Zebra's Child

Living With Common Variable Immune Deficiency and It's Autoimmune Friends

Category: Living With CVID

Transplanting

Transplanting Hope      ©Zebra's Child

                      Transplanting Hope                ©Zebra’s Child

Sometimes we have to transplant hope. To physically move it into the dark corners of our lives when we cannot see anything but destruction. Sometimes the destruction is within us: our medical disease, our prejudices, our failure to act to right a wrong. Sometimes it is out there in the world: discrimination, hatred, violence. But as human beings, we need to hope. If we don’t hope, we are immobilized by exhaustion and fear, and our necessary vision and creativity desert us. That’s when we need to remember that sometimes it takes effort to summon hope. It takes some digging, some watering, and then some care and attention in order to see it thrive. It’s easier when hope simply springs up unbidden and is there when you need it. But other times we have to go searching for it and then physically transplant it. It may at first look out of place amidst the destruction. But that is where it is most desperately needed.

Loss

After

After

It’s hard, loss. It just is. I’m still a little weepy from encountering the about-to-be-fifth-grade student in the produce section of the market on Monday. When I allow myself to think about it, tears start to form. I could just push the feelings down and ignore them, but I have learned that if I do that, it just makes things harder later. Strong feelings that are suppressed don’t just go away. They lurk in the darkness, gathering strength, so that when they do surface, it takes far more resources to deal with them than it would have originally. I spent my childhood having to bury emotional reactions, so I count myself fortunate that I now can allow myself to feel appropriate grief and mourn a loss.

But that doesn’t mean that it is easy. And I’ve learned that it doesn’t matter whether the rest of the world judges something to be a major or minor loss. Only the person experiencing it can know how much a given loss affects them.

For me the sight of this 10 year old did not just trigger the feelings of the loss of my fifth grade classroom after my immune system collapsed. It triggered the feelings of loss over my life as I knew it.  The loss of my independence to be able to go where I wanted to go and do what I wanted to do. The loss of being able to plan an outing and knowing that I had a 99% chance of actually following through on the plans. The loss of feeling that I was making a positive difference in the world each day, and the loss of the sense of pride that I was able to do a meaningful job and contribute to the financial health of the household.

After my immune system collapsed, I wasn’t sure of who I was any more because I couldn’t teach, or work in any capacity. For several years I couldn’t go to medical appointments or the grocery store without help. I couldn’t even depend on my body to do what it is hard wired to do: stay alive. Even catching a common cold could, and sometimes did, lead to an intractable infection that would take months to resolve, and even longer to fully recover from.

When that happened, I knew that the only thing I could do was to put one foot in front of the other, each hour, each day, each week. If I survived, great. If I didn’t…. well, it would be regrettable, but not unexpected. I was too sick to do, or accomplish anything. I couldn’t read the newspaper or a book. I couldn’t make any plans for the future beyond the next few minutes. I no longer knew my place in the world, and had no idea how I would put my life back together, or if that would even be possible.

This was my life after my immune system collapsed. There was a Before, and then there is an After. My health has improved markedly in the years since then, and I have slowly been inching toward a more normal life. I have now taken a wonderful trip to France, and many days I find that I can write, or I might have the energy to walk around with my camera around my neck taking photographs of beautiful things. But I never know. The past several days my body has just sort of shut down and I’ve had to clear everything off my schedule except medical appointments. I’ve had to rest a lot, and can not even be sure if I will have the energy for using the tickets my husband and I have for a play tonight. We can exchange them if necessary, but still….

There was a Before, and there is an After. And seeing the 10 year old in the produce section reminded my heart of the Before. I am deeply grateful that I so passionately loved the last years of my career, and it is good that I am able to cry over the loss. But that doesn’t mean that it is easy.

A Stab of Grief

Grief and Beauty

Grief and Beauty

Yesterday I was in the produce section of the market, and noticed a child helping her mother. She was reaching up, trying to grab ahold of a plastic produce bag from the dispenser, but she just wasn’t quite tall enough. Even on tip toes, she missed by about  2″. I smiled at both her and her mom, and commented that she needed to grow just a little more. They smiled back, and I could tell by the girl’s reaction and her height that she had just finished fourth grade and would be entering fifth grade in the fall. I felt a stab of grief. Her face so perfectly expressed the common energy of  10/11 year olds, and I realized again how much I miss a classroom full of those faces, eagerly looking at me, waiting to laugh at my jokes, learn new things, and to let their minds blossom into abstract thinking that is a whole new way for them of looking at the world. They are just beginning to see the interconnection of different ideas, facts, and applications. And when their faces light up with excitement over understanding something new, it is one of the best highs in the world. Fifth graders are the best students on the planet to teach, and I still miss it. If my collapsed immune system hadn’t forced my early retirement, I would still be teaching for a few more years. I haven’t yet hit normal retirement age. It’s not that my current life isn’t joyous. It is. And there are new experiences that are open to me now. But when you have lost something you love, through no choice of your own, it hurts. Over time, the loss gets less intense, but it is always there. Sometimes it rises up inside, surprising you with its intensity, and you find that you have some more grieving to do.

