Get It Together Doctors

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One of the bad days.

I have become a member of an online Facebook group for fibromyalgia sufferers. I started exploring the different avenues for support for people with fibro. We don’t have a support group in the Philadelphia area that I could find. I wanted to be around other people who know what I am going through. I was hoping that I would feel less alone on those days that I am in pain and can’t leave the house. I also was hoping to learn what those women and men who deal with fibromyalgia on a day to day basis did to ease their symptoms. I was looking for comraderie, sisters in arms, people fighting a fight together. That isn’t really what I found, yet.

Sometimes these chats seem like only people who are suffering together. They are encouraging, sympathetic, and lovely. We are all suffering. The thing about fibro is that we’d have a pretty pitiful march if we were going to battle. Most of us can’t walk very far at all. Most of us are in constant pain and feel nauseous and feverish. We feel like we are hung over AND have the flu. It’s not like we can usually muster up a rallying cry. It would come out like a sigh more likely. But I am still looking for a way to cope.

I’m not ready to be couch bound. I want to walk for hours-down streets I’ve never seen. I want to be able to fly without pain. I want to be able to do yoga for an hour without taking a two day break to recover, because Philly has free yoga on the pier. To do yoga by the water would be a dream.

I am not ready to give up on those dreams. I need to continually feel like I can do it. I need to know in my brain that it is possible for these things to happen someday-even if it is not true. I need to be able to strive for it. If I believed that it wasn’t possible I would probably curl up in a ball and give up. I desperately and deeply need the motivation.

I guess I am looking for someone to say this is working for me, you can too. Isn’t that such bullshit? No one is going to give me a get well quick story. This isn’t that kind of syndrome. Fibro is forever. I get that. They say that you can live with it. What exactly that looks like isn’t really clear. From the testimonies on so many fibro sites it seems dreary and hopeless. Most of my fibro sisters have spouses that don’t care enough to find out about their wives’ condition so they complain about their inability to perform tasks, their inevitable weight gain and they belittle the pain they’re in. Most of them have kids who are ungrateful, and employers that could care less. It is a sea of harshness in a world of people who should be treated with kid gloves. These people are in pain constantly, who still have to perform their lives, AND try to figure out how to medicate themselves.

Think about your mother. Everyone in the world who had a good mom, think about that mom. What if she had fibromyalgia. She would have never had time to figure out how to make her life easier. Most moms don’t have time to get their nails done or catch their own movie, less known go to physical therapy or read a book on fibromyalgia.  Fibromyalgia is predominantly a female syndrome so females are too busy building families and running the f*&Oing world to treat themselves to all the doctor’s appointments, or go to physical therapy twice a week, or a trigger therapy masseuse. I am extremely lucky; my partner is the most remarkable partner in the world. He is seriously amazing. Most women don’t have my privilege or my support.

I don’t work right now. It’s my turn to be at home because I worked while Brad went to school. So, I get to follow my dreams now. Part of that dream is to get healthy. I am working on that full time while also trying to get my writing going. It is unusual that any woman has the time I do to do the research, go to doctors and physical therapy, schedule workouts, meal plans, and supplements. Right now, I am extremely lucky for a fibromyalgia sufferer.

It is easy for me to have spunk. It is easier for me to get riled up, throw my fist in the air and say, “I will figure this out. I’m gonna live a good life!”

The big problem is that fibromyalgia has been around in some form since 1904 according to a government web site. They knew about it since then, but didn’t do an official study until 1981. The AMA didn’t recognize it until 1987. Do you think that it is a coincidence it took so long to get acknowledged on a disease that mostly affects women?

So, the medical community hasn’t done that great for these women. Most doctors don’t really give these patients a lot of options. I’ve been going to the doctors and physical therapists for over a year and it wasn’t until I picked up a book by Dr. Ginerva Liptan called The Fibromanual that I found out some information that is really helping me. No one else has explained the disease to me so clearly or why I need to do the things I do. Of course, The Fibromanual was written by a woman who also has fibromyalgia. That is how we get things done, right?

I’ve only been following her advice for two weeks and already I feel a little better. See these chats I have been observing on Facebook and other support group web sites only make me mad. It is another way that women are neglected in this society. I can forgive their partners for not knowing what fibromyalgia is, because I am still figuring it out and I am a dogged opponent even without a medical degree. I can forgive kids for being little ungrateful shits, because that’s what they are supposed to be, but I can not forgive doctors who get paid more than most of the population for not taking enough time to truly give these women relief. I recommend every doctor who has a general practice to read The Fibromanual and other books. Give the women who are sixty percent of the work force, and seventy percent of the home care, some attention please. Give them a fighting chance to get out of bed without pain.

