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I’m Back and I’m feeling great…temporarily that is!

This post is just to get me back to my blog.  It has been entirely too long and there is so much to catch up on.  I tend to do things gung ho for a period of time and then burn out and that is exactly what happened with my blog.  I am really hoping to get back to it, especially during this time of reprieve.

Just a quick migraine recap…I went to Mayo and they put me on Neurontin stepping me up to 2400mg/day.  I successfully made that step up and had my first 8 day window with no migraine and then it came back full force.  I was also prescribed prednisone for 2 months starting at 80mg/day for a week and stepping down 10mg per week.  I started the prednisone on June 8th and have been on it for 22 days.  And let me tell you I FEEL FANTASTIC!!!  I feel like I could do anything, go anywhere, be anyone, etc.  I even went Jet skiing for the first time which by the way brought on a major migraine regardless of all the meds I am on…so I still have to be careful.

But the one thing I am so very much enjoying is reconnecting with my husband and 2 kids.  They have missed me and I have missed them and it wasn’t until I started the prednisone that it truly sunk in that I have been completely absent from their lives for the past year and a half.  Yes, I made veiled attempts to be with them in the same room, but there was always this anxiety that a sound they would make would trigger a migraine, so I could never be fully present with them.  And now I am able to snuggle, spend time with and not be the snarky mom I have been for the past year.  Yes I still get frustrated with my 5 and 10 year old of course, but I don’t feel like I am going to strangle their necks because they dropped a marble on the floor.

I just feel happy!  I don’t think you can truly understand happiness and joy unless you have had it taken away and for that I can be thankful for the trials and tribulations I have been through over the course of the past year and a half.

I don’t look forward to the end of the prednisone trial (2 months), but at the same time I really don’t think about it much because I am truly able to live in the moment and feel happiness and relief.

I have lots to catch you up on: end of year school activities I got to partake in, vacation, dealing with migraine and kids on summer break fears and so much more.  So keep an eye out for more to come!  Sorry for the hiatus but it is good to be back!!!

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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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Mother’s Day Weekend

It was such a blessing to spend so much time with my family but it was a very surreal weekend this Mother’s Day Weekend. It was as if I got to step out of my sluggish body and head pain ridden ornery self and got to be this happy, fun LulaRoe legging wearing, master garage saling woman this weekend. It was magical.

Friday night: I love that Gideon is still young enough for back rubs and snuggles. The best way to spend quality mother/son time for me…the hugs are healing and he loves his back rubbed…it just happens that he falls asleep very quickly when I do rub his back, so I just held him.  He will not be small enough much longer to do this.

Saturday we all hung out for the morning and then went in to town to garage sale and man did we hit a ton of sales (see Garage Sale Addiction Post for more on that).  Gideon ended up with 2 of the best things; a 4 piece suit which he loved and had to put on right away when we got home and a game with many interesting additions to the box.   As soon as he put on his suit he had me taking video of him doing dance moves…very funny!  And then my mom asked if I got any pictures of him in his new suit…good thinking mom.  No I hadn’t, but I was still up for a few pictures and he was so excited to have his pictures taken that I definitely took the opportunity to do so!

Sunday morning @ 7:30 I was woken up very quietly to ask help buttoning up Gideon’s pants, then shirt, then vest of his 4 piece suit.  After he was all dressed he climbed into bed and played on his ipad, making me a new season 😉

I came out to the living room around 10:00 and Gideon was right there asking to play one of his new games from a garage sale.  As far as the game goes, all the pieces were there but 1, so that is pretty good for a used kids game…but it was all the extra stuff that was in the box that was so strange:IMG_8589[1]

  • a little gun
  • instructions for a roku
  • a used pencil top erasure
  • AA battery
  • AAA battery
  • paper clip
  • 2 fake fingernails
  • paddle and ball
  • wrapper for a cough drop
  • 2 rubber bands
  • string
  • a piece of wood
  • metal tool of some sort

After playing the game for a little while I asked Gideon if he wanted me to cut his hair because he had been asking for a short hair cut, so I got the clippers out, got him into play clothes, and cut his hair. He was definitely due!  And I was so glad I felt good enough to cut it!

