A few weeks ago I went to see my primary care physician for help with shortness of breath and joint pain. I totally scored! I walked out of there with a tetanus shot (fail), inhaled steroids to control my small airway disease (win) and an anti-inflammatory gel to put on my swollen, painful joints (huge win). What a difference to my life these new medications have made. I can breath! I can walk without pain! I can sleep through the night! This is huge, people. Take that Sjogren’s and scleroderma! Feeling so much better I began to spend more hours up and about, and there was a lot more knitting happening too.
Oops. Then this happened.
One of the problems of getting better is that swelling is going down and the tissue is tightening up on some of my joints. My knees are really tight. My wrists are stiff. When I knit my joints loosen, so I thought I was helping them stay flexible. That is probably true to a certain point, but I guess I now need to be careful to not overdo things. Sigh. I am using the tendons in my left hand the most since I knit continental, and I push the yarn over the needle with my middle finger for each purl stitch. I’m really fast that way, but my tendons have totally rebelled in my left hand and wrist. To make things worse I can’t take NSAIDS or any other anti-inflammatory drug because of my scleroderma-battered kidneys and stomach. Sigh. My doctor ordered a knitting hiatus.
I want to be a compliant patient, really I do. I read a couple of books, managed to get through a couple of days without knitting, and then I snapped. I must knit!! Want knit now!! Knit, knit, knit. Why go on if I can’t knit? Sniff. Obviously this is totally unacceptable and I am going to figure out how to knit in spite of this bad boy wrist. Really, my left hand is the one having trouble, so maybe I can work around that. I tried to tension the yarn in lots of creative ways before I remembered that lots of people on the planet hold the yarn in their right hands. English knitting. I have never mastered purling English style, but now I’m really motivated!
Last night I finished the stripes and am ready to enter the last section of garter eyelet. Yay. Knit all the way! I can do this! Then it is into the last, ribbed section of the wrap.
Ribbing. That is going to be slow going. I think that I will check out Norwegian purling. Somehow I need to do this without moving my fingers too much. Yay. A new stitch to learn.
I’m on it!
Take that, scleroderma. You are messing with the wrong knitter!!
You know, I kind of view myself as a happy camper. I have more things (ahem… knitting projects) going then I can get finished on any given day or week, books lined up to read, and a “to-do” list that I’m slowly working my way through. Hey, people, I fixed the loose tiles on my kitchen floor last week!! My cat MacKenzie is my constant sidekick throughout the day as I knit, work in the garden, read in bed, and even with me (underfoot, demanding cookies) while I’m cooking. Even on the bad days when I’m pretty much down for the count, I manage small victories. There is just one problem with this picture.
I just don’t fit in the world all that well anymore. In my home, living the life that I’ve created for myself, it is really easy to forget how much I have adapted to accommodate the limitations of my scleroderma, Sjogren’s, and fibromyalgia. Once I go anywhere else reality hits me hard. Every trip out of my house is going to come at a cost. Here are the worst of the offenders that will lay me low.
Air Conditioning I know that almost everyone in the world is grateful for air conditioning in the summertime, but for me it is a royal nightmare. The shock of walking into a refrigerated building on a hot summer day will trigger an immediate Raynaud’s attack. I pull on long sleeves and fingerless mitts as soon as I get into the building, but my lungs know what’s up and I have trouble breathing. The airflow makes my eyes burn; I’ve been reduced to wearing my sunglasses indoors to protect my eyes. Don’t even get me started on the refrigerated cases churning out cold air; you haven’t lived until you’ve had to pull up the hood of your sweatshirt and the sleeves down over your hands so you can score some butter and eggs. If that wasn’t enough, there are also usually…
Scented Products Almost all buildings use scented cleaning products and sells additional items with scents. Candles. Lotions. Laundry soap. The scented bathrooms are a nightmare. If I’m not already in trouble with my breathing I will be if I have to walk down the laundry detergent aisle at the grocery store: I also start to itch and my face swells. Why do these chemicals even exist? They can’t be good for anyone!
