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


Stories That Impact Healthcare

There are health care conferences hundreds of times throughout the year in the United States and thousands internationally. What is the one things missing from 99% of those conferences? Patients.

If it weren’t for patients, how would a hospital be able to stay open? How would doctor offices maintain staff? As many times as, we may feel like everything in medicine is going against us, we are the reason that it exists.

How can we make a difference? Stories. Stories make more impact than a diagnosis. People remember stories, they don’t remember medical record numbers.

This Thursday on 5/17/2018, there is a conference that involves patients. It is people telling stories about how they went around the obstacles and made a difference despite the odds and despite not receiving care that was adequate.

Don’t get me wrong, I’m a nurse and I loved my job each day. I’ll never regret my career decision. However, I’m also a patient and there are a lot of things that need to change. Seeing things from both sides of the fence makes many issues even more urgent.

If you think there is something wrong with our health care system and wish somebody would listen, this is the conference for you. It’s called ‘What’s the Fix.’ You’ll love this, the theme: people kicking the hell out of health care.

You can still register and attend online and it’s free. My blog will also have the Twitter stream from the conference, so you can see everything that people are saying. If I caught your interest at all then wander over to the following website and sign up.

Yellow Light Bulb


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



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?



High centered by life

I was planning to write a blog about how successful my surgery was last week. I was planning to write it a few days ago. Instead my body and life took a detour.

The news that you have been waiting for…”yes Virginia, there is a Santa Claus.” At least that’s what I have wanted to put for so long. I’ve been planning for the day that it would be appropriate to gingerly place this one-liner into a post. Today seems appropriate to do that.

Life has not gone as planned. Surgery was successful; at least I think it was. My sutures are still in place until next Tuesday. At this point there is very limited mobility of my head due to the restrictions of the stitches. My incision is much larger than I had anticipated. It extends across the entire back of my skull.

My husband had already seen the incision and had maintained a straight face while not telling me that I was pretty much split ear to ear. Later that evening, I had one of the Respiratory Therapists take a picture so that I had a baseline to refer to once we came home. One glance and the phone almost fell to the floor.

It was quickly after that point, that I realized the paperwork that I had at home only referred to the greater occipital nerves and not the lesser occipital nerves. Thus, the confusion. Don’t get me wrong, I would have proceeded with surgery regardless of how large an incision there was. The shock value was a little more than anticipated.

We also had some post-operative issues that needed monitoring. Things like not being able to touch the left side of my neck the next day and a “squishy” spot above my incision raised the concern for hematoma formation.

All surgeries carry inherent risks. Even elective procedures face hiccups, especially when combined with numerous chronic illnesses. There is much more to come; probably two or more blogs. I’m going to leave you on a cliff for the moment, because I don’t have the energy to continue typing and this seems like an appropriate point to step away.

Today’s blog is brought to you by the letter, N–nap.



Phase 2 Migraine Surgery

At the end of February, I wrote about my upcoming nerve decompression surgery. Within that post, there was a promise that I would keep everyone updated. Here it is.

Yesterday was exactly five weeks post-op! The time has gone by so fast, and at the same time has crept by while dealing with pain and the recovery period. After the initial shock had faded away about having two stunning black eyes, I had to keep pinching myself. There was no way that this could be reality. When I went in for surgery, I had a whopping migraine and when I came out; nothing! Of course, the surgical pain was not an enjoyable experience but none of it was migraines.

I have been 100% migraine free for five entire weeks. My hope for the surgery was that the migraines would be less frequent and severe. That would have been a win in my book. This is like a slam dunk! I’m still superstitious that it’s too good to be true but maybe it isn’t. Maybe my leap of faith worked. In the meantime, I am keeping my fingers and toes crossed as well as knocking on wood.

The reason that I sought a surgical consult in the first place was for my occipital neuralgia. If you aren’t familiar with this condition, then you are in luck. I have a little “101 lesson” for you!

Symptoms include continuous aching, burning and throbbing, with intermittent shocking or shooting pain. The pain often is described as migraine-like and some patients experience other symptoms common to migraines and cluster headaches. The pain usually originates at the base of the skull and radiates near the back or along the side of the scalp. Some patients experience pain behind the eye on the affected side. The pain is felt most often on one side of the head but may also affect both sides of the head. Neck movements may trigger pain in some patients. The scalp may be tender to the touch, and an activity like brushing the hair may increase a person’s pain.

American Association of Neurological Surgeons: Occipital Neuralgia

While there have been no migraines, the occipital neuralgia has continued to be a nuisance. Until you have experienced laying your head on a pillow and having extreme pain or have combed your hair and cried because it hurt so bad, there is simply no way to describe the intensity.

Thus, phase two of my lovely surgeries. On Monday, I will be having nerve decompression done on my occipital nerves. The incision will be on the back of my head and four nerves will be worked on in total. Fat will pad each nerve so that scar tissue doesn’t cause problems in the future. There will also be some muscles that are resected in my neck. It will be another big surgery to recover from.

The results of the last surgery leave me feeling hopeful that this will also be a success. Quality of life is so important, and pain has such a massive effect on every aspect of our life. So, on a wing and a prayer, here I go again with a leap of faith. On Monday, if you think of it, say a little prayer.

…and yes, I’ll keep updating everyone!



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…