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!
Saturday, May 22, 2010
Wednesday, May 19, 2010
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!
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!
Thursday, May 13, 2010
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"
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"
Wednesday, May 12, 2010
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,
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,
Saturday, May 8, 2010
Physical Therapy
Well yesturday I had my first physical therapy appointment. I am scheduled to have 2 appointments a week for who knows how long. He spent most of the time evaluating me and told me I definately had a bad gait....lol....I was thinking to myself...hmphhhhh you should see my fence~! lol No seriously he said I definately had some nerve damage and my reflex in my right leg was almost nil....that kind of impressed him...I am learning that when you impress someone in the medical field that is not a good thing. I never thought of it like that before but I guess it makes sense...to a doctor a mundane old cold is boring...but give him double pnuemonia with a bronchitis kicker and you have his attention and he is impressed!
He also told me that I was using my cane wrong. I had no idea. If they told me that at the hospital before they released me I really do not remember it. Evidently a cane should be held in the hand opposite of the leg/foot that is affected. In other words....right leg weakness - cane held in left hand. I was walking with my cane the way I did when I broke my leg - it was right for that injury but opposite for this stuff. So I did learn that. He gave me some exercises but for the life of me I cannot remember them....is short term memory loss a symptom of CES????? I know for a couple of them I used a ball - so I am going to buy a ball at Walmart this weekend - that ought to make the kids mad....a ball and they are not allowed to play with it...well I know Walker would kill it and Benson and Charles will fight over it so....NO BALL! lol
I am going to ask him if they have exercise sheets that show you how to do the exercises or lists what they are for a reminder so I can do them at home. I really think Physical therapy is a necessary evil....lol
He also told me that I was using my cane wrong. I had no idea. If they told me that at the hospital before they released me I really do not remember it. Evidently a cane should be held in the hand opposite of the leg/foot that is affected. In other words....right leg weakness - cane held in left hand. I was walking with my cane the way I did when I broke my leg - it was right for that injury but opposite for this stuff. So I did learn that. He gave me some exercises but for the life of me I cannot remember them....is short term memory loss a symptom of CES????? I know for a couple of them I used a ball - so I am going to buy a ball at Walmart this weekend - that ought to make the kids mad....a ball and they are not allowed to play with it...well I know Walker would kill it and Benson and Charles will fight over it so....NO BALL! lol
I am going to ask him if they have exercise sheets that show you how to do the exercises or lists what they are for a reminder so I can do them at home. I really think Physical therapy is a necessary evil....lol
Thursday, May 6, 2010
Depression
OK...so here we go ....admitting that I am having problems with depression is a hard one for me. I always thought of depression as a way to get out of life...if you don't like how your life is...get off your rump and make some changes...Do something...sitting around will make anyone depressed....Honestly if I get really depresses the best thing I can do is clean something...I never really believed in depression..My glass is always half full....I would not have it any other way....Like I said - I always thought it was an excuse not to be responsible and take charge ...it is like giving up....Maybe that is why I am having trouble accepting this state of mind I find myself in...... Maybe because I feel such a lack of control....I cry for no reason...none at alll...and I cannot stop.......or maybe it is because I fear it is a sign of weakness and I cannot afford that at this time...I have to be strong and do what I have to do.....I am just so tired of this...I am tired of the pain...I am tired of sleepless nights. I keep wondering why the pain is worse at night...but then I guess no one really knows the answer to that - it just is, and that seems to be a common factor for people suffering from Cauda Equina Syndrome.
I just realize what makes me cry is also the helplessness...I hate to depend on other people...and I hate asking for any help of any kind.....and then I am so picky...I swear I would walk out on me too.....no one has but why my poor husband has not is beyond me....I go off and yell and cry and scream and say horrible things and then cry more and he just handles it and holds me and lets me cry and always always always tells me he loves me....he got ripped off. He should have a wife that is energetic and able to take care of him and his house...he works hard and deserves that...I just wish I could take care of things the way I used to. That is what makes me cry....
We get the kids this weekend...that will help with the depression too....they give me something to do...even if they have to do half of it themselves....Charlie likes helping make french toast and Benson is pretty good at baking skinned chicken breast with Lemon Pepper...that is his secret - LOL..do not tell him I told you that.... at any rate ....we have a good time and they occupy my mind and keep me from feeling sorry for myself. This divorce stuff is crazy....Jason seems to be doing well tho...he is just concerned about his children. They are the important ones and we just want to have a good healthy happy atmosphere for them to be in...LOL....yeah right..with a crazy grandma and pap....oh well....maybe they will take good care of us! I know Benson and Charlie both have stepped up to the plate as much as two kids could...they help me load and unload the dishwasher, gather laundry and transfer it for me from washer to dryer to me for folding, Benson Swiffers the kitchen....Charlie could careless some days but he is good about getting things for me...he will see me get up and he always says..."Grandma I would have gotten that for you" and he would have. He is my smiley one...always wanting to please...Benson is the control freak...hmmmmmmmmmmmmmmm wonder where he gets that??? The boy seem to be holding up pretty well as far as their mom and dad splitting up...well it has been a lot for them since March....they have moved twice....now they are closer to us...and that is a good thing....but it is still not like having them next door. I miss them running in and out during the week...and I called Benson everyday when he lived next door....now they have no phone....I miss the phone calls. I know that Jason's divorce has been part of the depression I am experiencing...I am learning that it is his boat to row....and his race to run...but it is very hard when you see your child hurting....mom used to be able to kiss the boo boos and make them go away....doesn't work that way now.