Restaurants These are a special kind of hell for me. All the drinks come cold and with ice, and the entrees are served piping hot. There are other landmines that I need to avoid: salt, lactose, fiber. I have to carefully select something that is very soft and that will behave itself in my gastroparesis stomach. I can’t have spicy food. I can’t eat fresh veggies. Actually, to be safe, some of this food should go through a blender… I actually once soaked a cut up sandwich in soup so I could eat it…
Walking I am trying really hard to meet my walking goals every day, but I stretch those steps out over the day. A trip to run errands can be just exhausting if I’m on my feet for a couple of hours at a time. I need to always carry water, be aware of the location of bathrooms, and have places where I can sit down if I need to.
Sunshine It makes me sick! Enough said.
Recently I had a tough talk with myself about pruning down my outings and being more strategic about how I expend my energy. I need fewer outings, and my destinations need to be closer to home. I need to live online. I need to in a safe environment as much as I can to manage my diseases.
My home is my safe house. I have no air conditioning and I minimize air flow. I keep the temperature in the mid 70’s in the day so that my joints and lungs will be happy. I cook all of my own food, I don’t own any salt at all, and everything that I drink is room temperature. Fruits and veggies go through the blender to become smoothies. Every product that comes into the house is scent free. I’m always close to a bathroom or a soft surface to crash onto for a quick recovery if I get dizzy. My stairs have wrought iron rails that I use effectively on bad joint days. Flourishing in my safe house I sometimes forget how sick I am because, well, I have fewer problems.
Tomorrow I have a doctor’s appointment so I listed up some symptoms and issues that I need to ask her about. It is quite a list now that I look at it, and it kind of underscores how chronic illness can trick you into thinking that things that would normally send you screaming into urgent care are “just another day of scleroderma.” Shortness of breath is an almost daily thing. When I glance into the mirror these days I sometimes notice that my face is blue. One hip keeps failing me; okay, I actually have to lift that leg to get into the car. My joints swell so much that I can’t sleep at night.
But I am good, here in my little safe house with my gardens and cat.
Tomorrow my doctor and I will attack some of these scleroderma/Sjogren’s issues. I kind of think that lung testing and a MRI of my hip are in the future, and that there may be follow-up with my pulmonologist. I’ve been gathering up my energy in preparation for these outings into a world that is dangerous for me, knowing that after each outing my garden swing, knitting and latest book will be waiting for me. With a room temperature ice tea.
It’s summer now. I can hardly believe it, things have gone by so quickly. I’m feeling pretty darn good these days and have been steadily working my way through projects around the house and in the yard. It is cutting into the knitting time, but I’m still being pretty productive.
Yep. I’m out of the flare! It was only about 2 weeks this time, which is something like a record. I credit my dermatologist and the new antibiotic/anti-inflammatory that she started me on for this. Scleroderma/Sjogren’s/fibromyalgia begone!! Okay, they are still misbehaving on a daily basis, but I have energy, my brain fog is gone, and I am up doing stuff every day. Good days.
Anyway, back to the knitting and the yarn destash project. Back in January I cleaned and organized my stash, gave myself a good mental shake, and resolved to use/remove at least 50 skeins of yarn from the stash. I made great progress over the winter, had a little slip when I went to the Interweave Yarn Fest, and have been catching up from the setback since then. Here’s what I have finished since my last report:
I still have a some projects on the needles: a Suburban Wrap, a What the Fade?! shawl, and another pair of socks. All this knitting brought me up to 25 skeins used this year, so I am right on the pace to meet my resolution.
Tomorrow is my DIL’s birthday so she took a tour through the stash hunting for some gift yarn. Woohoo! She took 5 skeins of yarn that I don’t really love or have a specific project for, and three skeins that will make a fabulous Suburban Wrap of her own; those three are a set that I love and felt a pang in letting go, so they make the gift.
There has been a surge in the Destash Resolution project. With the skeins that just left the building I am now up to 33.5 total skeins used/removed this year. Yay! Some of those yarn bins are getting kind of empty and it will be time to reorganize the stash soon. I already have two sweaters and another wrap organized and waiting to move into the knitting workroom, and the goal of 50 skeins is suddenly in reach. Woohoo! Maybe I should up the total?
