Sunday Stroke Survival: Updates and Therapy

So I'm a day late and a dollar short this week, sue me because you can't get blood out of a stone. You will understand after you read this. I've had a week from hell.

First of all, my father survived his heart attack has now been moved out of the CCU. He's still on heavy doses of Heparin to reduce the chance of another heart attack and the possibility of having a stroke. Physical therapy has been in and they are walking him short distances. Needless to say, that the blockage and the subsequent death of part of his heart muscle limits what he can do. It's a rough adjustment he'll have to make and he doesn't like it at all.

This past weekend (Friday through Sunday) felt like it was ten days worth of activity for me. In between visits to the hospital, I have been the go between for my father and his condition for the rest of the family. Although I didn't see them at Christmas, this weekend made up for it. I saw and talked with each one of my brothers and sisters, my children and everyone's children and grandchildren that are old enough to be on their own. Not to mention my aunts, uncles and cousins. That's a passel of of phone calls, text messages, and emails. My unlimited cell phone plan got a work out for sure.

My twelve spoons of daily energy took a beating also. I think I borrowed enough spoons of energy into the next two weeks. I seriously paid for it last Sunday by not being to get out of bed for almost the whole day. My Fibromyalgia decided to yell at me and make its present felt too which didn't help. It was a day of a locked door and just answering the phone. I put peanut butter, jelly, and bread in a basket by my bed, and had four quart size bottles of water by my bed. I didn't move more than I had to. It just hurt too bad to do so. I haven't had an attack like this is a very long time. Even with the round the clock care of my husband didn't set one off this bad.

I finally was able to get the mail from my mailbox. I'VE BEEN APPROVED FOR SOCIAL SECURITY DISABILITY AND SSI!!!! It's only taken almost 4 years and losing my spouse. Yippeeeee! I won! This was my only bright spot.

By Monday, my fibro had settled down to a dull roar. I was in physical therapy bright and early at 8AM. I desperately needed the dry needling to make the residual pain go away. Of course with the fibro flare and the stress, my spasticity worsened a bit, but all it took was a few needle sticks to straighten that out. My arm is comfortably at my side now and my wrist is back to a 30-45 degree bend. My range of motion of my shoulder steadily increases with less pain. So on a whole, I live for and get a giddy excitement on therapy days, because once again I'm making forward progress.

While my physical therapist is Bobath trained (not certified), he uses anything and everything to get results. He spends his weekends (when not with his wife and children) reading of new ways to help his patients. Now THAT IS DEDICATION! I love people like me that think outside the box. My neuro responses, since my strokes, is opposite of what they should be. The normal response of needling the tricep should be the tightening of the bicep. If my bicep is tight, he has to needle my tricep to stop it from being spastic. If he needles my bicep, it will go into spasms. I'm even more Abby Normal than I was before my strokes. Go figure. Talk about crossed signals in the brain. I really do have scrambled eggs for brains.

My dry needling with working Botox sessions have resulted in almost normal tone in my upper arm, elbow and forearm down to almost the wrist within a year. That's with a reduction by half to none of the three muscle relaxers at maximum strength per day I was taking with Botox alone. My arm no longer draws tight against my chest. At the most my arm will bend at the elbow to 45 degrees. My wrist has play in it that will allow me enough movement to stretch it almost to neutral on most days. My fingers will open to a cupping position instead of a tight fist. If it wasn't for the contractures in my wrist and fingers, I imagine I could get better extension. I can almost fully supinate my wrist all but about 15 degrees now. Again the contractures keeps it from going farther. The spasticity in my leg only needs treatment once a month to keep it in check.  I'd call this experimental treatment a huge success for my post stroke spasticity. And, as awesome as all this is there is more...I'm pain free!

Therapists that keep an open mind are few and far between. Most do the same as they were originally taught in school for their whole career. The ones who excel and win the praises of their patients /referring doctors are even fewer especially when it comes to treating problems that are neuro in origin. Most therapist shy away from neuro patients because it's frustrating. Think what it's like for the patient.

Remember doctors and therapists are your employees. You can expect even anticipate positive results or fire them because...

Nothing is impossible.

Sunday Stroke Survival: Life Isn't Fair

Happy New Year everyone!

So how did you spend New Year's Eve? Was it spent partying and drinking with friends? Did you quietly watch the ball drop on the television and all the fireworks afterwards? Did you thank God that this year was over because it's been such a bad one for you? The new year has got to be better than the last one! I fall into the latter category as you can imagine.

New Year's Eve started just like any other day for me. I forgot it was the last day of the year. I really haven't exactly been in a celebratory mood for months. Sure there have been some happy moments that I'll cherish but nothing totally lifted me out of my grief. But I've put on a happy face and continued on.

