Sunday, November 29, 2015
Maybe I got up on the wrong side of the bed. Wait I can only get up on one side of my bed, so that can't be it. Even if I could sleep in my bed. (I explain this farther down) Nothing tastes good. Nothing feels good. And, all my little blessings that I count on for hope vanished. I was a horse rode hard and put up wet. Even today, it hasn't let up and I'm feeling depression creep in.
It started after I got a letter from Social Security. They have scheduled me for a competency evaluation. No one in my entire life has doubted my mental competency before. I'm the one everyone runs to with their problems. I have some cognitive issues since my stroke. I'll admit that freely. I can't add or subtract in my head anymore, but I always have a calculator handy. I can't count change correctly, but I mostly use my ATM card for that very reason. All my bills a guess-ti-matedly paid in advance until February.
Reading may take several attempts before I fully understand what I am reading. I don't write coherently pen to paper, which is why I use the computer when I can. The dyslexia makes reading fiction almost an impossibility. The fact that I still seeing black dots in my left eye compound my vision problems. The black dots are floaters of blood inside my eye. They are getting smaller and in time they will disappear just like when I had a partial tear of my retinal a dozen years back.
Yes, there are quite a few things I cannot do because of my physical limitations, but hey, I'm taking care of all my daily needs. I hit the majority of things that have to be done and I'm not afraid to ask for help. I haven't burned my house down around mt ears, yet. I did manage my terminal husband's care before he died and was Johnny on the spot for everything. But yet, I may not be competent mentally and physically. Didn't a judge rule me ineligible for disability almost two years ago? What's up with that?
This whole thing has stuck in my craw. What if I'm deemed incompetent? A guardian has to be appointed. There goes any freedom and independence. Everything I've fought so hard for almost four years to regain is for naught. It's a whole, big, jar of stinky, festering worms. It doesn't help that each day I realize something new I'll lose. The prospect actually terrifies me to no end. Just the possibility.
So all of this has been hanging over my head for two weeks and still another week to go before the appointment.
During this also I impinged and tore my rotator cuff in my affected shoulder. Don't ask me how I did it. I have no idea. I just woke up one morning with moderate pain in my shoulder and almost screamed when I tried to move it. One school of thought is that it was induced by my upper arm spasticity. Surgery is again out of the question since I failed my last cardiac stress test. I wouldn't wake up from the anesthesia. So once again it's more therapy for my shoulder. and cortisone shots but I've used all my insurance visits so it's private pay.
The thing about these, besides the lack of sleep and pain, is when I reposition my leg to relieve the charlie horse the front muscles of the leg will go into spasm. So it's a damned if you do and damned if you don't situation. I'm writhing in pain trying to put on an ankle sock, AFO, and shoes to get up and walk around because then, neither muscle will cramp. There will only be the hangover effect of the pain when I crawl back into bed fifteen minutes later. I'll just fall asleep again when that dull ache sharpens and the cramping begins again. I've turned myself around in the bed to press the headboard (neat trick with only one repositioning my whole body), but the spasm is too strong. I'll have to do the process all over again. This hasn't helped my awake disposition any.
This week in southeast Georgia we had a cold snap. Night time temps hit the upper 30's. I still had my windows opened. BRRRR! It was in the low 50's inside my house. Why were the windows opened? They've been opened since my girls opened them. They require two hands to operate even to close them. Not that I minded when it was warmer, but this nice, cold breeze was now coming into my house. I called my daughter and told him that I was going to call my neighbor to close them. She told me not to bother that she was getting off from work in a couple of hours and would do it.
I went to therapy and when I got home, she was here. She closed the double casement window and turned to say something to me, her feet tripped her up, and she fell. She landed on her knee first and then pitched head first onto the carpet. She reached her hand up to her forehead and it was pouring blood. Head wounds always bleed bad. So I went and got a towel out of the bathroom to staunch the flow. It stopped within a few minutes of direct pressure. Then I looked at her knee. A bad bruise was already forming. She said it hurt but I helped her to her feet and she could hobble. We cleaned and bandaged her head. I knew she was hurt. She fell in the office but my floor are only padding and carpeting covering a concrete slab.
She closed the rest of the windows and almost immediately it got warmer inside. She said she was going home and would pack her knee in ice. This child had spent her entire life fighting rheumatoid arthritis, she knew what to do plus she worked for hospice. I told her to call me when she got home. She promised she would.
