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