Challenges in the midst of blessings

What are your favorite childhood memories?  Are there reoccurring times you remember fondly?  Did you have a fort in your backyard?  Did you go to camp each summer?  Did you go skiing each winter?

Photo Credit: caribb via Compfight cc

Photo Credit: caribb via Compfight cc

Yesterday morning we were blanketed in 11 inches of white.  The entire day was spent living in a beautiful snow globe.  This morning we woke to another 12 inches on top.  It’s truly beautiful.  Even more so because I no longer have to leave the house on days like this now that I’m a stay-at-home mom/grandma/trophy wife.  (I like the trophy wife the best, except when my son reminds me that everyone gets a “thanks for playing” trophy these days.)

Where was I?  Ah, yes, snow!

These multiplying inches bring back great memories of playing outside when I was a kid.  Growing up in Michigan usually meant snow in late November/early December that remained through February.

We lived on a dead end road and the snow plow would push a glorious mound of white playground and leave it three feet past our driveway.  We spent hours as kids digging holes in that mountain, climbing to the peak, and sliding back down on our bellies.

Having fibromyalgia has changed winters in Michigan for me.  By this evening the temperature will be -40 with the wind chill factor.  (That is extremely cold, even for these parts, and we haven’t seen this much snow at one time in quite a few years.)  It hurts down deep in my bones.

Saturday my daughter and I shared the shoveling duties.  I was having a pretty good pain day and my husband was helping friends move and my son was battling the flu.  That left all the scooping to us girls.  My wrists and shoulders are still sore today but the job had to be done.

Despite the aches and pains, I really enjoyed getting outside in the snow.  I bundled up more than usual and shoveled a few scoops into a pile and then stood to watch my breath leave me like a cloud of smoke in the midst of falling flakes.  Trying to remember to P.A.C.E. myself!

The best part of being out there was the memories replaying in my mind.  As kids we played outside until we were called in to thaw.  We’d drink some hot cocoa while our gloves and boots dried over every heating vent in the house.  Once our noses had turned from bright red back to their normal color we’d venture out again!

I think sometimes in the midst of our illness and the pain it can bring we need to stop and remember life before.  Not to make us sad or angry at our current state; but to be thankful for what we once had.  Each phase of life has its blessings and its challenges, its comfort and its pain.

I always try to remember there are so many that are so much worse off than me.  Not to sound pious but I’m thankful I have fibro when it is compared to a number of other illness or diseases.  I’m thankful for the strength to shovel some days when there are so many that cannot leave their bed, home, wheelchair, etc.  I’m thankful for the warm house that was waiting for me when so many are out in the cold this winter.

So today as I’m hoping this flare caused by the shoveling is on its way out, I’m trying to remember that it was caused by something I’m able to do that so many others are not.  The challenges in the midst of blessings.

Stay Well! ~ Live Joyfully!

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POST CHRISTMAS MESS

Here we are.  Monday again.  Not just any Monday, the Monday after Christmas.  Our family had our last Christmas gathering over the weekend.  My sister and her husband will head back south tomorrow morning.

I look through the house I’ve been wanting – no, needing – to get organized and I find it a disheveled mess.  The holidays are so hectic we normally aren’t able to keep up.  Then throw fibro/chronic fatigue in there and you find yourself doing just enough to survive.

My fake pre-lit tree did get put up but remained undecorated.  Yes, we had a bare tree this year – call the North Pole on me.  That has to be a huge tradition violation.

But with a 17 month old in the house it wouldn’t have been decorated for long anyway – at least the lower half.

We concentrated on the birth of the Savior and time together as a family – watched some movies and ate too much.

Next year will be better!  I’m adapting fly lady’s holiday control journal to work for those of us with FM/CFS.  But for now I’m left with this year’s mess.

So we go back to keeping the P.A.C.E.Keep up theP.A.C.E.

I think the most important thing to remember is to get back to healthy eating and staying hydrated.  Try to keep up with the daily chores and when energy and pain levels allow spend a few minutes on the mess.  If you let the daily chores go so you can do the Christmas undecorating your daily routine will suffer and you’ll get all out of sorts.  It will add to the stress and thereby increase your pain.

So turn the Christmas music on if you need it and watch a few more classic movies.  Whatever you need to extend the holidays until you can get the undecorating finished!

Stay Well! ~ Live Joyfully

Let’s Go Grocery Shopping!

Come on! Let’s go grocery shopping together!
Believe it or not – that phrase no longer blankets me with dreadful anticipation.
I mentioned how my husband came up with the acronym P.A.C.E. (Prioritize Activities to Conserve Energy). I decided it was time to conserve some energy in one of my most required, but hated, chores. Grocery Shopping.

