Living Invisibly

  • Invisible Disabilities: immune disorders

    The immune system is often taken for granted. I don’t. Mine sucks. There are many ways to get a immune system that doesn’t work: primary and secondary. Secondary is when the immune deficiency is caused by something else, like anti rejection pills. Primary is when it’s just cause … just cause it doesn’t work well. There are 4 immunoglobulins. My body doesn’t like producing 2 out of the 4.

    I was born this way. I didn’t know it until I was in my late 30s. And it wasn’t even a recognized condition until the 1990s, so growing up even if someone had noticed my frequent bacterial infections — they wouldn’t have had a diagnosis to give me. Instead I was labeled a hypochondriac. I get replacement therapy for one of the 2 I’m deficient in. So yay for that. What I have is called CVID or common immunodeficiency.

    If you have an invisible disability story, please share! You are not alone.

    This is part of a personal essay series on life with invisible disabilities.

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  • Invisible Illness

    After a bunch of tests that came back negative, I have an appointment with my doctor today. This is the point where in the past I was told nothing was wrong with me with the implication that it was just in my head or I was seeking attention. I remember getting test after test for rheumatoid arthritis as a kid, but everything came back negative for that. This was a decade before CVID was recognized as a condition. One of the symptoms of CVID is joint pain. I also used to get seasonal bronchitis, a decade or so before cough variant asthma was recognized. In the back of my head, I’m wondering what this doc will say about my test results and what to do next. I hope that medicine has changed where the certainty of current knowledge doesn’t overshadow patient care. So my journey in differential diagnosis adventureland continues.

  • Differential Diagnosis Adventureland—the doldrums

    I look healthy, even without the filter I’m using (mostly so that I don’t have to put on eyeliner and then take it off). But, my health is not what it would seem to be. After getting my gallbladder tested (it’s normal), I now find myself lingering, nay, drifting in the doldrums of Differential Diagnosis Adventureland. I have a new medical person. She was very thorough. I’m changing some of my medical people who seemed to prescribe by coupon (does that mean kickbacks for him?🤔) and monitored my immune system only for the insurance company. According to a rabbit hole dive I did into some scientific journals, people who have CVID should have all infections tracked not just upper respiratory. He never asked me about colds or other infections. Hmmm. So I now have an appointment with a new immunologist. I can’t say that I’m not anxious that I’ll get the same noncare that I’ve gotten already. After a lifetime of being called a hypochondriac because my condition had not been officially recognized yet, I will admit that the night before my appointment with my new doc I will be sullen and anxious, expecting to be left alone in the doldrums. I hope I’m wrong.

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  • An immune deficient person’s take on the spread of the common cold and severe viruses

    On the day I decided to take my toddler to story time at the library, I was excited that he had progressed enough to be able-ish follow directions.  I knew that he’d lose his mind being around other kids his age. 

    We played for a while at the train table. Then we tried playing with the puppets and sharing a chair with another toddler, who wasn’t a fan of sharing space. So we offered her a chair. My son joyously squealed with delight because there were kids to play with and new grown ups to say hi to and babies we could gently poke their noses (like mommy does to him). Then we all gathered in the story time room for the story 

    If I didn’t know better, I’d think my son was working a party. He went up to everyone and waved hi and squealed and tried to play with everyone. He was running back and forth between families. All the while the librarian led the kids in songs and read stories. And then I heard it. 

    The sound of a child coughing with the gurgle cracking of a wet cough.  I sunk into the ground, knowing where this would go. My son would get sick. And I would get sick. This shouldn’t be that big of a deal, right? Kids get sick. If you’re a parent, you’re going to get sick. So it’d be unreasonable to be furious at the mom who thought it was okay to bring her sick child to story time at the library. For me, it’s a calculation in the probability that I’ll get bronchitis or pneumonia. 

    I don’t look like it, but my health kinda stinks. My immune system is crap. I’ll briefly explain a little about the immune system. There are four immunoglobulins, which are like the ammunition that white blood cells make to kill viruses and diseases. If you’re a medical doctor reading thing and I’ve got it wrong or there’s more too it, feel free to chime in. Anyway, these munitions, these immunoglobulins have specific tasks in specific areas of your body. They are called M, G, A, D, and E.  I’m deficient in the first three. 

