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.

 

Reaching for Stability Inside

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The sign at my new favorite coffee shop

 

In Boise I was surrounded by people who were more introspective than myself. I loved listening to them talk about their beliefs, convictions, rituals and practices. I grew up in the church. I believe in God with all of my being but I don’t practice my beliefs that much. I mean I pray. In the evenings I thank God for my loving husband, family, and friends. I then talk to him about what’s going on with me, like I would a friend. That is as far as I have gone in the past twenty years.

I am a Christian but I have been disillusioned with Christians lately and I think that has made me resistant to the rituals surrounding my faith, like going to church and listening to preaching. It’s been absent in my life for a long time. I think that I have been missing it without realizing how much.

Lately I have adopted some new spiritual practices that I have been finding comfort in and I believe have strengthened my belief in a loving God. I am protecting those parts of myself that I had given away to other goals. I have realized a need to pray deeper and to experience more calm and stability that a spiritual practice can provide. The interesting part is that most of the ways I am practicing, while also give glory to God, don’t come from the church or the bible. These are things anyone can do, and they could possibly help anyone feel more stable and grounded in these tenuous times.

I first learned about mindfulness from the book “Living Buddha, Living Christ” by Thich Nhat Hanh. The book was an interesting read because there are so many similarities between the Christian belief and Buddhism.  I recommend it to anyone because it is a good read and not too touchy feely. It is interesting. Of course, the western world is embracing mindfulness by the droves now. I have been submersing myself in it while doing yoga and meditating. I have been listening to my breath and trying not to think of anything else for at least thirty minutes a day. I have never been one to be mindful before. I am known for doing several things at once. I enjoy multitasking for the most part because my mind moves that fast naturally. I didn’t say it thought great things, just that I think fast. It is my gift. However, even cheetahs rest sometimes.

There are so many articles on the health benefits of meditation that I won’t talk about them here; They claim everything short of growing a new brain. I can only tell you what it does for me. It helps me to slow my body down. The connection between my body and my emotions is strong. So if I can calm my breath down. It moves throughout my body. Taking deep breaths involves using all of my thoughts and it really does translate to all my limbs. Seriously, try it for like three minutes. I know that I didn’t believe it, but it really does calm me down.

It also calms my mind because I focus on just my breath, and ignore everything else. If a new thought comes I just ignore it. I don’t think of nothing because that would drive me crazy. I haven’t gotten that good yet. I have just been concentrating on my breath, and this thing they talk about where you breathe through your limbs. I know, it sounds hanky right? It really works though. You take an inbreath and picture it going to your arm (I know that isn’t how biology works, but just picture it.) Then when you breath out, you imagine that arm relaxing. If you do that for your entire body. I promise you, you will be goo. Complete and utter blissful goo where ever you are. Sometimes I do it before bed, after I pray and I am telling you it is so relaxing I just fall asleep.

There are meditations on a free ap called insight timer. All of them are good but look for the ones that are described as a body scan to walk you through what I am talking about.

The other practice I am adding to my life is to use affirmations every morning. I’ve found it is really helping me with my life because I have been so down lately. I don’t know how it will work during my dark days because I haven’t had any since adopting this practice, but so far it is helping me to be more focused. Affirmations or Intentions can be anything but I have been using three so far.

  1. I will honor God with how I care for my body because it is the temple of the Holy Spirit. — That one is from 1 Corinthians 6:19. I like it because it motivates me to take care of my body and my mind. It reminds me that taking care of me is important enough to make a priority. I, like most women, usually put myself last on the list of to do’s for the day.
  2. I will have the courage and tenacity to create art — I have been doing this so I will be fierce in my writing. I think any kind of art takes courage because it is hard to put your ideas out there. I need to have more tenacity and not get discouraged when I get something wrong. So, this intention is important to me, to get me to the computer.
  3. I will strive to love actively and deeply — This one I believe is the most important because I want to constantly show the people I love how I feel. I want to fill my heart with love always and I cling to that right now, because there is so much hate out there. I will not let it infect me. I want to love even those who want to harm me and those I hold dear. The last part is the hardest. Even though I try to be loving, it is difficult not to harden my heart to the people who want to hurt people I care about. Because I know nothing gets accomplished by my heart going to the dark side, I decided I needed a daily reminder to keep my eye on my soul. I will have the courage to love deeply and I encourage everyone to use that one right now. If everyone woke up and put love first, boy wouldn’t this be a better world.

These are a couple of ways I am trying to keep my mind, body, and soul this year. I encourage anyone to try to find something that grounds you, if you haven’t found it already. I’ve learned that I can’t control politics, religion, or other humans, but I can control how I react to all that. So, these small things, setting myself on a path every morning, are helping me stay the course. I need to be reminded every day to live my life fully, mindfully, and with love. This is how I am going to ground myself and keep my head.

 

The Best I Can Do

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Making Physical Therapy fun: I wanted the fake people to look like Star Trek characters. Is that Captain Kirk at the bottom? Why yes it is! 

