The Scleroderma Chronicles: July Report

If there is one true thing about scleroderma, it is that it never stays the same. I think of it like the weather or road conditions; as soon as you think you’ve figured out what to wear or the best route to drive to work, things change.  If you are dealing with scleroderma in your life, you just learn to roll with the punches. One day you feel fine, and the next one you have brain fog, your knees won’t bend, and gastritis has come to call. One night my hair just started falling out and strands began snowing down onto my shoulders and arms. I didn’t know if I should laugh or cry…

Ugh. This is scleroderma. Bad days come and go, plans shift, and life goes on.

FitBit
Look at what I bought!

Here’s the deal: I’m doing much better! I’m having a lot of good days!! After months of struggling my doctors and I realized that I needed to go off some of my meds because I was getting much better! My lung volume has increased, my heart is looking normal, and my blood pressure is down. Bam! Time to start getting some exercise, don’t you think? I bought a Fitbit and slowly began to increase my daily steps until I could do 5,000 steps every day. Then I began to increase my active minutes and now, at the end of July, I am logging 3 days of exercise a week. This is huge, huge, huge!! Yay, Fitbit!!

Banana smoothie
I’m drinking a banana/yoghurt smoothie every day now.

If you slogged through any of my June posts (Science and the Scleroderma Girl) you know that I maintain a log of my symptoms, diet, and other data that occurs to me. (Yep. Weather fronts do make it harder for me to breathe. Who would have suspected that! Thank you log book!) This month I added bananas to my diet to see if they would help reduce muscle pain. I think they’re helping, and getting exercise probably helps too. Yay, bananas!

Castor oil.
I bought this to use in my eyes after my ophthalmologist suggested that I try it to help with my Sjogren’s symptoms. Kind of freaked me out as I was taught as a child that caster beans were poisonous…

When I bought this oil on Amazon I noticed in the comments by other customers that they used it on their scalps to help hair grow. Who knew? Maybe that is a thing, I thought. I checked in the scleroderma online forums and decided to oil my scalp once a week. Now, at the end of July, I am happy to report that my hair seems to be growing back. Yay, castor oil!!

Today was the last day of July. It was a pretty good month for me and my scleroderma. There were some definite bumps during the month, but over all the patient scientist approach to managing my trio of autoimmune diseases is paying off for me. Exercise, bananas, and castor oil were big positives for the month. The negatives were discovering that I can’t have any sunshine on my skin, and I absolutely can’t cut down on the stomach acid reducer med. Oh, well, even negative results are good to know.

Wild bunny.
This bunny has taken to sleeping in my front flower bed, but isn’t eating any of my flowers. How positive can you get?

Yesterday I bought a new data notebook. I have some ideas about some new stuff to experiment with…

Science and the Scleroderma Girl rides again.

Bring it on, August!

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Yellow Boy Speaks: Look at this Tegna!

Hi. I’m Yellow Boy.

Cat face.
The Mother of Cats has been knitting like crazy on her new Tegna sweater.

I’ve been really helping the Mother of Cats out with her knitting. It’s a lot of work, but someone (ahem… me!) needs to keep their eye on things while she’s working. MacKenzie told me to chomp her yarn to keep her on her toes, but I’m a good boy. I like to be right in the action without actually sitting on the yarn.

Knitting and cat eye.
See what I mean? 

It’s important that I take a good look at her work from time to time to make sure she’s staying on task. I figure that if I check things over every half hour that’s good enough.

Sleeping cat.
The rest of the time I nap!

The Mother of Cats made really good progress on the sweater and got it finished this morning. It is so cute! She took it right outside and grabbed some pictures of it before the afternoon thunderstorms started.

Finished Tegna sweater.
It looks pretty darn good, doesn’t it? This is what you get when you have quality cat support for your work.
Lace detail of the sweater.
The lace detail is my favorite!

Before the Mother of Cats had finished this sweater she had already started fussing over the yarn for the next one. “So many sweaters, so many choices”, she keeps mumbling as she digs around in the yarns. I think that she has finally made up her mind and has settled on some blue yarn for the next sweater. But first, she is going to make some socks this weekend. Oh. Socks. I don’t do socks. MacKenzie kind of specializes in socks. I like the sweaters. And bugs. I’m a pretty big fan of chasing garter snakes, too. Why can’t the Mother of Cats let me chase garter snakes in the house?

