Two Weeks In

What can I say? I feel better.

Walking has become so much easier, I'm not cringing anymore as I make my way up and down the stairs (and we have lots in our home).

My almost constant fever of the last year has all but disappeared. Just one day last week and even then it was quite mild.

I'm still having cardiac episodes, but they're happening infrequently and don't knock me down as hard as before. Still having shortness of breath, but hey - we're only two weeks into this treatment!

The bone pain is still there, but I'd say that it's becoming less frequent. Sharper pain when it does happen - but I'm being optimistic that it means that the Kineret is doing something. And by something, I mean something good.

As predicted by the nurse at the hospital I've started in the last two days to break out in some unsightly (and fairly itchy!) skin reactions at current and previous injection sites. Tolerable so far, they seem to be under control with oral allergy medication - I'm saving the corticosteroid creams for when the itching is driving me totally crazy! And as I've been told - just hang in there for that first month to six weeks and this phase should pass. So I won't be running around in a bikini anytime in the near future - but who am I kidding, I haven't been scaring people that way in twenty years!

The injections are getting much easier. Just part of my daily routine now, no stressing about them. Yes, they still hurt a bit - but I suspect being relaxed about the shots makes them easier than they might otherwise be. Finding a spot that isn't inflamed might be a challenge for the next while though! We'll make it a party game - help me find a spot that doesn't look like I had a fight with a patch of poison ivy and you win a prize - I'll run up the stairs to fetch anything you need! 'Cause I can now!

I'm sure you can tell that I'm pretty darned pleased with the way the Kineret treatment is going so far. And I'm certain this will only get better as the weeks go on!

Seven Injections and Doing Just Fine

I'm getting used to the shots. Really.

After seven of them I find it easy to quickly poke the needle in, push the syringe and before I know it I'm done. Yes, it does hurt a wee bit for about ten minutes but given the improvement I'm already seeing the small amount of discomfort is well worth it.

It's way too early to say if this experiment is a success (I'm still experiencing some bone pain and my local cardiologist heard the pericarditis still active at yesterday's appointment) but I'm quite impressed for what the Kineret has done so far.

For the last year I'd become increasingly arthritic. I was avoiding stairs whenever possible, and walking even short distances was taking me much longer. Plus I'd be paying for it afterwards with significant joint pain and stiffness, especially the last few months when that first swing of my legs out of bed in the morning told me that I was in for a painful day.

Perhaps I'm exaggerating when I say this - but it does feel like I'm bounding about the last few days. I'm easily tackling the stairs with armloads of laundry, even getting some holiday shopping done with my daughter yesterday - and she didn't have to walk at a snail's pace for me to keep up with her!

I'm feeling "normal-ish". I can't tell you the last time that I felt so able. I'm certainly not up to the pace of a few years ago but not being reminded that I'm ill every time I move has been a tremendous blessing.

I've yet to experience the injection site reaction that is very common with Kineret, the nurse at the hospital told me it's likely to start up within a week or so. Just hang in there for that first month when things can get a bit nasty and I should be in for an easier time after that.

Time to just enjoy what's happening right now. We don't know if this will get rid of the pericarditis or help with the bone pain; only time will tell. But I'm feeling very optimistic! What a tremendous Christmas present that's been given to me. To the three of us.

A Breeze

Yesterday I was at the hospital learning how to give myself the Kineret injection. I'm really not nervous about needles and such, but I'll admit the idea of giving myself a shot in the stomach did give me a slight case of the creeps (the injections should be rotated between a few different areas in the body to lessen the skin irritation, the stomach being one site).

So, let's get that first shot I take into my belly! My nurse was so helpful and calming and before I knew it I'd stuck that sucker into my stomach and pumped my precious Kineret in. Next stop was back to my doctor's clinic upstairs to watch for any reaction. At first there was a wee bit of blotchy redness about 2 inches across, but that was gone within an hour. After that, nada. Two hours later, nada. THREE hours later, nada.

Shortly afterwards my doctor came in to review how I was feeling. Any concerns about an allergic reaction were calmed, I was doing just fine and able to go home.

Honestly, I think my doctor is far more nervous that I am about this. He's leaving today on two weeks vacation and wishes I would have waited until his return to start the Kineret. I'd explained that I really appreciated everyone moving heaven and earth to make this happen THIS week - emotionally I needed to be on more solid ground going into 2011. Feeling more hopeful about the year ahead. The last two holiday seasons were quite difficult, the first was a diagnosis of a leg tumour of (at the time) unknown cause and possibly cancerous, and then last year I was in the middle of weaning off prednisone (which took yet another four months to do successfully) and feeling quite horrible day in and day out.

