Scleroderma – Page 2 – Yarn, Books & Roses

The BioGeek Summer Reading List: Polio

Hannah hanging out with the summer books.

It’s been a kind of slow summer because… tendonitis… but I am getting a lot of reading done. I had moved some books into the craft room with the intention of reading them *someday soon*, and then just like that, this became the summer of nonfiction, disease book reading. Hey, I’m a BioGeek, and these books are actually pretty interesting. I had some idea of organizing the books into an order that made sense, but the topics kept overlapping so much I am just going to dive in and start talking about what I’ve been reading about and how it connects to me. Should I talk about the books from my days in the classroom? The book that made me start hoarding essentials in case of a pandemic? The book that made me aware of ebola? Hmmm… Let’s start out with the one that has a lot of personal connections to me and my family…

It’s August 14th, 1945. My mom had just arrived in New York City from Argentina, returning to the United States to visit her sister, a member of the Women’s Army Corps in Washington, D.C. I’m guessing that NYC was in an uproar that day, as it was the exact date of the end of World War Two here in the US, being Victory over Japan Day. For my mother, however, it was also the start of her involvement in another type of war.

Halfway across the nation, an epidemic of polio had broken out in the state of Illinois. There was a national call for nurses, and the American Red Cross contacted my mom, asking her if she could go. Here is the chart showing the dates of newly diagnosed cases in city of Rockford and Winnebago County, Illinois that year.

It was a big outbreak, and mom was one of many, many nurses and other health professionals who answered the call. Just like that, polio became part of the story of my family. My mother met my father when she was sent by the Red Cross to another potential polio outbreak in Albuquerque, New Mexico; he was a patient recovering from his service in North Africa when she met him there. The polio outbreak didn’t amount to much, but the romance did. 🙂 One of my first memories was getting a polio vaccine. I remember collecting dimes in a cardboard folder as a participant in the March of Dimes. I once was smuggled into the hospital by my mom, clutching an ornry yellow cat named Henry, to show him off to a woman in an iron lung; she had been in that iron lung for years and my mom had been sharing tales of Henry’s misadventures with her. Some of my classmates had had polio, and I knew people who wore leg braces. Much of my childhood was colored by polio. In my mind, polio was a terrifying, ever present disease that had gripped the USA.

I read Polio: An American Story a few weeks ago, thinking that it would enrich my understandings of the polio time that I had lived through. Boy, did it ever! There was so much that I didn’t understand about polio. It was an illness that emerged as outbreaks in communities with modern plumbing and higher levels of sanitation. The common understanding came to be that polio was a virus that was common in poor sanitary conditions, and most people exposed early developed immunity without significant illness. I did not see that coming! It was also not the most dangerous or significant disease in the US at that time, but it was one that felt terrifying. The president, Franklin D. Roosevelt, was a polio survivor. The fundraising campaign to find a cure for polio, a vaccine to prevent illness, was boosted by this president and the national spotlight that he brought to these efforts. A private organization, the National Foundation for Infantile Paralysis, provided for the care and rehab of polios and funded the development of the polio vaccines. The organization later became known as the March of Dimes: the very entity that I once collected dimes for. The vaccine trials used children, 2 million of them, as guinea pigs (!), and there was significant conflict between the two major researchers who used different approaches: Jonas Salk and Albert Sabin, and the battle became political. As vaccine production ramped up, lessons were learned about product control. In many ways, the national drive that existed during WWII was continued in the drive to conquer polio. The first vaccine, developed by Salk, was announced in March of 1953 to national celebration.

This book was really engaging, and I leaned so much. Imagine a private organization that takes over to provide for your care when you are diagnosed with a disabling disease! Who knew that the battle of the vaccines was so intense, and the process to verify efficacy so convoluted. Some of this applies to our situation today as people here in the US are questioning the efficacy of vaccines and the validity of the development process. Some of that is grounded in the long, checked history of polio vaccines. That first vaccine I remember was the Salk vaccine developed from inactivated viruses. Years later a live virus version of the vaccine, the Sabin vaccine, became more widely used, but today the Salk vaccine is once again used. Here in the USA, it is easy to think that polio is a disease of the past, but it lives on in other areas in the world.

So, what was next on my BioGeek reading list? Tuberculosis!!! Stay tuned…

Notes:

It was hugely ironic that my mom arrived back in the US on the very day the war with Japan ended. Years before, while her parents were attempting to enroll her in nursing school, her sister, waiting in the car, heard the first report of the bombing of Pearl Harbor on the radio; America’s entry into WWII was immediately afterwards.
The fundraising and research drives of many organizations connected to disease prevention, treatments, and cures are modeled on the success of the polio campaign. I hear the echos over the decades now with every email from the National Scleroderma Foundation.
Oh, how is my scleroderma doing these days? Tendonitis continues, but my latest visit with my cardiologist went well: my pulmonary arterial hypertension is stable, and my heart is doing okay. The EKG isn’t completely normal, but I’ll take it, right?!! He wants to add another drug or two, but we are delaying for now as I’m already taking a LOT of medications.
Last week was the anniversary of day my doctor ordered the blood tests that led to my diagnosis of Sjogren’s Disease and Limited Systemic Sclerosis.

That was 22 tests in 14 vials of blood. Today I take 22 pills a day. Kind of ironic, right? Do I consider yarn to be part of my essential treatment? Why yes, yes I do!

The Scleroderma Chronicles: This is World Scleroderma Day!

