chronic illness – Yarn, Books & Roses

Thoughts while knitting to Demon Copperhead

Okay, I don’t get out much. When I have to go to a medical appointment across town it is kind of a big deal. I have to adjust my drugs and diet for a couple of days. My oxygen bottles need to be ready to go. I need to minimize my time out of the house (brain fog becomes a big problem after about 3 hours) so I use my smart phone for everything that I can: check in, payment, and navigation to the medical center. My car, named Stumpy, handles my email along the way, tells me the route, and also gives me weather reports. I love technology!!

The last time I went to my rheumatologist’s office I didn’t get into the elevator in time before it closed its door and left. Hey, there are a lot of elevators there and they don’t all go to the floor that I needed. Behind me, I heard the voice of a man who complained loudly about how impossible modern technology is, and he advised me to push the button again and to hope for the best. I pushed the button, and this time when my elevator car arrived, I had sorted things out and managed to get in the right one on time. He joined me and continued to rant about technology, and then suddenly began to vent about “needing our country back” and assured me that it would take a long time, but that we were going to “get the country back.”

Stunned, I looked at him from across the elevator car. He was an older white man in work clothes, someone who looked like he lived in a rural area. I may have backed up a little more. All I could manage to get out was that I had a different opinion from him, and immediately his manner changed, and he became polite. Yeah, right. I saw that rage you’ve got going on under your farm hat…I got out at my stop, got my little ol’ liberal butt out of there, and didn’t look back. How did that segue from frustration with technology to MAGA extremism in a heartbeat?

The incident really hit me because I was reading (well, listening to) Demon Copperhead at the time.

Demon Copperhead (by Barbara Kingsolver) seems to be a modern rendition of David Copperfield set in rural southern Appalachia (Lee County, Virginia) that has packed into it all the horrors of vulnerable populations in one neat package. It was the kind of book that is just horrifying while completely engaging you in the story. Demon is the child of a mother who dies young and is forced to enter the foster system. In placement after placement, he is mistreated and sometimes starved as he is used for labor or a source of income by his foster parents. As I read the book, I became aware of how bad things can be in an at-risk population where the job opportunities are few and far between, resources are limited, and education substandard. These communities, insular and tightly knit, cling to each other to help out and somehow survive as they are preyed upon and abused by corporations and pharmaceutical companies.

In spite of all of this, and even though Demon is betrayed again and again by the people in whose care he is placed, he survives, comes to terms with his history and the people in his life, and shines on as the author of a comic series about his people, the Appalachians. All the events and understandings of his life, the good and bad, come to life in his comic series called RedNeck, that shines a light on the people of his community.

This book is just amazing, and it really made me learn new things and start thinking about the world around me in new ways as I knitted along listening. Towards the end of the book, Demon mulls about the differences between people who live on the land, relying on each other, and the people in cities who scramble for money since money is needed for everything. From the perspective of advanced technology and more money, city people look down on land people as unsophisticated and ignorant, when in truth people should be more important than things. Conversely, it is also easy to feel intimidated and overwhelmed in unfamiliar situations; a modern high tech city (or medical center) certainly can be that to people who don’t have weekly trash pickup, sidewalks, or, yes, elevators. Suddenly I was back in the elevator in the Kaiser building, looking at a frumpy man who was furious about technology and the loss of his country.

This is me a few years ago, deep in a flare, clinging to my beloved cat, and living my best little scleroderma life. It was at about this time that my pulmonologist referred me to palliative care.

I’ve always been a fairly reflective person, but lately I’ve had more time than usual to think about things. I know people who are consumed by money and who hunger for expensive possessions. Some of these people want expensive things as status symbols, and there really isn’t enough money to make them happy. I recently ghosted someone who thought that I envied and resented their inheritance. I no longer correspond with a family member who told me that they would have more things if they hadn’t had children. My tax preparer last year exclaimed, in a shocked tone of voice, that I hadn’t made any money at all last year!

Well, yeah. After you have been referred to palliative care you just don’t worry about money anymore; I have everything that I need, and why would I want more? My prognosis has improved since then, but the lesson remained. Demon’s thoughts about the divisions between the people of the land and people who live in cities based on economies remain with me. In a way, the division between the healthy and the chronically ill is similar. The divisions between different ethnic and religious groups. The divisions between gun owners and those of us who want gun regulation. How many of these divisions are rooted in the underlying social/economic structures glimpsed in Demon Copperhead? I guess you could say that this book was life changing. I’m knitting to a new book these days, but the reflections rooted in Demon Copperhead go on.

Yesterday Demon Copperhead won the Pulitzer Prize!!

The Saturday Update: Week 33

Here I am with a late post following an hectic, nonproductive week. Well, it was actually productive, but not in the ways that I wanted it to be. It is very hot here, very dry, and our wildfires are worse than they were last week. There is so much smoke in the air now that I’m trapped in the house from the air alerts: tonight I wore a mask when I watered the lawn and that helped. Good thing I have some masks laying around, right?

