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Spring Break 2016

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Spring Break 2016 was a roller coaster for sure!  The first day was a great day with my boys.  and for that I am so thankful.  12924526_10154006279196897_6370616670055768135_n

First stop: Hangin out at Walmart and having Subway for lunch.  The boys were so excited that they got to get new silly putty and got a new back pack for my trip to Mayo Clinic…feeling pretty good today.  Lunch was really good too…we just sat chatting and enjoying each others company.

Then we made a quick stop at Hayes Green Beach Hospital to pick up my records for the last 14 months.  Then to CVS to pick up my prescriptions and then we were off to Lansing.

12919878_10154006577856897_8309008874565947101_nWe made a quick stop to drop off paperwork to get my records from my allergist for Mayo.  and then we headed over to Sparrow hospital to get my records from them for hospitalizations and ER visits.  This visit took a little longer since they were going to copy my records r12920471_10154006779886897_3690398605269991810_night then for me.  So the boys and I went to the deli counter and ordered smoothies and cookies.

On our way home, to our surprise, we spotted a Garage Sale sign, so of course we had to stop 😉  First Sale of the year and it was a beautiful day and I felt great.  Gideon got a Gideon Bible for free, so he was excited and both boys got to watch a little boy fly a kite and then let go accidentally where the handle got caught in the tree.  The kite was flying beautifully!  As soon as one of the guys climbed the tree to get the kite, they cut the line and it flew across the road.  Quite exciting garage sale!  I got a bingo seat in case I decide to pick up Bingo in the near future 😉 Two blankets and two doilies in case I decide to pick up photography in the near future.  A suet holder for the birds and a men’s travel bag for a friend’s friend 🙂  All for $5 And this was all in the first day.  Good thing we got a lot in because the days to come were not going to be much fun.

By that night the migraine began and I was in bed Sat through Tues morning.  Gideon went to Grandma’s for a couple of days and Josiah got to hang out here for the night Sunday night and just vedge.

Josiah got to invite his friend James over on Monday to spend the night…so they kept each other entertained during the day Monday while I nursed my migraine.  Pretty sure they played Minecraft all day!  But I never really did hear much from them most of the day.  So nice that Josiah and his friends are getting older and are able to keep entertained without parent involvement (someday I will regret this statement I am sure).

Tuesday night was Dan’s Birthday celebration.  We met my parents and Gideon at one of our new favorite buffets: Hibachi Grill and Sushi Buffet.  Awesome food for the price.  I finally surprised Dan with a birthday present.  I had planned on getting them for him last year for the big 40, but I was in the hospital, so I made up for it this year with a pair of Heely’s for adults…yep they really make them…and yep they are really hard to ride.  I also got him a plant stand…kind of boring, but he has really come to love his plants 🙂  We had a great night though.  My parents then joined us back at the house for a couple of days.

12936479_10154017295921897_144023479701555891_nBig deal for Gideon tonight: he lost his first tooth…actually I pulled it, but it finally came out.  He was so excited!  The tooth is in the empty prescription bottle that is so proudly holds.

Wednesday: I woke up feeling pretty good, thank goodness.  It was the only day that I had made plans that I could truly keep them.  We met up with Gideon’s friend Douglas and his brother and mom at McDonalds for lunch and then we went to the free movie at Eaton Theatres “Rise of the Guardians”.

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After the movie we came home and did some house cleaning.  In the meantime I got a hold of my friend Dawn and she and her boys came over for the evening for dinner and to have birthday cake to celebrate both her son Brady’s birthday and Dan’s birthday (we were too stuffed the night before to eat ice cream cake).  And then I proceeded to help Dawn with her taxes which finally scrambled my brain.  A long, fun and exhausting day.  But I guess it was good that we got it all in because the next three days I was pretty much down for the count.

My mom and dad stayed through Thursday morning and got all of our laundry done, dishes, and vacuuming done as well as got both of the boys rooms cleaned up.  And the most fun for the boys was getting the burn pile burned.  They used the fire pit which was apparently much more fun 🙂 After they got all the cleaning done they sat down with the boys for a fun game of Blockus.  I finally woke up at the same time they were getting ready to hit the road.  So glad they were here to spend the morning with them because I was back in bed for the rest of the day.  From 2-5pm and again from 6:30-8:30pm.

