Zebra's Child

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

Let Us Not Forget

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Les cierge votives dans L’église de la Madeleine, Paris, France     ©Zebra’s Child

I have more posts in my head about the Charleston mass shooting, but I am finding them difficult and painful to write. Many of my thoughts are tangled and sorting through those tangles is taking time.

But at the moment I want to call attention to the fact that we need to honor two sets of victims of the mass shooting at Emanuel African Methodist Episcopal Church in Charleston, South Carolina: those who were murdered and those who survived.

We are good at remembering the dead. That is in part because of the horror we feel when we think about how nine innocent people were gunned down in a place of worship simply because they were black. We are also good at remembering the dead because we think the dead no longer require anything of us. Few things could be farther from the truth, but that is the subject of another post.

We are not so good at remembering the living. We have seen pictures  of those who died, and have both read and heard their names many time. That makes it easier to think of them as individuals. Remembering the survivors of the mass shooting at Emanuel AME Church is more difficult. To begin with, most of us don’t even know, or can’t remember, how many survivors there were. I certainly didn’t. I had to look it up. According to the Wikipedia article, 4 other people were in the same room. Three were uninjured. The fourth was injured but survived. Unlike those who died, we have not seen these names listed multiple times, nor have we seen their pictures. This is as it should be. Their privacy should be both respected and honored. But it does make it harder for us to remember them as people. Harder to remember that they were each witnesses to something that no person should ever have to see or experience: the sight of friends and loved ones being gunned down at close range, and the horror of wondering if they were going to be the next to be killed. That is an experience they will have to live with for the rest of their lives. An experience that typically produces feelings of intense relief that their lives were spared, and also feelings of guilt that they are still alive and others are not.

We need to remember those four survivors, as well as Rev. Pinckney’s wife and daughter who were present in another room of the church during the shooting. It is harder to remember the survivors, but we must. We must continue to hold them in our thoughts and prayers because they have had unspeakable violence perpetrated against them as well. We need to continue to remember the living as well as the dead, and work harder than we have ever worked to reduce the racial hatred and violence that exists in our country. We need to learn to recognize ourselves in each other, no matter the color of our skin, so that terrorist acts against those who are different do not continue to repeat themselves. We need to do all of this not only to honor the dead, but to honor and remember the living.

Industrial Water #2

©Zebra's Child

                                           ©Zebra’s Child

Photo taken in Pasadena, California, 08/06/2015.

Eastern Building

Entrance          ©Zebra's Child

Entrance, Eastern Building               ©Zebra’s Child

Historic Art Deco, Eastern Columbia Building Entrance,  849 S. Broadway, Los Angeles, California.

Halos of Light

Halos of Light       ©

                      Halos of Light                            © Zebra’s Child

I was engaged in the mundane task of washing beans for soup, when I noticed that light and water had transformed the task.

Turtle Speed

Flowers by the Roadside

Flowers by the Roadside                  ©Zebra’s Child

My body’s progress toward healing and infusion recovery is slow but steady. It’s complicated by the fact that I’m still not sleeping well at night. Don’t know whether it’s the heat or just that I’m unsettled. At any rate, one of my solutions when I don’t feel well is to look for beauty. We had to go out for groceries this afternoon, and I saw these flowers along the way. Capturing them on film definitely lifted my spirits.

Ordinary Beauty

Flowers and Light

                                Flowers and Light          ©Zebra’s Child

I’m still doing not much other than sleeping, which is exactly what my body needs. I can’t always sleep when I most need to because my sleep cycle is one more part of my body that doesn’t always function quite the way it should. So I am extremely grateful that Wednesday/Thursday’s infusions have balanced that out a little and has enabled me to get some much needed rest. Such is the miracle of adequate gamma globulin levels that the bottom of my left foot is already completely healed, and my right foot is doing it’s best to heal as well. This right foot is a little trickier because every time I walk on it the split opens up again, so it’s going to take a little longer. But with the infusion of gamma globulin, I know it will indeed heal with time.

The weather is a little cooler today, which is a welcome relief. The sinking sun this time of day is shining through leaves and flowers, transforming their ordinary beauty into incandescent light. All will be well.

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.