life with a chronic disease and a really big yarn stash
Author: Midnight Knitter
I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.
I have been struggling somewhat at the start of the year. I am between knitting projects and good books. It has been snowing endlessly (12 storms since the first of December) and after shoveling I’m too tired to knit. I want to knit a sweater, but I’m still thinking that I should continue to destash. I could spend the coming year knitting socks, but somehow this isn’t appealing at the moment. I want to do some stranded colorwork, but I really should remove some of those projects that have been sitting in the corner thinking about where they went wrong and bring them back to life…
This week, in a moment of reckless impulsiveness, I pulled a sweater that has been hibernating for over two decades out of the garage and took a good look at it. The fabric of the knitting is really cool, but somehow, I fell out of love with the colors and packed it away long ago. Now I like the colors again, but I’m clueless about what I was doing when I packed it away. There are simple but important questions like, where is the pattern, and what size was I making, and holy smokes, where exactly was I in the pattern when I stopped knitting…
I finally pulled myself together and took stock of what I had in the bin with the sweater.
I did more digging around until I located the book that the pattern came from. Oh, this is an Alice Starmore pattern published in 1995 that I bought a kit for some time after I bought the book. I put it away when I was working on my master’s degree, so this sweater has been in hibernation since at least 1998. Wow. This sweater has been in hibernation for so long it is almost fossilized. Anyway, here is the book.
Once I had the pattern again, I did some counting of stitches and used the chart to figure out where I was in the knitting. Oh my goodness, I was up at the neckline and there are 4 different steeks in this knitted wonder!! The front steek is now on standby, and I just have to worry about the sleeves and the one created to handle the neckline. The notes on the chart I was using actually are the count of the neckline decreases and I had the armhole steeks drawn onto the chart. I’m so glad that I still have the chart and the yarn key! Evidently this was size medium… the directions even began to make sense as I read them over a couple of times. I pulled myself together and knit a few rounds and it all came back to me fairly quickly; I was able to start adding tally marks to the chart to track the neckline decreases just as I had more than two decades ago.
I’m the most handsome young cat ever, right? Emphasis should be on the word young. I’m not even two years old, I’m still growing, and I need lots of attention and play opportunities. Usually, the Mother of Cats and Hannah support my needs, but not this week. For reasons that I don’t understand I have been yelled at ALL WEEK LONG!!!
Okay, I was standing on the pizza while the Mother of Cats’ back was turned. Oh, are you having trouble seeing those prints?
How about this one? Hey, this is what the Mother of Cats gets for eating in bed, right? It’s not my fault that I tracked catsup footprints all over the white linen duvet cover. See the above comment about eating in bed…
Then I was caught bunny kicking and chewing on a library book. Umm… maybe if I got more attention, I would have to resort to stuff like this. I need lots of time with the laser light, and Hannah should be chasing me more, and why don’t I get more toys? All of my toys are old and I knocked all of the ping pong balls under the sofa so I can’t play with them now, and I AM SO BORED!!! I do play with the yarn every time the Mother of Cats knits, and would you believe I get yelled for that, too. I get yelled at EVERY SINGLE DAY!!!!!
Hannah: <sigh> I keep telling the CoalBear that he needs to spend more time being cute, but does he listen to me? Nope. Not so much.
Now it is really, really cold outside and I can’t even go outside to look for the bunny. Maybe the Mother of Cats will knit soon so I can chew and chase yarn for awhile…
Sigh. Guess I will go see if I can get the tiger cat to play with me.
Okay, here I am, still pretty much in lockdown because of Covid, reading an action/adventure/post-apocalypse book with serious science connections set in a small mountain town of Colorado. The town in question, Ouray, is not one that I have been to (it’s on the other side of the state… you have to travel on a seriously challenging mountain road to get there… it is famously beautiful, however), but I have bought online yarn from an indie dyer in Ouray. Beautiful, set deep in a canyon surrounded by steep mountains, this is the setting for the book Wayward.
