I am still here....

I am still here...maintaining...so much going on in the lives of people around me that I have not had time to dwell on myself....My left leg has really been bothering me..I went to the Doctor the other day and he told me the results of my MRI were that there is some herniation on the left side at L4 - L5 and S1....there is also some scar tissue built up. His suggestion was to continue with the physical therapy and if not better in a couple of months then I should see Dr. Nair again...he said I may need more surgery....well that is fine..in the mean time I am doing my physical therapy and walking on the treadmill here at home. Doing the best I can to rebuild what I had - if that makes sense to you....

I am tired of this...I am tired of not having pain free days.....I am tired of not being able to just get up and run and jump in my car and go...I am tired of not being able to play with Walker because he is too strong for me...I am tired of not being able to work all day and clean my house. I am tired of my life being on hold...but I don't know how to fix it...I see no light at the end of the tunnel...I am tired of walking with a cane....I am tired of not being able to have orgasams...I am tired of not being able to set in my bathtup and shave my legs because I can't get in and out of it....I am just tired of this whole process....

My Left leg is really bothering me now...the pain is not as intense as it was in the beginning of this but it is there. I am tired of having pain every day...I just wish this was over...but then I wonder if it ever will end...In all honesty I don't think so at this point. In the mean time...I am still here...and I am maintaining...somedays that is all I can do.....

Hope you have painfree day and nights!

MRI's and other wonderful things or just 2 more months

Every thing involved with CES takes 2 months...lol...I have decided that. I had a MRI not long ago and got my results Tuesday when I went to the Doctor. He told me I still have herniation at L4, L5 and S1 on the left side with scar tissue also showing on the scan...he did not tell me where that was but I am assuming it is from the first surgery....who knows. He also told me the nerve conduction test showed that my nerves are regenerating which is a very good thing. The problem here in is that it all takes time...lol...time time time...seems I have lots of it...I am just very very tired of waiting for it to happen.

Lots going on!

Wow....My life is nuts at times at best....so much stress with my sons divorce and his children...winter has set in and that makes me scared to death to go outside...I don't want to fall and my proprioreception is not the greatest...hows that word for ya...it really just means that my body does not really trust my feet to just walk without looking down and picking my steps...when people walk they usually just walk...they don't watch every step...I do....and don't even realize I am doing...that is part of my therapy...lol...I can't wait to use that word in scrabble some day!

I am doing Physical Therapy 3 days a week....I really do look forward to it...I have decided that this winter I am not gaining any weight...I want to lose weight if anything...like 30 lbs...so the work outs are good and do leave me sweating...I ride a bike and do the tread mill...then I have leg exercises I do standing up....then resistance exercises laying down...then we have the pelvic wall therapy...butt squeezes, and some kegel like exercises...pulling your belly button into your spine and holding it....all kinds of things I had never even realized about....and I have been walking the treadmill at home for 10 mins at a time 2 times a day....so we will see....believe it or not my energy level does seem to be up a little...I would so love to get addicted to working out....if my body would co- operate...

I had a rough time last week with depression....my husband likes to drink a bit and quite frankly I was just at my end with life, CES, and whatever else and truth is I let it out...then crawled into my shell....thankfully I have friends that make me realize I am not alone in this and I still am trying to see light at the end of the tunnel....it is so hard sometimes....I just wish I could get up and run away from all this....truth is ....I probably couldn't find my cane...lol....

Speaking of the which I bought myself a new cane...it is really cool...adjustable...with blue and purple butterflies on it....my other one is paisley...I figure if a girl has to use a cane it may as well match her outfit....lol...gotta get our bright spots where we can.

So this week my bladder is not being very co-operative...I have had more accidents than it seems usual....not sure what is going on with that....a couple of times it also hurt when I urinated...hope I am not getting a bladder infection...been drinking the crap out of cranberry juice....

Well the real reason for the depression this week is that I was dismissed by Parkway Neurosurgeon and Spine Institute....they were upset with me because I failed a drug test...well truth is I forgot to tell them I took a prescribed sleeping medicine from my general practitioner...he gave the pills to me on October 15th....he gave me 30 and I have 15 left...this is December...I guess I took one before I went down there and at any rate it (amitriptaline)showed up in my system and I did not tell the Dr I was taking it and since they are also pain management they will not tolerate discretion's so I was formally dismissed from them....well I cried for two day...would have been different if the med had not been prescribed...well to make a long story short they also rescinded the order for Physical Therapy...they really have been very nasty to me...I did not intentionally lie to them and the drug was prescribed to me...but I guess office policy is office policy. Fortunately I called my GP and he was like - do not even worry about them I will take care of you and see you thru to the end of this...he did tell me that he got the report from the MRI and my nerves are regenerating...I am sooooo happy...so I cried then too!!!!

I also bought myself a new pillow for under my knees...it is long but has like a triangle top ...I cannot lay with my legs flat very well....it makes my back hurt and my knees up relieve the pressure on my back so my new pillow is wonderful....it was only $14.00 at the pharmacy...I was happy.

Ok Christmas is coming and I am not looking forward to the shopping part of it...too many people and too hard. I think I am going to make alot of my gifts....candles, corn bags and not sure what else....lol...my list is really not that large....and it is really all about the kids as far as the gift giving....I hope I get to go to my mothers and do so Christmas stuff with her and the church.

Ok time for me to get off of here...my leg is tired and it is time for me to hit the sack....not really sure why...I seem to be up half the night most nights....ah the life of CES~

wishing you all pain free days~
Lynn

Good morning!

All seems to be going well...I did start physical therapy and my therapist is the greatest...she is pleasant, fun, encouraging and real....I really like her alot...so I now have a regiment of exercises to do every day. It is a good thing...if nothing else it gets me out of the house and I actually see people. That is a good thing.

Dr. De Marco order the Pelvic Wall Therapy (or whatever it is called) and it seems to consist mainly squeezing exercises...can't do anything by make my butt smaller right????? Lots of leg exercises, which is awesome....my legs are so weak...I cannot squat down and get up...going up steps used to be a problem...I did not realize just how weak they were until steps came into the picture...but even that is getting better....They also put me on the tread mill which is exciting to me....I love to walk...I wish it was outside but I am going to do it every day...I have made up my mind...so maybe by this spring I can walk my dogs....then Sativa and I can get back to the nursing homes and Walker can maybe ....notice I say maybe....get some more training in....I would so love to see him do something....right now I feel like he is getting cheated but he loves me so and I love him....he is Little Boy Dog...ok enough of dogs. But you know that is what keeps me going...soon I will be able to walk my dogs...I just know it....lol... So back to the tread mill....she started me out very slowly...I as her about the ab lounger and she said no....it would be to much on my back she thinks. Lots of resistance exercises too with big bands of different strengths....it is an hour a day to do all the things...so that is good ...3 times a week I get to go in there and then the days here I work out so it should help me lose some of the weight I have gained from being so sedentary the last three years....

I had the MRI and am waiting on the results of it. I am really hoping that I do not have to have anymore surgery but if I do I will and it will be fine....crazy but fine I guess...you know it is one of those dis- stress things that my GP told me about....it is a stress that I can do nothing about....that was a good lesson for me to learn. There are some things that you just can do nothing about....I cannot cure or handle or take care of or make it all right all the time....sometimes people...like my son and my husband ...just have to learn to fend for themselves....at this point in time I can only take care of me. And it is not that I don't love the them...of course I love my family - but I cannot change my situation so they need to dummy up....lol...I seem to be using that phrase alot lately.

So my step granddaughter and her little one have been staying with us....it seems to be good for me, especially having Lily...she is so cute and so smart...and she is so good. It is fun to have a little one in the house again...we play and watch movies together...she comes and tells me that I need to hold her....talk about a mood lifter...yep Lily is a Godsend at this moment. Jr and I have found ourselves in a predicament with Jessica...her mother threw her out and she has no place to go....she is my sons ex wife's daughter...her mother is upset that she is here but yet she has thrown her out...her mother feels like she is being betrayed by Jessie....This is just Stress...it can be elevated.....I could tell Jessie no she cannot stay here. But then I feel like what kind of person would I be...she has been a part of our life since she was 4 years old. She is my granddaughter...her blood grandmother told her she could come stay with her for 2 days but then she would have to find a place...excuse me she has Lily to worry about...what now? So yes I could elevate that stress but I will never turn her away. Besides I am enjoying her...I love kids and Lily is a bright spot for me.

I am not sure really if stress aggravates the CES but I am sure it is not good for the depression part. I currently take Cymbalta 60 mg and Amitriptaline 25 mg at night for my nerves and depression. It seems to help and this is a good thing.

Seems like my bladder is still about the same. I have been trying to do the kegel exercises when I think about it and I also have been trying to stop my urine stream mid stream...thinking it will strengthen the muscles so I can control the fact that my brain tells me I have to pee and it is running down my leg at the same time....and truth is I cannot run so sometimes I barely make it...so far I have been lucky. I have thought that I should just put an extra set of clothes in my truck when I go out...for a long time I wore depends pads when I went our and I carried a pair of panties in my purse...never had to use them but was glad I had them. Who would think I would have to worry about these things. I just had a bad bout with constipation. I still have no urges to go to the bathroom. I had not had a bowel movement if five days...I really had a rough time and for the first time while I was trying to make myself go I actually thought about the hospital. I did not think about me going to the hospital....I was determined...lol...but I can only imagine the feeling of having to go to the hospital and having to go thru that. After I went to the bathroom I really hurt...my stomach and my rectum - like up inside really hurt for a couple of days....I had to take it easy. The next two day I had 5 bowel movements - one for each day I guess...now I am going kind of reg but still no urges...I just set and squeeze my butt cheeks and hope the muscle tone comes back.
Evidently the pelvic floor really affects alot of things....

