I don't know what to feel about this coming year. I was so optimistic about 2015, and it certainly didn't work out the way I had planned or hoped. Maybe, if I look forward with no expectations, it'll be good? Ultimately, tomorrow will be what it is regardless of my plans.
No idea what I am doing. I'm not gonna bother with resolutions when I'm still figuring out what the new normal is.
I guess what I can say is this; another year under the belt, for what it was worth. Hopefully most of us managed to make this world a better place for at least one person.
It certainly wasn't all bad. As years go. Lots of bad to be found, sure, but plenty of goodness too.
Lost some people. Good people that will certainly be missed. No amount of time makes that easier. But also had some new people arrive. I got to know and come to truly love and appreciate some really amazing people.
I learned that I am loved and cared for than I could have fathomed. I also learned that not everyone I had thought was in that "loved and cared" for me in the past group was sincere. Live and learn.
I spent some way overdue time with my family. It's nice to know where your crazy comes from.
Saw WAY more of the inside of hospitals and doctors offices than I wanted. Still, I am grateful to have the ability to go get treated.
So I guess if I had to sum it up, 2015 is done and we can't change that. 2016 is coming and we can't stop it.
The only control we have is over our own hearts and minds. May we love, help, build up others, and for the sake of all things holy and unholy, be rational and avoid giving in to fear or ignorance. Look for the good and if you can't find it, be the good.
When you can't fight the tides in your life anymore, breathe and float with the current a little while. See where it takes you. It's OK to concentrate on just keeping your head above the water when you need to. We can't always be at the helm. (And other ship metaphors)
And above all else. LAUGH. You have to. Not a single one of us can add a millisecond to our lives by taking everything so seriously. Laugh your ass off in the face of everything that is scary or sad or aggravates you. You may look crazy, but you'll be laughing. And that means you win.
Thursday, December 31, 2015
Monday, December 28, 2015
Long overdue update and a teeny tiny winge.
Well. It's been a little while since I posted. Things have been busy here, just like in the homes of most people this time of year. Let's come up to speed.
I guess the best way is to do it in order.
They repo-ed my car. That happened. I tried to work with them, but in the end it apparently wasn't enough. Which is pretty craptastic. Attempting to ride the bus in my usual physical state is really difficult. Especially in this town. the closest grocery store is 2.3 miles from my house. Not an awful walk, if I was good at walking, or able to carry enough groceries on my back to feed 5 people, like a pack mule. The bus system in Vegas is abysmal at best, and getting to the doctor, store, pharmacy has been challenging. Speaking of getting to the doctor, we get to talk about the next part of the update.
I got to ride an ambulance last month again! Weeeeeeee! I woke up in an extra special amount of pain. To describe it most accurately would be this. If you've ever broken a bone, you'll likely agree that the initial breakage hurts, but not like the deep throbbing you have the next day. We start with that kind of pain, add to it the sensation of pins and needles, like when your foot falls asleep, and then set that whole mess on fire. That is the most accurate description of the pain that I felt/still feel often. This pain consumed my left arm and hand and spread across my chest. I was scared witless. I tried to reach any and everyone I could think of to take me to the hospital, and finally just gave up and called 911. The type of Scleroderma I have can affect the heart. Also I'm diabetic. Double heart risk whammy. You don't take chances with pain like that. So off I zipped in the ambulance, surrounded by muscular firemen, to my usual hospital. Where they pretty much immediately decided I was staying and started the battery of tests.
My heart as it turns out is pretty ok. Leaflets of my aorta are mildly calcified, but not too much, not enough to worry about yet. But what they did find is that my spine is a hot mess. Especially the C6 and C7 in my neck, The ones my Dr told me can be affected by my Scleroderma. Basically, my nerves are being constricted by my own vertebrae. It bought me 3 days in the hospital. It wakes me up almost every night. On top of the other joint pain. It will get worse. I don't know that it can be fixed.
But it's not ALL bad news. My Go Fund Me has been a huge help. We aren't debt free, but we certainly dug a nice chunk out of what we owe, and haven't been evicted. We even still have electricity! And speaking of my apartment, the managers have obviously noticed that we are struggling. So they showed up on our doorstep with a box of Christmas dinner. I cried.
The holidays have been nice. Got to celebrate with my family in a very cozy and relaxed fashion. AND I got lots of warm fuzzy socks to keep my toes safe and warm.
I am training to be a volunteer coordinator for the Have A Hart Day group in Las Vegas. I am hoping this allows me a way to still be involved in making the world a better place. Believe it or not, I wasn't studying to be a nurse for the gorgeous uniforms or glamorous hospital environment ...I wanted to help people. That hasn't changed a bit. I can hopefully coordinate from bed if need be.
Speaking of my RN schooling, I still don't know what I want can do there. I know working outside my home is off the table. Heck, working inside my home most days is off the table. But somehow, I miraculously maintained my GPA and am still financial aide eligible. So even if I don't know what I am going to do, I have the option to do something.
And now we come to the part where I get all whiny. Endulge me if you will. I need to get it out so I can get over it.
I am tired of being in this much pain. Other people get to live their lives, do normal things, I struggle for just the small things.
