Zebra's Child

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

Tag: Illness

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.

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
🐪🐪🐪🐪

Can’t Talk

I was out yesterday for 5 hours with a doctor’s appointment and then some errands, and…… well, the froggy voice that started the day before turned into full-fledged laryngitis, and I can’t talk. And I feel like…… well, like anyone feels when they have a cold. Which I supposed I should be thankful for. I feel just like anyone else feels when they have a cold. That is, so far no infection. 🙂 I was feeling extra exhausted all this week, and I was puzzled because although I had had my infusions last Thursday and Friday, I certainly should have felt better by Tuesday, for heaven’s sakes! Now I know my body was trying to fight off this cold, which it did successfully for several days. But now I definitely feel crappy. Let’s hope it doesn’t last long: I have an 8:00 AM performance call on Sunday morning. 😦

Sick Today

I’ve got a common cold, no need for alarm, but I’ve decided not to stress myself with self imposed deadlines. It’s supposed to rain rather hard over the next several days, which we desperately need here in California. Perfect weather for staying in, drinking hot tea, and wrapping up in a blanket in front of the fire. I’d suggest doing the same over the weekend, if you can manage, even if you’re not sick. Or at least an afternoon of it. Make it board game day in front of the fire with the kids, or snuggle in and watch a movie together. You will undoubtedly feel better for it. I’ll see you guys on Monday.    xoxo

 

Bronchitis

They decided today that the bronchitis is viral, which explains why it is not clearing up.  So, massive amounts of prednisone and inhalers every 4 hours. Sigh.  Not at all fun.  Shaky as a leaf.

Home and Fine

Home and fine.  The surgery went well and the doctor was pleased with the outcome.  But I’m still uncoordinated enough from the surgery and the medications that I keep hitting wrong keys. So I’m going to stop typing now and try again tomorrow.

xoxo Hannah

Surgery

Another long absence on my part.  My apologies.  The weekend before last I had dress rehearsal and then our Spring Concert.  Wonderful, wonderful.  More about it in another post.  Then I taught for 3 days the following week and was quite tired.  This week has been filled with 2 days of infusions, and tomorrow I have surgery.  It’s out patient, and is for my sinuses, but I don’t know how long it will be before I have the energy to post, other than to let you all know that I’m home and am fine.  Lots of good thoughts, please.  Many thanks in advance.

Hannah xoxo