    In my body, immunoglobulin M, which acts as the first defense for bacteria and virus infections, is below normal levels for me. There’s no drug or replacement therapy for that one. 

    The immunoglobulin G that takes over to kill the bacteria and viruses that IGM didn’t get  is on the low side of normal, but that’s only been the case for me since I started weekly infusions, which require needles being stuck into my stomach fat. 

    The immunoglobulin A that fights against stomach infections and respiratory infections is below normal. No pills. No infusions. 

    So the immunoglobulins that are supposed to protect me are not really there in my body. I do have some protection from getting bacterial infections you can get after being sick with a cold. (When you have a cold that “turns” into pneumonia, it’s actually two different infections). My lack of immunoglobulins doesn’t show up on my outside, so you’d never be able to tell that if you’ve got a cold I will get it.  Additionally when I get sick, it takes me longer to get better.

    I knew when my partner and I decided to get a kid that I would be sick a lot more and that I’d have no control over exposure to illnesses. I’m okay with that. I’m okay with kids being little incubators of diseases. They’re cute, and they don’t know that they should cover their mouths when they sneeze or cough, because they’re lil ones. 

    What I have less patience for is adults who don’t seem to remember that colds are spread by the spray from coughs and sneezes and don’t cover their mouths. Or when they don’t remember that their sick kid is still contagious if she has a wet cough.  Maybe I should have more patience, because maybe they don’t know that there are people who are immunodeficient, have family members who are elderly, or have relatives who are immunosuppressed because of other medical conditions. 

    It’s not part of American culture to wear a medical face mask if you’ve got a cold, like in Asia. I’ve only recently seen medical face masks available at medical facilities and clinics for people who have a cough and fever. I wore one when I went to get my cough checked out, after I got the library bug. The nurse said that since I didn’t have the flu that I didn’t have to wear the face mask, but he didn’t say whether I was still contagious or not.  That’s the part that remains curious to me. 

    Because of my immune disorder and because I have asthma, I have viral face masks (disposable and reusable) on hand the way that other people have band-aids on hand.  It’s just something that I keep around. I sometimes wear them when I travel, especially if there’s someone coughing within the vicinity of where I’m sitting on the plane.  I feel self-conscious, but it’s better than getting sick. With the current Coronavirus going around, I thought I’d refresh my stock of hand-sanitizer (I buy that stuff in bulk) and my face masks.  Well, I can’t because everyone else has bought all of them. Luckily, I have a good supply left of face masks. I did look up how to make DIY handsanitizer. It’s just rubbing alcohol and aloe gel. Apparently, no one else has thought to look that up yet, because those ingredients are still easy to get.

    The Coronavirus is scary.  It’s really scary for me. Not only because I’m in two risk groups (asthma and an impaired immune system), but more so that I have a toddler.  He’s cute, so I don’t want him to get sick. I’ve gotten used to the idea that if I got a severe infection that I’d end up in the hospital, mostly because it’s happened to me twice. The thought of my toddler ending up in the hospital — I don’t even want to think about it.

    The Coronavirus is sad as well.  There have been so many people who have gotten sick and suffered.  For the people who have died, that’s tragic for not only the person who has left us, but also for their loved ones.  My heart goes out to them.  

    I don’t think, though, that we should panic or be overly paranoid about this epidemic.  Fear shouldn’t drive how we respond during this emergency, nor after it. I do think that we should take time to think about how easily this virus has spread.  There was a time when soap wasn’t used to wash one’s hands. There was a time in the West when taking a bath was done sparingly. We have evolved as a world culture to wash our hands and use soap.  I think that we should also think about how we interact with each other when we are ill. Yes, a simple cold does help exercise the immune system for people with normal immune systems, but not everyone has a normal immune system.  I think that etiquette should change a bit. Not only cough or sneeze into your bent elbow, but warn people if you’re coming down with something. Perhaps carry masks with us like tissue, so that if we are sick and someone doesn’t want to be exposed to the viruses that we can wear a mask.  Or … I don’t know.

