Just keep swimming?

Today is a day of crap news. Every time I open my email, bad news. I won't share all of it, but I will share this.

So, in order to get the financial aide I need to graduate, I have to pay $403 to the college immediately. I do not have this. Last semester I was dropped from a class because on February 1st, my world stopped for a while. That's when my Mom passed. By the time I was ready for my world to start spinning again, it was too late.

This is my own fault, sure. I chose to mourn. I fell to pieces instead of stoically pressing on. I am weak. I lost one of my biggest cheerleaders and best friends. Stupid me, I let it effect my status quo.

This, to me, is the epitome of the way the world works.

There is no time to mourn. Bury your dead and get back to the grind or else. We have no time for your tears.

The weak of body are left behind, regardless of their other strengths. People get so angry if you walk slowly, or can't pay fast enough at a grocery check out because your fingers can't grasp your debit card or cash. Ugh what is wrong with her?

We cast judgemental glares at parents when their autistic child has a meltdown in public. Why would they even bring him out?

You're depressed? Cheer up all ready! You have a mental illness? Take your meds and be normal like the rest of us!

We hide our elders away in nursing homes. Who wants to deal with their incontinence, forgetfulness and weirdness?

I've been told, and it's probably true, that everyone fights to keep up. Everyone fights their own demons.

If this is true and we are all suffering, why do we perpetrate this broken lifestyle?

Why do we get angry with or shun our stragglers, when we are struggling too?

I have have no clue if I can fix my mess with school. I lost my job because I was hospitalized. I can re-apply when I "feel better" which is probably the most insulting and hilarious thing you can say to someone with a chronic and incurable disease. There is no better.

It's just another example of the mess we tolerate. Why take time to understand something, when you can brush them off with a "Hope you feel better!"?

I refuse to tolerate it anymore. I'm taking a stand right here and now. If you are struggling, if you are alone, lost, left behind, if you don't know what to do, I am here. Reach out.

Because despite the filth and depravity of it all, my circle is good. I have good people hanging on to the shreds of goodness they can find. And even more so trying to be a bright spot for stragglers like me.

I may be struggling too, but you can be in my circle. I love my circle.

You aren't alone.

A Thank You

I know a lot of my blogging is pretty grim, but I am going to flip the script and show some appreciation to one of the people who make my whole world better.

In 2007, I was freshly single, a mom of 3, and still pretty overwhelmed by some of the changes that I had made in my life. They were necessary changes, good changes, but change is always a messy and scary process.

My friends had been my salvation. They helped me so much. Helping me with my kids, helping me move, making sure I took time to eat, sleep, breathe.

One friend in particular was Jorge. He and his mom helped me find my own place, and he had babysat on more than one occasion.

One day he called and asked me what my plans were for the 27th of March. I was off work but still in the process of moving. According to Jorge, that could wait for a night. His best friend had 2 extra tickets to Spamalot. They wanted me to come with. He knew I was a huge Monty Python fan, and I needed a night out.

I said I couldn't. I didn't have anyone to watch my kids. Jorge had already thought of that. His mom was ready and willing to babysit. Everyone was going, it would be fun and it would save his bestie from having to go alone with his room mates. Plus he wanted to see me be happy.

So I agreed to go.

Since I was bringing the kids to his Mom's house, we agreed I would drive Jorge and I to the show.
We made our way to the Wynn. When we got there, Jorge's best friend, handed him two tickets and said, "You owe me your first born." I thought that was odd. Then I found out why.

Everyone was there, as advertised. But Jorge and I had seats in a completely different section. Sneaky, but pretty damn smooth.

This would turn into what would forever be our first date.

It's been quite a few crazy years since then, but one thing that hasn't changed is that I can always count on Jorge to make sure I am ok.

He calls me every break he gets at work, and makes sure I'm feeling ok. He makes sure I take time to breathe. He worries about me. I can see what my illness has done to him. He goes through everything with me. But most of all he just wants me to see me happy.

And I am happy.

So today, on the anniversary of our first date, I want to say thank you.
Thank you Jorge for showing me that I deserved to have fun.
Thank you for showing me that I am worth the extra effort, just for the chance to sit alone with me.
Thank you for making sure I take time to eat, sleep and breathe.
Thank you for checking on me every single break at work.
Thank you for holding my hand.
Thank you for the butterflies I still get in my stomach.
Thank you for being there not only for me, but for our kids.
Thank you for the happiness we share.
Thank you.

Always,
Kitty

Welcome to the s%^&show!

The best laid plans of mice and men..... ~ Robert Burns

So a quick update.

As of yet, I have still not heard from disability. Am I surprised? No. Disappointed? YES.

