I GAVE UP

Last weekend, I woke up feeling like I’d been hit by a truck. Not the first time I’ve felt that way, since I’ve been living with rheumatoid arthritis (RA) for over 20 years. But after a few weeks of really struggling with it, it got the best of me. When you wake up, ready to face the world and RA throws a wrench in your engine, it’s a real spirit killer. So, I gave up. Done. I was tired of trying and tired of holding on to a hope that never pans out.

I. Gave. Up.

For five minutes.

I ugly cried, sulked and felt incredibly sorry for myself.

Then, I was over it. Surrender really doesn’t look good on me. So, I picked myself up, wiped off the tears and decided to forge on.

You see, every single day, I wake up hopeful. Hopeful that today will be easier than the last. Today, maybe I won’t be in excruciating pain. Today, maybe I can type like a normal person. Today, maybe I won’t drop things randomly when my hands go limp or lose strength. “Tomorrow might be better,” I tell myself as I slide into what should be peaceful slumber, but that doesn’t happen for me like it used to. Every single thing I do is some sort of challenge that I have to overcome.

RA comes with built-in challenges. I don’t think there have been more than a handful of days that I’ve actually felt “good” in 20 years. It’s a vicious disease and a silent one. Unless someone is physically giving you the once over and sees a few swollen fingers or limping there’s nothing to see. It’s internal and it wreaks havoc on your body. RA is a very different animal from osteoarthritis. RA is an autoimmune disease and affects much more than just your joints. It is systemic and, in addition to joint damage and chronic inflammation, it can cause inflammation in both organs and tissues. There’s no rhyme or reason why one day you’ll feel ok and the next you feel like hell. There is no cure, there is only disease management. And the journey to finding the right medical cocktail, diet and exercise combo is a daily commitment.

I guess the whole point of me even writing this is to give some insight to those who don’t understand this disease – or any silent disease for that matter. People like me smile, put on a great front and never really let on to just how much we have to endure. Complaining doesn’t serve any purpose for improvement and no one really wants to hear about your struggles anyway. They really don’t. And I don’t blame them. I don’t want to hear anyone constantly complaining, either. That kind of negative energy is bad, bad, bad. But, I digress. Point is, it’s okay to feel the way we do and it’s okay to communicate how we are feeling to others. You can’t handle everything by yourself 100% of the time.

Having the right support system is crucial to our state of mind. Reaching out to a loved one or friend or even a higher power is the one thing that can brighten a particularly awful day or moment of resign. Support, for me, is as important as medication, because it feeds my soul and gives me that human connection of understanding and love. It lets me know I’m not alone.

Dealing with any chronic disease is bound to be an emotional roller coaster. That’s just a part of life that you get used to. But, the human spirit is quite amazing. We do things we don’t want to because they’re necessary. We fight, even when we want to wave the white flag. We cry through the bad times and let it all out only to power through again to another build up and eventual release. It’s a never ending cycle. But having people by your side helping you push through is incredibly important.

I am so fortunate. I have an AMAZING partner – my much better half -  that helps me beyond all measure. She’s quick to recognize a need, even when I don’t ask. But, she doesn’t jump up to assist me every time I have an issue. She lets me work through things I can and helps with things I can’t. If she ever gets tired of helping, you’d never know it. She never complains and is always encouraging, even offering up some tough love when I need it the most. She’s the world’s greatest! But, I’m a little biased….

The moral of the story is, if you are dealing with something that seems way bigger than you at times, find someone you trust and reach out to them for support. No one can really know your struggles unless you tell them. And I know you’re tough and you’ve got this, but every now and again it’s nice to have someone to lean on. We are all connected. What are we if we can’t be here for each other when we need it the most?

And if you’re reading this as the support person for someone who is struggling with a silent, chronic disease, thank you. Thank you for being their “person” and for wanting to understand just how much we shoulder every day.

Be good to each other. We’re all we’ve got.

Time for 2018!

As we look straight down the barrel of 2018, I think we should all take a moment to remember what 2017 was like for us. Whether you found yourself wasting oodles of time debating politics on social media or found great success bringing your small business to online marketing, take the good, throw out the bad and set your goals for a new year of opportunity.

You don’t really notice when you’re in the moment, but social media is a huge time suck – even when you are just “checking in” on everyone. I personally found myself wasting a lot of time on social media, then realizing I was wasting time, and pulling back from it all to reclaim my time. It was quite liberating. I was able to get things done that were previously put off. I was able to catch up on some reading. I had more time to decorate for the holidays. I had more time for my family. I had more time for me. And those things have immeasurable value. In fact, the few months of pull back was so successful, I plan on pulling back even more this year. You can too! Set limits and stick to them! You will be amazed at how good it feels!

I know that social media is a great place to reconnect and have healthy discussions on a variety of issues or causes. But this past year has felt more like a social media war. 

Pulling out the positive.....people seem to be more engaged on the important issues. Discussions are good, but when they cross the line, know when to get out or find common ground before losing a friendship that is certainly more important than politics. 

The irony of posting this on social media is not lost on me.

As for me, I’m going to use all of my extra time to write more, play more and maybe even discover a new hobby or start a new project.  I’m going to finally start working out on a consistent basis (she says!). I really am going to try! I know if I just get started – make that first step – I will be better off for it in the long run. I may not be there yet, but I’m closer than I was yesterday.

Stay positive. Think positive. And cheers to a healthy and successful 2018!

