The Saturday Update: Week 1

Have you ever gotten to the end of a week and wondered what you had accomplished? Yep. Me, too. As a New Year’s resolution I’m going to try to do a weekly update every Saturday about all the little things that were going on that week. You know, all the stuff that has to do with yarn, books and my garden. Here’s the first update.

Knitting

I just made the best socks in the world! I’m not kidding, these babies are just great! I’m talking about the Snowshoe Socks by Emily Foden that I knit this week. What is nice about them, you ask? I’m so glad you wanted to know: they are heavier socks that are knit by holding two fingering strands together. One strand needs to have nylon in it, but the other can be a softer yarn like 100% superwash merino or maybe something with cashmere. I have a lot of yarns that I bought to feed the stash thinking that they would be great shawls or whatever someday. Right. Those yarns are still lurking in the stash laughing at me. I can now use them to make socks when combined with a tough sock yarn. Together the two fingering yarns make a marled DK yarn that blends through the sock as you swap in different fingering yarns. This can be a stash buster or you can just use 2 yarns that you love marled together. The pattern is simple and pretty easy to adapt if you need to. My project notes for this sock are here.

The navy and gold are yarns that I had left over from previous sweater projects. I hate yarn chicken, so I always have an extra skein of yarn. The light blue mix is yarn that I bought to feed the stash. A year later I’m still wondering what to use it with. Since it went with the other two yarns I decided to use it as the main yarn with the other two jumping in and out.

The gold yarn has some cashmere and both the navy and the gold contain nylon. The light blue multi is 100% superwash merino and could never survive as a sock on its own. This strategy allows it to become a sock by hanging out with the other two yarns. It’s kind of mysterious, but the resulting fabric is much better than a sock just knit from DK yarn. I think that the twisting of the two sock yarns plus the added nylon makes the difference as you knit.

Look at the cool fabric that is being produced by these three yarns in combo.
Here they are all finished up: hearty socks that are amazingly warm, soft and kind to my feet right when I need a little help to get through the winter.
In spite of gloves with mittens over them I lost circulation in my hands and feet while trying to get into the grocery store… this is Raynaud’s.

What’s up with my feet? Ugh. Where to start. I haven’t made too big a deal about it, but I’ve been struggling to walk for a year now and finally have transitioned from limping, to using crutches, to mastering a snazzy purple cane. The opposite foot to the bad hip has developed a slew of problems of its own and now needs to be babied also. My toes hurt and need to be cushioned. The fat  that people usually have on the bottoms of their feet is now gone on mine (thanks, scleroderma) and I’m walking on the bones of the outer side of my foot and they are not happy campers at all. I’m developing benign tumors in the big tendon on the bottom of my foot (the plantar fascia), and to top it all off I struggle with loss of circulation in my toes because of the cold. Not to worry, people, I am a knitter and these socks are going to be big helps for me in the weeks and months of cold weather to come. Bring it, winter, I am ready for you!! Note to self: knit more of these socks!!

Garden
The first orchid plant has started blooming! This is a plant that puts out lots of smaller blooms. Four more orchid plants have growing stems and those flowers will be larger. I can’t wait to see what the color of the blooms will be: you’d think I’d keep notes, but no, this is going to be an adventure. I’m pretty sure I’m in for purples and rosy gold blooms.

All of the orchids are thriving under the indoor growth lights that I bought for them last winter and I gave them more fertilizer and a spritz of Neem oil this week. I felt sorry for a couple of little roses that were still in the garage and brought them into the indoor garden. To thank me for taking pity on them they gifted me with white fly: those brats!! Everyone got sprayed with Neem and we’ll see if that does the trick.

Books
This is why my socks were completed in three days flat!!

