Taking Care of Yourself With Chronic Illness

Every once in a while, a well-intentioned family member, a friend, or a medical professional will tell me I’m not fighting hard enough, that I’m not taking care of myself, et cetera.
The opposite used to be true – I would receive compliments from my doctors for the presentations I would make each time I came in. One nurse said she could tell I was not succumbing, and complimented me for my strength, saying this was why she wanted to help me.

There’s a few things I want to say here. First, all people with chronic illnesses deserve help and respect, whether you perceive them to be weak or strong. Secondly, when it comes to battles, you win some and you lose some. Wars fluctuate, and health is a journey – it isn’t linear. When I was first diagnosed with fibromyalgia, I was exercising at least an hour a day, every day, sometimes two hours, and had a strict vegan diet. Then winter came with worse symptoms and I was planning a wedding with in-laws I had issues with. My mental health was in the toilet, and as Bruce Lee wisely said, “The body follows the mind.”

My mind worsened as my PTSD triggered and my marriage fell apart before it really even began. Again, the body follows the mind, and I got knocked off of my pursuit of physical health horse in pursuit of improving my mental health and my marriage. Once again reiterating, the body follows the mind.

This is not to give a laundry list of excuses. I merely want to extrapolate a bit that the body and mind are connected, and if the mind suffers, the body usually does too. I’m in more stress than I ever have in my life. My fibromyalgia is kicking it in to high gear.

So yes, I may not be taking as good care of my self physically right now, but I am trying to invest in my mind to get to that point. The only way out of hell is through. A marriage being under the gun takes precedence over buying organic food, especially if you can’t afford it and the two of you are $3k over in medical bills. Could the organic food prevent the medical bills? Possibly. Could a gym membership? Possibly.

This is the crux of it: health being accessible and affordable. Many low income Americans suffer the most from health maladies because they can’t afford preventative care and the care they need from not being able to take care of themselves.

My husband and I aren’t low income, but the two of us on one salary with all of my exorbitant medical bills puts us in a bind.

And I am fighting in other ways – I still stay organized with my symptoms, I’m still productive, and I annoy my doctors if I think something is wrong. I read literature on health subjects. I hope to have a book review or two coming out soon.

Please remember that when people say these things to you, they’re probably trying to be helpful. No one can truly understand anyone else. Take heart.

The F Word: Fibromyalgia

My doctors have been running around in circles after my elusive diagnosis. I need an EMG before everything is finalized, but yesterday I got a second opinion from another rheumatologist and he said the F word: Fibromyalgia.

This was my original diagnosis, before the hypothyroidism, reduced kidney function and ANA levels were found, as well as the fact that I am treatment resistant to literally everything – from your standard fibro meds to steroids.

I talked to my husband about the F word last night and he was upset. To him, this could not be fibromyalgia. Something as horrible and hard to treat could not be fibromyalgia, and the doctor said it did not have a rheumatological cause. How could this be fibromyalgia?

Well, there is a pretty big stigma around fibromyalgia. It’s often made fun of by the media (although I’m not quite sure why, writers are often fucked up people and have illnesses themselves and may be poking fun at their own predicaments) and it’s unexplained. Nobody knows what causes it. After the appointment, noticing I was upset, my mom said that “Fibromyalgia is unexplained nerve pain.”

I’ve been grieving my diagnoses for a long time, and to end up back at fibromyalgia after my urgent care visit in July 2019 would really hurt. But does the fibro explain my swelling, my joints cramping up? Is that my gout?

Just as you’d be confused and angered when some stranger cuts you off in traffic and says “F- you!”, I am equally confused and angered right now.

An illness ins’t a competition and pain isn’t a prize. I don’t want something worse. I will thank God if I do have fibromyalgia. However, the process of grieving a diagnosis is very long, and I have multiple confirmed, and it has already taken so much from me without knowing its name.

That’s my opinion on the F word. If I have it great, if I don’t have it, at least I’m a step closer. But still, I’m here.

Reflection

I follow the Memes for Jesus page. One time I actually messaged them and got no response.

Recently I thought of a meme about PKs, or preachers kids. Often times in the comments of the Instagram page people seem to have the idea that the PK does whatever they want. That wasn’t my experience.

My idea was that PKs on the inside were the song Reflection from Mulan. In the song, Mulan expresses sadness and anxiety for perceiving to not live up to her family’s expectations. Generally all PKs I know are balls of perfectionism and anxiety, whether they end up functional or heroin addicts, Christian or otherwise. This is a mix of expectations from their parents congregation and expectations of their parents to be perfect examples of Jesus to the community.

I still grapple much with my upbringing and my faith. There’s a lot I wish were different, but you do the best you can with what you have.

Sometimes all you have is six chords and the truth or a bible and your tears, and that’s enough.

