Zebra's Child

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

Tag: Life With CVID

Ordinary Beauty

Flowers and Light

                                Flowers and Light          ©Zebra’s Child

I’m still doing not much other than sleeping, which is exactly what my body needs. I can’t always sleep when I most need to because my sleep cycle is one more part of my body that doesn’t always function quite the way it should. So I am extremely grateful that Wednesday/Thursday’s infusions have balanced that out a little and has enabled me to get some much needed rest. Such is the miracle of adequate gamma globulin levels that the bottom of my left foot is already completely healed, and my right foot is doing it’s best to heal as well. This right foot is a little trickier because every time I walk on it the split opens up again, so it’s going to take a little longer. But with the infusion of gamma globulin, I know it will indeed heal with time.

The weather is a little cooler today, which is a welcome relief. The sinking sun this time of day is shining through leaves and flowers, transforming their ordinary beauty into incandescent light. All will be well.

Post Infusions

400px-cartoon-camel-clip-art-291369

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.

Consistency

Yesterday I felt pretty good. Today I feel pretty terrible. Such is the CVID life. I’m dizzy, tired, and have no energy. Perhaps it’s because I’ve pushed myself too hard these last few days, or because I didn’t sleep well, or because it’s hot, or because I ate/drank some foods that my digestive system didn’t agree with, perhaps it’s because….. well, you get it. Everyone with a severe chronic disease gets it.

One of the problems with a serious chronic condition is the seeming randomness of it from day to day. Sometimes we can track down a cause and effect (i.e., my sleep app confirmed what I already knew: I didn’t sleep well), but sometimes we have no idea. Or we can guess on some things, but have no idea what else might be playing into it. It is the seeming randomness that drives me crazy. I want to scream, “I had plans for today, dagnabbit!” But instead, I’m spending most of the day in bed, sleeping and resting, which obviously my body needs. Which is part of Taking Care of Ourselves.

But I have been writing a lot about fitness lately, and the question is, how do we keep up with a fitness routine on days like today?

The first thing is to realize that we can’t compare ourselves with healthy people. My staying in bed today isn’t laziness or giving up. Neither is it a case of staying in bed simply because that would be the easy thing to do. It is, in fact, what my body is demanding. I’m sure it has been hinting to me over the last few days that I needed to get more rest, but I ignored it, and so here I am, basically immobilized for the day.

So what to do about fitness on days like today? We do what we can. The important thing in exercise, or any discipline for that matter, is consistency. It is almost always better to do something rather than nothing. What have I done so far today? I spent at least 20 minutes stretching every which way under the covers before I got up. That practice is not only good for my overall health, it helps to counteract the increase in fibromyalgic pain that would occur from staying in bed most of the day. I also should be able to still take the dog for a short walk. And I hope to still be able to go to rehearsal. Singing will help me feel better.

Slow and Steady Wins the Race

I’ve been talking a lot about fitness, and how we can try to stay fit and healthy when the very nature of our disease means that we’re not healthy. We depend upon blood donors to stay alive and even the smallest, random infection can lay us low for days, or worse, put us in the hospital on IVs. But we have to work to stay as healthy as we can, or we are even more prone to succumbing to a viral or bacterial  illness. I’ve talked before about managing our limited energy, trying to stay tuned in to our bodies and not overdoing it, trying to be careful about how much we schedule in a day, and trying to rest when we need to rest, even when we really want to get just one more thing done, like a “normal” person.

But lately, I’ve talked more about how we can systematically build up our strength. One of my barriers to this is that if I’ve done a lot during the day, and am exhausted, I think, “Well, I don’t need to exercise today, right? I mean, I’ve done a  lot, and I’m exhausted!”

Here’s the thing I’m learning, though. Scurrying around, squirrel like, from one thing to another all day is not the same as exercise. Sure, we use muscles doing things like lifting grocery bags, taking care of laundry, etc, but it’s not the same as targeted exercise.

Using grocery bags as an example, carrying them inside is not the same as using barbell weights to strengthen our arms and shoulders, no matter how much we wish it was. In fact, using the weights on a regular basis enables us to carry in the groceries without getting as exhausted doing so, because we’ve built up those muscles in our shoulders and back. My small step philosophy: If you hate using weights, follow the advice one of my nurses gave me a few years ago, and use them while you are watching a show. (Or my favorite, while you are listening to music.) You won’t mind them nearly as much. And don’t start out with the heavy ones.

A couple of years after my first hospitalization post-diagnosis, I had lost so much muscle mass that my regular 2 lb weights felt like they weighed 20 lbs. That’s not an exaggeration. So I tracked down a sporting goods store that carried ½ lb weights (which by itself was a huge effort back then), went in (also a huge effort), and asked them where their weights were. The sales clerk took me over to the display, and I picked up the half pounders, one in each hand, and was pleased. The clerk, trying to be helpful, suggested that if I wanted something lighter than the 2 lb weights I had at home, that I go for the 1 pounders because the ½ pounders were so light it would be like lifting nothing. I told him that I was going to purchase both the ½ lb weights and the 1 lb weights, but that I needed to start with the ½ pounders because I had been extremely ill, and even the half pounders were going to be a challenge. He seemed to mean it when he said he was sorry that I had been so ill, and that he hoped the weights would help to build up my strength. (Note here: You often can only find ½ lb weights in the children’s exercise section. They were so small my hand barely fit in the bar between the ends.)

