Yesterday while the Mother of Cats was driving around in the car (she went to the yarn store… she tried to sneak in some yarn, but I saw her and I’m absolutely certain that she has SLIPPED again…) she glanced at the dash and noticed that it was 101° F outside. I believe it. It is so hot I can’t go outside without burning my paws, and I barely have enough energy to put a claw into the Mother of Cats knitting. Barely. It is so much effort, but when you are a cat of superior personality and strength of will, you persevere and grab yarn anyway. It shows character in the face of adversity…
The Mother of Cats CUT MY CLAWS again!!!
I don’t know why she hates me so much. I’m just trying to do my part in this endless fade project that just keeps going and going and going… Seriously, I don’t know when this project is going to get done. It just keeps getting bigger and hotter and the Mother of Cats whaps me with it every time she turns it. It would be different if she would let me sleep on it, but nope. The Mother of Cats never lets me have fun!!
The Mother of Cats and I do go out into the garden in the evenings so she can water and I can look for bugs and squirrels. It is so hot outside that even the bugs are hiding.
Since we are hanging out in the house during the afternoons I think that the Mother of Cats and I may get the shawl done in the next week or so. I can’t wait to show it off. The Mother of Cats could never get things like this done without my help.
This shawl uses 6 skeins of yarn, which explains why I am still knitting and knitting on it. This morning I started the 4th color used at the bottom of the shawl, so the end is now in sight. Yay! This weekend the heat should break, the afternoon storms will return, and my Fade will be finally finished. Stay tuned for the final update!
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.
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.
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.
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.
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 ThingsThat 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…
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!!
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?
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.
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 weather has turned nice and the Mother of Cats and I have been busy working in the yard, knitting lots of projects, and getting yummy things cooked in the kitchen. I love hanging out in the kitchen with the Mother of Cats since she gives me extra attention, cookies, and even plates of tuna. Sometimes the Mother of Cat can be fun. Sometimes.
I have been so busy that I hardly know what to do with myself. Now that I am able to get back into the yard there is a lot for me to do. I need to inspect every corner of the yard, nap in all of my favorite places, make sure that all the other cats in the neighborhood understand that I am back (ahem… I do my business in all the right places…), and then there are the plants that I like to chomp. And bugs! The moths are back and every night I have another epic moth hunt that goes on for hours. The Mother of Cats hates the moths…
Unfortunately, the Mother of Cats doesn’t let me stay outside as much as I would like. Always, we have to go back in before I want to. The Mother of Cats just doesn’t place my needs first like she should. She can be so MEAN to me! Okay, there are some thunderstorms in the afternoons… If she loved me she would make them go away so I could stay outside!! Why can’t the Mother of Cats understand how important the outside is?
The Mother of Cats spent a few days working on the new shawl (a What the Fade?! shawl by Andrea Mowry) and then became completely distracted and started working on some arm warmers to match the socks that she made not that long ago. I can be reasonable… I helped her knit those, too. After only two days of knitting in bed listening to an audiobook she was able to get one of the arm warmers done solely due to my devoted attention. Look at how nice it looks!!
As you can see, I am just terrifically busy. Taking care of the Mother of Cats and the yard is kind of a full time job. Then there is my mouse. Do you remember how badly I needed a mouse? The Mother of Cats bought me a mouse (she says it is a hamster… whatever!) a few months ago and last week she moved her downstairs to be with us in the evenings while we knit.
I can’t believe how much I have to do every day.
I am such a good boy.
Can I have some cookies now?
Notes from the Mother of Cats:
My neighbors (I have the best neighbors in the world!) have been collaborating with me to spruce up our yards. Mulch has been spread on the side yard, a new flower bed started, and I’m even moving bricks to extend the patio/deck area in the back (we all had a brick swap!). Wait until MacKenzie sees the new patio umbrella I bought this weekend!
The downside of all this yard work is that sunshine is not kind to people with autoimmune diseases. After a week of bravely tackling yard projects in the late afternoons the flare arrived anyway and I had to hole up in bed for a few days being kind to myself. Not wanting to manipulate multiple balls of yarn with MacKenzie sleeping on my legs I switched over to the small arm warmers. The project notes for them are here. They are based on the No. 5 Union Street socks that I made earlier this spring.
I have several other projects going right now, but the major one is the What the Fade?! shawl that I am working on in shades of rusts. My project notes are here.
I’m still deep in my flare, but I am knitting and listening to audiobooks like crazy and eating comfort food ; I am still in charge here, you bad boy autoimmune things!! MacKenzie isn’t happy about not being in the yard all day, but his issue is really with scleroderma, not me. Somehow he isn’t grasping the finer details of the situation… What can I expect? He is a cat. I bossy, self-centered cat who drips entitlement like none other. Seriously, I couldn’t function in a flare without this furry monster at my side. 🙂
It looks like we are going to have an epic miller moth season; every time I open the door to the garage another moth flies in. Great. MacKenzie is specializing in 1am moth hunts these days…
It’s been a long time since I’ve talked about the garden. Over the last couple of years, forced indoors because of my scleroderma, I have had to settle for some potted plants out on the back porch. My favorites among these plants have been surviving in the garage during cold snaps and snowstorms, but we have finally reached a point where the cold is too prolonged for that strategy to work any longer. Time for them to come indoors! I gave them all a little spray of neem oil to kill hitchhiking pests, dragged them inside, and put them near windows. Obviously that wouldn’t be enough light for the little rose bushes. You know, the kind that you buy at the grocery store when you meant to just buy bread, milk, and ice cream. I have several pots of those roses and those babies were growing in bright sunshine all summer! Last week I headed on over to my favorite garden center to see what I could do to help my floral buddies survive over the winter in the house.
