Voiceless Wonder

Introducing Miss Zoey!

2011-10-16T20:38:00.001-04:00

Happy 12th Birthday Farfalle!

2011-06-19T13:17:00.003-04:00

RIP Bazil

2011-05-17T22:00:00.009-04:00

Sadly our sweet Bazil passed away at 3pm today. She appears to have suffered an aneurysm or brain bleed and there was nothing that could be done to help her.

Bazil was the light of our life for 10 wonderful years. She came to us from the Humane Society when she was approximately 4 years old. She was a typical Jack Russell Terrier who loved to dig, bark and play fetch; she was also the sweetest dog you could ever meet. She never bared her teeth or even growled at any people. She was bossy with other dogs (especially Farfalle) but with humans she was so sweet and submissive. We couldn't have asked for a better girl.

Her last year was wrought with many health difficulties. She had severe arthritis in her hips, Cushings, diabetes, cataracts and glaucoma that left her in darkness for her last year. But she never let it show. She was still the happy little girl she had always been. To look at her, yes she looked old but you would never guess she was as sick as she was.

We miss her terribly. The loss to our household is one that will never be filled. She was our baby, our sweet little girl.

Rest in peace my sweet Bazil. I love you so very much and will never forget you.

Bazil

1997-2011

Happy 14th Birthday Bazil!!

2011-05-07T12:57:00.015-04:00

Miss. Bazil is actually awake in this photo. She is blind but bright lights bother her so when the flash went off, she closed her eyes.

We are so thrilled she reached this milestone birthday. The vets told us last year she would never reach this day given her health difficulties. My girl showed them; she's a little fighter!

Valentine's Fiesta 2011

2011-02-14T23:45:00.014-05:00

After a 1 year hiatus, our annual Valentine's Extravaganza tradition resumed this year. We quickly learned that our new kitchen is smaller than our old one, which complicated dinner preparation this year but we were finally eating by 10pm. We will adjust our usual plan next year to accommodate for the smaller space.

Renzo's meal started off with a flavorful Asparagus, Artichoke, Camembert, Caramelized Pear and Arugula salad followed a delightful Dover Sole Picatta paired with Roasted Brussel Sprouts, Caramelized Onions & Toasted Pistachios and Champagne Risotto. His meal was paired with a Sauvignon Blanc.

(I use a champagne Vinaigrette instead of the Caesar Dressing indicated in the recipe)

My meal started with a sweet French Onion Soup followed by a decadent Sauteed Chicken Breast in a Creamy Tarragon Sauce, Asparagus with Toasted Almonds and Risotto. As I unfortunately am not allowed alcohol due to my RA meds, my meal was paired with San Pellagrino.

(Renzo only used 1tsp of Dijon mustard in the sauce. The asparagus and risotto were his creations but are very similar to the recipes posted)

The meal ended with Chocolate Puff Pastry Croissants and tea.

Ah childhood memories...

2010-12-02T10:47:00.001-05:00

I loved this cartoon as a child. What happened to cartoons like this; cartoons with a message; cartoons we could feel good about? Bullying is such a hot issue these days. Lambert has such a great message. It's a shame it's not being used as a teaching tool in schools anymore.

Farfalle Houdini

2010-08-26T21:14:00.002-04:00

Making RA lemonade with a MCS twist: Bathroom Edition

2010-08-02T15:00:00.005-04:00

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!

Happy 11th birthday Farfalle!

2010-06-19T15:40:00.001-04:00

Happy 13th Birthday Bazil!

2010-05-07T23:42:00.003-04:00

All in the Family...

2010-03-04T03:00:00.003-05:00

My mom recently found out that she was misdiagnosed with Osteoarthritis 5 years ago--sort of. She really does have OA in her hips but all the other joints involved were not OA. She too has Rheumatoid Arthritis. And I, in part, was the one who diagnosed her.