Mom exercises every day. She’d wake up hurting and get ready to do her exercises. I thought she was crazy for years. Who thinks, Oh, I am in pain, I think I’ll exercise. It goes against all the logic I’d ever known. When you’re sick you lay in bed, right?  I’d say, “If you hurt why are you doing exercise?”  She would reply, “I have to exercise this morning or it will hurt more later.”

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My Momma: my eternal fitness hero

I didn’t really understand what she meant until I too developed Fibromyalgia. Now I am amazed at her resolve. Seriously. That woman is made of steel. The first couple years of Fibro kicked my ass. Waking up in pain is a buzz kill. Your whole day can be tainted. Waking up with fibromyalgia is like someone beat you with a baseball bat the night before and then you drank a liter of rum. Every morning you are sore and hung over. Mom woke up in that fog every day strapped on an exercise bra and just got to work. I bitch and wine like nobody’s business.

It seems like a weird idea, right? Think about waking up with the flu and being told the cure is exercise. Um…yeah, wouldn’t you think that’s bullshit? No, you would retreat to bed and not wake up until it ended. The sick part is, it never ends. You will wake up every day with the flu, and the only way to have the rest of the day is to exercise through it. Then the next day, start all over again.

When Mom told me she had to exercise I thought she was crazy. I didn’t understand then, what I know now: with Fibromyalgia exercise is essential. I told the doctor that I felt like a piece of machinery that rusts when it sleeps or sits too long. If I don’t stretch and move my joints, then I am in pain all day. It’s like I am lubing my muscles and joints. Once I have done that, then I can move onto my day.

My physical therapist, Melinda Gross, said that with Fibromyalgia you have to challenge the body regularly with controlled “stressors” in the form of exercise because it increases the body’s tolerance. So I have to increase walking, yoga, chores, strengthening exercise because it increases my baseline threshold for pain and stress.

Did anyone else’s dad ever make that joke? You know the one after you’ve been complaining your head hurts, and Dad offers to step on your toe to make your head hurt less. Turns out, that’s kind of a thing.

In other words, I have to put my body through a small amount of pain so that I am not in greater pain later. Also, if I put my body through more pain then what I have built up then I am in serious pain for days. So, I have to measure my activity every day. Once I painted a hutch and for the next three days the couch was my best friend.

When I think about it too closely, I get angry that I didn’t figure this out sooner. It is also very hard not to be angry that I can’t just wake up and be fine like a normal person. I get depressed at my pained muscles and stiff joints. It is easier to stay in bed. It is easier not to go to my twice a week doctor’s appointments. It would be easier if I could just take some pills to make the pain easier and just dribble into my pillow.

I was not happy when that’s all I could do, but it didn’t require much strength of will or physical strength. It was easier, but I wasn’t happy. My loved ones deserve much better than that, and so do I.

When I think about just sitting and sulking on the couch or skipping my doctor’s appointments I think about my husband. I am lucky, because he is the most patient and loving man. He is there every day telling me it is okay I am in pain and it isn’t my fault. He is my strength when I don’t have any. He deserves to have a wife that feels good about herself. I concentrate on that love when I am trying to get up to start my day. I concentrate on the love that I feel for my family and my friends. I concentrate on the fact that I want to soak up moments with them. If I am in pain, I will just be thinking about the pain.

I’m not perfect every day. I still have days it takes me a while to pull my head out of my ass and get moving. I was lamenting the fact that it takes me almost an hour and a half of exercising and icing to get me to feel normal/good. I did an unofficial Facebook poll of my friends and some of them exercise two hours a day. These are people I assume don’t have fibromyalgia, or any of my other health problems. So, I am not alone. They too use exercise to feel like themselves. I just have a large cattle prod getting me to the yoga mat.

Sadly, some days it still isn’t enough, but I am getting there one yoga work out at a time.

Out of Mourning, a New Resolve

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I am sorry that this smile is gone.

My beautiful, young, full of life cousin just passed away in her sleep. Ashley was nine years younger than I am. She passed away at thirty-three due to complications with her ongoing lung disease. She will be missed by so many. I really admired her spirit and determination. See Ashley has had lung problems all her life. She spent so many days and nights in the hospital being watched over by her poor Mom and Dad who worried constantly. She was a slight little thing as a kid and grew into a rebellious youngster. All of us are rebellious at one point but when you have bad lungs smoking and drinking are even worse. Luckily this time was short. She pulled it out quickly and then focused on her health. Ashley died being a wife, a devoted step-mom who undeniably adored her charge, a spitfire (crazy smart opinionated women run in my family) and amazingly a weight lifter.

It would have been so easy for Ashley to ruminate on the fact that she was born with a set of defective lungs. She could have sulked and stayed in bed, but she rallied and built a full life for herself. Not only that but she built her body up. She worked out steadily and ate well. She built up a business. To see her do all that with the body she was given, makes me feel inspired to do the same.

