I HAVE FEARED BEING LABELED 'DISABLED

"he offered to pay me $20 bucks to not call the police & then left me for dead"

In the past, it has given me great Serenity to hear that my loved ones "don't see me as disabled." I have been called "a crippled b*tch" by heartless girls. I've had cabs stolen from me in the rain by able-bodied people who waited for me to catch the cab & then, as I struggled to crutch towards the door, ran in front of me & took it. I dated a boy who's parents, after meeting me, told him that "he deserved better than a crippled girl" & that "it was obvious that he was settling with someone who's disabled." I FEARED HOW PEOPLE VIEWED ME. I wanted desperately to be THE OLD ME: To run, skip, jump, hop, dance, swim, boogaloo, slip-n-slide, sprint stairs at the HS stadium, drive, go on adventures, rock climb, surf, pick up my niece & nephew, wear heels & pants that fit with a huge knee brace. I was riddled by guilt because the children I had picked out to be in an orphanage in Mexico City (which was to open March 1, 2009) are now lost in the streets bc I was unable to be there to finish setting up the shelter. The family of the 81 year old man- who hit me, offered to pay me $20 bucks to not call the police & then left me for dead- blame ME for his death 9 months afterwards. The man had a heart condition & his family contends that all the stress of what he did to me "did him in". I am broken-hearten over missing my cousin, Christy's, wedding this weekend in CT (my doctors have ordered me to bed rest again). I have missed college, HS & study abroad reunions. I have had migraines that lasted for days and left me hemorrhaging (blood and cerebrospinal fluid) from my ears and my nose. I have gone to the Emergency Room more in the last 2.5 years than I have gone out and had fun. I have done double sessions of Physical Therapy 3xs a week for over two years. I have cried myself to sleep more times than I could ever count. My baby niece refers to any crutches as "Mandy" and it dawned on me that neither my niece nor nephew remember me any other way than injured. I have met more inspirational people in the last few years than I ever imagined possible. I have ridden on the back of a moving vehicle with a driver who had NO IDEA I was on his car & and lived to tell the tale. If I had landed a different way upon hitting the street, the disks in my Thoracic spine which are impinging (poking) my spinal cord could have sunken further into my spinal cord & left me quadriplegic. ** I AM BLESSED ** I have numerous traumatic brain injuries and can still form sentences. I am surrounded by the love of my friends and family. I feel a burning desire inside of me to someday share the lessons this nightmare has taught me with the world. I have discovered that life is more about a series of ATTITUDES, as opposed to a series of CIRCUMSTANCES. I am infinitely stronger than I ever imagined. I have the cutest little Jewish Neurologist from Brooklyn who makes me want to hug him every time he speaks, even when he's giving me bad news. I recognize the light in EVERYONE I cross paths with. I have eliminated all negativity from my life & only welcome positive energy. I can not control the past but am controlling what I will do with it. I am BETTER than the old me: I am stronger, more focused, more driven, more appreciative, more loving, more hugging, more dreaming- My heart broke in early 2009 along with my body, but I kept it opened and it has GROWN & is now overflowing with love for everything around me. I have gone to the beach and watched the sunset over the water, something I dreamed of doing for the year+ that I was in bed for. I had a team of dragonflies land on me while sitting in the sand & discovered that dragonflies are NATIVE AMERICAN symbols of hope, strength in the face of adversity, endurance, rebirth & rejuvenation. I left the beach crying one day after seeing everyone around me doing everything at once that I wish I could do, only to force myself back to the beach the next cloudy day. I wore a hat down low & was on the verge of tears. I didn't want anyone to look at me because I felt very aware of how DIFFERENT my body was from theirs. My twin brother, Ryan, took a picture of me with the cloudy sky in the background & we were BLOWN AWAY when we saw the pictures: The dark, cloudy SKY was opening up above me and a bright, vibrant light was shining through and touching me in every picture (shown here). I knew my angels were sending me a message that "EVERYTHING IS GOING TO BE OKAY". I want you to see me for WHO I am today. I am disabled. I am beautiful. I am strong. I am indestructible. I am determined to not let my physical limitations hold me back. I want you to think of me when you see someone wheeling themselves, crutching or caning themselves through life. I want you to realize that THEY, I mean WE, are no LESS than YOU because we are DIFFERENT. Every wheelchair, crutch and cane has a story and a HERO behind it. Our society should EMBRACE this inspiration instead of constantly shunning it. I am a spiritually-remodeled version of my pre-accident self. I REFUSE to stop fighting towards my COMPLETE recovery. FAILURE IS NOT AN OPTION!! In the meanwhile, I am learning a plethora of lessons from this debacle & hope that no one ever has to experience first-hand what the last few years have been like for me. But, they DO say that pressure MAKES diamonds. And what girl doesn't love Diamonds, right?!?! I will proudly wear these $piritual Diamonds as the new jewelry of my soul during my healing process and long after my recovery is complete. My wheelchair may not have hot rims but my soul is most certainly bling-blingin these days... and that makes this girl smile =)
Brought to you by Hope 4 Disabilities

