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!!

 

The Scleroderma Chronicles: The Fourth Year Report

Wow. It is hard to believe it, but it has been more than 4 years since my diagnosis: Limited systemic sclerosis (scleroderma) and Sjogren’s disease. Time just flies when you are having fun, right? Seriously, I have been reflecting for a few weeks about what to write to mark the end of the fourth year. Should I write about how strange a dichotomy scleroderma is: people tell me that I look good, but what they can’t see is how my entire life is organized around accommodating my illnesses. Maybe I should write about how I have developed a Zen-like patience as I hit each roadblock; why worry about things you can’t change when in the course of time all will become more clear? Maybe I should talk about growth. Personal growth in the face of a heartless disease as I came to terms with my own ability to become an active member of my treatment team and to assert myself in the face of medical experts.

Done! Personal growth it is!

Author wearing an hand knit shawl.
Even in the worst of times it is possible to create items of beauty that provide comfort and are therapeutic. I knit this shawl last spring while my doctors were determining if I had developed potentially fatal complications of systemic sclerosis: pulmonary hypertension or heart failure were the candidates. There was nothing to do but to knit on as I waited for test results.

When I was first diagnosed I really did go through a time of sadness and grief.  It just came in waves for me as I began to figure out that systemic sclerosis and Sjogren’s are both incurable and difficult to manage. Then I realized that they might be disabling. Then it finally dawned on me that they might be fatal.  To my horror I discovered that the 10-year survival rate was 60%. There would never, ever, be a “better”, I thought. The best I can hope for is becoming stable and maybe getting some softening of my skin.

The great unknowns of scleroderma really wore me down. Doctors kind of dodged my questions or referred me to another doctor on the team. I was afraid, and I didn’t want to make too much of a fuss because I was dependent on the medical specialists and I didn’t want to alienate them. I was struggling, weak, and truly a victim of my disease.

Flash forward 4 years. Things have changed. I began to keep a food log and journal and I worked out dietary changes that helped me. I participated in a self-management study, and I attended a couple of conferences. I remembered that I was trained to be a scientist, and I employed logic and reason in my scleroderma life. I spent a lot of time with Doctor Google and reading research papers at PubMed. I fired a rheumatologist, found another one, and convinced my primary care physician to meet with me regularly and to filter all the test results and doctors notes into a cohesive action plan. My care improved as I communicated better with my doctors and they developed a good sense of me and the other doctors on the team. My power over scleroderma grew as I faced down crisis after crisis. I may not conquer this disease, but by golly I will be brave and give it a good whacking!

Here’s an example of what I’m talking about. I have to get routine blood testing to make sure that I am tolerating the drugs that I’m on well. I went for the blood draw two weeks ago, and a couple of days later I got a phone call. There was a problem: a liver enzyme was suddenly elevated above normal ranges. I was told to head on over to urgent care to get checked out. I’m a compliant patient, so that is what I did. This is what happened when I met with the doctor in urgent care.

Doc: You’re fine. It’s just a bad test result.

Me: I have been experiencing worse (crushing) fatigue for the last two weeks as I’ve been fighting a cold and my muscle pain is pretty bad. I have been staying in bed two days recovering for every day up.

Doc: I think that we should put you on prednisone.

Me: I am very nervous about that. I’m already pretty immunosuppressed, and my pulmonologist has specifically told me to refuse steroids if I hit the ER.

Doc: Then we should start you on Cymbalta for the fibromyalgia pain.

Me: That is a drug that I’ve seen advertised that seems to have a lot of side effects. I just came through a rough patch because I was overmedicated this spring, and I’m nervous about adding another drug due to possible kidney or liver complications.

Doc: Can I at least offer you some antidepressants since you say you have trouble getting out of bed?

Me: I have fatigue not depression. It’s part of my illness.

Doc: Most chronically ill people have depression…

Me: Yep. I’ve dealt with anxiety and depression in the past. This isn’t depression.

Doc: But you will feel better.

Me: Hey, I’m not here seeking help with my illness this afternoon. I got sent here by rheumatology because of a high liver enzyme result, which you feel we should ignore, and I have chronic kidney disease. You want to prescribe a drug that will be cleared by one of those two organs? I’m not comfortable with any more medications without talking to my other doctors first. (I start edging towards the door to escape this frustrated pill pusher… maybe he just is excited to have a patient with a rare disease and wants to contribute, but I am out of here!)

