Being a mom to a chronically ill child, is one of the most challenging things I’ve experienced thus far.
With running back and forth between my own doctor appointments and my child’s, I easily became overwhelmed. Stressed out took on a new meaning. I honestly didn’t think I had it in me to be the mother my other two kids deserved.
I was drowning in my own sea of medical issues. How would I ever overcome the unexpected obstacles life was throwing my way, if I was too ill and always in a tremendous amount of pain to handle it?
2016 marked my 2nd year as an Advocate for Migraine and Headache Disorders, as well as, an Ambassador for the U.S. Pain Foundation.
In February I attended Headache On The Hill in Washington DC with my 13 year old son. We spent the day speaking with our State’s (Wisconsin) Congressional members about living with debilitating chronic migraines and cluster headaches. We both shared how our neurological diseases impacted our daily lives and how there’s a desperate need for more funding towards research.
Not only did our State’s representives listen, they truly empathized with us. The best part was how they learned it is not always easy to find an effective treatment plan because each paitent responds differently than the other.
Case in point, the same medication and dosage that worked wonders for my son put me into a comatose state for weeks and landed me in the ER several times.
This was the first time I left Capitol Hill feeling accomplished as an Advocate.
I was especially proud of my son. He braved through his own migraine attack from the night before to join me and the other advocates hoping to gain the support of their own State’s congressional members.
My advocacy efforts did not end there.
In June I took to social media along with other paitents, caregivers and medical professionals to help raise awareness on migraines and headache disorders.
The entire month of June is dedicated to this cause as a means to end the unnecessary stigma that stems from individuals whom view migraines and cluster headaches as an unimportant health issue.
I furthered my dedication to raising awareness by doing a podcast with Joni Aldrich of Treatment S.O.S. We spent 45 minutes discussing various topics related to my health over the past 3 decades of my life and how I manage to care for a child that has just as debilitating migraines as my own.
Anytime I can openly discuss how my life has been negatively and positively impacted by migraines or cluster headaches, you better believe I’m going to do so.
With the rest of summer causing multiple health delimnas for myself and 13 year old, I took some time to rest and work on regaining control over my overactive immune system.
Once fall approached, I finally felt well enough to advocate locally.
In September, I joined other U.S. Pain Ambassadors by helping beautify cities and towns throughout my State in blue.
Beautify in Blue is a campaign created by the U.S. Pain Foundation that highlights the bravery, courage and perseverance of pain warriors during the month of September.
With the permission of business owners and the Mayor of Green Bay, I decorated designated areas with blue ribbons and signs.
In total there was 8 participants. 12 signs and numerous ribbons was displayed for Pain Awareness Month.
I would have loved to put more ribbons and signs out, but in the world of a spoonie the state of your health has the ability to render those ambitions.
Which brings me the advocating goals I’ve set for 2017.
With the State of Wisconsin electing a new congressmen for my district, I felt it was important that I be in Washington D.C. for this years Headache On The Hill. If anyone can convince a person why they should fully support paitents living with neurological diseases like migraines and cluster headaches, I am the right gal for the job.
The entire month of May will be my busiest.
The Arthritis Foundation and other partners observe Arthritis Awareness. The 12th is designated as Fibromyalgia Awareness Day. Not only does my mom have Rheumatoid Arthritis, she just received her latest test results and now we both have Fibromyalgia. It’s definitely not something I want to have in common with my mom, but we can take a little comfort in knowing we have one another for moral support.
Next on my list is taking part in my very first walk/run marathon in May.
Miles for Migraines will host a 2 mile walk/5K/10K run at the Diversey Harbour in Chicago. They are dedicated to raising awareness and funds towards migraines and other headache disorders.
Running isn’t in the cards for me, but I’ll gladly walk the miles with anyone else that is willing to join in our cause.
In June I’ll be on full mission mode for Migraine and Headache Disorder Awareness Month. I’ve been doing my part to help raise awareness throughout the month going on 4 years. I have to admit, it’s pretty amazing how many people will open up about their own experiences with migraines or cluster headaches once you’ve shared how your life has been impacted by these neurological conditions.
That alone, makes me feel that I’ve done my part as an Advocate.
As September approaches, I will contact Governor Scott Walker’s office to ask him to sign his 4th proclamation for Pain Awareness Month. This time around, I’d like to display Beautify In Blue signs around the State’s capital in Madison and setup an educational table at several health fairs or hospitals in Wisconsin.
Now that my goals are set, I am going to do my very best to achieve each and every one of them.
Something major happened in our household this week.
For the first time in a little over 4 years I returned back to the work force.
I know what you’re thinking. Women go back to work all the time so what’s so major about this? For starters, I was forced into being jobless. Actually, it was my body that made me not be able to hold down a job.
You heard me right! My body was the culprit as to why I could no longer do the many things like I had before. The main one was walking unassisted.
All I remember is it was the Friday evening before a full weekend of birthday parties. I had finally crawled into bed after writing a chapter for a book that was soon to be published. In no time I drifted off to sleep.
In the early A.M. hours the loud echoes of my kids laughter in the hallway woke me out of my deep slumber and…..
