Zebra's Child

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

Tag: CVID (Common Variable Immune Deficiency)

Snarls

Snarls © Zebra's Child

Snarls                   © Zebra’s Child

Hi Guys,

I know I haven’t been posting at all regularly, but I still can’t seem to get my pain levels consistently under control. I’ll have a few good-ish days and then, wham! The pain levels go up again. I can function and do what I need to do, which is what keeps me from going into the ER. I reserve that trip for times I truly can’t function. But the pain leaves me with little energy or interest in doing anything extra. I usually love to write, but there seems to be a lot going on that requires planning and decisions, added to tons of medical appointments. We’ve been back from the wonderful visit with one of our daughters, son-in-law, small grandson and very new granddaughter for 11 days, and for the first 8 days I commuted back and forth to Kaiser for five of those days. I say commuted because I have to allow at least an hour of commute time each way.  Sometimes the one way trip takes 30 minutes. Sometimes it takes 2 hours. What can I say? It’s LA. The trip all depends on the time of day, whether there’s been an accident, or there’s road work going on with a lane closed, or sometimes, I don’t know……….. the traffic simply seems to bunch up and then mysteriously clear. The physicists have a name for this phenomenon. I just call it unpleasantness. Luckily, for most of my appointments I need a driver, so I at least have a friend to talk to along the way.

The picture of the tree above looks a lot like part of me feels: caught in a seemingly endless snarl of traffic that is likely to be pretty similar today, tomorrow and the next day as I trace my way back and forth and back and forth to doctor’s appointments and hospital procedures. It also looks like the snarl of pain in my head that makes it difficult to see the green grass and pretty berries among the twisted tree roots. The roots are, after all, just trying to get a hold of a patch of earth that will support and nourish the tree as it tries to grow and even flourish, caught as it is between a sidewalk and a road, without enough real room to spread out. Add to that the fact that it’s watered only on the surface by timed sprinklers, rather than fed long, nourishing drinks of water that would encourage the roots to grow down, rather than sideways. It is doing the best it can, the tree. As are we all.

Infusion After Effects

©Zebra's Child

                                                                                    ©Zebra’s Child

This is a picture of my head at the moment. Flourishing, unfortunately.

Ah, the blessing and curse of gamma globulin infusions. I haven’t been posting as often because I’ve had high pain levels for the last two weeks. Please bear in mind that my body is in pain every hour of every day, and it’s just something I live with. Sort of like living with the tasks of changing diapers or cleaning bathrooms, only worse. It’s been that way for about 30 years. But curling up in a ball and not doing anything on a daily basis is just not an option for me, so I do my best to just get on with the business of living as best I can.

Until I can’t. Which happens sometimes. Sometimes it’s because I’m ill or exhausted or my body isn’t working correctly.  But sometimes it’s because the pain has gotten to the point where I can’t concentrate enough to read or hold a coherent conversation, or even follow the clues in a TV crime drama. Now that’s really sad! Clues laid out so I can figure out who did it, and my brain doesn’t work? Ouch. I love figuring out who did it. (Yes, I am a fan of murder mysteries.)

That was the level of pain after my last infusion. For those of you who have a PID, I know you are familiar with the problem. Gamma Globulin literally keeps us alive, just as much as dialysis keeps a kidney patient alive. But the treatment for many of us comes with some pretty severe side effects. I am given some hard hitting pre-meds before and during my full day IVIG, and I also have a half day infusion the day before specifically to help with the out-of-control headache that the IVIG causes. But sometimes all those pre-meds don’t measure up to the hard hitting torture vice that can take over my head afterwards. My infusion two weeks ago was one of those times.

So. I am better, but but still seem to have been left alone in the dungeon with the inquisitor. He just seems to have dialed the strength down one notch. Or maybe not. At any rate, maybe tomorrow will be better. I hope so.

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)

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.

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.

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.

Awareness 2015

Hi there. I’m a little late to the party, because, well, Easter was really early this year, and I’ve been trying to hibernate since then in a vain attempt to catch up on my sleep and recover from the exhaustion that Holy Week always brings.

But I need to announce that April is CVID Awareness Month!!!! Or, more broadly, PID (Primary Immune Deficiency) Month. It’s the month to tell everyone you know about CVID and, if you are comfortable in doing so, sharing your particular story.

Since CVID is a rare disease (1:50,000), most doctors, let alone average people on the street, don’t know about it. Which means that they don’t know how to recognize the possible symptoms, and thus don’t think to refer patients to an immunologist for testing and diagnosis.

All of which means that many of us die before anyone has figured out what is wrong, and for those of us lucky enough to be diagnosed, our diagnosis is often so far into the disease that we start treatment much, much sicker than we need to be.

So. Spread the word. Educate as many people as you can. Even if you don’t have a CVID diagnosis, you can be good will ambassadors and information bearers to everyone you know. Knowledge really is power, and we need as much power as we can get!

Here are some websites you might find helpful and informative. If you aren’t already familiar with the Immune Deficiency Foundation, their site is the fundamental site for information on Primary Immune Deficiencies, treatments, information, locating a physician, support, conferences, the works.

http://primaryimmune.org

Another site that has information, resources and links is http://www.cvidawareness.org.  It also has a Zebra Strong Store with links to buy things like T-shirts and mobile phone cases that help spread the word about CVID. This year I’m going to finally order a T-shirt and wear it to help raise awareness. I’m hoping to at least get a few questions along the line of, “So……. what’s CVID?” And then we can go from there.

Fighting and Acceptance

Let me make clear that when I use the word “fighting,” I do not mean fighting against the acceptance of our disease. That mind-set is counterproductive because it uses energy that we desperately need to use to take care of our bodies and our spirits. As hard as it is, we eventually need to come to a place where we can accept our disease. It takes us time. Sometimes a long time. But only then can we begin to find out what combination of treatments/medications/diet/exercise/life-changes work for us and nurture our bodies, rather than placing additional stress upon them.

Rather, when I use the word “fighting,” I mean all the things we work to do to give our bodies every advantage. When we feel ourselves coming down with a cold, we often say something like, “I’m so tired. I feel like I might be coming down with something. I think I’ll go to bed early to give my body a chance to fight it off.”

“Fight it off” indeed. Our body has to go into overdrive to fight against the invading virus. In fact for those of us with a Primary Immune Deficiency, that’s what’s wrong: our bodies are no longer able to fight off invading pathogens.

So we need to have some fight deep within us that we can draw upon. Some hutzpah, some audacity. That doesn’t mean we don’t accept our condition. Acceptance is absolutely necessary, as is some degree of surrender: a realization that we can no longer just override the needs of our bodies and spirits, and just keep going at full speed. We need to surrender to the new needs of our body; accept them, work with them.

But that is hard. Really, really hard. We want to fight against it. Deny it. Rail against it. Because at some level we feel that our bodies have betrayed us. And all of those feelings have their place. But only once we surrender and accept our new reality can we move on to the true fight. The fight that I call Grit and Grace. The fight to do everything we can to help our bodies. The fight to still live with infinite passion despite the pain and the exhaustion and the fear. The labor to accept who we now are, and the work of discernment to find our new place in the world. For we still do have a place.

A place in this swirling universe that can enfold us in love and challenge and joy if we will only let it.