The Grinch that Stole my Christmas, and how I'm keeping hope alive in Whoville.

Ah, the Holidays!

That magical time of year when anything is possible.

Hooray!

Listen, I'm no Scrooge, but this year definitely isn't going down in my book of warm and fuzzies.

I have been trying my damnedest to make the year special. I know most of us have had a pretty crappy 2016. It may be a huge failing, but I have a larger optimism section of my heart, than I have a sensible portion of my brain. I've always been a believer in the Angel that gets his wings at the end of it's a wonderful life and the sad little Charlie Brown tree that just needs some love to make it beautiful.

It's not working very well for me. This year has seen so much loss and pain for so many people I love. And for me.

This is the first year I haven't had to wrack my brain trying to figure out what to give my Mom for Christmas. Because this is my first year without her. It has left an un-fillable void in my Holiday spirit. Usually this time of year was so hectic for both of us. While I was still working and she had countless activities she had volunteered to help with at her church, we'd usually make that after Thanksgiving phone call and figure out when the best day to celebrate together was. In my home December 25th is more of a suggestion than a hard set date for our Yuletide festivities. I've always said, "Christmas is when we get together to share it."

This year there was no phone call, no schedule conflicts. Nothing. I am trying to soldier on and make this as happy as possible for everyone, but it's difficult when you're not feeling joyful.

My body is also being completely uncooperative. I have a large cyst on my ovary, a smaller cyst on my kidney, a sharp pain in my side, arthritis pretty much everywhere thanks to the Scleroderma.

I know bitch, bitch, moan, moan.

I'm supposed to be Santa and make all of the Merry and the Ho Ho Ho and The Goodwill towards men, ect, but Santa has a full time elf crew, a loving wife to bake him goodies, a magic team of reindeer and one hell of an advertising firm in his pocket.

I have none of those advantages. I'm tired.

But what's that sound from down in Whoville?

It's the hope that I am trying to gently foster.

I am making gifts for the ones I love this year. It's a time consuming and tiring process, but I am happy with the results. I have been crocheting lots of things.

It's something my mother taught me. It's very centering, working away at my chains and stitches, remembering when she taught me. Thinking of my mom and how she always had a bundle of crochet with her to work on. She could talk to you, watch TV and whip up a blanket without missing a stitch. You could always tell when she'd need to concentrate on her work because she'd nod her head to acknowledge what you were saying while quietly whispering, "three, four, five" then she'd be right back with you.

Writing about it now causes the strangest pain. It hurts because I miss her so much, but I'm so happy to have that memory.

I'm also baking a ton of treats to give away. That's another skill to thank my Mom for. Even after I had my own kids and started baking my own cookies, she'd always bring a big tupperware of cookies for us. She'd always fuss and say they didn't turn out the way she wanted, but they were always perfect. The last week I got to spend with her, I introduced her to "The Great British Bake Off" and we binged the entire season on Netflix. This year as I try my hand at Mary Berry's Viennese Whirls, I'll be thinking of her.

Even with all that I haven't got this holiday season I am grateful. I have such memories to cherish. I have people in my life that care for me and my family. People to give crocheted scarves and cookies baked with love. I have my family, even if it isn't as complete as it should be. I am going to make it through Christmas.

So here we are, oversized optimism in my heart, and Boris Karloff in my head:

"Welcome, Christmas, bring your cheer. Cheer to all Whos far and near. Christmas Day is in our grasp, so long as we have hands to clasp. Christmas Day will always be just as long as we have we. Welcome Christmas while we stand, heart to heart, and hand in hand."

An Anxiety Tale

I know "anxiety" is a word that is thrown around quite a bit these days. Everyone has anxiety. Xanax is a bottle in many, many medicine cabinets.

Let me share a tale with you.

Yesterday I got a letter on my door from the apartment managers. 24 hour notice to enter. They are in the process of giving everyone new adjustable flow shower heads. This is a good thing right? Right?

Sure. But to me this is a trigger to a panic induced spiral.

Let me preface this by saying, I have nothing to hide in my home. I keep a pretty clean place despite my body not always co-operating. I have a high standard of clean. I don't use drugs, I am not a party girl, hoarder or murderer. You can show up unannounced and the worst you will find is my crazy hair and mismatched jammies.

So why is it that I couldn't sleep last night? Why did I rise at 7am and immediately start scrubbing the bathrooms as if the Pope was going to take a Holy tinkle in my toilet? Two guys, whom I have never met, were in my home for a total of five minutes. Why would I let that make me feel this way?

Anxiety. That's why.

You see, when have actual anxiety disorder, there doesn't have to be a real reason. Even things that are good things can cause actual physical discomfort. Tightness in the chest, rapid pulse, trouble breathing. You don't get to decide when it will happen, what will cause it or when it stops.

There is no rhyme or reason to it.

I have a ton of weird behaviors and and aversions because of my anxiety. I get locked up at restaurants, staring at the menu afraid that I won't be ready. Scared that the server will be annoyed by me if I am not ready.

I rarely call the maintenance team into my home to fix things. I have become quite the handy person simply to avoid having to "bother" people.