Do I want to tell you the whole plot of this book? No, I do not! Here it is in a nutshell: there is an outbreak of a fungal disease that kills almost everyone. It came from bats. An AI interferes in the course of events by targeting a select number of brilliant individuals who are brought to Ouray to become the seed of humanity’s recovery. There are crazy right-wing militias, evangelical leaders hunting for a flock, a self-proclaimed president, tiny nanomachines that live inside of humans, A Good Boy dog named Gumball, a rock and roll legend who provides lyrics on demand when needed, and tons of suspense/action/adventure. There are also a few moments of outrageousness that are beyond the bounds of credibility, but it is a book, right?
Still, there was that scene where two central characters are camping inside a ring of birch trees, their bark glowing in the moonlight. Right. We don’t have birch trees here in Colorado. We have aspen trees, people, not birch. I also choked on my morning latte when one of the characters described his caribou hunt in Colorado… we do have Caribou coffee here, and caribou (well, reindeer) at the Denver Zoo, but no one comes here to hunt caribou in the wild because this isn’t freaking Alaska, people. I just hate when books/authors mess stuff up, which I know is ridiculous when reading a book about a fungal pandemic, a crazy nanomachine-based AI, and other fictional craziness. It still was a pretty good book in a Stephen King, The Last of Us kind of way.
So, I was really hopeful when I started another book set in Colorado. A murder mystery thriller with lots of social and political overtones. Perfect! Here’s the cover:
See that cover art? We’re up in the mountains in kind of a small town. Maybe an old mining town, I tell myself. Clearly the mountains as I can see the ski runs on the mountain in the foreground, and the upper peaks are above treeline, so those peaks are above 12,000 feet in elevation. I settled in to read a great murder mystery set in a mountain town.
Okay, this is a good story, but for me the whole thing was a hot mess. The story is not set in the mountains, but in the foothills south of Denver. Like, exactly where I used to live, drive around and hike. The immediate cognitive dissonance was just jarring as the community of Blackwater Fall was well described in the book as about 20 miles south of Denver with a view of the Lockheed Martin complex to the north and Chatfield Reservoir down below.
I used to go hike the Carpenter Peak trail each summer in Roxborough State Park. It’s a longish day hike, and I would set out mid-morning with my backpack and a hiking pole up the trail, mentally preparing myself to face down mountain lions as I started up the trail. Yep, this is mountain lion country and there is a warning sign as you cross the creek and step foot on the trail. Make noise, try to look big, don’t run, and if attacked, fight back, says the sign. Yep. That’s why I take the hiking pole. I would finally arrive at Carpenter Peak in the early afternoon to eat my lunch among the red rocks at the summit. Golden eagles soared in the wind below me, Chatfield reservoir gleamed to the northeast below me on the plains, and to the north was the Martin Lockheed complex exactly as described in the book. To the west of the peak is a view of endless rolling hills covered with conifers that merge with the true mountains of the continental divide in the distance. The trail to the peak forks right at the end where you can decide to hike the Colorado Trail or turn right for the summit; I always wistfully thought that I would someday to the Colorado Trail, but the view from the peak was what I always settled for in these hikes.
Yeah. There was no town in sight, no falls, no church, no school for the rich and privileged kids of the community, and the rich details of the book kept crashing into reality for me.
Our main character is Anaya Rahman, a Denver police detective who works in a unit that works to ensure justice in marginalized communities. Anaya is of Syrian descent and Muslin, and she struggles with no longer wearing her hijab. She is smart, compassionate, and dedicated to her work. She is sent to Blackwater Falls to solve the horrific murder of a teenager; killed and hung onto the door of a church in an artistic display. Oh, boy. The victim is a Syrian refugee and there is lots going on in this community. Hate and bigotry is everywhere. There is a meat packing plant with Somali workers who want to unionize. There is a high-tech aerospace company creating defensive infrastructure for the southern border. There is an exclusive school filled with entitled rich (white) kids. The FBI is running some type of operation that Anaya’s boss is involved in, and did I mention the motorcycle gang of thugs connected to the far-right church? Violence, bigoty, worker’s rights, the stresses of assimilating new cultures into an existing community, corruption, and you name it, it is here.
