Category: science

The Year Alone: Reflections on Wonder, Luck and Hope

There is a storm on the way. These things look a little unbelievable on the weather forecaster’s computer display, but there seems to be a massive low pressure area cut off from the jet stream sliding relentlessly towards a part of the United States that will set up a big weather event. Snow. Lots of snow. Maybe feet of snow. I’m pretty stocked up but I needed a few items for my weekend cooking, so I headed to the grocery store late in the day to grab them. Oh, oh. The store was packed and the shelves were already emptying out. Shoppers radiated urgency as they raced down aisles disregarding the one-way Covid-19 traffic patterns. New shoppers were pouring in the door as I checked out and there was a whiff of panic as they passed me. This is crazy! How much snow is really coming, I wondered as I loaded my bags into the car and escaped the chaotic parking lot. I hadn’t seen anything like this since the early days of Covid-19 as the lockdown approached…

The lockdown. This week is the anniversary of the first Covid-19 death in my state, Colorado, and in just a few more days it will be the anniversary of the lockdown that started my year at home in isolation. So many people have been sick, and way too many have died. So much has been lost by so many people; this is the greatest tragedy of my lifetime. For me, however, in strict isolation, the year has rolled by with me in my own little world mostly disconnected from the greater world outside; my story is a lockdown story, not a Covid-19 story. I have been disappointed by people who kept me trapped in my home by refusing to wear masks or to comply with public health recommendations, and brought to tears by the kindness of strangers. A year is a long time; looking back now it seems like it passed in a flash even though I had some real struggles along the way.

Last night one of the local news programs had people post the last picture on their phone before the lockdown happened. Here’s mine.

My son’s kitten Jonesy in a tube attached to the cat pillar. He’s a 6 months old kitten in this shot.
Jonesy today as a handsome young adult at 18 months old.

This year of isolation has been 2/3’s of Jonesy’s life and the entirety of Hannah’s life as she was born within the first few days of lockdown in the middle of March. Looking at Hannah and Jonesy it is so obvious how long this year has been. Looking at Hannah and Jonesy it doesn’t seem all that bad, but of course this has been an extraordinarily tough year.

I sewed some cloth masks early on and wore them on the few occasions I had to leave the house: a science geek who had read way too many books about epidemiology, I suspected airborne transmission based on anecdotal reports from the New York City outbreak. That mask picture is the 2nd one on my phone after the start of the lockdown. As the debate about mask efficacy raged in online forums I wore mine anyway and ignored people who made negative comments. Almost a year later I was wearing two masks, one a highly regarded Vogmask, as I got that first dose of Pfizer vaccine.

“Do you trust the vaccine?” asked my neighbor yesterday. “Absolutely,” I replied.

I feel very, very lucky to get this Pfizer vaccine. Through chance I have a degree in molecular biology and worked for years in an immunology research lab. The molecular trickery used in this vaccine to harness my immune system to protect me from Covid-19 is the best thing that happened all year in my opinion.

I’ve been assigning lots of labels to this year spent mostly alone with my little tuxedo kitten, my books, and my bottomless pit of a yarn stash. This has been the year of astonishment. The year of disappointment. The year of living dangerously. The year of setting priorities. The year of realigning values. The year of healing. The year of decluttering. The year of absolute outrage. The year of lies and fake news. The year of masks. The year of Zoom. Finally, today, it is the year of luck and wonder.

I do want to apologize for my use of the words luck and wonder. There is no real luck in a pandemic at all. I absolutely know how awful and devastating this has been for so many people: how profoundly unlucky so many of us are that this happened to us right now in our lifetimes. The mutation and jump to humans of the coronavirus that causes Covid-19 was an event that has been anticipated and feared for a long time. It’s like waiting for an earthquake in California (The Big One) that will be massively destructive. You know it is coming, but you don’t know when or exactly where it will strike, and how devastating the damage will be. You prepare for it and hope that you are ready. How ironic, after growing up in California waiting for The Big One to hit, the crushing event of my lifetime came from a virus. In spite of the basic awfulness of all of this, I am learning to value the little crumbs of luck that came my way during my time in strict isolation while other people recovered so much of their lives and I was left behind.

