Uncategorized – Yarn, Books & Roses

The Saturday Update: Weeks 37 and 38, 2021

Finally, finally the leaves are starting to turn in earnest and there is a rustling sound when they move in the breeze. The sky is now a gentle blue in the afternoon and there is a subtle change in the quality of sunlight as the sun edges further to the south each day; thunderstorms are a distant memory as the clouds adopt more benign shapes. I’ve taken to sitting outside in evenings to work on the computer listening to crickets while the cats romp in the house. The potted plants continue to show off late blooms but there isn’t much new growth appearing in the gardens. The baby bunny of the summer now looks all grown up, and there are low-flying flocks of geese passing over my house daily.

Fall has finally arrived!

Cats love fall! These two are rolling in personality these days.

Knitting

I’ve been knitting like crazy lately. Sharon from Security (Casapinka) took a week off from the Snark-O-Meter and I was left at loose ends: I cast on a new Rock It Tee and started knitting on that. I was really making great headway until… somewhere halfway down the body… I got bored. All that stockinette. Ugh. I began to day dream about other things that I could knit and somehow I decided that I needed to knit another little kitty to keep my knitted MacKenzie doppelganger company. You remember, my MacKnitzie that was created to look just like my personality (ahem… attitude) loaded cat that died just as Covid-19 appeared on the horizon. I still miss MacKenzie, and while I was waiting for the next clues of the Snark-O-Meter to drop, I couldn’t help looking at MacKnitzie on my shelf and wanting to make him a little friend.

Doesn’t MacKnitzie look like he is smiling?

I knitted up an Itty Bitty Kitty to sit with MacKnitzie on the shelf in my bedroom. I was thinking that the project would only take a day or two, but I had forgotten how fiddly the work could be if you wanted the final knitted cat to look realistic. I also was struggling with my old friend fatigue all last week so only a little got done at a time, but I’m really happy with the final product.

This little kitty is so fun when completed. It is designed to stand up balanced on the tail and two hind feet.

Now that I am done with the kitty for MacKnitzie I’ve gone back to knitting on the Snark-O-Meter shawl and I’m really anxious to get it done. Look at how well those classic colors go with the cats! (snark, people!!) Seriously, the cats are all over me while I’m knitting these days. Maybe they think that I should be making them cat toys or little itty bitty versions of them? Hmm… maybe I should be making little itty versions of Hannah and Mateo… or maybe a knitted mouse.

I’m now in clue 5, and since clue 6 dropped this morning I should be finishing up in just a few days. I can’t wait to show this finished project off as it just keeps getting better and better as I knit along.

Books

I am seriously reading lots of science fiction these days.

Through the fatigue of the last week I have just holed up and read lots of space opera. Today, while watering the lawns, I started to reflect on why I’m so immersed in space opera of all things.

I was in a book group that read lots of books that were suspenseful, gothic creations about women trapped in situations that were not of their own making, menaced by outside forces and individuals, and abandoned or betrayed by the individuals and/or agencies that should have protected them. Sometimes the women manage to escape their menacing entrapment, but just as often they come to a bad end. It’s a whole genre, and these books can be really popular, but I suddenly had an epiphany; these are not good books for a person struggling with a chronic, progressive disease. Okay, I’m not sure that these books are good for anyone, but they certainly weren’t good for me as I was struggling to get a diagnosis and help with my whole blue-lipped, panting for air, trying to not faint deal that I had going on. Doctors just kept reassuring me that I was fine; I was being dismissed, subjected to gaslighting, and unable to control my own situation just like some of the women in these books.

Oops. Time for a change in reading matter, I decided. I quit the reading group.

This month I am somewhere in the process of having my heart issues defined and a plan of action created. Things aren’t clear: I definitely have a pretty significant cardiac shunt, but they haven’t found it yet. They have a really good understanding of the direction of disruptive blood flow while I’m at rest, but they are trying to determine exactly what is happening while I’m up and active. I did a walk test last week (um… not sure I passed that with flying colors…) and will need to do a exercise/stress/echocardiogram test next week. This is all big stakes for me as it will determine my treatment plan going down the road…

Which brings me back to space opera. These books are all about desperate times and a scrappy group of individuals led by a strong and determined woman who is going to figure out what is happening and will eventually put things right!! The crews deal with every single emergency with creative, reality-based responses (well, using science fiction reality, that is) and refuse to ever, ever give up. They lose space ships, battles, body parts, and sometimes the future that they had envisioned, but they always, always make it through to the end with grit, determination, the support of their team, and the innovative use of technology. They are action-oriented and fearless. What ever is coming their way, they face it down, make decisions, and get to work with what they have. They are pretty much my heroes these days.