I have a defective Scentsy warmer. It doesn't shut off. I could easily ask to have it replaced, my Scentsy guy is a friend. I haven't. I wont.

I could go on, but I think you get the point.

If you know anyone who suffers from anxiety, you can best help by just being a safe place. Asking "Whats wrong?" or saying "Calm Down" doesn't help. We know you mean well. But if we could pin down what was wrong or simply calm down, we wouldn't have anxiety disorder. Just be there. Don't let us hurt ourselves. Don't let us become hermits. The tendency is to create a bubble and stay in it to avoid stressful situations. That's not healthy. Don't let us get away with it. That kind of help is worth so much.

Happy Birthday, Mom.

I sat down to write a loving tribute to my mom today, but the words aren't coming.

It is her birthday. She would be 68 today.

So many horrible people in this world linger on and on, my mom was wonderful, and she only got 67 years. Not nearly enough.

Speaking of not nearly enough, there are not nearly enough words to express how wonderful she was. Not nearly enough tears to cry to express the pain I feel without her to guide me. There weren't nearly enough hours spent together, for me to have gotten enough of her company. And there were not nearly enough times for me to tell her I loved her.

Happy Birthday, Mommy. There aren't nearly enough ways to express how much I miss you.

Sing it Rockapella! "Where in the Hell is Erica Sobrino?"

I try to be positive and not let myself sink too deep into the mire. I have been losing that battle. If I seem distant, if I don't answer my phone, if I don't make plans, please know it's not out of a malicious heart. I am hurting both, physically and mentally. Scleroderma is a harsh mistress.

It seems the days that I can get my head in the game, my body betrays me. Lately, I am having serious trouble even doing light chores. Walking to the mailbox with the pups is akin to climbing Everest for me at the moment. So I resign myself to staying in, day after day and the depression grows.

I am person who is terrible at being still. I chose a career that was go, go, go all day because I prefer it that way. When I am in situations that require staying in one spot, I fidget. A lot. If you've ever shared a couch, bench or bed with me you know I bounce my leg, incessantly. My busy soul, trapped in this vessel that won't cooperate, is restless. Agitated. Suffocating.

As of the moment I am writing this I have been awake well over 24 hours, with no end in sight. I can't sleep, there is no moment of comfort that will let me drift off into sweet slumber. I have taken Oxycodone and Ibuprofen 600. Nothing has any effect. At this point I think the pain is causing my adrenaline to go nuts, because despite being up since yesterday morning, I am wired. My blood sugar has been out of wack. It's all a mess in my little world right now.

I want to cry. The pain makes me yelp and wince suddenly sometimes. My pups usually rush over and protect their "wounded Alpha". But as much as I want to just howl in pain, and let my tears tell my story, I know it isn't fair to my pack. My husband, my kids, my menagerie, all share my life, my home, and my burdens. So I put on my stone face and I am here, writing. Hoping for catharsis.

This isn't a cry for sympathy. I know you guys care, and are here for me. (Unless you aren't and that's fine too, except I don't know why you'd take the time to read this depressing shit)

This is a request for understanding. A message to tell you, I still love you. I am sorry that I have missed birthday parties, baby showers, game nights, and I totally screwed the pooch with cooking club.

I miss you guys. I want so badly to have a houseful of laughing faces, playing board games and being subjected to MST3K. I want road trips to Disney, picnics at Mt. Charleston. Paint Nights. A cold beer and a bbq with great company.

But since I DO love you, I don't want you to have to worry. I don't want you to feel like you have to watch my step. (Sam, I'm looking at you at the night of the UNLV game, you were so sweet about the stairs and making sure I got up and down them)

It hurts to see the concern in your eyes when I am limping around. I can't help it though.

So please, try not to resent me. Try to remember I love you, even when I can't be there in person.

Team Hooman

As this is the end of Hooman Appreciation/Team Hooman Anniversary, I wanted to share what this community means to me.

I started out actively watching Ryon's stream just over a year ago. I had been off and on, but one particular day I was feeling really low and thought I'd pop in and just be an anonymous viewer. I don't think I had been in the stream 5 minutes before Ryon said "Butter-cup-er-ica is in the house" and then the chat started greeting me. I wasn't as anonymous as I had planned. And that was actually ok for once.

You see, I've always been pretty good at being nobody. The chunky girl that tried to fade into the crowd to avoid the bullies. The geeky girl who never really fit at work, at school, or pretty much anywhere else.

In Team Hooman, you have a very hard time hiding. People are welcoming, friendly and supportive. I can say without hesitation, that at anytime, I can count on my hoomans to be there when I need a bit of encouragement.

When my mom passed away this year, so many hoomans were there to offer me consolation, virtual hugs and tons of less than 3.

I look forward the streams and to talking to everyone in the chat. I look forward to conversations on Twitter.

I don't yearn to be anonymous in Team Hooman. I want to a part of things.

I want to thank all the Hoomans. Thank you all for making me feel welcome. Thank you for renewing my faith in communities and friendships. Thank you for being amazing.