I didn't even realize it was New Year's Eve until my physical therapist told me and asked if I had any plans or a special meal I fix for the occasion. All the while, he was searching for trigger points to deaden with dry needling.  I actually felt pretty good. The autumnal slump with my Botox was history and the new series was working as advertised. My shoulder which had a torn rotor cuff was healing, or at least wasn't painful when stretched. I'm actually 15 degrees away from full rotation again which pleases me to no end.

My cell phone in my shorts pocket rang. Yes, you read that right. It was around 80 degrees here today. I didn't recognize the number so I let it go to voicemail. Nothing interrupts my therapy unless someone is dying. Of course, if anyone I cared about was dying, I'd have their number in my phone. Makes sense, right? Whoever it was left a voicemail message so I didn't worry about it.

During my therapy session my phone started signaling a low battery so I turned it off. We finished the session an hour later and I drove home to charge my phone. As soon as it had enough of a charge. The unknown number showed up as a missed call. I called my voicemail to get the message left.

The one number I didn't have was my stepmother's cell phone number. Her voice was on the message. My father had been admitted to the hospital for chest pains. He was having a heart cath done, but his cardiologist assured her he'd be just fine. My father had had a heart attack and had quadruple bypass done a dozen years ago. I knew this was serious.

I kicked myself for stopping at the drug store and grocery store before going home from therapy. I should have spent that time at the hospital. I kicked myself all the way to the hospital. My stepmother had told me his room number in the message. It did not register in my mind that he wasn't on the surgical or regular telemetry floor until I got off the elevator on his floor. He was in the Cardiac Critical Care Unit!

I walk into his room and was jovial offsetting my fear. I asked him how he was doing and told him it was obviously my turn to visit him in the hospital instead of the other way around. He chuckled and told me what his cardiologist had said during the heart cath procedure. He couldn't bust through the clot to open it up. In other words, he was still in his heart attack phase with the clogged artery denying blood to the lower half of his heart. Just like with a stroke seconds equals brain cell death, a clogged artery equals heart muscle death.

They started him on some potent blood thinners, were giving him nitroglycerin, morphine, and ativan. That hopefully, this would dissolve  the clot and return blood flow to his heart. Because of his advancing age (80+), the degree of coronary artery disease, his diabetes, and the scarring from his previous bypass...another bypass was out of the question. There are a whole lot of risks managing a MI this way. The clot could dissolve from its 100% blockage state and he'd be fine again (best case scenario), the clot could break free and could possibly go to his brain giving him another stroke (moderate case scenario), or the clot could be stubborn and not dissolve, and kill him (worst case scenario). I should mention at this juncture that I've never heard or seen the best case scenario happening. That doesn't mean it couldn't happen. I'm just saying.

Later, I texted my physical therapist about what had happened and his wife (my old speech therapist) called me. They are both head of my stroke group and I count them as friends. 

She exclaimed, "It just isn't fair! You've already had so much go on!" 

I retorted, "Whomever told you life is fair? Life isn't fair. It just is."

Life happens. Good, bad, happy, or sad. All we can do while living it is hang on the best we can and adapt to the changes. Living is adapting to changes, accepting them, and moving beyond. So once again, I'm awaiting another life change. One that comes to all of us if we live long enough.

       O God, give us the serenity to accept
        what cannot be changed,
        The courage to change what can be
        changed, and the wisdom to know
        the one from the other.

                                           --Reinhold Niebuhr (1892–1971)

Bet you were wondering where to Serenity Prayer came from. Now you know. But more interesting is the rest of the prayer...

         Living one day at a time,
        Enjoying one moment at a time,
        Accepting hardship as a pathway
        to peace,
        Taking, as Jesus did,
        This sinful world as it is,
        Not as I would have it,
        Trusting that You will make all
        things right,
        If I surrender to Your will,
        So that I may be reasonably
         happy in this life,
        And supremely happy with You
        forever in the next.

        Amen.

Now you know where this principle in my life comes from.

Nothing is impossible.

The Best Christmas Present Ever!

I got the best Christmas present ever! I had been playing phone tag with my DAS (Disability Adjudication Services) worker (for Social Security Disability) since Friday morning. For some unknown reason, my cell phone went straight to voice mail rather than ring through. We called each other several times each time getting each other's voice mail. Finally at four o'clock, I left the final message on her voice mail, "Tag you're it. We'll try to play again on Monday."

Contrary to my own motto of "Why borrow trouble by worrying," I spent the weekend in turmoil. I worried that the evaluation didn't turn out well and my days of independent living was over. I mean what else could it be? The psychologist said it would be a month before they got the test results. I did feel that I had done poorly on the testing after it was over. That was a alien feeling for me, who has aced almost every test since high school.

