The Scleroderma Chronicles: Safe House

You know, I kind of view myself as a happy camper. I have more things (ahem… knitting projects) going then I can get finished on any given day or week, books lined up to read, and a “to-do” list that I’m slowly working my way through. Hey, people, I fixed the loose tiles on my kitchen floor last week!! My cat MacKenzie is my constant sidekick throughout the day as I knit, work in the garden, read in bed, and even with me (underfoot, demanding cookies) while I’m cooking. Even on the bad days when I’m pretty much down for the count, I manage small victories. There is just one problem with this picture.

Look at these beautiful coneflowers I just added to the garden. I’m hoping to lure some butterflies into the yard. Every garden should have butterflies, don’t you think?

I just don’t fit in the world all that well anymore. In my home, living the life that I’ve created for myself, it is really easy to forget how much I have adapted to accommodate the limitations of my scleroderma, Sjogren’s, and fibromyalgia. Once I go anywhere else reality hits me hard. Every trip out of my house is going to come at a cost. Here are the worst of the offenders that will lay me low.

Air Conditioning I know that almost everyone in the world is grateful for air conditioning in the summertime, but for me it is a royal nightmare. The shock of walking into a refrigerated building on a hot summer day will trigger an immediate Raynaud’s attack. I pull on long sleeves and fingerless mitts as soon as I get into the building, but my lungs know what’s up and I have trouble breathing. The airflow makes my eyes burn; I’ve been reduced to wearing my sunglasses indoors to protect my eyes. Don’t even get me started on the refrigerated cases churning out cold air; you haven’t lived until you’ve had to pull up the hood of your sweatshirt and the sleeves down over your hands so you can score some butter and eggs.  If that wasn’t enough, there are also usually…

Scented Products Almost all buildings use scented cleaning products and sells additional items with scents. Candles. Lotions. Laundry soap. The scented bathrooms are a nightmare. If I’m not already in trouble with my breathing I will be if I have to walk down the laundry detergent aisle at the grocery store: I also start to itch and my face swells. Why do these chemicals even exist? They can’t be good for anyone!

Restaurants These are a special kind of hell for me. All the drinks come cold and with ice, and the entrees are served piping hot. There are other landmines that I need to avoid: salt, lactose, fiber.  I have to carefully select something that is very soft and that will behave itself in my gastroparesis stomach. I can’t have spicy food. I can’t eat fresh veggies. Actually, to be safe, some of this food should go through a blender… I actually once soaked a cut up sandwich in soup so I could eat it…

Walking I am trying really hard to meet my walking goals every day, but I stretch those steps out over the day. A trip to run errands can be just exhausting if I’m on my feet for a couple of hours at a time. I need to always carry water, be aware of the location of bathrooms, and have places where I can sit down if I need to.

Sunshine It makes me sick! Enough said.

Ready for another picture? These paper wasps are building a nest right on the edge of my deck! MacKenzie and I are not amused. Still, it kind of shows how the outside world is full of dangers…

Recently I had a tough talk with myself about pruning down my outings and being more strategic about how I expend my energy. I need fewer outings, and my destinations need to be closer to home. I need to live online. I need to in a safe environment as much as I can to manage my diseases.

My home is my safe house. I have no air conditioning and I minimize air flow. I keep the temperature in the mid 70’s in the day so that my joints and lungs will be happy. I cook all of my own food, I don’t own any salt at all, and everything that I drink is room temperature. Fruits and veggies go through the blender to become smoothies. Every product that comes into the house is scent free. I’m always close to a bathroom or a soft surface to crash onto for a quick recovery if I get dizzy. My stairs have wrought iron rails that I use effectively on bad joint days. Flourishing in my safe house I sometimes forget how sick I am because, well, I have fewer problems.

I planted this yarrow last year in a flowerbed that has killed almost everything planted into it. Not this yarrow!! The secret of gardening, and living with serious chronic illness, is to keep on trying new things, and to match your needs to your environment. Or, in my case, make your environment match your needs.