Best to not get cocky! I’ll just keep knitting on and let’s see what happens.
Happy 4th of July everyone who is celebrating that holiday.
Today is World Scleroderma Day. Tonight the Niagara Falls will be illuminated blue and white in recognition of the day. All this month (June) there have been walks and outreach to raise awareness of this disease and to raise money for scleroderma research, and scleroderma patients all over the world have been urged to post pictures of their faces (and smiles) to made this disease more real and relatable.
The purpose of this day is to try to raise awareness of an illness that is mostly invisible and relatively unknown.
So what is scleroderma? It is a rare autoimmune disease that is a member of the rheumatic diseases family. The name “scleroderma” means hard (sclero) skin (derma), which is the most visible symptom. Scleroderma is the general name that is applied to a group of connective tissue diseases that may target only the skin, or the skin plus internal organs, or just the internal organs themselves. The words that are used to describe my type of scleroderma (limited systemic sclerosis) are rare, chronic, progressive, disabling, and possibly life threatening. This is a lot to wrap one’s head around, so I’ve decided to break it down.
Rare: Here in the United States the CDC has defined a disease with fewer than 200,000 patients as “rare”. Systemic sclerosis, with about 1-2 diagnosed people for every 100,000 citizens fits the bill. To be rare means your illness struggles for research and treatment funding as the patient population is small and almost no one is personally impacted by the disease in the general population. Hence, Scleroderma Awareness Month and World Scleroderma Day. Thank you, Niagara Falls!!
Auto-Immune Disease: The immune system, designed to protect us from foreign invaders like pathogens, is attacking some of the components of normal cells in scleroderma patients. The exact components can be identified using the antibodies of scleroderma patients and they are essential proteins found in the nucleus of the cell. My antibodies are attacking a protein found at the kinetochore of dividing chromosomes. I can’t help but wonder what the heck has happened here that I ended up with antibodies like these? I also eventually wondered if my cancer risk is increased since there is something off with this critical structure used in cell division (it is).
Connective Tissue: I used to try to explain this type of tissue to my AP Biology students. Connective tissue… well… it connects. It is what holds your bones together to form the skeleton. It gives support and stretchiness to your skin. It is involved in all the organs of your body, and holds the organs in systems together. It is essential to organize your muscles. In systemic sclerosis, all of this tissue can be involved in an inflammatory attack of the immune system and scarring occurs. Skin gets thick; hands curl, joints won’t bend, smiles twist and faces harden. Muscles and joints hurt. The smooth muscle in the digestive tract can be so damaged that organs don’t work right. Blood vessels are damaged and spasm, cutting off circulation to extremities and organs. The heart can get scarred. Scarred lungs prevent oxygen passage. Scleroderma, invisible to the outside viewer, can be devastating to the patient.
Chronic: There is no cure, and it never ends. There are, however, treatments for individual impacted organs that are really helpful.
Progessive: Damage accumulates over time and conditions worsen. My doctors are monitoring my kidneys, heart, lungs and GI system. So far I am doing pretty well, but my GI tract is taking the most damage.
Disabling: Yep. It is getting really hard to walk, and I just don’t fit all that well into the world anymore since my diet is very restrictive, air conditioning isn’t my friend, and sunshine makes me go into a flare. Right now I don’t need supplemental oxygen, but if that comes back it will further restrict my independence.
Life-threatening: It took me months to think this one through, but eventually I did google “life expectancy of systemic sclerosis” and discovered that for me, with my treatment plan and risk factors, survival rate is about 75% for 10 years after diagnosis. Overall the death rate of scleroderma is 50%. Oh. Now I know. Who wants to live forever?
This week I wrote a letter to my congressman asking him to sponsor a bill that would fund research into fibrotic diseases like scleroderma and cystic fibrosis. I haven’t heard back, but maybe if he has heard of one of these diseases or knows someone impacted by scleroderma he will do it.
Spring was challenging this year. It was colder and wetter than usual, with lots of windy, stormy days. I wasn’t able to get out to work with the roses as I usually did in past years, but I did manage to pull up the worst of the weeds and dumped some Miracle Gro on the front flowers one day. Really, there was some rose neglect going on, for sure.
