Healthcare

Soul Sisters

Chronic illness changes a person. It changes us in ways that only fellow patients know. We grieve for the life we once had and also grieve for our new life. There are so many unknown factors as we move forward.

Naturally we begin to gravitate toward others in similar situations. In my case, an amazing group of women have become a second family. We can say it like it is, find humor in the darkest moments, and give each other the strength and courage to get through the hour or day or week.

Call it intuition, heart strings, gut feelings or twinges; we know when somebody needs us. We keep track of each other, day and night. There are many times that I get a call just as I am picking up the phone to call the same person. We just know.

While this is going to be a shorter blog than usual, I felt the need today to share this with you. Take it in. To all of my soul sisters, know that you’re in my heart all the time.

This life is what you make it. No matter what, you’re going to mess up sometimes, it’s a universal truth. But the good part is you get to decide how you’re going to mess it up. Girls will be your friends – they’ll act like it anyway. But just remember, some come, some go. The ones that stay with you through everything – they’re your true best friends. Don’t let go of them. Also remember, sisters make the best friends in the world. As for lovers, well, they’ll come and go too. And baby, I hate to say it, most of them – actually pretty much all of them are going to break your heart, but you can’t give up because if you give up, you’ll never find your soulmate. You’ll never find that half who makes you whole and that goes for everything. Just because you fail once, doesn’t mean you’re gonna fail at everything. Keep trying, hold on, and always, always, always believe in yourself, because if you don’t, then who will, sweetie? So keep your head high, keep your chin up, and most importantly, keep smiling, because life’s a beautiful thing and there’s so much to smile about.

~Marilyn Monroe

soul sister

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Healthcare

We Always Need Our Moms

First, before going too far, I want to wish everyone a very happy Mother’s Day. Being recognized once a year is not nearly enough. Being a mom is a 24/7, 365 days a year job.

Speaking from the standpoint of someone who grew up an only child, I may be a little biased. My mom was the most important person in the world to me. She was my everything, my best friend, my cheerleader and my comforter. I swear she could make anything in life better. Was she perfect? No. I didn’t expect her to be.

We would go on trips and even as I went through college, she would sing Girl Scout songs in the car the entire way. That alternated with the Beatles, so overall it was a good exposure to music appreciation. At least that’s what I always thought and still do.

She was an amazing cook when I was younger. As I got older I discovered that either my taste-buds weren’t fully developed, OR she was losing her knack for making everything taste good. She was the only person that I had ever seen put baking soda in spaghetti sauce. P.S. I would NOT recommend doing that. It tastes absolutely disgusting but makes for good stories years down the road.

As a teacher in a one-room school when I started Kindergarten, she was my teacher through second grade. Some days it felt like I had to be the luckiest kid on the face of the earth and others it seemed like maybe this wasn’t such a good idea. Mom and teacher could be a little much to handle sometimes. But I wouldn’t have traded that experience for anything.

Our house burned down when I was five. My sixth sense saved us as we went to visit friends, literally minutes before our house was engulfed in flames and collapsed. It was then that I learned what really mattered in life. It wasn’t the material possessions. We were both alive and that was all that was important. It was one of the worst experiences of my life, yet she managed to help me get through it, while I helped her.

She had been diagnosed with Multiple Sclerosis when I was in High School. My invincible mother suddenly was losing her magic touch. Changing more into a caregiver and less into the one being cared for was a difficult transition. Moms aren’t supposed to get sick. They are supposed to have super human powers or at least we grow up thinking that.

In 2010, once again I helped her. She had a surgery that ultimately ended up with her on life support, clinging by a thread. For two weeks, I did everything in my power to will her back. The first night in ICU, I watched the defibrillator used on her. Being a nurse is one thing but being a daughter who knows exactly what is going on is heart-wrenching. Separating out the nurse and the daughter roles were the only way I knew how to focus.

Ultimately, we lost the battle. She was finally free, and, in that sense, we won. No longer dealing with a disease that ultimately would have beaten her at some point, the invisible ropes tying her with so many symptoms were gone.

Although the hardest time in my life was the final few moments, knowing that she had already gone. It was just a shell that remained. My superhero disguised as a mom was no longer here.