Friday: my sleep schedule was pretty much the same, meaning almost all day.  The boys played downstairs, watched YouTube, played Minecraft together and made the day pass.  Luckily dad brought pizza for dinner which was when I finally decided to take Imitrex…and then I was awake until 4 am working on my paper work for Mayo Clinic.

Saturday: We all just hung out and slept until about 2:00 pm.  We had gotten a couple of inches of snow but the kids didn’t want anything to do with it…they are so over winter and so am I.  Then Josiah got invited for a sleep over which he was super excited about.  Dan, Gideon and I went to Meijer for groceries for the next few weeks since I could be gone as long as 2 weeks.  Then off to Applebee’s because it is still Dan’s birthday week and that was his choice 🙂  Much easier to go shopping and to dinner with one child!  Then we hit the Dollar Tree and Goodwill.  I finally hit a wall of fatigue where I could no longer move really.  I found a seat and could barely get back up to go to the car.  On the bright side, the reason I was so fatigued was because I had walked all three stores and normally I take carts.  It felt good but so terrible at the same time.

Once we got Gideon in bed I finally finished all of my records (duplicating and organizing records from HGB, Sparrow, MHNI and Allergist) for both Mayo clinic and myself.  I wanted to have the same exact copy.  I then wrapped up the last of my timeline info, medication changes and headache journal updates and I am completely done with any and all paperwork I need for Mayo Clinic…phew!  That was a big project!

I would imagine that tomorrow, Sunday, will be a low key day.  I think we made the best of Spring Break this year.  I didn’t know if I would even be able to do anything, so everything that we got to do was a bonus.  Plus the boys were just glad to have late bed times and the freedom of electronics all week!

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Emotional Article

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Please Don’t Call Me Pretty—

I’m Just Sick And 
Skinny: BUST True Story

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This article brought tears to my eyes for two very conflicting reasons. The first is for being so jealous of a friend who was extremely skinny. I praised her for how great she looked and then she told me why she was so skinny. Many health issues. I instantly felt ashamed but there is no take back. But that is how demented really is. I was jealous of a woman who was I daily pain, constantly struggling and lives in chronic fatigue.

On the flip side of all of this, my illness has never lead me to the skinny and pretty, only to the fat and body shaming I do to myself. I don’t recognize myself anymore. In fact when I watched a recent video where I helped pull Gideon’s tooth I was utterly disgusted with how fat I looked and felt. Instead of seeing the joy on my face and the glee in his, my first thought was “was that really me and was I really that fat”.  To me I feel like blaming my chronic illness is a crutch.  But when it comes down to it my migraine triggers prevent me from exercising even swimming because of the angle my neck is at when I breath. I have been on so many drugs that all seem to have the same horrible side effect of weight gain. On days when I am in bed for days I don’t eat much and what I do eat is packaged, processed comfort foods as it will help make the pain go away. So I hate looking how I do, I try to avoid mirrors when possible and always trick the camera into making me look skinnier than I am. I try to accept myself but that is a most difficult thing to do in the society we live in.

In other words this really hit home hard tonight as I face a night of insomnia which will likely be followed by a day of sleep and fatigue.

Even as I read the comments I received on FB to this post it is still hard for me to see myself any other way than how I see myself in the mirror…unfortunately that does not stop the binge eating, it almost makes it worse.

I wonder how many others out there struggle with either side of this story: Skinny and pretty but sick or Fat and Ugly and judged but sick.  I do know I am not alone, but it makes it all the more difficult to deal with the challenges of being chronically ill with no true end in site.  Yes, I am going to Mayo Clinic, but there are no guarantees and no one can tell me how long I will have to live like this.  One of my friends who related to the story made sure that I make sure that Mayo helps me learn how to live my day to day life so that the depression, the eating, the pain doesn’t take me down the hole that can so often happen.  My solution lately is to take my abortive medication every day.  I am only supposed to take it 3 days a week, but if I did that I would live in bed most of my life.  Hoping to find something that will help me avoid taking the abortive medications everyday.  I believe I have taken either Amerge, Imitrex, Toradol or Benedryl every day since March 15th…but I have also had a migraine or a NDPH bad enough to need a medication almost every day (23 days).  Something has got to change!!!

