Tag: ChronicIllness

I Have Been Sick All My Life

A white woman on a gurney just outside the surgery recovery room. A white physician and a nurse are on either side of the stretcher, either talking with her or pushing the gurney. The photograph was taken at lower than eye level.

I am immunocompromised: Please Consider Me
This has been a really difficult and scary year for me.
And for so many of my friends and fellow disabled community members.
We have heard over and over that our lives don’t matter.
And now that there is a vaccine - the world wants to leave us behind.
We may be slightly more protected once vaccinated
However, we cannot let our collective guards down
I cannot suddenly say ‘yes’ to all these magic gatherings that people are planning
Not until there’s herd immunity
And even then, kidney disease does not have good Covid outcomes
And I am so angry
I feel scared

I am constantly remembering the fact that 
Eugenics actually began in America - the United States
The fact that Alexander Graham Bell wanted to eradicate the Deaf community
In the 1800s my people were systematically deprived of their language
And that is something that continues to TODAY
So excuse me if I am angry
If this year has made me so incredibly scared
That my partner has been carefully working from home all year
That they have done all the medication runs - which we couldn’t get delivered
And I have pretty much stayed inside
And I persist in wearing a mask outside even now
Because I cannot trust anyone
I have so many friends
Who have personal experience with devastating illness
And should know better
If you could reduce your risk of dying - as a well person - why wouldn’t you
Why must you deny the many many years of research
(Which my best friend does so I know how long it has gone on and how serious it is)

Why must you tell me that my life and the lives of others at high risk 
Do NOT matter to you?
And the worst part is
I already felt like my worth was nonexistent
I already struggled with suicidal ideation
I already believed that there was no space for me in the world
WHY must you confirm my fears?
And tell me that my life doesn’t matter to you?
Please please consider me and so many others like me
And please do your part to protect our lives.

This piece was written thanks to a monthly theme from Illuminate, a writing community from The Kindred Voice.

Read more pieces on VULNERABILITY from other Illuminate members:

Being Vulnerable With My Body by Hannah Kewley

Quitting Cold Turkey by Mia Sutton

To The Women Working in Male-Dominated Fields by Christi Jeane

Anxiety Hangover by Christine Carpenter

Butterfly Wings by Megan McCoy Dellecese

with love, eunice by Eunice Brownlee

Arthritis

Yesterday I participated in Northern Colorado’s Annual Jingle Bell Run – the Virtual edition of 2020.

This weekend, Arthritis Foundation Jingle Bell Runners across the country have been coming together to attempt to break the Guinness World Records® title for the largest remote 5k in 24 hours.  To be included in the world record attempt, your virtual “run” must be logged on the RunGo app between 12:00 p.m. EST on Saturday, December 12th and 12:00 p.m. EST on Sunday, December 13th

I started running/walking the Jingle Bell Run back in elementary school – though truly I only remember back to the walk I did in Middle School. I wasn’t really into running until college – so these ‘runs’ were always walks. They were also usually at the Oval on the campus of Colorado State University. I miss running in the snow on the Oval!

image description: a redhead wearing a blue jacket and a purple mask stands in front of the railroad transfer bridge in the water at Canton Waterfront Park.

Yesterday I walked down to the waterfront – Canton Waterfront Park – specifically and then back. There were TONS of people out in Baltimore yesterday as the weather was nice and in the 60s. I’m assuming it’s only worse today. Canton is particularly bad for lack of social distancing and mask wearing compliance.

Once I stopped at the waterfront, I immediately went northwards on a side street and made a point to avoid the main thoroughfares where lots of unmasked people were congregating. Getting outside makes a huge difference in my mental health but with my chronic illness I really want to avoid any exposure to the virus. My illness is on the list of particularly high risk – and outcomes of people who have it and get Covid are really bad right now so I am doing everything in my power to stay safe.

completed run image description: a redhead with a braid and a blue coat stands in front of a faux evergreen and ribbon wrapped light post on the street.

Holiday Gift Guide: Chronic Illness Edition

Knowing what to get for your friends who are disabled, or chronically ill is sometimes challenging – there are allergies to consider, many are poor, living in very small spaces, and often your best bet are things to help comfort – or checking their Amazon wishlists!

Here are a few things that I personally use and appreciate for comfort when I am dealing with pain flares, ongoing colds during the beginning of winter, and being stuck in the house because of illness.

  1. Weighted Blanket – This has been invaluable to me since the loss of my service dog. He used to provide a very direct weight to help me sleep, and this blanket does a fairly decent approximation. It has also anecdotally helped many other people both disabled and abled.
  2. Electric Blanket – I prefer the Serta and Sunbeam brands – and I especially love the reversible sherpa and fleece throw I have on the sofa right now.
  3. Kindle or E-Reader – I get so much mileage out of my Kindle, in general, but especially when I’m sick. Cold and flu season means I spend a lot of spare time inside in bed or on the sofa catching up on sci-fi reads. E-readers are especially good for disabled people because we can check out books from the library on them – you can change the formatting to larger or smaller letters to help with vision – and they are much lighter than chapter books or other tablet readers to hold for long periods of time.
  4. Car Adaptor Electric Blanket – This blanket is ideal for long car rides over the river and through the woods to grandmother’s house – or Aunt Janelle’s in my case – I love it because we have to keep the car colder for both my partner AND my service dog. This helps me regulate my own temperature and stay comfortable for long periods of sitting.
  5. Contour Orthopedic Cervical Pillow – This pillow has helped immensely with neck and back pain from a pinched nerve. Supposedly sleeping on our backs reduces pressure and compression to help with chronic conditions. It is also helpful if you have sinus problems – for example – I notice my partner snores if he’s not sleeping on his back, it’s particularly bad if he ends up on his stomach. We both have these kinds of pillows to support back sleeping.
  6. Bathrobe or other cute loungewear – I personally linked the bathrobe because I like that it goes well with my final dream gift, and it is nice to have something easy to throw on to answer the door when you spend all day on the sofa.
  7. Coleman Inflatable Hot Tub – This hot tub was a wishlist purchase. After spending a weekend at the hot springs in Colorado, we realized that a lot of ongoing pains we had were drastically reduced. So my partner started investigating how to go about getting a hot tub in a Baltimore row home — let’s just say that wasn’t a very inexpensive or easy endeavor. He finally came across the Coleman hot tubs and realized we could do it! We got the square one because we’re very particular about shape and aesthetic but the round ones are even cheaper! This is a GREAT family gift.

Let me know if there’s any particular disability mitigating gift you’ve thought of or given that you loved over the years. Thanks for reading!

❤ J