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Product Review: Quell

December 31, 2016 By Jenny Ryan 6 Comments

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “

Over the course of the past year, I’ve had the opportunity to test out a variety of different products aimed at helping us chronic pain patients find some pain relief. I’ve tried lotions and ointments that focus on easing the physical symptoms. I’ve tested products designed to soothe the emotional aspects of living with daily pain, like teas and aromatherapy diffusers. I’ve read books whose goal is to help patients be as educated and empowered as possible as they advocate for their own best healthcare. And I’m grateful for the ways that each product complements and amps up all the tools I currently have in my pain relief kit.

In addition to all of these pieces, for the past couple of months I’ve been testing something quite different: a wearable, drug-free, pain-management device called Quell. From the website:

“Quell is wearable technology that uses intensive nerve stimulation to provide widespread pain relief. It is designed to be worn on the calf, regardless of where you are experiencing pain, and stimulates your nerves in a way that is powerful enough to trigger the release of your body’s natural pain blockers. Pain is blocked at the spinal cord, which helps you feel widespread relief from your pain, not just relief in a specific part of your body.”

I’ve undergone a number of semi-invasive procedures like epidurals and nerve ablations (nerve burns) that work on pain at the level of the spinal cord. They work for a few months, but they are expensive, temporary, and pretty hard on your system. I’ve also been prescribed medications that attempt to interfere with your brain’s ability to sense pain. But their results vary, and they come with a number of unpleasant side effects. Quell is completely different.

Of course, as with everything I review here, I add the caveat that it is not a magic bullet, I still have pain even when I use it, and everyone’s results will vary. But my Quell unit has provided me with a level of pain relief I’ve not found anywhere else.

I received my unit back in September, when we were packing up 22 years of living in Georgia to move back to North Carolina, and I pretty much gave it an introductory baptism by fire. Because despite 4 years of not driving long distances on the highway, this time I had no choice; we had to get both cars to NC, so I had to drive one of them. This meant I couldn’t take any pain medicine until late in the day when we’d gotten to whatever hotel we were staying at that night. And of course my pain was fairly jacked up thanks to all the physical labor and emotional stress caused by the move.

So I put on my Quell that first morning and drove for about 4 hours. And when I got to the hotel I was so surprised; I still had pain, of course, but nowhere near the fiery, debilitating level of pain I was expecting given my current life circumstances. I was kind of stunned.

It would be nice if I could give you some hard and fast numbers, I know, a consistent, specific percentage of the decrease in my experience of  pain. But because my amount of pain is fluid from one moment to the next, and my perception of my pain is personal and subjective, I can’t do that. But I can tell you that I almost always have a noticeable decrease in pain when I wear it, unless I’m having one of those flare-ups where nothing helps.

But what I can do is tell you that if you have the opportunity to test a Quell device, you definitely should.

Visit their website for more detailed product information.

Filed Under: CFG Shares Some Cool Stuff

Product Review: Organic Aromas Essential Oil Diffuser

November 23, 2016 By Jenny Ryan Leave a Comment

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “

For the past few months I have had the opportunity to try out one of the Essential Oil Diffusers created by Organic Aromas. They offer a wide range of beautifully crafted products to choose from, and I am using the  “Raindrop” version of the diffuser.

Raindrop-Light-Essential-Oil-DIffuser-by-Organic-Aromas_large

 

The first thing I love about my diffuser is just the way it looks. It has a beautiful, handcrafted wooden base that is smooth, easy to handle, and feels really good in your hand, and a custom-blown glass reservoir that holds the essential oil.  And being the child of the ’70s, lava-lamp-fan that I am, I love the little LED light at the intersection of the base and the reservoir because it changes colors as the oil is drawn up and out into the atmosphere. So it’s pleasing to both your eyes and your sense of touch.

I also appreciate the fact that it is a self-contained system, and sturdily built. All the different pieces fit together snugly, and the shape and size of the wooden base make it very stable. I don’t have to keep an eye on it all the time when I’m using it, and I feel safe if I have to leave it unattended in my office for a minute or two and attend to something in another part of the house.

