My metal miracles

So, March 15, 2016 is a remarkable date in the history of my life.

I got a toradol shot, emergency style, 2 days ago which did not touch my migraine pain.  If it did, it was not enough for me to notice and the agony I was in did not abate.  I reached out to some of the support groups I'm in to see what others experience with these shots have been.  I was informed and guided into daith piercing, which I had never heard of.  It is a specific fold making up the outer ear.    I read as much as my smashed up brain would allow that evening about the piercing and figured I had nothing to lose by trying.  On Yelp, I found the highest rated tattoo place in my area which was also, ironically closest to my home.  Piercings, $20 each.  I didn't really have the mental capacity to be worried or scared.  On the ride there, I wore 2 pair of sunglasses and kept my cloth hat over my face to protect myself from daylight.  I prayed "God, please just give me a peircer who really, really knows what they are doing and have compassion for me."  We, Tim and I, arrived at our first tattoo shop inside of 10 minutes.  I was clearly in agony and the piercer, Mitzi brought all the paperwork to me to sign.  When we got back into the piercing room, she told me that if I was doing this for severe headache relief, she highly recommend I do the tragus instead of the daith.  Since I had no expertise from which to draw, I let God guide the situation and said, "If you think that is better."  She explained that the daith, while being a pressure point that does relieve headaches, it is a more minor point than the tragus pressure point.  So, on we went.  I was laying down and she did the right first.  It felt like mostly a lot of pressure.  Not pain at all in relation to how my head felt.  Then she went to the left.  So, who knows why, but on this side, thank God I was holding Tim's hand or I might have writhed physically from the pain.  I did see stars from the sudden pain shock.  It felt like some concussions I have had, only prolonged for about the count of 5 or so.  Agony, no dressing it up.  But, here is the thing.  Inside of 30 seconds, I was able to sit up with my headache having gone from an 8 to about a 5.  I could take my hat off and look around with just one pair of glasses on.  I could speak clearly and articulately.  It felt like someone had just pulled a plug on my migraine and it lost it's power.

When I got home, I did take an NSAID for the dull ache of my ear that was beginning and it was important to keep any swelling or inflammation at bay.  As the afternooon went on, my headache continued to abate.  Several times I wanted to cry with joy at the miracle of it.  But, I did not, not wanting to the the remaining headache any fuel.  By the time I went to sleep...... my headache was GONE.  At a 0.  Entirely and  completely gone.  With no medication.  With no side effects.  For $40 bucks.

Today, I rode to Dallas with Tim to keep him company on his way there for a job interview.  I wore my hat and one pair of shades, like a regular person.  I enjoyed thoroughly the glorious spring day in Texas.  We were gone a few hours and I still feel entirely well, headache-wise.

If you've never had a migraine, I'm going to try to relate what this day and a half have felt like.  When I went into the shop there was a super heavy-duty length of chain wrapped around my skull being tightened from both ends like a tug of war by two invisible teams.  When she did the right side, one team let their end slack.  When she did the left, both ends of the chain were dropped and the chain began to fall away.  As the day wore on, the rest of the chain fell off of my head onto the ground, to be left behind.  If you can imagine that, you're pretty close to the reason I feel like I have two little metal miracles in my ears now.

I had a friend over last weekend who had brain surgery and now has 4 electrodes permanently implanted in her brain and an electrical tube running down her spine to a battery power supply implanted in her hip.  She did this for migraine relief.  It's called the Omega procedure.  Invasive brain surgery.  And I was thinking about it.  I was on that path.  But now, here I sit, happy as a clam, if clams are happy, with my new pierced tragi.  My new favorite word.  Tragi.  

If I have ever felt more blessed, I cannot remember it.

Have happy, happy days.

Change in life

I have an article on my refrigerator entitled 5 Ways Having Fibromyalgia Makes You Awesome that I read every few days to remind myself of my "superhero-ness".  (I have a migraine right now that feels like it could literally light me on fire if the wind blew the right way, so my communication ability may be limited.)

I'm waiting on call backs from 2 doctors today that I HAVE  to get because, tomorrow is the last day I have insurance.  My medicare probably won't kick in until April 1 according to the nice Social Security lady.  I could have dealt with this anytime last 2 weeks since Tim's layoff but, the migraines abated.  The weather was lousy for so many days in a row.  No sunshine.  And, headaches were both less frequent and less severe.  Yesterday, finally we got a sunshiny gorgeous day and WHAM.  I feel like I laid my head down and let a semi run it over a couple times.  Yeah.  That bad.

So, anyway, I now don't have any meds to rescue me from one nor can I go to sleep with this kind of pain, because I took the last of that drug yesterday, so here I am.

