Friday, May 27, 2016

Scared

Okay...truth be told, I'm scared.

There, I said it out loud.

I'm only saying it because I think there's power in admitting fear. There's a measure of control in the admission. Ironic, huh? :D
Phone number removed because this is a public blog!

I bought a medical alert ID bracelet.

I hope it's wasted money, but I have read several stories about different people having issues.

Okay...seizures and hallucinations. There, I said it out loud.

Seizures and hallucinations.

To be clear, I don't expect to have seizures and hallucinations. But those are indeed symptoms.

AE is rare enough there isn't good information out there to know what percentage of people have those symptoms, at what point in the disease progression people have them, or any other specifics. But, if I were to have a seizure, giving me anti-seizure medication wouldn't do anything to help. I would need steroids.

There is also a slight chance I could become lost and not know who I am, not know how to use the phone, not know my husband's name. Well...there's not a slight chance, that happened already. ((In case you missed that story...I pulled into my driveway one day and forgot how to open the car door. I was struck with the thought that I didn't know how to get out of the box I was in. I started looking around trying to figure out how to contact "that man" (my husband whose name I had forgotten) so I could get out. It didn't last long. I "found" the door handle and remembered Dwayne's name fairly quickly. But forgetting those things even for a minute was the final straw that caused me to make the initial doctor's appointment.)) So...if that were to happen again, and last longer the next time, I wanted to have a safeguard in place.

Yup. I'm scared.

When one thing happens one time, you can chalk it up to a fluke. When various things happen together and they add up to something that probably isn't a fluke...it's harder to ignore. (Don't get me wrong, it's still possible to live in denial, it's just hard to breathe when your head is in the sand.)

Wearing this bracelet is a reminder of those symptoms and a reminder that I'm scared. As much as I would really like to ignore what is going on, as much as I would like to keep my head buried, as much as I would like to think the diagnosis is wrong and there is some other explanation...I can't. The truth doesn't change just because I refuse to believe it.

The incidence of AE is about 1 in 100,000.  The population of Huntsville is right at 180K. That means it's probable only one or two people in this town have this thing. There are about 4.8 million in Alabama, that means about 480 have it in the state. 32.4 million in the US and a wopping 740.4 million in the world likely have AE. Am I really one of 740.4 million (out of 7.4 billion total people) in the world who likely have this thing?

If I am one of these...I can reduce my fear of the symptoms down even more by supposing the incidence of one of them actually happening. Maybe the chance is 50% it will happen to me, so just one chance in 64.8 million. Maybe it's only 10% which makes it 1:74 million. I think I like those odds better but playing with the numbers doesn't really change anything at all. (And, my math and or my logic is probably WAY wrong...)

No matter what the nubmers are, if the diagnosis is wrong or if I don't have the symptom, buying this bracelet and being scared really didn't matter in the end. If this isn't what the dr thinks it is. If there really is something else going on, then all of this is a silly, completely unnecessary precaution. I'm okay with that. I'm okay with finding out I really have a hormonal migraine exacerbated by stress and I was wearing a dumb bracelet for no good reason. Because there's no harm done in that case.

Wearing this bracelet won't help me not have a seizure.

But what if I do have it, and what if I do have an "issue"? Wearing the bracelet might help me get the help I need faster.

Matthew 6:27 says, "..who of you by being worried can add a single hour to his life?"

It think the key is to be scared and to not worry. It's okay to be scared. It's okay to admit it. It's okay to let that fear help me to make preparations and take precautions. But worry does me no good at all. Healthy fear on the other hand does serve a purpose.

Thanks for stopping by and sticking around.

Tuesday, May 24, 2016

Fairy Tale Life

I tell my husband all the time that he has given me a fairy tale life. While it's true, I live like a princess (for the record, Queens have more responsibility than princesses do), the bigger truth is that I've always lived a fairy tale life.

Fairy tales don't start out "happily ever after". That's the way they end. Because I know I will spend eternity in Heaven, that is certainly the way my life will finish up. But fairy tales start in a far away land, long ago, once upon a time. They are fully of hardship and challenge. They all have an evil-doer. They all have a moment when you wonder if this will be the fairy tale that doesn't quite pull out of the nose dive and ends in flames.

I've had life moments when I felt like the pre-Charming Cinderella. I've been the "evil" step-mother. I've lived deep in the woods, sleeping my days away. I've kissed a lot of frogs. I've let my hair grow, and I've chopped it off. I've been swimming in the sea and have soared in the sky.

And, I know I will get to my "happily ever after" one of these days.

In the mean time I'm living the day to day life of a fairy tale princess. Some days the sun is shining and the birds are singing...and then there are days the enemy is coming to chop off my wings.

Wednesday, May 18, 2016

Holding Pattern


I went to a follow up with the neurologist yesterday. Before I even left his office they had called Mayo with the referral. Mayo will "review my records", which will take 7-14 days, and get back to me (hopefully) with an appointment date. It can take up to six months to get in and the appointment will be about a week long thing with back to back tests and doctor consults. At the end of that week I should have a firm handle on what is happening in my brain and what the best treatment plan will be.

In the mean time...I'm in a sort of holding pattern. Because my response to the steroid IV has been so good, and the return to symptoms happens after about 2 weeks of being off the steroids, the doctor has changed the treatment to 1/2 the dose I was getting but twice a month instead of once a month. I'm really hoping I get as good of a response and that increasing the frequency makes the effect last longer.

I'm also hoping the appointment at Mayo doesn't conflict with Dwayne's Ironman (end of September). Make no mistake, my health, and that appointment, does take precedence over IMChoo, but I would really like it if the choice didn't have to be made at all.

The important thing for me to keep in mind is that "holding pattern" doesn't mean that life stops. When I have having to wait for something major to happen, I have a tendency to let other things fall apart. "Well, I'm really sorry I didn't wash any clothes for three weeks, I'm just anxiously waiting for X to happen." (yes, that's an exaggeration) (maybe)

Imagine...you hear a ticking noise. You aren't sure, but it sounds like a clock. Or maybe a bomb. You aren't sure, but you've been told to wait to find out. Yes, I'm being a bit melodramatic...have you met me?

What I do know:

  • there is something going on in my body that is impacting the way I think, see, feel and function. It's not HORRIBLE. I could get by without ever telling anyone something is wrong but people who know me well would notice something is "bothering" me.
  • whatever it is that's wrong responds to steroids. That magic juice makes me feel like ME.
  • a very smart doctor has said, with certainty, that thing that is wrong with me is Hashimoto's Encephalopathy (aka Autoimmune Encephalopathy)
  • my very smart doctor has said there are other doctors who have seen many more patients with this who will know the best way to treat it so I'm being referred to the best of the best
  • LIFE GOES ON
I can't get hung up in the thought that I am waiting "UNTIL" I go to Mayo. I have to keep moving forward.

Thanks for stopping by and sticking around!
:D