My Journey and How I've Managed to Cope
The day after Superstorm Sandy, I twisted my knee. A few days later it had gotten worse, so went to the doctor. Sent to a ortho, and April 19, 2013, underwent knee surgery. Never had surgery, never had any major issues, started physical therapy, and by July 4th, was ready to go back to work.
Where did my legs go?
However, this is when I began to have issues and my legs gave out no reason. I fall, take a moment to compose to be able to get up. Between July and December, I had been tossed around to several doctors, and then finally one blood test showed everything that would help start getting the answers. I have AS and RA. At the time of diagnosis, it was just a high RA factor, and over the past 3 years the changes went from the high RA factor to RA. Then after numerous medications and treatments, things balanced out.
New year, new problems
Then New Years 2015, got a splinter, ended up with an infection that required 3 emergency surgeries. At the time I was on Humira. Nine months of antibiotics put back on and no effect. Switched to Enbrel and has worked great since. It was also at this time I tested positive for MRSA. And in the last year Latent TB, however this came from exposure when I was in the military, and both linked as I also have been diagnosed with a 9/11 related illness. All during this time, between PT, acupuncture, and always on the go, I will never let any of these "diagnosis" rule me, I rule my body.
I also moved from NJ to NV, the weather alone has been a game-changer, I am a lot more active, and can do things. I still have times that I fall, and it is what it is. I get up and keep going. There are days that I do not want to even get up to go to the bathroom, because the pain is through the roof, yet I will meditate, ground myself, and then get up.
My team od doctors
I now have a team of doctors, between the VA and outside that all keep each other up to date, and from all the medications I was on, I am down to 5 and the Enbrel. At the peak of everything it was 17, and all that was doing was poisoning me slowly. I will need knee and hip replacements, but until they go, and my doctors know that there will be a mess to clean up, until they are completely shot and I can not move, I will not have another surgery.
Each day, I get up, no matter how long it may take, but both feet are on the ground, and I go. I walk. I stretch. Also, don't ever be afraid to reach out for help, being a veteran, in the last 10 years, over 15 people I have served with and worked with have taken their lives.
I was at that point in 2015, then, my best friend committed suicide, no one saw any signs, that day, I made a call, and saved my own self. To this day, still have therapy for those issues, and when dealt a condition with pain, I make sure everything is out on the table. I don't wear a mask, I am blunt, and not afraid.
Do you use the word disability to describe your AS?