Wheelchair Travels

I realized yesterday that for the first time in many months, my health was better on Friday than it was on Monday. I had two appointments last week, one with the Ortho that gave me the hip injection and one with a Podiatrist. I have an old ankle injury and tendonitis in the same leg that has the labral tear hip problem so I'm now in a walking boot. But that actually translates into me being able to walk without crutches or the wheelchair, even outside on uneven ground.
With my newfound freedom I decided to stop by the campfire at my kids' house and I got to reconnect with old friends I hadn't seen in a long time. It felt good to be on my two feet and I feel taller than I ever have. I truly can't imagine being in a wheelchair full-time, especially without the ability to stand up even momentarily to reach something or see something up on a countertop. I'll share a tip I learned while being in the chair: don't lean on, touch, or begin to push someone's wheelchair without their permission. There is nothing more frustrating than being headed in one direction, stopped for a specific reason, or otherwise going about one's business when a "helpful" person decides to take over your bodily autonomy. I am generally a quiet person, and only become assertive if absolutely necessary, but I have politely let people know that grabbing the back of my chair is more of a hindrance than a help. If you do want to help a disabled person, perhaps holding a door open or reaching up to pour their fountain drink would be a better bet, but always *ask* if/how you can help.
This morning's coffee was delicious, but our pantry was pretty bare. And SNAP money doesn't come out until the 4th. However, at about the time to start cooking lunch, our amazing neighbor came over with some chicken and other ingredients. So today we'll cook and break bread with her. The chicken will probably end up being curry chicken! 😋 Also, CB starts his new full-time, permanent job on Tuesday. Which of course is fantastic news for us but leaves me a bit nervous. I know I am in much better shape being left home alone than I was a few months ago though. Trying to stay positive. Also I want to go to our local charity called "Salt and Light" and sign up for their volunteer program. I think I could be a greeter sitting in a chair at the door and they only require 20 hours/month. Then I'd get store credit for what they sell, which includes groceries, housewares, and pretty much anything else we'd need.
Another exciting thing for me is that my lease is up at the end of July! And I assumed I'd be resigning for another year, but with Chris and my forces combined I know we can afford a whole house! Maybe even a 3 bedroom house! It will be little, but still in Urbana. I can imagine the kids having a room to sleep in and I think the extra room would have to be a space for C to spread out and make noise with all his toys. And that thought makes me feel happy and content and keeps me going another day.
When I think about all the things I couldn't do without help, instead of feeling sad and helpless I just feel grateful, appreciative, thankful, and glad that I have the community I do. Love to all and thanks for reading and sharing. 😁

Rainbows and Narwhals

Hi all. I'm really hoping that some of you are "meeting" me for the first time. So, allow me to introduce myself. My name is Erin (aka. Latitude) and I was born in Champaign, IL and now reside in it's sister city, Urbana. I started this blog over 11 years ago when I was pregnant with my daughter, Ava. I had been working as an Emergency Department RN but was very sick during pregnancy and had to be on light duty. The hours spent in front of the computer back then made me feel like a "real" writer. My favorite poet/prose writer FOLLOWED MY BLOG, GUYS. He even sent me a personal message. I was hooked on having an audience read what I had to say. It was at the height of blog popularity and I followed lots of other bloggers, many of whom were pregnant and/or had new babies.
Over the years I spent all my time with my now two children, working and raising them and dealing with more health problems than anyone should have to deal with in one life, so the blog got left by the wayside.
As I became sicker and sicker this past year, and my life changed immeasurably for the better when my partner Chris moved 2,000 miles to be with me, I found myself in front of the computer with so much more of a purpose than I've ever had. I have written children's books already and can see the illustrations in my head. (My new blog with not much content, Always Ambidextrous is dedicated to that project.) I have journaled with fury on my computer and in whatever notebook was closest to me while I've been fighting for my life.
There's so much to say and explain on the medical side of things but I'll start my listing my most debilitating diagnoses. Gasteroparesis (stomach paralysis), Esophageal Spasm (completely benign yet debilitating chest pain), Bipolar Type II (ups and downs, highs and lows, complicates and confuses my brain). I also have a labral tear in my right hip that's been keeping me in a wheelchair for the last several months and I have a surgery coming up. Hopefully that explains that when I say "fight for my life" I mean it.
I have been spending the past several months sharing my GoFundMe link all over the place begging for help paying for my medical treatment, food, bills, you name it. I just spent literally my last $2 (I think there's 87 cents in my account now) promoting this website on Facebook. I know that a lot of people will not understand why I would spend anything on this when I don't have enough food in my cabinets to make it until my next income source arrives. However, I still need help. Right now that help could come in the form of GoFundMe donations but I do still look to the day I am a PAID WRITER! 😀 I will be running ads on this site if I get enough traffic, and probably there will be ads on my business Facebook page. But I want you all to know that I am SO much happier getting paid for what I can do rather than be given money for all the things I cannot do. I don't believe that my community should be paying for my medical bills. I believe the government should pay for all of our medical bills (single payer) but that's a rant for another day.
Right now I just want to say a deep and genuine thank you to everyone who has helped me (and us) get this far and look towards a brighter, more hopeful future. And if you haven't seen it before, a donation or share goes a long way. Find me on Facebook, Twitter, or Insta. 💕
Rainbows and Narwhals for Erin's Recovery