I was already feeling under the weather. Post nasal drip trickling down my throat was causing more esophageal spasms to the tune of three times a day. This really sucks because I'm basically choking with a partially obstructed airway not to mention being hoarse and croupy afterwards. By Tuesday, I knew I had a sinus infection. Not only could I see it, but taste it as well. Darn allergies. I called my PC figuring I could at least get an antibiotic. It being Thanksgiving week, I knew he wouldn't be back in his office until Monday. His office staff are his family members and I remember them as small children. His daughter said he was seeing his last appointment, but if I could come in, he'd check me out. I was thanking God for every green light. I walked out with a new nasal spray and a prescription for Leviquin.
I rushed to the pharmacy to get it filled. Once home again, I popped the first horse pill and shot the nose spray up each nostril. I sure didn't want to be sick for Thanksgiving. The spray brought instant tears to my eyes followed by a burning sensation in my sinuses.I looked at the ingredients of the spray to make sure it wasn't hot sauce. After a couple of minutes the pain subsided. I washed my face and started cleaning the bunny cages. When I put each rabbit's toys and cuddlies (a square of fleece blanket) back in their cages they always make a big show of rearranging their cages to the way they like it.
Finally, I sat in front of my computer and read the instructions on the spray. Twice a day. Needless to say I was leery about doing it again. But the second dose wasn't near as bad. The first onslaught just told me how bad my sinuses were inflamed. Now it doesn't bother me at all which is a good thing.
Thanksgiving was bittersweet. For once I could stay as long as I wanted because I didn't have to rush home for my husband. All my brothers and sisters were there, their children and their grandchildren. A house over flowing with too many conversations going on at once. I was lost. It was only at the end when it was just my baby sister, her family and my daddy that I could actually tune into and participate in a conversation. We talked about her first memories of Daddy, different foods we had eaten, etc in a more relaxed manner. All I could think about was how turkey and dressing was my hubby's favorite meal and the competency evaluation coming up.
How have you been?
Sunday, November 15, 2015
Know most of us how to tie our shoes. We learned as children. With my own children, I either used the bunny ears or the squirrel-ran-around-the-tree learning poem seen in this video...
For me, it was the double whammy of having a stroke and losing the use of my dominant side also.Nothing is ever easy when you are trying to do something with your nondominant side. After all, for me, my dominant side has been in control for over fifty years. If it takes that long to make my nondominant side to become dominant, I'm just out of luck. It still feels awkward. I still mentally picture my right, affected side as dominant even though it's ate up with spasticity and partial paralysis.
Look familiar? These methods haven't changed much in decades.
But all that changed for me after my stroke. I struggled with one handed shoe tying to the point where I just bought elastic laces. It was a cop out and a way to get my shoes on without breaking out in frustrated tears. Just after your stroke, the least frustrating method is best because you are having to reteach your body how to do EVERYTHING! I know I'm not the only one who felt like they were in somebody else's body and trying to get it to move normally like a puppet master with disconnected strings. In the beginning, I chose what I could successfully achieve. The fogginess in my brain didn't really start to clear for several months and honestly after three years, there are still some issues that don't make sense when attempted.
|Confused and Awkward|
Back to shoe tying or bow tying. I have mentioned before that now my stronger learning capabilities is visual. I spend a lot of time on YouTube and Vimeo just seeing if there is an easier way to do things, or how others missing the use of a limb accomplish tasks. Yes, there is also that "not alone" sense of gratification too. All written instructions read like stereo instructions in a foreign language to me now. Watching a five to ten minute video cuts around dead brain cells fairly easily for me. I may have to watch it four or five times to get it locked into my brain. But that's the beauty of videos, you can pause it, rewind it, and watch it again.
I guess it took me about a full year to even attempt tying a bow single handed. It probably would have been easier with shoe laces, but that wasn't the issue I was having. It was the bow on the front of my shorts. It wasn't because they wouldn't stay up because the waistband was elastic. When the ties came undone, they would hang below the length of the hem. This was especially/possibly a messy situation when going to the bathroom. Plus, it looked sloppy untied. I have enough not going for my looks without looking unkempt too.
So I was sitting on the commode fiddling with it. I had watched several videos on how to tie shoes with one hand. Eventually, I settled on the one shown in this video. It just sort of clicked. There are many such methods so use the one that works for you.
I Love Success!
I hobbled out of the bathroom to my husband's hospital bed. I told him to watch. I undid the bow and retied it again. I was like a kid with a new toy! I was so proud of myself. My hubby went into the cheering mode like he did with our youngest who'd had a TBI (Traumatic Brain Injury). You'd have to see this corny, backward hands clapping motion and him barking like a seal. I'll have to get my oldest to do it on a video to share with you. She does it best except she doesn't have his deep baritone voice. It's something that was uniquely his. A sign of approval and pride.
