Friday, October 20, 2017

My Kind of Crazy


I read two novels this week. Both have female characters who deal with mental illness, as do I. Naturally I've been thinking how these characters experiences are similar to and different from mine.

The book I enjoyed most was Turtles All the Way Down by John Green. I'd stopped reading RA novels as a rebellion against my profession, but my husband turned me on to his Vlog Brothers Youtube channel. Liking the author as a person led me to buy and read the book.

The character, Aza, is a seventeen-year-old girl in high school. She has the typical challenges of friends and homework, but she is also coping with the death of her father and with navigating "normal" life with OCD. Her illness takes the form of obsessive thoughts about her microbiome. Aza is terrified that the wrong germs will prevail and kill her. She reads and rereads articles about deadly bacteria.

Knowing that so much of our bodies are made up of bacteria makes her uncertain of her self-ness. Also, therapy has taught Aza that she is not her thoughts, but then, who is she? Medication is also an issue because if those chemicals change her, is she still herself?

The medication issue was a big one for me. I resisted antidepressants for a long time because I was afraid they would change who I am. Fiercely anti-perky, I really didn't want any form of "happy pill." I only started medication for the sake of my children. After more than 20 years, I can testify that my medications did not take away any of my natural German snarliness. They do keep me from crying all the time.

Aza's obsessions helped draw me into the book. I'm also fascinated by bacteria and parasites. I watched every episode of Monsters Inside Me. But my interest doesn't come with the same fear or the same sense of disconnection from myself. Aza struggles to find and hold on to herself, I struggle to value a self I sometimes feel stuck with.

My struggles more closely resemble those of Emily in Emily Dickinson: Beyond the Myth by Patricia Sierra, yet I had a hard time getting into the book.

I was looking for a biography. This is a novel from Emily's point of view. I don't think Emily, as portrayed in this book, would approve.

I do approve of the author downplaying whatever mental illness Emily may have suffered from. Diagnosis of the long-dead is a dicey science. In the book, Dickinson's withdrawal from society is a conscious choice she makes to focus on her art. At least that's what she tells herself. But we still see Emily unable to descend the stairs to meet a friend, unable to leave her house to sit at a loved one's death bed. 
I understand. social interaction is a lot of work and sometimes I just can't. Sometimes, even if my body is working, my mind revolts and I really need to stay curled up in a quiet corner.

Fortunately, I have a sense of adventure that gets me up and out of the house. It also gets me in trouble sometimes. Tonight is one of those times. Months ago, I was gutsy enough to ask a kind woman with a beautiful home to host a boutique of my knitting. Now it's here, the neighborhood is invited and I'm terrified. This is happening Thursday night. I publish Friday, so it will all be over when you read this. How it went is the topic of next week's blog. 

THE KNITTING--is all packed up for the show or for a trip we may take afterwards if technical difficulties with the new car are taken care of. I'll get back to you on that topic as well.
The fall crocus are in bloom--hope for spring as the leaves start to fall.

Friday, October 13, 2017

My Week as a Sidekick

I'm trying to learn how to take good pictures with my phone.

Last weekend was a wonderful adventure--Road trip!

Husband was eager to get out of the house and away from his computer. I'm always up for a drive. So we hopped into his sexy red car and started out, choosing our destination as we went. Eventually we settled on Flaming Gorge, a reservoir and hydroelectric dam in Eastern Utah.

My husband takes really good pictures.
It's no fun to go the same way twice, so we circled around the back side and arrived via scenic byway.

We saw antelope, deer, bison, and a herd of either wild or very unsupervised horses. Fall colors were fantastic and pretty small towns tempted us to move away from the traffic and strip malls at home.

We ended up driving all day, coming over a mountain and down a winding road towards home as the last light faded from the sky. It was a glorious day, definitely a wonderful prelude to an otherwise tiring (though productive) week.

I am slowly getting better at this.
I feel like I spent the rest of the week at a car dealership. The insurance money came in from our deer-totaled car and Oldest was ready to leap into adulthood and buy a car of his own. He did the research, picked a likely car, and set up an appointment to see it at our nearest Carmax.

Oldest didn't need my help, except it was apparently my responsibility to add the new car to our insurance.

So I went along, listened and nodded, but let my son do the talking and deciding. The presentation there was low-pressure and informative, my kid is really a grown-up, so it was as good as buying cars gets.

