Zebra's Child

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

Category: Living With CVID

Tidal Waves

My husband and I are in the midst of a multitude of changes in our lives. Not little changes like the new, clean bedroom carpet we installed to replace the 15 year old one that bore the brunt of many accidents our puppy had when she was new. No, I’m talking about huge, sea changes. The tidal waves. The ones that smash into to you and pull you under and leave you desperately struggling toward the surface, hoping that you can reach the air before you lose consciousness and your lungs fill with water. The events in life that you survive, but leave you forever changed.

Due to various medical conditions each of us has (in my case, CVID), each of us are exhibiting symptoms and illness that are more typical of someone 10-15 years older than we each are. Admittedly, our children are in their 30’s, and it’s true that we would no longer be considered young, but we’re not considered old either. We in fact know several people 15 – 20 years older than we are who are in far better health. Certainly each decade of aging after age 40 or so leaves your health and physical strength a little diminished. But it is especially hard when it catches you unaware because what is happening to your body shouldn’t be happening for at least another 10 years. The poor balance that causes falls. The eyesight that’s no longer clear. The job loss due to poor health, the surgery that didn’t go well, the occasional inability to make it to the market when you need food, the necessity of caring for an injured partner when you yourself are ill.

So many things that taken individually seem small in and of themselves, and indeed might be if they were happening to only one of you, but they are things that become insurmountable when when added together between you both. They start out happening here and there, but then one day you realize that some of the simplest tasks of daily living have consistently become amazingly difficult. You go on with the business of living as best you can, but there are empty spaces that used to be filled, and you realize that you didn’t fully notice the common things. The little things that bring glory to everyday and you don’t notice that they are there and a glorious until one day they’re not. Then you realize that you didn’t say goodbye properly, or whisper “thank you” often enough for the blessed ordinariness of each moment.

And then with one thing and another, and all those ordinary things that you that you took for granted but can no longer reliably do, you one day realize that you have to give up things that you deeply love and can’t image living without. You start by changing the little things, the things that won’t cause you huge amounts of grief. You give away a single large piece of furniture that was causing one of you to trip and fall, and you hope and pray that that will be enough. Enough to enable the two of you to go on with life in the new normal. Then you find that you have to make another change, and then another. And gradually you realize that none of these little changes are going to be enough, and you are going to have to change major portions of your life. You think you can’t possibly, but you do. You do because you have to. But it hurts. It hurts when both of you age before your time. All you want is your old life back, and things to be as they were. But there comes a time when you know that they never will be. And what do you do then? How do you navigate through a series of decisions that you know are going to cause you such pain in the process of letting go?

Difficult Times

No picture today, and I know I haven’t posted in a very long time. We have had one death and burial in the family and are headed toward another one. My mom entered hospice a week and a half ago and is now in her final days. She is elderly and is at peace with her decision, but that still doesn’t make this journey easy. Please keep us all in your thoughts.

Snarls

Snarls © Zebra's Child

Snarls                   © Zebra’s Child

Hi Guys,

I know I haven’t been posting at all regularly, but I still can’t seem to get my pain levels consistently under control. I’ll have a few good-ish days and then, wham! The pain levels go up again. I can function and do what I need to do, which is what keeps me from going into the ER. I reserve that trip for times I truly can’t function. But the pain leaves me with little energy or interest in doing anything extra. I usually love to write, but there seems to be a lot going on that requires planning and decisions, added to tons of medical appointments. We’ve been back from the wonderful visit with one of our daughters, son-in-law, small grandson and very new granddaughter for 11 days, and for the first 8 days I commuted back and forth to Kaiser for five of those days. I say commuted because I have to allow at least an hour of commute time each way.  Sometimes the one way trip takes 30 minutes. Sometimes it takes 2 hours. What can I say? It’s LA. The trip all depends on the time of day, whether there’s been an accident, or there’s road work going on with a lane closed, or sometimes, I don’t know……….. the traffic simply seems to bunch up and then mysteriously clear. The physicists have a name for this phenomenon. I just call it unpleasantness. Luckily, for most of my appointments I need a driver, so I at least have a friend to talk to along the way.

The picture of the tree above looks a lot like part of me feels: caught in a seemingly endless snarl of traffic that is likely to be pretty similar today, tomorrow and the next day as I trace my way back and forth and back and forth to doctor’s appointments and hospital procedures. It also looks like the snarl of pain in my head that makes it difficult to see the green grass and pretty berries among the twisted tree roots. The roots are, after all, just trying to get a hold of a patch of earth that will support and nourish the tree as it tries to grow and even flourish, caught as it is between a sidewalk and a road, without enough real room to spread out. Add to that the fact that it’s watered only on the surface by timed sprinklers, rather than fed long, nourishing drinks of water that would encourage the roots to grow down, rather than sideways. It is doing the best it can, the tree. As are we all.

Infusion After Effects

©Zebra's Child

                                                                                    ©Zebra’s Child

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.

Turtle Speed

Flowers by the Roadside

Flowers by the Roadside                  ©Zebra’s Child

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.

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
🐪🐪🐪🐪

Birthday Irises

Birthday Irises         ©Zebra's Child

                               Birthday Irises                        ©Zebra’s Child

I woke up this morning and discovered that the irises I bought yesterday had opened. Already the day had started out a little more hopefully than yesterday. I’m here on the infusion unit, my head still hurts like crazy, and my immune system still isn’t happy, but I get to go home to beautiful irises.

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.