Hi guys.....sorry it has been so long since I have been here but if you only knew....I have been in the hospital 3 times since my surgery on April the 12th...I am physically and mentally a wreck...I want to cry allll the time...I want to just go to sleep and get over this dream...I know this has to be a dream...or should we say nightmare....I am so tired of being in pain...I am tired of taking pills...I am tired of not being able to walk ...I am tired of numb stingy legs ...I am tired of having sausages for toes some times....I am tired of dealing with this syndrome....I am so angry....I have things I want to do.....
When I got hit with this re-herniation at L4 and L5 I was just getting back to being myself...you know I even fantasied about running to my car....I looked at the walk and thought...you could bounce yourself back into the car and take the dogs....lol...then reality hit me and my thought was noooooooooooo take it easy....well I took it easy...I did not try to run...I did not take my dogs to the park...I walked to the truck with my cane and went to physical therapy and worked ...well not here we are....back again....More physical therapy I am sure...I was walking on my tread mill....now I just look at it.....
I know I am fresh from the surgery....but this has just been such a rough one....I got out of the hospital and 3 or 4 days after I got out I had a on set of pain.....I have never had pain like this before....it was horrible...I ended up in the hospital with all kinds of test and stuff...I think I was in there for about 4 days...I have never experienced pain like that before.....the Drs said something about Arachanoiditis....it is basically a swelling of a membrane that covers the spinal theacal sac and spinal cord...you would be best to google it...lol...I have several times and just cannot get it out of my head....lol....I keep thinking of the setroind injection my insurance company said I had to have before I could have the surgery....steroid injections can cause this.....like I said google it. Isn't that something....insurance company saying you have to have something that can harm you first before you get what you need. I wonder if they knew about CES ....I mean really knew how it affects your body if they would demand such stuff.....makes one wonder....
At any rate I ended up in the hospital for about 3 or 4 days that time.....maybe longer....I am not sure...I really was in so much pain and on so much medication some of it is a blur....I remember one day I was begging ...I mean crying begging for something....this is a sad story....I don't know if I had called my hus band or if he had called me...but I was really in pain and needed something....I had like 4 nurses coming in and doing all they could do .....giving me the medication they could but I am telling you ...I was begging for pain meds....I asked them to knock me out....I cried ....wellll all this time...my cell phone was on and Jr was connected to it....he could not hang up and here I am begging for something for pain and crying my heart out....two of my Bible study friends were here and they hear it tooo....they said it was awful and Jr was beside himself....they said he cried his heart out....well truth is I barely remember it...now....I remember one of the nurses named Abby...she was sooooo sweet and was doing what she could....she touched my leg and I grabbed her hand and threw it off of me...and told her not so nicely to get her hands off of me...I will never forget the look in her face....I will never forget the pain...If you have CES you know th kind of pain I am talking about....the skin pain....you can't even stand to have your skin touched....that is the kind of pain....then throw in spasms...and cramps and back and groin pain....I have never had pain so bad....
The doctors came in and explained they were worried about the spider butt stuff...but they were not sure I had that...I think that is what he said...I am asking him when I go back on June 1st....I know my CES is still very much present....my left leg is really throwing a fit....I fell about a week to 10 days ago and hurt my knee....I fell in my bathroom and hurt my knee and my ankle...I was more worried about my ankle cause I fell down at moms and hurt it... I landed on a metal strip going out of moms house...the metal strip went right across my screws in my ankle and omg did it swell up....so anyway...it had a small bruise...and I did not think anything of it....crap I bruise all the time....I worry about hurting my back....not bruises....well it started to turn that ugly brown and yellow and seemed to get bigger...well now it is numb and tingly....so I go tomorrow to get my ankle xrayed and I am thinking I need my knee xrayed also....think I am going to request a xray of my knee also....it was so painful night before last ....you would not believe it...I could not touch it and the pills did not touch the pain....it was a horrible night....that was two nights ago. Now my left leg just feels numb and my ankle feels like it has rubber bands around it....and it feels like it swells sometimes ....it just feels like it did with my regular CES....funny when you get used to the symptoms and can put them where they need to go....I think that is recognizing your body.....knowing what is going on in you body is a must with CES and Arachanoiditis...patient education and taking charge and making your doctor understand....thank goodness I have understanding Doctors....he messes with my pain medication. He is or the pharmacy is they send me something different every time...last time I had percocet...this time I got oxycodone...it is crazy...