The View Through the Fence

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I’ve got to remember that the view through the fence is beautiful. But dagnabit! Some days I just hate the fence. The fact that the fence is there. That it interferes with the view. Some days the fence is just a fact of life and other days I think the fence is really ugly. Sometimes the fence has a gate I can pass through. Other days the gate is locked and I don’t have the key. And somedays I can’t even find the gate, and I can’t be sure that I will ever find it again.

The fence, of course, is my illness. This Common Variable Immune Deficiency that hems my life in, sometimes completely surrounding me with no way out. I will be hooked up to this IV machine for a day and a half every 3 weeks for the rest of my life, unless at some point a scientist figures out a way to perform gene therapy so that a surgeon can replace my defective gene. Which isn’t, in fact, science fiction. That therapy is on the horizon, but may not be actually fully developed and practical for decades. If ever. It all depends, as all things scientific do, on funding. That treatment would probably take the entire fence down, and I wold be able to live my life like a normal person. But in the decades of meantime…… there is this darn fence. And I really wish it wasn’t there.

I’m sitting here in the hospital hooked up to an IV, and will return at the crack of dawn tomorrow to be hooked up for the entire day. And then I will feel crappy for several days, and hopefully feel better along about Wednesday. I did super well in France, and even did well initially once I got back home, even though my infusion was 4 days late due to traveling. And then somehow, my immune system decided that it really didn’t want to work correctly, and I got a mild infection (which responded well to antibiotics, thank goodness), and I started not sleeping well, and………… Well, I just haven’t felt well for several days and I want to feel better.  I want to be able to do stuff. Like go to the grocery store, and take my dog for a long walk. With my camera. I want to be able to find a gate in the fence. One without a lock. One that i can push open and go back out into the world, and be able to see the view without looking through a chain link fence. Even though the view through the fence is beautiful.

Stark Beauty

Stark Beauty

Stark Beauty

We all have images inside our head of things that we find the most beautiful: our favorite flower, a painting that makes us catch our breath and stand mesmerized, a memory of a gorgeous sunset. When I think of an ideal garden, for instance, I think of the lush gardens I saw in front of country cottages in small villages in England many years ago. Of course the gardens got that way because it rains in England. A lot. Almost all the time, in fact. Or at least sometimes it seems that way. I’d love to reproduce just such a garden in my own backyard. But I have something of a problem: Southern California is in the midst of a severe drought. So if I am going to rip up the small patch of grass in my backyard for anything, it has to be for the purpose of replacing it with drought tolerant plants. Sigh. Drought tolerant plants do not fit my definition of “beautiful backyards.” At all. But as I have been walking around the neighborhood with my camera over the last month or so, I have begun to notice just how beautiful such plants can be. They don’t fit my preconceived notion of beauty. But there is nothing like a camera lens to help you focus on things that you might otherwise pass by. And pretty soon you realize that you are noticing the unusual texture of bark, or of a rock. Or that the light is hitting an ordinary leaf at just the right angle to make the leaf translucent. And you can never look at the world in quite the same way again, because you begin to see that everything is made up of small pieces of unique beauty. One day you look at a cactus growing in the midst of rocks and realize that it is starkly beautiful. Although I’m still not sure I want to plant it in my backyard.

Springtime in Paris 1

Le printemps dans le Jardin des Tuileries

Le printemps dans le Jardin des Tuileries

The second full day we were in Paris was a Sunday, and the sun obliged by shining bright and clear. The exhaustion of the travel and the time change had hit me full force, so that I was shaking slightly. But I really didn’t want to miss the beautiful day since weather in France in May can be iffy.

This was the first day that I fully realized how perfect the location of the hotel was. I was able to walk the 15 steps it took to reach the bottom of the street, then be able to cross the street, and be in the Tuileries.

Parisians had turned out in full force due to the beautiful weather on a Sunday, and I had to walk only a short way into the gardens before I was able to find an empty chair. I sat down, and proceeded to spend about 2 hours just watching people and taking pictures. Occasionally I would get up, wander a short way to get a different perspective, find another empty chair, and sit down again. I soaked up the sun, soaked up the beauty and soaked up Paris.