The main attraction of the diffuser is the way in which it functions, the process by which it emits the essential oils into the atmosphere around it. It does not use heat in its process, nor does it use water. It’s worlds away from the only other type of diffuser I’ve used, which is a candle diffuser. I was always afraid that the candle would fall out of the bottom, or that the glass tray would fall off of the base. Plus, I could never get the right ratio of water to essential oil, so I either ended up with no aroma at all, or way too much aroma.

Instead,the Organic Aromas Diffusers work according to the Bernoulli principle, which Mr. Cranky Fibro Girl explained to me in this way:

the movement of air through a small opening creates a difference in pressure.  This pressure difference causes a vacuum to pull a stream of the oil into the airflow and then out into the room.

I have to say that my favorite thing about my Raindrop diffuser is what they refer to as “the volume knob”. You can turn it almost 360 degrees, which means that, one, you have a large range of options for the amount of fragrance you want around you, and two, you can fine-tune your “scent preference” to a pretty high degree.  As Mr. CFG would say, the amount of oil diffused is proportional to the speed of the air, so turning up the airflow turns up the aroma.

So far, I’ve only experimented with the complimentary oil included with my diffuser, but I’m looking forward to trying out a lot more of my favorite scents.

 

 

 

 

 

Filed Under: CFG Shares Some Cool Stuff

Product Review: The Patient’s Playbook by Leslie Michelson

October 18, 2016 By Jenny Ryan Leave a Comment

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

If you’re like me, you’ve read a lot of different things over the course of your illness: leaflets and patient handouts from your doctor(s); websites and online articles; and of course, books. These days we have unprecedented access to pretty much all the information we could ever hope to find, and that’s wonderful in so many ways, especially for people like me who are frequently stuck at home due to chronic pain and illness. But the downside to living in The Information Age is that it doesn’t take much to drown in The Information Sea. The Patient’s Playbook, by Leslie Michelson, offers a knowledgeable, reassuring guide to help patients and their caregivers navigate the frequently overwhelming waters of our health care system.

The book is divided into three main sections. The first section lays out the steps a person can take to become more proactive about their own healthcare right now, before any serious health crisis occurs. The remaining two sections describe the steps to take and the resources to explore when you’ve facing a serious illness and need to find the best specialists and treatments for your situation.

This book found its way to me at a very opportune time, as my husband and I have just moved to a new state and I need to find a brand new medical support team. With a few exceptions I’ve always been fortunate to have had good medical care in the past, but I did find my doctors in a very haphazard way, just adding a new doctor to the mix every time another health crisis popped up. I never had any one physician coordinating my care. But now I have an opportunity to start fresh when it comes to my healthcare, and I’m hoping that I can use the tools described in The Patient’s Playbook to help me learn how to become more skilled in putting together my medical team.

I will confess that I did feel overloaded at times while reading this book. There is just SO much information in it that at times it triggered the same kind of overwhelm it hopes to prevent. If you’re in a position to be reading this while you’re at your-version-of-healthy, I definitely recommend consuming the information in small doses. I’m currently working on one-third of Step Three: obtaining copies of all my medical records. But little steps make a difference; before reading this book, not only did it never occur to me that I could request copies of my records for myself, it never occurred to me that I should. Now I know differently.

Another things that bugged me about the book was the kind of stories the author told to illustrate his points. It’s not surprising that he includes many stories about people who suffered through years of bad care and misdiagnoses before finally turning to the strategies laid out in the book, which led the patient to the perfect doctor, who found the perfect clue/piece of information, which led to the perfect treatment, that led to a major recovery, if not total cure. I don’t doubt any of the stories, and they’re certainly dramatic. But there aren’t any stories about patients like me, who do everything we humanly can to manage our conditions but never find a magic cure. I had to catch myself a lot while I was reading the book because I’d frequently start mentally and emotionally flogging myself or telling myself I was a failure because I haven’t yet figured out how not to be sick. Or I’d start blaming myself for my illness.

