scleroderma – Page 9 – Yarn, Books & Roses

Scleroderma Awareness Month: Hard Word. Harder Disease.

Every year I get a note from the Scleroderma Foundation about Scleroderma Awareness Month. Take the pledge! Tell at least one person about scleroderma! Coerce your friends into joining the walk for the cure later this month.

Piece of cake. I can do that. Hand on to your phones, because here we go.

Scleroderma is a crazy sounding word, isn’t it. It is actually descriptive of the most obvious symptom of the disease: based on Greek words, “sclero” means hard and “derma” means skin. Hard skin. My skin is interesting to say the least. Hard, shiny, speckled with white patches of scaring, tight across my cheekbones and knuckles: kind of typical for the disease.

“It’s just your skin”, I was told by my ex not long after my diagnosis. “It’s not a big deal, right?”

As it turns out, this actually is a big deal. The tissue under attack by the immune system is the connective layer just under the skin. You know, the layer of the skin that produces the collagen that gives skin its stretchiness and cohesiveness. Imagine what would happen if this tissue grew really thick, stiff, and then tightened down so badly that blood circulation was cut off and it became impossible to move correctly at the joints. The skin around your mouth can be too tight for you to open wide at the dentist, you can’t bend over to tie your shoes, and forget turning your neck. If your skin won’t stretch, you are in a fix for sure! Finger tip ulcers are a constant worry, and physical therapy to maintain flexibility becomes part of the daily routine. Or you can knit. Knitting is good for blood circulation and flexibility. 🙂

Best advice ever for the scleroderma girl.

This same connective tissue is also found throughout the intestinal tract, and in many other organs of the body. The lining of blood vessels also is impacted, and there is a lot of smooth muscle (like the muscles that work in your stomach) damage. Some people with scleroderma will only experience it in their skin, but others will have damage occurring in organ systems of their body. None of this is nice; some people will lose the function of their hands, while others suffer kidney, heart, and lung damage. Intestinal tract damage is almost universal, and some of these complications can be severe. Check out this neat interactive chart of symptoms.

So, what causes scleroderma? The actual answer is… nobody knows. It is an autoimmune disease that is triggered by unknown causes, has no cure, and if left untreated in the systemic form is fatal 50% of the time. Right now there is no drug to directly treat the disease, but there are treatments to help with symptoms and to modify the course of the disease by impairing the immune system. With these drugs survival rates are way up. Seriously, hug the next scientist you come across. I personally plan to throw a bar-b-que for the next one I get my hands on.

As it turns out, this year the month of June arrives at a pivotal time in my scleroderma life. There is so much going on, and so much that I’m thinking about, that I’m gearing up to post a whole series of articles about the complexities of navigating through the world as a chronically ill patient. Seriously. I could write a blog post for each day of the month. My little notebook that I jot ideas for posts in is filling up quickly.

I need a catchy title for the series. It will be about science, biology, medical decisions, and navigating through a world of alternative medicine and treatments. You know, like fake news, but instead we are dealing with fake medicine.

Whatever is a scleroderma girl to do?

Stay tuned. I’m seriously gearing up for this. June is going to be a great month.

Hey, if you want to walk with me for a scleroderma cure, just let me know. 🙂

The Scleroderma Chronicles: Year 3.6 There is a 911 call…

Yep. It finally happened.

Upset cat — These scary firemen came to the house and took mom away.

It has been kind of a hard six months. I’ve been dealing with a serious flare of my Sjogren’s Syndrome: dry mouth, eye problems (retinal detachments in BOTH eyes), brain fog, and horrible fatigue. Seriously, off the chart fatigue. Bad Sjogren’s, bad!!

But I think that my systemic sclerosis (scleroderma) has been chugging along as well. My chest feels tight, and when I do anything at all I start to breath hard as I catch my breath. Okay, there might be some panting… Sometimes I get dizzy and I have to put my head down. Vacuuming is suddenly a horrific task, but just coming up the stairs or washing out a pan at the sink can also set me off. Sometimes my lips are blue…

Arm with edema. — Check out my edema: Can you see the details of the quilt that my arm was resting on?

One of the problems with being chronically ill is that you just keep taking things in stride. After all, it isn’t like this is the first time I’ve seen edema like this, or noticed that my lips were blue. I get out of breath all of the time, and I’ve been telling my doctors about all of this for the last 18 months. But somehow, things seem a little worse now. I have heart palpitations and there is a constant pressure in the middle of my chest. I have developed a headache that just refuses to go away, and my muscles and joints are behaving even worse than ever.

So, Friday while I was resting up in bed after the ordeal of making my morning coffee (yep. I go back to bed to recover from getting out of bed…) I decided that I would call the pulmonologist’s office to ask for an appointment. As usual, thinking that I would be on my feet for only a limited amount of time, I planned several little chores to do while I was going to be up.

