Wednesday, November 30, 2011

The Tinks Turn 6

   
Yes, they do. Today, in fact. I don't know how they went from this to who they are today, but I'm enhjoying every minute!

We had a wonderful party for them a couple of weeks ago. Herewith a few pics for the day.

I was in charge of distracting the wee monsters while everyone else were preparing the room. This naturally meant that they took turns riding on the back of my wheelchair while I chased the other one around the room(apparently with a maniacal expression on my face)

 
 Photo by David

I had no idea that Morgan Monkey Girl rode this way until I saw the picture

Photo by David
 
When that started getting a little old, we gave them their present: two pairs of wings. And then I chased them around the room while they pretended to fly. Throughout the day, several adults also tried out the wings. Okay, so almost everybody tried the wings and wished that taking in adult sizes.


Liam was sure that his were owl's wings and spend a significant amount of time communicating in owl, saying "hoo" to everything.


There was cake and games and piggyback rides



 

feats of strength, impromptu shoulder massages and great conversation. An absolutely perfect day.








 Happy 6th birthday, my lovies! 
   
Photo by David


Monday, November 28, 2011

Disabled? Disposable. Help Save the Hardship Fund

   
I had a plan for this week. I’ve had that plan for about a year. Because the International Day of People with Disabilities is on December 3 and for the last couple of years, that meant that I go to Variety Village to take part in the City's celebration of this day. It's a terrific day that celebrates the achievements of people with disabilities.There is space for artists with disabilities to exhibit their work, a lot of networking and awards recognizing the achievements of people with disabilities. Due to an injury, I had to miss last year's fun, but was determined to go this year.

And then Rob Ford got elected. Which means this year, The International Day for People with Disabilities will not be celebrated by the Cityof Toronto. Sure, there'll be a proclamation and the Access Award will be given out during the City’s celebration of Human Rights Day, held in the Council Chamber. Which I thought wasn’t accessible, but maybe they've changed that in the last year or so?

Anyway. Our esteemed Mayor got elected on promising to balance the budget by savings made in. attrition and efficiencies - in effect, cutting the gravy that he claimed was so prolific at City Hall. He said there’d be "no service cuts. Guaranteed." Except, it turns out there isn't that much gravy. And since the aforementioned esteemed Mayor canceled a number of revenue generating programs and taxes instituted by our previous esteemed Mayor, he’s having a bit of a problem finding the promised reductions in the budget. Enter the service cuts.

To be fair, the celebration of The International Day for People with Disabilities was not included in the budget and therefore it was not the decision of our City Council to cancel it. Likely, it was a decision made by staff because they have to find a significant amount of money to reduce their budget. And I guess this was an easy one - after all, it was for a very small group of people, one that traditionally doesn't have a lot of power or makes a lot of headlines.

But I'm not bitter.

What does make me spitting mad and about to jump on the barricades is the next trick in what I'm beginning to see as a war on the vulnerable. Because one of the service cuts that is being considered in the budget on December 7 is to get rid of the Hardship Fund.

What is the hardship fund? It is $900,000 a year set aside for the working poor, people with disabilities and seniors to access when they need medical equipment not covered elsewhere and which is too expensive to afford when you're living close to the bone. Things like hospital beds or lifts that enable you to live in your own home instead of in an institution. It costs the taxpayers of Toronto 60 cents each per year to take care of the most vulnerable in our city, to help them stay in their homes and to help them through medical crises. And 23 of the elected on our City Council voted for axing it. Charming, no?

Because, I suspect, the Fund serves a very small group of people, one that doesn't have a lot of power or traditionally make it into a lot of the headlines.

Our libraries did. When significant cuts to libraries were on the table, the citizens of Toronto rose up en masse to fight back. One of the citizens was Margaret Atwood, a staunch defender of Toronto libraries. It helped that Doug Ford, our esteemed Mayor's brother, also a Councillor and a bit of a bull in a china shop, claimed that he wouldn't know Margaret Atwood if he passed her on the street, that there were more libraries than donut shops in his riding (quickly and easily disproved) and that nobody would care if they closed (boy, did people care). And best of all, because people cared and told their City Councillor in personal letters and emails, plus over 40,000 signatures to a petition, all of a sudden Councillors cared, too. Because they cared to be re-elected and wouldn't be if they voted to close the libraries.

