Migraines vs Pain in the Pagers

Twenty-four hours post-op from a nerve decompression surgery for migraines and the patient was miserable with intense pain. The nurse had been paging the residents all day without any response. Giving the maximum amount of medications every three hours along with breakthrough pain dosing had proven to be inadequate. Aside from one precious hour of sleep during the night, the patient hadn’t even rested since coming out of the operating room.

By the way, I’m that patient. This was my big step into the unknown, because I felt like there was something there that was going to be positive. This surgery could be life altering. But, I had to get past the immediate post-op recovery before we could determine if this had been worth it. Botox wasn’t doing its job sufficiently anymore. Occipital neuralgia had added into the nightmare of pain as well. I had taken a leap of faith.

There is something about hurting so badly or feeling so miserable, that it seems like any capability of rational thought process is turned off. We go into survival mode, it’s a protective mechanism that our bodies have preserved through thousands of years of evolution. The only thoughts were pain, hurt, tired and an intense desire to rest.

I have endured numerous hospitalizations for migraines over the course of fourteen years. I know what pain is. Before even figuring out which way was up, I had to figure out how we were going to control my pain, which wasn’t migraines! I already had won on that front. This was pure surgical pain and something that I couldn’t make anyone else feel.

Throughout the twelve-hour shift with my nurse, we had brainstormed numerous strategies for how to get my pain controlled. All of them had gone unanswered with pages. A baby-faced resident came into my room late in the afternoon to see how things were going.

I forgot to mention that in the morning, the group of residents, with an attending MD, casually came into my room and had said that they would get me up and moving and I would be going home in the afternoon. This was all without ever asking how I was feeling about things.

In the afternoon, the resident had no idea what he was up against as he strode into my room. Aside from being exhausted, cranky and at my wit’s end with pain. He had no idea that I was a Registered Nurse also.

When asked how I was feeling, the words just gushed from my mouth. I told him about how much pain I was in and about the pages being unanswered throughout the day. Going a step further I told him about the plan that my nurse and I had come up with for trying to get the pain controlled. When he said that he wanted to lower the dose of one of the medications, I stopped him before he even got the entire sentence out. I said a range would be appropriate so that we could adjust and not need to page them each hour. It would save time for them and the nursing staff, whose hands would be tied if there was a single dose that was inadequate.

Trying to describe the pain and talking about that it isn’t a “one size fits all” kind of sensation, nor is the medication required to control it. Each person is different and that needs to be considered. I also told him that my blood pressure medication had been ordered incorrectly and that needed to be fixed. After going over ALL the dosages, medications and issues for the day, I shooed him out of the room so that he could enter orders before he forgot them.

While this encounter may sound harsh, it was the only time that day that I was finally empowered. Patients shouldn’t have to accept inadequate care. My nursing background did give me another leg to stand on as well. My surgeon came in later that evening and said that we definitely needed the modified treatment plan and to take whatever was needed to get comfortable.

This situation did have an adequate resolve. My pain got controlled, blood pressure medication was ordered, I got to rest and amid everything, also taught somebody about the art of medicine.

The next morning a case manager was sitting in my room chatting and the resident came in to check on me. I apologized to him for perhaps coming off a bit harsh the prior day. However, I also reminded him that when a patient is in a bed, we are already in a vulnerable state. It is up to the health care team to advocate for us.

As he walked out, I mentioned that he and his fellow residents should take these events as a learning moment for how they will each practice medicine moving forward. Even as they are treating patients, they should be learning something from every single person and that should continually mold them.

This blog was written for HealthSparq and What’s The Fix 2018 #WTFix.
Originally published



Quilting Medicine

Each day as I gaze across the room, I smile at a picture of a quilt. That may be seemingly simple, but to me it is beauty in every meaning of the word. The following quote is next to the picture.

“Families are like quilts,

lives pieced together,

stitched with smiles and tears,

colored with memories,

and bound with love”

That quote may seem simple to some but is so meaningful on a lot of levels for me. A family isn’t just born. Everyone has a different relationship, interacts with others slightly different and naturally finds that perfect mix of people. Events in our lives change the shape of families but love always takes precedence.

As someone who quilts, truer words have never been written. There is something about how precise each cut of fabric must be. The precision of sewing each seam and having a work of art come together right in front of your eyes.

The other day as I was working on a quilt, I was pondering the quote. It struck me how easily this could also be applied to healthcare and medicine. The precise cuts for each square or border can be compared to a surgeon making opening incisions for an operation.