Him

Tuesday is turning out to be a busy day talking to doctor's offices, insurance company, and the bank. But as I was organizing things on my computer I found this bit I wrote about my love, Chris or CB as he'll likely be called here. I don't have it in me to write something new that does justice to how I feel about him, so I'll hope this can suffice. Again, thank you for reading...seeing my page views feels like I am getting support from around the world. I would also love to see comments on here if you have a moment!

"She is so blissfully surprised as he leans over for a goodbye kiss that she claps both hands over his cheeks before doing so making him say “Oh! Thank you!” with sincere gratitude in his voice. He’d already put on his bike helmet and turned around to grab his bike off the wall as if it was feather light. He was out the door and she sighed through a smile bigger than she’d felt on her face in a long time. She had never experienced this type of love before. A typical love. One that involves the comfort of sometimes getting an incredible goodbye kiss and another day hearing “is it okay if we pretended we kissed goodbye?” and saying “yes” genuinely because she feels so secure. As she turned to load the bowl, still smiling, she thought about how unlikely this whole situation had seemed to her beforehand and marveled at her own ability.

In bed a few days previously, he told her that he can sense that she’s holding back with kisses. She pulled away to look at him with a puzzled look because she wasn’t quite sure what he meant. He said, “I just hope that someday you get to the point where you are excited about a kiss and not just accepting a kiss.” The knife to her chest was sharp and had a blow to it. She knew immediately what he was talking about then. He was still smiling for the briefest of seconds until he saw her brow furl and chin quiver. She lowered her head and apologized. All she could think about were the reasons that make kissing in particular feel incredibly intimate and caused her to always have a level of reservation. It had never gone away completely before. Drinking, or a starry night, could comfort the scared animal that just wanted to turn and run, but it would only last moments. 

“I’m not being judgmental or trying to rush you or anything like that. Just know that I notice,” he said, stroking her back, which had hackles raised and every muscle twitching, ready to fire. Immediate peace. Of course that was true. She knew that already but hearing it helped snap her out of the place of fear that was telling her she will never be capable. That she is broken, and to top that off how must it feel to be f#cking someone who doesn’t even want to kiss you? It took her a week to realize that he felt how much she’d wanted to give in, but couldn’t, and by the next day she was enjoying having his strong tongue pressed against hers, feeling the contrast between his soft lips and full beard and breathing in a breath that escaped as the tiniest bit of a moan because he knew it had happened. Seeing his face as she backed away made her giddy because she saw there what he already knew: that was more than just the promised excitement. From then on she craved the way his kiss could turn her whole body into a quiver, or calm her to rest at the end of the day."

Manic Monday

I wake up every Monday already behind. For the past six months I have been chasing doctors, specialists, pills, and allowed many people I did not trust access to my veins, joints, and bones. I have gone from being an upright, standing, working individual to what I am today. 

But what I am today is not what they want me to be. The medical establishment in this country wants me to be a small, quiet, unassuming girl who sits quietly in her wheelchair while they decide my fate. They wanted my disability to be visible. But once it was visible, still no one saw me.

I think it’s obvious at this point that I am not willing to let that happen. I’m not willing to go along with their game. I have been feeling like a beggar on the street. Posting my GoFundMe link, creating a Facebook charity, and even taking the $20 that someone at the grocery store offered when we couldn’t buy all our food. The only "extra" money that has been spent in this house since January has been on food and pills. Of course I am grateful to my community for keeping me afloat, but that’s not the point. Somehow through all of this I still have my home, my car, and my possessions but all of the above are precarious. One extra infection or symptom that needs to be treated means less food for the week. It means we can’t even get a coffee on the way home when we’re dead tired and just want to be awake long enough to enjoy each other for a short while.

But I have two children looking deeply into me all day every day and they love what they see. So for them, I keep going…but I dream of a day when I am getting paid to sit here and write all I have to say because I am saying it for so many of us. Anyone who is disabled, over 65, or has even one injury can be left destitute because of happenstance. Most of us are one paycheck away from deciding between food or medicine. Clothes for our kids or durable medical equipment. Until we are all on a level playing field, this country is not just. There is no justice in this. And it has to stop. Thank you for reading and sharing this. You are helping me more than you know just by being here. 😊

Deep Water

My partner (CB) and I ended up having to take me to the ER overnight on Friday. Because I have Bipolar disorder and the mania was out of control despite my medication and it’s a horrible feeling. But every time we end up in the ER it’s true Russian Roulette, wondering if the doctor will do anything to help. Much of the following comes from texts I sent to the social worker who ended up being assigned to me. She is truly the first person to actually see me, and if anything, it gave me the ability to have a really great day today.