I am so grateful for the luck, the random chance events, the technology, the human kindness, and the science that helped me get through this year.

My wonderful pandemic kitten was a failed adoption returned to the shelter and rejected by everyone else before I arrived to find her alone standing in a little cat tunnel. The last kitten left in the kitten room; her 6 litter mates had all found forever homes days before. Returned, rejected, all alone: the one thing that I needed. How lucky is that?

That’s little abandoned kitten Hannah on the left, 6 month old Hannah in the middle, and Hannah tonight hanging out with me while I type. Hannah was the one thing that I needed to pull me out of growing sorrow and a sense of abandonment when I realized that the the pandemic was raging unchecked in the USA as the result of a deliberate policy set by my government.

I was diagnosed with nocturnal hypoxia and received the oxygen equipment 5 days before lockdown. How lucky is that? Because of the oxygen I have been steadily improving for months.

I can order anything that I need online and have it delivered to the house in just a few minutes, hours, or days. Seriously, almost anything. A hamburger? It’s on the way!! A case of paper towels? My Instacart shopper is on it! A pair of new sheepskin slippers? Amazon makes it happen! More yarn… yes!! A plethora of indy yarn dyers will ship me my heart’s content. What would have happened if this pandemic hit in the 1990’s? How lucky that the technological infrastructure that allows all of these supportive services to exist is there for me and everyone else who needs them.

Every time I stream a movie on Netflix I feel lucky.

I was raised in the 50’s and 60’s: I can home cook from scratch and have returned to the meals of my childhood. Comfort food in a modern crockpot. How lucky is that?

I have a SMART PHONE that does everything that I can imagine doing. It banks for me. It remotely checks me into my doctor’s appointments. It tells me the route to drive to come home after a long day in a medical center. It connects me to so many other people in Facebook forums. It answers all of my questions: a couple of YouTube tutorials can handle any crisis. I can text all of my friends and family no matter what is happening outside. I feel lucky, people!!

I met with my primary care doctor via Zoom. I feel grateful for Zoom, people, even though most people in America hate its guts by now.

Knitting and reading groups have sprung up online that have connected me to wonderful, supportive, and positive friends from all over the world as we share our books, knitting, and cats. Then there is this blog. I tell you, I feel so lucky that this is all possible.

The Sharon Show, a MKAL run by Sharon from Security, a snarky cat who loves whiskey a little too much…

I can get unlimited ebooks and audibooks (well, as much as my bank account will allow…) instantly delivered to my Kindle tablet. I feel lucky.

In my year of isolation, oxygen, and limited adventures out of the house my painful joints have settled down, my kidney function has improved, and my red blood cell count has fallen into normal ranges for the first time in years. I am doing much better in many ways. Okay, I’m looking at a lot of medical testing to identify the cause of persistent chest pain, and there is still the problem of the severely damaged hip joint, but I’m in much better shape at the moment to tackle this then I was a year ago. I feel lucky.

Winter will end and the garden outside will come back to life soon. I feel lucky!!

I spend too much time wondering about things. Left alone, I have a lot of time for my imagination to run wild as I wonder about everything. I wonder if my roses all survived the dry winter. I wonder if the vet will yell at me for not getting Hannah in for her shots this year. I wonder what would have happened if this pandemic happened 20 years ago. I wonder what if it hadn’t happened at all. I wonder if I should throw away so many of my belongings as I declutter. I wonder why do I have a rare disease (systemic sclerosis) that appears to share some characteristics with Covid-19; what were the chances of that? I wonder when the Big One will come. I wonder if I should write a book. I wonder how I should combine colors of yarn in my next knitting project. I wonder what is happening with the Covid-19 long haulers. I wonder why some Covid-19 long haulers have improved after getting their Covid-19 vaccinations.

I wonder why, one week after my vaccination, I feel significantly better then I did two weeks ago.

