Zebra's Child

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

Tag: Necesary Humor

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
🐪🐪🐪🐪

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.

There Are Those Mornings………

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When you feel like this. You wake up, you look rather distrustingly out at the world, and you think, “Really? You want me to actually get up and function in the world? You have got to be kidding me.” At least that’s how I felt Saturday morning, which was the morning after I had been hooked to an IV for 7½ hours, and 2 hours the day before that. An honestly, that’s kind of how I felt the next morning as well. My head still hurt from the IVIG headache, and my muscles and soft tissue still haven’t forgiven me for pumping all those medications through my body.

But I also know on mornings like this that if I don’t get up and start moving, I will feel worse. The infusions cause their own muscle pain but they also aggregate the fibromyalgia. And with fibro, the worst thing you can do is to be immobile. It’s true that for a few days after my infusions I can’t walk a mile, or do any sort of prolonged workout. (Well, prolonged for me, which to other people would probably be considered very short.) But I know that I have to get up, get my muscles moving, and do things.

I also know I need to be gentle with myself and not push myself too hard, which I have a tendency to do. Yesterday I wanted so much to walk the dog 0.75 of a mile, but knew I would probably regret it, so I settled for ½ a mile. I’m glad I did. 20 minutes after getting home I crashed, and had to lie down for half an hour. But I did feel better for having walked. And the dog definitely was happier. Great companions, dogs. They encourage you to do what you know you should.

Mornings that feel like this, I think of Judith Viorst’s wonderful children’s book Alexander and the Terrible, Horrible, No Good, Very Bad Dayin which everything seems to go wrong for the youngest of three brothers. Repeatedly throughout the book, when things don’t turn out the way he would wish, Alexander bemoans his fate by saying, “I think I’ll move to Australia.” Our 30-something older daughter can still recite it word for word. Alexandr’s phrase has become something of a short hand code within our family to signal that nothing seems to be going right. The book ends with Alexander’s mother tucking all three brothers in bed for the night and reassuring him that “Some days are [just] like that… even in Australia.”

But you needn’t to be a child to enjoy this book. It is worth pulling out anytime you have a morning like this. Or a day like this. It will get you smiling, and maybe even laughing. And laughter is good for the soul.

Because, of course, (to paraphrase):

~Some mornings are like this,…. even in Australia.

Machine Girl

Machines. I like machines. They do things for you. Take a good circular saw, for instance. Or a chop saw. Or a table saw…. They cut your work by about 99%. Or a good drill. Mmerrrrrrrrr. That is a sweet, sweet sound. I asked for a drill for my birthday present about 36 years ago. It is a middle-of-the-line Sears Craftsman, which is what my father-in-law always said was the best value for the money. He was right. That drill still works as well as it did when it was new, although I can’t use it as much now. When I showed it to him after I had received it, his reaction was, “Man! You could put up siding with this. It has enough insulation around the motor to be able to use it all day.” That pleased me enormously. I didn’t have any intention of putting up siding, as my small frame couldn’t lift wooden panels that large. But I did use it for repairing things around the house. Or very occasionally, building things.

Or think about cars. You only have to feed them petrol and oil occasionally. No oats required. And the occasional repairs and maintenance are less than the vet bills for a horse, I can assure you. You might argue that the older the car gets, the more maintenance and repairs are needed. But the same thing can be said about horses. The older Old Bess gets, the more she needs to see the vet. (And you think the vet is expensive for your dog?) Your mechanical horse doesn’t need to be curried, exercised, or sheltered. I mean, it’s nice to shelter your car in a garage, but it’s not necessary.  And let me just say that you don’t have to shovel out the muck from your car’s stall. No. Muck. That’s a plus right there. Admittedly, the car doesn’t muzzle you affectionately, and you can’t feel it’s warm, sweet breath on your neck on a cold day. But, come on guys, you just need to buck up. You have to sacrifice some things after all. And if you absolutely insist on warmth, there now are cars with heated seats. Another great invention, since they keep you far warmer than the car robe that I had to drape over my lap during a couple of New York winters just to keep from freezing my bazooties of in the back seat of my grandparents’ car.

All this, of course, is not even mentioning such modern inventions as vacuum cleaners, dishwashers, and the like. My grandmother (the same one who always had afternoon tea waiting for me), had an electric wringer washing machine that we had to connect to the sink once a week, and then hang the laundry out in the yard or in the cellar. I swear to God it looked like this, only our wringer was electric.

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And no, it’s not because I’m that old. Until the two years my mom and I lived with her parents, I had only seen washing machines like that in pictures. It’s because my grandparents lived out in farming country in New York where everybody had their own well, and we were in the middle of a drought. I was told at the time that the wringer machine used less water than a modern washing machine, and it was thus a necessity, but I also suspect that the State Historical House we lived in, built in 1804 and proudly displaying a New York Sate Historical Landmark sign out in front, didn’t have the necessary electrical wiring for a more modern machine.

