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!

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.

Nausea Treatments

Recently, I'd had several days of moderate to severe nausea, costing me two days off my job, and plenty of discomfort and distraction besides.  

When it first hit me on Monday morning, I thought perhaps it was something I ate, but soon I realized that my husband ate exactly what I did, and he was doing fine.  

Then I reflected on any recent medication changes.  There was a change to my asthma medications a few weeks ago, but why would symptoms come on so suddenly and severely, several weeks after making the switch?  After several days of misery and trying to work, I called my allergist to see if I could get prescriptions for my old medications and switch back.  Due to phone tag and fibro fog, I had't actually gotten the chance to speak directly with the doctor and discuss anything with him, so the change never occurred.  After the weekend had passed, the nurse called back and asked about my status.  I was feeling a little more sensible by then, and retracted my request to switch back to the old meds.  I know my body doesn't like medication changes, even slight ones, so I thought I'd train my body to accept the new meds, rather than stir up trouble and possibly risk new symptoms to go through again.

For the moment, it seems that, whatever the cause, the nausea is now mostly under control, with some more typically minor waxing and waning here and there.

Last Friday, however, I saw my Fibromyalgia doctor (a neurologist) and asked him specifically about the nausea.  He told me that nausea is not a typical symptom included with Fibromyalgia, and wondered along with me about what could have caused it.  

Later on during the appointment, when I asked about B12 shots or nasal sprays and whether it was worth considering, I mentioned that I take a Super B-Complex supplement every morning after breakfast, along with several other supplements.  He said that B vitamins, specifically, can make him nauseous, so he takes his just before eating, which helps him.  I'm not sure why this is the case, but I can certainly try taking my supplements just before breakfast, rather than just after, to see if it helps.  So far, so good, I guess.  (By the way, he said I should be getting plenty of B from my supplements and food and shouldn't need injections or special sprays or anything.)

He also gave me some other helpful information about how to treat nausea.  

Although medical marijuana is not legal here in Illinois, he does know that studies have shown it to be effective for reducing the kind of severe nausea and vomiting that chemotherapy causes for cancer patients.  He also knew of several patients of his who have told him that the use it (illegally) and that it helps them, though it affects their sensibilities.  

Something I could do whenever I feel bothersome nausea coming on is use an acupressure technique that tends to help.  Basically, dig a couple of fingers into the middle of the underside of your wrist and firmly massage the area.  Either wrist works, or you can switch between both.  I am going to have to give that a try the next time I need it.

Lastly, he mentioned ginger as an effective nausea relief treatment.  You can take it in the form of ginger beer (yummy!), ginger capsules, or candied ginger.  He mentioned an Asian company called Dynasty that makes candied ginger and sells it in a yellow box.  I went to a newly opened Whole Foods after work last Friday, and spotted some candied ginger available in bulk, so I bagged a bit of it and bought it.  It's just plain ginger, in cubes, covered in cane sugar.  I tried one on the drive home - boy was it strong!  I couldn't imagine eating these as a snack, but as a treatment, I could see how the flavor could be distracting, at least.  I have yet to test their effectiveness on my nausea.

Armed with all this knowledge, I feel ready for the next bout of nausea.  Bring it on, FibroBeast!  You may have won the first few battles, but I'll beat you next time.

I understand that Fibro is similar to ME/CFS in some ways... How do you cope with the pain, exhaustion, & broken sleep? (ie. 3 hours sleep, waking every 10-50mins) What things make you happy & take your mind off your illness?

I wrote up my own Wellness Recovery Action Plan (WRAP), based on my observations of my symptoms, triggers, and treatments. I shared mine with the public here:
http://www.scribd.com/doc/18785920/Zouras-WRAP

It is difficult on the worst days, of course, but when I am up to enjoying friends or alone time, I can forget for a little bit. They key is to remember that there will be better days ahead.

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

Limitations: The Hard Reality of Fibromyalgia

Today would be the day that I would officially start my Wagon 1.3: Endurance Training.  However, I've had some setbacks and I don't feel that I've really made much headway on my previous goal of strength training.  It seems that when I do even the wimpiest of the strength training exercises, I activate some latent trigger point and flare up in pain.  In response, I need to lay off the exercises for a few days.  On top of the pain, last week, I dealt with some unexpected and unexplained severe nausea that cost me two vacation days of work.

