I’m Not Sorry…Anymore

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Plus, I can still bake cakes!

I still mourn over breakfast. I used to make elaborate breakfasts and invite family and friends over. I loved cooking early in the morning. It is a remarkable confidence boost to pull off a delicious breakfast. You have to time all the dishes so they are hot at the same time. You run back and forth with the flapjacks and coffee. It is a meal that I relate to showing love. Momma always makes a hearty breakfast. I come from a long line of people who work with their hands. Breakfast is a stick to your ribs type affair and Momma does it up. I used to too. Since I started getting fibro flares every morning, I wake up in severe pain. My feet and hands don’t want to move, and a lot of the time hubby has to massage them before I can walk or hold things in my hands. The rest of my body isn’t doing so well either, with the aching and stiff muscles and sometimes severe pain in my hips and shoulders. This really does not make me in the making breakfast mood.

My husband is the greatest in the entire world. He makes breakfast most of the time before going to work. For a while I felt intense shame, guilt and yes…mourning. I was sad I couldn’t entertain like I used too, I couldn’t show love like I used too. Luckily, husband isn’t here for my breakfasts. He loves me for my cuddles, my adoration, my conversation, and my wit. He loves me deeply and without breakfast. Every morning I was apologizing to him for not feeling well. He would say, “I know, but you are sick. I understand.”

There is only so many times you can wake up to feeling bad before depression sits in and you don’t want to do anything at all, all day. Also, saying you’re sorry over something you have no control over is also pretty debilitating. I say I am sorry for my body more times than I can count. I am sorry I am sick. I am sorry I didn’t clean today. I am sorry I am depressed. I am sorry I am emotional. I am sorry I don’t have enough energy to make breakfast. I am sorry I can’t walk there. I am sorry I can’t make that coffee date. I am sorry I can’t meet my volunteer commitment. I am sorry I can’t spend time or energy on this or that. Pain has no understanding of my schedule. Pain doesn’t care what I want and it sure as hell doesn’t care what anyone else wants.

So, I am not apologizing anymore. I’m done. I will say thank you, when my husband takes the reins on meals, when he does more than his share of chores, or applies his healing hands to my painful muscles. I will say thank you for understanding when my friend isn’t upset because I am going to miss a coffee date. I will say thank you when I have to beg off a call because the fibro fog has taken over and I just can’t deal. I will say thank you and value the people in my life who help me when I need it. I will continue to be a good friend and partner, but I will not…say…I am sorry…anymore.

I will not be sorry for my genetic makeup. I don’t believe anyone who has chronic pain, a disease or syndrome should. There is no cure. There are only treatments which slightly lessen my pain and even that seems random. I can’t fix it, you can’t fix it. Saying sorry makes me feel deficient, lacking. I don’t believe that anyone in my life would say that I am not a good friend or family member, even if I feel like it all the time. I am trying to break myself from feeling hopeless. I can’t continue to feel like I am inadequate.

To my friends and relatives: If you catch me feeling sorry for myself or saying sorry, call me on it. To my fellow fibro sufferers: You are enough. I hope you understand just being a human and friend is enough. You don’t have to bake the best cookies for your loved ones to love you. You don’t have to be at every event in their lives for them to care for you. You don’t have to show your love in the same ways you did before. The ones who truly love you, will still love you when you stop. Just find a new way to show love. Believe that you are worth being cared for when you need it, and taking a time out when you need. You are not alone.

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Also, my garlic bread is still the best in the world. Breakfast Smeakfast!!!!

Self-conscious about Selfcare

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I have learned something very important lately. There is a value in what some people might call “selfishness.” I don’t advocate loving yourself above the love of others. I would just advocate taking care of your mind and body so that you can help others more consistently and powerfully. I grew up in a Christian household in a bible belt state. There is a stigma against anything that could be considered “selfish” especially for women. Mothers are supposed to give up all for their families. This is an underlying rule. This is something ingrained in every woman. Women and especially mom’s sacrifice. They’re the ones who cook, clean, and the last ones to eat dinner. Last Thanksgiving, I was home I watched most of the mothers be the last ones to get dinner and then they stood around eating it because there were no more chairs left. Why is it always the women left standing? This is just one example of many I saw growing up that said being a mother/woman meant being selfless, wanting less than. It’s not just the Midwest, I’ve read that families where both parents work across the US women still do seventy percent of the house work. I don’t think it is just my Midwestern roots cleaning their way into heaven.