I write all this because, well, I sometimes have to remind myself that I am more than my CVID deficiency. And I truly do like machines. I miss being able to do all the repairs around the house. When our younger daughter and her family visit and they do major repairs for me, such as insulating the garage, I will go out and stand there, just smelling the sawdust. It has such a clean, productive smell. Hanging around in the garage is bittersweet, because it makes me realize just  how much I miss being able to do such things. I didn’t always enjoy the actual process; sometimes it was really frustrating when things didn’t go the way they were supposed to. But when I was done, I would have such a feeling of accomplishment. There’s just something so satisfying about looking at something that you have fixed or built with your hands (and machines!), and knowing that now it works. Or it’s something that can be used. Like the bookcase I once built for our daughters and they used for the next 10 years. I miss that. But I am grateful that others can do it for me. And I can still haul a couple of 2x4s in my car when I need to. I can even load them in, which I couldn’t do two years ago.

Our lives change with CVID. But don’t all lives change? My life changed when I got married, when I gave birth to my children, when they went off to college, when my husband has gone through illnesses. Our lives change when we lose loved ones, or we accept a new job. And change, even the best change, is hard. We have to accommodate and learn to live within our new selves. What we need, I think, in all cases, is to possess a combination of grit and grace. In this case, we need grit to keep fighting, through trial and error, to improve our health and get the necessary medical care. To make it through another day, to still manage to love and care about others. And the grace to accept that we are not the same as we once were. That our lives are in many ways diminished, more unpredictable and constrained. But we’re still here. And fighting. And that’s sayin’ something. That’s sayin’ a lot.

Thank God for Humor

As many of you know, I am a singer and perform with a choir in the Greater Los Angeles  Area. We sing everything: 500 year old chants, classical, jazz, spirituals, modern…… you name it. Here is what happened yesterday:

Me (to my husband, Fred): I don’t know why, but I’m really tired today.

F: Well, I’m not surprised. You gave me a concert in the middle of the night.

Me: What?

F: In the middle of the night you just started singing in your sleep.

Me: What?????? (To the best of my  knowledge, I have never sung in my sleep. On the other hand, if my husband hadn’t just been telling me about it, I still wouldn’t know.)

F: You were singing in your sleep. In the middle of the night. You woke me up.

Me: Well, what was I singing? (Hoping it might be something really spectacular, like Bach’s Magnificat that we performed in December.)

F: I couldn’t tell. Your intervals between notes weren’t so great.

Me: A disappointed “Oh.”

F: But you had your tone placed correctly (he said helpfully). And you were singing out of your low register, so you were really sonorous. It was kind of echoing around the room.

Me: And you couldn’t tell at all what I was singing?

F: No. But you seemed to sing two different pieces. First you worked on one, and then you moved on to the other.

Me: Was I singing words at least?

F: Well, it was clear you were singing words in your dream, but I certainly couldn’t tell what they were. Or in what language.

Me: Oh.

F: And you were really LOUD. You kept me awake for an hour!

Me: Can I at least count it as practice time?

F: Uuummmmm…….. no, somehow I don’t think so.

I told all of this to the choir last night at rehearsal and had them in stitches. Our director jokingly suggested that my husband keep a roll of duct tape next to the bed so that if it happened again, he could get some sleep. I hope you all sleep well tonight. And if you dream, dream of music.  💤

The FLS Syndrome

Several, several years ago I was being treated by a wonderful herbalist, in addition to my Western doctors. My first visit, after his examination, I asked him if I was dying. He said no, but he told me that he was surprised I was still standing up.  My reply was that I wasn’t, really, but that I forced myself. I had a daughter in college, and, well, it was expensive, even with her scholarship and student loans. His reply was, “You’re still working??????” I replied that, ummmmm, well, yes. (Note to others: I would not recommend this. I would not be this sick if I had been willing to stop work several years before my health forced me to. But I could not figure out how we could make ends meet without my salary. More on this another day.)

Well, after my herbalist and I got all of this out of the way, he finally said, “You have what is known as the FLS Syndrome, or FLSS.”

“The what?”

“FLSS. Feels Like S*it Syndrome.”

With that, our relationship was cemented, and he treated me for 10 years.

Yesterday, I did get 5 things from my bathroom thrown away. But then I went out in the heat and did some necessary errands. Aaaaannndd…. came home with FLSS. Went right to bed and stayed there. Then stayed there most of today. Have to, have to, have to go get the smog check on the car or I will owe a huge fine to DMV.  But, darn, do I have a bad case of FLSS.

So, take care of yourselves this weekend, and I’ll be back Monday.