Abandoned Fibro Blogs

I just unsubscribed from over a dozen blogs written by fibromyalgia sufferers about their lives with fibromyalgia. All of them have not published a post in over a thousand days. Nothing. Where did they all go?

Several years back, around the time of the great Facebook revolution, I did a brief stint on Twitter. While there, I found a group of fellow fibromites and some of them had blogs. We subscribed to each other's blogs and created our own, (myself included,) exchanging stories and insights about our many challenges. We wrote frequently back then, as there was a lot we had to say.

Maybe it's all been said now. I feel like I'm caught up on all the nuances of this fibro life, yet I still look for news and different perspectives here and there. Once in a great while, I share my own.

This has become clear recently while reviewing my Facebook Memories from years past. I used to post about my pains and health challenges, and sometimes my health victories. Now, I feel I don't want to bore or annoy my Facebook friends with the tedium of my particular collection of health problems. They may not understand what it's like to live like this, but maybe they don't need to.

I have learned that most everyone has their own set of problems. Would I want to read about them all? Wouldn't I start to see certain people as their most frequent complaints? This is not how I want people to see me. I am a person with interests and convictions. I look for opportunities to be more interesting. I am trying to live life.

Hopefully the lost fibro bloggers are all out living their lives and trying not to wallow in their pain. Although I know blogging is a good outlet for dealing with the struggles of living with an invisible illness, I know it can have the unfortunate consequence of limiting one's ability to move beyond that focus.

Today, my advice is to try to forget the bad and focus on the good, the positive. What can you do? What can you enjoy. Be a whole person.

Reflections on the Table

As the new year begins again, I reflect on last year's resolutions. I managed to get a couple of them done. (Hooray!) However, I piled on too much for myself, which is typical of me, and have a bunch of incomplete goals.  I'm not going to beat myself up about it, because I learned that it's okay.  I did make progress on all of the other ones, which is the whole point of setting goals.  This year, I'm giving higher priority to the old resolutions, with modifications, and see if I can do as well and manage to cross something off in a dozen months, even if I won't be able to cross all of them off.  Progress is progress and I will take it.

Well, winter is definitely on, here in the midwest.  It has been snowing and snowing! Plus we had that crazy "polar vortex" deep freeze a couple weeks back that kept me and many others home from work for a couple days. Knowing how the cold always exacerbates my symptoms, my dear husband has been dutifully shoveling the driveway and sidewalks all winter, without my help.  Thanks, Don!  I very much appreciate it!  

Despite my trying to stay warm, I have had a bit of a setback this week with a flare up that started a couple days ago. My back is apparently very angry that I exercised and kept working all week, so yesterday, it spasmed, painfully, all afternoon and all evening and through the night.  I woke up this morning unable to get up from bed for quite a long time, as the pain in my back raged on.  I knew I'd have to get up eventually, though, so I made my way to my heating pad, which helped.

It's incredibly frustrating to keep trying to be healthy and productive while the Chronic Myofascial Pain and Fibromyalgia keep conspiring to knock me down and punish me for it.  Like many other fibromites, I feel the better days that come along between flare ups can be both a blessing and a curse. The blessing is feeling less pain and feeling less miserable, but the curse is that we all seem to do too much on these good days, because it's our best chance at getting things done.  Then we crash hard because we overdid it.  But, I need to remember that I will have better days and I will have worse days, and it may not make any sense when they occur.  I do what I can to help minimize the worse days and plan for special occasions, but fibro doesn't care. I am still learning to accept that.

Moving on...

I find I'm feeling a little less willing to share my life's details here lately.  It's great to get things off my chest or share things I've learned, but sometimes I guess I just feel more private about things.  Hopefully that's okay with you.  I can't put my finger on it exactly, but it's just how I'm feeling. I have been playing with the idea of perhaps closing up the shop here and ending the blog altogether.  That seems a bit wrong of me, though, especially since I have been such a big proponent of blogging and journaling for anyone with chronic health issues.  

It's good to put things into words, you know?  And whether that occurs online, in a private email to a friend, or in a journal, or even just phrased in the mind, I have found answers to confounding questions, time after time, the very moment I finish phrasing the question.  Has this happened to you?  

For instance, I'll be racking my brain all day about, say, the name of an actor I saw in a commercial or something. After hours and hours of hoping for the answer to come to me, I finally ask someone else and BAM! As soon as I hear myself ask the question out loud, the correct answer pops right into my head. It happens at home and it happens at work.  At work, I have had the answer come to me after phrasing an email just right.  Many times, the email never has to be sent, because I figure it out once I just phrase the question right. I do hate to ask for help, which is why I'm glad I figured out this magical answer-finding tip. 

Anyway, getting back to my possibly quitting the blogging... I wonder who reads my words and if they help anyone. It's okay if this is all just a cathartic public journal for me, too, but I guess if I'd be missed, I might try harder to keep things going. I won't commit to anything today, but it's on my mind.  I have subscribed to many blogs over the years and have noticed that some just... stop. There is no good-bye, no warning, no indication that the author intended to quit or if the choice was made for him/her.  I wonder if those authors are okay.  Most of them just get busy, I know, and that's fine.  The blogging is an enhancement to the rest of their lives, which should take a higher priority.  I guess because I'm aware of how it feels to be a reader of a blog that just dies, I wanted to address the topic while I was still writing, in case I do decide to quit.

