There's a lot I want to say but it's hard to organize my thoughts. I'll try! It's very late as I'm typing so forgive any typos.
On Pelvic Pain
A few months ago (February), I made this video:
In this video, I was describing my recovery from my SECOND abdominal surgery, and how I was feeling from there pain wise. At the time, I was on 2400 mg of gabapentin. But a few days before I actualy made this video, I had a TERRIBLE case of bronchitis. I had so much medicine to take that I stopped taking the Gabapentin. It made me terribly 'foggy' and I was having so much trouble participating in class discussions.
I was taking the Gabapentin because after my surgery, I had terrible referred pain- exactly opposite of my surgical area was this intense burning sensation. Gabapentin saved me! But I realized a week after stopping the Gabapentin that I no longer had that burning sensation! So I stopped it for good. It made me WAY loopy. I couldn't focus, I couldn't remember words, I felt like I was flying...so glad to not have to take it anymore....
I bring up the Gabapentin because in that video, I mentioned my right side pelvic pain not being NEARLY as bad as the pain was when my left side tumor was growing.
I think I could say that because Gabapentin was in my system.
Though I don't have burning referred pain anymore...oh my god. My pelvic pain has gotten worse.
Every month, the pain intensifies. And every month the pain spell lasts longer. Except for one month- February- I went crazy and started taking Gapabentin again, opposite of cold turkey, mind you. In stead of working my way back up, I started back at 2400 mg a week. I was so drugged up. And so hungry. I gained 10 pounds! Then Comps prep began in March and I stopped taking it again....
My NF doctor tells me I'm doing a disservice to myeslf not taking the medicaiton. I know I know but I hate being drugged up. I don't have much after effects from Oxycodone anymore. It's almost like tylenol now. I take one, and it lasts for about 20 minutes, 2 and it kicks in immediately (almost) but lasts an hour- 2 tops. One night, I woke up every two hours due to extreme pain. So I took 1 every two hours (which is about equivilant to 2 every 4 - 6 hours- my prescription allows me to take 1-2 every 4 to 6 hours)
On taking Oxycodone.
So yes, I take Oxycodone. And yes, i take a good amount of it. It bugs me though because every time I talk about it, people warn me not to get addicted.
This angers me.
I know people care about me, but this angers me.
I have pain that NOT EVERYBODY goes through. I have nerves that are shredding me up. It's either that, or I have a tumor growing that's shredding me up. Oxycodone is the only thing that helps me. I have unfortunately developed a tolerance to it, but I am quite certain I will not be addicted to it. Tolerance is quite different from dependent! And I'm quite certain that if 3 doesn't work that I'm not moving up to 4- I am getting a new pain medication.
My pain spells last 2 weeks. In those two weeks, it's a chronic, burning, pulsating, pulverizing, grinding, pulling pain. I do my best to NOT take an oxy- to stick it out...but then my leg becomes wobbly and i want to pass out. This is why I take it. I don't feel like I take enough to become dependent on it! I think I would be quite upset if I ran out of pills in the middle of a pain spell and couldn't get medicine, but I would be able to HANDLE it- it would be hard but it' snot like i would go into withdrawals.I would just be in massive pain.
And when I write this, it makes me feel like I'm justifying myself as an addict would, which is ridiculous because I'm not an addict, so I would appreciate it if any of you reading this will just TRUST ME and LEAVE ME ALONE about it.
I used to think of being on this medication as a stigma because a lot of people DO overdose or take it JUST for the loopy feeling they get but --
1. I don't GET loopy on this mediation!!! It just eases my pain. I don't get high! Just talkative....and happy...happy because i'm pain free..perhaps it's a marijuana type effect, but i don't YEARN for this feeling. I just want my god damn pain to go away!
2. I NEED the medicine. I have a REAL problem. So I shouldn't be ashamed.
so please stop bothering me.
The Mental and Physical Exhaustion of Pain
I can't get out of bed so I'm late to work or I don't go in at all...it's awful. And when I DO get relief, I am just holding my breath for the next wave to come at me. I'm scared it will occur when I'm at work because if it does, I have to stop what I'm doing until the oxy kicks in.
