was diagnosed with steroid induced diabetes. Soooo...she went her way. Ariel and I got a new place. My new life was set to begin. One week to the day we moved, I decided to go meet Ariel at the bus stop because my car needed a new alternator and was not going to be fixed till that night. As I was walking to get her, an old man in a truck wayyyy tooo big for him, ran me over. Backed up and hit me again. I still dont get that. Poor Ariel was passing by on the bus and saw her mama get hit. It was awful. I was under the truck waiting for the ambulance and I could hear Ariel screaming. Was taken to the hospital. Basically hurt my arm, shoulder, lower back and neck. Yet another thing to get through. Which I did. The massage therapist I was sent to after the accident to help with spasms used to tell people that were in the waiting room, "Look at this woman. She has been through more in 9 years than 10 people should go through in a lifetime. She always has a kind word, a smile and hug for me and anyone she feels needs it". So I always felt that maybe that was the Universal reason I needed to go through all this stuff. To make people see that even in sadness and pain, that there can be happiness.
Ok, so back to the conversation Ariel and I were having today.....We were talking about how lucky she was that she wasnt a latchkey kid. That she always had me home when she needed me. How I was so available to her. And I reminded her that the only reason that I was able to do that was because of all the surgeries and health issues. She asked me if I could change that, not have all this stuff, would I. I thought about it for all of two seconds and replied, "Honey, I wouldnt trade ALL this pain and aggravation EVER. It was through all of this crap that I was able to be here for you. Most kids will never know what it is like to have a parent around 24/7". She came over, hugged me tightly. "Mama, I love you so much".
So how lucky was I to have been blessed with ALLLLL this stuff? Ive never regretted it for a moment.

With all my love and support to the rest of you who fly your differently-abled freak flags.

Lady,
You are truly a great inspiration! Blessings to you! May Great Spirit wrap you in love and peace. Aho.

[SuperFemme]

A lot of invisible disabilities are often stigmatized in a very ugly way.
Bi-Polar is a medical condition, with a lot of social stigma attached to it that is inaccurate. Dyslexia often goes unseen in our educational systems and students are put in classes with the developmentally disabled.

People with Asperger are also so misunderstood most of the time as socially inept.

Brain injury is invisible, but often the behaviors that come along with it make people think the person is crazy or stupid.

Addiction is also a disability that is very stigmatized. It's a disease (although I am sure somebody will come in here and debate that)

At what point is it safe to reveal? I personally like to reveal it all upfront, because if you can't handle being around me I don't wanna fall in love with you only to lose you for the things I am not in control of.

I tire of how ugly our society has become that people like Sarah Palin can demand a Politician resign for using the word retard and then out the other side of her mouth defend Rush Limbaugh because he is being satirical so that is ok.

Rush, who suffered the disease of addiction should be more careful.

[Kenna]

Originally Posted by SuperFemme

No Corkey you belong here. When I speak from the Me place it ends up being in relation to brain trauma because that is part of my differently-abledness.

My physical limitations come into play as well because when I am in pain, or on chemo it affects me and how I engage with the world around me.

My goal is to make sure that we all (no matter the nature of the different-ablility) are heard and part of a community that is inclusive to us all. That is a new undertaking in the online community IMO.

So welcome to the thread. Share. About anything you want to. This is a safe place where you (general you) can laugh, cry, and share about navigating planet earth and the butchfemmeplanet while being different.

Originally Posted by Corkey

Thank you, for the inclusion I appreciate that.
I still find it ironic that abled bodied people see my cane and not the person, and they park in disabled parking and run into the store, while I'm left looking for the next closest parking spot.
Chaps my ass to no end.
The newest peeve is when I'm using the stores mobile chair, and cart pushers think it's easier for me to back up than it is for them to stop, wait and then go around me. Those chairs don't stop on a dime ya' know!
Thanks for a place to rant....end rant.

One main reason why I LOVE BFP and adore the friends I've met here.... there's open space and individual space, and I've been welcomed and accepted... no-matter my differently-abledness status... and I don't feel targeted or pushed to the side for being different. I was a victim of a very violent domestic violence TBI (years ago). But the injury has never been treated other than spending 2 weeks in the hospital. (I've tried to learn to live with it...Some days are really hard, especially when I can relate my current health, difficulties with various tasks & ability to maintain memories and thought processes, back to the TBI. I didn't have health care at the time. Although, my last job helped because I worked for Medical Assistance in the "Special Populations Unit" - TBI was one of the State Programs we managed and coordinated with the Department of Health.)

Mostly these days though, I suffer from Lupus... today is a very painful day.
Thank you for making me feel welcome and accepted!

[Andrew, Jr.]

Yep, I get told that I am lying about my head injury all the time. However, when these people "see" the Cat Scan's, and MRI's you can see the color in their faces change to bright red. They are so embarassed by their words.