It was so unusual that the girls had mentioned it at the Pastor's visit before my hubby's funeral. It kicked in my PBA (PseudoBulbar Affect) at the funeral when the pastor recreated it for the mourners present. I went from crying tears of sadness to uncontrolled laughter. I had to stand and touch his casket to regain control.
Anyhow, I can tie my shoes if I ever get shoes with laces on them again. Right now, Velcro closure orthotics shoes are all I can wear with the special build ups because of my AFO, contractures in my Achilles tendon, and the spasticity in my leg. But in the meantime, I'll keep practicing on my shorts.
Nothing is impossible.
Wednesday, November 11, 2015
|Me on the red carpet! EEK!|
My preparations for the trip was no less of a minor tornado of activity also. I shopped for some cooler weather clothes, arranged for the animals to be taken care of, and packed. As I was packing, it hit me that my backpack wasn't going to be big enough so I grabbed my Samsonite duffle out of my closet. Everything fit in there perfectly. The only problem was I couldn't find the shoulder strap. I fiddled with it a few times to make sure I could hold it on my shoulder and walk. It would have to do, I thought as I went to bed. I'll make it manage.
Wouldn't you know the morning of my afternoon flight, my raw spot on my AFO clad foot would break open. Yep, an open pressure sore would definitely complicate things. I went to my doctor. He cut away the dead skin and gave me the usual ointment to promote healing, deaden some of the pain, and keep infection at bay. He had standing orders for me to keep off it. I crossed my fingers behind my back as I agreed to comply. There was no way to put off the premiere or the California trip.
|This bag and I have traveled the world|
Finally, I said the heck with it and carried the bag, my purse, and my cane sort of half mast on my upper forearm. The downside of being in a small town airport is that there aren't any porters to help you with your bags either. Luckily, two airport security folks saw me struggling and ran for a wheelchair. I started to protest that I could walk, but I looked at the long passageway and thought better of it. Oh boy! I hadn't even left town yet and Murphy's Law had hit me twice.
As we took off, the rain started. Do I need to mention how rough the flight was? The flight had been delayed for an hour and a half. So much for a two-hour layover in Atlanta while waiting for one of the stars of the movie. He had twenty minutes to get across Hartsfield-Jackson airport before we were refueled and ready to take off. Not that we would have left without him. The weather had gone from a light rain shower with a slight bit of turbulence to a heavy downpour with a light show. Four and a half hours later, we arrive in California. I think if we had actually touched the ground, I would have kissed it.
It was 10 PM PT, but all of us were on Eastern time by the time we reached the Hyatt Regency. So for us, it's 2AM. We checked in and they had taken my request for a close room and no stairs seriously. They were even apologetic about the room only having two full sized beds instead of the usual king suite that had been arranged. I think I got the better deal because I had a garden patio room. Great view of the beach and yachts too. I ordered room service and checked out my surrounding while I waited. After chowing down on a Reuben and fresh fruit, I fell into bed totally exhausted. I had a rude awakening about three hours later with my spastic leg. An unmerciless cramp, it ran from my thigh to my big toe. All I could do was beg, plead, roll, and cry until it was over.
I managed to get a few more hours sleep and awoke more tired than rested. I was excited about the premiere and knew there was a long day ahead of me. This is what the day's schedule looked like...
11:45- lunch with the cast and crew
1:00- media briefing
4:30- meet limo in the lobby. It may sound like down time in between, but the media briefing was over at 3:30.
5:00- event check-in. Walk the red carpet, photographs, get your name tag. I was listed as a stroke advocate.
5:30- cocktail party. I was thankful for the heavy hors d' oeuvres. I sampled most of everything from mini sliders to the smoked salmon.
6:00-8:00- the movie- Disconnected screening.
9:30- after party. I have to admit that I'm not a hip partier any more. I asked to be taken back to the hotel at 10:30. Again, it's Eastern time last call (2:30 AM).
I did mange enough time to swing by the hotel gift shop for some souvenirs for my daughters. The only bad thing was the exhaustion coupled with the limo picking me up for the flight home at 6:00AM. There wasn't time for sightseeing. It was all business. By 9 PM, I was in my own bed sawing logs. Like I said, a whirlwind. I'll have to go back to do all the rest. Maybe one day.
Now about the movie...
The Blurb -
In this first-ever documentary on PseudoBulbar Affect (PBA), award-wining documentarians Doug Blush and Lisa Klein will take you on a revealing journey as they follow the triumphs and challenges of people with certain neurological conditions or brain injuries living with this little-known condition.
DISCONNECTED is both an emotional and uplifting film about fate’s unexpected path and how these families support one another in an unsteady journey of both laughter and tears.
