Evolution of a Fibro Girl's Wardrobe

It's been about three months since my last post which actually makes perfect sense. About three to four months ago, I really started to feel the pain and discomfort of a new fibromyalgia symptom. It's pretty common among fibromyalgics to have bladder problems but it was definitely new to me. My doctor is leaning toward a diagnosis of interstitial cystitis which basically feels like I have a urinary tract infection all of the time, I pee 20+ times a day, and I haven't slept longer than 3 hours at a time in months.


What does this have to do with my wardrobe? My clothes hurt! Wearing pants has become unbearable. I don't even want to try tights! And I LOVE tights! The temperature is dipping and it's really starting to feel like fall and the cute pants and colorful tights collection I've built may have to hibernate this winter because I have months of tests and procedures ahead of me to confirm a diagnosis and time to figure out a treatment plan that works for me.


As I slowly began to pack away pants this week (the complete opposite of what should be happening in October) I couldn't help but think of other things I've given away or packed away over the last couple of years while learning to live with fibromyalgia.


It started with high heels. I would wear them at work or on nights out. Who doesn't feel good in heels? I don't! At least not anymore. Leg cramps and backaches were my first fibro symptoms. Heels made those cramps and aches worse and longer-lasting. Slowly but surely, my shoe collection of varying heights had dwindled to a collection of colorful flats. Sometimes I feel a pang of jealousy when I see a woman on a pair of spectacular heels but my feet, legs, and back are grateful to be flat on the ground.


My shoulders and middle and upper back were the next spots on my body to flare up with aches and pains. Lightening the load in my purse seemed to work for a bit, but I felt completely unprepared for life carrying a practically empty bag when I prefer to carry an array of emergency supplies. All of my shoulder bags were packed up as I switched to cross body bags, but it wasn't long until I realized I needed to swallow my pride and start using a comfortable backpack to balance whatever I was carrying and help prevent muscle cramps and tension headaches. I carry a completely unfashionable backpack 95% of the time and even though it hurts my girly soul, my body is grateful.


And now I need to prepare for a winter without pants. I'm not looking forward to packing away my skinny corduroys and boyfriend jeans and replacing them all with midi and maxi length skirts to keep my legs warm (remember-- no tights!). I have a strong feeling I will spend most of the winter looking like a Duggar. It will definitely be weird but I know my body -- my lady parts, especially -- will be grateful.


I'll have to remind myself not to be jealous when I see women in heeled boots and skinny jeans, swinging their fabulous bags this winter. I'll have to remind myself that we all have different reasons for the choices we make when we look in the closet in the morning. Some women's bodies feel great in heels, pants, and purses, but you'll find me this winter trying as hard as I can to try to be as comfortable as a fibro girl can be in a long skirt, a practical backpack, and sensible shoes.