OK well that is about it for the day...life goes on and it is time I got to mine...

Peace and painfree days to you all!

Support Groups...

Ok....well I am a firm believer in communication.....I believe it helps to get your thoughts out and I believe we are intitled to our feelings and our thoughts.....and God bless those that do communicate in the CES forums but I cannot take it...I just cannot deal with hearing how sick those people are....some of them have been dealing with this for 20 plus years....some are dealing with stuff that I have only read about....but I cannot take it.....I cannot read about it....reading about it dims the light at the end of my tunnel if that makes sense to you.

I recently join a chat group for people who suffer of CES....this chat is a email based chat...I only use my Yahoo account for it....well today I checked my email and there were 234 messagaes...chat input on different conditions due to CES......well....I was overwhelmed....it was just to much for me to take in. The worst of it was that it seemed to me they were lifers....if you know anything about the military you know what a lifer is....well they were lifers.....there forever...always fighting the same battle...I can't be a lifer to CES....it is just to much for me.

I understand that my life has changed. I understand that I have to do things differently...but I refuse to give into it...I just can't. If I do it will be all over for me....I have a dream of walking without pain and without a cane.....I want to walk my dogs.....I want to go for a walk in the woods....I want to ride a bicycle just one more time.....I just cannot do that chat thing....everyone talking about not being able to do this or do that...well what the hell...what about what they can do.....there are people out there is no much more worse shape than I am in....I just cannot be faced with nothing but negativity and that is what the chat seemed to be.....I deleted them...I looked at two or three subjects and I just could not do it....it physically made me shudder....and for a rare syndrome there seems to be alot of people involved there....My new doctor said CES covers a wide spectrum of symptoms and it is hard to diagnose....well not hard but that is why doctors are slow to use that as a diagnosis....so many symptoms ....well maybe that is true but you know what...that is what it is all about for anyone...everyone I know has an ailment or a boo boo they need to take care of ....it does not end thier lives....nor do they give up.

In my opinion one of the worse symptoms that goes along with the CES is depression....well let me tell you...I do so believe that. This last time I went to the doctors I walked away with a good outlook but I so wanted a quick fix....I wanted this magic doctor at this magic spine institute to give me a magic pill and fix me....that's all.....and when I realized that was not going to happen I crashed...I cried for about 3 days...then I was just pissy....self centered and pissy...but you know what...thats ok. It is ok for me to have bad days and to be a bit pissy...it is not ok for me to dwell on it...it is not ok for me to give up. That chat line was so overwhelmings to me...I felt like these people were just to accepting...talking about disability and pain and it was just too much for me....I wish them all the best...I was sorry for most of them and counting my blessings....I am sooooo very very lucky....I think I refuse to mentally go to that horrible giving in stage....I just cannot give in to this...there has to be light at the end of the tunnel......right now I just want the pain to go away and I want to walk my dogs.....thats all.

Now lets talk sex.....I am so sexually frustrated...lol....I thought things were working right and now I realize they are not quite as willing physically as they are mentally. I thought it was going to be ok but now I am not sure....this new doctor has order what is called Pelvic Floor Therapy...it is exercises you do to help strengthen the pelvic wall...this is suppose to help with bladder control and with sexual feeling. This is, according to what I have read, and I do read alot....but this is normal for CES sufferers. I only know how to say this in the English language but it is not uncommonly reported by CES sufferers that stimulation to the clitoris will still produce orgasmic feelings and the urges to orgasm are strong but no actual orgasm is reached. So therefore mental orgasms are as important as physical orgasms....well I have to tell you I just want to know the plumbing still works....so in the mean time my poor husband is trying to be very understanding....we will see....omg....when I was able to have sex I was turning the poor man away ....now I am telling him we have to practice to make sure it works....I never thought sex was that important. I thought it was something that could be lived without. Now I realize just what a vital part of a relationship it is....a closeness that is only shared with a select person or persons at the time. It kind of seals the deal for me....express a level of love that can only be expressed that way....if CES robs a person of that well ......like I said...one day at a time and we will see.

Ok....I just needed to vent about that chat line...it was just to negative for me.....I am not going to leave it...but I am not going to dwell in the light either.....life is to short even if you have to wobble down the road you have to keep wobbling! lol

Heres wishing you peaceful and painfree days,

me!

Here we go again....

Wow...seems like forever since I have written anything here...I guess I just have to say I am maintaining....My health seems like it has been the same since forever....nothing seems to change....my legs are still doing the numb thing...it does seem to come and go.....what really is bothering me is that my left leg seems to be really acting up more than my right leg...it is so screwy...it comes and goes.....my toes go numb....then what is really wierd is that my left foot....all the way around my foot...like a tight band....lol...then it goes away...and then maybe I will feel like I am walking on glass...omg..I stepped on a popcorn kernel and wanting to cry....wow....it got me that is for sure...thank goodness it was like a shock kind of thing and not something that stays...ok...it is 11:31 pm and I just went to the kitchen from my bedroom and back....25 feet maybe...and I was not sure my left hip and leg wanted to come with me.....my right foot is also swollen tonight...funny how that happens...one foot will swell...I think it may have something to do with the way I set....I have to set up straight and kind of like an Indian...and I think my right leg dangles off the bed...and that might be part of the problem but it is my most comfy position....guess I will try to have to figure it out...lol...crazy crazy.



Ok...I have went to another Doctor....add one more to my list....I am happy to say that I am impressed with this place. It is called Parkway Neurosurgeon and Spine Institute......a state of art place I assure you.....I had a very nice Doctor who did listen to me. He did explain to me that the reason that most Doctors have a hard time diagnosing or saying the words Cauda Equina Syndrome is because it covers such a wide spectrum of symptoms. I found that interesting and I will have to think about that....lol My new Doctor did a Nerve Conduction Test...I am thinking it is the same as am EMG...they put needles in you and send electric current thru the nerves or muscles and measures how long it takes the nerve to tell you that you have pain....atleast I think that is it....I did read about it and that is how I understood it. I flunked...lol I do indeed have CES....I keep wanting to find a doctor that has that magic pill and a date that this will be done....lol...not happening....so ofcourse I am fighting depression....no fast fix...busted my bubble one more time....here is where I am suppose to give myself the infamous "It can always be worse" speech...yeah I know that...I am thankful for what I do have but don't blame me for wanting it all...."IT ALL" meaning ...walking without a cane...going to the bathroom without feeling like I am not going to make it....regular bowels...un-numb feet...leg pain...see what a funk I am in....it sucks....it really does. I just want to walk my dogs....thats all...the Dr asked me what I wanted for my end result...and I cried...I just want to walk my dogs....thats all....well that and an orgasm....lol.....That is another story another day...I am learning sexual dysfunction is also really prevelent with CES....all I can say is ...I feel old...but I am ceretainly NOT dead....I am learning that there is more to sex than physical touching and that a mental orgasm is as good...if not better...than physical sex. I feel rather shy talking about my sex life here but it is a fact that sexual dysfunction is a fact of life with this wonderful adventure I have taken....my parts do not work like they used to...there I said it...I have had.... I feel so inadiquate in so many ways....CES is ceretainly not good for ones mental state I can tell you that....

There have been some medicine changes also....the Dr. upped my Gaberpenting to 2400 mg a day, he changed my pain meds also...he increased them since I am going to physical therapy...he also gave me a new order for a MRI w and w/o dye, he also gave me a new order Physical Therapy and also wants me to have Pelvic Floor Therapy....don't ask ...it is a whole new blog....I go back to him December 6th....then hopefully we will have a game plan....we will see.....He did ask me if I was willing to do agressive therapy if I needed it....I asked him what that meant and he said surgery.....my answer was yes...anything to make this go away....I hate the thought of having surgery again but if I need to I need to.....I just want to walk my dogs....Like I said I am tired of this whole process....I just want it to be done.

3 weeks ?????

I cannot believe it has been three weeks since I last wrote in this blog. I had full intentions of writing in this blog everyday ....I even stated that...I felt it was necessary to record every little body difference since NO where could I find a time table...lol...I wanted to know every little daily change....Little did I know that the day of a nerve was a zillion times longer than a day to the normal human...if that makes sense to you. Nerves heal so slow....crap...I am not even sure they have an inner clock...it is crazy....I know that I am one week shy of being 9 months post op....I could have built a baby in this time frame...and half the time I cannot feel myself from the waist down....I think my feet are walking on another planet somewhere....they simply feel numb and stingy.....the list goes on but....I do have a couple of concerns still or really again...(I am going to hit the forums and see what is what with it). I need to no if you regress at times too.

#1......I am having problems urinating again....I get the urge...and it is not really strong...more a ...I THINK I have to pee and go set on the toilet and set on the toilet and set until finallly I will start to pee...I have a slow stream...and at times do not feel that I am finished...

