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.

  1. 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!
  2. 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.
  3. 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…
  4. 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!!
  5. 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?
  6. 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.
  7. 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!!
  8. 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.
  9. 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: The Blue-Lipped Zebra Goes On Oxygen

This week I finished up the pulmonary tests to see what was up with my lungs. This was pretty darn stressful and the poor BLZ was just besides itself with the trauma of walking into a major hospital to get admitted for outpatient testing.

This is my son’s kitten Jonesy, named after the cat on the Nostromo, the ship that accidently picked up a deadly Alien while answering a distress beacon on a strange planet… Jonesy is utterly fearless, more than capable of facing down a scary monster alien. This Jonesy is also pretty darn fearless. Be brave, face this down, I told myself while petting Jonesy.

I was brave. On the day my state opened up the first drive-through testing station for the Covid virus, I presented myself at outpatient admissions. I wore my fleece gloves the whole time I was there and followed all of the safety guidelines. I combined two appointments into one so I could pick up the equipment for overnight oxygen level monitoring while I was in the building for pulmonary function testing. The hospital was almost deserted and had bottles of hand sanitizer out for use at every stop on my route, so it wasn’t as bad as it could have been. I literally swerved and walked around anyone in my way, especially if they were wearing a face mask…

In case you all need a reminder, my red blood cell count (rbc) is way too high, and I have blue lips and shortness of breath. My internist diagnosed polycythemia, and once I googled it I discovered that I have every single one of the listed symptoms. The purpose of all of this testing is to uncover the underlying condition causing my rbc to rise. So, let’s just jump to the chase. Here are the results:

    • My lungs are scarred and I have interstitial lung disease, a type of restrictive lung disease. I am stable and haven’t gotten worse when compared to the last testing two years ago.
    • It’s not pulmonary hypertension. Yay! That would have been really bad news. My echocardiogram showed that I am at the upper limits of heart wall thickening, and my pulmonary artery is at the upper limit of normal, but I’m hanging in there.
    • My oxygen level fell below 89% for almost an hour while I was sleeping the night I wore the monitoring equipment. Yay!! Houston, we have found a problem!!

Once the results were in the pulmonologist’s office called for a phone appointment and I got the good news. Well, the sort of good news. I have to go on oxygen overnight to keep my levels up, and the hope is that my rbc count will start to drop. If overnight oxygen doesn’t do the trick I may have to go to oxygen 24/7, but I’m not there yet. (The BLZ is happy but a little sad too. The BLZ hates to wear oxygen, and really doesn’t want to wear it when it goes out shopping… ) Seriously, I don’t appear handicapped until I have to walk with a cane and wear oxygen… then there is no hiding it any more.

Thinking about future appointments and the procedure with the hip specialist (I need an injection of steroids into my bad-boy hip), I asked what my risk from Covid was… (The BLZ was trying to not cry) and my pulmonologist told me straight out that she thought I would survive an infection but that I should put off any more trips to medical clinics for a few more weeks so that hospitals could finish gearing up for severe cases. Well, shoot. (The BFZ is now sobbing…)

Then I throttled the BFZ into silence and headed out to buy the last of the supplies that I needed to get through a few weeks alone. I’m immunocompromised; the medications that I take to control my autoimmune diseases have helped me to become stable, but they also make me high risk for any infection. Nothing has changed, I reminded the BLZ, but now the risk of a serious infection is coming at a time when the medical system may be overwhelmed and unable to take care of me. I’ve been using good judgement, social distancing, and hand washing for a few years now; I will continue for myself and everyone else sharing this scary time.

The truck carrying the oxygen equipment was at my house waiting for me when I returned so I am set up. Hopefully the BLZ will now slowly fade away and I will stop panting for air every time I move.

If this was a race to get new test results into my chart, the underlying cause of my polycythemia identified, and remedial measures into action, I have made it. I have a phone appointment with my new rheumatologist next week and I will ask her about the hip procedure and referral to the foot specialist, but I think that in the current unfolding Covid crisis there isn’t any hurry.

As for the inner voice that worries and feels panicky, my inner BFZ voice, I am going to smooth it into submission with the peaceful zen of knitting. Be brave, be brave, I purr to myself. Just like my son’s kitten Jonesy.

You all be safe out there!!

The Scleroderma Chronicles: The Blue-Lipped Zebra gets some MRIs

I feel like I am in a race now. I absolutely, positively need some answers to all of my little medical issues, but I have to hurry, hurry, hurry because the Covid-19 virus is already in my state and I think that in just a matter of days or weeks the health care machine is going to be devoted to critical care and the pandemic response. I hope none of my doctors get sick. I really like the nurses in their offices. Gee, this is starting to get to be really stressful…

Let’s take a little break to smell the roses… umm… the orchids. Look at how nice my rose gold orchid is doing in the living room these days.

