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zebra-warrior · 4 years

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Five things I'm greatful for and then some.

1. My parents. I honestly couldn't ask for a better set of parents than I have. As a kid we didn't have much money. My parents wanted to purchase a nice house to raise me in so I had the best environment to grow up in possible but in choosing the home they did everyting else was very tight but they never made it feel that way. Back in the day when crafting and building things were less expensive than buying them (boy have things changed with crafting) if we didn't have someting they would make it. I remember a lot of my friends would have birthday parties at places like Chuck E. Cheese, Magic Mountain, the Zoo or a skating rink. My parants didn't really have the money to do that and what they had they would have rather spent on a nice present for me so my mom would decorate the house and my dad would go out and mow the grass really short. They would dig holes in the ground and put PVC pipe in the holes that my dad would get at work from the dumpster and turn our back yard into a put put course. They would put up a vollyball net and crochet set and we would use big workshop vice grip clamps and turn them upside down as putters. The house they bought already had a swing set and swimming pool so I would have pool parties and with magic mountain in my own back yard. It was a lot of work but not a lot of money even though to me it felt like they spent a fortune. Everyone always looked forward to my birthday parties as a kid. They were always a bit hit. Not to mentuon sidewalk chalk was someting they also would splurge on so setting up the driveway with lots of fun stuff was something my dad liked to do. He used to like drawing with chalk as much as I did. As I got older they always made things work. When I began getting bullied at school I was switched to a private home school coop. Which my great grandma who was also the best grandma ever paid for knowing my parents couldn't and she couldn't stand seeing me hurt the way I was but my mom would drive me 35 minutes to school, drive almost an hour to work then after work wound drive almost an hour to pick me up and then 35 minutes back home every day for 3 years until I got my driver's license. She was so excited for me to get my license she took me a month early for my T

temps. I told her it was too early and she said it wasn't and whan I got there they said come back next month lol. I never wanted to drive. I was always afraid but she couldn't get me to the BMV fast enough lol. My parents also taught me a lot about the value of money and work ethic and now say they taught me too well because I'm known to shop for several months for something more costly that I need like contact lenses in order to find the best price, all coupons and all rebates and sales available. I got my first job at age 11 and was able to buy my first car myself, pay for college myself without taking out one loan and buy my first home outright and as a foreclosure to remodel and fix up how I wanted it to look. My second car was the only thing I've ever taken out a loan on. When I got sick and OSU tried to put me in a nursing facility my parents offered to help me sell my house and take me back in with open arms so I could be cared for in their home instead of a long term care facility. They still help me to this day cooking for me, driving me to appointments when I can't use transportation services, cleaning and helping me bathe myself. I now pay them rent and utilities as well as half of groceries and personal needs of my dog and myself not because I think for a second they would dump me into a long term care faculty if I didnvt but because it's the right thing to do. This ties in with family but I'm so very greatful and thankful to still have my mom. She was on life support after having her liver cut into during a botched surgery which resulted in a full blown liver rupture. It was the hands down the scariest moment of my life. We weren't sure she would make it and her doctors couldnt even give us that reassurance but she did everyting ahead of schedule and all I had to hold on to was her promise that she wasn't going anywhere. She kept that promises and on the day she was released the nurse that called when she began crashing came into the room shocked she was alive and admitted that she was sure my mom wasn't going to make it and that was the end for her. She was completely amazed my mom was still here. My mom was caught in the battle of her life, a battle she should have never had to fight and now has PTSD because of the experience but she's alive. My mom is here. I know a lot of adults have already lost a parent and I can't imagine the pain. Having my parants bring really the only family members I have a close relationship with and being my caregivers, I don't know what I wouls do without them. I would probably be in some nursing home somewhere without them. With my dad has Autism, though he was able to work, my mom paid bills, did most of the shopping as my dad can't use a debit card. But my mom does most of the money, paperwork and phone call related stuff for him so I can't imagine how life would even be able to continue without her. Or my dad. They both have two totally different rolls and being disabled I need them more than ever so I couldn't be happier this is in the past but couldn't be more upset or had to happen to begin with. In Ohio doctors are protected against medical malpractice and though she almost lost her life and will have life long physical complications and likely somewhat shorter of a life due to these complications she will never get the revenge she deserves and the doctor didn't even get a slap on the hand for what he did to her body and with now having PTSD, her mind.