Be like Murderbot, I tell myself. If it gets bad, don’t forget to bring your blaster to the appointment. In this case, my blaster is a good understanding of my past test results and the diagnosis that they are considering, but you get the idea.

Space opera. I highly recommend it to anyone seeking resiliency in the face of an oncoming challenge of epic proportion.

Have a good week, everyone.

Read a little, knit a little, and garden like your heart can’t live without it.

The Saturday Update: Week 25

The last weekend in June and it is raining and cold outside. June, June, June… when are you going to get with the program? The calendar has finally tipped over into summer and you deliver a weekend that makes me wonder if I am going to have to turn the furnace on again? Good grief!!

The week produced a baby bunny that is hanging out on one side of my yard under a large shrub and in one of my rather wilderness-like gardens. What a cutie he is!! He shows up every day around dinner time as some sweet entertainment while I’m eating out on the deck.

He really is pretty small still; this shot gives you a better idea of his size. That shrub seems to be where he’s hanging out.

I don’t have any pictures of the garden flowers because they are just drenched at the moment, but the lawn is really happy to get all of this water after a couple of weeks in parching heat; I hope to get fertilizer and soil conditioner onto the back lawn during a lull in the rain early next week. This actually is a nice break for the plants. Hope my little bunny baby is doing okay with all of the wet.

Knitting

The big accomplishment of the week was finishing up the Mando mitts and getting them mailed off to my Knitworthy Niece in California. These were really a somewhat challenging knit, but the final product totally makes it worth the effort.

The mitts are knitted from a chart, which I prefer, so that part was good. The colorwork issues emerged early on as I had to figure out how to manage 3 or 4 different colors of yarn as I worked the mitts. I finally carried two colors in my left hand, twisting them as I knitted, and holding the third color in my right. I did catch floats and twisted yarn as I could, and still decided to just duplicate some of the details after the mitts were finished. The blue detailing on Mando’s helmet was added after the knitting was over as was the little blue object that Grogu is holding in his right hand. Whew! Then there was the issue of all the ends…

There were lots of loose ends to weave in after knitting. Good thing I had such quality help!

It isn’t obvious in the pictures, but the tips of the fingers used a new bind off for me that blends well with reverse stockinette and is nice and stretchy called Icelandic bind off. Perfect. Who wants to put in all that work to have fingers that are too tight, right? I’m thinking that I might use this bind off with garter stitch edges on sweaters and maybe on the cuffs of arm warmers.

I cleaned out the stash (again) this week after the mitts left on their journey west to the Great State of California (the land of my birth) and put together several kits of printed out patterns with the yarn to make the project. There are at least six sweaters waiting for me to get to them. I am down to only two unfinished projects so I pulled out my hibernating Ranunculus and got back to work on it. There is also a pair of socks to finish and then it will be all sweater knitting, all the time for awhile. (Did you want a picture of my ranunculus project? It is pouring rain out there, people!!! Maybe next week I will have something amazing to show off.)

Books

There isn’t all that much reading going on at the moment, but I did wander into a bookstore and looked at the books on the sale table. The first book was about a person who finds a special book that opens a new world to them. Then the next book I picked up was about a young person who found a transformative book. Then the third book was about… a book. Kismet, obviously. I bought all three books.

Have a great week everyone.

Read a little, knit a little, and garden like your heart can’t live without it.

Enough is Enough

Life has been really challenging for the last two weeks, and yesterday was perhaps the worst. My son and I drove south on the Boulder turnpike yesterday afternoon, returning a borrowed car to the owner. An emergency vehicle, lights flashing, screamed past us on the turnpike, heading north towards Boulder.

A mass shooting in a grocery store in Boulder, Colorado, was underway. The grocery store is one that my son and I know well as it is situated a few blocks from where he used to live and is across the parking lot from the store where I learned how to knit and spin. I can’t count the number of times I crowded into the Starbucks shop in that store with my friends.

Boulder, Colorado is the home of the University of Colorado, and houses thousands of students and their educators. Boulder is a liberal city that enacted a law restricting people from possessing or selling an assault weapon within city limits three years ago; about 10 days ago that restriction was removed in a court ruling.

Boulder is the city that I moved to from California as a young wife and mother. I learned how to spin, dye, and weave fiber in Boulder. I bought my first fleece there and stopped every single year when I headed up to the Estes Park Wool Market.

I returned like a migrating bird every summer to Boulder to take continuing education classes there to maintain my Colorado teaching credentials. I camped with my friends at the high alpine lab facility in the mountains above Boulder and spent a summer there doing field research. My favorite sushi restaurant is in Boulder. My heart will always be in Boulder.

