Sunday, February 27, 2011
Well, Have I said Here we go again????
Yep here we go again....I am presently in Baltimore at my cousin Vannas...Thank God for family...Vannie and I have really talked and talked....good times..she has listened to my vent and rants and crying jsgs this past two days...I am not sure how I feel ....I am disappointed...I wanted a surgery or something to fix it right now....well my friends no quick fixes here....and she has been there to help me thru those feelings...I appreciate her so much...I am soooooo lucky.
First of all we have to play the insurance game and let me say...my insurance is wonderful...I have only had to pay my deductibles...I am very very lucky in that respect and have to thank my husband..he works very hard to provide that for me....he is a good man...HE is another chapter...lol.....At any rate according to protocol and I am sure to save themselves money I have to have cortizone shots in my back...from the way the doctor explained it to me they do not really expect them to work but this will tell them exactly which nerve is the bad guy and then they can go in and fix it....so that is where we are now. I have to have shots in my back and they want them not to work so they can fix me...that is kind of crazy....lol...least I think so. Ofcourse it might be because if they can pin point it maybe they can do a less invasive surgery...that would be cool....I just would like to be healthy and fixed....in a perfect world....thats what was just on tv...yeah in a perfect world I would not hurt and could walk....
Well Dr. Nair did tell me I have CES...he finally said the words...I had read my records and it said it but he never said it so in honesty I thought it must not be that big of a deal...well let me tell you. It is a very big deal...He told me Friday that the nerve damage I have may get some better but in his opinion the nerve damage that is done is usually permanent...it can get better but...no cure out there and a life time issue....I guess I am saying it right...it ain't gonna go away...that kind of devistates me...I am having a hard time accepting that my body is going to act like this...it pisses me off...and it makes me sad....sad that I may never beable to just jump up and answer my front door....sad that I can't stand any longer than to clean up my kitchen...if I have to empty the dishwasher I am had...it is crazy...but atleast I know and now I know what I have to deal with...it will just take some getting used to.
Everyone has been sending me thier best wishes and that is wonderful...it really does keep me going...some days...other days I want to scream at people and tell them they have no idea how MY pain feels and try as they may my family ie: husband, mother and son...have not a clue or they hurt just as bad....no sympathy...lol..I know my family has all the sympathy in the world for me ..I truely do...they love me to pieces...but they don't let me get my feelings out because it hurts them to see me hurt and sometimes I just want to cry and get it out....I have done that so much since I saw Dr. Nair and he used the word permanant...it is good that I am here...my family, out of love, does not let me cry...they do not let me feel....here I can cry and Vanna understands as she battles MS...it seems like and up hill battle now....before I thought I would conquor this..now I know I just have to tackle it in a different way....crazy crazy....it is crazy that I am going thru this....it is crazy that my family is going thru this...
Ok that is all for the night...I am tired and I need to take my night meds and get some sleep in ....busy day tomorrow...
nite all...peace, love, and painfree nights to you all....xoxo
First of all we have to play the insurance game and let me say...my insurance is wonderful...I have only had to pay my deductibles...I am very very lucky in that respect and have to thank my husband..he works very hard to provide that for me....he is a good man...HE is another chapter...lol.....At any rate according to protocol and I am sure to save themselves money I have to have cortizone shots in my back...from the way the doctor explained it to me they do not really expect them to work but this will tell them exactly which nerve is the bad guy and then they can go in and fix it....so that is where we are now. I have to have shots in my back and they want them not to work so they can fix me...that is kind of crazy....lol...least I think so. Ofcourse it might be because if they can pin point it maybe they can do a less invasive surgery...that would be cool....I just would like to be healthy and fixed....in a perfect world....thats what was just on tv...yeah in a perfect world I would not hurt and could walk....
Well Dr. Nair did tell me I have CES...he finally said the words...I had read my records and it said it but he never said it so in honesty I thought it must not be that big of a deal...well let me tell you. It is a very big deal...He told me Friday that the nerve damage I have may get some better but in his opinion the nerve damage that is done is usually permanent...it can get better but...no cure out there and a life time issue....I guess I am saying it right...it ain't gonna go away...that kind of devistates me...I am having a hard time accepting that my body is going to act like this...it pisses me off...and it makes me sad....sad that I may never beable to just jump up and answer my front door....sad that I can't stand any longer than to clean up my kitchen...if I have to empty the dishwasher I am had...it is crazy...but atleast I know and now I know what I have to deal with...it will just take some getting used to.
Everyone has been sending me thier best wishes and that is wonderful...it really does keep me going...some days...other days I want to scream at people and tell them they have no idea how MY pain feels and try as they may my family ie: husband, mother and son...have not a clue or they hurt just as bad....no sympathy...lol..I know my family has all the sympathy in the world for me ..I truely do...they love me to pieces...but they don't let me get my feelings out because it hurts them to see me hurt and sometimes I just want to cry and get it out....I have done that so much since I saw Dr. Nair and he used the word permanant...it is good that I am here...my family, out of love, does not let me cry...they do not let me feel....here I can cry and Vanna understands as she battles MS...it seems like and up hill battle now....before I thought I would conquor this..now I know I just have to tackle it in a different way....crazy crazy....it is crazy that I am going thru this....it is crazy that my family is going thru this...
