The Scleroderma Chronicles: Rare Disease Day 2018

It seems like I just wrote a “rare disease day” post just yesterday, but it has been a whole year already. Actually, I think that I was really lazy last year and just re-posted the previous year’s blog post. Anyway, tomorrow (February 28th) is World Rare Disease Day. This year the motto is “Show Your Rare”, which is a little scary as it sounds vaguely like how I might order my steak, but I’m game. I’m rare, and here is my story.

First things first. Let’s talk about rare diseases. Here in the United States, a rare disease (also known as an orphan disease) is one that affects fewer than 200,000 people in the US. The bad news is that there are a lot of rare diseases; over 6,000 different diseases that impact about 25 million people just here in the US. Many of these are genetic in nature, and they tend to be chronic (more about that later).

I joined the rare disease club the day that my systemic sclerosis (a form of scleroderma) was diagnosed. With only about 100,000 cases in the US, we are definitely rare. Here’s the scoop on my disease: it is progressive, disabling, chronic, and possibly fatal. It shares some characteristics with cancer cells. It is also mostly invisible to other people, and people have no frame of reference to understand an illness that they have never heard of before, so they tend to be dismissive.

Scleroderma hand
One of the most obvious features of my condition is my thick skin. My legs and lower arms are literally hard, and here on my hand you can see that the skin folds kind of strangely. My skin is thick with scar tissue that has built up in response to inflammation set off by my immune system’s attack on normally healthy tissue.
You can really see it on this finger. My finger looks pale since the scaring is so bad it cuts off circulation when I hold it out straight. There is a silver lining to this: I will never have “old lady” hands.

My hands look strange, but I am doing really well all things considered. I have good circulation and flexibility which my doctors think is due to knitting. “Knit as much as you can!” was the recommendation. See, every setback in life has a silver lining.

What can’t be seen is my astonishing fatigue, muscle/joint pain, and brain fog. So much brain fog. I’m also accumulating organ damage as the months pass by. Digestive system damage, kidney damage, lung damage, and blood vessel damage that is slowly increasing the pressure in my heart.

Scleroderma face
All that redness on my face is due to blood vessel damage, and you can see the thick skin around my eye. Collagen build-up has given me chipmunk cheeks. Special. Thank heavens for red-cancelling make-up.

It’s like a scene from the movie, The Terminator. You know… if you substitute this line about the Terminator from the movie with the word scleroderma it would be… [Scleroderma] can’t be bargained with. It can’t be reasoned with. It doesn’t feel pity, or remorse, or fear! And it absolutely will not stop, ever, until you are dead!

Mortality rates are down for my form of the disease due to new drug interventions. The other good news is that it is moving really slowly in my case. I think that I have had this disease for decades, and only now, in my 60s, is it catching up with me. I’m on the best drugs available, I love my doctors, and they have slowed the disease progression down tremendously over the last couple of years.

But I’m still dealing with a serious chronic illness, as are many other people with rare diseases. For me, when trying to explain my illness to others, it is the concept of “chronic” that causes the most trouble. People tell me to get more sunshine, more exercise, better food, use essential oils, whatever, so that I can get better. That’s the way it is for many health conditions, but not for a chronic illness.

There is no better, I tell them. Only this. Nope. They will insist that I can get better if I just try, and take it as defeatism when I calmly explain that some of this damage can’t be reversed. It is possible to get better without getting well, they will say. You look so great! It’s like it’s a personal affront that I can’t just be cured. If they haven’t seen me for a few months they will express surprise that “this is still going on”.

It is the concept of “chronic” that is the problem. To accept that you are sick is not weakness or “giving up”. It is coming to terms with the nature of your enemy.

So here is my Rare Disease Day request for anyone who has managed to read all of this. Accept chronic. Ask the person you are talking to about how they are doing. Ask what their doctors are telling them. Accept that they are in a situation that they can’t escape from. Don’t shy away from the fight if you care about that person.

If you know the movie “The Terminator“, you know that the heroine of the tale, Sarah Connor, was a hell of a fighter. She never, ever gave up, and in the end she got the best of the monster trying to do her in.

I’m channeling Sarah Connor.