Whatever enough for you is, know that you are worthy, no matter who your mother or your daddy was.

Coming Back to Yourself

Since my fibromyalgia diagnosis, many terrible things have happened.

I’ve lost my job, I’ve lost most of my friends, I’ve lost my apartment and two cars. But I’ve found I’ve gained a lot, too.

I may have lost my mind but my heart’s come on pretty strong. The things I’ve loved have never left me. My closest friends are still here, as is my family and fiancé, no matter how many times I go Dr. Jekyll/Mr. Hyde at them.

My dream of going to graduate school came true. I read all the time; it’s my biggest solace. There is yoga every morning, a dog in my lap, a sketchbook on the table, a notebook in my purse, my collection of odd lipstick and my wearable glitter. I have, honestly, gone out in green lipstick and glitter on my face to the falafel stand. My fiancé has agreed to help me dye my hair purple after our wedding.

The love is all still there. It never went any where. It just takes some eyes to see it.

This love is what makes living with chronic illness possible. The yoga, the dog, the glitter, and the books are all coping mechanisms that help me block out the pain. Without me I would live in a rainbow free world in black in white where all I could feel is sorrow.

So when you see the things that bring you joy, take a little snapshot in your mind. Let the world know how grateful you are for dogs and books and glitter. Be annoying about your love. Let it overflow, because without it there is desolation.

This is how fibromyalgia brought me back to myself after a huge disconnect of trying to fit into corporate America and “the man.” I was forced to listen to no one but myself to live my life.

Is this a positive? Definitely yes.

Let the love flow through you, y’all.

And now, a recap:

Pocket full of starlight: all the positives in my life are all still there and some have come back to me in the wake of my illness.

Pocket full of darkness: my computer crashes every 5 minutes so all my posts are written on a smartphone. That’s why this sounds like this was written by an 11 year old.

Painsomnia, Worry, and the Dark Side of Fibromyalgia

These past three days I have been unable to do much of anything, even sleep. It’s turning to the close of the semester and I have deadlines coming up for a website I manage. The smoke of worry from the pain fire in my abdomen is rising and choking my lungs.

Chained to an armchair, I try to remember aspects of my identity, or who I am outside of my chronic pain. The things that make me up that aren’t the 16 pills I take, the IUD my body is rejecting, the flames in my esophagus, the knives in my shoulders, or the tension in my feet. I can’t ignore these awful things. My mental powers are not that strong and I would be jealous of anyone who could. Perhaps, I would think to myself, this person is kinky. Maybe they have more secrets they’d rather keep secret to cope with the pain they naturally find themselves in.

But when I am in involuntary armchair mode (which, yes, is way better than involuntary bedridden mode but more guilt inducing) from nights of not sleeping, I think of Harry Potter and the Chamber of Secrets.

In Harry Potter and the Chamber of Secrets, Harry obtains the sword of Gryffindor, fights a basilisk in a gross sewer, and is rescued by Fawkes, the Phoenix.

Right now as I rest in involuntary armchair mode, I know that my body is in some gross sewer under Hogwarts, being manipulated by Albus Dumbledore, fighting the basilisk of fibromyalgia.

All of that sounds pretty bad.

However, I am a true Gryffindor. Once I said “not Slytherin” and I have the sword of Gryffindor. My body will slay the basilisk and I will make it out of the sewer of this pain flare. And if I retreat to my bed, I will rise like Fawkes.

With that, a recap:

Pocket full of starlight: if you can’t find the starlight today that’s alright. Maybe you don’t even like stars or shiny things. You could be a Death Eater. Today is your day for involuntary armchair mode.

Pocket full of darkness: although I’m not generally for conversion therapy, being a Death Eater is generally a Bad Idea. Supporting genocidal demagogues is Literally Evil. Check yourself before you wreck yourself.

Keeping My Identity With Chronic Illness: Good Day Oatmeal Cookies

With my recent breakthrough in positive thinking after my diagnosis with fibromyalgia, I realize at the core of it is maintaining an identity, or keeping myself centered on who I am outside of my illness.

It’s easy to be swallowed up whole by fibromyalgia. When this happens I become bitter, depressed, and at my worst, angry.

Fibromyalgia anger, or painger (the experience of feeling anger because you’re in pain) is something that scares me. When I have painger I irrationally lash out at loved ones, the people I want to hurt the least. Painger takes my nastiness to a 12 on the Richter scale. It could destroy a continent.

In fact, it was for this reason that I started this blog, so I could have a space to talk about my illness, figure out ways to cope, carve out a community for myself, and maybe help others along the way.

Going back to identity and painger, part of a person’s identity involves the positive things they enjoy doing. Investing in positive aspects of your identity can help with painger.

