Life Lessons – Yarn, Books & Roses

The BioGeek Memoirs: Cottontail Rabbit

My neighborhood is just awash with cottontail rabbits. They are just dang cute and hang around houses and gardens where they snack with absolutely no remorse on lawns, gardens and weeds alike. Okay, they can be pests, too. I used to live on a street where you had to stop the car, get out, and chase the bunnies out of the street before you could drive through. It isn’t that these bunnies have a death wish; they sense danger in the movement of the car, freeze, and do their best to look like rocks. That’s the life of a bunny: everyone wants to eat you for lunch. Your best bet is to hope to look like a rock.

Cottontail rabbits at the edge of my driveway.

Where I live there are three distinct species of cottontail rabbits: the mountain cottontail, the desert cottontail, and the eastern cottontail. Since I live on the plains of my state (Colorado) and not in the mountain or desert portions, I’m thinking that the bunnies that I know and love are the eastern cottontail. These little guys (about 2 pounds) hang out in shrubs and under decks living their best little bunny lives while raising youngsters all summer long. Yep. Things can certainly get out of hand quickly as they can have more than one litter a year.

I had a beloved cat who caught an even dozen baby bunnies in one year. We don’t talk about that in my house. We still had to chase bunnies out of the street when we wanted to drive to the grocery store.

Does this look like the face of a bunny murderer?

I became enamored with cottontail rabbits when I was working on my master’s degree as a biology teacher. I had just received a digital camera as a gift and was walking the circuit around a local pond taking pictures for a project that I was working on. I got shots of plants, birds, a muskrat swimming, an extremely cute prairie dog, and this cottontail rabbit.

I loved this shot of the rabbit. It quickly became a focal point of the master’s project for my degree program.

Here’s the deal: you have to have some animal (or plant) to use to anchor your biology program. All the major biology books these days carry with them a plethora of support materials (paper and online) and in the field we all refer to individual programs by the animal/plant featured on the books. When I was in the classroom the programs were referred to as the “owl”, “elephant” or “killer whale” books. It looks like the current editions of the books I taught from are now “honeybee” and “lotus” books. Cool, huh. Anyway, I created as my master’s project an online platform to anchor my biology class. Students (and parents) could see what we were covering each week, get copies of all the worksheets, pick up their make-up work from me online, and get explanations/links to all of the standards and grading rubrics used in the course. I even had some videos and pdf documents of the lecture notes when possible. I handed out little business cards with the bunny’s photo on it to parents at teachers’ conferences. I won some grants to expand the website and eventually created online-only biology courses for my district.

Everything I did featured that wild bunny. I branded the whole thing Wild Bunny Biology. That wild bunny took me to a national conference where I presented my online website and shared tips/info/strategies on how other teachers could make their own. Eventually I began to sell some of my work products online to other biology teachers. The name of my little biology shop was called, of course, Wild Bunny Biology. Oh, yeah. I also got that master’s degree.

Dang, that cottontail rabbit was good to me!!

Today I am retired and those wild bunny teaching moments are long gone, but the wild bunnies are with me still. They cavort in the shrubs and lawn beside my favorite (outdoor) restaurant. They hang out in the landscaping of the Kaiser clinic where I go to appointments with my doctors. They are all over my neighborhood and this summer a baby bunny grew up, all alone, in my back yard where it provided daily entertainment for Hannah and the CoalBear.

And every evening it was bunny o’clock.

I never pull the dandelions because they are good for bees and bunnies! See my bunny munching on the dandelion and ignoring the rose bush?!

My summer bunny is gone now. It met up with another rabbit late in the summer and hit the road for better parts. I’m kind of hoping that it will return or drop off some offspring next summer, but only time will tell.

It’s always bunny o’clock in my yard. 🙂

The BioGeek Memoirs: Canada Goose

Canada geese hanging out in the median of a roadway.

I first fell in love with Canada geese not long after we moved to Colorado. My husband was a student at the University of Colorado, I was a employed in a research lab, and we were pretty darn short on cash. Our little boy loved to be outdoors and it was easy for me to save stale pieces of bread for him to feed to the geese at local ponds. We fed a lot of geese those first years in Colorado; I still feel a little guilty when I throw out old ends of bread even though I now know that peas, and not bread, are better food for geese. (Actually, the geese can be pests and it’s best to not feed them at all. But it is so much fun…) Over the years the kids and I interacted with geese on a regular basis. They were there at the swimming beach in the summer. There was a nesting pair at the local library. The goslings quickly learned to run to visitors for treats, and just as quickly the kids learned to never, ever, chase the goslings unless you wanted a close encounter with an angry mother goose.

