Zebra's Child

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

Glorious Autumn

img_2297

Hello Everyone,

It’s been six months since I’ve posted, and I’ve been reluctant to dive back in because I haven’t known how regularly I’d be able to post. The process of getting our house ready to sell with repairs and what-not, drastically downsizing, deciding on the small number of things to keep, then donating/selling/giving away 90% of our possessions, actually putting our house on the market, then packing, and moving 500 miles into a small apartment in a retirement community dug me into an exhaustion hole so deep that it took me two months of sleeping almost non-stop before I felt half way human again.

But here we are, my husband and I, relocated, happy, and mostly sorted. Although there are still a sizable number of boxes on the balcony yet to be unpacked, and some disorder within the apartment that we are trying to contend with. I do still have some intense periods of grief over the people and places I left behind, but as I make new friends and put down some fledgling roots here, the intensity of the grief lessens. And our lives here are so much easier. We no longer have the responsibility of the upkeep of a house, and are no longer completely responsible for all grocery shopping and meal preparation. We are 5 minutes away from our medical care, rather than the hour of driving required each way in Los Angeles traffic, and we are now living in a geographically compact city in which most things that we need are within walking distance.

Add to that the fact that the air is significantly cleaner, and the weather noticeably cooler, and I find that I am incredibly grateful that I am no longer living in the smoggy intense heat in which I had to walk the dog before 8am and after 8pm in order not to make the two of us ill.

And here in Northern California, the fall rains have already arrived. We had a glorious weekend of two storms sweeping in with a much needed steady rain that was able to soak into the earth. I covered the boxes on the balcony with tarps, and then opened the sliding glass doors in the living room and bedroom (our only two rooms) so I could more fully take in the wonder of water falling into our drought parched earth.

How have all of you been these past six months?

xoxo,
Hannah

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?

Grief

IMG_2446

Arlington National Cemetery, Arlington, Virginia

I have returned home from burying my mom in Arlington National Cemetery in Virginia. For those readers outside the US, Arlington is our national cemetery for soldiers (and their spouses) who have died while on active duty or are fully retired from 20+ years of active service. It has been 6 months since her death, but things take awhile with Arlington. The last 6 months have been difficult for layers upon layers of reasons, with no time, energy, or emotional reserve to write. Our lives have been a swirl of emotions and change, for reasons in addition to my mother’s death. I’ll have to unpack all of it bit by bit, though I don’t know how much of it I will do publicly. The trick as a writer is to write from your heart without giving away too many pieces of yourself. Always a tricky balancing act.

What I can say now is that it has been years since I have been to Arlington, and I arrived with certain expectations. I expected Arlington to be full of sorrow, much as the US Military Cemetery of World War II was in Normandy, France, which we visited last year. I also expected my mom’s burial to be wrenching, because the anticipation of it had opened up fresh grief. What I found instead was that Arlington is actually a very comforting place. Perhaps that is because my grandparents are also buried there, as are some of my husband’s family. It feels familiar, even though much time has past since I last have been there.

Perhaps the difference also lies in the fact that that all the soldiers buried in Normandy were cut down in the prime of their lives. So many of them were 18, 19, 24 years old, with their whole lives ahead of them. In France one feels the death of dreams amidst the knowledge of the bravery and sacrifice. It is a place to be reverent, a place to be grateful. But it is also a place of regret and deep sorrow. And while Arlington does indeed have graves of soldiers who have died in war, the majority of the graves are of those who have lived full lives and have died after they have retired from active service. Most of those buried in Arlington lived to an age where they were able to look back on a long life and remember days fully lived. I know my mom was ready to let go of pain and the struggle of her failing body, and that also brings comfort. But make no mistake, grief is a long road, and is not easy, even when your loved one was ready to meet death.

 

 

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.

New Life

© Zebra's Child

                                              © Zebra’s Child

My husband and I just returned from spending a week with one of our daughters, her husband, our almost-3-year-old grandson and our brand new baby granddaughter. We rented a vacation flat that was close by, as there certainly wasn’t room in their small house for two more adults. That also enabled both us and them to have some privacy and to somewhat keep our regular schedules. We are no longer used to waking up in the middle of the night with a crying baby, nor getting up at the crack of dawn with a happily active pre-schooler. So renting a vacation flat worked out brilliantly for all of us.

We were there to meet the new little one, participate in her Naming ceremony, read stories and play with the almost-3-year-old, and generally help out. As my English Aunt has said to me, “Isn’t being a Grammy grand!” It is indeed.

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.

Let Us Not Forget

IMG_1212

Les cierge votives dans L’église de la Madeleine, Paris, France     ©Zebra’s Child

I have more posts in my head about the Charleston mass shooting, but I am finding them difficult and painful to write. Many of my thoughts are tangled and sorting through those tangles is taking time.

But at the moment I want to call attention to the fact that we need to honor two sets of victims of the mass shooting at Emanuel African Methodist Episcopal Church in Charleston, South Carolina: those who were murdered and those who survived.

We are good at remembering the dead. That is in part because of the horror we feel when we think about how nine innocent people were gunned down in a place of worship simply because they were black. We are also good at remembering the dead because we think the dead no longer require anything of us. Few things could be farther from the truth, but that is the subject of another post.

We are not so good at remembering the living. We have seen pictures  of those who died, and have both read and heard their names many time. That makes it easier to think of them as individuals. Remembering the survivors of the mass shooting at Emanuel AME Church is more difficult. To begin with, most of us don’t even know, or can’t remember, how many survivors there were. I certainly didn’t. I had to look it up. According to the Wikipedia article, 4 other people were in the same room. Three were uninjured. The fourth was injured but survived. Unlike those who died, we have not seen these names listed multiple times, nor have we seen their pictures. This is as it should be. Their privacy should be both respected and honored. But it does make it harder for us to remember them as people. Harder to remember that they were each witnesses to something that no person should ever have to see or experience: the sight of friends and loved ones being gunned down at close range, and the horror of wondering if they were going to be the next to be killed. That is an experience they will have to live with for the rest of their lives. An experience that typically produces feelings of intense relief that their lives were spared, and also feelings of guilt that they are still alive and others are not.

We need to remember those four survivors, as well as Rev. Pinckney’s wife and daughter who were present in another room of the church during the shooting. It is harder to remember the survivors, but we must. We must continue to hold them in our thoughts and prayers because they have had unspeakable violence perpetrated against them as well. We need to continue to remember the living as well as the dead, and work harder than we have ever worked to reduce the racial hatred and violence that exists in our country. We need to learn to recognize ourselves in each other, no matter the color of our skin, so that terrorist acts against those who are different do not continue to repeat themselves. We need to do all of this not only to honor the dead, but to honor and remember the living.

Industrial Water #2

©Zebra's Child

                                           ©Zebra’s Child

Photo taken in Pasadena, California, 08/06/2015.

Eastern Building

Entrance          ©Zebra's Child

Entrance, Eastern Building               ©Zebra’s Child

Historic Art Deco, Eastern Columbia Building Entrance,  849 S. Broadway, Los Angeles, California.