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Listen to Hober

 

So, in preparation for the upcoming biopsy, I keep looking on the net, and I have contacted 2 of my MDs for different help. This was yesterday, I may have mentioned it, but I'll repeat, and go forward.

For sedation, the surgeon said take a valium. Yeah, right...that will do it...I told him about my health issues, and my experience with sedation and pain during my previous surgery, and other procedures, and how I don't know from sedate, a sleeping pill doesn't even shut my mind, and 2 pain clinics later, along with assorted "visualization" meditation attempts, including "Journey to the Wild Divine", I just can't get there yet. So, since it's using stereotactic core needle biopsy, they need me to be STILL!!! Without help it's gonna be tough, and with help, it will be too.

Luckily, nay, no! let me ammend that, there was no luck involved, it takes responsibly and with caring, Gary phoned last night to suggest what I do to get through it with control needed to stay still. Thank you for being there for me.

I also had a call into my PCP's office from yesterday after speaking with Leslie. Since my PCP was out, she said she'd get back to me today.

So, today came, and I received a call from the RN in my radiologist's office. She was very warm, and asked questions, and then let me ask some [unfortunately, she will not be there next week while I'm there...ratz]. Among my questions, was to see if she had my records, no such luck, so I had to "catch her up" on my plethora of Dx and some mention of my Rx, and my trips to the ER...and the way, historically, people, medical people, treat me when they hear about my pain Rx I take.

I have no idea how they come to a conclusion that I am in ANY way a "junkie" since:

1. I don't prescribe them, they are chosen for me
2. I don't like taking Rx. I have always been phobic to take them; loss of control etc. -- funny joke there, "Universe"...
3. I am still in pain, despite what I take.
4. I have side effects that are no fun at all
5. I still end up in the ER with breakthrough pain for extra help
6. I hate needles, and usually, the way to get Rx in my system to help me, is IV or in the rump.
[and the majority of RN at the hospital, think I'm not human enough to take seriously, so they actually do a "wind up" and jab me hard with the syringe, and then, if one injects is slowly, it burns less, but they tend to say, what the heck, you deserve hurt for getting these pain meds...very pleasant, eh?]
7. It costs a fortune to go to the ER and to get Rx and to pay the lab fees and the MDs on call, and not being able to work, I am concerned about my funds.
8. I could buy "toys" and go on vacation
9. I want to be healthy!!! When I was healthy, my life was hard, but it was also hard at play too. I enjoyed and life and my achievments, and I met people, and made lasting relationships, and I did Martial Arts, and I crewed hot air balloons, and I earned money, and I hiked the red rock canyons, and went to health spas, and jogged, and played, sigh, tennis, and learned new things all the time, and I did photography, and dabbled in other arts, and would be able to persue avenues of fun and work and life and hop into my car and just goooooooooooo...........points unknown...now why would I choose to pretend I'm sick and hurting, when I could be enjoying my life?!? What are they thinking?

So, tell me why do they not realize this is not my choice, it keeps me chained to my room and not far from it, lest I need help. I'm a virtual prisoner of my chronic illnesses. And, I have had specialists tell me that I really have actual disease and illnesses -- it's not in my head, they can find physical things wrong! They just can't identify what it is to cure it, or as of now, there is no cure.

This is not my choice.
This is not my diagnosis.
This is not living.

But, that was another digression yet again.
When I spoke to the nurse from the radiologist's office, she told me they will be working on 3 different areas. And so, instead of the usual hour that they set aside for the biopsy, they will be setting aside 2 hours for this one.

She said that the Dr could not offer any pain Rx. She acknowledged that I am a difficult case, but she said they'd be working with me during the procedure to keep me calm and check my comfort level. She said that I should be talking with the surgeon who referred me. I told her that he refused to help in that arena.

I mentioned I spoke about sedation, and she was glad about that, and then suggested I talk to my PCP. I told her I put a call in yesterday, and am waiting today for an answer. But that it's like I keep handing off a "hot potato" and none of the MDs want it. She agreed with me, but she could not offer anything more.

A bit later, I did get a call from Leslie, telling me to talk to my surgeon for pain medication. I told her that he is not doing anything, and has handed me off to the radiologist, and besides, he didn't seem very sympathetic to my needs and health complications.

Leslie then said, ask the radiologist. I told her that I spoke to the nurse, and she told me to go to my PCP for help, especially since he would know me and my case more intimately. Leslie and I chatted a bit more about the "hot potato" and then she said, OK, I'll put it under his nose on his desk again.

I put in a message for Gary now that I have new information about the procedure taking 2 hours instead of the usual one, and wanted to touch base to ensure that the dose still would hold over long enough. I even left word in the message that if I don't hear from him, I'll assume it's ok.

Well, Gary, the professional and kind man he is, phoned me anyway after work hours just to let me know that the dose will be fine and to not worry about that. He also said I'll probably be groggy and drowsy, that would be good...but he told me so I wouldn't panic, he knows I don't like taking Rx...thank you again dear doctor.

So, I figured I'd get a phone call tonight, but no, no luck! I'm up the stream without a paddle as of now, but I still have Friday to try to get help, and last but not least, Monday. Unfortunately, there may be a good chance that if he ups the dosage of something I'm already taking, it will take days to have it get into my system and ready for the procedure and it's backlash post-procedure.

I also sent off an email to a dear friend who has had breast surgery, and she was amazing!!! Her words were so perfect -- just enough sarcasm, and enough pathos, and reality about her experiences.
Thank you dear friend!!! I won't use her name because I feel uncomfortable posting such personal information of hers.

So, I haven't given up. I keep looking at BBS, and google different combinations of keywords to find more help and direction -- maybe even to help me find a miracle pain pill?!? Yes, yes, magical thinking again.

So, the recurring theme in my life is that I'm usually among the first to have an illness, or join a cause, or take a Rx etc...sort of trailblazing, and getting feedback from people who were to help me, that I am a malingerer, liar, or a simple fool and hysterical woman.

So, I'm tired of having to defend my illness(es) and treatment(s) -- I'm tired of having to prove I have a right to be scared and hurt. Not just to MDs -- once they get "it", they are usually advocates, but that takes a lot ofr time and their getting to know me to realize the truth in it all.

But it is a struggle with educating family and friends too. How long did I have to "prove" FMS was real, and I had it? I have always seemed to find myself in a position of peace-keeper; take care of myself and others, get the word out to the public, yet, by now, haven't I paid my dues yet? learn my "life lesson"? something?

I'm just so tired and tired and tired. It would be so much more manageable if people would believe me, and work *with* me as their default reaction, yes?

But, until then...
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