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Roller Coaster Weeks of May

Week of May 9th: I was still on prednisone until Wednesday.  But I was exhausted every day.  Gideon ended up staying home with a fever Tuesday through Thursday and we pretty much laid around during that time.  My head pain may have been low, but my body was completely out of energy.  So we sat, watching TV, playing on our electronics, napping a lot, even Gideon.  Head pain actually remained low until Saturday, but finally on Wednesday, I got some energy back and so did Gideon, but was still running a low grade fever so I kept him home one more day.  We had a fun day of going to lunch, Walmart, lots of garage sales and then to Miss Tammy’s (his daycare before I lost my job).  Man was I whipped when I got home though.  Friday started my day with a sore throat and pain into the chest.  I was thinking it was a yeast infection from the prednisone especially because I had it down there and on a place on my stomach…so not fun.  I just felt crappy all day.  I tried to go into town, but only lasted an hour and then back to bed for me.  I woke Saturday with a migraine starting but didn’t let that get me down…at least with the help of Imitrex it didn’t get me down.  So we packed in the car and went to a few garage sales and had lunch out.  By Sunday I was completely exhausted and slept almost all day.  Migraine most of the day when I woke in spurts.  I did rally in the evening to get the kitchen cleaned, the boys to clean their bedrooms and bathrooms and organized the laundry to fold and hang…it was really beginning to pile up.

Week of May 16th: Monday in bed all day with a horrible migraine for which I finally had to take a Toradol shot just to take the edge off.  Tuesday I woke with the migraine, but took Amerge ( a Noratriptan that takes quite a while to take effect but works for a long time) and went back to bed until 1:30pm.  I got up showered and felt like I had some energy back again.  I was supposed to meet a friend for a late lunch/ice cream but that fell through, so I13265911_10154115930606897_534315005628657821_n went and ate at Taco Bell for a late lunch by myself.  I ran a few errands and hit Goodwill for a few amazing finds…Body Glove surf suit for Gideon $8 and it fits perfect, white leather Keds for $4 for me which is what I was looking for and a pair of garden shoes for $4 and I love them, they are bright green and make me happy 🙂 And then went crazy and folded all the laundry, hung up hanging clothes put it all away..and if that wasn’t enough I emptied out my entire closet to make room for all of  my clothes that not only fit but were some amazing garage sale finds and to make room for my new addiction: LulaRoe.

The rest of this week is a mystery to me really.  I woke up on Wednesday with a great deal of energy and very little head pain (1/2).  So I called my friend Mindy and we went to lunch and hung out all afternoon and chatted all day.  Then in the evening the family went to Josiah’s school for a walk-a-thon type thing and I walked 1 1/2 miles.  I was so scared…I knew I would end up with a migraine that night or the next morning, but the mystery is…I didn’t.

So Thursday I woke up feeling ready for the day and spent the entire afternoon with my friend Carrie, hitting garage sales and Meijer towards the end of the day.  Friday I went to Josiah’s field day at school for 3 hours which was so much fun and I am so glad I was able to go and participate in something this year with the schools.

Then went to ready care because a pain in my neck, possibly lymph nodes had been bothering me, he put me on antibiotics and sent me on my way. I slept until 3:30, visited with my parents and then we all headed in to Gideon’s school for his school Carnival. And again I was so pleased and excited that I got to participate in something with the kids for their school.

Little to no head pain all day and into the evening.  I did do a Toradol shot, but that is because my body was aching 🙂  Then my parents took the kids and Dan and I just hung out all weekend, hitting a few garage sales.  Saturday night we hung out with our friends Stephanie and Jared until 1:30 in the morning.  Still no head pain.  I was even wearing my regular glasses without the tint.

Same for Sunday…I did have a bad reaction to food, but other than that another great day.  It’s a mystery!  I was actually having feelings of guilt because I had gone so long without a migraine.  How weird is that?  I was also very confused…was this going to last, was the medicine working, I just didn’t know.

Week of May 23rd: Monday was another great day.  I spent most of the day relaxing at home though just in case.  But it was nice and quiet and had no responsibilities that day and that felt good..no where to go!  Then as I was on FB a notification came up from one of the virtual garage sale sites and I just happened to click on it.  It was a piece of property.  10 acres of land, with great hunting potential.  I contacted the owner and asked if we could take a look at the property.  So after we had all eaten, we headed out 14.5 miles from our house was this beautiful piece of land.  Oh my goodness, we were instantly in love.  Rolling hills, woods, the view, the potential to maybe build some day, photography potential.  So we walked all the way to the back of the property which was quite long.  When we got to the wooded area it was tough to walk because of all the prickers, so Josiah and I chose a different path and we ended up in the swamp.  It took all of my energy to get to the back of the property and then I was digging for extra energy to get back.  We saw 4 deer and a rabbit in our short time there.  The sun was setting and we were in love.  We didn’t really think about how we would pay for the land, just how beautiful it was and the potential it had.

