Zebra's Child

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

Category: Humorous

I Just Keep Doing It

The Whole Problem, I tell myself, is that I live across the street from Whole Foods. I can see the outside display from my kitchen window. And the things on their patio this time of year are just, well, too tempting to resist. I also can truthfully say that they are good for my mental health. So I keep buying them, because each month they have different ones, and I feel I need to add to my collection. It’s almost getting out of control, because I don’t have infinite space, given that I live in an apartment and all. But in fact, I think I exert remarkable self control, given how many different varieties there are. But, well, I guess that depends on who is making that judgement.

At any rate, here are of two my newest acquisitions. These Dahlias are annuals, so I need to revel in their short lived beauty.

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Dahlias   Image: Zebras Child 2019

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Dahlias   Image: Zebras Child 2019

 

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.

Weekend Whimsy: Ralf

Ralf the Frog         ©Zebra's Child

                                                    Ralf the Frog                       ©Zebra’s Child

HI. My name is Ralf. I’m a frog. Obviously. Just in case you hadn’t noticed, and all that. Thought I should introduce myself before I told you guys to have a Grrrrrrreat Weekend. If you find any flies out and about, just pass them on to me, please. Thanks. Very much appreciated.

Lines in the sand

This is wonderful writing that had me laughing out loud. Suffice it to say that after reading this, I am following her blog. This post will give me a marvelous image to conjure up the next time I am faced with the dreary sameness of hospital days. Which I fervently hope is not anytime soon. In the interest of full disclosure, I must confess that while I drink and enjoy good coffee, I am primarily a tea drinker, having been raised on good English tea. I find it soothing, comforting, delicious… and it reminds me that my beloved grandmother always had the tea tray out and set, waiting for me when I got home from school.

Electronicbaglady's Bag of Bits

I was watching one of those clichéd movie moments the other night instead of doing something productive. It was the moment when the hero says something similar to “That’s a line I will not cross!”. Usually there is dramatic body language attached, including miming drawing a line, presumably in mimed sand.

nooooooo

I recently discovered within myself a steely core of resistance in another area. In retrospect it was not really surprising but I was a little taken aback at the time.

It involved tea.

There is no doubt that clichés are popular because they resonate within us, and highlight something we all recognise. In this case, we all have limits to what we are prepared to do. Milgram’s infamous experiments purported to demonstrate that people can be pushed further if someone in a white coat and with an air of authority is doing the pushing. Whatever the validity of the…

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New Header Image

I had been thinking of changing the Header Image for some time, but had not been able to find a new image that really seemed right. This picture captures almost perfectly what it feels like to live my life with CVID.

xo,

Hannah

Pumps and 2x4s

As we get older one of the things that is not as sharp as it once was is our hearing.

Me:  I found the Ann Taylor black pumps Lisa was talking about.

Lisa is a friend and fellow blogger over at Privilege who was also at our older daughter’s 30th birthday party.

My husband didn’t hear the “Ann Taylor” part.

Him:  You found black pumps?

Me:  Uh, huh.  You know, the kind Lisa was talking about.

Him:  Lisa was talking about pumps?

Me:  Yeah, remember, on her blog?

Him:  What??

Me:  She even had a link to a picture.  She said these were good replacements for the designer ones she was taking  to NYC to wear out.

Him:  There are designer pumps?  And she’s going to wear them out?  Why would she want to do that?

Me: Yes.  She was going to use them with a little black dress.

Him:  Dead silence.  Then:  You and Lisa had a conversation about her taking pumps to NYC?  I don’t remember this conversation at the party.

Me, suddenly realizing:  No. Heels.  3 1/2″ black high heel pumps.  To wear with her little black dress.  You saw the picture of them on her web site.

Him:  Oh!!!!  High heels?  I couldn’t figure out why you and Lisa would have a conversation about pumps, let alone why she would take some to New York.

Just goes to show the difference between a male-female perspective I guess.  On the other hand, last spring when I was buying my pre-owned Acura, this is the conversation I had with the sales man.

Me, disappointed:  Oh.  The back seat doesn’t fold down.  I’m used to being able to haul stuff. (I have always done the repairs around the house.)

Sales Man: But look.  There’s this! And he opened and folded down a little door that provided access to the back seat.

Me: Oh good!!  I can still fit a couple of 2x4s in there.

Sales Man: Ummm……. No.  Actually, it’s for skis.

So you never know…….

Bringing Zebra Home

From the Toy Store to the B&B

This past weekend my husband and I went up to San Francisco to celebrate our older daughter’s 30th birthday.  The party was great fun, and we had a wonderful time all weekend.  We stayed in a lovely Bed and Breakfast on the edge of the Mission District, right as it merges into Noe Valley.  Which is to say that we were in a perfect location to take walks, see interesting things, and stop by interesting places.

