Thoughts on My Own Personal Garden Therapy Program and Treatment Plan During Crisis

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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.
Mt. Konocti as seen from Walker Ridge Road in Lake County, CA. If I hadn’t walked up that peak on the left, I probably wouldn’t be here writing this post right now. Do I regret the steep walk uphill? Uhm, HELL NO! I already want to do it again, but with better attention paid to the additional necessary precautions in order to prevent more heath scares.
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…

Ah Swell, Seed Starting is Upon Us

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Our Camellia sasanqua ‘Yuletide’ is here with its annual flush of color and we have several Hellebores blooming too. This means that is time to get ready for our annual pilgrimage to Seattle in February for the Northwest Flower & Garden Show. I am hoping this year my husband and I will have more fun than ever, but we just never know since my chronic illness—a mysterious malady—can make me miserable quite quickly.

As I sit and drink my special tea, the one I only drink when I need to feel the warm embrace of my Parisian friends and the happiness of what brought my husband and I together, I only do so as if to hold a warm security blanket. I say this because January has been a really difficult month of me, oh, and if you’d like to know the tea, its Mariage Frères “Pleine Lune.”

Despite the ongoing pain from continual swelling, and the fear of having a swollen neck that can make it difficult to swallow, and sometimes breathe, I have continued to keep my hands and my mind occupied with garden-like crafts. Sales of my online boutique shops have continued, and the kids have kept coming. What I have learned from being sick like this off and on now for 10 years is that you have to simply keep going. Doing this is so hard at times because on the other hand you must learn to let other things slide. For a Virgo perfectionist like me, this has been heartbreaking and it is my real daily struggle.

I’d wanted to have had these finished a few months ago, but they are finished now and I am really happy to have made them. This is the only complete accordion seed book so far, but I learned a great deal from making it. It looks really nice too and I am so pleased with it.

These origami boxes are for seed collections too. I made these while watching a 007 movie marathon a few weeks ago. I’d wanted to roll up seed tapes in them but when the seeds were applied to the paper strips, they were simply too big. Guess I need larger origami paper!

Lastly, these are large stakes I’ve painted with chalkboard paint. I am not sure if I would use them outside since the chalk comes off with water so easily, but nevertheless, they look really cute. I highly recommend making some of these if you have any kind of garden themed party this upcoming season. You can get the paint at craft stores in all kinds of crazy colors. Folks also plant planters with the stuff, and I have some I’ve been making too, but for some reason I am thinking that the pots will chip off. We’ll see and I’ll let you know.

So January has been a rough time, but I have completed some goals, despite having to neglect some others. Never giving in, and never giving up can really wear a person down and I am so concerned that this year my seed starting will end up like last year’s. Many of the seedlings didn’t make it because I was too wrapped up in being a new foster respite provider. This year I will really need to find the balance between my needs and those of the kids.

The last year has taught me much about empathy. I empathize too much with everyone and it is really draining. Some of us are just very empathetic and although it is a skill set, it must be used responsibly.

The kids in therapeutic foster care often have little empathy for others because of what they have experienced in their lives. This is a huge challenge for many of them. Some will learn to trust others enough again in the future to really open up and feel what others feel, but others will not. My job is to be a good role model, and not to over empathize with them. I need to teach them skills and help their confidence. This is how gardening fits into the big picture and this is truly my New Year’s Resolution.

With that, we begin the seed starting season: Gardening Skills 101.

If you would like to see the list of seeds I’m starting this year, please visit the tab that reads Seed Starting 2001 to the right of the HOME button above this post.

Out of my Illness Ill-nest

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Whenever summer comes around I get excited, but then I have to remember, summer is my garden’s best season, but it is not always mine. It takes longer for me to recover from a swelling, and there is simply more to do, so that means an additional chunk of time taken from my life that I hadn’t planned to lose in the first place. To add to this irritation, this past weekend there was a one-day conference here in Portland concerning Hereditary Angioedema, its three types, and what treatment options are available for all of them. We left with the realization that my Type III HAE is really as crazy and as unpredictable as it feels, we were told there is no treatment anywhere on the horizon for me, but to help that process along, I gave them blood and DNA samples so I understand now that it’s all out there for the right researcher to investigate and that’s kind of exciting. So, with that in order, it’s back to work.