Happy Thanksgiving: Arm Warmer Mitts Pattern

All week I’ve been getting ready for the holiday tomorrow. The turkey is in the fridge (and at exactly 2pm tomorrow afternoon he will slide into the oven!), the pies are on the counter, and the rest of the fixings are patiently resting in the fridge. All the cleaning is done except for the last minute vacuuming (hello… cats!), and even the stash has become organized. Through all of this I have also been churning out long mitts that are also arm warmers. It’s cold now. I need arm warmers!!

Hand in MItt.
Look at how cute these are! This yarn, Western Sky Knits Magnolia Sock, is 10% cashmere. Yum!!

I have Raynaud’s syndrome; when I get cold I lose circulation to my hands, feet and even my face. It can happen really quickly, too. Look at what happened to me while shopping in the produce section of the grocery store last night!

I was picking out fruit and salad from the refrigerated cases when I realized I was cold and my hands were numb. Yep. Raynaud’s attack. I finished my shopping with the sleeves from my hoodie pulled down over my hands.

During the winter I cope by wearing lots of simple layers that can be easily adjusted to adapt to changing conditions. Since I’m a knitter I have lots of socks, hand warmers, and shawls that I can layer on with reckless abandon. Seriously, I’m a walking knitwear advertisement in cold weather. I’m thinking about leg warmers for under my jeans and for my arms… arm warmers!!

The perfect product would be simple arm warmers that could be pulled down over my hands and fingers if I need it (so I put in a slit for my thumb), but could also be worn pulled up my arms to keep my hands free for household tasks like when I’m working with water or cooking (with cold things from the fridge). The warmers also needed to be long enough to pull up my arm, but should also be able to just bunch around my wrist. Snug enough to slide under sweaters, but loose enough to slip over gloves. Multi-purpose warmness. Take that, winter!

So here there are. I’ve made three pairs so far and I have another pair on the needles. I am just rocking these guys.

Arm Warmer Mitts
The yarn with color stripes is Chasing Rabbits Fern yarn. The fern is a little thinner than the Magnolia sock, so those warmers hug my arms better. The cashmere ones are just wonderful to wear while reading (and knitting) in bed. I love these mitts!! My Ravelry project notes are here.

As you can see, I have many things to be thankful for. My hands aren’t great (thanks, scleroderma), but they work for knitting, and because I knit I’m in better shape than most other patients with my condition. I have Raynaud’s, but because I knit I am able to create product that help me beat it into submission. I am knitting in a time of absolutely fabulous Indy dyed yarns that make me happy with every single stitch. The fabulous colors in the yarn mean that even a simple stockinette item looks great. I am thankful. Very, very thankful.

Hey, maybe you would like some mitts too! Here’s the pattern.

Arm Warmer Mitts

Needles: size 1 (2.25 mm) double point or cable needles. I used 2 16″ cable needles and split the stitches between them. Adjust my directions to fit your needle choice.

Yarn: Fingering or sock yarn. These mitts each took about 250 yards.

Right Hand:
1. CO 72 stitches using Old Norwegian CO or any other CO that you are fond of. It needs to be a little stretchy. Join in the round with 36 stitches on each of 2 16″ circular needles. Mark the start of the round.
2. Complete K1P1 ribbing for 12 rounds.
3. Knit rounds in stockinette until mitt length is 4.5 inches from the CO.
4. Decrease: K5, K2tog, PM, K1, SSK, K rest of the round. (70 stitches)
5. K rounds for another 1.5 inches.
6. Decrease: Knit until 2 stitches before mark, K2tog, SM, K1, SSK, K rest of the round. (68 stitches)
7. K rounds for another 1.5 inches.
8. Repeat steps 6 and 7 once, and then step 6 once more. (64 stitches)
9. Thumb opening: turn the work at the end of the round and purl back on the WS to the start of the round. (remove the mark when you come to it). Turn the work again and knit the RS to the start of the round. Continue turning the work and working rows in stockinette (purl on the WS, knit on the RS) until the thumb gap is 2.0 – 2.5 inches long; check fit on your hand and knit until you like the size of the gap. End with a RS row.
10. Return to knitting rounds. Knit one round, closing the gap for the thumb.
11. Complete K1P1 ribbing for 11 rounds.
12. CO in K1P1 pattern making sure it won’t be too tight around your fingers when worn.

