New Friends

Bad things happen. And not that we want bad things to happen to others but there is some comfort to be found in knowing that you're not the only person facing a particular challenge.

Finding the Erdheim Chester Global Alliance has allowed me to connect with other ECD patients around the world, and for this I've been grateful. And I'm so very thankful for the efforts of the Alliance volunteers who maintain the website , raise funds for further studies, provide us with a forum to communicate and much more. Especially the "much more" part - a special thanks to Kathy who is always there to listen and offer suggestions as we navigate the maze of dealing with a rare illness.

Here comes what could be a very long story, but I'll keep this short. In the last week I've connected with two ECD families, one about a five hour drive away and one about a ten minute drive away. The first diagnosed in the last couple of months, the latter in the last two weeks.

I was floored. Here are two families that face the same Ontario health system, in some cases the same hospitals (however not the same doctors, but we'll be working on making some connections between our medical teams!)

Of course I wouldn't wish this illness on anyone, but there was elation in finding nearby "teammates" in this challenge. Last weekend I even met the wife of the patient who lives very close by and we hope to get our families together soon (and the one further away promises to be in this area later this year).

I'm excited about connecting with these two families, and we've committed to working together towards getting drug funding (we're all facing the challenge of getting help paying for Kineret) and other issues that might be unique to furthering the cause for ECD for patients in Canada.

On the subject of Kineret, I'm well used to the shots now. A nurse from Biovitrum (the maker of Kineret) called this week to check on me and gave me some very useful suggestions for making the injections a little less painful.

Here's the dirt.
After six weeks of treatment my joint pain has greatly diminished to the point that I'm walking quite normally again.
Bone pain is still there, but less frequent. When it does come it seems sharper, but I'm concentrating on the "less frequent" part!
The cardiac pain has still been a bit of a challenge. Today is the first day in about two weeks where I've not felt it (I hope I haven't jinxed myself, still about six hours to go!) The pericardial rub is still going strong, although my doctors feel that it's less widespread across the heart and concentrated more in one area.

Still very optimistic about this trial!

Too Stubborn For My Own Good

In my last post, I was boasting about how I had shoveled the driveway twice over the weekend when we got a good dumping of snow. I tell you, sometimes I really ought to be more careful - I'm often pushing my limits a bit more than I ought to. Despite my husband asking me to take it easy and offering to do these more vigorous chores instead - there I go and try and do it myself.

After having a great week I think I undid my progress; I ended up in bed for a few days trying not to get my heart too agitated - it really let me know that I had overdone it.

Lesson learned. For now. :-)

Next obstacle was my flu shot. Yes, I should have gotten it a couple of months ago but there never seemed to be a clinic date that worked. At an appointment with our new GP a couple of days ago (we had to find a new local doctor, it's a long and boring story) Dr. M suggested that we get our shots, especially given that Kineret plays havoc with the immune system. She had the vaccine on hand and my daughter and I got our shots at long last.

Another setback. I've gotten my flu shot annually since my daughter was born (I'd been a single mom much of that time and wouldn't have been much use to her if I'd been sick) and never had more of a reaction that a bit of soreness in the arm and a slight fever the next day. This time was quite different (and I can't blame the Kineret, my daughter had a similar reaction and wasn't able to go to school yesterday because of it) - this time we both were lightheaded (to the point of having difficulty standing), nauseated, and generally feeling pretty icky. We're both starting to feel better today, and appreciate this is still much better than having the flu for a week or more.

So after a difficult week, I say the same thing that I say to my husband at the end of every challenging day.
Tomorrow will be better.

Going Strong!

What an amazing week.

A few days ago I had my first check-up with my doctor since starting Kineret (I should say doctors, there was a quite a parade of them coming in to see how I was doing!)

Although my pericarditis can still be heard through the stethoscope, it was generally agreed that it has become quieter. One cardiologist who's listened several times was sure that it was even undetectable every few heartbeats.

Less bone pain every day. I've even had some completely pain-free days, and I've dropped my pain meds by half - and intend to drop down further over the next week.

The rashes are tolerable, and I've stopped my oral antihistamines. I was given a stronger topical ointment and that seems to be enough.

I can't tell you just how much better I'm feeling as each day goes on. The odd day I've had a setback; it seems that increased sodium intake really doesn't agree with me especially since I've been on Kineret. It throws my heart into an arrhythmia for about twenty four hours but that's fairly easily avoided (but I really had to have that steak wrap last week when we went out for lunch with friends, it's been so long since we'd been out and I'd been craving one since I last visited that restaurant over two years ago!)

This is all great stuff but the real measure of how well I'm doing is what activities I can do now that weren't possible before. Let me sum it up. I shovelled the driveway. Twice this week. And this morning was a pretty heavy snowfall! And not one single twinge from my heart. This may not seem like a huge deal, but for someone who most days had quite a bit of trouble getting up two flights of stairs at once this is of enormous relevance.

Although my doctor is very cautiously optimistic about what Kineret will do, I can't help but be pretty darned excited about how I'm feeling. And I'm feeling hope.