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Preparing for Mayo Clinic

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They asked me to pull together all of my medical records which are ready to pick up…just have to go and pick them up.  They also asked for timeline and medication list..I took that one further and made a list of all of the medications I have taken since this whole things started and if they worked, if I had side effects, how long I took them, etc.  I am really hoping that this will really provide insight into my journey over the past 14 months.

Here are the documents I have pulled together all ready:

I also consolidated all of my headache journals into a spreadsheet that shoes the number of days I was non function a month and how often I have needed to take abortive medications to help with migraine pain.

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And last but not least I put together a binder for all of my medical records.  I plan on having a copy for myself and one for them.  It has dividers and an appendix and everything.  I did that last night.  So much fun!  Such a nerd, but I love it!  Organization is what made me successful in the work place environment, so maybe it will make the journey to Mayo a success!

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Adult Coloring

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I finally finished my first adult coloring page.  It was very satisfying finishing the page…but I learned something … if you intend to use patterns of colors, you should finish all of those patters in one day 🙂  Can’t wait until I have down time with no migraine (not very often lately unfortunately) to tackle the next page…it has butterflies and there will be lots of purple.

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MHNI #14

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March 31st, 2016: I remained at baseline NDPH all day which was a great relief compared to the days leading up to this visit.  I took an Amerge just to make sure that a migraine didn’t decide to join or that the NDPH didn’t increase.

I had such a great day.  My friend Dawn rode down with me and we talked all the way.  I drove and I talked and my head pain did not increase…it was wonderful.  I even drove home and talked on the phone for a good majority of the trip home since Dawn had food coma and I was trying to prevent going into food coma 😉

I was really worried about my appointments today because I had to tell them about Mayo Clinic, but it turns out they already knew because they all had to sign off on the records to go to Mayo.  They were very supportive and were anxious to hear any findings from Mayo.  What a relief!  And anxiety for no reason.  Oh well, I just didn’t want them to think I was going behind their back…I really just wanted to have someone look further into what might be causing the constant head pain.  Almost 15 months now!  Never how I imagined it would be, but have done my best to take it in stride.  So glad that my Dr’s at MHNI had my back about going to Mayo Clinic.  I leave in 5 days.

In between Dr. apts Dawn and I went shopping to 5 Below….great store, but you really have to limit yourself or you could spend way to much money without even knowing it.  And then we were going to meet up with my high school friends Kristen and Steve and their son Eli.  Unfortunately they were delayed and we only got to give hugs, say Hi and good-bye.  But the food at Olive Garden was awesome.  I hadn’t been there in so long.

Oh and I stayed awake all day!!!  Big deal for me really!  Thanks for making the trip with me Dawn…it was much needed girl time!

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Easter Wednesday

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Easter Sunday: Parent Fail due to Migraine: The kids have no idea it is Easter and that is ok because I was never able to get to the store to get any Easter basket stuff. I feel so terribly guilty, but luckily I was blessed with children who simply go with the flow and are not very aware of time. Maybe next week will be better and I can get to the store and hit the clearance sales so we can celebrate next Saturday or Sunday. I figure as long as we go over the real Easter Story that is the main point and it doesn’t matter when we do that. But the guilt will remain. And back to bed I go. This round of migraines/headaches has been really awful and I even have a new one that I have not experienced before. And to top it off it does not seem to be responding the medications that I have on hand. But I have taken all the meds in combo and am hoping for some lowered pain time to spend with my family later on today.

