Coming Clean About My Stroke-Part6

So, I’m finally back after taking a brief two-week hiatus. I apologize for that. I’ve done most of my catching-up, but not all. I will catch up by the end of the week. It is now time for me to continue to the last few parts of my Series posts. There should be no more than three or four after this that will bring you to up to speed about how I’m doing physically, medically, emotionally and psychologically in my life today.


The days after Christmas flew by. I was doing extremely well and, as I mentioned in Part 5, I graduated from the ‘Buzz-master’, as it affectionately came to be called. I was walking around more confidently with my walker, maneuvering the corridors like a pro. I did well on shower days and was able to wash myself with little to no assistance (of course, sitting on the shower chair). The only problem with shower days was the excruciating pain when the water hit any part of my left side. It was like fire. I was on Neurontin at the time because the doctor said it would help my ‘nerve pain’. I would take it at night before bed. At first it knocked me out. That’s about it. More on that another time.

I continued to kick butt in all my therapies. The therapists even went so far as to order my home supplies (port-o-potty-for those “I don’t think I can make it moments” (yeah, I know), shower chair, my very own walker). This development, of course, gave me hope that I would be going home in time for New Year’s, which was only a few days away. The doctor had a meeting with my case worker, my nurses, and all my therapists, and they all felt that even though I was progressing extremely quickly and doing very well, they were not comfortable enough with me going home in time for New Year’s. They all felt I needed a little more inpatient rehab time. I was upset, but not hysterically so. While I wanted to go home, I knew I still had work to do, so I didn’t fight it. I kept doing what I had to do; since the house I live in has a few stairs, that’s one thing I always did in PT, up and down the stairs.

Same in OT.  I did a great job overall, especially when it came to anything having to do with daily living – hair, teeth, shower, etc. Getting dressed wasn’t too bad as long as I wore big shirts (couldn’t lift left arm, compromise)  and tanks instead of bras (same). I could put on loose-fitting socks and pants, but I’d have to be sitting  in bed for socks and lying down for pants. It was a lot of work. I had the most trouble with the little things, buttoning small buttons, fishing out little items from the putty ball with my left hand, things like that. Although they gave me some trouble, I was able to take some of the items they gave me and work on them in my room and on my bed.

I know my precious Lhasa Apso Sophie came to visit me between Christmas and New Year’s. I love that hairy little thing so much! I don’t know what I’d do without her. She came one of the family visits. The rehab hospital allowed it every so often.

ST was giving me the most trouble. It wasn’t that I couldn’t communicate; for the most part, I could be understood clearly. My problem was my inability to find my words, to pull them out of my brain when I needed them. The problem was my inability to have simple conversations where there is a ‘change’ or a ‘conflict’ of some sort. It’s almost like in the books and stories we write. Once the ‘conflict’ came in, I couldn’t handle it. I couldn’t focus, would become extremely flustered, would stutter so bad that you couldn’t understand what I was saying and would get to the point of frustration that I would burst into tears and shut down. Yup, I was going to need some work.

New Year’s Eve came and after a couple of morning therapies, the rest of the day was mine. Everyone I knew was working. I spoke to my daughter, my son-in-law and some close friends. I read a little, watched some TV, and practiced make-believe checkbook balancing and math problems. Then I watched some more TV. I think there were even some marathons going. I know I probably watched.  It had already been decided that everyone was going to do their own thing for New Year’s 2012, whether it was work, party, stay home or whatever.  I figured I was just going to watch TV and the countdown like I did when I was a kid. I didn’t even make it to the ball drop.

All of a sudden, it’s morning, it’s a new year, and I made it! Sweet. It’s a holiday and I’ve got the day all to myself and I plan; I plan for all the changes I’m going to make in 2012 and beyond. Why? Because I’m still alive. It’s now 2012 and by the grace of God, I’m still here. So, obviously, I have things to do…right?

I’m sorry Part 6 took me so long to get out to you, so I’ve already started on Part 7. Until next post, love you guys. And yes, I have a couple of between posts due; nothing like playing catchup is there? Hugs.

