So it has been a month since I last posted. Last month I was beyond miserable. Everything hurt. I couldn't really eat. I always wanted to vomit. I had to walk with a cane.
I'm so much better now!
The only residual affect of my surgery is "sensory nerve pain" as my DB (douchebag) surgeon called it. When i saw him Sept 8. he hardly looked at me and did not even look at my incision area.The appointment was less than 10 minutes. The only good thing out of that appointment was him agreeing to write a letter on my behalf to disability services in case I need more time on my assignments during this recovery period. I didn't know how long the muscle pain and nausea, etc would last. THANKFULLY I haven't needed it, but I was glad to have a plan in case I DID feel terrible. I can ask for an extension through the end of October, but i won't be using it. In fact, when we had to sign up for presentations for my field experience class, I signed up for the first day to get it overwith. So glad I did, but I was able to present hunched over slightly and feeling very blah, so I think I can do anything now :) (except pass this law class I am taking! kidding! but I am scared!)
Anyway, since I have that tingling feeling, I take Gabapentin. . I was prescribed this drug for my tumor pain- it was supposed to keep the pain "at bay" but it certainly did not. I was taking about 1200 mg a day or less, and it made me really crazily brainfogged. The worst of the tingling, though, is on my right side, parallel to where my left tumor was removed. It feels like a cig butt burning me. It sucks. Soo I started out by taking 1500 mg of gabapentin, then I moved up to 1800, now I jumped to 2400. It MOSTLY works, at least to decrease the intensity of the burning feeling. And since I take it regularly, my entire belly is no longer as pins-and-needly. Gabapentin no longer makes me as woozy as it did when I first started. It helps with sleep! But I can function. I couldn't function before when I had a low dosage! Funny how people get used to drugs.
Now that the tumor is gone, I no longer have chronic pain in my left side! I do, on occasion, get terrible pain in my right pelvis. Sometimes it extends from my pelvis to the area that burns. And hat SUCKS. But the pain that originates in my right pelvis is the same pain that came with my left-side tumor pain. This pain started in April. I am pretty sure I mentioned this right side pain before. I was told this right side pain isn't REAL pain, it was REFERRED pain. that it would go away when my tumor was removed. GUESS WHAT? The pain is still there, still steady. And when the pain comes, I remember my despair from my left side pain.
Thankfully I can take OxyC (oxycodone) for this, which mostly helps, but sometimes it can get so bad OxyC doesn't always work at ALL. It didn't always work with my tumor before it was removed. My doctor told me before my surgery that I CAN take two, but, at the time, ONE would make me really woozy and I'd have crazy dreams. I took 2 OxyC while in the hospital and for about a week upon my discharge with no feeling of wooziness and no crazy trips, so I should be able to tolerate it now, except I take 2400 mg of gabapentin a day, so I have to be careful about taking the OxyC too. I CAN take both (taking the oxyC only with "breakthrough" pain- my doctors know about the medicines I am taking- don't worry- they are the ones who told me how much to take when, etc), but I still worry about taking both, for the sake of my precious consciousness! haha.
So I can deal with this right side pain (even though I am sure it will be years before a tumor becomes viseable) since pain meds MOSTLY work. I can deal with my "tingling" belly.
But what if it gets worse?
NF just really sucks. I know people have it WAY worse than I do, but it really just sucks to be in pain. And this is not the pain anybody can describe- it's a type of pain that causes the bearer so much despair. And I will reveal here: I told my primary care and pain doctors (best doctors I have) that if nothing could be done for my pain I just don't want to live anymore. I doubt many of you would understand this. But I really couldn't deal with it anymore. Thankfully something WAS done about it and I am going on one month without any NF pain there. First time in 7 years! But there can't be any celebration since my right side often hurts. Every time my right side hurts me i remember the feeling of despair I had when my left side did. I call this kind of pain a "10 alarm fire"
I hope none of you ever experience this kind of pain.
I mean, I had CANCER and never had that kind of pain with it. I had what I thought was chest pain (since it was in my upper stomach), and it was uncomfortable, but not UNBEARABLE. The pain I have with NF is almost always unbearable.
I hate dealing with this right now because 1) I am in grad school and need all my attention devoted to reading, paper writing, and doing WELL 2) I have an internship and I am really doing my best to show professionalism, but when the pain comes, I can't work. Or go to class. I can just pop pills, lie in bed, press a heating pad against me and wallow in self pity. I DO try to go to work. I've gone to work after having no sleep because of pain, I've written papers as I've cried, I've survived class while pain has taken over part of my body. I have found ways to deal with it, pretending to act as if nothing's wrong. But it sucks. If i miss anything, I usually miss work since my job is flexible and the tasks I have to do can be done there or at home. That way I could rest before class. But BLAH I hate missing work. thankfully they understand. My boss is REALLY wonderful. I might have mentioned in my last blog- I don't know... but she visited me in the hospital and brought me a stuffed animal of the Institute's mascot!
Oh well. Other than pain, and being crazed with school, and cooking for my sick husband, life is good.
I'm so much better now!