Release Date- 2016
The man in the first part of this trailer is Scott Lotan. I first saw him on YouTube (the clip of him laughing) when I was first diagnosed and doing research on it. I had the pleasure of flying with him and his significant other Mindy on the way to California and back again. A more down to earth soul as I'll ever meet. We are kindred spirits.
Unlike most in the film, I both laugh and cry with my episodes. I have no real control when it happens or know why it happens other than my damaged brain. For once since my stroke, I felt comfortable around a group of people. It didn't matter that I was paralyzed or couldn't totally control my emotions because they were like me and totally understood. We all had our little episodes and went on. I feel like I've made friends for life. I honestly feel honored by just being included with this fabulous group of men and women.
What I loved about California is no bugs! No mosquitoes or gnats! I didn't get bit once until I got back home.
It's like I keep saying...
You are not alone!
Sunday, November 8, 2015
That's what I thought of when I first heard of 3-D printers a few years ago. Shades of science fiction turning into science fact. Imagine the possibilities, both good and bad. It didn't take long for someone to print out a fire-able weapon with it. But, for general purposes, I'll ignore the more shadier aspects of having such a printer.
|List price $2,499|
The Ultimaker was rated as the best 3-D printer. (Top Ten Reviews for 2015) I guarantee we will look back on it in twenty years and snort that we ever used such a dinosaur. Just for reference I pulled out my first Atari game console to amuse my grandchildren while packing stuff up. They had fun playing with it but were soon bored with the limited graphics capabilities.
What could one of these printers mean for a stroke survivor?
How about eating utensils that you don't have to order and wait for it to be delivered. You could just print off what you needed; when you wanted it.
How about braces and splints? We have all spent untold bucks on braces and splints over the years. How long did you have to wait, doing without until it was delivered? What if the sales rep could take the necessary measurements and print it out while you waited? Now no more waiting for weekends, or holidays, or production/shipping time to end before you get a usable end product.
What if you needed something special? I know from personal experience, that it took two weeks to get a thumb/wrist splint modified so it would be flexible enough at the wrist to handle my spasticity, but firm and padded enough to prevent contractures in my thumb. During the wait, I had a cocked up wrist splint that spent more time off my hand than on it because the wrist wouldn't allow for the downward spasticity in my wrist. The plastic support actually sliced into my hand.
Anything you can design with CAD (computer aided drafting program) software can be built with these printers. You are only limited by your imagination. That's really awesome, isn't it? I can see the advent of a new "Want to/Get it/Now" opportunity opening up with this technology hitting the home markets as it is doing now.
I can see it now, they will become everyday household items that we can't live without like indoor plumbing, electric refrigerators and televisions were to my grandmother. Personally, I'm waiting on disposable clothing and food synthesizers. No more dirty dishes, burnt meals, or laundry! Yeah, George Jetson here I come.
Now I know if you were laughing about my custom built computer, you won't remember this from 1963. This was supposedly the 21st century. Well, the century is not over yet. Remember...
Nothing is impossible.
Sunday, November 1, 2015
The only reason the pediatrician can find for this is a strong family history for this problem. Needless to say, everyone is watching him carefully. High blood pressure is one of the leading risk factors for stroke and heart disease. He also has those things in his genetic mixed soup too which isn't a good thing. The genetic markers of family health issues is one thing I wish I could change about the legacy I passed down to my children and future generations. Like his brother's diabetes at age 4 years old. But we can't change our families.
High blood pressure was one of the risk factors that I gained from birth, but it was only a tendency. My strokes were caused by blood clots breaking free from my damaged heart. Coupled with thinning and hardening of my arteries, also a dual family history trait, didn't help. But I look at this precious infant just discovering the world aroumd him and curse genetics.
So how does my daughter combat the high blood pressure in her son? Well for one, she continues to breast feed him. She is also on a low sodium diet. What she eats affects what she feeds him. She makes all his baby food except cereal too. The only sodium she uses is what is found naturally in food. Now, keep in mind, my daughter has no blood pressure issues, but she is doing all of this for her son.
When you do everything possible to prevent harming your body, sometimes it's the genetic roll of the dice that affects your future. That's what we are praying doesn't happen for my grandchildren who are exhibiting all these genetic health markers at a younger age. With eight grandchildren, I've got a pretty good mix of genetics and dilution from their father to follow. With diabetes, cancer, stroke, high blood pressure, heart disease, kidney disease, arthritis to name just a few, I'm seeing all of these in a number of them.
So how do you balance the Russian roulette of genetic factors? Try to dilute the gene pool as much as possible through the fathers. Unfortunately this didn't happen for my children or my grandchildren. They ended up with double whammies. The same medical issues on both sides of the families. Poor kids. We don't often think of medical histories when choosing the fathers of our children and maybe we should.
Nothing is impossible.