Making Fun in Bad Times

Just now I wrote four paragraphs and accidentally hit an unknown key and it disappeared. That's the theme of the past two months-put in a lot of effort for nothing. I took two chemo treatments that didn't work and had side effects; I put time and attention into a man who clams up under pressure; I began exercising only to find that a flare made it impossible; I prepared a pile of beautiful baby room accessories and clothing and cannot begin the market on time (you can see examples below).

I am in limbo, fighting a flare without specific meds for it. I rarely leave the house due to pain and lack of energy and frequent infection. I can't start the market with my comrades next Sunday. I have prepared and prepared and I can't carry on until something ends this.

I'm still coming to terms with the rituximab failure. Four years ago, that medicine was like a miracle. In a lot of ways it liberated me, making me healthy enough to get out of the house, be with friends and family, build a market business instead of just existing on the internet. Now, one bad treatment cycle and my doctor has stopped it. The next medication choice leads us into uncharted territory.

Today I recognized that creeping self-pity and overwhelming sadness and chose some activities to fight it. I re-read Knit 2 Together, Patterns and Stories for Serious Knitting Fun. Tracey Ullman and Mel Clark put some unusual patterns and fun narrative together, and they seem better and more useful to me now that the first time I read it. I have lots more knitting knowledge and experience and more appreciation for elegant construction and a sense of design humor.

I also pulled out a box of Seinfeld dvds, and I'm going to work my way through several seasons. It is perfect for a knitting accompaniment. There's no action for me to look up and follow. Conversation is the whole show-what happened or didn't happen or should have happened, nothing too banal or trivial to discuss. In my family, where each one's opinion is too important to keep to oneself, this sounds very familiar, and the show makes me laugh like a crazy person.

I have a crockpot of my favorite flageolet beans. Interesting food is more important when you eat alone at home day after day. It's a cheap luxury and one of the few ways I can impact my disease right now.

I've promised myself to keep writing when things are bad. This account should always be about the totality of having this damn disease, not just the triumphal moments.

Peace.

Slavery Knitting Heritage

Yesterday I picked up a book that's been on my shelf for a long time and began to read. Mighty Rough Times, I Tell You, edited by Andrea Sutcliffe, is a compilation of narratives by former slaves. In the 1920s and 1930s there were a couple of projects designed to get first-hand accounts of slave life by interviewing former slaves who were at least 10 years old by the time of the Civil War. The aim was to record the responses to a standard questionnaire and amass a bank of information from those who knew the institution of slavery best. This could be compared to the Worldwide Shoah Memoirs Collection of Holocaust survivors narratives.

The narratives in Mighty Rough Times, I Tell You were obtained from slaves who resided in Tennessee, and they feel pretty close to home as I read names of towns and rivers that are thoroughly familiar. Tennessee was initially an abolitionist state, and even after 1830 slavery did not exist to the extent that it did in other southern states. That didn't make it any more palatable or less cruel, as the individuals in this book describe.

Early in the book, a woman named Precilla Gray is interviewed. She was raised in Williamson County and passed around to several members of the same family. Describing her first "mistress":   "My first mistress had three looms and we had to make clothes for everyone...I was taught to weave, card, spin, and knit..." as well as to do rough field work. Under Missus Snythia, "soon as the chillun was seven years old, they started them knitting...We wore yarn hoods, shawls, and pantalets, which was knit things that come from your shoe tops to above your knees...When the Civil War was starting...I had to knit socks and helps make soldiers' coats."

I picked this book with the grudging feeling that I was getting into something that would be completely unpleasant. It is exciting to find this knitting connection and bits of information about what African-Americans in slavery times were knitting. For instance, who knew that leg warmers (pantalets) were around before the 1970s made them popular outside the ballet world. I have peeked ahead (yes, I know!) and I see the word knitting coming up again. The piece of my past history that began with slavery has some dreadful, evil, inhuman detritus, but it also has knitting!

Peace.

Finding a Stitch Pattern : Neglected Post from January

I love how things lump together in life. They don't necessarily occur in threes, but if I read an article about sea turtles this week, a friend will mention a documentary or participation in a rescue next week, and maybe I'll find one in my bathtub, too. That happened this week with a stitch pattern.

