Please Help My Dear Friend Get Teeth

I have a friend who is very ill with several, chronic, lifelong conditions. Her name is Dee, but she goes by "Line" on Facebook. She has Fibromyalgia, Crohn's, Arthritis, and lives with pain of many kinds on a daily basis. She has had to get her colon removed since I've known her, and with the infection and problems that occurred during all that, she has really been through hell. When I am in pain of any kind, I think of her as inspiration to go on. Her family has been dealing with their own health problems as well.

On top of all of these health problems, she's losing her teeth and cannot afford to get them fixed. Her insurance plan covers very little of the huge expense of the cost to fix her mouth so she can eat solid food again.

I can personally vouch for her. She is a very kind and beautiful person, and she absolutely hates to ask for help. Nobody likes to ask, but she is always giving of whatever she can to support others emotionally and has not asked for anything until now.

This is her last chance to fix her teeth so she can at least eat and get some nutrition into her body. If you have any way to contribute, even a small amount, please know that it is for a very good cause and will be used to restore her mouth to be able to eat solid food. It's a long way to the goal, but any small bit helps.

Also, please share this link freely as you can, to help spread the word.
http://www.gofundme.com/theinvisibleamongus

Thank you!

Fibro is Real

This is a good article for people who have been accused of, or have accused others of, being a hypochondriac when it comes to the symptoms of Fibromyalgia.  Those of us who suffer learn first-hand that the physical symptoms that affect us are ask too real. We have read the research to support it, and do our best to live with these symptoms. We definitely do not need the additional burden of ignorant accusations.
Is Fibromyalgia All in My Head?

Great Overview Video of FMS

Today I came across a great video.  It's a doctor giving a presentation about Fibromyalgia.  He describes what it is, what it isn't, how it's diagnosed, how it's treated, what patients experience, how Fibromyalgia pain has been studied and measured to be different than in other people.  There are detailed descriptions of many topics and lots of tips on treatment (especially non-drug treatments) and I even learned a few things.  At the very least, my foggy brain was reminded of things I'd forgotten I knew.

As I watched, I found this video to be a useful educational tool for both Fibromyalgia patients and their loved ones alike.  Direct people who are confused about FMS to this video, especially to certain areas relevant to the questions that perhaps you cannot find the right words to explain.  It's an hour and a half long, so if they really want to know, they'll watch.  That said, you may need to take breaks and watch it in manageable chunks.  I also suggest keeping a pad and pen nearby, for any notes you may want to jot down for yourself. There is also a question-and-answer segment at the end as well with questions from the audience. 

I've been diagnosed for over four years now, and have been experiencing chronic pain for over five years.  Having read and learned so much since then about Fibromyalgia, I must say that watching this overview was a great review that kind of puts all the pieces together nicely. 

I realize, though, that not all aspects of the condition are mentioned in this presentation.  For instance, pacing and stress are briefly mentioned, but not given as much time as they might deserve, if relating the portion of time in the video vs. importance in a fibromite's world.  He also doesn't go into great detail about every last symptom that might be grouped into the syndrome, though he picks several of the big ones.  This is a pretty detailed overview of the condition with what we know about it now.   Hopefully we will learn more in the coming years about the cause and better ways to treat or (dare to dream) cure it.

I hope you enjoy this video and learn something from it.  Share as needed.  I also hope that friends and family members of Fibromyalgia patients, and perhaps others in the medical community or general population, will watch at least some portion of this video and try to understand this confounding syndrome which, even Dr. Gross admits, doesn't really belong in any particular medical category because it affects everything.

Fibromyalgia: It's Real It's Manageable What You Can Do

The Chronic Lyme Disease Journey 101

As I mentioned in my last post, I'd just recently been doing a lot of research about Chronic Lyme Disease.  What started it all was a very detailed web page about Lyme that I'd stumbled into while recuperating from what I still am unsure hit me a couple of weekends ago.  I don't remember exactly how I found it, but knowing me, while I was suffering, I was probably searching on my smartphone for possible causes of my odd symptoms and clues about whether or not a doctor visit was warranted over it.