Several days later I started to use the half pound weights. I found I could do 5 repetitions of several exercises without completely wiping myself out. That was my goal: weights that I would be able to use that would make me tired, but not wipe me out. I worked at upping my repetitions and number of exercises, until I was ready to graduate to the 1 lb weights, and eventually get back to my 2 lb weights. I might eventually reach 3 lbs, but at the moment I’m happy with 2. When a routine gets easy, I add more repetitions and/or more exercises.

You don’t have to be a fitness nut to do this, and you don’t have to think of it as fun. I can assure you that my reaction is definitely not, “Oh goody, now I get to use my weights!” But I love what the process enables me to do: lift a box that needs to be moved and not have to wait for one of my adult kids to be around, carry in the heavy groceries without having to lie down for a half hour afterwards, or lift a toddler into a car seat.

And remember that building up endurance and strength takes awhile even for someone young and healthy, and I am neither. So all of this requires patience, something I don’t always have a lot of. But the rewards are worth it; I can work toward regaining little portions of my life, here and there. And that is something I used to think I would never be able to do.

Ups and Downs

Hi Guys. I’ve really missed talking to you. In general, I’m doing better than I was for those two weeks after Easter. It seems that I’ve got my medication sorted out, which is helping tremendously, and in general, my sleep has improved. Today I’m really tired because I had several days in a row that were filled with lots of chores and errands. But the reason I was able to get those chores and errands done was that I had several good days this last week, and that was wonderful! Most notable for me was that I was able to get my study tidied up. The clutter had built up and it was to the point that it depressed me to sit down at my desk. Now the small room feels spacious again, and orderly, and is once again a room I love spending time in.

The ups and downs of exhaustion are part and parcel of CVID, but I hope that if I rest today and tomorrow, I’ll have more energy again in a few days. Thanks for understanding.

xoxo
Hannah

Trying to recover…….

This year the week after Easter happened to coincide with various meetings and medical appointments that I couldn’t get out of. It is usually my week to hibernate and sleep as much as I can. But I haven’t been sleeping as well as I had been a few weeks ago due to a change in medications, and every day seemed to have an appointment of one kind or another scheduled that required me to be alert and knowing what I was talking about. Not easy when exhaustion makes my brain feel like it is stuffed with pre-spun wool. For that matter, pre-carded and pre-washed as well. For those of you who have never gotten into spinning,  that means that the wool has just been shorn from the sheep and still has all the sticky lanolin and burs in it. Darned burs.

At any rate, I’m trying to take this week really easy and sleep as much as I can. And I have infusions at the end of this week, so I should be doing better next week. I hope. So right now I’m going to eat, and then try to go back to bed. This is my way of trying to accept that my body just can’t do what it used to.

Start Small

Really, really small.

Microscopically small if necessary.

I don’t know about you, but I respond best to success. If I never seem to succeed, I will eventually give up. I’ve got a lot of grit, but really? Constant failure does me in every time, and I think that’s true for all of us. So if those of us with significant health issues want to start taking a more active roll in improving our health, where should we start? We can’t even dream of comparing ourselves with people who are able to make it through an hour at the gym every day, or run a mile, or, heck, even manage to have enough energy to make it through a one hour gentle yoga class. So what do we do?

We start small. Really small. Never mind inch by inch. I’m all for millimeter-ing. We take steps so small that perhaps only we can see it. A close friend of mine recently had a fall that caused many broken bones, which was then followed by a stroke that left her right side paralyzed. She is a go-er and a do-er, and has been all her life, so this was extremely difficult for her. I suggested that, in consultation with her physical therapists of course, she set her first goal at something like 2 steps unassisted. Once she met that goal, she could raise the bar. And I reminded her that the more often she met her goals, the faster her healing would progress.

Admittedly, those of us with chronic conditions have bodies that respond slightly differently than someone who was basically healthy before an accident or injury occurred. But we can apply the same principles. Remember that 15 Steps Was an Aerobic Activity. And after my first hospitalization 6 years ago, my goal was to reach a time when the 15 steps to the bathroom and back would only leave me shaking in a fetal position for 50 minutes instead of an hour. It took a many weeks, but that time did finally come. And over the course of several months, the trip to the bathroom got to the point where it no longer wiped me out. Months, you say??? Yeah, but that was as big a victory for me as running a 10K marathon would be for many people. And runners spend months training for a marathon event, right?

So we need to give ourselves pats on the back, kudos, blue ribbons, gold stars, badges, trophies, anything that will let us know that we have accomplished something mighty.

For we are Mighty Warriors.

And maybe we should start a Mighty Warriors club.

Who’s in?

Infusion Days

Hi Guys,

I’ve been hooked to a MgSO4 IV for much of today, and will be hooked to my IVIG at the hospital all day tomorrow. Will try to get my next post up over the weekend. Thanks for staying tuned. 😉

xo,     Hannah