Wednesday, March 30th: I finally felt up to being human today.  So I went shopping and got lots of after holiday sales on Easter candy and stuff. It was a lot of fun getting their baskets together. Filling the eggs and then hiding them. It was as if the timing couldn’t have been more perfect. We even had sun and it was really nice out. The rain held out and the boys had a great time. So glad that I was able to provide “Easter” at least the secular version to them! Next up is the read the real Easter story.

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New Migraine

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March 26th I am guessing that this drastic change in barometric pressure could be why I have been down for two days. Such terrible pain and meds are not working. A 0.1 change can result in migraine. This shows a change of 0.66.  And the pain is new.  It feels like someone has their hand at the base of my skull and their fingers are like tentacles of pain radiating up and over my head to my forehead.  The majority of the pain begins in my neck on my left side, at the top of my head where it is sensitive to the touch and has stabbing pains and behind my left eye.

March 28th: Today is my 5th day in row down with the same migraine. Meds so far haven’t helped. This seems to be different than previous migraines/head pain. I am hearing from others that they are also suffering right now. I just wish the weather would stabilize. I have no other explanation than that. At some point I am going to have to go to the ER but it is so damn inconvenient. So if anyone has no plans or kids to take care of who wants to hang out at Sparrow, let me know!

March 29th: Finally decided to go in to the ER. My speech was getting increasingly more slurred and I was having trouble finding words words. 6 days straight does not do a body good when it comes to migraine.

I have to admit that the service at Sparrow ER was pretty amazing, fast and very smooth.  I got there and got my bracelet.  I immediately went to the next person to tell them why I was there, and was called directly to give a more detailed account of what was going on and at that point I met with an ER physician where they came up with a plan.  From there I went on to get my blood drawn and urine sample.  Before I could even finish filling out the sticker I was taken to a room.  Within minutes a nurse was there getting an IV started.  It was nuts!  And awesome!  They tried the migraine cocktail (Toradol, Benedryl and Zofran) which didn’t do anything.  Then they tried Haldol and pepsid.  Haldol is a drug that I need to put on my “never take this drug again” list.  I felt like I wanted to crawl out of my skin and then passed out.  Still no relief.  After a consultation with a hospitalist to determine whether to admit me or try a Nubain shot and they went with Nubain and it worked like it always works.  I am heading home with a prednisone pack (which I plan on saving for a trip where I could really use it.  In fact I have felt pretty good since that ER visit and really didn’t need the prednisone pack.

1:30am Home again home again!! I feel so much better. Hoping that I wake feeling refreshed a little bit anyway. The boys did great. He took them home and put them to bed at regular bed time. Then when I called he woke the boys long enough to get to the car and went right back to sleep. Kids are so great like that!! Thanks for the prayers.

 

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New Migraine leads to ER Visit

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I will look back at this and one day laugh…in fact all I can do is laugh about it now.  I have already written this post, but had completely forgotten about it.  I spent about a half an hour putting it together….and it was already put together.  Ugh Oh well!  Maybe some of you didn’t see the first post about the New Migraine 😛

The new migraine involves the left side of my neck where there is a great deal of muscle spasming.  On the back of my neck, it feels like a hand is being placed at the base of my skull and the fingers are tenticles of pressure that engulf my head before finding their target behind my left eye where it feels like a dagger.  It may sound dramatic, but this is the pain I felt for 6 days and on the 6th day my classic migraine behind my right eye joined the party.

March 26th: I am guessing that this drastic change in barometric pressure could be why I have been 6898_10153978454741897_7694716924008176830_n (1)down for two days. Such terrible pain and meds are not working. A 0.1 change can result in migraine. This shows a change of 0.66.

March 27th: Parent Fail due to Migraine #126: The kids have no idea it is Easter and that is ok because I was never able to get to the store to get any Easter basket stuff. I feel so terribly guilty, but luckily I was blessed with children who simply go with the flow and are not very aware of time. Maybe next week will be better and I can get to the store and hit the clearance sales so we can celebrate next Saturday or Sunday. I figure as long as we go over the real Easter Story that is the main point and it doesn’t matter when we do that. But the guilt will remain. And back to bed I go. This round of migraines/headaches has been really awful and I even have a new one that I have not experienced before. And to top it off it does not seem to be responding the medications that I have on hand. But I have taken all the meds in combo and am hoping for some lowered pain time to spend with my family later on today.