Left Hand:
Complete steps 1-3 as for right hand.
4. Decrease: K 62 stitches (10 stitches left in the round) K2tog, PM, K1, SSK, K to end. (70 inches)
5. K rounds for another 1.5 inches.
6. Decrease: K until 2 stitches before the mark, K2tog, SM, K1, SSK, K to end of round.
7. K rounds for another 1.5 inches.
8. Repeat steps 6 and 7 once, and then step 6 once more. (64 stitches)
9-12. Same as for the right hand.

Weave in the ends. Add buttons or other embellishments to mark the tops of the mitts if you wish.

The finished mitts are 12 inches long, 4.5 inches wide at the top and 3.75 inches wide at the lower (hand) edge.

Happy Thanksgiving everyone!  May your day be a good one, and stay warm!

The Scleroderma Chronicles: Year 3.0

My, how the time flies. Not that I’m having a good time here, but it is hard to believe that it has already been three years since my diagnosis of limited systemic sclerosis (AKA scleroderma). I’ve been reflecting on the last year while planning this post, and decided that I should start out with a little info about my disease, share the highlights of my three years, and then give unpack this year a little.

But first, a butterfly picture! Butterflies have hard skin, and they are doing OK. Be like a butterfly, I tell myself. This little lady was part of a massive migration of butterflies that came through our state in the fall. Seriously, there were so many of them that they showed up on the weather radar and the NWS put out a bulletin asking the public to identify the bird species: not birds, but butterflies.

Scleroderma is an autoimmune disease that is chronic (no cure), progressive, disabling and possibly fatal. It is rare, which is why you probably never heard of it. The name itself means “hard skin”, and that is one of the most distinctive features of the condition. The widespread scarring and buildup of collagen protein that causes the hardening of skin also occurs in internal organs in patients with the “systemic” form of the disease like me. Most of the damage is hitting my intestinal tract, but my lungs, kidneys and heart are also sustaining damage. In the background, hard to see, but never to be ignored, is damage occurring in blood vessels that can cause blood pressure to soar and places me at risk for blood clots.

I have collected several doctors over the last three years as damage continues to slowly accrue in my lungs, kidneys and intestinal tract.

Here are the highlights of my first three years:

  1. My first year was one of shock and horror. I was so worried about tightening skin and the use of my hands that I didn’t ever think about the bigger picture. I was started on drugs, stabilized, and felt much better by the end of the year.
  2. The bottom fell out my second year. I was using my hands okay, but I developed breathing problems, had to be placed on oxygen, and my heart started to misbehave. Adjustments were made to my medications to compensate for my lowering lung volume and to slow the rate of lung damage. At the lowest point I was sent to palliative care and told to make final decisions.
  3. This year, the third, has been one of highs and lows. The new medications kicked in, I came off oxygen and my chest pain stopped. I was discharged from palliative care. I developed gastroparesis and had to move to a very stomach-friendly diet. I stabilized and sailed through the first rounds of appointments in the spring only to develop kidney problems in the summer along with higher pressure in the artery that goes from my heart to my lungs. This blood pressure, which is called pulmonary arterial hypertension, is extremely damaging to the heart and will need to be addressed if it gets any higher. Fabulous. Another doctor.

My summer this year was really hard. I got very dizzy, developed joint pain and sore muscles, and eventually got so brain fogged that I was afraid to drive. My knees were swollen and developed sharp, shooting pains; I will need to buy a new car if this keeps up as I can’t manage the clutch much longer. I struggled on the stairs and my face turned blue on a regular basis. My neighbors stepped in and took over the yard work for me, and my knitting buddies began to drive me to all fiber related adventures as I wasn’t sure I should be trusted on the road. See, highs and lows. My illness is kicking my butt, and the people around me are stepping in to make sure I’m OK.

