1. Disability parking is usually a distance from the entrance of an establishment. There is a curb most often that for me is like a mountain without any hand rails, so even if I am lucky to gets a chauffeur to get me there getting into the establishment can be trying. If I go to the smoothed out area the distance to walk to the front door can be a huge milestone. I know I can get a wheelchair, but frankly I really do not want to go there yet (afraid once I start I will not get out of one.) I guess I am just stubborn and a difficult handicapped person.
2. If I do park in handicap and manage to walk the distance I am looked at funny by others because I am not in a wheelchair. It is hard for many to understand that a 100 feet can make a difference in my ability to independently shop and spend money in the store. Heck my neuro’s office is on the second floor and way down the hall-way. Go figure you would think the neuro office would understand and be on the first floor closest to the front doors.
3. I am lucky I have FIMLA but with PPMS and active flares kind of the norm for me the numbered days do not fit my disability. To work all day can be a surmounting event and cause my nerve pain at night to soar to the point I am exhausted and the vicious cycle continues.
4. The go-carts in the store most often are not charged enough so half-way through the store they begin slowing down to the point I am faster. Just my legs tire to the point I cannot stand trying to get back to the front. I raced a drunk snail against one and won.
5. I am not disabled I have a mate called MS that is adventurous, just most days we are at odds with each other. I did try to find a divorce lawyer but funny no laws about divorcing MS. And this mate is expensive, intruding, abusive and rude. I guess I am stuck with my MS mate.
6. ATM machines usually have a curb to climb before you can use one…and the handicap parking is like way away from the machine. It is those little annoying miss-understandings that just drive me insane. It is these little annoyances that really take my independence away when I am having a good day with my MS mate and the urge to try to be normal.
7. Employers want you to work 5 days a week 8 hours a day. Try telling that to my MS mate as I try to pay the basic bills with the little income.
8. SSI wants me on my death bed before I qual for any help. After all I can work as long as I am willing to be physically exhausted after 5-10 minutes of walking. Sometimes I am on short-term disability but…I am making an income so therefore I cannot qual either. But you can only do this so many times before the employer and insurance companies start making funky noises at you. After all I am doing it on purpose because I really love feeling useless and unreliable.
9. Dang how can the medical world tell me they are on the road to a cure and yet cannot with defining words say what causes MS? Stop teasing me it is wearing me out.
10. Oh by the way, let us make medication long complicated words no one on earth that lives with MS really understands. Let us not even try to spell it. I just want easy terminology so I can make an informed decision on which evil path to take. Or supply me with an interpreter which I doubt is covered by medical insurance companies for medical terminology. My mind tells me the truth is hidden in those complicated terms.
11. Oh the nightmares I have on the treatments for MS. They help but the risks are high depending on the individual. So my MS mate drives me to play spin the wheel on my health and hope I land a winning hand.
12. No one can understand sneezing and your pants being wet and trust me there is no pad that can manage the results. After all I am pushed into drinking tons of water to keep hydrated. Yet, tell the doctor about the sneezing issue and you get do not drink so much water. Big help that one is. Chung-Ching pay the 40 dollar co-pay. What a demeaning way to treat a patient. What gets me most is the specialist charges 260 bucks and hour and I am lucky if I actually have face time of about 15 minutes, oh do not tell me about paperwork, the doc is typing into a computer.
13. Yeah there are laws about disability. However, sometimes/most times it does not apply to me, I fall into that grey fuzzy fog, after all my MS is very unpredictable and not keeping me totally down all the time. Yet, there are those that are disabled beyond human belief and I applaud their daily confrontation to survive their MS mate. Somehow I fall in that no-one understands zone as after all I am faking my medical dilemmas because tomorrow I might be able to manage a shower and get to work, or not. All I can do is try my best, but predicting the outcome is anyone’s guess.
14. Sleep without pain is possible drugged up, however, my MS mate still jerks my legs around waking me up. I think my MS mate is jealous I am sleeping.
