Zebra's Child

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

Category: Living With CVID

Appearences Can Be Deceiving

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Image: ZebrasChild

Any guesses as to what this tree is? Or the fruit? No fair if you are a person who knows the name of every flower, bush and tree.

I was taking a picture of this while I was walking the dogs (which is when I take most of my photographs), and a woman walking by asked me if I knew the name of the tree. When I responded that I had no idea, she told me the name and said, “Since you were photographing the tree, I thought you might like to know the name.” She was right, of course, I did want to know the name, especially since I was going to put the photograph in a post.

Ready for the big reveal? It’s an Irish Strawberry tree! (Arbutus unedo, if you’re interested.) And apparently you can actually eat the fruit; you can even find recipes for it online. Who knew that a kind of strawberry grew on trees? And especially looking at this unripe fruit, I never would have guessed what it was in a million years.

Many disabilities or rare medical conditions are like that – you can’t necessarily tell from just looking at a person whether or not they are healthy. A person with a serious heart condition, for instance, might not appear to need additional help opening a heavy door. And in my case, having a Primary Immune Deficiency doesn’t always show, if I’m relatively healthy at the moment. People passing me on the street have no idea that I need IV infusions every three weeks to stay alive. When people do find out that I have CVID, I usually get the reaction, “But you look so healthy!” For a long time, I didn’t know what to say to that other than “Ummmm, well….. actually I’m not.” Which made me feel a little silly, because it didn’t feel like I was adding anything either to the conversation or to their understanding. And giving a scientific explanation of gamma globulin levels, B cells, T cells, number of known genetic mutations, etc, which I love to do, usually has the effect of making people’s eyes glaze over. I usually end up saying, “Well, when I’m not doing well, I don’t come out of the apartment, so you usually only see me when I am doing well.” Which people here in the building usually do understand because there are many people in their 80’s and 90’s living here. And their medical condition is, well, being old.

But life can be extra tricky to navigate when you have been diagnosed with one of the “invisible diseases.” It’s hard to explain why you can’t always come to social functions, or why you need naps during the day and many hours of sleep at night. And it can be awkward to find that you sometimes have to cancel commitments at the last minute.

People often don’t know what to say when you explain that you have a managed, but incurable and life threatening disease. For those of you wondering, the most helpful response is the same as when a friend is going through any other difficult time. A simple, “I’m so sorry that you are living with this. Is there anything I can do to help?” goes a long way toward making us feel seen. Above all, we need to feel like people rather than A Person With A Disease. We have interests, goals, passions for things just like a healthy person. And we are so grateful when you see us for who we are: people. People with special needs, yes. But people. Like you.

Pictures in Mud

One of my callings, or gifts, or weirdness, I don’t know which, is seeing beauty in the mundane. Or sometimes even seeing beauty in what other people would consider ugly. I was walking home from the grocery store today, and noticed that a tree was reflected in a mud puddle. I thought it was beautiful.

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Health As We Age

To say that a lot has happened in my life in the last two years would be an understatement. But today I would like to focus on something good: the fact that our moving back north and into a retirement community has improved my health significantly.

My husband and I had lived in a communal living situation before we were married. While no one had the full responsibility of the house, or meals, repairs, etc, we all needed to pitch in and help. But living in a retirement community, especially in the heart of the City of Oakland is very different. Essentially our monthly fee takes care of almost all of those chores. It has given me the wonderful freedom of time that I did not have while living  in our house. I no longer have to spend hours at the grocery store, as dinner, the most complex meal, is provided in our monthly fee. The few things I do need in drug stores, grocery stores, or hardware stores are only 2-5 miles and about 5-15 minutes away. And while I prefer to support local merchants, if I am ill and cannot get out of the apartment, I can always order things on line – something I find I am doing with more regularity now. Oh, and our medical care? We specifically chose a retirement community that is very close to our Kaiser: only 1 mile away!! Also, I am no longer responsible for repairs. While it still gives me great satisfaction to fix things so that they work again, the whole process of finding the replacement part you need, and then of course almost always discovering that the repair takes way more time than you thought it would, is exhausting. I’m willing to give up that “It actually works!” thrill in exchange for being able to pick up the phone and have the repairs done by the staff in the building. Each time I am able to do that, I realize that it has saved me several hours of hard work. And more importantly, saved me the extreme exhaustion that comes from that.

However, the biggest improvement in my health since the move back to the coast of Northern California has been getting out of the terrible smog and traffic congestion of Los Angeles. While the Bay Area does have some smog, it is quite mild compared to LA. And traffic congestion, while it certainly exists, is also not as bad. And the bottom line? I don’t need to get on the freeway during rush hour.  (Insert very very happy face here.)

Friends are even more important as we get older, in part because we no longer have the daily interactions with people at work. In fact, in older age, one of the predictors of poor health in general, and poor outcomes of medical events in particular, is isolation. My husband and I were lucky enough to have moved into a 23 story building with 250 residents. We are a community with a common dining room and many activities, so I have the pleasure of meeting many friends. Far more friends, in fact, than I think I have ever had at one time. And with so many residents in the building, it’s possible to find a few close friends right here. And perhaps the best part? One of our daughters, her husband, and our grandchildren live only 6 miles away, so I am able to be very much involved in their lives. The presence of people I know and love has been wonderful.