Like I said, I 'm still here and I will still attempt to post tidbits of knowledge and experience as they come to me, but if I'm not around for a while, just know I'm exercising my right to change things in my life to make it better for myself.  Stay warm!!

My Life at Forty

Ahh, life.  What is life?  It's consciousness, the ability to use energy and do things.  It's about choices as well as things that just kinda happen.  Some of my experiences are the results of my choices or the choices of others.  Some things also just happen.  Sometimes it's fun and happy; other times, not so much.

I turned 40 earlier this month.  I never used to care about age or understand why some people lie about their age.  "It's just a number," I would say to people.  30 was no big deal.  I felt fine with being a thirty-year-old.  It was just another birthday, though I do remember having a small party to celebrate it.  I suppose it was an excuse to to have a celebration and enjoy some pizza and cake with people.  Oh, and drinks.  Many, many drinks.  It was a good time.  I eased into adulthood, perhaps happy to leave the immature twenties behind.

In the weeks leading up to my 40th birthday, however, I kind of felt something new.  I kind of kept reflecting upon my age, my health, my death.  Will I live another 40 years?  Is this really the middle of my life?  The past forty years seem to have been short - will the next forty also feel short, or even shorter? 

I'm still not much for lying about age or denying it to myself.  I am facing these thoughts, mostly out loud to my husband, who turned 40 last year.  It's weird how I never anticipated this birthday being much more than some random milestone assigned by society.  I'm starting to get what those "Over the Hill" birthday party favors and gag gifts are about.  It's a way for everyone to acknowledge these feelings, but tempered with some humor.  I suppose celebrating birthdays with people both older and younger than yourself is really the right way to do it.  The older folks have gone through it already themselves, and survived!  That's encouraging.  The younger folks remind me of my younger days, not expecting to know what reaching older ages is like, both physically and mentally. 

Now that I've been "wearing" 40 for a few weeks, it seems to be less scary.  I still have to face the facts that I am now in a new age group.  Mammograms, colonoscopies, and bifocals are surely lining up for me in the near future.  I've had a few mammograms already - and yeah, OUCH - they are not fun.  But assuming the results keep coming back negative for any abnormalities, I'm okay with that. 

I came close to getting a colonoscopy back when my IBS was flaring up over several months, but as luck would have it, my awesome GI gave me a new medication that actually worked and we canceled the exam.  I am also aware of the process, as my husband has had several colonoscopies, due to his Crohn's disease.  It's not fun, lasts longer than a mammogram, and is pretty inconvenient, too.  Still, I can get through that.  I also have had an endoscopy done, if that counts for anything.

As for bifocals, I'm already nearsighted since high school, and usually opt for contact lenses to correct my distance vision.  Since that car accident in 2006, though, my vision has changed in several ways, and continues to change rather frequently.  I already notice my very near vision has become blurry, making reading fine print challenging.  Again, though, perhaps a prescription change is not so terrible.  I've been managing corrective lenses thus far.  I can probably handle that.  I guess.

So, these are not so scary.  Aging gracefully may still be an option for me.  Many folks make it to 80 and 90 in relatively good health.  With lifelong conditions like Fibromyalgia, Chronic Myofascial Pain, and Asthma, I understand I have additional challenges, but I also understand that being as fit as I can be is the key to empowering me with the best health I can achieve.  I know that eating healthy and staying active goes a long way toward preserving good health, so I will strive to do those things.

Some other recent events have also caused me to reflect on my age and mortality. 

Near the end of the workday on my 40th birthday, my husband suffered a severe kidney stone attack.  The stone was 6.5mm across and was stuck very near the left kidney.  I'll spare you the details, but life was miserable for him for several weeks thanks to this surprise.  We had to cancel my birthday party, and he felt bad about that, but I wanted him to feel better and stay close to home in case of any complications.  He's passed some of it and is feeling much better now, finally.

I also recently learned that my mother-in-law had suffered a stroke.  This was not her first, but it seems more serious that the one she had before I met her.  Although she was told that one side of her body will not recover this time, I am hoping that she can beat the odds and regain some function and sensation that was lost.  Thank goodness it was not her dominant side and she can still do some things.  I'm also glad that she can talk and remember us all. 

As we approach the year 2013, I have listed a few new resolutions (which I never used to do until 2012) that take into consideration my age, my health, my family, and my wants and needs.  I wish to be more responsible with my own health, as an investment of my old age as well as to help relieve others of the need to worry about me.  This includes considering making decisions and arrangements for what will happen to my remains when I die.  I feel it's the responsible thing to do. 

When life manages to give me warnings, I strive to make the most of it, whether it's through me or others, and learn something from it.  I won't live my life sheltered, but I will not live recklessly if I can help it.

Take care and do pay attention to your own body and look for the warning signs that could help keep you healthy and young at heart.  I hope the next year brings you closer to your personal goals and opens your eyes to wonderful opportunities! 

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? 