Early this month I met with my new internist to see if there wasn’t something that I could take to beat some of these symptoms back. OK, I’m going to be honest here. I cried. We agreed that I would start the tart cherry extract again, but at a much lower dose than I took previously in the spring. (Tart cherry has anti-inflammatory properties and is easier on my stomach than NSAIDs. Unfortunately, my kidneys were damaged the first time I tried to take it.) I’m going to have my kidney function checked every month, but I’m already so much better (brain fog, goodbye!) that I’m really hoping that I can tolerate it OK. In the meantime I’m getting lots of chores done in this golden period while I feel so much better. I’ve moved furniture, completed some projects, and have driven to many, many stores that were ignored last summer.

Wizard Hat
And I made a crocheted had for my niece to wear this Halloween. Really, I’ve been a bundle of energy the last couple of weeks.

So, this is the end of the third year. I feel pretty good, I’m getting things done and making plans, and I am making hay while the (tart cherry) sun shines. Next week I get my blood drawn for the kidney function test and after that I see the rheumatologist.

I’ve been thinking about butterflies again. The day after I took that picture of the butterfly it snowed. A lot.  It took a couple of days for it to melt as the temperatures climbed back up into the 60’s and 70’s. I wondered if the butterflies would make it. As I walked out of the office building after seeing my internist (and still recovering from my crying fit in her office…) I found butterflies swarming around one of the shrubs by the parking lot.

Those butterflies. You can kick them, but they come back. Be like a butterfly, I tell myself.

And the fourth year begins.

The Scleroderma Chronicles: Days of Wonder

The last time I chatted about my systemic sclerosis status I had just seen my doctors and I was doing great. I had sustained very little additional damage to my lungs and heart, I was taking a new supplement (tart cherry) that was an anti-inflammatory that my doctors thought I could tolerate, and I just flat out felt great. I could walk without pain, I had energy and I woke up most mornings feeling *normal* which was pretty darn amazing.

At the end of June I headed off to the clinic for my usual blood tests, joked with the man who draws my blood every 60 days, and bought myself a Starbucks on the way home to celebrate another successful outing. Two days later I was wondering why my blood results hadn’t been posted to the online portal. I was outside drinking my morning latte with the cats and the roses when the call came; my liver results were fine, but my kidney function had dropped dramatically. Oops. No more tart cherry for me!

Maine Coon cat with a bob tail.
Yellow Boy hanging out with my squash plants. Amazingly, he did not run away when the call came.

That’s when the days of wonder began. Wonder as in: “I wonder what will happen next?”, “I wonder what this is?”, “I wonder if I should call this into the doctor?” , and “Good grief, what now? I wonder when this will end?”

As soon as I went off of the tart cherry extract icky symptoms came back with a vengeance along with some new ones. It’s like they all made new friends while they were gone and couldn’t wait to show them off. Here’s what has been happening over the three weeks.

  • I woke up one morning with pitting edema in my arms and face. I looked like a chipmunk. I also had shooting nerve pain in one side of my face. Fabulous.
  • Two days later the edema was gone, but my knees hurt so bad they woke me up at 4am, and that was it for the night. Ugh! They also had swollen lumps on them!! In desperation I smeared medical marijuana cream (from a neighbor – this is Colorado and we have this stuff!) on them to see if that would help. The pain shut off within moments! I need to get me some of this stuff!!
  • The next day I slept through the night, but when I woke up in the morning the skin across my knees was so tight that I couldn’t bend them until I warmed things up with a heating pad. They itched and were warm to the touch. Maybe marijuana cream isn’t such a good idea after all. I’m losing patience, I tell the cats, who have piled onto my legs too since there is a heating pad in use… When will these cats learn how to make a morning latte?
  • Shooting pains start in my lower abdomen the day after my knees stop hurting. Diverticulitis, says the internet. Seriously! I wonder if I should call this in? I wonder if I should see that gastroenterologist after all…

Over the next several days I experienced scary low blood pressure episodes, chest pain, fevers, itching, more joint pain, and to top things off I started losing my balance and falling over without warning a few days ago.