Toronto's citizens with disabilities don't have a Margaret Atwood. I wish we did. I wish we had a beloved and iconic public figure who would join the fight and who could be as effective as Atwood was in bringing attention in the media to this. Instead, we have Social Planning Toronto joined by a lot of individuals in this smaller group and their friends who are fighting to protect the Hardship Fund. And I worry that there won't be enough of us to provide the kind of pressure our Councillors need to do the right thing. To remember that we are all citizens,not just taxpayers. And citizens take care of each other.

Any one of us could need the Hardship Fund tomorrow. One in two people are touched by disability, either individually or because a family member has a disability or medical condition. Disability is the only minority group you can join at any minute with no warning. We all have aging parents who we'd like to keep at home as long as possible. Regardless of who you are, your ability or age, you have a vested interest in protecting this Fund.

There is a week left until the meeting where Council will decide whether to cut the  Fund. Is it enough time to get 40,000 signatures on the petition to save the Hardship Fund? We'll never know unless we try. And while you're at it, please share it everywhere you can, e-mail, Facebook, Twitter. If you don't live in Toronto but know somebody who does, send it to them. Please also consider writing your Councillor a personal note to let them know you support protecting the Hardship Fund (Council contact info here). CC the Mayor. Sign up for Social Planning Toronto’s email list. Make some noise. We need everyone, disabled and able-bodied, to join the fight.

Let's make some headlines!
   

Wednesday, November 23, 2011

The Knife's Edge

   
Monday morning, I woke up with a pain in my right big toe. Well, not exactly in the toe itself, but just below the bottom joint. I wiggled it, inspected it closely and then went about my day.

It continued to hurt, just at that spot below the bottom joint and it made me nervous. In 2004 when I ran out of my hoarded store of Vioxx and the RA came roaring back, it did so in the bottom joint of the big toe on my left foot. It started hurting and swelling just below that joint and within 24 hours there was an almost audible pop when the fluid filled the joint so much that it felt as if it was forcing apart the bones.

Granted, what happened Monday morning wasn't in what I've come to consider my canary-in-the-mine joint, the one that started the last, big flare. And it wasn't in the one that’s taken over, tendon problems having become the new sign that I’m low on Humira. So I checked other joints, went though a couple of moves and tricks that usually mean I’m doing well and passed all of them with flying colors. But the foot kept hurting, kept throbbing, kept being insistently there in a way I haven’t felt in years.

I didn’t tell anyone all day, because saying it out loud would make it real. In the late afternoon, I had my Mandatory Rest Period, but didn't rest much because of the pain in that toe.  I looked at my foot after getting up from my nap, noticed what I thought was a bit of swelling and then didn't look again, just being aware of how much I could feel my sandal around that area. Went to a meeting and was aware of my foot, came home, watched the rest of the Dancing with the Stars finale and was aware of my foot.

And then I told my mother and after some discussion, we agreed it was a fibro flare. And then I told The Boy and finally looked at my right foot, feeling safer having him there with me on the phone. And it had swelled some more, but sort of oddly, sort of on top of the foot. So I theorized a light sprain, but underneath all the logic was the panic screaming the Humira has stopped working and it’ll keep swelling and when I wake up tomorrow, I’ll be in a full flare and an incoherent constant moan of please no, please no, please no. And then I ended the call because I couldn’t focus on anything but the gibbering fear and tried to distract myself with season one of The Big Bang Theory, not really succeeding.

My attendant came around 10 PM and I transferred to the toilet, not feeling pain and you would be in pain if you bore weight on the foot, wouldn’t you, if it were the joint? I sat there, absorbed in the sensation of a buzzing throb in time with my heartbeat, looking at my feet, trying to see if the swelling was getting worse. Afterwards, I changed the way I sat, put my left heel on top of the right foot and it hurt and all of a sudden, I thought I knew what had happened. That maybe I’d sat like that for 2 hours during the parade and that maybe the cold and the position and being tense because of how mad I was at the idiots who cared nothing for other people’s views had strained my foot right there. That maybe it actually was a slight sprain. The ache pulling up my leg in a line from the toe by the ankle and towards my knee certainly felt like a sprain I’d once had.

