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Radioactive [Mayo 4]

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gJeQu3tPardon any grammatical errors or ramblings I’m very tired:

I started Lyrica last night and haven’t felt a difference yet but I think it has to build up in my system, at least it didn’t make things worse. However when I woke up this morning my leg muscles were sore from me overdoing it the day before by running all over creation and pushing myself to hard, because of this I had to use my cane today to get around. Typically even when things are really bad I avoid using my cane because people ALWAYS stare at the young person with the cane and it wears on you. Well because I needed to go deal with my life today I sucked it up and it was weirdly liberating to decide “I really don’t care”, I figured everyone at the Mayo would understand and I was right. It may seem weird to a lot of people who haven’t experienced this but to me it was a good experience. Also I passed another young lady with a cane and she turned around as I passed and yelled “SEE SHE DECORATED HERS TOO!” to the man with her (for the record mine is camouflage and hers was blue with bright spots). Good times.

So today I went in for my nuclear joint scan and more blood work. For my ‘Nuclear joint scan’ they gave me some radioactive solution to drink, it did not taste of mint as promised. I then waited for thirty minutes and they gave me an IV of more radioactive solution. She had warned me that it may leave an odd taste in my mouth. That odd taste happened to taste like tongue depressors, no I don’t know how or why. I started asking about this scan and she explained to me that the Mayo in Rochester was the only place one could get a scan like this and that it was developed by their doctors. Basically they load me up with radioactive radicals that are drawn to increased blood flow specific to inflammation. Through this scan they will be able to see even the smallest hint of rheumatoid arthritis or any other form of inflammation.

Tomorrow I will rest and probably do nothing. Friday I have a series of MRI’s and Monday I will see the pain specialist at St. Mary’s.

Seemed relevant.

EDIT: throat ulcers are back and worse. Still not sure why. ALSO after reviewing my doctors notes online [I love that the Mayo lets you do that] I discovered I was 16/18 on fibromyalgia trigger points! That’s a lot!


5 responses »

  1. I am glued to these updates! My Dr’s have suggested sending me to the Mayo but I have been pushing back. For some reason I’m afraid of what they will say, not to mention the battle I will have to fight with my insurance and the financial burden it would be for me to travel there… I’m just dying to know what they find with you and what they say they can do to help. I’m so afraid that if I go and they say they can’t help me I’ll just curl up and die. Does that sound strange? Sorry to emote all over your blog, but just had to let you know that I’m rooting for you and hanging on every word! Thanks for sharing your experience!

    • Don’t be sorry! I was in the waiting room thinking “oh god what if there’s nothing they can do and I’m just wasting everyones time and money?!” So far this trip has been well worth it. I already suspected fibromyalgia but this doctor said he was certain I had it and ordered all kinds of tests I hadn’t even heard of. I HIGHLY recommend the Mayo in Rochester as they have pain management resources that the other clinics don’t have [I got to it on monday and will update]. It means a lot to know that other people are in similar boats, that’s the whole reason I write this blog.

      • Oh thank you so much for validating my feelings! I’m so encouraged every time I read your blog. Like I said… glued to your updates! 🙂

  2. Jo Schneider

    Maddie, Dear One, The nuclear joint scan sounds fascinating. Available only at Mayo’s! — that’s really interesting. Super to be able to get a report on what’s going on inside you that causes you so much pain. And, more importantly, what can be done about it. That whole Mayo Clinic area sounds as though it’s a community in and of itself. It must be so comfortable, knowing you’re accepted as you are (includingcane or not), and that there’s friendliness andcompassion and interest in each other, back and forth with most or all of the people there, patients and staff. To repeat myself, I’m so glad you got yourself there!! More information-gathering Friday, I see — hope you have a really good rest day tomorrow. Love you lots, Mimi


    • Mimi it is incredible here! I ran into some other patients I had met on the shuttle on Monday and they took me to lunch with them. Everyone’s in the same boat here and is really open about what’s going on. We discussed the pro’s and con’s of joint replacement and how it has changed recently. Everyone is supportive of everyone else and wishes everyone else luck. I wish the rest of the world was this fantastic.


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