Scleroderma – Page 12 – Yarn, Books & Roses

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!!

So Long, Farewell, Auf Weidersehen, Good-bye… to My Support Group

Okay, this is a rant. This rant is so long and complicated, with so many connections to other topics, that I have considered that I should perhaps launch another blog just to deal with it. Or maybe create an online course for people with complex autoimmune diseases. Something. Because I finally have snapped for sure.

It happened while I was attending my monthly Scleroderma Support group in July. I go to these meetings because I need to talk to people about my illness, become educated about treatments and coping strategies, and to get, you know, support! I want to flock with my peeps!! Usually in these meetings there are introductions, a little sharing, nice snacks, and a presentation by a guest speaker.

This is the problem. The speakers who have been coming are often involved in alternative treatment strategies. As in alternative medicine. As in flat out pseudoscience masquerading as legitimate methods of treatment for our complex health conditions. These speakers have been trained in their “method” and faithfully parrot back what they were told in their training. They have little actual knowledge of human physiology, biology, disease, or science. They are connected to a product or system that they want to sell to us to help us “stay healthy”. They especially tell us that they can help us have “healthy” immune systems and/or take away our pain. Since I am in pain because my immune system is misbehaving it’s hard to not find their messages appealing.

Except… I was a biology teacher. I used to work in a research lab. I know science as a logical process with rules, and this information is so outrageous it causes me to wiggle around in my chair, bite my tongue, and often whip out my cell phone to fact check.

Me: Google, please tell me if Leaky Gut is a real thing?

Google: Are you crazy? Of course not.

Me: That’s what I thought…

But evidently I absolutely, positively need to take this essential oil to protect me from leaky gut. Or the toxins will leak out though the holes in my intestines. This is the cause of many complex illnesses. Research? We don’t need no stinking research. We have testimonials!!

Compression Points on Foot — This pressure point chart was so outrageous I needed to put down the knitting to take a picture!

How about the day I learned that I need to massage my hands and feet at specific pressure points to clean the toxins out of my liver, pancreas and other parts of my body? Really. I was informed that the problem is that the cells of my body get dehydrated, will form tough protective barriers, and the fascia then can’t move fluids throughout the body. This was such a garbled version of reality it was practically science salad.

Me: Google, please tell me exactly what fascia is.

Google: Sure. Fascia is the thin, tough barrier around muscles and organs. It is part of your connective system and made of collagen.

Me: Google, just to be sure, it doesn’t have anything to do with fluid transport?

Google. No, dumb ass. That would be the lymph system.

Me: Google, that’s what I thought. No need to cop an attitude with me, you wouldn’t believe what I’m dealing with here.

As if all this fact checking wasn’t exhausting enough, there is also a hint of “anti-science” in the room. Several other patients have become convinced that we need to stop taking our meds as they have unacceptable side effects. It is better, they argue, to control our disease with diet, essential oils and supplements. OMG! It isn’t possible to google fast enough to keep up with this stuff!

Me: Google, what is this alkaline diet all about?

Me: Google, is dairy inflammatory?

Me: Google, do I need to take massive doses of probiotics every day, or can I just eat yogurt? This speaker is telling me I have to buy their product since I can’t eat dairy anymore…

Me: Google, how quickly do bacteria divide? Every 20 minutes? So I don’t need a massive dose?

Me: Google, is there any research showing a positive benefit of essential oils in systemic sclerosis?

Google: Stop! I have smoke coming out of my ears! Let me direct you to this nice List of Topics Characterized as Pseudoscience. There. You’re welcome.

Lunch — Yep. This is my lunch. See the dairy? That yogurt has 8 live cultures in it and I am not giving it up!!

While loading up on gluten free snacks at the break I finally snapped and asked the group facilitator if she thought it would be appropriate to let people advocate going off their meds and using essential oils to treat their conditions if this was a cancer support group?

“Well, no…”, she replied. “But that’s cancer.”

I just looked back at her until I saw something click in her brain, and then I left. I’m done.

Since then I have been fussing around about why this is happening. I understand that this is a tough disease (in more than one way), but how awful it is that there is so much misinformation out there that people don’t know what is accurate, and what isn’t. Desperate people will clutch at anything that gives them hope. Sometimes these things are based in sound logic, reason and science (stem cell transplants), and sometimes they are not (amber beads for pain relief). Obviously people need to know more about the nature of science, basic physiology, immunology, cell biology, and how the medications prescribed by their doctors work. They need to know their Star Trek!!