On the subject of Purpose

"Efforts and courage are not enough without purpose and direction." - John F. Kennedy.

Finding ones purpose in life is something everyone of us struggles with. Some know from an very early age what they hope to achieve. Others are happy to drift through life from one purpose to another. Some are tormented trying to find a sense of meaning or purpose in anything that happens to them.

I was one of the "lucky" ones that found my purpose, my calling, as it were.

And then it was gone.

I started out at a very early age knowing that I wanted to help. I was a helper. A fixer. When I was very young I planned to be a doctor during the day, a veterinarian at night and a ballerina on the weekends. Big dreams. As I grew, it kinda scaled back to becoming a nurse. Still a big dream, but with a much healthier space left for a family and a social life.

Then I let getting married at 18 and having 3 kids during my 20s change my purpose again. Raising my kids and having a job that allowed me to not need a sitter.

Then everything came full circle again. After a bad marriage, a chaotic divorce, my kids reaching an age where they were capable of wiping their own butts, and getting my new blended family, um, blended: I finally found my way back to purposefully pursuing becoming a nurse.

Things were great. I went to school while I worked full time as a CNA. I managed to be an honor roll student. I was a veritable superhero.

Then we all know what happened next.

So here I am for the first time in a looong time, with no clear purpose.

Before, even though my purpose had changed, I still had a purpose. I still had a plan. A dream. A goal.

My kids are all well on their way to being capable and amazing adults. So their need for me has greatly diminished.

My husband doesn't need me to run his life. He is a smart man, a great cook, can wash his own clothes, and even remember people's birthdays without me reminding him. This is all fantastic, except that for a carer and fixer like me, it leaves nothing to "fix".

My career gave me purpose. It let be important. It let me care for people. It let me be a carer by day and have my nights with self sufficient family. Without it I have an immense overflow.

At first, I used this overflow to do some much needed self care. I finally did things that I had put off in favor of caring for others.

Then, when I was fairly satisfied with the amount of energy I had pointed at myself, I poured it into rescuing animals. I am quite proud of my mini menagerie. I know I have made a difference in my cats' and dog's lives. But there is far less energy needed even there now. The puppy is not a puppy anymore, but a housetrained registered service dog. The cats are no longer kittens. They have their hierarchy. And let's be real, aside from walkies, litter changing and feeding, cats and dogs both sleep 16 hours a day. I am sure I needed them, way more than they needed me.

So what do I do with my overflow now? I can't keep adopting puppies and kittens. Trust me I asked my husband (again) today. Thankfully (and frustratingly) he has way more sense about these things than I do.

The aforementioned kids are all teenagers. They come in the house and disappear into their rooms to do cool/sulky teenage things, just like I did at their age. They are pretty good at not starving to death too.

I have even tried volunteering. When you can't count on your body to let you keep plans and appointments, you are not very useful for volunteer work. Most places want and deserve a weekly or monthly commitment.

I am not a "lady who lunches", a religious zealot, a free and unattached back-packer trekking across Europe, or a rich trophy wife that can take the yacht out for a quick zip towards Cabo for a weekend.

So where is my purpose now? I am open to suggestions. Until I find it, I'll be here, browsing the animal foundation website, and cooing over the faces of puppies and kitties that don't need me as much as I want them.

Pain:Guilt ratio

I find myself today, like many days, at odds with myself.

Trying to sort through the pain to guilt ratio. That is to say, how much pain do I have to be in before I can stop feeling guilty for needing time to rest, or help doing things?

This guilt is not being imposed on me by anyone outside of myself. You would think being a logical human I could just "logic" it away. It does not work that way.

A logical person says things like, "Surely, I am as worthy as any other human, of kindness and help." "There are people out there who take things that don't belong to them with no guilt at all! Resting when you really need it isn't guilt worthy!"

I have been in such pain for the past week or so now that I have reached a point that is beyond reason.

In this place you are driven to insurmountable pangs of guilt and regret by simple things. Things like asking your daughter to walk the dog. Not driving your husband to work because your shoulders hurt so bad that the simple act of turning the steering wheel is excruciating. Laying in a dark room under the effects of oxycodone, which incidentally barely takes the edge off the pain but makes me loopy enough to be useless, is a capital crime.

Today I live at that point beyond reason. Today my husband told me they cancelled his second interview for a promotion he wanted. They cancelled it because of me. Last Friday I drove to meet him for lunch because I missed him. Pain and all. When he saw the condition I was in he left work early to take me home and take care of me. This act simultaneously made him indispensable to me, but a liability to them.

You can't imagine the guilt I feel. I am lying in the dark, loopy, in pain and feeling so much guilt that I have rendered myself useless in my own mind.

Everyone's life would be better without me today.

Depression is not a new symptom for those of us who suffer a chronic illness. Treating depression becomes part of a plan of care if your Dr is worth their salt.

But this guilt has a clear and reasonable cause. Action A led to Consequence B and Action A is all my fault. So what do we do with those types of guilt? When the ones we love are hurt because of caring for a chronically ill person?

So today I find myself on losing end of that pain:guilt ratio.

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.