Trans issues 27.7.19

I can’t wait for top surgery. Things on chest are giving me such a hard time. I feel so ugly and humiliated. This isn’t me when I see them.

Kind of worried with the CRPS on left side. That is the side my left ankle is affected. The way they described how they cut the nerve to the nipple makes me nervous. I could lose feeling but that isn’t a major concern for me. I just want the fucking things off!! The right one might be more of a problem as it is bigger. Swear I have an orange on left and a small watermelon on right. And fuckers are heavy. But it might be that I just hate them so damn much. Worst part is they have become hairy which really bothers me. Becoming a man is so hard. Makes you feel really fucked because you aren’t congruent with how you feel.

The major thing is getting these things off. I would tomorrow if I could but I am being “selfish” waiting for the damn construction of the house to start and finish. I thought it would at least be started but it hasn’t. I haven’t asked my sister for fear of another argument. Been doing small stuff in my room as it is all I can handle.

Yesterday just putting groceries away flared my back up. It really scared me as I couldn’t touch my back without it hurting. I haven’t had that bad of pain since getting cauda equina syndrome x2. I have no red flag symptoms but I didn’t last time. I lost function of my bladder today. Things with it have been messed up since the middle of May. I moved to sit up and reached for my laptop which wasn’t too far from my grasp when urine squirted out. Luckily it wasn’t too much, but freaked me out. That was how I got CES (cauda equina syndrome) the second time. I had severe back pain and then started leaking more than I usually do. The disc was a different level than the first. And according to the surgeon it was huge. He had no idea how I was still walking. Been having intrusive memories most of the night and right now as I am describing it. I’ve never really talked about how I felt about it. I knew what I had and just focused on getting better, making sure I didn’t do what I did the first time, which was basically not having a clue what to do or who to see. I didn’t go to Spaulding, which is a huge rehab hospital because I’ve dealt with their lab and just thought all the people there didn’t know what they were doing. I was wrong and I am glad I was as i got a terrific PT now for my CRPS (complex regional pain syndrome) stuff.

I hope doing all the things I’ve been doing doesn’t cause me to blow a disc that is already herniated. I have herniated discs from levels L2-S1, worse at L5-S1 and again at L2-3 where I had CES x2. My first diagnosis was at level L4-L5. I fear if I have surgery again, I might need a fusion and I’ve heard bad stories about them. No one I know has found relief from them. And the stuff I read was fusions were only to be done on the neck, not the lower vertebrae. That is why I never want to have it done. I’d rather be in pain, but if other stuff is going on like loss of bowel/bladder, weakness in lower extremity, numbness from anywhere waist down (including saddle area and sex organs), then I will consider it. But only if I have a capable surgeon one who has done them a lot of times and have had success with them. I don’t want a neurosurgeon who only does the brain or pituitary gland. The whole thing scares me.

When I was able to see my therapist again (the 16yr one), she kept on telling me I went through a trauma. I stay away from that fucking word so much. I denied it tooth and nail until I started having PTSD symptoms. To this day I cannot go near the 3rd floor of the hospital where I worked. That is where the operating rooms were. I always wanted to see them but not as a patient!

I sent my psych an email about the top surgery and how I felt about it. She will sign me off on it but I really want to have a discussion with her before she does, just to make sure I am ready and she knows I am ready. It is a huge deal and I’ve gone back and forth with it in my mind. From i am attached and what will it mean to not have them there to seeing a man’s chest and saying I want that. I want to be flat and not have these things. I tell you, when they started developing, it threw me for a fucking loop. I thought getting my menses was bad. Nope. Having things grow was not what I wanted. Then to have a mother molest you because of “concern” more than once because one was bigger than the other and sending me to see a cosmetic surgeon when I was 13, fucked with me so fucking bad. I was so embarrassed this male doctor was talking to my mother about it but it would be when I was older. I nearly wanted to fucking die on the spot. I didn’t want them to be the same, I wanted them fucking gone!! I had already started hating my mother since I was 10. This just added to it more. Makes me feel so ashamed I have them and aside from cutting them off, there is nothing else I can do. Makes me feel really depressed, like I am in this pit I can never get out of.