I have known about Chronic Lyme Disease and it's possible ties to Fibromyalgia and other mysterious illnesses only because a friend of mine told me of her successful battle with Lyme after first being diagnosed with Fibromyalgia.  As you savvy readers may already be aware, Fibromyalgia is not technically a "disease" - it is merely a syndrome, a collection of symptoms.  Fibromites like us have a large collection of systemic symptoms and the medical community has only gotten as far as giving the collection a name.  There is no known cause or cure for these symptoms, so our care pretty much consists of treatment of the symptoms that are most disruptive.  Treatments rarely improve things for most of us and, actually, many of us seem to worsen over time, despite our adherence to treatment regimens and habits.  Why?  "Nobody knows."  Or so they claim.

Increasingly, I'm becoming more and more aware of the complex world of Chronic Lyme Disease.  There is lots of information available out there from people who want to help spread awareness and knowledge, but there is also conflicting and misleading information, as well.  Sorting through it all can be confusing and disheartening, but knowing someone who has been through it, though, gives me a bit more confidence in finding the right information and making smarter decisions about it all.

First, I'll go over some of the very basics.  (I'm new to this, so please forgive me if it turns out I've misstated anything, but definitely correct me in the comments so I know.  Any supporting information via links would also be helpful.)

Lyme Disease is a bacterial infection that is carried by ticks and spreads to humans through tick-bites.  It seems the bacteria can cross from a mother to her baby during pregnancy as well.  If a person notices a tick bite, possibly that characteristic bulls-eye rash, and a rapid-onset illness, that person can likely be cured of the acute infection with a few weeks of antibiotics and be done with the entire thing.

What I'm learning about, and what is controversial in the medical community, is Chronic Lyme Disease.  This is when that same bacteria remains in a person's body for a long time, untreated and possibly unnoticed.  It may be dormant or latent, or may be affecting the person very slowly over years, so the person never associates any of his or her health effects with anything to do with Lyme or tick bites or even infection.  Tests for various illnesses usually come back negative, though the person continues to suffer new and worsening symptoms.  (Sound familiar, fibromites?)  Depending on where the infection decides to spread in the person's body, symptoms can vary.  Some organs may suffer more symptoms than others.  The skin, blood, bones, or brain can be affected, among all the other areas of the body.  Needless to say, infections that live in a person's body can do some nasty things to that person.

The controversy is perhaps a bit too complex for me to sum up here, but this bacterium is difficult to study and requires a researcher or doctor to dedicate quite a lot of time and effort to learning about it in order to understand it sufficiently to diagnose it in a person, and treat it effectively.  It can be hard to recognize and many undertrained doctors will miss it or flat out claim there is no infection present.  Another reason for this problem is that the testing that is currently available for detecting Lyme infection or the antibodies to it, are notoriously inaccurate.  False negatives and false positives are common, and most doctors don't realize this.  They might test, see a negative, and quash any further investigation into a Lyme infection possibility whether accurate or not.  This is obviously a problem.

The problem is bigger than most people realize, too.  The ticks that carry this disease used to be thought only to live in certain areas of the eastern United States, and perhaps a small area in Wisconsin.  As specialists continue to collect tick samples from various areas and check them for Lyme, it has become apparent that Lyme is spreading as these ticks are being opportunistic about surviving while other species that may have kept their populations in check are dying off.  It's reaching a lot of areas previously thought to not have any Lyme.  You can't always go by where people live, either.  These days, a lot of us travel frequently and all it takes is one, unlucky tick bite to become infected.  It could happen in one day-trip.  This is not just some rare disease anymore.  It's becoming a silent epidemic and ignorant doctors are inadvertently allowing it to continue to afflict their patients.

Personally, I have not been tested for Lyme Disease (yet).  I have brought it up to my most recent Neurologist, who served as my Fibromyalgia specialist.  The conversation went something like this.  

Me: I'm interested in ruling out other illnesses that seem similar to Fibromyalgia, like Lupus or Lyme.  Can we do some testing for those, for my peace of mind?
Doctor: We can test you for Lupus with an ANA.  I don't think you need to worry about Lyme.  That's only for people who live on the east coast.
Me: Are you sure?  I've traveled to North Carolina a few times, and I have been to Wisconsin woodlands numerous times.  I may have picked up a tick and not known it.
Doctor: Have you ever had the bulls-eye rash?
Me: I don't think so.
Doctor: Don't worry about it.  You don't have Lyme.

(The ANA came back negative, by the way.)

I also visited an infectious disease specialist all the way in downtown Chicago at a prestigious hospital, hoping for someone to take me seriously and just check me for anything my other doctors may have missed.  I basically got the same treatment when I brought up Lyme Disease (except he abandoned me when he got a phone call near the end of our appointment and just never returned).