Aren’t those the cutest armwarmers? I put them on, and then started the dishwasher, got a load of laundry going, and then pulled on some more warm clothes (ahem… my Cactus Flower socks and Marfa is a Black Elephant shawl over some fleece pants and a denim shirt) so I could sit at the computer downstairs to make the phone calls.

So, I was out of breath when I made the call. I got ahold of the nurse at my pulmonologist’s office to ask her if I should came in for testing right away or if it would be best to make an appointment. As I talked to her my breathing got worse… I just couldn’t catch my breath and I was now outright panting. I began to feel faint.

The nurse called 911.

I ended up sitting on the floor by the front door with the phone on speaker in front of me waiting for the paramedics to arrive. In just a few minutes they had bundled me up and were whisking me out the door leaving a visibly upset MacKenzie watching from the top of the stairs. It was snowing outside; I didn’t have a coat, but I had managed to hang onto all of my knitted items. The paramedics attached me to all of their sensors and then rebundled me in blankets and knitted items afterwards (okay, my hands turned blue. They hadn’t ever heard of Raynaud’s, but they becaume instant fans of wooly warmth when presented with fingers that matched my denim shirt…) My armwarmers were popped back on over the IV line and the oxygen sensor on my finger. They used the shawl as an additional blanket. I never got my breathing back under control, and was still panting up a storm when I got to the hospital, but I was better equipped than most to cope with the cold. I like to think that I was pretty darn fashionable, too.

Into the MRI machine I went, rocking my armwarmers, as once again the doctors went on a blood clot hunt. Every one of my health emergencies has involved blood clot hunts; it’s a scleroderma thing. No blood clot. No pneumonia. No heart attack. After 2 hours sitting on the gurney in the ER my breathing was under control again and my O2 was fine. My best friend Deb arrived with knitting in hand to sit with me. My son arrived in time to take me home again with instructions to not let me drive or stay home alone.

“This is something that needs to be treated by a specialist”, the ER doc tells me. “You need to call your pulmonologist’s office first thing in the morning to get in to see her. You need additional tests that can’t be done here in the ER”.

You think?

It’s hard to not be stuck by the irony of this. I’m back right to where I started. It is kind of known in the scleroderma community that going to the ER is mostly useless because they don’t have the knowledge and experience to treat your condition. I’ll be calling my pulmonologist first thing Monday morning, but this time I will be calling from bed in a well rested condition.

Grooming cats. — with my latte and the cats!

For those of you who don’t know all of the details of my autoimmune bad-boys, here’s what is going on:

I have the limited form of systemic sclerosis, which is a subset condition of scleroderma. I have thick skin on my lower arms, legs, face and neck mostly, but the damage is also affecting several of my organ systems. I am considered a classic case with all of the CREST components.
I also have Sjogren’s Syndrome, which is fairly common as about 15% of systemic sclerosis patients also acquire this sidekick condition along with the scleroderma. It’s serious in its own right, but not usually life threatening.
Systemic sclerosis has a whole basketful of complications: Raynaud’s Disease, interstitial lung disease, pulmonary arterial hypertension, and kidney disease along with the almost universal digestive tract complications. I have all of these, but in my case the words that are used to describe how I’m doing are “mild, early, and moderate”, which are nice descriptors to have if they are being used in the context of lung, heart, and kidney disease. I’m kind of guessing that one of the heart/lung conditions has taken it up a notch.

Today I’m camped out with my son waiting for Monday to arrive. I’m knitting.

Do you know the great Elizabeth Zimmerman? Her famous quote, one that I bear close to my heart on days like this, is: “Knit on, with confidence and hope, through all crisis.”

Knit on, my friends, knit on!

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.

Finger — 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!

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.

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.

Butterfly — 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:

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.
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.
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…

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?

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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.

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.

Lotions — 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.

Bathroom — 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.

Sunglasses — 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!

Inhaler — 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.

Blender — 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.

Cat — 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.

The Scleroderma Chronicles: My Second Year Report

Well, here I am at the end of my second year since my diagnosis of systemic sclerosis, a life-threatening form of the autoimmune disease scleroderma. Last year I blogged about my illness: I had come through the worst of the grief and horror at the initial diagnosis, had made my way through some scary incidents that sent me flying across town to emergency centers, and was pretty upbeat about where I was in the progress of the disease. I was sick, but I hadn’t developed any of the most serious, life threatening complications. My heart and lungs were fine. I had just been started on some serious immunosuppressant drugs (the same ones that are given to kidney transplant patients), and while they are risky, I had been told that they could really make a difference in my 10 year survival rate.

Hey, you roll the dice and you take your chances. No sense worrying about the unknown future. I drugged up and slept like a baby at night.

Star Trek Meme — The Kobayashi Maru test, as all Star Trek buffs know, was a no-win scenario; it was meant as a test of character. Systemic sclerosis, an incurable, progressive, disabling and potentially fatal disease, can also be considered such a test.

