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 Yard Destash Resolution: Half Year Report

It’s summer now. I can hardly believe it, things have gone by so quickly. I’m feeling pretty darn good these days and have been steadily working my way through projects around the house and in the yard. It is cutting into the knitting time, but I’m still being pretty productive.

Mr. Demanding is hanging out with me in the yard while I work on projects out there.

Yep. I’m out of the flare! It was only about 2 weeks this time, which is something like a record. I credit my dermatologist and the new antibiotic/anti-inflammatory that she started me on for this. Scleroderma/Sjogren’s/fibromyalgia begone!! Okay, they are still misbehaving on a daily basis, but I have energy, my brain fog is gone, and I am up doing stuff every day. Good days.

Anyway, back to the knitting and the yarn destash project. Back in January I cleaned and organized my stash, gave myself a good mental shake, and resolved to use/remove at least 50 skeins of yarn from the stash. I made great progress over the winter, had a little slip when I went to the Interweave Yarn Fest, and have been catching up from the setback since then. Here’s what I have finished since my last report:

I finished up my V-Neck Boxy sweater by Joji Locatelli. Skeins used: 3
I cranked out this Nordiska sweater by Caitlin Hunter pretty quickly. I love, love, love the colorwork in this one. Skeins used: 3.
I collected the yarns for a pair of No. 5 Union Street socks to match some new shoes. Then I made matching arm warmers. There was still yarn left over, so I made some mitts. I still have some of the silver grey and bits of the others… a cowl? I’m having so much fun! Total skeins used: 2
I’m also cranking out socks with single skeins of yarn that are lurking in the stash. This was a colorway from Chasing Rabbits produced for my LYS called Colorful January. Skeins used: 1

I still have a some projects on the needles: a Suburban Wrap, a What the Fade?! shawl, and another pair of socks. All this knitting brought me up to 25 skeins used this year, so I am right on the pace to meet my resolution.

Tomorrow is my DIL’s birthday so she took a tour through the stash hunting for some gift yarn. Woohoo! She took 5 skeins of yarn that I don’t really love or have a specific project for, and three skeins that will make a fabulous Suburban Wrap of her own; those three are a set that I love and felt a pang in letting go, so they make the gift.

All of this yarn headed out the door with my DIL this afternoon. Yay!! The three on the right will become the Suburban Wrap  and the others were colors that I bought for her in the first place or didn’t love anymore. I’m so happy that they are going to a good home.

There has been a surge in the Destash Resolution project. With the skeins that just left the building I am now up to 33.5 total skeins used/removed this year. Yay! Some of those yarn bins are getting kind of empty and it will be time to reorganize the stash soon. I already have two sweaters and another wrap organized and waiting to move into the knitting workroom, and the goal of 50 skeins is suddenly in reach. Woohoo! Maybe I should up the total?

Best to not get cocky! I’ll just keep knitting on and let’s see what happens.

Happy 4th of July everyone who is celebrating that holiday.

Barking Dog, Yowling Cat

When I was a girl my grandmother had a little phrase to describe someone who was acting crabby (little me, of course) as having gotten up “on the wrong side of the bed.” You know what she was talking about. A person being constantly irritated by a never-ending series of triggers.

Today I woke up pretty sore, crawled down the stairs to make my morning latte, and once I had pulled myself up the stairs and back into bed I found a post from another blogger, NothingButKnit, on my phone called Things That Are Bugging Me Right Now: A List. Oh. A list of all the things that are bugging me right now. Wow. Where do I start? There are so many things that bug me. Yippee, I can do this!!