But none of this matters if my CRPS pain isn’t controlled better. I have a date planned to end it. I am trying so hard not to think about it as I want to see my psych again. At the same time, while the cat’s away, the mice will play keeps running through my mind.

CES: Stuff we don’t talk about in normal conversation

CES Stuff we don’t talk about in normal conversation

Bowels:
Could be incontinent, constipation, or loose stool. Everything that is your worse thoughts about it can happen. I know I usually write about pain and depression but I also get a few people that have Cauda Equina Syndrome looking for information/. So I decoded tp talk about the bowels because it is the most horrifying, indignant, humiliating business that someone with CES goes through.

Because we no longer have normal nerve function of the bowel, our pooping system is a mess. We need to keep track of what we eat, what gives us the runs. Also need to keep track of when we go. Forgetting when we last went can give us huge consequences such as impaction to an all out marathon of spending the day on the can.

Most CESers are on a variety of medications that cause constipation. It sometimes can take what seems like a stick of dynamite to get things going and then when they do, all hell breaks lose. Other times we push and strain just to get a rabbit pellet out. This kills me when it happens because it feels like I am pushing a softball out of my anus and instead it’s nothing more than a tiny golf ball. Then because the stool is most likely hard, you get hit with nerve pain so bad you want to pass out or blow your brains out. Nerve pain in the rectal area is so painful you wish you never have another movement again. Sometimes this pain goes away, other times it doesn’t and you are stuck with proctalgia for days. This type of pain is different than the ball in the butt feeling. The ball in the butt is a constant sort of pain that is always there. This nerve pain is like a red hot poker going right through you, causing you to feel pain so internally like you never had before. Luckily I don’t have this pain every day or I would commit suicide. It only happens when I pass hard stools.

I do suffer from incontinence at times with loose stool. I’ve found that I cannot tolerate cottage cheese like I did. It causes the runs and I am on the toilet for the day.

Most CES sufferers try to have a bowel regimen. It involves either the use of laxatives, enemas, stool softeners, or fiber. In some cases, manual evacuation of the bowel is required because the bowel is so weak you can’t push it out. Occassionally or maybe more than not there is the danger of impaction. That usually requires a hospital visit and it can be humiliating.

Getting used to the anxiety of going is not something to take lightly. There are days I don’t leave the house because of fear of an accident. There also are times where even at home I dread going to the bathroom because I don’t know if it will be good or bad. Sometimes even while on a regimen there will be days of miscues and accidents. Finding one that actually works for a good length of time is like finding a secret formula. One day this will work, another day something else will. Everything you have taken for granted before this happened to you is lost. And there is no greater loss than crapping your pants.

Some people have found it helpful to have a poop day. It is a day that is set aside just for that reason, though you can’t always rely on that one day to go. Luckily my condition is not that severe that I require it, but it something to keep in mind to have some measure of dignity and control that we have lost.

Living with CES is hard. You need to keep track of so many thing, fluid intake, bowel output, bladder output, where your feet are at all times so you don’t trip over them. It’s crazy. It’s been a difficult twelve years living with this condition. I’ve lost my dignity more times than I can count. It’s such a shameful condition. Some people can brush it off after the hurt and even laugh about it afterwards but some people are like me, can’t, It hurts not being able to control bodily functions like you used to. It makes you want to throw caution to the wind. Mobility is another issue. If you can’t walk fast enough to the bathroom, that is the worst. Most find that they need a commode near their bedrooms for this reason.