I found it strange that she would have flares in various joints. I too have OA in a few joints and I know from experience that OA pain never goes away. It's always there, in varying degrees. Whereas with RA, at least in my experience, I can go from having excruciating pain in my elbow for months to waking up one day with no elbow pain at all. She also had a few other little things that were similar to me; sudden flushing and fevers, an increasing sensitivity to scents and chemicals -- although this is likely my fault. When one makes their home completely chemical and scent free, if exposed to them they are suddenly more noticeable; even Renzo notices now.

I asked her if she was sure she didn't have RA. What was her blood work like? She looked at me like I had 3 heads--"What blood work??" I asked what her rheumatologist said during his exam? Again the odd look, "What exam? He looked at the hip x-rays, held my hand briefly, prescribed Voltaren and sent me on my way." He saw her once. Never again.

So I went on a mission. And in truth it was more for me than her. I was desperate for someone in my life to understand. I mean really understand what I go through every day. Sure the Boy sees what I go through. But he can never really understand. Sure my RA Tweeps get it. But none of them live here. A few months back, I went out to dinner with my childhood girlfriends. I had to ask one to cut my food for me because I was unable to. I have never been so mortified. Renzo, of course, thought it was hilarious. Maybe this is selfish but I want to commiserate with someone who has been there.

And maybe I also wanted someone to blame. My rheumatologist asks me every visit if perhaps this relative or that relative may have had RA. And my reply has always been no. OA in the family but not RA. And then he clicks his tongue and makes another note in my file. As if he too is desperate to be able to blame someone for my condition. I mean really, after 34 years of this disease in one form or another, who wouldn't want to blame someone?

I got my mom on the waiting list for my rheumatologist and after the long wait, she finally saw him just before Christmas. She told him my suspicions. He checked her out and thought I could be right. After the blood work came back, the diagnosis was confirmed a couple of weeks ago. I now have a MTX buddy!

But I guess I can't really lay the blame on her. She's only had RA for 5 years. So I guess she could say she got it from me. Oops! Sorry Ma!

Year of the Tiger...

2010-02-27T01:52:00.006-05:00

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!

Cricoarytenoid Arthritis (RA Warrior)

2009-11-20T17:19:00.002-05:00

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.

Image © Kelly Young

Patient Voices: Rheumatoid Arthritis (NY Times)

2009-11-20T16:20:00.012-05:00

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.

RA sufferers don't often talk about their disease. And we should. Otherwise, we will never get the world to understand. Sometimes those closest to us, just don't want to hear us "complain" anymore, and they stop listening.

I encourage all families of RA sufferers to listen to these stories. Perhaps if you hear it coming from a stranger rather than someone you love, you will be able to really hear it.

Image © Photographs by John Anderson, David Walter banks, Alex di Suvero, Steve Kagan, Sabina Louise Pierce and Brendan Smialowski for The New York Times

Canadian Medical Praises...

2009-07-15T02:49:00.007-04:00

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.

In the past 5 years, I have seen 7 different specialists and 2 family doctors. I have had scores of x-rays, CT's, allergy tests and blood draws. And it all has cost me nothing. The only medical services I have paid for are my physio visits, cortisone shots (because I did not have them done in a hospital) 1 specialized blood test, and my prescriptions. All of which is covered by our medical insurance.We are lucky. Our insurance provider covers 100% of our medical bills, without any deductible. When the time comes for my hip and knee replacements, OHIP will cover the surgery and our insurance will cover the hospital stay, medications and physio visits. Say what you want about Canadian health care, but if you have a serious health problem, it is a Godsend.

If I was living in the US, my RA and resulting lung issues would cost us a fortune. Currently, my monthly prescriptions are approximately $700/month. I go to physio 1 to 2 times a week at $50/visit; I have monthly blood work and see my Rheumatologist every 3 months. I also see my Family Doctor every couple of months for some complication or another. If it weren't for our health care coverage, we'd be in the poor house!