Tomorrow I have a doctor’s appointment so I listed up some symptoms and issues that I need to ask her about. It is quite a list now that I look at it, and it kind of underscores how chronic illness can trick you into thinking that things that would normally send you screaming into urgent care are “just another day of scleroderma.” Shortness of breath is an almost daily thing. When I glance into the mirror these days I sometimes notice that my face is blue. One hip keeps failing me; okay, I actually have to lift that leg to get into the car. My joints swell so much that I can’t sleep at night.

But I am good, here in my little safe house with my gardens and cat.

Tomorrow my doctor and I will attack some of these scleroderma/Sjogren’s issues. I kind of think that lung testing and a MRI of my hip are in the future, and that there may be follow-up with my pulmonologist. I’ve been gathering up my energy in preparation for these outings into a world that is dangerous for me, knowing that after each outing my garden swing, knitting and latest book will be waiting for me. With a room temperature ice tea.

And a cat!

It is good to have a safe house.

Barking Dog, Yowling Cat

When I was a girl my grandmother had a little phrase to describe someone who was acting crabby (little me, of course) as having gotten up “on the wrong side of the bed.” You know what she was talking about. A person being constantly irritated by a never-ending series of triggers.

Today I woke up pretty sore, crawled down the stairs to make my morning latte, and once I had pulled myself up the stairs and back into bed I found a post from another blogger, NothingButKnit, on my phone called Things That Are Bugging Me Right Now: A List. Oh. A list of all the things that are bugging me right now. Wow. Where do I start? There are so many things that bug me. Yippee, I can do this!!

NothingButKnit had only 4 things on the list. Gee. She is kind of a light weight, don’t you think? I mean, there are so many things that are bugging me at the moment it is impossible to prioritize them, but I can certainly try.  Ignoring all the things happening in politics and current events, which are their own exhausting list that force me to call or write my congressmen EVERY STINKING DAY, and excluding my trifecta of autoimmune diseases, here is my own list:

  • Robocalls. Seriously. How many times do they think I need to be informed that this is their last attempt to contact me about my insurance. Especially since it is several times a day. This is why nice people can’t turn on their phone ringer.
  • Food packaging that I can’t open without dragging in the tool box from the garage. Don’t laugh. I have half of the toolbox in my kitchen drawer at this point. The big stars are the rose pruners and a pipe wrench.
  • Hailstorms! I bought a new car last summer and I’m pretty nervous about hail. A few weeks ago I got caught in a storm that dumped 4″ of hail; I was pumping gas when it started and was able to stay under shelter. Last week there was golf ball-sized hail. I don’t even want to think about baseball-sized hail…

    I grabbed a picture early in the storm. Those stones are 1/2 inch across. 
  • Bindweed. This plant grows at virtually the speed of light, swallows rose bushes overnight, and never dies no matter what I do. Stop bugging me, bindweed!!
Sigh. I’ve resigned myself to pulling weeds for 30″ a day. It’s best in situations like these to just keep chipping away at the problem without looking at the big picture.
  • Yowling cats. Cats that belong to my neighbors wander into my yard, roll in the cat mint, and sleep in the best cat sleeping spots in the yard. They also stop by the ground-level windows to chat with MacKenzie. How sweet. Especially at 4am. I love the sound of hissing, smacks on glass and yowling in the morning, don’t you?

    MacKenzie also yowls every morning to let me know that he wants to go out into the garden for a nap. He loves his garden. I can’t let him out unless I can supervise him because of the stray cats and the dog next door, so he only gets to go out while I’m pulling weeds and watering. “Stop yowling!” I tell him every morning. “Let me out now!” MacKenzie yowls back. It’s like having a toddler again.
  • Barking dog. Ugh. The neighbor next to me got a sweet little puppy three summers ago that grew up into a territorial barking, growling, fence-charging Pitbull nightmare. After months of work she no longer goes berserk when I go into the yard, but if this dog sees a cat… it gets scary. The dog has chewed a hole in the fence that she can stick her face through. All the better to watch and bark at the cats that come visit my yard and MacKenzie. When she sees a cat she growls, body slams the fence and barks furiously while tearing at the hole in the fence.