For me this book was a hot mess. First off, why is a Denver police detective working a crime scene in Douglas County? Shouldn’t the state be involved if the local sheriff and that force can’t handle the job? Then there was the scene of the crime: everything that can be found wrong in America was crammed into this community put down in a location where I know it can’t exist. My mind keeps careening off into speculation as she describes events in the book. Anaya and her boss drive along Titan Road on their way to interview someone… I’m thinking to myself… wow, that’s the road that was built to haul out the Titan missiles built at that Lockheed Martin plant in the foothills south of Denver when it was Martin Marietta. The victim camps at Marina Point in the Chatfield State Park, and I think… no way could a teenager without a car get there, and it is a crappy campground for tent campers… The meat packing plant full of Somali workers should be located in a town up north of Denver. You know, where the actual meat packing plants are located. The town of Blackwater Falls with its history, waterway, church, and economically divided communities could be something like Louviers, Colorado if you lumped in communities in the area to the east. (Louviers is really cool. It was a company town laid out by Du Pont when dynamite was produced there…) That exclusive school is actually north of there, but you get why I was constantly falling apart while reading the book. She actually called Denver a COW TOWN!!! (Okay, there was a cattle drive down some streets of Denver this month as part of the National Western Stock Show, and there was that steer that had high tea at the Brown Palace in Denver, but still… it like it’s okay for you to call your little brother names, but if someone else does… violence!!)
Cognitive dissonance overload. Maybe a little outrage, too.
Did I mention that I used to teach Somali and Syrian refugee students and I was pretty upset at moments for what those characters in the book were putting up with? I loved those students, and I hated the bigotry that was being portrayed in the book. It seemed so extreme and overblown.
The book really was okay, but the cognitive dissonance and distress about the extreme depictions of, well, corruption, violence, and bigoted views just did me in.
Inaya solves the crime and gets her man, but there are some loose strings hanging that I’m presuming will be picked up in later books in this series.
I read a lot of books in 2022: Goodreads says that I read 43. I had planned on completing 50 books, but there was a period in the winter when my brain fog was too bad to read. Not nice, scleroderma, not nice! Anyway, I am back up and reading at a steady clip again, and I’ve been mulling over what were the best books of 2022 for me. You know, the books that you enthusiastically give a 5 star rating to and then you head off to Amazon to see what else this author has written. Anyway, after thinking it over, here are the books that I liked the best:
I just loved, loved, loved these books. I think that I posted about some of them during the year:
I’ve noticed that there are some threads of commonality between these books. Animals as integral characters in the story, people connected over space and time with each other, learning one’s worth and being true to yourself, being brave in the face of adversity, friendship and love, and finally, the power of science. Altogether, a pretty good year of reading.
I literally am unable to pick my personal best book of the year from these favorites, but I have to admit that the one that I thought about the most (so much that I wrote an entire post about it) would be Lessons in Chemistry. I seriously liked Remarkably Bright Creatures for the entertainment value, and I still think about the things that I learned in The Song of the Cell.
It’s my favorite day of the week. I get to go out first thing in the morning with the Orange Monster to check out things on the catio. We see birds, and squirrels and lots of fun things while we are out there. We also get our paws cold, but that’s okay, because if you want to play with the Orange Monster, you have to be willing to deal with little stuff like that!
You won’t believe what we saw today…
The backyard bunny was out in the garden! I mean, the bunny was RIGHT THERE at the side of the catio where the Orange Monster and I hang out in the mornings. The Mother of Cats has been feeding the bunny acorn squash (I know, right?! Why would she do something like that… but the bunny does eat it… thank heavens she isn’t giving it our TUNA!)
Personally, I think that acorn squash flavored bunny would be a little weird, but I was certainly willing to try it out. Nope. Darn chicken wire… there needs to be a FREE MATEO protest, right? Can you hear my big cat sigh? The bunny finally left and the Mother of Cats put some more ACORN SQUASH out for it.
I can’t believe that this has happened; I had just gotten used to writing 2022 and it is already over. I’ve been reflecting on the year and decided to talk about the yarn, the books, and the roses in separate posts. This one, of course, is about the knitting that went on last year.