I am actually looking forward to shoveling some snow this weekend.

In the greatest of tragedies there are still little crumbs of luck and rays of hope.

May our bad times end soon and we all have days of wonder, luck, and hope.

The Scleroderma Chronicles: Coming Full Circle

Systemic Sclerosis is a rare, chronic, progressive, and incurable autoimmune disease that is included in the family of rheumatic conditions. It is characterized by blood vessel damage and the scarring and thickening of skin due to excessive collagen production (fibrosis). The internal organs can also be damaged by inflammation and scarring: the digestive tract, heart, kidneys, and lungs.

There are two main types of systemic sclerosis: diffuse and limited.

I was diagnosed with limited systemic sclerosis 6 years ago.

Hannah: Do you like my circle?

The Circle Starts: In high school I developed a mystery illness that involved intense itching, lots of rashes, sensitivity to sunlight, and swollen digits. I was a mess. It went on for a few years and then the worse of the symptoms faded away.

First Quarter Circle: In my mid twenties I was a researcher working on a scleroderma project for the Division of Rheumatology at the University of Colorado Health Sciences Center in Denver, Colorado. The principal investigator that I worked for was interested in isolating the targets of the autoantibodies that scleroderma patients made; if we found the actual proteins that the antibodies characteristic of this autoimmune rheumatic disease were targeting we would be closer to understanding what they did, and eventually closer to understand the disease process of scleroderma. Let me be clear here: my boss, Dr. Angeline Douvas, was the brains of this little research outfit and I did most of the bench work.

One morning Angie had the hot idea that we should see what happened if we did an anti-nuclear antibody (ANA) test on the polytene chromosomes of the fruit fly Drosophila, a common lab experimental animal. We knew that the antibodies produced by the scleroderma patients were sticking to the chromosomes in the nucleus of cells… what would it look like if we checked this test on the chromosomes of fruit flies which were enormous structures that were easy to look at under the microscope?

After staining we could see that on the entire chromosome a few distinct bands were stained: only a few genes were targeted by the antibodies of the scleroderma patients. What was the function of the genes, and what were those proteins, the clear targets of the antibodies made by these scleroderma patients, doing? Something important that was linked to this disease that we call systemic sclerosis (scleroderma). How was all of that tied to the damaging fibrosis going on in these patients?

Here’s the other interesting conundrum that we kicked around: what changed in these genes/proteins that made them trigger the immune system to make antibodies? There are lots of things that can change genes and the proteins that they make. Things like radiation, chemicals, environmental triggers, viruses…

Hannah: Viruses?! The Kitten Mom and I spend all our time at home hiding from viruses!!!

Second Quarter Circle: Now in my 60s, and diagnosed as a scleroderma patient myself, I began writing letters to my congressman asking him to support the National Commission on Scleroderma and Fibrotic Diseases Act, a bill which would coordinate and organize resources to study the process that is involved in the formation of scar tissue in scleroderma and other diseases/conditions. Two summers ago I met with a representative of my congressman, Jason Crow, with other scleroderma patients to make our case. Scleroderma is special, I argued, because our antibodies are a tool that can be used to unpack the process of fibrosis. Representative Crow did support the bill.

Hannah: Now, are you ready for some really crazy stuff? Hang onto your catnip mice, this gets a little wild!!

Third Quarter Circle: It is 2020 and Covid-19 has arrived. Early on we learned that this is a serious virus that causes an extreme immune system response in some individuals that is life threatening. There is severe lung involvement, blood clots, scarred lungs, injured hearts, failing kidneys… this is no joke if you are already dealing with all of this, so I and other scleroderma patients are avoiding it like the plague and retreating to our online support groups even more than usual. We share observations and experiences in these forums, and it wasn’t very long before we started to notice that these severe Covid-19 cases seemed to be awfully similar to severe systemic sclerosis. We laughed about “Covid Toes” since dealing with blue fingers and toes is a daily struggle for us. Then the news reports about Covid-19 long-haulers started to emerge, and we all started to say to each other… wow… fatigue, brain fog, muscle/joint pains, lung and heart problems… sounds a lot like what we deal with… Then some people started to arrive in our support groups who were newly diagnosed scleroderma patients who were also Covid-19 long haulers. Now every week new people, shocked and frightened by their life-altering diagnosis of systemic sclerosis, are showing up in our forums. “Gee, there are a lot of new patients arriving,” someone wrote last week…