All in all, there are many helpful things I’m taking away from the book. Like learning how to treat myself as someone who deserves really good medical care. And getting better at advocating for myself. But I’m also following the “take what works, leave the rest” rule; there are things I know I’m never going to do, like spending enormous amounts of time reading medical journals for the latest papers published on my illness. Not gonna happen.

I can definitely recommend The Patient’s Playbook as a helpful resource to add to your toolkit. It’s been a long time since I read a book that offered any new information that I haven’t already read a million times before. But it’s not a magic bullet. As we chronic illness patients know all too well, sometimes you do everything you humanly can, and the best outcome you get is just being able to maintain the status quo. But sometimes, if we’re lucky, that can be enough.

If you’d like to check out The Patient’s Playbook, it releases in paperback today, and can be found here on Amazon.

Visit The Patient’s Playbook website for additional resources and information.

Visit Leslie Michelson’s Facebook author page here.

 

Filed Under: CFG Shares Some Cool Stuff

Product Review: Mo’s Dream Cream

July 13, 2016 By Jenny Ryan 2 Comments

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I was recently given the chance to try out a new pain relieving lotion, Mo’s Dream Cream, as well as their No Mo Pain Stick, as  possible new tools for my pain management toolkit.

The first thing I noticed-and appreciated-about Mo’s is that it is not at all greasy when you apply it to your skin. It went on smoothly and easily, and absorbed quickly into my skin, and I didn’t feel like I had to immediately wash my hands afterwards like I do when I use other ointments and salves. Although another thing I really like about this lotion is that if for some reason I do have to wash my hands after I put it on, despite capsaicin being one of the ingredients, it doesn’t burn when the water touches my skin.

The next thing I noticed about Mo’s after I used it for the first time is that it didn’t intensify my pain before it started to relieve my pain. I’ve tried lotions and ointments before that have capsaicin as one of their main ingredients,  and that once I apply them then make my skin feel like it is burning and throbbing before the pain relief starts to set in. But that is definitely not the case with Mo’s.

I also like the way that Mo’s smells-and the ways it doesn’t. One thing I really dislike about the topical pain relievers you buy at the drug store is how strong and medicinal they smell, usually like camphor or mentholatum. And the odor just seems to go on and on forever, especially if you get it on your clothes. But although Mo’s does have a strong odor when you first put it on it’s composed of nice things, like wintergreen and clove essential oils.

As for pain relief, I give Mo’s high marks. Summer is always a time of high pain flares for me, and I’ve been really grateful to have this new tool in my fight against pain. For me, the lotion did not reduce my pain all the way down to a level where I could use it as a substitute for my pain meds, but it did help me start getting some quick relief as I waited for the meds to kick in. (Your mileage may very.)

If you’re interested in trying Mo’s Dream Cream for yourself its creator, Keri, has set up a promo code for readers of this blog that will never expire. If you use JENNY4U you will receive 10% off of all products and/or promotions. You can access the store here.

****Important Note: This is NOT an affiliate link. I do not receive ANY money if you decide to buy one of Mo’s products and choose to make your purchase using this link. I’m just sharing about a product that I’ve found to be quite useful in helping to manage my chronic pain.****

Filed Under: CFG Shares Some Cool Stuff

Product Review: PillSuite

May 24, 2016 By Jenny Ryan 3 Comments

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

So I was recently given the opportunity to try out a product called PillSuite, which was exciting for two reasons: first, I LOVE gadgets, and second, I can always use something to help me better organize my medications.

This is how my managing my meds used to look:

pillsuite1

I carted this bag with me wherever I went, and pulled out each pill bottle twice a day to take my meds. I’d tried those big plastic blocks with the flip lids and little compartments for each day’s pills, but that felt just as cumbersome to me, and if I took it on a trip I’d have to put it into a big ziploc bag because some of the flaps would pop open and the pills would all spill out.