What I’ve discovered in the past seven and a half years continues to get me through each time that I want her here with me. Our mothers live in our hearts long after they have passed. We are a part of them and always will be. There are signs everywhere that give me every reason to know that she never left my side. Why? Because believing in something is better than having no hope.

We always need our moms, no matter how old we are. Happy Mother’s Day to the best mom that ever walked this earth..

If Roses grow in Heaven
Lord, please pick a bunch for me.
Place them in my Mother’s arms
and tell her they’re from me.

Tell her that I love her and miss her,
and when she turns to smile,
place a kiss upon her cheek
and hold her for a while.

Because remembering her is easy,
I do it every day,
but there’s an ache within my heart
that will never go away.

– Unknown Author

 roses

Healthcare

Learning to Listen

This has been a week of reflection and of learning listening skills. Different listening skills than the ones we already have, but honing in on those as well. How often do you really listen to what your body needs? I mean REALLY listen?

After two separate hospitalizations this month, one including a surgery and the other coming too close with my body not liking breathing as on option for living, it’s time to focus on just that. My body. With May on track to also be a busy hospital stay month, my body is desperate for some loving (no, not that kind). On Tuesday, I get admitted for my first round of neurologic dosing for IVIg.

I just realized this morning that I’ve been in my pajamas for the last two days. It isn’t because I’m depressed or anything. It’s because I’m absolutely exhausted. Every time I sit down on the couch, I fall asleep and not just for an hour or two. Yesterday I sat down mid-morning and woke up today.

My body has no reserves at all right now. So I’m learning to listen. While my brain has lots of things to work on, my body has one. That is rest. The body wins. The one thing that I haven’t done for the last four years is to sleep and now it’s happening.

Maybe there was a shift in the universe. Maybe with migraines and occipital pain at bay, I can actually listen to what has been held under water or drown out by the other ‘noise’. Maybe I wasn’t as good at listening to my body as I thought I was. I was paying attention to the signs and symptoms but not listening. Watching is completely different than listening.

There is a swarm of physical and emotional exhaustion right now. I’ve had to wave the white flag of surrender and admit defeat. I was pushing myself so hard that I had never stopped to pay attention to what this body already couldn’t do. Pushing these bodies of ours past the limits isn’t a good idea, especially when they are in fragile condition.

Don’t forgot that while our minds may be set on something, our body has the final say. It tells up what we can and cannot physically do. These listening skills are a lot harder than anyone gives them credit for.

Have you listened to your body lately?

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holiday

Easter Whimsy

When was the last time that you received an Easter Basket or went hunting for eggs? For me it was probably in fourth or fifth grade, at least when the whimsy was still there. So, it’s been quite a few years for me and most likely you too.

Yesterday we had friends that came to spend the night. As supper was finishing up, my husband and I were told that there was an Easter basket hidden for each of us in our yard, along with 48 eggs. The challenge: find your basket and then go after the eggs. If you found the other person’s basket and said something, then you were done.

I must admit that after everything that has gone on the past few months, this was a really nice surprise. Off we went, and that whimsical feeling returned. Suddenly I remembered how exciting it was to try to get the most eggs and see what was in my basket. Admittedly, the baskets were filled with much different items than when we were kids. My husbands–a flashlight, beer, a bottle holder and a lot of candy. Mine contained a spatula, candy, large chocolate rabbit and the best thing of all, was a small, wooden sign. It read, “Swearing because sometimes gosh darn and meanie head just don’t cover it.” That is appropriate here.

We did find all 48 eggs and probably could have a sugar high for at least a week. It wasn’t the material items that made the magic. It was getting to feel like a kid again. Imagining racing for the eggs before anyone else could get them. The memories and getting to reminisce on the age of innocence; that was precious. We needed a dose of childhood again.

Being an adult has its perks but so does being a child. For thirty minutes yesterday, we got to be children again and it was delightful. We also happen to have quite a few rabbits running around here. Last week I was mentioning that ‘Peter Cottontail’ and four of his friends were running laps around a bush in our yard.

For a child, it is moments like these that we remember; also, for adults. We all need to take time to enjoy the view from the youngest generation. There is plenty of time to be an adult…

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Healthcare

Baby decisions and chronic illness

I grew up in a small town. When I say small, I mean 400 people. My graduating high school class had 18 students. That being said, I babysat a LOT of the kids in town. I always wanted to be a parent…but.