22 Things I Love About Logan: Age 2 Years, 8 Months

1. He will say the "sh" and "s" in "shoes" but not in other words. For example, "I want to wear my Piderman shoes to cool today" which means "I want to wear my Spiderman shoes to school today."
2. He gets jokes. He knows that the mouse and strawberry wearing glasses, mustaches, and noses in "The Little Mouse, the Red Ripe, Strawberry, and the Big Hungry Bear" is funny. He also thinks it's hilarious to hide from mommy and daddy under the couch cushions or blankets and doesn't realize we know where he is because (1) we can see his legs and (2) we can hear him giggling.
3. He plays a mean air guitar on anything that could possibly be a guitar.
4. All toys and objects now serve multiple purposes: a bench is not just a bench, it's a train an the cross bar below the seat is a luggage rack for our shoes which are suitcases.
5. He lays on the floor to get up close and personal with his toys, even when we're in a store. I want to know what he's thinking about when he's down there.
6. He's showing some natural talent for sports! Ryan and I both grew up playing sports so seeing him show an interest in everything makes us so happy! We play soccer in the hallway and he can dribble well, he can hit a baseball even without a tee, he loves to smack the dimples off a golf ball, he can bounce a basketball five times, and he can run... fast! He likes to watch sports too! He was cheering right along with us during the World Cup, he loves going to daddy's softball games, and we carve out special time to watch "So You Think You Can Dance" together every week.
7. The way he asks questions: "you want to play trains with me, Mommy?" with his head cocked to one side.
8. All emergencies, start with "uh-oh!" or "op!" He get's "op!" from me. I don't know where it came from. Sometimes I just make noises. One common phrase in our house right now, "uh-oh! Pee-pee's coming!"
9. 95% of the time he is such a good boy. For a mom with fibromyalgia, having a child who is generally well-behaved, a good listener, and can focus on one activity for an extended period of time is such a blessing.
10. He still takes naps. Two hours a day, every day. And, most of the time, getting him to sleep at nap time and bed time is a breeze.
11. The way his face lights up when I pick him up after school. It erases all of my stress from the work day.
12. The way he asks me to pick him up: "you have to carry me." I always want to respond, "I do?"  Also, "you have to hold my hand." I can only think, "yes, sir!"
13. When he's frustrated, he throws his head back and walks away, huffing, just like Ryan and me -- sometimes he's too grown for his own good. 
14. He is learning how to match things. He can match most of the alphabet and shapes, even poorly drawn shapes. This week he held up an airplane to my chalkboard airplane which looked more like a shark or a bird and said, "it matches!" It's time to start playing Memory!
15. He loves to play games! My dream of having a family that has a weekly family game night may actually come true!
16. He has an opinion and preferences and isn't afraid to share them. He chooses his own clothes and shoes (despite our suggestions), he prefers pink ice cream with M&Ms above anything else, and he's not afraid to say, "I'm all doooone" or "I don't like that."
17. He LOVES Mickey Mouse and the Mickey Mouse Clubhouse. He doesn't like any other cartoon. This has pros and cons: if we need to do something that requires our nearly undivided attention we know he will sit and watch an episode almost without blinking and it's something we can take away when he misbehaves, however, it also means we've created a little addict and I know kids aren't born with bad habits -- we create them! I feel the guilt even though I am happy to see him have emotional attachments and responses to situations. He actually talks to the TV when they ask questions... maybe it's not so bad to know he responds well in a digital world?
18. We were able to potty train in 3 days! 
19. His concept of time. When he's not ready to finish whatever he is doing, he always asks for "two minutes!" We give him two minutes, or sometimes five minutes, but he really has no idea what this means other than more time before a deadline. He also like to add "right now" to the end of sentences, but not in a demanding way. 
20. His hugs. Logan is a great hugger.
21. Hearing him say, "Mommy! Where are yooooou?!" when he wakes up. He doesn't come out of bed to look for us or wander around looking for something to play with until we wake up. When he's up, he's ready for mommy and tells me, "I need my milk and my breakfast and I need to watch Mickey" while also narrating our walk down the hallway (all in one sentence): "it's dark in here, turn the light on, turn the blinds on, I'm cold, I want my Oma blanket..."
22. Our bedtime routine. He takes a bath, we sing "Row your Boat" or "Five Little Ducks" depending on which toys he plays with, he needs to make footprints on the rug when he comes out of the bath, we brush his teeth, he chooses his own underwear, he sits on my lap while we put on lotion and get him dressed, he runs out to give Ryan a big bear hug and tell him goodnight, sometimes we Skype grandma and sing songs to her, we sit together and read at least two books, sometimes he reads one book to himself for "five minutes", he gets his doggy and shark and asks for his Thomas blanket, then we lay in bed to snuggle and talk about the day or sing a few songs until he tells me he's ready to go to sleep. He's so sweet at bedtime. It's my favorite.

I love my little boy -- he's growing up so fast!

Are you ready if an emergency happens while you're at work?

I think the most important place to be prepared for emergencies is in your home because, for most of us, it's where we spend most of our time. Where's the second most important place? Your place of employment! It's where you spend the most amount of time outside of your home. If your work leads you to spend a ton of time in your vehicle, read this post: Emergency Kit for Your Vehicle and add some of the items listed below to your car kit.

If you work anywhere other than your home or your vehicle, you should be prepared to either shelter in place or evacuate at any time. If you aren't ready yet, now's the time! An emergency could happen today! I work in a big office in Washington, DC, just blocks away from the office. On my way to and from work, I pass several important buildings including the FBI and the Pentagon (among others). In the 5 years that I've been here, we've had earthquakes, blizzards, hurricanes, tornado warnings, and major shooting incidents nearby, and that doesn't take into account things we don't know about. I keep a small backpack and change of shoes under my desk filled with supplies I may need in case I am unable to leave the building overnight or need to get home without the aid of electricity or transportation. Bear in mind, if you usually use a car to get to work, you might not be able to get to your car to get home. Or, you might have to leave your car on the side of the road somewhere while trying to get home, so having a bag like this will be useful for you car commuters as well.