So, what is going on, you ask? I’m knitting, and cooking, and cleaning house. I bought stuff on Amazon to fix things up. That sounds good, right? Well… I’m doing the Sharon Show MKAL and I really, really want to print out the pattern. I ordered ink, but it doesn’t fit my printer. I found an old printer from my classroom in the garage, hooked it up, and tried to get it going. Nope. I dug through office drawers and my old school supplies hunting for ink cartridges and cords. I learned how to activate wireless printing. Three hours later I had cleaned parts of the office and garage while fussing with the printers and I had gotten no where. I gave up and ordered more ink for both machines. Sigh. I need a print out of the pattern to get through the next round of clues… Hey, I’m chronically ill. After all of that I couldn’t knit anyway. Nap time!!

Round 2 of the quintessential summer game.

Last night a moth got into the house and flapped its way into the tall torch floor lamp by my knitting chair. Hannah immediately went airborne, tore right up the lamp to get her moth, and the whole thing came down in slow motion with me trying to get untangled from my knitting fast enough to grab the lamp while Hannah scrambled to get out of the way. Disaster in slow motion!. It took a bad bounce off the chair and hit the floor: the glass shade and a light exploded into shards. Standing at the perimeter of the debris field Hannah and I could see the stunned moth at ground zero; undaunted by events, Hannah just tip-toed in and took her moth away. Instead of playing with the moth I collected glass and vacuumed the downstairs for the second time in one day. Hey, I’m chronically ill and that was the end of the knitting for the night. Bed time!

The pill organizer that my sister sent me to help me keep track of my meds for the week.

Today I carefully set up my pill keeper for the week making sure that Hannah was safely occupied and unlikely to get involved. I was being sooo careful with the pills. I just needed to get this new bottle of one medicine from the drawer to finish up… and I bumped the phone cord, the phone hit the pill case, and the pill case with all of the little doors open tipped over and hit the ground. I threw Hannah out of the room and carefully picked up all the pills, counted them and returned them to the little compartments with little Hannah paws flashing under the door all the while. All good, except that there was one pill missing… I searched for that pill for 2 hours as I moved furniture, books, and then vacuumed the room again. I ended up cleaning the bathroom and laundering the bedding while I was on the search, but I never found that pill. I am sure that it is not where she can easily get it, and that will have to do for now. Hey, I’m chronically ill and I didn’t get any knitting done until late this evening because… nap!!

So, with all of the disasters, cleaning, naps and everything else, I just didn’t get that much done this week. I’m staying out of the garden because of the smoke, and outdoor pictures are really poor now, too. I’m not reading this week either because the smoke affects my eyes. I do have some knitting to show off!

Knitting

I have mixed feeling about this shawl with the light interior and the darker lace, but that’s the way the stash worked out. I already have plans for another version with a darker interior and a very light lace border. This is a nice calm knit for stressful times and I may be making a few more to gift at the holidays.

I was going to be good and not show off any pictures from the Sharon Show MKAL, but it is on Facebook now and I’m going to show off some of my efforts. If you don’t want to see any of these pictures, just stop reading my blog right now! Three… two… one. For anyone who is left, I just have to say that I am having so much fun with this!! The pattern is just a riot to read and I love the snarky cat voice of Sharon. The shawl contains many little sections showing off the colors, patterns and some texture, and the names are just a riot!

This little section is called “Scratch Marks on the New Velvet Chair”.

This section which features thorn stitch is called “Secret Spy Place”. All cats have secret spy places and this stitch also evokes the very floofy tail that Sharon flaunts.

See Hannah in her Secret Spy Place in the yarn stash?

Here is Hannah napping on the finished Clue 1 of the shawl. I am so happy with all the action going on as I knit.

This is a great, fun project and I am hanging out with people on a Facebook group as we all knit. I am thrilled with the size, and as I wear a lot of grey and black in the winter this shawl is going to work out great for me. That is, if Hannah is going to let me wear it… Today is her 5th month birthday and she is kind of wanting the shawl all for herself!!

After the whole moth/kitten/lamp adventure that’s MY shawl, Hannah!

Let’s hope that the printer ink from Amazon comes in another day or so as I am at the point where I really, really need a paper pattern to work off of.

Sharon, please don’t write me a citation for being bad and showing off the shawl in progress. I did warn people, I did!!

Have a great week, everyone!!

Read a little, knit a little, and garden like your heart can’t live without it.

