All-day Drowsiness - Scar-tissue - Sleep Study

I don't know if any of my family and/or friends read this/my blog so I'm not sure if I will continue  with it or not but since it's been awhile since my last post, here's a bit of an update...Regarding the fatigue in my earlier posts,  in actuality, it's not fatigue, it's all day drowsiness.  Today I was awake at 6 AM and up and dressed and had breakfast (which included coffee) by 8:30 AM.  By 9:30 AM, I was so drowsy-sleepy that I headed back to bed for a nap.  I slept for 4 hours (10 AM to 2 PM - awakened by my alarm to take my afternoon medications).  I wanted to go back to sleep (I feel the desire to sleep forever, literally) and tried for another couple of hours without success :-(  It's now 5:30 PM  and I'm starting to drowse again. ------- All very boring, huh?

I got to tell you, I think I now understand, why Michael Jackson purportedly begged his doctor for 'propofal' to help him to sleep.  I've had 'propofal' for surgical anesthesia and it does induce a good sleep; which sounds good to me right about now!

I met with a sleep specialist in November and and he gave me some interesting information...I had an MRI of my brain done this past July and it shows there's scar tissue forming at the location of the stroke I had in 2013.  It just so happens to be in the part of the brain that controls one's sleep/wake cycle.  The doctor said that the scar tissue can cause tugging on the healthy tissue surrounding it which could be the cause of the seizure I had in August, as well as possibly causing a form of narcolepsy.  I'll be having a 2-day sleep study next week for them to get a better look at what might be happening.  I just want to sleep, so this is OK with me!

Getting Control of My Fatigue?

Just adding to my post yesterday.  Although I'm really tired now, after being awake for 3.5 hours, This morning was the first in a very long time that I initially awoke feeling like I had enough sleep......Maybe there's hope that the increased  med. dose may help.   Fingers crossed (on my unaffected side).

No More Seizures but still Quite Fatigued

After having someone say they were worried about me and wondered if I was OK since my last post, I figured it was well past time to post an update.

Sorry for the big gap between posts; I've had no luck using speech recognition software and I'm still battling with chronic fatigue so I avoid typing because the one-handed style frustrates me and tires me more.

Anyway, After having the seizure mentioned in my last post, I was prescribed an anti-convulsant medication; I've, thankfully, not had another seizure.  I had an EEG done and was told it showed "brain activity as is typical post-stroke", whatever that means.

As for my fatigue, in an attempt to fix it, as of yesterday, my anti-depression medication dose has been increased (but that takes a couple of weeks to take affect), then in November I meet with a sleep consultant to maybe set-up a sleep study.

I hope something helps soon; I'm so very tired of being tired!

Bad Day for Me, Yesterday...Oh No, What's next?!

On Saturday, the 16th I had a really enjoyable day outside attending a friend's birthday party but the good day was, unfortunately, followed by a bad day yesterday (Sunday, August 17th)... I spent 4 hours at the hospital ER. I had got out of bed in the AM , hubby did not and my son was on another level of the house.  After using the bathroom, I went to the kitchen to fix my breakfast as I do every morning; I began by retrieving my teacup from the table and then taking it to the counter where we keep our pitcher of filtered water (with the intent to fill the cup with water to heat in the microwave to make instant oatmeal.  I never made it to the counter because I became quite dizzy, lost my balance and fell to the floor, hitting my head twice on the way down (on the counter and on the trash bin) I remember then hearing the sound of my son running up the stairs and my hubby call out my name and leaping from bed and running to me.  When hubby got to me, I heard him say to our son, "she's having a seizure, call 911".  I remember nothing from that point until I got to the ER.

I tell ya, looking back over my life, it seems it's solely made up of drama and trauma.  What I wouldn't give for a piece of peace and comfort.

Gosh, I wonder what's next on my horizon.  My neurologist is away until after Labor Day  so now I wait to hear from my PCP on what I do next.

Cooking - A Love turned to Hate

A couple of months back I blogged about being beyond happy to have been able to cook for my family again.
Sadly, that has recently changed for me.  I used to love cooking for family and friends and myself, now I HATE it!
I loved it when it was easy.  Now, with only one functioning hand and arm, it's very difficult and completely frustrating.
I tried making a Caprese salad for dinner the other night while my men-folk were outside grilling burgers and zucchini but was having so much difficulty that I abandoned the whole thing.  I have a one-handed cutting board, which does help some but my knives are in serious need of sharpening;I practically pulverized the tomatoes, and although the mozzarella was pre-cut, I couldn't get it out of the plastic wrapping, I succeeded only at piercing it and making a large puddle of milky-whey.  Cutting the basil was impossible with my dull knife.  :-(  I'm still sad about it.

