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Life Update III

Hi everyone, I’m so sorry to have been awol lately. I know I’ve been missing to you and mostly, I know I’ve MISSED YOU. You all are kinda my only friends anymore.

I just wanted to post a quick update. We completed my daughter’s out-of-state 2 week rehabilitation program and she is still dizzy. So no improvement in her condition at all.

I’m very disappointed that she still feels unwell, but I’m happy that they studied her so intensively while we were there. That’s exactly what I’ve been looking for a doctor to do this whole time and I couldn’t find one that would do it.

They were able to eliminate alot of the most common causes for her dizziness – most of which my daughter’s previous specialists had already been prescribing her medications for. They were able to rule-out inner-ear issues, dysautonomia issues (her body not regulating blood pressure correctly), vestibular migraine issues, etc.

I’m very upset that we wasted alot of time (MONTHS) with her other specialists that kept PUSHING treatments and drugs on us without thoroughly verifying that this was her problem. Like, why is it ok to prescribe blood pressure medication to a CHILD without verifying that she has a blood pressure issue first?! It’s not ok. When we told her first cardiologist that this medication wasn’t helping her dizziness, he offered to DOUBLE her dose before questioning whether this was the correct treatment. Obviously I didn’t go along with that because it didn’t make sense to me.

We had another doctor prescribe her anti-seizure medication to treat her dizziness. Obviously that medication didn’t improve anything for my daughter and even made her feel WORSE. When we reported that back to the doctor, he also offered to increase the dosage without additional evaluation. Absolutely not.

But at this rehab, they thoroughly evaluated her for everything. More so than any of her “specialists” did. And that’s exactly what I needed.

They’ve been able to pin-point several issues contributing to my daughter’s dizziness and it involves mostly her right eye and the right side of her neck. They found that she has vertical nystagmus and convergence spasms in her right eye. They found that the right side of her face is starting to droop (I did start to notice that on my own), and they found that she LEANS her face and body to the right side too. I didn’t notice that until they pointed it out to me, and yes she does. And they found that she has huge muscle knots on the right side of her neck. They said that those knots are probably contributing to compression on nerves and bloodflow to her brain-stem.

Dang. We noticed those knots on her neck before. We first saw them before covid – so maybe 3 YEARS ago. We were worried that it was the c-word (you know, bc we thought they were swollen lymph nodes) and we took her to 2 different pediatricians at 2 different practices just to be safe. Both those doctors told us not to worry about it. “Oh, it’s not the c-word. Just keep an eye on them and if they don’t get bigger then don’t worry about it.”

Well, they didn’t get bigger and my daughter didn’t have any other symptoms at the time, so we did kind of forget about them.

This rehab told us that her dizziness issue now may be due to a build-up over several years of her nerves/bloodflow being compressed to her brainstem on the right side – which matches with the issues she’s experiencing now with her right eye and the right side of her face/body leaning and drooping. And shoot – when you ask my daughter to describe her dizziness, this is how she describes it:

Doctor: “Are YOU spinning or is the room spinning?”
My daughter: “The room is spinning.”
Doctor: “Which way is the room spinning?”
My daughter: “To the right.”

I’m so ticked-off that I believed these earlier doctors that told me not to worry about it. I SHOULD HAVE BEEN WORRIED and I should’ve been pursuing answers 3 years ago! I just feel so betrayed by doctors. I feel like they all just dropped the ball. And we’ve been to a TON of doctors. All of them!

Anyhow, the rehab started physical therapy treatments to improve the eye issues and to release the muscle knots in her neck. They’re also ordering an MRI of her neck to see if there is a structural issue there that needs to be treated.

And that’s where we are now. She’s not yet feeling any better, and that’s all I want.

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Life Update II

Hi everyone I miss you all and I miss my place here to escape. I can’t wait to have the time to spend on here again. I hope it’ll be soon. Because it’s definitely good for me.

As you all know, I’ve been obsessed with my daughter’s dizziness issue and finding someone that can help her. So far, we’ve seen a ton of specialists and had a ton of tests done and everyone’s stumped bc her test results are always normal. So most of the doctors have been like “MAYBE it’s this condition, so try these drugs and we’ll see.”

And none of those drugs or treatments have helped.

We did see a new doctor last week. We had to travel several states away to see him but he’s supposed to be the best, and if he can help her feel better then it is totally worth it.

She actually failed his tests, so this is the first doctor she’s been to with a legitimate clue we can follow. He did a bunch of functional tests and he told us “normal 2 year olds can pass these tests.” My daughter did not.