15. So the understanding of those not in the nursing home or hospitable bed is just not there or even a winker of understanding. While there is understanding until the MS mate is not allowing me to conform to the norm of the working world or society standards. There are pockets of people that do understand and do try to understand, but those pockets are very few and not long lasting in support.
16. I have shower/tub that most times I cannot get into. Get a walk-in shower is impossible on my limited budget (Keep in mind my Credit Card is tanked due to medical bills.) I guess the egg on my head in the ER, from falling in the tub, is not worthy to steer me to safety. May be when I get rich and famous I can have one installed. Anyone find a money tree yet?
17. Oh and the smoke alarm is out of my reach to put in a new back up battery (I am banned from step stools and ladders due to my imbalanced teapot.) Why cannot the sensor be up where it needs to be but the mechanism be lower so I can independently put a new battery in?
18. I really do not have the right to complain about these small little endeavors as there are those worst off, but some days I really do wish it was over. I know there is counseling but I cannot afford another co-payment with the other entire specialist team that helps me to wrangles this MS mate.
19. There are dogs for the blind and dogs for the hearing that the laws support, but little support for dogs that smooth the emotional turmoil over. My dog, bless her heart if it were not for her I be pushing daisies up. She reminds me daily that I am more than just MS. The laws just do not understand the importance of this little comfort. I wish I could take her everywhere I go because when I hit one of those curbs, I am sure she will look at me with eyes that say what is the big deal Mom?
20. Trapped in my house most days as I cannot drive or take a walk down my neighborhood. I get a little cabin fevered after a few days.
21. The list can go on, and I hope some reading this will recognize a little of themselves and know they are not alone. MS is more than a disability it is a silent striping of one’s identity. I fight daily to remind myself that I am more than MS, that I have purpose despite my blurry vision, that on some days I can maneuver that curb, that one day there will be a treatment that will not destroy my liver or some other important organ, that wetting my pants is just a funny little reminder what old age will be, and most important that I do have purpose; my dog needs me.
22. They say that aging is not for the whimpy. But MS and aging is not for the weak either I have come to learn, a lesson I could do without. I just hope old-man God wakes from his nap and shines on me some day.
2. If I do park in handicap and manage to walk the distance I am looked at funny by others because I am not in a wheelchair. It is hard for many to understand that a 100 feet can make a difference in my ability to independently shop and spend money in the store. Heck my neuro’s office is on the second floor and way down the hall-way. Go figure you would think the neuro office would understand and be on the first floor closest to the front doors.
3. I am lucky I have FIMLA but with PPMS and active flares kind of the norm for me the numbered days do not fit my disability. To work all day can be a surmounting event and cause my nerve pain at night to soar to the point I am exhausted and the vicious cycle continues.
4. The go-carts in the store most often are not charged enough so half-way through the store they begin slowing down to the point I am faster. Just my legs tire to the point I cannot stand trying to get back to the front. I raced a drunk snail against one and won.
5. I am not disabled I have a mate called MS that is adventurous, just most days we are at odds with each other. I did try to find a divorce lawyer but funny no laws about divorcing MS. And this mate is expensive, intruding, abusive and rude. I guess I am stuck with my MS mate.
6. ATM machines usually have a curb to climb before you can use one…and the handicap parking is like way away from the machine. It is those little annoying miss-understandings that just drive me insane. It is these little annoyances that really take my independence away when I am having a good day with my MS mate and the urge to try to be normal.
7. Employers want you to work 5 days a week 8 hours a day. Try telling that to my MS mate as I try to pay the basic bills with the little income.
8. SSI wants me on my death bed before I qual for any help. After all I can work as long as I am willing to be physically exhausted after 5-10 minutes of walking. Sometimes I am on short-term disability but…I am making an income so therefore I cannot qual either. But you can only do this so many times before the employer and insurance companies start making funky noises at you. After all I am doing it on purpose because I really love feeling useless and unreliable.