My family and I have always enjoyed having dinner out but now we eat at restaurants so often  that one particular place knows us by name and brings us our drinks before we order them (since we're consistent with our choices, they can do that)!

I wish there was some sort of miracle fix available to help me regain the use of my arm; I miss it so very much!

Sorry for the downer of a blog post but this is where I am right now.

Vertigo! Just What I Don't Need!

Every morning, since July 4th, I've had episodes of severe dizziness upon sitting from a sleeping position (like being on a fast-spinning carnival ride).
Yesterday, I was diagnosed with Vertigo. Just what I don't need right now! And, of course, my fatigue is worsening too. I just want to sleep, all the time, forever.

No, I don't believe that was a statement resulting from severe depression, don't worry, I'm not thinking of ending my life. I'm just so tired of being tired and disabled...I wish I could sleep it off and awaken refreshed and renewed. 

A Bit More Independence and Perpetual Fatigue

On May 10th, my family and I went visiting some friends for the day.  We left my wheelchair in the car.  I sat in a chair at my friends' home (a leather recliner) and fell in love with it.  The next day was Mother's Day, here in the USA, so my husband and son brought me to Bob's Furniture store to purchase for me, the same chair that our friends own!  It wasn't delivered until the following Friday but now that it's here, I am so pleased; it's the best gift ever!

I am able to compute in the chair and nap in it too ( this is a bonus since I don't have to remove  my AFO (Ankle and Foot Orthosis) and shoes  as I do when going to my bed -since I need those and my arm sling to walk, I'm saved 20-30 minutes of putting them all on again when my nap is done).

My husband has made some furniture positioning changes in our kitchen (the table moved away from the wall to the center of the room -allowing me to use it as a sort of launching zone from all things in the kitchen...sink...fridge...cabinets...stove...microwave...counter tops) which has enabled me a great deal more independence so, this along with the new chair (which allows me to sit in real furniture from which I can get up to standing very easily) means that I no longer need my wheelchair in the house.  The wheelchair has now taken up residence in the trunk of my car.

I've been fairly pleased with my progress at home but I'm a bit annoyed that I also seem to have acquired a perpetual state of fatigue.  My doctors have done lab work to check my thyroid, iron, vitamin D, etc, but all are normal; yet everyday I awaken tired, as if I hadn't slept at all.  I linger in bed hoping to sleep more but can't always manage it.  The thing that finally prompts me to get up is either hunger or the need to urinate.  I know that it's normal to feel tired after a stroke but it's been 10 months since suffering the stroke (CVA) I'd expect to be past that tired phase by now.

This life of paralysis is very difficult but I'm slowly making some progress!

This life of paralysis is very difficult!  I'm sad and being treated for depression.  I had been feeling more positive last week while my mother-in-law was visiting.  I love her.She encouraged and helped me to be more motivated with doing my exercises and with trying to do more tasks on my own but since she left here to return home (3 hours away, in another state), I miss her terribly and have come to realize (that living with men -hubby- and -son- and having no sisters or daughters, nor mother) how very much I am in need of female companionship.  Now that my mother-in-law is gone from my home, the house and my life feel a bit empty.

However, this post won't be all negative and 'woe is me' as I do have some positive accomplishments to tell since my last post.  A few weeks ago, I was finally able to put on my AFO (Ankle and Foot Orthotic)and shoe without assistance which enables me to be totally independent with dressing myself each day and also means that I no longer need to awaken my hubby for assistance should I require a middle of the night trip to the bathroom (luckily for me, that doesn't happen often-it can take 20 minutes to put on the AFO and shoes and arm sling(all required for me to walk).

Three nights last week I was able to prepare dinner(supper) for my family with minimal assistance (this made me happy beyond belief)!  It was tiring standing at the stove top but was nice to hear my hubby joyfully say 'Look at you; you're cooking!' and my son say 'Mom, it's cool seeing you cooking again.'

