Living With Common Variable Immune Deficiency and It's Autoimmune Friends
So earlier today, after I put up 15 Steps Was an Aerobic Activity, a screen popped up telling me, “Congratulations! You just published your 100th post!” I knew I was in the 90s, but hadn’t been keeping track. So I’m thrilled. It took 5 years to reach this point, but that doesn’t matter. Because, yeah, I have a primary immune deficiency! And I just published my
100th Post!!!
So……..
I. Am. Thrilled.
This is me:
Only I have short curly hair, rather than long. 😉
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.
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.
Last weekend we performed one of Gwyneth Walker’s marvelous songs, God Speaks to Us. The text is one of Rainer Maria Rilke’s poems from his Book of Hours: Love Poems to God, and is, perhaps, my favorite of Gwyneth Walker’s compositions. Unfortunately I have been unable to find a YouTube performance of it, but the translation that Gwyneth Walker uses is the one by Joanna Macy and Anita Barrows:
God speaks to each of us as he makes us,
then walks with us silently out of the night.These are words we dimly hear:
You, sent out beyond your recall,
go to the limits of your longing.
Embody me.Flare up like flame
and make big shadows I can move in.Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don’t let yourself lose me.Nearby is the country they call life.
You will know it by its seriousness.
Give me your hand.
— Rainer Maria Rilke
The line that has always stopped me, because it doesn’t seem to fit, is “You will know it by it’s seriousness,” so I have looked up some other translations from the German. While the other translations that I have found do not flow as well, they have helped me get a better sense of what this line might mean. The two I have found that are the most helpful are
You will know it when you arrive/by how real it is
You will know it when you arrive/by it’s absence of illusion (this translation is by Paul Weinfiled)
Life is real. Those of us with a PID, or any other chronic health condition for that matter, know this unequivocally. In many ways life for us is harsh and unforgiving. And we certainly have few illusions left about the reality of our lives. Yet I still believe that we are called to “Go to the limits of our longing.”
But what does that mean, when our bodies will no longer do what they once did; when our lives are circumscribed by limitations of exhaustion, hours of infusions, side effects from medications, and concerns about how to pay for our medical care? Have the limits of our longing changed, or do they still flare up like a flame within us in the same form that they once did?
I had two really, really good days in a row: Saturday and Sunday. And then………. BANG…… fizzle. Could barely get out of bed this morning after 12 hours of sleep, and wish I could go right back and could sleep till dinner, eat, and go back to sleep till morning. Discouraging? Yes, definitely. But I’ve got to concentrate on the fact that I had 2 really good days in a row, and a week and a half ago, I had 3 really good days. I didn’t used to have any days this good. I know you all understand days where you can barely move through the exhaustion! Please remind me to concentrate on the good days.
Hello Everyone. It’s been a long year. Which is to say a difficult year. I’ve had ups and downs with my health; something all of you have had more experience with than I’m sure you’ve ever wanted to. But perhaps more significantly, my husband, who has unwillingly gathered significant medical disabilities over the years, has had repeated injuries over these last twelve months. Which means I became the caretaker for both of us. (More about that later.)
But we are both better now, and I find that I am grateful for many things. One of them is the presence of all of you. In logging onto the site, I find that not only have many of you continued to check in over the past year, but I have gained significant readership as well. (Welcome all of you in Central and South America especially!) That is, to me, literally overwhelming.
So thank you one and all. I will continue to post occasionally, as my energies allow. And any comments, requests or musings from you all would be most welcome.
~Hannah
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.
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.
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
Well, the medication to help me sleep has finally completely washed out of my system. I thought it had all disappeared a few weeks ago, but obviously it hadn’t. How do I know? Because then I was able to sleep some nights, and now I can’t. I doze in fits and starts, and probably only sleep solidly for a few hours. And without deep sleep, my blood pressure goes up, as does my anxiety and my Obsessive Compulsive Disorder.
In the 80’s, we were at the height of the drug awareness campaigns in the schools. The counselor at my school had this poster on her door: This is your brain (cue picture of a profile of a head with a brain inside with the little squiggles representing the folds in the gray matter), then below it, This is your brain on drugs (cue a picture of a fried egg in a skillet. Totally fried.).
Well, I don’t have a picture, but this is what my brain looks like as a result of very little sleep over a couple of weeks:
💭 There is not a thought inside the thought bubble because I can’t fit them all in that tiny space. Even though they are short. And random: I should think of a post to write. Gotta write a post. No, wait, I need to sleep. Can’t. Oh well, should tidy up at least the front room. Won’t take long. Will feel better if I do. No, gotta sleep. Can’t. Post. Post. Has to be perfect or no one will like it. Walk dog. Read. Can’t concentrate. Walking will make both the dog and I feel better. No. No energy. Walking will give me energy. Poor dog. Write post. Can’t think of anything. Just sit down and type. Just want to relax. Nap. Rats, doesn’t work. Sleep??? Please? What if I can’t think of anything to say? What if I’m just boring and no one wants to read. Gotta be funny. Can’t be funny today. Can’t think. What if I never have any ideas again. Sleep?? Pleeeaaasse? Dagnabbit.
My brain is really more chaotic than that, and I wish I could make it funnier. But in saner moments I realize that half of what makes this writing business work, perhaps more than half, is just showing up. Just writing every day, and slowly, hopefully, getting better at this.
When I started this blog, I thought that every post should have some deep meaningful content. That didn’t work out so well in terms of frequent posting; I would just get frozen for weeks or months at a time, especially since even thinking was more than I could usually manage. And then I’d take days just to write and rewrite one post.
When I came back to the blog this time, I told myself that I would just write whatever was on my mind that day, and get in the habit of posting almost every day. And then go from there. And hopefully both the blog and I would grow. I hope that I am, at least occasionally, writing things that are relevant to you guys as well. I’m trying to give a snapshot of what living with CVID (and various other complicating conditions) is like, so that you others out there do not feel so alone. And if I write about trying to live as normal a life as I can, then that helps me continue to try to do just that.
Do any of you have topics that you would like me to write about? Or thoughts of your own to share? I’d love to hear your suggestions and requests. Please don’t be shy. Leave a comment or send me an email.
And it’s an 8 hour infusion day. Please send your good thoughts. 😘
Yesterday I had to give myself a pep talk just to allow myself to take it easy the rest of the day after my lydocaine injections. Why is that? Why do I feel so guilty doing “nothing”? In my head, I know that doing “nothing” is not, in fact, doing nothing. Taking care of ourselves is important. I fuss at my friends when they are not taking care of themselves. But when it comes down to me, it feels selfish.
It is, in fact, no such thing. I know that if i don’t take care of me, then I get so sick that others have to take care of me, and that isn’t fair to them. There are plenty of times when I get sick and need others to care for me, even when I have been very careful about regulating my energy, not pushing myself, getting enough rest. So I certainly don’t need to add to that.
Sometimes when I push myself too hard, it is out of rebellion; a sense that darn it, I’m just going to try to lead a “normal” life. But sometimes I just get so caught up in things that I don’t notice that I’ve pushed myself past my limits until it’s so late. And sometimes it’s just my body doing it’s unpredictable uniqueness: I’m not sleeping well (currently), or I’ve been exposed to something just in the course of living my life, and my body is working overtime to fight against whatever the germ of the day was.
And sometimes my body just checks out for a day, or two, or three, and says, “Nope, not working today. Don’t care what you want. Just. Not. Doing it.
And sometimes………. well, who knows. But I’m resting today. My body isn’t giving me much choice. Dagnabbit.
Zebra's Child 