Warmables Cherry Pit Packs: Love.

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Blogging with Fibromyalgia (and Other Illnesses)

Look back in my blog posts and one thing will be clear: there is no consistency.

Anyone with a blog will tell you, this is the number one rule of having a successful blog: keep the posts coming to get traffic and get people coming back to your blog!

Here's the thing.

I'm sick.

Have you noticed the name of the blog? It's FIBROconfessions. Not Mommyconfessions or Healthyconfessions (sorry if there are blogs out there by those names), but FIBROconfessions.

That means I'm sick.

Which means that a lot of the time, I not only don't have the energy to write a post, but it is excruciating to do so. 

The ideas are there, swimming around and jumping off diving boards into lovely ponds of sleepiness. But the body is simply too limiting.

With that in mind, I'm considering doing video posts instead. You'll be able to see me in all my latex-free, alternative soap-using glory. I'll still type when I can, but who knows how often that will be.

Less painful for me, and perhaps less eye strain for you, yes? It's a plan. Which is just a suggestion for anyone with chronic illness, right? :)

My Pain Scale

This.

Hugs Hurt Sometimes

Today my hubby had the day off, and I had a phone call for Medicaid. So we were both up around the same time. He stepped over to give me a hug.

I couldn't stop the tears from knowing how bad it would hurt.

Being the loving husband that he is, he started to move away. But I needed the contact, and sobbed for a moment in his arms.

I wonder how much this hurts him. I know it does.

Sure, chronic illness is hard on the patient. But it's hard on the loved ones, too, and they need as much support as they can get!

What's Wrong with Me? A Detailed List of My Diagnoses

While I primarily focus on blabbering about my diagnoses of latex allergy and fibromyalgia, I have a number of other related- or not related- issues. The following is a list, some of which I am no longer suffering from but have dealt with at some point. If you'd like to know more about my experiences with any of them, please do let me know. I'm happy to share!

Surgeries:

• Appendectomy 
• Sinus surgery
• Laparoscopy with laser
• D&C
• Cryocautery
• Kidney stone surgery
• Hysterectomy

Diagnoses:

• Fibromyalgia
• Migraines
• Restless leg syndrome
• Periodic limb body movement syndrome
• Narcolepsy
• Insomnia
• Hypersomnia
• Depression
• Anxiety
• Hypertension
• Raynaud's syndrome
• Dysmenorrhea
• Adenomyosis
• Ovarian cysts
• Osmotic diarrhea
• Irritable bowel syndrome
• Asthma
• Nausea and vomiting
• Kidney stones
• Dizziness/vertigo
• Psoriasis
• Sprained ankle
• Broken ankle
• Ulcers (caused by NSAIDs)

Allergies:

• Latex
• Penicillin
• Doxycyclines
• Excedrin Migraine
• Mold
• Trees
• Grass
• Ragweed
• Candida
• Dogs
• Smoke
• Cockroaches (ew!)
• Bandages/Adhesive
• Wheat
• Rice
• Soy
• Garlic
• Lettuce
• Cinnamon
• Corn
• Coconut
• Bananas
• Cucumber
• Cashews
• Black pepper
• Raw tomatoes
• Spandex/Lycra/Elastic
• Chlorine
• Shampoo
• Conditioner
• Body wash
• Deodorant
• All soap with the exception of 3 bar soaps
• Perfumes
• Lotion

Tests:

• Blood (lots)
• Allergy (multiple types)
• Endoscopy (lost count of the number)
• Colonoscopy (don't recall how many)
• Arterial blood gas
• Methacholine challenge
• Many more

If you're wondering why in the world I just shared my medical record with the world, there are multiple reasons:

• It shows others with similar problems that they are not alone (could be you!).
• It provides a glimpse into my background and some context as to where I am coming from.
• It probably makes anyone with fewer issues feel better (though many are worse off than I am). 

And the #1 reason why I shared?

             ... drumroll pelase...

I can't lose it!

So You Think Fibromyalgia Is Fake?

Chronic Illness and Relationships: A Series

Recently I've had to take a good hard look at my relationships with both family and friends as a result of hateful, hurtful verbal attacks. I refer to these as attacks as I have simply not responded to these uneducated, ignorant remarks. As a result, I've decided to start a series of posts discussing the issues anyone with chronic illness faces when it comes to relationships.