Locks of Love Haircut

I have been growing my hair since 2007, my last Locks of Love haircut. This time, I was able to donate a 13-inch ponytail to this charity for cancer kids. My husband shot video of the event, at my request. Here's the video.



My philosophy of giving to others in need as a healthy form of distraction from my health problems applies here. It doesn't hurt to give away some hair and not getting frequent haircuts fits right into my busy schedule. Come on. Do like me and grow out a pretty little pony tail for some unlucky kids who have to endure chemotherapy. 10 inches is the minimum.

If you're interested in donating to Locks of Love, it's easy! For more information on donating to Locks of Love, go to: http://www.locksoflove.org/donate.html

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.

The Vicious Circle of Rare Disease Diagnosis

Warning: I need to rant a bit here.

When you have been diagnosed with a multitude of health conditions that includes Fibromyalgia Syndrome, as I have, you may find the need to dig deeper and see if there is a more reasonable diagnosis lurking behind the myriad symptoms - something that ties at least some of the symptoms together and makes more sense.

After being diagnosed with Fibro in February of 2008, I thought I would find some relief, thinking "okay, we know what this is, now we can treat it." Today, almost three years later, I'm not feeling much relief. Although having some diagnosis for all the things that seem to be malfunctioning in my body was at first comforting, I have realized some things.

Fibromyalgia is merely the name of a syndrome, which means it is merely a short way of naming a collection of symptoms that occur together. It isn't actually classified as a disease or condition. Saying one has Fibromyalgia is just a way of saying that a certain (long) list of non-fatal symptoms is occurring in the person's body. Having a doctor declare to me that I am experiencing a collection of symptoms is really not very helpful, really. Tell me something I didn't already know! There is no way to treat the core problem because the core problem is simply not yet known. Treatments currently focus on relieving whichever symptoms cause the most distress to the patient, and many are ineffective or only mildly helpful at best.

Many doctors tend to shy away from things they don't understand. The medical journals and conferences tell them what the official word is on how to diagnose and treat patients, and they tend to follow protocol. That's good much of the time, but sometimes this pattern is not very helpful to the patient. If it looks like a duck and sounds like a duck, it's probably not a horse, right? But when patients have symptoms that greatly affect the quality of their lives, they want a little more than standard protocol from their doctors. Why are we dealing with so many systemic problems? Why does the list of symptoms continue to grow despite our best efforts at improving them? Why does coping reasonably with these symptoms while still searching for real answers seem to spell "hypochondriac" to doctors who hear our best guesses for investigating conditions with similar symptoms and decide we aren't sick enough to pursue those tests?

Here's the thing. Once upon a time, all the health conditions that are known today were unidentified. Over the centuries, humans have observed and recorded health problems and treatments. When patterns emerged, conditions were named. As the collection of health conditions amassed, new, albeit rare, conditions began to be named and documented. You know the saying "there's a first time for everything" right? It's true for named health conditions, too. Every condition we know about today was once new... and rare.

We have always had a collection of rare health conditions. Only a very few of the patients seen have been diagnosed with these rare conditions. Some of them have become less rare as more was learned and diagnosing methods were narrowed down. Today, we still have a great many "rare" diseases and conditions out there. Statistically, very few people have been diagnosed with these conditions - but there are some out there.

So, when I ask a doctor to consider the possibility that I may have a certain health conditions and the reply is "no, it's not that; that's very rare," I propose that that reason for coming to a dead end on figuring me out is bullshit. Doctors: If you fail to test people for conditions, you will have contributed to the "rarity" of those conditions by reducing the statistics - the very reason you have provided to me for failing to pursue investigation of the possibility that such a condition could make sense of my problems.

Another reason I have been given was that if I had such a condition, I'd be much sicker than I am. Again, logic fails. Whatever happened to the great advice of getting diagnosed early for conditions, so it can be treated and possibly cured before it progresses to a point where nothing helps? If I'm "not sick enough" to be considered for a condition, does that mean that doctors don't want to diagnose early? Will they consider the condition if I wait until I suffer much more? Is this humane??

There are some diagnostic tests that cost a lot to do or require much more reasoning and thought and time to put together, and I suspect that these are the real obstacles I'm fighting. If this is the case, I'm thoroughly disgusted. I am trying to live my life as best as I can while dealing with at least a dozen symptoms at any given time. Meanwhile, I'm working to improve my quality of life and reduce the burdens on others by searching for meaningful reasons for my body's failings. I'm motivated to do the research, though my medical knowledge is greatly limited. I need the help of medical experts to find these answers, yet the true rarity in medicine today is a doctor who is actually willing to empathize and help me find those answers.

My plea to doctors is this. Don't dismiss my hypotheses with the rarity excuse and don't use cost or effort as a reason either. My body is breaking down and I need a better diagnosis than a syndrome. Cost and effort of investigation should not play a part in my health. I need more effective treatments and I want to know if defects in my DNA or blood or other body parts could be the missing link in what I'm experiencing. If you don't want to help me improve my health, I don't need you at all. If you don't know the answers, call on a colleague who might. Don't discard me. I'm a human being. I want to live well and I want others like me to live well. If you were the one in my place, would you approach things differently? Think about it.

