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.
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.
Procedure 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.
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).