The Return of the Routine!

Remember that good ‘ole daily schedule from way back when? It most certainly is NOT being followed in any way, shape, or form.

So, I’m going to try it again, working around bathroom time. (Didn’t you read my update?)

Naturally, I need to add a few modifications:

Work time will of course consist of my online work, but also any tasks related to getting latex the heck out of my house or whatnot.

6:00-8:00 pm will be sewing time, since I have to rip out any elastic in the clothes I’ve kept and replace them with a drawstring, make my own underwear (I am NOT paying $80 for a bra that may not fit!), and make all sorts of other clothes to replenish my wardrobe. Once I’m finished with my clothing, it’s on to my husband’s!

Starting today! (Nope, too late…)

Starting tomorrow! (Nope, I have a doctor’s appointment…)

Starting Thursday! (We’ll see how that goes!)

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The Latex List

And we’re off! While this is as comprehensive as I’ve figured out thus far, there are no doubt plenty of products containing latex that I’ve missed. I’ll continue to add to it as I find more things and continue to party with my latex allergy! (List of latex-free products to come.) Be sure to check the brand before you automatically ditch everything, as well as the product itself- yours just may be made of plastic or something else safe!

School/Office Supplies:

  • Erasers
  • Pencils with erasers
  • Glue
  • Clay/Modeling dough
  • Paint
  • Crayons
  • Chalk
  • Colored pencils
  • Markers
  • Stickers
  • Ink pads
  • Envelopes/Stamps- the kind you lick
  • Pens
  • Masking tape
  • Rubber grips
  • Rubber bands
  • Mouse pads
  • Telephones
  • Rubber cement

Electronics

  • Electrical cords
  • Remote controls
  • Phone chargers
  • Ear buds

Medical Items

  • Bandages
  • Latex gloves
  • Adhesive tape
  • Blood pressure bulbs and tubing
  • MANY other items- I only wrote down what was relevant to me

Personal Care

  • Razors (the lubricating strips)
  • Hair bands
  • Toothbrushes
  • Hair brushes
  • Feminine Products
  • Adult diapers
  • Ear plugs
  • Cosmetics

Crafts/Hobbies

  • Tool handles
  • Scissor handles
  • Bowling balls
  • Bicycle handlebars
  • Inflatable mattresses
  • Duct Tape (Regular)
  • Scuba/Swimming gear
  • Racquet handles
  • Fake flowers
  • Rubber stamps
  • Ribbon/lace/bias tape
  • Yarn
  • String
  • Calculators

Toys

  • Puzzles
  • Flexible toys
  • Old barbies
  • Dolls
  • Toys with rubber wheels
  • Balls
  • Balloons

Clothing

  • Elastic (even if covered)
  • Spandex (unless Lycra brand Spandex)
  • Underwear
  • Swimsuits
  • Pantyhose
  • Shoes
  • Slippers
  • Socks
  • Raincoats
  • Coats (with elastic)

Around the House

  • Suction cups
  • Pet brush handles
  • Stepladder treads
  • Pen nail clippers
  • Newspaper
  • Lottery tickets
  • Fitted sheets
  • Rugs/bath mats (non-slip backing)
  • Bath sticky grips
  • Shower curtains
  • Poinsettias, rubber plants, ficus plants
  • Rubber grips on broom/mop handles
  • Vacuum hoses and attachments
  • Binoculars
  • Cameras

Kitchen

  • Utensil handles
  • Drawer organizers
  • Canning seals
  • Can opener handles
  • Spatulas
  • Colanders
  • Sponges
  • Magic Erasers
  • Zippered plastic baggies
  • Drain plugs
  • Chewing gum
  • Cling wrap
  • Candy wrappers

Outside the House

  • Water hoses
  • Steering wheels
  • Tires
  • Vehicle floor mats
  • Gardening tool handles
  • Gardening gloves
  • Conveyor belts (such as in stores)

Construction Material

  • Carpet backing
  • Sheetrock
  • Joint compound
  • Weather stripping
  • Door seals

Catching Up

Indeed, it has been quite the long time!

The summer has been rather crazy. I’ve had gastrointestinal issues since February when I accidentally ate some wheat, and have had more tests than I count. Literally. I barely ate, was dehydrated once, and went to my mom’s house for a month so that I would eat.

Without a diagnosis, I referred myself to Mayo Clinic. I was quickly in and like a medical whirlwind, I was suddenly THERE. (More on that experience another time.) Two weeks of MORE tests, and I have a diagnosis! Osmotic diarrhea. And the cause? Unknown.

I have STUMPED Mayo Clinic. This is not a good thing.