I have read other American blogs, where the writer has complained about having to jump through hoops for their HMO to approve the medication that was ordered by their doctor. I've read about people begging their HMO's to allow then to even see a doctor, or have a medical test performed. Recently, I came across New Knees for Lisa. Lisa has RA and desperately needs knee replacements for both knees. Her insurance deductible is $7600. She has had to resort to relying on the kindness of internet strangers to raise funds so that she can walk pain free again. Then there are those, who don't have insurance. Those who can't pay for even the basic medical care. I can't even begin to imagine how these people with serious health issues cope.

Yes Canada has their health care woes. We have doctor and nurse shortages. Waiting lists for CT's and MRI's are miles long. I even had to wait a year to see a Rheumatologist. But I'd take all that, to know that I can afford my medical care. If I had to add that stress to the stress of having RA and MCS, I don't think I could take it. Being sick is hard enough. Not being able to afford treatment is a whole lot worse. My Canadian readers, remember that the next time you complain about your medical care. Be thankful that you have it.

It's all about the little things...

2009-07-10T09:31:00.003-04:00

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.

Japan Officially Recognizes MCS!!

2009-06-20T01:49:00.004-04:00

It was announced earlier this month that Japan has officially recognized MCS as a real illness.

An estimated 700.000 people suffer from Chemical Sensitivity (CS) , and the health coverage is based on the list of illnesses used in electronic medical charts and electronic treatment fee claims forms.

The Government for the first time has officially recognized Chemical Sensitivity (CS), also known in other parts of the world, as Multiple Chemical Sensitivity (MCS), due to the Medical Information System Development Center (MEDIS-DC) , who on June 1st 2009, contacted the Sick House Syndrome Liaison Committee and gave the excellent news that

it planned on October 1st 2009, to add Chemical Sensitivity (CS) to the list of illnesses used in electronic medical charts and electronic treatment fee claims forms.

This is huge! Hopefully now more countries will follow suit. It will take time but we will win this fight!

Happy 10th Birthday Farfalle!

2009-06-19T15:54:00.010-04:00

Happy Birthday Mr. Fella!
You were such a cute puppy...

And now you are an even cuter grumpy old man!

I'll take auto-immune diseases for $500 Alex...

2009-06-18T09:05:00.006-04:00

I just realized that I have never told my readers my story. The reason I am the Voiceless Wonder. It's a long boring tale, but one that should be shared, so grab a coffee and get comfy.

When I was a kid, I had (Adult-type Juvenile) Rheumatoid Arthritis. Which unlike the arthritis that people get from everyday wear and tear on the body (Osteoarthritis), RA is an auto-immune disease. Basically your immune system thinks your joints, organs and other tissues are evil and it tries to kill the evil. I've had it since I was 2. The doctors told me and my parents, that I'd go into remission in my early 20's and that would be it. No more disease. They also said in a way, I was lucky as it meant I'd also never have Osteoarthritis (OA) as an adult.

I suffered all through my childhood, missing a couple of years of school (had to be home schooled by a tutor during these absences), was on crutches for 1 year spurts 3 times, got sick a lot, and had other related muscle and tendon injuries. I wore many hand and leg splints and I spent 15 years going to physio and occupational therapy. Sure enough, when I was 20, I went into remission. The rheumatologist told me at that time, "Ok, you should be fine now. If you have a problem, just come back and see me." I was fine for a year. A year later, I couldn't walk for 6 months so I was on crutches again. But it took 12 months to get an app't with the RhDr and by the time I went back, I was fine, so nothing was done. After that, I decided to just treat any issues on my own. I was well equipped after 15 years of physio to take care of small flare ups myself. And really I'd only have a minor flare-up for about a month in the winter (usually my foot, knee or hip). The odd time I'd go to my GP if the pain was really bad and they'd tell me, "Oh it's just tendonitis. Your JRA is gone and you can't get it again. Just take this Naprosyn and rest and ice and you will be fine." So I still thought I was in remission and these odd flare-ups were just old injuries being aggravated.