This week I was outside pulling weeds with MacKenzie (between thunderstorms with the phone ringer off) when the dog suddenly saw him through the fence. Oh, oh. The dog got her face through the fence, the growling and barking commenced and I started running towards MacKenzie to see if I could shoo him away.

Nope. MacKenzie snapped, charged the fence from his side and went into total feline fury mode. In stunned amazement I watched my geriatric cat hiss, slash, and crash into the fence in a frenzy I’ve never witnessed before. I’m sure there was yowling, too. Every time the dog put her face through the hole, he let her have it again. Just as I was heading to get the hose the dog broke off the attack and it was over.

Mr. Victorious

The dog’s face was slashed in several places and she hurt herself trying to get more of her jaws through the hole. Luckily, she wasn’t able to get a good bite on the cat.  MacKenzie, two claws ripped off and toe pads damaged by hitting the fence, stalked off to take a nap in a nearby (unweeded) garden patch. The dog’s owners now keep her inside to PROTECT HER FROM MY CAT and they repaired the hole in the fence that very night.

Be like MacKenzie, I tell myself. Don’t let things bug you too much. Defend yourself and smack down the things that you can, and spend the rest of your time sleeping in the garden.

Excuse me, I must head out to pull some more weeds, then it is knitting time. Maybe I will listen to an audiobook with my new sound-cancelling headphones while I knit. Outside, on my swinging garden seat, with my roses.

Robocalls, hailstorms, weeds, barking dog and yowling cat, begone!!

The Scleroderma Chronicles: The Ankle Adventure

The last few weeks have been hard : rain, snow, an exceedingly badly behaved ankle, and all the fun of never-ending chronic complaints. Ugh! The weather fronts just kept rolling in, sending the air pressure swinging wildly and my breathing and joints into their own little crises. “Will it never end,” I asked my ankle and MacKenzie? “Nope!” said the ankle with a little sneer in its rotten little ankle voice. “Don’t count on it,” said MacKenzie as he squirmed deeper into the current knitting project with one paw extended, claw flashing, reaching for my yarn.

As you can guess, I’ve developed a nasty mood of my own.

There was a nice week with sunshine that made me and the ankle feel better: I got some yard work done and planted flowers. Then the weather turned on me and once again I was in bed, listening to audiobooks and knitting with my ankle propped up.

In the wee hours of Tuesday morning I woke up to the crack of breaking branches. Six inches of heavy spring snow (the latest storm this bad in 17 years in the Denver area) had done my tree in. No wonder my joints are cranky… even the tree gave up! I took this picture the next day after most of the snow had melted.

What is up with this ankle, you ask? Good question! Three weeks ago it suddenly developed a hard, red, and hot lump that radiated pain ruthlessly. The infection began spreading under my rhino-hide scleroderma skin. I was started on antibiotics, but the pain continued, the redness continued spreading around the outside of my ankle, and a dent in my leg appeared where the redness was. I chatted with a doctor online and she decided that I should be checked for cellulitis. Cellulitis?! Off to urgent care I went, and as soon as that doctor saw my ankle he ordered testing: another blood clot hunt and  x-rays to see if the bone was damaged. Limping and in pain, I headed off to get the testing done. As I drove home from the ultrasound a call came in with the results of the testing: a benign tumor was found, and I was being referred to a dermatologist for treatment.

It’s like they forgot about the cellulitis! “Where are my new antibiotics?” I asked MacKenzie when I got home.  MacKenzie just carried on for attention and cookies, so I made the appointment for the dermatologist to look at my ankle before returning to my knitting and propping the ankle back up. I made a little cage out of a box to put in my bed so I could sleep without the covers touching the ankle… “I have a tumor,” said the ankle in its nasty little voice.

The next day the redness and heat were a little better, but the pain and lump on my ankle remained. I resolved to head back to urgent care if I got worse, and carried on with my knitting. Tumor, whatever. I have scleroderma and I was betting that was what made the lump appear unusual in the ultrasound. I was pretty sure this was just another chapter in the scleroderma adventure.

Two days later I got in to see the dermatologist. Wow. Just wow. I am in love with this doctor. This is the doctor that I have been waiting for since my first diagnosis FIVE YEARS AGO!