Seriously, I do feel like I am living in a soap opera half the time that is being directed by my bossy cat. A soap opera staring yarn, of course!

Cat being petted.
But he is also a great source of comfort. Here he is hanging out while I was knitting the shawl that I’m wearing in my picture.

That little episode put me back into bed for another day, but I was strong, I felt informed about my illnesses, and I didn’t allow a strange doctor who was dismissive of test results to prescribe me new medications. I have grown. My thinking about what is acceptable medical care has crystalized, and I feel empowered. I will talk about these drugs with my current team, and there will be a consensus decision before I start anything new.

Over the weekend I decided to double my dose of krill oil and to eat a banana every single day. 10 days later I am over the cold, I feel much better, my muscle pain is almost gone, and it seems I am through the flare. Yippee!

So, four years into this ugly disease where am I at? I am stable! The drugs that I am on have greatly increased survival rates for systemic sclerosis patients. My skin has softened some and I have pretty good function. My Raynaud’s is well controlled. My lungs, heart and kidneys have improved and my hypertension has vanished. My GI tract continues to rule my life, but I have gotten better control with a careful diet. Fatigue and pain stalk me continually, but I was thrilled to hear this week that my eyes have also improved since my ophthalmologist started me on krill oil. Hug a krill, everyone!

I have grown, and I am stronger for it. There will be many more adventures and bumps along the scleroderma road, but I am good. My priorities have shifted, and my values have clarified. I value the small things,  have lost interest in making money, and budget my time ruthlessly. Scleroderma as a personal growth plan. Who knew?

Tomorrow I go in for the repeat blood tests to see if that enzyme is now back into normal ranges.

Whatever happens, I am good.

The Scleroderma Chronicles: Days of Wonder

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

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

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

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

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

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

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

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

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

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

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

I wonder what will happen tomorrow?

Immigrant Story

Today is St. Patrick’s Day. It’s kind of a fun day here where I live. People wear green, there are parades, bodies of water (and beer) get dyed green, and there is some serious partying that can occur.

I’m Swedish-American, so I don’t really get wrapped up in the whole wearing of the green thing. In fact, when I was in grade school kids would pinch me black and blue on St. Paddy’s Day because I wasn’t wearing green; the teacher would give me a little green shamrock to pin on my dress so I would be safe. People acted like this was normal, but it made me a little cranky, to be honest. Why was it OK for me to be pinched because I wasn’t like the other kids? Why did I have to pretend to be Irish when I wasn’t even a little bit?

I knew I was Swedish. We had stinky lutfisk at Christmas and really great cookies. I didn’t foist lutfisk on anyone else (if you’ve ever been exposed to this stuff, you will understand that only the worst of the worst should be bullied with lutfisk…), or even share my cookies, so why should I have to wear green? I was Lutheran and the Irish kids were Catholic. The Jewish kids had candles, dreidels and chocolates instead of Christmas. It was all good in my eyes; everyone was an immigrant as far as I was concerned.

Years later I gave my grandmother a blank journal and asked her to record our family’s story. Wow. As it tuns out, it is a pretty good one, so I want to share it with you.

Anderson Family Portrait
The Anderson Family in America. From left to right: my grandmother Irene, her father John Alfred, her sister Alphild, and her mother Selma. My grandmother Irene was the first person in her family to be born in America.

My great-grandmother’s story is one that is not all that unusual; she came to the USA as a young women, worked in service, met a young man at her church, married, raised a family, and had a good life. My great-grandfather’s story is the one that I want to share.

John Alfred Anderson (known as Little Al) was brought to the USA by his parents when he was 4 years old. I’m not completely sure of the date, but it would have been 1862 or 1863. His mother died soon after they arrived, and his father returned to Sweden leaving the children behind. Little Al was left with an older, married sister and his brother was adopted by another family. When he was 11 years old his sister could no longer support him and he became a child on the streets of Chicago. He was on his own during the Great Chicago Fire and lost his most precious possession, his bag of marbles, when he buried it for safekeeping on an island in the Chicago river. To make things worse, Little Al was a Swedish child, and there was prejudice against Swedish immigrants; chances are he did not speak English.  The odds were not in his favor.

