Monthly Archives: July 2014

“Understanding Arachnoiditis: Please Hear Me” ~Dawn M. G.

People sometimes just don’t get that yes I make sacrifices daily to live and do things but will pay for it greatly. And that normally causes me to crash and have a few days rest. Yes when I push I can do something I really set my mind to but it comes with a price. When I say no, I can’t do that, yes, I may have done it in the past, but i paid for it dearly! And it’s not that I don’t want to, it’s just that I realize my limits and capabilities.

Yes, it seems like I always do try and do the fun stuff, but don’t push myself as hard to do things I don’t find as important as making memories and living an enjoyable life. And yes I say no to stuff that is normally everyday stuff because I’m usually paying for just trying to be there to have somewhat of a life. It just doesn’t seem to make the connection there. This is when the Spoon Theory comes in handy. But some people just don’t listen no matter how many times you tell them, and won’t take the time to read and understand.

Yes, I do have new explanations for symptoms and pains, because yes, I am always learning new stuff about why I get this pain, this symptom, why I should avoid this because it leads to that, I need to do this now because it can cause that, and I do this now or don’t do that because it’s happened in the past and I’ve learned my lesson, and no I have absolutely no idea about the future. I live in the moment. I have absolutely no choice.

Yes I’m having to learn how to do things differently, and I’m learning constantly my cans and cant’s. Yes my moods change frequently because I can feel a little better today than yesterday, which made me feel like I accomplished something, but tomorrow I’m going to be cranky and depressed because I’m going to be feeling absolutely awful from doing the smallest things, and yes I’ll be full of emotions because it makes me realize just how much my life has changed.

Yes sometimes my mind is occupied so I forget about what tomorrow will bring but the same thoughts might scare the living crap out of me tomorrow because I’ve actually had time to be in my head for a while and face whatever tomorrow may bring.

Yes all of this does exhaust me, confuse me, depress me, frighten me, and no I really don’t understand things any better than you do. Yes you do hurt my feelings when you scoff at me thinking I can do something in the future that I wasn’t able to do yesterday, and can’t even get out of bed today.

Sometimes you just don’t realize that sitting and resting like a “normal” is actually really hard work and takes spoons just as much as walking or trying to do something. Yes, I will need to lay down and rest just as much from sitting and doing “nothing” than I would walking and trying to do “something” , and sometimes it will actually take sleep to recover and I will be absolutely wiped out the next day from doing a lot of it. Sitting and watching a movie feels like I’ve just run a 5k.

And yes spoons aren’t automatically replenished in the morning. You have to earn them back by resting. Some days you only earn back 3 spoons. And finally no, I didn’t ask to be this way, no I don’t like it, yes if I had to choose I wouldn’t do this over again, and yes, I will try to make the absolute best of things that I can.

-Dawn Marie G-

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Downsizing to Bonzai

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[First Maple 2008]

I have always been sort of a nature nut. Long walks in the woods and along country roads and growing foods and flowers have been a source of great joy and peace for the majority of my life.

Although I made extreme efforts to continue gardening in my Sherman Street Garden after arachnoiditis, eventually, it became evident that I would have to reduce the scale of my ambitions. In 2008 I was searching for a hobby for my father who was recovering from surgery. I came across a book in the library that was all about using Native Indigenous trees as Bonzai trees.  Although my father browsed through the book, it wasn’t really something that interested. He had every intention of resuming all of his usual hobbies and activities.

For me, this was a wonderful lead in to an artistic gardening strategy that did not demand too much from my body but gave some relief for the stress  and frustration of my arachnoiditis-burdened mind.

A short early spring stroll around the boundaries of my yard revealed numerous seedlings. I selected three maples and three pines. With a small gardening shovel I loosened them from the soil and put them in small pots to move closer to the house. Sheltered on the side of the garage, this was all that I had to do for the first season.

In the fall, I trimmed the tap roots (maples) back and placed a small flat stone under the roots of all of the tiny trees. I returned them to the soil and watered them. The flat rock underneath helps the roots to spread and keeps them from getting too wet. Trimming the tap root helps to stunt the growth of the tree. Although I did have some guilt about “stunting” anything on purpose at that time, this feeling eased with the knowledge that I was cultivating a companion which would otherwise have been eliminated due to its location related to the established foliage around the yard.

Every spring and fall I repeated these steps and mulched them heavily to protect them from the hardships of winter in upstate NY. The first year I used fallen leaves as mulch. The second, I used leftover mulch from my neglected flowerbeds. When I left my large three story house for a more manageable property near my pain clinic, it was not difficult to bring these potted trees with me.

OLYMPUS DIGITAL CAMERA[Same Maple, age 4 years]

Moving Day
Moving Day

OLYMPUS DIGITAL CAMERA [same maple, Spring 2014]

I have since collected other samples to add to my Bonzai garden. Each spring I trim the new leaves and branches to create a shape and form that I find aesthetically pleasing. I do make an effort to mimic the natural shape of the larger version of each type of tree but, sometimes, the artist in me sees something different.

I now have the original maples and an assortment of evergreens and two oaks that I found on brief walks in the woods. I have a small map of each new tree, type, and the date it was found and transplanted. Although I haven’t read anything to confirm it, I believe it is best not to do anything to the roots or “branches” of the oaks until the second year. For all of the samples, it is best to trim and shape new growth while it is still green to minimize the scarring on the surface of the tree. These trees are quite resilient and these markings heal over fairly quickly when done correctly. The trimming process helps to stimulate new growth of small leaves. Trimming the roots also helps to keep the size of the leaf in proportion with the size of the tree. Otherwise, the natural-sized leaf will appear and seems ginormous in comparison to the rest of the tree.

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OLYMPUS DIGITAL CAMERAWhen I have the ability and opportunity to spend time in nature, small rocks and stones seem to find their way into my pockets. Overtime, I have added these and some moss from the yard into my Bonzai garden. All of the indigenous trees in the garden still show seasonal changes. As fall temperatures drop and the pain in my body increases, I can simply sit on my back step and enjoy the vibrant reds and oranges of my mini maple trees.