2. Maggie: This dog has rolled with the punches and adapted flawlessly. She's my best friend and fur daughter. She picked up cardiac alert from my last baby Sandy and took to training to be able to use that ability as a career line a champ. I have seen her blossom from the puppy from heck. (no offend Ma-mag) but she would literally rip wallpaper off the wall with her teeth, it took 8 months to housebreak her and there was no such thing as no in her dictionary. She got into everything but I've since learned that was only because she was so intelligent and always curious because once she began training she excelled and grew into the most trusting and obedient dog I've ever had. Not only that but she thrived on structure. When working she walks on the leash beside me just fine but when I put her on my lap at that point nothing can stop her. She sits up all straight, sticks her chest out and thinks her poop doesn't smell. My lap is her thrown. I don't mind because she can alert just as well up there as she can waking, if not better because she doesnt have to try as hard to get my attention in loud and busy places. Not only is she obedient but when she's not formally working, even at 8 years old she's still very playfil and silly, always doing things to make me laugh or my heart melt. She's a velcro dog so I've always got a snuggle buddy and someone to keep me warm and my face coated in a layer if dog spit lol. I got her the day before I got my first pacemaker and she was the first one to sit at my bedside when I came out if surgery for my second one. As I went from a much closer to healthy individual who would take her on long walks and when stuck in a terrible relationship I would walk she and Sandy some days for several hours a day, sitting around the pond eating snacks, going into every store in walking distance that allowed pets and exploring the neighborhood to much sicker, in a chair with her only real walks occurring when she worked outside the home and a much more stagnant lifestyle Maggie never loved me any less, if anyting she loved me more because to my surprise she fell in love with my wheelchair and head over hills for my powerchair. When I turn my power chair on it makes a chiming sound and whan she hears that sound she makes a mad dash for the room I'm in begging for a ride. In her mind these changes in my life had made me no less the mommy to her as I was before. She is one person (yes I will call her a person) who I can count on to always love me no matter what. If it wasn't for her, I don't think I woukd he here. This conditon has made me want to go to bed and not wake up more than once and she's saved me every time and I can't thank her enough for being such a good girl.

3. My neighbor Pam has been my neighbor since I was 5 years old so she's been in my life most of my life and much more than any family member outside my household has ever been. She's basically my aunt or a second mom to me. As a kid she helped in reaching me the value of money and hard work my giving me my first two jobs at age 11. She has me clean her primates cages and prepare food for them not only teaching me the values of good, hard work but further fostering my love for animals. She's always had the primates as well as dogs and cats I would take care of when she was out of town. I was the first kid I knew to have a real job even if it was part time. It wasn't much later that I began babysitting her grandson who even now that he's grown and I no longer talk to him, I think if him as a little brother to me. He was the most well behaved kid I ever babysat and boy was it an eye opener when I started babysitting a lot of other kids in the neighborhood and saw how some kids can really act lol. Pam has always been there for me and my family. She would take me on summer trips sometimes like I remeber a trip to Wyndot Lake that really was a blast and she has always treated me like family. We have a key to her house and she has one to ours. When I got to the age I could stay home alone I never woried too much about if I couldnt find my key or the screen door was locked because I always knew she was just a short walk away if I needed help. She watchs our houses and we watch hers contacting each other if we see anyone or anyting unusual. She comes over each year for Christmas dinner and will occasionally surprise my parents by bringing over a soup she made or some cookies she baked and last summer sent a Chimney Sweep to our house because she knew my mom needed a break and we like to have fires in the winter but haven't had our Chimney cleaned in a while. For my 16th birthday she took my awe dry car to her business at the airport to clear coat it with the same material used to clear coat jets and whan I got sick I didn't have to worry because she is always nearby. Before I got transportation services she was always willing to drive me to my medical appointments and with Corona, she helped with shopping. Over the summer we could pick anyone in our family to go on a trip to the zoo with us my dad's last year of work and we chose my neighbors and had a great time. We may not be family by blood but my neighbor is my family. Not many people are lucky enough to have a neighbor they get along with or even care for yet ours is closer than extended family and for that I'm thankful.

