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Tis the season!Another holiday season is upon us. No matter what or how people choose to celebrate, the holidays often cause at least a little stress for most. Whetheritis tackling the chaos of Black Friday to get the best deals, waiting for hours in airports for delayed flights, spending hours trying to get the decorations just perfect, or cooking for hours on end, this time of the year can often bring on added stress.For people with disabilities, its no different.As a matter of fact, I read an article awhile ago about how the holiday season can often be more stressful for those with disabilities and even cause some depression.As I get older, I couldnt agree with this more.
Ive written before about how just because I have a disability, I dont see myself any different.I shop for gifts.I decorate my apartment.I send out Christmas cards.Sure, I need assistance completing these tasks, but I enjoy doing these. For years now, my mom and I have had the tradition that we shop on Black Friday. We look through the ads, make our lists, and plan out where were going the night before.Many times, we often arent even after the doorbusters or anything.You see, since I live on my own and because, for various reasons, I dont have the opportunity to get to the mall and other stores unless Im with my family, I usually do most of my holiday shopping on Black Friday.Yes, I do some shopping online, but I really enjoy getting out.It has become a great tradition for Mom and I.
This year, instead of having one of my care givers help me decorate my place, I asked two of my friends to help me.They were former care workers and are now friends.They came over, had dinner with me, and helped me decorate.We had fun laughing and catching up.I dont get opportunities to socialize very often, so it was fun.I admit, I felt guilty when I asked them if theyd be interested in helping me because I never want to seem like Im using my friends. Ive learned over the years, though, that true friends dont mind helping me.
As always, I will be going to my parents for the holidays.Ill spend over a week with them.During that time, Ill get to see friends and family, go out to eat, shop, and be social.I know Im incredibly blessed that my mom and dad are still able to take care of me.There will come a time when that wont be the case, and I might have to spend the holidays by myself.That saddens me. I know my sister will always try to include me in her life, but I never ever want to be a burden to her.As the years go on, those thoughts cross my mind more and more.
Im big on traditions.My family doesnt have many, but I like the ones that we do have.Over the years, they have had to change.My sister has moved on in life.Currently, she lives out of state and has a significant other.Shes coming home for Christmas this year which Im excited about, but, like we have for a few years now, my family will have to share her.Shell split her time between our family and her boyfriends family.Even though, I really approve of (Im the big sister) and have come to love her boyfriend, Im still not used to having him around all of the timeespecially over the holidays.I know its a normal occurrence in life, and Im truly happy for my little sister; its just hard sometimes because I know that its very likely something that Ill never experience.
Same goes for family get-togethers over the holidays.As Ive mentioned before, Im the oldest cousin on both sides, so when I see my younger cousins dating, getting engaged, getting married, and having babies, it can be hard.Again, its not because Im not happy for themI amit just can be very difficult to witness because its something I desperately want, but probably will never happen due to having severe limitations. Im not giving up hope; Im being realistic. When I have moments during family gatherings, I try to sneak away to a private area for a few minutes to compose myself.My mom, dad, and sister understand my feelings and do their best to console me and bring me back to the festivities.Im pretty good at seeing happiness through other peoples eyes, but, sometimes, I admit, situations can be too much for me to handle.
The holiday season brings different kinds of stress for everyone.There are many different ways to deal with stress.For me, personally, I find it helpful to remember all things I do have and think about all of things Ive accomplished despite my disability.Admittedly, sometimes its really hard to do, but we need to focus and make the best of what we do have; not dwell on what could, would, or should have been.All the time, but especially during the holidays, we need to take a moment to be grateful for all that we do have!