So, this is the situation as I got into the car and drove to medical clinics FOUR different times last week. By Saturday, when I needed to drive to a facility an hour away for MRIs of my right hip and left foot I was starting to feel like I was pushing my luck. The BLZ totally wanted to stay in bed. I was worried about having to go through an urgent care waiting area full of sick people because the last time I did that I came down with… THE FLU. Ugh. The place is sure to be crowded with weekend warriors and sick people who were afraid to take off work on a week day…

When I got there the parking lot was almost empty. What?! What is going on? I checked on my phone to make sure I was at the right facility, and then went inside to see if I could find someone. The place was deserted!! The only person in sight was the security guard in her glassed-in station. I checked in with her to discover that the entire facility was closed except for… wait for it…medical imaging!! Woohoo!! I clomped down to the basement for my 90 minutes in a MRI machine feeling pretty good about my chances of avoiding this new virus that I’m now sure is gunning for me. All went well, I headed home, fixed myself a little dinner, popped a couple of gummi bears into my mouth while I was cooking, and BROKE A TOOTH!!

How about another little orchid break? You can see how big the monster is compared to my other orchids.

Sigh. Now I have another two medical appointments because the tooth is sure to need a crown. Plus I have two more testing appointments next week which will really be starting to push the safety margin.  The BLZ is not happy.

Today I saw my wonderful dentist who let me know that gummi bears are notorious for hurting teeth. Who knew? He fixed my tooth and gave a computer print-out for a type of safe gummi bear, and before I left the office I saw that the MRI test reports were ready. That means my rheumatologist already released them. I read the reports in the car in the parking lot on my phone before heading home. (Although I wanted to go get my gummi bears!!)

Background: I have been struggling with painful and swollen joints for at least three years now. My last rheumatologist tested me for inflammation markers (C-Reactive Protein, to be exact), and since my level is normal, she concluded that my joints were fine, that I was a whiner, and the symptoms that I reported were exaggerated. (!!) I wrote about the last awful appointment I had with her in this post. After I had recovered my mojo and began to take action to improve my situation I wrote about my old rheumatologist and my swollen joints here. My new rheumatologist, who I saw last week, ordered these MRIs to check some lumps on my foot and my bad-boy hip. She wondered out loud why no one had followed up on my first appointment to the hip specialist. I think I’m going to be much more happy with this rheumatologist.

Oh, my. My hip joint is really bad. The word severe was used. There is edema in the bone! There is fluid around the joint that is pushing out into a bursa towards the front inside part of the hip joint. (The very bursa that I asked about before when I saw the orthopedic specialist. It couldn’t be involved, he assured me, because that would be very uncommon. The BLZ is braying “I told you so!”) A tendon on the outside of the joint is partially torn. The synovial lining around the joint is inflamed. Even joints in my ankle (that don’t bother me) are inflamed and have fluid in them. Stunned, but feeling absolutely vindicated, I began to drive home. Before I had even gotten to the freeway the new rheumatologist was on the phone to me. She is sending me back to the hip specialist and I need some steroids into that hip joint as soon as possible. And maybe surgery. And I should go back to physical therapy. The BLZ decided we should mention my knees later on… Oh. I almost forgot. I also have two benign tumors on the bottom of my foot that will require another specialist. Did you hear that thud? That was the BLZ flopping over backwards in dismay.

After a little knitting this evening the BLZ is feeling more the thing again. Look at how far I’ve gotten on the knitted kitten!

Tomorrow I head back to the clinic in the north to get a pulmonary function test and to pick up the equipment for overnight oxygen level monitoring. I won’t touch anything, BLZ. It will be okay. We are brave! We are on a roll now and we are getting some answers!

Be safe everyone!

The Saturday Update: Week 10

This week I have been really busy with appointments and testing. I wrote about the first round of doctor’s appointments in this earlier post (The Blue-Lipped Zebra Report) where I also showed off my fabulous monster orchid in bloom and a pair of finished socks. I finished the week with an echocardiogram and two MRI tests. In the week when COVID-19 arrived in Colorado I walked into 4 different medical clinics feeling like I was walking into the lion’s den. Hopefully there will be some good results soon. Next week it just keeps going as I have two more tests scheduled; after the test results arrive I have appointments with two of my doctors again. Whew!