To all my fellow sufferers,

I know your life is busy. I know sometimes this seems hopeless. It sucks. I feel it everyday. There is hope. Read up as much as you can and press your doctor to read up too. It is there job. Don’t let them get away with not knowing how to help you. That sucks. My first book recommendation is The Fibromanual. It even has a section you can hand your doctor. Know your body, and know that there is some relief out there. Try if you can to prioritize your health for a little while so that you can get a system down that will provide you with happy pain free days. Get help. The people that love you will realize you are worth the time you need to figure it out.

Danielle

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.

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!

I’m Back, From Outer Space

It has been a while since I have written. I am so sorry but I have a very good excuse. My life has turned upside down and across the country. Two very big things have happened in my life. First of all, because I went a year without a cigarette my doctor let me off a certain medication. This medication was causing me pain, and the withdrawal of that medication was even worse and went on for about a month. Secondly, right about the time I was feeling better my husband got a new job and we were off to Philadelphia. We had less than a month’s notice and had to pack, find a place, drive the u-haul cross country, quit my job, and move into the new place. Right now I am surrounded by boxes in my living room. It is sort of like living in a storage locker, with a kitchen and TV. We have moved from a three bedroom fourteen hundred square feet apartment in Boise, Idaho to a one bedroom, seven hundred and fifty square feet apartment in Philadelphia. The experience has been amazingly mind blowing and also exhausting.

My mountain of boxes
My mountain of boxes

My husband and I have been stressed and on high alert for over three months and I know it has taken its toll on our diet and our bodies. The month that I was in pain I spent most of it on the couch. I was still in pain while packing and trying to get rid of most of our furniture. It is hard to sell all your furniture in a couple weeks. We even had trouble trying to give items away. It was two weeks of packing and moving and trying to spend as much time with family and friends as possible. Quality time was impacted by the urge to get things done. While I tried to be mindful in the presence of my friends and family the “to do list” was always in the back of my mind and I am only just realizing that now. There were so many people I missed and so many people I just didn’t get to relate how much I love them.

The day of the move we were so unorganized and stressed. That night when we got to our first hotel with our u-haul packed with our things, I realized I had been wearing my casual dress inside out the entire day. After taking a long hot bath in the gigantic tub Brad surprised me with, I sort of scared him because I was so tired I was speaking gobble-dy gook and had to be put to bed. After two more exhausting days of driving we took a break at my parent’s house in Oklahoma. We had decided to visit for two reasons. I hadn’t seen them in a long while and I might not in a while. Also, Mom has been pretty upset we haven’t been home for Thanksgiving in about ten years. It might as well have been a spa. It was a refuge in the middle of the country. We slept a lot and ate my Momma’s delicious food and talked and joked with my parents and siblings. Also, I got to play with my nephew and what could someday be my nephew. It was so nice and restorative we were sad to have to leave after three days. We drove three more days until we got to Philly. Then after a night in the hotel I watched my belongings be loaded onto a busy city street into a hole in the wall between two dumpsters. That is where the service elevator was. I even watched a guy pee next to one of the dumpsters. After all my belongings were safely into my new place, Brad and I set up the air bed and then went to buy a new mattress on Black Friday no less. After a wonderful dinner at the pizza place across the street, we drifted off to a deep sleep. That was six days ago.

The hole we moved our stuff into
The hole we moved our stuff into

Today I am taking a strongly recommended day off. I have been moving boxes and furniture and sleeping on an air mattress which has affected my back. Last night my husband begged me not to do anything today because I could barely walk. I really wanted to get this apartment into shape because right now it feels like living in a storage locker. Being in a huge city without any friends or family I guess I am just struggling to make a home. I need one place to feel normal. However, I am taking a break for my husband’s peace of mind to write and reflect on what we have been through.

All of this leads me to the good news. In a big city like this we are walking a lot more. We gave up our car since it costs over two hundred dollars to park it here. We are going to be eating in more since I am not working and it is so expensive to eat out. I am hoping that is going to bode well for our health. Today I am taking it easy and am going to do some yoga. With a little de-stressing, I think Philly will become home.

