Zebra's Child

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

Category: Health

Prickly Pear, Prickly Me

This is what my body feels like today:

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Prickly Pear or Tuna Cactus          Image: Zebras Child 2019

It seems like it’s been a long time since I’ve written about living with chronic health conditions. That’s not because they have magically disappeared, but because I am actually healthier up here in Northern California. (I’ve mentioned this before but…. cleaner air, virtually no extreme heat,  the ability to get more exercise, living in a community of people where I can both give and receive support, being 5 minutes from from medical care instead of 45 minutes – 2 hours away, having family nearby………)

But that doesn’t mean that the health conditions aren’t still there. They most definitely are. They just don’t flare as often.

And right now, well………    my fibromyalgia has definitely flared. I’ve been in increasing pain for several days and today my body just has been screaming at me. I don’t think I’ve used that description before, but it’s pretty accurate. My soft tissue aches and every nerve ending in my body feels like it’s on fire. Or that a malevolent force has been sending a high voltage of electricity through my entire nervous system.

So. I canceled my obligations, and have been taking some Tylenol. And using a heating pad.

But the first thing I did after breakfast may sound counter intuitive.

I took a two mile walk with my dog and a friend. (Someone else took our friend’s dog).

Yes, you read that correctly. I took a 2 mile walk.

Easy? No. Useful? Yes.

And beautiful. We walked part way around the lake, and then walked through the botanical gardens in the park. The flowers were in full bloom and were absolutely gorgeous. (Some pictures of that tomorrow.)

Please understand that a 2 mile walk is not a marathon for me. I usually walk less than that, but not by much. Typically, I and the dogs walk 1-1.5 miles, so I’m not suggesting that if you normally only walk 0.25 miles you all of a sudden boost it up to 2 miles. That would definitely not be good for you. But my dog has had several bouts with a sore infected paw lately, and she hasn’t been able to walk very far for the past few weeks. I figured that that was probably part of why I had a fibro flare – I hadn’t been getting my usual amount of exercise. Or my usual amount of sleep, for that matter.( She is now back to her healthy and happy self, I’m happy to report.)

 

After that I came home, ate lunch, lay down on a heating pad and had a good solid nap. I’m not completely better – fibro doesn’t work that way. But I’m not worse, either. And that’s at least something.

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.

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.