Month: June 2020

Frustration

Recovery is not linear.

 

Some days, I really do feel okay. Other days… I just want to sleep. I go to work most days, thankfully from home, and enjoy my work and learn things. Some days I struggle. Every day at some point, I notice how my shoulders ache. It’s weird because you’d think they’d be happy without the extra weight. They’re still learning, I guess.

 

If I don’t do my physical therapy exercises for a few days? I know. I’m back at it yesterday and today. Back to lighter weights as it seems that the heavier weights might be causing my scars to pop out more. Massaging them to try to get them to be more flat. Trying to balance getting my strength back, losing the weight I’d gained during treatment and after surgery, and not overdoing things so that I can keep moving forward.

A Columbine flower, Yellow center, white petals surrounded by pink petals that make it look like it's in a frame. There are unopened flowers in the background, they're pink.
Columbine flower.

It’s frustrating.

 

We walk the dogs every day. That’s one good constant. I’m even strong enough to walk all approximately 42 lbs of them together on days when my husband has wandered off or is busy. But mostly we all walk together.

 

I don’t go anywhere except on those walks. And to the bank. I use the drive up teller, which is a video call basically. I put a glove on to touch the screen and the buttons, deposit my check, and remove the glove before touching the steering wheel. If I ever do go anywhere, I will wear a mask.

 

I survived cancer. I don’t want to try my luck with an illness that can keep people in the hospital or in their own beds for weeks. I mean, I’ve hit my deductible, so it’d be covered, but…

 

It’s frustrating.

 

My husband goes to the store. Some places, masks everywhere. Others, maybe 50% compliance or less. It’s sad to know how many people just don’t seem to care about others because they’re uncomfortable. I’m still wondering how many times my surgeons passed out on me during my 6 hours or so in surgery. They must have if masks make you breathe in your own CO2.

 

Maybe someone stands by the table and catches them as they fall and then the next surgeon jumps in to take over? I know several worked on me. That’s probably why. Yep.

 

It’s frustrating.

Dark purple iris flowers.
Iris.

 

Makes me sad because I honestly don’t know when the next time will be that I feel comfortable just hanging out around people. I mean, if they suddenly discover O negative blood types are immune? Maybe… but I still couldn’t because I’d hate to be a carrier and give it to someone. I love people. I hate their lack of self-awareness and self-control. Their denial of science.

 

It’s frustrating.

 

But there’s hope. I’ve talked to some friends more than I have in years. It’s been nice to catch up some. To get back into the lives of some people who I really, really care for and love.

 

Anyway. It’s frustrating. But I’ll stay the course. I’ll just have to shrug when others don’t understand my reticence to going out and doing fun things that are inside. Maybe we could go camping, though. Outside. Except I am a fan of indoor plumbing.

 

So, so frustrating.

 

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Sunday Drive

I have been pretty much stuck at home since my surgery in March, so we have gone on  two drives to break up the monotony a bit. The first one, we did not plan and ended up going in a giant circle. Oops. This one, we planned to drive through a few parks. Much better outcome.

A tree-lined dirt road. It's very green with a blue sky.
Into the woods!

The first park was Hillman Park. It’s very rustic and is apparently a good place to go hunting. We saw some people starting a trail ride, so now I want a horse. Except you can’t have just one horse, must have at least two so they can have a friend. Except some horses don’t get along with some horses. They’re just giant dogs, really.

Anyway, we drove through that one - very pretty. Very wooded. Maybe a place for a hike in the future, but not in the fall because hunting. We decided to keep on going and head to a park a few miles past that one called Raccoon Creek State Park. There appeared to be a creek. Check. The group campground was closed, but got out and wandered around there for a bit. There were no lawn mowers, no weed trimmers, no people, even. Just quiet and birds singing.

Until someone showed up and also started wandering around, so we left. As we drove, I poetically noted the dappled light filtering through the trees.

A fireplace that used to be inside of a cabin. It is about 20 feet tall and made of stone.
Giant pizza oven!

We headed to the other side of the park and saw that the normal campground appeared to be open, and then drove over to the beach to wait in traffic for a bit. There was maybe social distancing going on? We did see someone in a bikini and a mask, so people are still trying. That’s good. The beach was a mess of cars and people and we drove around the parking lot and left, waiting in line to get out since there was a bridge with only one lane and only one car could go at a time.