Making Molehills out of Mountains

I've been dealing with many symptoms lately - some old, some new - and have been a bit run down.  I'm noticing little tasks and chores are piling up on me while I postpone them to rest or try to get comfortable for a while.  I have notes about various things I jotted down while away from the place where I need to do them, reminders about stuff I need to do when not in the middle of doing something else, etc.   The result is a mountain of undone stuff that stares at me every time I sit down at my desk full of papers.

This is about the time I remembered to jot down one more note for myself: "Do just one thing."  Rather than bemoaning the fact that I am so behind on my pile of chores, I am going to rejuvenate myself by picking one task and getting it done and off the heap.  If getting that one thing done creates a productive inertia and I am up to doing more, even better.  But the pressure is off for the session after the first task is done.  

Last night, after I put up the note to remind me to take my own, good advice, I filed a few documents that have piled up in my inbox at home.  It only took me about five minutes to do, but it felt great to finally get that task done.  Once that was done, I checked one of my to-do lists for something quick I could squeeze in before dinner and got that done, too.  Whoohoo!  How could I have forgotten one of my best ideas so easily?  Let's just blame Fibro Fog for that. ;)

When you're in pain, procrastinating a task or two is okay - to a point, but if it becomes a habit, your self-esteem can feed into a vicious cycle of feeling depressed and having more pain.  Conquer that depression by doing one, easy thing that's been nagging at you for a few days (or weeks).  You'll be surprised at how much better you will feel by having even one thing finally be done and off the list.

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.

Wellington Bear

This is Wellington.

 

He has lived in our home for many years - a bit longer than I have been around, actually.  When I was having abdominal pains not too long ago, I decided he looked cuddly and soft and I wanted to hug him, to protect my belly and act as what I call a "magic pillow".

His name has inspired me to use him as a reminder and a symbol of wellness.  There are times when I don't feel so downright awful and I need to notice and appreciate those times.  Other times, when I do feel downright awful, Wellington is there for me to soothe me for a bit and appeal to my inner child while I wait out the pain and discomfort.

I want to thank the person who selected this bear as a gift for Don, many years ago.  She didn't name it or assign it this purpose, but I'm glad he was there for me to adopt and cuddle, (especially when Don is not available for cuddling).  Thanks, Kelly.

The Funk

I realized today, as I sat at home, sick with some virus, that I've got some issues to work out.  In a nutshell, I'm doing some binge eating, I've completely fallen off all of my "wagons," and I feel like I might be slipping into some sort of depression (again).  

I'm restless, unable to rest, yet unable to do anything productive.  There are things that are not that difficult that I should do, yet I don't feel able to concentrate enough on them to get them done properly.  Even this blog post had to wait until I forced myself to take action.  I've been kind of watching crap tv all day, not really able to understand what it's all for.  The reality shows are interesting, but I found myself wondering how those people manage to go to work and focus on getting their stuff done.  These hosts have jobs and they are helping people.  It sounds like a great gig.  Then I imagine what it would be like if I were to step into their shoes.  It was unnecessarily overwhelming.  Even a thought-exercise like that was too much for me today.  What is happening to me?  That doesn't seem right.

This time, however, I feel like I may be a tiny bit ahead of the game than the last time, simply because I'm not afraid to be aware of these feelings I'm having.  I'm behaving in ways I don't like and feeling somewhat powerless over the behaviors.  The behaviors come and go, so I have this false sense of control, peppered with extreme regrets and disappointment, disguised as mere setbacks, to help me move on.  

Truly, there is something messed up happening in my brain and I need to take more assertive action before it gets any worse.  I don't know how I'm going to proceed just yet, but at least I'm thinking about it and admitting that it's happening now.  People go through these kinds of things all the time, right?  I've seen movies.  People see shrinks.  Sometimes they find solutions, sometimes, they don't.  I was hoping that I could engage in self-therapy, what with all my researching knack and being cognizant about all this mess.  Then I realized that the journaling and the blogging has become less frequent.  I don't know how honest I've been with myself about some of these things in my own private journal, but I still feel like it hasn't been completely.  

I'm in a funk and I'm aware of it.  Perhaps calling it a "funk" is another way for me to soften the news to myself.  I don't know.  I'm still sorting through things and hoping to figure out a more effective plan for removing myself from it.

Does any of this make sense to you?  Does this kind of reflection belong in a private forum, rather than out here, for all the world to see?  Does it make you uncomfortable to know that this is what I'm going through?  My intent, of course, is not to make any of my readers uncomfortable, but rather twofold: to help me stick to pursuit of a plan to make positive changes, and to help my readers (I know someone out there must know where I'm coming from).

I've decided I am going to fight the funk and seek solutions.  I now know what hasn't been working for me with regard to the diet and exercise plans that I so carefully laid out in older posts.  I'm going to mark this as a less-ambitious, yet still very important, observational phase of my self-improvement project.  I need to understand when and why I fall into the kinds of behaviors I don't like.  Well, first, I need to identify all the behaviors that I don't like.  I'm working on this.  I'm hoping I can continue to keep my journey public, for the benefit of you and me.  

Let's learn together and pick each other up as we fall.  I know I'll fall.  I think it's important to realize that.  But I must learn to get back up again.  Feel free to publicly or privately share your thoughts on any of this.  I welcome your feedback.  Well, I guess I might not welcome some crap "suck it up" sentiments, but I am at least ready for that possibility.