I wish all of you happiness, hope, and a time to think of all the ways you are blessed and have blessed others!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Growing up, I rarely thought of myself as having a disability. Much in thanks to my parents, I was treated as normal as possible. Obviously, my disability was (and still is) evident in many facets of my life, but I grew up learning not to dwell on it. I couldnt use it as an excuse. Sure, things like regular therapy sessions, wheelchair appointments, school IEP meetings, and occasional telethon appearances were part of our routine, but that was just the way life was for us. My family never sent me to respite care for weekends. I never went to any camps for people with disabilities. I certainly could have done those things; instead, my family chose to include me in vacations, outings, etc
When I was really young, I received Birth to Three services, and I was in Early Childhood classes. From Kindergarten on, though, I was in all regular education classes. With the exception of pull-out therapy sessions and a couple modified gym classes, I was in classes with my peers. I had accommodations as needed, but I had the same expectations as everyone else. Classmates came to see past my limitations and treated me just like other kids. At UW-Whitewater, it was a really different environment because so many students had disabilities, but, yet, the majority of students didnt have disabilities. Im not sure how to explain it, but I felt just like one of the students there as well. In other words, I didnt feel singled out most of the time.
It wasnt until after I graduated from college that I really felt the true impact of my disability. I guess one could say the real world hit me hard. Everything from finding an apartment, to finding cares, to finding employment, my limitations seemed to get in my way. As always, though, with help and encouragement from my friends and family, I persevered and fought until I reached my goals. Thats still true today. Giving up isnt an option in my world because I have set pretty normal expectations for myself regardless of my disability.
When I found out InControl Wisconsin was going to be an exhibitor at this years Self-Determination Conference, I was so excited! My mom made arrangements to take off work so she could go with me as my caretaker. We were there Monday through Wednesday. I had been to the State Transition Conference as a presenter a few times before, but this was my first time going to the Self-Determination Conference. I was very impressed with all the different activities and sessions they had. For me, personally, the section about the ABLE (Achieving a Better Life Experience) Act was particularly interesting. Once the regulations are in place and it takes effect in Wisconsin, it will potentially change the lives of many people with disabilities. Being able to put money aside for essential necessities without losing benefits will be so beneficial for so many people. It was very interesting learning about it.
It was great reconnecting with many friends and meeting so many new people at the conference. I really enjoyed meeting so many people that Ive communicated online with. That was awesome! It was also amazing to see so many self-advocates come together. I kept thinking of how impressive it was to have so many people come together to support people with disabilities. I had a great time networking! By the third day, though, I had to keep reminding myself I was there for my job.
You see, Im not used to focusing on my disability 24/7. Even though, I work in the field now, I rarely think of myself as being a person with a disability. Its not that Im ashamed of itIm totally notI just dont normally draw attention to it. Obviously, since the conference was all about people with disabilities, I couldnt help but focus on how my disability affects my life. It wasnt a bad thing. In fact, I learned a lot of valuable information and got some helpful ideas that I hope to use in my personal life. It was just that I had never experienced three full days where I mainly focused on my disability before.
Yes, I was there for work, but, at something like that, you cant help but think of your personal life. By the last day, I pretty much had had enough. Though, the conference was great and it was terrific networking with so many people, I was tired of focusing on my disability. On the way home, my mom and I had great conversation about this. I told her that I felt like I wasnt a great advocate because I dont like focusing on my disability all of the time. She reminded me that I am a good advocate because I continue to fight to make my life as normal as possible. She explained that the main reason I felt like that is because our family never has focused on my limitations, and shes right.
It was certainly an interesting few days. I am really grateful I got to go to the conference. It was a great opportunity for me to network with lots of people and share information about the Networks. While, sometimes, its helpful to attend a conference about a topic to gather information and network with others, Im thankful that my life doesnt revolve around my disability. I love working for an advocacy organization and being part of various advocacy efforts, but I have other interests as well.
Do I still consider myself a strong advocate for people with disabilities? Absolutely. Are there others who advocate better than me? Of course, there are many! We each do what we can, and together we make things happen for people with disabilities!
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Change is hard on everyone. People say transitions are harder on adults. I have heard that change is even harder for people with disabilities. Maybe its because Im older or maybe its just me, but over the last couple months, Ive realized just how true these statements are.