Then, just after my 30th birthday in 2004, I started having lung issues. I lost my voice permanently and suddenly had severe multiple chemical and scent sensitivities (MCS). As lung disease runs in my family, I was tested for everything lung related and was told I had every thing from COPD, to acid reflux, to it was just all in my head. This was even though I had small masses in my lungs showing on CT's. I gave up going to Dr.'s and just lived my life, as debilitating as it was.

About a year ago, the lung issues were worsening and Renzo persuaded me to try once again. I went back to a respirologist (strangely enough, he was the one who told us Renzo's mom was going to die--that was a fun visit as you can imagine). The respirologist said he couldn't help me (wow big surprise). He adjusted my inhalers, and said to avoid all chemicals and scents (easier said than done). He did however, re-do the CT, but this time a high resolution one, just in case something was missed. When I returned for the test results, he said he had looked up my old hospital file and wanted to know why I never told him (or any other respirologist for that matter) that I had RA. I said, "Well I had the juvenile version and I went into remission at age 20 and was told I didn't have it any more. Besides, what does a joint disease have to do with lungs, voice and chemical sensitivities?" He said, "My dear, I don't think you are in remission. You need to see a rheumatologist". I thought he was crazy (as he never did explain his reasoning). But I went back to my family doctor and requested the rheumatology referral. Coincidently, around the same time, I tore the tendons that run from the elbows to the wrist in both arms so at the same time, I got a referral for physio. The waiting list for the rheumatologist was 12 months. I didn't really care as I didn't see what the big issue was. In the mean time I went to physio. I decided to go back to the one I saw for as a kid as I figured she knew me best and could treat the tendon tear a lot faster as a result. She too asked why I hadn't seen a rheumatologist in 15 years. I asked her why is everyone telling me to go? She said, "Because it explains everything. You need to go ASAP. You can't keep living like this!". Well, with a 12 month waiting list there wasn't much I could do but wait. And during the 12 month wait, I not only lost use of my elbows and wrists, but my shoulders were down to 60 degrees rotation, and both knees and hips were so bad that walking or sitting for long periods was difficult.

Finally this past March, I got to see the rheumatologist. When I arrived, I had to fill out a questionnaire and found I was circling everything on the list (including voice loss, skin issues, eye issues and chemical issues). But I still figured that this doctor, like all the others before him, would just say I'm fat and there is nothing wrong with me. Much to my surprise, he never mentioned my weight. He explained that once you have RA, you have it FOREVER. That RA also puts you at an increased for OA due to joint damage. He explained that RA not only attacks your joints, but it also attacks your organs, skin, and also can cause chemical sensitivities as the immune system is in overdrive. The arthritis in the name is really a misnomer. But they call it arthritis as, in most cases, the problem is mainly with the joints.

He sent me off for a bunch of blood work and X-rays of pretty much every bone and joint in my body. It took me a full day to get everything done. When I went back for the results a few weeks later, he said, "Well the good news is, this isn't all in your head. The bad news is you have RA that has been untreated for 15 years and there is a lot of permanent damage. Because of all the damage, you also now have osteoarthritis in your knees and hips". My blood levels were off the charts. The X-rays showed damage to just about all my joints. I will end up having both knee and hip replacements within in the next 10 years. The lung masses on that CT 5 years ago, were not benign tumors after all. They were damage from being attacked by RA. The voice loss is due to damage to my cricoarytenoid joint, a joint in the larynx (who knew your throat had joints too?!). I was in tears in the office. He said, "Don't worry, while we can't reverse the damage done, we can try to limit any future damage some." I said I wasn't crying because I was upset. I was crying because finally, after 5 years of being told it was all in my head, and worrying I would die before anyone figured out what was wrong with me; I finally have an answer. Yes, the answer isn't great but I wasn't crazy. I really did have something wrong with me. (You have no idea how great it feels just to KNOW.)