“WOW! Today has been so much fun already! i’m usually spending my Sunday trying to distract myself from the fact that tomorrow is Monday and i’ll have to spend all day on the phone trying to get appointments and medical supplies. Chris and I got to sit in the living room together all morning and play video games while listening to death metal! This is truly the best Sunday I’ve had in months. And I’m going to the library later to see my favorite live music performance. 😊 
Thank you! We’ve both been working so hard at getting anyone to just open their eyes and see me. See us. Because we have all the words in the dictionary between Chris and I but we cannot explain it all with words. But a lot of times the ER doctor at Carle would stand in the doorway and not even come all the way in. And from that point on I knew it would be a huge fight convincing him or her that all I needed was fluids and iv antibiotics and to please just treat me instead of saying 'everything you have is chronic...I can’t help you'."

She responded by saying, “I still cannot believe so many have dropped the ball on you, it’s disgusting.” It’s so validating to have it confirmed that despite the herculean effort CB and I have made, the doctors at Carle just were not helping me, save for one, my Psych doctor.

 After I heard my favorite band play at one of my favorite places today, this is what I posted on Facebook. I think Deep Water goes on my funeral playlist some day. ;)

This song is to all the friends I’ve been drifting away from over the last year, as the waves of illness took me further and further away. But I also know that all kinds of things have a way of making it back to shore after a long journey through the waves. To those of you I miss the most: 
I’ve already sent a letter in a glass bottle to you over and over again and I hope it made its way to you and that you can still read it. 🙂 

Deep Water by The Lonesome Sisters 

“All my intentions and all of my plans
and all of my maps to far distant lands
Float lifeless across the oceans darkened floor
The broken compass of my lonely dreams
Lays buried beneath a shipwreck of schemes
The sound of the wind on the water is all that remains
Way out on the deep blue sea
Let the waves just carry me, to deep, deep water
To deep, deep water
At the edge of this town in a field of wild flowers
You'll find the box where I hid the hour
I walked out the door and hitchhiked to the edge of the sea
and if you look for my home out among all the weeds
and wonder whatever happened to me
Just read the letter I wrote to you in your dream
Way out on the deep blue sea
Let the waves just carry me, to deep, deep water
To deep, deep water
Under the tree where the crows have all gathered
Like stories we bear of things we think matter
I'll meet you out there, where words have nothing to say
And then we'll clap our hands and make the birds fly
And lay in the tall grass and look at the sky
You'll take my hand and then you'll know my name
Way out on the deep blue sea
Let the waves just carry me, to deep, deep water
To deep, deep water”

Future Book Cover

Crudely drawn

Always Ambidextrous: An Infants Guide

This is my new children’s book title. Thought it would take me years to write, hone down, and edit but nope! It’s a board book for the tiniest of babies who must fear what is in their heart. 

We Adulted the SH*T out of Things Today

Had SO MUCH FUN but had so much to do. Learned today that State Farm may have to pay my life insurance premiums and maybe even my renters (and auto??)! So first phone call in the am is to State Farm. It’s a local company adjacent to my hometown of Champaign-Urbana, Illinois. Skip where you can, spend where you must, people! You get what you pay for and if you can, stick with whoever has taken care of you in the past. I got to do that with my love this evening. Watching my kids eat the food he prepared (topped with Ramen for both kids). Here’s the happiest Pano I’ve taken in *ever*.

I HAVE REMAINED TRUE TO MYSELF THROUGH AND THROUGH

Here I sit...and I could not wait to return to the writer's chair. I have so much more to say. I also am in the fight for my life. The wonderful news: I don't have anything PHYSICALLY terminal right now. Two of my medical conditions, Gasteroparesis and Bipolar Type I, can turn terminal at any minute. However I am proud to say that I feel the least suicidal I've ever felt in my life. I have a devoted partner who has shown me EVERYTHING. He has changed my past, present, and always my future.

😍

It might be hard to believe, but I still have a strong relationship with former contributor, Longitude, my husband. In fact I just put my ring back on today. Our relationship is and will remain completely platonic. But anyone who has ever cordially done a shared custody agreement this complicated would understand. Both kids get to come over any time we arrange it. Every day for the next several days. I have established myself ,with ONLY $ from the government, in a small duplex down the street from where the kids live. I couldn't be happier, or more excited to update you on the lives of people I've written about, such as LMK. 😉, if you're here.

I am going to share my GoFundMe link that a friend of ours so kindly made. (I just got to see her today!) I do need help. I will need help. We will need this to be funded in order to keep me going while Chris works to support himself. It's not fun, but it's true. Please contribute financially if you can or spread far and wide to let others know. Thank you from the bottom of my 🌈💜

https://www.gofundme.com/rainbows-and-narwhals-for-erin039s-recovery?sharetype=teams&member=1957392&rcid=r01-155681522336-943c44efcb2d45fb&pc=ot_co_campmgmt_w