Knitting

Knitting took a hit this week as I spent too much time driving around completing medical tests to get much knitting done, but I did make some progress on the Pebble Tunic.

Sigh. This is the part of sweater knitting that takes out the faint of heart. I’m knitting down the body of the sweater, and even though I’ve added almost 6 inches of knitting, it feels like I’m not getting anything accomplished. In about 4 more inches I get to add the pockets. Yay! Something different.

I’m knitting the tunic holding a single ply fingering yarn with a silk-mohair lace yarn, and knitting with the two yarns is just a joy. So soft and yummy feeling. My project notes are here. I also started knitting a copy of my son’s kitten Jonesy, which is really fun and involves even more yummy mohair. Check this out.

Once again I’m using the pattern Cat by Claire Garland. If you would like to see what yarns I’m using you can check them out on my Ravelry page.
I’m going to use some embroidery to add more color to the face later (stripes and freckles) but I think that I’m doing pretty good on the color match. I can’t wait to start knitting the stripes in Jonesy’s body.
Garden

All of this medical testing is a little traumatizing: long drives to cold rooms where I battle to control my Raynaud’s while the tests are being run. Today I drove 2 hours to be trapped in an MRI machine for 90 minutes. One hand was solid blue when I got done, but as soon as I got outside into the warmth it pinked up again. After fun like that I need a little reward, don’t you think? After leaving the clinic I drove straight to the nursery and bought my African violet some little buddies. Aren’t these just the cutest?

Aren’t these the happiest guys ever? I found the little pots on the discount shelf: perfect!!

These violets are really small and were next to the miniature plants section, so I’m not sure exactly how big these plants are going to be, but they are blooming like crazy so I have high hopes for these little guys. My original African violet is the one in the background.

Books

Another sigh. I’m still reading the same book, The Overstory by Richard Powers. I’m further along with the story, and, as I anticipated, the cast of characters (all people with a relationship with a tree), have met up and are now activists trying to save the old natural growth forests in the western US. I don’t want to spoil anything, so I’m not going to share any more details of the plot, other than I am fascinated by the work of Dr. Patricia Westerford,  one of the characters in the book. She studies mechanisms of communication between trees, and in particular, is studying Douglas firs in one part of the book. Plants are crafty organisms that use lots of mechanisms to respond to the environment. They use hormones to control their growth, and they are able to track the hours of the day (or maybe it actually is the night) so that they bloom at the right time of the year. Of course they are communicating with each other!!

Look at these female cones on my Douglas fir tree. They are kind of goofy looking with those bracts hanging out between the cone scales. They have the only cone like that in our nearby Rocky Mountains. The needles are strange too… they have little tiny stems on them like leaves.

I have a Douglas fir growing in my backyard where I have been babying it for a few years as the honey locust tree next door is outgrowing it and putting it into shade. Poor Douglas fir. They are kind of misfits in our mountains, having no other close relative, aren’t really fir trees at all, and are notorious for pulling a lot of water from the ground. When I attended a forestry workshop in the Denver montaine watershed I was told that the only good Doug is a dead Doug… hey, Dougs need love too! Some of the trees in that forest are turned to sawdust by enomous grinding machines to both thin the forest and reduce water use; some of those thinned trees are evidently Dougs. Douglas firs are really important timber trees, which is why they are in this book, but they aren’t beloved by the biologists who are making sure Denver has enough water in the coming year. Luckily for my Doug I am hiding it from the Denver water board and giving it all the water that it wants. Sadly, it is the only one around and has no other Doug tree to talk to. I wonder if the honey locust ever chats with it?

Have a great week, everyone!! Read a little, knit a little, and garden like your heart can’t live without it!

Okay, I just had to show off the monster orchid again. I feel happy every time I see this big guy. This is why it is good to garden. 🙂

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:

A Month of Crutches and Panic Knitting: The Destash Project Update

It really has been a quiet month for me as I’ve been more housebound than usual as I slowly recover from bursitis and tendonitis in one (thank heavens only one!) hip. I’ve been doing my physical therapy, faithfully using my crutch whenever I have to do any prolonged walking (like going to the grocery store), and even started a gym membership so I can start on the reclined bike for the prescribed 5 minute workouts. It helps that it has been cold and I’ve been very motivated to get some projects done. I cleaned up my sewing room and started on some quilts, joined another book club, and began some serious panic knitting to get my yarn destash project back on track after a disastrous September shopping spree.

I entered the month with only 33.5 skeins out of the stash, and my goal is 50 skeins out of the stash before the end of the year. Yikes! I settled into the knitting chair, started an audiobook and began to catch up on knitting projects every afternoon into the evening.