That’s right. Star Trek II: The Wrath of Kahn is what I needed to put this into perspective. So many movie quotes, so many posts.

So, I feel a lot better after finishing up my rant, but I still think that I may need to launch a mini-series of posts relating to this. I mean, there are all those pseudoscience cures to debunk. All that biology to share. All those Star Trek quotes.

Stay tuned. If I start the new blog, I’ll let you all know where it is. Otherwise, a lot of my knitting friends are going to be exposed to some biology. Feel free to let me know how you feel about that.J

Seven Happy Shawls

Okay, July was a month that I am glad to see go out the door. I did have some great moments in the month; my sister and niece came to visit, I worked at the summer camp at Alta Vida Alpacas, and I spun my friend Deb’s beloved Jake dog into yarn. Good highlights!

Collage of July — Highlights of July. In the group photo of my family we are (clockwise from the top left) me, my cousin Ruth Ann, my sister Selma, and my niece Melissa.

On the flip side, I lost a war with an invasive weed in one of my gardens and my autoimmune conditions went into high gear. For the first time ever I was unable to sleep due to pain (what is up with my joints and muscles?!), gastritis returned after being good for two years, my Sjogren’s flared (!!) and my lips turned blue. Ugh. I blame the heat and the sun.

Now it is August, I’m on oxygen full time, meds have been changed, and I’m in need of a little cheer. Shawls, I need shawls!! The way things are going right now I want to be wrapped in color. Shawls will give me color, texture, lots of mindless knitting, and defiance in the face of medical adversity. I hit the stash, printed patterns from Ravelry, made my shopping list and when I went on the knitting road trip with my peeps last week I scored everything I needed. May I present to you, Seven Happy Shawls…

Shawls and Yarn — Shawl patterns matched with my yarn. Top row: Antkarkis Shawl (photo credit to Janina Kallio) Middle row: Rainbow Warrior (photo credit to Casapinka) Bottom Row: A Random Act of Color (photo credit to Mina Phillip)

How is this for cheerful defiance! I was really torn about which one to start on, but I’m leaning towards Antarktis.

More defiance. This should keep me going in good cheer until the end of the year. I’m torn about the order to knit them; they are all just too yummy for words.

Shawl Kits — Here they are: seven shawls all kitted up waiting to go. I put the pattern into the box with each yarn, and I’ve already wound the yarn for the top three shawl contenders.

All right August, I am ready for you. Let’s go!!

Notes:

My Ravelry queue can be located here if you would like more information about these patterns and the yarns that I have selected.
I downloaded Fotor for Windows to make some photo collages instead of posting a million pictures. What do you think? I think that you can also make stuff online. It was free, free, free!!

Solaris Shawl: The Blue Lips Special

I’ve really been dragging lately. I’m out of breath, my arms and legs just don’t want to go, and every now and then my chest hurts. This has been going on since around the first of the year, and so far my pulmonologist and rheumatologist haven’t located a definitive cause. It’s a scleroderma thing, they tell me. I’m on oxygen overnight now, my immunosuppressive drugs have been increased, and I’m just maintaining.

That was until I noticed that my lips were blue one morning while combing my hair. Blue lips? That can’t be good. I did some google searches, scared myself silly and then began to check the mirror more frequently during the day. Two weeks later it was pretty clear that I was rocking the blue lip look every time I came up the stairs. I bought a pulse oximeter, and began to record my blood pressure and oxygen levels throughout the day. Finally, admitting to myself that this was a true phenomenon, I called the doctor.

Of course everything went out of control as soon as I made the call. Now I’m in the middle of testing and doctor appointments. Monday was an especially ugly day; I flunked the 6 minute walk test in 2 minutes flat and was put on oxygen in the hallway. Darn!! It’s a sure thing that I will be lugging an oxygen tank around in a backpack in the near future as soon as I finish the current round of doctor visits and testing. My next doctor appointment is Tuesday, and I think I won’t be able to put off the oxygen trolls any longer after that.

So how have I been handling all of this? Well, when everything is falling apart around you, it is best to just knit, knit, knit! Seriously, knitting is positive, productive, meditative, never talks back and consumes very little oxygen. Perfect! I’ve been just cranking out my Solaris shawl over the last week and the end is now in sight. It is going to be beautiful. Check it out!

Edging Detail — Check out the stitch detail of the edging.

