Chronically Humorous

If there’s one thing I know as a Jew, it’s that no matter what happens, we need to keep a sense of humor during the hard times or we will never survive until the good times. That’s factual Jewish lore…straight from the Jew’s mouth…errr..hands…well you get what I’m saying. You don’t have to be Jewish to have a sense of humor, though. Obvi. I am merely pointing out what has inspired me to keep the home humors burning. 

Recently I came across a small yellow smiling bladder pin, call the Urine Luck pin. How adorable and weird is that? There was also have a magnet with that same smiling bladder that says, Don’t Stop Relieving. Two things about that…1) How cute! 2) This company called I Heart Guts makes plushies, pins and more, of the human organs. So those of us with chronic illnesses can embrace our dis-ease(s)…if you’re into that kind of thing. Personally…I am. They have this adorable yellow smiling bladder plushie, that I one day hope to take a selfie with. Maybe it’s a stand in for my actual bladder and I want to show my bladder how much I love it…so what if it is? Nothing wrong with a little self-love.

image-teal-colored-bladder-plushie-with-two-button-eyes-and-a-slight-smile-on-its-head-is-a-large-bandaidAnd then I came across an IC bladder plushie that stole my heart immediately. It’s teal, which is the color of IC awareness. And there’s a little bandaid on it… it is just perfection. Someone posted it in an IC support group on Facebook and they said they made it. As soon as I saw it, I knew I had to have it. I sent her a PM and asked if she sold them and where I could buy one. On her adorable Etsy shop, StitchandStuffed. (I do love me some Etsy!) I bought it and I anxiously await its arrival. 

It’s no secret that I, and other IC warriors, have to use the bathroom a lot. I don’t know about them but I hate sitting on a cold seat. I always dread it. And then I saw this whimsical gem of aimage-toliet-with-a-seat-cover-seat-cover-is-pink-with-white-polka-dots-and-has-a-bow-on-the-top-left-hand-side toilet seat cover, and I said to my cat, Marzipan, “Tell me I don’t need that in my life, Marzipan!” Marzipan looked at me like I was crazy and said, “Heck yea you need it!” People who know me, know that I love polka dots and the color pink (among other colors). So how cute is this seat cover? I haven’t bought it… yet. But I can just imagine…having to pee yet again. Walking to the bathroom with dread bubbling up inside of me because I know it’s going to hurt and I hate sitting on a cold toilet seat. And then I see the toilet seat cover. How can I not smile?? It will keep my tush warm, comfy and it’s just cute. Plus, when people come over and they go to use the bathroom, they will be like…what the heck?? It’s the little things in life. A bladder pin, a bladder magnet, a polka dotted toilet seat cover… etc… Obviously, these things are not laugh-out-loud funny. They are amusing and add whimsy to life. But humor comes in many forms. We cannot take it for granted. 

Something else toilet related that gives me a good laugh is this ongoing schtick me and Aaron have going, toilet related, of course. He says he always puts the seat down, which he doesn’t. So he started taking pictures each time he put the seat down and so I started taking pictures of each time he leaves it up. When it is all said and done, I do reckon that we will make a lovely wall collage of these pictures. It’s something we always joke about and we always text each other the pictures of toilet seat up or down. 

But each day is a depressing new struggle that just seems to bear the weight of all the days before it. That is so…depressing! Who wants to hear that or feel that all the time? Not me. But that’s my reality. And if you read my blog post from yesterday then you will know that I do struggle with chronic grief. But that’s why I am posting this because I have more than just grief. I have humor too. I have to find the things in this world that are funny, humorous, silly and whimsical, to get me through. Like bladder plushies and pins.

They say that laughter is the best medicine. Well anyone who is chronically ill might disagree, if only because we all know that laughter will not fix or heal our chronic pains. But laughter certainly is a good distraction from the pain. So when I’m in a lot of pain I often turn on Netflix and watch something funny to keep myself amused and my brain occupied. 

