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!