My Egyptian walking onions are all ready to walk out on me. Maybe being surrounded by the jungle that is our garden right now has inspired them to take the walk they need in order to get better spacing for next year. I hate to anthropomorphize, but this little army of onions really cracks me up. Luckily, every single part of them tastes great too. 

I have also finally started to break open the Christmas houseplant terrariums I’d planted to help those plants continue on their journey. The heart I found at a thrift store recently and since I love topiary so much I stuffed it and planted some baby’s tears in it. With all of the rain we’ve been having, this should do well this year. 

Here is the lovely Julia Child rose. We all need to have golden butter colored roses, right? I only have this one, but it is more than enough. 
Lastly, here are two of the three black cats (Mona in the foreground, Maurice in back). And with that, I’m back on my horse, and off to garden at my employers’. 

Beautiful Days Ahead

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After an 1,800-mile car trip to California and back, there just isn’t a lot of energy left in me. We arrived home almost 4 days ago, and yet, I just cannot recover. Sitting in the car is difficult enough for me, but taking two teenaged girls was a whole other issue. (One was a niece, the other is like a niece.) At least I was able to see some amazing landscapes, and my husband was dropped-off in Lake County so that he could help in the annual wine-making process at his dad’s. The smoke from the wildfires was giving us all headaches, but the trip back with the girls along the coast was very pleasant. I just worry about the drought now. The grapes looked great, but they did need to be pruned, and I think they took care of that after we left. I wish I could have helped, but again, I just don’t have that kind of stamina or the speed either.
Today I have been in a great deal of pain. It is centered around my limbs but I am feeling better bit by bit. For the last few days I have been shaky but that seems to have improved too. I just wish that I could get outside to arrange, plant, and sell the plants that need to be sold right now. My “inventory” is a bit out of control. At least if things died while we were away they can be composted. That always makes me feel better. Maybe tomorrow I will feel stronger.

Swelling Disease

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I really don’t like putting this photo up, even though it isn’t the worst swollen foot experience I have ever had, it’s just that I have to do this. Most people have no idea what hereditary angioedema even is, let alone what it can do, and this is just the tip of the iceberg that sank my battleship. Basically, any part of my body can swell for no real good reason other than it is being used too much. That’s because I am missing the protein in my blood that repairs swelling. My hands and feet are the worst, followed by my intestines. I also react as though I have allergies and for some unknown reason I am the only person I have ever met who can say that decongestants lower my blood pressure. In addition to those, I take twice the recommended daily allowance of antihistamines and then a whole lot of other things. Maybe this can explain some of the disability problems and why it’s strange I like to garden when it can actually hurt me a great deal.

Sore Throat Update

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I cannot believe that I haven’t posted anything in several months. My sore throat led to a skin rash, then to a skin biopsy, and eventually I had a late case of the flu. What a pain this has all been! The skin rash was an allergic version of eczema, not a huge surprise since my dad has a horrible time with his, but mine was very different looking and it was treated. (Thank God!) As for the other issues, I am currently going through a large number of tests to discover the cause of the horrible pain and swelling in my feet and hands. It isn’t connected to my hereditary angioedema or my hereditary primary hypertension. I dread to say this, but if diagnosed, the things on the list are just like many other problems. There is no cure and really no great treatment. As for me I have been depressed, full of anxiety, and unable to garden much. I will keep my chin up though. The purple lilac across the street is in bloom and the color is amazing.

Writing about Illness through Plants

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Who knew that you could just throw this stuff out there into the world? For years I have called myself a writer that doesn’t write and I suppose that’s simply because I have been very, very ill. Concentration isn’t one of my strong points now, unless I am in a grocery store line trying not to collapse, but on the whole, I no longer read ten books at once like I used to not too long ago. When I was diagnosed first with hereditary angioedema, a blood disease with no decent treatment, that was when I knew that life would change. Now that I have many other medical problems and medical mysteries that go with them, the only sure thing I can count on, and do, is my garden and the seed germination that occurs all winter long in my basement. I will never be able to have children, and that if fine with me, because somehow growing plants all winter long fills something inside of me in a way that nothing else can. I don’t want to use the word faith lightly, but the cycle that goes on now year after year in my basement under some cheap florescent tube lights and a shelf made out of scraps really brightens my days. My hope is that I will be able to write about all of this and not necessarily about the constant pains and worries. Writing was always a dream of mine, but I never would have guessed that so much illness would have brought me back to it. I suppose though, that it is my love of the natural world more than anything that brings me here and it is the thing that brightens the path I am on.