I've worked in one capacity or another since I was 14 years old. Summer jobs through Nevada Business Services, food service, retail, management, pharmacy, healthcare, you name it, I have done it. I have never been a "sit on my duff" kinda girl.

But now that I need help from the system I have paid into, I'm boned. No surprise there. Contacted attorneys and was told that until they officially deny me, no one will take the case. Not surprised there either.

But I had planned. I am not a creature that drifts aimlessly on the wind.

The plan was to use what was left from our taxes to get through until the disability came through. They owe me quite a bit of back pay. Catch up on bills, re-budget and live a decent stable life. As much as can be had between hospital visits, specialists and surgery consults.

But that didn't happen.

So I sought out a back up plan. I got a job. I can't get out of bed many days, but I got a job. I plan to work it til the wheels (or my arms) fall off. I will not fail my family.

I contacted a wonderful group here in Henderson, Hopelink. And had a consultation. My case worker looked at everything and couldn't believe we had waited so long to get help. She set us up, so they would pay what were behind on and get us stable til either disability or more income happened. We filled out applications, made future follow-up appointments, and took a drug test.

Fast forward a week. My apartment manager has been completely unavailable to the ladies and gentlemen at Hopelink. We (me, my husband and a case worker) finally spam called the office til we reached the property manager. She said to fax the papers and she'd send them back. We waited. Called 3 times again, finally reached the property manager. She said she had to ok the forms with her corporate office, but it wouldn't be long. Then we waited some more. Finally, we went home and our case worker said as soon as she got the paperwork back she would cut a check.

Finally I called the manager, AGAIN, since the case worker called me again. She said that they still would not send anything and further more they would not accept a check from Hopelink. A. because rent is late and B. because it is a third party check.  These are stated in my lease, however, not accepting a third party check from a established trust excludes people who need help.

I don't know what world they live in, but no charity is handing out money orders or cashiers checks to people to turn over to their landlords. They'd be taken to the cleaners by unscrupulous jerks. They establish a trust and write checks directly to landlords, so that when people who aren't trying to milk the system need help, there are funds to help them. By not accepting the funds, that are sitting on go, ready to be paid, they are forcing me into an eviction. One I did everything to avoid.

I am faced with my only option being working with Hopelink to move us. I hurt in nearly every joint of my body, and I have to pack up everything. I am facing a surgical consultation tomorrow and a cancer specialist next week and I am losing my home base. I did everything I could to keep it. I worked every plan I had. I had back up after back up.

The best laid plans of mice and men.....

The Hard Choices (trigger warnings: death, mourning, loss)

*Forewarning, this will be a long blog. If you need a TL:DR- Learn CPR, Have a Living will/DNR, Make arrangements for your last wishes, because your loved ones will need you to*

Oh man. This won't be an easy blog to write.

Then why write it, Kitty? I mean, you're not paid for this. It's not as if you have droves of fans hanging on your every word.

True. But the reason I started writing was as a catharsis. A way to get these things out in a (mostly) organized fashion. This is collection of my fears, frustrations and often pedantic ramblings. A way to cope with my drastically shifting reality.

And brother let me tell you, this shift is gigantic. It's time to let this out into the ether and hope in some small way, it can either provide me some peace or help someone else find theirs.

Sunday, January 24th was a lazy morning. One of those rare days where you've got nothing on your calendar. The kids were at their dad's house and I was still recovering from a fall that had badly sprained my knee. The plan was a quiet day with my leg up on some cushions and some heroic deeds in Thedas. (I've been playing Dragon Age: Inquisition)

I was just shuffling through my kitchen preparing a very late breakfast for me and the hubby when my baby sister popped up on my phone. This time instead of her usual friendly greeting, I was met with mostly unintelligible wailing. My sister is not a crier. This was bad. I could barely make out what she was trying to tell me. Something about.....mom.....heart stopping.....ambulance....I tried to calm her. I told her I'd find out all the details and call her back.

Everything stopped. I was extremely worried but I went into a stone calm. It was time for action. I eventually found where the helicopter from Pahrump (the small town she lived in, about 140 miles from Vegas) would be taking my mom and I went.
I waited at that hospital for what seemed like an eternity. Finally, they told me she was there. I went back. I expected to find my mom, tired, grumpy that we had made such a big fuss, but ok. That was not what I got. She was sedated, she had a ventilator and she wasn't doing well. It was a waiting game now.

That waiting game evolved into a week long waking nightmare. My sisters both came from their homes out of town. It is one of the worst things we have ever faced.

I've always been a terminal optimist. I was SURE that she'd wake up, be super pissed at us for all the trouble and life would go on. We needed her too much for her to go.