Toy ice by the cat food.
Sigh. Guess I’ll have to make due with my toy mice. 

Notes from the Mother of Cats:

The sweater is Tegna by Caitlin Hunter.  This is my second Tegna sweater, this time in cotton/linen blend yarn. Here are the project notes for this one. I was so proud of my work that wore it this afternoon to go grocery shopping; there was a horrible accident at the check out lane that involved a dropped bottle of soy sauce and a carton of fresh strawberries: my beautiful Tegna is now soaking in the sink… Such is life.

Cat chasing a moth.
Chasing a moth while I was reading in bed. This was truly a duck and cover moment for me…

Yellow Boy is the indoor bug hunter extraordinaire… anything that moves in the house gets caught and eaten. When he is short of entertaining wildlife he pulls out his toys which usually get abandoned at his food bowl. On the morning of the picture he had pulled out all three of his toy mice.

Sweater Troubles

This is all the fault of Ravelry designer Caitlin Hunter. I’m busy knitting away on her Tegna sweater (for the second time… I made one of these last month and I discovered that I needed another) and I have gotten above the lace section at the bottom and am now cruising through the plain knitting section.

Lace detail on knitting.
See. Cruising through the simple stockinette rounds. Easy-peasy, but kind of boring…

I have really picked up speed now that I am above the lace. Woohoo! I may have this done in another week depending on how much I wander off to knit other things like socks because, well, it is just a tad boring… my mind wanders. I start to dream of other projects and about things that I want to do. I think about books I want to read. I think about mowing the lawn. I think about what I want to cook for dinner. I start to plan the next sweater and then I go on a mental wander of yarn stash. Hmm… what is in there? What should I knit next?

I take knitting breaks to drag out yarn in the colors and weights that I think might work for my next project. I go back to knitting, and then on the next break I head back to the stash to pull out another couple skeins that I just remembered. I have literally woken up in the morning thinking of another possible yarn/color combination. The yarn, stored in plastic lock-top bins, starts to stack up next to my knitting chair. My mind wanders more…

Today I dragged out 4 skeins of wild fuchsia painted yarn that my BKB Deb convinced me to buy a few months ago out to the back deck to look at it in the sun with different contrasting yarn combinations. I’m thinking of colorwork here…

Yarn.
Choice #1
Yarn
Choice #2
Yarn
Choice #3

I fussed and worried about my choice, kept looking at how the yarns played with each other, and finally decided on choice #2 as it calmed down the wild colors a little and blended better with the dark undertones in the main color fuchsia yarn. So, what will this be? You are looking at my next project, a Sipila (by Caitlin Hunter) long sleeved sweater that should be done just in time for late summer/early fall.

Kitted up sweater waiting to be knit.
Here is the sweater all packed up and ready to be taken out later when I start knitting.

But wait… I also found this fabulous Uncommon Thread yarn in the colorway Brasselthwaite lurking in the back of the stash.

Yarn.
Look at this yarn! This is dying to get knit up into a sweater. Look at those shades of blue.

At first I though that this yarn wanted to be a Zweig (by Caitlin Hunter) sweater and I matched it up with a yummy gold cashmere blend yarn that I bought from Western Sky Knits to make the lace yoke for the sweater.

Yarn
See, won’t this look great? I love how these colors go together.

Here’s the problem… I have all of this yarn that I’ve dragged down to the knitting arena to go through during knitting breaks. I keep finding colors that I really liked. I kept thinking of different combinations of colors. I had my heart set on some colorwork. Gee, Caitlin Hunter has some really nice colorwork sweaters…

Yarn
Seriously, doesn’t this look like the makings of a kick-ass Sunset Highway sweater? All of these yarns are part cashmere and the same yardage in each 100 gram skein. It’s a sign. I have to make the Sunset Highway!

If I knitted a Sunset Highway I could use the Uncommon Thread for the body and the other three colors would make the colorwork yoke. I really like these colors… I really liked the idea of making the Zweig… I have a lot of skeins of grey yarns with little flecks of color… can I maybe fade them together to make the Zweig, but if I do that , what will I use for the lace section? Hmm… I wonder what is in the stash?

