Sunday, January 30, 2011

But of Course I Am Still Knitting

I should be thanking the woman who ordered the scarf that is drying on the ironing board. She was insistent on Colinette's Point 5 as a jump-off point, but the addition of several other yarns and a mixture of stitches is what makes it super special. It has me thinking of garments in a different way - more art, less consistency. The bottom left segment is the original Point 5 in the Morocco colorway, knit in a herringbone pattern. Next is a segment of self-striping yarn from Universal, doubled to provide a long, continuous change of colors instead of just the three stripes. The next section is a long swath of Point 5 knit 2 rows at a time, alternating with 2 rows of a dusky rose single. The final portion is the dark purple/red segment in Point 5, with knitted fringe extending several inches in chunky strands.

I am knitting in two directions just now. It is a very cold, snowy winter in most of the U.S. It is going to continue for at least two more months, and I want to keep making warm things. You can see the teal fingerless gloves above, knit from a gorgeous hand-dyed yarn I purchased from On the other hand, the retail cycle has clearly moved to spring and summer and I need to produce a box of samples for Larue's. It will include cool scarves in bamboo and cotton that are decorative and comfortable for warmer weather. The pale lilac lace is a soft, silky bamboo. The multicolored, hand-dyed cotton is that herringbone pattern again, in a Cherry Tree Hill yarn that I believe is discontinued.

Everything I show here is pleasurable knitting. The process of taking the yarn and turning it into something that uses its attributes and becomes a useful, beautiful garment is so pleasing to me. This work is saving my life. In the midst of the pain and fatigue, I have something to grow.


Sick and Angry...and Sick

Every part of me hurts. It was torture getting out of bed and back in this morning. My hands are stiff and my fingers ache. Yesterday I ran out of steam in the old way, finding myself only able to sit and look. I have been on increased doses of prednisone for two months with no relief from this flare. This is how it used to be, the long flares I was accustomed to before I started taking rituximab.

When I began rituximab, we quickly determined that six month intervals between treatments allowed my flares to recur. My treatments were scheduled for every three to four months, and I had some blissfully better years. I was making progress with my life, enjoying some social activities, working much more capably in my home. I could see this concretely in better meal preparation, housekeeping and mental function. Then my rheumatologist decided that every six months was better for me. My last treatment was August. I am an angry mess. I don't know why I had to go through this again. Frankly, if there are long-term consequences to taking this medication more frequently, I am willing to trade them for the short-term life that it brings me.

I saw my psych guy this week. I can't call him a therapist. He is a drug manager. He gets a 30-minute update every three months and decides of my medications should be changed. No therapy involved. I realized after the visit that I must have sounded angry about everything - my health, my finances, my family, politics, injustices my daughter has recently suffered at school. I was a smiling, angry person.

I think what I was feeling was impotence. I am sick and I know it could have been avoided and I can't make the decisions that control that. I am in the typical patient position of being afraid to contradict the doctor too strongly, for fear that I will never get what I want and need. I need to be "good" and let him do his six-month experiment, and then be grateful that I am finally at the end of it this week. This sucks.

I have seen other patients in this position, and I encouraged them to go shopping. I may need to do the same. I have pushed others to treat the medical office like they treat a grocery store - if you feel that you are being mistreated, if your needs are not being met, if your questions are not answered - try somewhere else. Now I am looking at it with limited financial resources and the insurance least desired in physician offices, and trying to decide if I should do the same. I will speak to my doc first. We've always had good rapport, and I think a conversation is preferable to defecting without warning. I hope I won't have to shop. But I can't endure this again.


Saturday, January 8, 2011

Daddy Is Gone

Here I am, a month later, and again someone has died. This time it's my father, a precious, wonderful man who made his family the most important thing in his life. He raised six daughters and left each of us feeling our own special connection to him. In his later years he worked to strengthen those connections, calling us, telling us how important we were to him, always reminding us that he loved us. Even as he was dying, word from one of his daughters made him smile and his voice would get stronger: "Baby girl! My baby girl said that?" One of the last coherent things he told me was "All my children are great. All my children are great."

We marked his death in stages. We were women observing and discussing, and we noted every change and worried about its significance. There was his diminished appetite, and then dwindling intake, and finally refusal to eat. He lost weight, and his doctor confirmed that his chronic kidney failure had worsened significantly. Then he was unable to walk. In bed, he woke to acknowledge us and ask for water, ever appreciative of each sip that we gave him. "Nothing like cold water. That's some good water." Finally he slipped away, never really waking, no longer seeing us even when he opened his eyes.

He spent those last days at home, able to decide for himself when he would no longer seek medical help or go to the hospital. My heroic sister rearranged her life and made it possible for the parents to live in their home until they die. When I go there today his empty hospital bed will make me cry again.

I cry in spells. It hits me without warning, the blessing of his life, his 92 years, the pain of his leaving. I blow my nose and keep moving. He taught us everything about living and being useful, and nothing about sitting still and grieving.