Monday, August 1, 2016

When Life (Death) Isn't Fair

We all take this thing called life for granted. We say we're not going to, we say we're going to live in the moment and take life by the horns and all of those other cliche quotes but the truth is, we don't. We let one day roll right in to the next and we assume that things will be the same when we wake up the next day. We assume that we *will* wake up the next day.

People die. It happens, circle of life and all that. I've been to more funerals than I care to think about. I've buried so many my own age, starting before I was even out of middle school. It's never easy, there's never a proper way to say "I'm sorry" to a grieving mother, father, son, daughter, sister, brother, husband, all feels so hallow. We leave those funerals with a renewed faith that we are going to be different, that starting today no more skipping the ice cream or putting off that trip we swore we would take...and yet, it happens. *LIFE* happens. Life gets in the way of living, which really seems so contradictory but it's true. We can't just do what we want, when we want, because we have obligations and the world does not simply revolve around what we want to do right now. We have other people around that depend on us, that need us to be here with them, we have work that requires us to show up and so we put it off. We say we'll schedule it, we'll plan it, we'll figure it out and then those days turn in to weeks, months, years. If you're reading this you are probably going through your mental checklist of things you thought you'd do and haven't. I'd like to tell you to drop what you're doing and go, just go right now, but I won't. I can't because I would be a fraud. I can't tel you to do something that I know I won't do myself. I know that I'll go through the motions of my life today and tomorrow I will do the same. This life that I am living though, this is good. It's not adventurous or crazy but it's good and it's mine.

Then there something happens and there's a death that just knocks you down. Hits you so hard you're not even sure you can get up. I've watched people battle cancer and fight off diseases only to lose. I've watched as families cry over losing someone they loved dearly to addiction. I've watched as children try to process what is happening and that those people are gone for good. It's sad and it's a terrible feeling of helplessness but there's something expected in those cases. Not that we ever plan on having to bury the ones we love but when there is an outside force involved, even if you don't admit it out loud, you know there is a chance. When someone is living their healthy, beautiful, amazing life one day and the very next they're gone, it's not fair. It's not right. When the choice someone else made to live recklessly leaves a husband without his wife, a son without his step-mom, a father without his daughter and so so many others without their friend...what else can you say? This life...this's not fair. It's not expected, there is no way to prepare our mind, our body, our soul. There's no goodbye, there's no closure.

Sometimes in life we get lucky and we have those people that we know we can count on. We know that no matter what, no matter how often we talk, no matter how many months we go without talking, they'll always be there. They will answer your texts and your calls, they'll find the time to meet you for dinner, and if you need something in the middle of the night they'll answer and ask how they can help. We lost one of those people and while maybe she wasn't my best friend she was by far one of the truest. You knew you'd get a real answer from her, no bullshit answers, no telling you what you want to hear, there was only love, kindness, laughter, smiles, tears and humanity. These real life moments, these are the ones that make you second guess everything. These are the things that make you look at your life and wonder what the fuck is going on and how is this right? How is this fair? Some would say that she is in a better place, that she was needed somewhere else, that she is now looking over us...but what if that's not what we want? What if we'd rather she be watching out for us here? I want to be like her, I want to cry and then find a way to honor her life because that is what she would do for any one of us but right now? Right now I want to be upset, I want to cry and I want to hold the ones I love just a little tighter because it's not okay. It's not right and it's certainly not fair.

Friday, April 8, 2016

Thoughts on doctors...and patients.

It's been a crazy few months since my last post.

At the end of February my mom and I spent the afternoon doing some shopping and then decided to take the kids for a walk. We live close to a path that gets us right in the heart of our little downtown. It's about a 2 mile walk and once we're there we get ice cream. About halfway my mom mentioned that her hip was starting to bother her. We took it slow and stopped a few times along the way. I let my dad know that he'd need to pick her up from downtown instead of my house so she didn't have to walk back. Her hands started to swell and we stopped a few more times before reaching the library.

As I'm walking towards the library she stops at the corner and looks around, confused. If you've met my mom, you know that she's no stranger to being confused. She definitely has good days and bad days (don't we all!) but this was different. She looked right at me and told me that she needed to find her dog. When I asked what dog she was looking for she got more agitated and started asking for Columbo.

Columbo has been gone for years. They had him put to sleep when he was 18 years old, deaf and blind. I was probably 9 or 10 at the time. (it's okay, I'll do the math for you, it had been nearly 25 years). After some tears, and me trying to keep the kids from really paying attention to what is going on, my dad finally picked her up. I gave him a quick update as she was still upset and wanting to know if he was going to help her find her dog.

Sunday goes by and she's okay. Tired, stays in bed most of the day but okay.