Un trés beaux jour!

Reluctantly Returned

After two glorious weeks, we left France, reluctantly, to return home. Neither of us were ready to leave, and felt that spending one more week would have been ideal, but had neither the funds nor the fortune to do so. I started coming down with a cold two days before we were due to leave, in large part because I had pushed myself too hard those last two days and was exhausted. It’s now settled into a mild infection, but I have started antibiotics, and will get my infusions tomorrow and Tuesday, so everything should sort itself out over the next several days.

My body still hasn’t adjusted to a clock that is 9 hours behind the time in France, which, I’m sure, isn’t helping my immune system’s effort to fight off this cold/infection. Nor is the 30 hours of no sleep that happens when you get on a plane in the afternoon in one time zone, fly for 11 hours, yet get off the plane just 2 hours later in the new time zone. But this, too, should resolve itself within a few more days. And I knew that I would have to spend the first week back resting.

I do have lots of pictures to share, though editing them will take a good bit of time. The glare on the screen of the camera was often so severe that I was essentially shooting blind, and thus sometimes took half a dozen or more pictures of the same thing, making small adjustments with each frame, hoping that at least one would come out well. I now have to go through and find the “keepers.” As I do that, I may sometimes simply post a picture with a caption or an explanation, saving my thoughts for another time.

In the meantime, I need to get my infusions, lots of rest, and hope that it doesn’t take my body too much longer to figure out day and night in this time zone of home.

There Are Those Mornings………

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When you feel like this. You wake up, you look rather distrustingly out at the world, and you think, “Really? You want me to actually get up and function in the world? You have got to be kidding me.” At least that’s how I felt Saturday morning, which was the morning after I had been hooked to an IV for 7½ hours, and 2 hours the day before that. An honestly, that’s kind of how I felt the next morning as well. My head still hurt from the IVIG headache, and my muscles and soft tissue still haven’t forgiven me for pumping all those medications through my body.

But I also know on mornings like this that if I don’t get up and start moving, I will feel worse. The infusions cause their own muscle pain but they also aggregate the fibromyalgia. And with fibro, the worst thing you can do is to be immobile. It’s true that for a few days after my infusions I can’t walk a mile, or do any sort of prolonged workout. (Well, prolonged for me, which to other people would probably be considered very short.) But I know that I have to get up, get my muscles moving, and do things.

I also know I need to be gentle with myself and not push myself too hard, which I have a tendency to do. Yesterday I wanted so much to walk the dog 0.75 of a mile, but knew I would probably regret it, so I settled for ½ a mile. I’m glad I did. 20 minutes after getting home I crashed, and had to lie down for half an hour. But I did feel better for having walked. And the dog definitely was happier. Great companions, dogs. They encourage you to do what you know you should.

Mornings that feel like this, I think of Judith Viorst’s wonderful children’s book Alexander and the Terrible, Horrible, No Good, Very Bad Dayin which everything seems to go wrong for the youngest of three brothers. Repeatedly throughout the book, when things don’t turn out the way he would wish, Alexander bemoans his fate by saying, “I think I’ll move to Australia.” Our 30-something older daughter can still recite it word for word. Alexandr’s phrase has become something of a short hand code within our family to signal that nothing seems to be going right. The book ends with Alexander’s mother tucking all three brothers in bed for the night and reassuring him that “Some days are [just] like that… even in Australia.”

But you needn’t to be a child to enjoy this book. It is worth pulling out anytime you have a morning like this. Or a day like this. It will get you smiling, and maybe even laughing. And laughter is good for the soul.

Because, of course, (to paraphrase):

~Some mornings are like this,…. even in Australia.

Consistency

Yesterday I felt pretty good. Today I feel pretty terrible. Such is the CVID life. I’m dizzy, tired, and have no energy. Perhaps it’s because I’ve pushed myself too hard these last few days, or because I didn’t sleep well, or because it’s hot, or because I ate/drank some foods that my digestive system didn’t agree with, perhaps it’s because….. well, you get it. Everyone with a severe chronic disease gets it.

One of the problems with a serious chronic condition is the seeming randomness of it from day to day. Sometimes we can track down a cause and effect (i.e., my sleep app confirmed what I already knew: I didn’t sleep well), but sometimes we have no idea. Or we can guess on some things, but have no idea what else might be playing into it. It is the seeming randomness that drives me crazy. I want to scream, “I had plans for today, dagnabbit!” But instead, I’m spending most of the day in bed, sleeping and resting, which obviously my body needs. Which is part of Taking Care of Ourselves.