First, the goals. I wanted to learn how to double knit: did it. I wanted to knit something using the Cocoknits method: did that too. I wanted to get at least 100 skeins of yarn out of the stash: absolutely did that too. Seriously, it was a pretty good year.
I knitted 6 sweaters. That’s a lot for me.
The top-down sweaters of 2022: these are Goldenfern, Emma, Salty Air Tee, Lace & Fade Boxy, Kevat, and Cushman. There was a lot of grey knitting going on last year so I’ve started out knitting a Simple Thing scarf thingy to wear with the neutral sweaters to give some color. I plan to make some wristers too, and I want to say that I am getting absolutely excellent knitting support from the CoalBear while I’m doing this.
Won’t those colors look nice on the grey sweaters?
Let’s see, what else did I knit… glances at Xcel spreadsheet… this year? I knit a bee. There was a pair of baby booties. I knit a lot of hats (33), even more PICC line covers (52) and 6 pairs of socks. I knit that cat paw sample of double knitting. I also knit one shawl that was a MKAL that sent Hannah on an adventure around the world chasing a worm that had stolen a priceless golden bag of cat treats from a museum in Cairo. Altogether, it was quite the year!
That bee is now hanging in my indoor orchid garden. The hats and PICC line covers all went to the Kaiser infusion centers in the Denver Metro area though an organization called Frayed Knots, and there is Hannah home from her adventures on Sharon Air.
After watching lots of YouTube videos and downloading a chart I found online I created the double-knit sample of… of course it is a cat paw!! I also got those baby booties done for the next-door neighbor who had a new arrival last April right before my surgery in May.
So that’s it. Whew. You didn’t want to see the socks, did you? I mean, they are all the same picture of the same pattern on the same feet knitting in different colors of blue and grey. I was pretty boring this year, so I feel that I should spare you those photos.
Here’s a picture of Hannah instead, because she is the cutest girl ever and that’s that!
I did mention that I got a lot of yarn out of the stash, right? Almost 120 skeins of yarn were culled from the stash and used up in knitted projects or donated to other knitters through Frayed Knots. Yay!
Wow. It has been some time since I last posted. Ironically, the last post was about the Mother of Cats being broken. I felt really good, and I was casting on a plethora of projects and was all over the place with my knitting, reading, projects, you name it. Hannah was complaining in that post that I was broken, and that I wasn’t devoting myself to making her a blanket.
Then scleroderma lowered the boom on me. I went into a flare of epic proportions. I hurt all over, I struggled to do just simple tasks, I started sleeping 10-12 hours a day, and I had to go back onto daytime oxygen. I kept heat packs on my sore joints, but I really needed a total body heat pack to cope with what was going on: every single tendon in my body was under attack!! I couldn’t regulate my body temperature and took multiple naps a day because I was too cold to stay awake. I developed chest pain. My brain fog became so bad I wasn’t safe to drive anymore… Yep. Broken.
Okay, I also accidently drank some Miracle Gro fertilizer that I had stored in a Snapple bottle. That is some serious brain fog, people!! (Yes, I did have to call poison control, I did eat burnt toast and I did drink a lot of water, and I don’t want to talk about this anymore…) Yep. Broken.
I managed to get some knitting done in spite of my ill-behaved health. I got some wristers made as Christmas presents and sewed zippered pouches for my sister and cousin.
Wristers and a zippered project pouch.
Sewing was a riot as I had to get the sewing room organized so I didn’t have to stand up very much as I cut, sewed, and pressed fabric to make the bags, but with some creative thinking and furniture arrangements I pulled it off.
I also finished my Emma sweater. I made a hat. I made some socks. I made some slippers. Everything was on big needles and used heavy weight yarn as I got too tired to knit more than a few minutes at a time.
This sweater was knit using the CocoKnits method and I learned some new methods of shaping and finishing. The yarn was chunky weight and is warm and comfy. I got it done early in the flare and it was just perfect for the days to come. The yarn that was left over was used to make a hat and a pair of slippers.
I did read some nice books, but mostly I slept and waited this miserable thing out. In the weeks while I was mostly bedbound my orchids started to grew stems for future blossoms, the first snows arrived, and my son moved in with his cats.
