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.