The Scleroderma Chronicles: Flares and Zebra Nonsense

My last flare started sometime in the depths of December and dragged on for almost two months. It’s hard to begin to describe what is happening to me as my illnesses (systemic sclerosis and Sjogren’s Syndrome) intensify and the walls of my world gradually close in as I descend into the ever-deepening abyss of escalating illness. Always unpredictable, it starts before I am even aware that I am in trouble and before I know what’s up I’m a hot mess. Even now, as I write this, I can’t recall what the first true symptoms are, but I’m pretty sure that in the middle of my usual challenges with pain, fatigue and dryness the other problem children creep in the door and take me down before I even know they are there. As the flare builds momentum new symptoms erupt daily including:

Shortness of breath – I literally start panting every time I move
Gastritis that makes my stomach burn whenever it is empty, and
Gastroparesis that makes my stomach hurt whenever I eat
Intense itching and eruptions of eczema
Hair loss
Crushing fatigue
Sleep interruption
Swollen joints that won’t bend in the morning, and
Burning muscles that are too sore to touch
Brain fog and disorientation that makes me afraid to drive and unable to read

Edema on arm. — Oh yeah. There is edema, too. Check out this arm!

Flares are a test of patience, but they always do come to an end for me. Somewhere towards the middle of February, for no reason that I can put my finger on, I slept soundly through the night. Wow. That was great, I thought. A couple of days later I realized that my energy was coming back and that my stomach didn’t hurt any more. After a week I took a shower and there wasn’t a wad of hair deposited in the drain. My thinking became clear, my driving fearless, and my muscle pain and swollen joints receded to background levels. The itching stopped, the eczema disappeared, and I stopped using my inhaler. It was over; the storm had passed.

When I mentioned to my rheumatologist last month that I was having these flares things suddenly took a left turn and my whole appointment went off the rails. She first told me that there wasn’t any treatment that was more effective than what I was already receiving. (I know that, my systemic sclerosis is pretty stable, and I am grateful. I think that it is Sjogren’s causing all the trouble, but it has to ride in the treatment back seat since it probably won’t kill me.) Then she reminded me that I always mentioned my fatigue and muscle pain, and that maybe I should be tested for sleep apnea or given antidepressants. Suddenly, instead of talking about the conditions for which I was already diagnosed, we had to talk about depression and sleep apnea. I was defensive and almost in tears. It took days to process what had happened there.

MacKenzie the cat. — The poor Mother of Cats needed extra attention for a few days…

It all boils down to two essential truths. I am a Zebra. I have been betrayed by a medical system designed to treat commonly occurring conditions when I suffered from a rare disease. I have had my symptoms dismissed, disparaged, or ignored for literally decades. For my rheumatologist, who I like and trust, to do this suddenly threw me back into a defensive, victim-like posture. I will not let this happen again.

The other essential truth is that it is insulting and counterproductive to cherry-pick out a couple of symptoms from the entire package that I call a flare, concentrate only on them, and then build a diagnostic hypothesis that addresses only those isolated symptoms. Yes, I do have muscle/joint pain, fatigue, and sleep disruption, but let’s not forget about the gastritis, itching, hair loss, edema and shortness of breath. Once I am out of the flare, my sleep is pretty good and my fatigue is much reduced. I know that my rheumatologist wants to help me, but I’m going to insist that we stick to the data and that logic and reason are employed as part of my treatment plan. Even if that plan includes a clause that says… you are currently receiving the best care available and there is nothing else we can do for you because scleroderma and Sjogren’s sucks. Well, all right then. Give it to me straight, because I can handle that, but don’t hunt for ANOTHER condition that you can medicate without better data.

Because I don’t have sleep apnea. I’ve been tested twice in the last three years. I wear a Fitbit that shows that I’m in deep sleep for 1-2 hours a night and that I’m almost motionless all night long. It is time to put that hypothesis to bed and to spend more time talking about things like this lupus-like rash that has appeared on my face…

I’ve also been checked for depression and I’m fine. Yes, I am aware that MOST chronically patients need help with depression, but that doesn’t mean ALL patients require additional drugs.

After all, I’m self-medicating every day with knitting!

I finally decided to write about this experience in my chronically ill life in case it could help someone else. Okay, I also needed to vent a little!

Should I perhaps knit a little something for my rheumatologist? It must be hard for her to treat patients every day who are dealing with painful, progressive and incurable diseases; no wonder she sometimes grasps at diagnostic straws hunting for a way to help.

But if she does it again this Zebra is ready to deal with that nonsense!

The Scleroderma Chronicles: An Autoimmune Zebra

“When you hear hoofbeats, think of horses, not zebras.” ~medical school proverb

Zebra ~medical slang for an exotic medical diagnosis

Author as 16 year old student. — 16 years old: my last year illness-free.

As a teenager I struggled with eczema and was photosensitive; I was started on steroids, told to wear long sleeves, and to stay out of the sun. Without a clear cause for my eczema/rash I told that I was high strung and unable to handle stress; if I could control my emotions I would see my symptoms disappear. Eventually I did get better, the drugs stopped, and my life went on.

In my early 20s I had my first asthma attacks. I didn’t really understand what was happening, it was always in the night, and the doctor couldn’t find anything wrong. I was told to handle stress better. Most of the time I was okay, so I just learned to deal with it.

