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.

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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.

Related articles

• Coming Clean About My Stroke-Part5 (lilicasplace.com)
• Coming Clean About My Stroke-Part4 (lilicasplace.com)

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

(c)LEBlake

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!

Related articles

• Why Are Stroke Rates Rising in Young People? (everydayhealth.com)
• Magnetic Brain Stimulation Boosts Speech Therapy Effectiveness (hosthealthcare.com)

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.

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.

Related articles

• Occupational Therapy: Get Back to Life After Stroke (everydayhealth.com)
• Physical Therapy After a Stroke (everydayhealth.com)

Coming Clean About My Stroke-Part 2

I finally stabilized enough that I was extubated for the last time, the first week of December. I’m in a private NICU room with doctors, nurses, therapists galore, family and my ex. I’m up, but don’t really understand what’s going on.

I remember one of the nurses asked me if there is something I needed, and I remember responding with a voice that was unrecognizable to me, “McDonald’s McNuggets and Sweet Tea”. I was speaking as if I had a small bag of rocks in my mouth. This was moments after being extubated (none of that I remember). They found the request amusing,  but I didn’t. I was hungry.  I was told I wouldn’t be able to eat any hard food until the speech therapist tested my swallow skills. I had just been extubated. I was looking at juice, apple sauce and jello. Whatever.

I remember my attention turning elsewhere.  I tried getting out of bed. I told my body to get up, swing off the bed, and stand. My entire left side betrayed me. She just lay there and wouldn’t move. My brain asked, begged, yelled and screamed; but my left side, particularly my leg — wouldn’t budge.

I remember just staring up at everyone in the room, trying to formulate my thoughts and figure out what was going on. One of the doctors explained what happened and what I had undergone. He began to test my physical and cognitive function. My coördination was pretty bad. My brain couldn’t figure out which way was what. I was confused about how to place my finger to touch his nose.  When he would ask me to lift a particular leg a certain way, I would do the opposite. I was given three simple words to remember and would be asked to recall them in one minutes time.  He checked my heart, lungs, and pupils. Asked if I was in any pain. I said No. He asked me to repeat the three words. I couldn’t remember a single one.

He explained the “residual effects” of the stroke on my body. This included the aphasia, left-sided weakness, the memory loss, difficulty in finding my words, slurring of my speech, coördination issues and emotional turmoil.

If you go by my memory, I can tell you I was in the hospital for all maybe a week. The truth of the matter is, I was in NICU for a month. All I can remember are fragments. I suppose I’ve put all these fragments together in my mind and made one big memory. I don’t know.

Slipper Socks on my hands to keep me from taking the stitches out of my head! (But at least I was extubated for good at this point!)

But I do know it wasn’t fun. I had to have slipper socks tied to my hands to keep me from trying to scratch the stitches out of my head.

I distinctly remember people at various times brushing my hair. I don’t know who it was. Several of my female friends came to visit and took time to brush out my hair since it was so long. The neurosurgeon made the incision along my natural part, so he didn’t have to remove that much hair; but it was still a mess. My friends did their best to try saving it.  :’-)

I had another port inserted on the left side of my chest for the TTP treatment. Plasmapheresis was what my treatment was called. I had it at least 3-4 times a week while in NICU. 10-12 bags of donor plasma is infused into my body (via some dialysis type looking machine) and my ‘bad plasma’ is removed and discarded. The entire process takes about three hours, including patient, blood type check, etc. No fun.

I was taken down for CT scan about 430am almost every other morning. I’m sure I slept through most of it.

Being that I couldn’t move on my own, near the end of my stay in NICU, physical therapy came around. They were wonderful ladies. Since I wanted very much to be able to sit in a chair and maybe read a book or magazine, I thought physical therapy was the answer. It sure was. I couldn’t even walk with help. In order for the team to get me into the lounge chair, I had to be hooked up to this hammock looking contraption that basically picks me up off the bed and the team maneuvers it to the chair.  From there, they adjust me, and undo all the doohickeys. Definitely no bueno.

After nearly a month, I’ll be released from NICU to a regular room, where I spend the next two days before my next adventure at the Inpatient Rehabilitation Hospital.  Yup, I remember more from there. . .

Stay tuned for Part 3, which I will probably post next week because I have my Insecure Writer’s Support Group coming up this week also.