Another accomplishment:  I went grocery shopping with hubby and his mom (I used one of those motorized shopping carts.  I had a blast!  At one point, while motoring around, I looked up at hubby with a huge smile on my face and said, 'I'm shopping!'  Hubby said it made his heart happy seeing me so happy.  Are you wondering what meals I prepared?  For those of you who know me personally, you can probably guess which favorites I made... Sausage soup, one night.  Lasagna another night and one Weight-Watchers recipe that we all enjoy...pork chops with a spicy Dijon mustard sauce.  On one other night I made a sweet-and-sour sauce to accompany a stir-fry dish my hubby made.  I can't share my soup or pork chop recipes but I can give you the link to the sweet and sour sauce.  It was quite good.  I found it at About.com:  http://chinesefood.about.com/od/sauces/r/sweetandsour.htm

That's all I have for today.  Thanks for reading my blog.

Family's First Public Outing

Made a trip to the shopping mall with family yesterday.  First non-medical related outing since the stroke, 8 months ago.

I wish I could say it was fun but I didn't really enjoy it.  It made my hubby happy though, being out doing something as a family again, so for that I am glad.

We had a goal to find some Velcro closure sneakers or shoes that would fit over my AFO (Ankle Foot Orthotic).  This in hopes of making it easier for me to put on my AFO and shoe without assistance, allowing me to be more independent.  This is something I've been working hard on and struggling with for the past 4 days.  Good news is I've had a few successful attempts; but it takes forever!

Almost crashed into a child at the mall.  Hubby was pushing the wheelchair and suddenly, out of the crowd of people, a boy about 5 or 6 years old walks across our path in front of the wheelchair.  He had his attention on the hand-held game system with which he was playing instead of looking where he was walking.  Luckily, hubby spotted him in time to avoid a mishap.

Using the public bathroom at the Sears store was only slightly problematic,as I require hubby's assistance in the bathroom, the first thing we had to do was wait for the women's bathroom to clear out.  Once that was done, Hubby brought me in while Son stood guard outside to warn any women about to enter that there was a man in the bathroom.  Apparently this caused a problem of some sort because just after Son told this to someone, there was a store-wide announcement of a Code-1.  That didn't affect my use of the bathroom luckily.  The only 'trouble' I had was with the grab-bars being on the wrong side of the toilet for my use.Seeing this ahead of time, Hubby quite cleverly positioned my wheelchair next to the toilet on my strong-right side;I was able to use the chair's arm rest to raise myself up.  Washing hands, I needed assistance to access the soap as it was a pump requiring two hands (which should be clear by now, I don't have).

We had a meal in the food court too.  I had been wanting the Orange Chicken from Wok USA.  I use to love this but because of my loss of tastes, it wasn't as good as I remembered it being.  I don't know if I've blogged about my food issues since the CVA or not; before the CVA, I enjoyed a wide variety of foods, but since the CVA most everything I loved no longer tastes good to me.  In a way I feel as if I have regressed to my childhood eating habbits.  As a child, I hated just about everything (except my mother's Pot de Chinois).  The one thing I do enjoy now is too expensive to have all the time... (Japanese - sashimi and a salad with the ginger salad dressing that a local Japanese restaurant makes).

All-in-all, I guess our little outing was successful.  I found some velcro sneakers into which  I can get my foot and AFO.  However,I didn't try walking with them while in the store, which on hindsight I think I should have done.  The size is so much larger than what I would wear normally so I hope that doesn't cause a problem for my strong-right side.  I'll have to give it a try today.  If it is a problem, then I guess the only solution would be to buy a second pair in the smaller size to fit my unaffected right foot.

Itchy and Twitchy, but not YET Bitchy

My body has been doing something new for the past couple of weeks. When I lay down to sleep at the end of the day, I get a series of strange itchy feelings (strange in that it feels prickly, like someone is poking me with a pin).  Sometimes it's in my left foot or toes, sometimes my thigh and other times, my abdomen but always on my stroke-affected side.  These itchies are then immediately followed by a twitching (or jerking) of my left leg.  The best I can describe this is... you know how if you are dreaming that you are falling, you may suddenly startle yourself awake with a jerking motion?  It's that sort of action but only my left leg, it pulls itself towards my upper body.  This is all very annoying and makes it difficult to get to sleep no matter how tired I may be.

My physical therapist says it's called 'tone/spasticity' and it commonly follows the flaccid stage as the 1 year mark since the stroke draws nearer..

I told hubby that I'm Itchy and Twitchy so he asks, Are you also Bitchy?  I'm not that yet but I reserve the right to enter that phase at any time.  I think he's more bitchy than I lately.  This life of recovery certainly isn't easy for  survivors but it sometimes seems to be almost as difficult for our caregivers.