In my early 30s my knees began to swell and become painful. There were lumps below and behind my knees. I had an ultrasound to make sure the worst lump wasn’t cancer. I was told to do special exercises and to stick to low impact. My eyes hurt and I couldn’t go outside without sunglasses. Clouds of floaters swam across my vision. You have allergies, said the doctor. My finger was too fat for my wedding ring so I resized it.

In my 40s my hands became numb and swelled. I had a lot of pain and struggled to manage routine tasks. Carpal tunnel, said the doctors: it’s a repetitive motion injury and you did this to yourself. I had the surgery on both wrists and my hands did get better, but I still struggled with swelling and numbness, even in my feet. I developed a rash on my face. Rosacea, said the doctor. My knees still hurt. I started to develop high blood pressure. Control your diet and exercise, said the doctor. My fingers became too fat to wear any of my rings. I was tested for autoimmune antibodies associated with rheumatic diseases (anti-nuclear antibodies), but the result was only mildly positive so it was dismissed as not significant.

In my 50s my knees were so bad I had to take ibuprofen every day to function at work. It hurt to breathe in the mornings, and I had several cases of bronchitis that required an inhaler and steroids to recover from. I developed pleurisy. I was also told that there was nothing wrong with my lungs, and that I needed to get better shoes. My face and jaw hurt so much I couldn’t sleep. TMJ, said the doctor. You need to handle stress better. My kidney function dropped to 35%, alarming another doctor. You damaged your kidneys taking ibuprofen, I was told, and you can’t take any more. I changed my job so I wouldn’t have to stand so much at work. My blood pressure continued to rise in spite of changes in my diet and exercise; I was placed on a beta blocker to control it. I developed Raynaud’s phenomenon; don’t worry, I was told, it is a side effect of the beta blocker. I wondered why I wasn’t getting wrinkles like my friends. The rash on my face was getting worse.

In my early 60s I noticed that my arm was getting “thick” and that I sometimes couldn’t complete a swallow; food became “stuck” mid-gulp. I complained about dry mouth. My fingers turned blue in the cold. I was hospitalized with severe gastritis. I was stalked by fatigue and my knees hurt every single day. My fingers were too fat to make a tight fist. Unable to function at work, I retired early. I developed colitis and rarely left the house. Testing showed that I didn’t have an intestinal infection, and my doctor didn’t pursue things any further.

Struggling with life and my early retirement, I grew roses, read books, knitted, and launched this blog.

One night the light went off for me. I had joint pain, kidney damage, intestinal woes, Raynaud’s, a rash on my face, and a positive ANA. I walked in and demanded testing for lupus.

How is it possible, asked my doctor when confronted with the list of symptoms, that you haven’t already been diagnosed? Shocked that I had slipped through the cracks for years, my doctor immediately ordered the complete diagnostic battery for rheumatic diseases. It wasn’t lupus after all, but a couple of relatives: scleroderma and Sjogren’s syndrome, two rheumatic systemic diseases that unified all of my symptoms. The decades-long string of mystery complaints was over, and I was started on aggressive treatment for these two autoimmune diseases.

How was it possible that I hadn’t been diagnosed earlier? Isn’t that a wonderful question! How could I have slipped through the cracks year after year as I struggled with pain, respiratory infections, dysfunctional hands, eye problems, TMJ, and all the other medical woes that had parked themselves at my door? Why was there no diagnosis when, as I was to learn later, I was an absolute classic case of limited systemic sclerosis, a type of scleroderma, and that my Sjogren’s was obvious and well established.

In retrospect, the answer is glaringly obvious: I am not common. I have a rare disease (systemic sclerosis), and even though my doctors were well intentioned, they dismissed my symptoms when I didn’t fit the usual diagnostic profiles. I was a zebra in a herd of horses, ill-behaved and refusing to fall into line with their medical school training. Since I couldn’t be diagnosed with any of the normal causes for my symptoms, doctor after doctor concluded that they must be due to something else, like maybe stress… or lack of exercise… or my choices in pain medication. Time after time, I was assigned the blame for my own illness because of my inability to “handle stress”, repetitive motions, bad shoes, lack of exercise, taking ibuprofen, or any other ~~excuse~~ reasonable explanation that came to mind when my symptoms could not be ascribed to common causes. My doctors had been trained to ignore zebras, and these other causes were more plausible to them.

The other reason this happened was because my symptoms were always presented to my doctors in isolation: chest cold, painful eyes, knees that won’t bend, and so on. Symptoms that emerged over decades, and were presented to different doctors. No one saw the big picture until I finally pieced it together myself and then my doctor was shocked by the list: grouped together my symptoms screamed autoimmune rheumatic disease.