The treatments aren't fun. I'm on Tramadol 300-400 mg daily for pain; Naprelan (an NSAID) 1000 mg daily for the OA, and Methotrexate (MTX) 20 mg weekly, by injection, for the RA. The tramadol has left me with no appetite (I've lost 50 lb. so far and still losing); the Naprelan upsets my stomach so I also have to take Prevacid 30mg to protect my stomach lining. The MTX is the worst. I take it on Friday night, and I lose two complete days from the worst of the side effects. I basically sleep for 48 hours Sat-Sun. The rest of the week, I am exhausted to the point where I have to nap every 4 hours or so. I'm shedding a lot more hair than usual-- the other day I had to pick it out of Bazil's teeth! But I have TON of hair, so I'm not going bald or anything. We just have to sweep every day as my hair combined with the dog hair is crazy on hardwood floors. It has also killed my immune system so I have to be super careful around germs. I'm losing toe nails. My fingers nails haven't fallen off yet but they are starting to discolour and are soft so they will soon follow. I've also had cortisone injections, in both shoulders, knees and hips. (Holy OUCH--not pleasant experience!). I have RA related eye issues requiring that I apply lubricating drops or ointment 5-6 times a day; I also take 5mg of Folic Acid daily.

Even with all these nasty side effects, I'm actually getting better. My elbows and hands are much better. Yes, they are still sore and stiff but I no longer have to ask Renzo to cut my food for me. One shoulder is completely healed but the other one, after 2 months of being perfect from the cortisone, has started to stiffen up again. My knees and hips are still bad but that is the OA and not the RA. They will always be sore, until the damage gets bad enough to replace them. But the cortisone has made the pain manageable. My skin is starting to stop peeling off. (I had terrible psoriasis on my head and feet--also RA related.) My voice is not back BUT it's better. I am understandable now. It just sounds like I have a bad cold laryngitis, instead of sounding like an alien all the time. It will never come back for good. The chemical sensitivities will never go away, but MAYBE in time they won't be as severe. The lung damage is permanent but with the new drugs as well all the previous lung medications, it's stabilized. And just the fact that I now KNOW, makes a world of difference. I'm sorry that I wasn't given the correct info when I was a kid as the lung damage and voice loss could have been prevented. But it's no one's fault. Research 30 years ago, or even 15 years ago, isn't what it is today. They just know more now. I am learning more about this disease every day and am amazed at all the new knowledge and treatments there are out there.

I hope that by telling my story, I can save someone else from going though what I have in the last 5 years. If nothing else, I hope I have empowered others not to give up. Don't listen if you are told it's all in your head. Chances are it's not.

Image © Bob Crimi

A Dream is a Wish Your Heart Makes...

2009-04-23T21:10:00.007-04:00

Usually we take our big vacation for the year in July or August and head to my homeland where I can enjoy clean air and pretend I'm a "normal" girl for a few days. Renzo has been dying to go somewhere warm though so this year we decided to take a spring vacation down south. I haven't been any where warm since we went to Mexico in 2004 just before I became The Voiceless Wonder and as summers here in Rooville are hard enough on me, I've been hesitant to try anywhere warm. We chose a spring trip in hopes of missing the heat waves the Southern States are known for. We spent 17 glorious days away from home (and Davey).

First we spent 7 days in Orlando, Florida at Disney's Boardwalk Inn. One of their Deluxe Resorts, it is in the theme of 1940's Atlantic City. We had heard some complaints about this resort as it does not have a restaurant inside the hotel like most of the Disney resorts but we didn't have a problem. When we booked, we explained my walking issues and were provided a room that was perfectly central to both the lobby and the Boardwalk. We enjoyed the direct boat service from the Boardwalk to both Disney's Hollywood Studios and Epcot and often after dinner would just go people watching on the Boardwalk, enjoying the entertainers, shops and treats. The room was pleasantly decorated, had comfy beds and even a telephone and internet connection in the bathroom! The only complaints we had were they, like all hotels, give you too many pillows (in total each night we had 10 unused pillows piled on the couch) and the television sucks! Yes, people usually don't go to Disney to watch TV, but after an exhausting day, there is nothing better than laying in bed, de-stressing, watching your favorite shows. At Disney however, your TV options are 4 channels featuring Stacey or her Spanish counterpart (I never did catch her name) touring the "Top Seven Disney Attractions" 24 hours a day; 4 ESPN channels and the remainder were kids channels. We don't have kids, nor do we watch sports so we were left with taking bets as to what number Stacey was at every evening before turning on the tube. Oh and that the Canada Pavilion at Epcot is a popcorn stand, but that is a whole other rant!

