Blog

Healthcare

Something Only Dreamed Of

Such a vague title, I know. Vague on purpose because it begs for explanation and digging deeper.

When I was eighteen I never imagined that a single condition was going to impact my life from that moment forward. One evening, a very noticeable pressure and sharp, aching sensation developed behind my left eye. Any noise or light made it hurt worse. At first, I thought it was just a tension headache, but as the first hour wore on, it quickly turned into something that I hadn’t ever experienced before. Nausea gripped my body with its jagged claws and quickly I became a prisoner of whatever this was.

We ended up in the Emergency Room; the first of many trips. Diagnosis: migraine. Now fast forward fifteen years to 2018. After failing every single preventative for chronic migraine and finally ending up on Botox in 2008, I had reached a point this year that I opted for more drastic measures. I was trying to figure out how many emergency room visits and hospital admissions I have had since 2003. Generally, at least one hospital admission a year, and on the low side, thirty ER trips in fifteen years. Each time was because I was I had exhausted all of my options available at home.

If you’ve been following my blog through the winter and spring, then you know that I had two surgeries. The first in February for the migraines, in which nerves were decompressed, muscles resected, and fat grafts placed around the nerves to prevent scar tissue build up. The second was in April for occipital neuralgia and involved nerve decompression, fat grafting and muscle resection. Even though I had done as much research as possible, I still took a gigantic leap of faith.

The question for months has been did it work? Was it worth the horrific black eyes that lasted for weeks? Was it worth the pain? Was it worth the breathing complications after each that resulted in re-admissions? One word: ABSOLUTELY. As of today, June 17, 2018, I have been migraine free for 110 days.

Was I expecting these results? Heck no! I went into the surgeries hoping for a reduction in severity and frequency. If that would have been the outcome, I would have considered it a win.

But 110 days without anything is a homerun! It’s the first time in more than fifteen years that I haven’t experienced numerous headaches per month. It still seems too good to be true. I keep waiting for a headache; keep waiting for everything to fall apart.

Superstition has a big part in my life, especially with being a nurse, it’s probably two-fold. I refuse to adjust my medication list and remove the migraine meds and I refuse to go anywhere without at least two doses of medication with me. Maybe in ten years I’ll be brave enough to overcome the superstition, but not yet.

Since June is Migraine and Headache Awareness month, I really wanted to get a blog written for it. My experience isn’t like others. Nobody’s is the same as another. Our stories are as unique as we are people. There may be similarities, but we are each so different. I know my journey with migraines is not over and honestly am not sure that it ever will be. But for now, things are controlled and I’m perfectly content with that.

stress-391657_1280

 

clinical trials, Healthcare

The Impact of a Trial

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will raise much needed awareness about the power of breakthrough research.

“No, don’t look at that trial. People have been dying in it. I don’t think it’s a good fit for you.” Those were the words that I was speaking to my mother after she was diagnosed with Multiple Sclerosis when I was in High School. It wasn’t something that you would think a teenager would have cared about that much. But I did. This was MY mother that was being ravaged by this disease and if there was something that I could do, then it was going to happen.

Eventually we found a trial that she fit the criteria for. After discussing with her neurologist in depth, she enrolled. It felt like hundreds of signatures as she signed form after form after form. We took home our copies and read through everything. The risks, benefits, potential harms, purposes and phases of the trial were all on these papers. She was entering into a study with high dose corticosteroids once a month. Well, she was enrolling but didn’t know if she would be receiving the medication or the placebo.

The study lasted for two years and she was convinced that she was in the test group and not the placebo group. There was a little more energy in her step; I couldn’t tell you if it was the placebo effect, which can be significant in studies. All that I knew for certain was that something was different.

The trial ended and by the time results of the study were released, I was in college pursuing a nursing degree. Little did I know that it was just the beginning of my experiences with clinical trials, studies and observational experiments. Within years it was me who was looking for trials. The scales had tipped the other direction.

In 2014, dysautonomia became the ‘it’ word around our home. Within days my nursing career was something of the past. The unknown factor and “what-ifs” were something that kept me up at night. I was so uncertain about how to proceed. Health care professionals aren’t supposed to get sick; okay that’s just what we think. We just make worse patients that the public because we don’t take the same advice we would give to someone we were caring for.

Even scarier in this new life of mine, was the fact that despite all the resources I had at my fingertips, there were very few regarding my condition. Any research studies only had twenty to thirty participants maximum and it didn’t look like there were any trials going on.

Fast forward to today and dysautonomia is still the elephant living in our house, but I’ve accepted it isn’t going to smother me. I’ve armed myself with information and have many new resources, including those for clinical trials. My neurologist has me listed in several registries and I’m part of an observational study. I was the first person that was enrolled. It took time and patience to get to this stage, one of acceptance and one of hope. This isn’t the end, it is just the beginning of so many more advancements and opportunities.

The patient empowerment era has been gaining traction and moving swiftly. Thinking back to even two years ago is something stark in contrast to today. We are in the age where numerous opportunities for clinical trials exist. It is an option that should be made available to every patient, every time. Empowering them is a must.

The elephant in my house becomes a little smaller with each bit of knowledge that I gain. I would imagine that it may be the same case for you.

If we can actually decrease the failure rate from nine out of 10 drugs failing in clinical trials and instead have seven out of 10 instead failing, that is a major victory for drug discovery and for people having better therapy.  ~Anne Wojcicki

lab tubes

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

Healthcare

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.

https://whatsthefix.info/conference/#register

Yellow Light Bulb

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?

sleep-1209288_1280

Healthcare

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.

lightbulb