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Off to Mayo we go…

by Natasha on January 10, 2014 in mommy blog, Uncategorized

Well it’s here. I made the appointment what seemed like an eternity ago but those darn holidays, they just made the last three months of the year fly by.

I haven’t talked about my health in awhile because of two reasons…there really isn’t anything new to share & I’m trying not to think about it so much. After my last hospital stay my second rheumotologist gave me the same advice the first one did…it’s time to let the big boys handle things, make an appointment at either John Hopkins or Mayo Clinic.

So I did, and now it’s here. Now I’m here.mayo clinic jacksonville

My dad is here with me which I’m very grateful for, he & P are going to switch off coming to my appointments. This place is crazy you guys. I’m sitting in the third waiting room since I arrived an hour ago, my first impression is they do not mess around here. This is not a place where they get your appointment wrong or misplace your file. They know who you are & why you’re here before you do…a well oiled machine to say the least.

Mayo is pretty much the place to go when no one else seems to be able to help you or when you need the best. The tough cases come here, the otherwise hopeless cases come here or in my case, the ‘I don’t know what is wrong you’ come here. Hopefully, for answers.

I have had the worst anxiety the last few days about this trip. my worst fear has been, “What if they don’t find anything? What if once again I go through lots of awful tests only to show up as ‘normal’, what if this all ends with yet another doctor shrugging his shoulders & saying, maybe it’s stress?” Somehow I’ve resolved that I just need to have faith that whatever the outcome, it’s meant to be this way. Whatever they say, it’s for a bigger reason & I must believe that good will come of it. (Just because I know that & can regurgitate it to you does NOT mean I always remember that, I’m learning that faith is an ongoing decision, & sometimes, often, I still make the wrong one.)

So far today I’ve gone through patient registration. I proved I am who I say I am, I gave them all of my films & labs, which they promptly scan & enter into your ‘patient portal’ online, & I’ve met with my primary care dcotor. Your primary care doctor is kind of like your team captain. Mine is a sweet, young, very pretty blonde woman. I felt like she was caring & eager to help me find some answers. After a good review of the last two years with her she then decided what she’d like to see on my schedule. That’s not where the magic happens however, the magic comes from Ruth.

Ruth was my assigned scheduler. She takes all of the doctors’s requests (a visit to gynocology, neurology, rheumatology, physical motion, xrays, ultrasound & of course labwork) & MAKES IT HAPPEN. Girlfriend is better than match.com

While I was getting my blood drawn she was working the phones calling all of the different departments, trying to get me into to see them in the next 72 hours. It took her a little while but somehow her magical headset pulled through & I received my schedule for the rest of my visit. Except for neurology. Those buggers play hard to get & I can’t get in to to see them until February 19th. And that was because I got lucky & slipped into a canceled spot, normally I would be waiting until May!

So the schedule looks like this…

Hip Xray now, Gynocology this afternoon & Ultrasound this evening.

Doctor of physical motion (your guess is as good as mine!) tomorrow & Rheumatology the next day.

Autonomic testing on Monday with my final meeting back with my primary care doctor that afternoon.

I’m finding that I’m oddly excited about this, I’ve never experienced any sort of medical organization that comes even remotely close to this place. If I’m going to find answers anywhere it’s got to be here. It’s just got to.

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  1. AndreaR

    January 10, 2014 at 8:32 pm

    I am praying for you Natasha! I hope they can find some answers for your health problems that have been happening.

  2. Kerry

    January 10, 2014 at 8:36 pm

    Good luck! I’m hopeful that you come out of there with answers.

  3. Lo

    January 10, 2014 at 8:42 pm

    I hope you find your answers. I know the frustration of appointment after appointment for days on end. I was diagnosed with RA at 24 and medication/Drs appts have been a part of life since. I hope everything turns out well and I’ll be praying for you and your family.

    • Natasha

      January 11, 2014 at 12:49 am

      Oh sweetie, RA at such a young age, that’s awful…have they kept it from progressing? RA, Sjogrens, Lupus…those are the ones they’re looking at & I’ve learned a lot about RA in particular, it’s no walk in the park. Praying for you too!

      • Lo

        January 14, 2014 at 3:41 pm

        It’s been holding steady, not too much progression. I did get one good year of remission last year and that was great because I was so sick of taking sooooo many medications. It was ridiculous the amount of pills and shots I had to take a month. It did come back last year in full force around the fall, but I can’t complain too much. I’ve started new meds since because I’ve “killed” my previous ones (gotta love the way terminology used to describe the progression) meaning they will no longer work on me, but I have a great rheumatologist and I trust him so I’m hoping this one works. I hope you’re feeling better and you get those answers so you can start treating asap! Take care 🙂

  4. Carol

    January 10, 2014 at 8:55 pm

    Praying! Praying!! I hope they can give you definitive answers! You are strong, Natasha!

  5. Wendy

    January 10, 2014 at 9:02 pm

    Will keep you in my prayers. I am oddly excited FOR you. And intrigued… As someone who works in the (pseudo) medical field, I would love to come keep you company just to see the place in action… I’ve always heard great things about it.

    Good luck, and I hope you get some answers.

  6. Alexus

    January 10, 2014 at 9:12 pm

    Good luck! It’s awful to not have any answers. We will be praying that they give you a diagnosis that comes with an easy treatment!

  7. Oby

    January 10, 2014 at 9:59 pm

    Praying for you Natasha!