Healthcare truly is a work of art. It may not seem like it many days, but a very large majority of the caregiver population, truly love the profession that they have chosen. I know that choosing nursing was something that I always wanted to do. There was never a doubt in my mind.

The process that takes place when a provider is assessing us, providing a treatment plan and follow-up recommendations can be compared to sewing a quilt together. All the pieces must be in place before it can be completed.

Many times, there are issues with our healthcare or health status and we are forced to take a step backwards or several. The same is done with a missed stitch or crooked seam on a quilt. Until the other day, I never had thought of healthcare this way. It is true though. Look at a quilt or blanket on your bed. The intricacies and character.

This takes us right back to “lives pieced together.” Every member of our family will eventually have an encounter with the healthcare community. Losing a portion of that quilt can be earth shattering. Then we are forced to pick up the pieces and move on, figuring out life once again.

quilt flowers


Take a hike migraine!

Twelve days and counting. That’s how long I’ve had my current migraine. Yes, twelve days and no, that isn’t a personal record either. I just realized this morning that the only time I’ve seen the light in the last couple weeks has been if I have had an appointment. Otherwise the blinds have all been closed as a constant pain has its grips on me.

For millions of Americans and even more on an international level, chronic migraines represent a very disabling medical condition. If you haven’t ever had one, then consider yourself among the lucky. Take the worst possible headache that you have ever had and amplify it by at least twenty times. Then add in light, noise, taste, and smelling sensitivities along with the intense desire to throw up. Mull it into a lovely mixture and that is just a tiny glimpse of what many of us face multiple times a month, sometimes daily.

My migraine journey began when I was eighteen. It made me so sick and I didn’t have the slightest clue what it was. If only that ignorance could have continued a little longer. Before I knew it, we were trying prophylactic medications like they were candy. One wouldn’t work so we would move onto the next class of drugs. Nope, cross off another one, yes that one too. In less than three years we had exhausted the prophylactic realm as well as abortive medications.

Going through college with migraines was an absolute nightmare. If nursing school wasn’t enough stress, this added another element. Numerous trips to the Emergency Room for rescue medications and never being able to get them to just go away FOREVER.

Fourteen years have passed since I received the dreaded migraine diagnosis and I can’t even count how many times I have been hospitalized, many of which were for a week at a time. Ten years have included receiving Botox injections, which is becoming much more common. However, my dose and frequency has maxed out, leaving me with nowhere to turn if things ever quit working. Every ten weeks I have been getting 25 injections for one round of Botox. Don’t get me wrong, that was like night and day. It took me from three to four migraines a week, down to three or four bigger migraines in three months, in addition to a few smaller ones.

For me the Botox was nothing short of miraculous once I received approval. However, enter in autonomic dysfunction and the whole picture changed again. Three years ago, I started developing occipital neuralgia and the only treatment that really helped that was nerve blocks. So, my schedule became Botox every ten weeks and nerve blocks every twelve weeks. My addition skills haven’t diminished through everything. Let me tell you, that is a LOT of poking and prodding on your head. My multiple pulmonary emboli last spring made it so that nobody would do nerve blocks anymore.

I already had been doing research for several years about migraine surgery and had kept pushing it to the back of my mind, thinking that if things ever got extreme that it was something that I was informed about. Last summer after my neurologist had quit looking for other options of treating my occipital neuralgia, I went back to work trying to figure out what could be done. My migraines were being directly impacted by this.

The first thing that came to mind was the surgery that I had put into my file a few years before. After a consult with one of the plastic surgeons who performs the procedure, the planning started. He said that I was a good candidate. The BIGGEST part was that I couldn’t have any Botox or nerve blocks for five months! I almost choked when he said it, but I knew that we were at a point that we needed to try something. I had initially just gone in for a consult for the occipital pain and we determined that we needed to do more. Everything has risks, and this does too, but I feel like there is a glimmer of hope to get at least some quality of life back. If we accomplish that, then this surgery is a win.

I saw my autonomic specialist last week and was updating him regarding having the procedure. His eyes lit up immediately. He said he was very excited to see if any of my autonomic issues will settle down some. I also was thinking the same thing. Everything is so hypersensitive, so if we can perhaps dial back the migraines, maybe other symptoms will mellow a little.

The possibility exists that there could be a complete stop to the migraine. However, that isn’t something that I’m expecting. If we can decrease the severity and frequency, then we have made a difference. Perhaps being able to stop the Botox at some point would be conceivable, but even decreasing dosing and frequency would be nice things. We don’t know how this will turn out.