The pain has also moved. before it was my lower right pelvis. now it's on my hip/near my hip/mainly on the bone. It gets REALLY warm. My leg gets wobbly if I don't take anything as I mentioned above. It's awwwfulllll.
And then it ends...just like that....pain all night then boom, the next day it's gone.
While it's a relief, my body....is just so TIRED. And for about a week after the spell is over.
What will be going on this month
i don't keep a written journal/calendar of this pain (though I should) but I have realized that this pain coincides with my period My pain doctor said something that hormones could trigger the nerves....maybe that's it. But the pain is just so....bad. The other day, when pain lasted all night, I actually cried.
Anyway, I met with my NF doctor a couple of weeks ago for several reasons:
1. he wants to see me more often since that tumor growth
2. I need frequest chest CTs since I have lovely nodules in my lungs
3. my pelvic pain
I have seen this guy since December 2007 and each year/meeting I tell him about whatever pain i'm having ANd that sex is impossible to have (sorry if it's TMI)...
for some reason for the first time my NF doc seemed to CARE about the lack of sex part...and he apologized to me for the disservice he has caused me...which was weird. He suggested I try a nerve entrapment (since it is thought that I have ilio inguinal neuralgia) and then have sex...and to also see if that helps the pain. So I'm getting that done at the end of this month.
I'm also getting a chest CT AND a pelvic MRI in about a week and a half.
I KNOW IT IS STRANGE BUT THE PELVIC MRI BETTER TELL ME SOMETHING! I say I want a tumor to be there but PLEASE UNDERSTAND I am not asking to have cancer! I'm asking to have a visible Neurofibroma tumor, like the last one I had. While this one causes debilitating pain, as long as I can be medicated for that pain spell time, I am fine with NOT having surgery. I had surgery last time because the pain became constant. I don't want surgery unless this new pain becomes constant. If nothing is there, I will go out of my mind.
I just want answers, you guys! That's it!
Not lookign forward to a nerve entrapment shot, but I AM curious as to what it will do. We'll see. And perhaps I'll force Gabapentin down tosee if it does cut down on my pain spells.
That's all I want to say!
On Pelvic Pain
A few months ago (February), I made this video:
In this video, I was describing my recovery from my SECOND abdominal surgery, and how I was feeling from there pain wise. At the time, I was on 2400 mg of gabapentin. But a few days before I actualy made this video, I had a TERRIBLE case of bronchitis. I had so much medicine to take that I stopped taking the Gabapentin. It made me terribly 'foggy' and I was having so much trouble participating in class discussions.
I was taking the Gabapentin because after my surgery, I had terrible referred pain- exactly opposite of my surgical area was this intense burning sensation. Gabapentin saved me! But I realized a week after stopping the Gabapentin that I no longer had that burning sensation! So I stopped it for good. It made me WAY loopy. I couldn't focus, I couldn't remember words, I felt like I was flying...so glad to not have to take it anymore....
I bring up the Gabapentin because in that video, I mentioned my right side pelvic pain not being NEARLY as bad as the pain was when my left side tumor was growing.
I think I could say that because Gabapentin was in my system.
Though I don't have burning referred pain anymore...oh my god. My pelvic pain has gotten worse.
Every month, the pain intensifies. And every month the pain spell lasts longer. Except for one month- February- I went crazy and started taking Gapabentin again, opposite of cold turkey, mind you. In stead of working my way back up, I started back at 2400 mg a week. I was so drugged up. And so hungry. I gained 10 pounds! Then Comps prep began in March and I stopped taking it again....
My NF doctor tells me I'm doing a disservice to myeslf not taking the medicaiton. I know I know but I hate being drugged up. I don't have much after effects from Oxycodone anymore. It's almost like tylenol now. I take one, and it lasts for about 20 minutes, 2 and it kicks in immediately (almost) but lasts an hour- 2 tops. One night, I woke up every two hours due to extreme pain. So I took 1 every two hours (which is about equivilant to 2 every 4 - 6 hours- my prescription allows me to take 1-2 every 4 to 6 hours)
On taking Oxycodone.