For example, one test he did is where he wrote letters on her legs with her eyes closed. When he wrote letters on her left leg, she got them all correct “G” “D” “R” etc…. When he wrote letters on her right leg, she was like “I don’t know” “I don’t know” “I don’t know” etc… It was really jarring to see. I never noticed she was having all these other issues too.

But this is the first doctor that could validate that something was wrong. He was like “Of course she’s dizzy, her brain is struggling so much. I can see it.” This validation is such a big deal.

So he thinks he can help her. But he wants to do 2 weeks (at least) of in-person rehab. We’ll basically have to move there for a little while. We’ll do it, just figuring out some logistics now.

And I reached out to my workplace because they offered to pay travel expenses for employees getting medical services that aren’t available locally (due to the recent Supreme Court ruling), and they didn’t shut me down. Surprisingly. They asked me to provide some documentation on why my daughter’s medical service isn’t available locally. So I’m going-through that process now too. We’ll see how it works out. It’ll be a big help.

So that’s my latest news. I hope you all are doing much better than we are!

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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!

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Q2 2022 Subscriber Spotlight – Travel the World Club

I’m very pleased to announce that the latest Subscriber Spotlight is Barry Till from Travel the World Club. 

This is the perfect blog for all of us travel fans out there.  He has a life mission of visiting every single country in the world – almost 200!  And with 72 countries already under his belt, he’s well on his way to achieving that goal!  This blog is where you can go to check his progress and get all the details (including tons of photographs!) on the places he’s already visited.

Barry Till from “Travel the World Club”

And… as a travel fan myself, I’m extremely jealous that he’s actually made the leap to quit his job for awhile so he could travel full-time.  This is actually my dream!  So I find Travel the World Club to be an inspirational blog for me.  Maybe one day I’ll be able to take the plunge and travel full-time too!  If Barry can do it, any of us can too, right?

One thing that sets him apart from other travel blogs out there, is the amount of information he shares regarding the local transportation situation in each place. For example, while most other travel bloggers focus on WHAT to do, he additionally focuses on HOW TO GET AROUND.  This is such a big deal when you are visiting somewhere for the first time!  Don’t miss out on all his advice about the local commute – such as local trains, boats, tuk-tuks, metros, self-driving, etc.  This could make the difference between a bust or a successful trip for you!

I’m also very impressed with how interactive his blog is.  There is a color-coded map that shows you visually where he’s already been, and tabs broken-down by continent so you can drill-down specifically to the area you are most interested in.

Some of his travels that have made me the most envious because I’m dying to go there one day, would be his visits to Egypt, Jordan, Iceland, Japan, and Vietnam.

Barry and Travel the World Club does have social media accounts too, so if you enjoy those other platforms you can find him below:

Twitter: @TrvTheWorldClub 

Facebook: www.facebook.com/ttworldclub

So definitely check-out Barry and his travels on Travel the World Club.  It’s an entertaining blog even when you have no travel plans, but when you do have upcoming travel plans to prepare for, you’ll want to get some scoop here ahead-of-time. Go ahead and follow/subscribe/bookmark while you are at it too, so you’ll be able to easily refer back whenever you have a trip to plan.

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P.S. If you are unfamiliar with my Subscriber Spotlight, it is a quarterly drawing of my email subscribers where the lucky winner will get a free promotional post.  Barry is the lucky winner for this quarter.  The next drawing will occur at the beginning of July 2022 (just a few more weeks away!).  Don’t hesitate to subscribe below to be included in the next drawing!

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7 Red Flags of Toxic Coworkers

I’ve definitely had my run-in with toxic coworkers, especially during my few years in a toxic workplace. Thank goodness I’m out of there! Some of my past issues I’ve described in these posts: HR Is Not On Your Side. But some red flags to watch out for when interacting with your coworkers…