That was the logic, but the pain was pretty bad and the throbbing was pretty bad and my foot positively cried out for an ice pack (impossible because there wasn't anyone there to hold it against the foot) and I freaked out some more and then, around midnight, it eased. Eased enough that I could ignore what was going on. Eased enough that the panic subsided.

When I woke up yesterday morning, there was no pain, not until I'd gotten up and moved around and that was a good sign. I saw my family doctor and after some discussion, we theorized a slight sprain. I am, however, watching it like a hawk and if it hasn't improved by early next week, I'm calling my rheumatologist. And in the meantime, I'm sitting on the panic.

All it takes is a moment. A moment of odd pain, a moment of the inexplicable - and not the usual inexplicable that comes with fibromyalgia - and you realize that your life is a house of cards. I may have talked about getting used to the meds working, that I've shifted from expecting it all to end any minute to believing that it won't and that I feel much more hopeful for the future, having faith that if one medication stops working, there are others. And then there's that moment where you think your medication actually has stopped working and it is nothing but blind fear. A screaming howl of panic that it is all over again, that it will be derailed again, that all this wonderful treasure of a life that you have found again will be lost. And what if none of the other meds work and what about the side effects and in a split second, the grief of losing your life is dropped on you like a freight train and it becomes impossible to breathe.

Having a chronic illness is like walking a knife's edge. The firm ground beneath you isn't firm and isn't ground at all. It is infinitesimally thin and you walk along it in a precarious balance. All it takes is a puff of air and you will be cut to pieces. 


I'm thrilled to be nominated in the Best Blog Post category of the 2011 Canadian Blog Awards for Sensitive to the D-Word. You can see all the first-round nominees in that category and vote here and all categories here. There are some excellent blogs on the list. You don't have to be in Canada to vote.

 

Monday, November 21, 2011

A Complicated Santa

    
Yesterday, Santa came to town and you all know how I love the annual Santa Claus Parade. This year, though... There's a rant coming and I'm not just trying to work one in every time I post, but... OK, let's have some fun first. And a lot of it was as delightful as it's ever been.

Canada Post collected letters for Santa (I can't begin to say how charming this is)


The Toronto Police contributed an old form of transportation for police officers


And a so-old-it's-new-again form of transportation


There were bands


and Bugs


More horses

 
the Muppets
 

Very deliberately not making comments about cops and donuts here


Cheerleaders

 

And the U of T Engineering band

The Royal Canadian Horsie Police


And now for the parts that complicated matters. I have attended every Santa Claus Parade for the last 16 years and have always had a spectacular time. Everyone were there to have a good time, to have a chat with neighbors, to get swept up in the childlike joy of the day and everyone always had a sense of making room for each other. It was a communal experience. In the last couple of years, it has become more like competitive Santa watching, with people jostling as close to the action as they can, with no awareness or concern for the people there blocking. People such as myself or, more importantly, children. It seems to be about getting your kid to the front and hang the consequences. Yesterday, a man and his family came late.to the proceedings. He had a contraption on his shoulders for his child to sit in and was therefore taller than everyone around. Yet, he parked himself in the front. And when someone who had been there since well before the parade started with two children who now could see nothing, pointed out to him that he was blocking everyone's view, he actually said "I'm sorry, I didn't realize." Seriously?

for much of the parade, this was my view


again, seriously? This woman with her stroller - because her child is too young to know what's going on - came after the parade had already started and placed herself in front of me and several children. She seemed slightly offended when we pointed this out.  Which we had to do over and over again to more people (all adults) than I could count and it just got more and more upsetting. We got the police officer who was doing crowd control in this area in on the game and I cannot tell you how many times he told people to not block the view for the kids. I have always loved that so many adults come to this parade, even when they don't have kids, but in the past couple of years, they seem to have forgotten that they are taller than children and not care who they block, as long as they get to see everything.
 
And it made me mad as a hatter. At one point, The Boy asked if I was cold and I told him that the rage was keeping me warm. Later, I commented on how this turned into the Bipolar Parade, because I alternated between wanting to throttle people and going "ooh, look at the penguins/Muppets/band!"