I had two sweaters that were close to completion at the start of the month: the Climb Every Mountain (upper left) and the Koivua (upper right). I finished them up rather quickly (3 skeins used) and then cranked out the Understated sweater (bottom right) in less than two weeks, using up 6 skeins in the effort. Pretty productive!

This week I pulled out several skeins of yarn that were kind of rustic (not superwash), paired then with some mohair that I’ve had stashed forever and make MacKenzie (my very spoiled and demanding cat) a cushy padded sleeping blanket in three days flat while a series of cold fronts dumped a foot of snow and drove temperatures into single digits. It helped that I used big needles and 4 strands of yarn held together for the project.

Another 7.5 skeins of yarn used!!

I also managed to polish off a couple pairs of socks (very simple, mash-up socks that are winter workhorses…) that aren’t all that much to look at, but they used up another couple skeins of yarn.

See what I mean? These are just simple ribbed socks with a sturdy heel.

I have a couple of other projects on the needles at the moment, a cowl and another sweater that will take me through next month, and then before I know it I will be at the end of the year. The destash project kind of hangs over me so I have been knitting steady.

This sweater got started this evening and should really use up most of my Heilo stash. I have 20 skeins of the Heilo, so I have been saving this sweater back as kind of a ringer for the destash project. This is Barn from the book Knits About Winter (Emily Foden). It will be nice and warm for me as winter weather really arrives in the weeks to come.

This evening I totaled up the skeins used this month on my little spreadsheet (yes, I am that big of a geek!) and to my shock the total now is…

52 skeins!!!

I have made it! The destash goal is polished off and I will be way over it when I finish the Barn sweater. Whew! I can now shift attention to getting more sewing done and maybe even will be able to spin a little or do some weaving before Christmas if the hip behaves itself. Maybe bake some cookies. You know, go wild with the relief of having made my goal. Who knew that bursitis, tendonitis, and being on crutches for a few weeks would turn out to be a blessing in disguise? Every cloud does have a silver lining after all!

I will, however, be staying out of the yarn store until the end of the year! No more slips, no more slips, no more slips (chant along with me, people!), no more slips…

May your knitting be good, your books exciting, your chronic illnesses (if you are a member of that club with me) well behaved, and all your New Year’s resolutions met. Have a great weekend, everyone.

The Scleroderma Chronicles: Safe House

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

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

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

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

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

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

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

Sunshine It makes me sick! Enough said.

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

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

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

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

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

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

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

And a cat!

It is good to have a safe house.

The Scleroderma Chronicles: World Scleroderma Day

Today is World Scleroderma Day. Tonight the Niagara Falls will be illuminated blue and white in recognition of the day. All this month (June) there have been walks and outreach to raise awareness of this disease and to raise money for scleroderma research, and scleroderma patients all over the world have been urged to post pictures of their faces (and smiles) to made this disease more real and relatable.

Rather than flash my smile I have chosen to show this picture of me and MacKenzie, wrapped in handknits, fighting my way through a flare one frozen January. Good times! See the light in the background? It reminds me that every flare comes to an end.

The purpose of this day is to try to raise awareness of an illness that is mostly invisible and relatively unknown.

So what is scleroderma? It is a rare autoimmune disease that is a member of the rheumatic diseases family. The name “scleroderma” means hard (sclero) skin (derma), which is the most visible symptom. Scleroderma is the general name that is applied to a group of connective tissue diseases that may target only the skin, or the skin plus internal organs, or just the internal organs themselves. The words that are used to describe my type of scleroderma (limited systemic sclerosis) are rare, chronic, progressive, disabling, and possibly life threatening. This is a lot to wrap one’s head around, so I’ve decided to break it down.

Rare: Here in the United States the CDC has defined a disease with fewer than 200,000 patients as “rare”. Systemic sclerosis, with about 1-2 diagnosed people for every 100,000 citizens fits the bill. To be rare means your illness struggles for research and treatment funding as the patient population is small and almost no one is personally impacted by the disease in the general population. Hence, Scleroderma Awareness Month and World Scleroderma Day. Thank you, Niagara Falls!!

Auto-Immune Disease: The immune system, designed to protect us from foreign invaders like pathogens,  is attacking some of the components of normal cells in scleroderma patients. The exact components can be identified using the antibodies of scleroderma patients and they are essential proteins found in the nucleus of the cell. My antibodies are attacking a protein found at the kinetochore of dividing chromosomes. I can’t help but wonder what the heck has happened here that I ended up with antibodies like these? I also eventually wondered if my cancer risk is increased since there is something off with this critical structure used in cell division (it is).