I've also started looking at what the Bible says regarding these sorts of things. Before you decide to dismiss these posts since I am approaching this from a Biblical perspective, not every post will be filled with Bible verses. While I feel very strongly about my faith, I also respect those of other viewpoints. Even if you think the Christian faith is a bunch of bologna, you have to admit there are some great kernels of advice in the Bible.

This series will be quite personal, but I believe that the chronic illness community needs more people who are willing to be authentic about their situation and failings, as well as the stark reality of living with illness. Many of the topics and situations I discuss will be applicable in other situations as well, and hopefully will provide anyone who doesn't suffer from an invisible malady a glimpse into our world.

Since this is a very broad topic, I'll open it up to you. What do you want me to address? What issues/problems are you having?

Confession #4: Sometimes It Seems Like More Pain Would Help

Some days I hurt so bad that I think that it would actually help to cause myself more pain. This seems to be more common on days when I have a migraine. On those days in particular I think that hitting my head against the wall would actually help the pain. Would it? Of course not!

Why do I have these thoughts and urges? I've never acted on them, of course, but what is the rationale in causing oneself more pain intentionally? I tried to find information about this, but the only thing I'm finding is in regards to individuals that are severely depressed.

Perhaps it is simply my mind attempting to come up with a distraction to the pain, no matter how ridiculous. I have no desire to actually hurt myself, I just want the pain to stop! Unfortunately, on my worst days, the only solution to the pain is to take medicine that knocks me out and sleep all day.

Do you ever have these thoughts and impulses? What do you think the cause is?

Moving with Chronic Illness

We are moving! I don't know when, but sometime! Currently we have about 1700 square feet of space. While it's not stuffed with furniture, I do have a bunch of junk and stuff in the garage and a storage room. That is.... I did!

Since I can't remember when we decided to move, I can't tell you how long ago it was that I started preparing for it. A month? Two months? Let's settle on 6 weeks.

So 6 weeks ago, we decided that we simply needed to start over financially. Get out of our house which we can't afford to take care of and find a place with low rent and utility costs. At this point I pulled out a binder and filled it with notebook paper, with a week-by-week list of what I should be doing to prepare for moving. I also listed what needed to be done in each room before we moved.

Did I follow the plan? Of course not! (Remember the blog plan? Ha!) BUT, it has helped tremendously. It got me into the mindset of getting rid of things we don't use, such as the rocker recliner no one has sat in for 5 years. In fact, we have a car full of items to go to the consignment shop, and I still have so much stuff to get rid of that I started a Facebook page to sell things!

Not only are we getting rid of clutter, we're making a bit of money. Money that will pay for deposits and moving expenses.

Now before you think you couldn't possibly do this, I used to be a bit of a hoarder. Not one of the intervention- requiring ones, but the type of person that saved all sorts of things "just in case." Well, "just in case" either never came or when it did, I couldn't find what I had kept because it was buried with so much other unnecessary junk!

As a result of this realization, I retrained my brain. If I keep so many thing for a rainy day, then can't find them because of all of the other rainy day items, I'm doing nothing but causing myself problems!

There is, of course, a good deal of items that won't sell. Things that I would feel guilty asking for money for, and these are going on Freecycle and the free section of Craigslist. It's amazing what people will take off your hands if it's free! Off the top of my head, two non-functional TVs, a small broken chest freezer without the door, a ginormously tall wooden pole, an old side table that's falling apart, lots of paint.... and much more. So keep this in mind if you need to get rid of something that you would otherwise have to pay to dispose of.

The moral of the story is to pace yourself and accept the bad days in with the good. And always remember, if you commit to do just one thing every day (even if it is just rinsing off a dish), you did something and the day wasn't a total and complete wash-out.

What are your favorite moving tips?

Fibromyalgia and Your Spouse

This is one post that I'll be saving to come back to. Despite all the other things to go wrong (almost everything), and when it seems like everyone else is against me, I know that my husband is always right there by me.

We've fought tooth and nail, and have only grown closer since the lowest point in our marriage. We give each other the right to take a stinking break and decompress from the stress that is our lives. Illness certainly throws a wrench in a marriage, but so does life in general. It's a fight, either way. But in most cases (definitely not all) it's a fight that's worth every ounce of energy.

