When Strength Becomes Weakness!
Living A Life In Pain
I have spent the past 19 years of my life knowing what it feels like to be in some kind of pain every single day. It wasn’t a come and go kind of thing. If you have read any of my previous AS blogs, AS Doesn’t Rule My Life! Or Because The Only Thing Tough Enough To Kick My Ass Is Me! You might just have a small idea of what I have gone through over the years. Some days I think I should do an all out blog on how this has changed my life from day one until now, and others I feel like nobody wants to read that mess. Let me get to my point. As I stated its been non stop pain for 19 years of my life. Of course this pain started on the low side of the scale and didn’t do much but get on my nerves.
I did begin to have an increase in pain over time, and that I adjusted to as well. Many challenges have entered my life as years went by and I learned to be stronger and stronger. I would seek out medical advice a time or two and get frustrated and give up. To me it seemed easier to deal with the pain I was so used to than to get treated as if I was crazy or worse, and definitely easier than getting sicker from treatment that wasn’t even helping. My life became nothing less than I wanted it to be, regardless of the pain. Nobody I knew understood what I went through and many didn’t even know I was going through anything at all. I got stronger and stronger as the years went by. I ignored the pain even on those extremely intense days and I pushed on with raising a family and holding down a full time job.
A Diagnosis Finally Comes Along
As things continued to progress with whatever was happening to my body, I began having eye problems. Iritis, which you can read about in my previous blogs as well. Had it not been for this, I never would have got a diagnosis. I had become determined not to ask another Doctor what was happening and why. One simple request for blood work by my eye doctor led me down the road that changed my life for the better. I have always been a fighter, I never once just let anything happening control my life. I stayed very active. I worked jobs that required a lot of me physically and I raised my family mostly on my own. I absolutely refused to just lay down and complain my life away.
I began Hiking because I had even more determination to keep from giving into the pain I felt. I continued to look for ways to challenge myself at work too. My blood work came back positive for the HLA-B27 gene which is a marker for AS. I was referred to my Arthritis Specialist and Diagnosed with AS last year. I began Treatment last year as well. Starting with the least invasive and quickly having to move to the Biologics. The Humira injection was the option my Doctor wanted to go with. It didn’t take much time after my first injection before my pain started to decrease from a 9 to a much more tolerable 4/5. By the second injection my pain had decreased to zero on some days and on the days I felt pain, a very easy to tolerate 2/3. I had energy, I slept full eight hour nights. I knew what it felt like to really feel good again. I had a real life and I was loving every moment of it.
The Downside to Discovering A Life With No Pain
I bet you are thinking, Downside, is she crazy? Well, no I am not! As I mentioned above, I have dealt with pain for 19 years of my life. I had no clue what it was like to feel normal until Humira that is. Then suddenly after about six months of this something began to change. I had noticed I felt so good I was actually overdoing it. I had to back off and adjust in order to not push my body beyond its limits. This was difficult to do as I am not a sit and do nothing kind of person. I did it though.
Then during a vacation out west I began to swell and have numbness in my arms. An ER trip, and GP visit and a visit with my Specialist yielded no real answers. The only thing I got was it could possibly be a side effect of the Humira. My specialist decided to stop the Humira and see what happens. He also referred me to a Neurologist to be safe. I have not yet been to the Neuro Doctor and my symptoms have only gotten worse. I now swell and go numb in my legs and feet.
This is creating a rather frustrating situation for me. Most days when I first get out of bed, I can barely walk because the pain has come back and increasing daily. Worst of all my feet are so numb that my ankles are weak and I struggle to support my weight at first. Once I get myself moving, I do better, but its still difficult to walk at times through out the day. This whole ordeal has made me feel so weak and powerless. I struggle every single second not to let this control my life and every ounce of strength I ever knew seems to be nowhere in sight. The activities I once loved even in those days of high 9 level pain have become torturous task. I struggle to do my house work, and maintain a positive attitude at work. I smile less and I feel absolutely miserable every single day.
Never Thought I’d Wish I Didn’t Know Normal
Every single day I think to myself, I wish I had never experienced what normal felt like. I hate to sound like I am tooting my own horn, but I can’t even believe I managed to live for 19 years suffering much worse than I am now. How is it that I feel so horrible and am struggling so bad to find that inner strength again? You never know just how good you have it when you are 100% healthy. Don’t ever take it for granted, because those of us that suffer from chronic disease and pain, we fight so hard to even have a semi decent life. Going through this has made me resentful towards things others say and do. It’s so hard for me to not want to walk up to a perfectly healthy person and smack them upside the head when I hear them complain. I need to get my MOJO back.
I don’t like feeling weak and powerless to my disease. I don’t like thinking that I actually have to alter my plans around my bodies current level of pain, numbness and swelling. I REALLY don’t like knowing if I drive to far, or hike that I am going to trigger numbness and swelling to occur if its not present. Driving has always been one of my go to relaxation sources. I love to travel and see the beauty around me. Now I have to consider potential health risk. What if it’s something more serious than a side effect? If it is the side effect, am I going to have to go back to living a life of daily pain? I have never felt more broken and scared and completely weak! I guess that’s what happens when you feel 100% and then suddenly get thrust into horrible pain and other complications. So many people tell me how strong I am, and until now I didn’t even realize just how strong that was. I must find that same courage, motivation and strength again. There is just this part of me that knows its going to be a much harder journey this time around, simply because a month ago I knew what normal felt like.