Photo Credit: TheeErin via Compfight cc

Photo Credit: TheeErin via Compfight cc

It’s one of those necessary evils; but to someone with FM/CFS it can seem like an insurmountable challenge. By the time you’ve gathered your thoughts, decided what you want or need to buy, made a list, and cut any coupons, you’re way too tired to go to the store. Then once you get there you have to keep scanning your chicken scratch of a list that isn’t in any sort of order. The noise and activity happening around you can send your thoughts spinning; making you forget the two things you didn’t write down because you just knew you’d remember them.
I’ve tried different things throughout the past few years; switching up the routine by planning one day shopping the next. I’ve even purchased the preprinted shopping lists, but they didn’t have all the things I like to keep on hand.
I finally decided to break the whole food gathering process down into parts and see how I could make this reoccurring nightmare a bit easier.
A few weeks ago I made a spread sheet on excel; listing the items we purchase most often under the aisle number I believed they were in at the grocery store. Each time I went to the store I’d revise my list. I moved items around until I had them all under the right aisle. Then I arranged the list in the order I walk through the store. I normally start at the back in the dairy department and end the trip with produce in the front.
I printed a stack of these lists and have them hanging on a clipboard in my pantry. It works great when I’m in the haze of fibro fog; serving as an easy check off guide for things we need. I take the list, scan the pantry and check off anything needed there; then the bathroom supplies, laundry supplies and kitchen supplies. It takes the memory work out of the process on the days when my brain has decided to take a vacation.
I have a small coupon organizer that’s also arranged by aisle number. That way I can just grab the few coupons for that aisle as I walk down. (Next week I’ll share my easy couponing method.)
There are items on this list that assure we can make a few quick meals on days I have no energy or time. Things like spaghetti, grilled cheese, chicken stir fry, soups, etc.; also a number of spaces to add things that might be on sale that week or we need for a special meal.
I’m sharing this spread sheet with you because it’s helped me so much. Grab it and change it up to match your store and the items you like to have on hand! I hope it takes some stress off your shoulders as you handle your shopping!

Here it is!  shopping list
What are your shopping secrets? I’d love to hear them. Sharing our best ideas with each other is what helps our FM/CFS community grow stronger and lead our best lives possible!
Stay Well ~ Live Joyfully

