Thankful

I'm thankful for life! I'm thankful for each breath I take. I'm thankful I woke up today! I'm thankful for every second I'm still here and every memory I can make.

I'm thankful I never quit fighting for answers. I never backed down, and pushed for what I knew I needed. Looking back, last year could have been my last holiday! I wouldn't have been here to enjoy all I did up till now had I not made the choices I did.

So why am I not fighting to continue seeing my pulmonologist now? Why not push and advocate to have him hear me? Unfortunately no matter what I do or say he'll always believe the cause is hypokalemia, and will want to bring in more specialists whom I've already seen. What I say holds little importance to him and its more stress and energy on me.

Earlier as I typed to a friend, struggling to freaking breathe... sure its hypokalemia.... 🤦🏻‍♀️🤷🏻‍♀️ not the fact I just vacuumed & heated up lunch & through stuff in the laundry & helped Aimee clean her bathroom. Oh and the inhaler?.... no it isn't doing shit. Its literally my lungs are fatigued & I now get the joy of sitting here until they rest & "wake" up. Until then I get to feel like I'm literally suffocating. (It took over an hour for my lungs to recover and my breathing to return to normal again). Yes, before anyone asks we ruled out asthma!! All tests were negative. I do have a moderate airway obstruction though.

I'm huge on self advocacy and speaking up for yourself and what you need and not relying on medical professionals to figure it out. BUT verbal communication is extremely difficult for me and during high stress or times when people twist my words or don't quite understand me or give me a chance to find my words correctly it makes me incredibly overwhelmed and breaks me down mentally. I can't process things to the best of my ability which makes advocating for myself really hard.

I do this thing where if I get to a certain point of reaching a breaking point I stop talking, and shut down. I become mute, there's no reaching me, there is no communicating with me. I pretty much crawl into my safe mental space I created as a child and everything disappears (selective mutism). I tune everything around me out. The best way to avoid all of this, is to prevent it from happening to begin with. There's some situations where I just know I can't win. I won't be heard no matter how well I know my facts. I have to just let it go, and I'm ok with that. I fought almost 2 years for my G-tube, but I also did so majority through writing which is my preferred method of communication.

Here's the thing, I'm NOT giving up! My fight is not over! I'll die if I just throw in the towel and do nothing. That's not even an option I'm willing to do! BUT what I am doing is reevaluating everything from the every beginning. We missed something! Something was overlooked, there's a missing piece to all this. There has to be.

I've had health issues majority of my life. I can recall memories back to my teens of random things I remember happening when it comes to certain things with different diagnoses I have now. What doesn't make sense is I was relatively fine 4 years ago. Then everything rapidly declined and here we are now. Like a bomb just exploded in my body and every body system decided to malfunction.

I have Ehlers-Danlos Syndrome and Mitochondrial Disease plus many comorbidities that effect different organs, muscles, nerves etc. But it shouldn't cause such a rapid decline as it did that I almost died within 4 years. So what did we miss? What were the VERY first symptoms I was having that lead me to make an appointment in the first place so many years ago? Luckily I made a log and kept notes of everything I was going through. So glad I did, because now I can go back and compare to what symptoms I have now and see where I stand.

I'm also going to focus on things I've put off, like my kidneys. I was supposed to see a nephrologist but because I had just gotten my tracheostomy done it just wasn't good timing. I was scheduled for several tests, but wasn't comfortable with traveling yet. Due to my kidney pain getting much worse, and Nutcracker Syndrome I'm thinking its time.

Hopefully I can figure out what we missed, what was overlooked. What's worse now that no one has questioned. That's what I am busy doing now. Going through all my notes, everything I may have written about what I was going through hoping to find the missing piece.

I don't blame anyone. It's no one's fault for missing it because we found so many other things in this process. BUT during this journey of 4 years I can't help but ask myself did I get worse at the expense of medical professionals? Did I get worse because we missed something? Did I get worse because of medication reactions? Did I get worse during the prolonged waits of trying to figure out what was wrong all this time?

What I do know is since withdrawaling myself from medical care and taking a step back from the poking and proding and tests and countless appointments every week, I do feel better. I mean don't get me wrong I do still feel like crap and my body is in pain daily but its like this weight is lifted and I'm free to live my life now. I'm more stable now then I was back in March of 2021.

I'm thankful for my own ability to learn and research ample amounts of data about the conditions that I have and things that could possibly be wrong so I can present them to the proper medical professionals who are willing to go the extra mile in helping take on complex cases and find answers. I appreciate doctors who are willing to research and say they don't know the answer or are willing to find out more info. Doctors don't know everything! They are human, not super human, who practice medicine.

I'm stepping back and figuring out why or what those very first symptoms were that lead me to seek out doctors 4 years ago and what may have been missed then. Something tells me its connected and there's a piece missing.

I'm thankful, so VERY VERY thankful for everyone medical and non medical who has supported and helped get me and my family to today. I appreciate you all more then words can ever express and say. I'm a live, I'm stable, I'm breathing.... Thank you 💜

Keep Fighting to Breathe Another Day 💜 #beccasfight #RespiratoryFailure #respiratorymuscleweakness #ehlersdanlossyndrome #staypositive #keepfightingtobreatheanotherday #keepgoing #youcandoit #ibelieveinyou #thankfulforyou #medicalunicorn