Unbelievable, right? I decided to hunt around online and quickly found that there were a number of reports about Covid-19 and systemic sclerosis. I discovered to my shock that people with severe Covid-19 disease do share a lot of documented clinical features with severely ill diffuse systemic sclerosis patients, and there is a connection between Covid-19 and rheumatic autoimmune diseases. When there was an article in the New York Times reporting that some Covid patients were developing autoimmune disease it caught my eye, so a little more work online found this nicely written overview by the Global Autoimmune Institute that listed specific research reports and the autoantibodies being discovered in Covid-19 patients and Covid-19 long-haulers. There in the reports are listed the same, exact autoantibodies that are the specific hallmarks of my two autoimmune diseases, systemic sclerosis and Sjogren’s Disease. 2020, shame on you. This is really, really bad, even for you.

All of a sudden it is really important to understand fibrotic diseases and how to reverse the damage caused by Covid-19.

Hannah: The Kitten Mom feels like she needs to do something about this!!

The Circle Closes: The genome sequencing service 23andMe has launched a genetic research study of systemic sclerosis patients. They are screening and accepting 1000 diagnosed patients who will donate their DNA for research into systemic sclerosis. I’m pretty sure that this effort to collect more information about the genes of systemic sclerosis patients is in part driven by the urgent need to deal with an emerging flood of new patients with fibrotic organ damage due to Covid-19 infections. Tonight I completed my application to submit my DNA to the study and to participate in all their additional data collection about my disease. Remember those few, distinct genes lit up on the fly chromosome? “Go get ’em, boys!” I muttered to myself as I clicked the submit button.

Today there were 225,558 new cases of Covid-19 in the US and 3,499 new deaths.

How many of the Covid-19 survivors will eventually be dealing with a chronic, progressive, and incurable autoimmune disease?

Wear your masks, people!!

Wednesday Afternoon Update: I’ve been accepted into the research program and they have already shipped my DNA collection kit to me. Hannah is so excited!!

Footnote: Did Angie and I find a protein using the scleroderma patients antibodies? Yep. We did.

Here’s Your Wednesday Sunshine…

Remember that huge nest that I found a couple of blocks from my house? You know, the one that was way up at the top of a tree? I posted a picture of it in my first Wednesday Sunshine post about a month ago. Last night I was woken up in the early hours of the morning by hooting. Lots of hooting! If you’ve never heard a great horned owl hoot, let me tell you, it is booming! Clearly, something was up.

The babies have left the nest!

There are now three owls that we can see on my block; two are in trees and one is hanging out on a chimney. This fledgling is in my neighbor’s tree right above the side walk. Never, ever, will I get a shot like this again.

Isn’t this the coolest thing ever?!

I’m pretty sure that we are all in for some more booming hoots tonight… I think that the largest owl in the tallest tree is one of the parents… how strange, I didn’t see any bunnies this evening… every bunny knows to hide when the great horned owl hoots in the night!

Good days in a sad time continue.

Have a good week, everyone. Be safe.

The Scleroderma Chronicles: July Report

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

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

FitBit
Look at what I bought!

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

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

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

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

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

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

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

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

Science and the Scleroderma Girl rides again.

Bring it on, August!

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

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

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

Arm
But look at what I scored today while I was out shopping!! Do you see that the pattern is teal colored butterfly wings? How more appropriate for World Scleroderma Day can you get?

Sun protection!
Do you see what is written on this arm? This is a outfit designed to provide full sun protection for people playing in the surf. It is cool, wicks moisture, and will protect me from the sun. This is exactly what I need!

Jacket
Check out the whole top. This plus a hat should set me up for morning gardening, don’t you think?

