Losing Control, Part 2

 I remember trying to tell the nurse's that I was not suppose to take the Glyburide unless my blood sugar was over 200. They continued to give it to me 2 times a day. They told me that I had to take it as they where giving it to me or be kicked out of the program? This program was my hope to get better. Needless to say, I continued to take the medicine, against my better judgement. It finally caught up with me one day. I was sitting in class and for the life of me I could not stay awake.  I could feel myself fading out.  After a short time, Iwas rolled across the street to the nurses station and put in a bed.  I tried to tell them my blood sugar was way down and that i need some sweets, but once again they acted like I didn't know what I was talking about? I was sent to Stonecrest hospital in an ambulance.

Losing Control

 After several months of trying to go to TRC part-time, I switched to moving to TRC and going full-time. In order to do this I moved in  to the Medical dorm. There were other floors to live on ,but to live on those floors you had to be totally independent. I could not get a bra on myself to save my life. On our floor we had one bathroom, one shower, that 8 rooms shared.  Talking about giving up your privacy! I had to give up my medicines to the nurse's station.  I was not comfortable giving up my meds,  I knew my medicines if I didn't know anything else.  It scared me because the line you had to wait in to get yours meds, it was like a line of a bunch of cattle going to slaughter.  I understand that people are human and that mistakes can be made. Of couse, I knew my meds, and wanted to take the time to go through each med to make sure I had the correct medicine. The nurses were trying to get all the cattle through the line, and they didn't appreciate me checking my meds. The scary thought is that there were people at TRC that didn't have a clue what they were taking or what they were suppose to be taking. I was not allowed to keep my nitroglycerin on  my person. If I was to need it I would have to get back to the nurses station to get it. To me that didn't make sense?  This would later change after an incident one night. After all of the changes from moving from home to TRC, and being around people constantly the stress was really building up. One night I woke up with chest pain, I pushed the call button, an Bernice came to check on me, she then had to get in touch with a nurse, then the nurse brought me a nitroglycerin tablet. After that night I carried my nitroglycerin with me. I started having trouble with my blood sugars, but its hard to control your blood sugar if you don't have control over what you eat. We had a cafeteria, but they did not carry  food friendly foods for diabetics. After talking with the dietitian, this did improve a little they at least started serving more vegetables?  The problem was they thought corn was a great vegetable, and I agree it is tasty, but corn, white beans, and corn bread can mess with your blood sugar. I was taking a pill called glyburide, this I was suppose to take if my blood sugar was over 200. I could not get the nurses to understand how I was suppose to take the pill. They called Dr. Beuter's office and explained to them that they had to have a specific time to give me the pill. I tried to explain to them that Dr. Beuter had told me not to take it unless my blood sugar was over 200, but they started giving it to me 2 times a day. My gut told me this was not right, but they said they had spoken with Dr. Beuter. I did not trust the nurses judgement ,but I trusted his judgement. I should have called him myself.  They were giving me the glyburide no matter what my blood sugar was running.  During this time I was trying to go thru their process to self-medicate.

Demented Mind

 I had been going part-time to TRC.  I started going as a full time student. I would still get up around 3:00 A.M. to get ready in time for the "short bus". T he days were much now much longer. . By the end of the week, I was mentally drained and wore out physically. I was still trying to get control of my "emotions". I just knew  "I" was still in there! It is really hard to accept that you will never be who you were before a stroke. Where did my self- confidence, sense of humor,clear thinking.calmness, caution in thinking, where did they all go? In their place I have a clogged confused brain, a arm that doesn't work, a leg that works partially. a voice that I feel sounds like "Forrest Gump". Words that before  to me sounded normal, easy words like funny, money, mixed with a southern drawl, sound like fuNN -NEY, and moNN-NEY, What to me is strange is that when I say the words in my head they sound "normal", but when they come out sound totally different.  Eating is different, I now eat like every meal is my last meal, and end up with just about as much food on the floor and me that I eat. I still don't understamd WHY? I had finally started getting use to the routine  at TRC.   In the afternoon when the "short bus" picked me up I  could get home anywhere from 4-8 P.M. T he main problem I was having was being able to stay awake by the end of the day. The other big problem I had was reading? Anytime I tried to read or think about something, it was like I could feel all the energy leaving my body? My eyes and brain would just shut down; like a drained battery?

