Warning: This is a post about a crisis—not an emergency—and its subject matter concerns living with an illness more than living with plants; but the conclusion will be that no matter what, if you live with an ongoing illness that causes crises (or whatever it is in your case), even when you are a wreck, and you don’t really care as much about your plants as you usually do (or whatever it is for you), that’s ok. So don’t let me—or this post of mine—get you down…I am doing just fine.
For some time I’ve been trying to locate and define the line I cross when illness makes my life so difficult that the subjects of gardening and plants cannot immediately resuscitate me. Then, suddenly last week—but maybe it wasn’t that unexpected–I found that line again, and Thud! I was knocked out fair and square by the indwelling opponent I hadn’t really been keeping an eye on recently.
Last week my larynx nearly closed and it was terrifying. Since it had happened in the past I knew what it was and what to do, but I was home alone and terrified. For many with Hereditary Angioedema, this is our worst nightmare and up until only recently, this is how many people died from this disease. What many physicians still do not understand is that this is not an allergic swelling and that what we actually need is not corticosteroids or antihistimines but instead, fresh frozen plasma, or sometimes even more expensive treatments.
That night I faced a difficult decision and worse still was that I was alone. I could stay home and use the old treatment of anabolic steroids, hoping that it would help my body produce more of the C1 complement factor I needed in my blood, or else I could run the risk that my own hospital might actually deny my treatment in the emergency room. Being without my handy advocate, I chose not to attempt to fight the system that evening, and overall, that made me really angry. No one should have to put off potentially lifesaving treatment because they don’t want to argue with an emergency room doctor. You heard me correctly, and yes, this probably does not make sense.
Luckily, the old anabolic treatment kind of worked. I stayed up all night just in case, making sure that the swelling didn’t worsen or spread. If it had, I was committed to calling 911, so I wasn’t being too unreasonable.
|Showy Milkweed, Asclepias speciosa. Garden booty from my recent road trip to California.|
This experience reminded me that I’ve not yet won the recognition of a diagnosis I’ve lived with for almost 10 years from my own medical insurer, and that’s solely due to the fact of its potential expense. I live knowing that I cannot get the help I need because the quality of my life does not matter as much as their Bottom Line. To say that this is a heavy weight to carry on my back is an understatement. Unbelievable still is that my interest in plants and gardens could paper over the indignity of the healthcare nightmare I am so sick of living.
Many other patients already qualify for brand new expensive treatments that our large advocacy group fought hard for, but as of right now, I still do not qualify. There are several Types of HAE and I have now fallen into the Type III category that’s not only a catchall, but it’s also the least understood group and is currently still more theoretical. So, I wait, and if a study comes up and they need me, I will go, but until then, on paper, my own insurer will not accept the diagnosis. Scientifically, statistically, mathematically, symptomatically, they will only treat me in an emergency room based upon the symptoms as they are observed. To treat me with plasma would open up the door to my petitioning and potentially suing them in order to get special new treatments. This is sick. It is a sick system.
Each year my doctor writes a new letter describing why I need a treatment and why her diagnosis does not fit their criteria. Going to your insurance company repeatedly to ask for help, while being repeatedly denied, is really quite humbling. Even though I am basically too sick to work full-time, I am not ill enough. If I could get treatment, I could actually have some kind of life again. Instead, I am told no, and then am instructed to stick with the old treatment until more research has been completed. I think this round I will dig deeper. I might even fight back.
At least last week I knew exactly what I have, and although it is mysterious, I was informed enough to understand what it was and I can now see how I’d created the perfect storm for a health crisis during my trip to California. When I returned home and noticed I was physically shaking a lot, I knew something was going to happen but I was hoping it wasn’t going to involve my throat.
In the past my doctors and I had discussed a way to try again with the committee and had created a plan to re-petition but it was a long shot. At that time, I gave up because I couldn’t take any more, but I am ready now—even if it means having to make myself sick again.
Last week’s experience was a tipping point in my life. Seeing massive old growth native Californian oak trees has inspired me to want to see more and I cannot do so unless I seek the medical attention I need to prevent attacks like the one I had. Walking around staring at plants in the wilderness felt more normal to me than anything I’ve felt in ages. For a time, I felt free.
|Safflower, Carthamus tinctorius. One of the blooms used in some arrangements I’ve been making this past week.|
Luckily, while everything else has recently been a struggle, I have somehow successfully kept up with a daily Ikebana post on the other blog. After weeks of arrangements, I am really satisfied with the piece “Trapped” because it beautifully showed how I was feeling. What it made me realize too was that I needed to write this post. What’s important right now is my own personal growth and rebuilding, the plants that have papered over my frustration can rest a bit, and I will tend to that garden I have inside, just as we all do, and what’s left of the garden and plants I’ve neglected this year can come along with me and we’ll go at it again. Differently.
I don’t want the plants to be papering over anything anymore.
The tide has turned. My weight has shifted. Breathe in. Breathe out. Breathe.
“My blog will always be primarily about gardening, and my love of seeds and growing
oddball ornamental plants from seed, but today, I wanted to write an illness post because
if if weren’t for my rare hereditary blood disease, I doubt I ever would have ended up
here and I would have been doing something else.”
|One of our hummingbirds striking its best Ikebana pose…|