Ive shared that Ive been an IRIS participant for over six years now. I love being able to self-direct my budget and make choices about my life. In fact, I believe everyone should have the option to self-direct. When I was living with my parents in Fond du Lac after college, we tried to find care agencies that would bill Medical Assistance for personal cares. As I explained in a previous journal entry, that didnt work. Agencies could not staff my shifts. My IRIS consultant at the time suggested I switch to Self-Directed Personal Care (SDPC), so I could hire my own staff. There was a waiting list for it, and by the time I got on it, we had heard that an apartment had become available in Oshkosh. I didnt realize it at the time, but we were very fortunate that the care agency associated with the apartments billed SDPC. So, until I moved in, I just hired my parents to do my personal cares (they obviously had been doing them anyway).
Things had been going so well with the care agency for four and a half years. Sure, there were ups and downs and bumps in the road, but, overall, it had been going very well. Over the last year or so, my IRIS consultant and nurse had been telling me that changes to SDPC and that we may have to make some changes. The change was that SDPC was no longer going to allow third party vendorsthey were only going to allow people to hire their own staff. I knew this wasnt a feasible option for me, but I wasnt too concerned because I thought the agency I had was a Medical Assistance provider. So, when I got a letter in the beginning of July saying this was indeed true and that I had until October 15th to make the switch, I wasnt overly concerned as I thought I could just switch back to Medical Assistance for personal cares and keep my agency. I setup a meeting with my agency and my IRIS consultant and nurse for mid-July. This was when we found out that the agency wasnt a Medical Assistance provider.
This meant I either had to find my own staff or find a care agency that billed Medical Assistance. Unlike many other IRIS participants, I dont ever want to hire family and friends to be my primary caretakers. It just doesnt sit right with me. For some, its a great option, but thats not the case for me. I also know I could hire out myself by advertising in places such as newspapers and online, because of the amount of hours I need and various other factors, this isnt a feasible option for me. Therefore, I had to find an agency that billed Medical Assistance.
Thankfully, right after the meeting in July, my parents and I got on the ball right away and setup an interview with an agency that was a Medical Assistance provider. We met with them in late July. It was decided Id go with this agency. The agency had to hire multiple people to cover my shifts, so we knew itd take awhile to setup. After many stressful weeks trying to figure out what was going on, I finally started with the new agency last week.
Most people don't understand the gravity of changing agencies has on me, but it's truly life-changing for me. I kept asking my mom how I ever started at UW-Whitewater. She said, "Stac, you had no idea what you were in for," and she's exactly right! Switching care agencies means starting over with all new people and learning a whole new set of rules. Care agencies try to prevent clients and workers from becoming friends because its not ethically correct, but its almost impossible not to become friends with the people taking care of you. Theres a certain trust factor when it comes to personal cares. I have to get to know and train all new people. This is not an easy task for anyone, but its especially hard when youre non-verbal. I typed out detailed instructions for each care shift, but even with those, I have to get used to each new person and vice versa. Its pretty stressful and exhausting!
The change not only affected my life; it affected my parents life as well. They had an out-of-state trip planned in October. Since I was going to be with a new care agency, my mom and dad didnt feel comfortable leaving me behind. Originally, I was going to go with them, but, as the start date got pushed further and further back, we realized that cancelling cares for over a week right away probably wasnt the best idea. In the end, my parents decided to stay closer to home in case Id need anything. Im grateful for their sacrifice.
While personally I dont understand or agree with the third party vendor rule (I dont know how limiting who we can hire is self-direction), Ive accepted it and moved forward. Change, whether its big or small, isnt easy for anyone. We have to learn to adapt and move forward one step at a time!
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Here it is again. The end of summer. The beginning of fall. Like many people, Im a fan of the warm weather and hate to see it go. Fall means the beginning of football season which admittedly, I love. However, I always get a pit in my stomach during the first few weeks of September. It isnt because Im dreading winter or Im nervous to see how my favorite football teams will do.