Day to Day

When I first started going to TRC (Tennessee Rehabilitation Center) , I started out part time. I would go Monday, Tuesday, and Wednesday. I would catch a ride with Mid-Cumberland Transportation, or as I called it the short bus. They would normally pick me up around 7:00 A.M. I would have to get up around 3:00 A.M. to be ready by 7:00. Just one of the challenges I have to get ready. Before the stroke I could get a bath and get ready in 30 minutes.  Now it takes me a good hour to a hour and half to get a bath. It then takes me another half hour to and hour to get my clothes on. For you women that have had a stroke, if you have any suggestions for an easier way to get a bra on , please let me know? My" girls" are to big to go without a bra. I have to make sure someone else gets the bra hooked before everyone leaves. I haven't figured out how to get it hooked with one hand at this time. I can  no longer just slip my arms in and pull a blouse over my head. I  have to get the non-moving arm in the sleeve first , then work it over my head then the other arm in and get it adjusted to wear. Buttoned shirts are out of the question! I can not figure out how to get them buttoned? Jeans or pants with a button,snap, or zippers are out of the question! I would like to challenge everyone with two good hands to try and just use one hand to get a pair of jeans on with one hand! I only wear pants with elastic in the waist. Dresses are out of the question for several reasons. I haven't figured out how to put  hose on using one hand yet? I can't control my left leg to keep it closed! I am afraid I would constantly be in trouble for indecent exposure! Sandals are out of the question. I would love to be able to wear flip flops and sandals. But the only shoes I can wear are some tennis shoes with supports in them to keep my left foot from turning so that I  can walk! I have always hated shoes! Shoes are to confining! Now I have gone off in a tangent and got lost in the story, I apologize! Let me get back on track here.  I would catch my ride on the "short bus" around 7:00 A.M. I would arrive at the TBI building around 8:00 A.M. I would get my schedule on Monday for the week. We would have classes from 8:00-10:00. We would take a break from 10:00-10:15.  We would return to class until 11:30 and then go to lunch. Lunch was from 11:30-1:00. We would then have classes until my ride came around 2:00. It would depend how many people was on the "short bus" as to what time I got home? It could be any where from 4:00 P.M.  to 7:00P.M. I didn't realize how my stamina was different now than it was before the stroke? Before the stroke I could work 12-14 hour days and still do what I had to do at home. By the time Wednesday rolled around I was SO tired! I really enjoyed being around people again for the most part.

"Controlled Enviroment"

  I finally have arrived at TRC! This would prove to be a hard and joyous journey at times! I would meet some really GREAT people along this journey. We were all there trying to overcome some problem. I was in the TBI (traumatic brain injury) program. There were several other programs on campus, but they were across the street in other buildings. The TBI program was in a building separate from the other buildings. There were a lot of rules! I understood the need for the rules. If not for the rules it would have been utter CHAOS. For example, in the TBI program we would have 16 to 18 students in a classroom. I know for myself, I had problems holding a thought long enough to have a conversation. If I didn't say it when I was thinking a thought the thought could be lost.  With several others having the same problem, it could have been a nightmare, with all of us trying to talk at the same time. When I first arrived at TRC I was still having a lot of problems with the "winnie-crynies". It is embarrassing to just start crying for no apparent reason. It was at this point I realized that I could not control the crying just because I wanted to control it. Dr. Fletcher  refered me to the "winnie-crynie" doctor. I am sorry I can't remember her name. She put me on a low dose of Celexa. Celexa is a drug for depression. My understanding of the whole situation was for anybody that had a brain injury the crying is a natural part of the brain healing.