Coming Clean About My Stroke-Part5


After the entire fall incident, things began to fall into place. I had a routine to follow, which was important for me then. I had Physical Therapy (PT) and Occupational Therapy (OT) four times a week, Speech Therapy (ST) three times a week and Recreational Therapy (RT) twice a week. I did exceptionally well in PT. By my third day, I was able to stand between the parallel bars and walk half way across and back. My left foot dragged a bit, but at least I could get her to move. I kept forgetting about my left arm and she kept hanging back. My PT would tap me and remind me to ‘bring her along’.  My right arm would dutifully come around and drag my left arm forward to bring her up to speed.

My speech also improved, although it was still my most frustrating therapy. The inability to find my words, my constant stuttering, the feeling of being overwhelmed, and the inclination to cry when asked simple questions began to slowly diminish. I didn’t notice it until a few sessions in, when my ST pointed out that I had answered a question and did not cry; or I did such and such exercise without a hint of a stutter. It was a hell of a breakthrough for me; at least I knew people were understanding what I was saying to them.

Same thing in OT. We worked a lot on ‘daily living’ things: folding clothes, zipping zippers, buttoning buttons, etc. This was in addition to dressing, washing, brushing hair and teeth. They always focused on working my left hand and arm because that’s where my deficit is.

One thing I was notorious for, was clutching utensils in my left hand (or any other item–pens, pencils, mini-lotion bottles, etc) without even realizing it. Some days coming back from meals,  aides or therapists would notice and have to take it out of my hand with a bit of force. I was just unable to let go, even though I willed my hand to. The staff caught on quick though. Every night before I went to bed, my assigned aide would go through my bed. Sure enough, by the time she was done, she had a handful of spoons, forks, straws, body lotion, and rolled up paper in her hand.  🙂

It was a lot of work, but I progressed nicely. I always looked forward to RT. I was always allowed to choose what we were going to work on. Since I wanted badly to be ‘normal’ again, I would pick games that required thinking skills like Scrabble, which I used to be really good at. Of all the times we played, I may have won one game; but it was a sweet victory. It was near the end of my stay.

In my down time I used to watch TV or read magazine that visitors bought me while I was in the hospital. Christmas was only days away, so I had visitors come see me while I was in rehab too. It was nice having the people I love and care about around me. A neighborhood family volunteers every year at the rehab center to sing holiday carols and popular songs in the lobby on Christmas Eve. I advised the floor nurse that I’d wanted to go, so when they were ready to start, a volunteer came up and wheeled me down to the lobby. It was a girl, her father and her grandfather. Three generations with their own little band. They played everything from Silent Night to Bad, Bad Leroy Brown. It was amazing.

My family came on Christmas Day to see me and visiting hour rules were ‘ignored’ by the staff on my floor. I was grateful for that. As much as the staff tried to bring holiday cheer to us, it just wasn’t the same. It just made me itch to want to go home even more. Every time the doctor came by, I asked him how long it would be before he thought I’d be ready to go home and do my PT, OT and ST on an outpatient basis.  His answer was always, ‘Let’s give it a few more days’. I hated that answer.

Over the next few days, I busted my butt and worked really hard on my PT. I had graduated from using the wheelchair all the time to using the walker from my room to the lunch area or PT/OT, which were right down the hall. (I still had to sit in my wheelchair for further distances, like ST). I would be out of inpatient rehab as soon as humanly possible.

If I couldn’t do it for New Year’s, well then as soon after as I could,

That’s all I’ve got for this Part, I should have Part 6 up some time next week,

Until then, love you guys!