Please Excuse Me While I Write a Love Letter to my Husband

 

This is us on our honeymoon.
This is us on our honeymoon.

The past few days have been a respite from the pain I have been going through. I even made a lovely breakfast for my husband this weekend. I swam and spent time with family and friends. I was limber and energetic. This lasted about four days. This morning, when the alarm went off it felt like I had been boxing all night instead of sleeping. My joints were frozen in place, and my muscles were in pain. I was supposed to go swimming but when the alarm went off, I told my Brad, please I think my body needs the hour sleep more than the swimming. (I don’t know if that is true or not) He agreed, but he was awake already so he left me, and then came back in an hour to massage me awake. Yes, you read that right. Lying down next to me in bed, he very tenderly massaged my shoulders, my back, and even my hands that were stiff and unable to move. He patiently listened to my groans and whispered protests, and softly told me he loved me. I finally was loose enough to move myself into the bathtub so that I could soak my muscles in the hot water. As I bathed and my body loosened I said to myself, do better, be better, because I want to get better not just for me but for him.

In my life, I have been surrounded by people who have chronic pain, people I love greatly and I have been at a loss on how to be of comfort, until now. My youth minister when I was in high school said something that has stayed with me all these years, “Love is not a feeling, it is a commitment.” This is so true. I have been trying to learn how to express my empathy and my concern for my loved ones, Brad has taught me how. It isn’t the words. It isn’t even the tone, it is the consistent presence. It is the habitual exchange of care and warmth. Brad wakes me up everyday gently, and he is never impatient because he knows mornings are hard. He understands when I need to spend my break refueling and calming down instead of calling him. He has been so good natured about the eating no carbs when his favorite food is pizza, he got a gym membership with me even though he hates being around other humans (especially the athletic types), he went to said gym in his pajama pants because he didn’t own any athletic ones, he eats Kale, makes sure I remember my medication and vitamins, and rubs my feet when the neuropathy hits them as it so often does. He holds my hand when I am on the floor crying.

So handsome
So handsome

It isn’t just what he does; it is the consistency with which he does it. A man who is usually only patient with computers is infinitely patient with me and my pain. He is a miracle in my life and I hope it never ends. He loves me unconditionally and because of that I feel that I need to step up and be better for him. I need to work through the pain, show him at every opportunity that I am okay and that he is the most amazing wonderful husband in the world. So not only does he comfort me this way, he engages me and inspires me to get better, and handle things better for him.

 

When he laughs, he lights up my heart. It is the truth. I promise.
When he laughs, he lights up my heart. It is the truth. I promise.

Plagued with Self Doubt

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My Momma praying for me

Self doubt is my worst enemy. I seem like a very confident strong woman. For the most part I am but there are days and those days sometimes turn into weeks in which I don’t believe in myself. Keep in mind that I am an Oklahoman. I am one of the proud people of the plains who believe that with enough elbow grease you can get anything done. If you don’t get it done, you must not have wanted it bad enough. I do to a point believe that. I do believe that the fact I am not at my goal weight is because I didn’t want it early enough or have enough gumption to get the ball rolling. I also believe I haven’t had enough passion to keep it rolling. I know that seems simplistic. There are so many factors in achieving a goal: environment, personal health, and support etc. However, isn’t desire the most important part?

I would say desire, confidence, and hope. I mean these are the only things that I can bring to the situation, no matter the goal. Want and confidence I guess factor into hope. I feel like hope makes the time go faster when you are working on something. Hope makes the minutes on the elliptical machine speed by, and hope for a better future makes toiling away listening to a customer screaming at me now more pleasant or I at least more tolerable.

When I doubt myself, it is the coldest place in my heart. It’s like I have no confidence, and therefore no hope, except for prayer. My momma says, “Give it to God.” Now she says that, but she used to say, “Got helps those who help themselves.” I mean I can pray all the day long while eating pizza and my goal of losing weight will still go out the window. I do pray for strength, but I think my mother’s first thought was the correct one. I have to also help myself.

I have to believe that God gave me the strength and the fortitude to accomplish my goals. So where does that come from. I know that some days I feel it, but sometimes I just don’t. Inner strength seems to come and go, but I don’t know what causes it to go. More importantly, it seems so hard to dig myself out. Not only that but it seems like I store self doubt in my closet and when I pull out one box, all the other boxes come out and clobber me. When I am knocked out under the boxes and boxes of doubt, I think, I can’t do anything right. What’s the point? Why apply myself with anything if I always fail? How do I stop this thinking? How do I slowly pick box after box off the floor and clean them out and return them to the closet. Because by the time I recognize it is happening it is always to the point where I am down there on the floor.

