What I know so far from a medical standpoint is….
…. I have sacroiliitis which is inflammation of the SI joint, Sacroiliac joint dysfunction, degeneration in the SI caused from prolonged inflammation (ie sacroiliitis), bone marrow edema in my right SI, high markers of inflammation in my blood with evidence of arthritic damage in my lower back.
I know, fun huh?!?
Up until about 6 days ago, I had been dealing with, mostly nerve pain. It ranged in severity from day to day for a year in my right leg/hip. I have on and off backaches from barely noticeable to being pretty sure something is breaking in half, and my right hip aches off and on, but this was the gist of it.
Now, I avoid doctors at all cost. I always wait until it’s really bad and I can’t handle whatever it is anymore.
Either that or I get tired of hearing everyone saying, “Well, maybe you should uh, go to the doctor!”
I know it’s out of love, but for me going to the doctor is just another box I don’t want on my daily to-do list. I don’t want to have to go to the doctors. I don’t want to be that person.
I don’t want to have to take medications.
I just simply don’t want to deal with it.
A week ago, despite how badly I just want to ignore it, I finally decided to start taking control of this situation, for real this time.
I’ve been here before and that’s why I have what information I do have, but when it seems like they aren’t going to figure it out I just get overwhelmed and I give up. Aside from one steroid injection (it took months for me to agree to this one and it only worked for 3 days), anti-inflammatories which didn’t touch it (so, why bother?), and lidocaine patches, I haven’t tried anything else the doctors have discussed.
I just assumed it would eventually go away.
Anyway, I met with a primary care doctor on Tuesday who started me on a steroid taper and put in a referral to pain management and rheumatology.
This whole process is new for me and I am just going to share as it’s going down, so bear with me.
The steroids, I HATE and I’m pretty sure Dan was ready for a divorce by the end of day 3. Not that I’d blame him. I’m a natural redhead with a temper and I’m not always the easiest to deal with.
Anyway, back to the steroids. They make me incredibly irritable, shaky, nauseous, and extra sleepy. I’m on the second to last day of the taper and I wouldn’t say it helped enough to make a difference.
The pain has only gotten worse and, it’s changing (I’ll come back to this).
On Wednesday, I met with physicians assistant in the pain management department. She was nice. She handled my snot and sobbing like a pro and really seemed to hear my concerns. After discussing my options, we decided to move forward with another injection in the SI joint.
I won’t meet with rheumatology for almost two weeks.
Okay, so these changes I’m feeling…..are crazy. Well, that’s how they’re making me feel anyway.
I didn’t even discuss these with either of the doctors because it wasn’t happening yet.
It started Thursday and has just progressed.
My right hip had been burning and aching for a bit, but now it’s in both. I keep getting the sensation of being snapped with a rubber band and electrical zaps in both the left and right joints. My legs feel like I’m being poked with dry grass or porcupine quills. I get rushes of pins and needles all over my legs, feet and, as of today, my forearms too. My hips, knees, and inner and outer thighs won’t stop burning, and I have NO IDEA WHY!
I want to say I’ve been handling it like a champ but that’s not really the case. I spent most of the weekend in my head.
The same thoughts kept running through my mind on repeat.
Why is this happening to me? What am I going to do? How do I fix this? Can it be fixed?
It becomes a vicious cycle of a bunch of crap NOBODY wants to deal with, especially me.
I wasn’t surprised when I woke up physically and emotionally EXHAUSTED today, so I decided I’d try my best to have a good (mental) day!
Good mental days can take a lot of work for me. It’s difficult for me to reroute all my worry and negative thoughts into positive or thankful ones when my life seems so disheveled and scary. My anxiety takes over and I struggle to control it.
Not a lot helps me when I’ve gone far enough down the rabbit hole if you will, but this is usually what helps me if anything is going to, so I thought I’d share.
I start by thanking God for all I have, all the blessings, and beautiful people in my life.
Literally, I start listing them out loud, saying thank you for each thing that brings me any bit of joy or happiness, one at a time.
1)My husband 2) My kids 3) I get to stay home ……and so on and so forth until….
…… the darkness starts to fade and your thoughts become clearer. When things just don’t seem as heavy you know it’s working….keep going, over and over again until you can see the light.
It’s there. Just be patient.
My clearer thoughts for today: It’s not my plan, it’s His! I have to be patient. I have to be still.
Acts 1:7 “It is not for you to know the times or dates the Father has set by his own authority.”
As always, thanks for reading.