In the 7 days we managed to go to the Magic Kingdom, Epcot, Hollywood Studios, Animal Kingdom and Downtown Disney. I finally was able to see the Spectro Magic parade at Magic Kingdom that I had missed when we went on our honeymoon 7 years ago. It definitely lived up to expectations. But I think the best of the theme parks was Animal Kingdom. We went twice just so that we could take the Safari tour again. The animals were stunning!

Unfortunately, we were in the middle of a heat wave. It was 34C everyday. No humidity thankfully but the 34 degree temperature jump from home was a little much for me. My lungs hung in there; I only had one day where I had a hard time breathing but it was too much for my joints. I didn't take the Rheumatologists' warning seriously and walked way more than my alloted 30 minutes at a time. I did end up needing a wheelchair for a couple of days but once the emergency stash of steroids kicked in, I was able to walk on my own as long as I followed the rules. The great thing about staying "on property" (and about park hopper passes) was that I was able to go back to the room at anytime for a rest before continuing on with my visit. I'm still paying for my stupidity a month later, but the trip was worth it (although my physio therapist may not agree).

After Florida, we spent 3 days in Myrtle Beach, South Carolina. It was much cooler there (a comfortable 20C) and we had a 19th floor ocean front apartment at the Sandy Beach Resort. If you ever go to Myrtle Beach, I can't recommend this place enough. It is a 100% smoke-free facility (a rarity for MB), with stunning apartment suites that have full kitchens and in-room laundry. We liked it so much, we are going back in October. My only caution for my MCS pals is that their floor cleaner is quite strong. We only had them clean the room once out of the three days and left the balcony door open for a few hours while we went shopping to air out the room. When we go back in October, we will actually tell them not to clean the room during our stay other than to vacuum and change the sheets and I will bring my own cleaning products to clean the kitchen and bathroom if needed. Other than that small issue, I had no problems. I was actually able to use the outside pools without being bothered by the chlorine smell (I couldn't tolerate the indoor pool though). I even bought a cute bathing suit at Target. Who knew you could even get cute plus-size bathing suits, let alone at Target?!

It was a great trip. Being able to be a "couple" again was something we really needed. The dogs had a great time too at Camp JRT aka Pat, the Groomer's house. She has 4 JRT's and 2 Great Danes of her own so they always have a ton of fun and are exhausted when they come home. I think they too needed the break from our day to day lives. All the photo goodness can be found on my Flickr .

Dancing Chihuahua!

2009-04-23T20:25:00.002-04:00

If music be the food of love...

2009-02-14T19:14:00.003-05:00

Valentine's Day is here once again and that means it's also Feast of Love time in 'Rooville! This year did not disappoint. There was lots of yummy eats, wine and the house to ourselves.

The menu I made for The Boy was jumbo tiger shrimp served with a chipotle cocktail sauce; arugula and baby spinach salad topped with pomegranate seeds and goat cheese tossed in a maple dijon vinaigrette; lobster ravioli fra diavolo; and herb roasted rack of lamb served with stuffed portobello caps topped with smoked mozzarella and cumin roasted baby potatoes. He seemed to enjoy everything; he even ate the leftovers for lunch the next day.

