Can Fibro be funny?

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It is really cold here. I have to bundle up to go to the Physical Therapists office.

This morning I was heading out to the physical therapist’s office for my noon appointment when I got a phone call. I had already done the necessary checklist: appliances turned off, clothes in their proper places, face made up, hair done, keys, vapes, phone etc. I double checked all of those things because my brain was feeling asleep. You know that feeling where you haven’t gotten enough sleep or you haven’t eaten? When you have fibromyalgia, they call it fibro fog and it can happen even after eight hours and a full protein filled breakfast. So, it’s sort of random.

Then I got the phone call. While talking to this person I closed up the apartment and walked to the elevator. When we got off the phone I ran back to the door and checked. I hadn’t locked the apartment door. I locked it and then walked two blocks to the bus stop. As I was walking up, I panicked. I thought Did I bring the bus tokens? I walked quickly to the bus and took off my backpack and put it on the bench to search. As I removed it, I noticed my shoulder felt weird. I reached up and there was a zip lock baggie underneath my bra strap.

Okay I know that sounds weird, like I was rolling on a bed of zippies and one just got stuck, but no. I have an icepack that started leaking so we put it in two ziplock bags. I stick it under my bra strap because my shoulder swells up for no reason. So I have to put on an icepack every morning. I asked my doc about it, they have no idea. So I took off the ziplock and found the tokens in my book bag. I have no clue how they got in there. I mean I must of put them there but I don’t remember. I sighed in relief and slumped down to wait for the bus, but I couldn’t remember which one so I asked the next two buses, “Do you go to thirty seventh?” Finally one guys said, “No you want the twenty one.” After I was on the bus I remembered I could have just looked it up on my phone and I was going to thirty eighth.

Just as I was coming to this revelation, husband texted me, “Did you eat?” I said, “Ummmm….no…I forgot.” Then I was thinking, dang it, I wasn’t hungry until he said something, but my appointment was at noon so I had no time to get anything.

I reached my appointment desk and said, “I have an appointment with Melody. My name is Danielle Toone.”

She replied, “Her name is Melinda, right?”

I said, “Yeah, what did I say?”

“Melody.”

“Oh, sorry.”

“Also, your appointment is at 1:00.”

Once I was down in the restaurant sitting at the table free from any more decisions I thought about the fact that before fibro I would have beaten myself up for days about all of these mistakes. I just thought I was ditsy. Nope, I just have episodes of dits, do to that fickle bitch fibro. Don’t get me wrong Melinda has been the most amazing medical professional to me so I feel bad about messing up her name, but I know why it happened and it’s a relief. I’m not mean spirited or an idiot. That is a relief. Sometimes I can make people laugh with my stories and that is fun too (comic relief.)

I am just now getting into fibromyalgia social media to notice the influx of other people who suffer from this phenomenon. I am an intelligent women who is struck with momentary loss of brain. That’s all. It is horribly inconvenient, and mildly embarrassing, but at least I know what to call it and it’s only temporary. I think we should call it #fibrofunny instead of #fibrofog. I much more prefer to think of it as something that doesn’t change me. Fibro fog sounds like something that is debilitating and blinding. I want to be able to say Well this just happens and laugh it off. So, I have fibro funnies. That’s it. Then the next day, or even later that day I am back to be the smart, sexy friend you know and love.

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If I knew anything about street artists, I would tell you who did this, but I love it.

 

First Step – Research

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My old treatment plan – bed and pain pills.

I’ve always been a proponent of learning. Since I was wee, I have loved reading and considered it power. My earliest dreams were to get out of my small town and experience more of the world, and my immediate answer was to educate myself so I could have the money to do so. Education and reading has always been my most valued tool. Which is why my inaction in helping myself, health wise, should have been puzzling.

So often doctors counsel us to not WEBMD ourselves. Don’t Dr. Google they say. However, what is a patient to do when doctors don’t listen, or maybe they do but don’t have the answers? I’m not saying Dr. Google is the most reliable source of information, but there are sights that service specific ailments, and are manned by reputable sources and there is the library.

A doctor will see us fifteen minutes every couple weeks IF we are lucky enough to have insurance. Even if they know what’s wrong with us, is that really enough time to tell us all of our options for treatment or even how to enact that treatment. I have spent more time with personal trainers, farmer’s market proprietors, and house cleaning people, and spent less money on all of those services. Is it sad that I found out more and had a longer conversation about where my peaches were grown from the farmer’s market proprietor than what it means to be diagnosed with PCOS from the proprietor of my healthcare? I’m not saying that my doctors are bad in any way. I have loved my general practitioners back in Boise and here in Philadelphia. They have my respect and I feel I have lucked out. Still, I feel like there is no such thing as comprehensive medical care. I am saying that the system is wrong and the only way to combat that is to educate myself.

Sadly it took me too much time to realize that. I have just taken what doctors have told me and done what they have asked and that is all. Total trust and reliance in the medical profession has been my go to for far too long. I have been given many diagnoses in my quest for pain relief: PCOS, endometriosis, adenomyosis, fibroids, and dysmenorrhea. (The last one I believe is just a bullshit excuse not to do anything about a woman’s pain.) I was told the doctors recommended course of treatment and I followed it, but only their course of treatment for about ten years. I listened patiently and did what I was told. There are many social cues that tell us to follow what the doctor says. I guess that is appropriate because of all their education they deserve respect. However, there should have been a point in each of those diagnoses’ which as a patient I took responsibility to be more educated and this year I have. Let me say, it has made me feel better.

In my defense, it has been hard before now. I am extremely lucky in that my husband is supporting me right now. My number one responsibility is to get rid of this pain. While it is still not easy to read books, scout message boards and research web sites while either on pain pills or in massive pain, it is better than while working forty or more hours a week. However, I am working toward a better life none the less. I have been researching so much my physical therapist may just learn a few things from me.

My plan is to become so informed on all my diagnoses’ that there isn’t any course of treatment I don’t know about whether western medicine, eastern medicine or natural remedy. This has been the best thing I have done to make me feel as if I have power. My library card, my laptop and I are a powerful trio that has provided me with many answers.

My newest diagnosis is that I have a too tight pelvic floor. This is a fairly new field- pelvic physical therapy. I was told by a gynecologist here in Philadelphia that it has only been available in maybe the past five years. So when I feel pissed off that no one realized this was my problem until now, I must understand the science wasn’t there. I have read a couple of books, countless web sites, and watched many hip opening, hip stretching videos. I have met with my physical therapist twice who has examined me twice. My therapist gave me one exercise to do every two hours. So far this is what she asked me to work on. I have done that but I am also doing about twelve more stretches as part of my everyday yoga routine. I am keeping track of my diet and how it makes me feel. I am reading up on nutrition and supplements for IBS which is related to the pain. I am also trying to work on my related fibromyalgia and am looking into getting a hysterectomy to take care of my “dysmenorrhea” AKA painful periods because I believe they caused this problem in the first place. I am building my own comprehensive care.

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My new treatment plan- laptop, Nook, yoga mat and notes. 

This week is the first week in years I have gone an entire week without one single Aleve or any other pain pill. It is the first week this year I haven’t needed something heavier than that. I have hope. If all my research has done is give me the fallacy of control, then right now that is enough. More than that, it has definitively made it so that I can make more informed decisions when the doctors give me a choice. While I have to understand it is because of my new cutting edge pain expert gynecologist and this physical therapy, I also feel a good part of the solution has been my determination and my library card. I’m in charge now.