What a beautiful morning! My backyard filled with birdsong early and the cats began clamoring to be let out, so I got up, made a latte, and joined everyone in the early sunshine. It’s too soon for flowers (except dandelions which are now in full bloom!), but the promise of summer is there for the taking. My trees are blooming and there are little buds where the leaves are getting ready to burst out. It’s hard to not get a little excited.
I took advantage of the light to get knitting pictures. I finished a shawl over the weekend. Here it is:
Now that I have one of the two shawls that I am working on finished I felt that it was OK to cast on the April 2015 sock. Here she is!
It was a really great week for me knitting-wise. I even coated myself with the best sunscreen on the market (SPF 60!!) and went out and planted my new roses. There were a lot of positives for the week except for… my scleroderma decided to kick my butt. My leg muscles now hurt, my knees have become swollen, red and warm to the touch, and I’m dizzy in the mornings. I have edema in my arms and legs. What is up with that!! My rheumatologist gave me some drug information to read (I get to pick which drug I prefer of two possibilities. This sounds pretty good, but during the week I realized that these are chemo drugs that I will be taking at a lower dose than cancer patients get. Bummer!) Still, I was having a happy week and being positive until one of my neighbors stopped by to talk to me while I was planting the roses, and he mentioned that if I would get out more often to exercise and get sunshine I would “get well”.
He meant to be encouraging. He’s really not all that bright; he doesn’t get “chronic”. I was polite, but once I got back into the house I was ready to rant. Don’t tell chronically ill people that they can “get well” if they just change their diet, get more exercise, meditate, get off gluten, take vitamins, or whatever else occurs to you. It’s almost like suggesting that it is their fault that they are sick. I know that while it is human nature to want people to “get well”; it is insensitive to suggest that this is within the power of the person who is dealing with a disabling, progressive and incurable disease.
On the other hand, I need to pick a drug. Once I calmed down I e-mailed the doctor to let him know that CellCept sounded pretty good. Some scleroderma patients in forums are claiming to be in remission. That sounds pretty good to me. The downside? No more sunshine for me until I’m off again.
Midnight gardening? I can do it!!
Yarn, Books & Roses 
The shawl is gorgeous, such lovely colours. I am so sorry you are struggling so at the moment, I too am photosensitive, it can take so little to make you flare. I too get frustrated with some well meaning comments, also when people take one look at me and tell me I’m looking well today, especially if it is on a bad day!! They don’t ask how I am but tell me how I am! i do hope the new meds help, I too am on a chemo type drug – methotrexate. It has helped me to reduce my steroids drastically and I haven’t had any nasty side effects at all. Take care. Gentle hugs!! Sharon x
Wow…nice color choice for the socks. Love the photo capture of the finished shawl. Sorry to hear about your frustrations with your health. Hang in there.
Thanks!! Today I feel much better and I am getting the sunshine while I can. 🙂
Methotrexate is the other drug that I was offered. Thanks for the feedback. I feel a little overwhelmed with adding this one to the Plaquinil. It’s hard to balance possible gains in the future against what is happening right now. If I could know for sure that I would develop heart complications there wouldn’t be any question about going onto the stronger drugs immediately. It is hard to not snap sometimes at people who are telling me how I am. You described exactly what is happening!!
I am so happy with the shawl! Glad that you like the colors.
Came across your blog recently. You make such lovely things and I enjoy reading your posts. I do want to thank you for your “rant” as you call it as it is a great reminder to watch our tongues. I am sorry you had a flare up and I hope the new medication you will be trying will be of great benefit to you.
Thanks for the kind words. 🙂 I feel a little guilty about the rant now as no one reading the blog has ever been insensitive to me. You all are my support network!!
Your socks are beautiful! Would love to know the pattern. Sorry to hear about your illness. Those who don’t struggle with Chronic medical issues don’t understand those who do unfortunately. They have the shake it off attitude without realizing it’s a monkey with a death grip that’s not going anywhere on our own attempts alone.
Those socks come from a book I have called “Knitting Socks with Handpainted Yarn”, and they are the Spot Check Sock. Here’s a link http://www.ravelry.com/patterns/library/spot-check-sock
Love the monkey analogy. Last week my monkey was very bad! This week is much better.
Let’s see…
1) The shawl is beautiful. You really did that yarn proud.
2) If you become a midnight gardener then I suggest checking some night blooming plants. Jasmine and Datura are the two that come to mind. Get you some flowers for the after-dark pollinators.
3) People don’t have conversations anymore. They talk. You were probably trying to make polite conversation and he was talking. Big difference and its one most people never get. The next time you see this guy coming at you, pull a teenager move: stick earbuds in your ears and stare intently at your phone until he goes away.
I love your feedback. Earbuds! That would be perfect!
Beautiful shawl. I love the yarn. My sister has an auto-immune disease (lupus). Exercise is fine but it doesn’t help the underlying problem. I guess you just have to think that your neighbor was trying to express concern and care!! Hope you feel better soon!
Thanks! It was cold here yesterday so I wore the shawl and it did make me happy. Happy colors do work!
Lupus! I’m sorry to hear that. My friend with lupus has been in a flare for years and she is struggling. Hope your sister is managing ok.
The neighbor has a small view of the world. Enough said.
I sighed with jealousy when I saw your beautiful shawl. (What are you, some sort of wool wizard??)
I grumped with sadness when I read about your symptoms.
I nodded with empathy when I read that you get to “pick” between two immunoregulators (what I prefer to call cancer drugs. For the record, I’ve been on Cellcept, it didn’t do anything horrid to me.).
And then I angry-laughed when I got to the part about the neighbor, because I knew EXACTLY where it was going to go. I got some flowers not too long ago, with a card that said “Hope you get better soon” and I ranted for about an hour, that I have a CHRONIC ILLNESS AND I’M NOT GOING TO GET BETTER. EVER.
They mean well, I tell myself. Of course, the road to hell, etc. etc.
Take care, sister. And hopefully the flare will resolve soon.
Would you believe that one of the cats threw up on that shawl overnight? Too bad I’m not a cat wizard!
Thank you so much for your comment. it means a lot to know that I’m not alone in this. You are right – I exactly responded the way that you did! When people aren’t telling me that they hope I get well soon they say something like “It will all be OK”. I just want to bomp them in the head like in the V-8 commercials! Good grief!
I am feeling much better this week. Yeah!!
Soooo glad you’re on the road to feeling better!! And yeah – cats have no taste whatsoever. If you figure out the cat wizardry, let me know!