The Celexa did help. It sure isn't a walk in the park, dealing with the healing part.  I had to deal with the anger, the grieve, the feeling of helplessness.  I  was angry with myself. I believe I had been having mini-strokes weeks before the "big event". It wasn't that I was ignoring the mini-strokes, but I felt I could not take off work to go to the doctor. I could not afford to miss my pay if I took off to go to the doctor. I was afraid of losing my job if I took off to go to the doctor. If I had known then what I know now, none of those reasons would have mattered.  I ended up losing it all anyway, and so much more! Listen to your body, it is talking to you all the time. Weeks before the stroke my brain felt like it had short circuits. I would be driving, and I would need to put my blinker on, but I would turn the radio up. I found myself when having a conversation with someone, I would give an answer that had nothing to do with what we were talking about at the time. I felt at times I would be "blacking out"?  I should have listened to my body! I could only be mad at myself! Nobody could have beaten me up better than I beaten  myself up? I had to grieve the old self lost. I feel the person I was before the stroke died with the stroke? Maybe I didn't really know myself before the stroke?  Where did that person go that could handle two or three things at one time? Where did that person go that could read and comprehend what she was reading without feeling like it drains every brain cell in her body? Where did that person go that felt like there wasn't anything she couldn't do if she put her mind to it? Where did her sense of humor go? What window did her social skills fly out of? Where did she go? I had to realize that she dead! I had to let her go. and realize what I was left with is who I am now!

Brighter Day

   Now that I had figured out how to sit and get  my body somewhat to work together. It was my time to try the "walk simulator". The first thing they do is put you in the "braces" to hoist you up to the machine. Once you get to the machine it hoist you to the standing position. In the standing position you try to "pretend you are walking." The machine monitors many things, but none of it made sense to me? Some days I would do better than others.  For me there were more things to worry about than just trying to walk. I worried that I would have spittle coming out the side of my mouth. I am not a vain person at all. It did bother me though to have  slobber coming out of my mouth and not know that it was there. Kelly was really good to let me know that I was drooling.  At the time I didn't have a purse with me. So I had to improvise my bra became my purse. They would joke with me about how much I could store there! I would keep my schedule, hankerchief.mirror,chapstick and pen. The mirror was to keep check on the drool. The hankerchief was for the drool.  T he schedule was to see how much reasoning you had left ? I believe also, to see if you had  if you had a brain left after your brain fart? While working on Physical Theraphy and Occupation Theraphy I was still working on Speech Therapy.

   Speech for me proved the most difficult! Speech included much more than leaening to speak again. It included comperhinsion,reasoning and stamina. I thought with comprehension, hey I got this with no problem! It proved more difficult than I thought! I was still having problems with the vision. I would learn much later the problems with my vision. The stamina was hard because after looking at anything for a few minutes I felt my eyes just shutting down.

Mind Games

  When I first started working with Amanda (my Speech Therapist) the difficult task for me was determine what real and  what my mind was seeing at the time? I would cry at the drop of a hat, and crying was one thing that I didn't want to do! I felt I was weak if i cried. Much later I would understand the crying. It sure didn't make it ant easier at the beginning! In my humble opinion, I think it would have been helpful for me if the depression and the problems with the emotions had been dealt with soon after the stroke? I don't know about you, but I wasn't one before the stroke to carry my emotions on my sleeve. I would have considered myself a withdrawn person? Well protected with walls around me. To go from this person to someone that couldn't stop blubbering like an idiot. I would think to myself as I had before the stroke, just get a hold of yourself? I was unable to "just get a hold of myself", I could no longer control the emotions. I would understand much later that my brain was traumatized, and I had to let it heal. I would realize much later that I could take Citalopram to take the edge off , and to control the winnie-cryinies. The whole point of all this being said is that I would not had to go through the embrassment of crying at the drop of the hat, if this had been dealt with earlier. The crying was not only an embrassment to me , but also to anyone speaking with me. I could tell they were uncomfortable with the situation, which brought futher embrassment for me. All I could do was pray that the mind games would come to an end?

