This is a picture of my head at the moment. Flourishing, unfortunately.
Ah, the blessing and curse of gamma globulin infusions. I haven’t been posting as often because I’ve had high pain levels for the last two weeks. Please bear in mind that my body is in pain every hour of every day, and it’s just something I live with. Sort of like living with the tasks of changing diapers or cleaning bathrooms, only worse. It’s been that way for about 30 years. But curling up in a ball and not doing anything on a daily basis is just not an option for me, so I do my best to just get on with the business of living as best I can.
Until I can’t. Which happens sometimes. Sometimes it’s because I’m ill or exhausted or my body isn’t working correctly. But sometimes it’s because the pain has gotten to the point where I can’t concentrate enough to read or hold a coherent conversation, or even follow the clues in a TV crime drama. Now that’s really sad! Clues laid out so I can figure out who did it, and my brain doesn’t work? Ouch. I love figuring out who did it. (Yes, I am a fan of murder mysteries.)
That was the level of pain after my last infusion. For those of you who have a PID, I know you are familiar with the problem. Gamma Globulin literally keeps us alive, just as much as dialysis keeps a kidney patient alive. But the treatment for many of us comes with some pretty severe side effects. I am given some hard hitting pre-meds before and during my full day IVIG, and I also have a half day infusion the day before specifically to help with the out-of-control headache that the IVIG causes. But sometimes all those pre-meds don’t measure up to the hard hitting torture vice that can take over my head afterwards. My infusion two weeks ago was one of those times.
So. I am better, but but still seem to have been left alone in the dungeon with the inquisitor. He just seems to have dialed the strength down one notch. Or maybe not. At any rate, maybe tomorrow will be better. I hope so.
My body’s progress toward healing and infusion recovery is slow but steady. It’s complicated by the fact that I’m still not sleeping well at night. Don’t know whether it’s the heat or just that I’m unsettled. At any rate, one of my solutions when I don’t feel well is to look for beauty. We had to go out for groceries this afternoon, and I saw these flowers along the way. Capturing them on film definitely lifted my spirits.
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.
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 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.
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.
I’ve got to remember that the view through the fence is beautiful. But dagnabit! Some days I just hate the fence. The fact that the fence is there. That it interferes with the view. Some days the fence is just a fact of life and other days I think the fence is really ugly. Sometimes the fence has a gate I can pass through. Other days the gate is locked and I don’t have the key. And somedays I can’t even find the gate, and I can’t be sure that I will ever find it again.
The fence, of course, is my illness. This Common Variable Immune Deficiency that hems my life in, sometimes completely surrounding me with no way out. I will be hooked up to this IV machine for a day and a half every 3 weeks for the rest of my life, unless at some point a scientist figures out a way to perform gene therapy so that a surgeon can replace my defective gene. Which isn’t, in fact, science fiction. That therapy is on the horizon, but may not be actually fully developed and practical for decades. If ever. It all depends, as all things scientific do, on funding. That treatment would probably take the entire fence down, and I wold be able to live my life like a normal person. But in the decades of meantime…… there is this darn fence. And I really wish it wasn’t there.
I’m sitting here in the hospital hooked up to an IV, and will return at the crack of dawn tomorrow to be hooked up for the entire day. And then I will feel crappy for several days, and hopefully feel better along about Wednesday. I did super well in France, and even did well initially once I got back home, even though my infusion was 4 days late due to traveling. And then somehow, my immune system decided that it really didn’t want to work correctly, and I got a mild infection (which responded well to antibiotics, thank goodness), and I started not sleeping well, and………… Well, I just haven’t felt well for several days and I want to feel better. I want to be able to do stuff. Like go to the grocery store, and take my dog for a long walk. With my camera. I want to be able to find a gate in the fence. One without a lock. One that i can push open and go back out into the world, and be able to see the view without looking through a chain link fence. Even though the view through the fence is beautiful.