NothingButKnit had only 4 things on the list. Gee. She is kind of a light weight, don’t you think? I mean, there are so many things that are bugging me at the moment it is impossible to prioritize them, but I can certainly try.  Ignoring all the things happening in politics and current events, which are their own exhausting list that force me to call or write my congressmen EVERY STINKING DAY, and excluding my trifecta of autoimmune diseases, here is my own list:

  • Robocalls. Seriously. How many times do they think I need to be informed that this is their last attempt to contact me about my insurance. Especially since it is several times a day. This is why nice people can’t turn on their phone ringer.
  • Food packaging that I can’t open without dragging in the tool box from the garage. Don’t laugh. I have half of the toolbox in my kitchen drawer at this point. The big stars are the rose pruners and a pipe wrench.
  • Hailstorms! I bought a new car last summer and I’m pretty nervous about hail. A few weeks ago I got caught in a storm that dumped 4″ of hail; I was pumping gas when it started and was able to stay under shelter. Last week there was golf ball-sized hail. I don’t even want to think about baseball-sized hail…

    I grabbed a picture early in the storm. Those stones are 1/2 inch across. 
  • Bindweed. This plant grows at virtually the speed of light, swallows rose bushes overnight, and never dies no matter what I do. Stop bugging me, bindweed!!
Sigh. I’ve resigned myself to pulling weeds for 30″ a day. It’s best in situations like these to just keep chipping away at the problem without looking at the big picture.
  • Yowling cats. Cats that belong to my neighbors wander into my yard, roll in the cat mint, and sleep in the best cat sleeping spots in the yard. They also stop by the ground-level windows to chat with MacKenzie. How sweet. Especially at 4am. I love the sound of hissing, smacks on glass and yowling in the morning, don’t you?

    MacKenzie also yowls every morning to let me know that he wants to go out into the garden for a nap. He loves his garden. I can’t let him out unless I can supervise him because of the stray cats and the dog next door, so he only gets to go out while I’m pulling weeds and watering. “Stop yowling!” I tell him every morning. “Let me out now!” MacKenzie yowls back. It’s like having a toddler again.
  • Barking dog. Ugh. The neighbor next to me got a sweet little puppy three summers ago that grew up into a territorial barking, growling, fence-charging Pitbull nightmare. After months of work she no longer goes berserk when I go into the yard, but if this dog sees a cat… it gets scary. The dog has chewed a hole in the fence that she can stick her face through. All the better to watch and bark at the cats that come visit my yard and MacKenzie. When she sees a cat she growls, body slams the fence and barks furiously while tearing at the hole in the fence.

This week I was outside pulling weeds with MacKenzie (between thunderstorms with the phone ringer off) when the dog suddenly saw him through the fence. Oh, oh. The dog got her face through the fence, the growling and barking commenced and I started running towards MacKenzie to see if I could shoo him away.

Nope. MacKenzie snapped, charged the fence from his side and went into total feline fury mode. In stunned amazement I watched my geriatric cat hiss, slash, and crash into the fence in a frenzy I’ve never witnessed before. I’m sure there was yowling, too. Every time the dog put her face through the hole, he let her have it again. Just as I was heading to get the hose the dog broke off the attack and it was over.

Mr. Victorious

The dog’s face was slashed in several places and she hurt herself trying to get more of her jaws through the hole. Luckily, she wasn’t able to get a good bite on the cat.  MacKenzie, two claws ripped off and toe pads damaged by hitting the fence, stalked off to take a nap in a nearby (unweeded) garden patch. The dog’s owners now keep her inside to PROTECT HER FROM MY CAT and they repaired the hole in the fence that very night.

Be like MacKenzie, I tell myself. Don’t let things bug you too much. Defend yourself and smack down the things that you can, and spend the rest of your time sleeping in the garden.

Excuse me, I must head out to pull some more weeds, then it is knitting time. Maybe I will listen to an audiobook with my new sound-cancelling headphones while I knit. Outside, on my swinging garden seat, with my roses.

Robocalls, hailstorms, weeds, barking dog and yowling cat, begone!!

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: An Autoimmune Zebra

“When you hear hoofbeats, think of horses, not zebras.”  ~medical school proverb

Zebra ~medical slang for an exotic medical diagnosis

Author as 16 year old student.
16 years old: my last year illness-free.

