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!

World View: My Rose Colored Glasses

I've been accused of looking at the world through rose colored glasses. Often, it's a derogatory statement from those who do not understand me. If that's what it called to be an optimist instead of a pessimist. I'm guilty as charged.

But that's not saying I'm naive to what's going on around me. It's just a choice I make. I have the know how to look at the big picture and the microscopic when dealing with this world and what it dishes out. I can talk the negative side all day long about heart ache and strife I've been through and am going through. I've been through a lot of SHTF (S**t Hits The Fan) situations in my life. When most people hear even part of my history, they shake their head in wonder that I'm not bitter and miserable. I tend to be prepared for the worst and hope for the best in most things. I've learned to adapt.

Quite often the rose colored glasses get broken. They refuse to let me see things as rosy. These moments I call being on the pity pot, as in self pity. Honestly, who could blame me for staying there? But that's not how I choose to live. It's no fun being there and living like that. Fear, pain, misery, and self doubt are all pitfalls to a happy, productive life.

Sure, I have a heart that's slowly dying and had strokes, but it could be worse. That brings me to my current dilemma. Mind you, I'm not on the pity pot. I'm just telling it like it is.

This week I received an ADL Questionnaire for Social Security Disability AGAIN. I need my rose colored glasses off for this and it's depressing. I can't write it out on the form for two reasons: I can't write legibly and there isn't enough room on two or three lines to explain. It would take pages to explain how limiting my heart is, what the strokes took from me and the fatigue, and how much the pain of my fibromyalgia and spasticity limits me. It would be a book by the time I finished if I include everything. But from what I understand, that's what is needed to qualify for disability. I had someone in an aid referral position tell me to dumb myself down. But I'm honest and there's the trouble. As I see it, I have two choices with filling out these forms: 1) Wait for one of my children, or 2) Type and print it out. I'm leaning towards the latter because my kids don't need to read all of this. It would shock them too bad. How much is too much information? All of this because I'm two years too young for Social Security and my pension!

I am able to do a lot mainly because I'm too pig headed to give up. Take bathing, a pre-stroke  shower took fifteen minutes.  Actually, I was able to shower, put my make-up on, and dress in fifteen minutes before my stroke. Now it takes me forty-five minutes, but I do it. I don't want to smell to high heaven or get some skin disease from uncleanliness. It's forty-five minutes getting into the shower, washing, and getting out. It's another twenty minutes to put clothes on because the exertion races my heart and I have to slow it down to stop the chest pains. If my right arm needs to be scrubbed, I have to ask my children to do it when they come over.

In cooking a supposed 30-minute meal takes me two hours to do, but I do it. I mean I got to eat, don't I? Most times, it's easier to go out and get it. I still have got three pounds of chicken breasts in my freezer that I bought before my husband died. I've got a pantry full of food but even using the can opener or boiling a pot of water is too much trouble when peanut butter or cheese slapped between two slices of bread is all the energy I can muster. That's with a night's sleep and a nap.

How bad is the fatigue and pain? A prime example even if yucky...I went to the bathroom a few days ago, and was too exhausted to reach around and wipe my butt. I even dozed off on the commode for a brief couple of seconds. And, my leg was so spastic that even rising to get off  was a feat done with gritted teeth. I was begging and pleading for the spasm to let up a little bit so I wouldn't fall. Still waiting for the Botox to kick in. I sure don't want raccoon eyes again.

This month, actually two months now, I've been going through mountains of papers in my effort to minimize what I have. I had nice neat little growing piles on my 11 !/2 ft desk. Up bounds the cat. She skids seeing the stacks but couldn't stop. Papers everywhere on the desk, the floor, and I even found a few where they flew into the closet. I bent over and picked them all up and stacked them again. This was after I had a screaming meme fit at the cat. So two hours later, I sink into my chair with my back yelling at me for the effort. The other cat comes in and does the same thing! UGH! The papers are still scattered after two days. I have a paper littered carpet.

Sure I keep rabbits and garden, but it's way different than what it should be. Just the snap, crackle, and pop factor of older stressed bones and muscles makes me want to stay in bed most mornings, if my bed wasn't painful to be in. I replaced my husband with animals. That was my choice or I wouldn't bother to get out of bed every morning. Caring for others keeps me going. Sure, I could have gotten a goldfish, but I know what motivates me. A goldfish wouldn't do not after being my husband's caregiver..