I am not going to give up, mind you, just because circumstances have not been ideal.  I'd be a fool to expect that I could just suddenly overcome all my limitations because I decided to.  I do tend to forget my limitations, because I know there are things I used to be able to do (like daily exercising, household chores, etc.) before Fibromyalgia came and beat me up.  Now I'm unable to do things I used to do, and it takes significant effort to consciously remember that I can no longer do those things - at least not to the same extent that I used to, back when I was "normal".

Such is life with the FibroBeast.  I'm on a very short leash and pulling at it is futile.  I wish I could easily see the extent of my leash, but it's something that apparently seems to vary randomly.  I haven't figured out all the factors that determine how far I can go before I hit the limitations each time.  It almost seems the leash gets shorter each time I try, like Fibro is getting angry at me for my persistence.  

Should I appease the beast and stop trying?  Nahhh.

The Unpredictable Nature of the FibroBeast

Unpredictable get the best of you?

Oh my, yes.  I came across this blog post from a fellow chronic illness sufferer dealing with the unpredictable nature of her symptoms.  I sure can relate!  In addition to not really being able to plan a fun trip or event, I am now faced with the challenge of not being able to plan to be able to work on a regular basis.

I was out sick Monday and Tuesday of this week, due mostly to extreme and sudden nausea and abdominal pain and discomfort.  I am completely out of sick time for the year already, so I had to use vacation time for these days.  I was miserable and couldn't even work from home.  The previous Friday, I did work from home, unexpectedly, thanks to dizziness that prevented me from safely driving to work.

When I returned to work on Wednesday (still nauseous and in a plenty of discomfort), I knew I'd have to address with my boss the crazy, unpredictable nature of my illness and how it's been affecting my work.  I regret to report that I couldn't help myself from crying almost as soon as I started the discussion.  How embarrassing!  Here I was, talking about my job with my boss, blubbering like a child about my fears of losing my income and benefits.  I was powerless against those damned tears!  I tried to hold them back, but they overcame my efforts.

Although I worried the worst (that he was considering firing me for my absenteeism), he reassured me that he values my work (when I am able to do it) and that he has absolutely no intention of getting rid of me.  He was very understanding and handled the awkwardness that I inadvertently created.  The plan was to brainstorm a few job modification ideas that could accommodate me better.  These were things I never imagined would be available to me, so just knowing that he would consider so many options was greatly relieving.  We would regroup in a week or so to decide on the options we could agree on and move forward.   

The lesson I learned here is that I shouldn't assume the worst, but rather open a discussion and pursue the truth.  Worrying about stuff that won't happen is a waste of my emotions.  I am lucky to have an understanding boss and to work for a company that realizes the value of my remaining employed despite having to make special accommodations for people like me.  Thank you, kind employer!!

Have you had to make any special accommodations to be able to continue working with a chronic illness?  If so, please comment and share the strategies you have tried.  Tell us what worked and what didn't work.  I came into that conversation not realizing there were any options available at all, so it may help others to share ideas from real experiences.

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. :)

Serratus Anterior Trigger Point May Be the Reason My Back Hurts

After researching and digging to try to find a reason for my stabbing, mid-back pain on my left side for the past month, I think I may finally have an explanation that makes some sense.  In addition to Fibromyalgia, I also have Chronic Myofascial Pain, which is associated with those trigger points.  Trigger points are muscles that, when knotted up, tend to refer pain to other areas in the body.  Sometimes referral pains are not very logical, so it's easy to forget that trigger points might be the culprit of some problems.

The muscle that I suspect is causing pain for me the past month or so is called the Serratus Anterior, which is located under the arms.  

When I learned of this muscle, I tried massaging the faulty muscle on my left side.  I was surprised to find that breathing and movements hurt less while I was applying gentle pressure on the spot.  However, it's a difficult position to massage oneself, as the other arm gets fatigued quickly.  I told my husband about it and he rubbed it for me a bit, which felt good.  I'm now focusing my heat wrap and intermittent rubbing (as I can) on that spot, to help the pain under my left shoulder blade fade away.  