September means the beginning of another school year in Wisconsin. I see my friends who are teachers post about their preparations, excitement, and nervousness of the first days of school on Facebook. Other friends post stories and picture of their kids first day of school. I understand these are perfectly normal things to post. The reason for the pit in my stomach is because I see teachers are back doing what they loveteaching.
You see, teaching is in my blood. My mom has been an educator for over 30 years. I have an aunt and uncle who are teachers, and many, many of my friends are teachers. If I didnt have severe physical limitations, theres no doubt in my mind that I would have been a teacher. I love kids and I love helping them succeed. Its just who I am. I likely would have been an elementary teacher or special education teacher. Im not sure if my interested in special education is due to me having a disability or notit likely does.
People who have disabilities can certainly be teachers. In fact, a few of my friends who have disabilities are teachers. For me, though, it just isnt a feasible option. Even with accommodations, it would be very hard and wouldnt be fair to the students. I would never want to provide children with anything less than a great educational experience and I know I physically wouldnt be able to do that.
As hard as it to accept, Ive found different ways I can teach. I had a great opportunity to be an online mentor for students with disabilities for a few years. I helped them through online modules and was able to share some of my experiences with them. I also make presentations about disability awareness and about my life to many groups. Ive presented to kindergarten to college classes and to every age between. Doing these presentations makes me feel like Im teaching. Ive also realized that Im teaching others when I post things on the networks.
Although, Im not sure that the feeling in my stomach each September will ever go away, Ive found ways to feel like Im teaching and helping others learn. My hope is that Ive made a difference in other peoples lives!
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Its pretty unusual for a 30 year old to say that their parents are their best friends, but for me, this is a true statement. Yes, I realize its not close to Mothers or Fathers Day, but, due to several things that have been going on the past few months, I find myself reflecting on just how true that statement is. My mom and dad are my best friends. Im not really sure if this common among adults with significant disabilities or not, but Im so fortunate to say, for me, this is 100% true!
Since I was the first grandchild on both sides of the family, my traumatic birth (which resulted in me having Cerebral Palsy) sent a scare through the entire family. Seconds after I was born, my parents realized their lives would never be normal again. Although, they didnt know the severity and impact of my disability until months and years later, I cant fathom how scary my birth must have been for them. I realize my mom and dad could have easily given up on me right then and there, but, instead, they chose to take on the challenge of giving me the best life they possibly could.
There are far, far too many examples to share, but my parents have done everything they can to make my life as normal as possible. They have adapted so many things in order for me to partake in so many activities that I otherwise would not have been able to. Everything from adapting sleds and swings, to chaperoning school field trips and dances so I could attend, to giving me chores and punishing me just like any other kid, to driving me around and being my assistant so I can partake in various social events, to fighting insurance companies, to attending countless therapies and medical appointments with me, to building an accessible house and buying wheelchair accessible vans the list goes on and on. As I mentioned in my last journal entry, thanks to my parents, travel has been a big part of my life. Mom and dad have said that they feel its their responsibility to show me as much of the country (and beyond) as possible. As I get older, I realize how lucky I was to have been able to see and experience so much when I was younger.
Weve had many conversations in the recent years about my disability. I find it interesting that they think the early years were hardest. Obviously, my birth was dramatic for them, but I think it was hard on them watching other kids who were younger than me progress physically, and then having to explain to me why I wasnt able to do those things. I also think it was hard for them to deal with peoples reactions. As I got older, mom and dad taught me how to deal with peoples reactions to my disability.
When I graduated high school and entered adulthood, I think my parents feared what would happen to me. As much as they encouraged me to attend UW-Whitewater, I know they had doubts about me being able to make it on my ownespecially my dad. It took a couple months, but it was a huge relief for them when they realized with the right supports I could live on my own. This relieved them because they then knew that after they are gone, I would physically be all right without them.