Written by Amandita Sullivan http://www.facebook.com/AmanditaSullivan

MRI's are Scary: Don't You Think?

Being inserted in an MRI machine

How did I cope being diagnosed with Multiple Sclerosis?
For me this one question, "How did I cope being diagnosed with Multiple Sclerosis"? does not have an easy answer.  As I reflect back to that time when I had my first symptom I had felt a very strange feeling on my rear on the left side.  At the time I could not even describe the feeling.  It just felt like there was a big whole, now I know that it was numbness.  This was on a Thursday night.

The next day it started going down my left leg straight into the foot.  My left foot felt huge likes an elephant foot but when I looked it down, I saw just my foot.  I had to work that Friday and I always wore high heals with my suits, well that day I had to were some ridiculous flats that I had.  It did not go well I really needed to sit down but I couldn’t because I could not let this interfere with my career.  My boss kept asking me if I was OK, he was worried and told me that he was going to send me to the emergency room to get looked at. That was on a Friday.

Sunday I went to a different one and then back to work on Monday but my boss sent me to a different emergency room.  At all three visits they found nothing.  I was tested for upper GI stuff and basically everything under the sun.  The doctors were very puzzled and could not understand it, which made me feel very isolated and alone.  What was wrong with me?  At the third visit on doctor came to me and said the only thing he could think of what that if I had some numbness maybe it was neurological thing and that I should find a neurologist.

Now at that time I never heard of a neurologist I asked if the doctor could refer me but he could not for whatever reason.  I guess the first thing I did was go home and lay down so I would not get a serious headache and wait for the pain of the spinal tap to go away.  At this point I had not yet been diagnosed with MS my doctor was checking for viruses.  My doctor said that viruses could mimic many things so he need to be sure, but my symptoms all led down the road to Multiple Sclerosis. 

A week later I went back to the neurologist and he confirmed his suspicions that I had Multiple Sclerosis but he wanted an MRI to seal the deal I guess.  So that afternoon I went and had my first MRI.

Now there is a funny to tell about my experience.  About 3 weeks prior to the MRI I went and had my bellybutton pierced (not knowing that I would have to undergo an MRI). You cannot have metal on you during the test so I had to take it out.  I was so worried that I would not be able to get it in that when I was in the dressing room putting on my gown I called the piercing place, told them what was going on and if they would put it back in for me.  So after my MRI I went to Pacific Beach, Ca and had the technician insert my piercing one more time.  I was so glad that I did this because I was terrified of putting it through the sore skin.  So I was like so happy and now nervous of what was a head of me.

I had never seen an MRI machine except on TV and what I had seen was a tiny hole that I could not see how I or anyone else could fit into.  I walked into the room; it was very cold and very sterile and very white.  The MRI machine looked very intimidating and loud.  The technician had me lay down on the long thin table that goes into the machine and covered me up with warm blankets.  Do you want some headphones to listen to music she asked and I was thinking how odd to ask me such a question.  Did this mean I would be in that thing for a long time?  She explained that the machine gets this loud knocking sound and can be a little scary.  Well once she had put this brace thing on my head and locked it down into the table I started to freak out.  Total anxiety!  Please I told her let me where the headphones so I would be able to relax.  My neurologist did prescribe a pill that would help me with what I was feeling it’s just it had not kicked yet.  So anyway, the technician left me alone on the table and left the room to watch me through a window.  OK I’m lying there wandering what is going to happen next and the table started to move backward.  All I could think of was to start praying and ask for deliverance of this experience.  The table kept sliding backwards and seemed to never stop until I was all the way in.  I was so afraid to open my eyes and when I did I really regretted it because I could see how small and tight it was inside and it was so bright.  I had my headphones listening to top 40 radio, my medicine was kicking in and I was starting to relax thinking this wasn’t so bad.  Well wrong thinking!  There was more to this experience!  The machine sounded as if it was being hit really hard on both of it’s sides and started to shake.  I started praying again and then fell a sleep, which was good; I did not have to live through the battle that the MRI machine seemed to be having.  Once in a while I would hear a voice telling me to be still and not move my head, the voice sounded so far away like I was in spaceship or something.  After awhile the table started to move forward and the sounds had stopped and I was trying to wake up from the grogginess of the drug, but it was very difficult.  “How was it? It’s so bad is it?  The technician said to me and I was no way in agreement.