He said he was going to wear to wear his suit today and he did, but he had to have a bow tie, so after his hair cut I took him to my photo props and found him a bow tie.  Then I sent him to the shower and he got his suit and bow tie back on.  It was Mother’s Day after all.  He made me want to dress up a bit too 😉  Then we had to take pictures with his new hair cut and with the bow tie…it was so wonderful to feel well enough to be able to do so.  Josiah didn’t want a hair cut or his picture taken!   Growing up!

Josiah shows me his love is ways that can’t often be photographed and he is getting old enough that he isn’t always up for pictures for fun. He prays for me every night, he gives hugs and is always concerned about me. I have been blessed with two very living children. What more could a mother ask for 😘💕

It was a wonderful weekend.  We went garage saling, shopping and out to dinner.  But even better I got to be a mom, a photographer, a hair cutter, a mom, a photographer, a garage saler and a mom and it was delightful!

And then we were all tuckered out from a fun long weekend of Migraine free mom!

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Happy Mother’s Day to me and to my mom!

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Garage Sale Addict/LulaRoe Addict

Apparently when I feel well I tend to shop: both online and at garage sales.  I have always loved garage sales and auctions ever since I was little.  And it has been such a bummer that I haven’t been able to go much last summer.  Online shopping for LulaRoe is a new addiction but it is also difficult to do when I have migraine.  So much to scroll through, so much to look at that it is overwhelming.  But this weekend I was taking prednisone for a 5 day booster pack to give myself a break from constant pain.  That didn’t quite work out the way I was hoping, but with the help of my abortive Imitrex I was able to both shop online and go to garage sales all day Saturday and back to one on Sunday.

The first group of sales, flea markets and goodwill stops that I made, I scored big time with 18 dress shirts, 1 maxi dress, 5 summer dresses, 4 knee length skirts, 1 scarf, 1 sweatshirt, 2 Capri pants, a pair of jeans, and 2 pajama shirts…bring on summer.  35 items for $60.  Now I just need to feel well to wear them.

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Then on Saturday we hit a huge Subdivision Sale and went to probably 25 sales, but one of them was a super hit for me: I got 6 camisoles, 12 dress shirts all Lane Bryant $13 total. Happy Mothers Day to me! I Guess I better start looking for more pants 😀 But I definitely need to empty my closet to make room.

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And then just in case, since they had so many clothes still left, I asked if we could go to the sale on Sunday…it was Mother’s day after all 🙂  And sure enough they were just packing up, but they let me look through everything again.  This time I ended up with: 2 capri pants, 2 dress pants, 1 pair of jeans, 12 sweater tanks of all colors and sizes, 6 more really cute tops and 6 sweaters/cardigans for a total of $23.

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Now I need to clean out my closet to make room for all of these fun new clothes.  I could have put together so many wardrobes together this weekend for adult men/women and kids. What an awesome subdivision sale!!

AND THEN CAME LULAROE: I was gifted a pair back in April and I wore them all of the time.  Well last week I was invited to an online party for Lularoe and I thought I would check it out.  My friend Mindy and cousin Teresa also joined me…we had so much fun chatting and showing either other what we got.  My first 3 leggings LOVE them:

And then there was another sale during the week last week and I bought two more pair of leggings:

Should I have stopped, yep!  But I was feeling so well over the weekend and there was a huge 30 vendor online sale that I bought 2 more leggings and a maxi skirt:

AND NOW I HAVE TO STOP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Although I can’t wait to get them in the mail 🙂

So the next time I feel well again, I will have to go through my entire closet and clean it out.  Soooo many clothes that don’t fit anymore since Migraine hit and so many old clothes with holes.  It’s time for a fresh start.  Luckily my mom loves organizing as much as I do…just need to find a time when I am not down with migraine and my dresser won’t look like this anymore:

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Prednisone–>I always over due it!

Thursday May 6th: First day of prednisone 20mg!  I should have taken my friend Jennifer’s advice today when I felt so good. On the one hand it was a wonderful day. Started my day being able to fold some laundry and get some phone calls made. I went to a garage sale, had a good Dr apt, back to garage sale to get some amazing clothes that almost all fit. That’s always a big win. Then I texted Dawn to see what she was up too and we both ended up with beautiful pedicures. I had a thumb drive to drop off to Meaghan  (hopefully you got it) and realized I was 2 miles from where she lived to drop it off. One more thing crossed off of my list. I had heard back from my friend Carrie that she was nearby too so I stopped and chatted with her and her mom Ruthanne for an hour or so. On my way home I stopped at our old day care family and all the little babies just called me in. And I was off to pick up the boys just in time to get them off the bus, but talked on the phone to my mom  for the entire drive. Did I tell you that talking is a major migraine trigger. Dan had a water loss and it was beautiful outside so the boys got the burn pile done and then got out water balloons and the launcher. We had a fun time just hanging out. And if that wasn’t enough for the night we met up with Dan in Potterville for dinner at Charlie’s Bar and Grill.  Then home to put the boys to bed and crash. My head had started to hurt already but I was able to fall asleep.

