Get It Together Doctors

20160814_182253
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

And So It Goes…

20170210_201529
Isn’t he cute? He is super supportive and the reason I can take days off to recover in my pajamas. 

I am admonishing myself today because I am in my special soft pajamas and my softest sweater because I over did it yesterday. I did my yoga, my writing, and then I cleaned the kitchen and deep cleaned the refrigerator. I took out three trash bags from all the cleaning I did yesterday. I also washed the bathroom floor by hand because my hair just doesn’t come up with a mop. I was extremely excited when husband got home, but by the time we went to bed I could not move my head without groaning.

I am extremely lucky because my amazingly patient husband gave me a massage to loosen me up enough to go to sleep, but then this morning I woke up in full -just got hit by a mac truck- fibro mode. If you don’t have fibromyalgia I will remind you that it feels like when you have the flu, but you don’t vomit. You are sore all over, nauseous, and swollen in places. So basically it is like you have the flu but also got beat up last night. It’s a wonderful way to start the day, let me tell you.

So today I am sitting here watching Monday’s Dancing with the Stars and the fog in my head is coming and going. Right now, in a moment of mental clarity, I am wondering how long it will be before I learn my lesson. I want to manage my energy better. I feel like I make progress and then get excited and do too much. I get a little encouragement, and say I GOT THIS!!! I got this all the way to the couch. Dang it to hell. It is so frustrating. Now I have lost a whole day. I have lost an entire day to sitting around without any progress. I know I shouldn’t let it, but it pisses me off and makes me feel guilty. I know it shouldn’t but I keep going over where I went wrong and how I could have broken up tasks. Maybe I could have eaten better. Would that have made a difference? Should I have split up cleaning the fridge? Two shelves one day, the rest another? These are the questions I feel like all fibro people ask, am I wrong?

Managing your activities can be tedious. These are base activities that most humans have to do: cook, clean, walk, fold laundry. I have to dose them out like medicine. Too much medicine and I crash. Today is crash day.

Will I ever get it down? Will I ever learn? I doubt it. My mom has had fibromyalgia for years. At least once a month she is telling me about something she over did. This week she mowed the lawn and the next day her back hurt and she was out of commission. She hasn’t learned.

Also, hopefully my baseline for what I can do will improve if I keep working at it. I have to keep chipping at that line that I am not supposed to cross. I have to keep trying to move it forward. So, I guess that I will be having more days like this. By that logic, perhaps these days aren’t that bad.

I keep trying over and over to be more capable. I keep trying to push the limits of my abilities. That is a good thing. So maybe it was stupid to do too much too fast, to be excited when I feel good, and to fall for it again. This excitement (like look what I can do!) is contagious and insatiable sometimes. I want to feel normal, that is natural. I want to reach out to all those people with fibromyalgia and tell them not to feel bad when you make a mistake like this.

Fibromyalgia should be called baby steps. (Please excuse the What about Bob reference Bill Murray.) Baby steps to a clean kitchen, baby steps to a clean bathroom, baby steps to a vacuumed floor and baby steps to a rewarding life. I should make it a mantra. I should add it to my morning meditations so that I don’t forget.

It can be hard to always live a mindful life down to the most minute activity, but that is the new regime with fibromyalgia. I will always struggle with being guilty because I’ve done too much. As a fat person, I’ve always felt guilty for not doing enough, for not loving exercise. Now in my forties I am finally loving exercise and I have to put a cap on it. I struggle not to feel guilty at all anymore because it helps no one. If you have fibro or some other chronic illness, or even if you don’t – how do you stop the guilt train? It has to stop. It helps no one. How do you stop the guilt train? We have to put an end to it for our collective health. We have to band together and be encouraging to ourselves. Not just because guilt, shame, and stress can cause not just mental anguish but physical pain in fibromyalgia. I don’t think those things are good for any human.

In addendum: My husband read this before posting. He said that it would probably help for caregivers and spouses to read this. He said it helped understand better. I know if you have fibro you understand this push and pull with your abilities, but maybe your partners don’t. My husband is truly the greatest husband in all of the world. He dotes on my like I am his “precious.” So, if he is still figuring it out then I am guessing education is needed for more partners in this world. I hope this that this essay helps, but I would also recommend: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

Can Fibro be funny?

20170131_135111
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.

20170209_140657
If I knew anything about street artists, I would tell you who did this, but I love it.

 

The Best I Can Do

physical-therapy
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.”

DSC_0218
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.

Chubby Yogi?

yoga blog2
Very comfortable. This my morning practice I do when I am getting ready to go to work, that is why I am in my jeans.

 

My mother was joking about when I was little saying, “You were such a little Hellion. You were a difficult child, running and talking 23 hours a day, but it always amazed me when Mr. Rogers was on, you were quiet, enwrapped in the program. I mean not a word was spoken when that man came on the TV.” Mr. Rodgers with his calm, quiet, dulcet voice, pastel sweaters and serene demeanor, was so unusual to me. I grew up in a full, loud and boisterous house. My life was and still is full of noise. I am a loud person, from my booming voice to my full, deep, whole hearted laugh. When words come to my mind I speak them right away. My siblings are pretty similar.