So....a couple of days after I got home I went to my General Practioner just to check in with him and tell him what they did and let him check out my incision...we discussed several things....pain management clinic...the surgery ....and they suggested that I sign up for disability...it was like a kick in the gut to me.....makes me feel like I am giving up.....they assured me it was not that at all and that they would do everything they could to help me...he said I had to face the fact that I would never work again...it is like he said ...I never know what my day will be right ....I am never really sure I can get out of bed....thank you CES....this syndome robs you of your life.....so anyway that was my doctors appointment....well that was on Friday...the boys came over and I literally spent the weekend in bed...I was sick....kind of like dope sick....but I wasn't...I had been taking my meds....well Monday morning I was sick...had diarreah and was trying to vomit at the smell of anything...did a couple of times .....well I ended up in the emergency room...I was have sweats...I mean soaking the sheets and me being soaking wet...it was horrible...well I was dehydrated and ended up being admitted and was in the hospital for 2 days...so that was my third time in the hospital...I am tired of being in the hospital....
Well like I said I am tired of being sick...I am tired of hurting....and I am just tired of watching my life pass me up....That is really how I feel I am tired of sitting here and watching.....I want to do so much...I want to be a housewife and clean my house...I want to beable to bend over and pick something up or put someing in the oven or dishwasher....funny the things that you miss ....stuff that is unreal become so important....emptying the trash...flushing the commode...(men!!!! grrrrrr).....laundry....just being able to load the dryer....but no bending...and if I do bend omg the crunch....I can hear it and feel it sometimes....it is CES I guess...
I can deal with this I suppose....I think I need to get myself together and I need to read and educate myself on the spider butt syndrome...and the CES....see what kind of progress our education is making.....so far from what I have read not much more info than there was 2 years ago ....I am looking education and knowledge....I wrote DR. OZ and so far I have not been answered...he probably does not know what CES or Arachnoiditis is....why should he...it is rare....I wonder just how rare it is....I think I will as them in the support group....
My support group really has helped me...just knowing there are others like me and others that really understand me and what is going on with my body....they answer the questions too....
Ok I have to run it is almost 4 am my time and I am tired...have to get up in a few hours....need to lay down....
Thank you for being interested in my blog.....peace and pain free days and nights be with you.....
take care.....Lynn xoxo
Thursday, May 19, 2011
Friday, April 29, 2011
It doesn't feel like I have CES today......
I should have checked the date of the last submittion to this blog was....I know it has been awhile since I have been here....Lots has changed...I have had my surgery and am 5 days post op....and I feel great...I can walk....only to Vannas kitchen and to the bathroom and feel wonderful....I went into this operation scared and not very optomistic...the first one just did not do it...I hurt every day of my life...this has been the most dibilatating situation I have ever found myself in....I find myself not being very optomistic...I have numb feet and tingling in my toes...the list goes on but they are all CES related...and the CES is here to stay until it decides to move on and heal that nerve! lol...go body go!!!! Just having the relief of being able to stand up without pain....so far....and only for a few mins...after all just had surgery 5 days ago and am suppose to take it easy...trouble is I have the narcotics to mask the pain and the pain in gone and I have all this wonderful energy that a bright spring day can give you...no back pain...my legs are not hurting....I would love to be raking leaves.....
So the hospital trip was a trip....none of them were familiar with CES... I had to tell them what it was...I was flabergasted....I mean this is a teaching hospital, and a Spinal and Neurological clinic....they study the spine and brain ....would they never have heard of it????? I mean I had to explain the syndrome to them....is it that rare? I had not had a bowel movement for about 4 days before I went to the hospital...just could not go....well the nurse at the hospital told me I would have to have a bowel movement before I got to leave...I told her I needed a laxative....that I had not went for a few days....she ask how many and it had been like 6 or 7 days....I was feeling miserable....so she complied .....I got the laxative and I had a bowel movement...she of course had to see it and was amazed at how much...then ofcourse there is the 2 or 3 diareahha bouts that follow the blockage....bowel movements are a big deal if you have CES...it is something you plan...and not one medical professional knows about it....or talks to you about it...I have not had one dr ask me how my bowels are....I have had bowel movements that made my stomach and rectum hurt and ache for days afterwards.....at any rate my nurse was amazed...she had apparently seen her first CES bowel movement....lol...I really think that it scares them to death when you say.."well now that you have mentioned it....." lol..you can just see thier jaws drop! I have had some very good doctors thru this journey.....my family has been there to support me...I just wish the pain would stop.....But the doctors and nurses has been wonderful........