But I have been writing a lot about fitness lately, and the question is, how do we keep up with a fitness routine on days like today?

The first thing is to realize that we can’t compare ourselves with healthy people. My staying in bed today isn’t laziness or giving up. Neither is it a case of staying in bed simply because that would be the easy thing to do. It is, in fact, what my body is demanding. I’m sure it has been hinting to me over the last few days that I needed to get more rest, but I ignored it, and so here I am, basically immobilized for the day.

So what to do about fitness on days like today? We do what we can. The important thing in exercise, or any discipline for that matter, is consistency. It is almost always better to do something rather than nothing. What have I done so far today? I spent at least 20 minutes stretching every which way under the covers before I got up. That practice is not only good for my overall health, it helps to counteract the increase in fibromyalgic pain that would occur from staying in bed most of the day. I also should be able to still take the dog for a short walk. And I hope to still be able to go to rehearsal. Singing will help me feel better.

Slow and Steady Wins the Race

I’ve been talking a lot about fitness, and how we can try to stay fit and healthy when the very nature of our disease means that we’re not healthy. We depend upon blood donors to stay alive and even the smallest, random infection can lay us low for days, or worse, put us in the hospital on IVs. But we have to work to stay as healthy as we can, or we are even more prone to succumbing to a viral or bacterial  illness. I’ve talked before about managing our limited energy, trying to stay tuned in to our bodies and not overdoing it, trying to be careful about how much we schedule in a day, and trying to rest when we need to rest, even when we really want to get just one more thing done, like a “normal” person.

But lately, I’ve talked more about how we can systematically build up our strength. One of my barriers to this is that if I’ve done a lot during the day, and am exhausted, I think, “Well, I don’t need to exercise today, right? I mean, I’ve done a  lot, and I’m exhausted!”

Here’s the thing I’m learning, though. Scurrying around, squirrel like, from one thing to another all day is not the same as exercise. Sure, we use muscles doing things like lifting grocery bags, taking care of laundry, etc, but it’s not the same as targeted exercise.

Using grocery bags as an example, carrying them inside is not the same as using barbell weights to strengthen our arms and shoulders, no matter how much we wish it was. In fact, using the weights on a regular basis enables us to carry in the groceries without getting as exhausted doing so, because we’ve built up those muscles in our shoulders and back. My small step philosophy: If you hate using weights, follow the advice one of my nurses gave me a few years ago, and use them while you are watching a show. (Or my favorite, while you are listening to music.) You won’t mind them nearly as much. And don’t start out with the heavy ones.

A couple of years after my first hospitalization post-diagnosis, I had lost so much muscle mass that my regular 2 lb weights felt like they weighed 20 lbs. That’s not an exaggeration. So I tracked down a sporting goods store that carried ½ lb weights (which by itself was a huge effort back then), went in (also a huge effort), and asked them where their weights were. The sales clerk took me over to the display, and I picked up the half pounders, one in each hand, and was pleased. The clerk, trying to be helpful, suggested that if I wanted something lighter than the 2 lb weights I had at home, that I go for the 1 pounders because the ½ pounders were so light it would be like lifting nothing. I told him that I was going to purchase both the ½ lb weights and the 1 lb weights, but that I needed to start with the ½ pounders because I had been extremely ill, and even the half pounders were going to be a challenge. He seemed to mean it when he said he was sorry that I had been so ill, and that he hoped the weights would help to build up my strength. (Note here: You often can only find ½ lb weights in the children’s exercise section. They were so small my hand barely fit in the bar between the ends.)

Several days later I started to use the half pound weights. I found I could do 5 repetitions of several exercises without completely wiping myself out. That was my goal: weights that I would be able to use that would make me tired, but not wipe me out. I worked at upping my repetitions and number of exercises, until I was ready to graduate to the 1 lb weights, and eventually get back to my 2 lb weights. I might eventually reach 3 lbs, but at the moment I’m happy with 2. When a routine gets easy, I add more repetitions and/or more exercises.

You don’t have to be a fitness nut to do this, and you don’t have to think of it as fun. I can assure you that my reaction is definitely not, “Oh goody, now I get to use my weights!” But I love what the process enables me to do: lift a box that needs to be moved and not have to wait for one of my adult kids to be around, carry in the heavy groceries without having to lie down for a half hour afterwards, or lift a toddler into a car seat.

And remember that building up endurance and strength takes awhile even for someone young and healthy, and I am neither. So all of this requires patience, something I don’t always have a lot of. But the rewards are worth it; I can work toward regaining little portions of my life, here and there. And that is something I used to think I would never be able to do.