Since these incidents about a year ago, I haven't thought about Lyme much at all.  In fact, I didn't really think much about it then.  I just wanted something better than a Fibromyalgia, dead-end diagnosis to work with, and since my friend turned out to have it, I thought I should get checked out, but I didn't think it was much of a possibility for me.  When I got dismissed by the doctors for bringing it up, I kind of abandoned the possibility and started to try to accept not knowing how or why I got ill and just deal with it as best as I can.

Then that web page I mentioned earlier in this post caught my attention and kind of hit me in the head with the details.  I was looking for details and was curious to learn about Lyme.  Although it's now old (2004), I am far behind and starting from scratch on learning about this all.  I read through it somewhat furiously, kind of like a hungry reader eats up the words of a juicy novel.  Why wasn't I aware of this?!  Why didn't anyone tell me?  I felt like I was actually understanding things about this disease that I'd until then, really only known a factoid or two about.  (It had to do with ticks and Lyme, CT, and was some weird disease that people over there got.  That was about all I knew before.)  What's worse, it started to feel relevant.  I didn't realize how common this infection had become and how common it had become for Fibro to actually turn out to be Lyme.  None of the Fibromyalgia resources that I trust and read carefully have mentioned Lyme at all, much less hypothesized that Lyme could be the cause we are all looking for.  None of them ever encouraged us to seek out a Lyme specialist and get checked out to at least rule out Lyme Disease.

I read this site from the perspective of, not someone who seriously thinks she may have Lyme, but rather from the perspective of someone who has a friend who went through it all and urged me to check it out for myself, just to be sure.  I was beginning to understand the technical stuff she'd tried to explain to me before.  (Fibro fog doesn't always allow for learning.)  After having read that page, Lyme now seemed a very remote possibility for me.  The more I learn from various sources, the more possible it seems that this might be something I've got.  I'm not convinced I have this infection, of course, but from what I've read, it seems I'm kind of a textbook case of Chronic Lyme Disease.

Today, I'm thinking I can no longer afford to assume that I'm not infected.  This is a serious illness and can kill under certain conditions.  I need to at least learn more about it and pursue an evaluation by a qualified LLMD (Lyme-Literate Medical Doctor).  There is no other option.  If I don't try to find out whether I'm infected or not, I'll never know.  I always tell people that if you are going to regret something, choose to risk regretting having DONE something, rather than having NOT DONE something.  At least you'll know if it was a bad idea, at worst.  If you never do it, you'll never even know if it was a bad idea or not.  So, I'm starting on my Lyme journey.

Since reading that first article, I've visited a few legitimate and helpful Lyme website and groups, asked for LLMD referrals from several sources, read more personal stories from members in all stages of their journeys, and watched a pretty good documentary about the topic, called "Under Our Skin", which happens to be available on Netflix if you have it, or Hulu online, if you'd like to watch it.  (It is less than 2 hours long.)  The trailer is also available on the film's website.  The film features many kinds of patients: newly diagnosed and starting treatment, severely ill, invisibly ill, mostly recovered, untreated, etc.  It also features several researchers and doctors, touched on the science of the spiral-shaped bacteria and the scientific difficulties of studying it (mostly in layman's terms) and the unfortunate controversy and crooked politics that have made treating this epidemic disease so expensive and difficult for most people who suffer with it.  While watching, I jotted down the names of anyone mentioned who might serve as a trusted resource of information or help to me or others looking for help with Lyme.  Many of these names are also listed at the website.  I would recommend watching this documentary as a good start in getting to understand the basics of Lyme disease and what it's like to get tested and treated for it.  The documentary itself has won many awards.  I was disappointed, however, in the lack of information regarding why testing is so difficult and inaccurate, though I'm reading more about iGeneX testing and how that is becoming a more trusted testing tool for Lyme.  I'm still learning about that.

Most recently, I read this national news article about someone whose spouse fell mysteriously ill and embarked on the Lyme journey.  A lot was learned on that journey first-hand, including the hot mess of political nonsense that continues to prevent many innocent victims from getting the care they deserve.  The article I read is actually an excerpt from a longer one, which you can read or listen to at the following link.  It's entitled "Chronic Lyme Disease: It's Time To Solve The Medical Mystery Inside An Enigma" By Laurie McClellan.


