Archive for the ‘Support’ Category

I have been all over the place…the doctors, the tests. I have worried about a job, disability payments and worried over our home, food, pets, kids. I have ridden this roller coaster for seven months now, all without a single doctor willing to commit to a diagnosis. None of them want to call it, or fill out the reams of paperwork needed for a disability claim. They pass us from doctor to doctor, each one ordering more tests we can’t pay for, each one passing on making a diagnosis.

I was focused on the nuts and bolts. The finances, how to pay the bills, keep the house, make sure my mate has what he needs. Than today it settled in. I am losing my soul mate of thirty-two years. What the Hell? He is losing the ability to speak. He is losing all strength in his hands, his muscles twitch in his arms, chest, legs and face constantly. He is unable to swallow liquid without choking unless it’s thickened. He needs to hold his neck in a certain position to swallow solid food. He could be here one year, or three, five or 10 years, or he could be gone in months. This is not how I saw my old age. I planned on aging with this man holding my hand. I am lost, not sure what to do next. Life is Jane and Ray, not just Jane.

Today I am in a whole new place. My mate of thirty-two years has ALS. My vital, active mate who goes out of his way to be there for kids, rescue animals and care for me, my home and my yard, may leave me. It is not fair. I am all over the place today. I am grieving, I do NOT want to live another twenty or thirty years without this man. I do not want to deal with my pain, my disease that has already forced me to give up a career and most of my life, without him. He is the only thing that made my pain, lack of life, bearable.

I want to control my own emotions to be there for him, to make it ok for him to be sick, to possibly leave me. I want to be there for my kids and grandkids to make it ok for them.

Then, faster than you can snap your fingers, I am angry. It’s not fair! He is one of the good guys. Why take him and not some drug dealing scum who settles arguments with a gun?

A few seconds later I am terrified. We owe money on the house. How will I pay for it. What about electricity, water, gas, a phone? I will have to come up with money for the property tax and I will be left without medical insurance. I am unable to work due to a central nervous system disease and relied on my mate’s income.

Then I go back to, “I don’t care about the income, I need to keep him with me.” He is a mere fifty-six years old. There are new discoveries and treatments that can fix this disease, but they are mired in Federal guidelines and paper work. Doctors are afraid to try things for fear that the government will shut them down. We need to take the hand cuffs off our medical researchers and move things forward before more people like me have to watch a loved one die too young. One group has proven that injecting a certain protein dissolves harmful protein from brain cells, reversing ALS symptoms, another shows that long-term, high doses of certain antibiotics reverse and stem symptoms. Yet one is not able to start trials on humans for another three years (what the hell) and the other is shunned because doctors could lose their privileges if they prescribe mass doses of antibiotics for off label use. Wrong, wrong and wrong. Treat these people now! If you are wrong, and the treatment is wrong, so be it, they are going to die young any how, but it is a step in the right direction.

 

 

 

ALS – Arrival

Posted: September 5, 2015 in ALS, Lou Gherig, Support, Uncategorized
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What a great day. We sat in the yard, drank our morning drinks, fed the dogs, watched the birds at the feeders and enjoyed each other’s company. Fast forward a few hours and you will find my husband, home after a visit with his doctor. My mate and best friend of thirty-two years telling me the doctor said he thinks his has ALS.

Not a shock mind you, as this is what took his mother, and we sort of waited, and feared this day for the past twenty years. But a shock non the less. The signs were there. He choked when he drank or ate. His throat refused liquid or food from time to time. He went for tests, they told him he had too much stomach acid and that was eroding his throat. We took that diagnosis, clung to it and gave him a pill to help.

A month or so later a co-worker took him to the ER because he was slurring his words so bad they feared he was having a stroke. Cue the endless rounds of medical tests and doctor bills. He still works, he feels great. But he is no longer willing to eat in public because it is embarrassed when his throat won’t accept liquid and it rolls down his chin, or he chokes when trying to swallow solid food.

His upper arms twitch and tremble and he can’t sleep for more than a few hours at a time.

The vital man, who spoils me, pumps my gas, pays the bills, wakes me with a drink and tells me how smart I am daily is struggling. It is wrong. He is a good man who works any hours needed, covers for co-workers, drives the kids to appointments and practices and refuses to let me carry groceries is failing. I read a study once where most married couple only communicate, personally and face to face fifteen minutes a day. We shattered that study! We spend hours together with our animals, talking or just sitting together listening to music. We make plans, design new gardens, gifts for the kids or talk about politics. Now he struggles to speak clearly and I must make him repeat himself often. It sucks.

This is a man who backs me all the way. He is there for all my kids in any way possible. He loses sleep to drive them places, attends marching band events, takes our boy to air shows and funds them in any way that will secure their future. He has given the kids gifts of time, money and caring that they may never appreciate. But he did it.

Now, I am faced with losing this man, our whole family is faced with losing him. What will we do? Why are human trials for ALS treatments taking so long to pass the FDA? I am angry, scared, stressed, sad. I am all over the place emotionally. I find myself worrying about how to pay for the house. What will I do when I lose health insurance. Then I am mad at myself for worrying about finances when he can no longer work.

This is living with ALS. It is ugly, it is relentless, it strangles whole families. It forces you to think about living wills, DNR documents and property wills. All things you do NOT want to think about when dealing with a sick spouse. My soul mate it fifty-six years old. One neurologist sent him for more tests, he tossed us a small kernel of hope, saying he was looking for something else.I grabbed that kernel and held on to it like it was life itself. Deep down inside, I feel that is just that, hope. Waiting for the good doc to have time in his busy schedule to tell us results. God forbid he tells us ASAP or via telephone. We have to wait two weeks. Do they know what this wait does to families?