I hope to do more focused stretching on the spot as well, to help prevent this problem from occurring again.

I think I may want to get The Trigger Point Therapy Workbook as a future reference, since it came in so handy for me on this issue.  (The drawing above is from the book's website.)  I'll keep you all posted on my progress with this pain.

Do any of you have this book?  Has it helped you?  How do you handle trigger point pain referral problems?

Costochondritis

I thought I'd mentioned this before, but I didn't find it in my blog posts.  I think I might be dealing with Costochondritis.  Here is another fine page about Costochondritis.

Looking back through my journal and blog entries, it seems the stabbing pain in my back, on the left side, has been going on since at least early March - almost two months now.  Before that, I had stabbing pains in the right side of my front ribcage.  The slightest movement seems to cause the pain to increase, including breathing.  The deeper the breath, the "louder" the pain gets.  If I sneeze, even just once, the pain is aggravated for hours or days.  It seems to make progress between sneezes, but with allergy season upon me, I can't keep the sneezing down very well.

Readers, if you've been diagnosed with costochondritis, tell me how you were diagnosed and what you do to treat it.  I see my doctor in a couple of weeks, but I'd like to know if he'll be able to help me, or if this will be yet another one of those conditions that just gets chalked up to Fibromyalgia with no possible treatment options.

Wagon 1.2: Strength Training

I've been busy working on my little self-improvement plan, as you may recall from last month's post "I Think I Fixed my Wagons".  

I gave myself a full month to get on Wagon 1.1: Stretching. I'm trying to re-establish my daily habit of stretching each morning.  One of my pitfalls is that, due to hypermobility, and probably also due to my personal tendency to be a perfectionist, I tend to stretch too much, which, in turn, causes me pain for days or even weeks following.  The pain, in turn, prevents me from doing stretches because I'm afraid to hurt myself further.  With all this in mind, I've been dutifully doing my little stretches each morning - sometimes more, sometimes less, depending on how I feel.  After a month of this, I think I'm ready to move on to the next mini-wagon, which will focus on building back my lost muscle mass.

I've started mixing in a few of the isometric and other exercises that help with muscle tone and strength already, so I know I can do them.  I wrote down a few, to remind me in case I get fibrofog.  Among them are these:

• Place palms together and push both arms together, resisting motion
• Hook both hands together in front and pull arms apart, resisting motion
• Put hands on forehead and move head toward hand, resisting motion (repeat on sides of head and back of head)
• Put hand on lap, in sitting position and move leg up, resisting motion (repeat for other leg)
• Wall push-ups at a slight angle (I can increase the angle as I get stronger)
• Use the wall as back support and slide down to sit on a pretend chair
• Leg squats

I did some of these after stretching this morning.  I am going to give myself another month to get this new habit going and see if my muscle strength starts to return a bit.  I am expecting some soreness and setbacks from overzealous days, but I hope to do better in the long run.

I'll check back in another month to report on my progress and embark on Wagon 1.3: Endurance Training.

If you could go on vacation for the next month with an unlimited budget, where would you go?

Ooh, that's a tough one! I long to return to New Orleans, and I'd love to get there by train. The airports are ridiculous these days. French Quarter of New Orleans has awesome food, booze, and people, all in walking distance. Since I'd have a whole month, I could explore outside the Quarter and visit some of the surrounding areas and explore new things in Louisiana.

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

MaryAnn, Our Neighbor

I was out touring our yard and cleaning up the branches from our rain garden this morning, because I couldn't resist.  Anyway, when I was done with the branches, I came back to the corner and looked around a bit.  To my surprise, I noticed our elderly neighbor came out her side door and walked toward me.  I said "hi" and thought she might have something to say to me, but all she wanted to do is fill her bird bath, which happens to be right on the other side of our fence, next to her birdhouse (which is frequently occupied by non-native sparrows).  So, I jumped in and introduced myself to her and try to make nice with her a bit.  That's how I learned her name was not Mary, as I thought, but MaryAnn - she corrected me.  She knew my name was "Bonnie", since that's how I introduced myself to her husband when we first moved in.  I also made an effort to shake her reluctant hand and smile.  It was a genuine smile, as I was pleased for the opportunity to finally speak directly with her after five years of living next door to her.  She remains indoors about 99% of the time.