Even though, I live on my own in Oshkosh now, I still depend on support from my parents a lot. Although, I try hard to deal with as much as possible on my own, my mom and dad assist me with quite a bit. Whether its dealing with a wheelchair shuffle (like this summer has been) or dealing with care issues, theyre always right there to help. I cant even begin to list all of the things that my parents still do for me.
Having said that, I think the most important thing they do is be there emotionally for me. Its not easy to admit, but, as strong as I try to be most of the time, sometimes I have moments. As hard as I try to see happiness through other peoples eyes, sometimes it can be really hard to witness my younger sister, younger cousins, and my friends experiencing those normal milestones in life knowing its very unlikely Ill ever reach them. Things like watching others date, get married, and have babies can be very hard. Its not that Im not happy for themI amits just hard accepting that those things may likely never happen to me. When Im having those hard moments, mom and dad are always there for me with an ear to listen and a shoulder to cry on. I also have a hard time when things related to my disability get in the way of my life. Together we work through those rough patches, and weve learned to rejoice in the small milestones that I reach that may seem insignificant to most people.
So, yes, Im very proud to say that my mom and dad are my best friends. Thanks to their continued abundance of encouragement, support, and love I am the person I am today. Im so blessed to have such great parents!
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
For most working adults, going on vacation is something they look forward to. Im no different. For people with disabilities, travelling can have some unique challenges.
Growing up, I was very fortunate in that my family traveled a lot. Ive been fortunate enough to have been in about 40 out of the 50 states in the US and Ive been to Canada and Mexico a few times.
Traveling when you have a physical disability can present many different challenges. From simple things such as finding an accessible restroom to dealing with places where there are only flights of stairs, traveling anywhere when youre in a wheelchair can be pretty interesting.
I have both a power wheelchair and a manual wheelchair. I use my manual chair when we go to relatives houses (because theyre not accessible) and when we fly some places. When I was a lot younger, we used my manual chair a lot more than we do now because it was a lot easier for my parents to move me around because I was smaller, and I was young enough that freedom wasnt an issue. Now, when I have to be in my manual chair for any length of time I cringe. When Im in my manual chair, Im completely dependent on people to push me everywhere. As much as its an inconvenience though, I wouldnt have been able to go to half of the places Ive been without it.
Though thanks to the ADA, accessibility in the US has immensely improved over the years, its far from still perfect. One of the areas that still needs improvement is airline access. Most airlines have accessible jet ways now, but wheelchairs still cant fit on the plane. The aisle chair they provide to get onto the plane is so small and little, that most people in chairs can hardly sit on it. Generally people in chairs, like myself would much rather be able to take their chairs right onto the plane, and get buckled down there. Theres also the issue of getting an accessible van if the person wants to bring their power wheelchair. Its nearly impossible to find a rental place that has a van with a lift. Thats why when we flew when I was younger, I always brought my manual chair.
However, a few years ago, I discovered a friend from college always flew with her power wheelchair. I approached my parents with the idea of flying to Las Vegas with my power chair. Vegas is a perfect city to fly to with a power chair because you dont have to rent a vehicle. Everything is pretty accessible and accessible cabs and buses are readily available. We flew there with my power chair a few years ago, and it was awesome! It was so much easier on my parents not to have to push me everywhere, and I obviously loved the freedom and independence it gave me.
Recently, we flew to Vegas again with my power chair. I was so excited for this vacation. It had been awhile since I had been away, and I was really looking forward to being able to use my power chair again out there. That excitement quickly ended as soon as I started driving my chair off the jet way in Vegas. Something was messed up with the joystick (the controller). When the airlines put my chair in the storage, they werent careful and likely grabbed the chair by the joystick wire. It would go a couple feet and then abruptly stop. It progressively got worse throughout the day. My parents and I soon realized that this wasnt going to work all week.
