Zebra's Child

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

Category: Living With CVID

Post Infusions

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A huge thank you to all of you who supported me yesterday during my infusion with your wonderful thoughts and energy and prayers. I am exhausted and have slept a lot today, but my body has begun its healing process.

Much love to you all,
❤ Hannah
🐪🐪🐪🐪

PS: I did ask my nurses for “4 camels to go” as part of the medication order. They told me they were all out of camels at the moment. They were sorry, but they didn’t know when they would be getting a new supply.  In the meantime, they could offer me some juice. Seriously, they did. I told you they had a sense of humor. But judging by the look of this cranky guy, maybe I’m just as happy the camels were out of stock.  :0)

A Delayed Birthday Present

Birthday Coffee Mug        ©Zebra's Child

Birthday Coffee Mug: Miniature Schnauzer                     ©Zebra’s Child

A friend has the best blog title ever: “Four Camels and a Coffee to Go.” Since my nurses on the infusion unit have a sense of humor, I think I’ll ask them if I can have “4 camels to go” with my gammaglobulin infusion today. I’ll tell them it would be a delayed birthday present. They might tell me there’s only room for one, though. The infusion unit isn’t very large.

PS: I don’t have a picture of four camels. Or a picture of even one camel for that matter. So I had to put in a picture of a coffee cup with a dog on it. That’s the “coffee to go” part, obviously. The mug was a birthday present from my mom, by the way, so it fits right in. Hope you don’t mind.

PPS: As you may have read yesterday, my immune system is having something of a Work Stoppage and has decided to go out on strike for awhile. The bottom of my left foot looks something like the boils of Job, and the heel of my right foot has a fissure that is looking more and more like the Grand Canyon every day. I would very much appreciate any words of encouragement, good thoughts, prayers or even funny jokes that you might send my way throughout the day today. Many thanks.

Hannah
🐪🐪🐪🐪

Birthday Irises

Birthday Irises         ©Zebra's Child

                               Birthday Irises                        ©Zebra’s Child

I woke up this morning and discovered that the irises I bought yesterday had opened. Already the day had started out a little more hopefully than yesterday. I’m here on the infusion unit, my head still hurts like crazy, and my immune system still isn’t happy, but I get to go home to beautiful irises.

Looking Hard for Hope

Fallen Tree Leaf and Blossom    ©Zebra's Child

Fallen Tree Leaf and Blossom           ©Zebra’s Child

I’ve talked recently about sometimes having to transplant hope into dark places. But what happens when you look around and can’t find anything to transplant?

I’ve had a request from a reader to talk about what a day might look like for someone with a PID (primary immune deficiency). The idea here is to show how difficult it can be to live within a body that fundamentally doesn’t work the way it should, so that others struggling with CVID, or any other immune deficiency, will not think they are the only person in the world with difficult days. Knowing that you are not the only one out there can be profoundly healing.

So. Here’s a synopsis, with some background. Knowing that I would be 4 days late in getting my infusion upon returning from France, my doctor and I decided that the infusion I received before I left would be 120% of the dosage that I normally received. So far so good. I did wonderfully while I was in France with no infections or other signs that my immune system had to work extra hard. (That is, above and beyond the extra work it has to do on a daily basis.) I got my regular dosage of of gamma globulin upon my return, and all seemed to be well for about 4 days. I then came down with an infection, which is highly unusual right after an infusion. First signal that something was wrong. Since then, my immune system seems to have gotten further and further behind.

This Thursday will be the fourth infusion since I have returned from France. During the 3 weeks since my most recent infusion, my immune system has gotten less and less happy. Suffice it to say that for the last 3 weeks I’ve had all kinds of skin problems that haven’t been this bad in a year. I won’t subject you to the gory details.

Now on to today. Didn’t sleep well last night. Never do when my immune system is struggling this hard. I consider it to be one of fate’s cruel jokes, and will have a word about this with God when I die. Woke up about 8:00 and couldn’t get up. Went back to sleep. Woke up at 9:00 and still couldn’t get up. Repeat. Woke up at 10:00, let the dog out of her crate so my husband could feed her breakfast and decided that standing up was literally too difficult for my body to handle right then, so lay back down. Had an interesting conversation with my body about how I would really, really appreciate it if it would work a little better for me today because it was (is) my birthday and I felt so crappy that I hadn’t even remembered it was my birthday until my husband said “Happy Birthday” when I woke up. My body and I went back and forth with this conversation until 11:00, at which point my 88 year old mom called me on face time to wish me happy birthday. Her first face time call ever. She saw that I was still in bed and was white as a sheet, so this was her first sentence all at once, “Happy birthday dear oooohhhhhhhh you’re not doing well.” “No mom, I’m not, unfortunately.” We talked briefly and then hung up. I was hungry by then and so that necessitated that I get up to fix and eat breakfast. Then had a lovely phone conversation with a friend who also called to wish me happy birthday, but had to cut it short because I needed to move from the sitting up position to the laying down position again. Got up after awhile, took a shower and ate some lunch. Then went to my therapy appointment where I proceeded to cry while I talked about the fact that I have this darned immune deficiency, the skin on my feet won’t even stay together like it does on any semi normal person, and I really, really don’t feel well. I rarely allow myself to do that, but today it just felt overwhelming. I’m glad I did, though, because it actually made me feel better than I had all day. So I stopped by Trader Joe’s for some lettuce and bought some irises as well because I love irises. I came home, turned on the sprinklers briefly, put the irises in a vase, and then sat down to write this post, hoping writing this would make me feel better still. The jury is still out on that. Tried to make this paragraph somewhat humorous because humor is one of my coping strategies, and because I didn’t want this post to be so depressing that no one would read it. The jury is still out on that as well.

My therapist suggested that I postpone my birthday until the weekend. I think that is a really good idea, especially since we have theater tickets for Saturday night. Hopefully I’ll feel well enough to use them.

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!