Just Gotta Keep Going

Mar 17, 20215 min read

If you follow me on social media I've been fairly quiet recently. My apologies. I tend to take breaks from all media. Its usually when I am struggling medically and don't have it in me to make posts.

With that said, it has been a struggle lately. My respiratory function is definitely done. Even when you know something is going to happen and as much as you prepare for it, when it hits it comes with a big punch! I've spent a lot of time lately grieving my own life. It really helps me overcome and adapt to what life is now.

I don't like posting if there really isn't anything positive to post about. I realize that there really isn't anything 100% positive about dying and what it is I'm going through. That if I am going to be completely honest and show what it is I go through I need to be willing and able to share the not so positives too.

One very frustrating thing I am going through currently is the loss of my voice. I can at times get out a few words and sentences. It comes with a ton of effort and strength. A lot of times I'll start talking and then nothing comes out. I'm the type of person who has to finish what I'm saying or get my point across. I know I have the app and I can use it but it just seems so slow when could just say it.

Let's face it sign language is a complete language and while yes its great to learn and I should have done so years ago when I started losing my hearing I'm getting frustrated at that too. This is not the time to pick up a new language when my body is failing me!!

At times I feel so isolated and a lone. Like people don't understand what it's like to go from being verbal to being almost completely non verbal. I'd give anything just to be able to talk again. My body can continue to do whatever its doing but just let me have my voice!!

It's left me in this semi dark place. Except I won't allow myself to accept it! I won't allow myself to think this is it. So everyday I deflate my cuff everyday I talk as much as I can no matter how damn frustrated I get. Everyday I say as many words I can because the voice I do have, that's better then nothing at all.

That day may come when nothing at all comes out, but it's not today. If I can only say a couple words or even if at have to say one word at a time between big breathes through the vent its something. I know my girls appreciate it too. At the end of the day though I break down because I feel like its not good enough!! I need more from myself. Its hard to go from one thing to having almost nothing and having to accept that is my new normal. It just takes time to adjust.

My body is putting me through the ringer. Those who have been following my journey know that my kidneys have been causing some issues for some time. When my lungs got worse my kidney pain actually subsided some. I think my body was so overwhelmed with trying to protect my respiratory function and keep me stable that everything else failing to a degree leveled out as my respiratory function progressed rapidly. The body is so interesting in how it protects itself!!

Now that my lungs have failed but I'm stable on a ventilator, my kidneys are back to causing a lot of issues and extreme pain. I also have a rare condition called Nutcracker Syndrome (NCS) where my left renal vein is compressed. My left side by my kidney has been hurting more and more. There is a lot of controversy in the medical world on if NCS causes pain. I and many others can tell you that YES it most certainly does!! Because I have other rare and complicated medical conditions I never found a surgeon willing to surgically help me. But it also seems there is also something going on with my kidneys. Which makes things even more complicated.

My nephrologist is amazing and has been following me through both my tracheostomy and G-tube surgery and labs and has been trying to get me in for an appointment. Unfortunately at this point in my journey I am not looking to save any other of my organs or start the process of what might be happening with any of them. This means I will not see my nephrologist for further kidney testing. If my kidneys are indeed failing, I will deny all treatment going forward.

My intestines have also failed more. I know this by what comes out in my stool. More recently capsules from the one oral med I do take is coming out. Its not even getting digested but it's also not getting absorbed. Things like potassium and vitamins are also not being absorbed. When asked about TPN. Its an easy no. I've declined and have fought to not have it thus far. The rate of sepsis is so high and with my immune system its just not a great combo. Right now currently its really not how I'd like to go out. So no to TPN.

I have been extremely bloated and started swelling in my legs randomly. Not an everyday thing for my legs. Definitely something I have noticed. My heart is supposedly strong and doing well as of a few months ago. So well, the cardiologist suggested I exercise. Trust me that's NOT happening!! I bring this up because swelling and bloating can be signs of heart failure.

I will say this, end of life is definitely interesting and will keep you on your toes! It is also excruciatingly painful! I'm not sure why though.

That being said and with all the glory my body is going through I am reconsidering palliative care. No its not hospice. I'll do another blog on what palliative care is and go into far more depth on what it is and what they do and why I am reconsidering it and why I initially denied it.

If you do follow my Instagram or care to check it out there is a post about palliative care and what it is, but not to worry I will be making a post in the next few days to next week about it with probably way more information.

I wish this were a happier post, but again dying isn't all glamorous. I want to share even the not so fun and positives with you all. What this journey looks like for me personally. What my thoughts are, what it feels like, etc. The good the bad and the ugly.

Just have to keep going and keep fighting!! Trust me fighting I will do! Even if I have no intention to preserve other failing organs I will never allow myself to just give up and give in. I'm going to enjoy this life to the end! Pain and all!!

Live your best life! Make a million memories!