I still am so hopeful every time I take my meds, or try a new one, that this one will work, this is the one. Then it ends up not working not being the one. Yes biologics are great and they work so well for so many, but what about those of us that fall through the cracks? Those of us that aren't seeing the benefits of the biologics they show in the damn commercials. That's right I'm calling them out too, how many of us can actually squeeze an orange, play golf, braid our children's hair? Show us that your meds can help us get out of bed, stay awake for the entire day, do something fun with our family. Also why do none of these meds mention that they will prevent death from RA? They only list that their meds may kill you too so what's the draw? The hope for a better life, the hope that this will be the one. The miracle drug that will give me my life back. That will take away the fevers, the fatigue and the pain. I list these symptoms only and in this order because these are my hardest hurdles and this is the order of them for me starting with the hardest.
My fevers are the worst. I have them almost everyday, but everyone's RA is a little bit different. Many RA sufferers don't have prominent or persistent fevers. Many would list pain first, I have a high pain tollerance, which is not always a good thing, and I don't think a lower pain tollerance is a sign of weakness...to me it's a sign of a good brain that communicates well with the rest of the body. People with lower pain tollerance know when not to do something stupid because their body tells them hey, that hurts. For instance a person with a lower pain tollerance would know their wrist was broken and probably not spike and serve a volleyball multiple times throughout an entire week with said broken wrist, they would also probably know when the pavement is too hot to walk on barefoot before coming home and seeing large blisters appear. These are just a couple of random examples that may or may not have happened to me.
Even with my level of pain tollerance I get fed up. I breakdown. I can't take this amount of pain non stop for this long without breaking down. I want better medications, I want more choices of medications that actually work, and dammit I want a cure!
My latest infusion has not been working for me yet. I have been taking prednisone like it's candy. The funny thing is I still expect to take prednisone and be able to do it all, to actually get some things done, be able to function like a normal person. In reality all it does is allow me to survive another day, I wake up, and I can shower and feed myself, but unfortunately usually not much more than that. That's another thing that makes me angry, I expect more from it. I want more from it, and why do we balloon up in weight and get the lovely moon face, while athletes on steroids gain muscle and speed...what am I doing wrong?
Today, for a moment, I am angry. I will allow myself this moment, but tomorrow I will wake up and I will be thankful for all that I have. On Friday I will wake up and put all of my positive energy into knowing that my infusion will work this time, that we will be able to up the amount and that at the higher dosing, it will work.
I am an extremely positive person, but sometimes I have to know that it's ok to be angry.
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