I’m trying to listen to audiobooks more while knitting, and I started this one early in the week while knitting in bed with MacKenzie. Good lord! Don’t start this book if you don’t have time to put your life on hold while obsessively reading (or listening) it from cover to cover. It’s compelling. It’s horrifying. It’s best described as a psychological thriller that involves a cult-like psychopath, abused and abandoned children, a murder mystery, lies, poisons, inheritances, families lost and found, or a take home lesson to not let strangers come live with you. Okay, this is flat out unbelievable and more than a little disturbing, and the characters aren’t all that likable, but you can’t help feeling like, maybe, this could actually happen… I read this book for my book club and I can’t wait to go talk to some other people about it.

I’ve been thinking of Australia this week. If you are there, please stay safe. I feel awful complaining about cold while you are suffering through extreme heat and fire behavior. Hugs to all of you.

Free Pattern: Sweet & Simple Vanilla Mitts

I’ve been working away on developing the pattern for the simple mitts that I mass produce and give away to share with all of you. I thought that I would get it done and posted in time for Thanksgiving, but here I am a day late. Anyway, here they are, my gift to all of you just in time to create some yummy little mitts for yourself or as a gift. I’ve made a PDF of the Mitts and also put the instructions into this post. This is the first PDF I’ve created and uploaded, and it isn’t tech edited, so don’t judge! 🙂

Sweet Simple Vanilla Mitts_Final

Happy knitting.

These simple mitts can be used to showcase a special yarn, are extra comfy due to their deep thumb gusset, and can be used as a stash buster as they only need 160 yards of fingering yarn. Oh, yeah. They will also help keep your hands warm this winter!

Sweet & Simple Vanilla Mitts

Materials:

  • Yarn: 160 yards fingering yarn. The pictured sample was knit using 80/20 superwash merino/cashmere yarn.
  • Needles: Two 16” cable needles, size 1 (2.25 mm), additional size 1 (2.25 mm) double points, or size needed for gauge. The pattern can be easily adapted to use only double-pointed needles or a large cable needle and the magic loop method.
  • Notions: 2 stitch markers, yarn needle, scrap yarn

Gauge: 32 stitches and 12 rows = 4 inches in stockinette stitch

Finished Measurements: The mitts have a 7.5 inches circumference and are 6.25 inches long. The size of this mitt is easily adjusted by adding stitches or rows.

Mitt Instructions

Ribbed Cuff 

    • 1.Cast on 56 stitches using your preferred method; I’m a fan of Old Norwegian CO as it creates a nice, slightly stretchy edge. Place 28 stitches onto each of two 16” cable needles. Join to knit in the round carefully, making sure to not twist the stitches. Mark the beginning of the round (BOR).
    • 2.Work K1,P1 ribbing for 8 rounds.

Wrist: K 12 rounds. If you are using the two 16” cable needles you can easily try the mitt on to see if the wrist is the desired length to the base of your thumb; if not, you can add or decrease rounds until you have the length you want. (56 stitches)

Thumb Gusset:

    • 1.Set up round: K2, PM, M1R, K1, M1L, PM, K to BOR.
    • 2.K 2 rounds
    • 3.K2, SM, M1R, K to marker, M1L, SM, K to BOR.
    • 4.K 2 rounds. Repeat steps 3 & 4 until there are 21 stitches between the markers (76 stitches)
    • 5.Next round: K2, remove marker and place the 21 thumb stitches onto scrap yarn, remove 2nd marker, CO one stitch using the backward loop method, K to BOR. (56 stitches)

Palm: Continue knitting rounds until you have completed 12 rounds. Try on the mitt again and add or decrease rounds if desired, keeping in mind that the final ribbing will add ¾” to the total length.

Ribbed Knuckle-Hugging Top: Switch to K1, P1 ribbing and complete 5 rounds. BO somewhat loosely in pattern being careful to not BO too tightly for a comfortable fit. (Note: for a balanced mitt with more coverage you can add 2 more ribbing rounds = 8 rounds total.)

Finish the Thumb: Using the 2.25 double point needles, pick up the 21 thumb stitches from the scrap yarn and place them back onto the needles. Attach yarn, pick up three stitches across the base of the thumb, and complete 5 rounds of K1, P1 ribbing. (24 stitches) BO somewhat loosely in pattern.