Thanks for reading.

Don't Offer Me Any Donuts, Please

Apparently, the persisting tightness of my pants is not all in my imagination.  My last weigh-in this morning confirms what I feared - I'm slowly becoming... a whale.  

No, not a cute, baby whale.  A big, fat, blubbery, ugly one.

Okay, maybe that's a bit dramatic, but at 5' 4.5", I'm not tall enough to pull off a 150+ lb. weight.  I've never been this heavy in all my life.  I'm thoroughly disgusted with the weight gain especially because I know that I will have an even tougher time losing it, now that I have Fibromyalgia and Chronic Myofascial Pain preventing me from doing any meaningful exercise.  I can do some walking and some stretching, but that's about it.  Even after a walk, I've had to collapse from exhaustion upon my return home. 

All you super heroes reading this probably think I'm pathetic.  I might agree, but there's always that illness keeping me from blaming myself completely.  Perhaps that's the problem I need to address.  Although I can confidently blame Fibro for my pain and fatigue most times, I don't know that I can blame it completely for my fatness.  I've caught myself eating or overeating to try to distract myself from my symptoms, or to give myself some enjoyment in a painfully frustrating day.  It's not a bad thing to try to make myself feel happier, but turning to food - especially sweets and "bad" foods - is not a smart thing to do.  Frankly, I'm surprised I could let something like this get the best of me for so long.  Why did I wait to have this epiphany until now? 

Staying on the wagons I've laid out has proven to be much easier said (or written, rather) than actually done.  My flares are frequent and I never seem to know how I'm going to feel at any given minute.  I may wake up okay, then be fighting tears by evening - or vice versa.  I have skipped so many of my morning stretches, my strength-building exercises, and haven't done any regular walking or other aerobic activity, as I had planned.  What's more, I've been skipping all the Calorie Count logging I thought I would be doing to help me monitor my intake.  A little ice cream here, a couple beers there - and suddenly, I'm busting out of my jeans.

When I saw that horrid number on my scale this morning, I was going to keep this weight thing my dirty, little secret.  I decided it would be far too embarrassing to tell anyone about this.  I even considered removing that ladybug ticker from the bottom of this blog.  But after thinking a bit about it, I decided this isn't the worst thing to be guilty of.  Anyone with Fibromyalgia will certainly understand, as I'm sure the illness creates this problem for many of us as we struggle to survive the pain and fatigue and stress of life.  I knew someone out there would know all too well how this happens, and perhaps offer me some support.


I'd like to rise above this thing  I'd like to take this challenge and turn it into an opportunity to feel good about myself, instead of continuing to pity myself about how awful things are.  Sure, I might fail, but I'm not going to know if I succeed unless I try.  I'm going to try to do better and hopefully, once I can see any sort of progress, the momentum of success will help me to keep going.

That said, please do me a favor and don't offer me any donuts.  I love food, especially desserts, but my allowance for these kinds of foods needs to be drastically reduced.  Want to take a short walk with me?  Care for some healthy veggies instead of that hamburger?  Forgive me if I pass on your famous, homemade whatever.  Believe me: I really do want to have it, but I've got to take care of my body before it gives out on both of us.  I don't expect you all to change your behavior for me - I know you mean well.  I'll just have to resist temptations a little better and be braver about risking flares for the greater good.

Chronic Illness: A New Perspective

A very common theme in the many blogs and comments from folks with Fibromyalgia and other, incurable, chronic pain conditions is that the illness takes their previous, normal life away.  

I've recognized this same observation in myself.  There was the old me from before all my Fibromyalgia and Myofascial Pain, and now the new me feels like much less the person I used to be.  I have mourned my previous life and tried to come to terms with having lost many abilities that I once took for granted.  As the t-shirt I'm wearing today states, I am "always tired, always in pain, always uncomfortable".

In addition to the personal changes that illness brings, patients of Fibromyalgia also have a very difficult time assimilating into a society that can't see this invisible illness.  They have expectations of us that we want to fulfill, but physically cannot.  When the expectations and misunderstandings come from family or close friends, they are especially difficult. 

In an effort to keep myself from becoming hopelessly depressed about my current state of health, I am going to try an experimental perspective change.

What if I were to think of myself, now, as someone with normal capabilities, and recognize those in the world who can do more than me as extraordinary individuals with much more strength, stamina, and speed than I do?  

I can call myself and all my fibromite friends the "normal" ones - ones who feel pain all the time, ones who have to rest frequently, ones who don't sleep well, ones who need to write reminders for everything down - we are the ones who are the regular, typical people of the world.  

All those other folks - the ones who can participate in sports, the ones who have energy, ones who feel refreshed after a great night's sleep, ones who breeze through tasks like vacuuming or even shopping - these are all super-athletes of the world.  Young or old, there are quite a few of these people who have extraordinary potential and can run circles around us "normal" folks.

If you suffer from a chronic illness, especially an invisible one like Fibromyalgia, try this idea on for size and let me know what you think of it.  You don't have to share it with those super people, but see if the perspective will help.  After all, it seems like more of the world is ill than not these days, doesn't it?  Perhaps ill people are the new normal.