This backpack cost me $8 during a back-to-school sale last year and the shoes are old running shoes with a pair of socks in them, ready to go. I always commute in comfortable shoes because I use the metro (subway) to get to work and I feel like I should be ready to walk in case it shuts down or is compromised, but if I know I'm going to have to walk all the way to Logan and then home, I'm happy I have shoes that are designed for that task. Now is the time to get a backpack because back-to-school sales make them inexpensive everywhere.

So what's inside the bag?

• Water (walking in DC in a sweltering summer would be awful without water and, if we had to shelter in place, we might not be able to access our water in the building)
• Whistle (if someone is looking for survivors, I want to make sure I am found)
• Granola bars and protein bars
• Canned fruit 
• Candy (for extra energy when the blood sugar is low)
• Tape (for leaving instructional signs for friends and family)
• Paper and markers (for writing signs and notes or starting a fire)
• Headlamp and spare batteries (for walking in the dark)
• Toe warmers and hand warmers (for walking in the cold)
• Ear plugs (if DC is getting bombed and I make it out, I want to keep my hearing)
• Face masks (for keeping out dangerous particles)
• Hat (for protection and shade)
• Working gloves (for moving things out of my way)
• Sunscreen (try to do anything with a sunburn!)
• Chapstick with SPF (ditto)
• Tampons (because you never know when an emergency will happen!)
• Toothbrush (we need out teeth to eat, no matter what)
• Toothpaste
• Antibacterial gel
• Iodine wipes
• Medicine: stomach, cold, allergy, pain, aspirin (aspirin to help someone having a heart attack)
• Neosporin
• Band-aids
• Medical tape
• Two ponchos (to keep Logan and me dry)
• Plastic bags (in case something gets wet)
• Matches in a plastic bag (to start a fire)
• Copies of identification, insurance, passports, and emergency contact list
• Copy of my friend Bryana's emergency contact list (she has a copy of mine, so we can contact  families)
• Cash
• Road map (there are a few ways to walk out of DC)
• Rubber bands
• Snack for Logan
• Moby wrap (for carrying Logan a long distance if I can get to him but can't get home or to our car)
• Sweater, underwear, and pants for Logan
• Pocket knife

I'm planning on adding:

• An innertube or some other flotation device in case I need to get home and the bridges aren't accessible (I can swim, but I don't know how well I can swim with a backpack!)
• Large garbage bag (to keep everything I'm carrying dry in case I need to cross the river)
• Pepper spray
• Insect repellent

In comparison to pre-packed 24-hour get-home bags, this is pretty light in both weight and content. Even though I have to cross bridges and a river to get home, I only work 4 1/2 miles away from home. On most days, my commute is a total of 28 minutes, 16 of which are spent walking. If you have a lengthier commute, you might consider a more comprehensive bag like this one because you might have to face some crazy elements and crazy people trying to get home to your family and your stuff.

When you just can't find the words

Life with fibromyalgia is full of highs and lows. Over the last two months, I've felt better than I have in the last two years thanks to: the change of seasons (my muscles and joints prefer warm weather), changes in my diet (my body prefers less grains and sugar), and stopping my prescription medication. Based on how good I have been feeling, I would have thought I was on my way to a period of remission.

Nope.

I was wrong.

Generally, I don't feel stress at work. Not that my job isn't stressful, I just think I've developed a pretty good toolkit for dealing with stress when it's coming. The last couple of weeks have been particularly stressful and the tools in my kit just haven't been enough.

One good way I manage stress is exercise. I love this time of year in our neck of the woods because there are so many great reasons to be outdoors. We've been biking a lot, partly because of the good weather and partly because our one and only car was in the shop for three weeks (another source of stress!). This week, I stepped up my exercise game. Even though mentally and emotionally I know it's the right time to make progress on the exercise front, I don't know if my body was ready.

