This year I had a lot of anticipation for my local Arthritis Walk. I wasn’t as involved with the planning committee this year, so I didn’t know all the details of what it would be like. We met up with some friends and since The Helpful Hubby and I didn’t have to volunteer during the event this year, we walked the one mile course. I didn’t want to do the three mile course and have The Boisterous Boy get too cranky.

They had a vendor there with electric bicycles and now that I’ve tried them I really want one! Even on the low power setting it made riding on the grass easy. I can see so many great uses for it for someone with fibromyalgia! I was thinking that I could connect one of those bike trailers onto it to be able to take The Boisterous Boy out for rides without it being too taxing on my body. Along those same lines, it would allow me to ride faster so I could keep up with The Helpful Hubby and his friends and not worry about riding on windy days. I HATE riding in the wind.

The neat thing is that you can still shift the gears to harder gears so you can get a workout. Having the option to speed it up and make it easier would be great if your body starts hurting though. They’re pricey, but not any more than an expensive bike is. Just like high end bikes, you can also rent them by the hour, day or weekend, which would make it nice for a special staycation.

Anyway, back to the details of the day. Later in the evening my back and hip were hurting me fairly badly. It’d started hurting the night before the walk and I forgot to take something for the pain and swelling the night. After eating dinner and putting The Boisterous Boy down for a nap The Helpful Hubby suggested that I take an Epsom salt bath. I immediately thought, “Duh! Why I didn’t I think of that?” I knew why though…it was because I was tired, in pain and still trying to clean up some things around the house. In other words, I wasn’t thinking clearly.

I then took the longest soak I’ve had since giving birth and it felt great! My body felt so much better when I got out. Well, most of my body. My finger joints were killing me all of a sudden. It took me awhile, then I had a laugh when I realized why. While I was soaking, I was holding a huge, 806 page baby book up above the water and my body. Of course my fingers would get sore! Luckily they were feeling better by the next day.

How do you comfortably hold books while in a tub?

An electric bike (different than the one I rode)*

*Image Credit: from www.flickr.com by nedrichards

I’ve talked about sensory overload in fibromyalgia before and now I’ve got a great example to share. One night I was feeling a little tired and after feeding The Boisterous Boy we finally got to making dinner around 9pm. The Helpful Hubby finished cooking some ginger terriyaki beef scewers I’d gotten him and the smell was SO strong! There were only two of them and The Helpful Hubby ended up covering the skillet, but the aroma was really bothering me.

I noticed I was even holding my breath a bit in the next room. I heated up a Trader Joe’s frozen entree and when I went to stir it up I ended up dropping the fork out of my hand, throwing noodles and mushrooms on the floor. Then I went to check to make sure the broccoli I’d cooked was ready and burned my tongue!

As I finally sat down to eat I hit the remote and accidentally changed the channel. The Helpful Hubby had been wanting to watch a special news report and had it paused, but then I changed the channel a second time, which caused him to loose his program. =( Luckily he understood I was struggling and he didn’t get mad at me. He did comment on how he was surprised how much the smell was bothering me though. We both had a little laugh at the clumsiness the sensory overload had caused me.

Do you get overwhelmed by smells too?

Hold your breath!*

*Image Credit: from www.flickr.com by crushhhh

I paired up with FibroCenter.com to create an ecard that can be sent to mothers living with fibromyalgia. You can send other ecards from their site, starting Friday. To elaborate on my quote from the ecard I’d like to say our children obviously will see the challenges fibromyalgia presents in our lives. Through that they will hopefully learn to be caring and empathetic to other’s struggles. More than that though they will see how we overcome our obstacles and still have wonderfully fulfilling, empowered lives. This will teach them resilience and tenacity. To me, these are invaluable lessons and the opportunity to share them is one of the silver-linings we can find through living with chronic illness.