It was Mom's wish that she not be allowed to be kept alive, dependent on machines. Eventually it became clear that she was not going to recover, and we moved her a hospice. On February 1st, 2016, just a few hours after the last time I had gone to hospice to kiss her and tell her I love her, she passed away. She never felt any pain. It's the only comfort in any of this that I have.

Since then it has been an up and down ride. Kind of like being on a small boat. I'll be going along and then suddenly the waves will dip and some small thing will remind me she is gone. Then the crying. For some reason, despite watching many families go through this in my job, I imagined I'd cry inconsolably for a week or two and then slowly start to feel better. Instead, for me at least, it has been a lot like normal life, until there is some reminder that she is not there. I'm doing normal things. Trying to keep my normal routine. Then I'll get to the point in my normal routine where I would call her, or text her something. Then it comes rushing back. Then the pain is fresh again. I'm told that's how all this works.

The point of this isn't to simply recount the details of my loss.

I want to also express a few things that have been festering.

First and foremost, learn CPR. Learn it, know it like the back of your freaking hand, know how to do it properly, and use it. My mother could have had a different outcome had anyone in the dollar store where she had collapsed given her immediate CPR. She waited with no blood flow to her brain for at least 10 minutes before the ambulance arrived to the rural area she lived in.

But..but..Kitty, what if they have a DNR, what if they don't want CPR?

Unless they are wearing something clear and visible that says that, or someone tells you not to do it, you are protected. An unconscious victim at the scene of an emergency implies consent. Do CPR. Let them be pissed off at you, let them sue you, you are protected.  The Good Samaritan Law in general states:

"Any person who in good faith renders emergency care, without remuneration or expectation of remuneration, at the scene of an accident or emergency to the victim of the accident or emergency shall not be liable for any civil damages resulting from the persons acts or omission, except for such damages as may result from the persons gross negligence or wanton acts or omissions."

Basically, if you know CPR, render emergency care in good faith and with no intention of being paid or rewarded you are protected. It makes me absolutely sick to know that there are people out there that won't learn CPR simply because they don't want to risk being sued. Furthermore, there are employers that will fire you if you render aid to a customer or coworker, because they don't want the liability.

Integrity is doing what is right because it is right. Even if no one else knows you could have helped, you would know. And if you could help and didn't, I would hope any small shred of integrity you had would haunt you the rest of your days for your inaction.

Secondly, if you have specific wishes concerning life support, what constitutes acceptable quality of life after accident or injury, or who speaks for you, should you be incapacitated,

WRITE IT OUT IN A LEGAL DOCUMENT!!!!!!

Guess what y'all, humans by and large lead with our hearts before our minds.
My mother had told my sisters that she didn't want to live if she had any diminished quality of life. I didn't not have this conversation with her. And even if she had told me that, what exactly is a diminished quality of life?

That is a HUGE gray area. Some would argue that my current state constitutes a diminished quality of life. I can't work, I sometimes can barely get out of bed. I live almost every single day of my life in physical pain. Pain that some people would not choose to endure. At this very moment, my arms feel like they are on fire and my fingertips are throbbing with each key stroke. The lifestyle I was used to living is certainly diminished compared to what I had before Scleroderma. Does that clear me to end my life? I don't think for a minute it does, I have people who need me, I am still capable of adding to society and my family, even if it isn't the way I did before. I don't feel diminished in the least. I also have hope that at some point we can find the magic bullet to change my daily life.

Furthermore, I have cared for people who have had no control over their body aside from their mind and their smile. They were not diminished in their eyes. I had to bathe them, lift them, dress them, wipe their face. They had tubes to feed them and tubes to help them breathe. But they also had beautiful smiles, laughter and joy. To them, the things that mattered had not diminished in the least.

I understand that to each person, that is a choice, and you have a right to that choice. I believe we should die with our dignity intact. We should live a meaningful life. So, if you know for sure what you can and cannot endure, what you consider a life worth living, write it down. Don't just tell your spouse, partner, children, ect. WRITE IT DOWN.

Because when you are standing there, watching a chunk of your heart hanging on the precipice of life or death, no matter what you know, no matter how much you want to respect their wishes, you will want to hang on to them more. Your loved ones will feel the same way. It's selfish. But all of us are capable of selfishness when it comes to facing a loss like that.

My Dad always says if he ever collapses clutching his chest, we are to wait 10 minutes then dial 912. I can only thank every power in the universe that if that happens I will most likely be 2000 miles away. Because I don't think I could do it. I know what he wants. He has the right to what he wants. But my heart will die that day. Just like it did on February 1st, when I lost my Mommy. He knows that. So he is going to make sure he has all of his wishes, including his DNR, written out and finalized. So we don't ever have to make that choice.