When I quit my job to move to Philly because husband got a new job, we decided that I would pursue my writing and try to build a career. Two things happened that made that a difficult venture. First, my health went wonky. The pain I had been dealing with got steadily worse, as documented on this blog. Second, I got too caught up in taking care of my house. That sounds silly doesn’t it, but it’s true. With fibromyalgia I only get so many “spoons” of energy to do things. I would get up make breakfast, and then clean something draining all my spoons and then have no energy to do anything else. It was ridiculous how long this went on. I would clean like a mad woman and inflame my fibro and then maybe be out of commission for a few days. I was getting less and less done. Sadly with fibro, I have had no choice but to be “selfish.”

My mom says the bible doesn’t advocate selfishness, but I venture that the bible doesn’t say anything about cleaning your house, doing laundry, or being the last one to eat Thanksgiving dinner. It does tell us that we should take care of our bodies like a temple because the holy spirit resides there (paraphrasing.) This has been my new goal, my new focus. It is hard, years of ingrained guilt is hard to buck but I am doing it.

I kept reading about women in the wellness industry who put their health first. There was a reoccurring theme on the website well+good.com where women explain their daily morning rituals. https://www.wellandgood.com/tag/my-morning-routine/   These women are yoga instructors, nutritionists, and healthcare gurus. They are also wives and mothers. I was always reading what they do every morning, their indulgent rituals, and feeling extremely jealous. They usually start their day with hot lemon water, yoga or some other exercise, cuddles and conversation. They also usually do something else indulgent like art, journaling, or hanging out in the park. It seemed to me they had a relaxing Saturday before their work day. All of these women make an insane amount of money, claim to feel good and satisfied every day. Those aren’t the only signs of success but I still couldn’t see how they were doing it. So, emboldened by these articles, I decided to put my health first.

Does that just mean exercising? Shouldn’t health also include my mind and soul? Instead of cleaning first thing in the morning, I am doing my yoga, meditation and prayer, and then I am writing. Afterwards I am getting what cleaning I can done before starting dinner. Even then, sometimes if I clean enough I am taking a little hot tea break mid-afternoon. By doing this, giving to my soul and mind, I am getting more done than ever before.  Another product of my Midwestern upbringing, I like being useful. When I accomplish things, it helps my self-esteem. This is probably one of the traits that makes me the proudest of my heritage. While my productivity really makes me feel good about my new plan, it’s not the only thing. I feel better. I am getting my yoga in, and my quiet time and my writing which is something that has always made me feel whole. I am doing that corny thing they always talk about: filling my cup before helping someone else. I am putting my oxygen mask on before putting one on anyone else.

You know who is happiest with my new plan? My husband. I am making dinner every night. The house is more consistently clean. I am in a good mood. I may actually make money on my writing someday if I can keep up with this consistency. This “selfishness” turns out not to be so selfish, and maybe it could pay off even further in the future.

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 Monster In My Pants

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After the tears I just had to get out of the house.

I’ve been thinking about freedom recently because of the new president, this town which is the birthplace of freedom, and my continual grasp for freedom. I don’t mean the rights that are in danger right now in this country: like free press, freedom of religion or gay marriage. I mean the freedom of movement. I am desperately clinging to my freedom to leave the house when I want.

I feel like I should explain what’s going on with me because I am not exactly clear on what’s wrong so I have refrained from writing too many specifics. Something is wrong in my crotch. They don’t know what it is. My gynecologist has said it isn’t a feminine problem, but the other two doctors I see aren’t so sure. Second and third opinions are forthcoming. What we know for sure is the fibroids aren’t causing this pain, and it’s not endometriosis. So we are clueless as to what is causing my pain. I have had relief but only when I am not premenstrual or menstrual or for two days after. This relief between my cycles comes from the physical therapy and yoga I am doing. Around my period though it is as if someone is stabbing me right above my hip. Add this to my hormone fluctuations and my fibromyalgia and life is really shit when Aunt Irma visits. I have been entertaining this pain for about five days so I hadn’t left my house until yesterday to physical therapy, and I didn’t want to go to that either because of the pain.

My lovely therapist tried to massage and move the pain away to no avail. The examination turned into a consultation with another therapist to sadly no answers. There was just too much poking. It really is too much. I am sore today from the movement and the examination. My physical therapist is amazing because she has brought so much relief. I believe she will find an answer for me, because she is that good. However, these exams are really embarrassing and tiring. It is almost like getting a pap smear once a week. I am emotionally exhausted too. I am tired of hoping that there will be an end to this pain, when none is coming.

After my exam I was so depressed that there still wasn’t an answer for the swelling and the pain. I sat on the metal chairs outside this building full of doctor’s offices watching people with wheel chairs get dropped off and picked up feeling sorry for myself. I was full-on sobbing and vaping. Like…seriously… I stopped when a particularly sad looking fellow limped by with a foot cast on and he was wearing a robe. His face was a stone. The look of despair in his eyes was shocking. When I saw that my messed up brain said Poor guy, I should tell him it will get better.