After the niceties, I bravely asked her what she thinks of our yard.  I didn't want to assume she loathed it as much as her late husband, especially since I had her right there at my disposal.  She jumped in with a "no" and a slightly soured face.  "It looks like a buncha weeds - to me," she said.  She further explained that it's nice for "out in the country", waving her hand toward the west and looking out as she said this, but not here, right next to her "nice grass", meaning her own sterile landscape, which, unfortunately, is the norm in my neighborhood.  I bit my tongue, validated her opinion, and explained a bit about our Native Suburbia project and our goals.  Not surprisingly, she didn't care about natives or biodiversity or anything about our project's goals, because in her mind, this type of landscape simply does not belong in suburbia.  Old as she is, I'm not surprised that she couldn't be swayed on this point.

I maintained my polite and understanding demeanor with her, to keep the dialog open.  As a last ditch effort, I pulled out the big guns and asked her if she's noticed more hummingbirds and butterflies in the neighborhood.  Her face loosened up slightly.  I could tell she was surprised and intrigued.  No, she has not seen hummingbirds.  Her daughter, who does live in the country, gets hummingbirds and she's seen them there, but not here.  I informed her that we have several species of plants that attract them, and that we get lots of them each summer.   I told her to keep an eye out this summer for hummingbirds, as they love our hyssops and columbines.  I also asked her to notice the many butterflies that visit.  (I didn't even go into the milkweed/monarch symbiosis, as I thought that was too much for today.  Plus, I think hearing "weed" would throw her off.  What an unfortunate common name the milkweeds have for native plant awareness.  But I digress.)

As our brief conversation ended, I stepped away and tried to stay cordial, adding that I didn't want there to be any hard feelings between us. She could not confirm that this was the case, but at least she hesitated a bit so she wasn't completely a dick about it.  Besides, I'm hoping the relationship will soften while she ponders the conversation later, on her own.  I'm also hoping that every time she sees a butterfly or hummingbird, she'll think of our yard and how we made this possible for her.

I take this conversation as a win.  I didn't want to shut her down completely, because I knew that I could appeal to her, as a woman, by mentioning the undeniably beautiful points of interest in having a yard like ours - hummingbirds and butterflies - and hoped to rely on her avoidance of social awkwardness and requisite friendliness.  She's obviously been influenced by her late husband Ray, who, as you may recall, had nothing but harsh words for us and hatred for our River Birch tree.  And I assume that our tree is not dropping its branches in a strange pile 20 feet away from it in our rain garden all by itself; she or her relatives are most definitely behind this stupid behavior.  However, I am glad that she listened to what I had to say without cursing me out and being uncivilized, which is more than I can say of Ray.

NFA 2010 Walk of FAME: Fibro Fliers

I have signed up for the 2010 Walk of FAME because I want to “Make Fibromyalgia Visible” now!

In honor of National Fibromyalgia Awareness Day (May 15), I plan to participate in and raise funds for the Walk of FAME in order to support ongoing research and programs for fibromyalgia.

The National Fibromyalgia Association develops and executes programs to improve the lives of people living with fibromyalgia worldwide.

The Walk of FAME is hosted by the NFA on May 15 and by other dedicated groups around the world at other times on or around National Fibromyalgia Awareness Day.

Together, we hope to “Make Fibromyalgia Visible” one step at a time.

View my page or my team’s page and current donation status and please make a donation (in any amount) by clicking the Make a gift! link.

Thank you!

Up, Down, Up Again...Wee!

Aren't the cycles of chronic illness just SO much "fun"? ;)

Anyway, since I'd left you all with a downward trend, I wanted to report that I'm moving back upward again today.  Despite the ongoing back issues and seasonal allergies kicking in (which means more sneezing, which means more back pain...), I do think I'm doing better - at least today.