Which means it only took two or three hours. That's a long time to sit to make one phone call.

But oldest has a car now and doesn't need mine. Mission accomplished.

We sidekicks are always happy to help.
But two days later, I was back at the dealership. Husband's sexy red car is impractical in snow and aging into increasingly expensive repairs.  So he has been talking for several years about replacing the dream car with something more practical. It turns out that our road trip was a way of saying goodbye to the Mustang.

Oldest's positive experience led my husband to the Carmax website and to two possible replacement vehicles.

And led me to another couple hours at the dealership. More input was expected from me this time. Technically this is "our" vehicle, but my husband is the one who will be driving it every day. This is replacing a car from wall posters and action movies. My husband was the one who had to choose.

We are now the proud owners of a luxurious silver SUV.

And I got to call the insurance company.


THE KNITTING

I've completed the second of five or six planned mermaid tail blankets. This is as many as I have to have ready by Christmas and I've got a good start on next Christmas.                                                          

This is a very long, mostly wool scarf I will call Odd Ends. I would wear it if I wore coats. In the meantime, I will put it up for sale.

Next week a friend is hosting a trunk sale, which I hope will greatly reduce the inventory in my shop. After that I'll spruce things up and add more new items.

This week I will be desperately tucking in loose ends and getting things accurately tagged and organized.

The last item I am listing is my only attempt so far at the "messy bun hat" which has at least been popular on Twitter knitting feeds.

Basically I had a limited amount of lovely yarn and ran out. I think it works.

                    

Friday, October 6, 2017

Planting Pretty Poison


Two weeks ago today, my oldest son was on his way to work, then a deer jumped in front of his car.


Oldest is fine. The car is not, nor was the deer. (Cops put the large doe down after arguing for an hour over who had to do it.)

But it was one of those horrible reminders of the fragility of our little universe. And life isn't designed to give us time to hold our loved ones close until we stop shaking.

No, once the police were done, I had to drive Oldest to work, and pick him up, and sort through insurance decisions with my husband. In a few days, I dropped Oldest off at the airport for a work reward trip. I'm not usually nervous putting people on planes, but we had already used up a lot of luck, karma, blessings, so I was very relieved to pick him up a couple days later.

Scottish, not Serbian, and best played loud

Still unable to curl up and cry, I channelled fear into aggression. Instead of poetry CDs of Dickinson and Whitman, I crank up nihilistic Franz Ferdinand, to volumes my young adult children turn down.

Oldest has understandably been  avoiding the wandering country road where he hit the deer. I have sought it out, driving it whenever possible to break any curses there may be.

And I bought and planted bags and bags of daffodil bulbs.

Deer-proofing for flowers
You see, our usual contact with deer is in the garden. Deer eat everything we want to grow: vegetables, fruit trees, roses, pansies, and tulips. They are pretty cheeky too, walking between the cars and our house to eat the roses, picking pansies out of pots on the porch.  Each spring, I enjoy my tulips while they last,  knowing that they will inevitably disappear in the night.

 Serious gardeners in our neighborhood build serious fences, and sometimes find deer trapped inside, tangled within, or impaled upon them. Landscaping becomes an act of war.

Deer-proofing barbed-wire for vegetables--10 feet high
And plants are weapons. I've long since given up on pansies. New plantings are all made with deer in mind. Plants for my pots must be fuzzy or aromatic--traits deer don't find terribly appetizing. Or they can be poisonous, like the daffodils I've been planting.

I hurt myself planting daffodils. I dug in the garden and pulled out weeds as if I were a healthy person accustomed to physical work. I exorcised some fear, but created a lot of pain. I had to crash for most of the last week.

This Tuesday I sat in the car and cried, unable to face the effort of walking into the gym to swim. But I was able to walk the aquarium on Wednesday and limped into the pool on Thursday.  I'll hike, gingerly, today. I'm on the mend.

Also, despite my rage, I'm really not planning a cervidae slaughter in my spring flower garden. Deer somehow sense that daffodils are poison, so they leave them alone. Deer are smarter than I am that way.

Because I've been poisoning myself for about a month now--with health food.

As I cleaned out my cupboards so Youngest could sand and stain them, I found several boxes of herb tea which I started to consume in large amounts. I would microwave mason jars full, then refrigerate them, so I had something cold, but not sweet to drink.