It took throwing around the "d" word once when we were both at our wit's ends, but we fought through it, fought for each other and our marriage. We both realized that even though life isn't so fun being together, it would be unthinkable apart. Sure, we call each other jerkbutts every now and then and argue til we're blue in the face sometimes, but the one good thing about fibro is that I generally forget what I'm mad at him about, and then we're fine!

In the grand scheme of things, how much of what you and your spouse argue about really is something that you're even going to care about in five years? Very little. And throwing in some silly names like "eyeball face" in the middle of a disagreement certainly doesn't hurt.

Fibromyalgia E-book Round-Up

So while I was fiddling around on Amazon.com today, it occurred to me that I hadn't really searched for ebooks on fibro. After thinking about smacking myself upside the head and deciding I didn't have the energy, I found some ebooks that look quite interesting. I haven't read any of these yet, but I will keep an eye on them and cross my fingers that they go free soon! When they do, I'll be sure to post!



I Hurt Like Hell: We Have All Heard of Fibromyalgia, Now Hear It from Someone Who Lives It Every Day

*giggles* I'm into this book just because of the title. OK, so it's not really funny, but if you just read the first four words, it kinda is.






If You Have to Wear an Ugly Dress, Learn to Accessorize: Guidance, Inspiration, and Hope for Women with Lupus, Scleroderma, and Other Autoimmune Illnesses

This one isn't all about fibro, but again, the title makes me giggle. And we all know that giggles are good!








Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome

I can relate to this face...





There are more that look either entertaining or helpful, but I'm cold. Off to microwave some water for a foot bath, cross your fingers it won't give me a hot flash!

Now that you've browsed my completely random, unscientific selection of ebooks on fibro and related fun, are there any you'd recommend?

I'm Hot... No, Wait, I'm Cold... Nope, I'm Hot

Today was one of those days when I think I just may be going insane. The temperature relation system (or should I say irregulation?) in my body was acting like it went on holiday to Spain. Granted, I didn't feel incredibly wonderful overall as far as the fibro went, but wow the temperature swings!

Yes, I just may have invented a new term. There are mood swings, so why not temperature swings?

I woke up at a normal temperature. Then I was hot. I asked the hubby if he had turned up the heat. (Nope.)

So I drank some cold water. That was much better.

Then I started moving around again and got hot, asking my husband if he had turned on the oven. (Nope.)

More cold water down the pipe.

Oh my word I'm cold. My toes are numb. My nose is like an icicle.

I curl up under a blanket and drink some red vanilla rubioos tea- or something like that. It was delicious with my local raw honey. Mmmm....

I'm even colder still. My teeth start chattering. I tell my hubby I'm going to go upstairs and try to warm up. It takes me 30 minutes. Maybe more since I don't seem to have any concept of time these days.

On my TempurPedic mattress, which holds in heat, with my fleece hat on, wearing flannel pajamas, under a super thick comforter, with the heating pad on high and three (yes, three) cats piled on top of me, I start checking out the ebooks on my iPhone. And then I start thinking about how much I want to use the berries in my freezer for a tasty smoothie....

After a few hours, I finally emerged from my cocoon without any permanent damage, aside from the hurt looks from a few sensitive felines that were pushed aside. And then I realized that I hadn't eaten all day. *sigh* Who says I don't do anything all day? I'm dealing with being me, darn it!

Have any tips for dealing with temperature control issues? Please share!

Confession #2: I Forget

Starting back up with the confession theme, I forget what my confession was going to be. Seriously.

So, in that light, confession #2 is that I forget. A lot. Not just the normal, everyday, where-did-I-put-my-keys forgetfulness. I don't remember most of the past winter.

I'll say something, then repeat it a few minutes later. Thank God those around me understand, and they do tell me that I just said it. Otherwise, I wouldn't have any idea that I repeated myself.

Entire serious conversations are just gone with wind. It's like they never even happened in my world.

How Do You Deal with Forgetfulness?