Ok that is all for the night...I am tired and I need to take my night meds and get some sleep in ....busy day tomorrow...
nite all...peace, love, and painfree nights to you all....xoxo
Saturday, February 19, 2011
Here we go again.....
Seems like it has been forever since I have written in here...told you it would sporadic...CES is a slow moving syndrome so not much changes and therefore not much to say I guess.
Although truth is things have changed for me...I have a reherniation at L3, L4, L5 and S1....sooooooooo I am off to seem my neurosurgeon at John Hopkins Hospital in Baltimore Maryland. I am rather disappointed but I knew some thing was going on...my left leg has really been bothering me...numb, yet painful, sharp pains in my feet, and my toes...omg toe pain is horrible...lol...just horrible, muscle cramps...then if I stand to long I get a pain in my left butt cheek that goes clear down to my toes and my toes feel like they are cramp up toward my shins...my bladder control seems to come and go and I fight constipation all the time....I try to eat lots of veggies and fruits...I am sure it is the narcotics and they have upped them again...but...I cannot function without them. Some days I can't walk with them. At any rate I had xrays taken and an MRI and they both show more herniation...My GP said I need to see Dr.Nair again and I should go prepared to stay....lol....Last time I went to him for a Drs. app't I was in Baltimore for 3 weeks!!! Thank goodness for good family...I am soooooo lucky to have them....Nathan and Vickie and Mom, Vanna and Roxanne....I could not ask for better.....I love them all and am very appreciative...I need to find away to let them know it.....
So here is what is going on with my body at the present time....Sexual dysfunction is a problem to people that suffer from CES...we can lose all sensation, partial, it is different for everyone...At first I was numb in what is called the Saddle area..that is considered any area that is covered if you were sitting on a saddle..and I was numb down the inside of my legs...down to the my big toe and the one next to it...well feeling is starting to come back and I want all the feeling back. I have read other peoples story on this and it is pretty true to form....it is like you get there but can't jump off the cliff....the big "O" just does not happen...Thank goodness there are other ways to enjoy sex and your partner...At first I could not handle penetration, it was very painful...I am getting some sensation back now but not like it was....
Although truth is things have changed for me...I have a reherniation at L3, L4, L5 and S1....sooooooooo I am off to seem my neurosurgeon at John Hopkins Hospital in Baltimore Maryland. I am rather disappointed but I knew some thing was going on...my left leg has really been bothering me...numb, yet painful, sharp pains in my feet, and my toes...omg toe pain is horrible...lol...just horrible, muscle cramps...then if I stand to long I get a pain in my left butt cheek that goes clear down to my toes and my toes feel like they are cramp up toward my shins...my bladder control seems to come and go and I fight constipation all the time....I try to eat lots of veggies and fruits...I am sure it is the narcotics and they have upped them again...but...I cannot function without them. Some days I can't walk with them. At any rate I had xrays taken and an MRI and they both show more herniation...My GP said I need to see Dr.Nair again and I should go prepared to stay....lol....Last time I went to him for a Drs. app't I was in Baltimore for 3 weeks!!! Thank goodness for good family...I am soooooo lucky to have them....Nathan and Vickie and Mom, Vanna and Roxanne....I could not ask for better.....I love them all and am very appreciative...I need to find away to let them know it.....
So here is what is going on with my body at the present time....Sexual dysfunction is a problem to people that suffer from CES...we can lose all sensation, partial, it is different for everyone...At first I was numb in what is called the Saddle area..that is considered any area that is covered if you were sitting on a saddle..and I was numb down the inside of my legs...down to the my big toe and the one next to it...well feeling is starting to come back and I want all the feeling back. I have read other peoples story on this and it is pretty true to form....it is like you get there but can't jump off the cliff....the big "O" just does not happen...Thank goodness there are other ways to enjoy sex and your partner...At first I could not handle penetration, it was very painful...I am getting some sensation back now but not like it was....
Sunday, February 6, 2011
Happy Anniversary to me......and CES....
