It is possible to succeed when you get knocked down

It’s exciting to finally be at the point I can begin to rehabilitate my leg. Last week I met with the surgeon, and was given the clearance to walk with crutches. It was determined I will need an AFO brace to provide stability to walk. This is a specialized brace that provides support to control the position and motion of the ankle. This brace compensates for weak limbs, as well as position a limb with contracted muscles into a more of a normal position.  I had the AFO molded to my foot, and it reminded me of the process done when a plaster cast is put on someone’s limb. It will take 2-3 weeks for the AFO to be made, and then I will be able to take it home and officially wear a shoe. It has been 2 years since I have worn any form of a real shoes, as my feet was too contracted to fit into anything. 

For a good period of time, I didn’t think I was ever going to walk again. I felt like I was watching life with very dark sunglasses caked with dirt, in a pitch black room; the only light was distant, but not possible to recognize. Nothing seemed clear, and I had to use my other senses to trust thing would get better as I couldn’t see. As things began to look up, my sunglasses began to clear around the edges. I would take one step forward, and 4 steps backwards; my sunglasses became caked in dirt once again. It’s hard to stay upbeat and positive when so much is out of my control. At one point I felt like everything was my fault. As I am getting my ‘walking privileges’ back, the dirt is scraping off in chunks. Physical therapy  begins next week, and layers will continue to crumble away. 

As the casting for my AFO was being done, it began to dawn on me that this brace is the next piece of equipment that will be life changing for me. To think this time last year, customized  shoes were made for my contracted feet, and would eventually be adjusted so adapt half an amputated foot. I remember driving home from the appointment with one of my PCA’s and having tears roll down my face. I felt sad and alone knowing that I looked different. I already felt like I stuck out like a sore thumb for using adaptive equipment to help ambulate, and these shoes were a dead give away that I looked different. These shoes looked like they were meant for Mickey Mouse’s feet. I wore those shoes once, and I will always keep them to remember how far I have come. 

I have uneasy feelings knowing I will always need a brace on my leg, but then I remember this could have been so much worse. I was told I would wake up with half a foot, and if I didn’t have surgery to correct the excessive damage, I would never walk again. At one point in the beginning of my dystonia journey, we were unsure if I would regain the ability to walk again, leaving me wheelchair bound. I refused to give up because I knew things would get better. I always had hope I would get back to where I left off two years ago, but I’m glad life steered me in a different direction. I never wish what I went through on anyone, but I learned many valuable lessons about myself through out this period:

1. Resources are available for individuals who are disabled. It takes a lot of patience, but there are options. The disability community has to stick together, as they can be more knowledgeable than many providers. 
2. SSI/SSDI is a corrupted and broken system. If you have a disability, you have to fight all you can to receive assistance as there are many individuals who abuse the system. 
3. Self care is critical. If you don’t take care of yourself, you will never heal and be happy with who you are as a person. 
4. It is okay to cry and be angry. Never bottle up how you truly feel, as you are doing more harm than good. 
5. I refuse to give up, even when the hardest obstacles have been chucked at me. 
6. Never give up fighting for medical care, even when health insurance is putting up a fight. Health insurance can be a b***ch.
7. It is okay to accept help from others. 
8. 3/4 of a masters degree in social work taught me how to be a case manager balancing all my medical shenanigans. 
9. If you don’t take care of your mental health, it will lead to further issues.
10. When life gives you a bag of ultra sour lemons, be patient as sweet lemonade can be made. 
11. If you can’t laugh about difficult situations, then the healing process will be delayed. 
12. The only option that matters is your own...and maybe the dog’s 🤷🏻‍♀️
13. Asking for help doesn’t mean you’re weak. 
14. Be honest with yourself.

When life knocks you down, there is always a way to pick yourself back up. Reach for a hand, and ask for help; there is always someone there to cheer you on. I am extremely grateful I have supports who have and continue to  help me get back on my feet (literally). Without leaning on others for help, I wouldn’t be where I am today. When you live with a chronic illness, you never know what the next day will bring. Instead of worrying about the future, appreciate the present moment. Look at what you are grateful for, and note the positive moments. Even if it was a no good really bad day (such a good book), there is always a positive moment hiding in your peripheral vision. When it is hard to see clearly, take a step back, and adjust those filthy sunglasses. When you clear away some of the dirt, positive moments are in the corners where the dirt rubbed off. 

Having a chronic illness will keep you on your toes

At the age of 20, I had a spinal cord stimulator implanted to help my RSD. A SCS is the idea of a tens unit; the difference between the two is a SCS in internal. The purpose of a SCS is to mask the pain signals before it hits the brain. Paddles and wires are implanted in my spinal cord, and a battery is placed in my lower back/hip region. What’s really cool is I have a remote that controls the stimulation, so it gives me the ability to adjust and change different sensations in different areas of my limb. The battery that is implanted has to be charged once every 2 weeks, as well as the remote. Even though the battery is rechargeable, it has to be replaced every 7-10 years. 

For the last year, I have been having issues with my stimulator battery. Lately the battery has to be charged every 2-3 days, and it does not hold a charge. The only way I can charge my battery is if I am sitting in bizzare positions. I had an appointment with my pain doctor, and 2 hours was spent trying to reprogram my SCS. After talking with my doctor and the Boston Scientific rep, it was agreed it would be in the best interest to change out my battery ASAP. 

I received a phone call on Wednesday from his office confirming  my surgery for November 15. My doctor wasn’t joking when he said he wanted this done ASAP! My SCS has helped me in so many ways, and this is a resource that I benefit from greatly. The procedure seemed simple when it was explained: open up my back, pop out the old battery, pop in a new one, sew me up and call it a day. It’s an outpatient procedure, so at least I can be comfortable at home.  It’s never easy to go through surgery, and Im not going to lie 4 surgeries in a 1 year span is intense.

 I realized that this upcoming surgery is actually a milestone; after this procedure, all the surgeries on my left leg will be done. Technically I am half way done with my surgical journey! It’s such a rewarding and satisfying feeling seeing how far I have come mentally and physically.When you can see the eye on the prize, it makes you fight harder so you can win.. Keeping an open mind can be quite challenging in the beginning, but it gets easier as time goes on. When you’re having a difficult day, think about the things you are grateful for. It could be as small as getting out of bed and taking a shower, or sitting outside getting fresh air. I could give a laundry list of everything I’m grateful for, but today I am extremely grateful I will be getting a new SCS battery.