#2....Bowel movements seem to have taken a step backwards also....I have really been having trouble with constipation...once while I was trying I actually thought about how people feel that have impacted bowels because of this wonderful syndrome and how embarassaing it must be for them to have to go to the hospital because of a blockage. Well I can tell you...I honestly had a very bad time this past week....I am thinking about asking my dr to refer me to a nutrionalist....so that I can learn how to eat to get enough fiber and nutrients also.....I don't know ....just a thought. I just know that for about 2 days afterwards I was still sore and tender across my stomach....I am not getting urges to use the bathroom again....or if I do it is after I have been really constipated and then it is like explosive diareahha for a couple of days.... This seems to be a step backward to me. But then lots about this crazy stuff does not make sense nor does it feel like I am making progress....

#3...Sexuality....hmmmmmmmm how do I put this without sounding like a fanatic...lol...About a month or so ago...Not really sure of the exact date....ahem....I experience my first orgasm in quite awhile....well honestly I had forgotten how important sex was to my well being....My husband and I have always had what I would like to think was a healthy sexual relationship...we enjoyed sex...we made dates for sex and enjoyed pleasing each other...well this has all changed...now...I am not sure if our relationship is healthy for the shape I am in now or not...for the first time is 40 years of marriage I find myself confused about sex....lol. As I said a while back I experienced an oragasm and it was wonderful.....welll now...forget about it.....first of all a few times penetration has actually hurt me until I can relax and deep breath thru the pain....then it is ok...but no orgasm....then there is the get to the brink of orgasm and nada.....I am not sure if this is mental or physical...I think the two walk hand in hand....I love the foreplay and I do have feeling to the touch...it is the orgasm part that is lacking. I hate being so graphic but for this blog to have any bearing on CES at all I have to be truthful and the truth is I think my sexual feeling (physical) has regressed. I actually have had pain/tenderness in my lower left side....I actually think that is because of the bowel problem and the fact that I have tried a new thing I learned about to help you pee and you push on your abdomen...but if you push wrong it can hurt you and push your bladder out of where it it suppose to be...lol...omg ....take this pill to counter act what this pill is doing.....crazy crazy....lol

#4.....Depression....here we go again....lets be depressed......well not really...but stressed yes....I don't know if I am depressed or not. I know I am stressed beyond belief at times ....and then there are times when I do not want to get out of bed...pull the covers over my head and cry my heart out....so do I think I am depressed....hmmmmmmmmm probably....I guess I could ask my dear friend Craig the therapist...but it doesn't really matter now does it? I am going thru growth spurts mentally and in my personal being.......I am not sure I am depressed...my life if full of family dynamics 101 if you understand what I mean...everyone always has a problem and it does seem to land at my door step occassionally.

My doctor told me there was two types of stress that we have to deal with....

#1 Stress...regular stress - we all have it - life is stressful - but regular stress can be illeviated from our lives...too many dogs to deal with you can get rid of dogs therefore getting rid of the stress.

Then there is :

#2 Distress ....this is the stress that is brought on to you that you have no control of...that you have not created nor can you stop it. Such as a child's divorce...you can be stressed by this because you care about your child...sometimes you have to stand up and involve yourself in a situation you have no control of... CES create dis-stress in your life....it is here ...if affects our lives....and there is nothing we can do about it....so yes I have stress...gonna get rid of a dog, cat, kid, husband, mortgage company,..lol...that list could go on and on....I think I can meditate tho and get myself relaxed enough to get that stress level down. Now that Dis - stress is a different thing.. CES is here...there is nothing I can do to change it...It does frustrate me because my body has changed in so many ways...I don't look the same....I certainly do not act the same...I cannot do the things I used to do...I can't even get up and decide to just go for a walk....am I Dis- stressed...absolutely...can I change it ...nope...not at this moment it does not seem so....I can do the best I can that's all....I guess learning to live with the Dis-stress is something I need to work on.....if you cannot get away from it it is hard to feel happy and concentrate on yourself...I feel like I am rather lost to CES....

I kind of took charge of my own body at this point.....I have decided that I want to go to a different neurologist than my doctor has referred me to. I have decided to go elsewhere...I am going to go - am waiting for my appointment now....to a place called Parkway Neuroscience and Spine clinic....the offer pain management but also they practice different type of medicine...they practice acupuncture to reflexology to spinal surgery...I think there are 7 different Doctors at the Clinic...A friend of mine went there and seems to be very pleased.....I just want to pee and walk normally and have sex normally too....in time I guess...all in due time.

I will try not to be gone so much in the future...I honestly had not realized it had been 3 weeks...no major changes...if fact I feel like I am slipping backwards physically.....we will see.

I wish you all pain free days and peaceful nights.....

Peace....Lynn

Another day...

Truth is I slept all day today...just could not drag myself out of bed or off the couch....I am not sure if this is depression...I seem to have to fight that all the time...or the CES....sometimes I feel like I have all kinds of energy...then some days....well....like I said I slept all day. I feel rested now...but I still feel like just laying in bed...it sucks.

My legs have really been bothering me lately....they hurt when I stand very long...I am hoping the cold weather will not have an affect on the them but I am fearing that is what is going on....I want this to be over.

I do have trouble with my right foot....it seems like it wants to turn in....I did see a reference to that in one of the forums but I cannot remember where it was....I am wondering what that is all about and if that is something that goes with the CES.

When you are diagnosed with having a syndrome it changed your whole life. Atleast this one has. I think it changes everything ...your relationships with people - your outlook on life - everything - it is all changed....I mean my son and grandson bring my cane to me....I just realized they do that...and poor Charlie...is always worrying if I am ok...he is a good boy with a wonderful heart...a gentle soul....I am blessed with my grandchildren....I wish this would all be over so they could have the grandmother they deserve....nf

I have a drs appointment on Oct. 19th....we are going to discuss the pain management clinic...we will see...I am not really impressed with the thought of going there...but I guess I do what I have to do.

Ok...just wanted to get some stuff down...everything really seems the same now....this is crazy crap....I wonder if there is light at the end of the tunnel....

Peace and painfree days to all~

So today is another day...

Goodness I seem to be saying that a lot lately.....I guess that is how I intend to pass the next 10 months ...one day at a time and one step at a time! Like I have a choice Ha Ha....I am kind of having a bad day today...just achy and my back feels really tight....I had the Dr. up my pain pills again...I now am taking 3 hydrocodones a day...2 was just not getting it....by this time every evening I was really hurting without that middle pill....now I am not so bad ...guess keeping the pain at a bearable level is the most important thing... most days it is something I can deal with...the getting up and bending over is the rough stuff.

I also have noticed my gait ...after I get started in the morning or after laying down....(I told a friend that I felt like a robot when I first stand up or get out of bed...have to get my gears going)...anyway after I get started in the mornings my gait is relatively good...I can make a concerted effort to walk without it seeming to show to much....but then as the day goes on and I tire out and my back starts aching...then I get what I refer to as a slap foot...(oh that sounds terrible....I hate how this whole process sounds......lol...slap foot...drop foot...incontinence...constipations...dysfunction...the list goes on and does not get any prettier.....lol...no where have I found the words that make me smile...like roses, or kisses....you get the idea....sorry bout that rant...)anyway...I have less and less control of my legs it seems and I put my foot out there and slap it down....or drag it...or trip over it because my toes did not lift as high as I thought they did....any way I think the key is the tired level and to get plenty of rest....

I know I need to learn to let people do things for me....omg that is the most horrible part of this whole mess....I want it done ...now....and my way...I recognize this...I own it...I have no problem with that at all....NOW...if you don't want to do that or can't do it...don't get mad at me if I try.....and sorry if I bite your head off....I sure don't mean to...it is just the meanness of this syndrome coming out in me......well atleast that is what I am saying! lol

I do love my tens unit.....it really has come in handy for the last couple of days....not sure why but I really feel like my back is trying to spasm...I am gonna have to read and see if that is a common thing amongst us sufferers ....is that a word????

I remember how hurtful the pain in my legs felt from the damaged nerves...the waves of pain...like muscle spasms and then when they hurt because the sheet was touching them....I am so glad that I am not experiencing pain like that any more....the spasm like things and sharp pains that shoot down from my butt cheeks....and then the tingling in my legs from the knees down and my feet ....even all that is not as bad as it was in the beginning....that was unbelievable pain...I would not wish that on anyone....

With that said I am ready to relax and try to enjoy my evening....going to do some wings later.....

Peace and pain free days to ya!

Another Day....

It is autumn time in these mountains....I am aching to hit the woods...this is my favorite time of year....it smells so good in the woods....Just the fact that I am thinking of getting in the woods is a good thing I think....course this time last year I was planning on walking my dogs in the spring...lol...life sure threw that one a curve. In the last three years I have had to learn to walk twice...just not sure what that karma is all about....

I did go back and read from my first blog entry and I can definitely see improvement....I am SO lucky compared to some people I have read about or met on line....I don't have to self Cath....bowel functioning is pretty normal...the pain pill give me some constipation but that is par for the course....if I could just stand and walk normally....I would be good to go. I miss not being normal in that way....some day.....

The numbness comes and goes....it seem worse at night...I guess being on my feet during the day does this....seems like it changes places too....first my feet then up to my knees...the other day I felt like the bottoms of my feet were numb. The Dr tells me that my loss of feeling according to his little pin prickly thing is L4 - L- 5....yeah right I know exactly where that is....lol.....but I am learning....learning a lot!