A couple of weeks ago I went in for a routine blood draw at my local Kaiser clinic. I gave the phlebotomist my ID card and told her my name and birthdate: for some reason they like to verify these things, right? Anyway, what happened this time was… she exclaimed that didn’t look my age. (Well, yeah. That may be one of the bigger red flags for scleroderma… no wrinkles.) “It’s just my disease doing that,” I assured her. “I really am that old.”

This lady wanted to know what I had done to get rid of the wrinkles. She wanted this magic wrinkle remover too! I carefully told her about scleroderma. “I never heard of that!” she said. Still thinking that I was a lucky person, she drew my blood and I got out of there. I would be happy to have every single wrinkle that I have earned over the years, but no… I have scleroderma. The systemic form with limited skin involvement. Lucky me.

I do have wrinkles around my chin and mouth, but I was wearing a mask during the interaction with the lady at Kaiser. I had to go on oxygen this day (I have lung and heart involvement) and you can see the swollen tendons in my hand and the tight skin over my knuckles.

That’s why there is this thing called World Scleroderma Day. This is a complex autoimmune disease with illusive symptoms (brain fog… trouble swallowing…GERD…swollen fingers…trouble breathing sometimes…fingers that suddenly lose circulation and turn white or blue…) that make the disease difficult to diagnose without specialized testing and evaluation by a scleroderma specialist.

Systemic sclerosis (the form of scleroderma that I have) is thought to start with some event (still unclear) that triggers the formation of antibodies that target specific molecules the nucleus of cells. These antibodies lead to damage in blood vessels and their linings; the damaged blood vessels release chemical signals that trigger a cascade of events that impact other cells of the body. Some cells are related to inflammation. Other cells are tipped over into forming uncontrolled scar tissue (fibrosis). Here is the problem: the tissue engaged in fibrosis is all of the connective tissue. What is connective tissue, you ask? Think of all the ways a person is held together. Tissue that makes your skin stretchy. Tissue that holds your muscle fibers together. Tissue that makes up your tendons, ligaments, and the structure in your joints. Tissue that holds your intestines, heart, kidney, and lungs together. The cartilage in your ribs. All inflamed, under attack, and forming thicker and thicker layers of scar tissue. Some of this damage causes calcium deposition. Unobservable from the outside, the patient is slowly hardening inside. The most obvious symptoms is the skin thickening and then pulling tight over time.

Scleroderma, and especially systemic sclerosis, has the highest fatality rate of all rheumatic diseases. Did I mention that there is no cure? There are treatments for complications that develop like pulmonary arterial hypertension (PAH) and interstitial lung disease (ILD), but they, like the immunosuppressant drugs that many of us take, mostly stabilize and slow progression. (Dear Kaiser lady… that’s why I was getting a blood draw. The drugs that I take are risky, and my doctors need to make sure my kidneys and liver are tolerating the meds okay.)

So, what is the purpose of World Scleroderma Day? It’s to highlight this condition that impacts more people than it should even though it is rare. It’s to raise awareness of the symptoms and hopefully aid in other people getting an appropriate diagnosis. Maybe shining a spotlight on scleroderma will help in getting funding for research, treatments, and even a cure.

Sunflowers are the international symbol for scleroderma.

Here is where you can learn more about scleroderma, it’s symptoms, and treatment.

PS How was my blood work? Yay, doing okay!! Kidney function is up into normal ranges again!!! How old am I? I was born in 1951. 🙂

The Scleroderma Chronicles: Thoughts on the Night of the Strawberry Moon

There it is, the Strawberry Moon. I snapped this shot around midnight last night while the kitties chased moths on the catio.

It’s June. I can hardly believe it. June is Scleroderma Awareness Month. June is the month of thunderstorms and tornado watches. June is the month of the miller moth migration (Mateo’s favorite time of year!) June is the month that Hannah came home to live with me. June is the month, year after year, that my scleroderma begins to improve after a long, cold winter. This year June has been just great! After a very rainy May hot, sunny weather finally arrived this week and the yard began to burst into bloom. First, let me show you the weather…

Crazy weather May!! That is hail on the catio, all of that rain appeared in my pot on the deck (you can see it in the first picture… the pot was partially covered by the table above it…) in just 48 hours, and then there was an exciting outbreak of tornados just east of me. Whew! In the breaks between the storms I managed to give the lawns their first mowing of the year, and I made great progress pulling weeds out of all of my gardens. I kept thinking of a saying someone said to me recently as I worked in the yard and gardens: How do you eat an elephant? One bite at a time. How do you clear a weedy wilderness? One clump of grass at a time.

Look at how great the yard is starting to look! The grass is growing like crazy after the deep soaks, and there is lots of wildlife. I managed to get the catio all finished, and the cats and I are outside every day now enjoying the show and soaking up some sun.

Mateo is enjoying the emergence of a new, tiny baby bunny!

So, here is the crazy thing. I have been struggling big time with my symptoms. I have been unable to knit (or type for that matter) for several months now. I rely on the knitting to help me keep my hands functional, and also for mental health reasons; the loss of knitting has been hard. Even cranking the knitting machine has been too much for my healing ribs and sternum. My other joints are so bad I have spent most of my time moving a heating pad from joint to joint trying to manage the symptoms. My heart has been misbehaving again, and my lungs have been unhappy. It has been a hard winter, and I have to admit, I’ve been concerned that I may be through the tipping point and on the downward slide of my scleroderma journey.