Wee! Wagon Train!

I know I said I can't be on all wagons at the same time, but after taking a month just to get back into stretching, and after taking almost another month to add in strength training exercises, I've suddenly found myself peeking at the other wagons and getting ahead of myself.  (I got antsy about the large list of goals I've made for myself and time ticking away.)

Here's what I'm currently doing and what I've learned from prioritizing my wagons and refocusing on each goal.

1. Exercise 
1. Stretching (started on 3/18/10)
   I've been doing mild stretching each morning, focusing key stretches on my newly discovered serratus anterior, to prevent that nasty spot at the bottom of my shoulder blade from coming back. 
   
   
   
2. Strength Training (started on 4/18/10)
   I've added a few very mild strength-building exercises to help regain some muscle mass. I used to do a few wall push-ups as part of the routine, but I'm noticing that these seem to be aggravating that serratus anterior trigger point under my arms, so I'm trying to mix it up and not too too many of these at a time. 
   
   I'm also making sure I try different exercises, specifically, exercises that target differing muscles and muscle groups, each day, so I don't overwork any muscles. 
   
   Fibro or not, I've learned that letting muscle tissue rest for a day is the best way to get results.  When you exercise muscles, the tissue tears a bit.  (They are miniscule tears, but together, they add up).  After a day of rest, the torn muscle tissues can heal and build back up, hopefully with more mass, translating to more strength for the next round of exercises.
   
   
   
3. Endurance Training (unofficially started on 5/4/10)
   May 4th was a pre-scheduled work-from-home day for me.  It was a lovely, sunny and warm day, so I tried on some of my shorts to break in the season.  Tragically, I could not find a pair that fit me!  Unbelievable!  So I weighed myself and was utterly disgusted.  I was 148 lbs.!  I've never been this heavy in my entire life!  It's dangerously close to 150, which I never want to be able to claim as my weight. 
   
   This shocking news is what prompted me to act on this and the next wagon sooner than originally planned.  So, when the work day was over, I put on my gym shoes and went outside to walk.  I could no longer wait to trim down.  It was beginning to cause additional problems with self-esteem and conundrums about my current wardrobe.  I pushed myself (risky for a fibromite like me) to walk farther than usual and ended up being out for 45 minutes.  It was exhausting, but I felt much better about myself for having done something positive.
   
   I hope to do much shorter walks on the nicer days, to try to get my heart muscle working and see if I can extend my activity tolerance a bit.  My last walk on 5/6/10 may have been too much, as I was exhausted and cold when I got back (it was chilly) and felt kind of exhausted for a few days afterward.  I need to make sure I'm not fooled by that happy sun when the temperatures aren't quite as high.
   
   
   
2. Weight Loss
   The day of that weigh-in and shorts debacle, I revamped my CalorieCount plans and decided to start logging my calories again.  I modified my diet start date to be 5/5/10 and put in my start weight at 148.  I also changed my end goal to be more reasonable and see how things go.  I simply couldn't stand to postpone this wagon any longer!
   
   
   
3. Reduce Medications (started May, 2010)
   I am trying to get more control of my pains and symptoms, so I won't have to take so many medications.  With the warmer weather coming, I'm also hoping that my pain will be reduced as well. 
   
   So far, I've been able to reduce my Ritalin dosing from two a day to one or none each day.  I've been experimenting with skipping my second dose, to see if there is any difference in my focus or mental capacities.  So far, I'm not noticing much difference.  Since this drug tends to make my heartbeat irregular a lot, I'm happy to reduce and, eventually, get off of it entirely.
   
   
   
4. Stop Finger Picking (started April, 2010)
   Don has been my inspiration on this.  Armed with Band-Aids, I've been trying to resist picking at my fingers, especially my thumbs.  I used to feel like it was too wasteful to cover my fingers in Band-Aids every day, but it definitely helps me to not be able to feel those rough spots, so it's worth it.  Sorry, environment, I have to make an exception for my own greater good. 
   
   Eventually, I hope to wean myself off the Band-Aids, but I'm not quite there yet.  When they get too wet from hand-washing toward the end of the day, I take them off and leave my fingers bare for the remainder of the day, but I notice that those are the times I still pick, so they do make a difference.

I'm feeling much better about all these goals now than when I first realized I was trying to juggle them all without having them concretely written down and prioritized, so being on more than one at a time is not as overwhelming any more.  If I do get overwhelmed again, however, I'll refer to this list order and make sure I choose the top ones over the bottom ones, if I have to sacrifice anything to survive.

I sure am happy to use this public forum to keep me motivated, too.  If you have anything you'd like to add or any comments about any of this stuff, I'd be happy to read them.  Please keep me going on these.  I need to know you're out there, to keep me honest. :)

Hey there Benia! I got your question and decided to ask you the same one. How did you come to be an Atheist? Were you raised to be an Atheist or as a religious person?