Last night my back was really tired so I hooked up my tens unit and it did help....that is a good thing.....

Morning....

So this morning I wake up with one kid threatening to kill the other one because he broke his stick....KIDS....and numb toes and legs.....it is crazy....I did notice last night my right leg really hurt when I tried to turn over...sometimes it feels like the muscle is not connected or something and it hurts...I have only noticed this at night or when I am laying down as it only feels that way when I try to turn over. It is strange. My muscles ache in my back today....I am not sure why...maybe did too much yesturday or am not doing enough...I know pain is gain so I am not going to fret about it and I am going to assume it is because I used them and they are not used to it.

Not sure what I am going to get into today...am doing dishes as we speak and washing a load of
clothes....it never ends does it....It is a beautiful day out there and I have been invited to a birthday party....might just do that!

I am so tired of this.....have I said that before???

OK...I am so tired of this....I did nothing special today...got in my car and drove to the hair dressers....maybe 10 miles one way....stopped got gas....picked up stuff for Jr's lunch...came home...folded clothes...just usual stuff.....all with my trusty cane....and tonight here I sit...my big toes and the one next to it (on both feet) are numb...it runs up the inside of my legs and shins to my knees....and then behind my legs to my butt cheek....and when I stretch I immediately go in a body cramp. I kid you not...it is like a body charlie horse. Then we have the crunching that is starting. Seems like when I go to stand up or straighten my back I can feel it crunching...lol...is that normal?????? I go back to the DR on the 14th of October...guess I will ask him that.

Every time I go to the Drs he gets out his little pin pricker wheel...that bugger is sharp...anyway he runs it over my ankles...my feet....up my shin...it seems like I have less sensation on the inside of my legs...but they don't hurt like the did.....my God the pain in the beginning was horrible. I remember crying in Jr's arms and then begging him to make it stop....I could not stand up by myself...it was horrible....Thank God that part is over....I just told my husband the other day that I have not had a pain free night since Jan 24Th.....but guess what today our friend died ....he had fought cancer for what seems like years now....he was a nice guy....his wife called this morning and told us Mike had gone.....she is alone now.....his grandchildren have no pap.....I am lucky....I know that....I really do.

I am thinking I need to go back to physical therapy....I am going to ask the Dr to order it for me. You know that is something that I am realizing with this syndrome.....(syndrome.....I HATE that word...what the hell does it mean....does a syndrome go away??????) as I said, I am realizing that with this syndrome you have to almost call the shots....it seems to me that after the initial surgery and you are up and going....you have to take charge and tell them what works because they really do not know....I am not sure I am saying that right...but what I mean is I am the one that thinks I need physical therapy...I am the one that knows my weaknesses and my strengths...so I have to tell them what I want or need....obviously with my medical history the red flags were there and no one .....not one doctor .....mentioned CES....It is almost like they do not know what it is. It always says it is rare.....I like to think I am a rare bird....lol....I guess I just have to get at and go with the flow!

The depression is workable...lol...how is that for a word. When I get depressed I know I have to talk it out....I have to work on not being that person in the recliner that sits and is waited on.....so it is workable. I can still manage to get with the program most days....I am not like I was...and I think really I am mourning for my old self. I want to get up and run....I want to Screammmmmmmmm cause I can't ....I hate this . I am so tired of just sitting around and not being able to do what I want. But I make myself do things....I make myself do something....even if it is wrong....lol.....not really ....I don't really do bad thing ..lol.....but I tell you ...sitting around like this when you cannot sleep...well the things you think about are amazing.. shoulda ...coulda...woulda....lol....kind of like if I knew then what I know now....I would have been much more adventurous....I would have taken that hike or walked down that hill...I guess what I am saying is if I had known or even thought about being like this I would have crammed all the life in that I could have....and trust me....there are people out there alot worse off than me...I know this...I tell myself this every day....some days I laugh and play...and some days I crawl up in a ball and cry.....and that's OK.....I am allowed to have bad days....this is horrible...it has changed my life....I am scared I will never be me again....so it is OK if I need to cry....so with that in mind....the depression is workable... lol... This to shall pass.

Peace and love to you all.......

Lynn

Depression

Ok...so I am finding myself very depressed....I see nothing brilliant going on in my future....I see nothing changing and I am not happy. I should be happy....I have everything I need and more. I have a husband that loves me and treats me like gold....he drinks more than I like but he is good to me...the unsettlement is in me....I am not satisfied....I keep thinking I need a job...but then I think I can't do that....crap sometimes I cannot sit for more than 20 mins or I can't stand for 20 mins...my legs start to tingle and go numb....I don't think I work at this point...so here I sit ..nothing to do but to dwell on the stuff going on in my life....I wonder if they have a pill for that....actually I am sure they do....they have friggin pills for everything......it is nuts.....

I need to go away...I really need a serious vacation.....I am seriously thinking of taking sativa and hitting the beach....just her and I....for maybe 2 nights.....I could really use it.....I wonder if I can Drive for 6 hours to get to the beach....I suppose that is why they make rest areas.....we will see.....

Depression stinks....it really does....my get up and go has got up and went.....I am so done!

7 months post op....

Ok, I am 7 months post op and I swear this has been the longest 7 months of my life....I go from ok...I can handle this...to being the biggest bitch in the world and I hate your guts because you can do what you want and you are not doing what I want the way I want it!!! Hows that for ya? My poor family....I know I am not being the easiest person in the world to get along with and I know deep in my heart they are doing all they can for me to make my life as normal as it can be. I know this....honestly....but it does not change the fact that I cannot get up and go....I am the one that cannot take her dogs for a walk ....or carry her own grocerys in...Crap....grocery shopping is a chore but I would gladly do it if it did not hurt.....it just doesn't seem to end...and it has only been 7 months.

The doctor told me we would talk about what is permanent and not in 18 months....from surgery....so I only have what....11 more months of this....I want instant gratification....thats allll...I want it over with now....I want to get the strength back in my legs....and I know that will come....if the pain would get under control...and the numbness and tingling... I just want it over with.

I still need to take the pain medication the way he perscribed it....2 times a day is not working very well tho....so we will see what he says.....I am starting to worry about going to the pain management clinic....I am not sure what to expect....I think they try all kinds of things like injections and so forth....welllll....I am not sure I want to do that....we will see I guess.

Ok...the last 2 weeks I have been fighting a cold...and I do believe the cold won....I just wish it would leave....I am so over being sick!

Summer is almost over...

I have heard the katydids for several weeks now...that means winter is just around the corner...I am really not looking forward to winter....it is hard enough for me to motivate on bare ground...I can only imagine what slick walkways and so forth will be like for me....guess I will just have to rely on the men in my life to pick up the slack. I think I am trying to prepare myself to be a shut in for the winter.....not really....the thought of it is already getting to me.

I haven't written here for awhile because I have been so busy with kids....seems like I have them alot...then throw in Jr and Jason and my mom....well for someone that does not get around much it sure seems to me that I am busy. I know I am tired. I really feel tired lately.

I thought I seemed to be getting along better and was curious as to whether I really needed the pain medications....well....I decided I would take myself off of them. Well I am here to tell you ....if you decide to take yourself off of any medications talk to your doctor first! I have never been so sick in my life as I was then. I had sweats, sick to my stomach, diarreaha, chills, and my bones ached....Well my son gave me the devil and made me take a pain pill..and within the hour I was feeling better....So what this tells me is that my body is addicted to the narcotics. NOT my brain because I would really like to throw them away...but I can't because I need them for the pain firstly...and secondly I am physically addicted to them and will have to do a regiment of decreasing them to get them out of my system. I would like to think that soon I can pitch them but....if I have many nights like I did last night I may need to keep taking them. My back woke me up this morning hurting....I slept with my legs propped up .....but that did not seem to matter...I was hurting. I get so tired of hurting.

My bladder and bowel functions seem to be returning to normal....I am so happy about that. I would like to think that sexual functioning is returning also....truth is we have very little time it seems for sex....kids kids kids! It is pretty bad when grandma and grandpap have to make an appointment for sex!

The numbness in my legs seems to come and go...my left leg actually seems to be bothering me more lately. I find that amazing...it was my right leg that was affected first! The arch of both feet, the big toe, and second toe and up the top of my foot is numb. I still feel like I am standing on gravel. And omg does it hurt if I step on something, like a pebble or popcorn kernal, omg....it feels like someone is stabbing me in the foot.

I still cannot stand for long periods of time...just about long enough to do the dishes then I am needing to sit down. My lower back starts hurting and it goes right down the back of my legs to my heels.....it sucks getting old!

I am still on the same medicine regiment - except the dr decreased my pain meds by one...so now I take only 2 hydrocodone a day...tramadol, naproxian, and gaberpenten for pain and nerve healing.

!

I still have trouble with depression...I still am having a hard time sitting around all the time....I wish I could get up and run with the dogs....soon.....I am hoping anyway!

Ok....I will try to add more later,

Lynn!

Well here we go again....lol

Thats what it feels like anyway...had a drs appointment today...he did the normal things...we talked about pain and how I am doing. Not much has really changed in the last month....my L 4/L5 are still acting up a bit but he is very pleased with my recovery so far...I am hoping it just continues along the way. I will be 7 months post op on Sept 5th.....actually I think I am doing pretty well. Bending and standing are still a bit of a problem for me...I am still walking with a cane and I have good days and bad days .....so I will continue taking the medication the way I am suppose to and just keep maintaining.

