Still here...

I apologize. There are so many of you who were following my journey with ECD on this blog and I let you down.

Half jokingly I said to a dear friend a few weeks ago that followers who aren't in direct contact with me might have believed that ECD had finished me off. You'll gather now of course that this isn't the case, and I'm sorry for leaving you wondering for so many months.

This will be a very short post to let you know I'm still here. For readers with whom I've been in contact with you know it's been quite a year. My illness continues to progress, I'm on another new experimental treatment (with yet another insurance battle - which ends with an amazing story that I'll share some other time). A little older, maybe a little wiser and still trying to get through this with a brave face and a sense of humour in a life that is very different from one short year ago.

To those who've been supporting me along this difficult journey, thank you. You know who are (and there are many of you), and you know how much your support has meant to me. I'm grateful beyond words.

Taking a break

It's been over six weeks since I've posted here, and I see from the daily stats that many of you are still checking in regularly despite my inactivity. And I thank you for your continued interest, concern and sweet notes of encouragement.

However it's time to take a break from writing "Without a Manual". There have been some significant changes in my life over the last months and I just don't have it in me to share with the world at large right now. I've been told that occasionally past posts have been helpful to others seeking info about the treatment of Erdheim Chester Disease, and for that reason I'll keep the blog up for now.

For those of you interested in how my meds are working out - I couldn't be happier with my Kineret treatment. Pain is infrequent, and when it does occur is much milder than it had been before starting treatment in December. There's been talk at a recent hospital appointment about a new IL-1 inhibitor type drug that is administered less frequently (these once a day shots are becoming more difficult as scar tissue builds in the allowed injection areas). It's reassuring to know that my medical team continues to investigate other treatment options.

The gluten free diet I embarked on has also been a very positive development. When I slip up and accidentally eat a gluten product my body lets me know pretty quickly that I've goofed. So the modified diet stays!

I thank you with all my heart for the amazing support I've received from so many of you since starting this blog two years ago.If you'd like to get in touch directly I can be reached at sessa1@live.ca.

With my gratitude,
Sandy

Going Gluten Free

My body has always given me challenges, and it seems as time goes on it complicates my life more and more. Allergies to all kinds of things have always been an issue, from the pollen allergies that have me sniffling and wheezing for months each spring and summer, to drug allergies that make treating illness somewhat difficult at times - and food allergies/sensitivities.


The latter are becoming more aggressive as the years go by. Lactose, soy, poultry, eggs are to be avoided (especially poultry, I have to carry an Epi-Pen because even the smallest amount will trigger an anaphylactic episode) and now wheat has been added to the list.



I realized that wheat products were problematic several years ago, but it wasn't until recently that I put two and two together to realize that eating wheat almost always triggered a cardiac episode for me (very irregular heartrate along with increased pericarditis pain, not to mention sheer exhaustion for a day or so). It was only because I'd gotten into the habit of making pasta every Saturday night and wondered how the heck my heart knew what day of the week it was!


After several weeks of an elimination/challenge diet we were certain. Wheat had to go. I wasn't in the habit of eating a lot of pasta or bread, but when I did I sure enjoyed it (foccacia with a bit of season olive oil, heaven!) How was I going to deal with this after eliminating so many other foods from my diet?


It's been MUCH easier than I though it would be. We never ate that many wheat products to begin with. Vegetables, fish and the occasional small portion of red meat to help with our iron levels were our staples (and I should mention my husband is on board 100% to eat the same diet, although I'm totally okay with him bringing items with gluten into the house).

Over the last two months we've introduced gluten free pasta and breads, more beans and a whole lotta brown rice to our diet. I love to cook and this experiment has given me inspiration to try new spices, techniques and other new ingredients along the way.


My heart is quieter these days, my stomach is rebelling less and I just feel better overall. The clincher has been just how many friends and acquaintances have mentioned that I look so much healthier (and in most cases they didn't know about my transition to a gluten-free diet). Looking better? Hey, I'll take that - thank you!

Sleep, Glorious Sleep!

I don't always listen to my doctor, and at tomorrow's hospital appointment I'm going to explain why.

A few posts ago I wrote about my inability to sleep. Night after night of just two or three hours, I was wearing thin after weeks of this pattern. Feeling the kind of exhaustion that you know just isn't good for you at all, I could feel myself losing whatever fragile grip I might have on my health. My appetite had gone wacky feeling hungry all the time, unable to make decisions because the brain fog was so thick, and my sense of humour was obviously going out the window as my husband's attempts at getting me to laugh fell flat (and he's pretty darned funny).

I would take sleeping pills for a few nights in a row, but unfortunately they did absolutely nothing (whereas half a dose would usually have me out cold within half an hour when I was having a bad bout of pain). I tried most nights without pills, finding myself ever so alert at 3 a.m, and the opposite at 3 p.m. the next day.

In a call to my doctor about ten days ago, he informed me that there was nothing else he could prescribe - and to just relax. Relaxing was not my problem, just NOT SLEEPING was my problem!

I felt that somehow I needed to break the pattern, and it was time to get creative. Everything that is normally suggested for insomnia just wasn't working. So.... I took a trip through my extensive collection of prescription meds and came across an antihistamine that was prescribed when I had my injection site reactions to Kineret. What had the doctor told me? Be careful with these Sandy, they'll knock you sideways with drowsiness! Hmmmm...... Do I see a rash coming on?

When I did have the site reactions I'd not taken the prescription med (do you see a trend here?), relying instead on topical lotions so I had no idea how I'd react to them.