my CES story, first time

I started having back trouble when I was twenty-three.  It was the summer of 1999 and my nephew and I loved to wrestle. His biggest thrill was body-slams on the couch.  He was five at the time.  He was getting a bit heavy as he was a growing boy and I thought I could still handle him.  My back thought otherwise.  I must have thrown the body slam a different way and hurt my back.  After a week and still not getting better, I called my doc for a muscle relaxer and the morons (her office staff) told me I had to be seen first (which was about a week after I called for the script).  After my doctor performed the straight leg lift, I was in agony the next day as I woke up with severe sciatica.  The pain was going through my buttock down my leg.  I called the on-call doc as it was the weekend and was told to go to the walk-in unit.  There was about a three-hour wait.  My godfather was in the hospital at this time so I went up and visited him while I was waiting.  At the end of the three hours, I was in such agony; I couldn’t walk more than a foot apart.  The doctor at the walk-in unit told me that because I was in so much pain, he wanted to run some tests.  I then waited another hour in the ER (they wanted to do a CT (least that was why I thought they transferred me there) as I refused an MRI (I am claustrophobic)), got tired and bullshit as I was in the minor area and people who HAVEN’T been seen by a doctor, are getting taken in and x-rayed. Mean while, by this point, I am in tears from pain and can’t walk, sit, or stand.  I left after an L-spine x-ray was done, which showed nothing but stenosis, and was given a script, for Ultram and Valium (a pain killer and muscle relaxer, respectively).  I then spent the week in bed, literally.  I got somewhat better after a few days, as I could now walk without it hurting so badly and was moving at my less than normal speed.  I thought the worse was over and went about my business until the leg pain started, making it impossible for me to work.  After going through either intense back pain or leg pain for two months (the back pain I could control with ultram, but NO ONE knew what to do with the leg pain and I had no clue what was wrong with it), I got an MRI.  Because I am a hospital employee, I had access to my record.  I wish I didn’t.  The first MRI showed that I had herniations throughout my lumbar spine, the worse at L4-L5 and L5-S1.  That to me meant surgery if I continued to “complain” and I was not going to go through that.  I did physical therapy, but that made me hurt more, so I stopped.  I was in physical pain all the time now which made me depressed.  By October, my depression was so bad and I was doing stuff to harm myself, I got hospitalized.  The EMT that transported me to the hospital told me about chiropractors. I was extremely skeptical as they aren’t “real” doctors.  After about a month more of pain and my boss giving me hell for missing work and not being able to do my job (standing or sitting too long killed me. I could do one or the other for 4 hours before I was incapacitated.  Eight hours was too long for my back), I found a good chiropractor and starting the task of spinal manipulation.  It went well for about 6 months and I was finally pain free for a little while.  I should have stopped when the pain was gone but I wanted to stay pain free so I continued “treatment”.  By October of 2000, my leg pain returned and continued to get worse.  The back pain started again so I was back on the cycle of pain meds and rest and increased my sessions with the chiropractor so that I could be “better”.  By the end of January 2001, due to stress of work, the holidays, and not having a good therapist, I got hospitalized for depression, again.  My therapist that I was seeing in 1999 left in the summer of 2000 and I was without a “real” therapist, which contributed to the increased depression.  I had just started with my current therapist when it was too overwhelming for me to discuss my issues.  The best course of action was to get treatment via an inpatient stay.  Their beds suck and two days before I was too leave, my back was horrible and I couldn’t straighten out.  When I did, my back didn’t like it.  I was in really “bad” pain.  I begged the doc to let me out sooner (like now) and after some talking with my psychiatrist (I was also started with a new med), got discharged and then saw my chiropractor the next day (Friday, Feb 2, 2001).  The chiropractor did something that made me hurt like a son of a gun and did nothing to help my leg pain.  About twelve hours later, a friend of mine and I were at a bar waiting for her husband’s band to play when I collapsed in horrific pain.  My leg gave way and I couldn’t stand on it anymore.  My friend took me home and the next day, I stayed in bed, taking Valium, ultram, flexeril, thinking it was nothing and that I would be ok after a few days.  Yeah right, no such luck.  I got progressively worse.  On Monday, I went back to the chiropractor and she told me that I might need surgery and that if I wasn’t better the next day, go to the emergency room.  I couldn’t make it out of her office on my own and decided to go to the nearest ER that day.  It was the hospital that I was born in and thought it was a good hospital.  NOT.  The doctor there just saw me, gave me some pain shots (tramadol, I think), a script for Vicoprofen and I was on my way.   There were NO MRI or x-rays taken, no instructions to come back if symptoms got worse, nothing.  Mind you I couldn’t walk or feel my left leg like I could my right.  And my left foot was limp.  Oh well, I was fine and all I needed to do was “sleep it off anyway”.  Instead, I got worse. It had started to snow as I left the hospital, and I took a bad fall on my left side as I tried to get in my friend’s car.  Now I couldn’t even stand on my own and the pain worsened.  Two days later (day five of the disc fragment compressing my nerves), I decide to go to my work (the big hospital) and get checked.  I had called my psychiatrist as I had an appointment with her that day.  I told her what was wrong and she freaked out, saying that I should call an ambulance right now.  Up until that point, I just thought I needed physical therapy and good pain pills and I would be fine.  Hearing the stern command of calling an ambulance made me think this is more serious than I thought.  I spent several hours in the ER, and got an MRI at about one o’clock in the morning.   I knew I wasn’t going to be going home that night as by now, I couldn’t move my toes on either foot nor could I feel them.  The look on the radiology tech’s face was scary (she told me not to walk (ha like I could!) and I just shook my head like whatever lady).  This is about one a.m. when the moronic dumbasses (a.k.a. MD’s) tell me I have to have surgery. Until that time, I was goofing off with my co-workers, making the nurse’s life hell, and being a smartass with the residents to see what they really know.  Funny, but now they start freaking out as they have me transferred to a gurney (I was in a wheelchair to and from the MRI, and so that I can chat on the phone to whomever as I was bored as hell) and they put the bedrails up.  They won’t even risk me going to the toilet so I have to use a damn bedpan.  They tell me a disc fragment is pressing on my nerves (CES was NOT mentioned).  The neurosurgery resident tells me that I have to be catherized to check for urine retention.  I tell him nothing is wrong with my bladder, it’s my damn leg, stupid.  After they are huffing and puffing and I am refusing their demands, (they were “scared” to call their attending for a non-compliant patient), I tell them that I am NOT having surgery until after I sleep on it. (I had been up for about 24 hrs now, 14 of which have been in this stupid ER).  Nope, can’t do that. I have to decide right then and there and sign consents and off to the OR in a couple hours.  “NOPE, you are listening to me.” I said.  I said I need sleep and you are going to give it to me, I can’t make “rational” decisions on sleep deprivation like you.  Plus, no one on my “side” has said a word with me.  At four a.m., they paged my psychiatrist and I apologize for the call at this hour but these asses aren’t letting me have my way.  SHE tells me I have CES (Cauda Equina Syndrome) and I lost it as I knew I was “fucked” and may never walk again.  Ok, I will have the surgery but it better be with a board-certified surgeon or no deal.  This is what made all the residents get mad and scamper away.  I feel that residents just out of medical school should not perform operations as delicate as this, least of all on ME!  The board-certified surgeon comes in at 6:30 am looks at the MRI, exams me, then tells me 8:30 I am in the OR and leaves. He has a “great bedside manner”.  About seven a.m., I move up to the neuro floor and when I get there I make two phone calls, one to work saying I won’t be returning anytime soon; the second to my then best friend to thank her for her hospitality over the last few days. I then collapse to tears.  An RN, who is now one of my good friends, ask what is wrong and I tell her that I am having surgery and may never walk again.  I didn’t call my family as in my present condition would have freaked them out and scared the bejeezes out of them.  I begin the count down and my nurse notices I don’t have an IV (intravenous line).  She is angry with the ER and has to page the IV RN, stat.  I hear the page and cry harder, knowing she is coming for me.  Around 8:30, I am wheeled to the O.R., trying to get my tears in control.  It was about a half-hour later that I am put under and want to get the hell away before going through this ordeal (Course if I could run, I would have!!).