I am still having bladder problems....I really need to be near a bathroom when I get the urge to pee....but atleast I am getting some warning now and I can get there...in the beginning I had a horrible time. I am praying that the nerves that stimulate that feeling heal and heal allll the way. There is a possibility that they will only heal so far and thats' all folks! I suppose that is why the dr told me we would see where we are in 18 months....

Walking....Walking is really a problem for me...toward the end of the day it is hard for me to get up and down sometimes....depends on the day....I find that I cannot walk very far and am really unsteady on my feet. I am hoping that comes back too. I cannot wait for the day to come when I want something and I just jump up and get it....now I have to get in the right position to push myself up with my hands....how old does that sound to you....this sooooo sucks. I am really tired of it.

The Doctor hit on that too...he told me that people with this stuff going on really do have a hard time with depression and he suggests that I get up and go if I can...he said he has faith in me to do it and that he knows I will be ok....little does he know of the days I sit here and cry because I cannot do what I want...I am tired of being depressed and not being able to do what I want to do......oh well....this to shall pass I suppose.

All in all I guess this was a pretty good day.....next doctors appoint is in 2 months....I will be back before then I am sure - I mean here - not the drs office - gonna hold out on that one as long as I can!

Ok ....need to go check the pizza for the boys.....like I said.....here we go again!

peace and love to you all!

Another night....another pain!

Ok...today was a really unsettling day....My body aches and my head and heart are gloomy. I chose to not go to my family reunion today...I think it is the first one I have every missed....Physically and emotionally I just could not do it.....My left leg has really been giving me some issues. I go to the drs on Tuesday....I am not sure if this is due to more herniation of the disc or if it because nerves are healing. I just know that I am still in pain...walking with a cane and missed the first reunion ever in my life. I guess thats the way it goes.



I can't really blame missing the reuion on my health..it was alot of family dynamics too....I just could not handle it...I needed to be home in my own space so that is what I chose to do....hard decision and my mother was not at all pleased but I am sorry ....that is the way it goes....My grandsons and I had a pretty good day....Charlie took off with his dad when he came home and Benson and I hung around the house...he helped me do some stuff around here...they are pretty good kids....I worry about them.....



I seem to be worrying about everything all the time lately and seem to be doing nothing but crying and feeling sorry for myself...I don't like it....I don't like it at all. I need to do something....get off my ass and do something. I just wish this was over.....I miss my independence and I am tired of crying....I just don't understand why this had to happen to me.....I mean if it is karma...shit I must really be a bad one...and then I think ...it is because I need to learn a lesson....ok....whats the lesson and can we speed this up....I want to do like Uncle Kracker says in his song.....smile....I want to dance in the sunshine....I think that is how the like goes....it's a good song.

Ok I am out of here.....hopefully the man of my dreams will visit me tonight. Night all...peaceful
and painless I hope for you all.

August....what a month!

I thought when I started this blog that I would be on here every day...well it does not work like that.....I don't want to keep dwelling on what is going on with my body...but my body does not feel any different really. If your are reading this blog you probably know someone that has CES or you have read about it now...I can check in here every day and tell you that my feet are numb, my legs hurt me, I can't stand much over 20 mins, yada yada yada.....I wish it was over.

At present time my left leg is giving me some trouble....I am not sure if it is nerves hearling or more of the "slight herniation" that was seen in the second MRI....might be time for another MRI.....who knows? I just know I am very tired of the pain ....it never goes away...it gets easier...but never goes away.

I am also fighting with depression. I honestly want to just hide and not have to deal with anyone. It is depressing to sit in this house 24/7....and hard to do anything when you can't stand for very long or walk for very far.....I am so very tired of this. The Dr did change my medication but I am not sure it helps. It seems like all I do is yell or cry...but then a newly divorced son, 2 grandsons that are bouncing off the walls with hormones and parents that are putting them in the middle of shit....and then Jr.......such a good man......he probably deserves better than this....I think when it came to women he got a lemon....worse is at this point I am not really sure I care....I am to tired to worry about what everyone else thinks.......I need to get away from this.....I do not feel like myself...I feel like I am lost and trapped.....I just really do not want to do this anymore.

I cannot imagine living the rest of my life like this....I just can't. I know I can look around and find people in worse shape than me but I don't care tonight. I am the one that can't go grocery shopping by herself anymore...I am the one that cannot walk her dogs....I am the one that cannot carry a load of laundry without hurting....I am over it. I want it to be done. I am tired of crying and hurting. It does't feel very fair to me.
'
Sorry to be such a downer tonight....such is a day in Cauda Equinaville!

I just got my Internet back after I was lost in cyber land for what seems like forever....I read my past post and I have to admit...I am getting better. I really have been feeling better and seem to be taking less pain medication.... My incontinence seems to be getting better...I not get the urge to urinate and have bowel movements too....what a wonderful thing!!! My leg pain at night has subsided...in fact for the last two weeks I have slept clear thruthe night. I now have a tingling from my knees down and sometimes my legs feel numb....it is crazy...makes walking difficult. I am pretty good in the house but outside is not easy for me. I feel really tense for the most part...I think I am afraid I will fall down or something. BUT.......For the first time I am thinking there just may be light at the end of the tunnel. I read on here how people have suffered from this for years...I don't want to do that. I know that I still have a ways to go ...I have my bad days and my good days...I cannot do what I used to do but I want to get on with my life..... this is just a rock in my path...by next summer I want to be walking outside with out a cane....that's my new goal.

My son lost a friend of his the other day...35 with three kids.....this in comparison makes CES a nothing....non existent thing.....so what if I pee myself....I am alive to do it and that is the most important thing. I think I had forgotten that and had started down the I feel sorry for myself path...now I need to remember how lucky I am....I cannot imagine burying my son...it just is not fair.

Life is precious...it is truly a gift.....I wonder what comes next? I know I believe in God....I know I believe there is life after this life and death is a process we have to go thru on our journey...but will we be ourselves when we die? Will we really reunite with our loved ones? Will we account for our transgressions? Did we when we entered this life? I don't remember accounting for anything to a higher power in this life or my last...if there was a last. Is this life just a journey we have to go on to learn the lessons we need to learn in order to pass on to our next life? Or will we be dirt....you know...ashes to ashes...dust to dust. Gone....just gone one day. If that is the case then what is the point? What is the point of caring and being the best person you can be if in the end you get a nothing.... there has to be something at the end of the tunnel. That's why I believe in God I guess.....I have to believe there is a reason for this life and this death ...this journey.....and I have to believe my life is in Gods hands....and I have to believe I will see my loved ones again...on another journey....

Bladder Infections...

I hate Bladder infections...this is about the 5th or 6th one I have had since I had my back surgery....they hurt like crap too. I am allergic to so many medicines that when I get them it scares me. I am always afraid I will have a reaction to the antibiotic they give me. This time (and the times before - because so far so good and it works for me) they gave me Ciprofloaxin..and like I said so far so good.

Today was a pretty good. I got my kitchen cleaned and we had a big breakfast with the boys...then we cleaned the kitchen again...amazing how many dishes you can acquire after dinner is over and you are just hanging around. These boys eat like crazy....wow...growing boys is a true statement! We then played most of the day...they went swimming with thier day and I stayed home...that is like three times I would have loved to have went with them...but Thank you very much CES...I cannot walk back in the woods to the place they go swimming...I just could not do it and we cannot drive there.

After their swim we grilled and they had a water hose battle with their dad and Johnna...onery kids. Like I said it was a good day.

I am hoping that I will have a painless night...usually if I have a busy day my legs hurt me at night. I am hoping not tonight...wouldn't that be great!

I actually am trying to cut down on my intake of pain meds and it seems to be ok today...we will see what tomorrow brings...I hate to hurt...this nerve pain is the worse....sometimes it is in cramps and sometimes it just hurts to touch my skin....that is crazy. I ran out of the naproxin and it was like two days that I did not take it...well on the the third day (when I got them) I noticed that my hands really hurt. I am sure I have arthritis in my thumbs...they hurt....and they were fine while on the Naproxin...atleast I know they are helping something.

Ok...time to get off of here...hope you all have a wonderful night.


Take care,

Lynn!

Another Day...another pain...

I thought today was going to be a good day until about 2 pm this afternoon and I had to pee and it hurt like the dickens...Well hello Bladder Infection.....How are you today? Just one more thing I am tired of battleing....these things hurt. I called my Dr and he is calling in some antibiotic for me...I guess because my bladder does not empty all the way it is just a breeding ground for infections...and they seem to flare up....I think I have had about 4 - 5 of them since I had surgery in Feb. That is less than one a month but still one is one too many.....I actually peed a blood clot this evening...I am sooooo tired of being sick. I don't know how or why this has happened to me...it is not fair and I am so tired of it. I pray everyday for God to make this go away any way he has to...I would gladly lay down and die if I thought I would never get over this...I do not want to live this way...I am tired of hurting....I am no good to anyone this way.....I just do not want to do this any more.

I have physical therapy tomorrow and I am peeing blood ...I have canceled more than I have been able to go...I am getting tired of that also....but I know I do not feel like going tomorrow if I feel this way when I wake up.

