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

Space Mumps

So I've been meaning to write a good post sooner or later, but things are a little strange around here in my head. I also have about no energy and anywhere from 5-10/10 pain at any given time.
I've heard from 4 doctors, with varying types of sentiment, that I NEED to be tested for multiple sclerosis. NOW.
There was a urology test thing that I had to wait >8 weeks for that finally rolled around.  I failed miserably. I swear I could see steam coming out of the Urologist's eyes when he saw I had been living with a failing bladder and had not seen a Neurologist yet. He called my new PCP. (Dropped the old one because they were useless and put me on a medication combination that almost killed me. I have to start listening to my instincts if I'm going to survive this because I knew I had learned that  Drug A + Drug  B = seizures or worse. Although, that was years ago, and I thought maybe newer research had proven otherwise.)
I was then called immediately with a "red flag" on my chart and got in to see the new PCP, who seems incredible, and told me she had never had a urologist call her and she was very glad that he did. She came up with a plan to manage pain and keep me active until my upcoming appointments decide my fate. Unfortunately, the plan isn't really working and she is on vacation this week. It's not her fault; we really thought I'd be back in PT by now and I'm not. 
We've learned a few things.
Longitude and I noticed we weren't able to even say "multiple sclerosis" or even "MS". We aren't going to unless I have an official diagnosis. If we refer to it in speculation we named it "Space Mumps" (Red Dwarf fans out there? Anyone?)
Now that it's been several days, I realize that unless I limit my activity to practically nothing I'm in terrible pain. The medication helps sporadically, and it might be fairly effective if I took it round-the-clock but then I would be going through it at an alarming rate. I've never been on this much pain medication for more than a few days. I called the MD last Friday to see if this is safe, and if so, would they refill it that quickly? I also called yesterday and today and have gotten nurses to call back, but no actual answer.
So, I have been limiting my activity and medication intake but at a certain point I just can't take it anymore!
So, I then do something ridiculously stupid like make dinner or bathe my child and I pay for it for hours afterwards. The pain gets so bad I can't turn on the TV for distraction, the sound of my daughter's voice makes my blood boil, even if she's laughing. It takes every ounce of my energy to be "nice mommy" when she comes in my room and then Daddy or Grandpa can tell when time is up and she needs to be taken to another room.
I am endlessly grateful for the help that I have right now, and I feel like I am so close to the end of the marathon (a diagnosis). 
I don't have the assertiveness skills to get my point across to the person on the other end of the phone that I need help NOW. 
I HATE going to the ER for pain relief. They are generally nice but it takes hours and I feel like a drug-seeking criminal. A lot of this comes from working as a nurse in the ER and we would say "why can't this patient's primary just control her pain so we don't have to waste our time on something this stupid"? or worse: "this patient is surely just here seeking drugs; she's been here 10 times in the last 3 months".
(I've looked; the majority of those visits were me being concerned about urinary retention and I have only come specifically for pain medication and/or imaging twice. One visit was labeled "suicidal ideation" because Mike found me on my bed crying hysterically because the pain was so bad I had terrible thoughts that I could not get rid of. And a plan. And I knew that if it was that bad, I needed help.)




I decided to open up about all this to my friends and family via email updates because from my experience, when someone I know is sick or going through a bad time, I want to know how they are doing. Even the worst of it. Not for any other reason but because I care about them. Also, I want to know how I can help, even if it's just sending an email back saying, "that sucks, I'm sorry". I have had family members/friends/acquaintances handle things completely differently. Suffering in silence? Perhaps. Maybe actually not doing too bad considering the circumstances? But how does anyone know? And if that's the way the want it, I try my best to respect that. Most of the people I'm referring to have died. I do remember them as happy and vibrant, but Jeff, I also wish I knew how you really handled the worst. Did we help you? Were we there for you when you couldn't ask us to be? Did we give you space when you needed it? I hope so. Sometimes I stand at your grave and ask the wind.


I am not going to die. Even worst-case scenario is pretty darn good considering what some of my young friends have gone through. It's a common, well-researched disease with lots of treatment options. I've chosen to be open about how I'm doing and what's going on not because I want sympathy or praise or damnation, but because I know people care. Then can choose to read or not read my emails, they can ask me to take them off the list or just send me to spam. But this way, we all have a choice, and I hope you can respect mine. I'll keep you posted.