While I was unpacking the grow light and putting it into the stand I noticed that the light fixture itself was designed to also be attached below ceilings, shelves, cupboards, or some other solid feature. There are two little metal brackets and two screws involved. Hey, this is something I can do. I have more plants needing light! I headed back to the garden center.
I’m pleased with how the plants are managing with the new light, but there is an obvious readjustment going on with the little mini-roses. They are undergoing a transition with their leaves…
I’m pruning the little bushes down to a lower height as they finish up with the last of the summer blooms and the old leaves drop off. There is so much new growth on the stems I’m pretty sure they are going to be fine.
It looks like I’m in business. Winter roses. I may not be able to get outside all that much now, but with the new full spectrum grow lights and the indoor roses it’s like I’ve brought the garden indoors.
Once again, I am knitting in my garden surrounded by my roses.
The Mother of Cats and I are still staying inside every day because of the heat. You’d think that she would devote herself to helping me cope with the unacceptable weather, wouldn’t you? I mean, look at this fur! Nope. She just turned on a ceiling fan for me and went about her business. I’m not sure she really loves me… She spends more time babying her plants outside then she does me. How could I come in second to a rose? Ridiculous!!
When she isn’t outside ignoring me and feeding her plants she spends her time downstairs knitting away on new projects. She started two new ones this week, and would you believe that she started another Tegna sweater?
She took a break from the sweater over the weekend and made a sock. So cool. So perfect to sleep in my bed with me. Did she put cat nip into it and let me have it? Nope! I’ve discussed this before, but with the Mother of Cats it is always NOPE!!
So that was the whole week. She did go off and leave us from time to time, and there was some reading, but whatever. What is important is that she spends her time with me.
I’m such a good boy. Do you see how much I am helping the Mother of Cats?
Can I have some cooking now?
Notes from the Mother of Cats:
I bought this cotton/linen yarn to make a cute lacy summer top but I was not able to get the gauge that I needed, and because of the lace it was going to be hard to adapt the pattern, and knitting tightly on small needles hurt my hands. Total fail. The solution? Another Tegna! I am so happy with the first one I knit and I think that this one will be a nice layering piece as fall arrives with the longer sleeves I’m going to put on it. My Ravelry notes are here.
Poor garden. Even though the heat goes on it is more humid now and plants are doing better. I feed everything in the hopes that roses will bloom again; so far only the tea roses in pots are responding well. That hydrangea is in a pot as I can’t decide where to plant it. I think that it is going to need shade at least part of the day. Poor thing; it really got fried in the first location I tried out. I’m wondering if it can winter indoors in the pot with a grow light on it. Hmmm…
The socks are another of the vanilla sock pattern Dave. I’m having fun playing with the colors. My Ravelry project notes are here.
Today is World Scleroderma Day. Gosh, there should be a huge post today that pulls together my whole monthly effort… nope. That sounds just exhausting, doesn’t it. How about we just head out to my garden to see what’s up. After that I can show you the big picture on what I’ve been doing all month in “Science and the Scleroderma Girl”.
Getting into the garden has been difficult for me since the sun and I are not friends. Last week I went out for a couple of hours to weed in the morning in the shade, and yep… I developed a rash on my arms and then the flare arrived. I was holed up for days getting over that little misadventure. After I recovered I tried out weeding after dark. Gosh, I’ve had more fun moping floors. It just isn’t the same if you can’t actual see what you are doing. I wonder why that is?
There are leggings too to provide complete sunblock for the surf enthusiast, but that probably is more than I need to tend to the roses. I usually get wet while I’m watering in the evenings, and once again this baby should handle it fine. I am so set up for the rest of the summer!
Let’s see what is still alive in the garden after a week of amazing, blistering heat. Yesterday it was 105°F; these plants are no longer happy.
This weekend will be cooler, and I gave all the plants a good watering this evening so that they will recover over the next few days. Poor plants. Life has been tough for the last couple of weeks: heavy rain for a week followed by triple digit temperatures and blazing sunlight.
Now that we are leaving the garden here is my Scleroderma Month of June:
Once you feel like you understand the design of experiments it is time to hunt for answers to your own questions in published research studies. I explained how to do this and shared some of my favorite links in this post.
The reason I talked about research and the tools you need to look at what is published out there is because I had to make more hard choices about my own treatment. Having more information helped me with these decisions.
Closing down the show was AP Therapy and leaky gut. I’ve been informed that there wasn’t enough venom here for a rant, but I did try.
What I didn’t put into this was a lot of actual information about what scleroderma is. Oops. This post that I wrote for Rare Disease Day should cover that glaring omission.
So, this is World Scleroderma Day. All over the world people have posted the pictures of their smiles in an effort to make an invisible, but pretty darn serious, disease have a face. My smiling face is above: a little crooked these days, my lips have gotten too thick to smile right, and my hair is falling out, but I am doing well. Every day brings a new challenge, but still, with good luck, humor and a touch of science, I rise.