What's in a Name (Health update)

This post is long, and written mostly to document, for myself, the events in the last week.  Feel free to skim. 

Last Friday, February 1st, I had the "trippiest" migraine aura. It was a beautiful moment in time, actually, and I hadn't had such a crazy beautiful cacophony of experiences in a long time and actually took a photo to remember the moment.

See it's good I took a picture, because guess what, it was WEDNESDAY, January 30th . Around 2pm.

If you are unfamiliar with aura, it is visual symptoms that generally indicate that a migraine is on the way.  Though not always. This particular day, the sun was warm, the wind was cool, and the sky was beautiful. I was laying on the back patio trying to get some sun to help with my depression. I was looking at the sky and noticed that a little shell shaped "thing" was flitting around in my vision, I started to see spots, (in my head I knew this was aura, which confused me because I had already had my monthly cycle which my migraine typically precedes) Well, the aura began to put on a show. So,  I just lay there wishing I could record it because it was beautiful.  The spots lined up and were layered from me to the cloud and then moved up and down, closer to me then closer to the clouds. Dancing spots. I was sad to see it go.  It was crazy.  I moved on about my business the whole show lasted about 10 minutes. 

Flash forward to Friday. I had to run errands for our business.  While trying to get on the property at an exclusive resort, I had to wait for the computer system to register. The guard told me to give it 20 minutes.  He sent  me to wait in a lot next to the guard gate. While waiting, I felt it coming. First nausea and then intense pain in my head.  (my classic migraine is "dull", this was not) I describe the pain as "twangy", intense and coming out of the top left side of my brain. As the pain grew, I knew there would be no way I could do the task I was sent to do. So I headed home, well the pain and nausea were so awful I almost stopped to have someone come get me. However, I was too far away.  I had to drive. In my altered state, I got lost on my way home. Not totally lost, but went the wrong way and thankfully saw a road I recognized and realized I was going the wrong way. My phone was dead. It was a mess.  I couldn't get in the bed fast enough once I finally made it home.

The next morning, Saturday,  I felt better.  Went about our day completing the task I failed at the afternoon before.  Well, buy 2pm the same thing started again.  Same cycle as the day before. Except I didn't get lost because Polk was with me :)

Sunday, I awoke to worse weakness on my left side but no headache. (I am always sensory impaired on the left side-with slight weakness--I describe it as if on a scale of 1-10 the weakness and difference is a 1 {normally}) This was a 3. I could definately feel a difference. You could see a difference in my face. 

Compare the sides of my face. Right down the mid-line.

Most people look at the picture and say, you look beautiful. Thank you. I, however, see (and feel) that my left side (right side of picture) is different. You will see my cheek is not equal to my other side. My smile isn't the same if you compare side-to-side. I am grateful it isn't worse. However, its really weird and not fun. 

Now, the entire left side is evenly impaired.   It's just you can "see" it in my face.  My whole side feels a little more difficult to move.  Like it's dragging (but it isn't visually)

So, it continued like that Sun, Mon, Tues...then on Wednesday morning I awoke and thought "I can't move my arm" I was worried I had had a stroke and was paralyzed. For a second I thought "Oh no, I can't move" then as I rolled over I realized my arm could move it was just really really heavy.  So, the weakness and numbness had worsened.I was keeping my baby grand that morning.  When my daughter walked in, I said I am not sure if I can hold the baby let me try, well I could.  I was over compensating with my right side.  So...I kept her.  I noticed my head was hurting.  This isn't all too unusual but the worsening weakness was concerning. Well, as the morning continued I was googling and found Hemiplegic Migraine. 

How had I never heard of this? It sounded just like me. 

I was worsening, and I have to tell you, I feared a stroke was coming. Last stroke I was not near this bad and BAM! So I was terrified.  The scariest thing is feeling it in my throat, half is numb, and occasionally I would choke on my spit. My voice didn't sound like me (though others said they couldn't tell) I guess it was more a "feeling" too.

Well, I knew I was in a cycle and needed to get drugs to stop it.  Due to insurance, or lack there of, I had to go to the ER.  My daughter works a Mayo Clinic and was getting off at 1:30 and said why don't you come to our ER? That would be the fastest for sure, as the headache was intensifying. So, I made arrangements for D. Packed the car and headed to the ER. 

Aside--let me tell you- if you want top notch fast service in an ER-have a stroke and you are in! I was moved ahead of frail old people in wheelchairs. I felt bad, but a stroke is nothing to play around with. 

They performed every test under the sun. 

Here's the admission.  I did this to myself.  Not intentionally, but it's still my fault.  Remember that post about insurance-yeah-I don't even WANT to go there.  However, I have to briefly.  My medication is expensive. Especially expensive when you are self-employed and can barley keep your employees working through off-season.  So, I stopped taking my meds.  