Prognosis

I've recently communicated with a friend with whom I've not communicated in years, he asked me about the prognosis for my recovery and his asking got me thinking that maybe there are other of my friends and family wondering the same, hence the topic for my post today.

From the start, I was told by  that it was unknown whether or not I would make a full recovery, that every stroke and every person is different so, recovery predictions cannot be accurately made; however, I was also told repeatedly that the first three to six months post-stroke are the most crucial for receiving physical therapy as that is when the brain is most receptive to creating new pathways (which is essentially what is required for recovery )and that function can return to the extremities as much as one, two or three years later so there is always hope.
Thus far, I've re-learned how to sit, stand, walk,smile,and eat without wearing my food at the end of a meal, now in therapy I'm working on standing balance and duration as well as as well as getting my left arm unfrozen from the bent across my torso position  and trying to regain  movement of the arm and hand and fingers (I'm getting an occasional indication of something happening).  On a visit to my neurologist in January (my first seeing him since leaving the hospital in August) he told me that I've come along further than he had expected, so that is encouraging.Overall though I struggle with staying motivated and sometimes think I may be teetering on the edge of depression.  Aside from that, I can get myself feeling really sad for my hubby in that he's had to take on so many responsibilities in addition to still working full time.  He is highly stressed and overtired most of the time.   The entire household (myself included) is rather cranky most of the time too.

HEALTH, THERAPY, FRIENDS, MAILBOXES and COMMODE BUCKETS

HEALTH ISSUES

I currently have some other health issues going on and today it seems the phone won't stop ringing with phone calls from doctors (and a few telemarketers too. I don't understand why the keep trying to call us, we never answer their calls... you'd think they'd give up; stop wasting their time with dead-end numbers.)

THERAPY

Aside from the other issues, I've been busy with PT (Physical Therapy), for my standing balance and walking, and OT (Occupational Therapy), for therapy on my arm, twice a week this month (January). My 1st session with OT was rough (painful) but in the long run, worth it. My shoulder had started to freeze up and was stuck in the bent position across my torso and it hurt quite a bit for anyone to move or manipulate it in any way. Now, after only two OT sessions, using my good arm I am able to lift it to table height in order to do stretching exercises. I'm now feeling very hopeful  that things will change and my arm will improve enough to use it again. My therapy currently includes Neuro Muscular Stimulation (sometimes referred to as E- stim or electronic stimulation), McConnell Taping ( a method of taping the shoulder to support it because of my subluxation) and passive exercises (meaning, I use my other arm to move my affected arm through a series of stretches). We've also ordered a GivMohr Sling which I heard about from someone on the Stroke Network forums and my OT asked around about (it looks promising on a number of levels.. I'm looking forward to trying it out).

THANK GOODNESS FOR FRIENDS!

I have to give a loud shout out of Thank you for my friends, Liz and Peter W. for all their help, patience and generosity with providing me with transportation to and from my therapy appointments. This takes a huge chunk out of their time each week; I hope one day I'll be able to thank them in a BIG way.

WHAT DO A MAILBOX AND COMMODE BUCKET HAVE IN COMMON?

And now a topic not related to my stroke or my health in any way. It turns out that this is the season of the mailbox. We keep losing it! During our fist snowstorm of the season, we awoke to find our mailbox atop the snowbank at the edge of our front lawn. Apparently the City's snowplow knocked it off it's post. It took 2 phone calls and 2 weeks but eventually, the City DPW finally came and reattached it to it's post.... Just in time for our next big storm... this time the plow knocked the door off the mailbox itself. The City informed me that they'd provide us with a new mailbox (this was the first week in January)... fast forward a few more weeks, our weather got unusually mild for a bit, enough to melt a lot of the snow on the ground and to reveal qite a lot of old, and now damaged, mail that must have been buried in the snowbanks during the first storm (we found a couple of past due bills, a refund check and holiday greeting cards - the photos were ruined).

Then, guess what happened... another snow storm and another knocked down mailbox! The City came yesterday and installed our new mailbox stating that they'd be back in the spring with a new post. Which I'm sure we'll need by then. Now guess what ... we're suppose to get another storm this weekend. I wonder if our shiny new box will survive.

 Both times we lost our mailbox, we hung a commode bucket from the post to provide a container for receiving our mail. If there are any health care professionals in our neighborhood that may have recognized the bucket for what it truly was, they must have had a good chuckle.