It isn't particularly enjoyable to be a 31-year-old with the short-term memory of a plant. But there are some steps I do take to try to deal with it:

1. I make lists. I've always made lists, but not for the same reason I'm using them now. I literally make lists for everything, and keep them in a red notebook just in case I misplace the notebook. It's red. I really can't miss it. I also keep a couple lists on my phone, but most of them are written.
2. I ask for help. There is no shame in asking others to help you remember something or to remind you. In fact, your loved ones might be concerned that doing so would upset you. Let them know that you really need and want the help.
3. I write it down. One of my most effective study methods in college was writing things down. That's primarily how I learn. So, if there are important things I need to remember, I write them down. Granted, I still forget a lot of stuff, but I'm much more likely to remember something if I've written it down at least once.
4. I let myself feel. I get mad. I get sad. I get frustrated. I accept that. I know I'm intelligent. I remember tons of things others don't- things that are in my long term memory pile. Just because I can't remember what I said two minutes ago does not mean I'm an idiot.
5. I keep trying. I try to keep up on interesting research, play word games online, write on my blog, and even have the occasional intellectual conversation. Giving up and letting my mind rot is not going to make it any better. 
6. I laugh at myself. If I could remember an anecdote, I would share it, but I can't remember any right now! It really can be quite funny. Sure, it's sad and frustrating, but some of the things that come out of my mouth these days must be written by the writers from The Big Bang Theory. It's that funny!
7. I try to fuel my mind. Green tea, flaxseed, dark chocolate, and other foods rich in antioxidants, polyphenols, or Omega-3s can only help.
8. I use my iPhone. Yes, I love that thing. I use the alarms and timers on it daily.

What Is the Cause of Short Term Memory Loss?

In my case, it could be any number of things. Allergic reactions can cause severe memory problems, and it seems I'm always having some sort of reaction. My bestie, fibro fog, likes to hang out with me as much as she can. Anti-depressants and other medications can cause memory loss. And last but not least, sleep deprivation, sleep disorders, and lack of sleep can really screw with the brain. 

If I can remember a funny story, I'll totally share. In the meantime, what's yours?

My Thoughts on Disability

A couple months ago I finally gave in and applied for disability (it may be longer, my memory is fuzzy). I've fought against doing so since I was first diagnosed at the young age of 14, but between the fibromyalgia, sleep disorders, and pain from ovarian cysts, at the time I was awake maybe 3 hours a day, tops.

Unless you are diagnosed with something life-threatening, such as cancer, generally you can expect to be denied when you first apply, which I expected. I didn't expect to be angry when I received the first denial letter about a week ago, but I was.

After I saw the letter, which I fought my husband to look at since I was allergic to it, I glanced out the window. There was my neighbor, standing on his porch and smoking. Don't misunderstand me, I'm not a judgmental person. And my neighbor has always been very respectful, never smoking on our property. He's really a wonderful neighbor and has been helpful when he hasn't had to be.

But last year he was placed on disability through his work for having a very limited lung capacity. This is all due to his choice to smoke all these years. What does he do now? I don't really know, aside from an active social life, but I do know that he smokes and drinks beer.

Here's my issue.

Why is it that an individual that causes their disability is able to obtain assistance so easily and quickly, without jumping through hoops and going to a bajillion doctors, while one who didn't cause their disability has to literally risk their life to (maybe) qualify?

Way back when, I worked in social work and saw this all the time. There are so many people living off the system, spending the money they receive in assistance on cigarettes and beer. People that have caused their disability rather than fought against it for years. People that continue to worsen it by refusing to modify their habits or lifestyle. People that get on disability so easily.

Some diagnoses are "recognized" and are thus much easier to get on disability for. Cancer, for example, as you can't argue with a scan. But those that are getting to be rather well-known, such as fibromyalgia, still usually require a fight. Physicians only know what you tell them, and if they don't document well, Social Security might suspect you are trying to cheat the system.

Even with excellent documentation from your physician, anyone with a chronic illness is only able to GET to the doctor's office on their better days. Very few people are able to vouch for their limitations, aside from the closest family members and friends. Yet it is these very people that may be considered biased.

It's a tough road in the first place for anyone with chronic illness. Fighting to obtain assistance from the Social Security administration generally makes things worse with the added stress. At the same time, there are so many scam artists out there that get disability when they are really just lazy.

What's the answer? I really don't know. I've tried to document as much as I can, and even kept a journal for a while of food, reactions, how I felt, what I did, etc. But that took my energy away from getting up and getting something to eat. My husband has been incredible through all this, but he certainly do all that he already does PLUS a diary for me.

What's been your experience with disability? Do you have any recommendations for me?