I was born of Polish-Catholic immigrant parents, in Chicago. They baptized me and put me through Catholic school up to eighth grade. As I went through my teen years, I continued to believe and attend church regularly with my parents. As an adult, however, I started realizing that there was more to the world than what I had known, and, slowly, my mind expanded. I met new people, learned new attitudes, and became less fearful of the big world and started owning it. Getting over God was a milestone for me. By the time I was in my mid-twenties, I had considered myself Agnostic. Only a short time later, I decided to stop hedging my bets and boldly considered myself officially atheist. It's the only explanation that makes sense to me.

What's on your mind? Fun or serious questions welcome.

If 3 strangers came to your house and their names were Sucess, Wealth and Love. And you could only invite one in.Who would you invite?

Well this is definitely a creative way to ask something. I might invite all 3, but since I'm limited, I guess I'll have to be rude to 2 of them.

Hm... Love I think I have already, and I'm okay with the amount of Success I've had so far (outside of luck with health problems, of course).

As shallow and disappointing as this may sound, I would choose Wealth right now. I'm not looking to be rich, I just want to ensure financial security for myself and my husband. Since we are both chronically ill with painful and incurable conditions, it would be most comforting for us to know that we would not have to struggle with working and bills when we need to rest. We could live the rest of our (quite possibly short) lives not trying to pursue the material things we need to survive. Instead, we could focus on being comfortable and enjoying what life has to offer.

Ask me anything

I Think I Fixed my Wagons

Since I was up since midnight this morning, I had some time to do some journaling. While writing, I pondered my "Wagons" problem and I think I've finally figured out my priorities, with subpriorities.  Here is the priority of things I'd like to do to improve myself.

1. Exercise
1. Stretching
   I need to get back on track with the daily stretching routines to keep my muscles loose.  If I don't stretch, my myofascial trigger points will likely act up, causing pain and a cascade of other symptoms (including these sleepless nights).
   
   
2. Strength Training
   Once I am able to do stretches regularly again, I'll start adding back some of the isometric exercises and concentrate on building up lost muscle.  My scale measures body fat percentage and it's gotten very high - 33%. 
   
   Muscle atrophy is definitely contributing to my weakness, fatigue, and pain, as well as my slowed metabolism, fatness, and some lowered self-esteem, I'm sure.
   
   
3. Endurance TrainingOnce my muscles are built up a bit and I'm able to handle the strength training exercises, my next exercise goal will be to try to increase my tolerance for doing any activities.  At first, this will be walking and doing chores, but hopefully, some day, I might actually be able to more, like biking or maybe even play a tennis game or something. 
   
   This is a lofty goal for me right now, but it's good to have something to shoot for, right?  Besides, some of my fibromite friends are reporting to me that they are running and doing all sorts of things.  (Color me jealous!)  Of course, others in my FM-ily are on the opposite end of the spectrum, bedridden and on the brink of despair.  I am in the middle right now, and I am hoping that by putting this goal down in writing (and in public) that I remember to do what I can, while I can, to try to stay ahead of that worst case scenario that I fear may once dominate my life. 
   
   
2. Weight Loss
   Get back online at Calorie Count and start back up logging calories eaten, calories burned, track my weight, and work toward (gradually and responsibly) losing at least 10, if not all 20 of the pounds I gained since last year.  I'm going to concentrate on eating healthy foods and healthy amounts. 
   
   This site really is helpful, but I'm taking a break from all the detailed logging for the time being, because... well, I'm not ready to get on that wagon just yet.  Now, that doesn't mean I'm giving myself the green light to eat crazy amounts of crap!  I do enjoy all sorts of foods, but if I don't eat at least one vegetable every day, I instinctively start looking for them, just to help balance things out.  When you have a chronic illness, getting the proper nutrition from your food is especially important. 
   
   I feel like doing the calorie logging I've already done was like the practice, or training I needed to get a feel for the way I should eat and feel during the day.  The training wheels are off for the time being, but I'm still sort of doing okay, I like to think.  I'm just not making it a top priority (yet).  I put this goal below the others for good reasons.  It will be much easier to lose weight once some of my lost muscle mass returns and I'm able to exercising.  I also imagine I will be in less pain, thus less stress.
   
   
3. Reduce Medications
   I'm on a lot of meds at the moment.  Despite the number of medications I take, the fact that I've been flaring up pretty frequently and severely enough to interfere with my work and social life leads me to believe that some or all of them may not be doing what they should.  Why am I ingesting so many expensive chemicals into my body if I'm still going to be flaring all over the place? 
   
   Since I have decided to do as much research on my health conditions and medications as possible (so I can be primarily responsible for my health, with my doctor's assistance), I am also aware that there are many side effects and possible drug interactions or other problems associated with taking them.  Drugs.com is truly a great resource for researching all the possible information that exists on any medication, but if you're not ready for the scary bits, it can be a bit overwhelming.  I have to trust that my doctor understands all the precautions (dosage limitations, listening for new and relevant symptoms, etc.), but I am also not bashful about picking his brain about certain troubling drug combinations if I'm worried about them.  I urge you all to share any worries or questions with your doctors as well.
   
