Zebra's Child

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

Category: Taking Care of Ourselves

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?

15 Steps Was an Aerobic Activity

As more time passes since my last intractable infection and hospitalization, my health has slowly (ever SO slowly) improved. I won’t say steadily, because with a PID there are more ups and downs in our health than we can even keep track of. But if I were to look at a graph of my health over the last 10 years, the overall slope would not only be positive but the rate of improvement would be increasing.

I’m well aware that if I had maintained my stubborn insistence of continuing to teach full time for another 7 years (or even 1 or 2), this would not be the case. But my doctors told me that I really didn’t have much of a choice: I was steadily getting sicker and sicker, and unless I was willing to consider early retirement on disability I was headed toward putting my life at risk. I may have an over abundance of stubbornness in my genes, but that language was pretty stark, and forced me to pay attention. This was 4 years ago, during the time I was hospitalized for 2 weeks, housebound for 7 months, needed to be driven to all my medical appointments, and discovered that leaving the couch to walk 15 steps to the bathroom was an aerobic activity. So at that point, I didn’t need as much convincing as I once did. I also knew, if I was honest with myself, that I had been forcing my body beyond it’s limits for about a decade. And it had all finally caught up with me.

But I have spent the last 4 years slowly rebuilding my health as best I can. And at this point, I can take a more active role in improving my health. So next up: start small.

Balancing Medical Conditions

It’s so frustrating! Those of us with a PID, or probably any other severe health condition, such as cancer, dialysis, MS, RA, etc, find that the balancing act within our bodies is, shall we say, extremely complicated. And that’s putting it mildly.

Example: I am prone to extreme edema, and need to balance it with diarrhetic. But then my sodium levels get dangerously low, so my doctors start to freak out. I mean, really freak out since extremely low sodium can result in seizers and death. I can’t just eat more salt, since too much of that causes my edema to get worse. And I can’t just double my water intake, since too much water dilutes my sodium levels. So I try to judge the diarrhetic dosage, depending on what my body is doing that day. High temperatures make my edema worse, so after I start to puff up, I have to take more hydrochlorothiazide for a few days. But oh, wait. I had a cold with a cough for a few days, so I took some cough medicine. Which had a decongest in it, which means it also acted as a diarrhetic. So, whoops! Too much diarrhetic. So now I’m whizzened, slightly dizzy and look like a prune.

And, well…… it never seems to end. Sometimes I feel like all my time is spent trying to balance medication, stay healthy, and get necessary rest. Most people can do that in the background of their days. Those of us with critical health issues often seem to spend most of our day trying to stay on top of those issues. Or at least it sometimes it feels that way.

Sigh. I think I’ll go walk the dog. I almost always feel better after I’ve walked the dog. And since it’s already dark, at least I won’t notice that I look like a prune.

Today I Was Going to Write………

about fitness. As in, trying to stay fit when you have a major medical condition. But I’m so tired from trying to increase my fitness that I’m not fit to write a post. Luckily, irony and I are good friends.

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. 😦

Is There an App???

All of us with a PID (Primary Immune Deficiency) or any other debilitating medical condition are trying like crazy to stay as healthy as we can and hopefully work our way toward getting healthier. I would say “There’s an app for that!” but I’m not so sure there is. The major difficulty in trying to chart our fitness/health progress, as i see it, is that for us, it is so variable. Sometimes we inch our way forward. Sometimes it seems we can progress by comparative leaps and bounds. And, well, sometimes those differences can be on back to back days.

And sometimes, of course, it’s all we can do to get out of bed. After a day and a half of infusions, I often sleep for the better part of two days. And for me, at that particular point in time, that is me working to stay healthy. And what app understands that? The automatic “steps/milage/flights of stairs climbed” tracker that came with my phone shows that Sunday I walked a total of about 800 steps. That was two days after my infusions. Monday it shows I walked about 3,500 steps. I felt better by Monday. Not my best day by any means, but a quite remarkable amount of steps for me, 3 days out from my infusions.

Why am I even bothering with trying to find a fitness app, or trying to keep track of my steps? Because if I have a goal I’m working toward, no matter how small, I’m much more likely to push myself just a little harder. If it’s 8:00 PM and I’m only 62 steps away from meeting my goal for the day, I will gladly walk around the house in circles in order to get in those last 62 steps.

