Thanks for updating, Brooki...Believe me, I can relate to the fact that sometimes the "treatment" is as bad as the "disease".
I endured 2 botched surgeries before a full on OPEN (6 hour surgery) from breast bone to pubic bone for Stage 4 Endometriosis. The 3rd and final surgery was performed by a renowned cancer surgeon. He saved my life, but the disease is terminal for my QOL. I was neutered, rendered unable to have the children I so desperately wanted. I was thrown into surgically induced menopause, which was BRUTAL with no HRT allowed EVER. I was injected with Lupron, a chemical that did not slow down the aggressive disease, but has ruined my bone health. My bones are so fragile, a strong hug fractured my ribs last Thanksgiving. I was rushed to the ER, placed in a neck brace and back board until scans were completed. The doctors feared my vertebrae were fractured also.
From a HUG!!!
I am 21+ years post surgery, fighting through every day (sometimes in primal screams to move). Yet I force myself to do the things I must do to remain mobile. I swim daily, because it's kinder to my bones. I do Yoga stretching to battle the adhesions that bind my organs. I do core strength training twice a week, because it's all I can handle in pain. I perform a "Lazarus" every morning, arising from the dead...often wishing I were.
I have a demanding career, not because I'm well, but I refuse to let this disease take EVERYTHING from me. It has taken my health, my dreams and my happiness (and often my HOPE). My career makes me feel productive and gives me a sense of accomplishment. It makes me feel like I'm making a difference in this world. I'm no Ghandi
but I'm a kickass architect.
It's hard...beyond hard...I don't lie. MY pain is CRIPPLING. I have more reasons to quit than to continue. I know if I stop fighting this disease, I will become the "crawling dead" as I'll be unable to walk from the ravages of arthritis...Yep, made worse by the treatments for disease.
My point is this, plain and simple...Stop "waiting" for your doctor to return your call. I think he's responding LOUDLY. Maybe he explained the decrease in dosage and his justification. If so, he feels there's nothing else to discuss. I don't think he's going to increase your pain meds. JMO An infectious disease specialist in Lyme would go at your pain from all fronts, Brooki. You need a
multi-disciplinary approach to deal with this Lyme for the rest of your life.
IT CAN BE DONE, but not with opiates as the end all and be all. Yes, I know you are hurting. Yes, I know the Hydro gives you relief, energy, etc. That won't last. Your doctor knows this. He doesn't want to see you dependent on high doses (ever increasing) at such a young age. You are upset now, but you will thank him later.
The ALDF will answer your call! They will refer you to doctors who eat, breathe and sleep your disease. The average doctor is clueless about your disease, LYME. The average GYNO is clueless (1 in 52,000) of how to diagnose and treat my disease, Endometriosis.
IF I had gotten prompt diagnosis and treatment, the disease would not have progressed to the highest stage and consumed my vital organs. Believe me, I tried over and over, traveling all over the mid south seeing GYNs who told me it was all "in my head". FUCK's sake, it wasn't in my head. It took liver failure (yep) to get me rushed 5 hours by ambulance to Oschners Research Center in NOLA by ambulance. My GP thought I was DOA with liver cancer. Guess what? Endo lesions had blocked me common bile duct, shutting down the function. Thank God it wasn't cancer. But there are days when I wish I
had died rather than
fight this fight.
As for prayer, I believe that's a good thing. My faith sustains me, though I joke that my potty mouth and salty humor don't score points with the big guy. HE has a sense of humor. You'd need only meet my family to agree! I often say
(and I LIVE this)...Take it for what you will...Yes, Jesus walked on water towards Peter and the fishermen in the stormy seas. I have to think they should have done their part by paddling like fiends towards Him and the shore, rather than waiting to be rescued.
Right now my guts are bound up like I have an alien inside me. I can't eat or poop, no matter the remedy. My body thinks it's time for my horrid painful fetal position period and reacts accordingly the first week of every month (yay me!). I'd need a uterus and ovaries for that, right? Don't have either. I'm just sayin'...Don't wait for rescue by opiates. Start paddling like a fiend via research and get the answers you need. It's complicated, no doubt. But you have to get busy living or get busy dying.
You have a good life ahead of you with the right team of doctors.
HUGS