Days of wonder, indeed. Nothing lasts; it appears that I’m on a roller-coaster of symptoms that will provide my summer thrills and scares until the ride ends (hopefully soon!). My repeat blood work showed that my kidney function had improved, and my rheumatologist isn’t saying scary things to me any more. My blood pressure is again stable, the chest pain and edema are gone, my balance is restored, and the pain in my face has vanished.

Cinco de Mayo rose.
This is one of the roses in my garden. It is called “Cinco de Mayo“, and I planted it in memory of my mother, who loved roses, who died on May 5th many years ago, and who remains the benchmark for all time for patience, grace and courage in the face of adversity.  Of course this rose has been blooming beautifully during these days of wonder.

This could be a really bad time, but I’ve discovered that it is best to just go with the flow and to focus on the ridiculous side of all of this; lumps on my knees, my chipmunk face, and falling over without warning. Really, don’t you just want to bust out laughing at the thought of all that? Thank heavens I didn’t develop a rash! It is also important to notice all the wonder around me. The beauty of my garden and the flowers, the days in bed reading new books, great dinners produced in the crock pot, the antics of the cats, and the joy of putting together a new knitting project. Wonder is endless, easy to find, and costs nothing. Okay, let’s be honest. Binge watching shows on Netflix helps too.

Today I feel a little dizzy, but much better. Hopefully I’m coming to the end of the tart cherry withdrawal. That’s right. Best to stay positive and cheerful.

I wonder what will happen tomorrow?

Ready for the Magic!

I really don’t like to do this, but the first step in recovery is to admit that you have a problem. That assumes, of course, that you are interested in actually recovering from your addiction…

I keep buying these gray-toned yarns with flecks of pink and purple in them… I think that I have actually bought five different 2-skein sets of this type of yarn with the idea of making another “Waiting for Rain” shawl.  Maybe, I told myself, it can become ANOTHER Find Your Fade. I’m in my 60’s now, and my hair is starting to go gray…  I’m wearing more black and this yarn will go with my entire wardrobe. Do I need any more excuses? No, not really. This yarn had me at “hello!”

Nope. Not recovering today. There is no problem here. I love yarn, I love to knit, it makes me happy, and there are few things that make you decide to do what makes you feel happy like getting diagnosed with a possibly-fatal autoimmune condition. Oh. For one thing, you notice that the condition of life itself is eventually fatal… whatever have I been waiting for?  Buy yarn. Time to knit!

Still there is the issue of what to do with all of this awesome yarn?


This is the Marled Magic Sweater by Stephen West (photo credit: westknits). Hey, wouldn’t this be the perfect solution to consume that yarn and make something that will carry me through the cold of winter wrapped in absolute cushy yumminess?  Yes, yes it will!! I downloaded the pattern that week and read the directions. Oops. This is going to be challenging and it is going to take a lot of yarn. Stephen suggests that you stock up/locate about 1500 grams of the stuff to make your yarn palette. Good think I have a stash that reflects my true yarn-addiction status.

Pile of yarN.
I pulled out every yarn that I thought I could use and piled it all in a couple of large bins. After that I sorted the yarn into color grouping and sadly make some cuts. Then I made some more cuts. This is what I was left with…
Lace weight yarns.
The marl in the fabric is created by knitting with two strands of yarn held together. I pulled out lace weight yarns in the colorways that I was looking for. This is mostly mohair, silk, and alpaca yarn. I have a lot of the steel gray mohair at the lower right hand corner, and will use the other colors to spice things up.
Yarn collage.
Then I pulled out these fingering weight yarns to accent the gray mix yarns that I started out with: blues, purples and rose/pinks. I have some golds and teals that I put back into the stash, but they may sneak back into the working yarn palette later. I put in the gray Brooklyn Tweed Loft too as Stephen suggested that it be included if possible to help cut the weight and to prevent stretching.

Pretty intimidating, but I am getting ready to so some serious yarn winding and should get the project page on Ravelry started soon. Wow. This is a lot of yarn to enter, and then there will be the notes…

Good thing I am a true addict!!