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Beauty sometimes makes it better

Yeah, you see the irony. I mean what would this man have said if I had told him it will get better while crying. I wiped my eyes and started to leave and then it was like an alarm went off in my head that said, “Don’t go home.” So I took off walking. I walked over to Penn campus to check out all the beautiful brick buildings. I sat in front of the Starbucks watching people until I started to realize that all these kids had potential. When that made me feel pity for myself, I got up and kept walking. I walked to the river and stood there for a while looking at the train station and the river feeling lucky for the first time that day. I took a picture to show my family. We play “Where is Aunt Danielle Today?!” They are in Enid, Oklahoma and I like to show them all the landmarks of Philadelphia. In turn, I get pics of my smiling nephew. I get the better end of the stick for sure.

I finally decided to go home then. I guess I just didn’t want to go home and cry. I was tired of being home. I waited at a mall food court until my husband got off work.

I think my new tactic is to stay out of my house as much as possible. I am a vibrant person. I need human interaction. When my first instinct is to be easy on my body, I need to rebel against that because my body and my mind needs movement and excitement.

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Can I make this my new desk?

I am at a coffee shop today. I am looking out the window in Old city watching people walk by. I figured if it worked yesterday maybe it would work today. I will just stay out of the house as much as possible. I want to build memories of this city. I want to declare and take advantage of my freedom even if it hurts. I am leaving the house even when I am in pain. I am done hiding my pain in the dark. If I have to sit for a while or wince openly then I guess people will just have to deal.

I will just stay out until I create a memory. Tonight I am meeting a friend for dinner. Let’s see how that goes.

 

 

 

Wrapping Revelry

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I love wrapping presents. Most of the people in my life don’t understand, and consider this task a rather fruitless or joyless task. My mom only does enough wrapping to disguise the gift and she even finds this tedious. My friends sourly say things like, “Oh, I’ve got to wrap presents tonight.” You can hear the trumpet blowing in the background sadly Wahhhh wahhhhhhhhhhhhhh.

I can’t wait to wrap my little parcels. As soon as I get the first purchase home, I clean off the table, turn on the Christmas music and arrange all my wrapping supplies. It is one of my favorite things to do all year. I used to have a plastic tub filled with wrapping paper, bows, tape, and scissors. I had to get rid of it in my new apartment and I miss it. However, I still buy enough for the current year and take my time making each package look pretty.

I love wrapping for many reasons. Some are selfish. I love looking at the shiny wrapped packages hanging around our house, like tiny promises of momentary joy. The colors reflected in tiny lights or flickering candlelight. It’s kind of like marketing for a movie. Those packages are a small preview of the shiny faces to come.

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I love wrapping because I feel a release in the process. For moments of time I am thinking of the person who I bought the gift. Do they like this color? Does this paper remind me of them? Santa Claus paper is always reserved for Mom. Blues are reserved for my sister. I try to have funny little cute images on my nephew paper. I even have slightly staid manly-ish paper for the men in my life. While wrapping I think about the person, memories and likes and dislikes and try to imagine how they will feel about the gift or the wrapping. For whole moments, I am outside of my mind and anything that stresses me. I am joyful with anticipation. It’s like a meditation. I picture the joy on their faces for just a little bit, hoping it takes them out of their worries for just a minute.

That’s the other thing I love. It is a beauty that will last only a little while. So much of artifice and art is meant to last a long time. Wrapping is meant to be torn apart. ­­­­­I love the idea of someone thinking Look how pretty that is and then ripping it to shreds. I love watching people tearing apart wrapping paper. That is so fun! I feel like small pleasures here and there are all we can really guarantee in life. To be lost in a little bit of time here or there. To be lost in something beautiful for a minute like the look on my sister’s face when she opens something surprising or lovely.

No one can count on the big stuff. Big moments don’t last very long and then you’re only reaching for the next one after that. We live in the small moments: Brad kissing me unexpectedly or tearing up when I am happy, my Grandma gushing when she is proud of me, my sister texting me to call her out of the blue, Mom confiding in me, or Caleb telling Grandma how he took lead on his school project.

I soak up all this happiness and marinate in it. If I don’t collect them. If I don’t pay honor to them, if I don’t hold these moments almost sacred, then they fly by without notice. I only remember the pain. Because sadly, pain is memorable on its own without me adding my notice. Like my little offerings to my family, I think God or life offers us small presents in moments of love or beauty and the key to true happiness is to hold them in your mind dearly and most precious.

Are there any small rituals surrounding this holiday time that you adore as much as I do wrapping?

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The next morning the candlelight flickers off the wrapping paper to illuminate my yoga mat!

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.