OK dears, I must run...muy legs are botheing me....I guess I have to go thru the leg stuff again!@
nite all.....painfree night to you all!
So the hospital trip was a trip....none of them were familiar with CES... I had to tell them what it was...I was flabergasted....I mean this is a teaching hospital, and a Spinal and Neurological clinic....they study the spine and brain ....would they never have heard of it????? I mean I had to explain the syndrome to them....is it that rare? I had not had a bowel movement for about 4 days before I went to the hospital...just could not go....well the nurse at the hospital told me I would have to have a bowel movement before I got to leave...I told her I needed a laxative....that I had not went for a few days....she ask how many and it had been like 6 or 7 days....I was feeling miserable....so she complied .....I got the laxative and I had a bowel movement...she of course had to see it and was amazed at how much...then ofcourse there is the 2 or 3 diareahha bouts that follow the blockage....bowel movements are a big deal if you have CES...it is something you plan...and not one medical professional knows about it....or talks to you about it...I have not had one dr ask me how my bowels are....I have had bowel movements that made my stomach and rectum hurt and ache for days afterwards.....at any rate my nurse was amazed...she had apparently seen her first CES bowel movement....lol...I really think that it scares them to death when you say.."well now that you have mentioned it....." lol..you can just see thier jaws drop! I have had some very good doctors thru this journey.....my family has been there to support me...I just wish the pain would stop.....But the doctors and nurses has been wonderful........
OK dears, I must run...muy legs are botheing me....I guess I have to go thru the leg stuff again!@
nite all.....painfree night to you all!
Sunday, April 3, 2011
A new Doctor...a new surgery...a new day?
Well lots has happened since I have been here....I called and reported to Dr. Williams that the shots did not really help...they kept wanting to pin point me down to a percentage or something and the only thing I can tell them is the steroid shot dulled the pain...It did not take it away...it is still there, I still cannot stand to clean my whole kitchen...I still hurt when I get up and down...my legs still do not want to move as fast as they used to...they feel like they have minds of thier own...it is hard to explain...at any rate it seems because I did not tell them that I got atleast 50% relief from the shot they are not sure what to do with me so....I am off to see another Doctor...A Dr. Lemma....he is a big Orthopedic somebody at John Hopkins.....and a collegue of Dr.Nair....Dr.Nair said he would like to have a consult with Dr. Lemma and they they would decide what to do with me...lol...I he said that he was not sure surgery would help at this point at which point I asked him "So, what now...do I live on pain pills the rest of my life?" His answer was "I don't know".....again I have been crushed. There doesn't seem to be light at the end of this tunnel. I have an appointment this Wednesday the 6th to seen Dr. Lemma....and Dr. Nair said that I could plan on surgery a week later...so we will see what is going on then I guess. I seem to have all this crap to face and it seems to be out of my hands....I am tired of dealing with the CES...there has been so real change in that except today I noticed the my right butt cheek was numb...that is new...my toes feel like little fat sausages...and my legs are numb....sooooooooo hi ho hi ho it's off to ortho I go....lol.....I guess you have to laugh about it...I am tired of crying...simply tired of it.....more later......
Sunday, March 20, 2011
A new day...Another adventure...doesn't feel like it....
I don't feel like I have any adventure in my life anymore...I set in my bedroom or living room...I do manage to load my dish washer and do some laundry...I have broken down and hired someone to do the scrubbing and vaccumming and so on...If I ever get over this shit my house will be so clean...I promise you...now you can eat off my floors...any time you want and probably get a 7 course meal...the atmosphere right now is at about a 2 star.....lol...could be worse but I have seen better...my attitude still kind of sucks....I still cry at the drop of a hat. I guess that is OK...I know I am on an emotional roller coaster and I am trying to recognise that and owning it and changing it....It is just very very hard at times...