I wake up in the PACU (post-anesthesia care unit) and my left leg no longer feels like there is a tourniquet on it, but I now have compression boots to prevent any DVT’s (deep venous thrombosis, otherwise known as a bad blood clot).  I was completely out of it for a while and feel nausea from the anesthesia and vomit, which the surgeon decides to keep me on fluids for the next day or so.  When I am a bit clear headed, I realize I still cannot feel my feet or move my toes.  But I am thinking that it’s still early so maybe it will come back in a day or so.  The surgeon had said that it would be a couple days that I would return to normal.  When I was brought up from PACU, my family was there in my room.  I saw that my parents, who have not been in the same room together for about ten years, were there and I broke down some more.  It was difficult seeing them worrying about me.  The next morning the PT (physical therapist) came in and assessed how I was doing and tried to get me up and about.  That was a joke!  No sooner as my feet are swung out the side of the bed he notices my feet still drop.  He then confines me to bed until I get AFO’s (ankle-foot orthoses).  That was fun as now I can’t do anything but lie in bed.  I can’t even get up to use the bathroom.  That night, a nurse was on that I didn’t know and I had to use the bathroom.  The nurse’s aide came in and gave me a bedpan to use.  This was fine except for the damn compression boots.  I had an extremely full bladder and I now think that the morphine was causing me to retain my urine.  Anyway, here I am trying to go and every time I relax, the damn compression boots inflate/deflate disrupting my concentration!  I screamed at the nurse’s aide to remove them so I can urinate without it being a big deal, as I didn’t want the nurse to have to catherize me.  I finally go after she clears it with the nurse and void a hell of a lot of urine.