The little article linked says that I adapt well to change, its #4.  To that I say, what is the option?  The way that some fibro pain works for some of us is like this.  It travels. It feels like it is in my bloodstream and just every now and then, there's an explosion.  It can go from my elbow, to my knee, to my eyeball, to my toe and then my tooth inside of 2 minutes.   I swear this is not exaggeration.  And rarely is the last location done before the next starts, that is if I'm granted only one- at- a- timers.  I won't even go in to multiple site incidents.  Just imagine for a moment that someone stabbed you directly in your eyeball, say about 5 times.  And now add to that invisible person #2 who, on the 5th eyeball stab from the first guy, began stabbing your toe 8 times.  Either one of those would floor any of us, on our best days.  Our brains become overloaded with the shock of the pain of it.  Well, that's why I don't talk so good sometimes.  It's why I don't drive.  It's why I don't work and I can't be relied upon to make decisions.  This kind of thing is an entirely spontaneous occurrence in my body.

Human beings love stability, security.  We seek it from the time we are young.  We find what feels good and comfortable and familiar, and we want to STAY there.  We resist changing.  It's why habits are so hard to break.  It's why loss of loved ones is so catastrophic and why divorces or job losses are major life events that can set folks on a tragic spiral downward.  Change sucks, we're taught.  But, I have had to re-learn lessons about change.  I have had to give it a second chance and let it prove to me that it doesn't suck.  I am in a situation where I must hold it's hand, if you will.  (Saying I'm stuck with it is so negative.)  I do not know from moment to moment, quite literally, if some invisible, unexplainable, stabby, ice-pick pain will pierce my body, or which part of my body, or for how long.  I just know that it is likely.  I also know that I have survived it every time so far.  It isn't fun.  Sometimes it makes me scream out loud, which can be embarrassing if I'm in public.  That kind of uncertainty is a ginormous bag to carry around.  I have been blessed that I am finally able to be brave enough to let Christ carry mine.  Now, I just live with the fact that I have no idea what lies ahead in the next 5 minutes, the next hour, the next week, but I do know that how I feel will likely vary greatly and possibly to an extreme which feels unthinkable.  Also, I know that whatever else changes in my world, even if my flesh should perish, (and my brains begin to seep out my ears which feels like it could happen at any second)  the one and only thing which will never change is His love for me and His promise to never abandon me.  It is simply that which keeps me riding the waves of all the other changes.  So, the article gives me kudos for adapting well to it.  But, to it I say, how can I not?

As my spouse searches for a new job for the first time in 18 or 19 years, as I navigate changing from private health insurance to Medicare, as we roll through daily life and I hide from the sunshine, which I seem to be allergic to, I give thanks that we are together.  I give thanks that I keep surviving, and that if only one person benefits from these words, I feel I haven't wasted my time.  I give thanks that I know it is not my job to understand.  It is His.

 

Looking forward and back about vacations

When I was first struck with this huge change in my health, I did not go on vacations for years.  I did not want to be in an environment that was uncertain, didn't want to be limited by my abilities in doing the activities offered.  I certainly didn't want my household to spend the money on something neither one of us could fully enjoy.  I wonder now if that fear alone contributed to how miserable those first few years were for me.  Change of scenery is so important.  Doing something different once in a while is so special.  It creates memories.  Those memories supply our minds with things to dwell on when we get back to the regular day to day life.  Yesterday, for example, I was in just monumental physical pain all day.  A day like that can mess with your head if you let it.  It can say "oh, you won't be able to sleep or get comfortable in a hotel room.  You won't be able to do this or that in your wheelchair.  Hubby will be burdened with helping and attending to you.  You won't enjoy it."  That is powerful because it is so believable.  So probable, if you let it be.  It's just fear.  Fear of the uncertain.  I have come to grips with living every day, hour-to-hour with uncertainty.  I am no longer afraid to make plans, but I make sure they are possible to cancel and get refunds.  Further, I rarely cancel them.  This is my only life.  If I never do anything, go anywhere, because of this pain, frankly, it isn't much of one.  I've discovered that adventure is in perspective.  What is a full day outing and adventurous to me isn't the same as it is for you or for many.  That's when I realize how horrible it is to compare myself, my life with others.  It's dishonest and disrespectful to me.   I am my own.  It is apples and oranges.  I am entirely unique and so my vacation experiences will be entirely unique.  Will they be the ideal experiences of the TV commercials? No.  Will there be huge and uncomfortable obstacles in my path? Count on it.  Is is still worth doing?  Blessedly, yes, yes, yes.  Part of getting through yesterday with my head on straight was the fact that I have photos of our few most recent vacations all over my house.  So seeing them reminds me that I can go places and enjoy the world at large.  I can leave these walls safely and fly and ride, and figure out how to successfully get enough sleep.  The simple fact is that whatever pain is present in the traveling, would likely still have been present had I stayed home.  So, as I look forward to next week, to seeing new places and getting together with family, I am not afraid.  I am comfortable not knowing what I will feel like.  Fully aware that the answer might be like crap on a cracker.    I will start making my lists today.  I will look up the weather like "regular" people do.  I will write checks to the pet-sitters.  I will do small things each day to try to prepare because I won't be able to do it all at one time the day before.  I am not afraid of being a disappointment to anyone I visit with.  I am comfortable in the knowledge that they love me and hope they know it is hard to interact with me sometimes.  Frankly, it is quite hard for me to interact with myself sometimes, which is profoundly scary.  I know that whatever happens, I will survive the discomfort.  I will be cared for and even in worst case scenarios where I picture myself entirely helpless, I have grown so close to the Lord that I know I will never be abandoned.  There is no circumstance imaginable, day-to-day or in an unknown place, where He will not protect me from evil.  My body may feel horrible things but, my body is only one aspect of me.  I am more than my painful body.  And I am sooooooo looking forward to this vacation.