9. Dang how can the medical world tell me they are on the road to a cure and yet cannot with defining words say what causes MS? Stop teasing me it is wearing me out.
10. Oh by the way, let us make medication long complicated words no one on earth that lives with MS really understands. Let us not even try to spell it. I just want easy terminology so I can make an informed decision on which evil path to take. Or supply me with an interpreter which I doubt is covered by medical insurance companies for medical terminology. My mind tells me the truth is hidden in those complicated terms.
11. Oh the nightmares I have on the treatments for MS. They help but the risks are high depending on the individual. So my MS mate drives me to play spin the wheel on my health and hope I land a winning hand.
12. No one can understand sneezing and your pants being wet and trust me there is no pad that can manage the results. After all I am pushed into drinking tons of water to keep hydrated. Yet, tell the doctor about the sneezing issue and you get do not drink so much water. Big help that one is. Chung-Ching pay the 40 dollar co-pay. What a demeaning way to treat a patient. What gets me most is the specialist charges 260 bucks and hour and I am lucky if I actually have face time of about 15 minutes, oh do not tell me about paperwork, the doc is typing into a computer.
13. Yeah there are laws about disability. However, sometimes/most times it does not apply to me, I fall into that grey fuzzy fog, after all my MS is very unpredictable and not keeping me totally down all the time. Yet, there are those that are disabled beyond human belief and I applaud their daily confrontation to survive their MS mate. Somehow I fall in that no-one understands zone as after all I am faking my medical dilemmas because tomorrow I might be able to manage a shower and get to work, or not. All I can do is try my best, but predicting the outcome is anyone’s guess.
14. Sleep without pain is possible drugged up, however, my MS mate still jerks my legs around waking me up. I think my MS mate is jealous I am sleeping.
15. So the understanding of those not in the nursing home or hospitable bed is just not there or even a winker of understanding. While there is understanding until the MS mate is not allowing me to conform to the norm of the working world or society standards. There are pockets of people that do understand and do try to understand, but those pockets are very few and not long lasting in support.
16. I have shower/tub that most times I cannot get into. Get a walk-in shower is impossible on my limited budget (Keep in mind my Credit Card is tanked due to medical bills.) I guess the egg on my head in the ER, from falling in the tub, is not worthy to steer me to safety. May be when I get rich and famous I can have one installed. Anyone find a money tree yet?
17. Oh and the smoke alarm is out of my reach to put in a new back up battery (I am banned from step stools and ladders due to my imbalanced teapot.) Why cannot the sensor be up where it needs to be but the mechanism be lower so I can independently put a new battery in?
18. I really do not have the right to complain about these small little endeavors as there are those worst off, but some days I really do wish it was over. I know there is counseling but I cannot afford another co-payment with the other entire specialist team that helps me to wrangles this MS mate.
19. There are dogs for the blind and dogs for the hearing that the laws support, but little support for dogs that smooth the emotional turmoil over. My dog, bless her heart if it were not for her I be pushing daisies up. She reminds me daily that I am more than just MS. The laws just do not understand the importance of this little comfort. I wish I could take her everywhere I go because when I hit one of those curbs, I am sure she will look at me with eyes that say what is the big deal Mom?
20. Trapped in my house most days as I cannot drive or take a walk down my neighborhood. I get a little cabin fevered after a few days.
21. The list can go on, and I hope some reading this will recognize a little of themselves and know they are not alone. MS is more than a disability it is a silent striping of one’s identity. I fight daily to remind myself that I am more than MS, that I have purpose despite my blurry vision, that on some days I can maneuver that curb, that one day there will be a treatment that will not destroy my liver or some other important organ, that wetting my pants is just a funny little reminder what old age will be, and most important that I do have purpose; my dog needs me.
22. They say that aging is not for the whimpy. But MS and aging is not for the weak either I have come to learn, a lesson I could do without. I just hope old-man God wakes from his nap and shines on me some day.
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