Yarn Detail — The colors that I am using all come from one ball of Crazy Zauberball. You can see how the colors change in the ball in this section of the shawl. I just pull off yarn from the ball until another nice color emerges for my next strip of edging. The project details are here on Ravelry.

So, next week should be a big one for little ol’ me. I’ll be seeing my primary doctor for a breathing needs evaluation, hopefully I’ll be saying goodbye to the blue lips, and my Solaris shawl will get finished up.

I’m not sure how this is all going to turn out, but I’ve got a big shawl queue all ready to go.

It is good to be a knitter!

Crazy Knitting

Yep, I am totally knitting on the wild side; I hit the stash last week and pulled out some Crazy Zauberball in the wildest, hottest colors I had. Sometimes you just need to have some zing in the knitting, you know.

It seems like forever since I made something for myself. I made mitts to give to scleroderma patients, I’m still working on the PuppyPaca yarn for my friend Deb, and I have several more alpaca projects to finish for Alta Vida Alpacas. Last week I kind of snapped, found the Crazy Zauberball, and decided to make some fun things for myself. Check out these little bed socks: fun!

Socks — This yarn is Crazy Zauberall, and it is so rewarding to knit with. It is pretty light weight and knit a little loosely in this pattern; perfect for bed socks. Then there is the lace… These Om Shanti socks are from the Socktopus book by Alice Yu.

The heels and toes are knit with a short row technique that really made the toes strut their stuff. Ravelry notes are here.

I have enough yarn left over to make a pair of mitts to wear in bed too. The colors of this yarn just make me happy. I will have to make the mitts for sure.

Mostly the gardening has been on hold this week. It has really warmed up over the last few days and suddenly roses started blooming. Here are the first ones to open…

The Hot Cocoa roses by the front door are doing great. I covered them several times this spring with blankets supported by tomato cages between the rose plants. All the attention has paid off big time! As I was leaving for a doctor’s appointment I glanced at the front of the house and there was the bloom!

Home Run Rose — My Home Run roses by the driveway are now almost 3 feet high and suddenly they also began blooming. These guys will bloom all summer!

The backyard gardens are still jungles, but it rained hard last night so I’m hoping to weed out another flower bed tomorrow morning. How lucky that plants are patient.

Cat asleep on shawl — Kitty revenge can be quite a thing: MacKenzie still hasn’t gotten over the washing of his blanket. He spends very little time on it now, and has taken to sleeping on my “Waiting for Rain” shawl. He’s so sweet I’m letting him keep it for now.

One Crazy Zauberball project just isn’t enough right now. As soon as the bed socks were done I grabbed another ball and cast on another project just for myself.

Yarn — May I present the yarn for a Solaris shawl by Melanie Berg. The shawl is supposed to use 5 different MadelineTosh Unicorn Tails (in five different colors), but I decided to use this wild Crazy Zauberball yarn for the colored sections. There are at least 5 different colors in there; I can always pull off yarn to get to another color if I need to as the colored sections are pretty short.

So why did I snap and start the crazy knitting for fun? The truth is, I’m somewhat miserable these days. For reasons I don’t understand June is the month when my illness decides to get particularity ugly on me. For the third year in a row I just feel pretty darn sick. My muscles and joints hurt, I’m dizzy, my gut is misbehaving, I’m running a fever, my arms and legs have developed edema… I got out of breath and had to use my inhaler while winding a ball of yarn last Wednesday at my knitting group. I’ve been in to visit doctors twice already this month, and really, there isn’t too much that they can do. I’m in a flare for sure. Mostly I don’t leave the house much, but I can still knit.

You see why I broke out the Crazy Zauberball? Bright happy colors that change quickly. How can I not smile while knitting lime green and deep rose? This month I totally need some knitted hugs of happiness, and Zauberball delivers big time.

Got to go. I’m at the part of the shawl where I start knitting in some crazy color. Bright purple! Woohoo!

Have a great weekend everyone!!

A Break in Routine: Oxygen, Snow and Bad Cats

So much snow! Last Friday night the rain started just as I was heading to bed, and in the morning there was already several inches of snow on the ground. It just poured snow for the next 24 hours, and even though there was a lot of melting (thankfully on the sidewalks and streets), it really piled up on the lawns and in the trees. When it was over I had over a foot of heavy compacted snow on the deck and lawn.

Snow on flowers — Sadly the snow hit just as many of the ornamental trees were in full bloom. This tree, which might have been a crab apple, really got socked in snow.

Trees all over town lost branches as the weight of the snow became too much for them. Ever an opportunist, I brought some of the blooms from broken branches into the house.

