Friday, May 05, 2017

The big question for our society

Six years ago today, I had enough blood drawn to perform every test that could be done - as part of a work-up for what was not MS but presented with all of the same symptoms (and more). As I was exiting the parking garage at the medical center, I heard a loud pop and thought I had run over something. Since it was a metallic sound and I feared it might have punctured a tire, I got out to look and found nothing.

I few blocks into the drive home, I felt extremely weak. I figured it was from the amount of blood they had drawn and decided it would be safer if I stopped to eat something and let the weakness pass. I drove to what had been my favorite deli for a bowl of soup only to discover it was gone. Went on a few more blocks to my favorite salad place and there were no parking spaces. So, I came home, called Briana to cry on her shoulder and she brought me a black and bleu salad that I usually love.
But it tasted horrible this time. Almost like the metallic sound.

It was hours before serious pain and weirdness set in. This time, I called Jessica to cry on her shoulder. Really to see if I sounded strange to her because I thought I might be having a stroke. She said I didn't sound slurred but I did sound scared and that wasn't like me, so she wanted me to call an ambulance.

I spent a week in intensive care with a subarachnoid hemorrhage of unknown etiology. After two cerebral arteriograms, they were certain it was not a stroke but still didn't know what caused the bleed. Weeks later, a post swelling and bleeding scan showed scar tissue consistent with the healing of a ruptured aneurysm.

I feel extremely lucky to have survived this with no residuals that doctors can see, although I know small ways in which I haven't fully recovered.

Before this incident, I had already been determined totally and permanently disabled with juvenile rheumatoid arthritis and secondary chronic fatigue syndrome from pushing myself too far for too many years. The rehab doctor who headed the team that evaluated my fatigue said it was unlikely it could ever improve at all, and said he would rather tell me, "You have cancer and this will end soon," but unfortunately, it looked like I would live a long time and be miserable most of it. He said the best way to explain to family and friends what it's like to be me is to ask them to remember that time they had the flu with a high fever and they ached so badly that they thought they would rather be dead than to have to get out of bed - and tell them that's how I feel on my good days. The team apologized for forcing me to exhaust my energy but put me on machines to determine exactly how much strength and energy I actually had to work with. The determination was that I had the equivalent of four hours of energy a day. If I used eight hours one day, it might be a week or two before I recovered. And I might end up on the floor unable to move. That happened a few times.

Eventually, I learned to manage those four hours so well that the doctors asked me to write a book and help others. I didn't do that. Fiction was more fun.

The big question for our society is what we want to do with people like me? I devoted a huge portion of my four hours of energy to doing everything I possibly could to protect people who needed it most - and my four hours a day was much more than most healthy people give. I fought for same sex marriage even though I have no interest in women. I fought for unions, and unemployment, and minimum wage increases even though I never had a union job and will never have a job again. I fought for ACA even though I had Medicare. I continued to fight for Planned Parenthood and reproductive rights even when I was post menopausal, for schools when my kids were adults . . .
Most of the disabled people I know are like me. We want to feel vital and needed, and we want to contribute to the world. And it is nice when we are appreciated for our contributions, even if our wisdom and experience are all we have left to give.

Unfortunately, it appears that our society is learning toward rewarding people who stalk people like me, telling us to hurry up and die (and in the case of Sanders and supporters, calling us ugly names and threatening violence if we don't get out of their way), and following that up with electing people who want to take away our healthcare, housing and food assistance, and social security.
One step deeper into the heartless pit, instead of offering us a Dr. Kevorkian option, they want us to stick around for painful deaths without medications.

There is nothing great about a society that turns its back on and even mocks people who hurt for any reason.

Monday, April 10, 2017

Open Letter to Tom Perez

Dear Tom Perez:

I doubt I can type this letter without tears. I just hope I can do it without a stroke or using the cuss words that are clouding my mind. 

No, I will not sign up for “more information” about your tour with predator and traitor Bernie Sanders. I despise that man more than I have ever disliked anyone ever born. The only information I want to receive about him is that he was arrested with Trump or that he finally dropped dead. 

Why are you touring with a man who is NOT A DEMOCRAT, and who has done everything he possibly can to destroy the Democratic Party that he has lied about and publicly hated forever? Why are you celebrating this despicable person who purposely helped Trump and Russia destroy the election and what was left of this country? Why, if you are even a tolerable pretense of a decent human being would you have anything to do with this man who is terribly unqualified to be in any office, much less the White House, and who lied about President Obama and Hillary Clinton and the DEMOCRATIC PARTY

I am sixty-three-years-old and have been loyal and active in the Democratic Party since I was eleven years old. I’ve knocked on doors, stuffed envelopes, volunteered countless hours at Democratic headquarters, organized rallies and volunteers, driven to the state capital to volunteer at KDP, raised loyal Democrats – one of whom is currently organizing a convention for young Democrats . . .  And you are trying to reward the very people who are calling me “a shriveled old cunt” and telling me to “die and get out of the way” for people who have purposely turned this entire country over to Republicans? Are you KIDDING ME? (please insert the worst words you can imagine before the word kidding and I hope you know some worse than the ones Bernie’s supporters have called me) 

No. I don’t want any information. I don’t want anything to do with the Democratic Party until you denounce Sanders and his cult of destructive, nasty, deplorable emoprogs. I will unregister because I want nothing to do with a party that watched and mocked the Republicans for not standing up to their tea party but is now going to follow right in their footsteps. You can be that hypocrite without me because I don’t like hypocrites. You surely know that they purposely teamed up with the GOP tea party to – their words, “Learn from them now to destroy both parties from within.” If you don’t know that by personal experience, you should know it by observation from afar because, even the most inattentive people I know have figured out. 