Then June arrived.

Like magic, after every morning in the sunshine drinking my latte, after every afternoon clearing out a small section of the gardens, I have been getting slowly better. My joints are recovering. My heart has stopped having tachycardia events. My oxygen levels have improved. My hands and wrists are much better. I am writing this post. I am better. I am knitting again. I’ve started a simple summer tee in a happy pink yarn, and my wrists are letting me knit for an hour a night. I usually bristle up when people suggest that I can just get better with some sunshine and exercise, but in this case it did help.

Other fun that I’ve been enjoying on the internet is the journey of Sunny and Gizmo, two Bald Eaglets that fledged early in June from their nest by Big Bear lake in the San Bernardino mountains in California. Sisters, the two have remained with each other in various trees and have returned to the nest several times. The other fun was the adventures of Ed as he ran free in Tennessee for a week. Yay Ed!! You know that I had to cheer the zebra running wild!!

I do hope that you saw the strawberry moon. It was a happy, bright object in the sky, lighting up the back yard and the bunnies chasing each other over the lawn. The moths entertained the cats, and I sat in the dark with them on my swinging patio chair last night feeling pretty upbeat. This full moon was the last of the spring; what is coming now is the heat of summer. Usually, I kind of dread the summer heat, but last night I felt absolutely sure that I was up for the days to come. How do you eat an elephant? One bite at a time. How do you knit a sweater? One hour at a time. How do you face down the scleroderma monster? One beautiful day in the yard/catio at a time.

This is scleroderma awareness month. I went to a scleroderma conference in Denver last month, and this Saturday I will go on a fundraising walk with all of my sclero-friends. I plan to rock the teal! Bring it sclero-monster! I am ready for you!!

Friday is Hannah’s gotcha day. She is now 5 years old.

Last night I started reading the latest edition of Scientific American Magazine. The cover article is about new research that shows… wait for it… sunshine can suppress the immune system and make autoimmune diseases improve. Look at that! I’m kind of thinking that happened to me over the last few weeks. Evidently, it is a balancing act: sunshine can also make things worse. Yay! Once again, I get to use myself as an experimental animal as I figure out how much I can tolerate. 🙂

Zebra running wild!!

Hannah and the CoalBear: Shipwrecked (on Sea Glass Island)

Hi. I’m Hannah,

It has been a long time since I’ve given an update on the Mother of Cats. I know, I know… things have been going on that are hard to explain, and the Mother of Cats hasn’t been fun AT ALL lately. Let’s start with the strange things…

The house got painted! There was complete chaos around our house that went on for days! Do you see my expression when I saw one of the worker men in the window? They put plastic over all of the window, and there were all of these bumps and strange noises, and I totally was exhausted keeping the CoalBear calm through all of it. Whew. Then the painters finally went away, and the next problem became apparent…

THE CATIO WAS GONE!!!!!!

A cat tantrum is an ugly thing. Mateo is just a little cat, but he can be a little heartbreaking too when he doesn’t get his way.

She works really slowly, but the Mother of Cats has been constructing a new Catio for us. I keep urging her to work faster, but does she listen to me? She takes a day off for every day she works, and at the rate that she is making progress, it will be snowing before this gets done. The baby bunnies will be grown up and gone. The baby robins will be grandparents. I will be too old to appreciate my days out in the sun…

Mateo really, really wants to go outside to have a chat with this baby bunny…

With all of the outside work going on the Mother of Cats hasn’t been knitting very much. She did manage to get one pair of socks done, and then she made a new chicken that she took away with her on one of her trips to the doctors. Here’s the chicken.

The chicken and a couple of the babies went to the Pulmonary Function Testing lady to use with her patients. Mateo wanted to keep it for us, and I did mention that it would be kind of nice if she stuffed the little chickee with catnip, but did she listen to me? No. No, she did not! They went out to the car with her, and they stayed with the PFT lady. I sure hope that those silly patients appreciate the chickens, and if they throw the little one around that would be great! I’m pretty sure that they would like catnip, too.

So, that’s what’s been going on. NOT MUCH KNITTING! The Mother of Cats is still unable to cast on her new sweater, and while she spends time moving yarn around into interesting combinations, she hasn’t cast on her sweater. Shipwrecked. She is shipwrecked. When she isn’t fussing around outside (and we’re stuck INSIDE looking at her through a window) she is laying around with a heating pad on her knees and braces on her wrists, dreaming about prednisone, and looking at yarn to buy online. Shipwrecked. She isn’t even using her knitting machines, which at least was a little fun. This is so bad even I’m dreaming of yarn. And tuna.

This is Hannah, signing off.

Notes from the Mother of Cats:

Yep. My hands are total crap at the moment. My rheumatologist ordered some x-rays and the word “severe” appeared several times in the report. My wrists are the worst.

My knees aren’t doing very well, either, and my rheumatologist is exploring options with me. MORE DRUGS!!!! I’m a fan right now. Hannah wasn’t kidding when she said I was dreaming of prednisone. Steroids injected into my knee sound really good right now. The good news is that my lungs continue to improve, and the red flags that were raised at the time of the car wreck CT scan in December have resolved in favor of nothing serious. Yay! The changes in my lungs have disappeared, and the growing “mass” in my thyroid turned out to be a cyst. The bad news is that the follow-up CT scan in March showed that my broken ribs and sternum (fractured after all… not a shock) were struggling to heal, and I was told to lay off the knitting (and especially the knitting machine) FOR A FEW MONTHS!!!! Obviously, these medical professionals don’t understand that I need these things for my mental health. Sigh. Mateo isn’t the only one wanting to throw a tantrum lately. I don’t think that my doctors would be happy about the catio construction effort, but it is kind of an emergency!