I guess this is why I am totally enamored and fascinated with calm, quiet people. I have always whether consciously or unconsciously sought them out. I can’t handle not knowing what is in their brains and why they don’t feel the need to speak all those locked up thoughts. It’s like knock, knock, knock….what is in there? My Dad used to say, “It’s one thing to be stupid, it is another to open your mouth and let people know you’re stupid.” I guess maybe that is another reason I am lured to quiet people, I believe them to be wise.

I am pretty proud of my downward dog, even though it could be better.
I am pretty proud of my downward dog, even though it could be better.

The biggest reason I think is that yen yang thing. The whole attraction to what you haven’t mastered. My mind is in constant motion, thinking of several things at once. Most of it seems to come out of my fingers on the keyboard (a thing that has saved many relationships,) or out of my mouth. I fidget, squirm, and rarely sit still. My husband used to say to me, “Can’t you just sit and do nothing??!!!” While the invention of the tablet allows me to do that because I can read and watch TV at the same time, and I have also learned that quiet people don’t always have pearls of wisdom hiding in there…I still long for stillness and quiet that eludes me.

If I told you that you would probably refer me to a counselor, yoga, or meditation, right? It says something about me that I have seen counselors, but never in a million years thought about yoga or meditation. Ol’ Doc Baxter says with my fibromyalgia I have to stretch. Google says, “Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety.” My mom and grandma both had it. Growing up I knew; Fibromyalgia equaled pain you can never get rid of. Knowing the pain Mom went through I have already researched this disease before Dr. Baxter told me I had it. I kept “helpfully” sharing what I learned saying Mom try this, and try that. Yeah, I am that kind of friend, the fixer. Mom isn’t much for trying stuff, so now; I am going back on all that literature, and the number one suggestion: yoga and meditation. Oh, okay, so I guess I will try it.

Love a good hip stretch
Love a good hip stretch

I LOVE IT!!!! I normally hate to sweat, but for some reason I don’t really notice when I am doing yoga. My husband and I have been doing about twenty minutes in the morning and the evening. Last night I sweated a lot. With a concentration on breathing, position of your body, and balance: it is such a challenge for me that it quiets my mind. Even small stretches and poses are meant to be done in reverence and thoughtful breathing. I have found it to be so relaxing and calm, and the biggest benefit is I have noticed after just a few weeks practice I have much less pain than before.

Maybe this will lead me to be the quiet, introspective, wise person I have always wanted to be? That may be too much to ask, but at least I am on the road to far less pain.

 

 

 

Come to my Pity Party

wedding week 158There are so many people in pain in my life, it feels selfish and morally weak to talk about my pain. I have a Facebook friend who is in constant pain, and my mom has fibromyalgia, in pain almost every day. These are only two examples of the many people who have it worse than I do. I think quantifying how much pain a person is in, it sort of an odd conversation, but I know I am not the only one who thinks this way. It is the same with emotional pain. For instance, I would never think of going to talk to my best friend about a small argument I had with my husband when she was crying over a break up. That’s just mean. I wouldn’t blame her if she looked at me like, “REALLY? THIS SHIT?”
Being a bystander to chronic pain, I know how helpless it feels when a loved one is going through it. My mother has so much pain it’s unbelievable, and Mom’s a tough woman so I know she isn’t just complaining. To be honest she just doesn’t complain enough probably. After so long complaining seems fruitless I am sure. I used to try to help. Those with chronic pain will giggle at that. It is like trying to tell a fat person how to lose weight. No one has researched how to lose weight more than a fat person. I can account for that. It is the same for chronic pain. My buddy on Facebook goes to a new doctor it seems once a week. So while I am saying why don’t you try yoga, how bout acupuncture etc. my mom is just rolling her eyes. Finally she says to me, “I have tried these things. When I tell you about my pain, I just want you to listen, maybe say you are sorry I am going through this.”
Oh, hmmm. I don’t know how to be outwardly empathetic very well. I am…trying. I think I sort of sound like a recorded message sometimes but again I try. I much prefer to try to solve problems, but if there is no solving something the only thing I can do is submit. I think God is trying to teach me to submit to things that are out of my control. I am not a fast learner this way.
When it comes to my pain, I am lucky in that it is only about a week every couple of months as my medicine wears off and I wait until my insurance deems me worthy of another dose. I lay around taking my Aleve, in the fetal position with a heating pad on my shoulders, or legs or whatever part of my body hurts the most and getting nothing done except a lot of diarrhea. I think that is what pisses me off the most. I feel worthless. A week before my MONSTER PMS I was so productive. I wrote, edited, scrapbooked, exercised, and spent time with loved ones. One day I am feeling amazing, next day, don’t want to walk to the fucking bathroom. I have to slowly hobble to the bathroom.
There is nothing they can do. I have been to four doctors. My PCOS polycystic ovarian syndrome, isn’t going away unless I lose all this weight, and you know, the irony isn’t lost on me. I have a disease that requires me to lose weight, but makes it so that for weeks at a time I can barely walk. Just like Diabetes, you have trouble monitoring how much food is healthy for your body, so let me give you a disease where you have to monitor it more and more strictly. These may be the only questions I ask God when I meet him. Why is that logic so messed up?
My mom doesn’t complain enough. I want to complain for her. I want to go to doctors offices with her and be her advocate. I want someone to do something! I want someone to do something for my friend and for me. My mom still takes care of her family and sometimes even builds houses with my Uncle. If she can get through every day in pain, then I can get through a week every two months. I know I will live, and I will thrive. Sometimes I just need to bitch. Why do I feel so guilty about that?