From what I've read, the most effective treatment for Chronic Lyme Disease, a bacterial infection that can affect any and every organ in the body, is a very long treatment of antibiotics.  If the bacteria are present, the antibiotics will find them and start to kill them off.  The die-off of bacteria end up having to be removed from the body by way of all the garbage-collecting organs, like liver and kidneys.  Many of you fibromites already know how taxing it can be on your livers to just take the prescription medications we all take to try to keep our symptoms reasonable.  Imagine your liver trying to clean up a very large amount of dead bacteria!  It can drain you in much the same way any flare-up can.  The term for this symptom flare-up that is caused by antibiotic treatment is the Herx reaction, short for "The Jarisch-Herxheimer Reaction".  You can learn more about it by searching the web, as many have described it in both scientific and personal terms.

Whether you have Fibromyalgia, Chronic Fatigue Syndrome, MS, Lupus, ALS, Parkinson's, undiagnosed systemic symptoms, or aren't ill at all, I encourage you all to read at least the abbreviated version of the aforementioned article, watch the documentary, and learn more about Chronic Lyme.  Join the groups online.  Some good ones I'm in through Facebook are Turn the Corner Foundation, which stems from their full website, and Lyme Disease Awareness.  Lyme Disease Association, Inc. and International Lyme And Associated Diseases Society are also good websites to check out and learn more.

"A journey of a thousand miles begins with a single step."

If you have Fibromyalgia, many Lyme patients in these groups will feel your frustration and assure you that Lyme is very likely the cause of your systemic symptoms, as it was discovered to be for them.  Although it's a definite possibility, know that these patients are not necessarily Lyme specialist doctors (LLMDs) or sure that all Fibromyalgia equals Lyme Disease.  But do consider the the fact that many of them were given a Fibromyalgia diagnosis and left to live with that as a final diagnosis, then tested and treated for Lyme and found relief.  Everyone is different and everyone needs to be considered individually.  Treatment has helped or even "cured" many already, but it can be expensive and taxing on the body.  I'm open to the possibility that Lyme is not the cause of my symptoms, but it could be for yours or for someone you know.  It takes time to learn enough about Chronic Lyme Disease and how to go about getting the best testing and treatment available, and consider the risks associated with embarking upon that arduous journey.  But I want to know.  I need to know.  I am going to select an LLMD, make arrangements to set up an appointment and travel to make it, bring my notes and questions, and find out what my options are.  If I don't seem likely to have Lyme, I leave knowing I've checked it out as best as I can and go back to living with Fibromyalgia.  If I do seem likely to have Lyme and the doctor offers treatment, I will try it knowing it will probably make me feel awful for a long time if it works.  I will take comfort in knowing that the suffering will end or ease up and I will have done what I could to minimize the damage.
 
Are any of you on the Chronic Lyme Disease journey, or have you completed it?  How have things gone for you?  What went well?  What didn't?  What have you learned?  Which websites or groups do you find most helpful?  I'd really like to read your comments and please leave any advice you may have for me, a beginner, as well as any of my curious readers.  Knowing is half the battle, eh? 

Stressing and Pacing with FMS

My last post showed you how I look when my face gets all hot and red. I've been noticing that's died down a bit now, thankfully, though I still notice hot flushes. Actually, maybe I'm just getting used to it and noticing it less, rather than the actual occurrences being reduced. At any rate, I don't always check how red I look now. I just wait it out and go about my business. I'm usually at work when it happens, so I have plenty of distractions.

Speaking of work (well, writing of work, I guess), it's been quite ridiculous with all the meetings, tight deadlines, and lots of work to do and no time to be at my desk to actually do it because of all the damned meetings! I am working on a new, very important project that is expected to be delivered in a few months and things are moving quickly on it. I guess that would be fine if it weren't for the other, usual work things that come up, and if I didn't have to deal with chronic health issues - all at the same time. In addition, there are other things going on in my life - loved ones with health issues and strained family relationships - that are adding to the stress pile.

The net effect of all this stress is that my body has been nagging me about taking a break. Meanwhile, I've been asking it to please wait for a better time to argue with me. Well, I give up. Today's the day. Okay, body? After I post this blog entry, I'm going to bed to rest. All day! That's going to have to do. I have too much going on to spare more than a day at a time. I also don't get paid for this time off, so I don't want financial stresses added to my pile. It's a bit of a catch-22 that way. Anyway, I'm willing to compromise with this day and see how long it gets me. Next week's work schedule is nuts all over again, so I'll have to be ready. If I'm not, there's going to have to be some rescheduling, I guess. It's nothing I haven't done before, but I really hate the feeling. I guess I need to get over that.