    But something has to change in the way that we live in community.  There are so many of us, and there is so much travel that a virus can spread so much easier than decades ago. What I’m going to do is take responsibility for my own health. If you see me wearing a mask, it’s not necessarily that I’m sick, but it may be that I just can’t afford a cold.

    Just food for thought.  What do you think?

    Proofread by Cassidy Reyne.

  • Self-Isolation in solidarity, we are stronger together

    Social distancing has changed everyone’s lives.  You may be feeling the strain of not being able to go about your life the way that you had.  Isolation feels lonely for so many.  Not having freedom to go and do the simple things feels constrictive.  Globally, we are feeling alone.  I’m sure that many of us are resentful of the pandemic and thinking could it really be that bad?    

    I am immune compromised.  I have Common Variable Immunodeficiency Disorder or CVID.  I’ve written about this before.  Essentially, my immune system doesn’t fight off infections as well as most people.  If you’ve got a cold, I’ll get it. Even if you cover your mouth when you cough, I’m still likely going to get it.  I have immune-replacement therapy, but it doesn’t cover everything.  There are many ways that our immune system fights off contagions and my replacement therapy only addresses one of those ways.  I also have asthma, so if it’s a respiratory thing it’ll cause an asthma flare up.  

    My immunodeficiency and asthma put me into two risk groups.  So, I’ve been anxious.  But, like many of you, I’ve been asking myself, could it really be that bad?  After my husband spoke with a friend of his from college who is an ER doctor, we had a reality check in our house.  We found out what it’s like on the frontline.  What COVID-19 looks like when it’s severe, and what medical procedures have to happen when it is severe.  To answer the question, yes, it is that bad.  

    All of the emotions that I had been trying to manage busted out, and I spent the next day crying in waves.  After a day of crying, I realized how much I had been fighting to hold it together.  I wasn’t just nervous.  I wasn’t just anxious.  I was full on scared. 

    My husband had been working furiously to be able to telework.  After talking with his friend, he decided to tell his supervisor that he would be taking vacation until he could telework.  My husband gave them a few day’s notice and spent extra hours at the office getting ready for it.  Although his supervisor and the IT department were supportive, the infrastructure was less so.  As of writing this my husband is on vacation and setting up his home office to be his workplace away from the office.  I’m relieved [update: the approval finally came through a few days ago]

    I had no idea how much I was stressing out until he came home.  Since he’s been home, I feel like a weight has been lifted from me, and realized  I was stressed because he kept going out into the world and putting our toddler and myself at risk.  It must’ve been a huge weight, because I’m feeling quite at peace at the moment.  The boredom, the ennui, the resentment hasn’t kicked in yet.  Don’t get me wrong, I’m NOT giddy about all of this. My once sole domain during the work week has been invaded.  But, I’m sure that we will work it out,  as many of us will.

    It’s hard to wrap your head around something so abstract as a pandemic, isn’t it?  People are trying to avoid spreading it, even though they might not have symptoms. People are staying home so that the severe cases don’t overwhelm the hospital system.  What does that even mean?  It means that we can expect a certain amount of people to become severe cases.  If the virus is allowed to spread, then more people will get the virus, which means that more people can become severe.  I think that we all understand that much.  I really do.  I think that we understand how “A” leads to “B” and then to “C”.  

    I think, really, what we are having trouble with is allowing ourselves to feel the vulnerability that comes with something as catastrophic as this.  Our world is being shaken to its core.  We are seeing how fragile our systems are, like our economy, availability of resources.  Having allowed ourselves to feel this, I think it’s also important to see the easily missed fact of how resilient we are as well.  Our systems are fragile but look at how quickly we were able to self-organize into self-isolation.  Look at how quickly we were able to set up ways to keep working at home.  Look at how quickly people got on social media to encourage each other to buy gift certificates from restaurants and other places of business that can’t be open during this time.  I don’t want to sound dismissive of those who are suffering from this pandemic, either because of their health or from economic burdens. They is a lot of very real suffering happening right now.  But, at the same time, I think this is a time to help your neighbor, to expand what your notion of neighbor is, and globally ban together to help each other.  This is WHY we are showing resilience.  We are resilient because we have realized and have decided to act on a feeling of solidarity, because we are stronger together.    