This year I'm hopeful. I know it's way too early to predict anything after just one injection, but I feel very positive that this drug will improve upon my current quality of life (which to be perfectly blunt has really sucked the last few months).

So, yes - I did push my doctor into starting Kineret before his vacation. He's prepared me well with the pager number for the chief resident at the hospital (who's been prepped on what to do in case I get into trouble), we have antibiotics on hand in case of infection, drugs to help lessen the expected injection site reactions due to come along in a week or so. And I'm good with this. My doctor not so much, but he respects and understands how much I needed to do this now. Before a new year begins. How could I let the opportunity for three months of free access to the drug wait any longer than necessary after we've been hoping for this for so long?

For anyone considering Kineret as a treatment, let me say that the shot itself didn't hurt. It stung a bit for about fifteen minutes afterwards, but I'm pretty sure this was because the syringe was only out of the fridge for about ten minutes before the injection and I've heard that it's much easier if the solution has warmed for an hour or so.

So upstairs I go now for my husband to take his first stab (!) at this in my arm, he practiced this morning with an empty syringe on an orange. He's concerned about hurting me, but I know there's nobody who cares more about whether I feel pain - I know he'll do just fine.

Tomorrow

I have my Kineret.

And tomorrow morning I go to the hospital for my first injection. Quite a few people have worked very hard to have this happen before my doctor and his team go on holidays (they leave tomorrow afternoon). The stars have been shining on us over this last week!

Making my Daughter's Boyfriend Feel at Home

Still waiting on info about starting my Kineret. I'll need to be monitored at the hospital when I take my first injection or two (in case of allergic reaction), but my doctor is leaving on vacation for two weeks on Wednesday (my Kineret arrives that afternoon) - we're hoping to line another doctor who's around over the holiday break but so far no luck. You mean nobody wants to cancel their vacation to babysit me? :-) So it looks like there's a possibility I won't start until the new year.

We can't have many visitors here at home, especially at this time of year when the flu is rampant. I pick up colds and infections too easily (and this will be even more the case when I start Kineret) so anyone coming over has to assure us that they're feeling well - and the first place they head coming in the door is the bathroom to wash up. Just the way it has to be.

Most of my socializing is done over the phone, on Facebook or on email because of these restrictions but there is one visitor who comes by quite often - my daughter's boyfriend (BF). They've been together nine months - he knows the drill and takes the necessary precautions to not expose me to illness. I'm delighted that this doesn't faze him - we love having him around!

He's become quite familar with the odd sense of humour that resides in this household (he's very sweetly told us this is the weirdest family he knows!)

Here's an exchange from a few nights ago.

Me to my daughter and BF : Thanks so much for picking up my prescription at the pharmacy this afternoon after school (she's driving now!). Now that I think about it, I should have had you drive me over there to get it myself. Did the pharmacist explain how to use it? She usually takes me aside for a consultation for new meds.

Daughter: no Mom, why?

Me: Actually, I'm a little surprised that she didn't insist that I come in personally given what it is.

Daughter: Really? What is it?

Me: Um...medical marijuana.

I couldn't have timed it better. BF was taking a long sip from a water bottle for that last bit, of which most ended up being sprayed across the room. My daughter caught on right away, she know that I've never had an illicit drug in my life, and don't drink alcohol either. It would take some pretty heavy convincing from my doctor to have me smoking up, even for medical reasons!

We may at times be totally inappropriate, sometimes morbid and almost always a bit goofy in this home - but humour is what's getting us through this together. I'm relieved that BF fits right in!

On Cloud Nine!

Kineret. Arriving by Wednesday at the latest.

Just had a conversation with the drug company liaison (am I ever glad I picked up the call coming from an unidentified telephone number at 9 pm on a Friday night, something at times I'd let go to voicemail suspecting a telemarketer).

I can't believe this is actually going to happen after a wait of almost a year. I can't tell you how badly I needed this news, it's been a tough few weeks. I'd made the decision to (hopefully temporarily) shut down my portrait photography business, and had let my clients know about two weeks ago.