My back seems to be healing up, slowly, whatever the problem was.  I am also sleeping better, which is great news.  I've noticed more tiredness and morning issues, but I believe it's related more to the seasonal allergies draining me and drying out my throat during the night.  

Last weekend I (finally) visited with my parents and my niece, who also has Fibromyalgia.  I gave her a bottle of my Magnesium Malate, since she is most likely deficient and it may help her with her symptoms, too.  I sure hope so.  I wish I'd remembered about my mom needing Magnesium, too, since she has Type 2 Diabetes and this is one of the conditions I'd read about also needing magnesium supplements.  I may have to send her some as a surprise.

In other news, I'm noticing some weird dynamics going on between other family members and me.  I want to call it a snubbing, but I'm not quite sure.  The people in question are not like me at all, so it's possible they are just different and I'm not comprehending their behavior.  Assuming the worst, however, my theory is that there is a problem with my atheism, and possibly some other of my personal opinions or lifestyle choices (being child-free has also been a point of contention) and they either don't know how to express themselves, or choose to be passive-aggressive about it.   Either way, it's quite childish.  I wish people could muster up enough balls to bring up things that bother them and discuss it like adults.  People are different and I try to accept them they way they are.  Why must others keep trying to change me?  

Anyway, it's their loss.  I'm an awesome person, so they're missing out.  I'm just glad my parents got over their fears and confusions about me and love me regardless.  They are always warm to both me and my husband and welcome us frequently to visit with them.

Thank you, Mama and Tata for loving me the way I am.  I love you, too.  Don, Annette, and all my other understanding friends and family members, the same goes to you, too.  I appreciate you all!

Oh What a Night

Well, wouldn't you know it?  The very day I declare things are improving for me, I start feeling shitty again.  

I developed a headache while still at work yesterday and it progressed into a monster migraine overnight.  I woke up about a thousand times last night, just to feel the pain in my head.  Of course, after waking up, I also got to feel that peculiar back pain - you know, that spot on the left side that kills when I sneeze.  Each time I woke up, I felt the need to flip over to the side (or other side) but first I had to deal with my back hating every second of the movement.  In anticipation of my back screaming at me for moving, I'd first try to adjust a bit by stretching out my ribs.  (I've been doing this for the past few weeks, hoping for that *click* in the sternum or back or wherever in the chest/back area so the pain will feel slightly better for a little while, but it's never enough.)  Anyway, flipping over hurt my back and my head was just looking for a different side to be touched by the pillow.  I'd sleep for a short time and have to do it all over again.  What a shitty night.

I have way too much to do at work and can't afford to recuperate at home (again), so today ought to be "interesting".  I just hope the Aleve helps the headache, the way it usually does.  Come on, Aleve!  Wish me luck.  :P

What's Better with Me & Magnesium

We, chronically ill folks do a lot of focusing on the things that go wrong in our worlds.  I think it's time to address what's actually going right, despite my health problems.

Firstly, I've noticed that the tinnitus has improved recently.  My ears are not "ringing off the hook," as I like to say, the way they used to for weeks on end.  I had a very hard time hearing and concentrating with all that racket in my head.  I also worried, however illogical it may be, that the increasing instances and volume of the ringing meant that I would eventually progress into a single, solid, ring - deafness, essentially.  I would hate to miss out on all the great sounds I am able to hear now.  Having sustained a concussion, along with having Fibromyalgia, I'm not exactly certain why the tinnitus got so crazy, or why it's better for the moment. 

Next, my migraines have finally calmed down enough that I'd forgotten a bit about them.  Several weeks ago, they were coming and going so frequently I might just consider them one, long migraine with off and on pains.  I blamed them on weather changes, hormonal fluctuations, and some other factor that was the straw that broke the camel's back and triggered them.  

Another problem I'd been having for weeks on end is an underlying nausea.  I blamed the meds and supplements.  I take lots of both of them every day and can only imagine I have a bunch of little pills sitting around in my stomach after taking them.  I take my supplements right after breakfast, so they have a bit of a softer landing in my stomach, in the hopes that I won't be so nauseated.  Sometimes, though, I still have that awful feeling that I might have to vomit.  I've learned to recognize the "fake nausea" feeling - one that will not likely result in any vomiting - and distinguish it from the "real nausea" feeling - one that gets progressively worse until some vomiting is done.  The latter recently came with a terrible migraine headache, and I sure did puke from it!   