I am knitting like the wind now on the Tegna, and as I stitch I mull over my sweater options. So many sweaters, so much yarn. My goal is to use as much yarn as I can from the stash without heading off to the LYS to buy more. I’m trying. Really, I am. I am determined to have a stash that has shrunk by the end of summer.

So, I have gone down the Caitlin Hunter sweater rabbit hole. Just a little bit…

I am having sweater troubles for sure. May you all have the same. 🙂

MacKenzie Speaks: Another Tegna?! (The Mother of Cats is out of control…)

Hi. I’m MacKenzie.

Hot Cat
It is still hot here. 

The Mother of Cats and I are still staying inside every day because of the heat. You’d think that she would devote herself to helping me cope with the unacceptable weather, wouldn’t you? I mean, look at this fur! Nope. She just turned on a ceiling fan for me and went about her business. I’m not sure she really loves me… She spends more time babying her plants outside then she does me. How could I come in second to a rose? Ridiculous!!

Tea Rose
She has managed to get one of her tea roses to bloom.
Hydrangea
Her hydrangea that she bought this spring really got cooked by the heat (check out those crispy leaves…), but it has put out some new blooms too. Yep, you guessed it. She fusses over this plant more than me too!

When she isn’t outside ignoring me and feeding her plants she spends her time downstairs knitting away on new projects. She started two new ones this week, and would you believe that she started another Tegna sweater?

Swatch
She even made a swatch this time. This yarn is cotton and linen and she wasn’t sure about the gauge (whatever that is… Yellow Boy wants to know if it is a kind of bug…), so she had to try out different needle sizes.
Paw on yarn.
I helped her with that!
Cat and Knitting.
I closely supervised her work, and after a week look at what we have accomplished!
Lace detail on knitting.
Ta-da! Looking good, huh.

She took a break from the sweater over the weekend and made a sock. So cool. So perfect to sleep in my bed with me. Did she put cat nip into it and let me have it? Nope! I’ve discussed this before, but with the Mother of Cats it is always NOPE!!

Yarn
This is the yarn that she started with…
Sock.
…and here is her sock. She plans to make the second one this coming weekend.

So that was the whole week. She did go off and leave us from time to time, and there was some reading, but whatever. What is important is that she spends her time with me.

Cat and Knitting.
Tonight we are back to knitting the sweater.  Finally I am getting the attention that I deserve: grooming, petting, cookies. Lots of cookies!

I’m such a good boy. Do you see how much I am helping the Mother of Cats?

Can I have some cooking now?

>^..^<

Notes from the Mother of Cats:

  • I bought this cotton/linen yarn to make a cute lacy summer top but I was not able to get the gauge that I needed, and because of the lace it was going to be hard to adapt the pattern, and knitting tightly on small needles hurt my hands. Total fail. The solution? Another Tegna! I am so happy with the first one I knit and I think that this one will be a nice layering piece as fall arrives with the longer sleeves I’m going to put on it. My Ravelry notes are here.
  • Poor garden. Even though the heat goes on it is more humid now and plants are doing better. I feed everything in the hopes that roses will bloom again; so far only the tea roses in pots are responding well. That hydrangea is in a pot as I can’t decide where to plant it. I think that it is going to need shade at least part of the day. Poor thing; it really got fried in the first location I tried out. I’m wondering if it can winter indoors in the pot with a grow light on it. Hmmm…
  • The socks are another of the vanilla sock pattern Dave. I’m having fun playing with the colors. My Ravelry project notes are here.

MacKenzie Speaks: So Much Knitting!

Hi. I’m MacKenzie.

The Mother of Cats has been staying inside for days and never lets me sit by an open window. When she does open the window smoke comes in from outside. It’s because there are lots of fires burning in Colorado right now.  I don’t like smoke all that much, either, but it is so boring when the window is shut.

Hot cat.
Do you see how hot and bored I am?

It is also hot. Really hot. You would think that the Mother of Cats would devote all of her time to helping me stay cool, but she has spent the last week sitting downstairs, watching Netflix, and getting lots of knitting done. Today she went outside WITHOUT ME and took all the pictures of what she has been making.