PS: my rheumatologist told me that I should knit as much as I can to help keep functionality in my hands. Never did medical advice fall on such fertile soil… not that I needed another excuse. 🙂

The Scleroderma Chronicles: Year 2.5

Wow. How quickly time flies. It has now been two and a half years since I was diagnosed with the autoimmune disease limited systemic sclerosis (AKA scleroderma), and I joined the rare disease club. When last I reported on my progress I was at the end of a tough year; lung disease, oxygen, a referral to palliative care, gastroparesis, and constant pain. I was having trouble walking and my stomach was really acting up; I was losing weight at the rate of a pound a week. Ugh. I was somewhat upbeat by the end of the second year since I was off oxygen, but still, things weren’t really all that great.

Mitts and bracelet
Look at the cute mitts I made in teal, the color of scleroderma. I got that bracelet last fall at a scleroderma patient education conference that loaded me up with lots of great information.

What a difference six months can make. A change in medication made my Raynaud’s much easier to handle. I started doing yoga (carefully) a few months ago and added tart cherry extract as an anti-inflammatory that I can tolerate better than traditional NSAIDs. I bought shoes that felt better on my feet (Haflinger clogs) and got serious with stretching exercises for the plantar fasciitis I developed due to tightening on the bottoms of my feet. I switched to a gastroparesis diet that is mostly easy-to-digest, low fiber foods (got to love pasta and yogurt to do this one…) and began to add some blended  fruits and veggies. My weight loss stopped and I started to gain back some weight. My skin has started to loosen up on my right arm (scleroderma literally means “hard skin” as the most obvious symptom is thick, hard skin that develops as the result of systemic scarring), which is pretty darn exciting!  Over the last six months my energy has been slowly coming up and I have been managing with less pain; I can even walk normally! I’m breathing better and I rarely need to use the rescue inhaler. There was a Sjogren’s flare, but still, things are better.

I just finished making the latest round of testing and doctor visits, and I have to say, it is pretty exciting to visit with happy smiling doctors. My pulmonologist was almost giddy! My lungs and heart have maintained (scleroderma damage tends to be forever…) with almost no new damage; I am right at the edge of trouble, but I’m not there yet. I have good blood work, and even had the first NORMAL kidney function test in over 5 years. My red blood cell count is back down in normal range, and my muscle strength has improved so much I can now easily push shopping carts.  It seems that the increased dosage of immunosuppressants has turned the tide and I am stable. STABLE!! What a wonderful word that is.

I will continue with all of my current drugs for now and there will be more testing in a year, but it is clear that I have definitely pulled up from the nose dive that they through I was in a year ago.

Life is good.

Back to knitting!!


April Updates: Sjogren’s Syndrome and ANOTHER Fade

Hi. If you’ve been following my blog for very long you already know that I am an out-of-control knitter owned by a self-absorbed and bossy cat named MacKenzie. You have probably detected that I am a science-oriented geek, an obsessive reader, and a casual gardener who loves her roses. You may have also realized that I have some serious and chronic health problems that I am trying to keep from taking over my life. I’ve been pretty up-front about the more serious of my autoimmune duo, systemic sclerosis (scleroderma), but I hardly ever mention the lesser of the two, Sjogren’s Syndrome. After all, since the diagnosis came in, all of my doctors (I have a six-pack of docs…) tend to focus on the scleroderma, so I almost forget that I also have Sjogren’s.

Except for this: of the two autoimmune conditions, it is the Sjogren’s that has pretty much taken over my life in spite of my efforts to keep control. Since April is Sjogren’s Awareness Month, I decided that I would share with all of you some information about this disease and how it has impacted me.

But first, the Fade!! I’m cranking out another Find Your Fade shawl that I hope to get done before the end of the month. Look at these colors! Look at how great this shawl is going to be! Color me happy! My Ravelry project notes are here.

I’ve just started the 4th color and I can’t stop knitting because of the happy turquoise color. Must keep knitting. The 5th color will be even more wild!
Yarns for a shawl
See what I’m talking about? The color sequence for the shawl moves from right to left in the picture, and the next color will be that Hedgehog Fibres yarn. Then there will be that electric violet. Woohoo!