When I went shopping for the front roses I looked to see what was available and then checked the list of recommended roses for Colorado published by Colorado State University on the nice little pdf in the above link that gave hints for successful planting. These roses, picked to go with my house, are called Hot Cocoa. They are floribundas, so there should be more blooms following these beauties.
The roses in the back garden were finally rescued from the overgrowth of weeds one afternoon a couple of weeks ago, and look what emerged!
This rose bush, Princess Alexandra of Kent, has never looked this good before. The blooms are so big the plant is having trouble supporting them, and this rose bush never got fertilizer. It has to be the cool, wet spring.
MacKenzie and I have been working diligently in 30 minute increments to get weeds out of gardens, and the most astounding discovery has been what happened to a virtually unloved rose along the back fence. Seriously, this is a rose that “went wild” when the original grafted rose died and the roots took over. I kept cutting back the runners, pulling it out of the ground, whacking it back into a reasonable rose size, and basically losing the battle with this rose that is determined to live.
That is all one rose plant that has grown immensely in the prime rose growth conditions of the last couple of months. I have now surrendered to fate, pulled the rose all back and attached the canes to two trellises and the top of my garden swing. Clearly, this rose will be growing down the fence in the years to come.
Did you notice the rotting seat to the swinging garden chair? Ugh. It is all nasty and sagging these days and clearly needed to be replaced. This week I cut the seat off and went to work to replace it with something that will allow me to return to my garden where I can read and knit in the presence of the One Rose to Rule Them All and the other flowers that are flourishing this year.
I made sure that the seat was really taut so that it wouldn’t sag when I sat in the swinging chair. I reattached the seat to the frame and then lashed on another clothesline as “warp” across the seat back and then called it quits. If I need to weave in more pieces of line I can do it later, but I’m thinking that just the warp across the back will be enough to make the swinging chair function the way I want it to.
Did you notice the weeds? Sigh. It is endless, truly it is. I’m resolved to not overdo things and will continue to work my way through the gardens, little by little, 30 minutes at a time, and day by day my yard and the gardens are looking better.
Between weeding sessions I will be hanging out in my garden swing, knitting away, with my beautiful roses. My cat MacKenzie will be sleeping in his garden, and hopefully the dog next door will be behaving herself.
This week the heat finally arrived and we hit the 90’s. My scleroderma joints are happy with the warmer weather, I continue to flourish with the new drug changes, and I can finally knit outside again. Yippee! The lavender plants and yarrow are covered with buds, and I have lots of perennials that need to be freed from the weeds.
When I was a girl my grandmother had a little phrase to describe someone who was acting crabby (little me, of course) as having gotten up “on the wrong side of the bed.” You know what she was talking about. A person being constantly irritated by a never-ending series of triggers.
Today I woke up pretty sore, crawled down the stairs to make my morning latte, and once I had pulled myself up the stairs and back into bed I found a post from another blogger, NothingButKnit, on my phone called ThingsThat Are Bugging Me Right Now: A List. Oh. A list of all the things that are bugging me right now. Wow. Where do I start? There are so many things that bug me. Yippee, I can do this!!
NothingButKnit had only 4 things on the list. Gee. She is kind of a light weight, don’t you think? I mean, there are so many things that are bugging me at the moment it is impossible to prioritize them, but I can certainly try. Ignoring all the things happening in politics and current events, which are their own exhausting list that force me to call or write my congressmen EVERY STINKING DAY, and excluding my trifecta of autoimmune diseases, here is my own list:
Robocalls. Seriously. How many times do they think I need to be informed that this is their last attempt to contact me about my insurance. Especially since it is several times a day. This is why nice people can’t turn on their phone ringer.
Food packaging that I can’t open without dragging in the tool box from the garage. Don’t laugh. I have half of the toolbox in my kitchen drawer at this point. The big stars are the rose pruners and a pipe wrench.
Hailstorms! I bought a new car last summer and I’m pretty nervous about hail. A few weeks ago I got caught in a storm that dumped 4″ of hail; I was pumping gas when it started and was able to stay under shelter. Last week there was golf ball-sized hail. I don’t even want to think about baseball-sized hail…
Bindweed. This plant grows at virtually the speed of light, swallows rose bushes overnight, and never dies no matter what I do. Stop bugging me, bindweed!!