Connective Tissue: I used to try to explain this type of tissue to my AP Biology students. Connective tissue… well… it connects. It is what holds your bones together to form the skeleton. It gives support and stretchiness to your skin. It is involved in all the organs of your body, and holds the organs in systems together. It is essential to organize your muscles. In systemic sclerosis, all of this tissue can be involved in an inflammatory attack of the immune system and scarring occurs. Skin gets thick; hands curl, joints won’t bend, smiles  twist and faces harden. Muscles and joints hurt. The smooth muscle in the digestive tract can be so damaged that organs don’t work right. Blood vessels are damaged and spasm, cutting off circulation to extremities and organs. The heart can get scarred. Scarred lungs prevent oxygen passage. Scleroderma, invisible to the outside viewer, can be devastating to the patient.

Vascular tissue damage causes circulation loss to my fingers and toes (Raynaud’s Phenomenon) which I fight by wearing fingerless mitts and wool socks. Works great and the Zen of knitting brings its own benefits.

Chronic: There is no cure, and it never ends. There are, however, treatments for individual impacted organs that are really helpful.

Progessive: Damage accumulates over time and conditions worsen. My doctors are monitoring my kidneys, heart, lungs and GI system. So far I am doing pretty well, but my GI tract is taking the most damage.

Disabling: Yep. It is getting really hard to walk, and I just don’t fit all that well into the world anymore since my diet is very restrictive, air conditioning isn’t my friend, and sunshine makes me go into a flare. Right now I don’t need supplemental oxygen, but if that comes back it will further restrict my independence.

Life-threatening: It took me months to think this one through, but eventually I did google “life expectancy of systemic sclerosis” and discovered that for me, with my treatment plan and risk factors, survival rate is about 75% for 10 years after diagnosis. Overall the death rate of scleroderma is 50%. Oh. Now I know. Who wants to live forever?

This week I wrote a letter to my congressman asking him to sponsor a bill that would fund research into fibrotic diseases like scleroderma and cystic fibrosis. I haven’t heard back, but maybe if he has heard of one of these diseases or knows someone impacted by scleroderma he will do it.

That’s why we do World Scleroderma Day.

Return to the Garden

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.

I guess the Miracle Go, cool days, and all that moisture was what the front flower bed needed. The miniature snapdragons came back from last year and I’m pretty sure that there are more plants than I put into the ground, so some are seedlings. The roses look better than I’ve ever seen before!
Hot Cocoa roses.

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!

The Princess Alexandra of Kent rose is producing the largest blooms that I’ve ever seen on this plant!

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.

Please allow me to present the “One Rose to Rule Them All” that has taken over the back garden.

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 warped up the seat of the chair with 20 lb clothesline that was advertised as “sag-resistant” and “easy to knot” after detaching the frame of the seat from the swing.
I cut lengths of line to do the weaving and knotted each line to the frame after weaving it through the weft.

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.

Ta-daa! It is done, the seat is absolutely perfect (not even a little sag!), and I am back into my garden.

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 back in my garden people! Life is good.

MacKenzie Speaks: Busy Days

Hi. I’m MacKenzie.

Cat helping hold yarn.
Do you see how much help I am to the Mother of Cats? 

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…

Cat munching on catmint in the garden.
The very best thing about summer is that I can get back to my catmint!! I can take naps under this plant when I’m not snacking on it. Next time I chat with all of you about the yard I’ll send some pictures of the flowers. The Mother of Cats likes the flowers, but for me, it is ALL ABOUT THE CHOMPS!!

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?

Cat sleeping with ball of yarn.
But she does let me take care of her yarns while she is knitting in the afternoons.
Cat asleep with knitting.
This knitting is also a blanket for me while the Mother of Cats is taking a break. I kind of like this shawl. It is going to be really big when it is done. My new Blankie!!

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!!

Arm warmers in progress.
I don’t know when she will wear these as it is pretty warm these days, but you never know. For some reason she was just on fire to get these all knitted up. Here are the socks that they will match.

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.

Cat snoozing with hamster.
I love my mouse! I spend a lot of my time right by the mouse cage every evening when she wakes up for the night. She makes me happy, and the best thing ever is that she RUNS IN A WHEEL! She even has her own little cookies to eat. Miss Pitty-Pat is my best friend these days.

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.
Yarns for shawl.
Check out the yarns! And no, this new shawl is NOT a blankie for MacKenzie!
  • 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…