The past two weeks I have been requiring myself to do yoga absolutely every day. You know that hashtag #yogaeverydamnday? I haven’t really understood that because I feel like it has a negative connotation and yoga has always been enjoyable to me. This past two weeks I have been understanding it. There are days when I have had to crawl to my yoga mat and start by laying on the floor to stretch lightly. I slowly loosen my creaky muscles until I can move without pain. Then I move on to stretches that require all my muscles. It has become a requirement for all of my days. If I don’t do it then I will be in pain all day.

I think that it would be easier sometimes to just stay in bed. I have spent many days this year in bed with the pain and I am sick of it. I hope the ritual I have adopted will keep my out of bed for the foreseeable future. I haven’t tested this theory during my dark days when Aunt Irma visits, but I guess we will see. My physical therapy is working and I am so happy about it.

I think this new resolve is coming from a place of remorse for how much I have let my body sort of fend for itself against my vices.

Perhaps I can take up her mantle of good health. Maybe someday I can be someone people look at and say Hey, she had all that pain but she still put her health first. I hope so. I just have to keep making that uncomfortable walk/crawl to the mat every morning. If I can build on that. I might be able to follow her example.

“You are…fat?”

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“You are…fat??” she said with trepidation. I replied, “Yes, yes I am,” as calmly as I could muster. This new student at my ESL class seemed to be thinking of the right words after she witnessed me taking my blood sugar. Following that horrifying moment, another student made me proud by knowing enough English to scold her, “We no say fat. We say unhealthy.” Right after I got distracted by other students asking questions about how to say something or other. I think it might have been intentional. My students are some of the most polite humans I have ever met. I don’t know this student at all because she was new. I don’t even remember her name, but I can bet she didn’t mean to insult me. I would wager she was actually concerned about me.

I am usually like Teflon when it comes to this stuff. I sizzle when it happens but then it slides right off. I usually bristle back at the asshole who thought he could comment on my health or most likely appearance, but this wasn’t an asshole. I have to say I ruminated on it all day, and four days later still thinking about it. I keep seeing her confused face, and hear her say it over and over, “You are…fat?”

I probably would have shrugged it off but I had a horrible health week. I found out I have kidney damage. My A1C was 6.5 which is barely diabetic but that puts me back in medicine territory. I told her I didn’t want to take meds because I am trying to do things more holistically and that is when the doctor told me I have kidney damage. That’s another phrase that’s been going around in my head, “KIDNEY DAMAGE.” She later called it “low grade kidney disease.”

So for those keeping score, I now have fibromyalgia, PCOS, fibroids, adenomyosis, pelvic inflammation, diabetes, and now KIDNEY DISEASE! I know she said low grade, but seriously kidney disease doesn’t sound good. I’ve been researching it and it isn’t. I can’t make this better. I can never make this better. I can’t heal my kidneys. The damage is done. This isn’t a car, it’s my body. It’s not like I lost that new car smell. I lost part of my kidney function. This is bullshit.

There are two reasons this could have happened to me – my high blood sugar, and my excessive Aleve use. Because of the pain, I have to take sometimes four Aleve a day. Now I have to stop all Aleve which so far has been the only thing keeping me sane during times of pain (other than yoga.) I also have to take some diabetic pills and I have to monitor my blood sugar closely again.

So basically I’ve damaged a part of my body, I can’t repair it, and it’s only going to get worse unless I seriously turn it around. Which should be so easy right? Since, I’ve done it before. Okay…so I haven’t done it ever. So this week has felt pretty hopeless.

After yoga yesterday I just thought. I can only do what I can do. Ya know?

Have you received bad health news in the past? How did you deal with it?

Inspiration Everywhere

This February’s Self had an article that had Olympic athletes passing on their inspirational habits. There were a few that seemed like they were speaking right to me. I’d like to talk about them one at a time. Here is the first:

“Step outside yourself. I pretend somebody else is telling me why she can’t work out, eat right, or get out of bed. If I can say, “That makes sense,” then I cut myself some slack. If I can’t, I get moving.” –Elana Meyers, bobsledder

First off, I would like to say it is awesome she even has those thoughts. We are talking about an Olympic bobsledder who has won the World Cup medal, and an Olympic bronze medal. In my mind I always figured those sort of women hopped out of bed excited to do all these things, or at the very least did them on auto pilot. I never in a million years thought they had to talk themselves into it. This makes me feel like my problems could almost be universal. That is a relief in a way. I am not a weak human, just a normal one.

Secondly, it is a good idea to step outside yourself and think how you would feel if someone else was using the logic you are trying to employ to get out of the work out, or healthy eating. I might try to employ that, but upon further thinking I think that I might always agree with myself. I am of the agreeable sort.

The truth of the matter is I guess I haven’t been able to talk myself into working out if I didn’t want to. I am not much of a self talker.  I think there is a stubborn streak throughout my family and possibly all who hail from the state of Oklahoma.

I will really have to put my mind to this and get really into it for it to work. I will have to visualize talking to a real friend or relative for this to work, maybe my sister. I can usually talk her into doing some wild and crazy stuff. Now, when I try to talk OTHER people into doing things I am a wizard. My friends are always asking why I didn’t become a lawyer because I am pushy.  So maybe this can work. I will try it and get back to you. You try it too and tell me how it works.