As a teenager I struggled with eczema and was photosensitive; I was started on steroids, told to wear long sleeves, and to stay out of the sun. Without a clear cause for my eczema/rash I told that I was high strung and unable to handle stress; if I could control my emotions I would see my symptoms disappear. Eventually I did get better, the drugs stopped, and my life went on.

In my early 20s I had my first asthma attacks. I didn’t really understand what was happening, it was always in the night, and the doctor couldn’t find anything wrong. I was told to handle stress better. Most of the time I was okay, so I just learned to deal with it.

In my early 30s my knees began to swell and become painful. There were lumps below and behind my knees. I had an ultrasound to make sure the worst lump wasn’t cancer. I was told to do special exercises and to stick to low impact. My eyes hurt and I couldn’t go outside without sunglasses. Clouds of floaters swam across my vision. You have allergies, said the doctor. My finger was too fat for my wedding ring so I resized it.

In my 40s my hands became numb and swelled. I had a lot of pain and struggled to manage routine tasks. Carpal tunnel, said the doctors: it’s a repetitive motion injury and you did this to yourself. I had the surgery on both wrists and my hands did get better, but I still struggled with swelling and numbness, even in my feet. I developed a rash on my face. Rosacea, said the doctor. My knees still hurt. I started to develop high blood pressure. Control your diet and exercise, said the doctor. My fingers became too fat to wear any of my rings. I was tested for autoimmune antibodies associated with rheumatic diseases (anti-nuclear antibodies), but the result was only mildly positive so it was dismissed as not significant.

In my 50s my knees were so bad I had to take ibuprofen every day to function at work. It hurt to breathe in the mornings, and I had several cases of bronchitis that required an inhaler and steroids to recover from. I developed pleurisy. I was also told that there was nothing wrong with my lungs, and that I needed to get better shoes. My face and jaw hurt so much I couldn’t sleep. TMJ, said the doctor. You need to handle stress better. My kidney function dropped to 35%, alarming another doctor. You damaged your kidneys taking ibuprofen, I was told, and you can’t take any more.  I changed my job so I wouldn’t have to stand so much at work. My blood pressure continued to rise in spite of changes in my diet and exercise; I was placed on a beta blocker to control it. I developed Raynaud’s phenomenon; don’t worry, I was told, it is a side effect of the beta blocker. I wondered why I wasn’t getting wrinkles like my friends. The rash on my face was getting worse.

In my early 60s I noticed that my arm was getting “thick” and that I sometimes couldn’t complete a swallow; food became “stuck” mid-gulp. I complained about dry mouth. My fingers turned blue in the cold. I was hospitalized with severe gastritis. I was stalked by fatigue and my knees hurt every single day. My fingers were too fat to make a tight fist. Unable to function at work, I retired early. I developed colitis and rarely left the house. Testing showed that I didn’t have an intestinal infection, and my doctor didn’t pursue things any further.

Struggling with life and my early retirement,  I grew roses, read books, knitted, and launched this blog.

One night the light went off for me. I had joint pain, kidney damage, intestinal woes, Raynaud’s, a rash on my face, and a positive ANA. I walked in and demanded testing for lupus.

How is it possible, asked my doctor when confronted with the list of symptoms, that you haven’t already been diagnosed? Shocked that I had slipped through the cracks for years, my doctor immediately ordered the complete diagnostic battery for rheumatic diseases. It wasn’t lupus after all, but a couple of relatives: scleroderma and Sjogren’s syndrome, two rheumatic systemic diseases that unified all of my symptoms. The decades-long string of mystery complaints was over, and I was started on aggressive treatment for these two autoimmune diseases.

How was it possible that I hadn’t been diagnosed earlier? Isn’t that a wonderful question! How could I have slipped through the cracks year after year as I struggled with pain, respiratory infections, dysfunctional hands, eye problems, TMJ, and all the other medical woes that had parked themselves at my door? Why was there no diagnosis when, as I was to learn later, I was an absolute classic case of limited systemic sclerosis, a type of scleroderma, and that my Sjogren’s was obvious and well established.

