Because The Only Thing Tough Enough To Kick My Ass Is Me!!
What Does AS Look Like
Not what you expect I bet. Not someone laying sick in a bed. You can’t visibly tell that anything is wrong. That’s just it, AS is an invisible disease. It looks like a young woman perched high on a rock. Viewing a sunrise so glorious. It looks like a young man riding in a line of cyclist to finish another race. It looks like the cashier at Walmart, the waitress at your favorite restaurant. It’s the young teen in a wheelchair, or the father with severe deformity of the spine called Kyphosis. It’s the grandma smiling at her grandchildren and the papaw napping in his chair.
AS is being a normal human in so many ways, but suddenly one day things will change. You will be in a flare and become a crippled version of yourself. All the while looking like you are not sick enough to need that wheelchair, or lay around in bed. Calling out if work isn’t an option, because you don’t look sick.
This was how it felt a year ago when my life changed. I had been out hiking in Colorado, watching an incredible sunset and soaking up the day on the trails. My fingers began to feel numb in the tips, both hands, it quickly spread up both of my arms. At this point I was wondering what on earth was going on. Then once I reached the car, I noticed I was also swollen. For several hours this continued. I returned the short ride to the hotel, took a hot shower to relax and some Ibuprofen. I laid down hoping it would ease off. After a few hours passed it was decided I would go seek medical attention. Upon check up at the ER the Doctor stated with my medical history that he didn’t know what to make of it. He said I checked out fine other than the swelling and numbness.
I returned home from my trip still having issues with swelling and numbness. it then began to start in my legs. I had follow ups with both my regular Dr. and my Specialist. The regular Dr. was just as clueless. My specialist had concerns it was a side effect of Humira, this was concerning to me as Humira seemed to work so good for the pain. He then decided to send me on to a Neurologist and do more labs, just to be safe. Since stopping the Humira, I still have times I get numb, in fact now it covers the full length of both arms and occasionally sends shooting pain the entire length of my arms as well. The numbness also is still very present in my legs, mostly in my big toes but I do sense it in both my entire feet as well. Additionally it is present in my calves and thighs at times. My feet swell often as do my wrists. I have also noticed that I get this sensation that is like ice cold, as if I stuck my arms in a bucket of ice water. I get this cold sensation mostly when I am trying to sleep. It will keep me from sleeping as well as wake me from a complete dead sleep. Every time I feel this, I always have an increased heart rate. something I get often when I really have no reason for it.
I went through many years of Doctors telling me nothing was wrong, or not taking my pain serious because I can hurt like a 9 on the pain scale and will still be working, hiking, and smiling as if nothing in this world is wrong. I have an extremely good tolerance of pain, I have also had 20 years of just having no choice but to push through it all and do what I had to do. I had 3 kids to raise and had to do it on my own. I am no stranger to pushing beyond the pain. I can literally hurt so bad that it feels like I wont be able to lift my leg or stand up straight, but I will push and push until I am standing up or lifting that leg to the next step. I do not let myself just sit and give up.
However, this terrifies me, because I don’t want to be tossed down the road of no answers anymore. Why is this, because this numbness isn’t a new issue, for many, many years I have had this issues and nobody has ever listened to me. Now its getting really bad and being accompanied by swelling. I know my specialist listens to me know, I just don’t want to see a Neuro Dr. that thinks its no big deal just because I have a smile on my face and it feels as if my strength is good. I will be the first to say, that crap pisses me off! “you have good strength, really? Did you know me prior to today? Have you tested my strength on a day that was not one accompanied by numbness and swelling? I used to be very strong, now I am not! I once could assist in lifting a 300lb patient from a stretcher using only the edges of a bed sheet. I once was able to be the only person on the opposite end of a stretcher loaded with patient as it was being carried nearly above my head down steps. Now it seems near impossible to hold onto a 32 oz drink with one hand.
So What’s the Point of all this
To let you know that the day in the life of an AS Warrior is not easy. Just when you think you might be headed on a path to some improvement, that doesn’t mean something else isn’t waiting to smack you back down. This is why I fight so hard not to let it rule my life. This is why now it’s time to speak out and raise awareness. Its never going to make it easier to get some answers, but the more aware people are the more research goes into it. The more research means that more Doctors become familiar with all the vast majority of complications that AS can have. It can present so differently, some symptoms wont show up on tests. So many things that some Doctors just don’t even know yet, because they have never had to treat anyone with AS or they just don’t understand how to put a name to something they can’t see on test or physically on the person.
I know so many others out there may have it much worse than I do, that’s why I am doing this though. In hopes that if I Fight now to get answers, then they will get answers too. If you are so far gone that you are on disability or can’t get it, but you can’t work either, just know that I take these steps for you not for me. I will fight everyday to hopefully bring something to those who cant get out and fight for it themselves.
Auto Immune Disease, Because the only thing tough enough to kick my ass is me!