Today my heart is broken.

This is the third mass shooting to occur in my state of Colorado that I have an actual connection to. Other mass shootings have happened that I am more remotely associated with, but they are linked to other members of my family.

I wrote about my experience with and sorrow about the shooting at Columbine High School years ago. Then I wrote about my grief and outrage in the aftermath of the theater shooting where I live now, Aurora, Colorado. Today I am once again writing in the aftermath of an unbearable loss of life because someone with a weapon designed for war used it on other American citizens.

Ten people died yesterday, one of them the first police officer to respond to the shooting. He was the father of 7 children. In spite of his efforts, 9 other people are dead.

I once asked a class of students if they had ever seen someone who had been shot by a gun. Almost a third of them had.

An entire generation of students has now grown up practicing armed intruder drills and fearing for their safety in public places.

I refuse to believe that there is nothing that can be done to stop this.

I am angry. I have once again written all of my congressmen asking for reasonable gun control. I am ready to take to the streets.

Anyone care to join me?

I’m that lady with the purple cane and some fire in her eyes.

Enough is enough.

The Saturday Update: Weeks 41 and 42

Crazy days continue with no end in sight. Covid-19 cases are escalating here in my state and the county just reinstated restrictions but we aren’t in a full lockdown yet. My neighbors complain about wildlife in their yards: the mountain lion seems to have moved on, but now there has been an outbreak of raccoons. Please, 2020, don’t bring me a raccoon, unless, of course, it is a knitted one! The fires in the mountains west of me exploded into life again this week and another serious fire broke out today just north of Boulder, Colorado, which means there are three fires sending their smoke directly into the Denver Metro area.

This wall of smoke rolled into the Denver Metro area yesterday afternoon. Tonight the smoke plume will be worse as a coming cold front pushes the smoke down over us.

The evacuations and road closures are going on while I write this, and I do hope that people stay safe and that the firefighters are getting all of the support that they need. Needless to say I am holed up inside because of the smoke and neglecting my garden something awful. The knitting has been pretty darn productive, however!! I got two big projects done this week.

I finished both The Secret Handshake MKAL (that’s the cowl on the right that Hannah has been ~~yarn chomping~~ helping me with every evening) and the Age of Gold shawl this week. That’s the way it always seems to work for me and multiple projects: after weeks and weeks of knitting on several projects at once they start to all finished within days of each other. I still have several projects still going, but I’m starting to think that they will be finishing up before the end of the month too.

So, can you see the colors in the shawl? The yarn is Mad Tosh sock yarn dyed in the colorway “Rocky Mountain Colorado” that just pulls together all the colors of our trees changing in the mountains that are now, sadly, smoke shrouded from the wildfires. The colors are just perfect and they just make me happy. Did you pick up on that lace border?

Isn’t that the sweetest lace border ever? It’s the first time I’ve been told to purl 15 strands of yarn together, but after a couple of attempts I had caught on and the final product was so worth the effort. The lace is disappointing until you wet block it with the points pinned; then you understand what was going on with all of the double yarn overs and crazy purling of two stitches together through the back loops… learning new things is good. Warning: this is a project that demands lace point needles!

I need to let you know how much I have enjoyed The Secret Handshake. This cowl was another project designed by Sharon from Security (Casapinka‘s cat and tuna-starved, underpaid employee who also engages in spy activities on the side) that was launched in response to ~~whining protests from~~ popular demand by the groups on Facebook and Ravelry. I belong to the Facebook group (called “The Sharon Show“) and I have never been in such a positive, inclusive, supportive group before. I just love these people!! I also love Sharon (please, Sharon, no citation for me because I was very compliant about weaving in my loose ends…), who has bought a little camper online that will be fixed up to be a total pink kitty wonder that I hope to see someday when it travels to a city (or glamping ground) near me. This second MKAL is now over, but there are people who have just arrived in the group who have just bought the yarn and pattern for the first MKAL and they are all welcomed with open arms and endless encouragement and advice. How cool is that?

A you can see I am slowly becoming more comfortable with the new WordPress editor, but I’m still on a big learning curve. I know that most of you are in the same boat: are we having fun yet? I am still searching to find the way to put in tags and categories… I have lots of ideas for blog posts swirling in my head, so I should be posting more frequently in the coming weeks.. Seriously. I want to write about all the things that annoy me since Karen posted a quiz about that this week. I am going crazy planning out a couple of new sweaters. I am on a yarn buying spree right now; why are all the yarns that I am buying blue? Why did I only buy two skeins of each color? What color socks should I cast on next? And while I am thinking about it, why are all the books that I am reading right now blue?