My back hurts, my legs hurts and my groin is hurting tonight...I am sure that is the bladder stuff
....on that note...I am going to bed...I was always told when you have nothing good to say - say nothing....that sums me up tonight...I hurt and it is not good.

Not much going on...

yep...not much going on around here now...I seem to be at a stand still with my CES but I have noticed that life does move on....my son is now divorced and the kids are now on a scheduled visitation with their father and I do not have to be involved in that....which is a good thing as far as lessening the responsibility factor and the stress level ....but truth is if the kids are with thier father they are here too. LOL Sooooooooo life does go on.

I had a doctors appointment on the 11th and he seemed pleased with my condition....lol...I love that "my condition" . I thought I had realized that this was a long term thing and that I would have to deal with it on a daily basis yadda yadda yadda...well I am not sure that I am adjusting as well as I should be...but then I guess it is normal to be depressed. I get mad at my body too....it pisses me off that I cannot do what I want and that I hurt. I guess that is all part of it...if you read on the forums it certainly seems to be. Everyone talks about being tired of it and not wanting to deal with it and the pain in the legs. That really amazes me...everyone talks about the unbearable pain.

Last night I had a horrible night....my legs hurt so bad I was up rubbing and massaging and propping them up, then sitting up and letting them dangle from the bed...I actually almost fell asleep sitting up...that seems to relieve my pain in my legs alot...I am almost learning to sleep sitting up...lol...Everyone keeps saying get a recliner and all I can think of is a girlfriend of mine...her father had had a stroke and he sat in his recliner and issued orders and watched tv all day long and was not happy at all...I refuse to go to a recliner...it is just not happening! Whats next a potty chair????? I think not. I may not beable to get to the bathroom in time all the time but I am not giving up and using a potty chair or a recliner....no ......not happening.

I know I took pain pills to close together last night but I hurt. I worry about the pain pills and becoming addicted but I needed them last night.

ok...have company...will finish later.....

Ok back... Jason and Johnna was here...they are funny ....it is good to see my son smile again....I wish them nothing but the best!!! Now back to pain pills...they scare me...scare the shit right out of me...I am scared to death of becoming addicted to them...but then I have night like I did last night and I swear I could have eaten them by the jar full. Eventually they did help and I was concious of what I took and how many but I swear I worried about them the whole time I took them. I guess just seeing what it has done to people around me and then omg ....just watch tv and the reality shows about drugs and addiction...it is scarey. Now I take 4 different pain pills a day...it is craziness. My doctor and I talk about the pain situation all the time and he and I both have agreed that if I need them I need them...and we both worry about my taking too many of them ...but I also made it clear to him that I might have days where I only take 2 pills a day...then I might have days when I take 5 to 6 a day....it just depends on the day. So we are going to start keeping diary. He thinks that I might be getting depressed because I am not realizing that I am having more good days than bad days and if it is in black and white then I will see that. I am going to take it a step further I think and try to monitor my pain pills and how I take them. I know that I take more at night than all day. Jason and everyone tells me that I need to take them on a regular basis...do not wait till I am having pain....I just take them when I need them...maybe they are right but I am telling you my leg pain is horrible.

I am still on the Gaberpentin...I am now taking 1800 mg a day....it makes me goofy and it gives me blurry vision. I had no idea that blurry vision was side effect to the drug. If I take the Gaberpentin with the hydrocodone I get really dull. That is the best word I can use to describe it...Dull....lol...me...imagine that! I could sleep I think on those two easily.

Ok well my leg is reall starting to bother me and I need to get coffee on for Jr. so he can switch me spots....

nite all!

Pain and Day Shift!

Well my Internet was off from May the 26th until about 1:00 today...I was thrilled to get it back I have to admit...I did not realize how much of my day is spent on my computer. I would chastise myself but truth is with this CES crap (can you tell how I am feeling) I really do live a part of my life thru this thing. Partly because I am always reading about CES...there has to be answers out there....and partly because I am bored. Lets add that to the list of things that CES has brought to my life...boredom~! I would love to be able to just clean my house.....I swear...scrub my carpets...I would like to be able to stand long enough to do my dishes without pain almost bringing me to the ground. I am so tired of this.

The Dr has been playing with my pain meds and I am not sure it is working....I seem to be having more pain and break thru pain....he cut my pain meds in half and it is just not working. I have been trying to get an appointment with a neurosurgeon in Cumberland that has a pain management background. His receptionist told me that they were booking in September for Pain management. I am learning first hand what others were talking about in various support groups when they speak of the Drs not realizing the pain we have or not understanding that it is different every day...different symptoms...numbness where there was no numbness ....no one can understand it until they are living it. I have lost muscle mass, my right leg is cold and discolored, painful to the point of tears, but numb also....I cannot believe I am going thru this. I just don't understand why this happened.

I also think I am in disbelief ....my son told me yesterday that I needed to get used to the idea that I would probably never be the same again...that I would have pain and that I needed to realize that and quit expecting so much of myself and start letting people do things for me. My answer to him was that I HAVE to believe that I will get well...that I have to see myself running with the boys...if I do not believe I can do that then I will get stagnant and I cannot be one of those people who give up and just set all day. I just cannot do that....but truth is I am feeling sorry for myself. I have cried everyday for the last week, cried and prayed and told God that I just cannot handle this and he has to take it from me and just give me the courage to get thru the day. It makes me feel better ....like I have given this hardship to someone else to carry for awhile...then I urinate myself on the way to the bathroom and again I am back in my rut of feeling sorry for myself .

I seem to be so mean lately.....I have nothing good to say about a lot of stuff that is going on in my life....lol....my give a dam has busted and for some reason I am not hesitating to let people know that. I don't know if it is the medicine or if I am just tired of the bull crap. I feel like what some people are going thru is nothing and so much drama....it is like I want to say " STOP IT " stop the bull shit.....I so want to get on with my life and be able to drive to the store if I want to and not depend on someone...and the bullshit is floating around....I cannot handle it...I am tired of it....I am done with it....I have more important things on my plate....I just want to walk pain free.
I do not like myself like this and I think that is why I am so mean...it is like I do not have a good word to say to anyone. This is not me...not the before CES me....now I am so self absorbed it is sickening. I am tired of feeling sorry for myself and being mean to people but that is where I am now.....and I am so sorry all the time. I am so sorry that I talk mean, I am sorry my house is not clean, I am sorry I cannot be with my mother to make sure she is ok, I am sorry I am not being a better daughter to my father, I am sorry my dogs are being neglected....I just wish I could get back to being me.....I see no end in sight for this crap. Maybe Jason is right ....I just have to accept it...and try to go on.

Well one good thing has happened this past week. My husband has been on day shift and I realized just how important he is and how much I need him and how much he does for me. I felt very secure when he put us all to bed at night....tucked in for the night....everything I needed for the night. Then in the morning....he is here to help me get out of bed. There are mornings when I cannot get my legs to work and I hurt so bad it is unreal....he rubs my legs and gets me going in the mornings....I don't know what I would do without him. Well to make a long story short he is going back on midnights Sunday night and life will be back to normal....well.....CES style anyway.

My son has been going thru a divorce the last couple of months and it is finally done. It has been very very stressful....I was involved because my son only had supervised visitation with the boys and I had to be involved.....they were here five days a week....and I think it was too much for me...but now I think I have empty nest syndrome and will miss them now that they are allowed to be with their father by their selves...and I can send them home again....almost normal on the aspect!

OK.... that is enough for now....that is an hours worth of talking like a therapy session....I got some stuff out and that is good... I have cried a couple of times while writing this but that is normal...I usually just try to shake it off and make a joke....I just do not feel like joking now....I hurt.

May 22, 2010 and I am still here!

Ha Ha...Did you think I left? Nahhhhhhhhhhhh just been busy I guess. The days all seem to go fast for me really but they also seem to meld into one long day until the boys come...everything in my life at this time is done around Junior, (who really requires the least) , Jason, Benson and Charlies schedules. It is fine but I find myself wearing down ...I am tired....but at the same time I do not want to change things because the boys give me a reason to get up and motivate. Like I said in an earlier blog...if Junior had his way I would do nothing. He finally opened up to me this morning and told me that the reason he is always telling me to go to the bedroom is not because he wants rid of me but because he does not like to see me hurt and if I am up and around the next day I hurt so end of story....go to bed! Thats my husband for ya!

The kids are really attentive to me and my problems of walking and such. Charlie is constantly saying....I can get that for you, or do you want anything grandma? I have noticed he is really a sweet sweet child...he is the first to thank me for a good meal...or for getting him something...he is very tender hearted and has the capacity to love unconditionally. He amazes me with his smile and willingness to help...but on the other hand he has a very shy side too....never really letting you know what he thinks...he just goes on. The lady that snags his heart in the future will be very lucky...she will have love unending by a person that will walk that last mile for her...that is what I see in him. Unconditional love and devotion....that is a very nice quality to have. I just hope he is happy ...thats all I want for my grandsons.