Thanks again for always being here for me. . .   🙂

Love you guys!!!

Related articles

• Intracranial & Subarachnoid Hemorrhage (marylandccproject.org)
• Types of Strokes – Hemorrhagic and Ischemic (everydayhealth.com)

Coming Clean About My Stroke-Part1

Physical therapy had gone well for my knee, back and hand. I had lived with some friends in NJ since I had separated from my partner in August. I would get picked up on weekends to come back to PA. We would talk about the problems that led to our separation and if there was any possibility of reconciliation. It didn’t really look that way to me, but we continued to talk about it and I continued spending my weekends in PA, from Friday to Sunday.

NOVEMBER 20, 2011

We had just gotten to PA from NJ. I had promised one of my roommates that I would finish the first draft of his term paper on Assisted Suicide for one of his classes. 😦 My ex was in the family room downstairs watching a football game. It must have been about 9pm or so. At some point, I had to go to the bathroom, so I went upstairs. I got up and felt a tremendous heat from the back of my right foot that rose up my body. Then it was like a rubber band snapped the back of my neck. It was the worst pain I had ever felt; yet it only lasted about 30 seconds. Immediately after, I had the worst wave of nausea hit me. I knew that something was terribly wrong, but I didn’t know what. I called out my ex’s name but didn’t get a response until the fourth time I called. At that point, I was practically screaming.

We both worked EMS and as soon as my ex came upstairs, I said I needed to go to the hospital. I don’t usually go to the hospital for anything. I hate hospitals. All I had to say was something is NOT RIGHT and we NEED TO GO NOW. That was all it took. I was in pajamas. I put on my sneakers with help. I could barely walk by myself. My ex got me to the car and helped me into the passenger side, and left. The last thing I remember after leaving the house was reciting the Lord’s Prayer over and over again. We weren’t half way to the hospital before I began to seize in the car and vomit myself. (I was given this information long after my return home from rehab.) My ex considered pulling over to call an ambulance, but knew it would be quicker to haul ass in the car.

I do have some vague memories at the Emergency Department; of being wheeled into the CT room, looking at my left arm jerking uncontrollably and wondering what was going on, doctors and nurses buzzing around me, but not quite comprehending what they were saying to me, hearing a loud whirring noise, feeling huge, heavy headphones on my ears and a flight medic telling me that everything was alright. That was it.

# # # # # # # # # # # # # # # # # #

The CT scan showed an extensive bilateral sub-arachnoid hemorrhage. I was flown by Medivac that night to the nearest Level I Trauma Center because my hospital was not equipped to care for me. In the early morning hours of November 22, I underwent a right frontal craniotomy for the clipping of a pericallosal anterior cerebral aneurysm rupture. I had been re-intubated later in the week secondary to post surgery seizures.

Sometime after surgery, a Hematologist was brought in to check my blood work because some numbers were off. I was diagnosed with an idiopathic case of Thrombotic Thrombocytopenic Purpura (TTP), which is a rare blood disorder that causes blood clots to form in the small blood vessels around the body, and leads to a low platelet count (thrombocytopenia). I’d never had any hematological issues in the past, that’s why it is classified as idiopathic in nature (arising spontaneously or from an obscure or unknown cause). I’ll explain more about treatment I underwent in one of the later posts.

The first week and a half after surgery was “wait and see” because there were so many complications. More than once staff had to stop visitation for everyone except immediate family. It was at this point my (full-time) supervisors had a meeting about what to do if the worst case scenario were to play out. . .I died. I worked for the City; even though it is a small one, the EMS agency I worked for (and technically, still do) was close and tight-knit. The EMTs wouldn’t have worked if one of their own had “fallen”. They were figuring out who they would ask to cover the City for my funeral if it were to happen. To this day, I still find myself having difficulty wrapping my brain around how close I came to not being anymore.  Even though I still have bad days when the pain is really bad or I feel depressed because my focus is worse than usual, I know I’m still luckier than a lot of others. The smell of fresh rain, Sophie’s kisses on my cheeks, and the fact that I can still hug my family and friends is a constant reminder to me. I thank and love the Powers that Be (God) always for my second chance at Life.

I went off on a bit of a tangent there, sorry. . .

I will continue with Part 2 in the next few days. I need a breather. Seriously.

Love you guys.