Now that I’ve told you my story, I’ll start filling you in on the procedure(s). My case will be a two-phase surgery. The first one is on Wednesday, Feb 21! This week!!! The second one will be April 9. Don’t worry, I will do updated blogs as the healing and recovery process go on, so that you can all stay in the loop and see how this works.

Even though everyone has been calling this “migraine surgery” technically it is nerve decompression surgery. There are many websites with information, but Cleveland Clinic is where the procedure was investigated and developed. This was after they were having patients come back after cosmetic procedures saying that their migraines were gone.

There is a great blog that describes the process. I’m going to link to that so that we aren’t reinventing the wheel with blogs :). Without further ado…Migraine: Choosing Surgical Nerve Decompression Candidates. I will make mention, that my procedures will include doing fat grafting around the nerves that are decompressed so that scar tissue doesn’t build up and compress them again. Much of the research that I’ve done hasn’t mentioned that element. Also of note is that there are a limited number of plastic surgeons who do the procedure nationwide.

Other nerve decompression resources:



Not Another Medical Bill…ugh!

A few months ago one of the Patient Leader groups that I’m a part of, asked a simple question. It seemed like a simple one. Had we ever come across any mistakes on our medical bills? To a lot of people, the answer probably was no, or what are you talking about?

When the Explanation of Benefits comes from your insurance, do you look at it? Do you compare what the medical facility charged, what was reimbursed by your insurance coverage and what your copay or deductible are? Many of us don’t give it a second thought. We figure that if we got a bill, then it must be correct.

You’ve been thinking wrong for far too long. It’s time to start going through everything with a fine-tooth comb. Absolutely, 110% KNOW WHAT YOUR INSURANCE PAYS! This is imperative, also track your deductible and out-of-pocket maximum for each year. Many, like my husband, only go to the doctor once a year. Those of us with chronic illnesses and frequent doctor visits have a complicated view.

I have two classic examples of errors in billing and reimbursement. When my mother was in Intensive Care and ultimately passed away, she had met her out-of-pocket maximum within a day of being admitted. However, guess who got a bill for five figures? Me, the Personal Representative for the estate. If I wasn’t already looking into everything that came to my house, this was one that made me jump backwards. After making a few phone calls, verifying coverage with insurance, speaking to the hospital, and then speaking with insurance again…the end result was pretty miraculous. Or maybe it was someone savvy enough to be paying attention. In one day, less than eight hours from the first call to the last, that bill dropped to $0.

Even assuming that mistakes this large don’t happen everyday, what about the hundreds of smaller errors that don’t get caught?

Another situation was for something that the hospital didn’t charge for. I caught it on my explanation of benefits and compared to my bill. This prompted me to contact the hospital and have the billing resubmitted.

If you don’t do anything else, try to make a practice of comparing your statements and your EOB. Too many times things are overlooked. I would be curious to know how many people pay bills because they never reviewed the paperwork. Never, ever, ever assume.

It’s not quite like winning the lottery, but wiping out a five figure bill in under eight hours, is a great feeling! Do you have any similar experiences?

health insurance


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.’




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


DrugStars App Review

With so many health apps on the market right now, it is difficult to discern which way is up at times. Break your search down further into apps for tracking your medications and you are going to bombarded with a plethora of options. What if one application could make medication compliance something that we all looked forward too?

It just so happens that there is an app that is breaking into the US market. It already exists in Sweden, Denmark and Norway, but the states represent a new potential for consumer base growth. Okay, I’ll stop with the lingering on and dragging things out. Onto the good stuff!

DrugStars is an app that truly adds incentive into your daily medication routine. For each medication you take, you receive a star. One star equals one cent. For every fifty stars that you earn, it makes you eligible to make a donation to the patient organization of your choice. So, you’re sitting here thinking, “when are we getting to the, what’s in it for me portion?” Here it is…each time that you donate fifty stars, you will be placed into a monthly raffle for health-related gift cards. These are recognized at many locations.

Fifty stars may seem like a lot, but considering that you get one star per day for each medication that you take as needed, in addition to a star for each of your scheduled medications. Then the deal starts to sweeten a little bit. This app also includes the ability  to review each of your medications–the result fifty stars per medication!

Adding the additional feature of being able to receive clinical trial information and newsletters makes this the perfect app for any of us who are on medications. Patient organizations can also team up to receive donations. This app all around seems to satisfy the needs of a multitude of populations.

Apple users and GooglePlay store users are in luck. There is a version for both stores…here are the links. Also feel free to go to for more information.