Note: the construction of the right and left mitt are identical; make two mitts following these directions. Weave in all ends and fix any gaps at the thumbs. Enjoy!

I gifted these mitts to a friend this summer. She let me know that they sure came in handy this summer while jogging up at Steamboat Springs in our Colorado Rockies.

I knit and gift these mitts to family, friends, other scleroderma patients, and Raynaud’s sufferers that I meet. Feel free to copy and/or share this mitt pattern with reckless abandon. If you would like to knit and sell the mitts, much joy to you, but please give me credit for the pattern.

Have a great weekend everyone!!

The Scleroderma Chronicles: Getting My Mojo Back!

This post is going to be something of a mess as I’m having trouble distilling all of the issues I’m having with my disease(s) into specific themes. I’ve been pondering and trying to make sense of everything for the last couple of days (while knitting, of course!) and here are the main threads of thought.

    • When you are chronically ill it is hard to be assertive with medical professionals upon whom you depend.
    • In a life with constant symptoms and annoyances, when is it time to insist that something must be done to help you?
    • How should I respond when medical professionals insist that test results prove that the symptoms I’m experiencing aren’t really happening?
But before I start whining about all my woes I would like to offer up this picture of the bee party going on in my garden. I definitely need to plant more of these plants!!

I’d like to set the stage for the little adventure I’ve been on for the last 6 months. Actually, I need to go back farther in my odyssey for this to make any sense. It has been 5 years since I was first diagnosed with systemic sclerosis (scleroderma), Sjogren’s Disease, and fibromyalgia. For the last 3 years I’ve been experiencing painful and burning muscles, joint pain, and swollen bursa. I am just miserable and struggle to walk on some days, and I’ve noticed that I have many other symptoms on these bad days: fatigue, brain fog, edema, eczema, GI woes, hair loss, and shortness of breath. I keep checking to see if I’m running a fever, and I feel so sore and sick it feels like I must be coming down with influenza. I call these surges of symptoms “flares”.

If I break down and take an NSAID (ibuprofen) , a drug I’m forbidden to use as it might damage my kidneys, I can buy myself 2 good days as my flare symptoms fade into the background. Other supplements and medications that I’ve taken also make my symptoms subside, and when I checked they all had anti-inflammatory properties (doxycycline and tart cherry extract, I’m talking to you!). Hmmm… it’s almost like I’m struggling with inflammation, huh.

Because of my observations I’ve been suspecting that I’m in the grips of some type of systemic inflammatory event, and for three years I’ve been consistently reporting to my rheumatologist and others that I’m struggling and that I need help. Mostly I’m told that I have a chronic illness and that there is nothing that can be given to me that will not cause damage to my stomach or kidneys. I’ve cried. I’ve been bounced between doctors. I finally got a referral to physical therapy but I continued to struggle. Mostly I just maintained and accepted my fate, trying to make the best of things. My world closed in as I retreated to my “safe house” to manage my symptoms.

Time for another trip to my garden, don’t you think? One of my mini-roses, attacked by spider mites and reduced to a couple of twigs, has recovered and started blooming this week. It just goes to show, it is not unreasonable to wish for improvement!

In February I tried to raise the pain issue with my rheumatologist again, and she just snapped at me that I was on the best medications available, I didn’t have inflammation because my C-reactive protein was normal, and that I was always complaining, and that maybe she should prescribe me some anti-depressants! Simultaneously outraged and heartbroken, I refused. I got out of there and cried in the car. I clearly needed a new doctor, but I didn’t know of a better one, and I needed more than my own observations to press my case.

Here’s the deal: I used to do medical research on, ironically, scleroderma. I’ve sat through lots and lots of presentations by physicians struggling to treat patients with rheumatic conditions. I know to be skeptical of cookie-cutter treatment plans, and to always follow the data wherever it takes you, even if it seems to be unreasonable at first. I know to remember that even if 90% of patients respond to specific medications and treatment plans, there are still the others who need something different.