When I opened the PillSuite box, this is what I saw:

pillsuite2

The orange carousel opens up to reveal seven compartments, one for each day’s collection of medications. I have to fill this twice myself, since I take one set of meds in the morning, and another one in the afternoon.

pillsuite3

Once you fill up all the compartments and put the top back on,

pillsuite4

you use the spout to pour each compartment’s pills into individual plastic bags.

pillsuite5

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Finally, you insert the bag of pills into the sealer machine

pillsuite7

 

And you end up with 7 (or 14, in my case) small, sealed bags to deal with, instead of a Big Bag-O-Pills.

pillsuite8

 

I LOVE my PillSuite. The only issues I’ve had with it are that the bags are thin and a little flimsy, so it can be hard to get them to stay on the spout when you’re pouring the pills in, and that I have to make sure and double check the seal on each bag to make sure it’s entirely closed, because I have occasionally had some spills.

So if you too are looking for a better way to manage your medications, I can definitely recommend PillSuite as a product that you should check out.

Filed Under: CFG Shares Some Cool Stuff

Product Review: FibroCane Serenitea

April 7, 2016 By Jenny Ryan Leave a Comment

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

For the past couple of months I have been testing out a new product to see if it’s something I can add to my box of tools for managing my fibromyalgia. It’s called Serenitea, and is made by Premier Bioceuticals.

There are a number of products in the FibroCane line, and they provide support for different aspects of fibromyalgia. Serenitea was created to help soothe anxiety and restlessness, especially for those times when you’re having a hard time falling asleep. But I have other treatments in place to help treat my sleep issues, so I was able to use this tea to support me in a different area.

In addition to  fibromyalgia I suffer from Bipolar Disorder with Rapid Cycling, which means I spend quite a bit of time in anxiety and restlessness. And Serenitea does a lovely job of helping to soothe the sharp edges so I can calm down a bit, start to relax and breath more easily, and figure out what I need to do next. (My Inner Hedonist would also like me to add that it tastes really good. I’m not a huge tea drinker, but I’ve had a lot of blends that are one-note wonders; Serenitea is a delicious mix of many different layers of flavors.)

So if you’re looking for a product to help you find a bit of soothing and relief for the times you’re stuck in anxiety and restlessness, I can definitely recommend FibroCane’s Serenitea to help.

Filed Under: CFG Shares Some Cool Stuff

Raise A Glass With Me…Or Perhaps A Pill Bottle?

May 11, 2015 By Jenny Ryan 1 Comment

fibromyalgia best blogs badge
Healthline

Last week I found out that, for the third time in the past four years, I made the list of Healthline.com’s Best Fibromyalgia Blogs.

This really means a lot to me, because after 10 years of blogging, half of those as Cranky Fibro Girl, I sometimes wonder if I have anything meaningful or helpful left to say about living with this illness. But it seems that there are still things left for me to do here, since every time I start wondering whether or not it’s time to pack it in I get an email like this, or I get a sweet comment from one of you.

I so appreciate every one of you who makes up this community here. Without you I wouldn’t be able to share my stories, or have this opportunity to channel at least a few parts of this experience into something good.

We’re not a chatty community-I see us more as gathering on the verandah of a large manor house (perhaps like one of those large English estates that they turned into convalescent homes during the two World Wars), sitting in rocking chairs or comfy chaise lounges, fanning ourselves and drinking cool, refreshing drinks as we share gentle conversation. And I love that. I feel each one of you here, comments or not, and since I am not very good at responding to all the lovely comments I do receive, I think I shall declare Blanket Comment Amnesty for all of us, so we only do what feels inspired.

So here’s to another year together. May it be gentle and kind. And when it’s not, may we find a soft, soothing place to land when we’re in the middle of the hard.

Blessings to all,

Jenny

Filed Under: CFG Shares Some Cool Stuff

New Toy

November 21, 2013 By Jenny Ryan 1 Comment

New Toy!

Writing deadline? What writing deadline?

Filed Under: CFG Shares Some Cool Stuff

You Guys, The Most Amazing Thing Just Happened!

August 7, 2012 By Jenny Ryan 5 Comments

Yesterday I found out that I was chosen by the editors of Healthline as one of the 21 Best Fibro Blogs of 2012!!