Believe it or not, it all worked out. He became active in a Lutheran Church and was supported by that community. He somehow came to the notice of Julius Rosenwald, the great Jewish philanthropist, who “helped him acquire his engineer’s license and then hired him to provide the steam-power for the sewing machines in one of Mr. Rosenwald’s garment factories”, as my grandmother related. My grandmother remembered getting a new coat twice a year from Mr. Rosenwald; he would have her mother come to the factory to pick out the fabric and he would personally select the lining and buttons. Later in life Little Al became a citizen, started his own business, the girls grew up, they both married, and they all lived good American lives.  There were amazing adventures later on in the family, but those are other posts.

When I said that I was Swedish-American, that was the literal truth. I’m half Swedish (on my mother’s side), and on my father’s side my ancestors have been here in America for over 300 years. They settled in the original colonies along the Atlantic coast, fought the American Revolution, and lived during the time when our constitution was written and the USA was born.  They eventually left the coast, crossed the mountains, and settled in a western wilderness known as Tennessee; their story is truly an American one. But each branch of my father’s family all started as immigrants, every single one of them.

Today immigrants are under attack here in America, and there have been numerous bomb threats and instances of disrespect directed towards members of the Jewish community. People are confronted for speaking a foreign (non-English) language or for dressing in clothing that reflects a different culture or religion, and they are told that they should go back to “their country”.

We are a nation of immigrants. My mother’s family here in America was saved by the kindly intervention of others and by a man of a different heritage and religion who reached out to help him. Just as it was not OK for me to be bullied as a child for not being Irish, or for others to insist that I needed to pretend I was Irish, it is not OK to marginalize or discriminate against others who are different from us or who are just now arriving on our shores.

My father’s family fought so that this would be true.

This is our story.

This is America.

 

 

 

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.

    Oxygen machine
    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.
  • Quilt and socks
    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”
cat
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!!

We Are One

There are small moments when everything that you know suddenly shifts in its frame and the future becomes something that you never imagined could come. You get a diagnosis, you fall in love, you win the lottery. Such was the moment when, while teaching my third period biology class, I glanced towards the door to see an assistant principal and a counselor standing there motioning for me to come out of the room. Once I was in the hallway with them the questions started: Where are your children? Where does your husband work? It was the day of the Columbine shooting.

Columbine High School was one of the two major high schools in my community. My youngest child had just graduated from the other school, Chatfield Senior High, the previous year. I and my immediate family were safe, but the impact was still dreadful. That night I drove home past police in assault gear standing guard at critical intersections; they had positioned road equipment to block the intersections if the “terrorists” tried to escape.

I was a high school teacher. I knew that there are many dark sides to kids in crisis. I imagine that this is also true of the general population, but I had seen enough in my classroom to know that some young people want to burn the world down, and death is not a deterrent to them; the young can be very volatile and especially vulnerable as they are still becoming stakeholders in society. I was pretty sure that the attack was actually being done by students. At the time it was hard to imagine; now we know better.

The impact on the community was dreadful. Here are some of the standout memories:

  •  Crosses were erected on a hillside and piles of flowers, toys and candles appeared on street corners. Finally, tents were erected over the mounds of offering to protect them from the weather.
  • Columbines were displayed everywhere in remembrance. To this day there are still Columbine license plates on cars in Colorado.
  • People huddled together in crowds holding candles against the dark as they mourned together.
  • My students were terrified to come back to school. Some of them asked if I would take a bullet for them. I will, I told them. I will keep you safe, I promised. Now I know that I lied.
  • I cried when I realized that the girl on the cover of the Rocky Mountain News (the image above; photo credit to the Rocky Mountain News) was the cousin of one of my students. She was in the library during the shooting. Not all of the others under the table with her survived.
  • I spun some white cashmere yarn while watching the memorial service on television. I never dyed the yarn so it would match the color of the doves released that day. I still wear the scarf.
  • During those sad days I woke from a nap as a large helicopter flew low over my house. It was President and Mrs. Clinton on their way to meet with the Columbine parents, and the helicopter was Marine One.

Columbine was closed for quite some time after the shooting, and the students of Columbine HS finished their year at the high school near my house, Chatfield; the school ran split sessions to accommodate the two student populations in one building.  Early in the evening right before the Columbine students started at their new school I drove past Chatfield on my way out of the neighborhood, and I saw that Chatfield had been wrapped in a huge ribbon that combined the colors of the two high schools: silver, blue and magenta. There was also a sign that said, “We Are One”, a play on the school district number, R-1. The two schools would become one.

