If you are one of the lucky ones like me that deal with pain on a daily basis – here is a soft high five for ya! My normal daily pain I would say is about a good 7 or 8 on that happy little pain scale at the doctors office. You know which one I mean,right?
They should have a chronic pain scale that goes higher. This past month – I am a solid 11. Spinal Tap Style…. ( you millennials prob don’t get the reference, google This Is Spinal Tap ) It royally sucks. I know I have bitched about this before, but it fucking sucks.
Not knowing what is causing my issues fucking blows. If I had a cause, I could treat the cause instead of treating the effect as we are now. Like, if you have cancer – you get chemo, diabetes – you take insulin , cough -cough drops. I am stuck with no cause.
I am at the mercy of my body giving me no symptoms or warning – the flares just hit and I am in the middle of a long one. I know it could be worse and I am grateful that its not but this shit is getting old. I have been doing my Actemra shots each week but currently I am waiting for my shipment to arrive. Specialty pharmacies are great, lemme tell ya. So I was getting my shots from CVS Specialty pharmacy, but I got a new health insurance and have to go through a different pharmacy. I was on the phone with them all week, they kept transferring me to a voicemail that specifically says ” leave your name and number….blah blah blah and we will call you back ….YES, WE WILL CALL YOU BACK ” Left messages all week and finally complained that no one called me back and I got to speak to someone. Problem is that I needed to take my shot on Thursday night. Its Sunday. And my shipment won’t be here til Tuesday. They did say I would not have to pay the co pay for my trouble,but honestly, I don’t care – I just need my meds. Ugh.
It sucks to rely on something to feel better , even when its not working good. But the potential is there and it gives me hope.
I have thought about going back to the drawing board and taking all of my tests and starting somewhere new, like a 3rd or 4th opinion. I don’t know if that would be worth it or not.
I am sorry this is a pity party, but I am frustrated as hell.
I haven’t been to the gym in a month and I am pissed. But I hurt. Its hard enough to be me day to day and get through what I need to .
In other positive news – I am still steadily losing weight. Currently down 72 pounds!!!! I am definitely navigating eating better. Thanksgiving was different this year, had to really pace myself and certainly did not eat nearly as much as usual.
So, I have been thinking. There has got to be some medical student , some doctor, some medical professional who is looking for a case. Who wants to be the person to give an actual name to Meganitis? I am serious. If you want to take a crack at it, hit me up!
I don’t think that its too much to ask to ween the daily pain down to a 4 or a 5 if I won’t ever be without it.
I just gotta have hope that eventually I will have an answer and feel better.
Until next time folks -Just gotta keep swimming !