I was so stunned when I saw it that my brain sort of shut down, so I ran into my husband’s office to get some independent confirmation. He was deeply involved in his his current computer game and without even checking to see if he was in the middle of a battle or a complicated negotiation I blurted out, “Can you stop right now and come with me?”

“Is it urgent,” he asked, and I said “YES!”  Which made him think that I was having some kind of medical emergency, so I quickly amended my request with, “I think my blog just won an award!” Which then unfortunately ratcheted down his perception of the urgency of the situation and he asked, “Well, is it something I can look at here on my computer?” and, unable to bear it any longer I yelled out, “NO! YOU HAVE TO COME LOOK AT IT ON MY COMPUTER SO YOU CAN TELL ME WHETHER OR NOT I’M IMAGINING IT!”

So he did. And I wasn’t. And then, even though my ability to form words was still fairly impaired, I called my parents. But I had a better opening planned this time so as not to scare them, so when my mom answered the phone I yelled, “I! AM! FAMOUS!” And there was much rejoicing in the land.

However: if you know me even a little bit, you will probably not be surprised to learn that even though I’ve gained some notice as someone who can entertainingly write about fibromyalgia, I am still someone who needs constant supervision as I live with fibromyalgia, which explains why, this morning, I was required to undergo The Don’t Be Stupid Today Catechism, as administered by my husband.

This is a process I must frequently undergo as I suffer from a constant disconnect between what’s going on in my body, what’s going on in my life, what my actual capacity is for doing things during the day, and what it takes to recover from activities and what I need to do to take care of myself. Or “Being Sick Amnesia”, for short.

For example, last weekend we went to the mountains to hang out with my in-laws, including my sister-in-law and Super Niece, who is now crawling, and able to sit up on her own. Mr. Cranky Fibro Girl and I made our Olympic debut as babysitters, running the full gamut of experiences from The Thrill Of Victory (feeding! storytime! entertainment!), to The Agony Of Defeat (bedtime! unmitigated disaster!)

Now, even for a regular, healthy person, it’s pretty exhausting to care for an infant. But for someone with a chronic illness it is Super-Quadruply Difficult, with Extra-Bonus Hard Sprinkles on top. So, not surprisingly, all that picking up and performing and interacting and driving triggered a pain flare-up. Plus, I somehow managed to dislocate my jaw so badly that the whole lower side of my face was swollen and inflamed. So yesterday my pain was pretty much at Level 15 all day. (Oh, crap. Speaking of which, I was supposed to take a pain pill like 4 paragraphs ago. Hang on-I’ll be right back.)

This is where the disconnect set in. Because I’m guessing that were you to find yourself in a similar situation you would respond in appropriate ways by taking some pain medicine, putting on your pajamas, and finding something fairly mindless to do while you rested on the couch. I, on the other hand, interpreted my impaired physical state as meaning that this would be a FANTASTIC time to do our weekly grocery shopping and take one of my blouses over to see if it would match the cool necklace I saw last week at Avenue.

It is thanks to this kind of behavior that my husband has learned to give me daily instructions that are excruciatingly detailed and situation-specific, so as not to leave any loopholes for me to wiggle through. So this morning’s routine went like this:

My Husband: “So how many times are you going to go to the grocery store? And how many errands are you going to run?”

Me (getting to be off duty from housework? Not a problem): “Zero.”

My Husband: “And how many times are you going to go to the bookstore?”

Me (sad sigh, since they closed our local Barnes and Noble in June): “Zero.”

My Husband: “And how many times are you going to go look at necklaces?”

Me (holding up a zero with my thumb and forefinger, to reassure him that I’m really getting this): “Zero.”

My Husband: “And how many times are you going to go to the drugstore to look for lipstick?”

Me (oh, man, I can’t believe he remembered that one) (sighing in resignation): “Zero.”

Only then was it safe for him to go to work and leave me alone for the day.

And here’s the thing: it’s not like he’s trying to deprive me of anything or take away my fun. He’s trying to help me feel better and get out of pain. He wants me to be able to do more cool things, like going to the beach with my family and Super Nephew, who apparently has only one speed-“Whirlwind”-as he zooms through his little toddler life.