Coming Clean About My Stroke-Part4

So, it was time to say goodbye to the hospital and hello to rehab. I was nervous and really excited. Excited simply because I actually made it out of the hospital. It was going to be an awkward trip for me. That I knew. I was all bundled up in bed with my bags on a chair next to my bed. I was waiting for the ambulance that was going to be transporting me from the hospital to the rehabilitation center. What was I going to do? Or say? These were my people. I may not know them, but it hurt my heart knowing that they were coming to get me; doing what I should


be doing for someone else. I want to say they arrived about lunch time. I’m not exactly sure. They were professional and polite. It was a male and a female. That I remember. I couldn’t aid them in any way since my left side was useless and my speech was poor, so I sat there and smiled a crooked post stroke smile.

They put me on the stretcher and my belongings placed on top of me. Off we went. I was in the back with the female EMT and the male drove. She introduced herself to me as she was going through my file and started writing her report. As she went through my file, she noticed my occupation. “Oh wow. You’re an EMT too. What happened, if you don’t mind me asking?”  I did my best to let her know it was OK and began to explain what happened. She listened intently and never made me feel bad for struggling with my speech. She told me more than once that it was OK and she understood what I was trying to tell her. I still became so frustrated, that I couldn’t help but shed a few tears on the way.

I wish I could remember her name, but unfortunately I can’t. I saw her a few times during my stay at the rehab hospital. She made it a point, she eventually told me, to jump the job when she could to take me to my plasmapheresis appointments when she could. That made me feel good.

So we finally get to the rehab hospital. I’m taken to the brain injury unit and not the stroke unit. I guess because of the type of stroke; I don’t know. . . I’m greeted by the nurse and my case worker is there also. I’m taken to my assigned room and gently placed in a wheelchair by my new-found EMT friends. 🙂 I haven’t met my roommate yet because it is, in fact, lunchtime. While my paperwork was sorted out, I’m taken three doors down to the little dining area and served lunch. My first day was uneventful. I met my roommate later that evening. The damage from her bleed was worse than mine. She was a very nice, heavyset lady who couldn’t remember anything. She was a good twenty-five years older than me. Her brain injury was the result of a severe car accident. She was funny though. That I do remember.

The second day was not so great. It started out well enough. It had only been a few days since the Foley was removed, my muscles weren’t strong enough to keep me continent through the night. In that respect, I was like a child again and needed to be “changed”. Humiliating is an understatement when trying to explain how I felt. All I could do was apologize. All the reassurances didn’t make me feel better at all. Professionally, I know it’s natural for accidents to happen after a patient has been with a Foley for so long. God Bless them for trying to make me feel comfortable though!

I needed help from my bed to the wheelchair and could not go to the bathroom without assistance. That, I was OK with because I knew I couldn’t stand and turn by myself. Baby steps. I had my first Occupational Therapy session that morning and it consisted of learning how to wash my face, brush my teeth and hair, and attempting to get dressed (with her help, of course). That took my whole hour. Then came breakfast. Next was Physical Therapy. That wasn’t too bad either. I did most of my exercises in my wheelchair. After PT I was wheeled back to my room and helped into bed. I had lunch delivered to my room so I could watch TV. My Social Worker comes in soon after. She takes a seat next to me and has a stack of reading material in a binder that she went over with me briefly. She tells me I’ll probably be interested in reading it when I have some free time. It had information on stroke survivor support services, exercises, resources, articles and a ton of other information. I told her I would read it after I finished Speech Therapy, which I had after lunch.

So far so good, right?

So, the staff brings me my lunch and I enjoy it while watching whatever show it is on TV. When I’m done, the Speech Therapist comes to pick me up for my first Speech Therapy session. This session only lasted a half hour and it felt like an eternity. I was so flustered and confused from the start. I stuttered, stammered, and struggled to find the words I was looking for when she asked me questions. We tried to do a few simple exercises. I was able to complete some, but not all. The therapist said I did fine considering it was our first session. She gave me some ‘homework’, and we would go over it the next day. When the session was over, she wheeled me back to my room and asked if I wanted to go back to my bed. I told her no, that I wanted to read the binder that my Social Worker had given me. She said OK and left.

