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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