The hardest part of the whole ordeal during the time after surgery was realizing that I was no longer independent with my body functions.  Every time I had to use the toilet, I had to have two staff members with me.   One nurse held me up (strength in my legs were still weak) and the other nurse wiped me.  I was twenty-five years old and felt ashamed that I couldn’t do this on my own. It was terrible to feel like an infant in an adult’s body.

My psychiatrist visits me and I tell her that I still can’t feel my legs.  She knows the severity of my condition and I am still trying to cope with all of this.  I tell her the PT says I need to go into a rehab hospital, one that is right around the corner from the hospital.  Seeing that it’s Friday, I don’t think I will be leaving soon so it might be Monday that I am transferred.  Least that was what I thought.  Saturday, the PT comes in and fits me for the AFO’s.  I begin the arduous task of learning to walk again.  I am still in pain from the stitches and trying to get comfortable with the damn compression boots.  After my PT session, I collapse on the bed and cry.  It finally hits me that I am disabled and that I may never walk again.  All the dreams I had of playing my favorite sports (basketball and baseball) with my nephew are gone.  My co-workers come by and give me some stuff animals, which are great, as I love stuffed bears.  My good friend Ivan Hansen gave me a cute little stuffed beagle type dog that I fell in love with and my friends Betty and Dan gave me a HUGE teddy bear that I call Jonny (short for Jonathon, my favorite male name). I often held him during my bouts of crying depression, but he was often too big to stay on my bed (he’s about 3 ft tall!).  I got so overwhelmed at the prospect of not being able to return to work as my earned time and ESL (extended sick leave) were running low. Worries about finances and how to pay them soon left me in a suicidal depression.  My psychiatrist helped as much as she could and referred me to an inpatient psychiatrist that I could talk with daily.  I was now almost three weeks without formal therapy.  My therapist could not visit and there was no way for me to visit her.  Sometime during the week I called to give her an update and asked if we could have phone therapy.  To my amazement, she agreed.  She kept talking about the “trauma” my body was going through and I quickly thought that I did not want to talk about it so much.  (Course I talked about it for a year before I could go back to my regular issues that was the main reason why I was seeing her!)

So much for being able to walk a few days after surgery as it was almost a week before I could just wiggle my toes!  I got excited at the prospect of regaining my weaknesses in my legs.  It lifted my spirits somewhat but I was still depressed.  A few times I have to be watched by nursing staff because my moods were unpredictable.  I mostly wanted to jump out a window, but seeing the only thing I could do was crawl, it seemed unlikely.  I lost some weight because my appetite was decreased.  I was still waiting to get transferred to the rehab hospital.