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

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

Purple flowers
The flowers in the tub on the back porch made it…

Veronica flowers
So did this Veronica. I’ve been transplanting this into several flower beds since it does so well.

Strawberries
Even the strawberry plants are producing well. Look at the berries that I had Tuesday afternoon. I decided to wait until Wed morning to pick them…

Bare strawberry plant
Unfortunately a squirrel beat me to them. This is all that was left, and I’m sure that he left this half eaten berry just to taunt me!

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

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

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

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

Have a good weekend everyone!

Science and the Scleroderma Girl: The AP Therapy Rant

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

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

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

  • Cat face.
    The Mother of Cats has an active early warning system for fanatics. There is no evidence on Earth that will change their minds…

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

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

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

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

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

Tomorrow is World Scleroderma Day.

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

Hugs to all.

Science and the Scleroderma Girl: Supplements and Me

Let’s be honest: everyone with scleroderma wants to feel better. We trade info constantly, and almost everyone has a supplement that they have found is really helpful. It’s tempting to load up on everything at Vitamin Cottage that might be helpful, but you should know me (geeky science girl here!) by now… if it doesn’t have promising research studies to back up the claims, I’m going to pass it up.

Supplements
The big three! These are the ones that I have found are most helpful for me. Yellow Boy is a terrible model… he kept head butting the bottles and this is the only shot I got.

Tumeric (and Curcumin)

So many people have advised me to try turmeric. Cruising the internet I found lots of information from sites that are devoted to nutrition, health, or supplements, but I wanted to see hard data. Yep. Pretty darn easy to find. This controlled experiment found curcumin worked better than a traditional pain med following a dental procedure. Another study looked at migraine pain and the levels of two inflammatory markers (IL-6 and C-reactive protein); the result was that curcumin and omega-3 fatty acids did reduce inflammation. Wow. That sounds pretty promising. Finally, since one article I read suggested that curcumin could help with renal disease I hunted for that…this research showed that curcumin is beneficial for kidney disease. I scored myself some curcumin and I think that it is helping, but I have to be careful with my gastritis-prone stomach lining.

Vitamin D

“Under no circumstances are you to let the sun hit your skin!” directed my dermatologist. “Are you getting enough sun?” asked my rheumatologist. “You need the vitamin D and the natural kind you make in your skin is best…” Ugh. How am I supposed to figure out stuff like this? Because I keep a symptom journal I have discovered that sunshine makes me sick: rash, fatigue, pain. Sorry rheumatologist, the dermatologist wins this round. I started taking the vitamin D supplement not long after I was diagnosed and noticed that it helped me with depression. Who knew? My internist monitors my vitamin D levels to make sure that my current supplement is enough.

Omega-3 Fatty Acids (Fish or Krill Oil)

I was really late to come to this party. Struggling with an out-of-control Sjogren’s flare last winter my ophthalmologist suggested that I take fish oil to improve my tear production. Okay, my tears are just horrible. Not only do I barely produce any tears, but what I have flash evaporates right off my eyeballs lickity-split. I didn’t even bother to check the internet before I gulped down some fish oil tablets from the grocery store. Wow!! The next morning I woke up to eyes that didn’t hurt. Then I noticed that my neuropathy was better.  Oh, yeah. There was that one study that said that omega-3 oils helped with migraines, and my ophthalmologist mentioned that he took it for tinnitus… It gets even better: it helps reduce blood clots too! Every time I end up in the ER they go on a blood clot hunt… this is probably a good supplement to add to my diet, huh. It also helps with Raynaud’s, but the effect was seen with people with primary Raynaud’s. Hey, it was a small study. I’m taking the krill oil anyway!

Tart Cherry
Another unhappy cat model… Okay, he is unhappy because he loves me and he knows that this tart cherry really did a number on me. Bad tart cherry, bad!!

