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.
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.
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.
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.
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!
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.
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.
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!
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.
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:
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!!
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.
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.
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!!
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.
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.
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 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.
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.
Heaven had also better lay in a stock of kitty cookies!!
Spring was challenging this year. It was colder and wetter than usual, with lots of windy, stormy days. I wasn’t able to get out to work with the roses as I usually did in past years, but I did manage to pull up the worst of the weeds and dumped some Miracle Gro on the front flowers one day. Really, there was some rose neglect going on, for sure.
When I went shopping for the front roses I looked to see what was available and then checked the list of recommended roses for Colorado published by Colorado State University on the nice little pdf in the above link that gave hints for successful planting. These roses, picked to go with my house, are called Hot Cocoa. They are floribundas, so there should be more blooms following these beauties.
The roses in the back garden were finally rescued from the overgrowth of weeds one afternoon a couple of weeks ago, and look what emerged!
This rose bush, Princess Alexandra of Kent, has never looked this good before. The blooms are so big the plant is having trouble supporting them, and this rose bush never got fertilizer. It has to be the cool, wet spring.
MacKenzie and I have been working diligently in 30 minute increments to get weeds out of gardens, and the most astounding discovery has been what happened to a virtually unloved rose along the back fence. Seriously, this is a rose that “went wild” when the original grafted rose died and the roots took over. I kept cutting back the runners, pulling it out of the ground, whacking it back into a reasonable rose size, and basically losing the battle with this rose that is determined to live.
That is all one rose plant that has grown immensely in the prime rose growth conditions of the last couple of months. I have now surrendered to fate, pulled the rose all back and attached the canes to two trellises and the top of my garden swing. Clearly, this rose will be growing down the fence in the years to come.
Did you notice the rotting seat to the swinging garden chair? Ugh. It is all nasty and sagging these days and clearly needed to be replaced. This week I cut the seat off and went to work to replace it with something that will allow me to return to my garden where I can read and knit in the presence of the One Rose to Rule Them All and the other flowers that are flourishing this year.
I made sure that the seat was really taut so that it wouldn’t sag when I sat in the swinging chair. I reattached the seat to the frame and then lashed on another clothesline as “warp” across the seat back and then called it quits. If I need to weave in more pieces of line I can do it later, but I’m thinking that just the warp across the back will be enough to make the swinging chair function the way I want it to.
Did you notice the weeds? Sigh. It is endless, truly it is. I’m resolved to not overdo things and will continue to work my way through the gardens, little by little, 30 minutes at a time, and day by day my yard and the gardens are looking better.
Between weeding sessions I will be hanging out in my garden swing, knitting away, with my beautiful roses. My cat MacKenzie will be sleeping in his garden, and hopefully the dog next door will be behaving herself.
This week the heat finally arrived and we hit the 90’s. My scleroderma joints are happy with the warmer weather, I continue to flourish with the new drug changes, and I can finally knit outside again. Yippee! The lavender plants and yarrow are covered with buds, and I have lots of perennials that need to be freed from the weeds.
I am happy to announce the arrival of our bouncing baby Nordiska after weeks of effort. I really supervised the Mother of Cats closely this time and kept my paw on the knitting at almost all times, and I do say that my efforts have really paid off.
The Mother of Cats totally freaked out within hours of finishing this sweater and pulled out boxes of yarn to wind for new projects. So emotional, the Mother of Cats. She simply can’t function without me and at least 4 different projects to work on at once. I helped her with all of the yarn winding and we’re hard at work getting new shawls and mitts done now. Next time I write I’ll show them all off!