Monday I go to work and I send her a message (she loves her some facebook messenger!) to ask if she'd called the doctor. She replies asking me why and that she wants to go out and find her dog. I'm trying hard to keep it together and I call the husband to ask him if he can go over and check on her.
**Quick side story, as he's pulling out of our neighborhood to check on her, he gets pulled over for rolling through the stop sign at the end of our street. He told the cop his mother in law was having stroke like symptoms and he was in a hurry, the cop asked where she lived and in true hubby fashion he couldn't remember the name of the street but told the cop he could follow him and give him the ticket when he got there. I swear, this shit only happens to him! The cop let him go and did not follow**

So anyway, he gets there and she's all upset because she's trying to make a smoothie and she can't do anything. Her hands just won't work. She can't open anything, she can't peel her banana, she has zero strength...AND she's still looking for her missing dog. I called her doctor and they sent us straight to the ER.

This is where the fun begins. I'm going to start, before I lose you in the even longer story, by saying do not be afraid to ask questions, questions and more questions. Do not be afraid to ask for a second or even third opinion. Do not be afraid to second guess what someone tells you. I've always felt that doctors should be trusted. They're human like the rest of us but they're really smart humans that went to school for a really long time. They should know what they're talking about and should be trusted...and I do still believe that...but I also believe that they're only human. They can still make mistakes, they can miss something, they can maybe not feel like dealing with the messy unknown that day. You know yourself and you know your family. Speak up. If you don't like what someone says, if you don't agree with a treatment plan you have EVERY right to say no or to ask for someone else.

So here goes. My mom spent over a week in the hospital. She was admitted February 22nd and released March 1st. I saw her every day, I talked to every doctor. She had an entire team of doctors checking on her. Most of them I felt did a really good job. She had some great nurses, she also had one in particular that she didn't care for. He worked at night and he wasn't as gentle with her while helping her walk to the bathroom. You see during all of this my mom, the same woman that was out closing the bar and dancing the night away just a few weeks before this, could not get out of bed and walk to the bathroom on her own. Even with a team of doctors and every test imaginable we heard the same thing over and over, "we're not sure, we don't know, we're going to run more tests"
Finally, at the end of that week all they could come up with was an autoimmune brain disease. This lead us down the path of needing a rhuematologist. Unfortunately nobody local could see her while in the hospital, they only handle out patient. I asked a lot of questions but even looking back, I should have asked more. I should have pressed more. So many little things were missed, so many things were wrong and while it may not have made a difference, we need to be the voice for ourselves and for those that can't be the voice for themselves.

She was released and put on a hefty dose of steroids. I know from her being on them before that typically it's not long term. They always give you instructions to ween off of them, except this time they didn't.

Now we're home and it took some juggling and some craziness but we have a routine down. She can't be by herself because even though my dad installed hand rails in her bathroom and made it so she can get out of bed on her own, she can't really care for herself. She can't make herself food or get around easily. So at 7am my dad brings her over to my house where she hangs out on my couch coloring and watching tv. I work from home and spend my day running between my phone/computer and her downstairs on my couch. I work until 3:30 and then it's homework and chores and dinner. My dad gets to my house around 6. Sometimes they stay for dinner, sometimes they head home. By the time my dad gets her home and settled it's probably close to 8pm. Needless to say, we're all tired, but we're all doing exactly what she would be doing for any one of us in heart beat. It would never cross my mind to NOT do this.

Our first trip to a rheumatologist was a total waste of time. I'd been warned that the local doctors are just not familiar with these rare diseases but it was the first one we could get in to. We'd tried Cleveland Clinic, OSU even U of M. Everyone had waiting lists...waiting lists that went in to June! This was early March, June seems so far away. The unknown is scary. Feeling like maybe this is the new normal or maybe this is just a chapter in this book that will have a crazy plot twist next month is not a fun place to be. This doctor that we saw hadn't even read her chart before we showed up. She sat with a stack of papers, at least 2 inches thick, and went through them while we were in the office. She kept telling us that nothing appeared to be lupus, which we knew, but I guess because the orders from the primary doctor mentioned lupus that was the only thing she was looking for. She never once mentioned the memory loss. My mom can't remember dates, can't remember the vacation we took last summer, can't remember her own phone number or even her anniversary. She knows her family, she remembers things from high school but couldn't tell you what year it was. At one point towards the end of the appointment she told us she was going to run a few more very specific blood tests but if they were clear we didn't have to come back. I am fairly certain the look on my face was something out of a cartoon. This is a doctor, and not just any doctor, a highly sought after specialist. Here is the woman that is clearly sick and we're telling you that this is not her normal. She might be 65 years old but she is not an old lady. Do not tell me that simply because the test results that we already have copies of from the hospital do not show lupus and shove us out the door.

I do not speak up much, I'm much like my dad and I'm very closed off in a lot of ways. I asked her what we should do if we're not supposed to come back. I asked if she could give her instructions to get her off the steroids since I know the doctors at the hospital put her on them simply as a bandaid to get her home so that rheumatology could take over her care. In a nutshell she told me it wasn't her problem, we'd need to follow up with Neuro and we'd need to talk to the prescribing doctor. It was by far the worst appointment I'd ever been to in my entire life. I'd never left an office feeling like a doctor didn't want to help the way I did that day.