The only residual affect of my surgery is "sensory nerve pain" as my DB (douchebag) surgeon called it. When i saw him Sept 8. he hardly looked at me and did not even look at my incision area.The appointment was less than 10 minutes. The only good thing out of that appointment was him agreeing to write a letter on my behalf to disability services in case I need more time on my assignments during this recovery period. I didn't know how long the muscle pain and nausea, etc would last. THANKFULLY I haven't needed it, but I was glad to have a plan in case I DID feel terrible. I can ask for an extension through the end of October, but i won't be using it. In fact, when we had to sign up for presentations for my field experience class, I signed up for the first day to get it overwith. So glad I did, but I was able to present hunched over slightly and feeling very blah, so I think I can do anything now :) (except pass this law class I am taking! kidding! but I am scared!)
Anyway, since I have that tingling feeling, I take Gabapentin. . I was prescribed this drug for my tumor pain- it was supposed to keep the pain "at bay" but it certainly did not. I was taking about 1200 mg a day or less, and it made me really crazily brainfogged. The worst of the tingling, though, is on my right side, parallel to where my left tumor was removed. It feels like a cig butt burning me. It sucks. Soo I started out by taking 1500 mg of gabapentin, then I moved up to 1800, now I jumped to 2400. It MOSTLY works, at least to decrease the intensity of the burning feeling. And since I take it regularly, my entire belly is no longer as pins-and-needly. Gabapentin no longer makes me as woozy as it did when I first started. It helps with sleep! But I can function. I couldn't function before when I had a low dosage! Funny how people get used to drugs.
Now that the tumor is gone, I no longer have chronic pain in my left side! I do, on occasion, get terrible pain in my right pelvis. Sometimes it extends from my pelvis to the area that burns. And hat SUCKS. But the pain that originates in my right pelvis is the same pain that came with my left-side tumor pain. This pain started in April. I am pretty sure I mentioned this right side pain before. I was told this right side pain isn't REAL pain, it was REFERRED pain. that it would go away when my tumor was removed. GUESS WHAT? The pain is still there, still steady. And when the pain comes, I remember my despair from my left side pain.
Thankfully I can take OxyC (oxycodone) for this, which mostly helps, but sometimes it can get so bad OxyC doesn't always work at ALL. It didn't always work with my tumor before it was removed. My doctor told me before my surgery that I CAN take two, but, at the time, ONE would make me really woozy and I'd have crazy dreams. I took 2 OxyC while in the hospital and for about a week upon my discharge with no feeling of wooziness and no crazy trips, so I should be able to tolerate it now, except I take 2400 mg of gabapentin a day, so I have to be careful about taking the OxyC too. I CAN take both (taking the oxyC only with "breakthrough" pain- my doctors know about the medicines I am taking- don't worry- they are the ones who told me how much to take when, etc), but I still worry about taking both, for the sake of my precious consciousness! haha.
So I can deal with this right side pain (even though I am sure it will be years before a tumor becomes viseable) since pain meds MOSTLY work. I can deal with my "tingling" belly.
But what if it gets worse?
NF just really sucks. I know people have it WAY worse than I do, but it really just sucks to be in pain. And this is not the pain anybody can describe- it's a type of pain that causes the bearer so much despair. And I will reveal here: I told my primary care and pain doctors (best doctors I have) that if nothing could be done for my pain I just don't want to live anymore. I doubt many of you would understand this. But I really couldn't deal with it anymore. Thankfully something WAS done about it and I am going on one month without any NF pain there. First time in 7 years! But there can't be any celebration since my right side often hurts. Every time my right side hurts me i remember the feeling of despair I had when my left side did. I call this kind of pain a "10 alarm fire"
I hope none of you ever experience this kind of pain.
I mean, I had CANCER and never had that kind of pain with it. I had what I thought was chest pain (since it was in my upper stomach), and it was uncomfortable, but not UNBEARABLE. The pain I have with NF is almost always unbearable.
I hate dealing with this right now because 1) I am in grad school and need all my attention devoted to reading, paper writing, and doing WELL 2) I have an internship and I am really doing my best to show professionalism, but when the pain comes, I can't work. Or go to class. I can just pop pills, lie in bed, press a heating pad against me and wallow in self pity. I DO try to go to work. I've gone to work after having no sleep because of pain, I've written papers as I've cried, I've survived class while pain has taken over part of my body. I have found ways to deal with it, pretending to act as if nothing's wrong. But it sucks. If i miss anything, I usually miss work since my job is flexible and the tasks I have to do can be done there or at home. That way I could rest before class. But BLAH I hate missing work. thankfully they understand. My boss is REALLY wonderful. I might have mentioned in my last blog- I don't know... but she visited me in the hospital and brought me a stuffed animal of the Institute's mascot!
Oh well. Other than pain, and being crazed with school, and cooking for my sick husband, life is good.
I'm glad you're feeling better finally!
ReplyDeleteJust be careful with Oxys...because if you're not...they can be bad news.
Don't worry, I'm EXTREMELY careful. I don't take one every day, but when that NF pain comes, there's not much I can do other than taking 1 or 2 and wallowing until I can function again. And once It take 1 or 2 for that pain, I wait 8 hrs before taking another 1 or 2 again even if the dose didn't help!
ReplyDelete