So back to the depression...the Doctor has me on Cymbalta 60 mg a day and I take Lorazipam if I am having a really ruff day...some days I just cry for no reason...is that depression or is it just pent up feeling that need to escape...I know I always feel better after I cry...so I like to think normal release of emotions. This syndrome is very frustrating....no one understands because I look fine....I sound fine....yeah my back hurts too....my legs get numb too....well that is fine and dandy ....I don't know how to answer you....maybe you are better with pain and numb legs than I am....all I know is this is what it is and I have it....and it is mine to deal with and no one can do it for me sooooooooooooo I am going to allow myself a depressed day or two during this healing process. I am going to allow myself a good cry if I feel the need. And if I feel angry and the need to throw my shoes in disgust because I cannot do what I want I think I expect you to understand that too.....shit.....I don't want much huh? I just want this to be over.
I was not depressed when the Doctor told me that in a year and a half we would see where we are...I was fine with that..I thought ok...then if it takes that long you are doing ok....well now I feel like a year and a half is going to be forever....I am tired of hurting. No magic cures....maybe the physical therapist will have some help for me....or atleast some answers.
Ok that is all for the night...I am tired and guess I will put something on the tv that is worth falling asleep to....ha ha...probably not a thing on!
Night all!
I just realize what makes me cry is also the helplessness...I hate to depend on other people...and I hate asking for any help of any kind.....and then I am so picky...I swear I would walk out on me too.....no one has but why my poor husband has not is beyond me....I go off and yell and cry and scream and say horrible things and then cry more and he just handles it and holds me and lets me cry and always always always tells me he loves me....he got ripped off. He should have a wife that is energetic and able to take care of him and his house...he works hard and deserves that...I just wish I could take care of things the way I used to. That is what makes me cry....
We get the kids this weekend...that will help with the depression too....they give me something to do...even if they have to do half of it themselves....Charlie likes helping make french toast and Benson is pretty good at baking skinned chicken breast with Lemon Pepper...that is his secret - LOL..do not tell him I told you that.... at any rate ....we have a good time and they occupy my mind and keep me from feeling sorry for myself. This divorce stuff is crazy....Jason seems to be doing well tho...he is just concerned about his children. They are the important ones and we just want to have a good healthy happy atmosphere for them to be in...LOL....yeah right..with a crazy grandma and pap....oh well....maybe they will take good care of us! I know Benson and Charlie both have stepped up to the plate as much as two kids could...they help me load and unload the dishwasher, gather laundry and transfer it for me from washer to dryer to me for folding, Benson Swiffers the kitchen....Charlie could careless some days but he is good about getting things for me...he will see me get up and he always says..."Grandma I would have gotten that for you" and he would have. He is my smiley one...always wanting to please...Benson is the control freak...hmmmmmmmmmmmmmmm wonder where he gets that??? The boy seem to be holding up pretty well as far as their mom and dad splitting up...well it has been a lot for them since March....they have moved twice....now they are closer to us...and that is a good thing....but it is still not like having them next door. I miss them running in and out during the week...and I called Benson everyday when he lived next door....now they have no phone....I miss the phone calls. I know that Jason's divorce has been part of the depression I am experiencing...I am learning that it is his boat to row....and his race to run...but it is very hard when you see your child hurting....mom used to be able to kiss the boo boos and make them go away....doesn't work that way now.
So back to the depression...the Doctor has me on Cymbalta 60 mg a day and I take Lorazipam if I am having a really ruff day...some days I just cry for no reason...is that depression or is it just pent up feeling that need to escape...I know I always feel better after I cry...so I like to think normal release of emotions. This syndrome is very frustrating....no one understands because I look fine....I sound fine....yeah my back hurts too....my legs get numb too....well that is fine and dandy ....I don't know how to answer you....maybe you are better with pain and numb legs than I am....all I know is this is what it is and I have it....and it is mine to deal with and no one can do it for me sooooooooooooo I am going to allow myself a depressed day or two during this healing process. I am going to allow myself a good cry if I feel the need. And if I feel angry and the need to throw my shoes in disgust because I cannot do what I want I think I expect you to understand that too.....shit.....I don't want much huh? I just want this to be over.
I was not depressed when the Doctor told me that in a year and a half we would see where we are...I was fine with that..I thought ok...then if it takes that long you are doing ok....well now I feel like a year and a half is going to be forever....I am tired of hurting. No magic cures....maybe the physical therapist will have some help for me....or atleast some answers.
Ok that is all for the night...I am tired and guess I will put something on the tv that is worth falling asleep to....ha ha...probably not a thing on!
Night all!
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