And then the screaming started. This is how you know that Santa is on his way - his arrival his heralded by thousands of kids (and adults) screaming as loud as they can. He's bigger than the Beatles. So we all rush up as close as we can, waiting to wave to Santa and for him to wave to us and say "ho, ho, ho." And here are the reindeer and here's Santa and everyone's waving and yelling and so excited (yes, the adults, too) and....

Nothing. Not one "ho, ho, ho," not one wave. Because Santa is busy taking pictures.


Okay, I guess he's allowed, but surely, he'll put down the camera and say something in a second.
Nope. Nothing.   


I'm not quite sure how you'd explain that to a child.

Update: I tweeted this post to the Santa Claus Parade organizers and they responded right away saying "Hi Lene, 1st, we'll take away the camera from Santa. 2nd, we'll post etiquette to make sure kids get the view they deserve." Couldn't have asked for a better response!
 


Friday, November 18, 2011

A Question for the DIP Deniers

   
I'm not RA for a long time and I've now worked in a job that exposes me to a lot of news about RA for several years and yet, I still learn new things every day. For instance, the DIP debate.



The DIP is short for the distal interphalangeal joint. Which is the joint on your finger just before the nail.



(And I can't say anything that has the word phalanges in it without thinking "dancing phalanges!")



Anyway, back to the point of the day. For as long as I remember, I've known that swan neck deformities are classic signs of RA. I developed them very early on and most of the people I've met who had RA in their hands and fingers that had not been well controlled also had them. It's similar to secret handshake for people who can't shake hands - a quick glance will tell you whether the other person is "in the club."



And what is this swan neck deformity? The American College of Rheumatology (ACR) has a picture and drawing in their image bank describing that it "may develop as a result of synovitis" (i.e., inflammation of the synovium, the thin layer of tissue that lines the joint and which becomes inflamed and RA). The joints involved include metacarpophalangel distal interphalangeal and proximal interphalangeal joints.



Right. Too many polysyllabic words. Basically, it looks like this (pardon Lucy being indelicate with her toilette in the background):


 

Unmistakable, right? It's pretty clear to me that this can't happen without some sort of RA involvement of the DIP joint.

Except a couple weeks ago, I discovered that there appears to be some sort of debate about this and I made a mental note to do some research. And forgot, because it was a bad fibro day and my brain wasn't working. Then last week, Kelly over at RA Warrior posted about it, nudging my thinking even more. Because guess what? All kinds of people are saying that there is absolutely no DIP involvement in RA. Even Johns Hopkins says so. John's freaking Hopkins! They say that "rheumatoid arthritis does not affect the distal interphalangeal joints."

Maybe I don't have RA after all... Does that mean I'm cured?
   

Thursday, November 17, 2011

Social Autoimmune Caregiving Media

   
It's hard to sum up these two very different posts I wrote for HealthCentral this week, hence the mangled title. 

One was about how the RA community connects using social media:

"RA affects one percent of the population. Without actively searching, you'd be lucky to run into another person who lives with the same chronic illness you do. Yet, finding someone who knows exactly what you're going through is on the top of all our wish lists. When I was growing up, the only place I met other kids with JRA was in hospitals and doctors' offices. Even now, I've only met a handful of people who have RA in the part of my life that takes place face-to-face.

Enter the Internet. It has had a revolutionary impact on our ability to connect, person to person and community to community, creating a larger tapestry of people living with RA and other autoimmune diseases."

The rest of that post is here.

November is Alzheimer's Awareness Month and several of the HealthCentral writers were asked to write about various issues related to Alzheimer's. My contribution was an exploration of the link between caregiving for someone with dementia and a higher risk of developing an autoimmune disease:

"Taking care of someone who has dementia is hard (this might be the understatement of the decade). This type of caregiving causes chronic stress so intense that it has a direct effect on your body's ability to support you. Alzheimer caregivers have a higher risk of depression and heart disease, have a harder time fighting infection, their wound healing is delayed and vaccinations don't work as well as in others. These last three aspects indicate an impaired immune response. What happens within your body when you are under this kind of chronic stress? And what is the connection to autoimmune diseases?"

It was a really interesting post to write and I learned a lot. You can read the rest of that post here.
   