Finally, as morbid as this sounds, set up your final arrangements. I know none of us wants to think about dying. All of our instincts are built towards survival. But I hate to be the one that breaks this to you kiddies, none of us survives. All of us will die. Every single one of us. You. Me. Our best friends. Everyone. Eventually. And we don't get the luxury of knowing when or how in most cases.

Funeral homes are businesses, just like any other. As much as we want to believe that no one would ever take advantage of the sadness, mourning and sentimentality of a grieving family, guess what? They don't work for free. And again we run up against that emotional attachment issue if you leave it your loved ones.

We walked into the funeral home knowing my mom wanted a simple cremation, nothing more. But I'll be damned if they didn't try to talk us into having her buried in the Veteran's cemetery, "so we would have a place to visit her". We had told him even before our appointment what we wanted, and still he tried to talk us into something more expensive. Even the simple cremation wasn't simple, there are choices of what kind of vessel for the cremation itself, what kind of vessel for after, and the list goes on.

There are services and ways that you can not only choose what you would like done when you pass, but you can prepay, so that your family doesn't have to. Do this.

Whether or not your family honors the kind of service, or lack thereof, you want after you pass, you have very little control over. Whether or not you know if they honored your wishes or not, is a matter of debate that is certainly not a debate to have here.

But you can take care of some of the decisions and cost of your final preparations for the people you leave behind.

Giving them more space to do what they will really need at that moment, which is to learn to go on without you.

I know this was long, and not particularly cheerful. But I feel it is important. Not just for me, although it is good to have gotten this written out and off my mind in a semi organized fashion, but maybe for someone else.

If it helped you, I'm glad. If it made you think, I'm happy. If it bored you to tears, remember, no one is paying me to write this.

What dreams may come.....

Hamlet:
"To sleep, perchance to dream-
ay, there's the rub."

I'll admit, I have always had a love/hate relationship with sleep. 

When I was a kid, sleep represented missing out on all of the cool stuff. I was throughly convinced that the best things, in all the universe, had to happen after bedtime.

As a teen, sleep became amazing, and as a mother to young children it was like a mythical animal I only half remembered from a fairy tale.

These days, sleep is quite like a fearsome monster guarding a tower in which I am trapped. A tower that happens to be surrounded by ravenous owlbears.

Let me attempt to frame this picture for you.

This tower represents my waking hours. It's ok as far as towers go. Diversions to be had, nourishment, even company to enjoy during the day. Certainly liveable, and I daresay even nicer than some other towers. Then the night comes. Everyone leaves, the dishes are washed and entertainments put neatly away on their shelves. It becomes cold, lifeless, lonely.

I should have followed everyone else out of the tower. They've all gone to a cozy warm place. But I was afraid and now there is a terrible guard at the door.

He goes by many names, depending on the night. Anxiety. Insomnia. Pain. He's one mean son of a bitch. "They make things for those kinds of monsters!" you say. Sure, I could smite him with the "Hammer of Xanax" or run him through with the Sword of Ambien", but he's not just keeping me in, he's also keeping the owlbears out.

The owlbears outside the tower are what happens when I do sleep.

Sometimes, they are gentle. They wait for me to slip out and just when I think I am safe, they scoop me up and throw me back in the tower. These are the nights where I manage to fall asleep but only for a little while at a time. Then I wake up, vaguely uncomfortable or needing water, or to pee because of water I had earlier....ect. I can pass a whole night with very little rest at all despite having "slept" all night.

Then there are the nights the owlbears attack me full force with no mercy. These are the nights when I escape the tower and go to the land of sleep. But when I get to sleep, I am awoken very soon by that excruciating pain I have told you about, that runs down my arm. Or by the horrible throbbing in my joints.

My only defense is to run back to my tower, and let the monster keep me in. I pace back and forth, I take boiling hot baths, I blog. There is not sleep on those nights.

It's such a weird place to be, between my tower and my monster.

I miss so deeply, sleepy weekend mornings, rolling over to see my husband just waking up himself. Spending quiet snuggling hours just laughing and talking after a good nights sleep.

I miss afternoon naps, when the couch turns into a paradise and you slip away on an unexpected journey to dreamland.

Instead, most mornings I am awake way before anyone else. My hubby wakes up looking for me and asking if I got any sleep at all. My kids tell me that I should at least try to go back to bed.

A nap has gone from being a luxury to a punishment. If I lay down and nap, the rest of the day is shot. No recovering.

So the next night you snuggle down to bed, excited to dream about Channing Tatum or Scarlett Johansson, enjoy it. Relish it. Appreciate it. I'll be fighting off the owlbears.

Adios 2015

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.

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.

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. 

 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. ;)