The blooms were a happy addition to a basically unhappy house. Last Friday just as the storm was getting ready to break I got a call from the pulmonologist’s office; my test results were back and she was ordering supplemental oxygen for me to use overnight. It was kind of a shock as I’d convinced myself that my lungs weren’t that bad. Less than two hours later the machine had arrived and was set up for me to use.

Oxygen machine — Here’s the oxygen condenser that I need to use while I’m sleeping. It buzzes, vibrates, and makes other noises that scare Yellow Boy. Cat harmony is definitely not being maintained. I’m getting used to it pretty quickly; it is kind of like sleeping in an airplane. 🙂 Now that I am getting more oxygen during the night I’ve noticed that my morning chest pain is gone. That’s is a good thing! Sorry Yellow Boy, the machine stays.

You never saw such unhappy cats. Between the snow and the machine they were just miserable.

Cats at back door. — Here they are anxiously waiting at the back door to be let out first thing in the morning. MacKenzie is just awful about this. He starts meowing (yowling!!) and scratching at the wood at 6am. He doesn’t come upstairs to wake me up because, well, machine…

Cat at computer — Cats do sulky outrage. MacKenzie especially has been a pill all week. He was all over stuff when I tried to work at the computer. He demanded endless treats. He followed me from room to room and participated in all crafting ventures. If I stopped paying attention to him the paw (with attached claws) came out.

Cat — He took to lurking in the “launch tube” part of his cat tree at the back door. Every time I opened the door he streaked out before I could stop him. We had some scary moments when he got past me into the garage and the electric door was closing. Truly, he was a handful all week.

Mac and Me — Tonight it has been a week since the scary machine and the snow arrived, and things are almost back to normal in the cat world. Here he is purring on my lap and posing for a selfie. What a sweet boy. Ha!

This weekend is going to be nice and the last of the snow should melt. The cats are slowly adjusting to the new machine and this morning we slept in a little. All is once again right in the cat world.

Next week’s forecast: thunderstorms!

I haven’t told the cats yet.

Rocking the Week #6

Here is my crazy week with a lot of picture support.

Bee on blooms. — Last Thursday I went to the first appointment with palliative care. On the way in from the parking lot I had to walk under blooming trees. Look! The first bee of the season. 🙂 You know, it was hard to get this shot with the phone camera… I think that I entertained some of the other visitors to the clinic while I chased this little guy around.

I’m pretty sure I’ve flunked out of palliative care. Here’s the problem: I need someone to help me manage my overall medical care (since I have six different doctors at this point…) but they don’t really do that. They do help people with serious end of life decisions and provide medical options to ensure their comfort; I got some great advice and then they kind of turned me loose back into the health care stream. I’m kind of a catch and release palliative care patient: they will call every three months to check on me, but basically I’m doing pretty well. I have a serious illness, but I’m not yet seriously ill enough to really justify taking up their time. I’m already doing a lot of the things that they encourage patients to do (and so do all of you, too.) It’s really important to do something that helps with stress like meditation (or knitting, spinning, and weaving!) and they told me to start keeping a journal (Oh, you blog? Never mind! Just carry on with that, they said.) Really, it was encouraging. They told me to use the inhaler as much as I want and to go to more frequent appointments with my primary care doctor. Check. I can do that. 🙂

It is good to think about end of life decisions, though. Here’s how I reacted: I called my kids (and grandson) and told them that we need to all go to Walt Disney World for a fun vacation. We will ride the Monorail, buy Micky Mouse ear hats, go to the Star Wars attractions, and it will be wonderful. I’m also systematically cleaning out all of my junk from cupboards and the garage. Does anyone want my Great-Aunt Alice’s set of crystal platters? How about a classroom set of homemade DNA models? A well-used heavy duty 3-hole punch? Right. All those things are out of here!!

Hummus — Friday I decided to go wild and made homemade chickpea hummus using the recipe from fellow blogger Ros (Cooking Up The Pantry). I cooked the chickpeas in my crock pot for 6 hours on low, and then everything went into the food processor. Oh, my goodness! Several days later I am still eating it with veggies and warmed flat bread. Yumm!! All of the food Ros has in her blog is to die for. Seriously. I would knit for her for food.

I’m still weaving on the dishtowels. I’m getting towards the end of the warp: this is the fifth towel in the set. Weaving is really quality time for me. I worry about the plot of the book I’m reading, come up with my grocery shopping list, and dream up new patterns for fingerless mitts. Once I’m in the zone it is like magic.