These goose parents were raising their offspring in the green area of a business park near me. There is a small pond with a fountain there… prime goose habitat!

Canada geese (AKA Honkers in my household) are big water birds. Like, maybe 10 pounds or more; if one rushes at you it is an experience to remember! There is a resident population of Canada geese in Colorado where they raise their young and live their best goose life, but every fall huge numbers of new arrivals show up for the winter. Once the migrating flocks of geese arrive you see them everywhere: parks, fields, open spaces, and anywhere else they can find a good-looking patch of yummy plants. All day they graze on what they can pull up with their beaks and then, as dusk begins to fall and the afterglow of the setting sun fills the western sky, the flocks take to the air in V-shaped formations and fly to ponds and lakes for the night, honking all the way. At dawn next day the geese will once again take to the air as they move out to their grazing areas. My home is in the flight path of huge numbers of wintering geese that move between bodies of water on the west and fields to the east of me; the geese formations fill the sky like a scene from an old WWII movie and the honks call to me as they pass. I can’t help it; every time I hear the call of the Honkers and see the flights my heart lightens and I feel a surge of joy.

There’s a story about the winter geese that can explain to you why I feel like that. Here it comes.

One December long ago, in his last year of high school, one of my sons became seriously ill. We rushed him to an emergency room around midnight where he was diagnosed with pneumonia and started on antibiotics; failing to improve, he was transferred to a Kaiser hospital near dawn that morning. In stunned disbelief, we sat there as the staff at the new hospital explained to us that our son was seriously ill; he was septicemic, entering organ failure, and they were starting another antibiotic to try to stop the infection. He continued to decline throughout the day and that evening a third antibiotic was started. The CDC was called as the bacterium was antibiotic resistant and a potential superbug. We asked if he would recover. The doctor carefully told us that he was young; he still had a chance if he made it through the night.

During the night he began vomiting blood and the antibiotics were stopped.

Dawn the next morning arrived as I was standing in his room, looking out the window, watching the huge flocks of geese travel across the city of Denver on their way to their grazing areas. So many geese; they filled the sky. Proof of life on a morning when I was facing down the possibility of death.

Behind me I heard my son get up, unplug his IV pole from the wall, and turned in amazement to watch him wheel away with it towards the bathroom. Under his own power. He had made it through the night and clearly the tide had turned.

To this day, each time a low flying flock of geese passes over my house, my heart fills with joy. At dawn on cold mornings, going into the building for work, I would stop in the parking lot and let the rush of launching flocks pass over me, breathing in deep the start of a good day. I feel unbelievably lucky each time a flock paces along the freeway beside me, and the best, most wonderful moment ever was that time a windfall of landing geese came down around my car as I drove to Starbucks.

The Honkers and me. We have a contract between us.

Proof of life.

This goose was standing watch over its mate and the nest located in shrubbery just out of the shot to the left. That man in the background is my son.

Postscripts: I wasn’t sure if I should mention this, but the goose population has grown so large that some are being harvested to feed the hungry in the Denver area. You can learn more about it here.

Introducing the BioGeek Memoirs

How many magical moments can one person have with another species? Only a few, right?

I had a baby Cottontail rabbit in my yard all summer. How magical is that?

I mean, there was that time you fed a cute chipmunk some chips at a rest stop, or the day you encountered an owl in the limbs of a tree right over your head. The squirrels that frolicked through the branches and around the trunk of that huge maple as you walked out of your doctor’s office after getting some good news. The squad of squid that left you trapped on an offshore rock in La Jolla when they positioned themselves between you and the beach, flashing rainbow color changes in unison. The time when a whole herd of deer ghosted out from the early morning mist and silently moved past the deck of your rental cabin while you were out there drinking coffee, wrapped in a blanket, waiting for your students to wake up. The day a fox trotted down the sidewalk in front of you while you were loading the car for work and vanished into the falling snow, leaving only its footprints behind. The flight of geese that swirled around your car and landed, feet extended and wings furiously back-flapping, unexpectantly dropping from the sky while you slammed on your brakes, stunned by the joy of the moment. The day a huge beaver swam across the pond while you and your children silently watched from the bank in the shadow of some shrubs, amazed by the size.

All that stuff didn’t happen to you?

Oh, yeah. Those are my memories.

A Painted Lady butterfly on a butterfly bush in my garden.