Friday May 7th: Now here is when I should have listened to Jennifer, I should not have done so much on the first day of prednisone…it’s a trick, all the energy was from the pill. So I would pay for all the fun and activity and talking.  I woke with the most excrutiating pain I have felt in a long time. The pain was coming from all directions in my head. I felt like I was under attack. I tried my IceKap but it made this one worse. Finally after taking my meds including prednisone and putting warm heat on my head, I fell asleep. When I woke the pain was down but not very functional. So today I rest! And Mindy I am so sorry I can’t come for a visit today. Hopefully next week.

My neighbor also stopped by to drop off an ottoman that I bought at her garage sale and forgot to take. We got talking about migraines (imagine that) but she suffers too 😓. So I had to show her my icekap but that meant showing our house and talking for a half an hour, plus the house is a disaster but she understood. Sad to hear of another friend whose migraines are getting more frequent and more difficult to treat. Selfishly glad to have a neighbor to talk to about migraine stuff but it sucks for both of us at the same time.

13133092_10154089587201897_5739522844633282669_n (1)I did realize something today. Well not really today, but something new about one of my migraines; the one that hit this morning. Laying down isn’t the answer for this one. As soon as I stood up the pain lessened. So I made myself a Mac and cheese cup and am sitting on the porch enjoying this beautiful day. Migraines are so complex especially when you have varying types but I am so glad I decided to stand up and go outside. But now the birds beautiful songs are starting to get to me. 😕. It was still lovely getting outside but still relaxing.

 

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Mayo Clinic: The rest of the stay

Saturday:  The highlight of our trip. We met up with a college friend Chris Gottschalk and Niko. They picked us up and took us to a great restaurant called Whistle Binkies. It was so much fun and so nice out that we got to sit outside. 80 degrees and breezy…perfect! And I got my favorite dish…pan seared ahi tuna. YUM! Then on the way back, Niko gave us a mini tour of downtown Rochester.  We arrived back at the hotel just in time to our comfy clothes on to watch the new Hallmark movie 😀

Sunday: My mom and I laid low for most of the day, but we did go to Olive Garden….YUM!  I was pretty nervous about the upcoming Lumbar Puncture the following morning.  I have had bad experiences with the puncture itself and have also had spinal headaches that resulted from both punctures that I have had. 13062527_10154047653281897_1477015710969330656_n

Monday: Migraine is pretty bad so hopefully it will yield the best results.  The pressure was actually high and when they removed the fluid my head pain decreased. I am prone to the leaking spinal fluid and resulting spinal headache. It is just a wait and see now.

13055418_10154047658096897_8464084912672851094_nProcedure is completed. Fluid pressure was really up and when they removed the fluid my migraine did get better. Now we wait for results from testing and I go back to the hotel and rest.  And rest I did for the rest of the day, icing my back between sleeping.  12994542_10154051269991897_644240225602523312_n

Tuesday: I rested all day yesterday and most of the day today. I did make the journey to the hot tub this afternoon (Love love love my new Turbie twist. I have a hard time getting my hair up in a towel because bending over and standing up quickly both throws me off balance and increases head pain. Thanks to Mindy Richmond I have always wanted one because I saw it at her house. And now I have one and love it!!). I either have a migraine on the top of my head or there is still that off chance of a spinal headache but not nearly as severe as the 2 before so that is good news. My mom Sherry Dunne Weaver has been taking walks along the nice river walk. This hotel has turned out to be such a great choice. Hopefully I will have test results back tomorrow and know something more.

Wednesday: I woke with no spinal headache or migraine! Now we are off to have lunch with another college friend Mary Francis.  While we were waiting at the Gonda Building at Mayo Clinic for Mary, my mom and I finally had a chance to look around and see some awesome art work.

And then we were off to eat at a Dutch restaurant called Pannekoeken.  I love eating at new places that are not chain restaurants.  We all ordered Pannekoeken and the waitress came out singing Pannekoeken.  So much fun!