I have removed myself from most mailing lists and will continue to do so until I get no communication from the party that YOU are [mis]leading, because it sure isn’t the party I have loved and supported and isn’t anything I want to be associated with now that you are traveling around with that DEPLORABLE man who is part of team Trump/Russia/Sanders. 

Trump is not the problem. The people who put him in office ARE and Bernie Sanders and his supporters did exactly that. You have proven already that you are one of them and that is the biggest disappointment of the year. 

I hope you and everyone who is walking with you right now suffer ten times the sorrow that surely lives in the heart of Hillary Clinton. 

With heartbreaking regret that I supported you,

Sandy Morgan

Tuesday, February 14, 2017

How many times can I ruin the same pot of soup?

The answer is: I don’t know yet but I’m working on an answer. 

It started when I lost my mind and cleaned out the food cabinet. Who does that? I think I have a Jewish friend who does that for Passover but she’s a foodlover who obviously appreciates any reason to handle food. Surely, most people don’t do that. (I’m okay with being the odd one out again if that’s the case.) 

I usually don’t think about cleaning cabinets unless I’m moving but for some reason did so yesterday. And in the process, I noticed I had several containers with only a handful of beans. I also had four opened bags of rice. 

Foodlover friend, you can stop reading now if you started. This is ugly. 

I tossed my handfuls of kidney, great northern, and black-eyed peas in a pot with that half onion and quarter green pepper getting ready to expire in the refrigerator, added some fresh carrots and celery and garlic, and started soup. Since I had the baby (yeah, I’m going to blame everyone but myself, even a three-month-old granddaughter) I was distracted and forgot to tilt the lid. So, the beans got mushy and I hate mushy beans. 

Worse than mushy, though, the soup was bland. Extremely bland, even after I dumped in a bunch of spices. 

I put the soup in the refrigerator and ordered pizza last night. Even though I stopped ordering my
food burned years ago, this one arrived that way. Too burned for my taste is totally unacceptable for most people. But, between the two, the pizza seemed the better choice so I ate some.

Tonight, I decided to try processing the mushy beans. Then I could melt cheese on top and it might be like refried beans. Seemed better than wasting them. 

Maybe there’s a secret? I lost the instructions to the processor years ago, so I won’t know unless someone sees this and tells me. I ended up with mushy bean juice all over the kitchen, even with all nifty plastic blockers in their correct spots on the processor lid. And, in all the crevices on the base because, obviously, the people who design those do-not-immerse bases get some sick pleasure from making sure there are crevices that are impossible to clean with anything wider than a toothpick. 

So, I tasted what was left of the mushy bean soup after it was pureed or processed or whatever people who know what they are doing call it. And, of course, it was still bland. But, I had bought a new essential oil today, and I was going to fix this problem and create something new at the same time. 

When someone takes the time to type ‘maybe not even a whole drop, you might want to dip a toothpick in the oil and then touch it to the soup’ that’s a good clue that the oil might be overwhelming.* I missed that clue. 

The soup was not bland anymore after I added a drop of cinnamon oil. Nor was it good.
No problem! I had pepper jack cheese to add. That would surely mask or at least tame the cinnamon. Seriously, other non-foodies, cinnamon is NOT ANYTHING LIKE RED PEPPER. I knew that. I really did. So why did I do this? Sigh. 

The pepper cheese was in the freezer but fortunately was shredded and I was able to break off a chunk to put on my soup. I might have known the truth about cinnamon but I really had no idea that putting shredded cheese in the freezer would make it smell so bad. I tossed that stuff in the microwave quickly and rushed to wash the stink off my hand. 

Turns out freezing probably doesn’t make cheese smell sour. I think there’s a very good possibility I bought and froze nasty cheese. 

I’m having leftover burned pizza tonight. 

Anybody want bean soup? I don’t deliver.

* To make a long story even longer, this made me remember when my father-in-law brought the teeny tiny green peppers from Bolivia to my parents' house one night. He warned us they were hot and we nodded and smiled, like, yeah, we know about hot peppers. He appealed to my husband, who explained in English that we would all share one of those teeny tiny peppers. Each of us would dip the pepper in in our soup bowl and then pass it on to the next person. They weren't kidding - the soup was hot with even that little dunk of the pepper.