We Are One, I told myself. I turned right and started driving down the hill towards the golf course to the north. Streams of parents were coming up the hill on both sides of the road, clutching each other, walking back towards the high school. They were the parents of the Columbine students, coming to a meeting at the school where their traumatized children would end the year. I continued down the hill and across the bridge with tears streaming down my face.

We Are One.

Today I live in Aurora, Colorado, and everyone knows about the shooting that happened in the theater there. I blogged about my dismay at the huge gun culture (and the money it produces) as evidenced by the unbelievable plethora of gun (shooting) related magazines in the local book store last July. Then last year there was a mass shooting in San Bernardino, California, which is the town where I grew up as a girl. How many mass shootings will I have to deal with in my life? Why should anyone ever have to deal with even one?

Orlando, my heart is broken. I am so very, very sorry that this has happened to you.

We Are One.

Rocking the Week #7

It was a really busy and productive week. I already wrote two posts about parts of it (finishing the dishtowels and the cause of bad, bad kitties), but here is the rest of the highlights of the week.

Mitts and Markers
Sorry for the quality of the picture. It’s cloudy outside but you can still get an idea of the glorious color of these mitts. While I was weaving this week I wished I had light weight mitts that hugged my wrists and stayed put above my knuckles while I was working. Here they are! My project notes on Ravelry are here if you want to make a pair too. 🙂 I also made stitch markers from some of the glass beads that I bought at the Interweave Yarn Fest a couple of weeks ago.
Cat and Mitt
I also got the first of the Snowfling Mitts finished (well, except for the top of the thumb…) this week. These mitts also are lined so there is a lot to still knit, but I am happy with what I have so far. I love that Purple Dragon colorway!! Here are the project notes.
Yarn
On Wednesday I went to knitting and discovered that the store had gotten in a big shipment of Madelinetosh. My friends helped me a little too much as I hunted for yarn for a new shawl. I’m so happy with my “Waiting for Rain” shawl that I am going to make another in the grey, and the colored yarn was too nice to leave but is still waiting for its calling. That shawl pin goes with both colors. Maybe I can make the pink shawl have lacy ruffles that will stick out under the grey one so I can wear both shawls at once. I’m drowning in possibilities here, people!!  Feel free to make suggestions for the pink ruffly shawl…
More Yarn
Then my friends convinced me that I had to make an Exploration Station with these colors…
Plastic case
and then I found this little plastic case to carry knitting essentials. It has all of these little compartments to carry stitch markers, cable needles, sewing needles, etc.
Folded Case
and it all folds up into one tidy little package. Just amazing!! Just what I need. It was hard to buy only one of these…
Grandson as an Ant
Yesterday was Earth Day, and I went to my grandson’s performance of Goin’ Buggy at his school. Isn’t he the cutest thing as a Red Ant?
Flowers and Chipotle
On the way home I stopped by the nursery and got these flowers to put out front (it was Earth Day!!) and bought a burrito bowl at Chipotle. While I was eating I noticed the picture on the bag. Say, what? Soldiers, helicopters, buckets of fish?? How unusual…
Chipotle Bag
Then I turned the bag. There is a story here for sure, I told myself. Yep. On the other side of the bag I found this story about a young child eating his last dinner before leaving a refuge camp for America. It just brought tears to my eyes. You can read the essay by Fue Xiong called Two Minutes About Sardines here.

What an end to the week. This refuge/immigrant story just meant so much to me. Over the years I have taught many refuges to this county, but during one of my last years in the classroom I taught all of the “sheltered” biology classes at my high school. “Sheltered” classes are for students who are acquiring English as a second language, and the students are all mixed together. They were from Somalia, Congo, Mali, China, Myanmar, Peru, Syria, Mexico, Viet Nam, you name it. They were all a little shell shocked, earnest, hard-working, respectful and determined to survive. They were caring and supportive. They learned English and biology from me, and I learned so much more from them. I still have some of their labs and writings. They all made me a better person and appreciative of how many things I have that would be easy to take for granted. Earth Day, indeed.

What a nice end to the week. A special morning with my grandson, a great lunch and some food for my soul at the same time.

Have a great weekend everyone!!