Rest

Noticing a trend? I'm obviously moving my old posts over here, but this one grabbed my attention and made me laugh. Sometimes I'm such a dork!

Remember all those wonderful plans I had? A daily plan! A weekly menu! All sorts of priorities figured out! Plans are good. So are memories!

Here is a round-up of the week thus far:

Attempted to cook, but couldn’t stand to look at food.

Attempted to eat some junk food, but it was gross too. Possibly gained 10 pounds just looking at it.

Slept all day Monday thanks to the weather. (Bad pain days always mean sleep.)

Was invaded by ginormous house flies.

While trying to make homemade sticky fly traps, almost set the kitchen on fire. (Thank you Lord for a functional smoke detector!)

Ran around with a spray bottle filled with water and a few squirts of soap, spraying at flies and windows, using all reserved energy.

Woke up to… no buzzing! Well, some buzzing, but lots of dead flies!

Called housekeeping services. Repeat. Repeat. Repeat. Repeat.

Glared at dead flies. Stared at laundry. Pondered dishes. Stuck up nose at toilet.

Went to the ironically named Dr. Hack. Forgot the words to tell the receptionist why I was standing in front of her.Set up more tests.

Sneered at house that smelled like smoke.

Thanked God for the gift of rest and peace in the midst of chaos.

Kickin' Some Fibro Butt... Even When You Don't Feel Like It

Fibromyalgia is a nightmare. We all know that. Everyone has their opinions on what you should and should not do, most of which are bunk, regardless of intentions. What works for me may make you feel worse, and most people don’t get that.

When “they” say it’s all about attitude, I must agree that it is partially true (but only partially). I went to a psychiatrist for 7 years, learning pain management, stress control techniques, and how every stupid little choice I make can effect me for the next week. (And lots of other helpful stuff.)

Personally, I’ve always felt that I need to be productive. Every day. Even Sundays. Most likely a result of growing up in the country where there was always work to be done, if I give in to the monster of my body and don’t do anything, I know I’m making a huge mistake. It’s all part of my fight against fibro and the associated depression.

Rinse it off, rinse it off, wayyyy off!

Every single day, even the days that I sleep almost all day, I choose to do one productive thing. It literally could be as simple as rinsing off the dish I just ate off of, or brushing my cat. But by golly, I did something. Take that, fibro? How do you like that? Huh? Huh?

Playing the Theme from Rocky in my head sometimes helps, but if I’m thinking about going to bed (like I did today), I know that sunshine always helps me out, so I tell myself I’ll go outside for 10 seconds. Generally those seconds turn into minutes, and when I come back inside I’m refreshed enough to at least do something besides screw up my sleep schedule.

So get up. Get a bit of sun. Rinse off that dish. And let me know- what do you do to kick some fibro butt?

Acceptance

Another old post, but still a goodie, and oh so relevant. I find myself going through this now with this stupid latex allergy.

Anyone without health problems most likely will not understand this post, and will likely consider it overly dramatic. But, unfortunately, chronic medical conditions are dramatic to those individuals involved. Let me assure you that I am far from a drama queen, but life isn’t always as easy as one would hope.

A diagnosis of fibromyalgia brings all sorts of confusing feelings. Relief at finally obtaining a label for your problems, panic at knowing it doesn’t have a cure, concern about how it will effect your quality of life, you name it, the feeling is there. It seems that for most sufferers, myself included, the five stages of grief are experienced. Granted, no one died, and you aren’t dying. But a part of your life has died, and for that, it’s perfectly normal to grieve. No one experiences the process in the same order, intensity, or period of time, but generally, it goes a little like this:

1. Denial and Isolation: “I HAVE FIBRO WHAT????? I CAN”T POSSIBLY HAVE THAT! Test me again. It has to be something else, something with a cure…. go away. Leave me alone. “

Followed by more self-isolation where you simply don’t want to talk about it, yet it seems that everyone else does. After all, this can’t possibly be it. (Personally I skipped this step, but I was only 14, and little was known about it at the time- and no one had heard of it!)

2. Anger: Reality sets in. “It’s not FAIR! I’m a good person! I want to help people. I want to help animals. I only want to do good in the world. Why did you allow this God? WHY ME?”