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And then I had no more guilt, I knew the answer to the questions I was asking myself…the13241196_10154132262611897_3871821648081814738_n head pain returned and with a vengeance.  Ugh.  I went to bed with the pain rising and woke with the head pain at a 5.  I took an Imitrex and went back to bed because I had a hair apt later that day and of course I had to make it 🙂  By the time I 13233015_468205046703984_2698938692415491479_ngot home the meds were worn off and I was back to bed and in bed all day Wed and Thursday.  Friday, I woke with the migraine still, but took Amerge because I was done with the pain.  Luckily by 1:30 when I woke up the meds had done their job.  So I went in to town to see the back about financing the property (after chatting with Jennifer our realtor, she told us that there was a possibility of financing and I made some calls and found out that was indeed true).  I got all the information about getting pre approved for the loan and what it would take to get the loan.  20% down…ugh.  If we got the property for $32,000 with realtor fees we would need $7000 to put down.  No idea really how that could happen.  So I put that aside and started driving until I found a garage sale sign which lead me over towards the property.  I decided to go look at it again.  When I got out of the car, I felt this amazing peace.  So I decided to pray about this property and if it was to be in our future or not and to please make it clear 😉  One can always ask!  And wouldn’t you know it, when I left the property, 2 houses down there was a garage sale.  If you know me, or have at the very least read this thread, I love to garage sale.  It must be a sign, right?  🙂  hehe j/k  I won’t disregard it, but I won’t put an offer in based upon that “sign” 🙂  I picked up the kids from school (a treat since they have to ride the bus and walk home) and then picked up pizza.  My parents met us at the house and took the kids off for the weekend.  After they left, Dan and I sat out front and just enjoyed the peace and quiet and listened to the birds and talked about our day without interruption.  And then the guy next door started mowing…inside I go.  Allergies are kicking my butt this year.  So now to spend Memorial Day weekend however it takes us.  But I will gather all the necessary documents needed for the pre approval for sure.

 

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MHNI Visit #13

2/2/2016 Yesterday I had my follow up with my Dr’s at MHNI yesterday.

I woke with a full blown migraine. I took my morning meds and an IMITREX, put my IceKap on and slept for an hour. When I woke up I felt so much better, thank goodness, because I had no idea how I would make it through the day.  Gideon took all of his meds like a champion this morning (thank goodness). He had to go with us to the Dr. appointments because he couldn’t go to school, I couldn’t drive and we didn’t want to expose anyone else to his multiple illnesses.  So he got to hang out in the car with us for the day. He is all set with electronics, movies and his new little stuffed animal. Then as we went to all get in the car, we had locked our one and only set of keys in the car. Luckily Dan is a pretty handy guy and we still had a metal hanger. Car unlocked, and only 15 minutes late. Then I downed some ice tea (caffeine) to further help knock out the migraine.

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My neurologist changed the triptan I was on (Imitrex) to a triptan called Amerge for an abortive med for the classic migraine, hoping it will have less side effects.   We also discussed adding Flexeril to my preventative meds for NDPH. He had read an article that people with NDPH have had great success with Flexeril, so I will be starting that tomorrow.  We will see how it goes. It is a low dose so hopefully I won’t have to many side effects.  The last change to my meds is to increase my migraine preventative medication, Robaxon to its maximum dosage to see if I had any better luck at a higher dose.  At my next office visit if my migraines haven’t gotten any better, we will try a new preventative med.  I didn’t want to add a new medication before our vacation. If the increase in this med doesn’t work, we try another at another at my next appointment. The goal is to find a med that will break the cycle of the migraines and NDPH and prevent further head pain. I also now have the option to make an apt for nerve blocks in my temples as needed every 6 weeks which thus far has been a miracle block.  I get an entire week of pain free.

2/3/2016 Today Gideon and I had a whirlwind day.  Josiah had a delay in school, so we drove him to school, so Gideon and I went to CVS to return our late Red box movies..ugh, we have to stop doing that!  And then I realized I forgot my prescriptions…ugh again!  We did manage to get to the post office to resend for the 3rd time documents to SSDI…ugh why do they keep losing my paperwork.  We drove back home to get the prescriptions…ugh.  Went back to CVS and then headed to Eaton Rapids for lunch with Dawn at McDonalds…Gideon was so excited!  Then a follow up with his Dr.  He is still full of illness 😦  Double ear infection still, swollen glands, sinuses completely blocked up.  So she prescribed prednisone to help all of the swelling (Is it bad that I want to keep the prednisone for myself 😛 and no I gave the steroid to Gideon.  He is feeling better, but just the energy level!  The rest of his little body still hurts.