Being a mom is tough and being a mom with fibromyalgia is even tougher! I encourage you to acknowledge this and lift up a mother you know that is living with fibromyalgia this National Fibromyalgia Awareness Day+Mother’s Day by sending her an ecard! To share my ecard, just send them an email with this link to the larger image: http://ow.ly/kUHH8 with a special note from you!

What do you hope others can learn from seeing you live with fibromyalgia?

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You may also be interested in reading:
National Fibromyalgia Awareness Day History
National Fibromyalgia Awareness Day

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I’m so excited to be revealing The Fibrofly just in time for Fibromyalgia Awareness Day! My friends at Nice Rice made my Felicia Fibro butterflies into 3D, super soft plushies. They’re handmade with love and are great for cuddling with, but that’s not all!

The main reason I want to share my purple butterflies is to help uplift the fibromyalgia community – hence the name The Fibrofly. I want the person holding them to remember they aren’t alone in this chronic illness journey and that there are others out there, holding the same butterfly, going through the same things. United, we lift each other up, encouraging each other to keep fluttering upwards toward fulfilling, empowered lives. Besides purple being my favorite color, it is also the color for fibromyalgia awareness.

Get your own Fibrofly from Nice Rice for $15 or buy one for a friend this Fibromyalgia Awareness Day. I’m really grateful to Nice Rice for working with me to keep the price affordable. A portion of the proceeds go towards my advocacy efforts.

Blue skies and purple butterflies!

I recently went roller blading for the first time in years…like probably eight years! The last time I remember doing it The Helpful Hubby and I went together as boyfriend and girlfriend and were living in a different state. In the past I really enjoyed roller blading, but my knees would always hurt from sliding my blade edge to come to a stop. I went with people to a skating rink when the place was pretty empty so this time I mostly just rolled to a stop when I needed to, to avoid the extra wear on my knees.

Skating on the carpet in the seating area was harder than I remembered and I felt klutzy. When I got out onto the rink I was doing good on the straight parts, but my turning skills had diminished in all the years of not skating. After only a few laps I felt a little worn out! I remember that I used to go for long stretches on the rink without exiting. I didn’t want to push myself into a flare though, so I took lots of breaks between skating chunks. The Helpful Hubby was also feeling the burn physically, but his adrenalin kept him going even during most of my breaks.

One of the reasons I was most excited to go skating was to play air hockey. I love that game, but it has also been years since I’ve played it. I won two out of the three games I challenged The Helpful Hubby too. I wanted to play more, but the wrist I was supporting my weight on to bend down and keep from rolling away was starting to hurt. I thought about having a snack, but the food counter had no clue about any allergn info. I stayed safe and stuck to drinking water.

After awhile I wanted to rollerblade really fast on the straight parts, but my turning skills just weren’t coming back as quickly. With all the problems I’ve had with my hip over the past two years I did NOT want to push my luck and end up falling. I don’t have the ability to deal with severe hip pain while taking care of The Boisterous Boy, so I need to do all that I can to avoid it. I thought I would be really sore the following day, but I wasn’t! My knee was very slightly more sore and it did pop more over the following week, but that was about it! Woo-hoo! I love it when I do something fun and physical and can keep it balanced enough where I don’t end up flaring. All-in-all we were probably at the rink for about two hours.

Do you ever rollerblade or skate?

It’s like riding a bike – you never fully forget*

*Image Credit: from www.flickr.com by Signe Brockman

There are regulations that require testing that the amount of the generic drug that enters the body is approximately the same as the name brand, but not ones that test if the effect on the body is the same. Also, sometimes companies can get exceptions so they don’t have to do the required testing. Consumer Labs tested many different generic medications and found that there was often a variance of 20-25% from the name brand medication. The FDA said, “In a large FDA study that looked at more than 2,000 tests of generic drugs, the average difference in absorption into the body between the generic and the brand name was 3.5%.” this is somewhat misleading though because this is the average, so many medications are outside of that range.