When people talk about knitting, they tell you that you just need to learn two stitches-knit and purl. What they don't mention is that there seems to be an infinite way to put those together to form fabric that functions and looks different. I am knitting an infinity scarf from Noro Cash Iroha, a lovely yarn with the following fiber composition: 40% silk, 30% lamb's wool, 20% cashmere, and 10% nylon. While wool and nylon are fairly elastic fibers, the other two have very, very little. I don't want this scarf to be saggy-it needs to drape, but not hang flaccid-so I'm choosing a stitch pattern that will add its own elasticity. This is a custom order and I cannot spend an infinite time (an infinity scarf is knit in a ring so that it has no ends; the name doesn't come from how long it takes to knit) constructing it. Cabling is attractive, classic  and elastic, but takes pretty good time and effort, so I'm going to make faux cables. Faux cables have no real crossing but give the illusion of it. There is a faux cable I used once that I love. It has a pretty, rounded appearance with a little eyelet in the middle. I have looked on and off for this pattern without success. Yesterday I found something close to this in my handy stitch pattern book, but it wasn't exactly what I wanted and when I began to knit a swatch, the book instructions were wrong. I corrected the instructions and made a nice swatch, deciding this was an acceptable pattern to use.

That should be the end of the story. Today, a free pattern offer led me into the Tahki yarn website, and as I scanned several pages of freebies, a sweater appeared with the pattern of faux cables I love. I quickly downloaded the pattern, and it is working beautifully in the swatch I'm knitting.

It is rare that I reveal my true knitting geekiness, but there it is. Stitches matter.

I held onto this post with the intention of adding a photo of the finished product. My photo isn't great, but you see it.  The scarf is long since delivered, and I had forgotten this draft.

Peace.

Tricky Immunosuppression: Body Maintenance Work

In this new year, things must change. Last year I worried nonstop and worked frenetically on my few available fronts to stem the political tide of venom and ignorance in this country. This year, I am backing away from politics. I want younger people to see the light and feel the atmosphere and take up the standard. I am going to work on myself.  The results are more satisfying.

I'm sure my usual optimistic, cheery demeanor fools many into thinking lupus is like hypertension-take your medication, eat right and exercise, and it's all under control. Last week I took my semi-annual treatment of the B-cell killer. Two days later, after a normal morning preparing breakfast and caring for dog, fatigue hit me and curtailed all my weekend plans. Today I am dealing with a skin infection that developed in a matter of hours from normal skin to a bright red, oozing, malodorous expanse that will require special care for days. I feel like a leper. Does hypertension ever make anyone feel like a leper?

Matters of the immune system are tricky. If medicine is suppressing its function, infections begin with little warning and progress quickly to far beyond what is normal in a non-compromised system. The infection I have would ordinarily be a little itchy redness, not the awful mess that I described. I wouldn't have to pull out all the stops to treat it and prevent it from spreading-my body would handle it for me with minimal help.

Sometimes I tire of being the maintenance crew for this damaged body. I stay away from people when I feel like this. I don't want to hear them talk about the difficulty of finding the right gold dress or how long it took for their plane to arrive. I don't want them to look in my eyes and see that faint suicidal longing that I will not indulge but cannot escape. Yesterday I heard someone close say "I feel like I'm in exile." She thought it was because she was not where she wanted to be, but it is because she is not who she expected to be. I get that.

Peace.

Countdown to 2013

2013 is hours away and I am excited. The total toll of 2012 was rough, but it left me with two things: improved physical condition, and a better heart.

Back in the spring, an $11 per month gym caught my attention. Just five minutes from my house and open 24 hours per day, every day of the year, it overcame all of my barriers to exercise.  When I began I chose a few minutes on the treadmill and a few strength-building weight machines.  I gradually worked up to 20-30 minutes on either the treadmill or recumbent bike, and a regular sequence of upper and lower body weight machines. It only took a month of twice weekly visits for me to notice an increase in leg strength.  My endurance increased rapidly, too. I had to stop for a while in late summer and early fall due to a series of skin Candida infections, but I didn't lose the benefits. As I finish the year, I can climb stairs using both legs without relying on the handrail, I can go down stairs without a rail to check my balance, and I get off the floor much more easily.

This conditioning was the basis for my ability to work more frequently at the market. It takes strength and endurance to load and unload, set up and take down all the equipment to make my store each week. In the past I could only do it with a significant amount of help. Now I can go to market alone and handle all my equipment, and a day of working in my store doesn't make me take to my bed for the next three days.

It still remains that my illness can crop up at any minute and change my plans and keep me down for weeks, but it doesn't deplete my strength to the point that I must start from scratch and feel so disabled for so long.

The other benefits are probably obvious - I can get out more with friends, do household chores and run errands, and the additional strength is a confidence builder.