Ready to hear about my second year? Let me give you a hint: buckle your seat belt, because we are in for a bumpy ride.

November-December: the drugs begin to kick in and as they beat my immune system into submission my skin starts to harden up. I hurt everywhere!! I can hardly bear to comb my hair. The place where my flu shot went in hurt for weeks afterwards.
January: I caught the flu. Talk about insult to injury! Here’s the short version: antibiotics, off the immunosuppressant drugs so my body’s immune system can fight back, and then trouble breathing, chest pain, heart palpitations, and a partridge in a pear tree. What a mess! The month passes in a blur.
February: I’m still pretty sick and struggling to breathe. I get bounced back and forth between doctors as the debate about the root cause of my symptoms rages. I begin to pressure my doctors for answers and there is much testing. Oops. All is not well with my lungs and my heart is accruing damage. I get sent to a pulmonologist and she give me an inhaler to help me breath. She also tells me I am in serious trouble and refers me to palliative care. The doctors increase my immunosuppressant drug dosage.
March: Why, hello, Sjogren’s Syndrome. We forgot all about you! In the concern about my systemic sclerosis, the bad boy of my autoimmune twosome, everyone forgot that I also have Sjogren’s Syndrome, another serious autoimmune disease that causes dry eyes and mouth. As it turns out, it can also cause small airway disease (think never-ending asthma attack) and it has pushed me into chronic respiratory failure. Hello oxygen machine. You are my new best friend.
My new best friend!
April: new lung scans are back, and while I am diagnosed with interstitial lung disease, it appears that it is only mild. Huge sigh of relief!! There is also consensus that my pulmonary hypertension has not advanced. Both of these diagnosis, while still early and mild, are very serious, and the decision is made for palliative care to continue to follow me. Bummer!
May-July: Sunshine! Heat! Burning muscles, aching joints, gastritis, dizzy, dizzy, dizzy, and I notice that my lips are blue. I’m on oxygen 24/7 by the end of July.
August: my internist changes my meds to bring my heart rate up, and suddenly I have enough oxygen. The heart palpitations stop and after more testing I come off the oxygen. The 6 month Sjogren’s-driven asthma attack is finally over.
Summer quilt and socks for my poor hurting feet.

September-October: why does it hurt to walk? What is up with my feet? And this whole barfing in the middle of the night is getting downright annoying… My internist tests me to see if I have an H. pylori infection.
November: Well, doesn’t this beat all. The H. pylori test came back negative and I am diagnosed with gastroparesis. The muscles of my stomach are too damaged by systemic sclerosis to work correctly; the damage is irreversible. I start eating a very limited diet of soft foods and dairy. Ironically, I can now eat jelly donuts, but not fresh baby carrots. I’m losing weight anyway.

Little Greenhouse — The gastroparesis diagnosis hit me hard even though I kind of knew it was coming. I stopped to get a little cheer-me-up on the way home. Check out the little greenhouse I put together for the kitchen window. As always, MacKenzie had to help out with the picture.

Flowers — Here’s the flowers. Aren’t these cute? They were sold at the local nursery to put into “Fairy Gardens”

and how could I resist adding the little cat and the mushroom? Those plants are miniature Kalanchoe that should eventually bloom again.

See, a bumpy ride that is still going, but a year that was also rich in gifts. Palliative care forced me to face the future with more courage and to make end-of-life decisions for my family and to start cleaning out my house of junk. I talked to family about my medical power of attorney. I enlisted one of my doctors to manage the medical team and I began to feel more in control of my basically out of control disease. I began to knit gifts for those I love with a purpose: everything now is a piece of me. In my mind the shawls that I am making for everyone I know are the “Good-bye Shawls”. I am on fire to make as many fingerless mitts for other scleroderma patients as I can. At the end of the day, this year was not one of struggle and heartbreak as I dealt with the endless march of a disease that has no pity or remorse. Rather, it was one of care, giving, creative fire, good friends, and the meditative peace of knitting.

Okay, I do get cranky at times, and there has been some crying. I get short with annoying salespeople because it is so hard for me to shop. I told my ex-husband I was tired of hearing about his “stupid-ass” motorcycle. I yelled at the cats. I hate when people say, “Well, you look great!” in a way that suggests that I’m not really all that sick at all. I wish that they were there to hold my hair when I hobble to the bathroom at 2am to throw up that nice meal that I hopefully ate but couldn’t digest. There. I got it off my chest, and I feel much better. Aren’t you relieved to hear that I can be petty and mean from time to time?

Tomorrow is Thanksgiving Day. You know, it is easy to focus on the day: travel, turkey, family and the descent into wild Christmas shopping. Sometimes we forget the history of this national holiday; thanks for a good harvest and the blessing of probable survival through the coming winter. It is also a time to reflect on the bounty of the last year and to be grateful for the gifts it brought.

In spite of all the bumps of the last year, I am grateful for all of the gifts I have received.

Happy Thanksgiving everyone!!