Oraeley

Be Your Own Advocate

So here’s the thing.
When you’re having a lot of symptoms, and put together they sound a lot like a well known debilitating illness all you need is a test and a doctor to refer the test. Go take the test and the illness is confirm. OK. Then choices on treatment. Do your research. Make choices. Grieve.

However! What if the test shows that you’re OK?! Well hurray!!! Yes?!
That’s me. Actually, the reason I bought his $200 little laptop was to Chronicle how I am feeling and the process I’m going through to get better.

Sometimes the scariest part about looking for answers, the reason that people don’t do it, is because the number of questions there are out there in ratio to answers, the questions outweigh exponentially.

I don’t have Multiple Sclerosis or any sort of Tumor on my spine or in my brain. I just have to learn to be comfortable with my numb face and tendency to slur and forget words, as if I’ve misplaced them somewhere.

And what of the weakness in my hands, both right and left? No explanation. Seriously. I’m somehow faking it. I wonder why I’d do that. I thought my full goal has been to fit in and do everything that everyone else is able to do. Today I guess I’m just wondering that I’m to do next. It’s awesome that I don’t have a problem that’s going to hold me back, but how do I gather myself together and move on. Where do I put these symptoms? I don’t want to keep them, or to donate them, I just want them gone.

If you slept in my bed, in my body next to the man I sleep next to between the blankets that I do and swallowed the same pills that I do, with the same water and brewed and woke up with the same coffee that I do would you live my life exactly the way that I do? No. Because you’re you. You do you, because you’ve done no one but you. You’ve manipulated people the way that you do, you’ve had the catch in your throat that you do, the string in your step, that strand of hair that falls in your face and one way that you always reach for things that is like no one else.

Even if you were forced to wear what I wear, use the soap that I do, everything it wouldn’t be quite me. Nor could I ever be quite you, even though I am in fact you.

Hello! Well, the results of that test are in, and I just can’t believe it. I am fairly sure that once upon a time I’d have to wait in suspense a couple weeks to hear back, and now I can just check my health portal online to view photos of my scans and read explanations from the doctors.

The conclusion doesn’t satisfy me at all, in fact it brought me to immediate tears of disappointment. While my husband professed to not understand and told me I should be thankful, I fully think he gets it. I’m a girl who wants to know what’s up. I’m tired of being tough. I’m too weak for almost anything, too tired to try.

My spine looks perfect on the MRI. My brain, if showing any damage at all, looks like a person who perhaps suffers from chronic headaches, which I do not. Which I absolutely don’t. Sometimes I get a headache, but that’s just if it’s too sunny out or if I’ve eaten a donut.

Hi. So, I’ve been sick,

Like, my body’s been breaking. I go through times where I’m ok with that, and others that I just want to cry. Tomorrow is special though, because I’m getting an MRI of my brain and spine which will hopefully give some answers as to what exactly is making me feel so broken.

Yesterday I turned 35. It’s 2020, so I guess this is as good a time as any for a good dive into caring for my health and learning how to do a better job of managing my wellness.

A bit of what’s been happening:

On December 22nd 2019 I fell down in my upstairs hallway, tripping over absolutely nothing. I felt myself fall but not myself land on the floor, just a breeze pass over my face then the passing of time and my husband by my side lifting me to my bed. I felt very tired and sweaty and slept for hours, I think if he weren’t home I wont have gotten off the floor at all.

It was so strange that I insisted on seeing my neurologist. She scheduled an EEG and requested a blood draw to see how my anti epilepsy medications are working. My medication levels were too high, according to the blood draw, and the results of the EEG (electroencephalogram) were that I have continuous abnormal brain activity throughout the 45 minute, which absolutely shouldn’t happen since my medications have remained at the same levels for years without a problem.
Since this my face has gone numb. It began with an eye twitch then spread as a sensation of tingles through my right eyebrow and cheekbone then lip then through my chin, now complete numbness.
I’ve lost the ability to maintain firm grip without support, the prime example being my dogs retractable leash. I can’t grasp it any longer, it just falls away. What I do instead is have a leash that ties around my waist, which is awesome, because the dogs movement actually helps stabilize my now unreliable stride. It’s all quite interesting.

My neurologist urged me to think of any other odd things that have happened to me, and I do remember oddeties that I couldn’t make sense of at the time, and I am trying to pull together ideas of what could be happening. However, it’s tests like the EEG and MRI that really do the detective work and can provide me the diagnosis that I need to hit this.

Earlier I mentioned my medication levels.
After it was seen that my medication levels were at an irrational place, I was decreased on my prescription for that particular med and given two others, so I am still working through those side effects and figuring out what’s actually helpful and what I could do without.

So, according to the order for my brain MRI tomorrow, the doctor is looking for: MS/Tumor/Metastases/Meningioma/Infection/Abscess/Seizures
For my spine it says, “MS SCREENING/COMPRESSION FX”
Hmm.

Well. I know something’s wrong. I can no longer multi task at all. And if more than two people are talking to me at once I cannot form words to respond at all. I sound like I’m trying to speak around a mouth full of cotton. What’s happening to me?

Hello. How this home? WordPress, your dashboard is home no matter how old I am. How is that? My goodness. No matter the computer I’m typing on, how I’m sitting or if I’m standing. Everything floods over me. The ambitions, the dreams, the feelings that I’ve let in and released over the days, months weeks and now flowing over a decade.

So, as for the title. Six Weeks, Baby. No, no pregnancy. But rather, six weeks without Darren. As I type those words, I wonder if I’ll ever be writing them with the meaning that he’s never coming home. Heavens, I hope not. But if that happens, somehow my hands will be steady enough to type that it’s OK, because God’s that way, isn’t he. Always holding me up, always whispering words of promise, and providing safety no matter what it is or where I am.

Darren’s been away in North Dakota and having a fabulous time. He’s there with our sweet Koen who is already nine years old.
This is the longest I’ve gone without him. I’m home here in NOoksack, Washington with my AJ and Carly. Deeder, my lovely first born who I wrote so frequently about in the early days of Oraeley is in California with my parents, and next week will be 13 years old.

It’s six weeks without Koen and Darren, and eleven days without Diederick. But what’s more, is that there are only 11 summers before all my children are over the age of 18. How are we here? I guess it’s what I’ve said all along, living day by day counting the blessings and treasuring the moments. No second chances, no way of turning back the pages…unless they’re written down, in which case they can be reread. What I’m seeing, regretably or otherwise is that sometimes writing them down isn’t a physical act. As anyone can plainly see, it’s been so very long since I sat down, behind this dashboard. Those I wrote for once are so changed, so gone, and even dead. The memories though, they’re alive by being experienced and enjoyed, sharing through smiles together, sharing in quietness too, even alone. Taking in the pains and pleasures that God gives can take so many forms.

I want to come home, every day to this WOrdpress dashboard, but I don’t. I don’t know why. But do I ever love feeling these words fall off my fingertips as they are now. The smooth swish sensation as my fingertips find the keys and my left thumb lands the spacebar. Will wordpress still be waiting here for me when my hands are wrought with arthritis I hope so. :) Not hoping the arthritis, hoping for the perpetual existence of my dear blogging platform.

This isn’t the first time Darren’s gone off by himself, actually he isn’t alone, is he? By bringing Koen, I guess he’s brought me too, in a sense anyway. He says he always has to take someone with on his adventures back home because there was a time that no one thought he’d ever get married!