Pansies. — The last two days have been warm and I’ve started clearing out the flower beds. Look! Pansies that survived the winter!

and of course the Phlox has started blooming. I have a big bed of this and it keeps sending out satellite colonies of phlox all over the yard.

Edge of shawl. — Isn’t the yarn yummy? this is LYDIA sock yarn in the colorway Garden Party. I added a picot edge to the bind off.

Book and knitting — Tonight I’m working on my Snowfling Mitts again and reading my current book. The suspense in the book is just killing me. Every few chapters I have to take a little knitting break. 🙂 If you can’t read the title that is **Every Fifteen Minutes** by Lisa Scottoline.

It has been really nice this week; warm and sunny with blooms and bees. However, this is Colorado; we have a winter storm warning posted for tomorrow because a humongous storm is roaring in to dump huge amounts of moisture for the next 5 days. Seriously. I’m wondering how many inches of snow is made by four inches of water. The storm is the big story on the news and each update reports it to be building in intensity from the last report. Yikes! Maybe I should pick up speed on the mitten knitting.

That’s OK. I have hummus, books and yarn. I am all good.

Have a great weekend everyone. If you should happen to see a snow shovel, think of me.

Trail of Crumbs

I have been struggling for weeks and weeks now. I had the flu not long after Christmas and it just never completely went away. I have a pain in my chest, a cough, fatigue, and I just run out of air more easily than I should. Seriously. I have trouble talking and breathing at the same time if I come up the stairs at home. This isn’t reasonable. I was having trouble climbing stairs before I got sick, but now things are ridiculous!

This is the joy of life with a serious chronic illness. There are so many little symptoms and problems it is hard to know what’s important and what is just another day of systemic sclerosis. I tend to wait out symptoms for a couple of weeks before I contact a doctor; then I’m at the mercy of waiting for lab results and a call back. Ugh! Things drag on for days and weeks as I process through my medical team asking them to find out what is wrong with me.

Cat — Mom stays in bed all day reading mystery books that feature a librarian and a giant Maine coon cat. What is up with that?

For two months I have been bouncing back and forth between my rheumatologist and my internist. My rheumatologist has been concerned that my heart is misbehaving (and sends me on to the internist), and the internist suspects that my lungs are to blame (and refers me back to the rheumatologist). It’s like following a trail of crumbs hunting for answers to an ill-formed question. No test result provided a clear diagnosis.

Except I can’t breathe, and it seems to be getting worse.

Two weeks ago on my way home from my weekly knitting group I was hit with a surge of assertive self-determination. Time to stop acting like a victim, I told myself. Instead of going home I drove for another hour north and requested a full copy of all my medical reports from the hospital where my pulmonary function and echocardiogram tests were done. I knitted on my shawl in the lobby while waiting for the reports, and then took them home with me in my knitting bag.

I am a lucky, lucky woman. I have a molecular biology degree and I once worked in a rheumatology research lab. I taught advanced placement biology for years and I know a lot more anatomy and physiology then the average patient with my condition. I should be able to follow the trail of crumbs within the stack of medical records, I reasoned. I laid out the lab reports in sequence, looked for patterns of change in my lung and heart test results, and took to the internet to understand what strange acronyms meant. I found a presentation that explained pulmonary function tests. Well, dang. Even though the summary notes from the physicians who interpreted my lab test used words like mild, early, and upper range of normal, it was clear to me that my lungs were getting worse over time. Maybe a lot worse.

I emailed my rheumatologist a note telling him that I had picked up up my tests and saw that my results suggested early interstitial lung disease (the summary of the latest test). I reminded him of my symptoms and asked about next steps for me in addressing/diagnosing my ongoing problems. Here’s the deal: an email is part of my official medical record. More than a phone call, it should provoke a response.

Oh, it did! I received a call within an hour from his office. In the next week I had two phone conferences, another echocardiogram, and a referral to a pulmonologist. I was able to refer to specific data in all of my conversations with my doctors. I got a prescription for a badly needed rescue inhaler. Finally! Forward progress!!