Fortunately, we were able to rent a manual wheelchair from the hotel and buy belts to hold me in. We called the airline to report the damage, and they had a wheelchair repair company come get my chair. They ordered a new joystick and had it overnighted. For some reason, however, the repair company was unable to program it. They returned my chair with the new joystick in a bag. We had to drag it all the way back through the airports when we returned home with it not working properly. As soon as we got home, we took my chair to our wheelchair place, and they had the joystick hooked up and working within a matter of hours. While the airlines did pay for the wheelchair repairs and the rental of the manual chair, it wasnt much of a vacation for my parents or I. I felt extremely bad for mom and dad because they had to push me everywhere in that extreme heat. They felt bad for me because I basically lost my independence for the week, and they knew how much I had been looking forward to the trip. We made the best of it though.
We wrote a letter to the airlines explaining the trouble we went through. Were waiting on response back. The guy from the wheelchair place in Las Vegas told us that airlines set aside three to four million dollars per month for wheelchair repairs like these. Now, what does that say? I think airlines need better training on how to handle special needs equipment. They need to understand that medical equipment is not just more luggageits items that peoples lives depend on!
I think it may be awhile before I fly with my power wheelchair again, but, hopefully, someday I will. Regardless of the challenges, thanks to my wonderful parents Ive been to a lot of places and experienced more things that many people will never be able to. And for that, Im very grateful!
What travel experiences have you had? Share them with us.
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
For many adults, being spontaneous is a part of life. Most people dont even think about what time they're going to bed that night let alone what they're going to have for breakfast the next morning. For people with significant disabilities, being spontaneous often isn't an option.
I've always been an organized and on-time person. If I'm late for something, people know something is likely wrong. Some people think Im overly punctual, but time management is crucial for me. Since almost everything takes me a little longer to accomplish, I have to be a planner. Fortunately, I always have been pretty good at this.
Since I depend on people for all of my basic needs, I have to plan out almost everything I do. From the times I roll out of bed each morning, to the times I use the restroom during the day, to the times I eat lunch and dinner, to the times I go to bed each night, everything has to be done at a scheduled time because people have to come help me. I also need to make sure that during each shift I have the aide do whatever I need until the next shift. I always have to think ahead to make sure Im prepared. Since I'm primarily non-verbal, each night, I prepare three or four Word documents for the next day explaining what I want done on each shift. I type out what I want staff to prepare for each meal and what I need them to do.
In college, most students could do a five page paper an hour before class and do ok on it or pull an all-nighter when a big project was due. For me, it wasn't that easy. Before each semester, I had to look at my class schedule and make a schedule of the shifts accordingly. Most of the time I didn't mind it because it forced me to keep a strict time schedule, but, sometimes, it was a pain if I had to meet for a group project or just wanted to go to bed earlier or later one night. Since most coursework took me at least twice as long to do then the normal student, I had to plan out enough time to complete assignments. If I needed physical assistance with homework, I had homework aides who would come help me. That also took some coordinating. Unlike many college students, I tended not to procrastinate. When I got an assignment, I got it started as soon as possible. Usually, if I had something due and if it wasn't done at least a day before hand, something is wrong. Even if I had a couple of weeks to do it, I got it started right away. My friends thought I was crazy for doing things so far in advanced, but I had to be on top of things.
Now that I'm working as an independent contractor, I set my own hours that I work. Although I'm getting better at pacing myself, I still tend to do all the work I can as soon as I can. Maybe it's my personality, but if I know there's work I need to complete, I have a hard time relaxing. Its just the way I am.
Living on a rigid schedule has become the norm for me. My friends and family understand that if they want to do something with me, I need to know well ahead of time so I can let my staff know. Although, I enjoy getting a break from my routine when I go away for a weekend or go on vacation and have family take care of me, it often throws my body out of whack. Living a scheduled life isn't always convenient, but, for me, it's the only way I can live independently!