I grew up in my family’s kitchen. The kitchen was the center of our home. When I was six and my sister was two, we tried making our first recipe. We had been left alone in the kitchen (no, I am not a boomer or gen X; Millenial here) and proceeded to destroy it by trying to make our own custom cake. My sister crawled around on the countertops at age two as we used a hand mixer from the 1950s, boiled noodles, and did something awful to the microwave. At the end my sister and I were covered in splatters of chocolate, and the kitchen was splashed in it. Dad came in and yelled at us, but we did it again. We were just successful the next time.

In this positive addition to my identity, I am exploring something I have always loved: baking. Mixing with your bare hands and pounding bread is a great way to alleviate painger and all kinds of negative emotions!

Vegan Oatmeal Cookies

Ingredients

– 2 cups white sugar

– 1 cup vegetable oil

– 2 tsp vanilla

– 2 Tbsp soy milk

– 2 cups all purpose flour

– 1 tsp baking powder

– 1 tsp baking soda

– 1 tsp salt

– 2 cups oatmeal

– 1 tsp pumpkin spice

– 2 Tbsp molasses

– 1 cup raisins

Directions

Preheat Oven to 350 degrees

Wash your hands and combine wet ingredients

Add in oatmeal and dry ingredients

Wet your hands and use a spoon to make rounded balls of cookie dough. Place the balls of dough on a greased cookie sheet and bake for 10 minutes.

My baker chronic illness warriors, may you have good moments and days ahead to live your identities. Remember even if you can’t, you are still you. There are other ways to find who you are.

We all are, chronically ill or not, learning how to live with what we are.

And with that, a recap:

Pocket full of starlight: the negative feelings that come with chronic illness have remedies. There’s almost nothing a warm cookie can’t fix.

Pocket full of darkness: sometimes our negative emotions can’t be helped. It’s okay if you can’t stir a spoon right now or if you just yelled at the cat. There are thousands of yous waiting on the horizon of life.

How Acknowledging the Good and Bad Helped Me Cope With Fibromyalgia

Have you ever been told “focus on the positive, eliminate the negative?” Do you have a problem following through on that advice?

That saying is almost like trying to ignore a tree that fell through your roof and now it’s raining. It’s also freezing outside, and outside is now inside your house. How are you to ignore the hole in your roof, the tree blocking your way, the rain on your floor, and the freezing temperatures, while somehow making it go away by focusing on the fact that at least the tree didn’t land in the master bedroom?

This is how I often felt when people told me to focus on the positive when I expressed being in pain after my fibromyalgia diagnosis, or the years of suffering leading up to it. I believed I had to acknowledge my suffering as well as the happy parts of my life in order to be productive.

After all, how are you supposed to get out of the freezing rain and turn your house warm and cozy again if you cannot admit that a tree fell through your roof? No one wants a hole in their roof caused by a fallen tree, but if it is ignored, it cannot be helped.

Growing up, I often felt deep emotions. Soaring happiness, rapid excitement, hollow darkness, and deep sadness. I had the entire spectrum of feeling. Usually, no matter the situation, I had complex emotions that confused me. At my grandfather’s funeral, I attempted to help serve food, set up tables, and had no idea I was supposed to sit with my grandmother. Her sisters were there, and as she never saw them, I thought they would be a bigger comfort to her than me. As someone who frequently helps at funerals, I had only rarely been part of the grieving family to be supported. I did not cry when my grandfather died, even though I missed him and loved him. The night before his funeral, I saw a silvery image of him come to hug me as I tried to fall asleep. My grieving process is still going on, and he died five years ago when I graduated college. After the initial numbness passed, I was greeted by regret, anger, and questioning.

This is just an example of how I experience emotions. Another is disaster planning. I have a bad habit for looking at a situation, seeing what could go wrong, and planning for the worst proactively. It’s not an entirely bad trait. But sometimes I will be excited about an idea, will have already run my disaster planning algorithm through it, only for my mother to shoot it down with extremely shallow disaster planning that was, well, preschool disaster planning, telling me I don’t think through things and proceed to forbid or simply kill my vibe. If I’m honest I think the fact that I am expressive and have more of an emotional ecosystem than my parents lead me to believe they think I cannot be rational, so when I am excited, I must have a bad idea.

The truth is, we all have emotions. Some people simply wear masks, like my parents. I am a bit too honest for facades and my feelings give me intuition that I operate out of. It also gives me a holistic approach to situations.

Growing up and today, disaster planning while feeling a positive emotion and not experiencing a total eclipse of the heart when tragedy happened prepared me (somewhat) for my fibromyalgia diagnosis.

When I was first diagnosed, I knew that not everything made sense. I fought for answers, found community, and researched coping skills. My previous posts outline some of these.

However, my greatest teacher for managing fibromyalgia is the yin-and-yang concept.