New Road

I had been at Mama's for several months, and I was ready to go home! At the same time I was wondering could I make it on my own? Anna  would be at work during the day. Before I had left Mama's she had helped me get on disability. We had continued to work on me trying to be admitted to Tennessee Rehabilitation Center in Smyrna. I finally got called in for an interview. At the time I had to wait for a spot to come open in the TBI (traumatic brain injury) program. It would not be until February 2009 until they had an opening in the program. Mama had helped me as much as she could help me! It was time to see if I could do it on my own? It was now the end of September? With Mama's and Lisa's help I am now strong enough to go home! I don't know who was more glad for me to go home? Was it Mama and John or ME? I know they had to give up quite a bit for me to be there, and for that I will be forever grateful and thankful! But, I was ready to go home!  While I was at Mama's Rick and Jennifer built me a ramp to get in the house. I am on the road to home! I was soooooo glad to get home and feel at ease. I was glad to see my dog Jessie, I had not seen her since March! She has not left my side when I am at home. She is great company! Now is the time for me to make it on my own. I would get really frustrated about trying to do things around the house. I tried sweeping, but run over what ever I had swept up on the floor. I tried to vacuum with a small electric sweeper , but the cord would get caught around the wheels of my chair. Before the stroke I could sweep and mop the whole house in about 2 hours. Now it takes me about 2 hours just to dust and sweep one room. I had to make sure if I needed a can open for lunch, I had to get Anna to open it for me the night before. I haven't figured out how to get a can open yet? I have figured out how to get in and out of the shower by myself. I guess I will just have to have a "French" woman's underarm on the left arm? I haven't figured out how to shave under the left arm yet without help. I  have a stock of sissors all over the house.  They help to serve as my left hand when opening packages, boxes, and paper. I try to adjust each day to try something new around the house. I will continue on with life! Where does this fork in the road take me?  I can roll over and die? I choose to kick up my heels and say here I COME!!!

Time Marches On

It;s true, Time stands still for no one! I don't want this to sound like a pity party. I want to try to explain some of the emotions I felt after the stroke? I was very scared! I had lots of questions, but NO answers! I felt like I was alone? How was I going to take care of myself? How was I going to provide for myself? Would I ever make it back to the way I was before the stroke? How do I go about getting better? Would I ever be able to drive again? Would I ever be able to walk again? Would I ever be able to hug again?  Would I ever be able to work again? I felt that I must have been a bad person for this to happen? I was very mad! I had gone through some hard times in my life, but this was the grand moments of all. I had always some how made it through the rough times, but I didn't know if I could make it through this moment? At this time self-denial was my greatest friend.  I could not face the possibility that I would not return to "normal"! The thought was just too terrifying! All I could do was sit and cry for the death of me that I had been before March 27, 2008.  I wanted to scream  PLEASE HELP ME! But who would I scream it to? I wanted my independence back! I just wanted to be ME! I guess I was  the new ME? I felt if time had stood still? Life was continuing on around me, but I didn't know which way to go? I knew I had two choices to lay down and  die or get up off my tail and LIVE! I chose the to live route. Time wasn't going to wait for me , it continued to march on daily!

Where Did I Go?

I had tried so hard over the years to build my self confidence and to figure out "who I was"? Before the stroke I had that figured out and had the walls up to protect who I thought myself to be at the time. Well the stroke blew those walls away and left me bare! I lost my voice. I felt less than a person? I felt like I didn't deserve anything, that I shouldn't ask for anything. I felt if I wasn't contributing, then I should just try to be invisible. Yes I could speak, but I was afraid to speak for myself? When your lively-hood and life depends on someone else you tend to keep your mouth shut, even when you think something is unjust. Yes, I realize that my brain was healing ,but I felt that people thought I was stupid or something? I may have been a little scattered in my thinking , but there was nothing wrong with the perception part of my brain?  I still had feeling. I still knew when people were uncomfortable with the situation. I could still feel when I was not wanted somewhere. I could still feel when someone tried to belittle me in a "sly" way, trying to make it seem humorous? I did not find the humor in it , all I felt was pain and betrayal. I have a great sense of humor, but I don't find humor at someone's  pain funny? I find that to be a bully! Mama started helping me with trying to get help with disability and trying to get into TRC( Tennessee Rehabilitation Center) in Smyrna. Unless you are totally bedridden a lot of the programs out there will not help you. There is help out there you just have to dig for the help. If you are bedridden the Center for Aging and Disability is a good start.