The emotional support chicken was a huge hit at Kaiser pulmonology, and they will let me know if I need to supply them with more of the little chickees. My pulmonologist mentioned that the kids with asthma who come in for testing would love a little chickee… heal faster ribs!!! The chest pain has stopped even though I have been swinging a hammer this week, so I’m pretty sure that knitting again is right around the corner.

So… I can cast on Sea Glass, right?

<Hannah: send tuna!!>

The Scleroderma Chronicles: The Surreal Stumpy Adventure

It’s been kind of a tough month. I had a bad flare and couldn’t knit, I suffered through an annoying 30-day heart monitor test, and then there was Thanksgiving. I’ve been slowing clawing my way back from the flare over several weeks, and finally last week I started to feel pretty much like myself again. I even made several hats on my Sentro knitting machine using a power screwdriver to turn the crank for me.

This actually works better than you would think. 🙂

I pruned and fed the plants in the indoor garden. Gosh, they really look a lot nicer. Look at how nicely the lavender plants cleaned up.

The miniature roses had gotten pretty bushy, and I kept seeing some aphids on the new growth. I aggressively pruned the plants back to remove more than half of the growth, sprayed the plants well with Neem oil, and then gave them some fertilizer. They look somewhat sparse now, but the new growth is good and I’m not seeing aphids. I really needed to get the size of the plants under control anyway as they were getting close to the top of the growing space under the grow lights.

There aren’t any new rose buds yet, but I think that this was a good course of action to manage the aphids. Some of my other plants have started to put out blooms, the African violets being the stars of the month.

So, the indoor garden is looking pretty good, and the difficult month was finally coming to an end. My wrists still hurt, but I was definitely on the way back to “normalish”. I decided to head out to buy a fast-food hamburger treat for myself Tuesday evening. I love these little trips out of the house; each one is a little adventure that really perks me up.

This trip was really something, a surreal adventure that is still playing out.

I had just cleaned out my car (Stumpy) a couple of days before, and before I left on my outing, I gave him a fast little vacuum job and brought in the trash cans from the street. Gosh, Stumpy looked good! I took off to the hamburger joint where I scored my favorite burger, some onion rings, and a chocolate shake. This is a lot of fat and salt, and I was going to have it anyway!!! Did I mention that my server looked just like Dylon on The Great British Bake Off? He gave me a coupon for free ice cream if I completed an online review of the food/service. Yay! Free ice cream!! On the way back I sneaked some onion rings from the bag as I drove past the high school where I used to work. It was early evening, and there was a car parked along the street above the sports stadium and field, the driver packing things into the back of his car. Someone finishing up sport practice, I thought to myself as I went by. Still looking at the school, I remembered how much I loved working there, how much I loved the kids, how much I loved the greenhouse attached to my classroom…

I had to stop at the light at the intersection by the school, and I remember that I was very focused on the oncoming cars before I started moving with the green light because… high school intersection… crazy new drivers… must be careful…

The light changed, I slowly started out, and there was a sudden flash of light and movement to my left as I crossed the intersection. I was hit by a car that had run the red light; poor Stumpy was sent careening across the intersection and ended up dropped onto the median of the street I had been crossing, now facing directly at my old classroom and its greenhouse. Kind of ironic, right? The collusion alert system in the car immediately activated and there was a voice checking on me and calling for emergence responders. A witness arrived soon after to help, and a teenaged girl started directing traffic. The witness was a Lacrosse coach, and I wondered if he was the driver packing up his car when I passed him by the sports field. The fire department arrived with paramedics who got me out of the car (taking my car keys out of my hand and leaving them with the car), into an ambulance, and off we went to the nearest hospital with an emergency department: I had some serious chest pain going and my blood pressure was something else. “Don’t worry,” said the paramedics.” We got your food for you out of the car”. Did I mention that this was a little surreal? “Did you know that you were hit by a Humvee?” Yep. Surreal.

So, I had a great little emergency room visit. I had some testing that determined that I wasn’t having a heart attack, but I did have a couple of broken ribs. The interactions with the trauma physician were kind of hilarious as she didn’t quite know what to make of my CT results… “you have a lot of interesting structures in your lungs,” she told me. “You seem kind of dry… you need to drink more water.” Whatever. It must be the diuretic that my doctors prescribed because they are more concerned about some other things going on… like pulmonary edema… and heart failure… somehow, she focused on the wonky kidney results and didn’t notice the rest. Have I mentioned surreal? I had called my son to come get me home because I didn’t have a car or door keys any longer, and he packed me up and got me out of there at that point. Five hours after picking up my fast-food, I finally started home again with my son, a little wobbly, drugged up on pain killers, and still in possession of my hamburger. I ate a couple of the cold onion rings in the car as he drove through the night…

I’m pretty sure that my poor car Stumpy is totaled.