Some very thoughtful clients sent wonderfully supportive notes, but I must say - there were a few responses that really soured what was already quite a painful exercise for me. Several individuals to whom I'd donated portrait packages annually to support their favourite local charities tried really hard to make me feel bad for not being able to donate another package this season. Couldn't I commit to mustering the energy to do just one session in the spring? For just a few hours? (my photographer friends would cringe, no session is just a few hours - most of the work comes afterwards).

Oh, and if I couldn't deliver a portrait session - could I donate something of a similar value ($200 - $500) in its place? Maybe you missed the part about me not working anymore, that also means no income for a self-employed photographer without employment insurance.

And the best one of all. After at least three years of promises "we want to book you very soon for a session, we really love your work!" (emailed to me at least three or four times a year), I received an email right after my announcement in my monthly newsletter saying " that's a shame, we're finally ready to book - can you refer me to another photographer?" Ouch!

The latter part of this post was what I was originally going to write tonight to all of you, it had just been too hard to say right away. My photography means everything to me, I hope that has come across in previous posts. It had just become too hard to hold my camera to my eye for any length of time, and a session would wipe me out for days afterwards. And I'd become so unreliable for a booking, resting up for a few days prior just wasn't working anymore. And I detest being unreliable, but that's my story these days.

But there's hope. I really believe that Kineret will do wonders for me. That I'll be able to work again in a few months. That I'll be able to walk further than a half a block again. That I'll start sleeping again without pain waking me up in the wee hours. That I just might feel a little more like my old self again. Because these days I often lose sight of what normal felt like. I know I'm asking for the world, but just maybe I might get a slice of something great coming my way.

Hanging With "My People"

Last night I was able to make it to the hospital in Toronto to attend the dedication ceremony for my doctor with the help of a family friend who drove me to the train station and my husband who "caught" me on the other end.

What an evening it was. Maybe eighty people were there, mostly doctors, a very generous philanthropist who has donated millions over time to the division that takes care of me, and one patient. Me.

I can't tell you what an honour it was to be there. I had a special role - it was the unveiling of a painting/portrait of my doctor for which I had taken the original photograph earlier this year as a special request (it even has my husband and daughter in it too!). The painting will hang in the newly renamed wing; the one I frequent so often that many of the doctors passing through will wave in recognition when we catch sight of each other.


I was among "my people". Certainly not as a peer, this was a gathering of some of the most respected doctors in this city. But I was among people who get what this battle is all about. Who have great respect for this amazing doctor that cares for me, but also respect me for trying to beat this with a smile on my face.


They understood that it was hard to physically get there last night. They get that this disease has a poor prognosis, yet applaud my efforts to keep a brave face.


With a few exceptions, most people outside of the medical community just don't get it. I could go into examples of how little others often understand the challenges of dealing with a serious illness but I'm going to let someone else speak on this frustration - I recently became aware of a blog written from the perspective of a spouse of a person with ECD. She writes frankly about their experiences with "the outside world", and I have to say although not all of their frustrations are what I've experienced, enough of them were similar that she and I connected immediately in emails that have gone back and forth.

If you'd like to read about their lives - the blog can be found here. And I'll post a link on this blog too.


I'd also mentioned in yesterday's blog that I would be going to the dentist today to check on my painful jaw. Not good news I'm afraid, it would appear that ECD has asserted itself there as well. But in need of a "yay", this household is glad that that I've kicked my recent grumpiness aside!

YAYs and BOOs

Just a quick post, I'm on way to the hospital. For once not for me, my doctor is being honoured tonight and we're invited guests (a photography project that I worked on for the hospital is being unveiled tonight). Yay Dr. H!

Yay again to Dr. H. - he managed to get me a three month trial supply of Kineret. A very persuasive man is he, we got the phone call late yesterday. Waiting now for a shipment to arrive from Sweden, and then I start my injections. That's worth at least a quintuple yay!

Boo to my hip. It's been causing me quite a bit of pain, and the results of an x-ray came in yesterday. Doesn't sound like good news, but I'll have a bone scan to confirm exactly what's happening there.

Boo to my jaw. I get so tired of bad news that I neglected to have it checked out when my teeth started not fitting together about six weeks ago. And then it became difficult to eat (which has certainly helped me dump some of this last steroid weight, so that's a yay). While I was on a heavy dose of prednisone for almost a year I was warned that bone problems can develop in the jaw and hip. Am I lucky enough to have gotten both?

Yay to my husband and daughter. I've been a major grump this week. They forgive all, I'm one lucky wife and mom.