I have had a lifelong love affair with nature. I started young with bug collections and jars full of creatures that I dug up from the sands during family beach outings. As I got older I branched out and collected every pet my mother would let me keep and looked at things from the garden with my little Christmas microscope. I learned about cells, genes and DNA in college, and then became a biomedical researcher in an immunology lab. I moved on after a few years to become a biology teacher and took every opportunity that came my way to continue my interactions with wildlife and nature. Workshops in the mountains, trips to the desert, classes with wildlife specialists, and days in museum workshops. It has all been great; a life in biology, rich with meaning and wonderment.

I loved these coneflowers in my backyard so much I use this photo for my phone screen.

But the best, the very best, have been the magical, serendipitous moments that have come to me on my own, interlaced with memories and fraught with personal meaning.

Welcome to The BioGeek Memoirs.

Hopefully I will be posting every Friday.

I have a lot of memories.

Surviving the Stay-At-Home Order

So, here we are.

I don’t know how everyone else is doing, but here in my state we were just ordered to stay at home for another 2 weeks. At first they asked us nicely to socially isolate as much as possible; now the gloves are off as things are getting more serious. Many other nations have been dealing with lockdown situations for longer than we have, and for some of you this situation may be coming. Times are really getting tough: an invisible enemy, stress, grief, loss, and economic uncertainty. And now you need to stay home for who knows how long…

Well, as it turns out I have some experience with staying home in self-isolation. I’ve been social distancing for months now; it started last summer when I switched to “night shift” to avoid sunlight, and then I doubled down when the flu season started. Hey, sunlight activates my scleroderma, and I was blue-faced and panting for air, so catching the flu was a really terrifying thought. Rats! I contracted the flu anyway, and just as I recovered I became aware of this looming new coronavirus… I was motivated to self-isolate, which may be or not be the case for you, but I do have some insights and strategies to pass on to anyone who wants them.

Okay, I just want to acknowledge that this is really, really tough. I absolutely understand that my situation, under no circumstances, should be confused with the stress of a pandemic and the coinciding economic repercussions. Still, in case any of this helps, here it is.

Make lists. Lots and lots of lists! It helps so much to bring some internal structure and purpose to your days. I make lists of things to do each day, and more lists of long-term projects that I think I might like to tackle. Make lists of blog post ideas. Add new things that you think of to your lists, and reorganize them as needed. Keep yourself going, and make plans for the days to come. Really, it helps!
One of the projects that I put on the long-term list is to knit at least one sock from each of these books. There are a lot of technically challenging socks to choose from: should keep me busy, huh!
Structure your time. When I lost my work-day structure I just didn’t know what to do with myself at first; creating a new structure helps with that. Plan a daily walk, watch a set show each night on the television, create blocks of time for specific tasks (like knitting!), do a puzzle or read each day; don’t forget to stick in yoga, meditation, or journaling if they appeal to you. Just don’t spend all day on one thing that will be finished at the end of the day. It actually is better to chunk multiple tasks over several days so you won’t hit a dead zone.
Right now I am working on this quilt every afternoon for a couple of hours.
Exercise and get sunshine. Unless of course the sunshine will make you sick. I can’t emphasize how calming and peaceful some time outside can be. Even gardening inside helps. Get some exercise! That can be one of your daily blocks of time, even if it is only your physical therapy and the number of steps daily on your Fitbit.
Spinning is exercise, right? I thought that an hour treadling my wheel was a good idea. My hip begs to differ…
Create zones in your home to keep you moving around. Right now I have transformed the dining room into a quilting area, and there is a reading zone in the living room with a weighted blanket (and my monster orchid) waiting for me. I have a desk with my computer in the room that used to be my office, and I have a knitting area all set up. The trick is to keep moving, and link your movements to your activities. Maybe staying on the couch works for you for awhile, but it is not a good long term plan, people!!
Plan and make nice meals for yourself. Oh, look! Another list! Does anyone have any yummy recipes that I can cook in a crock pot?
Record your days and your progress. Keep a journal, or maybe just a day planner. Write on the calendar. Try not to write on the walls, but if that makes you happy, go for it!! Sign up for challenges on places like Goodreads or Ravelry. Maybe create your own challenges. Do it!
Every night I record my knitting progress into my day planner. It’s kind of cheesy, but it helps me keep going. Last night I cast off the sweater and made sure it would fit me: it fits!!! Tonight I will start on the pockets.
Clean and organize stuff. In a world where we don’t have a lot of control over what is happening, it sure helps to create a nice, clean, tidy environment for yourself. Go after the cabinets and clean the closets! Organize the pantry. Arrange your books, or games, or whatever you have cluttering around in your living area. Clean up your music, photos, or the files on your computer. You’ll be so happy that you did. I cleaned the garage last week and I am still riding the wave of good feeling. Next week: the yarn stash!!
Connect with everyone you can. Talk to neighbors from your doorstep. Chat with family and friends online. My book group is working out how to meet virtually next week. Remember to text to check in with people often. Being isolated doesn’t mean that we need to be all alone.
Don’t forget to shower, people!!

