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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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Spring Break 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Emotional Article

Please Don’t Call Me Pretty—

I’m Just Sick And 
Skinny: BUST True Story

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

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

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

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

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

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Preparing for Mayo Clinic

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

Here are the documents I have pulled together all ready:

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

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

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Adult Coloring

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

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