I am feeling let down by my husband ...and he is trying so hard...but it is like I cut him no slack....he works hard and I know he is tired...he is so good to me ...he will help me to the point of me thinking he is thinking I am useless and can't do it by myself...it is like I resent him for wanting to help me...it is crazy...I used to take care of him...it is my job...and that is how I looked at my house keeping...my job to take care of my family...I need to pull my own weight...now I do nothing..dishes if I can stand long enough to do them....I don't know what I really expect from him...he drinks ...and he drinks more than I like...I know it is is his outlet but I feel like he is trying to escape from me and I have no where to escape to...I don't know if I am mad at him, Ces, Life or myself for not handling this better....my husband is not drinking anymore....truth is probably less than he did before I had my legs broke or the disc exploded in my back and Ces entered my life....I just feel so alone in this...he always has taken care of me and now he can't fix it....and I resent him for it...maybe recognising the feelings will help me work thru them...misplaced anger...but then I have a right to be angry about legitimate things....he needs to calm his drinking down....I am tired of it, tired of CES...just tired in general...sometimes I think if I could just lay down and sleep...let my mind be empty...then I think this has nothing to do with CES but it does...if I was not afflicted by this syndrome I would not be having these thoughts and feelings...the emotional part of the CES is worse at times than the physical....the physical pain of CES can be controlled with a drug...the emotional pain of losing your independence and self worth is horrible...there is no drug that can take those feelings away and I have not quite hit on the formula for earning those feelings back..somewhere along the way I lost my feelings of self worth...life would go on if I was here or not...feeling very mortal too....but that is ok..we are...life is a gift....I know that deep down...I just need to remember it...Like I said the physical part of this is almost the easy part...it is the rest of it that is tiring...
Hope you all have pain free nights...and peaceful days...
I am feeling let down by my husband ...and he is trying so hard...but it is like I cut him no slack....he works hard and I know he is tired...he is so good to me ...he will help me to the point of me thinking he is thinking I am useless and can't do it by myself...it is like I resent him for wanting to help me...it is crazy...I used to take care of him...it is my job...and that is how I looked at my house keeping...my job to take care of my family...I need to pull my own weight...now I do nothing..dishes if I can stand long enough to do them....I don't know what I really expect from him...he drinks ...and he drinks more than I like...I know it is is his outlet but I feel like he is trying to escape from me and I have no where to escape to...I don't know if I am mad at him, Ces, Life or myself for not handling this better....my husband is not drinking anymore....truth is probably less than he did before I had my legs broke or the disc exploded in my back and Ces entered my life....I just feel so alone in this...he always has taken care of me and now he can't fix it....and I resent him for it...maybe recognising the feelings will help me work thru them...misplaced anger...but then I have a right to be angry about legitimate things....he needs to calm his drinking down....I am tired of it, tired of CES...just tired in general...sometimes I think if I could just lay down and sleep...let my mind be empty...then I think this has nothing to do with CES but it does...if I was not afflicted by this syndrome I would not be having these thoughts and feelings...the emotional part of the CES is worse at times than the physical....the physical pain of CES can be controlled with a drug...the emotional pain of losing your independence and self worth is horrible...there is no drug that can take those feelings away and I have not quite hit on the formula for earning those feelings back..somewhere along the way I lost my feelings of self worth...life would go on if I was here or not...feeling very mortal too....but that is ok..we are...life is a gift....I know that deep down...I just need to remember it...Like I said the physical part of this is almost the easy part...it is the rest of it that is tiring...
Hope you all have pain free nights...and peaceful days...
Sunday, March 13, 2011
Depression
OK here it is March 13th and I am a mess...I have been so depressed since I had the Doctors appointment in Baltimore...I just keep seeing/hearing him tell me so nonchalontely that "In my experience what you have not gotten back by now you won't get back"...I know it is his job and truthfully on a scale of 1 - 10 one being less traumatic and 10 being the worse case scenario of CES I am probably not close to a 10 even tho I feel like it....I am probably a 5 or 6....depends on the day....since my last appointment mentally I feel like a 12 and soaring....I just cannot get that out of my mind...I cannot accept it....Dr. Nair was very kind and immediately took charge of the situation and made arrangements for me to do what I had to do. I am not so sure he was impressed with me and my condition and for a doctor of his position that is a good thing...I learned long ago if you impress a specialist you could be physically in trouble...lol..(that comes from working in the atmosphere of medicine and hearing it from a doctor...lol)..now I just have to take the shots and get them done....I just can't stand this sitting around and waiting...waiting for what...to get better....not sure about that anymore...so do I settle? I never was good at settling...I need to get my mind off of this and get busy doing something....I need to quit feeling sorry for myself but it just will not go away...I cry at the drop of a hat...wonder if steroids make you emotional???
I have been thinking of getting counseling...I have so much going on with my life and I feel like I am in control of nothing...I feel like I am busting apart at the seams....it is a crazy life and now lets add CES...I am so angry ....I want to beat something or someone to death...I just want this to stop...I am over it...I am done with it...I want my life back.....I want to go somewhere with my dogs...I want to be able to wash my living room walls down...I just want to be able to clean my house and do the laundry without being reminded of CES...FUCK CES - period.