Aside: I have been battling eczema for months. All of my doctors have seen my eczema face. Since I have noticed that a dose of ibuprofen (which I’m not supposed to take because of my iffy kidneys…) will give me 24-48 hours of happy joints with no fatigue or brain fog symptoms, and some eczema relief,  I have literally begged for some type of anti-inflammatory drug to help me. Even though I am taking drugs that are crushing my immune system unto submission, there is something else that I need. I have cried in my internist’s office. Evidently there isn’t anything that can be given to me that won’t hurt my kidneys…

This dermatologist entered the office, took one look at my swollen, red and itchy face, and said that this was unacceptable and she was going to put a stop to it. Then she said that she had looked at the ultrasound and that there wasn’t anything that worried her there: scleroderma had caused fibrotic tissue to form. Then she wondered out loud why they had forgotten that I had cellulitis? Then she prescribed antibiotics that are also anti-inflammatory along with an anti-inflammatory cream to get my eczema whipped into shape. I was told to email her in a couple of days if there wasn’t a dramatic improvement to my ankle and face because she was going to make more referrals to get to the bottom of the eczema with an allergy specialist. And that the ankle should continue to be watched.

Look at how well my flowers came through the snow storm! I put a plastic garbage bag over them to keep them warm propped up over a tomato cage. You’d never know that they had 6″ of snow dumped on them! Just like my flowers, I came through the ankle adventure storm looking pretty good!

By the next morning it was obvious that I was better. Much better. Within a week my face was clear and the eczema was gone. My ankle is also much better, the lump is gone, but it continues to ache and carry on when I walk. My brain fog is gone. Fatigue? What fatigue? It’s like I needed an anti-inflammatory antibiotic or something…

My new, most wonderful in the whole world dermatologist is going to maintain me on the antibiotic. I’ve been on this drug before so I’m not worried about my kidneys at all.

I’m sorry I said all those nasty things to you, ankle. All in all, you were a blessing in disguise.

But anytime you want to stop with the achy hurt, that would be fine!

MacKenzie Speaks: Nordiska Days

Hi. I’m MacKenzie.

Do you see this knitting? The Mother of Cats and I are working like crazy on her Nordiska sweater.

She got cranky at the beginning of the sweater when she decided that she didn’t like the look of the cables that are on the edges of the raglan sleeve increases. She kept checking the pattern, knitting, grumbling, eating cookies and fussing about the look of the cable. Not always stable, the Mother of Cats…

See how the cable edge isn’t clean on the right side? The Mother of Cats went crazy about this.

I think that she should have just gotten past this little design flaw and gotten me more cookies, but NO! She had to rip everything out and started again with her own idea of how to make the cable.

Here is her revised version of the cable. Glad that crisis was over as she really neglected me something awful while she was deciding whether to rip/not rip. Once she ripped out the sweater and started over (MAJOR CAT FUN!!) she was back to normal and paid much more attention to me. About time, Mother of Cats! She is just exhausting some days.
I settled down for a little nap while she worked her way through the boring upper body of the sweater…
Grabbed some more nap time while she got herself organized for doing the colorwork at the bottom of the sweater…
And really poured on the attention and support while she was knitting with different colors of yarn.

What can I say? I really like knitting that has more than one ball of yarn involved. The Mother of Cats keeps flipping the different colors back and forth, and then she moves the balls from one side to the other. I help her as much as I can and grab a little yarn chomp when the opportunity presents itself. Why does the Mother of Cats get so emotional about my help? I think that it means that she loves me, don’t you? But if she loves me, why does she keep cutting my claws short? I don’t understand why she doesn’t trust me more…

This is what our work looks like now. Pretty good, don’t you think?

There is no way that the Mother of Cats could have done such a good job without my help.