Seeing as how I was a teenager when I was diagnosed, life already seemed unfair. My parents were always protective, but became all the more so once I was finally diagnosed, ensuring I followed all Dr. orders regardless of what I wanted to do. Naturally I lashed out at them (bless them for their patience!) but I also was furious with God. My dream of being a veterinarian that took care of children’s pets while she sang… was now in jeopardy. I knew God was supposed to be good, but how could this POSSIBLY be a good thing? For goodness sake I read my Bible, prayed every day, and tried to follow Christ’s footsteps- why would He allow this?

I’ve returned to this stage a number of times over the years, but have learned that if I don’t get angry, I get sad, depressed, and spiral into the vicious cycle of fibromyalgia and depression. So, for me, anger can be a very GOOD thing- especially considering the alternative.

3. Bargaining: “I’ll read my Bible more. I’ll pray an hour every day. Just make it go away. Deal?”

No deal. Others may wonder “if I’d only gone to the Dr. earlier,” “maybe if I get a second (or third, or fourth) opinion….”

This lasted about a week for me. My mom helped a lot in getting through this stage. More about her another time. 

4. Depression: “What if I never graduate college? What if I can’t get married? I can’t do anything anymore. My life is over. No one understands. I hate school (due to my peers at the time). I’ll never amount to anything, and I’ll have to live with my parents forever. Who would ever want to date me?” Oh, the thoughts.

And then the guilt over thinking and entertaining these thoughts! It wasn’t until I was in one college Bible study that I learned that I don’t have to claim every thought I have. Just because a thought enters your head doesn’t meant that it is YOUR thought! There is so much FREEDOM in that! There are thoughts from God, and thoughts from Satan…. so if a thought isn’t from God, say “get behind me Satan, that’s not my thought!” and move on. Granted, it’s easier said than done, but just because a thought comes in on your river of consciousness doesn’t mean that it has to dock! Just let it float right on out. (OK, so this last part was from my years seeing a psychiatrist.)

Yet another stage that comes and goes, and must be fought on a daily basis. Remember when I said I get mad instead of sad? That’s a huge part of how I avoid depression. Despite the new Dr. now and then who has no idea that anyone with fibro will likely be indicated as depressed on any depression scale. Now THAT makes me mad. Ignorance.

5.  Acceptance: “Gotta make do. I need to be there for my family. I refuse to be a victim of my body. Just because I’m pain doesn’t mean I can’t do something productive. I can still make a difference in the world. I’m gonna kick some fibro butt!!!“

Most people will expect you to skip directly to this phase. “You have fibromyalgia? My (aunt, cousin, mom) has that. You should try ______ it works for her.” They will then expect you to immediately try their suggestion and feel better. In fact, you should feel better just knowing that something helped someone somewhere!

….whatever. Today, I’m at number 5, bordering on returning to number 2 as I am prepping for yet another procedure. Where are you at?

Is FIbromyalgia Over-Diagnosed?

In my opinion, fibromyalgia is becoming far too over-diagnosed. General practitioners, who are not qualified to do so, are diagnosing patients with fibro. “You’re sleepy all the time? Pain? You must have fibro.” Not so. This contributes greatly to the widespread belief that anyone with this diagnosis can still live a normal life.

I’ve even seen recommendations from random people online as to how to diagnosis a loved one with fibromyalgia. “Just look up the pressure points, press on them, and if it hurts, they have it.” WHAT? A specified amount of pressure must be applied to confirm the diagnosis. Press too hard and you can practically guarantee anyone would have a diagnosis, press too lightly and those suffering from a mild form of fibromyalgia won’t pass the test.

And guess what? As of 2010, the American College of Rheumatology has developed a new set of guidelines that do NOT include the tender point test, though many Drs. do not necessarily abide by them.  I agree with this as the new set of guidelines is based on the result of one study. Granted, there were over 800 participants, but one study doesn’t convince a scientific mind of anything until it has been replicated- and it hasn’t been! Besides, this new criteria only correctly diagnoses 88% of sufferers- a number I find too small to be reliable.

The new guidelines require widespread pain lasting at least 3 months, fatigue, cognitive symptoms (hello, fibro fog!), and lack of refreshment upon waking . Other potential causes must have been ruled out by relevant tests.