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
I turn 30 next week. I cant help but take a few moments to reflect on my 20s. To say a lot has happened in this decade of my life would be a huge understatement. I graduated from UW-Whitewater, moved into my own apartment, and landed a job just to name a few highlights. For most 30 year olds, milestones such as those things are often taken for granted, but for people with significant limitations, like myself, they become much bigger accomplishments we learn to cherish. With that said, this decade has also brought many challenges and obstacles for me.
Until age 26, besides having Cerebral Palsy, I was a relatively healthy lady. I saw my primary doctor for a physical annually, but that was pretty much the extent of my medical appointments. When I hit 26, it was like a switch flipped in my body. I need to mention thiswhen I moved back in with my parents after graduating college, I continued to receive physical therapy once per week. At the time, since I was 25, I was still on my parents insurance. After a few months of receiving therapy in Fond du Lac, the insurance companies decided my treatments were preventative instead of rehabilitative. In other words, in their eyes therapy wasnt going to help me get better anymore, and therefore, they stopped paying. We checked into all the options, but, in the end, I had to stop therapy. Up until that point, I had had physical therapy at least once per week since I was eight months old. Although, there is no way to prove it, I feel as if stopping therapy caused some of my medical issues.
When I turned 26, I switched to being on straight Medicaid. Because of my disability, I had always qualified for Medicaid, but since I was always covered by my parents insurance, Medicaid had been like the last resort. Now, its my primary and only insurance. Before I switched over, I was a little nervous because I had heard many nightmare stories from friends who were on the so called system. Little did I know how thankful Id be to have that coverage just a short time later.
In summer 2011, it all started when I somehow broke my wrist. I went to the doctor and while there she referred me to a pain doctor because my muscle tone had gotten pretty bad. To make a long story short, after that appointment, while on vacation in Florida, I ended up in the hospital with an infection. It was thought to be an one-time thing, but I was back in the ER days after we returned home with the same symptoms. I was referred to a gastroenterologist and had tests done. The problem was thought to be found and I was put on medication to fix it. While all this was going on, I also had a mysterious rash all over my body. After a few trips to urgent care and trying different medications, I was referred to a dermatologist. Eventually, with medication, thankfully the rash did clear up. I finally saw the pain doctor after the holidays; she referred me to a neurologist in Neenah to be evaluated for a Baclofen pump (its a surgically inserted pump that releases medicine directly into the spinal fluid to relax the muscles). I saw him that March, and I had a test spinal tap done in April (that too ended up being a fiasco as I got spinal headaches as a result of it and needed a blood patch). It was decided a Baclofen pump would benefit me. I had the surgery in July 2012 and it was very successful; it helped me so much. I thought I was finally back to being healthy, but just a mere three weeks later, I was back in the ER with excruciating stomach pains. I ended up having emergency surgery which we later found out was literally life-saving. I spent 11 days in the hospital. Since then, Ive been admitted for more tests and had another emergency surgery related to it. Ive had very minimum copays, but Medicaid has paid literally hundreds of thousands of dollars in medical bills for me without a fight. Knock on wood, Ive been pretty healthy for over a year now, but, needless to say, Im very thankful to have coverage!
Im just now beginning the process of getting a new power wheelchair. This will be my first one through Medicaid. I was very fortunate to have had my parents insurance pay for all my chairs in the past. I didnt know how the process worked, so I asked my friends on Facebook. Basically, I got varying answers. My mom has a call into the wheelchair place to setup an eval and get the process started. Ive been warned it may take awhile, so Im prepared to wait.
Learning how the long-term care and healthcare system works is crucial for people with disabilities. Im still learning the ropes. Ive learned that its very important to ask questions and advocate for whats best for yourself.
In closing, I hope this next decade will be better medically. I cant even put into words how much I learned about life in my 20s. I learned just how important self-advocacy really is. I have no choice but to keep advocating for not only myself but for all people with all people with disabilities. Its the only way were going to be able to get the appropriate support we need in order to lead successful lives!
Heres to the next 30 years!
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.