There is some good in the bad and some bad in the good. The light side and the dark side complete the whole.

Basically, imagine walking into a lit room with a couch in it. The light casts shadows in the room and on the couch you go to sit on.

Your depth perception as you walk to the couch and how you see the couch would be way off if you couldn’t see the light or the shadow. You may not possibly be able to make it to the couch!

When it comes to chronic illness and chronic pain, it is ridiculous to ignore our suffering. However we will not make it out alive by merely focusing on the shadows.

This is why I typically end each post with “pocket full of starlight” and “pocket full of darkness.”

With that said, a recap:

Pocket full of starlight: darkness has a friend, it’s name is light, and they rely on each other. For every pain you feel there is something lingering within waiting to shine on you.

Pocket full of darkness: in order to take the good, you must take the bad. Sometimes even with all the disaster planning in the world we cannot avoid disasters.

How to Make any Man Think You are Irresistible in 12 Easy Steps

Ladies, have you ever dreamed of a man who simply stares at you and says, “wow,” every time he sees you? I know I did, and it happened to me. I’m here to reveal my feminine wiles to you so you too can bag your dream man.

12 Steps to True Love, by Dr. Spoonie Love

1. Be yourself.

2. Develop a debilitating chronic illness that erases all of your precious hard work and goals.

This is the super fun part where people who don’t know you at all may start thinking you’re some poor dumb lazy loser who didn’t achieve the thousands of things you accomplished. You will need to remember these people are idiots, but at this step in the process you have amnesia. The idiots have stolen your brain. It’s not your fault.

3. Make sure you gain 100lbs. Really turns those men folk for a ride.

4. Become so inflexible you cannot scrub your tub or clean your shower.

5. Lose the ability to shower and remove those unseemly leg hairs.

6. Make sure your hair looks like a poodle on a muggy beach.

7. When your hands start to hurt applying makeup, this is perfect, as men prefer a natural woman. You will never have to worry about swimming dates again.

8. Begin to worry about swimming dates due to lack of coordination.

9. Experience an influx of extreme emotions as you realize you have developed a chronic illness and will never be deserving of love or a swimming date.

P.S. You are very wrong about this, which is the point of this ridiculous listicle. xoxo

10. Sit back as the people who already love you continue to love you, and attempt to explain things as needed using any method but interpretive dance.

Should interpretive dance be forced upon you, quietly excuse yourself to a nice couch and use one of your spoons for self-defense.

11. Realize that some people, especially yourself, aren’t going to leave you.

12. Understand that things will be okay, and you are worthy of the people, male and female, who love you.


Going against all common sense, I cut my hair into a curly pixie this past weekend. Stranger still, my fiancé stares at me in awe and breathes “wow.” I think it’s because I followed my 12 step program. Fellas, am I right?

Beauty can come late

Pink roses with pink text "Beauty can come late"

I have a jar of wilted roses in front of my happy light. It’s a wonder my office doesn’t smell like roasted roses, because the happy light has been on for about 12 hours. By the way, a happy light is artificial sunlight, and if you don’t turn it off after 30 minutes, it can catch fire. Maybe it’s the cold or maybe it’s luck, but my flowers (that I’ve had since August) haven’t caught fire yet. Or my house. It’s all right, it’s all good. Have a good time.

And I think about my roses not catching fire, and what it means from a metaphorical standpoint, because I catch on fire frequently. Right now my shoulders and right knee are on fire. But it’s all right, it’s all good. Have a good time. I guess. As far as mornings go this isn’t too bad even though my dad broke the coffee pot. I guess it’s a penny arcade.

But I guess if you’re a rose, even when you’re really dead, long dead, you’re beautiful. And I think about all the times I’ve felt dead inside for years, such as wasting my childhood and teenage years feeling empty inside – and not in the emotional sense. I couldn’t feel anything. Until I took yoga in college for three semesters, I couldn’t see anything. I wasn’t aware of the world around me. It was like having tunnel vision. What I saw was a laser focused object right in front of me in order for me to move. Other times, when I didn’t have an object, it was all a gray or black blur.

See, the beauty was still there for me, even after I came back to life and gained my vision back. The wilted jar of roses is still beautiful, though not socially acceptable, although my fiancé has not said anything about it.

I’m on The Latest Kate’s emailing list and today’s illustration really struck me. It was a pink dragon (!favorite! thing!) that read “Sometimes all we can focus on is making it through the day. And that is enough.”

Just make it through today and you can still have your unburnt jar of dead roses that are still somehow beautiful, and make it to the next morning to have a pink dragon cheering you on (and a plethora of other blessings).

So, a recap:

Pocket full of starlight: there’s lots of beautiful things to see in this world, even if you arrive late.

Pocket full of darkness: you might set your house on fire in the process.