Grounhog Day: Being a Caregiver

Today I have found myself reflecting on all the things that my husband (Stewart) does as my caregiver.  He is an amazing person and I very blessed to have him in my life.  We have been married 13 years now. 

Stewart's morning starts out 5:00 a.m. getting out of bed and getting ready for work.  Then he gets my morning pills together along with my cranberry juice mixed with a laxative and brings it into me to take before he leaves.  He apply's a patch on my back that is a medicine used for early onset Alzheimer's.  No, I don't have Alzheimer's but I do have Multiple Sclerosis (diagnosed 15 years ago) which can have terrible problems with cognitive abilities.  The patch really does work by way. 

Stewart works hard all day and makes a really nice living.  Again like I said before I have been very blessed to be married to him and have him as my caregiver.  He is kind, considerate (most of the time) :o), strong and very smart.  He has learned and understands the fine line between being a caregiver and a husband.  The two are very different from each other and when they get intertwined it can get very messy.  A caregiver has different duties then what the norm is for your spouse.

Back to my story.  Now, it is time for him to come home from work.  He sits in traffic for about an hour before he arrives home.  He comes gives me kiss, pets the kitties and right away starts making our dinner.  You can see that he still hasent stopped since he left in the morning.  Go, go, go is his motto, well not really but it should be because that's all he does from a.m. to p.m.  After dinner is finished he cleans up the kitchen and prepares my evening pills.  After that he is able to rest for a little while before bed.  At that time he gets maybe an hour or so to be my husband before he turns back into a pumpkin oh I mean caregiver. lol lol  It just doesn't stop for him.  After is time to chill he still has to go get his clothes ready for work the next day, make the coffee and clean the cat box.  It's another Groundhog day all over again.  Wow, just writing this I'm realizing really how much he does in his day! No wonder he is always so exhausted and says that he cannot add one more thing to his plate!  I do actually realize most this to a point but I'm not in his shoes to know exactly how or what he is feeling, most of the time he says he is fine.

You are probably wondering where I am in this marriage.  I stay home all day not able to drive much and work on Hope 4 Disabilities.  I do laundry when I can, clean up and organize my house and help out where ever I can.  A lot of days I just can hardly move due to extreme fatigue, cognitive problems with memory and terrible pain in my back and a lot of times all over my body.  Sooo because of all this I cannot be me at least the me that I used to know.  Ok,  that's a story for another time.

Stewart, to the best of his ability's helps me live a full life.  I have so much to be thankful for and I am also thankful that the good Lord is with me and helps me get through my days.  Well, it's time to start the day all over again

 Thank you Stewart for loving me for me!
 Well that's just about it, at least what I can remember. lol lol

Hope 4 Disabilities

 Kimberly was diagnosed with Multiple Sclerosis in 1996.  In 2003, she had to leave her career in marketing because her disabilities were advancing.  It was at this point that she realized  how little support is available to those living with disabilities.  She especially noticed a lack of of access to resources. 

This realization led her to found Hope 4 Disabilities, a non-profit organization whose vision is tremendously comprehensive.  Whose mission will be to reach to the disabled with resources and support.

H4D embraces a broad definition of “disabled” which includes both temporary and permanent mental, physical, and emotional disabilities.  Kimberly believes that disabilities exist as much in ones mind as they do in ones body—and that all “disabled” individuals should have ready access to resources and support.

She believes a centralized database, readily accessed and easily searched, is merely a place to begin.  She, along with her Board, are working with State officials and with other community organizations to provide the assistance and support that will allow disabled individuals to participate as equal members of our society.  Their dream is that, one day, society will “treat all people with disabilities as just people; where we don't see the disability, we see the person.” 