I enjoyed gallons of smooth iced tea before unbearable itching reminded me I am allergic to chamomile.
I found out about the allergy decades ago when I planted the dainty herb in my garden. Young and ambitious, I had romantic ideas of a kitchen filled with herbs hung upside-down to dry. When I handled the dry herb, my eyes watered and I thought I would sneeze myself to death.

I haven't grown it intentionally since, but chamomile has become an odd invasive weed, growing only two inches high up and down our driveway. It hasn't hurt me in that form, but some of it's cousins have. I'm allergic to the whole sunflower family. I can no longer grow the tall garden sunflowers that rain pollen on unsuspecting passers-by. A gift of sunflower-based soap from Kansas gave me reactions through a plastic wrapper. The wild cousins that beautify roadsides here in the fall are okay-- as long as I don't get too close.

I didn't think I was allergic to drinking chamomile. But it is the most likely cause of an unbearable itching that has covered my entire body and made sleep impossible. Even as the worst has eased, I feel the sensation of trying to pass thistles through my pores.

 I've stayed away from all herbal tea for over a week now, and urges to pull my skin off have calmed. I'm down to my standard constant itchiness instead. I talked to my rheumatologist about the ongoing feeling of having bugs crawling on me. He likes the term "formication" with its tidy Latin ant root, but doesn't offer solutions because it's not his specialty.

 I have an appointment with my family doctor on Tuesday. Maybe it will give us something more interesting to talk about than my cholesterol for a change.

Maybe she will even have some suggestions. Right now all small comforts are appreciated.

Friday, September 29, 2017

Lessons from the RA Community


In this final entry for RABlog Week, I wanted to follow the prompt and give shoutouts to many of the good blogs I've read. But due to the other circumstances of life, my brain went on information overload days ago. I've subscribed to as many blogs as I can and will read more of them when I can think again. I'll try to give the deserved thanks and shoutouts directly to the writers and through links in my blog as I get caught up.

What I learned from the community:

I need a shower chair, cool scissors, robot vacuum, and a therapist.

People sicker than I am are doing serious advocacy work.

There are a lot of people who understand exactly how I feel.

The RA community offers great sources of information.  I should pay more attention.


What I learned about the community:

For the last few years, my social media uses have been very specific. I use Facebook to see my cousins' babies and my former students' adventures (and the other way around). I use Twitter to scream into my political echo chamber, promote my blog, and try to lure people to my Etsy shop. (I also follow sheep farmers and some great, quirky sites like Chaucer Doth Tweet and A Bear.)

Which party does your cat support?
Blog week was a good reminder to me that there are a lot of nice strangers out there. I don't know anyone's political leanings, what fellow bloggers are selling, or even what their cats look like. I do know that they are people who have struggles similar to mine. All of us are seeking solutions and reaching out to share what we learn and help each other.

Thank you to all the contributors, But especially to Rick for giving us all this opportunity and for encouraging my writing year-round.

What I learned about myself:

My attention span and memory are horrible (Fibro-fog). I look for articles and realize I've already read them or somehow missed them from days ago. Also, I take notes of names and sites and lose my notes. I've subscribed to as many as I could, so hopefully I can get to know these authors over the course of the year.

I took on RA Blog week as a personal challenge. I want to start writing a 1/2 hour podcast in addition to my blog, so I need to find out if I can actually focus on reading and writing long enough each day to act like it is a job.

This week was as bad as weeks get. It involved two trips to the airport and one to the DMV as well as above average family stress. I'll tell the whole story in next week's blog. Suffice it to say, writing five short blogs this week has been tough. Finding time to read and take notes on all of the other good blogs has been harder.

But I did it. It took more caffeine and pain pills than I usually take, and not everything was done as thoroughly as I would have liked. But I accomplished the goal and am looking forward to next year.

Thursday, September 28, 2017

Somnophillia

Todays focus on RA Blog Week is hobbies. I like to write, read, and knit, but those who know me well know that my greatest passion is sleeping.


I have long known the title for my biography: Debra Naps. Of course Scarlett Johansson will play me in the movie version.

Sleeping is my favorite hobby--not nighttime sleeping, marred by worries about tomorrow,  and next month--but napping.

Naps are indulgent moments stolen from laundry or paperwork, escapes from worry and pain. Even before RA hit, my weekend and occasional afternoon naps were sacred time. My husband and children have always let me enjoy escapist sleep.