As my husband’s and my health steadily declined over the years that we were living in the house in Pasadena, we invited fewer and fewer people in. It happened slowly, and so we didn’t recognize how isolated we had become until we moved into this retirement community. After only a couple of months here we realized that not only did we have family close by, but that we were once again surrounded by friends and had interesting things to do, all without leaving the building if we didn’t feel well enough to go out.

And on a final note, I just have to say that the weather here in the East Bay always feels as if it was created in heaven. The moderate climate has been a huge help. It rarely gets as low as the 30’s at night, and it is very unusual for it to be as high as the upper 90’s in the summer.  The area in which we first lived in Southern California for 25 years could get up to 114 degrees in the summer. I’m not making that up. The extreme heat would often start in April and last until the end of October. (With the June Gloom giving a short respite.)  It was routine during those months for the temperature to be 102 – 106 degrees. But 110 – 114 was a special hell. When we moved to Pasadena, the summers were at least better, but still ranged from 96 – 102 degrees. I have never tolerated heat well, and after my immune system collapsed, the hot summers left me constantly feeling ill and unable to do much of anything.  In the Bay Area’s temperate climate, I am able to be much more active, which in itself improves both my health and energy. Adding to that I can tell you that we have practically no flying bugs. I’n not saying that flies won’t buzz around garbage, but we have so few flies and mosquitoes that in general we don’t even have screens on our windows. The wall in the living room that opens out to the balcony is made entirely of glass. (Tempered glass in a temperate climate.) When I open the sliding glass doors, and there is not even a protective screen, I feel that there is no separation between me and the outside. Living on the 10th floor and standing just inside those open doors, looking out over roof tops and towards the hills makes me feel almost suspended in space, and gives me the sense that I am one of the luckiest people alive.

I am deeply saddened that my husband didn’t have longer to enjoy our life here, but I am  profoundly grateful that we moved when we did. He thoroughly enjoyed the two and a half years he did have here, and I am healthier, have half of my family close by, and am surrounded by many people who truly care for me. I sometimes think about what my life would be like if my husband had died while we were still in our house, and I realize that it would have been so much harder. If I had been left on my own in the house, I wouldn’t have eaten adequately, I would have wandered around in an empty house with only the dog, I wouldn’t have had the health or the energy to meet up with friends, and I would have become extremely depressed even beyond mourning the death of my husband. I would have known that I couldn’t have continued to live in the house alone, but would have had such feelings of conflict about the process of leaving, that it would have felt overwhelming to sort it out. Neither my husband nor I were blessed with good health, and at first I was angry that we needed to give up our beautiful Craftsman home and move into a retirement community when we were so young. But I am so very grateful that we did.

 

 

 

Tidal Waves

My husband and I are in the midst of a multitude of changes in our lives. Not little changes like the new, clean bedroom carpet we installed to replace the 15 year old one that bore the brunt of many accidents our puppy had when she was new. No, I’m talking about huge, sea changes. The tidal waves. The ones that smash into to you and pull you under and leave you desperately struggling toward the surface, hoping that you can reach the air before you lose consciousness and your lungs fill with water. The events in life that you survive, but leave you forever changed.

Due to various medical conditions each of us has (in my case, CVID), each of us are exhibiting symptoms and illness that are more typical of someone 10-15 years older than we each are. Admittedly, our children are in their 30’s, and it’s true that we would no longer be considered young, but we’re not considered old either. We in fact know several people 15 – 20 years older than we are who are in far better health. Certainly each decade of aging after age 40 or so leaves your health and physical strength a little diminished. But it is especially hard when it catches you unaware because what is happening to your body shouldn’t be happening for at least another 10 years. The poor balance that causes falls. The eyesight that’s no longer clear. The job loss due to poor health, the surgery that didn’t go well, the occasional inability to make it to the market when you need food, the necessity of caring for an injured partner when you yourself are ill.

So many things that taken individually seem small in and of themselves, and indeed might be if they were happening to only one of you, but they are things that become insurmountable when when added together between you both. They start out happening here and there, but then one day you realize that some of the simplest tasks of daily living have consistently become amazingly difficult. You go on with the business of living as best you can, but there are empty spaces that used to be filled, and you realize that you didn’t fully notice the common things. The little things that bring glory to everyday and you don’t notice that they are there and a glorious until one day they’re not. Then you realize that you didn’t say goodbye properly, or whisper “thank you” often enough for the blessed ordinariness of each moment.

And then with one thing and another, and all those ordinary things that you that you took for granted but can no longer reliably do, you one day realize that you have to give up things that you deeply love and can’t image living without. You start by changing the little things, the things that won’t cause you huge amounts of grief. You give away a single large piece of furniture that was causing one of you to trip and fall, and you hope and pray that that will be enough. Enough to enable the two of you to go on with life in the new normal. Then you find that you have to make another change, and then another. And gradually you realize that none of these little changes are going to be enough, and you are going to have to change major portions of your life. You think you can’t possibly, but you do. You do because you have to. But it hurts. It hurts when both of you age before your time. All you want is your old life back, and things to be as they were. But there comes a time when you know that they never will be. And what do you do then? How do you navigate through a series of decisions that you know are going to cause you such pain in the process of letting go?

Difficult Times

No picture today, and I know I haven’t posted in a very long time. We have had one death and burial in the family and are headed toward another one. My mom entered hospice a week and a half ago and is now in her final days. She is elderly and is at peace with her decision, but that still doesn’t make this journey easy. Please keep us all in your thoughts.

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
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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)