I’m reading Treachery right now, and completed the other two books over the last two weeks. See, blue books. Two of them are murder mysteries, and the other is a science fiction that is hard to stick into one genre. All three of them have held my attention and I find myself reading long into the wee hours of the morning as… I find myself on a train, traveling down a mountain in a snowstorm on the way to diplomacy, treachery, a kidnapping, and the slow evolution of two species/societies as a new ruler grows into his own. (Divergence) On another early morning I find myself traveling through the streets of Paris, learning history, architecture, and lord knows what else (archives, engineering, financial markets and magnets?!) as Chief Inspector Gamache gets to the bottom of a conspiracy, issues within his family, tragedies, professional betrayals, and murder. (All The Devils Are Here) Right now I am roaming the streets of Plymouth, England in the 16th century getting to the bottom of a series of murders and other matters of intrigue that need to be cleared up before Sir Francis Drake can leave on his next voyage to wreak havoc on the Spanish. Also there is a book that can overturn the entire history of the Christian church… (Treachery).

Great reads, every single one of these. I have two more books lined up waiting for me on the Kindle.

They are also blue…

Have a great week, everyone!!

Read a little, knit a little, and garden like your heart can’t live without it.

Update: Another fire erupted in our foothills today making a total of 5 fires blazing away and sending smoke east while people scramble to evacuate safely, roads are closed, and firefighting measures employed. It is a really tough time in Colorado right now: keep us in your thoughts.

The Saturday Update: Week 40

Okay, okay, I’m late again. The new WordPress editor is kicking my butt, it is extremely smoky outside, and I was busy with errands for much of the week so I didn’t get as much done as I wanted. I kept telling myself that I would post when I got a little more progress done on a project so that it would make a nice picture. Just a little more, I would tell myself…

Anyway, here I am, late again but with some progress to show off. Look at what I got done!!

I finished this Itty Bitty Kitty for my cousin’s birthday present (late, of course) using left over yarn from my several over knitted cats.

Right now he is hanging out with MacKnitzie. The pattern is Itty Bitty Kitty by Claire Garland.

The other knitting that I’ve been busy with is the Secret Handshake MKAL by Sharon from Security with a little help from Casapinka. I am so happy with what is happening with the cowl that is being produced in 4 colors. I picked a speckled, a variegated, and two solid yarns for my cowl after digging around in the stash. I’m pretty happy with what I found:

I pulled yarn from the stash and ended up with these four. I was worried about how it all would go together so I paid careful attention to Sharon’s directions about when to use the speckled yarn, and when a solid would work well, and ended up with…

this!! This is Clue 1 finished with all four yarns in it. I’m so happy with how the colors are coming together. Now that I have finally finished the (still unmailed) Itty Bitty Kitty I can start on Clue 2. What a cool cowl this is going to be!!

So, what else is going on? Since I’m still struggling with this new editor (which I think will eventually be a wonderful thing to use as soon as I’m through the learning curve…) I’m just going to throw up a couple of other pictures. How about one showing what is happening in the garden?

Now that the extreme heat of the summer is over the flowers in all of my pots have recovered and are blooming like crazy. It is fun having blooms around while the leaves are falling off of the trees.

I’m behind on book reading as I was focused on getting that gift kitty done, but now that I’m caught up again I am looking forward to a week piled up with Hannah and a book. Doesn’t that sound great? Speaking of Hannah, how about a cute picture.

Hannah dreaming of kitty cookies in her sleep…

Have a great week, everyone!!

Read a little, knit a little, and garden like your heart can’t live without it.

Little Miss Pitty-Pat’s Great Adventure

Remember Little Miss Pitty-Pat? She is the Syrian hamster that I adopted to be entertainment for MacKenzie after his “baby” and companion, Yellow Boy, passed away.

Yellow Boy was MacKenzie’s companion buddy, and MacKenzie really struggled after Yellow Boy died, so the hamster was a badly needed distraction for him.

Pitty-Pat is a big, companionable hamster who actively squeeks at me to hand over some fresh food when she sees me. She isn’t afraid of me, but won’t let me pick her up at all; I never handled her while MacKenzie was here, because… cat claws and teeth!!

Last night I gave Pitty-Pat some treats and headed off to bed to read for awhile.

I gave her some nice hay as a snack for the night.