The weather has been nice this week so the cats have moved outside to bug hunt and I have moved into major knitting and house cleaning mode. OK, there has been more knitting. It’s important to have priorities…

Back to the Sjogren’s Syndrome. I know that you are just dying to know more about this little know and hard to spell disease. Sjogren’s isn’t as rare a disease as my bad-boy scleroderma (about 4 million Americans have it), and it isn’t usually life-threatening, but it is still serious and exceptionally life altering. Check out this symptom chart. This is one crazy-ass autoimmune disease; basically my immune system is attacking all of my moisture producing cells. That doesn’t sound all that bad, does it? As it turns out, the impact of this damage affects an awful lot of my body’s ability to function properly, and for this reason Sjogren’s is considered to be a systemic condition. Its most obvious feature is extreme dryness. Let’s take a little walk around my house as I explain this to you.

Even I was shocked to realize how many types of lotion I have on my bedside table. There are 11 types of lotion here, and another couple of lotion bars in the drawer. I also have lubricant eye drops that I put in at least twice a day. I absolutely have to stay up on the eye drops every day or I develop cloudy vision. See, dryness. Dry skin, dry eyes. 
Dry mouth too. I never knew this before, but your saliva is necessary to fight bacteria in the mouth; without it things get out of control quickly.  I was producing no saliva when first diagnosed and I did have lots of dental issues. Things are better now, but I have to be very careful to keep my teeth as clean as possible, and I use the rinse nightly to help protect my teeth.
The struggle to protect my eyes and skin continues every time I leave the house. I need lip balm and sunscreen before I go out, and sunglasses are a must since my eyes are really sensitive to sunlight. Because my mouth is so dry I don’t move anywhere without some type of fluid to drink. It’s such an issue for me I usually keep a case of ice tea in the car so I won’t ever run out. See the cute fingerless mitts? Sjogren’s causes Raynaud’s  (which I have) so I need to keep my hands and fingers warm at all times. If you think I’m crazy about managing fluids you should see how many pairs of fingerless mitts and gloves are riding around with me in the car with that case of ice tea…
Steamer with hot pack
Combating dryness makes sense, but there are lots of other annoying symptoms that I’m dealing with too. My joints and muscles hurt all of the time. I start every morning with chemical hot packs on my knees and leg muscles. I recharge them in this steamer each evening so that I’ll be ready to use them as soon as I wake up. This is my routine: make a morning latte, and then go back to bed with the hot packs and coffee.  Usually there is a cat added. Cats love hot packs!
My Sjogren’s antibodies also cause small airway disease (asthma). I notice blue lips quite often these days, and I have to monitor my blood oxygen levels and use the inhaler if my levels get too low; I’m trying hard to stay off oxygen. Darn. Just another couple of items I need to fit into my knitting bag.
and then there are my gastrointestinal issues. I developed gastroparesis this fall and now I am rocking a low fiber diet of easily digested foods. Check out my lunch. 

Now for the things that I couldn’t take picture of: fatigue, neuropathy, and concentration/memory problems. The fatigue that comes with Sjogren’s is not the usual “feeling tired” stuff. This is true crushing fatigue that makes me feel buzzy, numb and like I’m walking through concrete. The neuropathy means that I have feet/hands that are always falling asleep; more trouble walking. Then there is the memory stuff. When I’m in a flare all kind of crazy things can happen. I got lost on the freeway once; now I always use the GPS to give me driving directions. I have gone out to run an errand and then couldn’t remember where I was going. I have big problems with vocabulary recall, and I forget things like my phone number at the most embarrassing moments. I lose my ability to read because I can’t concentrate…

Good grief, I pretty much have my life arranged around my Sjogren’s needs. I thought that MacKenzie was running the show around here, but it looks like he needs to take a back seat to Sjogren’s.

MacKenzie: Not happening. I am the man!!

Which brings me to the good things for which I am grateful. Most people with scleroderma/Sjogren’s struggle with anxiety and/or depression. I do not. I think that I am so very lucky in my wonderful, supportive friends and my son. I am lucky to have good neighbors, health insurance, and a pension that meets all my needs. I am lucky to have cats that pile on and purr through all the sad times. I am lucky to have the immensely meditative and calming art of knitting to carry me through each and every flare of my disease.

Knit on, my friends. Knit on.