This is handsome Jonesy. Hannah does not like Jonesy, so there is now a chicken wire barricade at the top of the stairs to keep the two groups of cats separated. My son also has a long-haired tuxedo cat who just doesn’t care about my cats. Hannah, however, has a complete meltdown if Jonesy comes near her, so… barricade.
Mateo: I love Jonesy and I go through the barricade every day to rough house with my new best bud while Hannah hangs out with the Mother of Cats. Jonesy is the wild playmate of my dreams!
So, I think that I am out of the flare now as the multiple naps a day have stopped, and my appetite is back. Yesterday we made lasagna for Christmas and here is the present that I got from my son:
Can you see my blue lips? The bad news is that the Blue-Lipped Zebra is back in full force. I finally emailed my cardiologist to let him know that I am once again panting for air and feeling light-headed from doing simple tasks like… lifting a pan out of the cupboard or grating cheese. Ugh. I’m pretty sure that I am heading back into the cath lab for another look at my pulmonary pressures, but right now I am glad to be back on my feet and out of the flare. My son is still here (he works from home, so he just moved his operation over to my house) and things are going well in the combined household.
Hannah: as long as Jonesy stays on his side of the barricade!! Also, maybe the Mother of Cats will now settle down and get my new blanket done!!
I’ve been really busy supervising the Mother of Cats for the last couple of weeks as she has been knitting a multitude of projects with not even a little bit of discipline. I mean, she is all over the place and I never know what she is going to pull out of her knitting bag next. Let me show you what I’m talking about…
First, she started knitting all of these little hexagon units that will get turned into a blanket someday. Like, maybe when I’m too old to make the jump to the top of the bookshelf anymore she will get this done. She stopped after knitting the four units in the picture and then started knitting all of these…
Yep. PICC line cover after PICC line cover started to happen as she kept pulling out new colors of yarn from the stash. I thought that she was settled down and would stay with them for some time, but no, you would be wrong if you thought that! Did she go back to the hexagon units for the blanket? Nope.
She found some nice wildly dyed zebra yarn in the stash and started knitting some socks and then switched over to wristers because she was cold that afternoon. Do you see what I am dealing with here? NO DISCIPLICE AT ALL!!!
I gave up and took a nap after that. When I woke up that evening, I discovered that she had gone back into the stash to find some charcoal grey yarn that she wanted to make into a sweater. WHAT IS WRONG WITH THIS MOTHER OF CATS!! I am concerned that this model might be broken, but I have put so much work into training her just right I hate to quit and start over with another one…
She evidently had seen the weather report and dug out this book to use in making the new sweater. The yarn and needles are really big, so she is making fast progress, but seriously, what about the blanket that we started a few weeks ago? I could use a new blanket more than she needs a new sweater!
She finished up the wristers last night and seems to be devoted to finishing the sweater. Sigh. What about the blanket? I kind of give up, but she is pretty good at keeping Mateo and me supplied with kitty cookies, so I guess I’d better keep her.
But I am a little concerned that she might need a little tune up to help her with her focus issues. I do kind of want that blanket, you know. Who knows what she will decide to knit the next time she visits the stash?
I’m learning the Coco Knits method of knitting by following along with the book and knitting an Emma sweater, version B with bulky yarn and long sleeves. I have the colored stitch markers to go with the worksheet and everything! I was a little intimidated, but now that I’m below the yoke I am so impressed with what is appearing in the knitted object. I’m going to get this one done fast!
That sock yarn is from a trunk show at my local yarn store and I just had to knit it right now!!! I’m sure you understand.
I think that I’m going to get that blanket done next, but there are so many PICC line covers to get done before the end of the year…
There was more response than I expected from my last post about my efforts to obtain a better understanding about my chronic conditions, the new drugs I was taking, and how to lower my inflammation. I offered in that post to share the links that I used to figure out what foods impact the levels of cytokines that are important in my systemic sclerosis. I’ve gotten feedback/requests for the spreadsheet with my links that I used in my adventures at PubMed.
I’ve been thinking about this for a couple of days, and I think that the most useful thing to do would be to share my process as I hunted down information about cytokines involved in my systemic sclerosis (SSc), and the cytokines that I needed to pay attention to in my diet.