Here’s the thing with these new guidelines. We live in a “go-go-go” society. Anyone living in this mindset will undoubtedly get worn down over time. They will become stressed that they are more tired than usual, which will interfere with sleep. Seeing as how anyone that is sleep-deprived will begin exhibiting symptoms of fibromyalgia, these individuals can be easily diagnosed as having fibromyalgia under the new criteria, particularly if they are not straightforward with their physician or enough relevant questions are not asked. Even under the old criteria, I consider this a problem, but it is all the more so with the new criteria.

One study has indicated that over-diagnosis is indeed a problem. (We need more studies!!)Inthis study, the participants were either referred to a rheumatologist with a preliminary diagnosis of fibromyalgia by the referring physician, OR diagnosed by a rheumatologist at an initial visit. The diagnosis was correct in 34% of patients. That means that a whopping 66% of patients in the study were diagnosed with fibro- and didn’t have it!

Another study has examined the association between stress at work and new diagnoses of fibro. Guess what? It was found to be a contributing factor. Does it provide evidence that the “go-go-go” population is working themselves into a false diagnosis? Maybe. Maybe not. But it is something to think about.

An article in The Journal of Musculoskeletal Medicine also discusses the discrepancies in the diagnosis of fibromyalgia, and is an easier read than an actual study, while offering some excellent points. The authors point out that until a concrete set of diagnostic criteria are agreed upon and utilized, the possibility of a cure is unlikely. This tells me that we as patients need to do something. What is that something? I don’t know yet. I’m very open to ideas, though, so please share!

More Priorities

Don't you think this blog is pretty? No? Neither do I. It looks incredibly awful and I will be the first to admit it. But right now... it's just not a priority.

The result of a search for "virtuous woman." Hehehe!

In all honesty, I must admit that while I do want to help people, it's stinking hard to keep yourself  accountable when all you want to do is take a Benadryl and sleep... all the time. But is that what the Virtuous Woman of Proverbs would do? Definitely not! While Christ is of course my ultimate example and strength, it certainly helps to have a female role model. (But I bet she didn't have fibromyalgia and more additional diagnoses than she can count!)

So, while I hope eventually others gain hope and inspiration and all sorts of other warm fuzzies from this blog, right now I need some accountability- and this seems like the best option.

Two days into the routine and it's going OK, aside from the fact that the routines were not followed either day! However, the general routine was indeed followed, and considering that I'm still weak from some unknown illness, that's pretty good!

Repetitive movement = ow!

Yesterday morning two rows of the garden were planted (yay!) and today I did some much-needed laundry, while still getting some work done- yet another example of how anyone with fibro has to CONSTANTLY prioritize. (Yes, I needed clean clothes.)

Granted, this can make some relationships difficult. However, anyone who truly loves and cares for myself and my husband refuses to take cancellations personally and understands that this is simply how life is. Unfortunately, this sometimes means that family members and friends who we care for must essentially be "dumped." If someone makes you feel worse instead of better, they need to go. Fibro causes enough pain without stress- relationships that bring more negative into your life than positive will only make you feel worse.

I am again well aware that this post has gone far off topic, but this is what is on my heart today. Keep taking those baby steps!

Daily Schedule

Gotta start somewhere, and a daily schedule makes the most sense for me. I'm sure there will be some modifications as I go along, and some days I have to run errands and such, but everyone benefits from a routine, especially anyone with weird medical disorders!

So here's my initial schedule:

6:30-7:30: Get up (One my cats is my alarm clock, so no worries there.)

7:30-8:15: Stretch, Check garden (summer), Clean litterboxes, Shower

8:15-8:30: Breakfast

8:30-9:00: Get ready for the day, Check e-mail

9:00-11:00: Work

11:00-11:30: Load dishes and laundry, Filter water

11:30-1:00: Work

1:00-1:30: Lunch

1:30-2:00: Finish laundry and dishes

2:00-5:00: Work

5:00-6:00: Cook, Wipe counters and stove

6:00- 9:00: Free, Specific tasks, etc.

9:00-9:15: Shower/Bath

9:15-10:00: Take meds, wind down

10:00- Bedtime!

Since I used to have a strict bedtime routine, I decided to include that in my daily schedule. Not sure how I got out of the habit, but I definitely need to get back to it!

Notice that I'm not working more than a few hours at a time. Anyone with fibro needs to ensure they get up and move around on a regular basis or face stiff or numb legs.