Why am I reflecting (and writing) about all of this? This month, March, is National Autoimmune Awareness Month. My story is one that is shared by many, many other people who deal with autoimmune illnesses. One of my diseases is rare (scleroderma), but the Sjogren’s and fibromyalgia are not. In a way, to have an autoimmune disease is to be a zebra because these conditions are elusive, can present themselves with a battery of symptoms that are seemingly unconnected, and don’t respond to the usual courses of treatments like antibiotics, diet and exercise. They can take, just as mine did, many years to diagnose. For many autoimmune patients, they are, just as I was, zebras crying for help in a herd of horses. Trained to treat horses, doctors don’t always hear the cries. One way to combat the problem is to educate the zebras so that they can, just as I did, recognize and group their symptoms together in a meaningful way to present to their doctors to help them make the diagnosis. Autoimmune Awareness Month is meant to educate everyone who might deal with an autoimmune disease: patients, families, caretakers, and doctors.

In my family we know these illnesses well. My grandfather died from complications of rheumatoid arthritis and my father had disabling allergies. I have scleroderma, Sjogren’s syndrome and fibromyalgia. My son has type-1 diabetes and my daughter-in-law has multiple sclerosis. In all of these illnesses there is an immune system that is attacking normal tissue in our bodies; for some of us the attack is moderated by drugs that are designed to disable parts of our immune systems, but it continues nevertheless. Unless there is a cure the damage will continue to accumulate in our organs and tissues. These are the words that are often used to describe autoimmune illnesses such as ours: disabling, progressive, incurable, potentially fatal.

We aren’t alone. There are around 50 million Americans who also have autoimmune diseases. There are over 100 different autoimmune diseases and the need for research, support and treatment is endless.

You can learn more about autoimmune disease at these resources: American Autoimmune Related Diseases Association , National Institute of Allergy and Infectious Disease , and Autoimmunity.

The Scleroderma Chronicles: The cardiac test results have arrived…

Spoiler Alert: there’s a happy ending!

It has really been kind of a rocky month. Following several episodes of shortness of breath, chest pain, heart palpitations and blue lips my doctors decided that I was due for a full round of testing. My primary care physician ordered up a battery of cardiac testing and sent me off to see my specialists.

Cookies — First up: the pulmonologist. I made these cute little sheep cookies to take to the office staff when I went in for my appointment.

I really like my pulmonologist. She is thorough, direct, and answers all of my questions without sugar coating things. I had chest pain in her office and while I was talking to her my lips turned blue right on cue. Wow. It’s like having a trick pony that performs for the audience! We talked about the possible causes, all of which were pretty serious heart conditions, and she decided that I needed to complete my cardiac testing before I did her pulmonary function tests.

I’m not going to lie, it was sounding pretty serious. She thought that I either was developing heart failure, pulmonary hypertension (a fatal complication of scleroderma), or my heart was being starved due to blood vessel constriction.

Next up: my rheumatologist. We discussed increasing my immunosuppressant dosage to crush my Sjogren’s, which has been pretty active, into submission. She hated to up the dosage unless there was no other choice due to the risk of infection, especially since she thought that it was probable that I was experiencing pulmonary hypertension symptoms, and that meant that the pulmonologist should be the lead on treatment.

What was needed, clearly, was some test results to clarify the situation. And knitting. Lots of knitting.

Knitted fabric. — I knitting like crazy all month on the What the Fade?! shawl and finished it yesterday. There has been research that shows that knitting has calming benefits greater than yoga. Since yoga is out of the question right now, I knit.

Are you familiar with Holter monitors? That’s the test where you are hooked up to sensors and wires that go to a device that records your heart’s electrical activity for 72 hours. 72 long, itchy, forced to sleep on your back, OMG, how did this sensor get attached to my hair, hours. Whew. It was done. The results: my heart was normal. Still short of breath and feeling dizzy, I went back to knitting.

Next up was the echocardiogram. Dizzy and feeling faint, I went for the test one morning last week and then headed on over to my LYS for some knitting action. Following my BKB Deb around the store looking for the yarn to knit a Tegna sweater I felt faint and ended up sitting on the floor at one point. This was getting ridiculous! Especially since the technician who did the echocardiogram test told me that she thought I would be very happy with the result…

I began to wonder if the problem could be my blood pressure. After years of battling hypertension that was hard to control I was posting some really low numbers at my checks. Maybe I was getting too low?

I did a little searching on the internet, and discovered that there was some research that suggested that it was important to keep diastolic pressure above the 60s. Oh. I was often in the 60s. Maybe I was sending my pressure down too low every time I took my morning medication. My doctors were so happy with the current numbers, but maybe things had changed. Maybe I didn’t have hypertension any more… maybe the pulmonologist was right about the blood starved heart, but it was due to low blood pressure. I decided that I should check my pressure every morning before taking my meds.

I skipped my meds and started recording my pressure readings several times a day. The chest pain and dizziness disappeared. I sent an email to my primary physician with the BP log attached and we set an appointment to talk yesterday as she had just received the echocardiogram results.

