Pepper Valentine

I can’t make my daughter feel better.

I can’t make her understand how to subtract integers.

I can’t get caught up at work because I missed 2 weeks taking my daughter to an out-of-state rehab clinic.

I can’t get either of the 2 children’s hospitals in my town to schedule an mri for her. They won’t even return my calls.

I can’t get my husband to help me or her with anything!

I can’t get my own personal prescription for high blood pressure refilled bc the pharmacy says I need a doctor’s authorization and my doctor says that they already submitted it. So, stalemate!

I feel like I’m on the verge of losing it.

My schedule today was literally back-to-back taking care of everyone else but myself since the moment my alarm went off at 5am.

I got up. Made my daughter’s breakfast and packed her lunch for school. Did her physical therapy exercises with her. Drove her to school. Started work-work meetings. Some were stacked on top of each other so I had to juggle them simultaneously – such a stress! Didn’t eat breakfast or lunch since I had so much to do. Survived off of coffee and cola and candy.

My husband was home today, basically lounging around. Today is one of his “travel days” that he likes to scam his workplace out of. He claims that he is traveling and can’t work but really he is at home taking a day off. He does this at least every other week. And he pretty much made himself comfortable on the couch and watched tv the whole time.

My daughter got home from school on the bus around 4. I did more physical therapy exercises with her and I helped her finish the rest of her homework for the day. I asked my husband to help her study for her integers test tomorrow and I went back to work-work for another couple hours.

Around 7 I took a break from work-work and found the entire family – daughter, adult stepson, and husband around the tv WAITING for me to make them dinner.

I made them dinner, ticked off about it the whole entire time. Because nobody here ever makes ME dinner. And also, they weren’t doing anything else.

After dinner I did more physical therapy exercises with my daughter. She can’t do them herself and she needs to do them at least 3x a day. I asked if she finished studying her integers and she said no bc her dad didn’t help her with them.

He’s back on the couch watching tv now. I start helping her with her integers and she’s NOT getting it. I’m getting more and more ticked off because nobody is helping me.

I’m not angry with her. I’m angry that my husband doesn’t help me at all. But I know that she feels like I’m angry with her and that makes me even more upset.

Now it’s 9pm and she’s still not understanding. My husband is watching YouTube videos on the couch. I’m about to have a meltdown bc nobody is helping me. I basically sent her to bed and told her we’ll study more in the morning.

Now I’m upstairs typing this up bc I need a sanity check. I also have about 2-3 more hours of work-work to catch up on.

I can’t keep this up.

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.

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!

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!