On Saturday we were on our way to get a sandwich for lunch when we passed a small, very cool toy store.  What caught my eye in the display window was a large, stuffed zebra.  How could I not stop?  I stood on the sidewalk, wondering if the zebra was for sale.  There was a distinct possibility that it wasn’t.  It was wonderfully decorated with a pink party hat on its head, a frilly ballet skirt on its bum, and fairy wings on its shoulders.  Given the size constraints of the store, I thought that the zebra was used solely for display purposes, since it enabled the store to display products vertically as well as horizontally.  I went inside to ask, but the clerk was busy, and we were hungry, so we went back outside and kept walking towards lunch.  I glanced at the zebra again through the window on our way home. But by then I was tired, and needed to get some rest before our daughter’s party.

However, I couldn’t get the zebra out of my head.  The next day I thought, “Well, the toy store probably won’t be open on Sunday.”  We went to brunch with our daughter and son-in-law.  Then I needed to rest.  When all was said and done for the day, I looked at my watch.  6:00 pm.  Surely the toy store wouldn’t be open that late on a Sunday.  So I made a deal with myself.  I’d try to find the toy store’s name and phone number, and call.  Then I’d take it from there.

Google to the rescue.  I found the information I needed.  I called, very surprised when someone answered.

Nice Man on the other end of the line: The Ark Toy Company.  May I help you?

Me:  Hi.  You know that big zebra you have in the window?  Is it for sale? (I kind of held my breath.)

Nice Man:  Yes.

Me:  It’s not just for display?

Nice Man: Oh no, it’s for sale.

Me:  (Further holding of breath.)  How much is it?  (I have seen animals that size for $300 and up.)

Nice Man:  $100.

Me: $100??

Nice Man:  Yes.

Me:  I’m so there.  You’re open until 7:00?  I’ll be there in 15 minutes.

Which I was.  In 10 minutes actually.  A significant part of which was uphill.  In San Francisco.

We arrived (a little out of breath), and stood there looking in the window for a second.  Yep, there was the zebra.  He was big, but beautiful.  We went inside.  I said that I had called about the zebra.  The Nice Man smiled and said he would get it out of the window.  Which he did.  All of it.  It wasn’t big, it was BIG.  Have I mentioned that I have very little spatial sense of size?  Yeah, well…..  I have to rely on my husband or one of my daughters to tell me if a particular item will fit in a particular place.  I looked at the zebra.  I stood next to the zebra.  I mean the top of his head reached almost to my hip.  I’m not that tall, but still.

I looked at my husband.  We had already talked about where I would put the zebra, so that wasn’t an issue.  But it was not going to fit as well as I had thought.  My husband asked me what I would do if I got the zebra home and it was simply too big.  “Give it to Barbara’s grandchildren,” was my response.  (The grandchildren’s mothers, Barbara’s daughters, have no more room in their houses for a large stuffed animal than I do.  But it sounded good.)  So we decided to take the zebra home.

Doing so on a plane would have course been out of the question, but we were traveling by train so it was kinda-sorta feasible.  Kinda-sorta.  And just let me say, by the way, that Amtrack is a lovely way to travel.  Among other things, you meet kindred spirits on the train.

Zebra is heavy, but luckily there is a nice round middle part, which you can tuck your arm around.  My husband carried the zebra back to the B&B, but I insisted on doing the carrying to the train.  And here’s another thing I like about trains: no one looked at me as if I had completely lost my mind. (I have, of course, but never mind.) I managed to get Extremely Large Zebra up the extremely narrow stairs to our extremely small sleeping compartment.  There was not much room for us once we sorted everything and got settled.

The trip from San Francisco to Los Angeles by Amtrack takes 12 hours.  So you have a chance to talk to lots of people if you wander around and eat in the dining car. But here’s the great thing: if somehow in conversation I would mention, “You should see what I have in my sleeping compartment,” people’s immediate reaction was an excited, “Oh you’re the one with the zebra! That zebra is so cool.”  One young woman said she had taken a picture of me getting on the train with the zebra.  Didn’t I tell you Amtrack is a wonderful way to travel?

Home:

And now…….

Naming Zebra

I could, of course, just call the zebra Zebra.  But I’m thinking that a more specific name might be nice. A few names have occurred to me, but I would like some help please.  So, all of you out there who are members of the Zebra Club (and I count all of my readers as members of the Zebra Club, whether or not you are immune deficient), how about some names?  Leave a comment anytime between now and next Sunday evening, May 2, with a name suggestion. You can, in fact, make several name suggestions.  If you don’t want to leave a comment with your real name, make up a cute name for yourself or comment as anonymous.  I promise I will consider the names in my head plus all of yours.