Become a critically-minded, well-educated patient

Where do you get your information about your illness? What resources have you used? Internet? Books? Medical journals? Now, where do they get their information? The sea of resources we have available to us can be quite overwhelming. It’s imperative that you learn how to be a bit critical and well-educated as you search for knowledge.
BOOKS & ARTICLES
Some of us go the old fashioned route of paper and bindings. Do a little research on the author. Are they known for the products they’re trying to sell or are they a noted doctor in the field of fibromyalgia or pain management? Proceed with caution when reading medical books from an author who has a list of products to sell under their name.
INTERNET SEARCHES
Have you heard of google scholar? I might have been living under a rock all these years because I had never heard of it until this week. If you google “google scholar” you are taken to a search engine that is simply research oriented. You can then search for “fibromyalgia studies” or anything you desire. You can even get as specific as you want such as “fibromyalgia studies using ribose”. You’ll see a brief description of the article as well as the date it was written. Watch for recent studies; at least in the past five years.
Watch the suffix of the website. Anything that is .edu is from an educational organization like a school or university and you can normally look at those as reliable sources. The .gov sites are federal, state or local government sites and are highly regulated. Non-profit organizations are .org and are usually reputable. The .com’s are commercial sites and can include people trying to sell products; be skeptical when looking at these. (Keep in mind that these are just generalities. For instance the Mayo Clinic is highly reliable but is a .com)
 RESEARCH STUDIES
The first thing to find out is who was studied. Did they use the current diagnosing criteria when choosing their participants? If they didn’t use up to date standards they aren’t going to be getting beneficial results. You also have to be sure they have a control group that excluded patients with similar illnesses or illnesses that have similar symptoms. For instance, if they are trying to study the benefits of yoga on fibromyalgia patients they may want to exclude people with lupus and rheumatoid arthritis. They would also want to exclude people who are currently under any type of litigation that concerns their illness. Those individuals could be biased in their disclosure of how the treatment affected them.
How many people participated in the study? You’re sure to have a more accurate study by having more participants. Just including ten people isn’t going to be as good as a study that included 4,000.
Where did they go to recruit participants? If it was a pain clinic that provided all the participants; their results may be skewed because they’re studying only those at the worst end of the spectrum; as opposed to those that are out functioning at a higher rate, such as holding down full time jobs etc.
Who were the researchers? Most researchers have a bias regarding what they expect to find. If I think Tai Chi has benefits for fibro patients I’m going into my research study trying to prove that I’m right. Look for well-known researchers in regard to pain and pain management. Those individuals that have dedicated their careers to helping people in pain are more likely to hold their commitment to sincerely help people above their desire to be right.
Who funded the study? Most medication studies are funded by pharmaceutical companies. They’re in it for the money. They are conducting the study for the sheer purpose of getting their drugs on the market.
Was the study double-blind placebo controlled? A double blind study is where neither the person administering the medication or the patient knows if they were given the placebo or the actual medication. Sometimes this is very hard to accomplish. Certain drugs can have such prominent side effects that the patient becomes pretty certain they were given the actual medication.
Has the study been replicated? The only clear way to know if a certain study showed beneficial results is if you are able to replicate it. Medical journals are quick to publish the newest, greatest findings in medicine. The only problem with that is they rarely publish studies where more researchers try to replicate a particular study and are not able to come up with the same findings.
PLACEBO AFFECT
I’m sure you’re aware of placebos being used in research studies. That’s where they may give a certain drug to half of the participants and the other half would basically be given a sugar pill. In order for a drug company to claim that a drug is affective for a certain disease it simply has to work better than the placebo on the tested individuals. In general 35% of individuals will show positive results during a study even though they were simply given the placebo and were never given actual medication. Therefore, the placebo affect is generally 35% or so of those studied. As an example, let’s say after a research study has laid out all their results, 32% of those given the placebo felt better; compared to 41% of those that were actually given the drug. The drug company can now promote the drug to the FDA as beneficial to patients with that illness. That could actually mean that only 9% showed benefits from the drug since 32% felt better by simply thinking they had ingested the medication.
There are actually other placebo studies that don’t use medications. They have done studies on the effects of acupuncture on individuals and had a control group that actually had a placebo treatment. The tubes containing the needles simply suctioned cupped to the participants skin without the needle penetrating. Believe it or not there have also been placebo surgeries. For instance, while studying the benefits of a certain surgery on carpal tunnel they may have volunteers that don’t know if they are actually having the surgery or not. Those in the placebo group simply receive an incision that mimics that of the actual surgery. They get their stitches and are sent home thinking they had surgery.
BEWARE OF LABELS
A study or information source can use the word “significant” very loosely. It can simply mean important or it can mean the effect of a certain treatment was merely above 0. Look for resources that actually disclose a percentage rate. If they don’t, that could mean their results were beneficial in only .05% of those studied and with those findings they label it as a significant benefit.
So I hope this helps you become a more critical, well-educated patient. After all, the most important advocate for your health should be you!

Stay Well! ~ Live Joyfully!

Fibromyalgia’s Ugly Step-Sisters

In case you haven’t met them yet, or you have and didn’t know they were part of the family; I thought I’d take a moment to introduce you.

1.  Foggy Fran

–          She’s the one that interrupts you’re thoughts.  When you’re in mid-sentence she’s going to slide into the conversation and make you draw a blank.  While focused on a task she’s Foggy Frangoing to jump in and grab your train of thought and run away with it.  We aren’t positive where she comes from.  She may be a result of the pain – you know, it’s hard to focus on a conversation if someone is stabbing you in the thigh with a knife.  Or maybe she comes around after a few of the other girls (depression and fatigue) have been visiting for a while.

2.  Fiona Fatigue

–          Oh Fiona.  I think I dislike her most of all.  Before getting out of bed in the morning she’s there; grabbing your energy supply and running off like a toddler.   She jumps up for a piggy-back ride so as you walk through the day you’re carrying her weight as well.  Each step twice as difficult as when you were healthy.  By lunch time the added weight has you feeling like quite a zombie, dragging along as you walk.  Sometimes she ties anchors to your arms and legs and leaves you immobile.  Then the catch 22 begins; too tired to move = not being able to move = stopping you from exercising your muscles which would give you more energy.  She often leaves you with a sore throat, headache or other illness that comes back time and again.  Horrible child that Fiona is!