  1. They gossip, especially when the gossip is not normal chatter or part of casual conversation. Conversation can be considered gossip if the content is negative and/or unsubstantiated, and if the subject would be embarrassed by it. This definitely is a red flag because it shows that they don’t respect personal boundaries and it shows a willingness to engage and perpetuate conflict.
  2. They have close relationships with company managers and leaders outside of the office. This by itself isn’t a bad thing. But when combined with 1 or more of the other red flags described here, this could be the most dangerous. Because this is an indication that this coworker also has the time/access to influence the decision-makers in the company.
  3. They are unethical with company resources. Because if they will treat the company that employs them unethically, then they will also treat their coworkers similarly. It reveals their character. Some things that my toxic coworker would do is that he would lie on his expense reports to receive more reimbursement than he spent. For example, he would lie and say that he was treating customers out to a nice dinner, in order to get reimbursed for a very expensive dinner that was beyond his per diem. So sometimes he would take a girl on an expensive dinner date (to fake impress her), then lie on his expense report that he was with a few customers instead in order to get paid back by the company for it.
  4. Their job performance is sub-par. One thing I’ve noticed is that high-performers are usually busy with performing their jobs well, and less busy with anything else in the workplace. So those workers that spend the majority of their time with toxic behaviors are usually behind the ball when it comes to high quality work – just, their time and attention hasn’t been on it.
  5. They disguise their mean-spiritedness with jokes and pranks. “I was only joking!” is their defense for crossing lines and being hurtful or bullying. When I was in the midst of being harassed at work, my harasser left this bear in my desk drawer. I knew exactly who did it and that the intent was to disturb me. The intent was also to access the contents of my desk, which was a violation. They never faced consequences for it because they claimed it was a joke.
Unwelcome Surprises at the Office
  1. They are negative and never celebrate other’s successes. These type of individuals only feel better about themselves when they can put someone else down. And if you are the target of their put-downs, it can be relentless. Their self-confidence feeds off it.
  2. They have a clique at work that follows their lead. And they may leverage this clique against you or even tease you with being a member by including you at first, only to punish you with exclusion later. This punishment will evolve into isolation and even mobbing later.

So these are the 7 red flags I personally experienced when I was still in a toxic workplace. Did any of you experience something like this? I’m sorry if so, because I know it feels terrible. How did it differ and what was similar?

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10 Tips to Overcome Fear of Flying

Fear of Flying

Do any of you experience a fear of flying? Believe it or not, but I’m so scared of flying and I’ve had to fly ALOT! I had started chatting with another mom a few days ago at my daughter’s school and I discovered that she was also scared.

She was telling me that she has a work-trip to Europe coming up and she was so scared of it that she had made a doctors appt to get some medication.

Shoot, I know exactly how she feels and I gave her all the advice I could. I figured I should share this advice with all of my friends here too, just in case it can be helpful.

1) Do not drink alcohol. I tried this several times before when I was scared of a flight and it only made my fear worse. It made me more anxious and put my thoughts in a MORE negative space.

2) Sit as close to the wings as possible. This spot on the plane will experience less turbulence. You’ll still feel it, but it will be noticeably less than the other parts of the plane.

3) When booking, pay attention to the route. Even if it is more expensive or the timings are inconvenient, try to book the direct flights. If direct cannot work for you, then check for the shortest routes possible so you spend less time in the air.

4) Also while booking, pay attention to the model aircraft. The larger aircraft usually provide smoother rides, so check the specific aircraft before you book your flight. Planes with 3 seats on each side of the aisle (or even larger, for international) will suite you best.

5) Watch the flight attendants. If you hit a rough patch during the flight – maybe some nerve-wracking turbulence – take a look at the flight attendants. Most of the time, you will see them carrying-on like normal, which is an indication that they are not worried and you should not be either. This can be reassuring when there is a fear of flying.

6) Distract yourself. This is the tip that works best for me. If you can focus on a book or a game or some writing that will take your mind off the actual flight, that should help you. I play Candy Crush while I fly and I’m able to obsess on it well enough that my flights are much more comfortable than they’d be without the game.

7) Educate yourself. Sometimes fear of flying stems from a fear of the unknown – from not understanding the science behind it. Start learning about the mechanics of flight, and the safety procedures involved, and the statistics of how safe air travel is. Such facts might help override some of the fear.

8) Take flying lessons. Sometimes fear of flying stems from the lack of control – your life is literally in someone else’s hands. Learning how to fly will help you put yourself in the pilot’s shoes, and see/feel things from their perspective – which is a perspective of control.

9) Fly with a child or someone even more scared of flying than you are. If you are accompanied by someone that needs you to stay calm enough to be able to comfort THEM, then you should be able to rise to the occasion. I’ve noticed this when I fly with my own daughter. I do not, under any circumstance, want her to see me scared. So I literally fake it until I make it. And it works.

10) Do it. Despite your fear, just do it. Continued exposure to this fear, and well as successfully getting through it, should help reinforce to you that flying is ok. Or at least, that it is tolerable.

So those were the tips I shared with the mom I was chatting with. I hope she does well on her upcoming flight. Do you all have a fear of flying? What do you do to get through it?

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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.