I started out asking: What are the cytokines involved in systemic sclerosis? I did searches using terms like cytokines and systemic sclerosis. Here are some of the links to papers that I found.
I kept a list of the cytokines that were being measured in these studies and I finally began to get a sense of the four big players that were being measured and considered as targets for therapy: Tumor Necrosis Factor alpha (TNFα), Interferon gamma (IFN-γ), Interleukin-6 (IL-6), and Interleukin-1beta (IL-1β). You can follow the same process to research any inflammatory disease that you are interested in; you may get different results. (For example, C-Reactive Protein, called CRP for short, features in many inflammatory conditions. For little SSc me, not so much… my levels are normal.) Anyway, once I had the cytokines of interest, I did searches on all 4 of them. Here’s my info on TNF-α.
TNF-α is also a potent inflammatory mediator and apoptosis inducer
I did the same for the other three cytokines and it turns out that for me, it is best to reduce all of them in my blood. At this point I made a little chart with the 4 cytokines at the top and began to do searches on different foods that I thought were anti-inflammatory.
Question: Which foods/supplements will decrease these cytokines levels
Now the searching gets easy. I just typed in the questions in the search bar like, “Does capsaicin reduce TNFα” or maybe “Does capsaicin reduce cytokines” and the answer would quickly pop up with some resources. Warning: the search engine will give you the pertinent text and then you are on your own as you search through these papers! If you just go with the fast answers, you will take some risks… I told my sister that tomatoes were bad because I didn’t read the whole text, and I’m not sure if she has forgiven me yet…
Anyway, here are some papers about the foods/supplements above:
If I found a source that said one of the cytokines was reduced by one of my targeted foods, I just put an “X” in that box and moved on. I was no longer recording all of the links in my excitement, and as I found info it sometimes confirmed previous finds, but not always. If I got contradictory information, I was forced to read whole papers. Ugh. Also, you might want to try a different search engine; I used Chrome on my phone and Explorer on the computer, which is another reason for incomplete links on the computer. For the three foods in the table above it ended looking like this.
Question: Which foods/supplements will decrease these cytokines levels
I hope this unpacks the process that I used and helps with any searches that you decide to do that are specific to your own needs/interests.
I’m reading a really wonderful book right now that is really speaking to me on so many levels.
This man is a BioGeek of the first order! He interweaves his experiences, patients, memories, and the history of cells together in a way that makes me green with envy. He unpacks the history of our understanding of cells by bringing those scientists to life in a way that makes me care about them; if only I could write that well. He is the teacher that I wish I had been as he reveals to us how cells work together to create complex human systems, and then ties all of that to the treatment of disease. I’m still in the first parts of the book, but I have already filled my kindle with highlights and notes.
This book was published at the exact right moment when I needed it. I have totally gone down the rabbit hole at PubMed over the last two weeks as I have read paper after paper while chasing down the major players in my chronic conditions (why am I sick, and what exactly are these new meds doing…) and how they link to inflammation. Why would anyone do something like this?
Well, it all comes down to this. I’m on high-risk drugs with some serious side effectss, and I want to make informed decisions about whether I continue taking them. I also had a run-in with elderberry juice, and was rescued by green chile; as a BioGeek I was sucked down the curiosity rabbit hole after that whole adventure. What? That doesn’t happen to you? Listen, it has been so bad I haven’t even been knitting!!!
These are the two drugs that I’m trying to understand. In his book Siddhartha Mukherjee argues that our understanding of cells, and how they work, has transformed medicine into the modern miracle that I am currently benefiting from. Drugs that directly interact with the molecular machinery of cells, the signals between them and the biochemical pathways that cells use to function, are the first of the major transformative directions modern medicine is taking in the treatment of so many pathologies such as cancer, diabetes, neurological, and autoimmune diseases such as mine.
Systemic sclerosis is really darn complicated, as it turns out, and the sequence of events that have been happening in my body are so convoluted it’s hard to track them all. It started in the cells lining my blood vessels. As those cells got injured, they sent out signals that activated parts of my immune system. Signals from the immune cells caused other cells to transform and they began to produce scar tissue… scleroderma means “hard skin”, the hallmark of my condition. Whew. Here’s a condensed version of all that if you want to torture yourself and/or fall asleep.