Tuesday, November 15, 2011

2012 Calendar & Holiday Stuff

   
I forgot again. Forgot how long it takes to make the calendar, the cards and all the rest. But being a bit stubborn (!) , I persevered and here it all is. A little late, but here.

There's a calendar


and holidays cards, some of which have a greeting inside (a request from a customer last year)





 There are new magnets, a really cute festive button, a pirate ship on a mousepad and new prints that may be perfect for gift ideas. Taken a gander at the shop to see for yourself.

Happy that time of year again!

  



Monday, November 14, 2011

99% Accessible

   
I've written before about how fascinated I am by the Occupy movements in general and Occupy Toronto in particular and I'm about to go on about it again. But this time, it's about a particular aspect of Occupy Toronto. 

A few weeks ago, I was wandering around the park checking things out when I saw this
 
 

An accessible porta potty. I stood (metaphorically) in front of it for a little while, not because it reminded me of the state of my bladder, but because I was agog at what was happening. And then I wandered further and saw this


And if they hadn't had my support before, as of that day, I was firmly in their camp. Well, not literally - accessible porta potty notwithstanding, camping is still not feasible for me.

A few days ago, I ran into one of the protesters, a woman named Emily who uses a scooter (she has a blog, but alas, I don't know where it is - Emily, if you read this, please send me the link). We chatted about the movement in general and it wasn't long before she told me that she was on Occupy Toronto's accessibility team. Yes, they have an accessibility team. I wasn't completely surprised because they had already proven to me that they were serious about including the disabled part of the 99%. Emily and I talked about accessibility, about our esteemed Mayor and his team not being excessively disability friendly either now or in their past (before Rob Ford became mayor, he demonstrated his sensitivity to this group). She told me that whenever she approached one of the many media teams that prowl the camp every day, hoping to discuss the accessibility aspect of the movement with them, they would turn off the cameras. And then she took me on a tour of one of their yurts, donated by OPSEU. I never knew that being inside a yurt was on my Life List, but it turns out it was. And the reason I could get inside was because they had built a ramp.

 

Since that day, I've been thinking. Thinking about what is says about our society that one of the best examples of an integrative efforts is a bunch of people living in tents. People who have their own struggles, who probably don't have much money, but who are determined to ensure equal participation by all. And then I thought about how the majority of corporations don't care about people with disabilities until a law says they must. About politicians who drag their heels passing laws that protect and enable people with disabilities. About Toronto's hardship fund that helps seniors and people with disabilities get the kind of equipment they need and can't afford and which is now on the chopping block in the upcoming budget. Because our esteemed Mayor is determined to cut everything that makes our city great.

And speaking of Mayor Ford. Late last week in a scrum, he mentioned how it was time that the protesters move on. That he was representing the wishes of taxpayers, went on about how his office had been getting calls and when Rob Ford says that he’s been getting calls from taxpayers, it’s usually is a sign that he's about to do something rash and drastic. So I called his office to tell him that I was a taxpayer, too and I thought Occupy Toronto should be allowed to stay in the park. To which the minion I spoke to said that the mayor had no say in the matter, that it was completely up to the police. This despite Ford repeatedly saying he was "developing a plan" to deal with the issue.

Which brings me back to why I find this movement so fascinating. Because of how uncomfortable it makes a certain segment of society. It is as if by exercising the right to freedom of assembly - a right enshrined in various constitutions - and sticking around, they offer a challenge to a very deep belief about what one is supposed to do. So many people (politicians included) have said "they've made their point, now it's time to move on" and that statement in and of itself is proof that these people don't understand the point at all. But they want them to go away, to stop questioning the status quo, to stop challenging the power structure. They want them to go away so badly that they will jump on the slightest reason to move in and forcibly erase this challenge. There is much talk about drug and alcohol use in the camps and I suspect it is what will be used as an excuse to clear the park (even though the Anglican Church, co-owner of the park, supports the campers). Instead of fanning the flames, I wish clearer heads would prevail and realize that if you have a few incidents related to drugs and alcohol out of a camp of 500 people, then maybe the problem isn't all that different from the rest of society.

