More Life Updates

Hi everyone!

My apologies for my posts being so choppy! I’m a bit unorganized these days. I honestly THRIVE on consistency and that has not been my life lately. But, I figured I’d update everyone on what’s been going on…

  1. Summer trip to Guyana is on hold! Remember my previous post where I said that my dad was taking us to Kaieteur Falls in the Amazon rainforest, as one of his bucket list items. Well, it’s been postponed since it is the rainy season there until August and they won’t fly visitors to the falls in the rain. And I’m totally ok with that. So we’re going to try to schedule this for fall break or spring break when it is more likely to be clear for flying! :)
  2. I know I complain about my corporate job here ALOT. When I post about it at all, it’s usually a complaint or my fantasy about leaving it. Well… I do have a positive to share. The health insurance has been great! My daughter has probably had 80+ doctor visits since last June, plus a surgery, plus a bunch of tests, and plus an ER visit. And my company-provided health insurance has taken care of practically all of it. I can’t believe how good it’s been. Especially since I know that the majority of people don’t have such a positive experience when it comes to health insurance. So I am extremely appreciative and I am very thankful.

    I probably won’t be fantasizing anymore about leaving my job anytime soon. I need to embrace it right now. And hang on to it for as long as I can.
  3. My daughter is still dizzy. She’s been dizzy without relief or a break from it since March. All her local specialists have practically given up at this point. They don’t have anything else for us to try. So I’ve been reaching out to specialists nationally to help us. The best lead I have, is that my daughter probably has a condition known as dysautonomia. So I’ve been reaching out to those specialists specifically. My first hurdle is that most of them deal with adults only – no children. So now it’s even more impossible to find someone to help.

The Mayo Clinic has pediatric specialists for this, and I’ve been trying to get her an appointment there, but they won’t book us. They say that they are completely booked for the next 12 weeks, and they don’t book anything out beyond that, and they don’t have a waitlist. They basically told me to call back everyday in case there is a cancellation.

University of Texas has pediatric specialists for this, and their soonest availability is SEPTEMBER. Of course I booked September, but seriously! It is NOT ok for my daughter to just stay dizzy until September. Not acceptable. Like, why is the system setup to do this to people who are suffering?!

I also found professional medical research online about this condition. And holy cow, this is the best thing I’ve found. It is very detailed with case studies, possible treatments and their effectiveness, possible root causes, etc. Everything that I can do that doesn’t require a prescription (and there are several prescriptions unfortunately), I’m going to try at home. I’m going to be her doctor. Lol, I’m doctor Pepper. (An old joke now I know, but still worth the placement).

There was one medical research paper I found with the case study of an 11 year old girl and the similarities to my daughter are pretty darn close. I reached out to that doctor’s University and we have a phone appointment with that doctor on FRIDAY!!! He’s out of state, so he wanted to talk to us over the phone first before we make a trip there. I’m so nervous about this phone call. I don’t want to be disappointed even more than I’ve already been.

So, that’s all my news everyone! I guess if there’s a morale to this story, it’s to be persistent. I probably experienced 500 dead leads before I got to this single good one. At least, I hope it’s a good one. It’s really the only hope I have right now.

7 Replies to “More Life Updates”

  1. It’s crazy that you have had to go through all this just to get an appointment with a doctor that can help. I hope the doctor you’ve got a phone appointment with is helpful. Sending loads of healing wishes for your daughter. ❤️

    1. Hi Tater! Oh yes, Vanderbilt has an entire department of specialists for this specifically. But they won’t see kids. So, if my daughter is still dizzy for the next 7 years, then they can help. :(

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