In retrospect, the answer is glaringly obvious: I am not common. I have a rare disease (systemic sclerosis), and even though my doctors were well intentioned, they dismissed my symptoms when I didn’t fit the usual diagnostic profiles. I was a zebra in a herd of horses, ill-behaved and refusing to fall into line with their medical school training. Since I couldn’t be diagnosed with any of the normal causes for my symptoms, doctor after doctor concluded that they must be due to something else, like maybe stress… or lack of exercise… or my choices in pain medication. Time after time, I was assigned the blame for my own illness because of my inability to “handle stress”, repetitive motions, bad shoes, lack of exercise, taking ibuprofen, or any other excuse reasonable explanation that came to mind when my symptoms could not be ascribed to common causes. My doctors had been trained to ignore zebras, and these other causes were more plausible to them.

The other reason this happened was because my symptoms were always presented to my doctors in isolation: chest cold, painful eyes, knees that won’t bend, and so on. Symptoms that emerged over decades, and were presented to different doctors. No one saw the big picture until I finally pieced it together myself and then my doctor was shocked by the list: grouped together my symptoms screamed autoimmune rheumatic disease.

Why am I reflecting (and writing) about all of this? This month, March, is National Autoimmune Awareness Month. My story is one that is shared by many, many other people who deal with autoimmune illnesses. One of my diseases is rare (scleroderma), but the Sjogren’s and fibromyalgia are not. In a way, to have an autoimmune disease is to be a zebra because these conditions are elusive, can present themselves with a battery of symptoms that are seemingly unconnected, and don’t respond to the usual courses of treatments like antibiotics, diet and exercise. They can take, just as mine did, many years to diagnose. For many autoimmune patients, they are, just as I was, zebras crying for help in a herd of horses. Trained to treat horses, doctors don’t always hear the cries. One way to combat the problem is to educate the zebras so that they can, just as I did, recognize and group their symptoms together in a meaningful way to present to their doctors to help them make the diagnosis. Autoimmune Awareness Month is meant to educate everyone who might deal with an autoimmune disease: patients, families, caretakers, and doctors.

In my family we know these illnesses well. My grandfather died from complications of rheumatoid arthritis and my father had disabling allergies. I have scleroderma, Sjogren’s syndrome and fibromyalgia. My son has type-1 diabetes and my daughter-in-law has multiple sclerosis.  In all of these illnesses there is an immune system that is attacking normal tissue in our bodies; for some of us the attack is moderated by drugs that are designed to disable parts of our immune systems, but it continues nevertheless. Unless there is a cure the damage will continue to accumulate in our organs and tissues. These are the words that are often used to describe autoimmune illnesses such as ours: disabling, progressive, incurable, potentially fatal.

We aren’t alone. There are around 50 million Americans who also have autoimmune diseases. There are over 100 different autoimmune diseases and the need for research, support and treatment is endless.

You can learn more about autoimmune disease at these resources: American Autoimmune Related Diseases AssociationNational Institute of Allergy and Infectious Disease  ,   and Autoimmunity.

The Scleroderma Chronicles: Invisible (Star) Wars

I’m a big fan of the movie Star Wars. Seriously. I remember the first time that I saw this movie; we stood in line for hours, laughed at the droids, were amazed by the special effects, wished we had the Force, held our breath as the tension at the end of the movie mounted, and cheered wildly when the Death Star blew up. Over the next year we watched the movie 13 times in the theater, memorized the sound tract, and to this day I hear snippets of dialogue echoing in my mind…

Star WarsLike this line said by the droid C-3PO to his buddy R2-D2 as they escaped from their badly damaged and captured ship to carry out a secret mission as directed by Princess Leia:  “That’s funny, the damage doesn’t look that bad from out here.”