Here in Toronto, the movement is very clear that they are camping on church grounds and that this needs to be respected



According to a few I've spoken to, they do their best to deal with it, but they are facing some challenges. This park has always been a haven for the homeless and I could imagine that having a camp that provides regular meals is a bit of a draw for the disenfranchised and needy. I've heard that recently, there was an overdose in the camp, but someone found the person and they didn't die. I wonder if they hadn't taken the drugs there, would they have overdosed and died in an alley, a rooming house or alone in another park? But those overdoses don't make the headlines, do they?

Maybe we should all - and that includes our City Council - take the time to listen to the message instead of being so anxious to make it all go away.

And in the meantime, I'm going to go see the yurt one more time. Because I can. There’s a ramp.

   


Thursday, November 10, 2011

In Which I Re-Learn the Basics of Living with RA

  
In my latest MyRACentral post, I give the internet an opportunity to laugh at me:

"I consider myself a fairly smart person. It's not something we're supposed to say, just as we are not supposed to remark on our own gorgeousness, but there it is. I'm certainly not in the same league of attractiveness as supermodels or Hollywood stars, but feel fairly confident in saying that my brain works pretty well most of the time.

And then there are the moments of sheer unadulterated and profound stupidity."

You can read the rest here.
  

Wednesday, November 09, 2011

Figments of the Imagination

   
Jenni over at ChronicBabe had a plan for her month-long sabbatical: ask for guest posters. My contribution appears today and is cross-posted here. Thanks for including me, Jenni!
 
"I'm so relieved I'm not crazy!"

Someone I know has just - finally - received a diagnosis of rheumatoid arthritis. When she told me what happened in the appointment, she mentioned her relief that she hadn't lost her mind or made it all up. This despite having spent months experiencing obvious physical symptoms that something was Very Wrong indeed. I'm pretty sure most of you are nodding in recognition, having been in that place of thinking you'd lost your mind.

That's when I started wondering why it is that we doubt ourselves so much. And I think I’ve found a few reasons,

Denial Ain't Just a River in Egypt 
This is a no-brainer. Nobody wants to be sick. No one wants these mysterious symptoms to be an indication that there is something going on, something that likely can't be fixed by an aspirin and a Band-Aid. The only explanation is that it ain't happening, not truly. So you take a trip into denial, complete with a London Bobby standing next to you at all times, officiously exclaiming “move along, nothing to see here!”

At some point after you’ve received a diagnosis, denial leaves the building and is quickly followed by the other four stages of grief: anger, depression, bargaining and acceptance. Acceptance is easier when accompanied by chocolate. A lot of chocolate. 

My Body Has Been Taken Over by an Alien 
When you wake up in the morning and don't feel like yourself, what are you supposed to think? Where once you awoke feeling rested, now you feel as if you haven't slept in weeks. Where once you had energy, now you feel as if you're moving in treacle and then there's the pain keeping up a steady stream of complaining like your own personal (and portable) Greek chorus. Clearly the only logical reason is that you have been hijacked by an alien, here to do an advance reconnoiter before the mothership arrives.

We get used to our bodies feeling a certain way. When they don't and there's no logical explanation such as the flu or food poisoning, you start questioning reality. Are you really feeling what you're feeling? Is it an alien or have you lost your mind? 

Dr. Know-It-All Doesn’t Know It All 
We don't just have to fight our own jumps into outlandish explanations for the strange symptoms. Often, we are helped right along by doctors who are incapable of saying those magic three little words "I don't know." Instead, they claim you're perfectly healthy and those symptoms? Well, maybe if you found a way to deal with stress, try yoga or perhaps a spot of counseling would help. Because y’know… the medical literature is full of people who have cured chronic illnesses like rheumatoid arthritis, MS and lupus with the powers of their mind. Sadly, women are still more likely to get this type of advice, so it's pretty obvious that although we may have come a long way, the medical profession hasn't.

At the end of the day, trust your instincts. If you gut tells you that there's something wrong, believe it. Don't ignore your symptoms, but do ignore doctors who pat you on the head and tell you there's nothing wrong. Find another doctor and another one after that, if necessary. It is your body and you understand better than anyone the messages it sends out. Don't let anyone tell you that it's all in your head.
   