How do you explain all of this to anybody else???? This is some examples of my daily life activities and how it's been affected by my medical conditions. I'll take my rose colored glasses view of the world any day. Do you blame me? It's not because I don't realize what is going on in the world. Believe me, I know. But it's so much nicer with a rosy, positive outlook.

Saturday Saunter into Anger~ A Rant

I'm just irritated today. I read a post by Diane at The Pink House  on the Corner. She was asked to make a list of daily activities in the care of her husband who is total care after a stroke.

I did something similar couple of Sundays ago here. Although mine was a brush over my husband's care giving focusing on my schedule of what I can accomplish. Do the people that asks this question really understand what we do as caregivers 24/7? Do they think we sit on our hinny's doing nothing except for watching television and eating chocolates all day? I wish. Could they really afford to pay us? Not hardly, the bill would be outrageous!

By the same token, the powers that be wouldn't really hire someone when they can get it free. As caregivers, we give up the life we once knew. We say goodbye to a lot of things we used to have like sleep, vacations, and days off. To care for someone we love better than any nursing home could ever hope to, because we honestly care for them. I know because I did a short stint in those kinds of facilities. Not per a schedule of events, but as it is needed or wanted no matter what we have scheduled.

For years, I have scrimped, denied, and calculated every move I've made around my husband's needs. Scheduling and keeping appointments for fifteen doctors between Georgia and Maryland (just for him), medication lists as long as your arm and around the clock on-call care, monitors and alarms, and not to mention my own personal stuff or running a household. That's what being a caregiver is all about.

I've been his full-time caregiver since 2003. I sold my successful business consulting firm because I couldn't be traveling around the world anymore 75% of the year and care for him too. I took various part-time jobs as a culinary instructor, executive chef, writer and minister since then. Yes, it was my choice, but what alternative did I actually have? Could you see anyone else doing that job? For FREE or minimum wage?

I guess I could have had a live in college student. Room and board for exchange for services. And still, since my stroke I have been considering it again. We are honestly very private people and it would be another schedule to juggle. Is it honestly worth the hassle that might last twenty-four weeks if I'm lucky, before I'd have to go through finding someone else? Better to muddle through on my own. Believe me when I say I've searched for every angle and alternative.

Social Security has denied my petition again. The system is broke and no one know how to fix it. I don't mean to get political on this blog, but its the bureaucracy I'm fighting and I'm fighting mad.

They will willingly pay someone money per hour to care for my husband, but when I do it...forget about how much money I'm SAVING them. Don't forget I'm an RN too with 40 years experience! They couldn't afford me even part-time. Does it count for anything? Nope, not even a kiss my grits. All because I'm the loving wife. It doesn't keep my benefits intact. Mine have been slowly dwindling down to almost nonexistent with my husband's illness. I've checked into assisted living and nursing homes, and the cost is twice as much as we can afford short of selling everything we own. That would only care for us for a decade.

 When I broke my back, had a hip and knee replacement, and had to retire from my nursing career I had applied for disability and was denied then too. That's okay, I scrimped, saved, and went back to college to learn to do something else in my life. Screw 'em.  I thought, after my husband passes away there will be time to build it back up. I didn't count on a stroke disabling me. It seems I'm always saying screw 'em, I'll do it on my own except this time I can't and won't.

When does being a wife, mother, and full-time caregiver become a second class citizen? I've paid into Social Security for decades, but now they tell me..."Sorry we spent it all and you aren't qualified by today's standards." I would have been better off putting my money in a savings account. Earning simple interest I would have earned even more. If I continue fighting the system, I'll be eligible for retirement before its all said and done. Oh, wait. It will have gone bankrupt by then, or I won't have the quarters needed to draw funds because I've taken responsibility for the care of myself and my husband.

What is wrong with a society that allows this to happen? We are not building a self suficient life style but a dependent one. When hard working citizens get the shaft for doing what is right but not profitable. When it is easier to depend and lie to get what we want rather than what we worked for. When is it easier to step on the needs of others to make the almighty dollar to pay for a government already too big for their britches. Where it is easier to tow the line than to fight. It's okay Mrs. Murphey. Yes, you have worked hard all your life, but there's nothing available to you because you fall in between the cracks. To quote Howard Beale from the movie Network, "I'm mad as hell and I'm not going to take it anymore!"

Anyone know where a hemiplegic, who can't speak clearly with a husband that's dying can get a job? Oh, right I'm an indie author who might have another book published in the next two years. There's only a half a million of us out there to choose from. It only takes me half day to compose this blog. It only looks like it is effortless.

I feel my clock winding down and no help in sight. Have I got this last fight against the powers that be left in me? Only time will tell.