Surprise!! My heart is in better shape now than it was at the time of my diagnosis. My pulmonary hypertension is gone and my heart is now pumping normally. She agreed that my high blood pressure seems to have reversed and that the medications that I have been taking are too much for me now. We agreed to try a quarter dose for a few weeks to see what happens.

The immunosuppressant drug that I am taking has been shown to reverse scarring in lungs, and the high blood pressure drug that I was taking (in too high a dose) also may have positively impacted my heart. My skin isn’t as tight as it was a couple of years ago; it looks like my blood vessels are also now in better shape. Less stiff blood vessels means lower blood pressure. Yay!!

My doctor thinks that the drugs have caused these improvements.

My neighbor, who mows my lawn and prays for a miraculous cure, is sure that God has intervened.

I’m convinced that it was the knitting. 🙂

Next week: the lung testing begins.

The Scleroderma Chronicles: Rocking the Spoonie Clock

I, along with a lot of other people with chronic illnesses, consider myself to be a “spoonie”. If you’ve never heard of spoon theory, it is a metaphor that describes the intricate bargaining game that those of us with limited energy resources play everyday to balance our activities with the little gas in our tanks. Christine Miserandino developed the spoon theory and described it in an essay on her blog in 2005; trying to explain to a friend how she managed fatigue with her lupus, she grabbed spoons and used them as props to represent discrete energy packets. If you only have a limited number of energy units (spoons) to use in a day, you are painfully aware of how many spoons everything that you do costs. A shower? That is a spoon. Walk to the mailbox to pick up the mail? Another spoon. If you want to grocery shop, plan ahead. When the spoons for the day are gone, you are done. If you planned badly, you are basically toast. Get ready for some bad days ahead.

Owner and her cat. — Wrapped in layers of knitted goods, struggling to stay warm, MacKenzie and I enjoy a late night purr break at the height of my flare in December.

Early last December I ran through my spoons and just kept going for another couple of days. I knew I was headed for trouble, but I was in a situation where there were no other options for me. Take care of today and deal with tomorrow when it comes, I told myself.

Oh dear. The flare arrived and fatigue descended with a vengeance. I slept 10-12 hours a night and collapsed in exhaustion for a nap at least twice a day. If energy is counted in spoons, I was down to only about 10 for the day. Not only were the spoons my problem; it appeared that as soon as I got onto my feet and went into motion an internal clock started running. No matter what I did, I could not go more than 2.5 hours without a nap.

Christmas shopping!! AARRGGG!!!

Thank goodness for the internet. I made plans and checked the availability of items I wanted to buy using my phone while in bed. I made sure stores close to me carried the items that I wanted. I made shopping lists in a little spiral notebook that I carry with me (hello… brain fog!!) to help me remember what I’m looking for while in the stores. I planned shopping routes that were short loops that would take me to three stores/stops max and then get me home before my time and energy ran out. I planned the trips for times when the parking lots would be almost empty so I wouldn’t have to walk far.

So, one day I planned and cooked food for the week. Who knew making spaghetti was so exhausting? Before I could get the dishwasher loaded the timer on my spoonie clock went off and I was done.

The next day I made one of the loops. Whew. I got right up from the nap, started up the car and headed off to Kaiser for my monthly blood testing. Then on to Target… hurry, hurry, it has already been an hour. I finished that loop at the book store where I shared a laugh with a mom who was making the same stops as me on her own shopping route. She had also gone to the public library, though. She looked at me kind of weird when I said I had decided to not go to the library as it was too far to walk in from the parking lot there. Ugh. No way was I going to explain about the spoons to her. No time. My clock was ticking; I was at the 2 hour mark and had to check out and drive home. Hurry, hurry. I’m now having trouble walking because my legs don’t really want to go… Brain fog is starting to close in and my head feels buzzy…

Home. Nap. I didn’t even take the packages out of the car until after the nap.

Two more days, two more loops, and I had gotten everything and even got stuff mailed out on one of the loops. Careful planning, lots of patience, and an acknowledgement of my limitations went a long way in getting me through everything. Did you know that if you go grocery shopping late at night there is no line. True fact!

For more than a month I was careful with the spoons and never ran down my spoonie clock. I knitted in bed. I ate my little pre-planned meals and ordered things off the internet when I could. I took lots of naps, kept up on my meds, and did everything I could to manage my symptoms. The Turkish Hell socks lengthened as the list in my notebook got items crossed off.

Today I am through the flare and I must have at least 20 spoons a day. Maybe even 25. I’m rich!! The spoonie clock is up to 6 hours. That’s pretty darn good.

You know, people are always telling me how great I look.

If only they could see my spoonie clock ticking away.