It's like I keep telling my friends: I can't help anyone else until I help myself. Remember the oxygen masks on the airplane. They instruct adults to put on their own masks first, then help their kids or others. If you faint, you can't help anyone. I try to picture that during times like this. I need to listen to my own advice more often. I'm still learning how to live with this fibrobeast.

Anyone Miss Me?

Mallory, my Fibroduck and I have been busy lately. In the nicer weather, we like to enjoy my yard, "Native Suburbia". The plants are growing, blooming, and transforming faster than we can keep track! We've even gotten some new species added to the growing list of natives we grow, thanks to a plant sale at our local Wild Ones chapter in DuPage County, Illinois.

It's been quite rainy and the temperatures have been bouncing between the 40's and 80's (Fahrenheit) in Chicagoland over the past month or so. Today I managed to get a sunburn on my shoulders, but yesterday, the storms flooded the street and our basement a little. We're due again for hot storms tomorrow. I sure hope our basement doesn't flood again.

In the meantime, I've been enjoying the good days and trying to smile through the bad ones. With help from my husband Don and my kind friends, I've been better able to keep my mood up, despite the pains and discomfort, and some added stress related to a project at work. I'm doing my best to be reliable and get my share of the work done on the project so we can get things completed on time and with as few problems as possible. So far I'm feeling pretty optimistic about it.

I'll try to keep you all posted on things more frequently. I guess I've been hoping to get away from the computer desk while at home lately. Since I am at a computer all day long at work, I feel like I need to try not to do the same at home. I get a bit behind in my blog reading and my emails, too, so don't feel like I'm just slacking here. ;)

I hope things are at least reasonable wherever you are and whenever you find yourself reading this post. I hope my next post will be happy news for you.

Exercising, Making Friends, and Blog Stuff

Exercising:
I've been slacking on the "Baby Steps" lately, due to the pain in my left side, which I believe is a pulled muscle from coughing strenuously for a couple weeks straight. I did few or no sit-ups in the previous few weeks, and the rest of the workout was stagnating at level 10+4, with my doing some of the other exercises only sporadically.

A few days ago, I decided to see if sit-ups were tolerable with the remaining side pain and gave it a go. It hurts a bit, but I was able to do all 10, so I'm back on track, moved up to 10+5, and I'm doing all of my daily exercises again, starting last Monday. Whoo-hoo! It's hard work, but completing them does make me feel better, mentally.

Making Friends:
In other news, I met an online fibromite friend for the first time last weekend - VinaMist, author of her blog Just Breathe and contributing writer for the online arts journal Escape into Life. She's very nice. We had a great time talking over brunch (once we overcame my fibrofog mishap that prevented me from finding the place on my own).

We had tried to meet up once before, many months ago, but a family emergency kept that event from occurring. I'm glad we could finally get to know each other in person. It's very important to stay social with chronic illness, as it can be isolating. Befriending understanding people with similar health issues can be very rewarding for us fibromites.

Blog Stuff:
One final note: Blogger has announced a new feature for reading blogs in a cleaner format. I've included a link to this new format in my new "Other" page on the main blog. Other pages are still under construction for now, but keep an eye out for updated content on these new pages.

As always, I welcome your comments and feedback, and I'm always happy to make new fibromites friends. We are a FMily. :)

Today is my Third Anniversary

Okay, well, it's not necessarily one I like to celebrate - it's the anniversary of my original Fibromyalgia diagnosis, in 2008. I was first diagnosed with Fibromyalgia by a rheumatologist. As a treatment plan, he put me on Lyrica and then Cymbalta, both with awful results. After that, the young doctor seemed to be out of ideas, so I looked for a more experienced doctor.

I found a doctor who specialized in Fibromyalgia patients, got re-diagnosed (pretty much at every appointment) using the standard pressure-point test, and saw him for a while. He started me on Pristiq to regulate serotonin, and also prescribed sleeping meds to help me sleep. I also had a pain medication at my disposal for managing flare-ups. I made some progress and was glad to have found this doctor. One of the most important things he studied, was a theory that an overabundance of yeast in the digestive tract is the ultimate cause of Fibromyalgia symptoms, and could be better managed or even cured by using anti-fungals and maintaining a strict "yeast-free" diet for at least 6 months, then as needed.