Out in ten minutes. And I stayed asleep for six hours. Absolute heaven. Tried again the next night, eight uninterrupted hours. And then twelve hours, a bit too much sleep but I was feeling energized again, and certainly more clear headed. One more night of almost twelve hours and I felt that I'd broken that nasty cycle of insomnia. Plus I was staying "drugged up" well into the next day.

Time to try without anything to help me sleep, and I've had a fantastic last three nights. Eight hours, waking fully rested - and back to my regular afternoon nap as well to re-energize when I start to sag.

Never have I been so pleased to realize that I was out like a light for the whole night. Bliss! And no rash either. :-)

How I Spend My Afternoons

I just posted this on Facebook, but I thought I'd also share with all of you a brief story about how exciting my days are around here - despite being a bit grumpy about my lack of sleep (see previous post) we can still have a good laugh. :-)

Kinda proud of myself, saw a big ole spider (hate having them in the house, or worse on me!) waaaaay up high on the vaulted ceiling and wondered when he might be ready to take a trip down to visit us, but decided not to wait. Devised a catcher by putting the sticky side of duct tape facing outwards on the end of a broom handle and climbed up on a chair. Got the sucker, but when I went to show my husband (proud of me? catching huge* spideys!) he jumped off and scuttled towards my feet. So much for my fearlessness, my shriek was probably heard in Hamilton.

I really need to patent these brilliant (semi brilliant at least!) ideas... :-)

* I should add that my husband might have a differing definition for "huge" than I do when it comes to spiders. But just spiders. Well, maybe snakes too. I must have the "scary beast magnification option" installed in my vision software.

Dare I Dream? Not!

I was like most kids at bedtime, not wanted to go to sleep for fear that I might miss something exciting. And I was also an avid reader who hated to put a book down until I'd turned over the last page (it wasn't unusual to find me still awake far later than I should be with a flashlight and my newest novel under the sheets).

It's usually much later that we truly appreciate what a gift a good night of sleep can be. For most of my adulthood it was something I took for granted; my head hit the pillow and I was out for a good seven or eight hours. And aside from a pretty rough first six months with colic, my daughter also joined the the league of good sleepers (didn't we just make so many of the other parents envious!)

During the ten months I was on steroids my need for sleep diminished significantly, a very common side effect during prednisone treatment. But during that time, I didn't feel the need to catch up with naps - steroids put me into overdrive! I slept little, talked quickly, had thoughts swirling around at a miles a minute. My family were probably secretly begging for a pause switch to be installed!

As my dosages dropped over the months, my regular sleep pattern returned. And then some. It seemed like all I could do was sleep all night and nap most of the day. Getting absolutely nothing productive accomplished besides keeping the bed and couch warm.

And then something happened about five weeks ago that I'm at a loss to explain. Within a few days I went from sleeping excessive amounts to hardly sleeping at all. Hard to believe, but over the past few weeks I've slept on average about three hours a night, and up to five hours on the best night in the last month.

I'm not fretting, I'm not worrying, it's not stress that keeps me alert every night. Just a complete inability to drift off. It's actually a bit alarming just how chipper I am at 3 am. Even annoyingly so I'd venture.

My days however are long, feeling physically spent but unable to nap. Like there's a brilliant light shining into my eyes that I can't turn off or dim. Every single night it's the same routine, I lay awake until about 4 am, and wake up just a few short hours later to a day that drags on seemingly forever.

Why didn't I appreciate it more when a good night of sleep took no effort whatsoever? And why do my most alert hours have to happen when I can't use them to best advantage? I'd love to spend time with my family, catch up with friends, enjoy meals with loved ones (I'm as hungry as all get-out when I'm so awake!). No takers I'm afraid, I'm on my own.

Sleep, please find me again. I promise I'll appreciate you more this time around.

My Apple Tree and Other Broken Stuff

Almost two years ago I wrote a post about the apple tree that sits not far from my bedroom window. A tree that's special to me, it's also had its share of indignities cast upon it during the few years we've been living here.

I've been looking forward to the luscious aroma of apple blossoms that comes forth every April, telling me that spring is truly here. Time to throw the windows open and welcome the freshness indoors. Well, it ain't that kind of spring this year! It's snowed twice today. Nothing that sticks to the ground, but enough that we're all moaning that instead we should be getting out the short sleeved shirts and shorts - not hanging on to our parkas and turtlenecks!

It's also been very windy over the last week, gusts that make the house moan and creak. On on especially windy night earlier this week I heard a large crackle just as my husband was coming up the stairs to bed. I called out to make sure he was okay, but he'd not taken a tumble down the steps thankfully and I chalked the noise up to a garbage can blowing around outside.

The next morning as I was looking out at my apple tree as I always do, I was shocked to view what must have been the source of the noise the previous night. A couple of substantial limbs had been sheared off and lay close to the trunk.

Normally I'd just think this quite sad that such a beautiful tree had been damaged - but this is MY tree. The tree that I'd hoped would recover from previous damage, just as I had hoped at the time I wrote my earlier post that I would recover from the damage to my body. We were in this together!

The timing of this really hit me hard, it was just a day after we'd been to the hospital to review the results of tests and scans that I've undergone over the last few weeks. My illness is advancing. The bone lesions are spreading up my leg and into my hip, and my aorta now has involvement as well.

My tree and I are both not doing well. And in that same post of almost two years ago I wrote about having to postpone my dream trip to the Big Apple. And finally I must accept that it'll likely never happen. And sometimes when you can't have something it seems like it's all you can think about.

And as I finish up this post, it's snowing again. Not just snow, it's almost blizzard-ish. I think I'll just go back to bed and pull the sheets up over my head. 'Cause it's just that kind of a week.