The Scleroderma Chronicles: Days of Wonder

The last time I chatted about my systemic sclerosis status I had just seen my doctors and I was doing great. I had sustained very little additional damage to my lungs and heart, I was taking a new supplement (tart cherry) that was an anti-inflammatory that my doctors thought I could tolerate, and I just flat out felt great. I could walk without pain, I had energy and I woke up most mornings feeling *normal* which was pretty darn amazing.

At the end of June I headed off to the clinic for my usual blood tests, joked with the man who draws my blood every 60 days, and bought myself a Starbucks on the way home to celebrate another successful outing. Two days later I was wondering why my blood results hadn’t been posted to the online portal. I was outside drinking my morning latte with the cats and the roses when the call came; my liver results were fine, but my kidney function had dropped dramatically. Oops. No more tart cherry for me!

Maine Coon cat with a bob tail. — Yellow Boy hanging out with my squash plants. Amazingly, he did not run away when the call came.

That’s when the days of wonder began. Wonder as in: “I wonder what will happen next?”, “I wonder what this is?”, “I wonder if I should call this into the doctor?” , and “Good grief, what now? I wonder when this will end?”

As soon as I went off of the tart cherry extract icky symptoms came back with a vengeance along with some new ones. It’s like they all made new friends while they were gone and couldn’t wait to show them off. Here’s what has been happening over the three weeks.

I woke up one morning with pitting edema in my arms and face. I looked like a chipmunk. I also had shooting nerve pain in one side of my face. Fabulous.
Two days later the edema was gone, but my knees hurt so bad they woke me up at 4am, and that was it for the night. Ugh! They also had swollen lumps on them!! In desperation I smeared medical marijuana cream (from a neighbor – this is Colorado and we have this stuff!) on them to see if that would help. The pain shut off within moments! I need to get me some of this stuff!!
The next day I slept through the night, but when I woke up in the morning the skin across my knees was so tight that I couldn’t bend them until I warmed things up with a heating pad. They itched and were warm to the touch. Maybe marijuana cream isn’t such a good idea after all. I’m losing patience, I tell the cats, who have piled onto my legs too since there is a heating pad in use… When will these cats learn how to make a morning latte?
Shooting pains start in my lower abdomen the day after my knees stop hurting. Diverticulitis, says the internet. Seriously! I wonder if I should call this in? I wonder if I should see that gastroenterologist after all…

Over the next several days I experienced scary low blood pressure episodes, chest pain, fevers, itching, more joint pain, and to top things off I started losing my balance and falling over without warning a few days ago.

Days of wonder, indeed. Nothing lasts; it appears that I’m on a roller-coaster of symptoms that will provide my summer thrills and scares until the ride ends (hopefully soon!). My repeat blood work showed that my kidney function had improved, and my rheumatologist isn’t saying scary things to me any more. My blood pressure is again stable, the chest pain and edema are gone, my balance is restored, and the pain in my face has vanished.

Cinco de Mayo rose. — This is one of the roses in my garden. It is called “Cinco de Mayo“, and I planted it in memory of my mother, who loved roses, who died on May 5th many years ago, and who remains the benchmark for all time for patience, grace and courage in the face of adversity. Of course this rose has been blooming beautifully during these days of wonder.

This could be a really bad time, but I’ve discovered that it is best to just go with the flow and to focus on the ridiculous side of all of this; lumps on my knees, my chipmunk face, and falling over without warning. Really, don’t you just want to bust out laughing at the thought of all that? Thank heavens I didn’t develop a rash! It is also important to notice all the wonder around me. The beauty of my garden and the flowers, the days in bed reading new books, great dinners produced in the crock pot, the antics of the cats, and the joy of putting together a new knitting project. Wonder is endless, easy to find, and costs nothing. Okay, let’s be honest. Binge watching shows on Netflix helps too.

Today I feel a little dizzy, but much better. Hopefully I’m coming to the end of the tart cherry withdrawal. That’s right. Best to stay positive and cheerful.

I wonder what will happen tomorrow?

The Scleroderma Chronicles: My Second Year Report

Well, here I am at the end of my second year since my diagnosis of systemic sclerosis, a life-threatening form of the autoimmune disease scleroderma. Last year I blogged about my illness: I had come through the worst of the grief and horror at the initial diagnosis, had made my way through some scary incidents that sent me flying across town to emergency centers, and was pretty upbeat about where I was in the progress of the disease. I was sick, but I hadn’t developed any of the most serious, life threatening complications. My heart and lungs were fine. I had just been started on some serious immunosuppressant drugs (the same ones that are given to kidney transplant patients), and while they are risky, I had been told that they could really make a difference in my 10 year survival rate.

Hey, you roll the dice and you take your chances. No sense worrying about the unknown future. I drugged up and slept like a baby at night.

Star Trek Meme — The Kobayashi Maru test, as all Star Trek buffs know, was a no-win scenario; it was meant as a test of character. Systemic sclerosis, an incurable, progressive, disabling and potentially fatal disease, can also be considered such a test.

Ready to hear about my second year? Let me give you a hint: buckle your seat belt, because we are in for a bumpy ride.

