Breathers guilt

This blog is written my husband Scott. It’s his point of view of all we are going through with my health issues. I cannot imagine my life without him and his insanely positive attitude that helps get me through all of it! 

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Click Whirrrrrr thump boosssshh, click whirrrrrrrr…. This is the new white noise that I sleep, and wake up to. Am I annoyed by it? Not at all, it’s kinda calming. Do I wish it wasn’t here? Of course I do. As I lay in bed tonight, Drea is staying another night in the hospital. So the white noise of her oxygen machine in our room is silent again. I feel like I should switch it on to fool myself that she’s home.  
The night the oxygen concentrator was delivered was a heavy day, making me realize shit was about to get real. Drea was still trying to process the doctors orders of 24 hour oxygen as Apria was installing my new slumber playlist. The gentleman showed me how to run everything so I could show Drea as soon as she was able to come to grips with her new rubber mustache. 

Our lives have definitely shifted a lot since the O2 had been introduced. The hospital visits, the doctors appointments (here and Seattle, and San Diego), the low sodium diets, the bad days vs. the good days. I’d be lying if I said it’s been easy. It does get tough, but as you have read in her blogs, She’s a god damn tough one, and that helps me out tremendously. A great example of her character, and who she really is, I would come home from work almost daily and she would be sitting in the living completely wiped out cause she saved up her energy and spent it on having dinner ready for us when I got home. Having a 13 year old that is wise beyond his years with a heart of gold is also a key part in our fight. If Drea would ask him to wait on her, hand and foot, all day, he would not hesitate. Evan really is a great kid.

I am deeply saddened for everything that Drea has been going through. And I do feel bad when I’m out doing strenuous activities where lung power is needed. But I realized that I have to do these activities because I can, because I know she would be right there next to me running the dogs in the morning, going on hikes like we used to, and bike rides, if she could. I do get upset when I see someone smoking, or just seeing someone that has left themselves go. Don’t waste what you got!

So if you keep telling yourself that you are going to start exercising, go! Take the stairs, break a sweat at least once a day, take your dogs out daily, cause I know Drea would.  

I’ve had people ask me what they could do for Drea.  I’ve thought about it and it comes down to this; get inspired to go for a hike/walk/run. If she can’t get her asshole lungs better, then at least she can be part of someone else’s lungs. I know she has inspired me to not take for granted what I have. 

I will write again sometime soon, it’s late, I got a lot of work tomorrow. Love you Drea, I love all you that have followed, who have reached out, who have donated ( https://www.gofundme.com/4gzbpkhc seriously this has been a tremendous help ) and who have helped with everything! Thank you all. Good night for now… 

Click Whirrrrrr thump boosssshh, click whirrrrrrrr…. 

It’s not a burrito baby!


Taking some time for myself in the hospital. Guess it takes locking me up here to make sure I rest and relax!  I’m calling it a spa day.  I’ve got a room to myself (with a view),  food is delivered 3X a day and if I play it up enough, maybe I’ll get a hot nurse to sponge bathe me!! 

But seriously, I’ve been feeling bad the past couple months.  I am anemic again so have had a two iron infusions so far.  I’m getting B12 shots, eating low sodium and even making juice!  However, nothing was really helping.  With PH and CHF, people tend to retain fluid in their ankles, feet or abdomen.  Lucky me, I retain it all in my stomach, so I look like I’m about 4-5 months pregnant!  Not cute, especially because it’s not even a burrito baby!  Why can’t I retain that fluid in my butt? I’d have a nice round one for sure!  So when my oral diuretics weren’t working, I made sure to let my cardiologist team know.  I went in today and they said they’d better admit me to the hospital for a couple days to use IV diuretics and get this handled! Having all this fluid there pushes against my organs and puts fluid in my lungs making it hard to breathe, eat and sleep.  So here I am, at the spa, watching the olympics and awaiting my hot tea before I drift off to an uninterrupted sleep.  Hahahaha…I crack myself up sometimes!  

Please send your jokes, good vibes, etc! I’ll still be #kickingphintheballs! Love y’all! 

https://www.gofundme.com/4gzbpkhc

Pity parties happen.

So I cried tonight in front of my son, his friend and husband. Had a rough day of not feeling well. We were talking about ten years ago. Ten years ago I didn’t have pulmonary hypertension. I wasn’t on oxygen. I could do things, active things! Today, I couldn’t put my own socks on without struggling to breathe.  
Pity party for four please with me as the guest of dishonor.  I hate that. I don’t like for others to see the side of me in pain, struggling and feeling sorry for myself. I especially don’t like for my son to see it. He hugged me and I know he worries about me and that makes me sad.  It is too much for a kid to worry about.   This just sucks sometimes.