…and the phone rang. The police finally called. They were with Stumpy, and he was now in the parking lot of the high school where I used to work, right outside the door I used every morning next to my old classroom. We turned around and headed back to the police at the accident scene to make my statement and to get the house keys out of the car. The police officer was wonderful; she was still making her way through all the calls and witness reports, but it absolutely looked like I had been hit by a driver who illegally ran the light. She made the arrangements for the car to be towed and stayed with it for me. I ended up hugging that officer and giving her an audible book recommendation. My chocolate milkshake was in the Stumpy’s cupholder, still cold with the straw in it, and I took it back. Of course I did. As we drove away the officer was doing a search for the book I had mentioned to her. Goodbye old classroom. Goodbye Stumpy car that I loved. Thank you both for all the good times.

Surreal.

Aftermath: My wonderful insurance has stepped up and is handling everything. My neighbors are telling me not to worry about the rental car yet: they will drive me anywhere I want to go. The CT scan at the ER picked up on a couple of issues that I need to follow up on, and I already have new appointments with my doctors to do that: the atelectasis in my lungs is back, and something is going on with my thyroid. Who knows, this all might have been a blessing in disguise.

My wrists are strangely better, and I finished knitting my socks.

My hamburger, when I warmed it up and ate it the next evening, was still delicious!

I found the coupon for the free ice cream when I finally cleaned out Stumpy in the tow lot Friday. I plan to leave a great review…

Stumpy was a 2018 Subaru Forester, and I can’t praise his safety features enough.

The Scleroderma Chronicles: and today’s new words are…Paroxysmal Atrial Tachycardia

So, finally the heart results have come back. If you haven’t been keeping up with all of my latest and greatest developments in the slow-moving train wreck that is called systemic sclerosis, let me quickly catch you up.

Over the summer I started to notice that my Fitbit was alarming frequently because my heartbeat was high. My heartrate was jumping suddenly from a moderate mid-70s bpm to over 140 bpm: cue the panting! I’d have to stop whatever I was doing to lean over while I caught my breath, and then it would be over. Sometimes my chest hurt, and I was pretty sure that this was contributing to my fatigue.

All of this craziness happened while I was trying to make hats on my Sentro knitting machine.

This is what I described to my cardiologist as my adventure on the stairs: I had watered the lawn, came indoors, walked up the stairs and was then suddenly profoundly out of breath.

I do have a long history of shortness of breath, and I’ve been diagnosed with several heart and lung issues that explained my symptoms: pulmonary hypertension, cardiac fibrosis, fluid around my heart, lung disease, and… yeah. I’ve been short of breath like this for a long time and I’ve just been dealing with it as my new normal. Still, the Fitbit was new data, so I sent an email to my cardiologist, and he ordered up a 30-day heart monitor test.

Tuesday afternoon the results were in, and my cardiologist contacted me with the results. It’s kind of a good news/good news/bad news diagnosis. I have a type of supraventricular tachycardia called paroxysmal atrial tachycardia (called PAT for short). I had to do some google searches to understand those crazy terms. The commonsense translation would be: sudden onset rapid beating of my heart’s upper chamber (the atrium). In even more simple terms, my heart rhythm slips out of control suddenly and the upper chamber is beating waaay too fast. Here’s the good news: this is a pretty benign heart rhythm issue (no blood clots, heart attacks or strokes here!!), and it can be treated (probably). The bad news is… I’m stuck with it, and it is pretty unpredictable. The other bad news is that I should go on oxygen more often in the daytime as PAT episodes seem to be triggered when my oxygen levels drop. That’s why it hits when I’m folding laundry, or right after coming up the stairs, or when I rush to the door to answer the doorbell…

Hannah: Listen, the doorbell is enough to give anyone a heart attack!!!

Why wait on a new drug? Well… I’m just now recovering from a pretty bad flare that hit my tendons, wrists and knees with paroxysmal fury. Paroxysmal is a great word, don’t you think? What is really crazy, my heart symptoms improved while I was down with the flare, making me wonder if the two are somehow connected. I want to wait to start a new medication until after my rheumatologist has a chance to sort out what is happening with my poor wrists and knees. I am suspicious about calcium being involved somehow, and the treatment for PAT involves calcium channel blockers. There may be no connection if there are different pathways involved, but still… calcium is the multi-headed monster of the moment with new calcium deposits appearing on my arms and legs, osteoporosis, and a previously floated notion that I might have pseudogout (which is caused by calcium pyrophosphate crystals in joints… wrists and knees being hit the worst… and my knee x-rays showed that I had calcium deposits in the tissue around my knee…). My cardiologist is okay with a delay in treatment with the understanding that I need to contact him if things get worse.

I just love my doctors!

So, here is the lesson from this adventure. Data really changes a conversation. Having that picture of my Fitbit made a huge difference; after months of explaining that I had sudden shortness of breath things changed with the one email and attached photo. The results of the heart monitor test have now returned a data-driven diagnosis that helps me understand what is happening and makes treatment possible. It is helpful to email your doctors (instead of making phone calls…) as you have a clear record of your interaction. Google with abandon!! Rely on the advice of your doctors; they went to medical school after all, but try to be an active partner in your treatment plan.

Dang. There is another diagnosis on that growing list… no one will believe me so we should just keep this quiet. Paroxysmal Atrial Tachycardia.

In the meantime, the cats are keeping their eyes on me!

Postscript: I forgot to mention, that of the three types of supraventricular tachycardia, PAT is the one that is the least common. Figures. Once a zebra, always a zebra!!