Socks
She finished both of her new socks. 
Sweater
and a new sweater…
Close to You Shawl.
a little shawl to go on the sweater…
Close to You Shawl
and even another little shawl to go on sweaters that are blue or pink.

During all of this knitting did the Mother of Cats remember to feed me cookies and to play with me EVERY hour on the hour? No, she did not!

Hot Cat
so I made sure that she had to take knitting breaks on a regular basis. Try to knit now, Mother of Cats, and I will chomp your yarn!!

This afternoon the Mother of Cats is getting ready to start another pair of socks and we are all sitting downstairs watching the weather radar on television because there is a big thunderstorm right over us. Rain! Thunder! Hail! What is next? This is completely unacceptable. Maybe she will open a window once the rain is over.

Cat
after I get my cookies, that is…

I’m such a good boy.

Can I have my cookies now?

>^..^<

Notes from the Mother of Cats:

  • The wildfires in Colorado have been just stunning in their intensity and unpredictable behavior. We need rain very badly; today it arrived in such intensity that we are now under a flash flood watch, and the new weather brought a tornado to one of the fire zones. Truly, we need a break here in the western part of the United States. This picture arrived in my Facebook feed last night showing a fire in the southern part of Colorado. Just heartbreaking. I hope that the rain coming down now helps them.

  • The socks are another one of the vanilla pattern Dave by Rachel Coopey. I measured the little ball of bright pink contrast yarn and I think that I will have enough to do the band at the top of the sock too. Casting on another pair this evening…
  • The sweater is the Throwback Tee by Wanda Eichler. My project notes are here.
  • Both of the shawls are Close to You by Justyna Lorkowska, a free pattern on Ravelry.
  • I am really, really bad at finishing items once I get them off my needles. Last night I finally sat down and took care of all the loose ends to finish a small stack of items and this afternoon I got the pictures before the rain arrived. Now it is raining hard outside: knitting time!

Goodbye “Science and the Scleroderma Girl”… I’m Heading Back to the Garden

Today is World Scleroderma Day. Gosh, there should be a huge post today that pulls together my whole monthly effort… nope. That sounds just exhausting, doesn’t it. How about we just head out to my garden to see what’s up. After that I can show you the big picture on what I’ve been doing all month in “Science and the Scleroderma Girl”.

Getting into the garden has been difficult for me since the sun and I are not friends. Last week I went out for a couple of hours to weed in the morning in the shade, and yep… I developed a rash on my arms and then the flare arrived. I was holed up for days getting over that little misadventure. After I  recovered I tried out weeding after dark. Gosh, I’ve had more fun moping floors. It just isn’t the same if you can’t actual see what you are doing. I wonder why that is?

Arm
But look at what I scored today while I was out shopping!! Do you see that the pattern is teal colored butterfly wings? How more appropriate for World Scleroderma Day can you get?
Sun protection!
Do you see what is written on this arm? This is a outfit designed to provide full sun protection for people playing in the surf. It is cool, wicks moisture, and will protect me from the sun. This is exactly what I need!
Jacket
Check out the whole top. This plus a hat should set me up for morning gardening, don’t you think?

There are leggings too to provide complete sunblock for the surf enthusiast, but that probably is more than I need to tend to the roses. I usually get wet while I’m watering in the evenings, and once again this baby should handle it fine. I am so set up for the rest of the summer!

Let’s see what is still alive in the garden after a week of amazing, blistering heat. Yesterday it was 105°F; these plants are no longer happy.

Purple flowers
The flowers in the tub on the back porch made it…
Veronica flowers
So did this Veronica. I’ve been transplanting this into several flower beds since it does so well.
Strawberries
Even the strawberry plants are producing well. Look at the berries that I had Tuesday afternoon. I decided to wait until Wed morning to pick them…
Bare strawberry plant
Unfortunately a squirrel beat me to them. This is all that was left, and I’m sure that he left this half eaten berry just to taunt me!

This weekend will be cooler, and I gave all the plants a good watering this evening so that they will recover over the next few days. Poor plants. Life has been tough for the last couple of weeks: heavy rain for a week followed by triple digit temperatures and blazing sunlight.