Just as I was getting ready to turn off the light and go to sleep I noticed a little brown body slip into the space between the dresser and the wall. Oh, no… Pitty-Pat!! I was out of bed in a flash and the fun began. Here’s the timeline of the major events:

1:45 am: I glimpse the hamster ducking behind my dresser in the bedroom.
1:46 am: There is some door slamming and the emergency pillow containment systems are deployed.
1:48 am: I found a flashlight and I’ve managed to pull out the dresser from the wall in a hamster-friendly manner while blocking all the exits with pillows. Whew! Why is this dresser so heavy?
1:49 am: Pitty-Pat runs out to check on my progress. I think that she squeeked off a little hamster raspberry as she dove back under the dresser.
1:55 am: I begin rescue operations using the flashlight and an old curtain rod to try to sweep Pitty-Pat out from under the dresser and into a box baited with apple slices.
2:00 am: She went into the box!! I carefully uprighted the box and tried to get out from behind the dresser with her. Aww. She was so cute in there. I was thinking of taking a picture of her when suddenly…
2:01 am: She decided to bail on the box. There was an explosion of squawking as Litte Miss erupted out of box, landed on a pillow, and scurried back to her under-dresser playground.
2:05 am: After searching the garage a box with a lid was located.
2:11 am: I tried the “sweep the hamster into the box” trick again. Who knew a hamster could squawk so loudly? Finally she decided that she wanted the apples and I had her!
2:15 am: Little Miss Pitty-Pat was safely returned to her cage. It looks like I didn’t latch the door correctly before.
Where are my apples!!
Pitty-Pat immediately demands that her apple slices be handed over!
2:20 am: The exhausted hamster owner returns to bed. Little Miss Pitty-Pat also headed to bed with her apple slices.

How’s your stay-at-home going?

Surviving the Stay-At-Home Order

So, here we are.

I don’t know how everyone else is doing, but here in my state we were just ordered to stay at home for another 2 weeks. At first they asked us nicely to socially isolate as much as possible; now the gloves are off as things are getting more serious. Many other nations have been dealing with lockdown situations for longer than we have, and for some of you this situation may be coming. Times are really getting tough: an invisible enemy, stress, grief, loss, and economic uncertainty. And now you need to stay home for who knows how long…

Well, as it turns out I have some experience with staying home in self-isolation. I’ve been social distancing for months now; it started last summer when I switched to “night shift” to avoid sunlight, and then I doubled down when the flu season started. Hey, sunlight activates my scleroderma, and I was blue-faced and panting for air, so catching the flu was a really terrifying thought. Rats! I contracted the flu anyway, and just as I recovered I became aware of this looming new coronavirus… I was motivated to self-isolate, which may be or not be the case for you, but I do have some insights and strategies to pass on to anyone who wants them.

Okay, I just want to acknowledge that this is really, really tough. I absolutely understand that my situation, under no circumstances, should be confused with the stress of a pandemic and the coinciding economic repercussions. Still, in case any of this helps, here it is.

Make lists. Lots and lots of lists! It helps so much to bring some internal structure and purpose to your days. I make lists of things to do each day, and more lists of long-term projects that I think I might like to tackle. Make lists of blog post ideas. Add new things that you think of to your lists, and reorganize them as needed. Keep yourself going, and make plans for the days to come. Really, it helps!
One of the projects that I put on the long-term list is to knit at least one sock from each of these books. There are a lot of technically challenging socks to choose from: should keep me busy, huh!
Structure your time. When I lost my work-day structure I just didn’t know what to do with myself at first; creating a new structure helps with that. Plan a daily walk, watch a set show each night on the television, create blocks of time for specific tasks (like knitting!), do a puzzle or read each day; don’t forget to stick in yoga, meditation, or journaling if they appeal to you. Just don’t spend all day on one thing that will be finished at the end of the day. It actually is better to chunk multiple tasks over several days so you won’t hit a dead zone.
Right now I am working on this quilt every afternoon for a couple of hours.
Exercise and get sunshine. Unless of course the sunshine will make you sick. I can’t emphasize how calming and peaceful some time outside can be. Even gardening inside helps. Get some exercise! That can be one of your daily blocks of time, even if it is only your physical therapy and the number of steps daily on your Fitbit.
Spinning is exercise, right? I thought that an hour treadling my wheel was a good idea. My hip begs to differ…
Create zones in your home to keep you moving around. Right now I have transformed the dining room into a quilting area, and there is a reading zone in the living room with a weighted blanket (and my monster orchid) waiting for me. I have a desk with my computer in the room that used to be my office, and I have a knitting area all set up. The trick is to keep moving, and link your movements to your activities. Maybe staying on the couch works for you for awhile, but it is not a good long term plan, people!!
Plan and make nice meals for yourself. Oh, look! Another list! Does anyone have any yummy recipes that I can cook in a crock pot?
Record your days and your progress. Keep a journal, or maybe just a day planner. Write on the calendar. Try not to write on the walls, but if that makes you happy, go for it!! Sign up for challenges on places like Goodreads or Ravelry. Maybe create your own challenges. Do it!
Every night I record my knitting progress into my day planner. It’s kind of cheesy, but it helps me keep going. Last night I cast off the sweater and made sure it would fit me: it fits!!! Tonight I will start on the pockets.
Clean and organize stuff. In a world where we don’t have a lot of control over what is happening, it sure helps to create a nice, clean, tidy environment for yourself. Go after the cabinets and clean the closets! Organize the pantry. Arrange your books, or games, or whatever you have cluttering around in your living area. Clean up your music, photos, or the files on your computer. You’ll be so happy that you did. I cleaned the garage last week and I am still riding the wave of good feeling. Next week: the yarn stash!!
Connect with everyone you can. Talk to neighbors from your doorstep. Chat with family and friends online. My book group is working out how to meet virtually next week. Remember to text to check in with people often. Being isolated doesn’t mean that we need to be all alone.
Don’t forget to shower, people!!

