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.

Monday, September 25, 2017

Lessons from Depression


After about fifteen years of of RA and two of fibromyalgia, I can certainly understand how these conditions can cause depression, but in my case mental illness came first. Depression isn't fun, but I'm thankful that it was my first chronic illness. It taught me lessons that have helped me cope with RA and fibromyalgia.

1. The disease is real and help is available.

I started feeling crazy during my junior year of high school, but didn't aggressively seek treatment until after I had my first baby at 25 years old. I kept thinking it was a passing thing. When I talked to my family doctor during college, he blamed everything on stress. I gave up on doctors for a few years after that.

Ultimately, I sought treatment because I read an article about the effects of maternal depression on children. Even then, getting help took a lot of effort. I worked up the courage to make an appointment with the EAP program at work, then found out that they didn't provide counseling, just a list of psychologists and psychiatrists I could have found on my own. Finally, I went to my doctor (a different one), and told him I was depressed.

Getting diagnosed with RA was almost as bad. I didn't have the obvious joint problems at first, just the flu-like symptoms. I visited my family doctor several times over a year because this virus she thought I had contracted wasn't going away. Blood tests proved I was fighting something, but she had no clear answers.

At one point, I wavered between seeing my doctor one more pointless time or buying the magical acacia berry juice my neighbor was selling as a cure-all. A health teacher friend urged me toward the doctor.

It took a whole year before my vague symptoms became defined enough for my family doctor to send me to a rheumatologist and almost another year before I figured out how to communicate my needs and get treatment. (Over a decade later, this same specialist added fibromyalgia to my list of illnesses--a problem many other doctors refuse to believe in.)

2. It isn't my fault. 


Before I got treatment for depression, I kept making excuses for it. Maybe if I got more organized, got married, got a better job, exercised more, had a baby, prayed more, etc., I wouldn't feel miserable all the time. When the next accomplishment occurred and I still felt miserable, I would also feel guilty. How could I be so ungrateful for all my blessings? If I were a better person I would feel happy all the time.

When drugs worked almost immediately, I was able to accept that the chemistry in my brain is wonky. Period.

In a culture that values self-sufficiency, we can also blame ourselves for physical pain. Did I catch RA because I ran a half marathon without training enough, or because I did or didn't eat particular foods?

No. There is a hereditary tendency and for no particular reason my immune system flipped out.

3. Drugs can help.


I used to avoid medication. I didn't take so much as Tylenol during either pregnancy.

But kale won't cure depression or RA.

Generic Prozac keeps me from crying all the time and reduces my suicidal impulses. If it doesn't work for you, talk to your doctor and try something else.

I take several handfuls of medications and supplements now, all doctor recommended. I see myself as an old car and the meds as the duct tape and bailing wire that keep me in one piece and running, but at least I am running.

4. Self care is essential.

Kale won't cure you, but good nutrition, exercise, sunshine and rest can take the edge off. So can  good books, movies, and company.

I am an angry depressive. Whenever I found myself getting grouchy in the classroom, it was time for a day off. They offered several hundred dollars each year as a bonus for teachers who didn't use their sick leave. I never qualified and never regretted it.

Now that I'm done with full time work, I can focus on taking care of myself. I try to exercise every day. I try to make my home a pleasant place to live. I try to write and reach out to the world. But I accept that there are hours and days when I just need to sleep.

THE KNITTING

I wasn't sure I would be posting knitting today, especially this piece, because my depression is definitely weather-enhanced and the weather lately has been grayer than this natural shetland wool.

But today the sun came out. Gray is a favorite color, when it isn't raining, which is probably why I got out of control with this shawl. It is very wide, maybe too wide to wear without wrapping around twice. But it would be gorgeous on the back of a sofa I imagine owning in an alternate, cat-free existence.