Then we headed home. The GPS, having lost signal, had decided we were now doing everything in kilometers, causing some slight confusion as to why it thought we were doing 70 until we realized what was going on, and also advised us that the approximate time we would arrive at home would be four, colon, 30pm. Okay.

We turned on to Potato Garden Run Road and shortly thereafter were back to miles per hour. What a fun road name. We passed a sign that said: GOT FAR WOOD. And, well, we should have stopped. I didn’t get a picture, but believe me, it was there. It made us smile, and you know what… we do have a far pit. Probably should get some far wood.

Arthur chi-mix giving sad eyes with his head on my purple robe.
Why did you leave???

We arrived home around 4, colon, 30pm and were greeted with so much joy. I actually think they’re relieved we left them for a bit - get some doggo alone time to just chill and not worry about where the humans are wandering about in the house.

It was a nice day. Much needed. I hope we can go camping soon. We haven’t gone in ages and I miss it. But I’m only going if the terlets are open.

 

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I Graduated!

From physical therapy, that is. On Friday. Yay!

 

While the world is changing around us - hopefully for the better - it’s good to remember that lives are still going and the small victories are happening. So, yay! I graduated. What now?

 

I had been going every two weeks after going twice a week and then once a week. My therapist taught me basic lymphatic massage along with exercises to strengthen my chest, back and shoulders.. I purchased lymphedema sleeves to wear when working out or gardening. Yes, gardening. Except I want different ones for everyday wear. But they’re expensive.

A Columbine flower, Yellow center, white petals surrounded by pink petals that make it look like it's in a frame.
Columbine flower.

Which brings me to the topic of lymphedema wearables and the lack of insurance coverage. On December 12, 2019, the US House of Representatives included the Lymphedema Treatment Act as part of HR3, a drug pricing bill.

 

The Senate has no plans to pick this bill up, because from what I can tell, they are just focused on confirming judges willy-nilly.

 

Why do we need this bill? Because lymphedema wear is *expensive* and for many people, medically necessary. And also not covered under most insurance plans. My sleeves were $60/each. I have not yet developed lymphedema, but could if I don’t take measures to protect myself through light compression on my arms since I had lymph nodes removed.

 

Quick reminder: The lymphatic system moves fluids around your body, much of it nearer to the skin. Lymphedema is swelling caused by a faulty or damaged lymphatic system. It cannot be cured, but it is 100% treatable!

A small red rose about to open.
Red roses.

If you can afford it.

 

I am happy to be able to afford it. I am fortunate. Last week I didn’t get a blog post up because I have been working so much and been so busy, I just did not have the energy to write. I’m thankful I have this weekend off and have finally gotten up the energy to write. I still get tired more easily than I used to. Hoping that will eventually go away.

 

So, I guess the only ask I have is for you to vote this fall. Vote for people who want health care for all. I’ve never understood our system. I do remember hoping I never got sick because the premiums were high enough without having to worry about deductibles and out of pocket expenses. If you’re reading this, well, we know how that turned out. I had a lot of help last year with that - y’all are amazing! - and some this year, but I’ve also put the last big payment on a payment plan.

 

Vote for people who are interested in protecting the most vulnerable. Children should never go without health care. Adults should never go without health care - right now is a good example with so many people unemployed who had health insurance through their jobs. Sure, they were all eligible for COBRA (Consolidated Omnibus Budget Reconciliation Act) insurance, but if you’ve ever been offered COBRA, you’ll know it’s unaffordable if you, well, don’t have a job.

Light purple iris flower in the foreground, an unopened one behind it and then a spent flower.

I’m thankful we have health care for our senior population, but it’s still so, so expensive. No one should have to choose between paying for a prescription or paying their rent. The rent will win, and a treatable condition gets out of hand, leading to more hospital readmissions and more expense on the system.

 

And let’s help out with this lymphedema stuff. If it gets out of control because someone can’t afford compression garments, they end up back in the hospital and end up costing more to care for than if they’d just been given two sets of sleeves to wear.

 

Vote to take care of each other. That’s all.

 

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