Well, there is prayer. I ask God for strength and to help me get back my gumption. The second thing that I usually do is try to do something small I know I am good at. My go to move is to make a dinner I know I cook well. I personally believe I make the best chicken fried steak, mashed potatoes and gravy in the upper northwest. The practice of making this meal makes me feel capable and smart. I know that too seems simple a task but sometimes I have to go back to step one. Okay I can do this. Not only is this meal special in that I make it very delicious. It is the meal that most reminds me of and makes me proud of my home. Don’t get me wrong, if I could make a decent pie that is what I would do. Pies are also what make me proud of the Midwest. I can’t do that, but I make a mean gravy. It is not good for my waist line but boy is making that meal good for my soul. I feel competent, I get compliments, and I am transported home. Then I can move onto bigger things like getting onto that elliptical again, not eating after a certain time of night, or editing that book I have been working on. I have to go back to walking before I can run.

Daydream Believer

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Husband, thinking of employment strategies?

My heart has been a little broken lately. Husband and I are on the precipice of major change. As I have talked about, he just graduated from college and is looking for work all over the place. Looking for work at this point in time is frustrating to say the least. Remember when you wanted a job and the way you’d get it is by stalking the management, and explaining how wonderful you were. Now it’s a numbers game. You have to put all the buzz words in your resume so the computer will pick you and then your one piece of paper full of skills has to impress a human before you even get an interview. It isn’t personable anymore and even more so, no one seems to want someone right out of college.

I mean I know my husband is the smartest person I have ever met, but these people don’t. So much rejection can get to you. Yes, you can put it in perspective by saying they don’t know you, but feelings don’t have perspective.

Husband doesn’t deal with complex feelings very well anyways.

While our relationship is amazing we’ve been feeling the strain of it all. So much focus on his career makes me think about mine and not just because when he has his new job, I get to quit mine. I have dreams that I feel like I am failing.

Being the daughter of a 70’s teen, I was excitedly told from the beginning I could do anything I wanted. Finally for women the possibilities were endless. This is true, but then there are issues like what do you do when you can do anything? Then there is the pressure – if you don’t do something spectacular you’ve let your momma and all of female kind down. Now, admittedly, most only expect you to do better than the generation before. I my case, I have a college degree and a good union job so I’ve made momma happy, contributing to the feminist agenda, not so much.

This argument doesn’t even speak to my dreams. I want to publish my writing, become healthy, be a psychologist, study sociology, on any given day get a degree in one of ten subjects, learn Italian and Spanish, and read every book in the entire world. I am a thirty-seven year old woman that still has so many dreams.

All the wasted evenings spent watching TV bring to mind many regrets. I should have been reading or learning in some way, or doing jumping jacks. These thoughts are so unproductive and stupid, but again some feelings aren’t rational, especially when they are roped into feelings of inadequacy over not being able to help a loved one. I feel helpless not being able to fix things. I can’t handle the pain of the people I love.

I am in the spiral. My insufficiency is overwhelming me right now. It is sort of debilitating. I actually hit the Ben and Jerry’s tonight.

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My brother Patrick and I. Isn’t he handsome? Sorry, he is taken

Then my brother called. It is so nice to talk to someone who understands me so well. I guess my overachieving dreams aren’t just because of the pressures of being a woman. It might just be coming from the same woman, my momma. He and I were comparing our dreams and he so lovingly and hilariously put it in perspective. He said very seriously, “Don’t laugh. I am still upset I am never going to space.”

Now I am thinking if Patrick can live with the disappointment of never being an astronaut I can live with not ever studying marine life or microbiology (two of the possible degrees I have wanted.)

In an article in Ladies Home Journal this month the accomplished Sally Field said, “I’m looking at myself in the mirror and asking, ‘Who do I want to be when I grow up.'” Now if someone of her caliber, accomplished, beautiful and smart, isn’t resting on her laurels, then I think I have a responsibility to do what I can. Maybe we all do. I don’t know about space, but maybe I can fit those jumping jacks in during commercials. Who am I kidding, I don’t watch commercials.

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My Mom, the dream weaver.