Friday, November 20, 2009

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

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.

Wednesday, July 15, 2009

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.

Friday, July 10, 2009

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.

Saturday, June 20, 2009

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!

Friday, June 19, 2009

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

And now you are an even cuter grumpy old man!

Thursday, June 18, 2009

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

Thursday, April 23, 2009

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 .

Saturday, February 14, 2009

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?

Thursday, January 22, 2009

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. 

Friday, January 16, 2009

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.

Thursday, January 15, 2009

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.