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Yesturday was my 1 year annivesary for my back surgery and my joining the CES club...wooohooo...let's celebrate...NOT...Have I said how sick I am of this...bout a thousand times you say????? Surely not...yes I do have just a hint of sarcasm...I thought for sure this would be done with by now...I am tired of dealing with this...I want it over...Happy Anniversary...big whip....lol...can we tell I am a happy camper right now??? I remember how good I felt when I woke up and I had no leg pain...then I realized my leg was numb and I was so doped up I didn't know I was in the world much less in pain...now I deal with narcotics and the after effects of them...Yes dears....constipation seems to be a sign of the times lately for we sufferers....could it be the moon???? lol.....I have decided to turn my life into a comedy routine ...I know in all this depression, weight gain, sexual dysfunction and uncontrolable farts there has to be something to laugh about..I mean I make Maxine look like Jackie O....and that is hard...cause I look like Maxine now.....I am one year post op....I really thought I would be up and running...well I would like to be up and walking...somedays I am...somedays I am not...I wish spring was here...that will help tremendously....I am sure of it...lack of sunshine...hmmmmm.......poop problems....yep....sounds like a new song title to me......."Poopers in the Night"....by Frankly I don't give a damn.....lol....Ahhhhhhhhhh the life of Ces....and this too shall pass....
I have been having issues that are the same issues I have had for the past year...I can read this and see yes...I have improved....but I have just moved on to other tests or trials....weight gain....I so want to lose weight...it is crazy...one of the medications that I have has side effects that include weight gain...woo hoo...I love that....then sexual dysfunction...I wonder why I am worrying about this now...the only thing I can contribute it to is that I am finally feeling better and want sex...ummmmmmmmm yeah....I am 56 NOT dead....I love sex...I just wish I could feel it now...feel it to the point of the big O....lol...I find that getting just to the brink of no return and reaching that momentous moment is always left just out of reach....thank you...it is like going bungy jumping and dressing up for it and gathering every fear in you soul and putting yourself on that steel platform and all strapped up and praying and .......ooopsss no more jumps today....call us next week...thank you...sorry no returns....mother nature the wind changed you know...come again next week.....yeah right...I wish I could come next week....lol...ok....and the worst thing is ...not a thing you can do about it except wait it out...nerves heal soooo slow....it is crazy...or physical therapy and then some...I am seriously trying to walk on the tread mill every day...since Christmas it has been really hit and miss....but I am trying...and I cannot say I always eat correctly but I am aware of what I eat now and I find myself trying to eat healthier...I would love to drop about 50 lbs....I also have a yoga book that has work outs in it...I am thinking of stretching some muscles that way too...will have nothing else to do after the kids move out..
Ok chickies....here is to a pain free night for you....peace and love,
LYnn
Yesturday was my 1 year annivesary for my back surgery and my joining the CES club...wooohooo...let's celebrate...NOT...Have I said how sick I am of this...bout a thousand times you say????? Surely not...yes I do have just a hint of sarcasm...I thought for sure this would be done with by now...I am tired of dealing with this...I want it over...Happy Anniversary...big whip....lol...can we tell I am a happy camper right now??? I remember how good I felt when I woke up and I had no leg pain...then I realized my leg was numb and I was so doped up I didn't know I was in the world much less in pain...now I deal with narcotics and the after effects of them...Yes dears....constipation seems to be a sign of the times lately for we sufferers....could it be the moon???? lol.....I have decided to turn my life into a comedy routine ...I know in all this depression, weight gain, sexual dysfunction and uncontrolable farts there has to be something to laugh about..I mean I make Maxine look like Jackie O....and that is hard...cause I look like Maxine now.....I am one year post op....I really thought I would be up and running...well I would like to be up and walking...somedays I am...somedays I am not...I wish spring was here...that will help tremendously....I am sure of it...lack of sunshine...hmmmmm.......poop problems....yep....sounds like a new song title to me......."Poopers in the Night"....by Frankly I don't give a damn.....lol....Ahhhhhhhhhh the life of Ces....and this too shall pass....
I have been having issues that are the same issues I have had for the past year...I can read this and see yes...I have improved....but I have just moved on to other tests or trials....weight gain....I so want to lose weight...it is crazy...one of the medications that I have has side effects that include weight gain...woo hoo...I love that....then sexual dysfunction...I wonder why I am worrying about this now...the only thing I can contribute it to is that I am finally feeling better and want sex...ummmmmmmmm yeah....I am 56 NOT dead....I love sex...I just wish I could feel it now...feel it to the point of the big O....lol...I find that getting just to the brink of no return and reaching that momentous moment is always left just out of reach....thank you...it is like going bungy jumping and dressing up for it and gathering every fear in you soul and putting yourself on that steel platform and all strapped up and praying and .......ooopsss no more jumps today....call us next week...thank you...sorry no returns....mother nature the wind changed you know...come again next week.....yeah right...I wish I could come next week....lol...ok....and the worst thing is ...not a thing you can do about it except wait it out...nerves heal soooo slow....it is crazy...or physical therapy and then some...I am seriously trying to walk on the tread mill every day...since Christmas it has been really hit and miss....but I am trying...and I cannot say I always eat correctly but I am aware of what I eat now and I find myself trying to eat healthier...I would love to drop about 50 lbs....I also have a yoga book that has work outs in it...I am thinking of stretching some muscles that way too...will have nothing else to do after the kids move out..
Ok chickies....here is to a pain free night for you....peace and love,
LYnn
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