Struggling to walk, in pain, and short of sleep, I made appointments with other doctors in my care team. I also began to collect data to support my inflammation hypothesis. I also began to hunt for another rheumatologist.

    • My physical therapist told me my joints were too swollen for me to go to the gym. Or to do yoga. Maybe I could do a stationary bike… carefully.
    • The dermatologist, shocked by my swollen face, immediately prescribed an anti-inflammatory ointment and doxycycline, an antibiotic with anti-inflammatory properties. Wow! Big improvement. Better than ibuprofen!
    • My internist stepped in and prescribed inhaled steroids and another anti-inflammatory gel to put on my hip. Wow, wow, wow!!! Huge improvement. I can breathe again!! Brain fog went out the door, energy came up, and I had less joint and muscle pain. My hair started to grow back in and my stomach pain stopped. This was just darn thrilling, people!
    • This week an orthopedic hip specialist that my internist referred me to told me that I have IT band syndrome and bursitis.  I now need to double down on the anti-inflammatory gel, there is more physical therapy in my future, and injections of steroids into that hip bursa will happen if my immune system, already suppressed, can handle it. Because I’m on high risk medications to crush my immune system into submission these things have to go slowly, but the process is now in motion.

I don’t know about you, but it sure seems crystal clear that I’m dealing with inflammation, right? Imagine my shock (NOT) to read a research study last night that showed that C-reactive protein, the inflammatory marker that my rheumatologist uses to assess my disease, does not become elevated in scleroderma’s fibrotic process. You know, the process that made my IT band become so thickened and inflamed that it is clearly visible on my x-rays and responsible for causing my bursitis. “We can’t be sure that scleroderma caused this,” said the orthopedic specialist. “Well, I’m pretty sure I didn’t get this from knitting,” I snarkily replied. We also discussed if I might have bursitis on the inside of my hip joint. “Well, that would be unusual,” he said. “Please, you’re talking to someone with a rare disease,” I replied. He acknowledged the point. This is how normal doctors talk with to their patients.

Shame on my rheumatologist who doesn’t let me talk to her, who used inappropriate data to dismiss my symptoms, and then finally disparaged me as I pressed for acknowledgement and help. I don’t know if an earlier intervention could have saved me from bursitis and scarred tendons, but now I have a clearly established track record that documents inflammation and I feel empowered to move on to another doctor. I talked to some patients active in our local Scleroderma Foundation chapter, and I have the name of a rheumatologist who is treating several other patients with my battery of conditions.

Which takes me back to my original points that I have been pondering for weeks:

  • When you are chronically ill it is hard to be assertive with medical professionals upon whom you depend. Yes, it is. I forgive myself for crying in the car. I was blindsided and ill-prepared to argue with a specialist who deliberately places patients on the defensive to fend off requests for help. Who could have imagined such a thing? I now recognize that this is a defensive tactic by the physician, it is inappropriate, and I will no longer tolerate it. She took advantage of my dependence upon her to victimize me. If her test results do not account for my observed symptoms, then we need other tests and different thinking. That’s what I learned as a scientist, it is valid, and I will stick to my guns if this happens again. But not with this doctor: I’m moving on!
  • In a life with constant symptoms and annoyances, when is it time to insist that something must be done to help you? Sadly, things are not rosy when living with a chronic disease that has no direct treatment and piecemeal strategies for symptoms. When you can no longer tolerate the life you are living it is time to speak up!!
  • How should I respond when medical professionals insist that test results prove that the symptoms I’m experiencing aren’t really happening? Well, that is poppycock, right? If you are vomiting blood, so to speak, it doesn’t matter what their little image is showing them on the computer! I responded by going to other members of my medical team  and securing medical interventions from them (and thereby building a cascade of supporting evidence), getting full copies of all my test results, doing a literature search on the drugs and tests the rheumatologist was relying on, and activating my network to get the name of a doctor more appropriate for my medical circumstances.
Another rose break.