I know, I have a lot to be very grateful for. I AM very grateful for what I can do, and what I do have, and the support and love I receive. I know fully, that things could be a hell of a lot worse. It's why I give when I can, volunteer when I can and why any single one of you can count on me, to cheer for you, show up and support or listen to your troubles. That is not diminished by my pain.
But my pain is not diminished by those things either. I have never been an envious person. I never cared what the "Joneses" had. My grass is plenty green on my side of the fence.
Lately however, I find myself jealous of people. People who can sleep through the night without pain waking them. People who can plan things. People who can go enjoy the park. People who can wash their dishes without having to go lie down for a while afterwards. People who's family members don't have to worry if they are going to be "up to" things they want to do together.
So I apologize if I sound whiny. But I feel whiny today dammit. And I have been trying so very hard to be strong. That gets tiring.
And I am tired. Very, very tired.
Ok, I've said all I can say, and like it or not, you know know what I know. Such as it is.
Enjoy your New Year's festivities, kiss a pretty guy/gal/both/neither and let's bring on the next chapter of breaking our resolutions and seeing where 2016 takes us.
See you all next year. ;)
I guess the best way is to do it in order.
They repo-ed my car. That happened. I tried to work with them, but in the end it apparently wasn't enough. Which is pretty craptastic. Attempting to ride the bus in my usual physical state is really difficult. Especially in this town. the closest grocery store is 2.3 miles from my house. Not an awful walk, if I was good at walking, or able to carry enough groceries on my back to feed 5 people, like a pack mule. The bus system in Vegas is abysmal at best, and getting to the doctor, store, pharmacy has been challenging. Speaking of getting to the doctor, we get to talk about the next part of the update.
I got to ride an ambulance last month again! Weeeeeeee! I woke up in an extra special amount of pain. To describe it most accurately would be this. If you've ever broken a bone, you'll likely agree that the initial breakage hurts, but not like the deep throbbing you have the next day. We start with that kind of pain, add to it the sensation of pins and needles, like when your foot falls asleep, and then set that whole mess on fire. That is the most accurate description of the pain that I felt/still feel often. This pain consumed my left arm and hand and spread across my chest. I was scared witless. I tried to reach any and everyone I could think of to take me to the hospital, and finally just gave up and called 911. The type of Scleroderma I have can affect the heart. Also I'm diabetic. Double heart risk whammy. You don't take chances with pain like that. So off I zipped in the ambulance, surrounded by muscular firemen, to my usual hospital. Where they pretty much immediately decided I was staying and started the battery of tests.
Me wearing the ultimate in fashion. The blue hospital gown and coordinating telemetry monitor. |
My heart as it turns out is pretty ok. Leaflets of my aorta are mildly calcified, but not too much, not enough to worry about yet. But what they did find is that my spine is a hot mess. Especially the C6 and C7 in my neck, The ones my Dr told me can be affected by my Scleroderma. Basically, my nerves are being constricted by my own vertebrae. It bought me 3 days in the hospital. It wakes me up almost every night. On top of the other joint pain. It will get worse. I don't know that it can be fixed.
But it's not ALL bad news. My Go Fund Me has been a huge help. We aren't debt free, but we certainly dug a nice chunk out of what we owe, and haven't been evicted. We even still have electricity! And speaking of my apartment, the managers have obviously noticed that we are struggling. So they showed up on our doorstep with a box of Christmas dinner. I cried.
A lovely surprise supper. |
I am training to be a volunteer coordinator for the Have A Hart Day group in Las Vegas. I am hoping this allows me a way to still be involved in making the world a better place. Believe it or not, I wasn't studying to be a nurse for the gorgeous uniforms or glamorous hospital environment ...I wanted to help people. That hasn't changed a bit. I can hopefully coordinate from bed if need be.
Speaking of my RN schooling, I still don't know what I want can do there. I know working outside my home is off the table. Heck, working inside my home most days is off the table. But somehow, I miraculously maintained my GPA and am still financial aide eligible. So even if I don't know what I am going to do, I have the option to do something.
And now we come to the part where I get all whiny. Endulge me if you will. I need to get it out so I can get over it.
I am tired of being in this much pain. Other people get to live their lives, do normal things, I struggle for just the small things.
I know, I have a lot to be very grateful for. I AM very grateful for what I can do, and what I do have, and the support and love I receive. I know fully, that things could be a hell of a lot worse. It's why I give when I can, volunteer when I can and why any single one of you can count on me, to cheer for you, show up and support or listen to your troubles. That is not diminished by my pain.
But my pain is not diminished by those things either. I have never been an envious person. I never cared what the "Joneses" had. My grass is plenty green on my side of the fence.
Lately however, I find myself jealous of people. People who can sleep through the night without pain waking them. People who can plan things. People who can go enjoy the park. People who can wash their dishes without having to go lie down for a while afterwards. People who's family members don't have to worry if they are going to be "up to" things they want to do together.
So I apologize if I sound whiny. But I feel whiny today dammit. And I have been trying so very hard to be strong. That gets tiring.
And I am tired. Very, very tired.
Ok, I've said all I can say, and like it or not, you know know what I know. Such as it is.
Enjoy your New Year's festivities, kiss a pretty guy/gal/both/neither and let's bring on the next chapter of breaking our resolutions and seeing where 2016 takes us.
See you all next year. ;)
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