Friday, September 22, 2017

Painful Nostalgia

panoramic shot of the Bell's Canyon Reservoir 

Dad grew up here,  within walking distance of an amazing part of the Wasatch Mountains. He loves to hike and fish and shared that love as soon as we were big enough. We frequently trekked to Bell Canyon Reservoir. It was a good hike for the whole family. The trail was actually a drivable road, so it wasn't brutally steep and was less than a mile long. At a relatively low altitude, the reservoir is one of the first places we could hike while other destinations were still snowbound.
The old, easier road

For tougher hikers, another (steep, rocky) mile leads to a waterfall. Hard-core adventurers can eventually get to the top of Lone Peak.

When I was nine, Dad and I went to the falls for the first time. It was a right of passage and the beginning of an adolescence filled with trails to lakes, summits, and waterfalls.

I miss these hikes, but especially Bell's Canyon. My very biased opinion is that it is as pretty a place as can be found anywhere.

In mid September, the water is low and leaves are just starting to change.

For several years during my young adulthood, access to our canyon became a problem. Although the reservoir is on Forest Service land, the beginning of the trail was privately owned. It was sold and built on, so we couldn't get to the road any more. But there was a "secret" alternate trail that worked for a few years until people living near it started to object. They even had the police turning hikers away one Memorial Day.

Eventually enough political fuss led to a solution. The city bought two pieces of land with enough room for parking lots and two new trailheads. Neither new trail is as easy as the original, but they are both very popular. The parking lots are jammed every weekend all summer. Even at night, as my husband and I walk in the park, we can see the flashlights of hikers moving up and down the trails. 


When we walk in the daytime, we look right up the canyon and  express a wish to hike to the falls one more time. A three-mile round trip sounds like nothing, but my husband has a bad knee and I have a bad everything. The hike is short, but jarring. Steep and rocky, it's three miles of stair climbing, with none of the stairs at standard intervals.

I am not stupid enough to attempt the falls, but that doesn't mean I'm not stupid. On Tuesday my boys were both home and I needed an adventure, so we hiked to the reservoir. Because it was a weekday and had just stopped raining, we were able to find a parking spot by the longer, but easier trail. The short trail follows a stream bed and is essentially a tall building worth of stairs with no level parts until the reservoir. The easier trail is more accessible, but not accessible enough that we didn't think it was very funny that there is a handicapped parking spot in the lot. 

The trail is steep and rocky from the start, steepest and rockiest for the first hundred yards. It has easier moments, but for the most part it's a steep, rocky, half mile. 

Oldest doesn't know how to hike slowly.  I saw him only occasionally. Youngest is my guardian angel. He stayed with me so the mountain lions and coyotes wouldn't pounce. There were a lot of people on the trail; I was probably perfectly safe, but appreciated the company.

Aside from the wild natural beauty, both the reservoir and the falls have an added advantage of great valley views. The rain gave us clean air, so we could see the entire Salt Lake Valley including not just downtown, but the lake. In the far distance were the silhouettes of Stansbury Island and Antelope Island. 


But when the whole world is in front of you what do you want to see? Home. I used to laugh at my students who would play with Google Earth not to explore the Himalayas, but to show each other their driveways. But it seems to be a human instinct. My boys and I stood by the reservoir and did what I have done countless times--followed the lines of familiar roads and landmarks to try and find a corner of our own roof. 

We couldn't see our roof because the trees are too tall. We couldn't even see the neighbor's yard I used as a landmark during my childhood. Thirty years is a lot of time for trees to grow. But we could triangulate ourselves between the recent grass fire in the park, the elementary school, and the cell phone tower. We identified enough neighborhood homes to have a pretty good idea which patch of trees hides our house. 

Oldest's cell phone informed us the hike was 1.4 miles and the equivalent of 17 flights of stairs. By the time we went to Dairy Queen and got home, it was a fun two hour trip. 

I've been paying the price ever since. Everything hurts. I'm in too much pain to sleep off the pain. Two days later, I'm writing this with a splitting sinus/exertion headache that the best drugs doctors are willing to give me won't touch.

It's not all down to one hike. My husband and I explored a different walking path Saturday and  walked too far (but met horses). I swam Monday. I even walked a bit the evening after the hike. 