3.  Isabelle Insomnia

–          As a child we were scared of the boogie man living under our bed.  Well, Isabelle stays there.  She runs in and hides before you get under the covers with the shear goal of keeping you awake all night.   She’s very aware of your sleep cycle; all 5 stages and the 90 minutes it takes to run through its course to get you to a restful, restorative sleep.  While you’re in stage one your muscles and brain are still active.  In stage two your muscles are supposed to relax and only your brain keeps going.  That’s when she lets all the bed bugs loose to crawl up and down your legs so that you can’t stay still.  Once stage three hits, you should be experiencing gentle waves taking you deeper into sleep.  But she’s there.  Whispering in your ear to keep your mind active and tapping on your arms and legs to keep your muscles alert.  If you even make it to the restorative stage five where you can dream, your body can repair tissue and illness damage, and your body releases serotonin to decrease pain; she won’t let you linger there long.  She gets vicious and starts to punch you in the arm and talk out loud until she has you fully awake.  She’s pure meanness.

4.  IBS Iris

–          She’s the potty talker of the group.  Test after test will prove there is nothing wrong with your intestinal tract.  She, however, she sits with her voodoo doll of you and squeezes your stomach to cause you pain.  She will constipate you one day and make you run like the wind to the bathroom the next.  She keeps you bloated and irritated.  You don’t tend to talk about her much; we like to keep her hidden from everyone we know.

5.  Tonya TMD

–          She has a vice grip, this one.  Tightens the joints of your jaw, neck and facial muscles.  She is so frustrating.  The thought of her makes you grind your teeth.  She doesn’t do much else; but she’s competent at her job!

6.  Paula Painful Bladder

–          Iris’ twin.   Potty talker.  She’s the one that makes you feel like you have to pee even though you just did, and causes pain and irritation in your plumbing.  She usually wakes you during the night, stepping in on Isabelle’s territory.

7.  Dana Depression

–           She’s always there.  Sometimes in the background.  Sometimes making a grand appearance.  She gets in your head to remind you of the life you once lived and all the things you’re missing out on.  Her happiest days are when she can get you to stay in bed and talk about all things gloom and doom.  If you try to tell her of all the things you can still do to have a happy, productive life, she goes nuts screaming at the top of her lungs.  Reminding you of all the would have/could have/should haves of a healthy life gone sour.

There you have it.  There are a few other cousins in the bunch; but these seven tend to stand out above the rest.  The hardest job you’ll ever have is keeping them in control!  Praying you have the strength to contain them!

Stay Well ~ Live Joyfully!

Reporting On My Last Session For The Clinical Study On Fibromyalgia

It’s damp and chilly here in the Midwest.  That means I feel the pain in my bones today and the heating blanket will be my best friend.  My grandson is down for his nap so I thought I’d fill you in on what happened Wednesday at U of M where I’m taking part in a clinic study on Fibromyalgia.

The group I was put in is basically informational; talking about studies and answering questions about our personal problems with fibro.  This stuff is pretty clinical, so hang on.  Here’s a run down from this week’s group discussion…….

Genetically speaking they have found that first degree relatives (you, parents, children, siblings) have an 8 times greater chance of being diagnosed with FM/CFS.  They have found out several genes that influence stress and pain are more prevalent in FM/CFS patients than in those without.  An example is Catechol-O-Methyltransferase (COMT) which is an enzyme involved in how we perceive pain.  FM patients have a 25% increase compared to those without FM.  These genetic studies can be quite complicated since there are 18,000 genes in the body.  It’s kinda hard to know what ones are affected by what; it’s a lot of stuff to rule out.  If the gene damaged or is the brain not reading the genes code properly.  These medical journal publications tend to print the new and exciting finds, but unless those studies can be replicated repeatedly and consistently you can’t be 100% positive.  What happens then is that if another study is performed and they get different results you may never read about that in a journal because it isn’t new and exciting.

Environmental causes are also being investigated and have been found to play a consistent roll.  Over 50% of people with FM can tie the diagnosis back to an accident, illness, injury or extreme stress.  Even more; 20% of people who have a severe neck or back injury will later be diagnosed with FM.  So did these environmental things actually cause fibro or are we genetically predisposed to the condition and these environmental occurrence just bring out the illness to a full blown state?  They jury is out on this one still!

Testing for peripheral causes such as muscle damage, inflammation or damage in nerve tissues have been ruled out.  They have, however, seen a decrease in oxygen in the tissues but it’s hard to determine if that’s a cause or a symptom.  Does that cause the tired feeling in the muscles or is it caused by lack of exercise which patients tend to back away from because of the pain it will cause?  It can be quite a difficult call to make.

When you think of the two nervous systems in the body you can put them into two categories.  The peripheral system which is how the nerves transport pain signals outside of the brain and spinal cord and the central nervous system which is contained in the brain and the spinal column.  Evidence shows that the central nervous system responds differently in patients with FM.  Through functioning MRI’s they have found that when a FM patient is presented with pain a different part of their brain reacts than a patient without FM.  (I’m really glad I wasn’t part of that study and I’d like to know just how they caused pain in the patient!  I can imagine it was not a fun day for them!)  But this is one of the first actual diagnostic tests that is proving a difference in the brain functioning of a Fibro patient.