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

  • I’m still not sure if the issue with the edge of the cable was me or the pattern, but I have to say that I just love, love, love how this sweater is working up. I put my notes on the change I made to the shaping increases in my project notes in case you are interested.
  • I did take a picture of the whole sweater the way it looks right now.
Can you see the V-neck? It is there…
  • I am using a different dye lot of the light grey yarn at the bottom of the sweater; it is a little darker. I made the switch when I started the colorwork and plan to finish up the bottom ribbing with the darker color. I’m saving the lighter yarn to do the V-neck ribbing, which I will do next, and then to start the sleeves until I get them down to the colorwork that will allow me to switch to the darker grey.
  • The Estes Park Wool Market is in two weeks and I have hopes that this sweater will be done in time to wear there (and that it will be cold enough in early June for a sweater…). I’m on a deadline, people! Must knit faster!!

MacKenzie Speaks: The Sturgill Sweater is Done.

Hi. I’m MacKenzie.

Ornry cat snoozing on beautiful Fair Isle knitting.
I’ve been napping on the new sweater as much as possible.

The Mother of Cats has continued to knit like crazy on her new sweater. I’ve been giving her tons of help, but she doesn’t seem to appreciate me the way she should. She continues to freak out every single time that I put a claw on her sweater; she always grabs my paw and WON’T LET ME TOUCH THE SWEATER WITH MY PAWS!! I do not understand why she is acting this way. So selfish, the Mother of Cats!

Trimmed claws on the ornry cat that make him knitting friendly.
Look at what she did to me!!

The Mother of Cats is so unstable and difficult to work with. After I snagged her knitting only a couple of times she grabbed me and CUT MY NAILS!!! Can you see the damage in the picture?

Ornry cat snoozing on knitting with his paws on the work.
After my nails were cut she started letting me sleep on her knitting. Ah. So much better. This sweater is so, so comfy.
Finished sweater on the Mother of Cats.
Tonight she finished the sweater and put it on. NOOO!!! What will I sleep on now?

The Mother of Cats pulled out a lot of yarn this evening and started knitting on new projects, lots of new projects, lots of new yarns. She let me help and I got to chomp at least three different colors. One has cashmere… my favorite!! Wait until I get to show that yarn off.

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

  • The sweater is Sturgill by Caitlin Hunter. My project notes on Ravelry are here.
  • I finished the sleeves before completing the body as I was worried about running out of yarn and was considering options. I completed only a couple of inches of sleeve ribbing and paced the stitches on holders so I could match to the body of the sweater later (see below).
  • The sweater is knit with DK weight yarn, but I ran out of the main color (dark grey) before I finished the body of the sweater. I had a skein of fingering in the same colorway (Man in Black by Stitch Together) so I blended that yarn held doubled with the DK by alternating rows for several rounds and then completed the body with the doubled fingering. It was a great match.
Details of yarn in the sleeve ribbing.
Here is a close-up of the ribbing showing the doubled fingering mixed with the DK weight yarn. Don’t those colors look good?! All the ribbing on the body and most of the sleeve ribbing was done with the doubled fingering yarn. 
  • Once the body of the sweater was completed I did the same blending trick with the sleeve ribbing and then added another 4″ to the sleeve ribbing to get a total of 6″ ribbing. Sleeves fit perfect!
  • After wet blocking the two weights of yarn look identical in the sweater. Win!
  • MacKenzie has already gotten over the cutting of his claws since it allowed him to plant himself constantly on my knitting…
Spoiled and ornry cat sleeping on sweater.
As far as MacKenzie is concerned the new sweater is a bed for him…
  • Now that I’m done with all of my current WIPs it is time to go crazy and cast on lots of new projects. Wait until I can show off the next wave of knitted yumminess.

MacKenzie Speaks: Meet Little Miss Pitty-Pat

Hi. I’m MacKenzie.

Grumpy cat gazing at the viewer wondering why he can't have a mouse.
 Do I look happy to you? 

The Mother of Cats spends all of her time knitting and knitting on her new sweater, and she will NOT let me play with it the way she should!! Every time I put a paw on it she grabs it and moves it OFF THE SWEATER! She won’t even let me touch it. Sure, she gives me the ball of yarn and little scraps to play with… who does she think she is dealing with here? I want the sweater!!! Why are my needs always ignored!! I deserve all of the attention, all of the time!!

