It has been over two months since I last updated!
First of all I have to say that I am feeling MUCH better now than I was when I wrote an entry. That was one HELL of a pain spell. It didn't go away for a month. It was hell. And Narcotics gut is definitely also hell. But I gotta do what I gotta do. Haven't needed to take any for a long time, so maybe that spell bought me some pain free time haha.
When I do have pain though (it doesn't last so long), it centers on one new area only. A little concerned about that, but we'll see what happens...
I have headaches off and on which are similar to headaches I had when my facial plexiform grew. When I cough or open my mouth wide, I feel a strain on my head right above my temple. This is where my skull has been 'facelifted' from the plexiform. It's a little disconcerting. My next brain MRI isn't until December.
I joined an NF support group. It only meets for a month. My doctor wanted me to do it. It's a support group/wellness class. Most people in this group (all FIVE of us) are very self conscious about their appearance thanks to NF or very anxious about their NF. Or bitter. I've been to hell and back with other illnesses (namely CANCER) so I am not as strongly anxious, self conscious, and bitter as my groupmates are. Maybe my positive energy will help them?I don't know. We have to do a lot of relaxation exercises- these things to NOT help me so pretty much I lie on my homework. I was taught these very same exercises during my pain psychotherapy classes and they also didn't help me. I can't keep my attention long - so it's just pointless.
I appreciate meeting my groupmates though. I hope we become friends. One has NF1 like me, but hers manifested differently. She has more outer nodules like my mom, but at 3 years old she lost her eye. She's the only one in her family with the disorder. Because of the growths and the eye, she is very self conscious. To me she looks great, but of course, unless she's encouraged and around a lot of positive people, she will never feel that way. Two have NF2. One is deaf in one ear and wears a hearing aid in her other ear. She has some outer nodules and tumors on her brain/spine. She seems to be doing well, just anxious about doctor's appointments, etc. Having to go to the doctor a LOT is stressful. The ohter perosn with NF2 is in a wheelchair, my guess, from having tumors on her spine so that she can't walk. she can hear for now. her mother grew deaf at a later age, so she is expecting to grow deaf later. She is very random and talks through relaxation exercises (for example, we'll get a rhetorical question to think about and she'll answer it....). I hope she gets the hang of it soon... Finally there's a man with schwannomatosis. He is in SEVERE pain. We can commiserate a lot, though I know he is in far worse pain than I could ever be. We take the same medications though. He hates the medicines, so doesn't take them unless he's about to shake and pass out. I feel terribly for him.
It's definitely valuable to take this "course" just for the sake of meeting these people and see how they cope and possibly help each other. Other than that, all these exercises can just kiss my butt. I'm stubborn I know.
I also took a series of neuro-psych testing in early June. My NF doctor wanted me to do these to see if NF has affected my ability to learn. Most poeple with NF have some sort of learning disability. Turns out (thankfully) I'm pretty normal, but I have a non verbal/spacial 'weakness', but my doctor falls short of calling it a disability. The 'weakness' evolves around note taking, the inability to draw shapes I see, or to build shapes I see if the shape has been flipped to a certain side or something like that. This is probably why I cannot for the LIFE of me beat my husband in Connect Four. :-P
I have SOME ADD characteristics but not enough to warrant a diagnosis. ADD is also common in people with NF.
So otherwise, all is fine. I'll be updating more for sure in the near future.
First of all I have to say that I am feeling MUCH better now than I was when I wrote an entry. That was one HELL of a pain spell. It didn't go away for a month. It was hell. And Narcotics gut is definitely also hell. But I gotta do what I gotta do. Haven't needed to take any for a long time, so maybe that spell bought me some pain free time haha.
When I do have pain though (it doesn't last so long), it centers on one new area only. A little concerned about that, but we'll see what happens...
I have headaches off and on which are similar to headaches I had when my facial plexiform grew. When I cough or open my mouth wide, I feel a strain on my head right above my temple. This is where my skull has been 'facelifted' from the plexiform. It's a little disconcerting. My next brain MRI isn't until December.
I joined an NF support group. It only meets for a month. My doctor wanted me to do it. It's a support group/wellness class. Most people in this group (all FIVE of us) are very self conscious about their appearance thanks to NF or very anxious about their NF. Or bitter. I've been to hell and back with other illnesses (namely CANCER) so I am not as strongly anxious, self conscious, and bitter as my groupmates are. Maybe my positive energy will help them?I don't know. We have to do a lot of relaxation exercises- these things to NOT help me so pretty much I lie on my homework. I was taught these very same exercises during my pain psychotherapy classes and they also didn't help me. I can't keep my attention long - so it's just pointless.
I appreciate meeting my groupmates though. I hope we become friends. One has NF1 like me, but hers manifested differently. She has more outer nodules like my mom, but at 3 years old she lost her eye. She's the only one in her family with the disorder. Because of the growths and the eye, she is very self conscious. To me she looks great, but of course, unless she's encouraged and around a lot of positive people, she will never feel that way. Two have NF2. One is deaf in one ear and wears a hearing aid in her other ear. She has some outer nodules and tumors on her brain/spine. She seems to be doing well, just anxious about doctor's appointments, etc. Having to go to the doctor a LOT is stressful. The ohter perosn with NF2 is in a wheelchair, my guess, from having tumors on her spine so that she can't walk. she can hear for now. her mother grew deaf at a later age, so she is expecting to grow deaf later. She is very random and talks through relaxation exercises (for example, we'll get a rhetorical question to think about and she'll answer it....). I hope she gets the hang of it soon... Finally there's a man with schwannomatosis. He is in SEVERE pain. We can commiserate a lot, though I know he is in far worse pain than I could ever be. We take the same medications though. He hates the medicines, so doesn't take them unless he's about to shake and pass out. I feel terribly for him.
It's definitely valuable to take this "course" just for the sake of meeting these people and see how they cope and possibly help each other. Other than that, all these exercises can just kiss my butt. I'm stubborn I know.
I also took a series of neuro-psych testing in early June. My NF doctor wanted me to do these to see if NF has affected my ability to learn. Most poeple with NF have some sort of learning disability. Turns out (thankfully) I'm pretty normal, but I have a non verbal/spacial 'weakness', but my doctor falls short of calling it a disability. The 'weakness' evolves around note taking, the inability to draw shapes I see, or to build shapes I see if the shape has been flipped to a certain side or something like that. This is probably why I cannot for the LIFE of me beat my husband in Connect Four. :-P
I have SOME ADD characteristics but not enough to warrant a diagnosis. ADD is also common in people with NF.
So otherwise, all is fine. I'll be updating more for sure in the near future.
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