Like I always say…laugh or cry. Yesterday I cried. So today I am laughing. 

a-good-laugh-heals-a-lot-of-hurts-madeleine-lengle
Image: A good laugh heals a lot of hurts – Madeleine L’Engle

🔯And this is for my fellow Jews and people who appreciate Jew jokes 🙂 🔯

image-cartoon moses walking through desert saying "this way follow me!" a group of people behind him. a female holding a map and talking to a man. Caption says After 30.5 years of wandering the desert, Mrs. moses secretly asks for directions.jpg
Image: Cartoon Moses walking through desert saying “This way! follow me!” Group of people behind him. A woman holding a map and talking to a man. Caption says After 39.5 years of wandering in the desert, Mrs. Moses secretly asks for directions.

 

 

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Chronically Grieving

It can be said that people who are chronically ill are often in a perpetual state of grief. That we are constantly grieving our losses…our health, our food, our friends, our habits, our errands…our lives as we once knew them. 

And I will just tell you right now, all of that is completely true. I feel as though I am in a constant state of grief. In an emotional upheaval that will likely never be subdued. I miss being Rachel. I miss being me. 

I am being forced to create a new identity that I am unfamiliar with. I don’t know this person. This chronically ill version of Rachel, who is but a mere shadow of my former self.” – Rachel Bob

This Rachel, who can barely walk up a flight of stairs without feeling like she will collapse from the pain. This Rachel, who tries to make sure she has everything, but if she forgets something that is just 15ft away….she views it as though there is an ocean between her and the item because for me to get up and walk that distance is often incredibly difficult and tiresome. I always think of it like viewing a mirage in the desert. I see the item, like my water bottle, and in reality its just 15-20ft away.  That’s usually when I remember the pain I will be in just getting there, and then that distance suddenly becomes a vast wasteland between me and the water bottle that I want so badly. And I see it getting farther and farther away… until it’s completely out of reach.

Who is this person? When just a few months ago I was myself. I was Rachel. The Rachel that enjoyed walking and wouldn’t mind parking at a distance because I had the privilege of being able to walk. I miss being able to walk.

People keep telling me I have such an amazing outlook on life. But do I? What makes my outlook on life so good? Because I have this blog where I can vent or because I haven’t put myself out of my misery yet? And people tell me I’m handling this so well. But I don’t feel like I’m handling any of this well. I feel as though I am struggling to keep my head above water.

There are so many changes happening at the same time that it’s hard for me to get back up again, once I’ve fallen off that darn horse. Like… I’m requesting accommodations from the Office for Students with Disabilities for my graduate classes. Accommodations as simple as being able to turn in an assignment late, not come to class or leave class early. That seems like nothing, doesn’t it? Actually, it sounds kind of awesome… all those extra benefits that most students don’t have. But I just had to jump through a bunch of paperwork hoops and admit that I’m disabled and need accommodations. Am I disabled??? And if I am…is that such a bad thing? Or am I just human? Maybe we are too hard on ourselves…specifically, maybe I am too hard on myself.

I mentioned before in a previous post that I use migraine glasses, which help reduce my migraines immensely during my classes. Which is awesome. However, they aren’t my favorite look. I had to buy a rolling backpack, which might seem like a silly thing but to me it’s admitting defeat. And think about it…A rolling backpack represents the knowledge that I can no longer carry my bag for one reason or another. I can’t because of my health. That doesn’t make me feel better about it.

Aaron bought me a gel seat cushion to use in my classes because the chairs put too much pressure on my bladder and pelvic floor. It’s really comfortable, but it’s kind of bulky. It has a convenient handle on it so I can put it over the handle of my rolling backpack and not have to carry it. It decreases my pain levels and allows me to sit through class easier. That’s good, right?  In theory…yes. But all of these little things add up… requesting accommodations, the rolling backpack, the cushion, the migraine glasses, etc… I never needed these things before. Why now? Will I always need them? I don’t know. I am doing my best to keep my head above the water. People see me making these changes for myself and assume I’m adjusting well…that my resolution of self-care is a success.