Fast forward a couple weeks, and I suddenly have trouble breathing in my living room. Fortunately I grabbed Benadryl before my throat swelled shut. The culprit was a new garden sprayer- that’s the only different thing in the room. It had latex in it.

Woo-hoo! My latex contact allergy has now gone airborne! A few days later, I put two and two together and realized that a latex allergy can cause nausea, diarrhea, and vomiting. I’d already cleared out the latex medical supplies, but it’s become serious now.

I have pages full of things with latex in them that I need to get out of my house. The sheer magnitude of how much latex is used is unbelievable. Goodbye underwear, can opener, most of my closet, florist tape, shoes, ear buds, and pencils. (This is just for starters- I’ll post a list shortly with everything I’ve discovered thus far to contain latex.)

My prayers are that latex is the cause of my newest issues. While I feel ridiculous going through my house with nitrile gloves on, I know it’s necessary as I’m breaking out in hives otherwise. Another potential cause is formaldehyde…. but one thing at a time. I WILL figure it out, Mayo Clinic or not. I refuse to live the rest of my life in a bathroom, and I know God will grant me the wisdom to learn what He wants me to.

Acceptance

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 though 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!!)In this 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!

Cheesy Egg Casserole

The perfect recipe for someone with fibro! Three ingredients. Mix them, put em in a dish. Bake it. Eat. And it’s still good as a leftover!

Ingredients

  • Shredded cheese
  • 2 cans green chilies
  • 6 eggs

Recipe

  • Break eggs into a large bowl.
  • Add cheese and green chilies.
  • Mix well.
  • Pour into a casserole dish.

I literally cannot recommend organic, free range, farm fresh eggs enough, for a variety of reasons (one being your health). If you haven’t educated yourself on your food sources, trust me… you don’t want to eat eggs from factory farms.

The pictured dish has a can of diced tomatoes added. Just dump in with the cheese and green chilies, and you’ve added another veggie to your meal!

Try it with your favorite salsa on top and prepare to be astounded and amazed!

Super Granola Recipe

Best. Granola. Recipe. Ever.

Not only is it good for you, it’s delicious. And, for those of us who are gluten-free with various food sensitivities, it’s cheaper than the special granola you can only find in specialty stores.

Personally, I made this with regular oats for a while, then- you guessed it- I started having issues. Gluten-free oats it is for me!

Ingredients

  • 3 c. oats
  • 1/2 c. shredded coconut
  • 1 c. chopped almonds
  • 1 t. cinnamon
  • 1/3 c. honey (All out? I’ve used agave nectar- just a little bit goes a long way!)
  • 2 T. coconut oil
  • 1 c. dried fruit, chopped into small pieces (I’m partial to pineapple, raisins are good too.)
  • 1 T. carob powder
  • 1/2 t. salt
  • 1/3 c. flaxseed (Grind it with your coffee grinder first- but don’t buy it pre-ground!)

Recipe

  • Preheat oven to 300 degrees.
  • Line baking sheets with parchment paper. Be SURE to use pans with sides! (Such as a roasting pan.)
  • In small pan,  over low, warm honey and coconut oil til melted and combined. Stir.
  • Combine all else but fruit in a large bowl.
  • Pour honey/oil mixture on top and stir very well.
  • Pour mixture into baking sheets, stirring every 20 minutes.
  • Cook 40-60 minutes, til golden brown.
  • Let cool.
  • Return to large bowl and stir in chopped dried fruit.

It’s easiest to make a double batch that will last a while… or a couple days. Either way, it’s perfect with vanilla almond milk!

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?

Cheap n Easy Salad

So my incredibly limited stash of go-to food (read: junk food) has been depleted and I am hungry. (But hey, I’m actually hungry!) With minimal energy to cook, it’s time to rely on my momma’s cooking training.

Ingredients

  • Can of kidney beans- drain and rinse
  • Corn tortillas
  • Mayonnaise or something similar- a couple dollups
  • Lemon juice- a few squirts
  • Shredded cheese- a cup or so
  • Dash of salt
  • A bit of pepper
  • Green pepper, chopped
  • A few pinches of red pepper

Directions

  • Combine all but tortillas.
  • Place on tortillas.
  • Feel satisfied. It’s not a gourmet meal, but it’s definitely better than a bag of chips- or nothing.

The best thing about this “recipe?” You use what you have. Add some mustard and pickles and it’s like potato salad. Don’t have kidney beans? Grab whatever can of beans you have.

But how do I know it’s ready? Remember how I mentioned my momma? I call her method of cooking “yea much.”

How much do I put in here Mom?

Yea much.

But how much?

As much as it needs.

But how do I know that?

It looks right. And it tastes right.

There you have it. You can’t argue with my momma’s cooking.

Rest

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.