  • April Wrap up and May Preview

    April was the first full month of stay at home orders. Although I was self-isolating before, I was seeing increasingly the full impact of this pandemic. I wrote about self-isolating in my post: Self-Isolation in solidarity, we are stronger together. At the time that I wrote that post, the questions that I saw people asking were: is this pandemic really that bad? Over the past month, the answer is an unequivocal, yes. Places where there was loose or even no social isolating policies, infection rates were high. Now questions, at least in the US, seem to be around freedom. The freedom to do what we want versus our responsibility towards others. I’m not sure what I think about this, given my circumstances of having an immune disorder that leaves me particularly vulnerable to infection and having a severe response. 

    I can tell you how I feel. I feel even more scared. I feel distrustful of others, which is something I don’t like being. I don’t know how careful others are, which means I must be even more careful. Some may argue that others shouldn’t be inconvenienced for my sake. I agree. But that doesn’t make it less scary for me. I don’t see the Coronavirus as something that can make me sick. I see it as something that can kill me. That reality has sunk in even more for me. So how have I been coping? Some days not very well. Other days, I’m okay. The people in my immediate circle have been incredibly careful and supportive. For that I am grateful. Gratitude is a great analgesic to fear I am finding. So is work.

    April has also been the month where a project that I put on the back burner got placed on the front burner. Separating my marketing self from my writing self. I wrote about this in Embracing change: announcement about this blog. I was involved with some projects where my expertise in marketing was not apparent and needed to be. I had known that I needed to separate the two activities, because the branding was becoming muddled, but it really came to a head this month. So, I had to drop a bunch of projects to switch gears and quickly get things going to start my new brand. I had to file a doing business as, set up a website, set up the mailing list, etc. It’s been a lot of work and a lot of time. Time that I had planned to use to resurrect a writing project from 20-25 years ago. It’s been worth it though. The writing project isn’t going anywhere, and I finally got something done that I had been putting off. That always feels good.

    I’ve still been working on the resurrecting my Lazarus project, not the real name of course. I wrote about this in Unearthing an old project for Camp NaNoWriMo. Since I’m reworking the backstory to this sci-fi series, I’m finding that although I did do a lot of work on it that I still have a lot more work to do. I have a better understanding of world building than I did decades ago. I’m also a different person than I was. I still have the questions that I did so many years ago that inspired the exploration of those questions in the trilogy, but my thought process has changed over those decades. My perspective. My worldview has become more nuanced. Consequently, how I’m going to answer those questions is going to be much different. The world is also going to have a slightly darker feel, because of my change in perspective. I was naïve in my idealism when I was in my 20s. My idealism hasn’t changed that much. I still would love to see a world of peace and harmony, but my naiveite has been tempered over the years. I do want to jump back into that world though, and despite my furious efforts separating my brands, I still worked on the world building. I won’t reach my goal, but at least, I kept working on it.

    This brings me to my plans for May. I have a new client for my marketing business. Me. I’ve finally decided to make myself a priority in that arena. I don’t know why I haven’t made myself a priority for it until now. I may write about it. We shall see. But in the month of May, I’m going to be searching for a balance between my fiction writing and my marketing business, while at the same time taking my own advice in marketing to organize and formalize my content creation systems. So, I’ll be working on my marketing efforts, which will be challenging because by making myself a client, I’ve really gained two more clients.

    One of the marketing tactics that I use is community building, which is something that I’ve been doing a lot of for yet another hat I wear: founder and leader of the World Indie Warriors. Right now, we are moving towards being able to file for nonprofit status in the late summer or fall. The purpose of the community is to help expand the stage of diverse voices by supporting indie creatives. Inclusion and diversity is a social justice issue that I feel very passionately about. This is a passion project that I’m trying to set up to be sustainable. I want to see diverse voices shine.

    My month of May looks to be a very busy one, but one where I hope that I can find a sense of balance. I don’t want to be sped-up in the pursuit of getting things done. I like trying to keep a more mindful approach to my life. I don’t often live up to that ideal, but it’s an ideal that I do have. 

    Happy writing.

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