Just like that my whole face, left arm, and every single one of my fingers was numb. I tried to stand up, but fell onto the chair that was next to my side of the bed. I had somehow lost all of my lower body strength.
It was like gravity ceased to exist beneath my feet. To make matters worse the world around me wouldn’t stop spinning.
With the help of my oldest daughter and husband I got into our vehicle to head out to the ER worried I was having a stroke. One EKG and CT later a stroke was ruled out. This left the doctor baffled to what was going on with me. So I was given a referral to an E.N.T (Ears, Nose, Throat) Specialist and sent home.
The next day I saw the Specialist with high hopes of finding out what the hell was going on with me. I didn’t find anything out that day or for the next 2 months for that matter. I had all types of blood work, some odd test that shot water in both ears while I recited the alphabets, an additional CT, a MRI, an Angiogram, and Angioplasty. All results came back negative for ruled vertigo, Lyme disease, a brain tumor, concussion and tons of other medical conditions I was thought to possibly have.
I was beginning to think I had some new illness or disease that no one had heard of yet. I just wanted to be normal again! Well the normal I had grown quite accustomed to in my 35 years of life.
After a month of Vestibular Physical Therapy sessions to see if I could regain my balance a possible answer to my odd medical condition presented itself. My Physical Therapist started digging into my prior health background and that is where he began to suspect my decreased motor skills and dizziness was linked to neurological issues; ones that were caused by migraines.
I’m not going to lie. I laughed. I shook my head in complete disagreement and chuckled at this man’s logic. How on earth could migraines be the cause of so much grief? For cripes sake! I’ve had those horrible head demons for the past 20+ years and NOT ONCE did I ever have issues with speaking, walking, or feeding myself.
Nope! I was not going to believe something like migraines could ever be that disabling. That was just ludicrous!
Of course, by month #3 of seeing absolutely no improvements with my health I became desperate. I decided to take the advice of my Vestibular Physical Therapist and got another referral. This time it was to see a Neurologist.
15 minutes into my appointment I FINALLY got an answer to why I felt that I was permanently strapped into a non-stop tilt-a-whirl.
I had Vertigo Associated Migraines that were Chronic.
To say that diagnosis went right over my head was an understatement. I seriously had no clue what either one of those health conditions were. I knew the migraine part but even that didn’t make any sense to me. My migraines always had auras and would make me blind in one or both eyes. And when I did get them the attacks would only last 2 -12 hours. Not every, single day.
It was a few minutes later that I would start on a path to being educated about a neurological disease that over 38 million American’s have and currently there is no cure for.
Oh, by the way there are other types of migraines. Yeah! That was actually news to me at that time.
In total, I spent 240 days STRAIGHT experiencing chronic migraines.
I even went 18 months without driving due to the severity of my symptoms. You’d think having a chauffeur 24-7 would be great. It wasn’t! All it did was make me feel helpless and a burden to my loved ones.
During that time I tried 30 types of prescription medications, a variety of vitamins, Botox injections, and alternative methods to help with my pain/symptoms. I eliminated gluten for about 2 months and drank more water to stay hydrated. I even went as far as to travel out-of-state for about a week thinking a change in climate might actually help. It didn’t. I only came back home in worse shape than when I left.
Honestly, I still live with chronic pain. I still get migraine attacks like the one I had on Tuesday and today. When my fibromyalgia flares up it can cause me to have a migraine attack as well.
Then there’s my cluster headaches that are seasonal (Fall and Spring) When I get hit with a cluster attack it happens around the same time (11 AM & 1:30 AM) each day. The right side of my nose gets extremely stuffy while my right eye tears up. If I’m wearing mascara and eyeliner, but forget to use waterproof I end up looking like Alice Cooper.
I knew when searching for a job, part-time and evening hours were a must. There’s no way I could deal with being around people when the beast hits me for those 25-30 minute span. Trust me! I isn’t a pretty sight to see someone in the midst of a cluster headache.
They cuss, punch things, sometimes even bang their head against objects in hopes of feeling any other type of pain than the one they’re experiencing in that moment. Having a limb amputated without anesthesia would be less painful than a cluster headache. It’s actually scientifically proven to be one of the most painful disorders known to man.
You’d think with all of my health conditions I would just give up on the notion that I could hold down any kind of job. But I never have. I’ve been waiting for this very day to arrive and now that it has I’m truly thankful.
Like the George Bailey type of thankful in It’s A Wonderful Life. You know when all of that bad crap happened to him and he realized how wonderful his life truly was.
I seriously took everything I had for granted in my life before becoming chronically ill. I had a job, but never thought for a second I’d lose it. Then I was let go after the FMLA expired on my current position at the bank I had worked for. I know I wasn’t fired for being a crappy employee, but I still felt like a failure.
It took almost 2 years for me to come to terms with the fact my chronic illness is the villain in my real life story. Now I just find new ways to defeat it. I know there will be days that I’ll come out victorious and other days I won’t be as lucky.
Either way I do my very best to remain positive throughout this crazy adventure I seem to always be on.