I needed to nap because I taught middle school. Teaching is a job that takes everything you can give and more, so most teachers, even the young ones, are nappers. My brother-in-law, who teaches and coaches, cat-naps sitting up any time he gets a chance.

During the fifteen years I taught with RA, naps kept me alive. Bad weeks consisted of little more than teach and sleep. Sometimes napping was the only way to reboot and start again with a little less pain. There were many days that a nap during lunch and/or a nap during my preparation period made teaching the next class period possible. A new administration unsympathetic to that need was one reason I had to retire early.
That was survival napping. Now that I'm no longer working, I can once again enjoy hobby napping.

But it's harder than it sounds. RA and fibromyalgia have effected all of my hobbies. I knit more slowly and crochet only rarely and under protest. My hands also object to writing. I can type, but taking a notebook out into the sunlight and working out  poems just isn't happening anymore. Reading is harder too. It sometimes feels like a lot of effort.

Napping should never require effort, except that it does. When I lie still in a quiet place, my body starts to yell at me. I'll put on podcasts for distraction and sometimes lose consciousness, but rarely as often or for as long as I would like.

I don't fall asleep quickly at night either. I'll often give up shortly after my husband seems to be sleeping deeply. I'll go into another room and look at British farms on Twitter for a couple hours (literally counting sheep) until I am truly sleepy.

I've almost come to accept the fact that trekking in Nepal is no longer an option in my life, but I'm not willing to give up on napping. 

THE KNITTING

I'm still producing new things to share. This is a quick wool hat that I think turned out cute. I have just enough yarn left over that I will probably add a pom pom.

Wednesday, September 27, 2017

It's Great to be Loved by a Gear Head.


The topic for RA Blog Week day 3 is partners. I've got a great one. Almost all of my tips and tricks  for surviving RA were brought to me by my gearhead husband.

It is easy for me to tease my husband, because when he develops a new passion he goes a little overboard. When he wanted a fish tank, no lonely beta fish in a bowl would do. We had a full-fledged salt water reef tank complete with day, night, and moonlight lighting, daily chemical water tests, and intricate filter systems. Interests in photography and guitars have followed a similar pattern. When he starts something, my sweetheart needs all the tools to be satisfied that he is doing it right.

This attention, or obsession, with detail ties right into my sweetheart's core skill. He is a problem solver. Professionally, he helps big companies fix computer issues. Personally, he fixes our finances, plans for retirement, makes sure that everything works.

Except me. My illnesses really frustrate my husband because he sees me suffer and struggle, but he can't fix the problem. The closest he can come is to notice the details and obtain the gear that will make my life a little bit easier.

For a long time, our goal was to keep me teaching as long as possible. If I could work until I was fifty-three, put in those thirty years required for a full pension, we would have a dependable income source for the rest of our lives.

Teaching takes a huge toll physically and psychologically. I thought my job was killing me even before RA. My problem solver did everything he could to make life easier.
This tool would have kept me in the classroom.





I keep asking, but no one will buy me a gravity belt.
Standing through an eight-hour day is impossible. My love got me a computer chair I could (and did) sleep in and a stool that was perfect for perching on in front of the classroom. He made no objection to my buying the one shoe that worked (Minnetonka Moccasins for me) in every available color. I think I own nine pairs right now.

 One year my Christmas gift was the most gorgeous wooden cane, which was sometimes necessary for me to get outside for fire drills. My arms got tired too, so before I was able to steal a rostrum from a retiring colleague, he researched buying one.
I could replace (or repair) my doctor with a medical tricorder.

At home, the food budget was expanded to allow for as much take out as necessary, but my kitchen was upgraded with subtle helps as well.

The floor of my work triangle is now covered with a wonderfully padded rubber mat. It saves my feet, my legs, and my dishes. I was a clutz pre RA, now dropping things is a daily occurrence, but most dishes can bounce on this floor.

The fish tank taught my husband about the importance of natural, full-spectrum lighting. I have a big window in my kitchen, but it faces north, there is no sunshine. He installed  a new florescent fixture and found the right bulbs. The heart of our house is now a possible treatment for seasonal affective  disorder.
I hope to postpone joint replacement until it can be done right. 

I did have to leave teaching early, but my love has continued to provide technical support for my health. We moved our bedroom into the basement because that is where the laundry room is. I can navigate the stairs now, but knew a great lady with MS who died after falling down stairs carrying a laundry basket. I am terrified of walking on stairs and being unable to see my feet.