I still hadn’t heard anything towards the end of the day on Wednesday from the doctor,  so I sent a message and they said I could go home and wait for the results of the tests from there.  The initial test results came back all normal which is good but the autoimmunity and paraneoplastic results hadn’t come in yet.

Thursday: Our trip home was very uneventful.  I slept most of the way…stomach hurting and getting more and more congested.  So I only drove for 2 hours…luckily my mom was up for driving.  First person who came to greet me was Gideon with a big smile and a huge hug and he asked me if my migraines were all gone.  Buddy I so wish they were but I told him that the doctors are working hard to  make them go away.  When I walked into the house, I instantly smelled really weird in the house and it made my head pain increase…I finally figured it out and it was epoxy from Dan’s RC planes 😉  But I was really just feeling blah and my head was in a fog.  So I went to bed pretty early.  I took the first 300mg pill of Neurontin that Dr. Cutrer prescribed.  When I finally tried to go to sleep I couldn’t breath through my nose at all, and I was a little worried that I was having a reaction to the new med, so instead of getting to sleep in my own comfy bed, I ended up having to sleep in the recliner so I could breath.  Benedryl cleared up my sinuses finally but I didn’t wake up until 6:30am.  So thankful that my mom was still here and was able to take the kids to the bus.  I never heard anything this morning, so mom if you read this, thank you so much for everything.

Friday: I slept most of the day and felt really blah and foggy again.  I did send another note to Mayo and found out that the Dr. just received the autoimmunity and paraneoplastic results today but did not have time to review them properly yet.  Hopefully I will hear from them early next week.  It is good to be home.

I will be returning to Mayo for sure in August after I do the 2 month step down of Prednisone and have been on Neurontin some time.  I decided to wait on the prednisone (with doctor approval) until June so that I will be able to hang out with the kids instead of being stuck in my bedroom all day everyday.  So I won’t start prednisone until June 15th (which will also give me a break from migraine for our trip to Florida at the end of June).

 

 

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Mayo Clinic Day #1

Update from my first visit with my Mayo Clinic doctor: Dr. Michael Cutrer.
First of all he read through my summary before he met with me and had ideas of a plan before he met with me and all of my spreadsheets made things go so smoothly today. So my effort was not wasted.
The Plan: On Monday bright and early I go in for my third and hopefully final 😉 (wishful thinking) Lumbar puncture (spinal tap). BUT this time they plan on doing so much more with the fluid than before. They plan on running several assays to determine if I have any immune deficiencies or any other illnesses that might come in up on the testing. If everything from that testing and the pressure testing from the lumbar puncture itself comes back normal we will just have to wait 48 hrs and then we can come home on the other part of the plan…if something turns up I will go back in to see the doctor to discuss whatever they find further.
The medication part of the plan: someone finally listened to me that Prednisone works. That my headaches/migraines have an inflammatory response that seems to be helped by prednisone. So he is going to start me at a very high dose and step down every week over the course of 8 weeks. If anything to finally get some relief a little more long term than 1 week. And at the same time he is going to be titrating me up on Neurontin, a medication I was given at the same time that I was given Keppra (a drug I knew to cause anxiety), and we were never able to determine if it would really help. In fact I was only on a dose of 100 mg/day…and this doctor wants to titrate up to 2400 mg/day over the course of the 8 weeks that I am on Prednisone, so that when I stop the prednisone I am at the highest dose of Neurontin which will hopefully take over the pain prevention. These are hopes, not guarantees. But at least their is hope.
So now my mom Sherry Dunne Weaver and I get to enjoy the weekend and hopefully meet up with friends. So what are you guys up to this weekend: Chris Gottschalk and Karen Connell. I am pretty sure that we are going to head up to Minneapolis one day to see Jeremiah Carpenter and Kelly Carpenter if it works out for them. And Mary Francis we will have to try and meet for lunch if you can get away one day. I believe I won’t be at the clinic long on Monday and will want to rest…but maybe we can take the shuttle to where you work on Tues or Wednesday for lunch. So many folks in this area 🙂
Now that my anxieties are calmed, I know the plan and it makes sense…I feel a load of relief lifted off of me. Thank you for all of you who are praying (and that list is so long to tag everyone and I wouldn’t want to miss any, so just know that know that you are praying).