But how exactly do I set realistic goals on fitness apps – even the one that my insurance provider gives to me free? Don’t get me wrong: I’m not comparing myself to the people out there who are healthy and for whom fitness is just a way of life (as it used to be for me). I’m just comparing me to myself on similar days. For me to have walked 3,500 steps on Monday, three days after my infusions is a big deal. But it still doesn’t reach my own software stated goal. And yes, of course I already know that just one or two days after infusions I won’t even come close to reaching my goal. But it’s discouraging to see the puny progress on Sunday’s graph when I know that 800 steps was an accomplishment, all things considered.

And I’m not even counting the days or weeks or months in which I am battling active infections because, well, at those times I don’t even look at my graphs. At that point I fingure I’m doing a bang up job just making it from one day to another without too much complaining.

I know that on many Health or Fitness apps I can go in and adjust my goals. But that would take effort on days I don’t have much effort to muster, and I would also feel a little stupid doing it. As in, “What’s wrong with this lady that she can’t even make up her mind what her goals are?” And yes, I do make comments on my pedometer tracked walks as to how I’m feeling health-wise. But what I need is an app that has the ability to have a moveable target, depending on how many days out from infusions I am.

So – does anyone have a suggestion? Guidance? Words of wisdom? If so, please, please share.

Because at the moment, I really don’t think there is an app for that. At least not one that I’ve been able to find.

Still Sick

So sorry, guys. I’m still sick. Will check back in when I’m better. Promise.

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



In trying to write a post five times a week, I have discovered three things (well, at least three):

  1. I don’t have the energy to both write each day and tidy up the house.
  2. I will choose writing over tidying every time.
  3. The house has now gotten so untidy that it is starting to depress me.

Since I am a person who has struggled with depression for years (and yes, I take medication for it), I have decided that today, with whatever amount of energy I have, I will tidy up as much as I can. I know from experience that a tidy house will make me feel cheerier. It gives me at least one aspect of my life over which I have some control. The problem is that I hate spending my limited energy actually doing the tidying. So I put it off. But getting it done is actually a way of taking care of myself, as long as I don’t over do it.

So today I will not let myself write until I have gotten at least two areas clean, clear, and peaceful. The oxymoron embedded in that sentence can be explained by telling you that I actually wrote this post last night.  😉

Now do something for yourself today that makes you feel better. Even if that something is taking a nap.

See you tomorrow. xo

Little Fixes

Sometimes the little fixes to my health or appointment routine end up being box fixes. (I of course meant big fixes, but I’m going to let the typo stand. Somehow ‘box fixes’ feels like an appropriate image too.) And I never know which fixes will be bad, good, terrible, or great. Our CVID lives are such a mixture of accommodations, some normalcy every once in a while, medications, infusions, doctor visits, routines, friendships, family, depression, joy, frustration…….. and, well, everything else. It’s often so hard to tease out the changes that might help. And even then it’s a matter of trail and error. But every once in awhile, I get something really right.

I get a half day infusion of magnesium sulfate (MgSO4) – sorry, i can’t figure out how to put in a subscript – the day before my IVIG, which enormously helps the side effect of a severe migraine during the infusion. My IVIGs take all day, so that appointment is always first thing in the morning.  Just from habit, I made the MgSO4 first thing in the morning when we started those about two years ago. I figured that I might as well get them out of the way, and then have the rest of the day to do something. But because I feel pretty crappy even after those infusions, I would get home and just sit in a chair for the rest of the day, waiting until I could go to bed that night.

And there is an additional problem with that early morning timing. My two infusion days are usually Thursday/Friday, and my rehearsal night is Wednesday, which means on those nights I don’t even get home until 10:00. I have to allow an hour to get to the hospital, and I move slowly in the morning  under the best of circumstances. So getting up super early the morning after rehearsal is exhausting in and of itself.

Several months ago, I moved the MgSO4 to an 11:30 appointment. That certainly helped, but still wasn’t great. Then one day the 11:30 slot wasn’t open, and I had to take a 2:00. I wasn’t happy about that because I didn’t want to get home at 5:00pm, but that was the earliest slot open. Well, God moves in mysterious ways. The 2:00 appointment seemed almost magical. I tried it for a second appointment. Then a third. And WOW! I can sleep as late as I need to the morning after rehearsal, and I don’t need to leave the house until 1:00pm. 1:00pm for a 2:00 appointment! I can sleep, get up and eat breakfast, and actually have time to do something before I leave for the hospital. I am amazed at what a difference that makes. I no longer feel that infusions take up two entire days every three weeks. It really feels like 1½ days now. That is a 25% reduction in time. And 25% is major. It feels like I have a little bit of my life back. And that’s a big fix.

I’ll see  you guys on Monday. Have a good weekend.  xo

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