It’s now Sunday, ten days post-op.  My nieces and nephew came to visit me and I am not feeling great today.  I go back on the bed where my niece accidentally kicks me in the back.  The stitches were removed that morning and my back was still sore.  I thought nothing of it and called the nurse for some pain meds.  Two days later, I am running a fever.  They rule out the usual, such as pneumonia and urine infection.  So far nothing indicates that there is a wound infection until the next day.  On Wednesday, February 21st of 2001, I notice a stain on my underpants that is on the elastic part of the waistband. I tell the nurse on duty and she calls in this nurse specialist (what an outpatient clinic would call a nurse practioner) and they page the attending doctor.  My surgeon and psychiatrist are on vacation that week.  The attending neuro-surgeon pushes some of the muscles in my back, which further breaks the pus pocket that has formed.  They tell me I need to have an MRI to determine how deep it is and I need to have surgery to drain and remove the infection.  I say I rather die than go through another endo-tracheal anesthesia.  The MRI shows that the infection is way down in the surgical bed and I thank god that I haven’t been transferred, as god knows what might have happened.  I finally consent after everyone talks me into another surgery as its urgently needed.  I am scared beyond belief.  Later that night, as I am wheeled again into the OR, I further panic as there is a fellow and an intern doing the anesthesia.  I don’t think I am going to wake up after this one, just sign my name and get control over the tears before I am placed under.  I come up from PACU and I am much more ill from the anesthesia the second time around than the first.  It takes me two days to recover from the anesthesia.  During this time, I am having trouble urinating on my own so the nursing staff has to catherized me least twice a day.  I am on good antibiotics so I don’t have to worry so much about a urinary-tract infection.  About this time, I find out that I am in acute renal failure from the antibiotics and one of them is extremely high so I have to be put on one of the less strong ones.  I now have to have a Foley catheter placed in my bladder as I am not urinating on my own.   A few days of this and my liver enzymes starts going up and I am placed on a stronger antibiotic with less liver damaging effects.  Because I was on an extremely high dose of neurontin, and my psychiatrist was away, it made me dopey and sleepy (course this time around, I was in a lot more pain and physically not up to par).  Once she came back, she quickly adjusted the dosage due to the renal insufficiency and I was less sleepy.  This second surgery kicked my butt as my stamina got down to nothing.  All it would take was a few steps before I was totally exhausted.  I also suffered from blood loss from the surgery that contributes to me feeling weak.  I have always been borderline anemic and this made me total anemic, almost to the point of having to receive a blood transfusion.  I remember during my in and out phase, that a co-worker came up to see me.  I thought he visited me three times.  I later learned that I passed out on him three times!  I spent about another week in the hospital.  I was seeing patients who just had a stroke and the like being transferred to the rehab hospital and I am just sitting there on my bed, watching the soaps or just trying to gather enough strength to make it to the lab (where I work) to check my email and say hi to my co-workers.  I am getting sick of being sick and want to go home.  I talk with my doctors about home care and they are willing to try it seeing that I can make do around with some support on the walker using the AFO’s.  The strength is back in my right leg and my left is getting a little stronger each day.

Luckily the second surgery didn’t make anything worse neurologically, even though I was in a lot more pain.  By the end of three weeks, I left the hospital.  I got home care so I could continue the IV antibiotics and have home physical therapy (PT). Least, I thought someone would come to my home and give me the antibiotics and instruct me in PT.  A nurse came to my house the day after I got discharged.  It took her a while to find my house as we had just got slammed with a snowstorm that morning and my streets weren’t exactly plowed as I live on a somewhat isolated area.  She got there and did her thing and informed me that she would set the IV up so that I can administer the vanco (vancomycin, the antibiotic used to treat my staph infection).  After a few days I mastered it and had the flow going good until one night I tripped over the tubing with the IV stand and the vanco gushed all into my living room rug.  I was cursing the home nurse for letting me do this on my own.

PT at home was a joke.  The therapist never stayed more than fifteen to twenty minutes (I timed it right with my soap operas and commercials).  She came like once a week, maybe twice if I was “available”, like I was not going to be home.  By this time, I was going downstairs to my room (I lived in the basement) and that was my physical therapy.  I found that going up and down the stairs helped tremendously with my balance and strengthened the weaknesses in my legs.  I slowly graduated to the cane after about two to three weeks.  I was moving slow, but with my left foot dropping, or rather slapping, it was the best I could do.

