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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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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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Test Results

I keep forgetting to post the results from testing done at Mayo Clinic. They all came back normal. So still no answers but in the long run it’s good that I don’t have cancer in the brain or spine or any of the incurable autoimmune diseases. But it’s been pretty rough week with the weather patterns the way they’ve been. So I still keep trudging along taking each migraine as they come. Finally over a 72 hr migraine…abortive meds were not helpful throughout this one.  No changes yet with new meds because it will take 8 weeks to get to the target dose and then another 5-6 weeks to know whether or not it’s working. If it works AWESOME, if not I go back to Mayo in August.  I will start the prednisone break on June 10th so that I am able to be there for my 2 boys over at least two of the summer months.  We already have a week long trip to Florida in June and hopefully we will be able to do some camping during the break.  I am also aware of the possible risks of prednisone and one of them is Headache, so hopefully that doesn’t happen to me.  And increased acid reflux, so hopefully the meds I am on for reflux will continue to keep it under control.  The side effects long term will have to be dealt with in the long term.

So for now I deal with the side effects of Neurontin: fatigue (both mental and physical).  But hopefully as soon as I make it to the target dose and stay on it for a little while my body will adust.  More importantly I hope it works!

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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).
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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.