Now, in my defense, it is very, very hard to deal with physical pain. Especially since, when it gets to about Level 6, you’re so overloaded that your system kind of shorts out and you temporarily lose access to your higher brain functions. So by Level 15 you’ve pretty much lost your mind. In these kinds of situations pretty much the only thing I can do is move around a bit and try whatever I can to get the pain down to a level I can actually bear when I sit down and get quiet. (Although, I suppose there could a difference between “moving around a bit” and “epic shopping excursion”. Whatever.)

Anyway, here we are halfway through this day, and I’ve done really well. Thanks to all our good work this weekend, the house is clean. Dinner’s in the frig. We have clean underwear. And I’ve even been able to do some writing. So I think I can relax, thrown on some  jammies and have an Olympics/What Not To Wear/NCIS marathon.

But before I go, I just want to thank all of you, so SO much. To know that people are reading and enjoying me, and that I’m not sending my words out into the dark abyss means more to me than you can ever know. Thank you.

 

 

 

 

Filed Under: CFG Shares Some Cool Stuff

Special Guest Star Friday: Jennette Fulda, Author Of Chocolate & Vicodin

March 4, 2011 By Jenny Ryan 2 Comments

A few weeks ago I was contacted by the author Jennette Fulda, who asked if I would be interested in receiving a copy of her new book to read and review.

I replied, “Let me think about it YESPLEASESENDITRIGHTNOW!”

Chocolate & Vicodin is a story that so many of us here, unfortunately, are all too familiar with-mysterious chronic pain that shows up, sets up camp, and never ever goes away. In Jennette’s case, it is a headache that randomly showed up about 3 years ago without any apparent cause, resisted any improvement despite Fulda’s NUMEROUS attempts at various treatments, and has yet to go away.

One of my favorite parts of the book is the fact that she starts every chapter with some of the emails sent in by her blog readers, suggesting possible causes (such as a congested chakra, or a spirit hanging around her head in the form of a halo), and treatments (cheer up!, get your hair analyzed for the presence of toxins!) that they felt she should consider. (Because being told how to manage your health by people who have ABSOLUTELY NO IDEA what they are talking about is oh so helpful.)

Jennette has kindly agreed to visit us here at Cranky Fibro Girl today to discuss her book, as well as some of the situations she’s faced over the past few years as someone who lives with chronic pain.

Hi, Jennette, and welcome! We’re so glad to have you here. So let’s get started.

1. When I think about dealing with chronic pain and chronic illness, the first thing that comes to mind for me is the idea of QUESTIONS. I think that in the past 3 years, thanks to umpteen million doctor visits, as well as trying out all kinds of different therapies and treatments, I have been asked more questions than I have in the 35 years before I got sick.

So I was just wondering-are you tired of all the questions too? Is there a particular question that you wish people would STOP ASKING YOU, ALREADY?! (Mine is, when visiting my fibro doctor and discussing any current flare-ups is, “So, what do you think might have caused it?” I DON’T KNOW! That’s why I’m coming to see you!)

Then, on the other hand, is there a question you wish people would ask you? Or maybe some kind of prepared statement you could just hand out on a little card so you didn’t have to re-explain everything to every person you meet?

I definitely wish I had a little card explaining my condition. I might just do that, now that you’ve suggested it 🙂 The problem with having a headache that never goes away (besides the headache itself, obviously) is that it’s not a well-known phenomenon. I have to explain my symptoms to everyone who asks about it. I wish I could just say I have diabetes or multiple sclerosis or some other well-known disease. Most people understand what those conditions entail and what basic treatment options there are. But because almost everyone has had a headache at one time or another, everyone has advice for me which isn’t really on par with the seriousness and inscrutability of my illness.

The one question I hate the most is when someone asks me, “How have your headaches been?” Notice the plural: headaches. I don’t have headaches! I have one, singular headache that has never gone away for three years. When someone uses the plural, especially a doctor, it makes me think they don’t really understand my condition.

2. Did you have someone to go to all your doctors’ appointments with you, or were you all by yourself. If so, how did you manage being the patient as well as the patient advocate? Is there any advice you have to give to others who might find themselves in a similar situation?