I tried this treatment for 3 months without cheating, because I was very curious to see if this treatment would be effective for me. This meant I could have: no bread, no beer, no sugar, no fermented products, no preservatives or artificial sweeteners, very limited fruit and dairy, and pretty much nothing pre-packaged unless it was whole grain or free of all the other forbidden stuff. I basically ended up eating home-chopped salads with lime juice for dressing, and Triscuits (whole wheat) for lunches, and clean meats and veggies for dinners. I'd snack on veggies and have fruit for dessert. Cheese was a special treat.

Basically, I lost 20 pounds in 3 months, I felt worse painwise, and I was not happy about being a social pariah because I couldn't go out to dinner or eat "regaular" foods with my husband or friends anymore. I was skinny and miserable. The doctor saw my ribs and urged me to quit the diet and eat some ice cream or something. Not long after that, the doctor closed up shop and I was looking for a new fibro doctor again. (I'm not sure I was the cause of the closing up of the shop, but I do wonder sometimes.)

I found a neurologist who works in a pain clinic setting. He is very familiar with Fibromyalgia as well as other chronic pain conditions. This is the doctor I currently see now. He is a great listener and we manage my treatments together. I ask lots of questions, tell him how my health has been between visits, and tell him what I consider most important about my symptoms at the time. If necessary, we change up medications or talk about non-medical treatments that could help. I suspect he doubles as my psychiatrist, as he's usually typing a lot of information as I talk. Thus far, it's been a good match, I think.

So, today, I reflect on my journey from undiagnosed to having been officially diagnosed with Fibromyalgia for three full years now. Back then, I had just learned the word and all the packaged symptoms it entails. I have tried many types of treatments and have experienced many ups and downs. I've learned lots about what it means to have Fibromyalgia and deal with its unpredictable nature. I've also connected with many others like myself through online groups and made great friendships I probably would not have, otherwise.

It's been a relatively short journey thus far, but I have already made much progress. I'm hoping that the remainder of my journey will only get easier with time and experience.

Special thanks to everyone who has contributed to my learning and understanding

along the way. This includes doctors, researchers, nonprofit organizations and their publications, support groups, all my fibrofriends, and last but not least, my friends and family - especially my husband Don - who have been supportive and understanding of my body's changes, even before I could be. I am grateful for you and the help I get from you every single day. I am able to deal with this only because of you.

THANK YOU! 

What Am I Smiling About?

The other day, Don and I went out with some friends to enjoy some of our favorite beers together.  During the conversation, I started noticing my back was making sitting uncomfortable.  At first, I ignored it and tried to make the most of the socializing fun.  Eventually, I gave out and slouched, noticeably.  Apparently, I maintained a big smile on my face while I slouched in pain, oddly.  I wasn't aware until one of my friends looked at me and curiously asked me what I was smiling about.  I don't know!  I guess I was trying to remain pleasant, despite my personal struggles.  Perhaps the slouch itself made me smile because it was a silly position to take, in public.  Whatever it was, it made me realize that I must do a great job of disguising my pain in front of others.  

When asked about my smile, I confessed that my back was hurting me and I didn't know how to relieve it, I got a bit of a pitiful, synchronized groan from the group.  I don't want people to pity me.  This became apparent to me while I was using a cane to get around at work for a few days.  The cane elicits such a pity response from everyone who knows you!  I found it ironic that the cane really only indicated foot/leg pain or balance issues, while the other pains and problems of Fibromyalgia and my myriad other health problems continue - cane or no cane.  When the cane stopped accompanying me to work, these same folks would delight in my improvement, assuming I was feeling perfect because there was no cane.  This assumption is so wrong it disgusted me.  I blurted out my feelings to some of my coworkers who felt compelled to celebrate my caneless walking.  I also recall telling people not to pity me when they saw me with the cane and instantly frowned and gave me that look. 

So, as I slouched, smiling like an idiot, it occurred to me that I am enabling this whole perception problem to continue.  I'm part of the problem.  People are confused about how I feel and what I'm experiencing because I'm not being true about it.  I'm trying to fool them.  But why?  I never though of myself as a dishonest person.  In fact, I suck at lying and always try to be honest with people, even when it's uncomfortable.  You can't help someone understand you if you lie to them.  So what's with my phony public persona?