Author
Bundled up in wool and staying warm. You can’t see my stage 3 kidney disease, interstitial lung disease, struggling gastric and intestinal organs, burning muscles, painful joints, brain fog, and my truly astonishing fatigue.

That’s me. Badly damaged on the inside, not that bad on the outside.  The curse of all people who have an invisible illness. People often say, when they learn about my illness, something along the lines of… “Well, you look great!” It’s nice to hear, but it also suggests that I’m not really that sick.  I can’t help but feel that they think that I am an attention-seeking hypochondriac. Sigh.

Raynaud's
You have to admit, the visible symptoms are really subtle. It can be as little as lost circulation in a finger: Raynaud’s phenomenon. What can’t be seen is that I’m also experiencing circulation loss in my lungs, kidneys, brain and other organs.
Edema on arm.
A poor dietary decision can hit me hard: dizziness, muscle pain and edema in my arms. I ate cheese enchiladas at my favorite restaurant this time.

It is amazing, really. How can the damage not look that bad from out here? I struggle for air. I often lack the energy to get through basic tasks. Pain stalks me waiting for a poor decision on my part that will give it an opening.  An incoming weather front pushes me over a cliff. Holidays can be the worst as I struggle to manage my energy resources, diet and exposure to cold. I can get through the Christmas dinner okay, but the next two days are spent in bed sleeping myself back to functionality.

And yet, I’m starting the New Year feeling pretty darn chipper, well… as chipper as you can after a 12 hour nap and a strong latte to launch myself into motion. See, I can get back to functionality. I’m on great drugs and I have wonderful doctors. My latest round of medical testing shows that I am tolerating my drugs well, and my disease progression has virtually ground to a halt. I am making some gains. I spend a lot of time managing my symptoms and hoarding energy resources, but I am not getting worse. Some really scary words on my chart have gone away over the last year: chronic respiratory failure, pulmonary arterial hypertension, and severe kidney disease are no longer there. I have wonderful friends and supportive family members. I am still independent and can get out to social events.

MacKenzie the cat.
I have the world’s bossiest cat to tend to me…
Rose.
and my indoor roses are blooming.

The rose bush is also struggling and covered with mildew. Sigh. It’s like a metaphor for my life. Bloom where you can, and pretend that all this other damage isn’t happening over there… Jedi mind tricks can be useful when dealing with implacable enemies like scleroderma and mildew.

Use the Force! I hear in my mind. If you know the movie Star Wars and the other movies in the series, it is a tale of heroic underdogs battling against great and evil foes, desperate times, hope and change.

I don’t have a light saber, but I have knitting needles.

I don’t have the Force (an invisible energy field created by all living things), but I have an online and real network of people and other living things that connect to me and support me. I have science and time on my side: new drugs are on the way and some of them are in new rounds of clinical trials. Remember the movie poster? A New Hope. Yep. Every year brings me a new edition of hope.

My illness is mostly invisible. The battle is real. Bring it on, 2019, I am ready for you!

Cat

Footnote: Perhaps you are wondering… whatever does she have? I was diagnosed with Limited Systemic Sclerosis and Sjogren’s Syndrome in 2014, and those two conditions carry with them a host of complicating conditions such as Raynaud’s, colitis, gastroparesis, interstitial lung disease, kidney disease, heart disease, oh my lord, and a partridge in a pear tree. In 2016 I was referred to palliative care and told to make final plans; Myfortic (CellCept) saved the day and I was discharged from palliative care a few months later. In 2018 my rheumatologist added fibromyalgia to the list and there is an ongoing discussion about dermatomyositis. Why do these autoimmune diseases throw parties and invite all of their friends?  It’s like the bar at Mos Eisley Spaceport with all the strange aliens.  As Obi-Wan tells Luke, “You will never find a more wretched hive of scum and villainy. We must be cautious.” I don’t have a blaster, but I think that in this case the drug Myfortic will do the job!