I also have multiple disabilities. My diabetes is the newest one. It has plaged me for years, but I was able to maintain my weight, and the highs/lows of my blood sugars so I didn't need to have insulin, or any pills. That has changed. The endo. that I see told me that what has been happeneing is that the sugar in my body has been acting like strands of glass and ripping and tearing my body appart inside out. That is why my body takes longer to heal when I cut my foot open when I walk barefoot in the summertime. Or I get pneumonia I am on antibiotics for months. So now I have to take the diabetic pills to help my body.

I am more verbal online than in real time. It is just that what is inside comes out moreso via the computer. Too many trolls, and favoritism kill threads like this. I hope and pray this one keeps going. For example, you have those who think something is wrong with me (well, yes there is), but don't want to talk about it. Or if they understand the deficit they run the opposite way. It is fear. Like trying to understand someone talking who is severely disabled and drools as they speak.

In school I failed. I had tutors, but no real help in getting me thru school. Today if you had me in school, I still would fail. I hated school. Just the memories of it give me a bad taste in my mouth. When folks talk about going to their high school reunions, I refuse to go. Why do I want to see the fruits of others successes, and families who bend over backwards to help their kids out, when all I could do was keep from drownding. Life is not fair. I learned that the hard way.

Now as I am aging, my disabilities are getting worse, and more visable. For example, my seizures. They are becoming more intense and longer.

The one thing that really upsets me to no end are the people who are corporate hotshots. We all know them. The ones who "talk" about being ceo of their family's insurance company, or the people who travel all over the world for certain companies to advertise xyz, or the ones who start up their new ventures, and so the list grows and grows. I am happy for these folks. Truely I am. But it is very hard to swollow someones glory when I am sitting in physical pain, and I can't verbally express it. It is isolating.

I just hope and pray nobody feels the isolation that I do. It is hell.

Andrew

[SuperFemme]

Andrew,

I think many of us feel the isolation that you do.

We met about seven years ago (can you believe it's been that long?) when you shared your brain injury with me. When I read your posts I read them with a special understanding that only a person with TBI can have.

You are NOT alone.

Hey? When you have seizures do your dogs sit on you? When I wake up my min pin has his face covering mine.

The people that TRULY love me and get me? They say nothing when I tell them the same story like 1000 times because I don't remember I told it in the first place. They understand my swiss cheese brain and love me BECAUSE of it, not in spite of it.

I've seen lots of people go to bat for you, and I know that you have friends. I think the biggest blessing you could strive for is to not isolate yourself. Does that make sense?

When I get embarassed, impassioned and make mistakes my first inclination is to isolate. Instead, I have learned to laugh at myself and accept that it's just who I am now. Don't get me wrong, I have strong moments of self doubt and anger. I just refuse to stay in that head space.

hugs,

adele

[Daywalker]

Originally Posted by SuperFemme

Andrew,

I think many of us feel the isolation that you do.

We met about seven years ago (can you believe it's been that long?) when you shared your brain injury with me. When I read your posts I read them with a special understanding that only a person with TBI can have.

You are NOT alone.

Hey? When you have seizures do your dogs sit on you? When I wake up my min pin has his face covering mine.

The people that TRULY love me and get me? They say nothing when I tell them the same story like 1000 times because I don't remember I told it in the first place. They understand my swiss cheese brain and love me BECAUSE of it, not in spite of it.

I've seen lots of people go to bat for you, and I know that you have friends. I think the biggest blessing you could strive for is to not isolate yourself. Does that make sense?

When I get embarassed, impassioned and make mistakes my first inclination is to isolate. Instead, I have learned to laugh at myself and accept that it's just who I am now. Don't get me wrong, I have strong moments of self doubt and anger. I just refuse to stay in that head space.

hugs,

adele

I laugh at Me all the time.

It has saved mah Gifted life more times than not.

I used to say
"If you cannot laugh at yourself, others will do it for you"

Beating them to the punch is unintentional, but a pleasure all the same.


I have more to share, very soon...promise.

[Andrew, Jr.]

Adele,

Yes, I do remember! I close my eyes and I see you. I remember our hug. It was fabulous. Like Indiana Jones and his woman friend (I can't think of her name).

As for Dino, yes. After my seizures, he is on my head, and starring at me. Eye to eye. I can't get over it. He is just my everything.

I am always laughing at myself. You have no idea. It is like an adventure with me every day. Nothing is normal in my life. But what I mean is like the everyday sort of thing with other people. They just have no idea. None. I just had someone call me a retard in the grocery store because I asked him 3 times for the aisle no. for oranges. There is none. Who knew? You would have thought I was shopping for milk, eggs, and tp, and God knows what else there was. We were having a snow storm.