H4D is chartered to  1) improve the lives of all disabled people, from conception to natural death, through services, advocacy, and education; and to 2) provide services and education for parents who have children with a disability.  It has secured non-profit status.  Kimberly L Selden is the President, Heidi J Swenson is the Vice-President, and their Board is composed of both resource people and other disabled individuals or parents of disabled children.

More information about their work can be found at www.helpsfordisabilities.org www.kimberlyselden.com

Multiple sclerosis: Origin of abnormal cells found

UC DAVIS (US) — Researchers have discovered the source of cells involved in a phenomenon seen in the brains and spinal cords of people with multiple sclerosis and Alzheimer’s disease.

Known as reactive astrogliosis, the condition is characterized by a large number of enlarged star-shaped cells. In multiple sclerosis, these abnormal cells are found in plaques that damage the myelin sheath that surrounds neurons, impairing their signaling function.
The new study offers the first firm evidence to date that, at least in the case of multiple sclerosis, the cells are descendant from normal astrocytes.

“This may not hold true for all diseases, but, in the case of MS, we have a very robust model,” says David Pleasure, professor of neurology at the University of California, Davis.
The findings, published in the Journal of Neuroscience, used genetic fate-mapping techniques in a mouse model to show that reactive astroglial cells in the MS model were derived from normal astrocytes that had increased in size and number.

The findings are significant because the neurological diseases and injuries in which the phenomenon occurs are also ones for which there are no effective cures.
Knowing the origin of the cells, scientists can now compare normal astrocytes with the ones associated with disease and try to figure out what has gone awry.

In multiple sclerosis, these abnormal cells are found in and around plaques in the brain and spinal cord, where there is evidence of damage to myelin sheaths and axons. In patients with Alzheimer’s disease or after recurrent head trauma, these abnormal cells are scattered throughout the brain.
“Some say these cells are ‘bad guys’ that contribute to the pathology of diseases. Some say they are ‘good guys’ trying to support the neurons under adverse conditions.”

The current study does not settle that controversy, but it is an important step in that direction and in the search for cures, Pleasure adds.

MS is an autoimmune disease in which a person’s own disease-fighting mechanisms attack neurons in the central nervous system, destroying the myelin and, to some degree, the axon—the long, slender projection of the nerve cell. The disease is characterized initially by episodes of reversible neurologic deficits. In most patients, these episodes are followed by progressive neurologic deterioration over time. The cause of the disease is unknown.

Normal astrocytes, collectively called astroglia, are the “helper cells” of the central nervous system, offering biochemical support and providing nutrients to neurons found in the brain and spinal cord. Until now, scientists did not know whether the cells found in demyelinating plaques came from other neurological cell types, as at least one study had suggested, or from normal astrocytes.

Fuzheng Guo, the study’s first author and a postdoctoral fellow in Pleasure’s lab, led the team that conducted the experiments for the current study. The team used genetically engineered mice whose astrocytes express enhanced yellow fluorescent protein when injected with tamoxifen, a synthetic form of the hormone estrogen.

Researchers injected these two- to five-month-old mice with tamoxifen and, 30 to 40 days later, injected them with a protein that causes experimental autoimmune encephalomyelitis, a widely used model for MS. Control mice received sham injections. At regular intervals, the team scored the severity of the multiple sclerosis-like symptoms, such as limping.

The idea was to determine what happened to the normal astrocytes—as well as any cells that might descend from them via cell division—as the animals developed the disease.

At the end of the experiment, the team counted and measured astroglial cells in both diseased and control mice. They found, in the gray matter of the brain and spinal cord, only an increase in cell size. In the white matter, they found both an increase in size and number of astrocytes.

The team also conducted similar experiments tracking the fate of other neurological cell types, including oligodendrocyte progentior cells (which give rise to oligodendrocytes that insulate axons) and ependymal cells (which line the cerebral ventricles).

According to Pleasure, the current study will help to guide the search for a cure for MS and other diseases involving demyelination. His lab and others are now repeating these experiments using models of other diseases. They also are taking a closer look at the potential role of astrocytes in those diseases.

“Now, we can, among other things, carefully compare normal and reactive astrocytes to understand what specific changes are happening and then get an idea if those changes are likely to be detrimental or supportive to neurons.”

The research was supported by grants from the National Institutes of Health, the National Multiple Sclerosis Society, Shriners Hospitals for Children, and the California Institute for Regenerative Medicine.
More news from UC Davis: www.news.ucdavis.edu/

@heidijswenson @mydisability @hope4disabiliti @chadbordes