Like many folks, I have learned that talking about pains and problems that others don't have is usually no fun for either party.  I hate being a whiner - I want to be tough!  Everyone wants to be strong.  Nobody likes to be weak.  I don't like to ask for help.  I don't like pity.  I want to be independent and able to help others.  

Well, it's nice to want things, isn't it?  I need to face facts.  My condition is limiting, sometimes more so than others.  It is poorly understood and poorly managed.  I have ups and downs and I don't know when the direction will shift.  Sometimes I think it's about time for an up, but I drop down a little more first.  Fibro hurts.  I need to work on the realization that I am chronically ill and am not as healthy as many others out there.  There are others who are ill as well, and they will understand better my ups and downs.  I need to trust that they can handle the truth about how I'm feeling.  I need to give my friends more credit.

Being a party pooper sucks, too, though.  I hate to ruin a party with my awkwardly depressing status updates.  Everyone wants to help, though there is usually nothing they can do.  Perhaps I'm hoping I can fake it till I make it by pretending I'm not feeling quite as badly as I really am.  Sometimes, that works for me.  

At any rate, I'm learning about my ever-changing self and how to best handle the various situations that arise.  Do you have any stories or advice on how to handle the inconvenient symptoms with others around?  I'd love to hear from you.

Fibroletters, Fibromyalgia Letter Writing Campaign

I have recently discovered a great cause that helps to demonstrate how Fibromyalgia (FMS) affects people.  The name of the idea is Fibroletters, Fibromyalgia Letter Writing Campaign.  It was started by several patients with Fibromyalgia (among other conditions) to help the public understand of the reality of Fibromyalgia.  

Per the Facebook page, here is a description of the purpose of this campaign.

This is not an FMS awareness campaign, but more of an FMS humane campaign.

The purpose of the group is to get at least 500 letters from those that suffer FMS, their families, friends, neighbors, co workers and anyone that can say how it not only affects the sufferer, but those around them.

Once we reach 500 letters they will all be mailed to the media AT ONE TIME. We are hoping that if its sent this way, it will be the same as if we were there. Each letter representing a person. Each person telling a story. Each story affecting another.

Please join us in sending a letter snail mail or email.  (More info is on the web page.)

Whether you are a patient, friend, relative, coworker, or just know someone with Fibromyalgia, you will very likely have a perspective on how this health condition has affected you.  Most readers of this blog (if not all) know someone who has Fibromyalgia.  Many of you know me, and if you know me, you know someone with Fibromyalgia. 

I have already written and submitted my letter via email.  Will you please take a few moments to write a few words about how Fibromyalgia has affected your life and send it in as well?  There is no cost, other than time, and your words will have an impact on this campaign.  Your letter can help make a difference.  

Please write a letter and send it in.  Share this campaign with others you know.  Join the Facebook page.  Visit the website.  Share the link with your friends and invite them to join.  Post the call for letters in your blog or networks.  Email about it.  Talk about it.  Tweet about it.  Get the word out any way you can so they can reach their goal of 500 letters.

Our healing begins with understanding and the best way to help others understand is to write a personal letter.

Thank you!

What traits do you have that make you a good friend?

This questions is probably best answered by my friends, of course, but here are the traits I have tried to develop in myself over the years:
- I'm honest and don't pretend
- I am true to my word (I don't make promises lightly)
- I give when I see a need and am able to give
- I keep my expectations of others low
- I strive to keep an open mind and look at situations from all perspectives before making a judgment about someone (sometimes I frustrate with my "Devil's Advocate" questioning)
- I try to be sensitive to other people's moods and mindsets
- I share my feelings (I like to be open about my moods and opinions, so there is little misunderstanding)
- I know I'm not perfect and neither is anyone else

Having listed all those wonderful qualities, I feel compelled to add that I stumble and make mistakes now and then. This is how I learned and adapted in life, noting consequences and regrets, as well as successes. My goal as a friend is to make you feel accepted for who you are and offer comfort and encouragement when it is needed.

Friends, I wouldn't be opposed to your honest feedback on any of the above. Feel free to leave your comments in my blog, Twitter, or FB page. I am interested in everyone's thoughts.

Ask me anything

I'll Get By With a Little Help From My Friends

I'm doing much better today, thanks in part to my fantastic friends who were brave enough to contact me despite my gruff demeanor this morning.  A few kind words do go a long way, especially when things seem dire.  

