Healthcare

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:

headache

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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.’

baby

 

Healthcare

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 tohttps://www.drugstars.com/ for more information.

iTunes

GooglePlayStore

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Healthcare

A Dose of Holiday Magic or Something

I’m sitting here thinking that it doesn’t feel even a little bit like Christmas. Maybe it has something to do with a total lack of energy and feeling like I got hit by a bus. Maybe it’s because there doesn’t seem like there has been a lot of joy lately. As my autonomic symptoms have been ramping up, so have the falls. Two major falls in two months. I’m a little nervous to be alone just because I’m afraid of falling now.

It’s amazing how our illnesses can make our world seem so small. We visited some family yesterday, which was wonderful. But I was tired enough that I made it through dinner and had to go lay down. At the very minimum it was a change of scenery. We can be just as miserable somewhere else as we can at our own house…we just have to change our clothes and look a little more presentable.

While it should be a joyous occasion watching young children open their presents, for me it’s an entirely different feeling. Sitting and watching, makes my heart ache for what I know we will never be able to have. My disease has affected every aspect of my being. There are days that I can hardly take care of myself, let alone our two dogs. But the one thing that my husband and I wanted the most in the world, is the one thing that I am unable to give; a child. Even an adopted child would be too much to handle and it breaks my heart. But, I reflect back to when I was young and have sweet, resounding memories…

The rule was that I couldn’t go see what Santa brought me until the sun came up. At the time, it felt like an eternity from waking up at midnight until 7 am. Then my mom let me race into look at what was in my stocking. The true innocence of childhood.

There are also joyous memories of Christmas while we’ve been married. Saturday is our 11 year anniversary already! Memories are something that will warm your heart and bring a smile to your face.

I actually had part of this blog written a couple of weeks ago and as I’m sitting here reading through it, there is a smile that crept onto my face. This is the magic of Christmas.

Our very first Christmas tree we put up also happened to coincide with having two brand new kittens…sisters at that! Every single day, we would come home from work and the tree would be shaking just a little bit. Upon closer inspection, there were two tiny kittens sitting in the tree. There also would be a pile of lights next to the tree and a new selection of ornaments handily removed by our new pets. This happened every single day. Every few months for at least two years, we  would find a tiny ornament that had escaped our frantic search when we put the tree away.

Two years ago was when we decided we were brave enough to put the tree back up. By then we had a beagle as well. We did a good job “cat-proofing” our tree. None of our treasured ornaments went up. We did a trial

We have several rules/traditions at our house for Christmas.  1) Sugar cookies in large quantities are a must, if you don’t have a sugar high when you go to bed, then you haven’t had enough!  2) EVERYBODY believes in Santa.  3) Watching “A Christmas Story” is mandated.  It must be watched at least twice during the holiday season.  4) “The Polar Express” is read aloud on Christmas eve.

I will be the first to admit that I thought “A Christmas Story” was annoying.  You can only listen to, “you’re gonna shoot your eye out kid,” a few times before you want to pull your hair out.  The leg lamp too…don’t get me started.  This was my opinion until I met my husband!

Since we’ve been married, I now love listening to the giggles when the kid gets his tongue stuck to the flag pole. My husband still REALLY wants to get an inflatable leg lamp for our front yard. I think you know who won that argument!

Perspectives change and lessons are learned.  I had never even heard of “The Polar Express” until the movie came out.  Now, the songs are memorized and the book is read aloud at least once a year.  If you can’t act like a kid during the holidays, then something is the matter.

Although nobody in this house is getting an Official Red Ryder Carbine-Action Two-Hundred Shot Range Model Air Rifle, we have plenty of fun to go around.  It’s the tradition and warm fuzzy feelings that make it our favorite time of year.

No matter what is going on in our lives at this moment, make sure to let Christmas rest in your hearts. Take in the magic that comes with it. Even if you aren’t in the mood, we only have these moments once a year. Time isn’t something to be taken for granted. Have a very Merry Christmas.

Have yourself a merry little Christmas
Let your heart be light
From now on our troubles will be out of sight

Have yourself a merry little Christmas
Make the Yuletide gay
From now on our troubles will be miles away

Here we’re as in olden days
Happy golden days of yore
Faithful friends who are dear to us
Gather near to us once more

Through the years we all will be together
If the fates allow
Hang a shining star upon the highest bough
And have yourself a merry little Christmas nowchristmas magic

 

Healthcare

Where my demons hide

I saw a new autonomic specialist the beginning of May. Work began on this post before I had the appointment, because I was waiting to get told the same things we already knew. “This is a really rare condition and all we can do is symptom management; we can’t reverse the damage that’s been done.” I’ve already faced those demons several times and have grieved each time, knowing that life is never going to be what it was before. However, I was forced to face them again. The feeling in the pit of my stomach, that something was much more serious, proved to be true. I cried for days before the appointment in the solitude of the comforting walls of our house. It’s called anticipatory grieving and nails it on the head.

When the dreaded day came, I didn’t even want to go in for the appointment. I finally broke down and told my husband about my fears. Being a mechanic, he needs something concrete for an answer. He fixes things for a living, but the one thing he loves the most, he can’t fix at all. He coaxed me out of the car and tightly held my hand as if he was willing courage into my heart.

The appointment lasted 90 minutes and the doctor was never rushed. It was probably the best appointment that we’ve ever had. Those fears I had about this monster taking over my body and the resulting sequelae, well my gut feeling was correct…again. Our doctor is fairly sure he can put an official name to this. Although this is autonomic, it is not a neuropathy, as we had believed for over three years. It is a central autonomic disorder, which increases the fear factor and seriousness. He also believes that I was born with a mitochondrial disease and that is now attacking my brainstem.

As of now, we are back in the testing and consult phase. It feels like we are starting the entire diagnostic process again; the difference being that this time there is no going backwards. It’s just going from bad to worse. It’s just a matter of how bad.

So, I’m facing my demons again and the grieving is in full swing. The unknown is so hard to face. I had made peace with the fact that we sort of had a name, were attempting to treat symptoms, and knew that it was progressing. It was kind of like just floating in mid-air. I was okay with that. Things are different now; the grief process has reset, yet again. These diseases of ours, no matter if they are physical or mental; they all have a large emotional toll that we don’t want to admit to…I know that I don’t want to admit it.

I want to be me, the old me, the me I was three and a half years ago, before my life changed in a matter of days. I’m tired of being home every day. 1273 days of attempting to accept this new normal but yearning and dreaming each day of who we used to be.

So, I’m declaring war on my demons. Well, I think I am. Even the best laid plans have kinks in them…
demons hide