   
4. Stop Finger Picking
   Where did that one come from, right?  I'm stressed.  I also have obsessive-compulsive tendencies.  One of the ways I am expressing this combination of mental challenges is a terrible habit of picking at the edges of my cuticles and hangnails, and the rough skin around my fingertips.  The more picking there has been, the more tempting it is for me to continue, since the picking results in rough edges that heal up a little, and hurt less.  I'm noticing that the longer my nails get, the worse it gets.  I have also used tweezers and cuticle nippers, always with the intention of smoothing out or perfecting the surface.  But it never seems to work; it usually makes things a lot worse.  I have pulled and picked until I hurt and bled.  I don't understand why I continue doing this, but I have tried and tried to quit many times.  I know I have to.  It's disgusting and crazy!
   
   It's a strange, but apparently not uncommon habit, as I have discovered.  Band-aids are helpful, but so wasteful, and they are also very annoying, especially when they get wet.  I figure this goal is the last priority of these because I believe the stress from not having the above issues under control is greatly contributing to the underlying stress that makes me need to pick.  Hopefully, once I get to this final wagon, the final leg of the journey will be much shorter than it would be otherwise.

So there it is.  All my ducks are in a row and I'm ready to start my journey, one little inch at a time.  Slow and steady wins the race, right?  I'll keep you all posted on my progress.

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.

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Wagons

I'm sure this has happened to others.  January came around and I was determined to turn over a new leaf and improve myself.  This year, I'd really make a difference.  I would lose that extra 20 pounds I'd gained (did you notice the ladybug on my blog hasn't crawled much yet?), take charge of my health and figure out how to better manage my symptoms, do more exercising, get organized, and finally take steps to get going on a few big projects that have been on my mind.  I would be a better person and improve my health, looks, and self-esteem.  Why wait, right?  I knew it would certainly be a challenge, but not impossible for me.  I mean, ME - I'm a determined person, always looking for improvements, and I've got plenty of character.  I could surely get a few things going.

Of course, you know what's coming.  I tried to get on too many wagons at once.  Silly me - I set myself up for additional stress and problems by forgetting that I'm merely human.  We would love to think of ourselves as at least better than average, wouldn't we? 

I'm better than most.  I can handle this AND that... and that, and that, and ooh, let's throw in that, while I'm at it....

Oh sure.  Throw it on top of the pile.  Put it on the list.  I can do it.  I can do anything I set my mind to.  Ugh... hasn't Fibromyalgia taught me anything?  How could I have missed this one?  I have limitations.  Even "normals" have limitations.

So, here's what I've learned about all this.  When I get on a wagon, I'm on THAT wagon.  I can look at other wagons while I'm on one, and I can plan my transitions to other wagons, but I can't ride them all at the same time.  Once I get to my destination on the first wagon, I can transfer to the next wagon and hop on it for a bit.  Eventually, I will get to my destination, and the riding may be slow or bumpy.  

I am the driver of these wagons.  I've driven wagons before, but it's been a while.  I will have to account for a break-in period and get accustomed to my new wagon.  I may make some wrong turns or get lost, but eventually, I'll get back on track and make progress on my journey.  I will see new and interesting things along the way.  I will see some old friends and meet new folks, some helpful, some not so helpful.  The road may be smooth or bumpy.  If it gets too bumpy, and I'm not prepared, I may fall off the wagon, but the wagon will not ride off without me.  It will be there when I'm ready to get back on and keep going.  These stumbles will help me learn when to brace myself and where I might expect more bumps.  Each time, I will be better prepared than the last.  I will make slow and steady progress toward my next stop.  I'll journal about my trip and take pictures, so I'll remember interesting experiences.  I'll share some of my experiences with other travelers I encounter on the same roads.

I plan for real trips in great detail, choosing routes, stops, and any transfers.  I do my best to estimate the timing, with plenty of cushioning just in case of unforeseen delays and problems.  I also pack extra necessities, just in case.   I prepare for the entire trip as best as I can.  If I forget to pack something I need, I may be able to substitute by buying or borrowing things along the way, or find creative ways to make do without them.

Now, which wagon should I choose to drive first?  Sometimes, the most important one should come first, but sometimes it makes sense to make a shorter, easier wagon ride first.  Once I've planned my entire "journey", I can fine tune the details of which wagon is closest, a reasonable distance to travel, and how to get to the next wagon.  This is going to take some thinking.  I don't have all the answers now.  All I know now is that I need to think about what I want and plan this out before taking my progress seriously.

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If you could have perfect health, but only by giving up one of your five senses, which one would it be?

I thought and thought about this. I would not choose to give up sights or sounds - that seems too drastic. Touch is tempting with the fibro, but think of how lonely and weird that would be, especially if losing a sense of touch could make me fibro-free. It's like the gift of the Magi.

At first, I was going to choose my sense of smell to give up, since it seems to be so minor in a person's life, plus there are so many unpleasant smells that I could do without. Then I remembered that taste is affected by smell, and I would be losing part of taste as well as smell in one shot. That would kinda suck.

Ultimately, I decided, and this was a tough one, that I would lose my sense of taste to be perfectly healthy otherwise. I would not be able to taste my favorite foods, but I could still smell them. I love the smell of a nice, hoppy beer and always take a great, big whiff before my first taste of a new beer. Perhaps I would eat more healthfully (you know, eat to live, rather than live to eat) but not have to sacrifice the world of wonderfully smelling foods.

Ask me anything