Speed Bumps

  Have you ever been somewhere that you thought you might not feel like a stranger? I was going to my Mama's home. The home that I spent the majority my childhood.  I do appreciate Mama and John letting me come to there home to try and get better. The key words their home. I was the stranger. I hope the Lord sees fit to mever to put us in that situation again!   We started going to Vanderbilt Stallworth outpatient after I was released from inpatient. This was a whole new ballgame? They were nothing like the therapists I had for inpatient. To me they were a sadistic group of people. They were all just worrying about who had the brightest light? They did everything different than I had been doing upstairs? I'm not saying right or wrong but just painfully different. I have come to realize about therapists, is just like life it just depends on whom you are dealing with at the time. Some you click with and some you don't click with. For me the clickers I got the most benefit working with them. I don't remember the therapists names. The occupational therapist made a board out of some type of moulding material and would use scotch tape to tape my hand to the board. She would tape it so tight that by the end of the session the tape would be making a cut mark in my hand.  The whole time she was taping she was laughing about the pain? The physical therapists had a personality like a brick wall.  If you were walking with her and you made a move she didn't like she would give you a wedgie like you had never seen before, even though I wore a gait belt. A gait belt would go around your waist and a therapist would normally hold onto the belt to help when walking. To be fair and truthful I now realize they could have been the best in the world, but I still would not have liked them because they were not Joy and Kelly. Change is hard!!

Long and Winding Road

  As I started on the road to recovery there was not a map. The only thing I had were 4 destinations, speech, left arm and hand, left leg, and brain. The destination for speech was to be understood and not sound like Forrest Gump! To my ears that is what I sounded like when I heard myself speak. I guess I should have been glad that I could speak at all! My grandfather had a stroke. I know Papa had to be extremely frustrated? His stroke took his speech from him. Mama explained to me that back when Papa had his stroke they didn't have the therapy they have now. Papa was just sent home to deal with it the best he could? He did a great job with what he had to work with at the time. If only I knew then what I know now? The destination for the arm and hand was to get use of it again.  The destination for the leg was to walk again without a cane and not use a wheelchair. The destination for the brain was just to be able to think "reasonably" again. OK, start your engines! Here we go on the journey. While staying at Mama's we worked alot on trying to get the brain organized again? I would try to read and figure out something and my brain would give out and shut down on me? I would get sooooo tired and sleepy that I just had to stop and rest! Even today I still have some of the same problems. Worse than the brain getting tired was my problem with organizing thoughts. Like if I was trying to tell you a recipe I would think in my head how to do the recipe, but by the time I was trying to speak what I was thinking it would not come out like I had put it together in my brain?  Things that used to be so easy.

Sense of Independnce Lost

 It was time to leave, but I was really scared! For two or three days before I was suppose to leave all I did just about was cry? I was crying because of the unknown. I was crying because I was leaving. I was crying at times and couldn't tell you why? I was crying because I wanted to go home and not go to Mama's. Realistically I knew I couldn't make it by myself at home, but that didn't mean my heart and desire didn't want to be at home. In some of my thoughts I could make it at home? Looking back now I realize that I could not have made it at home by myself! I was no where near to the point I needed to be mentally. I could not reign my thoughts in to make sound decisions. I was still too impulsive! I have always been a pretty outspoken person. But I realized at this time I was having a problem with it. Trying to have a conversation was difficult because if I didn't say what I was thinking in the middle of the conversation I would be lost in the conversation. When trying to do something I felt I had to do it at that moment or the thoughts would be lost for me. For a brain racing so fast, I realize now there where a lot of miss-fires going on in my brain. Parts of my brain were dead or needed to heal. Parts had to be retrained.