So that is my list. A list! I made another list, look at me go! Take any of this that is of use to you, and absolutely ignore the items that aren’t. Feel free to chime in and add any other ideas that you have to cope with being forced into inaction during a time that screams for action.

Be safe, everyone!

The Scleroderma Chronicles: Rare Disease Day 2020

I’m an orphan. I’m a zebra. I am rare. This is a club that is hard to get into because it has really specific criteria, but it also has lots and lots of members.

What, you say? Whatever is she talking about?

I’m talking about rare diseases! A rare disease is classified as one that impacts a small percentage of the total population. Here in the United States that means fewer than 200,000 people diagnosed with the condition/disease. Perversely, there are a lot of people with rare diseases as there are almost 7,000 different rare diseases! Some of these diseases are common enough that you may be familiar with them: albinism, achondroplasia (a type of dwarfism), and autoimmune hepatitis are examples. Others are very rare. Most are genetic in origin, and half of them impact children. More than 90% of rare conditions have no drug treatment. You can learn more about rare diseases in general and search for specific conditions/diseases in the links at the end of this post.

So, what is Rare Disease Day? The purpose of this day is to raise awareness of the many, many diseases that are classified as “rare” around the world. The hope is that by shining a light on these diseases, and to put a face on the people who struggle with the many rare conditions that are out there, there will be improvements in how these people are handled in the health care system, drug companies, funding agencies, and by the public.

I joined the rare disease club 5 years ago when I was diagnosed with systemic sclerosis, a serious form of scleroderma that has no cure, can be disabling, progressive, and often fatal. These last 5 years have certainly been eye-opening for me, and I believe that my experiences are shared by many others who struggle with rare diseases. Let me list some of my epiphanies during this journey:

- People in general are dismissive of illnesses that they have never heard of before. If you are a person with a rare disease, it is almost a certainty that no one has heard of your disease. Oops. You just got written off as an attention-seeking hypochondriac by a person who hardly knows you because they never heard of your disease…
- The health care industry is designed to treat people with common diseases, and often ignores, dismisses, or denigrates patients who don’t fit the normal profile: the zebras. It is really, really hard to get a diagnosis for some rare conditions (autoimmune diseases like mine are famous for this). If you have a rare disease, you are trying to make your way through a system that wasn’t designed to identify and treat you.
- There is little incentive for drug companies to develop treatments that can only be used for a small patient population. That’s why there rarely is an effective treatment or cure. That’s also why drugs for rare diseases are called orphan drugs; another name for a rare disease is an orphan disease. Yep, I’m an orphan, but there are several drugs with orphan status in the development pipeline right now. I’m lucky that way; most orphan diseases have no drugs for treatment under development.
- To be rare means you may be too risky to treat. Once you are diagnosed with an unusual health condition it actually interferes with your medical care; because you are complicated physicians are likely to dismiss or “just monitor” symptoms that would receive immediate attention in another patient. Without more experience they can’t be sure what is “normal” for you and/or if the treatment usually used for other patients might make things worse for you. There’s another whole blog post about this on the way!
- It is really, really hard for people to wrap their heads around “chronic.” We almost all universally believe that people can get better if they just try. Attitude is everything, right? If you just took this supplement, started eating keto, got more exercise and sunshine, tried essential oils…
- Closely associated to this belief in the general public is one that assigns blame to the ill for their disease. If you are sick it must be because you ate too much red meat, or are obese, or failed to exercise enough. You should have eaten organic!! I know that people do this because they want to believe that they are safe from a similar diagnosis, but it still adds to the burden of those dealing with a life off the mainstream, caused, not by their choices, but by an inherited flaw in their genes.
- If all of this wasn’t enough, or maybe because of all of this, rare diseases are expensive and isolating. Resources are few. Support is hard to find. You feel alone. An orphan.

So, this is Rare Disease Day. Some people with rare diseases must share experiences like mine; many are far, far worse than my own. If you would like to learn more about rare diseases here are some resources:

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.

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.
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!!