Grateful that there are people in this world who love me and that I have the means to get to them and to expose my mind to different things and places.  Grateful that I am walking this morning.

Have happy happy happy days.  Decide to.

Rain and hope

Super short and sweet wish today.  For the first time in a LONG time, I had to get straight out of bed and into my wheelchair.  And I'm so glad.   How could I be glad of such a thing?  Because I have an idea, its just a hunch mind you, that if my brain is so busy with all this pain in my body, I might not have a migraine today to deal with.  I just might slide by with debilitating muscle and joint pain. Easy-peasy.  lol

In all things, give thanks,
Have happy days
M


Post Script:  In fact, I was correct yesterday in my hunch.  I was in a LOT of physical pain all day but, none was ever in my head.  I was so grateful.  But today, even though it's not wet out, it's still pretty cool and by mid-morning, pain is holding both my hands.  Worse, I feel it pulling me emotionally.  I am grieving the fact that there's this trade off.  I miss my old health so much.  I am so sad today.  And, knowing that if I let myself cry, which I need and want to do, it will probably trigger a migraine.  lol.

M

You are my sunshine, my only sunshine

On February 2nd, Migraine-zilla of 2016 finally broke.  I had NO headache that day.  And I think I may not have stopped smiling until I was asleep again.  When Timothy got home, I ran through the house dancing around and jumped up on him kissing him.  He said that he couldn't remember the last time I smiled like that.  See, I was right.  It did pass.  It was a season.  And even if it, rather more realistically when it returns, as long as I can remember that key element, I will be ok.

It was proof to me that just as we, humanity, have the ability to forget how pain feels, we also have the ability to forget how wellness feels.  I could not remember ever in my 47 years of life having a day as glorious as yesterday.  Truly.

This update today is just going to be short because I am determined to sweep my floors today.  But, I wanted to say that I asked my doc if I could try my hydrocodone for the pain because I had been in the 9 out of 10 range for days.  He said yes, and after two doses, voila.  I could go out in the SUNSHINE!!!!!!!  Now, it is my deep desire not to use a narcotic for my pain, to cope as best I can without opiates.  But, there is a HUGE amount to be said for quality of life.  My quality was below what I am willing to sacrifice.

When I used to work in a group home for the Pinellas County ARC with elderly mentally handicapped folks, Jessie, who had Down's syndrome and I were particularly close.  She was in her 50's which is quite old for that particular illness.  We'd stand and hold both hands together and sing to each other the You Are My Sunshine song.  She's shining down on me now for sure.

Grateful that for 2 mornings in a row, I have not had to medicate for head pain nor put dark glasses on to keep beautiful light at bay.  Grateful to feel normal and well, besides an ache or pain here and there.  Grateful that I actually forgot how it feels so I am actually surprised as to this new blessing.

Have happy, happy, happy, days.  Trust in HIM.  HE will not abandon us.

The more pain there is, the more you can handle

So, about 5 minutes after waking up this morning, the full bloom migraine exposed itself.  I told myself last night that blogging about this and forcing myself to look at a bright computer screen was not important enough for the discomfort but, I have decided now that I need to document my success.  For me, if for no one else.

I have had some size of a migraine every day since Jan 6, 21 days ago.  And between early December and Jan 6, most days.  I didn't document them.  I rate my migraines in the visual of a rose.  I know, its wierd, something so luxurious and beautiful and treasured, and yet it fits my headache metaphor so fully that I hold onto it.  Mostly when I talk to other people, I describe my migraines in sizes of food.  Almond sized and growing.  Egg sized and steady.  Grapefruit sized, watermelon.  You get it, I'm sure.