March 28th: Today is my 5th day in row down with the same migraine. Meds so far haven’t helped. This seems to be different than previous migraines/head pain. I am hearing from others that they are also suffering right now. I just wish the weather would stabilize. I have no other map_tileexplanation than that. At some point I am going to have to go to the ER but it is so damn inconvenient. So if anyone has no plans or kids to take care of who wants to hang out at Sparrow, let me know?

March 29th: I finally decided to go to the ER. My speech was getting increasingly more slurred forgetting words. 6 days straight does not do a body good when it comes to migraine.

Their new triage system is quite nice and efficient.  I never sat down from the moment I walked through the metal detector until I was in a room getting ready to be hooked up to an IV.  I got my wrist band, talked to the first person to tell briefly why I was there, then off to explain further and make sure all of my info and medications were up to date in their system.  In that same room I met with a triage Dr. where she came up with a plan which was put into the system.  I then went to get my blood drawn and give a urine sample.  I didn’t even have time to put my name on the sticker and they were whisking me to my room where a nurse came in quickly and started the IV.  My veins don’t like to cooperate, but today the woman drawing my blood got it on first try and the woman putting the IV in only took two tries.

The first round of meds is the migraine cocktail and for me that is generally; Toradol, Benedryl and Zofran.  It didn’t work of course (I had already tried that at home, but they have to try).  Then they came back with Haldol (which made me want to crawl out of my skin, it was terrible) and Pepcid.  It finally knocked me out but the migraine remained ever so present when I awoke.  They were debating on admitting me at that point, but after a consultation from the hospitalist on call they decided to try Nubain and guess what it worked.  I has yet to fail me in these terrible, long term migraine cycles.  They let me lay for quite a while and once the narcotic effects wore off the migraine was gone.

Dan had taken the kids home earlier in the evening because each one of these medicine cycles takes time to take effect.  So I called him at 1:00 am and gathered up the kids and came and picked me up.  I love that my kids are so malleable…they just go with the flow no matter the situation (well most of the time anyway.

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P.s. 

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I stayed awake long enough to have a good start on my packing list. Once I got it in my head I couldn’t go to bed without at least starting the list and formatting the table of course!  I know I have made a few geeks out there proud! Haha. 

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Caffeine + Amerge = Wide awake @ 3:00am

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When I woke I had very little head pain…but I decided to have some ice tea with Caffeine so I can stay awake and enjoy the head pain, which meant that I started doing things (I did get a lot accomplished) and talking on the phone for this and that which meant that my head pain increased.  We had Gideon’s Parent/teacher conference tonight and I really wanted to go and enjoy it…he was so excited because it was lead by the students…way too cute and we got to see what he is learning.  So I decided to take an Amerge for the migraine that was brewing.  That in combination with the caffeine means that I am wide awake still at 2:45am.

I completed my entire timeline of Dr. apts and procedures done since Jan. of last year (I had already started, but I finished tonight).  I also completed my medication timeline.  A list of when the meds were prescribed, by whom, dosage and if they were effective and if I tolerated the med.  And then because I was still going strong I made a spreadsheet of my migraine journals that show how many migraine days I have had each month since this started and how many days I have had to take medication to help with the pain.

So in a nutshell I am still wide awake, but I still have very little head pain.   I wonder what other spreadsheets I could make, I do love spreadsheets and organizing 🙂  hehe!  I believe that the first thing I begin to do when I start feeling better with or without the aid of medication is to organize…the kitchen, file folders, make spreadsheets, write my blog to get my thoughts in order, laundry, cleaning.  Praying that this continues tomorrow because I still have not unpacked from our trip to Florida a month ago 😛  Don’t judge!  Most of the clothes are summer clothes anyway!

Now I will probably sleep all day tomorrow.  That’s the way it goes. Oh wait I need to start a list of things I need to take with me when I go to Mayo Clinic…and I will definitely need my HotHands Hand Warmers and gloves.

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