I feel like I am going thru the 5 stages of death according to Elizabeth Kubler Ross (?) (sorry Craig....I know Psych 101...you understand tho...momentary loss of memory...lol)
I cried and was sad when it happened to me....then I accepted it and decided that it could be worse and now I am pissed and I don't feel like barganing...there is nothing to bargin with...I want the feeling back in my toes.....I want to have an orgasm...I want to beable to have regular bowel movements without feeling gross about myself....then I feel guilty cause I feel this way....so go figure...have I progressed thru these stages or am I just having a bad day that has turned into a bad week, month...oh yeah I am working on year number 2....that was a reality for me toooo....I honestly thought when I had the first surgery I would get up and run out of that hospital with no leg pain and no back pain...and here I sit...looking at the same view and crying because I want to be outside or I need to pee and can't make it to the bathroom in time...you pick a reason.....I cry when I am happy ....I cry when I am sad...I am not sure what stage I am in now...I am not even sure I really care....
I used to love my life...now I just wish I had one...I feel consumed by CES...I know it could be worse and I am thankful that it isn't...but I don't have to like it and I have a right to be angry and sad...it is my body and my life I am mourning for...I just want to be like I was....I just want this all to end.... I don't like feeling like this and am going to call and make a doctors appointment...he needs to adjust some medication or something....I can't keep feeling sorry for myself like this and I see no light at the end of this tunnel....it makes me sad....I just am not happy at this moment and there is nothing anyone can do about it but me. I know that...so ...I guess I call the dr tomorrow...
Sorry if I am morbid today....it is what it is...lol...Johnna you will get that joke...btw...I love you too girly....you are a bright spot for me....ty ty ty.
I love how I write this thinking someone will actually read it...it is more of a diary for me...a way of venting and not laying this all out on my family...they are all so caught up in their own lives they don't need this on top of it...I will be ok...lol...someday....
Inner peace to you all....I do believe it is achievable...someway or another...the journey is the trip...lol...best of luck to ya...I think we are alllll gonna need it...so far this part of the journey sucks...like I said ...it is what it is....lol
I have been thinking of getting counseling...I have so much going on with my life and I feel like I am in control of nothing...I feel like I am busting apart at the seams....it is a crazy life and now lets add CES...I am so angry ....I want to beat something or someone to death...I just want this to stop...I am over it...I am done with it...I want my life back.....I want to go somewhere with my dogs...I want to be able to wash my living room walls down...I just want to be able to clean my house and do the laundry without being reminded of CES...FUCK CES - period.
I feel like I am going thru the 5 stages of death according to Elizabeth Kubler Ross (?) (sorry Craig....I know Psych 101...you understand tho...momentary loss of memory...lol)
I cried and was sad when it happened to me....then I accepted it and decided that it could be worse and now I am pissed and I don't feel like barganing...there is nothing to bargin with...I want the feeling back in my toes.....I want to have an orgasm...I want to beable to have regular bowel movements without feeling gross about myself....then I feel guilty cause I feel this way....so go figure...have I progressed thru these stages or am I just having a bad day that has turned into a bad week, month...oh yeah I am working on year number 2....that was a reality for me toooo....I honestly thought when I had the first surgery I would get up and run out of that hospital with no leg pain and no back pain...and here I sit...looking at the same view and crying because I want to be outside or I need to pee and can't make it to the bathroom in time...you pick a reason.....I cry when I am happy ....I cry when I am sad...I am not sure what stage I am in now...I am not even sure I really care....
I used to love my life...now I just wish I had one...I feel consumed by CES...I know it could be worse and I am thankful that it isn't...but I don't have to like it and I have a right to be angry and sad...it is my body and my life I am mourning for...I just want to be like I was....I just want this all to end.... I don't like feeling like this and am going to call and make a doctors appointment...he needs to adjust some medication or something....I can't keep feeling sorry for myself like this and I see no light at the end of this tunnel....it makes me sad....I just am not happy at this moment and there is nothing anyone can do about it but me. I know that...so ...I guess I call the dr tomorrow...
Sorry if I am morbid today....it is what it is...lol...Johnna you will get that joke...btw...I love you too girly....you are a bright spot for me....ty ty ty.
I love how I write this thinking someone will actually read it...it is more of a diary for me...a way of venting and not laying this all out on my family...they are all so caught up in their own lives they don't need this on top of it...I will be ok...lol...someday....