There’s that ‘but’ that kept nagging at me while I was growing up. To keep things simple, let’s just say that there is a huge neurological history in my family. Enough that even in junior high I was starting to wonder if I should carry a child when I got married. I didn’t want to pass on any genetic issues. Things seemed to run on the female side and if I could stop it, then I had a decision to make.

Fast forward through high school and college to when I did get married. We both wanted children, but something kept nagging. Then several years later I had a mass in my chest that we thought was cancer. When it was removed, it turned out to be benign, but the surgery had affected my breathing. Half of my diaphragm was paralyzed for a year and I haven’t been able to lay flat for the last seven years.

In 2014 that’s when all hell broke loose. Life was turned upside down and we were forced to figure out which way was up and what the “new-normal” was. I knew that having children was out of the picture.

Our hearts ache for what we will never have. So many of our friends have children and are having more. They are guarded when they tell us that they are pregnant. I am equally guarded in response. My heart is bursting with joy and crying at the same time.

I quilt as a hobby and have made receiving blankets, wall hangings and quilts for these precious babes. They are made with so much love and joy. Seeing the smiles on our friends’ faces when they see them is the best part.

Several friends have made us honorary aunt and uncle, which to us is momentous. We get to be a part of those kiddo’s lives. Each time I see them, I imagine what our children would be like at that stage. Then I push the thought away.

Have you ever noticed that if someone mentions a certain item, that you start seeing it everywhere? Do you have any idea how many commercials are on TV with kids? Do you know how many times we look away or close our eyes?

We’re not the only ones yearning for that something that we will never have. So many others with chronic illnesses have the same decisions to make every single day. The what-if game plays over and over and over in your head. Yet you still come to the same conclusion and there is always the ‘but.’

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Healthcare

Turning the page but not losing sight of the old

It’s January 1, 2018. You may be rolling your eyes and thinking, “well, duh.” Our resolutions to lose weight or become a marathon runner quickly escape our grasp as we reach for the last cookie from Christmas. Well maybe not that quick…I’ll give you a couple more hours.

Yesterday someone had a very valid point. Resolutions can be challenging in themselves, but add on multiple chronic illnesses and it turns into a tightrope course. Personally my balance sucks (I’m not even going to attempt to figure out how many times I fell in 2017). What if instead of resolutions, we set a goal each day? To me that seems manageable. We do it all the time already. Why not stick with what we know? There is nothing written in stone that says, “you MUST declare a resolution on Jan 1…or else!”

Let’s make 2018 the year for us. If we aren’t caring for ourselves, then how can we be expected to carry out multiple roles that we occupy on a daily basis. That seems like an obtainable goal. Let’s get better at self care and let go of everything that is holding us back. We only live once, so we need to make this life something that we cherish each and every day.

Putting yourself first is not selfish. It is actually a gift. Others take care of us too, but we need to start the process. Hold yourself accountable for your actions.

Before we completely start a new chapter, we need to finish the one we were just on. What was 2017 like in your book? I know for many of us, it was a rollercoaster ride.

My year was a whirlwind of good and bad. I have more insight into my medical condition and have a booming blog (thanks to all of you)! Most important in the good column is that I’m sitting here breathing. That is something that we should all be thankful for.

2017 was also a year of losses. Several very close friends of mine passed away. The world somehow seems a little smaller without them in it. Even though they will live on in our hearts forever, the physical emptiness is profound. One of the hardest things about doing Christmas cards is taking names off of the list.

This was a year of exploration and discovery. It seemed like opportunities have been appearing around every corner. My disease finally gave me something to really be grateful for. I didn’t think that would ever happen. Good things can come out of bad situations. They may not be in the way we thought. But, ultimately the man upstairs has a lot in store for you and I.

As we turn the page. Don’t forget to sign on the dotted line. 2017 deserves your autograph. 2018 is just getting started. So here’s to goals, self care and putting yourself first. You’re armed with an assignment….now get going! The minutes are ticking away.

When you call on me
When I hear you breath
I get wings to fly
I feel that I’m alive
When you look at me
I can touch the sky
I know that I’m alive
When you bless the day
I just drift away
All my worries die
I’m glad that I’m alive

~Celine Dion

happy new year 2018