I chewed my nails off on my functioning hand AND my nonfunctioning hand after prying the fingers loose from a fist. That's pretty bad because I haven't chewed my fingernails in years! I tried to keep knitting or spinning wool going, but I could only sit for so long before I was doing something else to take my mind off of the worry. I know I sounded like a whiny child to God in my prayers. Needless to say, it was a l o n g weekend.

Monday finally rolled around and I popped awake at 5 AM. Too early to call her back or her to call me. I stalked the clock with glances every five minutes...sometimes more often. I fidgeted until my rump was sore. I got up to play with the cats, and then the rabbits. At 730 AM I pushed the auto dialer on my cell phone and got her voice mail. GRRRR! Then playing devil's advocate, I decided to wait thirty minutes to try again.Wherever I went my cell phone was in the pocket of my flannel shirt. I didn't want to spend another day playing phone tag with her.

I was sitting at my desk when the phone rang. I pounced on it. It was only the drug store telling me my prescriptions were ready. GRRRR! Double GRRRR!

At long last about 10AM, she called. I sat and answered her questions. She told me she had received the evaluation report from the psychologist. I asked her outright if the results showed that I was competent. When she started off with saying that I had some definite issues, I wanted to reach through the phone and choke her. I wanted to scream at her to tell me a simple yes or no, but I bit my tongue and answered, "Uh huh." She continue on with the report.

Finally after she finished, I asked her point blank because I still didn't know the answer. "Am I mentally competent to live independently?"
She responded, "According to this report, you are highly intelligent, independent and capable. Yes."

She also told me she'd have her findings sent to Social Security by the end of the week. The cardiology report was enough to disable me. The stroke and fibromyalgia were additional disabling events according to them. Social Security would put the whole thing through their meat grinder process and I should have their results right after the first of the year. Here, I'm crossing my fingers for a positive result.

Before I ended the call I told her she had given me the best Christmas present ever and I thanked her profusely.

 But it all of this leaves me wondering...why couldn't this have been done over two years ago with my own disability claim instead of waiting until after my beloved's death? My disabilities are my disabilities. Granted my grieving heart is a little worse for wear after a year, but my stroke results and my fibromyalgia haven't changed. But once again, I'm not borrowing trouble. Right now I'm celebrating.

Wohoo! I'm mentally competent and I can live on my own!

Some Days I Think I'm Fine...

I haven't talked much about my grieving widow side. That's about to change. Some days I think I'm fine and handling my grief okay, and then something happens that makes me fall apart like my beloved's death was yesterday. Yes the first year is toughest and a huge transition! It's hard. The least little thing will upset my calm. It's always unexpected.

For instance...
Hospice called and asked if I could come and hangs my husband's angel on their remembrance Christmas tree. At first I said yes. Then as I was showering, I realized that I hadn't even been to his graveside since the funeral. I started crying and couldn't do it. It sounds like such a little thing to do, but for me it was impossible right now.

I was driving to physical therapy and a Christmas song came on the Christian radio station I listen to while driving. "A Different Kind of Christmas" by Mark Schultz.

It was the first time I've heard it. The tears started rolling down my cheeks so bad that I had to pull over.

The fact that it's the Christmas season doesn't help. It will be totally different than any I've had in all my years. I will be totally alone. All my children (sisters, brothers & my father too) will be in their own homes with their own families and in laws. My father will be in North Carolina with my stepmother's children. So instead of there being 50-75 head of people, there will be just me. Now I've had my share of invitations to join this or that family or friend, but I've declined. I just don't feel joyous.

Another part of me, I finished a mental competency test where I was drawing blanks for about half the tasks or couldn't verbalize the snswer. It didn't exactly bolster my feeling of well being. It will be a month before I know the results. Having a spouse die isn't enough to have to go through. I have the possibility of my independence taken away hanging over my head too. While I'm muddling through, I am not good company. Waiting has never been a strong virtue of mine.

Lastly, I received a package in the mail yesterday. It wasn't something I ordered. Inside I found two notes. The first one was an apology from the company for the long back order status. The second was a hand written note from my beloved to accompany the gift. I don't know if he meant it as an anniversary or Christmas present, but it was totally unexpected!

Some days I think I'm fine, but other days I'm a total mess! So now you know. May each of you have a blessed Christmas with you and yours.

Sunday Stroke Survival:Hog Tied

I'm going to be hog tied for the next couple of weeks with no time to write or edit.
Going into the holidays my schedule explodes with doctor appointments.
Dec 10th - Botox
Dec 12th- Psych eval for Social Security Disability
Dec 14th- Orthopedic for my torn rotator cuff
Dec 21st- Cardiology
That's on top of my twice a week therapy sessions.

I've been busy knitting mini Christmas stockings for all my relatives. I'll be stuffing them with Sea salted caramels, chocolate dipped Pretzels, two types of fudge, and other goodies from my kitchen. So far I've gotten 50 stocking made. Only 15 left to make.

I still haven't learned to be in two places at once or growing more hands.