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…

The Scleroderma Chronicles: The Ankle Adventure

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Scleroderma Chronicles: Flares and Zebra Nonsense

My last flare started sometime in the depths of December and dragged on for almost two months. It’s hard to begin to describe what is happening to me as my illnesses (systemic sclerosis and Sjogren’s Syndrome) intensify and the walls of my world gradually close in as I descend into the ever-deepening abyss of escalating illness. Always unpredictable, it starts before I am even aware that I am in trouble and before I know what’s up I’m a hot mess. Even now, as I write this, I can’t recall what the first true symptoms are, but I’m pretty sure that in the middle of my usual challenges with pain, fatigue and dryness the other problem children creep in the door and take me down before I even know they are there. As the flare builds momentum new symptoms erupt daily including:

  • Shortness of breath – I literally start panting every time I move
  • Gastritis that makes my stomach burn whenever it is empty, and
  • Gastroparesis that makes my stomach hurt whenever I eat
  • Intense itching and eruptions of eczema
  • Hair loss
  • Crushing fatigue
  • Sleep interruption
  • Swollen joints that won’t bend in the morning, and
  • Burning muscles that are too sore to touch
  • Brain fog and disorientation that makes me afraid to drive and unable to read
Edema on arm.
 Oh yeah. There is edema, too. Check out this arm!

Flares are a test of patience, but they always do come to an end for me. Somewhere towards the middle of February, for no reason that I can put my finger on, I slept soundly through the night. Wow. That was great, I thought. A couple of days later I realized that my energy was coming back and that my stomach didn’t hurt any more. After a week I took a shower and there wasn’t a wad of hair deposited in the drain. My thinking became clear, my driving fearless, and my muscle pain and swollen joints receded to background levels.  The itching stopped, the eczema disappeared, and I stopped using my inhaler. It was over; the storm had passed.

When I mentioned to my rheumatologist last month that I was having these flares things suddenly took a left turn and my whole appointment went off the rails. She first told me that there wasn’t any treatment that was more effective than what I was already receiving. (I know that, my systemic sclerosis is pretty stable, and I am grateful. I think that it is Sjogren’s causing all the trouble, but it has to ride in the treatment back seat since it probably won’t kill me.) Then she reminded me that I always mentioned my fatigue and muscle pain, and that maybe I should be tested for sleep apnea or given antidepressants. Suddenly, instead of talking about the conditions for which I was already diagnosed, we had to talk about depression and sleep apnea. I was defensive and almost in tears. It took days to process what had happened there.

MacKenzie the cat.
The poor Mother of Cats needed extra attention for a few days…

It all boils down to two essential truths. I am a Zebra. I have been betrayed by a medical system designed to treat commonly occurring conditions when I suffered from a rare disease. I have had my symptoms dismissed, disparaged, or ignored for literally decades. For my rheumatologist, who I like and trust, to do this suddenly threw me back into a defensive, victim-like posture. I will not let this happen again.

The other essential truth is that it is insulting and counterproductive to cherry-pick out a couple of symptoms from the entire package that I call a flare, concentrate only on them, and then build a diagnostic hypothesis that addresses only those isolated symptoms. Yes, I do have muscle/joint pain, fatigue, and sleep disruption, but let’s not forget about the gastritis, itching, hair loss, edema and shortness of breath. Once I am out of the flare, my sleep is pretty good and my fatigue is much reduced. I know that my rheumatologist wants to help me, but I’m going to insist that we stick to the data and that logic and reason are employed as part of my treatment plan. Even if that plan includes a clause that says… you are currently receiving the best care available and there is nothing else we can do for you because scleroderma and Sjogren’s sucks. Well, all right then. Give it to me straight, because I can handle that, but don’t hunt for ANOTHER condition that you can medicate without better data.

Because I don’t have sleep apnea. I’ve been tested twice in the last three years. I wear a Fitbit that shows that I’m in deep sleep for 1-2 hours a night and that I’m almost motionless all night long. It is time to put that hypothesis to bed and to spend more time talking about things like this lupus-like rash that has appeared on my face…

I’ve also been checked for depression and I’m fine. Yes, I am aware that MOST chronically patients need help with depression, but that doesn’t mean ALL patients require additional drugs.

After all, I’m self-medicating every day with knitting!

I finally decided to write about this experience in my chronically ill life in case it could help someone else. Okay, I also needed to vent a little!

Should I perhaps knit a little something for my rheumatologist? It must be hard for her to treat patients every day who are dealing with painful, progressive and incurable diseases; no wonder she sometimes grasps at diagnostic straws hunting for a way to help.

But if she does it again this Zebra is ready to deal with that nonsense!