Three weeks into being home, I started to run fevers.  I was careful with the flushing of the IV and making sure the PICC line (a type of special IV placed in my arm) was covered so that I didn’t get an infection.  Plus with me being on a strong antibiotic, I didn’t think I could possibly get an infection.  I went to see my PCP and my white count is still slightly up and I still am in slight renal failure.  My doctor is pretty on the ball and was concerned.  I wait it out a couple days and then I am to call him if I still am having fevers.  I was and called him.   He tells me to go to the ER.  Great…I go and I am placed in the same damn bay I was the first time I was in the hospital.  I freak out and make everyone’s life hell.  The resident wants to do blood cultures and I tell him my doc did on Monday and they are negative.  The nurse comes in to start another IV and I tell her to screw.  The resident wants me to have another dose of vanco before I get discharged and I tell him my surgeon said I don’t need it so I am not going to.  I knew that if I did, I would have had to stay another damn hour in the bay and I didn’t want to.  I was already there for about eight hours.  The resident says he will remove the PICC line as they think it’s infected.  I say fine.  But they need to do blood work.  That’s when I tell them that only one person can do it and that is one of my co-workers who does phlebotomy.  He says no and then I tell him, tough luck then.  I am getting a kick out of having this much say over my care and telling them how I want to be treated.  My friend comes down and draws off the cultures and no sooner has she sent my blood off to the lab that the nurse comes in with my discharge papers.  Whoohoo, I can finally leave this place and never return again!  As I leave, one of the neuro-surgery residents comes chasing after me as my surgeon sent him.  He looks over the discharge papers and has me come back to the ER so he can do something.  Why, I am not sure.  He doesn’t exam me, probably gets the heads up from the nurse or the resident that I am a “non-compliant” patient and then lets me leave.

It’s now the middle of March 2001.  I am trying to get adjusted to the weakness in my legs and trying to feel normal.  I still have low stamina and it doesn’t take much for me to become easily fatigued.  Because of the winter and snow and ice, I can’t really walk outside.  I also would feel embarrassed as all my neighbors are older folks and here I am, younger than them by forty or more years, and have to walk with a cane or walker.  My balance is still off and my left foot “slaps” when I walk.

Frustrating day

I got the cookie dough that I ordered weeks ago and wanted to make cookies tonight but that didn’t happen. Both of my feet have decided that if I try and stand on them, they will attack me with cramps. So I am again stuck in bed to rest my legs and feet. I sometimes wish I had a TV in my room just to have something to do other than this laptop. I know I can watch movies and such on it and can probably watch HULU episodes of stuff but I like to sit on the couch and watch TV not on my bed. Don’t get me wrong, sometimes I do like to watch a good movie while snuggling with my pillow. But other times I rather watch it in my living room so I can have a snack and drink something without having crumbs in my room.

Had a doc appt that went ok though now he wants me to see a surgeon for my CES issues. I’m scared as I never had to deal with this before and it is an embarrassing issue. It has to deal with the bowel. I no longer have normal function of my bowel since my second CES (Cauda Equina Syndrome) diagnosis. I can have accidents of my bladder as well.

The reason I have been referred to a surgeon is because my farts are causing me to have hemorrhoids and there is some fecal incontinence as well. CES’ers like to call these “Sharts”. I find them killing my dignity and sending me into a suicidal crisis every time I have an accident. It’s not that often, but it has been becoming more frequent with my bowels being more “softer” than they have been. I’m not sure if it is because of the new diet pill I have been taking or what but whatever makes me go poop, I am for it. I usually take Senna for it as it is the only thing that works without horrible stomach cramps.

The loss of dignity is what kills me inside every time I urinate on myself or have a loose bowel or my childhood favorite, skid marks. Those usually happen because I didn’t realize I didn’t stop pooping.

This has been difficult to write and I want you to know this because I think there maybe a few people out there in similar circumstances but think they are alone. Those with this nerve injury are constantly fighting their dignity and what it was to be normal every day of their lives. It take a tremendous effort to get through the day without falling apart every day. Today I couldn’t make cookies and it bummed me out. But tomorrow I can, possibly. Well I hope to before Thanksgiving anyways. I know there are people out there that say make each day count but when you only have so many spoons to deal with, it makes each day harder and harder. What is ok for today might not be that way tomorrow. I know that I stood too long today while talking with my former co-workers and that is why my feet are angry with me.

The bowels are a mess because I don’t go every day. Chronic constipation from medications suck. If I don’t take Senna every day or every other day, I suffer from horrible gas and the wet farts that cause hemorrhoids and make my bottom uncomfortable. And now I have to have someone check my bottom for something or for advice on what to do with this incontinence that I wish I didn’t have. I just hope that it doesn’t cause me to become a suicidal maniac…