November-December: the drugs begin to kick in and as they beat my immune system into submission my skin starts to harden up. I hurt everywhere!! I can hardly bear to comb my hair. The place where my flu shot went in hurt for weeks afterwards.
January: I caught the flu. Talk about insult to injury! Here’s the short version: antibiotics, off the immunosuppressant drugs so my body’s immune system can fight back, and then trouble breathing, chest pain, heart palpitations, and a partridge in a pear tree. What a mess! The month passes in a blur.
February: I’m still pretty sick and struggling to breathe. I get bounced back and forth between doctors as the debate about the root cause of my symptoms rages. I begin to pressure my doctors for answers and there is much testing. Oops. All is not well with my lungs and my heart is accruing damage. I get sent to a pulmonologist and she give me an inhaler to help me breath. She also tells me I am in serious trouble and refers me to palliative care. The doctors increase my immunosuppressant drug dosage.
March: Why, hello, Sjogren’s Syndrome. We forgot all about you! In the concern about my systemic sclerosis, the bad boy of my autoimmune twosome, everyone forgot that I also have Sjogren’s Syndrome, another serious autoimmune disease that causes dry eyes and mouth. As it turns out, it can also cause small airway disease (think never-ending asthma attack) and it has pushed me into chronic respiratory failure. Hello oxygen machine. You are my new best friend.
My new best friend!
April: new lung scans are back, and while I am diagnosed with interstitial lung disease, it appears that it is only mild. Huge sigh of relief!! There is also consensus that my pulmonary hypertension has not advanced. Both of these diagnosis, while still early and mild, are very serious, and the decision is made for palliative care to continue to follow me. Bummer!
May-July: Sunshine! Heat! Burning muscles, aching joints, gastritis, dizzy, dizzy, dizzy, and I notice that my lips are blue. I’m on oxygen 24/7 by the end of July.
August: my internist changes my meds to bring my heart rate up, and suddenly I have enough oxygen. The heart palpitations stop and after more testing I come off the oxygen. The 6 month Sjogren’s-driven asthma attack is finally over.
Summer quilt and socks for my poor hurting feet.

September-October: why does it hurt to walk? What is up with my feet? And this whole barfing in the middle of the night is getting downright annoying… My internist tests me to see if I have an H. pylori infection.
November: Well, doesn’t this beat all. The H. pylori test came back negative and I am diagnosed with gastroparesis. The muscles of my stomach are too damaged by systemic sclerosis to work correctly; the damage is irreversible. I start eating a very limited diet of soft foods and dairy. Ironically, I can now eat jelly donuts, but not fresh baby carrots. I’m losing weight anyway.

Little Greenhouse — The gastroparesis diagnosis hit me hard even though I kind of knew it was coming. I stopped to get a little cheer-me-up on the way home. Check out the little greenhouse I put together for the kitchen window. As always, MacKenzie had to help out with the picture.

Flowers — Here’s the flowers. Aren’t these cute? They were sold at the local nursery to put into “Fairy Gardens”

and how could I resist adding the little cat and the mushroom? Those plants are miniature Kalanchoe that should eventually bloom again.

See, a bumpy ride that is still going, but a year that was also rich in gifts. Palliative care forced me to face the future with more courage and to make end-of-life decisions for my family and to start cleaning out my house of junk. I talked to family about my medical power of attorney. I enlisted one of my doctors to manage the medical team and I began to feel more in control of my basically out of control disease. I began to knit gifts for those I love with a purpose: everything now is a piece of me. In my mind the shawls that I am making for everyone I know are the “Good-bye Shawls”. I am on fire to make as many fingerless mitts for other scleroderma patients as I can. At the end of the day, this year was not one of struggle and heartbreak as I dealt with the endless march of a disease that has no pity or remorse. Rather, it was one of care, giving, creative fire, good friends, and the meditative peace of knitting.

Okay, I do get cranky at times, and there has been some crying. I get short with annoying salespeople because it is so hard for me to shop. I told my ex-husband I was tired of hearing about his “stupid-ass” motorcycle. I yelled at the cats. I hate when people say, “Well, you look great!” in a way that suggests that I’m not really all that sick at all. I wish that they were there to hold my hair when I hobble to the bathroom at 2am to throw up that nice meal that I hopefully ate but couldn’t digest. There. I got it off my chest, and I feel much better. Aren’t you relieved to hear that I can be petty and mean from time to time?

Tomorrow is Thanksgiving Day. You know, it is easy to focus on the day: travel, turkey, family and the descent into wild Christmas shopping. Sometimes we forget the history of this national holiday; thanks for a good harvest and the blessing of probable survival through the coming winter. It is also a time to reflect on the bounty of the last year and to be grateful for the gifts it brought.

In spite of all the bumps of the last year, I am grateful for all of the gifts I have received.

Happy Thanksgiving everyone!!