The Scleroderma Chronicles: The 39% Imposter Syndrome

It was the third day in the Intensive Care Unit following my lung biopsy. I was sitting up in the bed, rocking all of my tubes but finally off the high flow machine, drinking a Starbucks latte and chatting with a visitor. The nurse came in the door and stopped short, taking in the scene of me, the Starbucks, and my visitor. “I don’t believe it!” she exclaimed. “They just told me all the things that are wrong with you, and I walked in here expecting to see a gravely ill person. Instead… here you are! Not what I expected!”

There I am, day three post-surgery after ditching the high flow machine for a regular oxygen line.

“Yeah, I get that all the time,” I told her. It’s the curse of chronic illnesses… you adjust and stop acting sick. Your condition is invisible, and it is too exhausting to explain to people what’s wrong when the list of diagnosed conditions is… well… exhausting. Seriously, if you say more than a couple of things it starts to sound like you’re just making things up. It doesn’t help when the diagnoses sound fake to begin with (systemic sclerosis associated interstitial lung disease… it’s called SSc-ILD for short, but still… sounds like something invented in a science fiction novel, right?). It invariably gets worse if people start to share back some rheumatic or autoimmune conditions that they know of (like fibromyalgia or Raynaud’s), and you are compelled to say… “Oh, I have that too…” See what I mean? Attention-seeking hypochondriac is sure to cross their minds. I mean, I would wonder that… It is much easier to cover up as much as you can and act normal.

I’ve been thinking about this a lot. Several patients in the support groups that I belong to have been struggling with family and friends who are unable/unwilling to accept the diagnosis. They don’t want to hear about it, they don’t want their lives to change, and there is no support. There has been heartbreak and tears, to be frank. Others in the groups have shared that their families also refuse to accept the seriousness of their condition(s) because there have been years of struggle to obtain the diagnosis, and after so many doctors have said that it’s all in your head, or, you need to control stress better, they kind of believe that. From the perspective of these family members, their scleroderma family member is just trying to milk the diagnosis for attention. To make it worse, some patients (and this is exhausting, believe me) start to list all of their symptoms as if to justify their diagnosis. It is a little desperate, and more than a little heartbreaking.

Hannah: the Mother of Cats is making a new patient in her Zoom support group an emotional support chicken!! Her family is unwilling to become involved as she grapples with the implications of her new diagnosis.

Then there is the more insidious problem: what did you do to make this happen? I have been asked that, and it usually is followed by advice about things that I can do to control my scleroderma and the resulting lung/heart complications or even how to make myself get well. The implication is, if you don’t do this (herbal treatment, sunshine, exercise, wacky stem cell injection), it is your own fault that you are sick!! It happens to a lot of us. It eats away at self-confidence, and makes me, and other patients question just how sick they really are.

I, and a lot of others in my extended scleroderma community, feel like fakes a lot of the time. Like, almost all the time!

I mentioned that to my pulmonologist last week on the phone, and he was really direct in his response: do not fall prey to imposter syndrome!!! This is really happening to you, you are dealing with it very well, but you need to remember to take care of yourself!

I had never thought of imposter syndrome in this way, but I think that his point is well made. Maybe I should have a poster made with this written on it. With some sunflowers and a tuxedo cat for interest. Every person diagnosed with a serious chronic condition needs this, because it is easy to just trick yourself into pretending that you are “better” and then the bad decisions get made. Like going off your meds. Or partying like it is 1999. Or eating all of those things that are essentially forbidden at once! There has been a rash of wailing patients in my online support groups who say things like… I went off my meds and started treating myself with natural remedies, and now [insert new symptom that has them terrified] is happening. Yep. That is imposter syndrome, hard at work. No wonder my doctor was so firm with me.

Because the point that he was making is that I am pretty ill, and I need to own it. I’m in a very small group of scleroderma patients who have the full battery of the more serious systemic sclerosis complications: pulmonary hypertension, interstitial lung disease, and diastolic dysfunction. I am being treated aggressively for those conditions, and I am doing really well, but they haven’t gone away.

I finally pulled myself together to check what the survival rates are for patients with two of my concurrent conditions (SSc-ILD-PH) and discovered that there are recent studies that looked at patients being treated with the same drugs that I am on.

This study, done in 2009 with patients on the same drug regimen as mine, showed the 3-year survival rate to be 39%. Oh, oh. Not an imposter any more.
This study, published in 2011 has a 3-year survival rate of 47%. Oh. That’s better.
A huge study done in Germany and published this year, shows that scleroderma patients with ILD-PH had the worst outcomes: the 5-year survival rate was 79%. Gosh, that is a good-looking number!

I see a trend. Do you see a trend? It looks like things are getting better and that survival rates are going up. I have to admit, when I saw that first 39% I almost panicked and stopped searching, because… I was diagnosed and started treatment for pulmonary hypertension and diastolic dysfunction exactly 3 years ago. The ILD diagnosis came in a few months later. The clock is ticking, and I am one of the 39%… talk about imposter syndrome: how can I be this functional when the majority of patients like me are already dead?? I’m a fake, an imposter!! That can’t be true, it is not true, and that new data shows what is happening: it looks like the treatment plans of today are really making a difference. My pulmonologist feels that the drug that I’m taking to control my lung disease is a game changer, and that drug was only approved for use with scleroderma patients within the last decade.

For some reason the term 39% Imposter has stuck with me. That’s me. I’m not really all that sick, because only 39% of me is pretending to be sick. Or well. Whatever works today. I’m thinking about a tee shirt with the slogan. I’m rocking the imposter persona. Maybe a shirt that says 39% Imposter and 100% Survivor…

I mailed back the heart monitor last Monday and now I’m waiting for the results. It has been a difficult three weeks because the flare just won’t go away, my wrists and knees are being bad boys, and now I have painful heart palpitations. Sigh. It is always one thing after another.