I was treated to bruschetta on grilled flatbread; Tuscan bean soup; and chicken parmigiana served with tortelinni in spinach pesto, gnocchi in portobello goat cheese alfredo and linguine in tomato pancetta arabiatta. All my favorite dishes in one meal. Divine!

Dessert was supposed to be Choco-Hoto Pots served with fresh berries and whipped cream but we were too full to eat them. Gee, I wonder why?

My birthday came early this year...

2009-01-22T12:03:00.005-05:00

My mom emailed me the other day about an article she saw in the local community paper. I had to read it twice to make sure I really was seeing that 'Rooville now has a chemical free hair salon. It sounded too good to be true.

After Dtox closed in August, I was certain I would never have a hair cut again. Not that flying to Edmonton for a hair cut was really all that economical but it was better than nothing. Then this article comes out of nowhere, in a paper I usually never read (note to self: read community papers more often!). If fact my mother also never reads this particular paper. She was just bored one afternoon and picked it up off the coffee table. It must have been fate!

The Secret Garden Hair Studio is a home based, eco-friendly, chemical free hair salon in an Ottawa south west suburb; conveniently located just 6 minutes from my home! Owner Kim,trained in London, England, has been a hair stylist for 19 years. She has previously worked at the He&She Hair Studio before opening Blades Hair Studio in the mid-80's. In 1989, when her son was born, she decided to move her salon into her home basement. In 2008, she designed a beautiful sun-room studio off her kitchen, overlooking the back garden filled with many flowers and wildlife.

Upon my first visit to this little oasis, I found it to be warm and inviting and most important scent and chemical free. All products used are chemical free and the water is chlorine free. It is important to note that some of the products are scented (the shampoos are lemon and coconut scented) so it's not 100% safe for me but everyone has different triggers. I was able to bring my own shampoo and conditioner and have no issues. While I was there, I did a test smell of the highlighting solutions and they have no scent so I will be going back in March to get my colour re-done.

Now I realize that a hair cut is no big deal to most of you. However those with MCS will understand that even the simple task of getting your hair done, isn't so simple for us. This salon opening so close to my home is huge. I can regain a little bit more normalcy in my life and to me that is everything.

Mask Envy...

2009-01-16T15:33:00.007-05:00

I've been quiet lately (no pun intended) but I haven't abandoned the ol'blog. I've been having an RA flare-up since the summer and other than a quick article post here and there, I haven't really been able to type. I have finally been given some better medication though so hopefully things will settle down soon.

Recently, my blog has been found by a few

Google Searchers looking for info on masks for MCS. I've mentioned my mask use in the past, however it occurred to me that I haven't talked about what I use to keep myself breathing clean.

I currently use the Respro Aero mask. It's entirely hypoallergenic and provides Hepa type filtration against chemicals and particulates. In Canada, the Aero mask and filters can be ordered from Quorum Allergy .

Previously and as pictured in this post, I was using the Respro Techno mask. It provided the same quality of protection as the Aero mask I now use, however it is made of neoprene, which I have since found I am allergic to. In Canada, the Techno mask and filters can be purchased at Mountain Equipment Co-op.

Filters should be replaced every 30 days or after 69 hours of use, whichever comes first. It is also good to note that the Techno filters can also be used in Aero mask if you don't require your mask to be 100% hypoallergenic. As so far the Techno filters don't seem to bother me, I use them in my Aero mask simply because they are easier for me to buy at MEC in Ottawa. When I do plan ahead, I order the Aero filters from Quorum but sometimes I simply forget and need a replacement ASAP.

When looking for a mask, it really is all about personal preference and comfort. Everyone with MCS has different triggers so you need to choose the mask that is best for you. Good luck. Life wearing a mask isn't fun, but at least it's a little bit safer.

He really does love me! (AKA a bouquet for the scent sensitive)

2009-01-15T17:35:00.005-05:00

After a bad day at work, the boy surprises me with a bouquet of chocolate covered strawberries and bananas

Edible Arrangements are awesome! A great solution for those of us who can't have flowers.