0

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.

13244057_10154130463246897_9192157925923215676_o13227292_10154130463256897_6246298232012644346_o

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.

 

Advertisements
0

Day 5 of ongoing head pain

The fun thing about having several different types of migraine is that when one isn’t rearing it’s head the other ones can join the game.  It has been a very long week and I used all of my abortive medications by Wednesday.  If I wake with a migraine tomorrow I will be taking something so that I can spend some time with my family.

The worst part about having a migraine that lasts so long is the sleep patterns get so messed up, I stay in my bedroom about 22 hours a day and I become really down and lonely.  I forced myself to come out of my bedroom tonight as much to be with my family but also so that I wouldn’t fall asleep at 6:00 like I have been doing lately.  But because I have a migraine I have put in ear plugs in order to deal with sounds.  The result taking that late nap is that I can’t get to sleep and when I have a migraine in the middle of the night and can’t sleep, this makes for a bad combo (as many migraine sufferers know all too well.  But I am always so tired.  So here I am posting on my blog.  I am also going to post my pictures from Florida tonight too.  This gives me a goal so that I am not as tempted to go in to bed and fall asleep 🙂

0

Weather and migraines don’t mix

This whole weather changing thing has got to stop. At least the drastic changes. I woke with a migraine so disabling that I could barely handle the pain. Dan took the kids to the bus stop and I went back to sleep only to wake up to excruciating pain. So I brought out my Arsenal of abortive meds and took them all. I took the one that has been working for migraine first but 30 minutes later nothing changed. Then I took benedryl to hopefully go back to sleep and waited and put my IceKap on but nothing was helping. I finally brought out the big guns: 2 doses of Toradol and I was relaxed enough to fall asleep in about 15 minutes and slept until now. The excruciating pain is definitely gone, PTL, I just feel groggy with moderate level pain which I am so grateful for. Hey at least I finished and filed my taxes last night; maybe that was the cause of the migraine 😜. And thankfully I had planned today as a day of rest. So I will continue to rest and pray that when the meds where off the migraine does not return.

Of course this migraine lasted 72 hours followed by a day of disabling fatigue and dull head pain.  The 2nd day I just tried to sleep as much as I could to deal with the pain, using medicine alternatives like the icekap and heated ricebags.  However by the 3rd day I couldn’t take it anymore, so I took abortive meds again. Fortunately the meds take the severe pain away but unfortunately they leave me very dysfunctional and sleeping most of the day, then I couldn’t sleep at night, so I slept most of the day today (migraine hangover day).  The past 3 weeks have looked exactly like this and I am just getting frustrated.  Yes, there are meds out there that take the pain away, but they don’t make me functional.  So I am starting to consider a 2nd opinion.

2

How can I forget so easily?

Even though I have found that prednisone works like a miracle drug for me and takes away my migraines and headaches for the number of days, the aftermath is not so much fun.  It is as if the week of freedom makes me completely forget about what it’s like to have migraines, what the symptoms are leading up to the migraine, what happens to me during the migraine and especially the day following the migraine.  This week came as if it was a complete surprise to me.  Every time I have gone on prednisone I have had a really bad week following, so should have known, but it was nowhere in my memory as I drudged through the week.IMG_7959

Luckily I had enough medication to get me through Monday, which was spent all day in the Pediatric ER at Sparrow.  8 hours of sitting, waiting, trying to make Gideon comfortable, dealing with fever, puking, pain.  It was a good reminder of what my friends and family have done for me over the past year.  And I was very thankful that my migraine had not returned yet.  But it was the last day of the prednisone…so now I just had to wait for the head pain and migraine to come again.
12742637_1745763652304281_8267423894534451792_nI didn’t have to wait long.  Tuesday morning I awoke with the beginnings of a migraine and the regular head pain had returned.  By the end of the day the migraine had kicked in full gear, so I took a triptan, which helped me get through the day…but I was woken up at various points in the night with the pain and then remained in bed all of Wed and Thurs. The pain was almost unbearable at times.  This happens when both the migraine and the new daily persistent headache are both competing for top spot on my pain scale.  I got a lot of use out of my IceKap and I even brought out the eye patch I bough in case it might help with the severe light sensitivity I get during the bad migraines.  I spent a good deal of time sleeping, but I also watched a good deal of NCIS on my right side with my right eye close and one ear plug in my left ear.  This minimized sound, brightness and business and allows me to block out the pain for periods of time.  This migraine also brought on a great deal of jaw pain and so I pulled out my bite guard…it was as if I had to pull everything out of my aresanol to deal with this big whopping migraine.

I had already decided I would take meds on Friday morning to help with the pain if it remained and it did.  So I took my migraine cocktail (Toradol, Zofran and Benedryl) and a triptan for good measure and went back to sleep for 4 more hours.  The rest of the day I thought I was feeling drugged and then remembered the postdrome symptoms and I was smack dab in the middle of them.  How could one week of relief make me forget how all of this works.

When I woke up Saturday (today) I felt great and I took Gideon to swim, went to CVS and to QD to get our after swim donuts (and milk and orange juice).  When I got home I asked if everyone wanted to go into town later because I was feeling great, but I just needed a nap).  Again how could I forget what 4 days of solitude, tucked away in my dark and quiet room does to me…It makes me fatigue easily and makes dealing with chaotic situations not so well.  But I had forgotten all of that and we headed into town.  After doing a return at Kohl’s and doing some shopping, I was whipped and couldn’t figure out why.  By the time we left the store I was so irritable because the boys were being boys (not even being bad, just noisy and busy: chaotic).  We had planned on going out to eat and just going inside the restaurant kicked up my anxiety a notch that when I came back to the car I had to put ear plugs in and ended up having to keep them in the entire evening.  By the time we were done eating, there was no way I was going to be able to go grocery shopping too.  How could I forget all of this during a one week of reprieve??  It is beyond me!  But thankfully I am on the flip side of that migraine and I will take it easy tomorrow in the hopes that it will keep another migraine from coming on so quickly as it tends to do these days.

0

Vacation with Migraine

DSC_6408

I took a nice long break from my blog while I was on vacation in Florida.  Mostly because the beginning of the vacation was dealing with head pain and migraines and fatigue that I never got on my computer and the second half of the vacation was spent keeping my little man, Gideon, comfortable because he became sick on Tuesday (the day I finally got medicine that would allow me to have more energy and less head pain, prednisone).  All in all we did make lots and lots of fun memories and have so many pictures of course that I am sure we will look back on this vacation with many happy memories.

Then we got home late Sunday night got the car unloaded, unwound and went to bed.  Monday I spent the entire day in the ER with Gideon…luckily his fever broke and he is doing much better, but he has been home with me all week.  Now it is looking like both boys will be home tomorrow and maybe Friday for a snow day.  Guess I am going to have to wait until next week to truly unwind.

The one thing I have to say about vacation with migraine is not as I expected.  I think I was expecting to go on vacation and everything would be great…a vacation from migraine because I said so…but it was not so.  So “My Family’s New Normal” keeps taking shape.  Everything was so much better when I fought to get a script for prednisone though…I was finally able to have the vacation from migraine and life 🙂  It was also very well timed so that I could take care of Gideon as well.

In the days to come I will write a few posts about my vacation and post a few pics!  But I am looking forward to having things wind down here at home.  Unfortunately with a winter storm comes more head pain.  Migraine started as soon as I awoke this morning.  Might be a long rest of the week and weekend!

That’s all for now folks!

0

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.

12662513_10153855018306897_4699274972519157286_n

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 😉

1901622_10152203573591897_130022581_n

0

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.

12650824_10153837616791897_3119533913244410899_n
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.