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?

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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!!

Trail of Crumbs

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

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

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

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

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

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

Shawl
Look at this shawl! I’m through the first section of short row lace. This is the Waiting for Rain shawl by Sylvia Bo Bilvia.

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

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

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

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

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

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

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

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

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

Life is good.

 

Rare Disease Day

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

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

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

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

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

stuff
Fat swollen fingers with thick stiff skin are part of my condition. On this day I accidentally triggered a Raynaud’s attack that cut off the circulation to one of my fingers. 

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

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

They will feel less like an orphan if you do.

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