Tart Cherry

Things were really bad for me last spring. I had brain fog and dizziness that left me afraid to drive. The fatigue was unreal and everything hurt. My BKB Deb advised me to try tart cherry. Off to the internet I went. Oh. It is a real thing. I found this article, and this one, and one showing memory improvement in rats. Since I was miserable and couldn’t remember what a memory was, I took tart cherry out for a spin. Woohoo! I woke up the next morning feeling *normal*. I had energy, and the brain fog was gone. In the days and weeks to come I continued to feel pretty darn good until… the kidney function tests came in. My kidney function dropped 15% in just 6 short weeks and the tart cherry fun came to a screeching halt. The notation “chronic kidney disease” was added to my chart and that was the end of that. I stopped the tart cherry, accepted feeling like road kill every morning, and my kidney function crawled back up to a higher score. Whew! Talk about dodging a bullet!

There is a lesson here. Take the supplements that your doctors suggest. Check out other supplements before you start taking them, and let your doctors know before you start. I talked over the tart cherry with my internist and rheumatologist before I started, and they caught the kidney function drop pretty quickly because I was going for bloodwork every month. Just because I ran into trouble doesn’t mean that you will. Keep a symptom/food log and monitor like crazy. If your doctors know what you’re up to they can order testing just like mine did. Saved by the blood test!

Knitting
Oh yeah. I also do a daily supplement of knitting. 🙂

If anyone has another great supplement I should check out, let me know!

Science and the Scleroderma Girl: What a Cell Wants… (AKA the Sugar Rant)

I’ve been pressured repeatedly to “give up sugar” to control my inflammation. Really, people have been pretty darn aggressive in this messaging both in person and online. To be fair, the people pressing this message must have felt they were improved when they cut back on sugar, but every time it happens I am torn between tears and frustration.

I’m sorry, but this is like telling me that I can’t put gasoline into my car anymore. The car simply can’t run on air alone, and neither can I.

Eukaryotic Cell
Cutest drawing of a cell ever!! This little guy, an idealized animal cell, needs many essential components to stay alive, including a constant supply of glucose and oxygen. That’s what a cell wants, what a cell needs… 

Okay, to be clear, we do need a component of air for energy: oxygen. I was running short of that commodity earlier in my scleroderma career and had to be placed on supplemental oxygen for about 6 months waiting for my drugs to kick in and save my ass. If you are short on oxygen, as I can attest, you are also short on energy and you can’t think very well. I was in trouble, as my pulmonologist put it, because my “engine” (my lungs) was too small for my body.

The other essential energy component is sugar, or specifically, glucose. Cells, and by extension, bodies, use an amazing system of biochemical pathways to convert biological materials to glucose, maintain a steady concentration of glucose in your blood, and then pack away the excess for storage in your muscles and liver. If blood glucose levels drop too low your body releases glucose from storage. If the stored glucose gets used up, your body begins to cannibalize other tissues. Why is glucose so important? Because it is used in the mitochondria located in body cells along with oxygen to produce the energy molecules (ATP for you geeks out there) that are used to run the whole biological show. If there is no ATP, the whole show stops. That’s why it is critical to keep people breathing and their blood pumping, but also why it is important to consume glucose.

My relationship with glucose is pretty darn complex. Too much sugar at a time isn’t a good thing: it can dehydrate and damage tissue, and high blood sugar can cause blood pressure spikes. Take home lesson for me: don’t binge on milkshakes, sugary pops, and French fries. Because I had hypertension and a family member with diabetes, I have spent years developing a diet that has a low glycemic index. I eat yellow potatoes instead of white ones, recipes with half the flour replaced with oatmeal, and little sugar. I also eat fresh fruit in my yogurt smoothies, and rice mixed with veggies. I am eating sugar every single day in my meals, and it really is essential for me to function properly; the trick is to try to consume it in a way that helps maintain good blood sugar levels. Frosting loaded cinnamon rolls… NO!! Banana and strawberry smoothie with yogurt… YES!!

So, every time someone insists that I have to “cut out sugar” I can feel my head getting ready to explode. I wonder if they understand that potatoes, bread and rice are also “sugar”. Have they given up fruits? If they are also cutting out gluten they may be actually spiking their blood sugar with rice-based alternatives. It is kind of crazy talk… It also is kind of “it’s your fault you are sick” talk. Not nice!!