Inner peace to you all....I do believe it is achievable...someway or another...the journey is the trip...lol...best of luck to ya...I think we are alllll gonna need it...so far this part of the journey sucks...like I said ...it is what it is....lol
Saturday, March 12, 2011
Here we go again Part 2
Well here is it almost a month later and I have been on a whirlwind ride...or so it feels like. I had an appointment with my Nuerosurgeon and was told rather bluntlly that I indeed do have CES...not sure who it surprises the most when I here it.....me or the dr....they seem to say it so matter of factly...not sure what I want from them....at any rate I was given the "diagnoses" one more time...and again it sat in my throat like vomit I can't get up or down....it just leaves a nasty tase in my mouth...but this time Dr. Nair came right out and told me that it was in his experience that what I have not gotten back, as far as nerve repair, so far I probably would not get back...NOW... my friends....I have been kicked in the stomach....I feel like all my hope was dashed...lol...that sounds corny I know...and I can see people in worst shape than I am...but for the first time I am looking at my glass half empty...I cry at the drop of a hat....I feel on edge all the time...nervous ....depressed. I am so tired of doing this now ...what the hell does my future hold? Will this CES stuff get better? Why can't I have an agenda and know what to look forward to next? These are the unfair parts of CES...the not knowing....what a trip.
At any rate I went to see Dr. Nair and he informed me that I would need to see a pain management specialist and have steroid injections in my back...he referred me to Dr. Tiffany Williams from John Hopkins Hospital for pain management. He basically told me this was required by my insurance before they would ok another surgery. He did indeed tell me there was definately another herniation but we have to go by the rules... I was seen by Dr. Williams the next Monday...3 days after seeing Dr. Nair...it amazes me how fast they do things....well Dr. Williams and I had a consultation at 11am and she then prepared me for my first injection...I walked out of there at 2:00 pm...with steroids in my back and a feeling of having been in a whirlwind....I pretty much slept the next two days....my back bruised and I have to tell you when she hit the nerve I have never expierence such pain....my leg flew up involuntarily and the pain went from my back to my toes...it was horrible and last for was in reality maybe 2 seconds but it was foever long ....I cried...it hurt like hell and I don't care what anyone says....lol...and now.....well now I am not sure the shots are what they are cracked up to be....the frist three days it was ok...but I didn't do anything either....I took it easy...now ...this coming Monday will be 2 weeks...and I am not impressed....my back still bothers me...my toes are numb...my feet are numb...I have been having bowel and bladder issues ...I still have the pain when I stand to long...not as sharp or dibilitating ...but I still cannot stand longer than 20 mins tops till it starts hurting...maybe I was looking for a miricle...I still need the cane to walk...especially outside...and I have trouble getting up and down our of chairs....my back and legs spasm all the time...if I stand to long...if I start to turn over to fast...and forget about stretching in bed.....but...I guess I am still walking....that is a big thing...I know that...I just want more. Then I feel guilty for feeling sorry for myself....CES has just messed me up so much...I had a life and was happy and was content with myself and what I had accomplished...this last 3 years has been a long hard test for me....and at this point in time I am not sure I am passing....I am just really tired....mentally and phsically I am so tired of hurting....I just want to wake up and it all be gone.....I wonder how people get to that spot where they are satisfied with theirselves again after a disability interupts thier lives....
So now I am playing a wait and see game....wait and see what the drs have to say...wait and see what the insurance is going to do or say....wait and see if I can go another day without peeing my pants....wait and see.....wait and see....it is crazy .....Lessons to learn I suppose.....I am not sure what Gods plan is here....we will see.....
In the mean time I am maintaining my drug regiment and hoping the nerve meds will help expeidate the healing...or is their going to be any more healing and when do you decide that...I mean why take the meds if their is nothing left to heal...so many quesitons....thank you CES....
Peace and love and painfree days to you all,
Me~!
