Life Updates

Hi everyone. I haven’t posted in forever, but still want to jump in and say howdy and let you all know that I’m still around. And I miss you. You all are kinda my only friends now. Is that weird?

For some self-care, my daughter and I went to stay with my parents for about a week. It’s so healthy to stay with them. They are awesome. They take care of everything and are so supportive and positive. No negativity allowed.

My daughter is still dizzy. Been 24/7 non-stop since March 28th. The specialists she’s seen are all stumped. They no longer think that she has dysautonomia since all those treatments have had zero effect on her. And they’ve been able to rule-out just about everything else with tests.

I have literally run out of doctors to take her to in our city – as well as nearby cities within driving distance. I’ve called them all. Either they can’t help with that condition, they won’t see children, or once they find out the situation then they aren’t taking new patients – which is seriously their way of saying that they don’t want to deal with you. It’s not hard to tell.

So now I’m expanding my search area. I did find some dizziness specialists (they do neuro rehabilitation therapy for brain injury survivors) and they are willing to see my daughter to find out if they can help her. They’re 1,000 miles away, but I’ll get her there.

Interesting timing too (and not as off-topic as it might first appear) – but I’m sure we’ve all heard about the Roe vs Wade decision by the Supreme Court, and I won’t get into politics bc that’s not the reason we’re here. But due to that decision, my company was prompted to email everyone to let them know that they will pay travel expenses for their employees and families who need “covered medical services” that are unavailable in their area. They phrased it that way intentionally to not offend, but still make the offer known.

I’ve reached out now about them taking care of our travel expenses for my daughter, since per their vague wording, her scenario fits exactly. I’m curious how they will respond. What do you all think they’ll say?

IF these new specialists can help her, she’ll need to physically be there for many days and many occurrences for the neuro rehabilitation therapy treatments, so this will be a small fortune for us personally because we’ll have to book airfare and hotels for all of her appointments. But if my company will pay for all those expenses instead, it will be an extreme help that we weren’t expecting.

I don’t want to get my hopes up…

Anyhow, that’s my news. I’m sorry to be so down and out. I hope you all are doing much better than I am!

12 Replies to “Life Updates”

  1. I am hopeful, but not optimistic that your company will pay for your travel expenses. I tend to think companies care more about the bottom line than employees and their families. But I do hope you can get answers for your daughter. There is so much we don’t know about the human brain, especially the changes that occur during puberty.

  2. So glad that you both got to spend some time with your parents! Thanks for keeping us in the loop as it were. All the best to you both!

  3. It would be nice if they cover the expenses, but I have a feeling they’ll find some excuse not to, since I’m pretty sure that’s not what they had in mind. Maybe you should take them to court over that…

  4. I was wondering how you all were doing and hoping to hear from you soon. Glad you got a week of R&R and a line of hope for results for your daughter. I will keep praying! Has her foot healed up completely?

  5. Fingers crossed that your company covers the expenses. 🤞🤞
    Sending loads of healing blessings for your daughter. ❤️
    I can imagine how stressful the last few months must have been. You’re doing an amazing job as a mum. Stay strong. ❤️

  6. I’m glad you got to stay with your parents and it’s such a good atmosphere there. I’m sorry about your daughter’s continuing dizziness though. That’s strange for it to be so continual like it is. I’m guessing they’ve checked all potential inner ear issues? And is her B12 level okay?

    I’m glad there’s specialist willing to see your daughter, but it’s awful the only option is for you to travel 1,000 miles just to get there. I’ll keep my fingers crossed your company agrees to cover the costs for the travel. I’m pretty sceptical on stuff like insurance and policies so I’d not hold my breath on them covering much if at all, including hotels, but I will certainly hope for the best for you!

    Hang in there lovely, and keep us posted. You’re doing all you can for your daughter, but don’t forget to look after yourself too.

    Caz xxxx

  7. I’m sorry to hear you’re still going through health issues with your daughter. It’s the worst when it seems like no one can, or is willing to, help.

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