Winter Hurts

Winter seems to roll in packing a huge punch!! Well its not quite winter, but my body doesn't seem to agree with cooler weather.

It sucks because I lOVE fall! Its my favorite season when all the leaves start to change, it gets windy, and the morning air has that crisp feel to it. For whatever reason my body just can't seem to enjoy it.

The cold air slows my blood flow so my legs start to throb. My feet turn a pretty shade of purple and my toes turn blue. I can't even begin to explain the pain. All this because the arteries and veins are abnormally tiny.

The muscle weakness seems to be worse, which means my joints are unstable. Luckily though the colder weather also means my joints tend to become stiff so dislocations and subluxations don't happen as much but do still happen.

Since my muscles seem to not want to work I have noticed that also means I have worsening shortness of breath, my stomach pain is worse and everything takes 3x as long to empty, I have more blockages as my intestines don't want to work or get more fatigued. This means I have to take more meds just to have a bowel movement.

I had a pulmonary appointment today Nov. 18, 2021. Let me start by saying I really like my pulmonologist. He saved my life. I also understand there's only so much doctors can do & understand about someone's condition & how to treat them. He dismissed the idea that my worsening shortness of breath could be weather related instead blamed it all on my hypokalemia.

Yes hypokalemia is a very real issue and I don't and never have denied it being one! But is that whats happening here? No, I'm very in tune with my body and until the weather changed I was fine. So unless my potassium is weather related too and decided to take a dump when it got cold too I don't think that is whats happening here.

Cold weather is known to cause worsening shortness of breath in those with muscle weakness and chronic respiratory failure. So its not unusual that, that's what would be happening here.

Had my Pulmonologist not removed the tracheostomy, I would have gone against medical advice and pulled it myself. Because he wanted to see my potassium levels above a 3. I did something probably incredibly dangerous in order to do that. If it meant getting the trach out I was willing to do it for the short period. Which also meant getting the trach removed by a medical professional which let's face it was more ideal then me taking it out myself. The tracheostomy sits right above a major Artery in your neck! So yeah I weighed my options and did what was best for me.

I wanted the tracheostomy removed because I wanted to live whatever time I had on my terms. Not connected to anything. I wanted to breathe for myself! I wanted to scream and shout and talk and decided the trach just wasn't what I wanted. If my lungs ever got down to what they were again, I'll NEVER get a trach again!!

Since the trach removal. I've stepped back from all things medical! I stopped seeing specialists unless necessary or things majorly change. I just wanna live my life!! I don't wanna know how much time I have. That info is irrelevant to me. I know that the more medical professionals I saw, the more tests I had, the more I spent in hospitals and facilities the worse I felt, the more sick I was!! Since I pulled back, the less appointments I have the more I took control, the better I've felt.

I DO NOT advise anyone to do what I did. I'm just doing what was best for me. I wasn't getting anywhere doing what I was and it wasn't benefiting me. I was getting worse. I was at end of life. I was dying. I'd rather go out on my own terms doing my own thing, on my own time. When it's my time, its my time. I know for a fact I don't want to be connected to a ventilator at any time now.... The vent did buy me more time, allowing my lungs to rest while we also figured out what was going on and a possible cause. Was the true cause really hypokalemia? Or did I simply just agree it was for the sake of getting the damn thing out!? Will we ever really know the cause to my lungs being 9%?

I'm at a point now where I'm ok letting go of all things medical. It's frustrating having so many rare medical conditions, but I understand that doctors do get to a point where they don't know how else to treat you. It just comes down to helping maintain a level of baseline normalcy.

I'm just living my best life. I'm a live!! That's all I know. Right now that's all that's important, all that matters. Even if at times I can't breathe, even if I live in chronic pain, I'm a live and that means more then anything else!! There are so many worse things in life, but least I'm here to experience the good and bad of it all. I'm thankful for it all.

Hug your loved ones, tell them you love them. Check in on people often. Live in the moment, because the most important time is NOW. Not next week or next month, but now. Stop putting stuff off that you wanna do! Just do it! Plan it, set small goals so you can get it done. Don't make yourself less of a priority then those around you!! You are just as important, self care and self love is just as important then the love you give your children, your spouse, partner, pets, etc.

Now go do your thing... LIVE, LOVE, BREATHE, DANCE, BE SILLY!!

Keep Fighting to Breathe Another Day 💜🫁🎉