Yesterday I saw the pulmonologist. It was a beautiful warm day and a perfect drive through the countryside to get there. What a wonderful, wonderful doctor! She made it clear that I am not over-reacting, I do need better coordination of my health care, and she will be a warrior for me. I wanted to hug her. Here’s what happened during the visit:

I do have interstitial lung disease, and it is serious; almost 20% of my lung volume is already gone. This is bad news because it happened while I was receiving drugs to treat the systemic sclerosis. I will be completing more tests over the next week to nail down the diagnosis, but there is already so much damage that she will coordinate immediately with my rheumatologist about treatment options; she sent him the message while I was still in the office. I think that I will be seeing more/different meds in the near future. I may be going on oxygen overnight. I hope that I don’t have to do IV infusions. I have been referred to palliative care and will be receiving a case manager to help me locate resources and to coordinate my ongoing care with the medical team. I plan to ask the case manager if I should be referred to a scleroderma specialist at the University of Colorado, but I totally want to keep this pulmonologist!!

After so much time trying to get some answers/help the response was actually overwhelming. I came home and for the first time since I was diagnosed I cried.

Welcome Bear — The front yard “welcome bear” could still be seen between snow drifts when I went out to shovel. Cute, huh!

Today I woke up to a full-blown blizzard; howling wind and almost 2 feet of snow! I didn’t get any calls about medical appointments and I certainly didn’t make any. I knitted, shoveled snow (slowly!) and enjoyed the break from the immediate crisis. I started the next book in my mystery series. I worked some more on my shawl; it is going to be beautiful. My roses are safely enveloped in an insulating three foot drift of snow. I was able to successfully advocate for myself and secure medical treatment. Tomorrow the sun will be back out and I will start scheduling appointments.

This is not the journey that I would have chosen for myself, but I will travel it as well as I can, knitting, reading and tending my roses all the way.

Life is good.

Rare Disease Day

Today was Rare Disease Day. I woke up with notes in my email box reminding me that this was the big day. Oh, yeah. I guess I should say something about it on the blog, but what? I mean, I do have a rare disease, but why should anyone else care about it?

rare disease day I spent most of the day thinking about that. I worked on the loom (weaving is right around the corner!), cleaned the house, cooked a yummy dinner, and pondered the relevance of rare diseases throughout the day. For a while in the late afternoon I almost started writing, but ended up knitting instead. Now it is evening and I think that I might be there.

You see, anyone dealing with a chronic condition eventually comes to terms with their altered life. Grace under fire becomes the status quo. We deal. We lean in. Maybe the big success of the day was taking a shower or getting dinner cooked, but by golly we did it!!

If you have a rare disease, it is a little harder yet. People have never heard of your condition. Your doctor may have never treated another person with your disease before. Your friends and family sometimes suspect that you might be an attention-seeking hypochondriac. You wander the internet looking for answers. There is little research being done for your disease because so few people are impacted by new drugs or treatments. In a world with finite funding for medical research it makes better sense to put the money where the most patients are: cancer, diabetes, heart disease, asthma. I get it.

The purpose of Rare Disease Day is to shine a little light on the many, many conditions that are classified as “rare”. It is also a campaign to raise some awareness about the human impact of being a patient with one of these conditions. To be frank, it kind of sucks!

You see, rare diseases are also referred to as “orphan diseases”. You do feel like an orphan. Alone, alone, all alone. I’m lucky to be hooked up with other people who share my condition, but that is because I live in a large metropolitan area. I have systemic sclerosis*, which is considered the most severe of the diseases in rheumatology. There are only 100,000 of us in the United States (which, if my math is right, is 1 in 50,000 Americans), so if you live in a small town chances are you will never find another person who has the same illness that you do. I am lucky. I belong to a support group and have found online resources, the most important of these being you people who take the time to read my blog.

Here is what I decided is the most important message that I should put out on this day set aside for me and all the many, many other people who deal with a condition/illness that no one has ever heard of before. If someone says, “I have (crazy-ass disease you’ve never heard of before)”, don’t say, “I’ve never heard of that!” in a dismissive manner as you turn away. Say instead, “What is that?” Invite the person that you are talking with to teach you about their unusual condition. Really, it will mean the world to them.

They will feel less like an orphan if you do.

*Systemic sclerosis, which is serious form of scleroderma, is an incurable, disabling, and progressive autoimmune disease that causes inflammation and scarring of the connective tissue of the skin, blood vessels and internal organs. It is often fatal, but in recent years the survival numbers have improved due to new therapies (I love my immunosuppressants!). Currently there is no drug to directly treat systemic sclerosis but there are drugs and treatment strategies on the way. Right now there is a bill in Congress to fund scleroderma research called the Scleroderma and Fibrosis Research Enhancement Act, H.R. 3666.