I took the binder off the tray table where I left it and opened it on my lap. The next thing I know, a bunch of brochures and papers fall out of the binder and onto the floor. I close the binder and figure I’ll just bend over and pick the papers up. As I lean forward and reach for the papers, my wheelchair topples over and I go with it, cracking my head on the floor as it goes. I’m so stunned, I don’t know what to do. I want to get up on my own, because I’m just a stubborn ass sometimes. I’m laying in a ball underneath my wheelchair demanding my body to move, to get the hell up, to DO SOMETHING! And she tried, she did. With everything I had in me, I tried to move the wheelchair and roll myself over, but I couldn’t do it. Defeat. I refused to call out for help. I stayed, curled up in that ball, amid all those papers with tears streaming down my face, not uttering a sound. I just kept praying that if I calmed down a little bit more and focused harder, I would be able to drag myself to the bed and up eventually. I don’t even know how long I was down before the nurse happened to pass by the room and notice me down and called whatever the code word is for a person on the ground, maybe twenty minutes or half hour. Next thing I know, there are three people in my room, lifting me up off the floor, checking to see if I’m OK and putting me back in bed.

The doctor had to come check me because I had a nice sized hematoma on my forehead. My family had to be called because that’s the facility protocol. From that moment on, for the next week or so, I was on protective ‘lock down’. My wheelchair and bed were fitted with a device that would sound an alarm when it sensed that I was trying to get up. Really?!? Talk about punishment.

That was the second most depressing day I had while at inpatient rehab. I think about how helpless I felt that day and know that I’ve come a long, long way.

That’s it for this week’s post. I hope to have Part 5 up by next week some time. As always, love you guys!

Coming Clean About My Stroke-Part3

Good evening to all my blog family! Sorry it’s taken me a bit to complete Part 3 of the Series. Last week was the week for me. I had a post due for the Insecure Writer’s Support Group on Wednesday. That had to be kept short and very sweet (and a little late) because I arrived in NJ to attend the wedding of a friend and wound up having a focal seizure while attempting to purchase a dress at the mall.  😦 Anyhoo, what matters is that I made it to the wedding and I will post a few of my ‘sexy mama’ pix in a future post.

Back to the hospital. . .

The neurosurgeon and neurologist are getting ready to clear me from NICU and transfer me to a regular floor until a bed is available at the inpatient rehabilitation hospital. Physical and speech therapists still come by regularly to work with me. At this point, I am able to stand with assistance.  The day before my move to a regular room, I take my first steps with the help of a physical therapist on each side of me (a friend actually took video). As much as I would have loved to include them in my photo, I haven’t been back to see them in some time, and have not gotten permission yet. It was a big day. All of my bears and balloons were packed and taken away that night (except for a small Eeyore I kept with me) since I would be going to a small semi-private room in the morning.

My very first steps. . .After one month in NICU. The beginning of a very long and arduous journey towards recovery.

My very first steps. . .After one month in NICU. The beginning of a very long and arduous journey towards recovery.

The following morning, I was wheeled up to my new room; which was TINY compared to my suite in NICU. I did have a roommate though. She was about 15 years older than me and was friendly towards me. She did tattle on me though…

My daughter and son-in-law came to visit me my first day on the regular floor. Me, being the stubborn, hard-headed person that I can sometimes be, decided I would go to the bathroom with help from my daughter and son-in-law. (Oh, did I forget to mention that I only had my Foley catheter removed two days earlier and was supposed to use a bedpan??) As much as they tried to dissuade me, I won. I felt that with their assistance, I would be able to drag the left side of my body across to the bathroom. I didn’t make it halfway across before I became so winded and exhausted that I couldn’t move anymore. Because of all the lines in me, my son-in-law was afraid to try carrying me back to the bed, so my roommate rang for the nurse. It happened to be a male nurse. As wonderful as he was, he proceeded to verbally pow pow me about attempting to leave the bed without proper supervision. Between him and my son-in-law, back into bed I went and out came the damn bedpan.  😦

My two favorite physical therapists came back later in the afternoon for a session. We talked about the morning fiasco; word sure did get around! I worked my butt off that afternoon and made it about 20 steps round trip that day with one stop to sit in a chair. I had another plasmapheresis treatment and some more visitors. I know I slept a bit because every time I woke up, someone new was sitting in my room. I also had another session with a Speech Therapist. I know I had some while I was in NICU (besides having to pass the swallow test), I just can’t remember them. It was extremely frustrating. By the time she left my room, I was in tears. I knew there were going to be a lot more days like that ahead of me.