Something to Capture Your Heart

First, let me make it clear that I am not a professional musician.  While I do have some training, I have neither the six-year BFA and MFA required, nor the patience with vacillating paychecks.  But each one of us needs something that captures our heart and nourishes us, and for me that is singing. Five years ago, I decided to join the volunteer summer choir at our church.  I hadn’t trained or sung seriously in the twenty-one years since I had been pregnant with our younger daughter.  I figured that summer choir was a good way to sort of get my hand back in.

So I showed up and sang almost every Sunday that summer of 2005.  In August, Olga, our pastoral care priest, suggested that I audition for the regular choirs.  I resisted.  I gave her all the reasons why I couldn’t.  I had fibromyalgia and was stretching it just to work full time.  I couldn’t possibly commit to singing every Sunday.  I hadn’t sung seriously in twenty-one years and was very, very out of practice.  I didn’t have time.  I didn’t have the stamina.  And for goodness sake, if you knew ahead of time you were going to be absent, you had to fill out an absence form.  What if I got sick? And I probably gave her several more excuses that I can no longer remember.  Olga is very tenacious. She let it drop for a few weeks, and then brought it up again.  Both times, she said,  “Hannah, I’ve watched you every Sunday.  You are so happy when you sing.  You need to audition.  At least go talk to the choir director, because I think some of your preconceptions are not necessarily true.”  So I reluctantly agreed to go talk to James.  After all, I wasn’t committing to actually auditioning.

I went home and that evening, mentioned at the dinner table that Olga really was bugging me to audition. Our younger daughter was home, and both she and my husband immediately said that they thought that Olga was right, and I should.  They wouldn’t listen to my excuses either.  For them I even added the very real concern that I hadn’t auditioned for anything in over twenty years and I was a lousy vocal sight-reader. And the level of musicianship required?  I mean, these choirs sing Mozart masses on Christmas Eve. I figured I couldn’t possibly pass the audition for any choir that sang full works with a Köchel number.  Oh, and on top of everything else, vocal auditions terrify me.  Acting auditions?  No sweat.  Not only am I a natural ham, but I have had only minimal training in theater, and thus hardly any of my ego is involved.  And I would never dream of auditioning for an acting position at a semi professional level.  But vocal auditions? I have been known to be so nervous that all I could produce was a tiny, mousy, unfocused tone.  I also don’t have a lot of confidence in my voice.  I measure myself against professional classical singers.  Ridiculous, I know, since I have had probably less than 1% of the training they have had.  But there’s my perfectionism again.  And I care desperately about singing.

I called our older daughter in New York.  First, let me say that even though she had only met Olga after she had graduated from college and was living and working in New York, she has a deep and abiding respect for Olga’s perception of things.  To this day, if she is trying to get me to do something that she knows would be good for me, and I am resisting, she will frequently say in a no-nonsense tone, “I think you should go talk to Olga about this.”  Secondly, my husband and our two children are my biggest cheerleaders, frequently having far more confidence in my abilities than I do myself.  Our older daughter said something to the effect of, “Olga is telling you to audition because you are so obviously happy when you sing?  Go for it. You’ll be fine.”

Well, you can see that my excuses had about as much affect on my family as they did on our pastoral care priest.  And my husband absolutely agreed that I was happier when I sang.  I’d sung in the early years of our marriage, and now he was watching me sing again. He said I was not just happier while I was singing, but just happier period.  I asked him if he would mind the time commitment involved. He said that he figured it was a good trade.  While it was true that he would see me less, I was happier when I was singing, and he thought that would be good all ’round.

So one Sunday after the summer choir had sung for the 11:00 service, I talked with our choir director. It turns out that Olga was right (Sigh. She usually is.) and I had several misconceptions about how the two adult choirs worked.  First, and perhaps most importantly for me, I wouldn’t be committed to sing every Sunday.  On weeks you were scheduled to perform, the total time commitment was approximately 7 hours. Other weeks only required 11/2 – 2 hours. Dress rehearsals before major performances were an additional 3 hours, usually on a Saturday.  And if you were sick, you could phone in your absence to the choir hot line.

That all actually sounded manageable to me.  At least manageable enough to try.  I truly am scared of vocal auditions, however, and I am not naturally a courageous person.  But singing is something that reaches deep inside of me and helps me feel whole and complete. It is hard work, but for me it is also healing. I had to take a deep breath to steady my nerves before I asked James, “How do I put myself on the ‘I would like to audition please’ list?”