And yet, in my heart, I don’t feel sick at all.

Imposter Syndrome.

But only 39%.

Hannah and the CoalBear: Signs of Fall

Hi. I’m Hannah.

There was a huge flock of blackbirds that hung out in the backyard this week; there were so many that the CoalBear was a little worried about going outside. The days are getting colder and there are dead leaves in the catio for Mateo (AKA the CoalBear) to chase. The grasshoppers are all gone, and the squirrels are stealing food from the birdfeeder and storing it in the planters on the deck. Those squirrels are really getting out of control: one of them now barks at us from the garage roof, hanging off the rain gutter, and when that happens, we’re too scared to go outside. Bad squirrel, bad!!

Look at what’s happened to our tree!!! It is a kind of funny colored…

It was sort of a busy week. The Mother of Cats had two appointments and left us alone for hours. Then she was busy most of the rest of the week finishing up knitting the sweater that she has been working on. I love this sweater! It is fun to sleep on, and chasing the yarn is great. The Mother of Cats, however, was not very good about sharing the sweater, and then she took it off the needles, tried it on, and then packed it away on a shelf where I can’t reach it. Why does she do these things?

Today she blocked the sweater, and it is covered up with towels so I can’t lick the wool which is one of my very favorite things to do. As soon as it comes out from under the towels, however, I will have my way with it!!!!

In the meantime, the Mother of Cats is back to working on her blanket that was packed away for months and months and months. Look at how cool this blanket will be!

The Mother of Cats says that this is the next big project that is getting done.

So, that was kind of the whole week: abandoned for hours, knitting, and crazy animals that make going outside kind of scary. I’m going to go pester the Mother of Cats for some extra tuna and then I’m going to go take a nap.

Mateo: I’ll hang out with the Mother of Cats in the indoor garden while Hannah’s asleep.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

The sweater is La Prairie by Joji Locatelli. This was a challenging knit with lots of elements to juggle at the same time: a charted pattern, color changes of yarn, and lots and lots of bobbles!! I had to make modifications to the sleeves as I worked to conserve some of the yarn colors, and I still may need to rip back the cuffs and knit some more to make the sleeves longer; I’ll know the sleeve length better after blocking is done. This is absolutely an individualized knit.
All my sweaters are safely put away in plastic lock-top bins. Sorry, Hannah.
The blanket is the Nectar Blanket by Ysolda Teague. It keeps growing on me, and I’m now thinking about hunting around in lace books to look at different options for the edging. The original pattern calls for a garter stitch edging, and I keep thinking that I need some more lace… I may need more yarn, too…
The appointments were to get my pulmonary function test done, and then a follow-up appointment with the pulmonologist. I have gained back more lung volume, and he is really happy with my progress.
I took my little purse-sized emotional support chicken with me to the testing appointment. Then we went to the grocery store and Starbucks.

Hannah and the CoalBear: It’s Sweater Time Again!!

Hi. I’m Hannah.

Do you see all this yarny goodness that I’m cuddled up with?

The Mother of Cats has taken down the sweater that was in time out (I wish that Mateo was in time out… he has been annoying all day!!) and started knitting on it again. She was a little worried about coming back to a project after so many months, but it turned out to be kind of easy for her because she had made so many notes on the pattern and even made a big knitting aid to help her keep track of the yarn colors, the pattern, and the decreases on the sleeves.

All the numbers refer to the chart rows for the pattern. The dark boxes are the decrease rows, and the numbers to left side are the yarn colors. Whew! It’s enough to give me a headache!! Maybe some tuna will help…

Anyway, she spent the week knitting away on the first sleeve and got it finished in the middle of the week. Here’s what it looks like:

Pretty cool sleeve, right? The pattern goes down the outside of the sleeve, and the Mother of Cats is soooo happy that she doesn’t have to knit too many bobbles.

She’s now working on the second sleeve and really worried about running out of one of the yarn colors. She keeps weighing the ball of yarn and saying things that I think are inappropriate for kitty ears under her breath. Poor Mother of Cats. I never stress. Well, I only stress a little. Okay, I am in the closet for hours every time a stranger comes to the door, but that is just good sense, right?

The worries about the yarn are pretty bad, so I’ve been hanging out with the Mother of Cats while she knits on the second sleeve.

Anyways, the sweater is coming along well, and I think that it is one of the comfiest knits that she has made in a while. I just love taking naps on it!! Isn’t the color nice? It really makes my coat shine.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats: That sweater is La Prairie by Joji Locatelli. I’m now in a rush to get it done before the first snow of the season. Next week is going to stay warm, so maybe I’ll pull this off!

After a phone call and then a few email exchanges with my cardiologist it was decided that I needed to wear a heart monitor for the next 30 days to rule out atrial fibrillation (AFib); evidently that is a systemic sclerosis thing, and I’m high risk to develop it because of other things going on with my heart. I did not see this coming, but it absolutely matches my symptoms.

That heart monitor is just fabulous!! The whole thing is taped on, I can wear it in the shower, and there are no leads to worry about coming loose. The monitor is blue toothed to a phone that I need to carry at all times, and it is transmitting to both the company that owns the monitor and my doctor. If I have another event while wearing it, I can send a message immediately to my doctor on the phone. Isn’t this technology fabulous? Of course, nothing has happened while I’ve been wearing the monitor, but I still have 28 days to go…

Mateo: I am not annoying!!! Hannah should be the one in time out because… hold on… I’ll think of something… she hogs all the tuna!