In previous years, I have had about 15-20 min of lead time from when I first feel one coming until it is bloomed.  I have time to medicate and try to nip it.  None of my medicines work currently.  I have a doctor appointment on Feb. 11.  I also used to be able to get some relief from cold towels around my head.  Now, nothing.  And, finally, I used to be able to sleep them off and wake up newish.  Again, denied.

I now have the experience of sledgehammer migraines.  If I am lucky enough to be without one for an hour or two, I can obtain one by blinking, it seems.  Wham.   And, its relatively blinding.  Also, it inhibits my mobility further than just any bodily pain will do.

Trying so hard to keep us in clean dishes, clean clothes, fed pets, clean litter, clean my own hair and body, those things have to be scrambled through in the first 20 minutes of being awake in the morning.  Also, while the migraine is just coming out of rosebud size.  About a walnut, or small egg..  Already wearing 2 sets of sunglasses in my home.  All the shades are drawn.  I wear my prescription sunglasses always now.  My regulars are put away.

I did get the peace of a small nap last evening for about 45 minutes at 7 pm.  Then I woke, and did my bedtime things.  Not being able to fall asleep again because of the head pain, I thought well, what the hell?  So, I came out and, in the complete darkness, and with my shades on, did a load of dishes, and two more loads of laundry.  Folded all my laundry and cleaned my kitchen counters, appliances, back splash, etc.  This is with a migraine about orange sized.  But.  without the harassment of light or noise, I could do it peacefully.  There was nothing to retreat from and I found myself relaxed in my pain.  So, I was able to get up this morning with all that done.  It was fabulous because, about 10 steps out of bed (specifically to my bedroom door) the sledgehammer hit and I'm in full bloom.  So, now I just had to get us all fed, which I find I can do without undue suffering.  The beauty of having lived in so much pain for so long, is that I can live in a lot of pain currently.  No fear.  No worry attached to it.  Just making my way through the day.  That's why it's important for me to sit down and stare at this bright screen.  I need to see that it can be done.  That I have done it.  I have the kind of head pain that literally would have sent me to the ER previously and would do many folks but, I am finding ways to cope.  And I am stripping it of emotional power.  Key element.

I fed us all, did litter box duty, brushed my teeth, washed my face, and had 3 somewhat coherent conversations with 2 doctors offices so far today and I am writing this.

Grateful that I have such a safe, comfortable environment to live in.  Grateful to be supported by a loving and understanding person who never asks more of me than I'm able to give.  Grateful for those who love me and pray for me, knowing that these headaches will pass sometime.  They must.  To everything there is a season.  This is clearly migraine season.  lol  Off to lie in silent darkness and convo with The Big Guy.

Have happy, happy days.

Tears from joy, my beauty secret

https://www.facebook.com/StevenJoTV/videos/1188786691150807/?theater

Above is the link to the clip of today's joyful tears.  I love to cry joyful tears, it feels like I'm leaking silk or something.  But, unfortunately, even though I have the life situation to be able to do it anytime, since I don't have to work or raise children, it can bring on a lot of pain.  So, while it feels like the most beautiful gift to be in the presence of the love of the Lord, as the above video made me feel, it also keeps me aware of my challenges and limitations.  It's nice, no, more than nice, to find that my list of blessings and my list of challenges match.  I am.  I try each day to grow closer to Him.  I use the energy I find during each of my days to do what I can to keep myself fed and keep us in clean clothes.  If I have more, I do more.  But, I no longer lament.  I no longer wish.  I no longer yearn.  Instead, I pray.   Really its more like mental chatting than prayer.  I'm not too much into the formal kind, unless my thinking is so impaired that I cannot come up with my own original thoughts.  Then, I always rely on my Hail Marys.

I got one chore done today which I've tried to get done since Christmas.  And I'm happy with it.  New tags for my little essential oil bags on Etsy.  Not a very substantial accomplishment for some out there, but for me quite big, and I'm quite proud.  Others can have different sources of pride.  Every single one of us has a burden.  Mine is physically painful.  I didn't come from a broken home, I have never been homeless or hungry.  I wasn't born into a country at war.  I have a mind that can learn.  I believe in God.  I am not addicted to anything.  (OK, maybe I am addicted to 10 mg of Valium at bedtime.  Can't sleep without it at all nowadays.  Also, addicted to Mozart in the Jungle on Amazon Prime.)  I am stable mentally and emotionally.  Physically, I have taken great care of my body during my life and I enjoy the fact that I look much as I did when I was 30, seventeen years ago.  But, I do live in pain.  That is my thing.  Sure, there are some other things in my past which I have battle scars from to prove my fight.  But, in fact, they are on the blessing list too.  Those battles built me.  These battles now continue to build.  And a video like the one above just gave my skyscraper another floor.  It affirms my life.

Grateful that I have the capacity to love others and to receive love in return.  Grateful for the humility learned by dependence, even if it had to be forced on me.

Have happy happy days