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~