Ok...today I was taking my medicine and I wondered to myself just how many of these suckers can you take in a day time? It is just crazy...I think I am taking something like 9 pills in the morning, 3 - 4 around noon and then about 5-6 in the evening /bedtime....I went to that from taking 3 - 4 pills a day. I feel like I am taking a pill for every thing now days. The Gaberpentin with the Hydrocodone and tramadol still knock me on my butt...they make me get some serious sleep in when I can go to sleep...I have not had a full nights sleep since Janurary 24, 2010....That day now carrys a new meaning for me besides my brother in laws birthday...it is the beginning of my life with CES....it is almost like the day that Kennedy was shot....I know what I was doing Jan 24, 2010.....Do You???? lol

I had Physical Therapy yesturday....I think...atleast that is what Charlie says....I told you Gaberpentin makes me goofy and not remembering seems to be part of my goofiness! We did the regular exercises with the coffee can, and the ball....then I got on the bike and raised the level of resistance to 2 and I actually rode one mile in 6 minutes....I was happy with myself and my therapist seemed to be also. That evening and this morning I have been really tender....I cried this morning when I woke up , but that is really nothing new. My morning pain is excruciating when I try to get out of bed....I think it is because I sleep in one position when I do get to sleep....I have night pain so I sleep with my legs propped up or a pillow between my legs....and I do not move them, so, in the morning when I wake up I am stuck and I have to work up to straightening my legs and trying to get out of bed. My husband always brings me a cup of coffee in the morning and we set and chat and he tells me about his night at work...now he rubs my legs and wants to know what he can do to help me.....he now helps me walk to the bathroom one step at a time and holds me up as I go trembling and afraid I am going to hit the ground...he helps me get on the toilet and never says a word. He sets on the bed and waits for me to be done...and then he helps me back to the bed....tucks me in and gets me settled and back to rubbing my legs and holding me as I have my morning nervouse break down and cry....I cry every day....I don't want to be like this....I don't want to lean on my husband to go to the bathroom, I don't want my grandchildren waiting on me. One more time I say.....I don't want to do this.

I have been thinking about CES and the information that is out there on it. There is none. I wonder really how many people there are out there. You hear so much about how it is so rare and it seems like we all have trouble finding a Doctor that will treat us with real knowledge of what we are going thru...or am I wrong on that? I know we all seem to have pain issues and none of us have been treated with respect - thats the word I am using any way! It seems to me that in every support group or web site I have found on CES everyone is looking for a Doctor that will treat them for thier symptoms be it pain, incontinence, bowel problems, depression, you name it....Doctor where are you? I actually thanked my Doctor for being willing to help me and listening to me....I told him I was amazed that the pain management Doctors just ignore your calls...and most people look at you with a blank stare when you say "Cauda Equina Syndrome" and how people think because you look ok you must be...after all thier backs hurt too! I have heard so many storys of people with back problems that have been told by thier drs to suck it up ....everyone has pain...Well let me tell you...I could not stand this pain with out medication...My Doctor does not question that but at the same time we really are mindful to controlling the pain with the least medication we can. I appreciate the fact that he is willing to work with me and that I really appreciate the fact that he is here for me....and he told me that the reason Doctors do not acted real thrilled when you say Cauda Equina is that there is so much to treat with CES and it is hard to treat..and that there is so little out there about it...it is like learning by treating....but that we are here for the long run and we can do it. I so appreciate his faith in me...it would be easy for me to just go to the furniture store and buy myself a recliner....lol....that is another blog....but I just cannot do that. Not yet.....I need to keep moving right now....I need to still be in control of my life. This syndrome has not yet robbed me of those parts of my independence. My Doctor is determined that we will be ok with this crap....I am not sure. I pee my pant on an average of 3 - 4 times a day, I don't sleep, I cannot walk, my feet are numb and yet I feel like I am standing on glass, I cannot have a bowel movement , I do not function sexually as I would like to, (ie: no orgasm), my leg feels like rubber and most times behaves but then there are those days when it feel like it is gumby dambit! Those are the days that I need my cane and depending on the pain....my walker. But Guess what......I am still here! I suppose that is my lesson and enlightening from this entry on my blog. I always try to take something away from this as I talk out the things that are going on with me and my body. A new understanding of a situation or atleast a new perspective most times....I seem to feel a little bit more in control if I can write about this and look at is objectively and say what I need to say....I am learning about control...mostly that we have none and that we are at the mercy of the Gods....lol....or Karma.....or Gods Plan.....I just know that when we stop trying to control a situation and accept it for what it is ....well that seems to me to be the time when things start falling in place...so I need to learn about control...and that is fine...atleast it is a goal ....and we all need goals.

Ok ladies and gentlemen...if you are out there....tomorrow is a nother day and I am tired...my eyes are blurring and I am yawning ...so good night dear friends...don't let the bed bugs bite!

Peace and painfree times to you!

Meds, the Pharmacy, and me!

Well this weekend went really well....I hobbled around...the nights were painful for me but they always are. I swear I think the nerves are in there having a party or running a marathon from my but to my toes.

My Pharmacy and I had it out yesterday. I ran out of my pain medication yesterday...I had to take extra when I fell and messed up my foot...well it was too early by one day for the insurance to pay for it..I told them I would pay for it myself, how much is it? Her answer was $32.29...so I write the check out....and she stands there and watches me write it out...I hand it to her...and she hands it back to me and says ...."Well the pharmacist said you cannot have it because you should still have some left...(by my count I should have had one day left which amounted to 6 pills that I took because of the fall) I then said...My Doctor called them in for me...it is a new script...she said " You can have it tomorrow" By this time I was so mad and hurting..I felt like she was accusing me of being a drug addict or something....I had just left physical therapy and was starting to hurt by this time.. It was not pretty and I told the old bat that I would not be here to pick it up tomorrow or any other day....and we left. When I got home I called the pharmacy that I used to use - Which is run by a family that has known us forever - I had changed pharmacy's to be closer to moms when I was staying down there when she was ill...it was more convenient for me. Jr stayed at our old pharmacy when I transferred my meds from there - so they had all my insurance on file still and I made them aware of my situation with the back surgery and so on. They assured me that they would help me figure it out. I was so pissed off... OMG! I called them this morning and they had already gotten the Hydrocodone filled for me and was waiting for a fax from the Doctor for my other two meds I needed.....Maybe I am a pill popper...When I was diagnosed with this I gained 3 new Doctors and 6 new medicines......what fun!

So anyway, last night was a very painful night for me ! Actually I am glad that I ran out of the Hydrocodone. I was in pain but now I know that I do need them and it is not an addiction kind of thing...I find myself looking at the clock to see when I can take my next meds and I was worrying about myself. Now I am convinced the pain is really there and is not going away any time soon. I got through the night with taking my Gaberpentin, Tramadol and Naproxin and...are you ready...Horse Liniment from Tractor Supply...I bought it to rub on Sativas hips...I think I used it every hour on the hour..but I think after about the fourth time (it is a lotion) it really did help! I just took the Gaberpentin for my noon dose and I did realize it does help with the pain also..I was not sure it was doing anything ...so this was really a good thing. I am doing ok today...but then days are easier than nights....Nights are unbearable some times...If the Gaberpentin calms the pain down during the day I may be able to cut out the noon Hydorcodone or Neurontin.....the miracle drug! I was not convinced they really would help with the pain but it does...from my understanding it numbs the part of the brain that issues pain messages(lol) and one of the other properties is the it helps to heal the nerve. Do NOT quote me on that....I have not looked them up yet on here or if I did I am not remembering it. That is something too....My memory (short term) is messed up....and I will try to say a word and it is like I cannot get it out sometimes...I think it is the Gaberpentin. Both the Dr and the Physical Therapist told me that it will make me feel goofy till I get used to it. I started out at 600mg a day, then he increased me to 900 mg a day, then on my visit with him last week he doubled it so now I am taking 1800 mg of it a day. My Dr told me that I could go up one more level to 2700 mg a day and we would work up to it. Both he and the PT guy (Bill - super nice!) said this drug was the drug to take. He said it is wonderful once you get it regulated. They use it for seizures also...like I said it calms a part of the brain..so that is Gaberpentin for you! It does make me feel relaxed I can say that...but I am always goofy~~~ LOL! Jason said he can tell when I take it....it makes me slower he said. LOL Gaberpentin is the generic for Neurontin. I am gonna look them up!

So yesterday and this morning I was walking with my walker..the cane was just not doing it...my leg is really weak and it feels like it is going to pop out all the time and yesterday it was used and abused! So I opted to use my walker so I would not fall. Today my girlfriend told me her daughter described me as being disabled....I really have not tried to look at myself in that way....but it is true...I am considered Disabled now. I used to say that I felt if you could get up and go to the bathroom by yourself you were having a wonderful day...I have a much greater appreciation of that now. I don't like the word disabled but I guess that is what I am.

I find myself getting angry at my situation. It pisses me off that I cannot do what I want to do.I cannot stand it....all I do is cook a dinner....and that is only if I can stand and walk to the refrigerator...sometimes I can't stand..and I do not like being waited on.....and my husband insists...he is always telling me to just sit down he will do it. Truth is he is good with meals and carrying stuff for me..helping me get in and out of bed if I am really in pain...he is really very good with that stuff but.......OMG .....housework is not his forte'.......he does not know what doing the dishes is....I think he thought the dish fairy did them! And forget vacuuming and stuff like that....he is a coal miner....and he tells me that when it is time to do the dishes but yet he does not want me to do them either. Now you figure that one out! Jason wants me to have someone come in and clean once a week....I don't know why I don't.....I just feel like my house is too dirty to have someone come in......I would have to clean before I could get a cleaning lady!Lol So anyway, I still get mad at the world....and my poor husband takes the blunt of most of it....I swear I do not know why the man does not divorce me......I think he got a lemon.