So yes, I take Oxycodone. And yes, i take a good amount of it. It bugs me though because every time I talk about it, people warn me not to get addicted.
This angers me.
I know people care about me, but this angers me.
I have pain that NOT EVERYBODY goes through. I have nerves that are shredding me up. It's either that, or I have a tumor growing that's shredding me up. Oxycodone is the only thing that helps me. I have unfortunately developed a tolerance to it, but I am quite certain I will not be addicted to it. Tolerance is quite different from dependent! And I'm quite certain that if 3 doesn't work that I'm not moving up to 4- I am getting a new pain medication.
My pain spells last 2 weeks. In those two weeks, it's a chronic, burning, pulsating, pulverizing, grinding, pulling pain. I do my best to NOT take an oxy- to stick it out...but then my leg becomes wobbly and i want to pass out. This is why I take it. I don't feel like I take enough to become dependent on it! I think I would be quite upset if I ran out of pills in the middle of a pain spell and couldn't get medicine, but I would be able to HANDLE it- it would be hard but it' snot like i would go into withdrawals.I would just be in massive pain.
And when I write this, it makes me feel like I'm justifying myself as an addict would, which is ridiculous because I'm not an addict, so I would appreciate it if any of you reading this will just TRUST ME and LEAVE ME ALONE about it.
I used to think of being on this medication as a stigma because a lot of people DO overdose or take it JUST for the loopy feeling they get but --
1. I don't GET loopy on this mediation!!! It just eases my pain. I don't get high! Just talkative....and happy...happy because i'm pain free..perhaps it's a marijuana type effect, but i don't YEARN for this feeling. I just want my god damn pain to go away!
2. I NEED the medicine. I have a REAL problem. So I shouldn't be ashamed.
so please stop bothering me.
The Mental and Physical Exhaustion of Pain
I can't get out of bed so I'm late to work or I don't go in at all...it's awful. And when I DO get relief, I am just holding my breath for the next wave to come at me. I'm scared it will occur when I'm at work because if it does, I have to stop what I'm doing until the oxy kicks in.
The pain has also moved. before it was my lower right pelvis. now it's on my hip/near my hip/mainly on the bone. It gets REALLY warm. My leg gets wobbly if I don't take anything as I mentioned above. It's awwwfulllll.
And then it ends...just like that....pain all night then boom, the next day it's gone.
While it's a relief, my body....is just so TIRED. And for about a week after the spell is over.
What will be going on this month
i don't keep a written journal/calendar of this pain (though I should) but I have realized that this pain coincides with my period My pain doctor said something that hormones could trigger the nerves....maybe that's it. But the pain is just so....bad. The other day, when pain lasted all night, I actually cried.
Anyway, I met with my NF doctor a couple of weeks ago for several reasons:
1. he wants to see me more often since that tumor growth
2. I need frequest chest CTs since I have lovely nodules in my lungs
3. my pelvic pain
I have seen this guy since December 2007 and each year/meeting I tell him about whatever pain i'm having ANd that sex is impossible to have (sorry if it's TMI)...
for some reason for the first time my NF doc seemed to CARE about the lack of sex part...and he apologized to me for the disservice he has caused me...which was weird. He suggested I try a nerve entrapment (since it is thought that I have ilio inguinal neuralgia) and then have sex...and to also see if that helps the pain. So I'm getting that done at the end of this month.
I'm also getting a chest CT AND a pelvic MRI in about a week and a half.
I KNOW IT IS STRANGE BUT THE PELVIC MRI BETTER TELL ME SOMETHING! I say I want a tumor to be there but PLEASE UNDERSTAND I am not asking to have cancer! I'm asking to have a visible Neurofibroma tumor, like the last one I had. While this one causes debilitating pain, as long as I can be medicated for that pain spell time, I am fine with NOT having surgery. I had surgery last time because the pain became constant. I don't want surgery unless this new pain becomes constant. If nothing is there, I will go out of my mind.
I just want answers, you guys! That's it!
Not lookign forward to a nerve entrapment shot, but I AM curious as to what it will do. We'll see. And perhaps I'll force Gabapentin down tosee if it does cut down on my pain spells.
That's all I want to say!
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