We are both trying to lose weight and I am trying desperately to get strong enough to travel without really hurting myself. But so far I can't participate in regular moderate exercise without really hurting myself. 

Balance is frustratingly difficult.

Next week I will be writing without moderation. I have signed up to participate in an RA Blog week. The goal is to write each week day and there are suggested topics. If that's more of me than you want to read, I understand. 


THE KNITTING


I've almost finished the grey shawl. It just needs to finish drying and get photographed in a more scenic condition. It is currently wrong-side up and pinned to colorful foam boards, but when finished it should be an elegant accessory in recycled natural Shetland wool from Renaissance Yarns.  

My current project is to finish a shawl I started during the Shakespeare trip in June. It is made from a lovely blend of merino wool  and American bison from Mountain Meadow Wool, but isn't quite big enough and doesn't hold a proper shawl shape quite yet. I have ordered some more of the natural wool color and will add a border that will (fingers crossed) fix both of those problems. I hope to show you both shawls in finished states next week. 



Friday, September 15, 2017

Let's Trade


For several months I have been working my way through Alexander Hamilton by Ron Chernow. Reading is harder physically and mentally than it used to be, so it has been slow.

But I'm learning a lot and enjoying a feeling of recognition when finding the lines Lin Manuel Miranda worked into the musical.

 Much is written about the mess of America's finances after the revolution. Money consisted of a confusing mix of French, British, and Spanish coins as well as nearly worthless paper currency printed by the Continental Congress.

Because of this confusion, business was often conducted by barter, especially on the frontiers. Because alcohol was relatively easy to transport and always in demand, hard cider became a sort of hard currency.

Barter is a logical solution in new economies. When Mormon pioneers first colonized the west, they were allowed to pay tithing "in kind." If your sow had ten piglets, you brought one to the bishop. The same was done with every crop harvested throughout the year. It was the bishop's calling to distribute these goods among the needy and keep everyone fed.
(This was long before my time. I pay tithing online now, so I can't even say I pay in real currency. But I still feel tempted to bring my bishop some zucchini and a kitten and call it tithing, just to see his reaction.)

Failed economies resort to barter as well. Hyper-inflation helped destroy the Weimar Republic in Germany during the Great Depression. My great-uncles told stories of being paid with wheelbarrows full of cash which would be traded for a single loaf of bread.

That was in the city. Life was better for the farmers because they could eat the fruits of their labor as well as trade them for other needs.

But with many of our modern needs, barter won't work very well. It's unlikely I could pay for my water bill with a hat or keep the internet in by knitting a shawl.

In any barter society, I would be in trouble. In our current society I'm in trouble--hence the disability application.

I have yet to find a way to monetize my writing in our cash economy. I can just imagine negotiating whether a poem is worth a pear or some pork.

But there are reasons for barter even in a stable economy. For example, it is considered bad luck to pay money for bees.

My reason is that it is too hard to figure out the value of my knitting time. And I don't want to measure how much time I spend on each project. I often knit in exchange for extra yarn.

When a friend wanted to commission me to knit some lace throws for her living room. I proposed a trade of talents. She is a very skilled seamstress, so I knit throws and she sewed skirts. I thought one skirt for one throw was fair, but she insisted on sewing two.



 (Two more skirts are in the works. One is a winter one in silver velvet--very much in tune with our new weather.)

We each bought our own materials. I found fabric for four skirts (on Amazon) and we went together to my new favorite local yarn shop to find blue silk and alpaca for the throws.



I am very happy with the results so far and I hope my friend is too.

So if you set tile, work in stained glass, or are simply willing to steam-clean my dog-slobbered sofa, take a look at my shop. I bet we could work out a deal.

THE KNITTING

I don't feel like I knit as much as I would have liked this week. I have started the border lace on the grey shawl.


I have finished one mermaid tail blanket and started another.


Fall coolness has arrived. This is welcome, but wet and dark, hence all the indoor pictures. I finally had reason to wear a sweater. Sounds like good inspiration to knit more.