  8. Allison S.

    January 10, 2014 at 10:08 pm

    I’m weirdly excited for you, bc I work in medical research and I know how awesome mayo is. Sending lots of thoughts of strength to you, outside the box thinking to your docs, and wishes for answers. I would be panic attack city if in your shoes, so don’t even second think that anxiety. Totally normal reaction. Ruth sounds like my kind of lady.

  9. Jen Lara

    January 10, 2014 at 10:09 pm

    I think you are in the right place. Though you were probably closer to Hopkins, I think Mayo is uber-efficient and top notch. My friend, who has experienced both Hopkins and Mayo for cancer treatment, says nothing compares to Mayo and their services (and their cool scheduler people).

    I am reading about your journey for two reasons – to send you good healing vibes and also, b/c my sister has been experiencing some similar symptoms and the doctors in the Hopkins family can’t quite figure it out. Maybe your answers will help others.

    Good luck!

    Jen

    • Natasha

      January 11, 2014 at 12:45 am

      Oh wow Jen, I’ll write about it more tomorrow but my doctor said I was the second one that day she’d seen with the same symptoms & they see hundreds of young women like me with auto-immune issues. If there’s anything I can do to help your sister navigate things I’d be more than happy to!

      Also I went to Mayo because my rheumotologist said that “Hopkins might see a young, pretty, healthy looking woman who looks pretty normal on paper & be more apt to dismiss her, Mayo is more sympathetic & will look a little deeper” Yes, Hopkins was right down the road but what’s the point if you’re going to end up with another doctor that can’t or won’t help?

  10. Amanda

    January 10, 2014 at 11:57 pm

    Praying for peace for you and that you get some answers!!! I’m seeing my tenth doctor on the 27th and if it doesn’t clear anything up, I might have to do the same thing you are. I’ve had people telling me the same thing about either going to Mayo or Johns Hopkins. I’m looking forward to hearing about how it goes for you!!

  11. Becky

    January 11, 2014 at 1:06 am

    Im glad you’re at Mayo they are AMAZING!!! I hope you get some answers! T&Ps sent your way!

  12. Erin

    January 11, 2014 at 1:23 am

    I am SO hopeful that the doctors will be able to give you answers and help–lots of prayers for you! Good luck!

  13. AwesomelyOZ

    January 11, 2014 at 1:50 am

    Best of luck Natasha.. I’m sure they’ll find whatever is wrong with you. They are definitely an amazing institution so I’m sure you’re in great hands.. Sending good vibes your way and hope you get some answers soon! -Iva

  14. Dee

    January 11, 2014 at 3:20 am

    I am praying for you! I am a lurker but I really hope that you get some answers and if you do not that the answers still come another way. I read every time you post. I am a RN and believe so much in the Mayo Clinic.

  15. Janel

    January 11, 2014 at 3:23 am

    I’m a Mayo Girl! 🙂 Are you in Jacksonville? I was literally JUST there. Procedure Wednesday, overnight in the hospital and home by 2 on Thursday. Back to almost 100% today.

    You are not kidding – those people DO NOT mess around. They will not lose your file, miss you appointment or anything! LOVE IT! It does my “on time” heart good. If you think regular appointments go smoothly – you should see the way they run the procedures! Like a drive thru – but your order is ALWAYS right.

    Praying you get some answers and some relief! <3!

  16. Lauren H

    January 11, 2014 at 3:27 am

    Natasha, you are totally in the right place! My mom was having terrible, unexplainable pain years ago, no one in the area could give any answers, and (like you) she traveled all the way from Maryland to the Mayo Clinic in Florida to find out what was wrong. It turns out that it was Lyme disease!
    I’m wishing the best for you, and you are lucky to have such an amazing family surrounding you!

  17. Erika

    January 11, 2014 at 8:25 am

    Praying for you, Natasha! You are at the right place, at the right time with the right people and you have to believe that. Sending you hugs and faith! Xo

  18. Kate

    January 11, 2014 at 10:47 am

    I’m keeping you in my thoughts and sending you lots of strength.

  19. Angela

    January 11, 2014 at 4:54 pm

    Thinking of you and your family. I pray you get answers. What a journey. You are a powerhouse, Natasha. Love from Washington.

  20. Kristi

    January 11, 2014 at 8:34 pm

    I hope you find some answers, so that you can be on the road to recovery! Fingers crossed.

  21. Bren

    January 11, 2014 at 11:47 pm

    As a mom of a very sick son, we’ve spent a bazillion hours in hospitals. One (not medical) thing I can suggest is to treat this time as a break, as weird as that sounds. Do things, relaxing things, on your downtime. Eat out, room service, whatever. Squeeze in a movie, a favorite store, a walk in the park. You probably already have, but add a great movie to your ipad, bring headphones and snacks to the hospital for some N&P movie time ( or N&D…my Dad and I watched August Rush and he LOVED it). Just don’t let medical time be all you do. Best movies of the week around here have been World War Z, Now You See Me, Reign (TV show), The Bachelor (hello, it’s Juan-uary) and rewatching Shameless to refresh our memories.

    Good luck, and good answers, Bren

  22. Tricia

    January 12, 2014 at 5:00 am

    Sending relaxing vibes your way girl. A. Hoping the docs and experts there at mayo can find some answers for you. I do have a cousin that is a doctor there, if for some reason you need to have another contact. They all treat their patients like the royalty they are, my Dad also went there briefly. Big big big hugs, i think about you and your medical situation often! Sending good vibes from here in Mexico City!

  23. Kelly

    January 12, 2014 at 5:46 am

    I’m so sorry that it came to this – but hopefully this team will figure it out once and for all. These seem to have it all together and determined to find out whats wrong. Wishing the best for you & your family!

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