I learned to appreciate the fact that I'm managing to handle the adversity I have, even though I sometimes get a little lost along the way.  It's a bit of an ego-boost to say I'm better than average because I'm so constantly challenged, but hey, it works. :)

Lastly, I want to remind myself and everyone else of something I'd forgotten: 

"I will have better days."

I had this little note jotted down on a post-it for a while, but I guess I thought I had it down pat because I got rid of it.  Well, I don't.  When shit hits the fan (like yesterday and the day before), all logic seems to go with it as well.  A small reminder like that one (or "don't panic") will probably do wonders for me when I can't think clearly enough to remember that I'm just dealing with a temporary flare-up.  Today is proof that it was temporary.  I do feel much better and even managed to laugh and smile a bit.  I'm going to have to come up with a clever way to make sure I can see this reminder when I need it most.

Thanks everyone.  Just knowing you are reading this is helpful to me.

Friends in Need

I'm a big proponent of reaching out to others for the somewhat selfish goal of feeling good oneself, and for the altruistic goal of making someone else feel good.  I'm also a big proponent of killing two birds with one stone.  I have found the secret to happiness.  It lies with the spirit of giving and getting at the same time.

Yes, I have unmet needs, and there are times, when I feel especially shitty, when I seem to have nothing left to give anyone, not even to my own self.  These are very low days for me.  But I also have some reasonably okay days, too.  What I've discovered is that there are some things that I can give someone while I am able that can help me feel better on my worst days while also helping someone else at the same time.

Giving something to a friend in need is actually a gift to my future self!  It's a gift I can rely on to help keep me out of that low pit of pitifulness when things seem to be falling apart in every single way and then some.

Now, I'm not talking about giving millions to charity or buying someone a requisite* birthday gift.  (*I'll share my philosophy on gift-giving holidays in another post.)  The kinds of things I'm talking about are:

• a laugh
• a hug
• a few minutes of kind understanding
• a massage
• an inexpensive but useful and appreciated physical item (like a journal)

So, this blog post is my gift to some of my fibro friends who really, really need right now: SarahBear & Coffeesister.

Sarah is young and has Fibromyalgia.  She's had this condition for years and is not getting appropriate treatment.  Anyone with Fibromyalgia knows how challenging it can be to stay motivated while in constant pain and exhausted (not to mention dealing with the myriad other symptoms that FM brings).  She lives in a remote area with no health insurance, and also has very limited funds.  But she's a go-getter and she has a plan.  She believes that a Fibromyalgia & Fatigue Centers, Inc. treatment center a few states away can help her significantly, if only she could raise enough money to travel there and pay for the treatments.  She knows it's not a cure, but it's better than the care she's getting now.

I believe it's a good plan, but it's one of those long shots.  She can't do this alone, so if you're reading this post and have a drawerful of change reserved for the vending machine, please consider giving just a buck or two to Sarah.  Here is the Facebook page describing her mission.  She has a PayPal account set up just for this goal and she is extremely grateful for any bit she gets.  She's also on Twitter if you're interested in following her tweets.

Coffeesister is the alias to a vibrant woman named Dorian.  As you can guess, she loves coffee...

(|_|*cheers*|_|)

...but she's also another victim of Fibromyalgia.  She and her honey are on a mission to move.  For most folks, moving is a bit of a pain in the ass, but it's not that big a deal.  It's a lot more challenging and complicated when you're broke and time is not on your side.  But I believe they can do it.  Dorian is creative and wise, and she's eking out usefulness from every idea and penny that comes her way.

Like Sarah, she's very grateful for all the love, whatever form it takes.  Again, if you can spare a couple bucks to help Dorian and Rhodester get to San Francisco, you will definitely be thanked profusely for it.  Here is their lovely PayPal account.  And here is Coffeesister's Twitter account.

Give your self some cheap love.  No, no - not like that!  Make a donation, or simply reach out to these wonderful people and share something personal and useful with them.  It does not have to be money (though they sure won't mind some) - even a kind word or two will do.  They both have blogs and every blogger loves getting supportive comments.  (EVERY blogger!  *wink, wink*)  They're both fine individuals and just need a bit of a boost.  Anything you can offer them now will go a long way toward keeping them afloat and will help you feel all warm and fuzzy inside at the same time.  Win-win!

I hope I've inspired you to look for opportunities to feel good about yourself and help someone when you can.

Thanks for reading.