I swear I'm getting to the end of this post, even if you've read this far. It's a lot, I know, and I'm not going to lie it's just as much for me to remember how it all played out.

After that I finally reached out on Facebook. I hadn't posted a whole lot about what was going on but I needed help. I asked if anyone had any kind of a connection because we needed a new doctor, a good doctor, and the idea of waiting another 2 months to see someone made me fall in to a bottle of wine and a box of chocolate. (true story) Among Cthe comments was a friend from high school, she said that she knew someone at OSU and she was willing to see my mom. USE YOUR RESOURCES. So much is about who you know, do not be afraid to ask!! It took some time but I finally managed to get her appointment scheduled (to give you an idea, the first available was June 15th!) however the Dr put a note on the chart approving a bump. We went yesterday. Every person we came in to contact with was so nice. They went over every detail of mom's history, her care, what was going on now, how it all started. They asked a ton of questions. When the Dr came in and was talking to my mom and to us I literally almost cried. I wanted to cry because some of what she was saying was scary shit and because she had been in the room for 10 minutes and had done more than any doctor we'd seen over the last month. We walked out of there with instructions on a second opinion from Neuro (which they've already called and scheduled, we go back on Monday), more blood work, forms on getting details from her other doctors on a previous autoimmune diagnosis...but what the most important thing we walked away with was a feeling of (FINALLY!) not being alone in this.

All of this to say: Fight. Do not accept an answer that does not sit well with you. Do not ignore the voice in your head that tells you there has to be more. There has to be someone that is willing to put in the work and ask the tough questions. Find that doctor. Find that person. It could, frankly, be a matter of life or death.

I am sure I will have more updates, hopefully none quite as long as this, as we walk this very long road.

Tuesday, February 2, 2016

To The Little Old Lady at Grocery Store

Thank You.

Thank you for stopping me while I was bagging my groceries to tell me how much you liked my hair, thank you for telling me how beautiful I was when I turned around. That smile, that was genuine.

Unfortunately, I am terrible at accepting compliments, I never know what to say aside from my cheeks turning red and saying Thank You. I assure you though, you made my day.

I'm not going to lie, as a redhead I get comments on my hair all the time, always have. Yes, you'd think I would be used to it after 35 years, I'm not. This was different, and let me tell you my pony tail was not all that fabulous today! This, this was kindness from a lovely older woman that had her own hair perfectly curled and her make-up on and I wish I hadn't been so flustered at the time and could have told her that. I wish I could have told her that she was the sweetest and made this tired on the verge of a nasty cold mom that didn't want to be out of bed much less grocery shopping feel...beautiful. This isn't a search for compliments or looking for "oh of course you are", that's not the point of this post at all. My husband and my friends must abide by the unwritten code of agreeing. This is just a public thank you to a woman I will never see again.

As for everyone else, let's try to be more like that little old lady. Let's try to stop people and compliment their shoes, their hair, their well behaved kids. So many times I will be behind someone at Starbucks or Target (where else would I be?!) and think "wow, they look adorable" but I don't say anything. Why? Why do we keep it to ourselves? Let's share the beauty and share the love, you never know just how much that one little sentence could mean to someone that day.

Saturday, January 9, 2016

Walk down memory lane

Aiden's birthday always makes me think back to when I first found out I was pregnant. We'd been together 3 years, we were living together and even though we hadn't talked about it, I think we both figured this was it. I honestly don't remember what I felt back then. I was happy, I was busy working multiple jobs, I was just enjoying life. What I do remember is buying a test after work and going home to take it. I don't remember which job Jared had at the time but I know he got home really late. I want to say maybe he was baking muffins for Perkins and worked some kind of crazy shift. I know that I set my alarm that night for work and went to bed. When the alarm went off I got out of bed and called off sick, then crawled back in and waited for him to wake up.

When he finally woke up I remember telling him and crying. I didn't know what we'd do or how he'd take it. We were young, we didn't have a plan for the future, we very much lived in the moment. In that moment though, and the following minutes, hours, he showed me just why I fell in love with him. Why it was going to be okay. Why I could spend the rest of my life with him by myside. He pulled me close and kissed my head "why are you crying? Isn't this supposed to be a happy thing?" I laughed and hugged him as tight as I could. From that day on, it was a happy thing.

Our life hasn't always been perfect, we've had our share of ups and downs but we've always had each other. No matter what we always know who has our back. I look at my now teenager and he's so much of the good in both of us. He's kind and considerate, he's loyal and trustworthy, he's funny and sarcastic. He's my baby and he's taught me so much about myself, about the mother I want to be, about the friend I want to be...about the person I want to be.

I can't imagine my life any other way. People say that all the time and it sounds so cliche but it's so true.

happy 13th birthday!