Dear Social Security,
Having been denied Social Security benefits three times now, I found that I needed to speak up on my behalf since my situation isn't being completely understood. I was diagnosed with MS (multiple sclerosis) at the age of 22 (8/30/10). Before I was diagnosed with MS, I was an outgoing, sociable, active person. Where now I am limited as to what I can do day by day. I can no longer clean my house the way I once could due to the limitations of multiple sclerosis.
I cannot tolerate heat, and being in Texas, it's impossible to not "deal" with heat. I can no longer go outside and run and play with my kids. I can no longer cook anything that calls for me to use my hands for a long period of time or stand for a long period of time.
I can no longer dress myself while standing and speaking of getting dressed, I can no longer wear a bra because of the MS Hug I get while wearing one. To give you an example of the MS Hug feels like, imagine your body squeezing itself around your chest area, where it causes you so much pain that you can't move.
I can no longer crochet, which was one of my favorite hobbies, but my hands no longer allow me to do so. My hands don't do what I tell them to do and they get stuck in certain positions. I can no longer shower standing up. I must use a shower chair with a hand held shower head and I cannot take a shower unless someone is at home with me.
Two weeks prior to my diagnosis I received my Associates Degree in Criminal Justice Corrections. I was diagnosed with MS the day before I had an interview with the County Jail to be a correctional officer. I tried going back to school for my bachelors but learned that I can no longer handle going to school. I can't remember anything... I forget what I'm speaking about, as I'm talking. I can't remember to pay bills and I can't remember to do things that are asked of me.
To use the computer, I use a voice recognition program, that allows me to speak to it and it types for me. I can no longer go out with my friends because of my fatigue and spasticity. No matter how much sleep I get, I still want to go back to sleep. I cannot go grocery shopping alone and I must rely upon the cart to support me or the power chair available in the store.
I'm 24 years old and I'm dependent on the people around me to help me with every day life. MS has stripped me of my life and the damage that has been done cannot be reversed. I'm not going to wake up and "magically" be better. I can't even take care of myself and the home but yet I'm expected to still be able to work. I have to have an alarm on my phone to remind me of when to take my medications.
I'm 24 years old and I own a walker, wheelchair & cane. When I wake up in the morning, I can't just get up and get going... it takes me a while to start moving and take my medications. I suffer from hearing loss and vision loss. I sometimes do not wake up to my alarm to get my oldest son up for school, so he is penalized for being late at school because of my MS symptoms. My vision loss is scary, but I'm glad I haven't lost everything. I do have optic neuritis in both eyes... which causes a horrible stabbing pain behind my eyes that will not allow me to open up my eyes.
I can no longer do things that I used to because of my urinary frequency. If I laugh/cough/sneeze, I tend to "leak" which means I have to wear a liner "just in case". The constant weather change we experience in Texas increases the symptoms I deal with everyday. Yes, I am on medications to help with the symptoms I experience... but they are never gone. With all the medications I must take to dull my symptoms, they all have side effects themselves, which increases my fatigue.
It's not fair that my life has been stollen from me and I do not like to admit to my limitations. I wish I could work, I wish I could get out of the house, I wish I could be "normal" for a day, but the bottom line is, I can't, but yet I'm still expected to "push through it all" and work.
Some days are worse than others... some days I can actually do certain things that on other days I can't. Everyday I wake up, wondering what I will have to deal with on that day. Just because I seem "okay" one day, doesn't mean I'm that way everyday.
Multiple Sclerosis does NOT have a cure. There are medications to slow the progression of MS, but these medications aren't guaranteed to stop attacks on my Central Nervous System. There is no way to repair the damage that is done. There is no way to predict what will happen to me in the future. I'm dealing with the damage that has already occurred and I hope that no more occurs.
If what I have explained above isn't considered being disabled, what is? I know a lot of people on disability for depression and things of that matter. Well, I suffer from depression, anxiety, stress, memory loss, cognitive dysfunction, optic neuritis, nerve pain, pain, spasticity, tremor, urinary dysfunction, fatigue, weakness, vision loss, hearing loss & swallowing problems. And yes I'm only 24... with an illness that has no cure, where I can't undo the damage done, but I can get worse. There is no predicting what the future holds for me.
My question is... how am I supposed to work with the symptoms I experience? With no telling on what I will deal with on a daily basis... will it be a day that I can actually get out of bed?
PS: On top of being diagnosed with the above, I also have degenerative disc disease and spinal stenosis and asthma.