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Not posting for days can mean…..

2/10/2016

  1. That I have been completely down with Migraines and just can’t get to my computer to post anything

or

2. I have not had a single migraine and I have been busy doing things like laundry, packing for a trip, running errands and taking care of a sick kid.

Luckily for me and my family I had a nice long stretch without a migraine…6 whole days!  This was the longest stretch I have had without pain medication, nerve blocks, facet blocks, etc. and no migraine.  The daily head pain was there the entire time, but at a very low level and there were even periods of time where I didn’t even notice the headache.  I felt very fortunate that I was able to be with Gideon during his week off of school (even though my increase in meds made me incredible tired).  Luckily Gideon loves to just hang out and watch cartoons and YouTube videos.  If we weren’t running errands, we were hanging out in bed watching videos.  Gideon was finally feeling better by the end of the week and went back to school on Monday…I think we were both ready for that!  With the addition of Flexeril as a nightly preventative med and increasing my Robaxon (both muscle relaxers) I slept a lot this week.  But when I was awake, I had huge bursts of energy and was able to do laundry and pack bit by bit for our trip to FL.

My migraine free days came to an end last night.  And when it came to an end, it resulted in 0-5, full blown migraine in the matter of about 10 minutes.  The only triggers that I can think of was talking on the phone and computer time balancing my checkbook.  At any rate I went straight to bed. I woke up at 3:30 am and the migraine was still raging, but I didn’t want to take any medication if I could get back to sleep.  So I put my IceKap on with nice cool gel packs and was able to fall asleep, waking up on and off, for 2 more hours.  When I woke at 5:30 am I couldn’t handle the pain anymore, so I tried Imitrex first because I was suffering from both the classic migraine (stabbing pain over the eye) and the tension migraine (Pressure and swelling around my entire head).  Imitrex barely touched it, so after a half an hour, I changed out my gel packs for cool ones, and did my morning medications plus the migraine cocktail (Toradolx2, benedrylx2 and Robaxonx2 was already part of my morning meds).  An hour later, the migraine was completely gone and I was able to complete all of my tasks that I needed to accomplish today; safety recalls taken care of my van (and we got 2 bran new key fobs…so exciting), shopping and lunch with my friend Mindy and one of the longest oil changes ever, but at least the car is all set for the big trip tomorrow.

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And now that we are pretty much packed, with the exception of the last minute stuff, I could use lots of prayers as we travel 15 hours.  Just hoping and praying for low to no head pain…but I packed my arsenal of abortive meds if I do end up with one…so I feel prepared.  We pick the boys up after school and head straight out!  We are all pretty excited!!  Just a quick picture to leave you with from our last trip to Destin, Fl…such a beautiful place!  I can’t wait to go for a walk along the beach 😉

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Hugs make everything better!

1/23/16 Friday night I had a very brief period of relief from the Migraine cocktail.  I was able to get up and eat and I even got some snuggles and hugs from my two little boys.  Love my boys!!!

1/24/16 Tonight after a shot of Nubain, I was feeling even better.  Gideon just came out, walking in his sleep, and climbed right up into my lap and fell right back to sleep and I just let him snuggle right up.  It was a little piece of heaven having my baby snuggle like when he was little.

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1 year anniversary of the first day of my everlasting migraine/headache

1/23/16 It only seems fitting that I am back in the ER exactly one year from the day the migraine began. One year of so much craziness, so many Dr visits, so many missed events, so many….

But also I am thankful for new friends, thankful tha I now have an  understanding of Chronic illness and living with chronic illness. I am also very thankful for health insurance because even though out of pocket I pay $845 a month and max out of pocket of $3000 at least I didn’t have to pay the hospital/Doctor bills that added up to over $300,000 last year.  I am so thankful for the family and friends who have supported my family and myself over the past year.

On my way to the ER after battling a 112hr migraine.  I just couldn’t handle the pain anymore and decided it was time to go in.

Waiting for the doctor at the ER.  It was one of the best ER visits that I have had in regards to a migraine.  She looked back at my chart and saw that Nubain was an effective narcotic for when the migraine cycle couldn’t be broken with Toradol, Benedryl and Robaxon.  I also told her that starting an IV was extremely difficult and if I could avoid it, that would be great.

Thankfully she really listened to me and did not insist on starting an IV or taking blood.  Instead she offered me a Nubain shot and when that took effect I was able to go home feeling so much better.  This is a picture of me after the shot of Nubain, kind of a goofy grin, but that is exactly how I was feeling 🙂

Me waiting for my family because they didn’t get any of my texts.  And although I am slightly annoyed I am so thankful for the relief.

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A Lazy Saturday at Home

The only activity that happened all day was Gideon’s swim lesson.  We had a really good talk about listening to Mr. Marty and watching and listening.  He did really great today…so proud and so excited to watch him progress!

All three boys took turns playing a new computer game called: Slime Rancher.  They all enjoyed it, but since Josiah had watched 28 YouTube videos he knew the most about it.  Even Gideon caught on with Josiah’s guidance quite quickly.

We watched all three movies: Inside Out, Pixels and most of Jurassic World  Thanks to Redbox we got the third movie for $1.00 and then I signed up for the email so my next movie rental is free!