Knitting
It makes me go sit in a corner somewhere to knit away the frustration…

The research is mixed on the link between sugar and inflammation. There are lots of articles on healthy eating sites that say it is bad, but I wanted to see actual controlled experiments looking at the link between sugar and inflammation. There are several ways to check for inflammation but most look for inflammatory markers in the blood and cell permeability. This controlled research study found that there was no link between excessive sugar intake and inflammation. It’s kind of a small study, though, so I went hunting for more. This study showed that sugars obtained from food were not inflammatory, but when people consumed free sugars (spooned sugar into coffee or cereal, or drank sugary fruit juice) they did increase inflammatory markers. Cool. That totally makes sense, and explains why other people are reporting that they feel better when they “cut out sugar”. My sugar canister goes months without being opened… I don’t add sugar to anything unless I’m baking. Still on the hunt for info, I found this meta-analysis of research studies that showed that high-fructose corn sugar wasn’t any worse than any other in terms of inflammatory marker increases.

Okay, I think that the rant is over. Sugar is your friend, but don’t get crazy people…

Back to the knitting!

Science and the Scleroderma Girl: The Dairy Rant

It happened again just last month; I was advised by another scleroderma patient in a most assertive and authoritative manner that I could not eat any dairy because it “was inflammatory”. She followed up with a lecture on how cow milk is not appropriate for humans, and that most people were lactose intolerant because it wasn’t good for us once we become adults. In her defense, there are numerous sources on the internet that argue that dairy is inflammatory (like this one, and this one), and many people accept this as common knowledge.

Sigh.

Cat face.
This was not a message that the Mother of Cats wanted to hear…

I get it. We are all in the grips of a chronic disease that refuses to behave itself, and we all want regain some control through our diets. I just have trouble accepting these blanket arguments without working the problem first. Hello, Science Girl! Here’s a little unpacking of the inflammatory dairy argument:

  • Inflammation: for me, the easiest way to think of this is the heat, redness, swelling and pain that is associated with trauma or irritation. It’s your body’s first level response to a possible invader; the local temperature is raised, fluid moves into tissue to allow defensive white blood cells to move around, and signals are sent out to activate other parts of the immune system. One of these signals is C-reactive protein, which can be measured in blood. Mine gets measured every month.
  • Cow milk: cow milk is inappropriate? What?! Does that mean I can’t eat chicken eggs, or even bananas for that matter?  Moving on…
  • Lactose: this is a disaccharide, a two-unit sugar made from the simple sugars glucose and galactose. In our digestive system we need to use the enzyme lactase (made in the lining of your small intestine) to break the two units of lactose apart so that the single sugar units (glucose and galactose) can be absorbed. Lactose itself is too big to be absorbed.
  • Lactose intolerance: if your body no longer produces the enzyme lactase  that lactose ends up in your large intestines where it is food for the bacteria that live there. Yep! Bacteria party time! The byproducts that they produce as they grow cause the unhappy inflammatory outcomes (gas, bloating, pain, diarrhea) that all lactose intolerant people know only too well.
  • Allergies: if you are allergic to casein, found in milks, then you need to avoid dairy as it will be an inflammatory agent for sure!

Dairy products.
Dairy that I eat… 

So, here is the take home lesson from my unpacking: if you are allergic to milk or have lactose intolerance, then consuming dairy products will make you sick… they are inflammatory. Cool. I get it. What if you are lactose intolerant though… can’t you just avoid the lactose and keep the dairy? Armed with my food log, more curiosity than is probably good for me, and a tendency to use myself as a one person experimental animal, I kept looking for safe food to eat.

I have to be frank here. My intestinal woes are so bad that I have developed a fraught relationship with the refrigerator. Seriously, I open the door, look inside, and view the contents with a jaded eye as I ask myself: what can I eat in here that won’t make me sick? I keep a food log, and anything that makes me sick more than once gets tossed. I throw out lots of food. I have also discovered that there are some foods that are the safest to fall back on when I’m struggling.