Yesterday, for the first time in months, I woke up exhausted. I had a few muscle cramps and general discomfort the night before which certainly didn't help my sleep situation. By 9am, I was ready for a nap. Logan and I had been playing "basketball" and I just couldn't hang on. I stretched out across the foot of my bed and tried to watch him play, but couldn't keep myself awake. I asked Ryan to take Logan to the living room so I could sleep for 30 minutes before we left for soccer. Ryan asked me to tell Logan I needed some rest and to ask him to go to the living room but I couldn't. I was experiencing my first real fibro fog. In the past, I have felt slow or forgetful, but this time was unsettling. I could visualize the words I was trying to say and I could visualize a little cartoon hand trying to grab them, but no matter how hard I tried, I just couldn't put the words in the right order. When I tried to ask Logan to leave the room so I could rest, I couldn't form a sentence! I just said words! Luckily, Ryan ended up just taking Logan out of the room. When I woke from my nap, I explained to Ryan what I had experienced and he was surprised. He thought I was just messing with him.

But it was real, and it was scary. I was still exhausted after soccer and a quick trip to Target so I ended up taking another nap which helped me feel better. I wish I could nap twice a day in the office! Unfortunately, the stress at work isn't going to ease up in the coming weeks (in fact, it will undoubtedly get worse) and I'm committed to continuing with my exercise. I'm so afraid this will happen again and this is not the time to sound like a bumbling idiot and collapse with exhaustion! I hope this extreme fibro fog doesn't happen to me again.

Upcycled Outdoor Hanging Planter

Last spring, I made my first set of upcycled hanging planters and they fared so well, I am using them again this year and making some more. They were the perfect container for growing herbs. This is cilantro I started from a seed 3 or 4 weeks ago in one of last year's containers.

They are so easy to make! You don't have to be crafty. These are the supplies you need:

 

• Old, clean, juice or soda bottles. (Don't use milk bottles, they retain bacteria if not cleaned properly.)
• Duct tape.
• Scissors.
• Twine or any kind of sturdy string that can be used outdoors.
• Hole-punch.
• Power drill.

Step 1: drill one or two holes in the bottle cap for drainage.

 

Step 2: Cut the bottom off of the bottle.

They should look like this. Imagine my assistant saying, "I am a robot" and moving his arms around.

Step 3: Punch two holes across the opening. These holes will be for the strings for hanging.

Step 4: Wrap duct tape around the bottom (now the top) of the bottle. Fold the tape in. This helps make the bottle stronger. Make sure to find the holes and puncture them again. You can hole punch it after you apply the tape, but you have to have incredibly strong hands!

Step 5: Cut two pieces of string about 3 feet long.

Bonus step: allow assistant to add extra tape and stickers to bottles.

Step 6: Loop one piece of string through each hole.

Step 7: Add rocks to the bottom of each bottle to assist with draining.

Step 8: Fill bottle with soil.

 

Step 9: Tie onto your balcony or hook.  Note: After winter, the strings may dry out, so they may need to be replaced.

Step 10: Add a seed. Label it. Water it. Watch it grow. Enjoy delicious herbs in just a few weeks!

 

GREAT Deal on Neutrogena Facial Cleansing Bars at CVS through May 24

Now through May 24, you can STOCK UP on Neutrogena facial cleansing bars. I love this gentle cleanser and I love this deal!

Where I live, these bars cost $3.39 each. When you buy 3, you get $10 back in ExtraBucks (ECBs). The best thing is you can repeat this deal SIX times! Luckily, I already had $10 ECBs from my last CVS trip, so this literally cost me 75 cents and I got $10 ECBs to use on my next purchase. My CVS had 6 bars, so I was able to do this transaction twice.

 

Here's how it worked for me:

• Scan ExtraCare card. Ring up 3 Neutrogena bars. Total: $10.75. Scan $10 ECB. Pay 75 cents! Get $10 ECB on your receipt.
• Then do it again! Scan ExtraCare card. Ring up the next three Neutrogena bars. Total: $10.75. Scan $10 ECB from your last transaction. Pay 75 cents! Get $10 ECB on your receipt.

Today I got 6 bars and only paid $1.50 out of pocket. I'll check other CVS locations until May 24 so I can maximize this deal. Remember, you can do this six times, so you could end up with 18 bars for a whopping total of $4.50 with $10 ECBs leftover to spend on something else.