since my last entry, something has changed, something within me.
i cannot single out what one thing might have made the positive shift, but i believe it is a combination of 1) all of those who have been praying for me and reaching out to me (thank you, sincerely, so very much) 2) a phone call Jeremy received from a friend who explained how Topamox had seriously effected one of their family members, making them suicidal --so Jeremy told the Pain Doctor he wanted me off of it ASAP because he became aware of the drastic from bad-to-worse change in me since i had started taking it, 3) my son sitting me down to ask me why i was doing so bad, and being so mature and compassionate upon hearing the truth, that he spent the next few hours with me, "to keep you company, and help get your mind off your pain, because i love you," and lastly, 4) a friend boldly, but lovingly, telling me in so many words, to allow God to give me the strength to fight and not let evil win this battle.
i cannot promise if this positive shift will last, but for this moment, i am enjoying the peace that surpasses understanding --even in midst of physical pain.
one frustrating situation that happened since my last entry, however, was trying to get in touch with my nurse-practitioner (NP), who ordered my pelvic MRI back in Sept of last year. i sent her several e-mails, which her assistant nurse responded to, not her. i cannot even tell you how ignorant the nurses replies were without my head exploding!
so after 3 days of correspondence w/ dim-witted nurse, i wrote one final e-mail which read:
I need you to please print and show the following letter and file to Mrs " ____" and tell her I need to speak with her directly, today.
Dear Mrs. "____",
I am writing you because I am requesting that you please help me to get the Radiology Department of Lexington Medical Center do another pelvic MRI at no cost since they obviously disregarded my broken and/or malformed tailbone in their previous two MRI's and readings, [they did 2 because the radiologist called me, admittedly saying they messed up their initial MRI] which my husband and I, having no insurance, had to pay over $3,000 for out-of-pocket. The caudal block, btw, has not proved to be effective and I am still in chronic back pain and my PGAD is worse than ever. Attached is a file w/ a list of information which should help our case.
Thank you so much, Heather Dearmon
i then attached a list of reasons why i needed another pelvic MRI, including my Pain Dr's finding my broken and severely bent tail-bone, along with several e-mails i received from the Doctor/Professor at Rutgers University (who has a very long title, including Adjunct Professor of Radiology) who i sent the pelvic MRI images to, and how he explained that the pelvic MRI's were inconclusive, taken from the wrong angles, and did NOT include my TAIL BONE!
Well by 4:30pm, my NP had not called me back, so i called her and left a message asking that she please call me before she left work, but she didn't call. she e-mailed me instead, basically shrugging me off, saying:
Heather, I am unable to write anything about the MRI since I don't actually have anything to do with the interpretation of it nor did I find the recent issues. I would suggest contacting the doctor who found the malformation and see what they can do. Thanks!
so i replied:
Dear Mrs "____"
i am seeing my Pain Doctor tomorrow, the one who found the malformation, but i'm not sure he can help me since you were the one who ordered the MRI, not him. i was hoping you could at least make a phone call for me to the Lex Radiologist with the info i gave you to see what they could do. but i understand. it's very hard for me, i am in chronic pain, and i feel alone and w/out an advocate to help me. but i won't bother you any more about this.
i will ask, however, if you would please at least call in my Birth Control to Wal-mart, which i requested a re-fill for 3 days ago, and has yet to be re-filled. By the way, your nurse asked if I knew the generic name for my birth control??? i thought i was the patient, and finding the generic name would be your nurse's job? i looked all over the my empty pack and even searched on-line, but couldn't find anything. The RX for is still on Wal-mart's Pharmacy file, so i would think re-newing it wouldn't be so hard?
Wal-Mart's automated phone service called me 20 minutes later informing me my birth control RX had been filled.
thanks a whole lot. needless to say, i won't be going back to her anymore.
the following afternoon, Thursday, Jeremy took me once again to the Pain Doctor, so we could inform him that the caudal block he preformed 9 days before did not make any difference in my pain or PGAD. i also told him about the e-mail exchanges and problem i had with my NP in trying to get her to help me get another pelvic MRI. he seemed shocked at her response, and said it was a shame. i then showed him the e-mails from the Doctor at Rutgers, and he said he would also be willing to write a letter if needed, confirming my broken tail bone, if it could help me to get the Lex Radiologists to do another pelvic MRI, at no cost.
He then explained that my broken or deformed tail-bone is not like a normal tail-bone, which should curve under, but mine shoots off --like it was broken and bent at a severe angle to the left. this may have messed up the nerves in my pelvis, esp the ganglion impar nerves which are right below the tail-bone! so he scheduled me to have a GANGLION IMPAR BLOCK this coming tuesday, 3/20 .
the Ganglion Impar nerves is a cluster of nerves that receives pain signals from the tailbone, perineum, rectum, anus, urethra, and vagina.
A Ganglion impar block is a well-established treatment for chronic, neuropathic perineal pain from visceral and sympathetic pain syndromes. If you recall me mentioning before, the sympathetic and para/sympathetic are the nerves that control sexual function and orgasm.
I'm a little more nervous about this procedure than the last b/c the doctor said, "It's going to be a little tricky considering your broken tailbone." He explained how he actually won't be going through my spinal cord, but will come in from the side, to get to the ganglion nerves. i saw on-line how some doctors use these strange square-shaped needles. so please pray for me, that i will have peace and strength during the procedure, that God will guide his hands, and that the medicine he injects will work this time.
If you're interested, the link below explains in simple terms the function of the ganglion impar nerves, and how having a nerve block there might be able to help me:
please note: any attempt to post comments/responses in way of unsolicited advice, criticism, analysis, words-of-wisdom, and/or correcting of my expressed opinions, thoughts or emotions on this blog, or worse-case-scenario: berating and condemning me, on Facebook, or via e-mail are not welcome and will be deleted before read. only positive comments or messages with uplifting, encouraging content, such as, "thank you for sharing" or "i will be praying" are welcome, as well as the ever-so-confirming "like" button on FB. thank you for being gracious. much love ~Heather