Dairy. No matter how bad things are, I can rely on yogurt and cheese, along with a few other mainstays, to get me through a rough patch and stable again.

Here’s the trick: I choose my dairy very carefully. My milk is the kind that has the lactose removed. I only eat yogurt that has live cultures in it; they already snacked on the lactose and it’s gone before I eat it!

Cheese label.
I only buy natural cheese, and as you can see it is made with almost no additives. The enzymes were used to create curds in the milk, and that cheese culture took care of the lactose for me.

I read a lot of labels these days as I shop, and slowly I have discovered products that are safe and reliable. There is a sour cream with cultures that is safe. There is a safe cottage cheese. I haven’t found safe ice cream, but I’m still on the hunt. It’s best to stick to natural products, but even that isn’t good enough.

Cheese label.
This is natural cheese that says it has no sugars. I still won’t risk it because it was not made with cultured milk.

For me, always on the hunt for food that I can eat, dairy is my fall back safe zone. It will get me through a bad time, and if I eat yogurt every day I actually seem to improve. My C-reactive protein level drops. It’s almost like dairy is anti-inflammatory…

There are now numerous studies that show that dairy is anti-inflammatory. This review of clinical evidence showed that dairy reduced inflammation in individuals without a milk allergy, and here is another presentation arguing that dairy is anti-inflammatory. Check out the references!

So I told this woman that I had discovered that I needed to eat yogurt every day or I would run into trouble. Her response? You can’t eat that type of yogurt… it has sugar!!  Sugar is inflammatory!

Sigh.

Science and the Scleroderma Girl: Get Ready for the Rants!

Yep. This has all been about me needing to vent about all the alternative medicine and false information out there that is directed at people who are seeking to manage chronic conditions, lower their cancer risk, improve their lives, boost their immune systems, or just be more healthy.

There is so much coming at me that I would be a total victim if I didn’t have a way to sort through things. It is all presented as “scientific”, backed by “studies”, and supported by numerous testimonials. Often I am pressured by other people to adopt their products, treatment plans, or dietary guidelines, sometimes to an unacceptable degree.  The message “it’s your fault that you’re sick because you won’t do what I say” is out there, and I am surely not the only person to have been targeted by this.

Knitting.
Mostly I just ignore them and knit on. What do you think about my newest Close to You shawl? This yarn is from Western Sky Knits, and the colorway is called Nova.

Here’s the advice that comes my way:

  • Stop taking your drugs. The doctors don’t know what they are doing, and the side effects are unacceptable. (Really… this happens a lot!)
  • You can get well if you:
    • Follow the AP Protocol by going to an alternative medicine doctor
    • Never eat any processed or artificial foods
    • Only use natural products and eat organic
    • Only eat alkaline foods
  • You cannot consume any:
    • Salt
    • Sugar
    • Alcohol
    • Gluten
    • Dairy
    • Processed foods
    • Transfats
    • Seeds
  • You have to supplement your diet every day with :
    • Probiotics
    • Prebiotics
    • Turmeric
    • Cinnamon
    • Fish Oil
    • Vitamin D
    • Alkaline water
    • Tart cherry
    • Natural cider vinegar
  • You can treat your symptoms with:
    • Essential oils
    • Reflexology
    • Exercise
    • High fiber foods
    • Heat
    • Cold
    • Amber beads
    • Magnetic bracelets
    • Herbal tea
    • Aloe vera
  • Your disease was caused by:
    • A chemical exposure
    • Vaccines
    • That viral illness that you had sometime in the past
    • Leaky gut

Truly, if I wasn’t feeling overwhelmed by the fatigue, brain fog and all the other things that I deal with, having this all come my way is way over the top. Ugh. It is a lot of information, some reliable, some not so reliable, and some just plain false, for me to sort through.

Get ready!! The mini-rants are just ahead as I unpack as much of this as I can for you in the days ahead.