There are certain “gates” throughout the spinal cord.  This is where the pain signal is received at the spinal cord from, let’s say, your finger getting hurt.  The signal that pain is going on in the finger is sent up the spinal cord to the brain and the brain then send a signal back down the spinal cord to the “gate” and tells the gate to close or how open it should stay.  So if you just poked yourself a little, the brain tells the gate to go ahead and close because that little poke was no big deal.  Well, in fibro patients they are finding that those “gates” remain open; all the way.  This is making the central nervous system work overtime because the signals keep being sent up and down the spinal cord.  Eventually it becomes hard wired.

It has long been thought that FM patients had a lower level of endorphins in the system than a healthy patient.  You know, those are the little guys that are the feel good chemicals in your body.  Surprisingly, it’s the opposite.  They have found significantly higher levels of endorphins in FM patients.  Which means the brain is releasing the endorphins to counter act the pain, however the central nervous system isn’t reading the levels properly and allowing the endorphins to do their job.

Another thing I found interesting this week is that we have an ability in our bodies called DNIC.  Diffuse Noxious Inhibitory Control.  This is the pain pathway that tells what level a certain pain is in our body and can allow sensations at other parts of our body to diffuse the initial pain area.  Um, let me word this so it makes sense – a runner after a marathon will have pain in their legs, they have learned that you can pinch your upper lip so hard it hurts and the new pain in the upper lip helps to diffuse the pain in your legs.  Kinda spreads it around.  Well I bet you can’t see this next line coming – that system is not working efficiently or at all in patients with FM.  So don’t bother even trying next time your legs hurt – if you pinch your upper lip you’re just going to have another pain all together and your legs will still hurt just as much.

Have you ever heard of something called a pain wind-up?  Well if you’re a fibro patient you have problems with this too.  They took lab rats (real rodents, not the human kind of lab rat) and they repeatedly scratched at their tails.  Well what is supposed to happen is that their little rat brains are supposed to send a signal down to the tail and tell it, ok, this is gonna keep going so go ahead and shut the gates a little and ignore that scratch as a little irritation.  Well in fibro patients that scratch just continues to increase in the amount of pain perceived.  It keeps winding up.  Along with this is something called Substance P.  It works as a neurotransmitter in the brain and keeps the pain responses going.  Fibro patients are found to have 3 times as much as a healthy patient.

So let’s just sum up everything I heard Wednesday; in practical terms.  We all have a volume control in our little brains.  Our brain and spinal cord work to turn the volume up or down throughout our day.  Guess what!  If you’re a fibro patient your volume control is all the way up.  Some days it’s turned so far up that certain things that don’t cause pain in healthy people will cause pain in you; like lights, loud noise, smells, clothes touching the skin; anything that is a stimulus.

So after all that depressing news I left feeling pretty good.  I mean, there are still people out there that don’t believe FM is a real illness, disease or whatever you wanna call it – and they think it’s all in our heads – well, they’re right.  It is all in our heads; our brain and our spinal column.  All in all these findings are good.  It’s showing actual physical proof that can be detected through testing which is bringing us closer and closer to finding treatments that work.  And I find that an encouraging thing!

Stay Well! ~ Live Joyfully!

Reflection on 31 Days of Good News

I thought I’d take this 31 Day blog challenge as a way to develop a habit of blogging more often.  Once I decided I’d commit to the challenge I had to pick a topic.  It sure didn’t take me long to figure out what I wanted to write about.  I wanted good news; almost to the point of a need!  I was tired of politics, national debt, news stories of murder, kidnapping, corruption; it can really be enough to drive a person into depression.

As someone who lives with chronic pain that lends itself well to depression and a feeling of just being “down” I was able to truly see the value in searching for the good in the world each day.  You can spend an evening watching the local news, CNN or FOX NEWS and it can really bring an already rough day down a few notches.  I needed to turn up my faith in humanity!

I really didn’t expect the impact it would have on me.  For each of the 30 stories I wrote about there were probably another four that I came across each day.  Some of the stories made me tear up, some of the stories inspired me.  But most importantly it gave me the job of looking at the good still in the world.  I wish our news broadcasts told more of the positive.  I think it could honestly rub off on people and inspire them to great deeds of kindness as well.

Thanks for following along this month  – stay tuned, I don’t think we’ve seen the last of the good news stories!

Stay Well ~ Live joyfully!