 The day I was suppose to leave in-patient rehab at Stall worth was a very difficult day! I had cried until I didn't think I could cry any more. I guess I should have been happy that I had progressed enough to leave? I was leaving what had become "normal" for me. Would I be able to manage at Mama's without putting too much on Mama and John? I was going to the place I had grown up in as a child, but it was no longer home. Home to me is a place you feel like you belong and are loved. I was a fish out of water. I will be forever grateful and thankful that Mama and John were able to take me in at the time of my release from Stall worth! They were able to take me to outpatient therapy at Stall worth. Mama helped me a lot with thought processes. I don't really know how to explain how my mind was messed up except to maybe compare it to when something really dramatic happens in your life and at the time you just can't get your thoughts together. Thank you Mama and John  for helping me began the road back. Thank you Lisa for the exercise and encouragement. Thank all of you for not letting me give up! I felt I was a burden, because I was a burden.  I apologize that I caused everybody to change their daily routines. I am very appreciative of all the help and love given! I was in a house full of people, but I was very lonely and scared? I couldn't talk to anyone about what I was feeling, because  I would just start crying and that was uncomfortable for me and them.

Talk of Leaving?

 I realized that I couldn't stay at Stall worth forever? I was excited about leaving, but at the same time scared to death! I could now get in and out of the bed myself! Yes, this was a big thing! Because I had come from wallowing round like a beached whale   to being able to get up and down! Mind you slowly, but was able to manage it! I was still having problems with the whinie-crynies! I would just start crying for no apparent reason? I would understand this much later!  There is goodness in the corporate world! At the time of the stroke I had worked my last day at Pathologist Laboratory the day before the stroke.  They covered me with insurance until January of the next year. They are a great group of caring people! Thank y'all so much for the prayers, visits, and thoughts. Back to the thought of going home?  I didn't know if I was ready?
     But of course, it doesn't matter your thoughts. The insurance company decides when it is time for you to leave. Dr. O'Duffy and the therapists team all agreed that I  was to the point I could go home with out-patient theraphy? Now the big question could I go home? In my mixed up confused state I thought I could go home and take care of myself? I now know it was my brain messing with me! Because at the time I was starting to realize that I was not thinking the smartest at all times. One evening there was something on my table and I was trying to decide if I could reach it with my foot? You would be surprised what I can pick up with my toes! In the end I decided if I tried to get it from the table I would be in the floor.

Joy Ride

One day in therapy Joy and Kelly ask me if I  would be interested on going on a field trip? I had only been outside a couple of times to the "garden" area. They thought I could handle my wheelchair well enough to get there and back. A chance to eat something besides hospital mush was a blessing. I had on occasion had a chance to eat something different. Mama had brought some plates down. I have always enjoyed Mama's cooking! Brian and Anna took me across the street to go to Taco Bell.  I thought yeah I want to jump all over this opportunity! We were going to the Pancake Pantry! I had never been there before, but that didn't matter it was a way out to get some food. I thought they were going to load us on a bus to take us there? But the day of our joy ride was in wheelchairs. By this time I could get some around pretty fast in the wheelchair. We got out on that sidewalk and I was gone I was flying it seemed like!  I was enjoying being outside! I was enjoying the freedom! We finally made it to Pancake Pantry. I didn't realize they could make pancakes in so many different ways!  I chose the sweet potato pancakes. They were delicious with the sugar-free caramel syrup they had. I was in hog heaven! I had promised I would be on my best behavior for this trip! I only pulled my chap stick , mirror, and change purse out of my "pocket"! Of course I needed the chap sick to protect my lips from the wind on the way back! I needed to pay for my meal. I needed the mirror to make sure I didn't have food on my face as I was still unable to feel on the left side of my face.