I am just writing this all down as a way to cope with it, get it out. How do you prepare for the possibility of living without your soul mate for thirty or more years?

 

 

 

Due to some discussion about race issues in my family, I am putting up our family credo touching on who we let into our circle.
Whites, blacks, Hispanics, Asians, Native Americans, Germans, Swedes, Scots, Irish…get the point?
My family is (proven blood only, there may be others) Scottish, Yugoslavian, English, German. My father was the second child born in this country after his mother fled Yugoslavia when WWII was brewing. Some of my family came here earlier, during the time of slavery and revolution. Who’s to say I don’t have African-American blood due to a slave owner raping one of his charges? I think a huge amount of white Americans would be shocked to find out they have black ancestors.
My family also welcomes gays, bisexual, lesbian and transgender people. If God didn’t want them, why would he make so many of them?
Last but not least, I embrace all beliefs and love learning and talking to people about theirs. I respect all and take a little of each one for myself. Catholics, Muslims, Baptists, agnostics, Wiccans and others.
I take you at face value. If you are a good person and do good things I am with you even if you perform customs or rituals I don’t understand, eat food I know nothing about, read a book I don’t know or dress a certain way. A good person is a good person. A bad person is a bad person no matter what their belief. You were welcome in my circle until you prove you don’t belong here.

It was by far the oddest setting she had ever experienced.  The room was full of Democrats and Republicans, energetic, idealistic youth, middle-aged mortgage holders with job woes and the calmer, slower elderly battling arthritis and other ailments. It was not her definition of an ideal party.

She watched from  her corner perch. People flowed through the kitchen, dropping off dishes full of treats as they exchanged hugs. Wine and conversation flourished. Music exploded from a nearby speaker as young cousins ran hand in hand. Doctors, Lawyers and Judges clinked glasses with waitresses, mechanics and store clerks. Drinks flowed, food disappeared and laughter grew. One by one the group migrated to the festive living room.

It was here people handed each other brightly wrapped packages. It was here they related stories of their past. It was here they passed out more hugs than gifts. It was here she realized that she was going to like the family she married into. It was here she discovered the values that shaped the man she loved. It was here that she realized she loved her new family.  It was here that her husband pulled her into the group for a hug. It was here that she realized the perfect gift didn’t have to come from a store. It was the ideal party.

I vividly remember a Saturday afternoon, the summer of nineteen-sixty eight. A summer I was camping with my parents. I had done something wrong, I don’t remember what, but it was enough for my usually lenient mother to send me to the trailer, and bed as punishment. After what seemed like hours, my father came to talk to me. Feeling abused and unjustly treated, I wanted to tell my side of the story to my father. I also decided to include a new phrase I had  heard around the lake in my talk. When he told me how upset my mother was, I sat up and spouted my newly learned phrase.

“Well, she didn’t need to shit a brick over it!”  I did it! I pulled out an adult phrase showing my displeasure over their actions! I felt proud and strong. Then the hammer dropped, the room fell silent, my fathers face turned to stone. I shriveled in my skin, I had done something really bad! I spent the rest of the weekend in the trailer while my friends swam.

Years later, in the fun times known as the ’70’s, I sat in my usual place at the table during a family dinner. Feeling hip and grown up, I said, “pass the potatoes dude,” to my father. Things changed so fast I could hear the tinkle of ice as it shrouded the room. Dad slammed his fork on the table and mom fixed me in her stare. I was excused from the table and learned that I could call people dude at school and play, but NOT at home. I began to see the social rules, the morals and norms that kept families together. The values that helped us navigate the world.

Then came the children of our generation. We had already tested the water,  using lingo unique to our generation. Many of these new parents didn’t want to be “un-cool.” They let their kids be kids, speak anyway they wanted, with few boundaries. They continued to evolve, using new words and giving less respect to their parents and family. This has evolved into;

Suck it
This sucks
What ev
Meh
omg
Hate

We need to teach our kids  how to speak, with respect to themselves and others. We have to stop being “cool” and be parents. I don’t want my kid uttering the word “sucks” all day. I don’t want a “what ev” when I ask t hem to empty the trash. I want them to be able to converse, spell and build healthy adult relationships. It is up to us to give them the tools and discipline. We owe it to them to teach them how to speak, listen, learn, show respect, command respect and act. We can’t sit back and let their teenage, online communication form their adulthood. We need to have as much, if not more, input in their lives as social media.

The stress gripping her heart pulsated and swelled, leaving her lips numb, her vision blurred and her hands shaking. One more problem could very well explode her brain. She remembered her grandpa’s saying, “some days you are the dog, and others, you are the fire hydrant,” but he never told her what to do when you were being pissed on for an entire month!

What else could go wrong? Her computer died, her truck had no brakes, her stereo speakers quit working, her kid needed sixty dollars for a school fee, the electric company threatened to turn off the power if they didn’t get money, her doctor left the country, leaving her without medication and her car insurance  had been canceled. Hell, even her can opener had fallen apart. On top of that she was slated to cook Thanksgiving dinner for her family.Not a problem unless your oven stopped working and you can’t afford to fix it!

There was nowhere left to turn. Money wasn’t going to fall in her lap. She couldn’t fix appliances or vehicles with magic. Her kids couldn’t get what they needed as long as she was running the show. She was deep in thought, on various ways to check out and end it when the phone rang. The schools message stiffened her spine and forced her out the door. The school had been evacuated, there was an active threat in the building. Insurance be damned, she drove to the school and paced around the building, mingling with tear-stained parents hoping for a glimpse of their child. Hours passed as she  held her stomach and made small talk.

When her kids finally walked out of the building, she realized that all she needed was them, and they her. They rest would take care of itself.