Voiceless Wonder

When you have RA, day to days tasks become difficult if not impossible. Most of us try to find easier ways of doing things, even using aids to assist with what should be the simplest of tasks. Having RA and MCS can in some ways make finding these aids near impossible but I have found a few things that have made my days easier.

The biggest hurdle, at least for me, is personal grooming. Not only are most things difficult for me to manoeuvre with my creaky hands, most things are scented which can make bathing damn near impossible.

Thankfully, I have found a few things that have made my life easier. I found a great unscented, chemical-free shampoo and conditioner by Curelle that I purchase from Aviva.ca. These are salon quality products that have left my hair feeling super silky. And by putting pumps in the bottles instead of the regular squeeze cap, I can easily dispense the products.

Unfortunately the actual act of shampooing my hair is another issue. But Aviva.ca carries this fantastic little gadget by Relaxus--a shampoo brush! It is easy to hold and it does the scrubbing of my scalp for me, saving my poor fingers.

Drying your hair is another sometimes painful task. I have found that rather than trying to manoeuvre both a hair dryer and a brush, a hot brush allows me to perform both tasks with ease. Usually styling products are a no-no for those with MCS but I have found a great unscented, all natural hair gel by Hairy Kids does a great job of styling my locks (they have fantastic shampoos, conditioners and body washes too!). For those days when hair spray is a must, Sun Coat Sugar-Based Natural Hair Spray is both scent and chemical free and holds your desired hairstyle but doesn't leave your hair frozen in place (à la 80's rock band).

Shaving is another task that has caused problems for I'm sure most with RA not to mention trying to find one that is MCS friendly. I use the Intuition Plus Razor for Sensitive Skin by Schick. It has a non-slip thick handle that makes it easy to use and the sensitive skin blades with built in shaving cream and moisturizer is fragrance free.

Some days, holding a loofah or a face cloth can also be a difficult task. In addition, stiff joints make it even more difficult to reach those hard to reach body parts. On these days, I have found that using a loofah/body puff back scrubber makes the job much easier. They even have a model for your face!

Finding a MCS friendly body wash that won't break the bank and that is relative easy to find in stores is difficult. There are few main stream products that I can use anymore and the fragrance free lines by Aveeno are one of them. I use Aveeno Fragrance Free Skin Relief Body Wash for my body and Aveeno Ultra-Calming Foaming Cleanser for my face (it's also fragrance free).

Finding an anti-perspirant is perhaps the hardest thing if you have MCS. I tried close to 30 different ones before I found one that a) kept me odour free and b) didn't send me running for my inhaler or migraine meds. I use Almay's Fragrance Free Solid Anti-Perspirant and Deodorant. This product unfortunately isn't available in Canada but I usually purchase it from Ebay.com or Drugstore.com or I stock up when we head across the border to upstate New York for some shopping.

RA hands also seem to have a hate-on for teeth brushing. For my pearly whites, I use a rechargeable toothbrush. Mine is an Oral-B Advanced Power but any battery operated toothbrush with a thick handle should do the trick. There are many affordable ones out there, such as the Crest Spin Brush and the Oral-B Vitality. For flossing, the Oral-B Hummingbird Electric Flosser can do all the work for you or for those who don't need as much help, the Reach Access Flosser is a great tool to have.

It is important to remember that everyone with MCS has different triggers and what I find is safe for me, may not be safe for you. Always do a sniff test in-store or if ordering online, see if the retailer will send you a sample.

For those with RA, sometimes the unorthodox way is the only way. Whether it be using a hair dryer instead of a towel to dry off after a shower or just using a hairbrush with a wider handle, whatever doesn't hurt your fragile joints is the way to go. Sure your spouse may laugh if s/he sees you performing whatever trick works for you but if it helps make your life a little easier go for it!

In the coming months, I will post my tips for day to day living RA style with a MCS twist. If you have tips of your own, email me at steph@voicelesswonder.com or comment below. I would be thrilled to add them to my posts and to try them out!

Things have been busy around here this fall/winter. Back in August, we came to the relization that we would have to move to a bungalow sooner than later as my knees are rapidly deciding they no longer like stairs. Within 2 weeks, we found the perfect home. It is a new build home in a community that is Canada's first completely Energy Star neighborhood and is being built in coordination with Conservation Canada. Every tree cut down is being either replanted in the community greenspace or are offered to homeowners to plant on their properties. In addition, homeowners are encouraged to use only Eco friendly cleaners so as to not harm the environment for the wildlife we share the area with.