Once we got home I passed out with a migraine on my left side (very unusual for me, most of my migraines are on the right side).  Still have a mild migraine but a good day overall.

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My Real Birthday was not as much fun!

I am going to pretend that my birthday was on Sunday when I was headache free for the most part and feeling great. I just had a wonderful day. Not so much today so I have officially decided that my birthday was June 28. But thank you for all the birthday wishes today I’ll except them and pretend that they are belated ha ha. And back to bed I go.

And the day just gets better! But at least I got Taco Bell for my birthday lunch. As you will see we are in the hospital for Gideon. He broke both bones in his left arm climbing a fence. They are bringing in a Sparrow Orthopedic to set his arm.

And now I am getting checked in for some meds for my head pain. Even with my Toradol I am in pain. The adrenaline that got me here has worn off completely as well as the drugs.

They were able to set Gideon’s arm and will be in a full arm cast for 4 weeks at least and a short arm cast for a few more. Poor kid 😦

All ready to go home but we have to get pizza first of course.

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Big Day

6/15/2015 Monday’s are great!  I went to McDonalds (and not in the play room) to relax alone while waiting for a script to be filled. After a crazy and emotional week last week it feels wonderful to be alone and peaceful.

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Since I was feeling well all morning I went off to Walmart to do some shopping.  I was doing well but then fatigue hit, so I had to sit in the shoe dept and rest.  Fatigue is a pain in the butt.  Just when I think I am getting ahead, then I am knocked back down.

Then Gideon and I had dentist appointments tonight.  Gideon was really excited about first dental visit and he did awesome.  I was feeling nothing but anxiety about the sounds and pain I would likely feel so I did a Toradol shot in the dentists office.  By the end I was exhausted and ready to go home and to bed.

Tuesday: The following day I spent the day in bed resting and recovering from the Big Day on Monday.  I slept for 14 hours and when I did wake I had bad blurred vision and double vision.

Wednesday: Another bad head pain day.  In bed again all day.  I finally tried Imitrex and the side effects were awful.  Within about 10 minutes of taking the medication my head started to constrict…which sucks when your head already hurts.  Even though there were terrible side effects, at least it reduced the head pain.  But not likely to take it again.

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Time Outside and Time with my Boy

Playing Ice cream Play doh with Gideon!  I hadn’t realized how much I missed him until I got to cuddle him up and see all that he had been doing while I had been in the hospital.

Grandma found the perfect 2 wheeler at a garage sale and Dan was determined to get Gideon riding, knowing that he was smart enough and had the coordination to do it.  This all took place while I was in the hospital 😦  Dan sent me a video right away of some of his first rides.  I guess Gideon gives all the credit to Josiah because Josiah just told him to get on the bike and ride.  But the best part was getting out of the house!!  It felt so great just to be outside.  But I had no energy and couldn’t really walk anywhere

 

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Hospital Admittance #3: Chelsea Hospital MHNI

On our way to Chelsea to the inpatient Michigan head-pain neurological institute. My insurance has approved the stay and I will be there for 7-10 days. Trusting that God’s got this!

The 2nd of many trips my mom and I would be making to Chelsea Community Hospital

March 31st on our way

My set up: Check out the crock pot at my side to heat my rice bags.  They actually let me keep it the entire time 🙂

Gideon and his Olaf that he made this morning with Grandma. He was so proud and a little sad when it had fallen over and started to melt this afternoon.

March 31st

All settled and dinner ordered just waiting to see the nurse to find out what the plan is.  A few questions I got on FB during the first day at Chelsea.

Heather Loose Johnson And after 4 attempts they finally got an IV started.
Amy Rogers looks like we had the same problem
Carrie McHugh David Please keep me posted. I hope you get some answers
Heather Loose Johnson I definitely will. I so wish insurance wasn’t so stupid and that you could be here too
Carrie McHugh David Me too! I just don’t want to go through the same testing that I have already gone through, so I am curious to see what test they are doing to you.
Heather Loose Johnson The only thing they had me do was the EEG and EKG because I just had the MRI, MRA and MRV. I just met with the Drs and they did not mention any tests just various drugs they are going to try. To knock this sucker down. I woke today with one of the headaches very diminished but the longer I am awake the more it comes back. But I will take 20 minutes of relief to start the day . It just sucks that it has to come back a feeling you know better than most. Do you know why yours started or did they never figure that out for you?
Cindyheath Robert Alling Are all the teats coming back normal?
Heather Loose Johnson Yes my tests are normal hehe and so are all of my test results.