4. My home. I couldn't be more lucky when my parents bought this house. It's almost as if they knew that when I grew up I would be in a chair. We live in a one story floor plan with a kitchen. That has an island in the middle so if I have someting I hand its still easy to just grab the counter and zip around in a circle to any part of the kitchen I need to get to. Before the passing of my grandma, she used a walker and wheelchair so my dad had already installed a ramp in our garage so I went into this journey with access to my home. My home is also set up so my dad found easily set up a ramp onto the back porch. I have always had a large bedroom, bigger than most people I know. It's similar in size to a master bedroom and being in a chair, thats very much a necessity now. In a chair you need a lot more room to navigate an area efficiently. Of course my home is far from perfect. The bathrooms are much too small to be truly accessable so I have to make due with what I have and my bathroom. Needs despiratly to be remodeled. Unfortunatly the bath tub that was put into my bathroom could quite possibly be the most unexcwssable bathtub for someone in a wheelchair in existence. I don't have a pull down closet nor do I have pull down cabinets in the kitchen or appliances I can easily use. I don't have a stove that rises and lowers or countertops that are at my height it an elevating powerchair to be able to reach those areas. Even the microwave is a Hazzard but as far as manuverability we have that. I can access every too. In our home except our basement and one part of a bathroom we have. It would be easier to menuvour here if my parants didn't have so mucb stuff and such big bulky furniture it I think that's also part of living with my parents. They have more life experience and more stuff but it's doable. Not everyone is lucky enough. After becoming disabled to have a home that's usable or has porential. Many were forced to move after getting sick or disabled. I was forced to move out of my home but my parents home is usable and I can't be more happy for this home.

5. Doctor Joseph and his staff. I went 30 years of my life unable to get help for this condition slowely robbing more and more from my body. When I came across Dr Joseph they were something I had never seen in the medical community. This was all new to me. I entered into a facility of four of the most caring and compassionate individuals I've ever encountered. I finally found a doctor who specializes in my conditon and he was just over a half hour away. But only was he familliar with the disease but also the comorbidities, Misconceptions, PTSD we have all faced from others who hold some form of medical degree and how we likely have no one to advocate for us and we have been on our own literally fighting through the pain and suffering. For appropriate medical treatment to only be dealt more pain and suffering. When he took me on I was the sickest I've ever been in my life and I so much pain I frankly can't believe I hadn't taken my life much before even hearing about him not only did he take me on as a patient knowing how big of a project I would be after over 200 doctors in the past saw me and just pushed me off but he never gave up, hasn't given up and I don't see him giving up on me in the future. His staff has fought tooth and nail with insurance companies on my behalf, files formal complaints about hospital care for me, brought me in on days they were fully booked to try to help me and spent weekends and holidays on the phone with my mom and the hospital angerly fighting with them to do the right thing and provide appropriate care. They may have not listened to him, learned to hate him and failed me terribly but at least I can't say my doctor and his staff didn't try. His wife came in on her day off to fight with my insurance company and they have helped me find the right goverment officials to contact with problems. The goverment officials may not have done anything but again, at least I can say they tried and that says a lot about a doctor. I. Not on the best treatment and the battle still continues to get me into a surgeon, gst testing completed and fight for more than the fifth or sixth best medication. They treat me no different than they would treat their own family members and that is something I've never seen in a doctor. I have seen improvement. It may not be as much as they would like but every bit of improovment is because the continue to fight to me, continue to teach me to advocate for myself and refuse to give up on me just because I'm a complicated case. I couldn't thank his office more for what they have done and continue to do each day.

I know that's five but just to list a few, I'm thankful for my late dog Sandy, my late Great Grandma, nature and other non harmful animals that cross my path, my local church, my online friends and the availability of support groups, the internet, with the virus I'm thankful for the new door that has opened for those of us who are homebound with all of these vertual tours and other New online resources that open the world up to us from our beds and couches, that I still have my mind, my manual and powerchair as I would have no way to access anyting, including my own house without them, the nice days after the ground has dried up and I'm able to roll around my yard and around the garden. To re-establish a love for crafting. My cricut and sewing machine and mich more. So just because there are things I'm very upset with in this world doesn't mean there aren't things I'm thankful for.

#myEDSchallenge #myHSDchallenge

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