Friday, November 04, 2011

Inside the Miracle

    
Last weekend, a user on MyRACentral named Laurie posted about the change in her life brought about by Humira. Less than a year ago, two separate doctors told her that she'd never be strong enough to do the physical things she loved, would never kayak or hike again. So she sold her kayak and I can only imagine the grief that followed. Actually, I can imagine the grief, because I've been there, too. A different expression of losing what was an essential part of you, but I suspect the same feeling. It's a devastating sadness, this necessity of redefining who you are, of giving up something so much part of you that you may as well amputate a limb. The phantom pain echoes as you move forward, becomes scar tissue, a reminder of what you no longer have.

But this is not about sadness, this is about joy. Because in that post, Laurie tells of confounding the soothsaying of the doctors and after five months on Humira getting back into a kayak. And every time I hear a story such as Laurie's, the miracle of the meds that are now available hits me again. It is never far away, this awareness of how revolutionary the change in treatment has become - we are at a place I thought I’d never see in my lifetime and every year, more changes happen. More drugs, more tests, more changes to the approach to treatment and because of it, the goal is now remission. Actual remission. It boggles the mind.

And when I hear a story such as Laurie's, it reminds me of the change in my own life. Because as I said in my comment on her post, after seven years on Biologics, I am still getting stronger. Enbrel took me the first bit of the way, gave me back my life. And then Humira jumped in and created its own miracle, changing my life every year, sometimes every month. Because I am still getting stronger, am still regaining parts of my life I thought I'd lost forever.

Because of Humira, I am allowed to take care instead of being cared for. Because of Humira, my belief that I would never have the strength and energy for everything that is part of a romantic relationship again was proven wrong. Because of Humira I have a job and an almost-finished manuscript with my name on it. It is as big as that and it is as small as the ability to buy my own groceries, to go down to Sugar Beach, to play Angry Birds and to complain about being too busy.

And it is more than that, more than this embarrassment of riches that has become my life. It is a gift that has changed how I view life and how I fit within it. This gift has made me a deeply happy person even during the times where I am bashing my head up against limits. It has given me the gift of believing - really, truly believing - that it all will not be taken away tomorrow.

And there is more, something that is difficult to wrap my head around. Because Humira has given me back possibility. In helping me get stronger and helping me regain what I thought I had lost, my expectations about where my limits are, where the line is between what I can and cannot do keeps changing. Keeps growing, keeps moving further than I ever thought possible again, keeps proving me wrong in my assumptions about what is possible. And it means that now, when I speak of things I cannot do, there is a small voice inside my head that says for now. That says you never know.

I live within a miracle every day. And it comes with a joy and awe so profound there are no words to describe it.
 


Tuesday, November 01, 2011

Sorry for the Inconvenience

  
I was on a small excursion, among other things returning books to the library and while I was there, I picked up another one. After getting checked out, I moved over about a meter and a bit to get out of the way so the person behind me could get to the counter and talk to the librarian. This meant that I was sitting in front of the door, not quite all the way there, but close enough that there was about the width of a person between me and the automatic door button. I was wrangling a number of things on my lap, trying to put my library card back in my purse and after that put the book in a bag, both of which were also on my lap.

Suddenly, a woman swoops in and presses the button for the automatic door.

"There you go!" she cheerily, clearly pleased with herself for helping out.

"Thanks!" I look up and smile. "I'm not quite ready yet," and I bend my head down to look at the pile in my lap, still trying to get my library card into its slot.

"Oh jeez, do I have to hold open the door now?" she says, the cheer tinged with that clipped tone that means the speaker is irritated.

"No thanks," I say, "I'm not quite ready yet." I'm still smiling although the on the inside, my eyes are starting to roll.

"I'll go hold the door," she sights and strides past me, through the inner door and outside, holding the other door open. The door that is standing open due to the automatic door opener still being activated. She looks expectantly at me, her smile now rather brittle.

"I'm not quite ready yet, but thank you!" I say, still baring my teeth smiling and wondering if perhaps I'm not actually speaking out loud. When it becomes clear I’m not going to leave on her schedule, she gives up and comes back in, joining the line-up for the librarian. She very decidedly does not look in my direction.. I close my purse and put the book in the bag.

And then I push the button for the automatic door opener with my foot and leave before she gets it into her head to help me again.