But in reality, my IC and my migraines are constantly pushing me under the tide. To be sure, my IC is my main issue right now… the physical exhaustion and extreme pain I feel because of it… is just ridiculous.

It’s hard to understand if you don’t have a chronic illness what it’s like to be grieving constantly for your health. But I think it’s safe to say we all understand grief. We all have known loss in some form or another. The loss of a loved one is one of the most difficult losses there is. On July 29, 2016, I lost the love of my life, Mikey. He was everything to me. He was 18 years old and we were together for 18 years. I was 12 years old when I met Mikey, it was love at first sight. He was and will always be the love of my life. Don’t get me wrong, I love my cats so much. But there can only be one first love and Mikey was it for me. He was there for me through thick and thin.

The grief I feel over Mikey is so heavy that I feel as though I have to wade through it daily. This is deep and personal grief that I don’t share with many people, but I feel the need to share it now because I want people to think about a loss in their life that caused them grief.

image-black-dog-mikey-head-resting-on-front-leg-ears-perked-up-and-eyes-drifting-off-to-the-side
This is my all time favorite picture of him. Image: Black chihuahua/rat terrier mix dog with head resting on his paw, one ear pointed upwards and eyes drifting off to the side.

 

B9C42BB2-F98A-4ED2-A11D-986F3A2A4A74.GIF
Gif of Rachel and Mikey. Rachel kissing Mikey’s smooshy face.

So why am I telling this story? Because loss impacts all of us…grief touches all of our lives at some point in time. There are different kinds of grief, different levels of grief. There is the Kübler-Ross model, that lists out the five stages of grief.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Each of these stages of grief is fluid, there is no set time frame for them to happen. Nor is there any set order they should happen in. You can go back and forth between any and all of them. There is no right or wrong way to grieve a loss. So when I think about grieving my health, does this model apply? Yep.

I can tell you right now I did not start this journey with denial. Oddly enough, when I was first diagnosed with IC, I started with acceptance because I thought I could control my IC. I thought I could have it beat in less than a year, which of course is incredibly unrealistic…which I know now. But because at the time I knew nothing about the reality of IC, all I could do was accept it and try to do the best I could. I am no longer in acceptance. I left acceptance awhile ago. I fluctuate mostly between anger, depression, and bargaining.

And yet I feel guilty for feeling this way. But why? Well, because my whole life has just been flipped upside down. I’ve had to quit my passion, which was working with DeafBlind people. Just imagine the thing you are most passionate about in the world. The thing you dedicated your life to… you found it and you have immersed yourself in it completely. This was my life…and now…it’s not. It truly breaks my heart.

How can I not grieve???

My life…that I so carefully cultivated and grew… that took me years and years to find my path. I was so lost when I was younger. I only knew that I was meant to help people, that I was meant to change lives. When I found DeafBlind work… it was kismet, bashert, meant to be, fate. It was everything I ever wanted a job to be… hands on and working one on one with people who I care about. I dedicated my life’s work to this. And now??? Sure I might be able to do some work with DeafBlind people here and there in the future if/when I am in remission. But I can’t get my hopes up just yet.

“When I think of remission… I think of a soap bubble. It’s not only beautiful and amazing, but it’s fragile and easily destroyed.” -Rachel Bob

And when people who are chronically ill have the hope of remission in the palm of their hands or floating just above them… the hope drives their every behavior and motivation. The thought of remission is what makes me continue the Keto IC diet, even though it is really hard and I just want a sugary delicious cupcake so badly. The thought of remission keeps me going when I have to swallow my pride and use a rolly backpack, a cushion, migraine glasses, etc… Even though I keep the hope of remission, the grief is still there. The grief does not just disappear.

But what we all need to remember is … that’s okay. We are allowed to grieve our losses as long as we need to.

 

Be on the look out tomorrow for a more uplifting post about chronic humor.