At any rate I went to see Dr. Nair and he informed me that I would need to see a pain management specialist and have steroid injections in my back...he referred me to Dr. Tiffany Williams from John Hopkins Hospital for pain management. He basically told me this was required by my insurance before they would ok another surgery. He did indeed tell me there was definately another herniation but we have to go by the rules... I was seen by Dr. Williams the next Monday...3 days after seeing Dr. Nair...it amazes me how fast they do things....well Dr. Williams and I had a consultation at 11am and she then prepared me for my first injection...I walked out of there at 2:00 pm...with steroids in my back and a feeling of having been in a whirlwind....I pretty much slept the next two days....my back bruised and I have to tell you when she hit the nerve I have never expierence such pain....my leg flew up involuntarily and the pain went from my back to my toes...it was horrible and last for was in reality maybe 2 seconds but it was foever long ....I cried...it hurt like hell and I don't care what anyone says....lol...and now.....well now I am not sure the shots are what they are cracked up to be....the frist three days it was ok...but I didn't do anything either....I took it easy...now ...this coming Monday will be 2 weeks...and I am not impressed....my back still bothers me...my toes are numb...my feet are numb...I have been having bowel and bladder issues ...I still have the pain when I stand to long...not as sharp or dibilitating ...but I still cannot stand longer than 20 mins tops till it starts hurting...maybe I was looking for a miricle...I still need the cane to walk...especially outside...and I have trouble getting up and down our of chairs....my back and legs spasm all the time...if I stand to long...if I start to turn over to fast...and forget about stretching in bed.....but...I guess I am still walking....that is a big thing...I know that...I just want more. Then I feel guilty for feeling sorry for myself....CES has just messed me up so much...I had a life and was happy and was content with myself and what I had accomplished...this last 3 years has been a long hard test for me....and at this point in time I am not sure I am passing....I am just really tired....mentally and phsically I am so tired of hurting....I just want to wake up and it all be gone.....I wonder how people get to that spot where they are satisfied with theirselves again after a disability interupts thier lives....
So now I am playing a wait and see game....wait and see what the drs have to say...wait and see what the insurance is going to do or say....wait and see if I can go another day without peeing my pants....wait and see.....wait and see....it is crazy .....Lessons to learn I suppose.....I am not sure what Gods plan is here....we will see.....
In the mean time I am maintaining my drug regiment and hoping the nerve meds will help expeidate the healing...or is their going to be any more healing and when do you decide that...I mean why take the meds if their is nothing left to heal...so many quesitons....thank you CES....
Peace and love and painfree days to you all,
Me~!
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....
--------------------------------------------------------------------------------
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
Saturday, January 15, 2011
My how time flys....when you are taking drugs....
Ok...I made it thru the holidays...thank God....besides money being difficult for everyone I had a mishap with my medication....my pain pills came up missing...ofcourse besides being pissed that someone would come into my home and do that I was so sick from drug withdrawls that it did indeed mess with my holiday cheer....couple that with the fact that I was hurting ....had kids...and family dynamics 101 we also had a death in the family....so when I say I made it thru the holidays that is what I mean...I am so glad they are over...I honestly don't care if I go thru them again or not....lol...it may be gift cards for everyone from now on....fighting the crowds and hurting was just not worth it.
Drug withdrawls....this scares me to death...I am not sure I have ever been that sick in my life...for 2 days I laid in bed shaking, cold, sweating, vomiting and diarreah, everybone in my body hurt..this went on for about a week with the second and third day being the worse I think....I know when I got hit with CES I was told not to be afraid to ask for something for pain....well I have never been a big pain pill person...they usually make me sleep and I don't like sleeping my life away....well I need them now...some days less than other but I still need them...what amazes me is the fact that I need them whether I have pain or not...I am now physically addicted to narcotics and I am told that I am not even on heavy duty stuff....I am on hydrocodone 10/650...4 times a day...I have cut them back to 3 times a day now...and hopefully next month we will go down to 2 times a day...I am determined to not have to take these all the time...I hate the fact that my body needs them...it is one of the things that I find unfair from this syndrome I have been blessed with....I never set out to have a addiction to pain pills...in fact I cried to my dr about it...he assured me he would help me off of them...I am not sure when we will be able to cut them out entirely...I still have pain and spasms ....I can hardly stand long enough to cook a meal...or do the dishes....so when does this stop...when will the pain go away????? When will I be normal again????
I have to admit not much has changed...I am still having back pain and leg pain...and numbness...muscle spasms...bladder problems...my bowels seem to be operating at a normal function..I am so grateful for that.....I am just tired....tired of feeling bad...tired of battleing this...I see no light at the end of the tunnel...I was told today that I just needed to take a valium...it would make the grey days sunshinny again....joy ....more drugs to worry about becoming addicted to...I am waiting for them to made marijuana legal in our state for medical reasons....I am waiting...I can tell you now it helps with my back pain and muscle spasms and even the depression...now you ask me how I can worry about being addicted to narcotics...my body does not go out of kilter if I don't smoke....I believe that it is safer for my liver than chemicals are...and it helps with the pain...I can't understand how people become addicted to these pills....I guess if you do not have pain and take the pills you would get your high...they just mask my pain and that is what they do....mask it...it does not go away....atleast for me it hasn't.