The Scleroderma Chronicles: True North

It has been quite a week. Something happened that put me into a snit that made me think about priorities all week long. Actually, several things are happening all at once and it has taken me days to sort things out. Let’s start with the snit, okay?

These are the chicken sisters, and even though they are really cute, they are the focal point of the snit that has made me rethink my priorities.

I started making emotional support chickens to give to people who needed… well… emotional support. People who are dealing with grief, or anxiety, or an uncertain future, or struggling with medical challenges. I want to send something to people like me who are dealing with something significant and life-altering that is also mostly invisible to other people. The chicken says (Ba-BOK!!!) I see you… I am here for you… give me a hug. That is the mission. It falls under the overarching mission of Knit Out the Yarn Stash Before I Die. Hey, I have a lot of yarn, so there is a sense of urgency there for me.

Well, the day I took a chicken to my knitting group seeking to enroll others to knit chickens things kind of backfired. As in, people begged me to make them chickens. Ugh. I couldn’t say no, because all of these ladies are making/giving things for others in the same circumstances as the people I gift the chickens to. I signed on to knit 5 chickens with the understanding that each chicken would require a cash donation to Frayed Knots. I knit some chickens, posted the pictures, and it was a chicken free-for-all as people reserved the chicken that they wanted.

Here they are, the first chickens looking for a new home.

Four chickens were grabbed right away. Then the problem arrived. One of the members of the board wanted the little raspberry and grey chickens, even though they were already adopted out. The words “those chickens are gone” did not work. She absolutely had to have those chickens. It was a close thing, but I did have enough yarn left over to make the two new chickens.

When I sent her the pictures of the finished chickens and told her they were done she was greatly disappointed that I hadn’t also made a black chicken that we had mentioned while she was debating her options. (Listen, she decided on the two chickens instead of that black hen, so this was a shock!) I told her that I didn’t have the yarn to make that chicken in the stash. She told me that she would buy the yarn. I was like… NO!!! Please do not buy me any yarn!

Overarching mission: Knit Out the Yarn Stash Before I Die

Which has kind of been on my mind since my heart is kind of acting up right now. I am having sudden attacks of extreme breathlessness with chest pressure and dizziness. My oxygen levels seem to be okay, but my Fitbit has been sending me alarms when it happens. My fatigue has gotten much worse and it kind of hurts to breath sometimes.

The really crazy Fitbit shot with lots of peaks happened when I tried to knit a chemo hat on my little knitting machine. I mean, making hats while trying to control the cats is stressful enough, but the constant Fitbit alerts are just piling on at this point!

See the quality help that I’m getting while making the hats?

I seem to do much better if I wear oxygen while working with the machines, and I get fewer alerts while working on the smaller knitting machine making fingerless mitts.

So, it was a week of internal conflict. The lady who wants a black chicken is still not happy. My heart is not happy. My yarn stash is not shrinking, and somehow the joy of knitting chickens is gone when I have to make them in the exact colors that other people want. It is a chore when I don’t get to be creative, especially when I know that the chicken is going to someone who just wants a chicken, as opposed to someone who needs a chicken.

Hannah: On Friday the Mother of Cats pulled herself together, reset her priorities, and took some action!

Friday morning, I woke up, made my latte, sat outside with the cats, and decided to push the tiller over and return to a course of true north. I will remember my overarching mission statement, and I will do the things that help other people like me: people with chronic conditions that are isolating and mostly invisible to others. I will spend my time doing the things that feed my own creative spirit and my need for a sense of purpose.

I emailed my rheumatologist to ask if she would like fingerless mitts to give to other rheumatology patients. The answer came back in less than an hour: Yes, please!!!! I have my purpose again, and knitting out the yarn stash is back in business.
I emailed my cardiologist to let him know what was happening and attached the Fitbit pictures.
I took down a sweater (La Prairie) that has been languishing for months and started in on finishing the first sleeve. Gosh, it is going to be cute. Time to knit for me again!
I packed up the chickens to deliver to Frayed Knots. Those chickens are the last ones that I will knit for people who want chickens.
Saturday, I handed the chickens over to the head of Frayed Knots and asked her to please explain to the lady who desperately needs a black chicken that I’m done knitting them. The words I used were, “I’m not in the chicken knitting business, I’m in the emotional support business.”
I then sat with another member of the group and helped her knit her way through her first chicken. Suddenly, two other people wanted to learn. Yay! I am there for them!! Eventually, I am going to get some chickens into infusion centers for the patients!!

I have two little bracelets on my wrist with the Fitbit.

What was it that helped me pull things together Friday morning while drinking my morning latte? Those two little bracelets on my wrist in scleroderma teal. The little silver spoon was given to me by another patient, and it symbolizes the balancing act scleroderma people go through to manage our fatigue. We are “spoonies”. I need to remember to be ruthless about managing my own energy and resources. The teal beaded bracelet has a silver strip that says, “Remember Who the Fuck You Are“. Yes. I need to remember to not let other people run me over with their needs, because… limited resources. I need to set my own priorities with my limitations and needs in mind. I also need to remember to be brave, to face down the monsters, and to let my doctors know when new symptoms appear.

Just like that, I found my way again.

True North.