I spent the day blogging.  I hit my 100th blog post today and have posted from January through April 30th.  Starting on May next and I want to make sure I don’t forget to post the current days so I don’t have to go back and try to remember what happened or rely on my headache journal or FB.  I can kill two birds with one stone  with posting my update on my blog and being able to share it on FB!

Love, love, love this picture of Dan and Gideon!  We were all on our electronics and watching movies for almost the entire day.  But I especially love that Gideon is wearing his party shirt and his under wear 🙂  After our Anniversary celebration last night, he decided he was going to have a birthday party for himself and that I was to call Douglas, Chase, Lakelan and Alyssa.  I asked for their phone numbers which then turned into him learning my phone number for emergencies…but no party!  I don’t think he understood in the end still why we couldn’t just invite them over today.  Oh well!  We have a plan to get some parents to give us a call to have a play date 🙂

I am so glad that I took the migraine cocktail yesterday, both so I could have a good anniversary evening, but it also stopped the cycle of the migraine, so that I could enjoy my Saturday at home with my family.  And even though I stayed up until 4:30 am last night I was up by 9:00 am today and never took a nap…the true sign of a good day.   It was only in the last hour or so that my eyes started to be strained and I felt some tension taking hold at my temples, but then I remembered the alarm going off for my 3:00 pm for my scheduled muscle relaxer, turning it off and never getting up to take the med.  So I just took the Robaxon and did a little Ethyl Chloride spray just so I can finish up this post 🙂  Priorities!!!

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The reality of Life with Chronic_______

I have had 2 1/2 days without migraine pain since January 1st. So for 13 out of the past 15 days, this is what I look like…


I have showered 3 times in those 2 weeks, brushed my teeth a few time (brushing hair or teeth causes more pain than I am willing to allow on top of the migraine pain).  I change my underwear if I remember and never wear a bra.   This is my reality!!!  And the reality for many others who suffer from Chronic Illness.

But today is our 16th Wedding Anniversary and I was having nothing to do with it, I am so over the pain. So I called my doctor and asked if I could take the migraine cocktail at home even though I have used the meds as much as I should this week. He gave me the go ahead. After about a half an hour the pain is much reduced and I am determined to enjoy our night.

Me after the migraine cocktail….


And so now we can go celebrate. Plus all my boys brought me home a new plant. It should be a good evening!!


So off to Carrabbas we go!!

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Familial Tremors and 72 hr Migraine

Sherry Dunne Weaver, Aunt Merry Dunne Blades, and  Teresa Blades Jagielski, you guys will get a kick out of this.

Last night at dinner Gideon looked over at me and said “you are shaking just like Grandma” and then he demonstrated by shaking his spoon as he took his next bite. Unbelievable that a 4 year old would notice that. I’ve always had slight tremors called familial tremors but my meds have intensified them so that even if I am standing in one place to long my butt shakes :).

Familial tremor is an involuntary shaking movement that tends to run in families. Involuntary means you shake without trying to do so.

Sherry Dunne WeaverLove this!! Josiah probably never notices!!
Heather Loose JohnsonNope he had no idea what Gideon was talking about. Such different personalities wink emoticon
Merry Dunne Blades: Oh Gideon you are so observant. Plus he must have a good memory since he was pretty little when Grama passed. Uncle Gary has the tremors really bad and I am sure it has to do with all the meds he takes but the Dr says No. Not sure the Drs know everything.  Heather, I just realized Gideon was talking about your Mom. I just don’t think of her as a Grama !!! HaHa
Teresa Blades Jagielskipeople that don’t know me often say why are you shaking, did you drink too much coffee? If only it was that simple.
Today my morning was pretty pain free, but as the day went on the pain progressed quite quickly.  A friend came over for lunch and we chatted and chatted.  Which unfortunately is one of my main triggers.  But sometimes, talking with friends trumps the fear of the migraine (that is until the migraine hits and hits hard).  The pain that followed that night was unbelievable in my forehead and throughout my entire head.  I ended up taking Toradol, Benedryl and Zofran (the migraine cocktail) in order to sleep.
The migraine continued into the next day, Saturday, and I was in bed all day, but had great difficulty falling asleep due to the pain.  The pain settled behind my right eye and lasted into Sunday morning with the same pain between my eyes and especially behind my right eye.
This migraine continues to follow the 72 hour migraine, the end of the day on Sunday I was just feeling groggy and in a fog which I learn out much later is called a migraine hangover.
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Admitted again: Plan v 4.0 – Sparrow

The word Rebound Headache” is being taken off the table at the time and the are trying aggressively to knock down the headache without using the types of drugs that could give me a rebound on top of it all. I am now in the category of Intractable headache with no known cause because it does not fit the profile of a tension headache (to severe, to long lasting), or a migraine (location and duration doesn’t seem to fit), not sinus or ice cream headache ( just the thought makes my head hurts though).

Saturday (7th) Initial Medication (The migraine cocktail):  Ibuprofen 800mg, Benedryl  and Zofran.  But alas the headache prevails. This bugger is not going to go down without a fight.

Sunday (8th): They started me on an alternate form of Magnesium known to help headaches, just like last time and waited 24hrs.   They also started taking me off the Topomax because it has turned me into a blithering idiot. I couldn’t do a simple math problem for the dr, and I had a hard time spelling my name. It was time to stop that one for
sure.