Accessible Bathrooms - These Are Not One Size Fits All

Since the beginning of my recovery, toileting(using a bathroom/restroom) was the first and biggest hurdle, and continues to be (not sure for how long, maybe until I get full recovery in my leg?). Initially, while in ICU, I was lifted from my bed using a mechanical lift (as mentioned in my first post) to a bedside commode. After that, before I was doing any walking, the commode would again be at bedside and with the help of the nursing staff , I'd be helped to standing and then told to pivot, basically rotating on my heals, to sitting on the commode. This wasn't done very often out of concern that my foot would tun on it's side thereby resulting in my ankle taking all my weight, which could result in many other problems such as a breaks or tears. I think that this is the reason for which I was fitted for an AFO (to protect and stabilize my foot and ankle) Eventually, I was given a wheelchair and taught how to get from both the bed to the wheelchair and from the wheelchair to the toilet by using what's called a slide board. One end of this board, (often made of a highly polished, finished plank of wood) is tucked under the thigh of the strong, unaffected leg and the other end is placed onto the toilet seat. The transfer to the toilet is then accomplished by sliding one's bottom along the board using the strong, unaffected arm to push the body to the other end and onto the toilet. Once there, all that is needed is to stand, lower the garments, then sit again. However, until I regained control of my sitting balance, I required some sort of support to hold onto (such as a bar on the wall or arms on the toilet - I had and have a commode, with arms, over the toilet) to keep from falling off the toilet these all introduce different considerations when using different bathrooms. Because the slide board can only be used on the strong, unaffected side, the placement of the toilet in the room is significant. For those with a strong right side (like me), the toilet needs to be on the left in order to approach it from the right, obviously,the opposite is true for left side strong. It also means that there cannot be any obstructions in the space to and from the toilet (the arms of the wheelchair and commode must be able to lift or lower out of the way for the transfer).

Once I started using the KFO to walk,transferring to the toilet was so much easier, I could walk short distances to the toilet from the wheelchair, turn myself around then do what's normally needed to sit. The only considerations then (and continue to be today) were (1) the height of the toilet from the floor and (2) are there any grab bars and where are they positioned? The grab bars are necessary to push myself to standing as my legs are not yet strong enough to make that push on there own. This combined with being a tall woman are the reasons that toilet height are important. Toilet and grab bar placement in the room remains an important issue as long as I have the use of only one arm. at home, I have a commode with arms placed over the toilet (it gives me the proper height and the arms allow me to get up at my own doing).

So I guess because there are a number of ways that a person with disabilities can make use of a bathroom, it's easy to understand how an 'accessible' bathroom may not be able to accommodate the needs of all; however, it still came as a surprise to me the first time that I made use of a 'public' restroom labeled as wheelchair accessible. The first time was during a trip to a hospital and an adjacent medical building (offices of doctors and other providers of medical services - I was there for an adjustment to my leg brace -KFO.) . I encountered a variety of 'problems'.

Because I am one-handed I must maneuver the wheelchair with one hand and one foot but because I also need my quad cane to move from my wheelchair to the toilet, it's necessary for me to carry my cane with my good arm (while resting it on my foot) and then have another person push my wheelchair around, so, being that my husband is typically my 'other person', the first problem to solve is how to gracefully (politely?) bring a male into the Women's bathroom with me. Some places have Unisex bathrooms and these, of course, are preferred, but the first place at which we were did not. My husband 'solved this problem' by opening the door to the Women's room and loudly announced 'Housekeeping' to determine if anyone was there (luckily, there wasn't). So, in we went. The other problem here was the placement of both the soup dispensers and paper towels. All were out of my reach from the wheelchair! This was especially surprising to me because I am a tall women with a very long reach. (Heck, I haven't been in the situation of not being able to reach since I was a child).

Other problems encountered:

• - a couple of the bathrooms had the grab bar attached too high on the wall from the toilet, I couldn't get proper leverage to push myself to standing. I hate to be redundant but, being a tall woman, I can't help but wonder how people, shorter than I, manage to get up again, I'd still be stuck there if my husband hadn't helped (lucky for both of us, he's very strong)
• The door into the bathroom was so heavy on one bathroom we used and the spring on which it swung such a quick release that my husband had a difficult time holding it open while pushing the chair in at the same time (how do people alone manage that one?)
• One stall had barely enough room to fit the wheelchair in and allow proper closing of the stall door afterward
• BTW - we've been in other facilities since and the problem of bringing a male into the Women's bathroom was solved with the help of building staff (first, checking to see if anyone is currently using the bathroom and then to stand watch outside the room to alert women entering that there's a male in the room. Some places are very accommodating.