Warm weather is hurting me 5.7.19

I snapped this shot while my friend drove me home from a doctor appointment. I love Mt. Rainier but have never hiked on it! I kinda gave it up in a divorce in my twenties and then moved away (long story). I hope I can get there one day despite my health issues.

I snapped this shot while my friend drove me home from a doctor appointment. I love Mt. Rainier but have never hiked on it! I kinda gave it up in a divorce in my twenties and then moved away (long story). I hope I can get there one day despite my health issues.

I’m not doing so well in this warm weather. I was so wrecked yesterday from a long doctor appointment, the weather and my class, I didn’t have time to write in here!

I feel like such a Debbie Downer that I’m not thrilled about the warm weather.

Not being able to eat hardly anything as a former culinary person is one kind of hell.

Being trapped indoors on beautiful days is a whole other level of torture.

Climate change is definitely going to be tough on a lot of medically fragile and elderly. Our systems can’t always handle the heat.

I’ve been giving myself daily IV saline bags (sometimes with amino acids and vitamins) since May of 2017. I’ve noticed my need for more and more saline has gone up, slowly over the past two years.

During the winter last year, I NEVER needed more than one bag. This winter, I gave myself two bags per day quite a bit.

There is a drug called fluticasone which helps my body reabsorb fluids. It’s a steroid though - not as bad as prednisone but still not awesome. It makes it harder for me to sleep.

I haven’t gone into how I struggle to sleep these days but I will at some point. The idea of taking something that’s going to make it even HARDER really bothers me. It also makes my skin look like shit, so there’s some vanity too - I will admit it! But hell, so many things fuck up my skin, I’m not going to stay away from a medication for that reason alone.

SLEEP, however, is another story.

My fingers were cracking open so bad the last couple of days and I gave myself two liters per day the last few days, and STILL was SO incredibly dehydrated, that I broke down and took the fluticasone last night.

I felt like such shit the last few days that I only felt relief when I swallowed it.

I felt legit nausea last night - which some people get when their GI doesn’t work right but for some reason I don’t really feel a lot of nausea, it wasn’t even that bad for me during chemo - but when I’m really dehydrated in the warm months?

Nausea, more dizzy, losing my balance, spacey. Too many of these things are simply unsafe. Not to mention, I’m already struggling with some of these things since my food intake has decreased.

That drug works wonders! My hands aren’t cracking anymore (it fucking hurts ok? It’s like a whole bunch of paper cuts and when I put water on it when I wash my hands, it REALLY hurts). Some able-bodied respond: oh my hands are cracking too!

Ok, gotcha. But you’re insides are cracking and you’re still able to take a shit so….please understand that we’re not in the same boat!

The dehydration, like not being able to eat, is very, very scary for me.

I worry that my IV needs will keep increasing to the point that I’m not able to ever stop a line. It may come to that! I’m considering learning how to change the electric pump so that I could have say one liter of fluid go into me over four hours instead of two hours. I’m sure that would be a better replication of a normal body.

However, it means dragging the bag and pump around all of the time. Now, if the needle wasn’t in the worst spot ever (ok, I’m sure there are worse), and the machine didn’t beep EVERY time I bent my arm, I’d probably do it. But as of now, it’s a pain to do stuff around the house, it’s hard to do things like laundry or cleaning because essentially, I’m one-handed for that time period. Not entirely - and no disrespect to any amputees or people missing limbs - I am just pointing out that I have limited motion when that IV bag is on.

So, I will consider taking fluticasone to help. It’s so weird to see how my hands have essentially healed up overnight just from that little pill. That means I’ll be able to digest better so that’s a good thing!

I’m so excited for the sunshine and not being trapped indoors on gray days. But I have to say: this weather makes me feel SO shitty, I’m already looking forward to fall!

It’s so warm now! I didn’t start taking fluticasone until end of June last year! I can’t believe I made it that long. That means I’m taking it 7 weeks earlier this year which is worrisome.

Fortunately, my angel hired painters to paint the room that has the treadmill - where I feel like a fucking hamster on a wheel each night - so that I can start having people over! Maybe host a support group for chronically ill! Maybe work with teens in some way! Anything to stave off the feeling of being trapped. I will start looking into humidifiers to keep the air moist since the air conditioner (thank goodness my mom insisted my dad install one years ago…THANK GOODNESS) is so drying.

I’ve been trying to make peace with the fact that I will have to essentially start creating an indoor laboratory in order to determine optimal levels of things like moisture and temperature for my body.

There may be summer days where I’ll just have to sit in a bathtub. The skin absorbs quite a bit of water! I’ve discovered that if I add oil and epsom salt - instead of eating those things - an hour bath feels like I had about 1/2 liter of saline. This is good. It’s a healthy way for my body to stay hydrated.

However, I’m not sure about the water quality. Mercer Island has had some E. Coli issues and I can smell the bleach in the water - out of ALL my senses, my olfactory senses are the best! This makes me good at cooking. But not so much fun out in the world. If I could transfer some of my smelling ability to my eyes, let’s say…now I’m super near-sighted (-6 which is pretty bad) AND I struggle to read small writing. I know! I’m a fucking genetic lottery winner!

This weather makes me very tired too. My blood pressure tends to drop - that’s part of the cluster of symptoms I deal with which the IV saline helps alleviate, when I take in more fluid, my blood flows more easily - when that happens, I get lower energy. I also have a lot going on these days which isn’t helping my sleep. I’ve got to finish preparing the rooms to be painted which Sarah will, thankfully, help me do later today. I’ve got to pick up estrogen patches since the last one I had on fell off after I took a bath.

So many things happening! My mind is buzzing. But I have therapy tomorrow which reminds me to tell YOU that my next podcast is on therapy and why it has worked for me. You can subscribe on itunes and Google play to get updated when new ones arrive! My next one will be on Racism in America, I’ll be interviewing a friend about it. Lots of interesting topics coming up!

I’ve got to get ready for my appointment. As soon as I get back, I will have to use my limited energy to get the room ready. The painters were willing to start right away and I’ve been wanting this for so long, I said YES like the dutiful improv student that I am!

Until next time….

Much love,

Jules