We've upgraded our new house so that is completely RA and MCS friendly. The house has a HRV system to circulate clean air throughout the home. We have installed a jet tub in the master bathroom to soothe my sore joints. The master bathroom also has a shower stall with a seat. In the kitchen cabinets, instead of shelves we have installed pull out drawers so I won't have to bend and try and root through cupboards. We have made all the doorknobs in the home lever style knobs so I won't hurt my wrists trying to open doors. We will also be installing an above ground salt water (no smelly chlorine!) so I can do my hydra therapy in the privacy of my own back yard.

Once we bought a new home, we needed to sell our current one. Problem was that the new house ready until June 2010. No one was going to buy our house in September 2009 and not move in for 8 months. The waiting was tortuous. What if our house didn't sell?

We finally put it on the market last week. Our worries were for naught. After 2 days on the market, 27 showings and 3 offers all above asking price, our house is sold, without conditions, for $11K ABOVE asking price. Note to my American readers, we don't have escrow here. We have conditions--usually pending financing or house inspection and these conditions usually need to be waived within 7 days or so of a purchase. In our case, our purchaser did not need financing and had the foresight to request an inspection before offers were presented (we had an offer day--all offers were held until the end of day 2 of showings.) Now all we have to do is pack and wait until moving day!

We got some bad news in January. Little Miss Bazil is now diabetic and requires insulin injections twice a day. Her sugars are still very high and we are strugging to get them under control. In 2 months she has lost 5lbs-- in a dog that was only 17lbs to begin with this is a lot. She is also starting to go blind in one eye. We've had many sleepless nights worrying about her and I am sure there will be more to come. But, for now at least, she's still driving us crazy with her energy and hopefully will continue to do so for many years to come.

As for me, I've been hanging on. This winter has been hard on my RA as I'm sure it has been for many of you. My hands and feet have been attacked in all their joints and I have had some issues with inflammation of the cartilage in my ears and nose. My voice has been continuing to get stronger. Since starting MTX almost a year ago, it has improved and I have almost a normal voice 60% of the time. I still have moments daily where I can not speak and even more moments daily where I can not breathe but compared to a year ago, I am tons better. I truly believe MTX has saved my life.

I hope to be able to write more in 2010. I have been working on a couple of posts for months now that I hope to be able to post in the coming days. I hope the spring is kinder on all of our joints and to my MCS friends, I hope this spring brings you some relief as well. Happy 2010 to all!

RA Warrior recently did a 3 part series on cricoarytenoid arthritis, the RA complication that caused me to become the Voiceless Wonder.

Kelly, is the first person I have come across that has suffered from this same complication. After talking to her, I realize that perhaps this complication isn't as rare as I thought; it's just isn't discussed very often.

Hopefully between my blog, Kelly's series and resulting discussions on both her blog and Facebook pages, it will be more well known which will hopefully make those of us who suffer from it feel less alone.

Everyone should take the time to listen to the stories of other RA patients posted on the NY Times Health pages. I can relate to all of them and found myself saying, "Yep. Been there!" to just about everything that was discussed.

Everyday I thank the good Lord that I live in Canada. Sure, it's colder here in the Nation's Capitol and we pay more taxes than our neighbors to the south but we have one thing that is better. A huge thing. We have health care.

These days, it seems like the pain and fatigue are never ending. I found myself starting to spiral into the murky depths of the RA blues so I decided to start celebrating the little things in my life...

My hips, knees and hands are in agony but,
my elbows and shoulders have been pain free for 2 weeks now!

My hips make sitting or walking for long periods difficult but,
I am still able to walk my beloved pups around the block most evenings!
(Albeit slower than they would like)

Some days it seems like I spend more time asleep than awake but,
my naps are usually accompanied by a warm furry JRT nuzzled by my side!

And the biggest little thing of all...
The MTX has turned me into a hair shedding, nail losing zombie but,
it has enabled me to enjoy a small scoop of ice cream again!

Life with RA and MCS (or any chronic affliction) can sometimes feel like it's too much for you to handle. The exhaustion can be more painful than the disease it self. Losing the ability to perform even the most basic tasks unassisted is mentally heartbreaking but try to remember the little things. Because, really they are the most important things of all.