Curious and willful cat examining cage.
Wait. What is this?
Hamster ignoring cat and eating a carrot.
The Mother of Cats got me a mouse!! A real mouse!! My very own mouse!!!

The Mother of Cats says that this is a hamster and that it is not a mouse, but I don’t care. THIS IS MY MOUSE!!! Finally I have a little friend to hang out with me that belongs just to me. I talked it over with the hamster-mouse and we have decided that her name is Little Miss Pitty-Pat. It’s just an accident that her name rhymes with “Kitty-Cat”.

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

Cat
my sweet boy

MacKenzie has never really recovered from the loss of Yellow Boy last summer. It has been clear that he needs a companion, but he is too old for a kitten, too savvy to have a bird, and not at all interested in fish. This hamster, selected after consultation with employees of my local PetSmart, is a long-haired Syrian hamster, a very calm and large breed. She comes right up to the wire to check out the cat and runs in her wheel endlessly while MacKenzie watches her: this hamster is so calm she ran in her wheel all the way home in the car! MacKenzie has made no effort to smack at the hamster through the wire or to get into the cage; she is just great cat company and entertainment for him. He checks on her several times a night while she is most active.

Here’s the big change in my life: I’m sleeping great with the new pet in the house! MacKenzie doesn’t wake me up at night since the hamster came home, and the noise of the hamster running her wheel is like “white noise” helping me sleep. MacKenzie is already eating more food at mealtime and seems calmer. Who knew we needed a hamster this badly!!

Waiting for Snowmageddon

I woke up this morning to a warm, sunny day and a cell phone full of alerts. Well, look at that! A weather alert had been declared overnight for my area.

The knitworthy niece showing off her fabulous mitts!!
But in sunny California my KNITWORTHY niece is rocking her new mitts that I made for her. Did you ever see a happier recipient of a knitted item? She posted the picture to Facebook last night and my phone was also full of reactions to her picture. That’s what I’m talking about! Knitworthy.

The panic was in full swing when I looked at my phone. The schools were already closed for tomorrow. The city was advising that I get essential supplies and that I should plan on staying home tomorrow. There was a note about taking care of animals and checking the furnace. The county sent a message warning that they would try to keep “snow route” roads open, but they couldn’t make any guarantees.  By the afternoon the National Weather Service had put out a blizzard warning, and by this evening the weather forecasters were talking about a possible “bomb cyclone“.

Cat face.
Cats do not like snow!! They aren’t really sure what “bomb cyclones” are, but they can’t be good. Cats dislike “bomb cyclones” and blizzards even more than they dislike snow.

There have been several storms and a lot of avalanches this month, some of which came across the major interstate freeway through the mountains. Here in Colorado we usually get snow in March (it is the snowiest month for us), but this is ridiculous!

All right then… not a moment to spare! I sprang into action and hit the road. Essentials for the storm include: gas for the car, groceries (including salmon and avocadoes… I believe in civilized snow emergencies!), a blood draw at Kaiser, and books from the library. I grabbed a Starbucks latte for a treat and headed home to get shovels and other gear ready for the storm. I now have yummy food, lots of projects, and good books to keep me company. Bring it on, Mother Nature, I am ready to go. MacKenzie, not so much, but that is the way it is for cats, I’m afraid.

Happy cat wearing knitted project.
MacKenzie and I have been working on my Sturgill sweater while watching the weather reports, and it is looking good!
Author wearing sweater in progress.
See. Looking good! I’ve taken the body off the needles and am knitting the sleeves right now because… yarn chicken worries. Once the sleeves are done I can blend the remaining yarn artfully to get the length I want.
Moon shining through a tree.
Tonight all is still calm and the storm is still just a dream waiting to happen…

I’m knitting like crazy on the sweater this evening and have several shows queued up for me on the DVR. I’m thinking that I’m in for a few days of prime knitting weather.

Yippee!

You all be safe out there!

PS: Did you wonder what I had to do with the shovel to get it ready for the snowstorm? Why, bring it inside, of course, so it would be warm when I spray it with Pam later for no-stick snow shoveling. We knitters are canny about spring snow storms…