Headaches, Part II - 3/20/15

The headaches I wrote about last month have continued at a slower pace and I haven't been back to the doctor recently so no new news on that front.  None medical "headaches" have been popping up too often lately.  Anyone who has to deal with insurance on a relatively regular basis knows it can get frustrating.  So far my insurance dealings regarding my ataxia haven't been too rough, it's getting the rest of my family covered that's been tougher.

When I graduated from college I worked in the golf industry.  The company I worked for owned or operated 40+ golf courses through out the USA.  So it was pretty large.  I was employed at one they owned.  My wife was a teacher and between our two places of employment we were able to have work place provided insurance.  Then when we moved we still had group coverage through her new teaching job.  At that point our second daughter was born and we made a decision for my wife to be a stay-at-home mom.

When we made that choice I was no longer working at a job that provided health care so we got on independent insurance.   We have had it for the last 7 years or so.  With the advent of the ACA we needed to change how our insurance worked.  In order to qualify for tax credits we had to change plans.  Our old plan became way too expensive.   Changing plans meant that my wife and I would need to be on one plan and my girls on another.  This has worked out only because my girls, praise God, have been healthy.  In the less than a year that we've had ACA coverage the girls have been added and dropped and added again to their coverage no less than 5 times.  The most recent shuffle is going on right now.  That's what has prompted this post.  Hopefully the shuffle is over with this latest roundabout. 

To make matters more "fun" this is the time frame in which I was diagnosed with Cerebellar Ataxia.  Now we get to add that to the "fun."  Actually, I consider myself extremely blessed in all this.  I count my blessings all the time and they always vastly out-weight the crap.  Anytime I start to get flustered about the daily grinds everyone has or the ataxia not everyone has, I get cranky (I'm human), but then I think about all that's been done for me and given to me.  I'm pretty darn blessed.

Headaches of all types come and go and come and go again.  Fortunately, I've got a lot more than just myself.

Oh the Headaches - 2/17/15

I know that headaches aren't often shown as part of this disorder but oh do they add to it.  I have had headaches since age 5.  Not just regular headaches but powerful ones that would shut me down.    You'd think after having them for 27+ years I'd have figured out how to deal with them.  Problem is I super stubborn.  I know if I take an Excedrin type medication, drink something with caffeine, and go to sleep for a few hours it should go away.  Well that works 50% of the time.  Lately, I've been having headaches that are very strong.  I've even started to wake up with them which didn't happen before.

Three times in my life I've "broken down" and sought professional help.  The first time was about eight years ago.  The neurologist ordered an MRI of my head and prescribed two drugs.  One as a daily and one to take only when I felt a headache coming on.  The MRI came up with no answers regarding the headaches (tumors, etc.) and the medication made me feel very bad so I stopped taking either. 

The second time was when I went to the ataxia specialist and I told him my aversion to medication so he prescribed a medication to take only when I felt a headache coming on.  I got that medication, felt a headache coming on and took it.  I proceeded to have the second worst headache of my life.  When it finally slowed down and I could safely take more I did and it ramped right backup to as bad as it was.

This caused me to miss two and a half days of work.  So I went back to my family doctor and he prescribed a daily medication but it was one that you should be on long.  For a glorious week I didn't have any headaches!  Then came yesterday, the first day without the medication and it started absolutely fine.  When 1:30 in the afternoon rolled around along with it came another massive headache.  It lasted until about 9:00 this morning and as of right now at least, it's gone.

These headaches most likely don't have anything to do with my ataxia but they sure make it harder to deal with.  Back to the drawing board.

Specialist 1/27/15

I finally had my first appointment with an ataxia specialist at the University of Michigan.  I  went to the National Ataxia Foundation conference in Las Vegas in 2014 and they suggested strongly that seeing a specialist is the best way to go.  Now that I was able to do that I very much agree.  This is the third neurologist I've seen and though I was correctly diagnosed to an extent.  My first Neurologist told me he was out-of-his-depth, the second was too proud to admit she was also, and now this one has what seems like a plan.

I gave more blood and hopefully these test will yield the answer the doctor needs and we'll have a plan of attack.  If they don't have the answer then we'll move on to more tests.

For the time being I'll just have to wait and see.  But from where I sit know, I'm very happy that I started seeing a specialist.

What's Up - 1/15/15

Okay, okay so I didn't do anything for more than a year.  I thought I was ready at that time, I was wrong.  Am I ready now?  I have no idea.

I have an appointment, latter this month, at the University of Michigan.  They are one of the very few places that specialize in the study of Ataxia.  I am blessed to be located close enough to UofM to make an appointment easy to attend.  I've been poked and prodded a ton of times so hopefully they'll (the doctors) have most, if not all, of the information they need.

I'll attempt to keep this up this time.  For now I'm going to shoot for one short post a month. (Tough, I know)  If I'm able to do that, maybe I can do more.

International Ataxia Awareness Day

International Ataxia Awareness Day

"The "International Ataxia Awareness Day" is an international effort from ataxia organizations around the world to dedicate September 25th as International Ataxia Awareness Day. Each participating country, state, or individual may have a specific plan for this event. The goal of IAAD is for every individual to participate in some activity, creating awareness about ataxia. You could share something you know about ataxia with one other person who has never heard of it, educate a group of people by speaking at a school or civic group, contact the media, or raise financial support."

Not many people know about Ataxia including myself before I was diagnosed with CA.  I only recently found out about the awareness campaign and wish I could have done more but sharing this is a start.  The more people are aware of the problem the more effort can go toward ending it.  Knowledge is the foundation of support.  Thanks!

Without Order

“I don’t know what you’ve been drinking but…”

They don’t know any better.

They didn’t mean anything by it.

Wait, why would you say something like that and just walk away? 

Why wouldn’t you wait for a response?

I got to go.

            I wasn’t drinking.  I don’t drink.  As of the summer 2013 I was diagnosed with cerebellar ataxia.  The long and short of it is that the cerebrum, the part of the brain that controls movement, is deteriorating causing difficulty with motor functions.  In my case it is apparently caused by a mutated gene.  Basically my motor skills have been decreasing since roughly the end of high school.  For me that was 1999.  The changes have been slow and looking back through the years I can see were things changed.  I just learned how to adapt what I was doing so I could function in the best way possible for me.

So Why Blog?

            This is rare, and it sucks, and it’s confusing, and it’s maddening, but at the same time it opens your mind to looking at things in a different light.  I thought, if for nothing else, maybe someone else with this situation will find this blog, comment, engage in conversation, vent, whatever.  I need an outlet for what I’m feeling and this is one of the ways I’m going to do it.  I count myself as extremely blessed.  God has given me the most wonderful wife and family and friends.  Even with all these things, I still feel angry, sad, confused, frustrated, tired, all that at times.  I don’t think there’s anything wrong with having those feelings but I’d like to avoid them as much as possible.  When I can’t avoid them, I’ll share them.  I’m also going to share all the good stuff. 

How’s This Going to Work

            I’m going to share how I’m feeling, what’s going on, and maybe some suggestions or what’s working for me.  This junk is rare, so I realize there won’t be many readers, but I’m going to post regardless.  My hope is that someone or a few someone’s will find this blog and it will help them like I think it will help me.  Depending on what statistics you read this junk affects about .05% of the population of the earth.  So let’s get together and let’s talk.

            I don’t plan on posting daily but we’ll see.  I’ll definitely be checking in on it multiple times each day.

Thanks

            Thank you in advance for anyone who reads or participates with this endeavor.