When I switched up my medications last February, it seemed the adjustment period affected many of my symptoms, including the quality and quantity of my sleep.  There were a couple of completely sleepless nights, and many nights of only half a night's sleep or less.  However, today, I feel that my sleep has finally improved for the past few weeks.  I'm taking Sonata instead of Ambien, because the Ambien seemed to keep me sleeping far too long in the mornings.  I could just blink and start dreaming in the mornings, but in the night I was still kind of wide awake until the drug kicked in.  With the Sonata, however, it seems the morning "hangover" is not a problem for me any more.  (Of course, this morning was an exception - I felt so sleepy, but I had a full night's sleep.)  My body is finally adjusting to all the medication changes and able to sleep.  It's lovely to be able to sleep again.

The pain in my upper back on the left side is finally starting to feel better, although I'm not quite through with it yet.  Each sneeze sets me back with excruciating pain that lasts several hours all over again, but after those episodes (I had one last night) I seem to be doing okay with it.  It's there, but it's diminished.  I'm still not sure if there is or was a crack in my ribs, but with my FM pain amplification, I wouldn't be too surprised if it was simply a minor muscle issue.  Perhaps a pulled muscle in a specific spot, between a couple ribs is causing this problem.  At any rate, it seems the treatment for either of these is pretty much a wait and see thing, especially if it's not an emergency situation.  I'll continue to wait and see on this.  Hopefully I won't be sneezing too much. For some reason I can't get away with a single day without at least one or two sneezes, but at least I'm not dealing with all the allergies or a cold, like my poor husband is right now.

I would like to claim that taking the Magnesium Malate twice a day is helping me with these and possibly other symptoms.  I've been on it for months now - perhaps it's finally making a difference.  I've been researching magnesium recently and there is a lot of relevant information about it, especially with relation to various health problems, including: Asthma, Migraines, Fibromyalgia, Diabetes, various heart problems, high blood pressure, Epilepsy, Autism, ADD & ADHD, various digestive disorders (including IBS and Crohn's Disease), Multiple Sclerosis, and Premenstrual Syndrome.  

I can only wonder why magnesium supplements are not the first order of treatment for all these health conditions!

My guilty pleasure, a daily spoonful (or so) of natural peanut butter is also adding to my magnesium intake as well, along with a healthy fat to help my body absorb it, too.  I also like olives and olive oil, avocados, and salmon, which also contain healthy (unsaturated) fats.

Certain conditions deplete magnesium in the body, causing a deficiency and further problems.  Calcium supplements usually include some magnesium as well, to help you absorb the calcium.  Calcium is apparently an antagonist, which means that if you have too much of it in your body, your magnesium levels get lowered, so I also stopped taking the calcium supplements recently, as a little experiment to see if the magnesium I'm taking could be put to better use in my body and help alleviate some of my symptoms. 

I am no doctor, but I know that I'm most responsible for my health, so I do research on my own and do my best to interpret and apply it, with the help of my professional medical team.  Nobody is going to care more about me than my own self and I don't expect anyone to.  Everyone has to look out for Number One before they can help others.  Do your homework and see what works for you.  

I share whatever I learn with my readers, so they can start thinking about the things that might be helpful for them.  Use those search engines and definitely discriminate based on the motives of the writers.  If they are trying to sell me a product, I move on to the next resource. 

If you have any information you'd like to share, please feel free to comment and provide your links.  I'm eager to learn how best to take care of myself.

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.

Dyslexia & Dyscalculia

I've been accidentally flipping numbers around at work like mad lately.  I'm finding myself spreading "sorry"s all over the place because I keep referring to the incorrect reference numbers in messages. 