There are also many different manufacturers of generic medications and each time you get a refill you may be getting one from a different source. So, according to the Consumer Labs study you could be getting anywhere from 80-125% of the intended effect each refill. This variance raises concerns if you’re on a medicine that minor dosage changes have a big impact on efficacy. Some types of medications where that is the case are ones for the thyroid, blood pressure, anti-seziure, asthma, blood thinners, immunosuppressants and antidepressans. For those types of medicines it may be safer to stay on the name brand.

If you still want to try the generic versions of those types, work with your doctor to have testing to make sure the medicines are having the desired effect. Once you know a specific manufacture’s generic medicine works for you, request that your pharmacy refill your prescriptions with the generic from that same manufacture each time. That way you won’t be susceptible to the variations other generics may have. Another option is to look for the authorized generic, which is the generic medication that is actually made by the same manufacture that makes the name brand version. In that case you’re virtually getting the same medication for cheaper.

Another type of generic medication that is concerning is extended release ones – like the ones ending in xl, er or sr. The pills are different in technology and may release at different rates, changing their effect.

Do you use generic medications?

Be proactive about your generic medication use*

*Image Credit: from www.flickr.com by Sarah Korf

Recently I went on my first walk since giving birth. I had woken up that morning with back pain out of nowhere, but it felt better by the afternoon. The weather was great so The Helpful Hubby, The Boisterous Boy and I took a short walk. I felt fine during the walk, but about an hour later I was not feeling so hot. My back had returned to hurting, but was now accompanied by fairly bad pain in my hip and upper leg – where my bursitis likes to act up.

I caught myself being a little more irritable because of the pain so I apologized to The Helpful Hubby and told him about my pain. He then offered to watch the baby while I soaked in an Epsom salt bath. I felt slightly better for a couple hours after the bath, but the pain started to creep back up again. Since I’m breastfeeding I’m still trying to avoid taking medication unless I absolutely have to. I slathered myself up with Sombra gel and propped my feet up.

A few hours later the pain was improving and by the next day I felt a lot better. I guess my back hadn’t gotten better during the morning of the walk, so I probably shouldn’t have gone. I am happy we’d decided to only do a short walk because I have a feeling I could have started a decent sized flare-up otherwise. For dinner that night I was happy to have a quiche from Costco that I could just pop in the oven. That spared me having to stand and cook which could have irritated the pain.

Do you notice when you’re acting cranky because of pain?

Remember to go slow when starting new exercise*

*Image Credit: from www.flickr.com by Looking Glass

Think about whether or not the time in the car will make your fibromyalgia flare up more than the shorter amount of time you’ll be at the airport and flying. For me, a short plane ride (2 1/2 hours or less) isn’t too painful, but driving for long periods will make my wrist tendinitis flare up for a week. Since I want to enjoy my time at my destination, flying on a short plane ride makes the most sense for me.

If you’re considering driving, another aspect to consider is how comfortable you are sleeping in hotel beds. You’ll probably need to spend the night somewhere at least once along your route. If sleeping in hotel beds always makes your back hurt or you don’t get much sleep in them, it sets you up for a more painful and harder time driving.

If you have any food sensitivities or allergies I actually think flying is easier. On a longer road trip you’ll have to figure out more meals and snacks and you’re at the mercy of whatever stores and restaurants are along your route. I’ve found that restaurants in rural areas don’t seem to know about food allergens or how to help figure it out. It can add quite a bit of time to a meal (and your trip) trying to teach them and wait for answers. Sure, you can bring some food along, but you can only keep perishable foods cold for so long. I’ve never had a hard time bringing a decent amount of snacks through the security check point at the airport. If my snacks aren’t enough I’m usually able to at least find some fruit inside the airport.

To help you make this type of decision, check out my posts with tips for traveling: Tips and Tools for Traveling via Car, Tips & Tools for Traveling via Airplane – Part I, Tips & Tools for Traveling via Airplane – Part II and Tips & Tools for Traveling.

Do you prefer a short plane ride or a long car ride?

Don’t be afraid to travel!*

*Image Credit: from www.flickr.com by kthread