I had an attack of something with my bowels today.....I started getting really bad pains in my rectum...it felt like it was up inside - not like a hemmroid .....so I took a Bentyl and went to the bathroom...passed gas but that is all. That to me is a good thing.....at least I am doing that so maybe I will get the urges back...I am hoping so. Being constipated is no fun. I need to incorporate more fiber in my diet and fruit. Such is life!

Well that about covers it for today....I am tired from not sleeping last night so I think I am going to take a nap....by the time I get a nap in Jason will be home and ready for dinner....pot roast in the crock pot...yum yum!

Just another day...

I wonder how many times I will say that before I realize that is how it is gonna be...know what I mean? Today is just another day....nothing spectacular....got my hair done...paid my water bill...went to the Dr's....wrong day....I have to go back tomorrow....lol....went to the bank...got the kids ....ordered pizza and hoagies....hung out and played on Facebook....just another day.

I was suppose to get my foot xrayed but did not want to drive to Oakland - about 21 miles from here by myself - sometimes my foot feels heavy and is hard to move fast so I only drive very short distances and only if my foot does not feel heavy and numb. Just another day!

I have really been in a pissy mood lately...the emotional garbage that has been hanging on in this neighborhood is really taking its toll on me. I am tired of being nice to people and being hurt. I am tired of people deliberately trying to hurt you because......because they have nothing better to do? because they are jealous? because they are ignorant? who knows? You have this stuff when you live in a small neighborhood. I have lived at this lake for 18 years and am still a summer person....lol....I really find it amusing most days, but for some reason I am really bothered by the he said she said bull shit that is floating out of a lot of mouths lately.....this place is so small that my sons divorce is the major news....get the picture? Just another day in the big city! lol I honestly think that feelings like this aggrivates my pain level....I don't know if that is possible but I know it seems like I have more pain on more stressfull days....maybe because your whole body tenses or your blood pressure goes up....might have to investigate that. I am going to have to Google Stress and nueropathy and see what I come up with. I Googled Peripheal Nueropathy last night and learned alot about nerve pain....it will help me explain to my Dr exacty what I am feeling. Knowledge is a good thing!

By tomorrow I will remember that shit happens in a small town....and sometimes people just do not realize that when they break bridges sometimes they just cannot be rebuilt. I never was the kind of person to sit at my neighbors house and gossip about my other neighbor....for years I worked as a medical receptionist....then we moved here, 25 miles from everywhere.....lol....so then I got my dogs and off we went to training sessions...we (me and my dogs) would travel to Pennsylvania, Maryland, Southern West Virginia for training and to go to shows...I kind of did my own thing.....it was my dream to have a Rottweiler I could show...I got him and he was 4 months old when I broke my leg....now I have this CES and he is 3...he never finished his training...and he is a brat....he is my baby boy....lol....see I would rather go to the park with my dogs than visit my neighbors and gossip....just not my cup of tea. So when you realize you are the talk of the neighborhood it kind of hurts. Just another day!

I realize tho that one of the reasons I am having such a hard time with this is the lack of mobility....I don't feel comfortable enough to just get up and run to the kitchen to answer the phone...now I let the answering machine pick it up and don't fret about it....not much I can do about it anyway. I hate the fact that I don't feel free to just get in my car and go....I am afraid to take off by myself....I am frustrated because I cannot clean my house....and the list goes on.

I can sit here and get myself in a funk because my legs are hurting and I have CES and my son is getting a divorce and the sun is not shining and my dog has fleas and the list goes on but I think I will choose not to do that...I think I will try to remember that my glass is half full...that while I cannot run to answer my phone and my floors do need vacuumed God has a plan for me and mine. He knows exactly where this is going..(I hope so cause I can't drive very good yet!)....I could spend my time sitting on the couch feeling sorry for myself, I could turn into one of those gossip people, but I really choose not to do that...I am better than that, although somewhat judgemental maybe....I will work on that! I just really want to concentrate on getting healthy. I want to put myself in a healing frame of mind....I want to be the best person I can be and I want to walk again.....without a cane...then it will be "Just another day"

Pain, Medicine and Doctors....

I have not written on here for a few days because #1 I had the boys and was relatively busy...even on a low key but still busy...and #2 I have had nothing good to share. Then I realized that to be true to this blog I need to share the bad also. So here we go.....

I have had so much pain the last few days all I can do is hang my head and cry.....and pop pain pills....I hate it...I want to live pain free....I want to beable to jump up shove my feet into shoes and grab my purse and run out the door ...well I can't. These days filling the dishwasher (because I can stand in one place) and fixing dinner is a good day. I have driven around here...but there are days when I cannot lift my foot off the floor without concentrated effort...so therefore I don't feel comfortable drving. My legs ache at night....it is pain that comes as fast as it goes ...but the length of the stay is untolerable.....and it comes in waves....then it hurts for the blankets to touch your skin sometimes...yet the leg itself feels numb...say what????? LOL...I have to admit If I was a Dr and I had a patient that described pain like that I would wonder what the hell is up too....I mean really.....how can it be numb and hurt...omg...I just figured it out...it is frigging algebra (sorry mom and dad but with this crap I am allowed one or two f' s but just occassionally, and I will put my 50 cents in Bensons cuss jar!) I swear it is! Two negatives added together in algebra equals a positive number right????? Tell me how that works...you bounce two checks and you do not end up with money in the bank! Welll sorry I actually failed algebra....cried my way thru it in College...it was horrible...just like CES. My teacher was a nice guy too....just like my doctor...but I still failed many tests...and only skimped by the class.

Ok so back to the subject of pain and meds.....I have seen in the two support groups that I belong to that pain is a big issue....healing equals pain as nerves hurt while they heal so pain is a good thing...ok I can buy that theroy...I honestly believe that...soooooooo why tell me that I need to learn to deal with the pain or that is too much...I don't understand why I have to beg for pain pills when I have a legitimate issue..when I can only sleep sitting up because my legs go into spasms the minute I stretch them out..how I can not stand longer than 15 minutes and my legs start to have waves of burning pain from my butt cheek to my toes.....it is not like my back hurts and and xray showed swelling or something that can be dealt with by medication...I HAD SURGERY....SPINAL SURGERY DUE TO DAMAGE TO MY SPINAL CORD AND MY NERVE ROOTS......now understand? I am Damaged goods! Thats how I feel....I hate that I am in pain ...I hate it more that I have to beg my drs for pills...

Now lets move on to Pain Management Clinics....you must have a referral....and they are booking appointments months in advance....soooooooo lets see.....argue with drs for pain meds and maybe go to the pain specialist in three months and hope you can still walk by then . Well try to get an appointment with a pain specialist ....does not happen over night....I am on a waiting list for a dr that is now booking in July....that is 8 weeks...Myabe in 8 weeks this will all be a figment of my imagination....I am just so tired of being ill.

So I have decided that I want to find a Dr the knows something about cauda equina syndrom...well that is a nuerologis ...and I am not sure how you find out if they have had experience with this syndrome or not. I was thinking a university hospital and that is where I have been so I really do not see a doctor change in my future, but I am going to persue the search. Maybe I will google it....Dr Cauda Equina Syndrome ....have to see what I get!

I have stll been having problems with my bowels and with my bladder control. I have no urges for bowel movements but my mom has turned me on to mirolex I think is the name of it....I read in one forum that black licorce helps too...I love black licorece....I have also added activa to my regiment...so we will see. In the mean time the constipation is hard to work with at times and can be very painful. The leaky bladder really bothers me....but it is a fact of life and so far I have been able to go by myself so that is a good thing.

I wonder if I have done too much when my legs hurt me so bad...but I have no one else to do it...there is no one that is going to come in an vaccum my house, or do my laundry. My grandsons do help me by loading and unloading the dishwasher...they help prepard dinner and set the table too.....the like sitting down and having dinner and saying grace.

My grandsons are really a ray of sunshine for me.....they brighten my days....and they like to come here...but it is a hard situation for me to be in and I really do not feel like I cannot change anything at this time. As I told you in an earlier blog, my son is going thru a messy divorce. My son is under supervised visitation with his children until he completes a parenting class...the night my Daughter In law left he shoved her after she had came at him and she called the law so now he has a Domestic violence protection order against him. It is a very very stressful situation as the only way he can see his children is in my presence....well that is fine but here is the schedule...2 evenings a week.....from 4 pm to 7:30 pm - the boys choice so far....we also have them from Fridays at bus time until 4:30 pm on Sunday. Well that means I have the responsibility of cooking for them 5 days a week....I have laundry for them on those days...and then I have to deal with the emotional side with these boys and then lets throw in some emotions and anger from their father and then some from me....have to be honest here!
Not only am I physically tired and hurting I am mentally tired and hurting. Everyone says you need to go away....well that is hard to do when you are walking on a cane...and have all the other health issues to deal with.....like I said it is just crazy.

I am just tired these last few days....have a drs appointment tomorrow and an appointment to get my hair done....so maybe I will have some good news or atleast a better attitude with the hair. We will see....I just know I am in a funk and I am tired and I am tired of pain and hurting, and I am tired of Drama.....I think mentally I am going to a desserted island and lay on the hot beach with the sun backing down on me....

More later,