My line of thought "who knows if they are even helping. They put me on them after the last event, but I never took meds like this before so who knows if I even need them, I dang sure can't afford them, I'll just stop and see what happens, probably don't even need them, wouldn't that save a lot of money"

I know I know!  

So, they were convinced (as was I) that this was a (they said it not me) Complicated Migraine  and to take my meds and follow up with neuro. The nuerologist said that I should get genetic testing to confirm the diagnosis of Hemiplegic Migraine. 

Anyway, to make matters worse the ER doctors were going to switch my meds to something more affordable and then when I was discharged said my meds were on the $4 list at Wal-mart so they didn't have to switch. Commence me flipping out and actually doing math, which I hate, to see how much moeny I could have saved had I had that little piece of information.  I left feeling so ashamed of myself. I had not only stopped my meds, but could have afforded them, I was sick and I could have been better. 

About the rx: Well, that wasn't exactly true. The dosage that I am on is not $4 at Wal-mart but it's $85 so I have been saving money using the Walgreens Rx plan and getting it for $65.  However, I am going to see if my doctor can adjust is so i can take 2 or the 120mg which are $4 and stil save. Anyway. 

So, now it's been a week.  I don't know how long this will last.  It takes patience with myself and patience from others. 

I am trying to get into the Neuro ASAP-but that is no easy task. Don't even get me started on insurance believe me that is an entirely different post that I do not have the energy to type.

To help others understand I figured out how to describe how it feels to accomplish tasks:

You know those weights that you strap to your ankles or the little hand weights that women use for toning.  Light, 1-2 pounds.  Well, everything I do feels like my left side has a weight attached.  Like right now typing: It feels like I am wearing a weighted glove and my fingers on my left side have to work 3 times harder than my right to do the same task.  Holding up my phone, with my left hand,  feels like holding a 5 pound bag of sugar to my ear.  I can do it. It's just exhausting. 

Yesterday, I wish you would have seen my folding D's laundry. It's like every little 4T shirt weighed 2 pounds. Sort of funny.  I did it though! However, the second load that needed to be folded had to wait. I was just too exhausted.

Friday:I have a little more movement
Again, compare side-to-side
Chin line, lips, etc

So, I feel like my condition has a name. HEMIPLEGIC MIGRAINE A confusing name. More frustrating because I am finding out from other migraineurs that many doctors have no experience with this rare neurological disorder.  I am sure my neurologist is familiar, he is the Program Director of the Neuroscience Institute. He calls it "complicated migraine".  I just wonder WHY he hasn't called it Hemiplegic Migraine yet. I will know soon enough.

What's funny, is looking back at the time of my last event I even called it a Hemiplegic Migraine and still never really put it all together.  IT'S NOT JUST A HEADACHE

A name is important.

By having a name, I have found a community of support.

By having a name I can tell people "Google Hemiplegic migraine" and they can read about it instead of just looking at me like I have 3 heads. 

Oh, and back to juicing for me.   I need to do this with all that is in me!  I MUST JUICE!

This morning my like-a-daughter posted a thing on FB by one of my favorite devotions "My Utmost for His Highest" I thought it was fitting for how I was feeling:

Are You Exhausted Spiritually?

The everlasting God . . . neither faints nor is weary —Isaiah 40:28

Exhaustion means that our vital energies are completely worn out and spent. Spiritual exhaustion is never the result of sin, but of service. Whether or not you experience exhaustion will depend on where you get your supplies. Jesus said to Peter, “Feed My sheep,” but He gave him nothing with which to feed them (John 21:17). The process of being made broken bread and poured-out wine means that you have to be the nourishment for other people’s souls until they learn to feed on God. They must drain you completely— to the very last drop. But be careful to replenish your supply, or you will quickly be utterly exhausted. Until others learn to draw on the life of the Lord Jesus directly, they will have to draw on His life through you. You must literally be their source of supply, until they learn to take their nourishment from God. We owe it to God to be our best for His lambs and sheep, as well as for Him.

Have you delivered yourself over to exhaustion because of the way you have been serving God? If so, then renew and rekindle your desires and affections. Examine your reasons for service. Is your source based on your own understanding or is it grounded on the redemption of Jesus Christ? Continually look back to the foundation of your love and affection and remember where your Source of power lies. You have no right to complain, “O Lord, I am so exhausted.” He saved and sanctified you to exhaust you. Be exhausted for God, but remember that He is your supply. “All my springs are in you” (Psalm 87:7).

So, I am off to rest in HIM!

If you care to know more about my journey through stroke and "complicated migraine" there are labels on my blog. So look on the right and scroll.  

HELPS:

Migraine aura video that also references HM (Hemiplegic Migraine) :  http://www.mayoclinic.com/health/migraine-aura/MM00659

Foundation:
http://hemiplegicmigraine.org/

Support:
http://livingwithhm.com/