What's up with this? I've never been plagued with dyslexia as a kid.  In fact, math was probably my best subject through high school.  (I aced every year, including the AP Calculus I took in Senior year.)  I can only wonder if this is yet another way my concussioned and fibrofoggy brain has decided to vex me.  With the supposed ADHD affecting my concentration, should I consider this number flipping an extension of that problem?

During my self-analysis, I found this interesting term and article: Dyscalculia. Particularly, I notice "Dyscalculia can also occur as the result of some types of brain injury."  Under the symptoms listing I also notice difficulty with judging time, which I have also noticed in myself lately (or for all I know, maybe it's been going on for years now).  I also noted in my journal recently that I had repeatedly noted the right side, instead of the left side, had been bothering me lately.  Repeatedly.  Who gets left and right confused as an adult?  I guess it could happen to anyone. 

I could be reading too much into this.  I'm one of those kind of people who tries to be vigilant, but sometimes ends up being neurotic.  That's all a matter of opinion, though, right?  Can you relate?  What's your feelings on this?

Feeling Barfy

I don't know if I have enough to say to justify this post, but I have been sliding back into a terrible flare up for the past week now.  There is a pain that started in my upper, left back, near my shoulder, about a week ago.  It felt like a really bad trigger point knot, so I worked it by leaning against the smooth, rounded corner of our fridge, trying to loosen it up.  I may have done either too good a job or not good enough, because the pain has changed and spread to the entire vertical back on the left side, and around to the left side, under my arm, especially when I breathe.  The pain is like a soreness (which makes sense from the pressure I put into it) and a sharper, knife-like stabbing pain that prevents me from taking full breaths because the pain increases as I breathe in.  I believe all this pain (along with my meds and supplements) may be what has been causing me to feel nauseous much of the time, which is not fun, either. 

I'm getting crankier by the minute and I don't know if I should just let it happen (the bad mood) or resist and play nice, so I don't cause more relationship problems with people.  I have remained as calm as possible for the past week, even managing to enjoy some distractions here and there.  Yesterday, however, while other issues pressed on and added to the stress pile, I let a few tears go.  I hate the crying.  It feels like a weakness, though I know it's part of the human limitation to have to cry at terrible crap once in a while.  When I cry, what little sense I have left is out the window.  I can try to talk myself out of it, but it doesn't go well.  Don tries to help me cross that river of despair, too, but it is infinitely more difficult to understand and deal with under the duress than afterward, when my logic starts to come back to me.

Fibromites, how do you handle the more devastatingly painful times when the last straw finally breaks the camel's back and you feel the tears of pain well up in your eyes.  Do you have any tips or tricks that have helped you?  I've been looking at my little caterpillar magnet and remembering and knowing that I will have better days, but this pain is really testing me.

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.

Beercation 2009 - Photos!

The Fibro Frog strikes again!

I'm so sorry, dear readers.  I recently realized that I'd neglected to share the link to all the photos Don and I took on our Beercation (beer + vacation = beercation) during the very end of 2009.  I see that I posted a little something about it, but the photos were not uploaded at the time.

Well, without further ado, here are all the photos, with my captions added. 

Beercation 2009 Photos

I hope you enjoy them.  As always, feel free to comment, either on the photo pages themselves (via Picasa Web by Google) or here, at The Table.

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

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.

I Will Have Better Days

I've been inspired by my own recent flare to create this very meaningful reminder that "I will have better days."  It's a photo of a very teeny, tiny monarch caterpillar that I took in my yard one day, as he munched on the leaf of one of my common milkweed plants.

This little critter was so small, (roughly this small: ====,) I could barely see its characteristic stripes.  Luckily, I was out looking for monarch caterpillars that day, looking under milkweed leaves all over the yard.  It was slightly breezy, which made for quite the challenge to photograph my little friend using my tripod and macro lens, as the plant swayed in and out of focus.

This photo is the result my hard work and determined effort, so it's a very personal reminder for me.  However, any of my fibromite friends, or anyone dealing with any chronic illness or difficulties, may find having this little reminder around helpful.

Just think: Each butterfly starts out as a teeny, tiny caterpillar that munched, hid, and survived until it was time to fly!

I'm going to make sure I order one of these and keep it in plain sight, so I won't lose hope during my next fibroflare.