My last day at the hospital was basically the same; meals, physical, speech therapies and my meds. More visitors came by. Of course, no more trying to get out of bed for me.  All my things were packed and ready to go. My case worker came by to speak to me about the rehabilitation hospital I would be transferred to the next day. I signed some paperwork, as did my daughter and that was it. By the end of the day, I was exhausted.

December 19 or 20, I think it was, would be the start of my new adventure at the inpatient Rehabilitation hospital. I’ll explain as much as I can remember about the journey from the hospital to rehab and my first days there in Part 4 of the Series. I hope to have that post up by next week.

As I got further along in recovery, I remembered more things; fascinating stuff, this brain we have. As I move along in my journey, you’ll find that I will get more in-depth with what’s going on around me, details that I remember, my feelings, my frustrations, my willpower, and sometimes lack of.

I hope you guys stick with me while I finish flushing my system of all that I’ve pent-up for so long. I already know those who definitely will and I love you so much more for it. 🙂

Until next post.

My First Post for The Insecure Writer’s Support Group

Hi, my name is Lily, and I am an extremely insecure writer…

Um, so I should mention that I recently joined what I hear is an awesome writing group called ‘The Insecure Writer’s Support Group’ founded by the wonderful Alex J. Cavanaugh. The Group meets the first Wednesday of every month. If you’re interested in joining, just click on the image below and the image will direct you to Alex’s page to sign up.
Click Here to Join!I need to get a bit of history out-of-the-way so we can focus on my insecurities as a writer aspect of my post. 🙂 Most, if not all of my followers know that I suffered a stroke in November of 2011.  Mine was hemorrhagic in nature; meaning that I ruptured an aneurysm in my brain, causing the excess blood to cause damage to my nerves and tissue. Because of the sudden onset of this type of stroke, mortality rates are usually very high. Fortunately for me, I survived and made tremendous strides in my recovery.

Some of the residual problems (as it pertains to my writing) I still face from time to time are problems with my short-term memory, inability to focus for long periods, finding myself unable to find the right words (even though they are right at the tip of my tongue), and general feelings of frustration and being overwhelmed.

I have read posts by other stroke survivors who I have come to admire for the way they write and how easily their words seem to flow. Towards the end of my speech therapy, my therapist said that I was performing at the highest level possible. I will admit that I still need to practice every so often because when I find myself becoming overwhelmed or flustered, I tend to stutter slightly and find myself unable to find my words.

I think I have become so afraid of failing because of everything that has happened, that I haven’t finished any of my projects. I have several in the works. I even signed up for NaNoWriMo in April. Came close to finishing my word count. Didn’t quite make it. I was practicing for November’s big event. I am full of ideas; they usually come from the weirdest places… My imagination runs wild. It always has. That’s why I’ve loved writing since I was a little girl. It’s why I started this blog; to get out there and fulfill my dream. Whatever it takes, I will do this and so many people have helped me get out of my shell little by little. I need to build up the confidence to finish my projects and hopefully get some good stories out there.

I do a lot of reading on the subject of writing as well and am aware of what writers go through. I understand all about the writer’s block, the stories laying dormant in drawers (or computers in my case) for months or years at a time, and the fear of rejection and ridicule. It’s what I go through all the time.

So, I guess what I’m asking is, am I more irrational than most? Do you think my problems are due to whatever residual effects I had from the stroke or is this what most of you have gone through as writers?  I really don’t know. I haven’t personally met any writers to ask. Please be honest. I don’t offend easily as long as you’re not malicious, rude or crude! Lol.

Thank you all for listening and again, my name is Lily and I am an extremely insecure writer…