We now have remote controls for several sets of lights, so I never have to stumble through a dark room. Despite my reluctance and tendency to lose or wash small machines, I am on the verge of having an iPhone to keep me always within reach of help.
DRDs are way better than Roombas. 

Now that I am looking for a second, physically gentle career,  my husband is eager to help me in any way he can. He has guided and improved my photography for the blog. As soon as I expressed an interest in podcasting (about poetry, details to come), he was ready with tech links and thoughts about the gear we can get to make it work well.

Just this past weekend, we went into a furniture store to look at computer chairs to help my husband put in the long seated hours his work requires. I looked longingly at a set of pillows that help me sleep semi-upright with my knees raised. I suggested Christmas, but we came home with them.
The only way to fly.

THE KNITTING

I really loved all the gear that was introduced in other people's blogs about tips and tricks yesterday. I am making a list and will share it with my darling gearhead soon.


I am spending my week knitting and writing to be able to participate fully in blog week. Luckily hats are quick and I had just enough of that beautiful Shetland left. This is very loose-filling and I like how intricate the cables look. I may have to keep it for myself.

Besides, another thing my husband does for me is try to take me walking every day and fall weather is here. He has mentioned bicycles. Neither of us has ridden for about three decades, but there are some great places around here to ride, what do you think?

Tuesday, September 26, 2017

50 Shades of Biologics: My Sick Relationship with Big Pharma



Day two of RA Blog Week
The official topic is "Tips and Tricks," but my main tip is to find a partner like my husband, and that is tomorrow's topic. In the meantime, I will play a wild card and write about drugs.

After fifteen years with RA, I have tried all of the biologics--almost. Some worked really well for me, but never for more than two years. Some didn't work at all.

 Before I started each of the last four "miracle drugs," my rheumatologist told me roughly the same thing. He read the list of drugs I already tried and told me there were two remaining options:  a new biologic or a drug he almost never prescribes because it can cause some really nasty side effects.

Considering the side effects listed for biologics he's given me (sudden death, anyone?), I am thankful there is always a choice. But I am a bit cynical about where these drugs come from.

A friend with more faith than me likes to believe that everything was created for a reason. She looks at sea horses or hagfish when we visit the aquarium and suggests  they may contain the cure for cancer. My imagination runs a few steps further . . .

Hagfish slime is determined to cure neither cancer nor baldness. It does cause various nasty side effects, so the pharmaceutical company sticks it in syringes and sells it to people with autoimmune diseases for several thousand dollars a dose. Since they can claim it takes months of weekly injections before taking effect (or not), profits are guaranteed.

The horrifying prices do suggest lack of caring for patients. But they try to make us feel otherwise. I'm currently getting my liquid gold for free under a "copay assistance program" through the manufacturer. This is working fine for me now. My insurance company is paying lots of money and the drug maker is making lots of money, but I don't have to see it. Unfortunately, this will only work for one more year. After that I lose my Cadillac health care plan and probably go on Medicaid. Big Pharma doesn't offer copay assistance for Medicaid or Medicare patients. I will be in trouble.

Big trouble--because, so far, nothing works better for autoimmune diseases than biologics. I've had a few that failed from day one, but most have helped me continue to work, walk, and maintain my will to live. Lab tests back this up. I've hurt more than I've not hurt, but X-rays reveal very little damage to my bones and joints.

I've had less success with the cheaper, more natural remedies so often recommended online. I was a vegetarian for over a year. I went off sugar for six months. I faithfully used the CPAP machine for four months. None of those things made any difference in the constant pain and resultant exhaustion caused by RA.

I am watching, but not pioneering, a couple of odd new panaceas. Fecal transplant looks interesting. More interesting, though no less gross is parasite therapy. The theory is that our autoimmune systems are freaking out because there is not enough genuine work for them to do. People are intentionally getting infected by parasites to improve their health. I read about this in the 2011 book, Wild Life of Our bodies: Predators, Parasites, and Partners That Shape Who We are Today by Rob Dunn. A more recent update can be found in this New York Times Magazine article.

In the meantime, I trust that by the time Cimzia stops working for me, fermented narwhal horn will be available under a meaningless name at exorbitant prices.


THE KNITTING


The accomplishment this week is the border. It makes the shawl a little bigger and a little more shawl-shaped. The yarn is a lovely merino/American bison blend.