I went to most of the appointments by myself. Driving usually aggravates my pain, so when I was travelling several hours both ways to the headache clinic, my mother came with me a few times so we could split the drive. It definitely would have helped to have a patient advocate along with me, but I did ok by myself, probably because I’m a highly organized person. I would write out questions in advance to make sure I covered everything I wanted to in my appointments.

As I saw more doctors, I started to see them less as all-knowing gods and more like partners in the project of getting me better health. When you see them more as equals it’s easier to question them or move on to another doctor if your needs aren’t being met. Just remember you have the power. The easiest way to give up power is to believe you don’t have any.

3.  Did you have any kind of guidelines or rules in your own mind that helped you decide whether or not to try a treatment? What did it take for you to get to the “pissed off factor” (sorry if that’s the wrong term-I don’t have your book in front of me) with any given treatment?

I didn’t have any specific guidelines, but if a treatment sounded really uncomfortable or out in Weirdsville, I wouldn’t do it. I did experiment with many treatments that I didn’t have much faith in and never would have tried if I weren’t ill, like acupuncture, chiropractics, and craniosacral massage. So I did keep an open mind, and an open wallet. The biggest factor in abandoning treatments ended up being expense. I did one round of Botox after the book and would have liked to do a couple more since you can see improved results after several treatments, but I couldn’t afford $1000 every 3 months.

4. I’ve learned that part of dealing with my fibromyalgia is having to educate the people around me by letting them know specifically what to or not to say, how I need them to say it to me, how to ask for help, and how to let them know exactly the form in which I need them to give me said help. Have you had to do anything similar with the people around you?

Yeah, to an extent, but I think I’m still learning how to do that without pissing people off. I’ve tried to let my blog readers know I don’t want their advice, as well intentioned as it is, without sounding like an ungrateful wretch. I’m not sure how successful I’ve been at that. It’s hard to get people to understand how annoying it is when someone presumes to know your body better than you do and insists on telling you how to run your life because they think you’re doing it wrong. Hopefully the book will give people a better sense of how to interact with someone with a chronic illness.

5. Also speaking from my own personal experience, I know that I have tried very hard to find some kind of meaning or purpose in having to live with chronic pain and illness. Sometimes I can, and then other times it just seems to be more like, “Well, I have fibromyalgia because I have fibromyalgia.” Have you been able to find any kind of meaning or purpose in your experience?

That’s basically why I wrote the book. It gave meaning to an otherwise meaningless experience. Writing about everything I’d gone through made me understand it better. After I wrote the book, I realized the major arc of the story is learning to stop waiting for your old life to return and to accept the new life that you have. Hopefully by sharing my own experiences I can help others in similar situations.

I think purpose is a relative thing anyway. If you zoom out of your life and try to imagine how gigantic and old the universe is, you may realize that anything that happens on this planet is a cosmic blip that’s completely inconsequential in the great scheme of things. But then you can zoom back in again to just your life, your family and you friends and realize that the only thing that matters is the time we have here. You might be able to find your purpose somewhere in between those two extremes.

Jennette Fulda went to bed on February 17, 2008, with a headache, and more than three years later, it still hasn’t gone away. Yes, she’s tried everything: intravenous drugs, chiropractic adjustments, acupuncture, subliminal messaging, marijuana (for medical purposes only), heavy drinking (which just made it hurt more), and lots and lots of chocolate. A pint of ice cream makes her feel better, but her insurance doesn’t cover mint chocolate chip.

In this painfully honest, smart, and funny memoir, the popular PastaQueen.com blogger who chronicled her nearly two hundred pound weight loss in Half-Assed shares her incredible journey to find relief from a chronic headache. As she visits countless doctors, indulges all manner of unsolicited advice from the Internet, and investigates every possible cause, from a brain tumor to a dead twin living in her brain, Jennette considers what it means to suffer, how to live with pain, and why the best treatment might be the simplest: laughter.

Filed Under: CFG Shares Some Cool Stuff

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