Today I am 5 days into the increased dose of anti-inflammatory gel to get my bursitis under control and I’ve started my physical therapy again. I am better: I actually lifted my leg to get into the car without assistance! Once again I need to wait a few weeks/months to make sure my kidneys and cell counts are stable before adding another drug like a cortisone injection into that bad-boy hip bursa, but I am making progress and am comfortable with what is happening now.

Believe it or not, after all of this I still don’t have a title for this post. Ugh. What was this about?

Refusing to be a victim!

Manipulating the health care system for fun and (pain-reducing) profit?

Fighting for your mojo when no one else can?

That’s it. Fighting for my mojo. Because, at the end of the day, that’s what I did, and my mojo is back!!

 

Knitting Speed Bump

A few weeks ago I went to see my primary care physician for help with shortness of breath and joint pain. I totally scored! I walked out of there with a tetanus shot (fail), inhaled steroids to control my small airway disease (win) and an anti-inflammatory gel to put on my swollen, painful joints (huge win). What a difference to my life these new medications have made. I can breath! I can walk without pain! I can sleep through the night! This is huge, people. Take that Sjogren’s and scleroderma! Feeling so much better I began to spend more hours up and about, and there was a lot more knitting happening too.

I got some socks finished right up. Here are my project notes.
I made a lot of progress on my Suburban wrap and was lured into knitting more than usual because I just had to get into the next section of the wrap. This is such a fun project with lots of color, texture and lace interest. So addictive. So hard to walk away from…

Oops. Then this happened.

Tendonitis!

One of the problems of getting better is that swelling is going down and the tissue is tightening up on some of my joints. My knees are really tight. My wrists are stiff. When I knit my joints loosen, so I thought I was helping them stay flexible. That is probably true to a certain point, but I guess I now need to be careful to not overdo things. Sigh. I am using the tendons in my left hand the most since I knit continental, and I push the yarn over the needle with my middle finger for each purl stitch. I’m really fast that way, but my tendons have totally rebelled in my left hand and wrist.  To make things worse I can’t take NSAIDS or any other anti-inflammatory drug because of my scleroderma-battered kidneys and stomach. Sigh. My doctor ordered a knitting hiatus.

I want to be a compliant patient, really I do. I read a couple of books, managed to get through a couple of days without knitting, and then I snapped. I must knit!! Want knit now!! Knit, knit, knit. Why go on if I can’t knit? Sniff. Obviously this is totally unacceptable and I am going to figure out how to knit in spite of this bad boy wrist. Really, my left hand is the one having trouble, so maybe I can work around that. I tried to tension the yarn in lots of creative ways before I remembered that lots of people on the planet hold the yarn in their right hands. English knitting. I have never mastered purling English style, but now I’m really motivated!

I was in the last striped section of the wrap when disaster struck; stockinette means I have to purl back every other row. 
I managed to continental knit with the brace on (okay, it is a little loose) and am moving my left hand very little by working slowly and relying on my right hand.
Working very slowly I am also managing to purl back English style. So slow. So awkward. So much safer for babying rebellious tentons.

Last night I finished the stripes and am ready to enter the last section of garter eyelet. Yay. Knit all the way! I can do this! Then it is into the last, ribbed section of the wrap.

Ribbing. That is going to be slow going. I think that I will check out Norwegian purling. Somehow I need to do this without moving my fingers too much. Yay. A new stitch to learn.

I’m on it!

Take that, scleroderma. You are messing with the wrong knitter!!

The Scleroderma Chronicles: Safe House

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

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

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

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

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

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

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

Sunshine It makes me sick! Enough said.

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

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

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

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

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

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

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

And a cat!

It is good to have a safe house.

The Scleroderma Chronicles: World Scleroderma Day

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s why we do World Scleroderma Day.

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!