So last month, I posted a rant on my trials with pain and the difficulty I have speaking with my doctors about increasing my pain medicine.
I have been slowly increasing my Lyrica. I started by taking one at night, one in the morning and one at night, one in the morning and two at night- now I am at two in the morning and three at night.
On Tuesday, I met with my pain doctor and told her everything I've been feeling 1- I'm not sure Lyrica is quite working since it's too early to tell 2- Oxycodone has become ineffective for me 3- I would like to try a stronger pain medication so I can take it LESS frequently.
Thankfully my doctor did not meet these requests with adversity. This was her suggestion:
1) my I am taking a lose dosage of Lyrica, and that I am allowed to take MORE than prescribed during my pain spells i.e, three in the morning, three at night and possibly one or two mid day. And to see how that helps. NOW I'm taking 2 in the am 3 in the pm. So it's flexible...
2) if the pain really is THAT bad when the Lyrica is increased she named two opiates that have nerve pain relief qualities to it (uhh why couldn't I be told this as soon as people know I had nerve tumors in my area of pain) that I could start in place of oxycodone.
Anyway, this plan seems fine to me. I'm totally fine with trying out increasing Lyrica in hopes to take fewer oxy pills, and if it really doesn't work, to let her know and i'd get started on the new nerve pain medication. So now I guess it's a trial. Will More Lyrica Help Me???
I'm curious to see how this plays out. My pain is not from overactive nerves. My pain is from TUMORS growing on the god damn nerves. So if increasing the Lyrica really can help, then YAY. If not, I hope the new pain meds she suggested work. IF NOT, then they really just need to understand I hurt from tumors ON nerves which causes pain, not from NERVE PAIN. It's DIFFERENT.
I am currently in the beginning of a pain spell. So far taking an extra Lyrica has helped ONE oxy to last longer. We'll see- I shall keep documenting my tribulations with drugs.
It's SO disconcerting to see how many pills I ingest in a month. About 300, 350? do you know how many pills I would take before I had cancer/major NF problems? less than 20! 20 would be max. Crazy.
In other news, I had two large polyps removed from my uterus toward the end of September. I love how my body grows polyps galore. Not. But the scope went well. I was worried I would be awake. I was told in pre-op that I most likely won't be under general anesthesia- they want me to be aware. This freaked me out because I remember being 'aware' during my biopsy in August 2011 and it was a traumatizing experience for both me, the nurse who administered and monitored the "sedatives", and the doctors performing the biopsy. It was the first time I held a nurses hand and cried. It was the first time I screamed bloody murder. BUT I was told that the sedatives they'd give me were more powerful than what's given for endoscopies/etc. So I'd be asleep but conscious enough to be awoken and answer questions like "are you feeling ok?" etc. I didn't like the thought of this. BUT in my plethora of experience undergoing endoscopies, thanks to those drugs, I sleep well during the procedure, occasionally waking up and gagging, but then I get put back to sleep. Actually, having numbing crap sprayed in my throat is the worst experience of an endoscopy. That's because I can't swallow and I cough and gag until i'm finally sedated and sleepy. This scope is a bit more involved with 'scraping' etc etc. Egads. I thankfully have no memory of this scope. My legs hated me for a day though. Ouch. Just FYI if you ever go for a hysteroscopy! OH and I will say that if the pain induced by the cervical expander medication ( I had to take to prep for this scope) is ANYTHING CLOSE to being in labor that I am VERY VERY VERY glad I have chosen to not have kids. That was really really bad pain. I took 1,000 mg of pamprin + 2 or 3 oxys at one time and still did not really experience any relief for at least 2 hours. i don't care if this is TMI.
Anyway, both polpys were benign. There's a chance they can grow back. I'll know if I have crazy irregular bleeding again. I hope this decreases how holy zeus heavy my periods were. And I hope THEN that my iron levels/red blood cell counts increase since I'm not losing as much blood. We shall see. I may have mentioned in that last entry that I had two infusions. I feel a SLIGHT difference in my energy- but not a LOT. It could just be because I'm depressed.My doctor showed me what my polyps looked like (a picture was taken) but I was still on sedatives, so i don't really remember. I'm liking my gynecologist much more these days. Before she was SO dismissive of me. Now she seems to be more dedicated to my case. I hate dismissive doctors.
My swallowing problem, I think, is getting worse. I coughed up food today because it wouldn't go down. I'm worried about THAT becoming progressively worse. FIXING this problem will be like what was done in 2009 for my stomach surgery. And then I WON'T be able to eat. This part is SO frustrating, but it's not unmanageable. Believe me, I am SO lucky to be alive after having cancer. I think about that every day.
I know it's stupid and selfish, but I feel SO depressed not getting a job. Part of me in my mania thinks "41,000 down the fucking drain" but then again, I met such great people and had such a great internship with the best supervisor I could ever ask for, so I CAN'T call the last 2 years a waste. I'm just so frustrated! What's wrong with me?! What's wrong with my resume? I just don't get it.
I am not religious by any means, but I have a theory- perhaps now i am having the worst time, but when John gets his faculty job, I will then get a job easily. I just want SOMETHING for now. And who knows, maybe John WON'T get a job so he'll rely on ME being the breadwinner. GAH it's tough! My NF doctor is quite positive I'll feel better, and possibly have less pain when I get a job. We'll see about THAT!
Anyway, this blog has gone on for some time! The moral of this blog is that I will be increasing my Lyrica and hopefully that means I take less oxy, which would mean my stomach won't stop working for 1-2 weeks at a time. Most importantly, it should mean that I get better relief. Yep.
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