No More Bacon

I’m turning 46 in a couple of weeks. I’ll be less than a handful of years away from a half-century old. Maybe I should say a half-century YOUNG. I certainly don’t think of myself as old. But living with rheumatoid arthritis (RA) makes me feel older than I should. So, I made a commitment to myself last year: I will look my absolute best by the age of 50. I pushed the date out because I didn’t want to put too much pressure on myself or feel like a failure by giving a shorter timeline. To jump start my journey, I’ve been phasing out meat and trying to eat more whole foods on my way to being a vegetarian.

Over the past month, I’ve been keeping a “flare-up” journal  –  a record of the foods, etc. that cause me inflammation. I was already aware that beef/pork was an issue. For years, I have known that perfectly grilled steak or that beautiful slice of crispy bacon was going to cause me misery, yet I ate it anyway. The next day, I was swollen and in a tremendous amount of pain. I finally had to ask myself the question “is it worth it?”

In my journal keeping, I’ve found there are a lot of foods that are causing me misery, most of them animal fats (butter, sour cream, etc). Fried food and anything processed is pretty much out, too. Chicken breast was my go-to meat, but going without it too has made me feel noticeably better.

I’ve had a mostly vegetarian diet for the past two weeks and I can already tell a difference. When I eat something that’s questionable, I can tell immediately in my joints. My energy level is up – which is a BIG deal if you’ve ever know anyone with RA. I just feel better.

I know that this journey is going to be a positive one and is going to change my life. When you get to be a certain age you start to value things differently. Your health becomes of the utmost importance, because without you, you have no quality of life. I value quality of life – and in turn, I might get more quantity by making myself healthier overall.

I view this as me taking control of my health. Of course for now, I’m still on my $4,000/month biologic injection for my disease. And, I’ll still have to take an anti-inflammatory when I have a flare up. But, if I can reduce the number of flare ups caused by my intake, I can reduce the amount of meds I’ll need to help ease those flares. My ultimate goal is total remission. I had a short remission once. I’d love to induce a much longer one. I have full faith in my body, my mind and my choices to make it happen.

If you’ve been thinking of making dietary changes, no better time than the present. I guarantee you’ll feel better overall with more of a plant-based diet. Eat whole foods – the way nature intended. These manufacturers have us putting who knows what in our bodies on a daily basis. You don’t have to read an ingredients label when you’re looking at a zucchini.

I’ve already lost 5 ½ lbs! At this rate, I’ll be able to get into some of those jeans I’ve been hanging onto in my closet by Christmas! Make the change. You won’t regret it!

If Today Was My Last

I saw on a game show last night that when they surveyed 100 men about how many times a day they said “I love you” to their wife, the most popular answer was one. That was shocking to me.   

If you knew today was your last day alive, what would you do?  My day wouldn’t be about doing things I never got to do. My day would be about one thing: LOVE.

I would spend every moment making sure the love of my life knew how much she was loved. I would give infinite kisses and embrace her tightly. I would tell her everything I ever wanted to tell her but held back because I might’ve thought it silly or over-the-top at the time. It wouldn’t be silly now, it would be paramount. I would tell her not to worry about what’s to come without me, and assure her I would be there in spirit watching over her and protecting her. I would let her know that when she felt it was time to move on, it would be okay. No guilt! Life is to be LIVED and to be LOVED and that is the greatest gift of all.

I would tell her that she has given me more love than I ever felt I deserved. I would let her know that she made me incredibly happy and that I was so lucky that she chose me. I would walk her through some of my favorite memories and look back on our life together. I would let her know that I’m not afraid, that I’ll be okay.

I’d make sure she knows not to spend a lot of money on my funeral. I won’t need any of that because I’ll be gone. Elaborate funerals are for the living. She would be better served by using that memorial fund for a nice long vacation somewhere that she’s always wanted to go. Don’t waste it by dressing me up and putting me in a box for people to weep over. I’d tell her that I’ve had a great life because of the love she has given me and the amazing things we got to experience together.

I know that these things are easier for me to say than for her to feel. I’ve lost someone I loved. I know that pain. I know that feeling of emptiness and longing. But I think one of the greatest gifts you can give someone is to have the discussion about when your time comes. It’s inevitable for all of us, yet we avoid talking about it like the plague. And I know that it’s because I’ve lost someone, that I stress the importance of having that conversation.

Life is so fleeting. Just a blip and then we are gone. All we leave behind is our legacy, maybe some physical things and hopefully a lot of great memories. Knowing that, why do we get so caught up in our work and our devices that we don’t take time to express what everyone will wish they’d had when we’re gone?

The closer I get to the end of my life, the more I want to live, enjoy the moments, give all the love I can. I wish I’d done it all along, but at least I have today. Tomorrow might not come. But today I can give all the love I have in my heart to the greatest person I’ve ever known. I know she will keep it forever. And in this life, I have been loved. To me, that’s all that matters in the end.

Be good to each other.

Please excuse any misuses of tense in my writing. When I’m emotional, I just write from the heart – all rules are out the window. 

Momentum

Small minded people from their small, small towns

Are led like lost sheep, mouths closed, heads down.

The stories they are told are tried and true,

Used to control and spin the truth.

From generation to generation, tales passed on

Don’t ask and don’t tell, the ultimate con.

In secret they wonder what they would find on their own

Yet, they are always redirected and led back home.

There’s only one way out when you live in a bubble

It might cause controversy and trouble, trouble, trouble.

When you question the machine and powers that be,

You risk shaking leaves off the family tree.

It is easier to stay with what you know,

Than to go on your own and buck status quo.

There is much to be seen beyond, should you choose

But only if you are prepared to have and to lose.

The world is a-changing, never to stop

For the Earth is like a giant spinning top.

Progress is good, for the soul, for the mind

Let life in, don’t get left behind.