So that is my list. A list! I made another list, look at me go! Take any of this that is of use to you, and absolutely ignore the items that aren’t. Feel free to chime in and add any other ideas that you have to cope with being forced into inaction during a time that screams for action.

Be safe, everyone!

The Scleroderma Chronicles: Rare Disease Day 2020

I’m an orphan. I’m a zebra. I am rare. This is a club that is hard to get into because it has really specific criteria, but it also has lots and lots of members.

What, you say? Whatever is she talking about?

I’m talking about rare diseases! A rare disease is classified as one that impacts a small percentage of the total population. Here in the United States that means fewer than 200,000 people diagnosed with the condition/disease. Perversely, there are a lot of people with rare diseases as there are almost 7,000 different rare diseases! Some of these diseases are common enough that you may be familiar with them: albinism, achondroplasia (a type of dwarfism), and autoimmune hepatitis are examples. Others are very rare. Most are genetic in origin, and half of them impact children. More than 90% of rare conditions have no drug treatment. You can learn more about rare diseases in general and search for specific conditions/diseases in the links at the end of this post.

So, what is Rare Disease Day? The purpose of this day is to raise awareness of the many, many diseases that are classified as “rare” around the world. The hope is that by shining a light on these diseases, and to put a face on the people who struggle with the many rare conditions that are out there, there will be improvements in how these people are handled in the health care system, drug companies, funding agencies, and by the public.

I joined the rare disease club 5 years ago when I was diagnosed with systemic sclerosis, a serious form of scleroderma that has no cure, can be disabling, progressive, and often fatal. These last 5 years have certainly been eye-opening for me, and I believe that my experiences are shared by many others who struggle with rare diseases. Let me list some of my epiphanies during this journey:

- People in general are dismissive of illnesses that they have never heard of before. If you are a person with a rare disease, it is almost a certainty that no one has heard of your disease. Oops. You just got written off as an attention-seeking hypochondriac by a person who hardly knows you because they never heard of your disease…
- The health care industry is designed to treat people with common diseases, and often ignores, dismisses, or denigrates patients who don’t fit the normal profile: the zebras. It is really, really hard to get a diagnosis for some rare conditions (autoimmune diseases like mine are famous for this). If you have a rare disease, you are trying to make your way through a system that wasn’t designed to identify and treat you.
- There is little incentive for drug companies to develop treatments that can only be used for a small patient population. That’s why there rarely is an effective treatment or cure. That’s also why drugs for rare diseases are called orphan drugs; another name for a rare disease is an orphan disease. Yep, I’m an orphan, but there are several drugs with orphan status in the development pipeline right now. I’m lucky that way; most orphan diseases have no drugs for treatment under development.
- To be rare means you may be too risky to treat. Once you are diagnosed with an unusual health condition it actually interferes with your medical care; because you are complicated physicians are likely to dismiss or “just monitor” symptoms that would receive immediate attention in another patient. Without more experience they can’t be sure what is “normal” for you and/or if the treatment usually used for other patients might make things worse for you. There’s another whole blog post about this on the way!
- It is really, really hard for people to wrap their heads around “chronic.” We almost all universally believe that people can get better if they just try. Attitude is everything, right? If you just took this supplement, started eating keto, got more exercise and sunshine, tried essential oils…
- Closely associated to this belief in the general public is one that assigns blame to the ill for their disease. If you are sick it must be because you ate too much red meat, or are obese, or failed to exercise enough. You should have eaten organic!! I know that people do this because they want to believe that they are safe from a similar diagnosis, but it still adds to the burden of those dealing with a life off the mainstream, caused, not by their choices, but by an inherited flaw in their genes.
- If all of this wasn’t enough, or maybe because of all of this, rare diseases are expensive and isolating. Resources are few. Support is hard to find. You feel alone. An orphan.

