Living With Common Variable Immune Deficiency and It's Autoimmune Friends
HI. My name is Ralf. I’m a frog. Obviously. Just in case you hadn’t noticed, and all that. Thought I should introduce myself before I told you guys to have a Grrrrrrreat Weekend. If you find any flies out and about, just pass them on to me, please. Thanks. Very much appreciated.
Hi guys,
Please pardon the dust while I experiment with different layouts for Zebra’s Child. I have begun to get back into a former hobby of mine – photography. While we were in France, I carried my camera everywhere, and I began to realize how much I both enjoy the process of taking pictures, and miss it. I’m more than a little rusty – it hasn’t been an avocation of mine in, ahem…. several decades. Busy raising children, pursuing a career, and all that. But I have been drawn back into the thrill of trying to capture that illusive shot in just a certain way. I’m no where near being a professional, and, as I say, I am certainly rusty. But I am wanting a format for the blog that will showcase my photos, as well as the written content.
To that end, I am going to try removing the header image of the three zebras at the water hole. I love the image, but my thinking process is that the cool zebra image is what grabs people’s attention, and I want to shift the focus to my photos and the written content.
So I’m going to experiment. Being a person with an anxiety disorder, I am someone for whom change is difficult. It is an understatement to say that change raises my anxiety level several notches. I have already spent hours experimenting with the layouts of different themes, and by midnight last night I was thinking that making a change was crazy, and I just should stick to the layout that I have. That would be the nice, safe option.
But when I woke up this morning, I was back to the fact that the zebra header is so prominent that it dwarfs any photos that I put up. And I want to highlight the photos.
So. Here it goes. I’m trying to embrace change. I know that is how we grow. (I will keep repeating that mantra to myself.)
And I tell myself that I can always return to the familiar layout, comfortably nestled in the Chateau theme, if I’m not happy with the new layout(s). I do, after all, really like the picture of the zebras. Give yourselves a few days to get used to a new format, and then please, please let me know what you think. I would very much like your suggestions and comments!
It had taken me three days on the internet here in California to find the “perfect” little hotel in Paris. My definition of perfect is different now than it was when my husband and I were younger and healthier. Then I would have put “romantic atmosphere” toward the top of the list. I say toward the top because it would have come right after “affordable” and “family friendly.” Unfortunately in those days, we rarely made it past the category of “affordable,” so our options were limited.
And while I wanted “romantic atmosphere” to be present for this trip, there were other necessities higher on the list. I was looking for a hotel that:
Given that we wanted to be right by the Louvre, the Tuilerie gardens, and the Musee d’Orsay (the museum that houses the impressionist art), that was an extremely tall order. At least if I wanted it to be affordable. I had plenty of options if I was willing to pay €500 – 1,000 a night. But I was looking in the €200 – 300 a night range. The closer to 200, the better. (I’d already tried the €100 – 200 range and that didn’t exist with list of things I was looking for.)
The third day I was on the internet, I finally found an affordable hotel that had every single one of the things I was looking for, including the location. When we saw the pictures on line, we could see that it was tucked into a tiny side street, but you could still lean out the window and see part of the Louvre, and the Tuileries. And when we arrived, we discovered it was just as great as it appeared on line. We found that it had enough amenities to keep us more than comfortable, a fantastic welcoming staff who were happy to help me along with my halting French, and a delicious breakfast. And it even had a romantic atmosphere.
After sitting with Zebra and all of the name suggestions for several weeks, I’ve chosen two: Zoe and Zanzibar. Some days Zebra seems to be a girl and other days Zebra seems to be a boy. So crazy as it sounds, I alternate the names back and forth. And some days when I’m feeling a little sillier I call Zebra Zoe-Zanzibar. Or Zanzibar-Zoe. Depending. Today she’s Zoe. She sends her best, and thanks all of you for being willing to give her a name. Or names. Depending.
Thank you one and all for the name suggestions for zebra! There are so many good names I will have to sit with them for awhile and see which one fits the best. I will definitely let you all know.
I am a zebra. Not a horse, although for years my doctors thought I was. Nope. I’m a zebra. You know what doctors are told in med school; “When you hear hoof beats, think horses, not zebras.” In other words, if something is wrong, don’t think of all the unusual things it might be. It almost always is the obvious one. Well, let me tell you, a zebra’s whuffle is not at all like a horse’s neigh. But a lot of times doctors think it is. For those of us with rare forms of immune deficiency, our doctors slowly learn that with us, they do need to think “zebras.”
Disclosure: I am a perfectionist. I am also, not surprisingly, moderately OCD and have an anxiety disorder. That means I try to control lots of aspects of my life and environment in order to lower my anxiety. Oh, and the little matter of my immune deficiency? That means that there is a huge aspect of my life over which I have very little control. Which drives me crazy. And which is why I sometimes feel not only like a zebra, but a zebra’s child as well; there are times when, just like a child, I have so little control over what happens to me.
Further disclosure: My biggest coping strategy is denial. I’m not kidding. Not watching movies, or reading books or eating chocolate, although those do all have their place in my bag of tricks. But I truly think that if I just ignore a problem, and keep living my life the way I’ve been living it, the problem will go away. Thinking that way is not a little problem, it’s a big problem if you have a Primary Immune Deficiency. Living the way I used to live, with all the activities, working too long and too hard, not enough sleep, etc. only makes me more and more seriously ill. And, unfortunately, my health won’t improve unless I think about it and deal with it, which is the last thing I want to do. Dealing with it is admitting that there is a problem.
So. I have Common Variable Immune Deficiency (CVID), which affects only 1 in 25,000 – 50,000 people, and is life threatening. The gamma globulin treatments that keep me alive involve my getting hooked up to an IV for a day and a half once every three weeks. (I don’t have to spend the night, I just go back the next day.) Now, ask me how I can regularly get those treatments and still be in denial? A day and a half every three weeks????? Well…… ummmm….. That’s a really good question. All I can say is that you have no idea how truly great my powers of denial are. I could probably enter a competition titled something like “How far has denial carried you in your life?” and have a good chance of winning. Or at least making it to the finals.
Unfortunately, as those of you with an immune deficiency know, denial can only carry you so far before you crash and burn. In my case, somewhat spectacularly.
Zebra's Child 