This other thing-the better heart-is a trickier concept. First, let me say that I don't believe that "What does not kill me, makes me stronger".  I don't know what Nietzsche was talking about, but I rarely see anyone who damn near died feeling stronger, at least not for a long time. So I don't mean that the crap we were mired in this year left me a stronger person. Instead, the ring of loving people around me helped to protect me from the pervasive crap, and with that protection, I was allowed to grow and do some good and not sink into the mire. Having that special ring of friends and family is a palpable thing for me-in my mind I can feel their love and support, and I know they wish me well. They buoy my daughter and me, share their own strength and heart, so I am not depleted. God is also there, making us all better than the molecules that form our flesh. She infuses us with the desire to stay alive and make life count, to stay connected and be part of that caring circle, feeling and supporting and giving, communing, and altogether radiating something lighter and better.

2013 is for that lighter, better thing. Peace.

The End of the World

I anticipate the coming of every new year, usually because I expect it to be the best yet. I must admit that 2012 was very difficult, and I look forward to 2013 mainly because this year will end.

The major problem this year has been our financial strain. It is no secret that the recession (read major depression) of 2008 depleted my nest egg to a level that changed our standard of living. We adjusted our budget, sold the big house and moved into town and into a small but comfortable place that should serve quite well for one or two people. That seemed to work until medical bills began to pile up. Having two chronic illnesses in a family takes its toll. I've been reminded again and again that the USA is unique among western nations in failure to provide adequate health coverage (read universal health care) for its citizens. 

For most of the year I lived with the strain of knowing that if this country elected a Republican candidate, things were likely to get much worse. With the measures the GOP planned, I would need to sell my house and move to an apartment, it would end of my daughter's opportunity to complete a college education, and we'd suffer a lack of access to the expensive drugs that keep our household running.

Having a daughter who is a young woman now, I also dreaded the almost daily announcements coming from Republican lawmakers who were pushing to take away her right to equal pay, adequate preventive health measures, and her right to determine for herself when it was right and healthy to have a child. Politicians from the far right were calling her nasty names for being a woman and preventing fellow women from standing up to protect her-even women who were elected officials. 

I felt all of this as I came to the realization that being African-American in this country was not as safe as I had come to believe. The racism was palpable during President Obama's entire first term, but worsened and became more open as he campaigned for a second. 

The election is over, and we have breathed a collective sigh of relief - those of us who wanted good common sense and adherence to the principles this country was founded upon...those who accept diversity and abhor hatred...those who understand that basic services and rights for all citizens make a more productive, fair, prosperous nation. 

The thing is, removing the immediate threat hasn't brought me back to my usual unstressed normal. At times it has felt like the end of the world, and the fatigue that follows a period of severe fear and anxiety doesn't recede with a single night's sleep. 
So...I hope that the physical and mental exercise of writing "2013" will be therapeutic for me. 

 

Evaluating a New Treatment

Often I am asked about the latest new miracle cure someone has seen in the news or on the Internet. I give the same basic information. There are certain criteria that you can use to evaluate any treatment you encounter. The following is a reply to a friend who asked me about a "cure" for fibromyalgia. I have fibromyalgia (in addition to lupus) and I know it to be a debilitating, painful condition, although not a fatal one. It doesn't surprise me that a patient would search tirelessly for relief. That makes it even more important to think twice when you come across a newly acclaimed therapy. Desperation should never make you fall for a hoax.

Dear _____:

Here's the deal.

Doctors in practice like positive results. Everyone wants to make their patients better, with a minimum of side effects. If a new treatment is promising, and has good research to support it, most doctors will be using it. Anything that hasn't reached that use is because there is some solid reason: either it doesn't work, or it is too dangerous.

I checked out the information on line about Dr. St. Amand's treatment. A tell-tale sign of an illegitimate claim is that it disparages all other possible treatments. Dr. St. Amand's information clearly tries to discredit other treatments for fibromyalgia that have been shown to be effective and that are widely used.

I looked up guaifenesin in some medical references. It has no actions that would help fibromyalgia. It's action is solely on the formation of mucus in the lungs. Fibromyalgia is a disease that affects sensory nerves and the way pain is perceived in the brain. Moreover, guaifenesin is broken down in the liver. Many other drugs that are used to treat auto-immune disorders and fibromyalgia are metabolized in the liver, so adding to its work with another, unnecessary medication is not wise. In addition, guaifenesin is broken down to make lactic acid, a toxin produced by muscle work. What could be worse for fibro?

Don't forget that there is a placebo effect with any medication. I'm sure Dr. St. Amand could find a roomful of people with fibro who had a placebo effect on his regimen and reported feeling better. That doesn't mean the drug works.