Again I have to say...I am tired of this...I am not seeing light at the end of the tunnel anymore...I have an exsistance that goes from my couch to my bed...I feel like this has affected my whole family...nothing is the same anymore...I am tired of just exsisting...I want to go out and enjoy my life...I have things I want to do...and in the mean time...CES is calling the shots....it feels like I have no control...
I have been reading the comments in a support group I belong to and accordingly these feeling are quite normal....yeah....finally something normal and it goes by the name of depression. Depression over everything...nothing is the same anymore...even sex is different...frustrating...I shake my head in amazement when I think how much my life has changed....the things I am dealing with....I wonder why...I have always believed that God does not give you more than you can handle...and I still believe that...I just wonder why? What lesson am I to learn from this? What journey am I on...where is this leading me? and ofcourse when I really am a pitiful example of a person I wonder why me...what did I do to deserve this....what am I suppose to be learning?????
Ok this is enough for this I am tired and want to lay down....I toss and turn all night...unless I take medication my doctor gave me...I have pills for everything it seems now...how depressing is that?
Night all...heres wishing you all painfree days and nights!
Drug withdrawls....this scares me to death...I am not sure I have ever been that sick in my life...for 2 days I laid in bed shaking, cold, sweating, vomiting and diarreah, everybone in my body hurt..this went on for about a week with the second and third day being the worse I think....I know when I got hit with CES I was told not to be afraid to ask for something for pain....well I have never been a big pain pill person...they usually make me sleep and I don't like sleeping my life away....well I need them now...some days less than other but I still need them...what amazes me is the fact that I need them whether I have pain or not...I am now physically addicted to narcotics and I am told that I am not even on heavy duty stuff....I am on hydrocodone 10/650...4 times a day...I have cut them back to 3 times a day now...and hopefully next month we will go down to 2 times a day...I am determined to not have to take these all the time...I hate the fact that my body needs them...it is one of the things that I find unfair from this syndrome I have been blessed with....I never set out to have a addiction to pain pills...in fact I cried to my dr about it...he assured me he would help me off of them...I am not sure when we will be able to cut them out entirely...I still have pain and spasms ....I can hardly stand long enough to cook a meal...or do the dishes....so when does this stop...when will the pain go away????? When will I be normal again????
I have to admit not much has changed...I am still having back pain and leg pain...and numbness...muscle spasms...bladder problems...my bowels seem to be operating at a normal function..I am so grateful for that.....I am just tired....tired of feeling bad...tired of battleing this...I see no light at the end of the tunnel...I was told today that I just needed to take a valium...it would make the grey days sunshinny again....joy ....more drugs to worry about becoming addicted to...I am waiting for them to made marijuana legal in our state for medical reasons....I am waiting...I can tell you now it helps with my back pain and muscle spasms and even the depression...now you ask me how I can worry about being addicted to narcotics...my body does not go out of kilter if I don't smoke....I believe that it is safer for my liver than chemicals are...and it helps with the pain...I can't understand how people become addicted to these pills....I guess if you do not have pain and take the pills you would get your high...they just mask my pain and that is what they do....mask it...it does not go away....atleast for me it hasn't.
Again I have to say...I am tired of this...I am not seeing light at the end of the tunnel anymore...I have an exsistance that goes from my couch to my bed...I feel like this has affected my whole family...nothing is the same anymore...I am tired of just exsisting...I want to go out and enjoy my life...I have things I want to do...and in the mean time...CES is calling the shots....it feels like I have no control...
I have been reading the comments in a support group I belong to and accordingly these feeling are quite normal....yeah....finally something normal and it goes by the name of depression. Depression over everything...nothing is the same anymore...even sex is different...frustrating...I shake my head in amazement when I think how much my life has changed....the things I am dealing with....I wonder why...I have always believed that God does not give you more than you can handle...and I still believe that...I just wonder why? What lesson am I to learn from this? What journey am I on...where is this leading me? and ofcourse when I really am a pitiful example of a person I wonder why me...what did I do to deserve this....what am I suppose to be learning?????
Ok this is enough for this I am tired and want to lay down....I toss and turn all night...unless I take medication my doctor gave me...I have pills for everything it seems now...how depressing is that?
Night all...heres wishing you all painfree days and nights!
Subscribe to:
Posts (Atom)