Now that we are leaving the garden here is my Scleroderma Month of June:

What I didn’t put into this was a lot of actual information about what scleroderma is. Oops. This post that I wrote for Rare Disease Day should cover that glaring omission.

So, this is World Scleroderma Day. All over the world people have posted the pictures of their smiles in an effort to make an invisible, but pretty darn serious, disease have a face. My smiling face is above: a little crooked these days, my lips have gotten too thick to smile right, and my hair is falling out, but I am doing well. Every day brings a new challenge, but still, with good luck, humor and a touch of science, I rise.

Have a good weekend everyone!

Science and the Scleroderma Girl: The AP Therapy Rant

Antibiotic Protocol is an alternative medicine therapy for autoimmune disease. It certainly has a following. Check this out.  There is more information on it at the Arthritis Foundation. It seems to be loosely associated with “Leaky Gut” as it links chronic autoimmune illness to microbial sources originating in our intestines. The shaky model and vague language involved in leaky gut has landed it on the pseudoscience list at Wikipedia.

This has been a really hard post to put together. I have all these little memories and reactions rolling around in my mind, and I struggle to link them together in a meaningful way. Here are some of the things that have happened and my gut reaction (did you see what I did there?) to them:

  • I have a friend with lupus. She has been struggling for years, is on disability, and is clearly in trouble. She is losing weight, her hair is falling out; she is in the care of a nutritionist who has her on severe dietary restrictions and antibiotics to treat her condition. She eats no dairy, gluten, meat, alcohol, or sugar, and continues to take her antibiotics without fail. She is not getting better. My heart breaks every time I see her.
  • My dermatologist placed me on doxycycline (one of the antibiotics used to treat scleroderma in AP Therapy) right after my diagnosis. A year later my lung disease was moving so quickly that I was actually referred to palliative care. I stopped the doxycycline, my rheumatologist boosted the immunosuppressive drug dose,  I was given a new drug for my vascular disease, these new drugs kicked in, and today my lungs look great. Good bye, palliative care!
  • I visit an online support group for scleroderma patients where some people are just devoted to antibiotic therapy. They can be very aggressive in promoting their message and have even private messaged me trying to convince me to switch treatment protocols. Huh? This is kind of extreme. I’m always wary of fanatics because it is more about “winning” and gaining converts…
  • Cat face.
    The Mother of Cats has an active early warning system for fanatics. There is no evidence on Earth that will change their minds…

    So, I already have my back up about AP Therapy. The diagnostic antibodies that I have are to a specific region on my chromosomes (centromeres and kinetochores) that is involved in cell division. Bacteria have their genetic machinery organized very differently from me; why would the defining antibody in my illness be towards an antigen not found in bacteria? (Goodbye leaky gut… it was nice to know you!) That doesn’t mean that I can’t have the medical condition of increased intestinal permeability; correlation doesn’t necessarily mean causation. It also doesn’t mean that antibiotic use doesn’t help some people as the drugs also have anti-inflammatory and cartilage protecting properties, and there is research that shows it helps some patients with rheumatoid arthritis.

Here’s the deal: there are better drugs and treatment options. If you have a mild form of the disease, maybe AP Therapy is what you need. On the other hand, systemic sclerosis is a potentially fatal disease and if it is advancing rapidly the correct response is to go big: use the drugs that have the highest success rate. I feel like I’m a walking poster child for the success of current treatment options. The three drug cocktail (Myfortic, Plaquenil, Losartan)that my doctors are maintaining me on has reversed my lung and heart damage.

Crap, do I sound like a fanatic? Darn. I was worried that this would happen.

I told you, this is a hard post to write. Let me just say I would never, never PM someone insisting that they need to change their treatment plan. Who am I to project my reality onto another person?

What I really mean to say is to think like a scientist: collect data, keep a symptom log, ask questions, assemble a team of doctors to help you, and pursue treatment options that have solid research-backed results that you are comfortable with. Keep collecting data, and don’t be afraid to change if things aren’t going well. There is no best one-size-fits-all treatment plan, but play the odds that are the highest until you get better information. If what you are doing is working, keep going!!

Tomorrow is World Scleroderma Day.

This is a hard, hard disease. All of us with this disease face hard choices.

Hugs to all.