So, this is Rare Disease Day. Some people with rare diseases must share experiences like mine; many are far, far worse than my own. If you would like to learn more about rare diseases here are some resources:

MacKenzie Speaks: MacKnitzie takes a road trip.

Hi. I’m MacKenzie.

Remember these yarns that were used to knit my look-alike friend?

Well, I’ve been hanging out with the knitted friend all week while it has been snowing outside. He is almost as good as a blankie!! The Mother of Cats had some trouble naming my knitted buddy… she got lots of suggestions from other bloggers (whatever that is… do they have cookies?) like Matheson, and Ross, and even Fuzzy, but when one of her blogging buddies suggested “MacKnitzie” that was the name!!

Anyway, the Mother of Cats took MacKnitzie with her when she went on a road trip to her son’s place this weekend. She left me all alone!! Why does the Mother of Cats do these things, and why did she have to take MacKnitzie with her? You should see all of the things that MacKnitzie did while I was home all alone without anyone to groom my fur or give me cookies for my afternoon snack. The Mother of Cats needs to have better priorities!!

MacKnitzie got to sleep on a strange cat pillar…

And he played with the new kitten that belongs to the Mother of Cats’ son.

Okay, I heard from MacKnitzie that the kitten beat him up, bunny kicked him, and chewed on his paw. It was just awful! How could the Mother of Cats let this happen to him. When it was over he rested with the kitten’s toy rat until he recovered.

Then he took a nap with the grown up cat that lives there.

Whew. It was really hard to get through the two days without MacKnitzie!! I can’t believe that the Mother of Cats separated us like that! What was she thinking about? Thank goodness she brought him home safe again for me to take naps with last night.

Because MacKnitzie is the best little napping buddy a cat could have!

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

I’m collecting all of the yarns to make two more cats. The first will be the orange kitten, and then I have to figure out how to knit a tuxedo Maine coon cat… lots and lots of fluffy fur going on!!

I took all of the collected yarns up to my son’s place this weekend along with the knitted cat so he could give me feedback on the yarns that I was thinking of using.
I got such great ideas for names for the knitted cat! My sister called him Fuzzy, which he certainly is. Highlandhuffalump suggested the clan name Matheson, which I really liked, and then Catherine mentioned Ross for a name, which was also pretty darn appealing. When mildlygranola suggested “MacKnitzie” it was over: the knitted cat absolutely decided that it wanted to be named MacKnitzie!! Thank you all for the help.
The knitted cat is the pattern Cat by Claire Garland. MacKnitzie’s project page is here.

MacKenzie and Me

I just got the email from the vet’s office last week: Happy Birthday, MacKenzie! Really, we aren’t completely sure how old MacKenzie is as I adopted him as an adult from a PetSmart over 14 years ago. The vet at that time felt he was at least 2 years old, which makes him now over 16. He is an elderly gentleman cat in his golden years.

Things weren’t always good with MacKenzie. He had been surrendered by his previous owner due to bad behavior: he scratched and destroyed everything in his path. Okay, let’s be frank here: MacKenzie was hell on cat feet!! Sneaky and wise to the ways of a spray bottle, he was hard to control as he ripped up curtains, furniture, and even dry wall. He was also extremely needy and demanding; there weren’t enough toys in the world to keep him entertained. Very smart, strong willed, curious, socially inclined, and a cat asshole, he was a mess like no other. I hunted for cat behavior modification tips on the internet, bought cat trees, scratching posts, liquid catnip, and kitty deterrent spray for the furniture. I also bought kitty cookies!!

And I got him a kitten! This is Yellow Boy, his “baby” who really calmed and stabilized him until his death 18 months ago.

It took a few weeks, but with enough toys, his kitten, and lots of positive attention (and scratching posts) his behavior changed and he transformed into the cat I have today. He’s still a handful, but he (mostly) wants to please me.

Today he is my buddy and companion as we both struggle with medical issues.

The last year has been one of difficulty and medical misadventures for MacKenzie and me. Last winter I was struggling with swollen and painful joints, inflamed tendons/ligaments, and had trouble walking. MacKenzie’s right jaw locked and became badly damaged. I had to cut down his kitty cookies. By the end of summer my leg was completely collapsing and dropping me, and MacKenzie blew out the other jaw joint. I could see white bone in the joint before I got it to unlock and rushed him to the vet. Not good, not good, not good. I got him in the door at the vets office in his carrier somehow while managing to walk with one crutch.

The vet drew blood while we were at the office.