Let’s go back to my meds. Ambrisentan blocks a molecule that is involved in making blood vessels constrict and raises blood pressure when it is active. That molecule, endothelin, is getting turned off by the drug, and there is evidence that this will improve my exercise-induced pulmonary hypertension and will also keep it from progressing; it plays nice with my other pulmonary hypertension drug which shuts down an enzyme pathway involved in blood pressure. Ofev is my new (fairy dust) drug, and it disables some of the essential enzymes in the cells of my lungs that are involved in creating scar tissue. Interstitial lung disease is currently the leading cause of death for systemic sclerosis patients; mine is being treated by side railing the process in the cells that are essential players in the pathology.
Yay! Molecular trickery at the cellular level saves the day! I will be staying on these meds as long as I can.
Dancing to the tune of the song of immune system cells are cytokines, the messenger molecules that travel between immune system cells and other cells that they interact with. The dance is complex, with all the different messengers traveling through the blood to target cells in the body, latching on and causing the cells to take actions. Some cytokines increase inflammation, and other will shut it down. Your immune system can get dialed up or shut down, depending on what the messages are. In my travels through research papers at PubMed I focused first on what cytokines were involved in systemic sclerosis, and then I hunted for papers that had measured the levels of these cytokines when people ate different foods.
Foods that you consume can make a big difference, evidently. Elderberry made me much worse (I cried in two different doctor’s offices), and green chile saved the day. I was done doing google searches for “anti-inflammatory foods” and was going after hard data.
.What did you expect? I’m a BioGeek. OF COURSE I made a spreadsheet with the data!
Tumor Necrosis Factor alpha (TNFα) is a big driver in the whole systemic sclerosis story along with Interferon gamma (IFN-γ). They cause an increase in two more cytokines that promote inflammation, Interleukin-6 (IL-6) and Interleukin-1 beta (IL-1β). All four of these bad boys will make my inflammation worse and (probably… I’m guessing here) encourage my conditions to progress. A lot of these foods/supplements will lower the levels of these cytokines, which explains why I feel better when I eat them. ELDERBERRY increases three of these cytokines which is why I felt like death warmed over while drinking it. Google said it was anti-inflammatory… can you see why I switched to research papers and cytokines? Green chile stew has tomatoes and green chile in it (and some yummy pork and garlic!); no wonder it turned things around. I will try to eat as many of the “good” foods as I can, but I’m going to focus on ones that really shut down TNFα and IL-6. I’m ignoring the IL-10 and CRP info because it wasn’t really as well supported as the others, and I know that my CRP (C-Reactive Protein) levels are normal.
My lunch smoothie: tart cherries, raspberries, banana, spinach, yogurt, chia seed (gag) and cranberry juice. For dinner I’m having a green chile cheesy corn pudding thing that tastes pretty darn good.
Wow. Did you read all of that stuff above? You deserve a prize for perseverance.
Here’s your prize. It’s like a “Where’s Waldo” picture, but this one is Where’s Hannah!
So, there is all is. Inside my systemic sclerosis, pulmonary hypertension, interstitial lung disease self, there are all these dancing cytokines, following the song of cells. Scientists who were captured by all of this and who were entranced by the Song of the Cell have developed the drugs that are treating the two life-threatening complications of systemic sclerosis that have come my way. Inside me, the promise of the song goes on.
Time to get back to my book.
Okay, I made a whole other spreadsheet with links to all of the research papers that I used to get some understanding about these cytokines, and which were important in my disease. You don’t want to see all of that, right? If you do, say so in a comment and I’ll send some links your way!
Clinical trials are currently underway to see if an IL-6 inhibitor will be an effective treatment for systemic sclerosis.
I’m a lucky, lucky girl. I have a degree in molecular biology, used to work in an immunology lab that focused on IL-1, was involved in a scleroderma research project, and finished up my lab days on a project looking at the impact of capsaicin on rheumatoid arthritis. I can almost understand what I’m reading on PubMed. Almost.