The other day, I heard a disturbance outside of my window. When I looked up, I saw a mixture of snow fall and feathers. It seems that the resident Sharp-shinned hawk nabbed itself a meal from my feeding station.
I have been off of the antimalarial drug, Plaquenil/hydroxycloroquine, for just over a month now. I’ve had a lot of improvement with regards to weakness and pain. The skin lesions, in the form of discolored scales, that I felt sure were due to the drug are now disappearing. Huh. Imagine that!
I am a pretty chill person; I’m not easily angered. Sometimes, however, I will end up thinking about bad experiences that I’ve had with healthcare professionals over the years.
One doctor was so certain that I was dealing with depression that she dared to suggest electroconvulsive therapy (ECT). I saw a specialist who told me that the only possible cause of my painful neck was stress. Just before being diagnosed with Sjögren’s Syndrome, another doctor told me that he thought depression was the cause of all my problems. When I asked him how he came to that conclusion, he said that it was because I insisted that something was wrong with although the doctors hadn’t found anything. As recently as December, after bringing it up for three years, my old rheumatologist denied that Plaquenil could make me feel worse.
They were all wrong.
I’m not yet sure how to deal with these situations that have occurred over the years. I feel compelled to tell all of these physicians of their mistakes, to point out their insensitivity and carelessness, to help them be better prepared for the next patient like me.
I assume that is uncouth and so I haven’t done it. Instead, every few months, I gnash my teeth for just a little bit.
I love Mondays and Tuesdays, which is when I do a bird count at my feeding station for Project FeederWatch. I have fed birds all of my life, but it wasn’t until joining a local birding group on Facebook that I tried to lure in specific species, including Baltimore 0rioles in the spring (they love grape jelly and orange halves) and Red-bellied woodpeckers this winter. I tally the birds that come to a specific corner of my yard and record the conditions. I also have a phenology calendar from the Aldo Leopold Foundation, and in that I track seasonal events, such as the start of the Black-capped chickadees’ two-note song or the Blue jays gurgling and head bobbing.
Most of my blood work has come back negative, I’m glad to report. The biggest thing to happen healthwise is that I convinced my new rheumatologist to let me go off of Plaquenil, which is the standard treatment for Sjögren’s Syndrome and some other autoimmune disorders, like lupus and rheumatoid arthritis. While many people have a noticeable improvement, I experienced three years of progressive weakness. Although I’ve only been off of it for a week, I feel loads lighter. Before that, it was as if I was always dragging around sandbags. My limbs were so heavy. While it’s too early to make any conclusions, I have a feeling that I did the right thing.
More and happier updates soon!
I never expected to go two years without writing here.
Things with my health kind of got away from me, although I feel like I haven’t done a whole lot more than take care of myself during that time. Since being diagnosed with Sjögren’s Syndrome over three years ago, after having it almost 20 years, I went downhill. Additionally, I had an ass of a rheumatologist who wouldn’t really discuss my illness or listen to me regarding new symptoms. I saw a new doctor on Monday and brought along my brain MRI from 2009. It showed at least 13 lesions, mostly in the white matter, but also in the corpus callosum, which is some pretty tough material for a lesion to infiltrate. So, get this… No one ever followed up on that MRI. These findings could be associated with Sjögren’s Syndrome or they could be evidence of some further demyelinating disease. I’ll be getting another scan at some point in the near future to see if things have progressed or not.
Additionally, I have an enlarged spleen and a mass on my neck. It is all so overwhelming that I can hardly think about it.
Other than that, life is really lovely. The year 2014 was very nice. We had a great big garden; I ate Mexico Midgets every morning for three months. Then, I got really into backyard birding. While I’ve always kept a bird feeder or two, it wasn’t until recently that I began to attract specific birds on purpose. It’s fun and more than a little addictive. I’ve volunteered as an archivist at the local historical society for almost three years and I really enjoy that. My grandma is 91 and able to live at home, so I also care for her most days. My husband and my daughter are my world. I love them so much.
I just hope that everything is okay. I am very scared.
This juvenile Yellow-bellied sapsucker is out of its range here in my yard this January of 2015. It has been hanging about since late October.
It has been a long time since I’ve published anything here, until now. Look for more updates soon!
I have spent much of the weekend mulling over exactly how I’m supposed to plan for anything. It only occurred to me just now that maybe… I shouldn’t. For me, this is a novel idea. I enjoy challenges, especially the ones that I create for myself. I like to make plans and schedules, flexible lists, and I just love the feeling of accomplishment that comes from completing tasks.
The first few days of Apartment Therapy’s January Cure went along nicely. Easy-schmeasy. Then, one of the jobs for the weekend, the most important one really, was to clean all of the floors and vacuum any carpeting. Honestly, I didn’t have the energy or strength (and even on a good day I don’t generally have the where-with-all to take on such a heavy duty). While I could hate that this remains undone, the truth is that there isn’t anything that I can do to remedy it right now. My husband has offered to do that part for me, or at least the brunt of it, sometime when he isn’t working. I shall certainly take him up on that this next weekend.
What I am left to think about is how to apply this to my life so that I don’t set myself up for disappointment. This applies to so many areas… taking care of myself, keeping house, creative work (writing, crafting, DIY stuff), time with family and friends, volunteering, and general planning for the future. I would like to add working (for money) to that list, but that is so beyond feasible at this point in time. For the past 15 years, there has been a growing pattern of making plans and then having to cancel them. With that, there is the potential for a lot of stress and disappointment. Additionally, I’m sure that it affects the other parties involved, especially when they don’t know of or understand my illness because, realistically, I can’t explain it to every Tom, Dick, and Harry. And so, I need to rethink how to handle these varied situations in ways that don’t distress me emotionally or physically.
I feel like I’m trying to stand on my head and just can’t quite get there. The balance. The steadiness. The belief that I can do it. I need them all to figuratively do a head stand and I need them to help me navigate life’s expectations and necessities. I need to let go of the fear that I’m going to fall over, because I’m going to fall over again and again. THAT IS OKAY.
All in all, I am finding my way with the circumstances that I have and giving myself permission to do so is the gift that I’m giving myself today.