MacKenzie will need surgery to completely recover, but in the meantime the vet and I decided to use a course of anti-inflammatory drugs to help him heal. I wasn’t sure I should put him through surgery due to his age and general hatred of vets. The biggest problem was having to move him to soft food and there could be NO MORE KITTY COOKIES!!! MacKenzie hates soft food so I also bought him kitten food with its tiny kibble.

The blood tests showed that MacKenzie had hyperthyroidism so we started him on medication for that. Everything was going great until…

We ended up at the emergency animal service in the early morning hours of Christmas Eve.

We were really in trouble. MacKenzie was taken back for x-rays and an evaluation. Extreme constipation. A swollen spleen. Stones in his bladder. The vet wanted to do a biopsy on the spleen as it is probably cancer. He needed to have special food to dissolve the kidney stones; he will need surgery if they don’t dissolve. He had a loose tooth that needed to come out. I started him on the food and we made plans to have an ultrasound done in another month to check on the spleen and bladder stones.

Meanwhile I was having a spot of trouble myself. I developed extreme exhausion and worse shortness of breath. I had a few bouts with faintness and couldn’t stay on my feet more than a few minutes at a time. I collapsed in the yarn store and just narrowly avoided a 911 call. My face looked blue around my mouth way too much. I had a persistent pain in my side. My doctor ordered blood tests and a CT scan. I was ticking all of the boxes for lymphoma…

The special food for MacKenzie’s bladder stones came as soft food and a dry nugget kibble. The kibble was much larger than the kitten food, but I switched him to it anyway and offered him soft food too. I faithfully kept giving MacKenzie the medicine for his hyperthyroidism as the vet emphasized that this was critical for me to do. I was supposed to give MacKenzie a stool softener every day, but he refused to eat it on his food and would just vomit up the pill if I got it down him. The strong-willed sneakiness that got him dropped off at PetSmart all those years ago was back as he snuck behind furniture to throw up the pill where I wouldn’t find it.

Such a sweet boy… but very strong willed!

I caught the flu when I went in for the CT scan, and while I was sick MacKenzie began vomiting and showing signs of constipation. For 4 days. I battled with him to get his stool softener in. Desperate, I finally smeared Vaseline on his paw hoping he would lick it off and ingest it, and I stopped giving him his hyperthyroid medicine as I’m pretty sure it is the cause of this constipation.

Meanwhile my test results came back: not lymphoma, but that pain in my side is my spleen. My spleen! Me and the cat, rocking our swollen and painful spleens!! My blood work showed that my red blood cell count was way too high, and I had to get tested for a rare blood disorder called polycythemia vera (no results yet), and my doctor ordered a couple of other cancer screening. I also have a small hiatal hernia, a damaged esophagus, and increased fluid around my heart. Oh, scleroderma, why can’t you just behave yourself?! I have a sick cat on my hands!!

Vaseline saved the day and we managed to stay out of the kitty ER. Then MacKenzie’s loose tooth fell out and I broke a molar. “Why are we trapped in this bizarre parallel medical misadventure horror story,” I asked MacKenzie. Too sick with the flu to go anywhere, we both just had to hang tough for another week.

Then, just as MacKenzie got to the 30 day point on his special food, he dislocated his jaw again. Well versed in how to respond at this point I was able to get it to release within seconds, but that was the end of those big kibbles. I switched MacKenzie back to his kitten food. The vet prescribed a sugar solution, our last option, that I’m supposed to give MacKenzie three times a day to control the constipation. Right. I’m supposed to convince this ornery, strong-willed, too-smart-for-his-own-good cat to gulp down sugar water from a syringe every day. How can I do that without getting bit?

Give him KITTY COOKIES, or course. I stay right with him the whole time in case his jaw goes out.

So, here is the crazy end of the story. I’m feeling better after three weeks of bed rest and eventually we will get to the bottom of my new symptoms: I have some invasive testing coming my way and depending on what happens there will be further treatment. I’m pretty sure I’ll be back on oxygen before this is over. My cat is also feeling better and is pretty much back to where he started: eating the food that he wants and getting his kitty cookies again. Here’s the thing: I am in control of what happens to me, and can decline medical treatment, but MacKenzie needs me to do that for him. Last week I made those decisions.

My vet calls each week to check on MacKenzie; she has discussed the importance of maintaining a good quality of life for him as long as possible, but to not go too far. I have stopped all of MacKenzie’s meds except for the sugar water and I have decided to not subject him to any invasive testing, surgery or chemo. I’m going to keep him as comfortable as I can and we will ride this out to the end together.

And then if there are garter snakes in heaven MacKenzie and Yellow Boy will be chasing them together.

Heaven had also better lay in a stock of kitty cookies!!