Yowling cats. Cats that belong to my neighbors wander into my yard, roll in the cat mint, and sleep in the best cat sleeping spots in the yard. They also stop by the ground-level windows to chat with MacKenzie. How sweet. Especially at 4am. I love the sound of hissing, smacks on glass and yowling in the morning, don’t you?
Barking dog. Ugh. The neighbor next to me got a sweet little puppy three summers ago that grew up into a territorial barking, growling, fence-charging Pitbull nightmare. After months of work she no longer goes berserk when I go into the yard, but if this dog sees a cat… it gets scary. The dog has chewed a hole in the fence that she can stick her face through. All the better to watch and bark at the cats that come visit my yard and MacKenzie. When she sees a cat she growls, body slams the fence and barks furiously while tearing at the hole in the fence.
This week I was outside pulling weeds with MacKenzie (between thunderstorms with the phone ringer off) when the dog suddenly saw him through the fence. Oh, oh. The dog got her face through the fence, the growling and barking commenced and I started running towards MacKenzie to see if I could shoo him away.
Nope. MacKenzie snapped, charged the fence from his side and went into total feline fury mode. In stunned amazement I watched my geriatric cat hiss, slash, and crash into the fence in a frenzy I’ve never witnessed before. I’m sure there was yowling, too. Every time the dog put her face through the hole, he let her have it again. Just as I was heading to get the hose the dog broke off the attack and it was over.
The dog’s face was slashed in several places and she hurt herself trying to get more of her jaws through the hole. Luckily, she wasn’t able to get a good bite on the cat. MacKenzie, two claws ripped off and toe pads damaged by hitting the fence, stalked off to take a nap in a nearby (unweeded) garden patch. The dog’s owners now keep her inside to PROTECT HER FROM MY CAT and they repaired the hole in the fence that very night.
Be like MacKenzie, I tell myself. Don’t let things bug you too much. Defend yourself and smack down the things that you can, and spend the rest of your time sleeping in the garden.
Excuse me, I must head out to pull some more weeds, then it is knitting time. Maybe I will listen to an audiobook with my new sound-cancelling headphones while I knit. Outside, on my swinging garden seat, with my roses.
Robocalls, hailstorms, weeds, barking dog and yowling cat, begone!!
The last few weeks have been hard : rain, snow, an exceedingly badly behaved ankle, and all the fun of never-ending chronic complaints. Ugh! The weather fronts just kept rolling in, sending the air pressure swinging wildly and my breathing and joints into their own little crises. “Will it never end,” I asked my ankle and MacKenzie? “Nope!” said the ankle with a little sneer in its rotten little ankle voice. “Don’t count on it,” said MacKenzie as he squirmed deeper into the current knitting project with one paw extended, claw flashing, reaching for my yarn.
As you can guess, I’ve developed a nasty mood of my own.
There was a nice week with sunshine that made me and the ankle feel better: I got some yard work done and planted flowers. Then the weather turned on me and once again I was in bed, listening to audiobooks and knitting with my ankle propped up.
What is up with this ankle, you ask? Good question! Three weeks ago it suddenly developed a hard, red, and hot lump that radiated pain ruthlessly. The infection began spreading under my rhino-hide scleroderma skin. I was started on antibiotics, but the pain continued, the redness continued spreading around the outside of my ankle, and a dent in my leg appeared where the redness was. I chatted with a doctor online and she decided that I should be checked for cellulitis. Cellulitis?! Off to urgent care I went, and as soon as that doctor saw my ankle he ordered testing: another blood clot hunt and x-rays to see if the bone was damaged. Limping and in pain, I headed off to get the testing done. As I drove home from the ultrasound a call came in with the results of the testing: a benign tumor was found, and I was being referred to a dermatologist for treatment.
It’s like they forgot about the cellulitis! “Where are my new antibiotics?” I asked MacKenzie when I got home. MacKenzie just carried on for attention and cookies, so I made the appointment for the dermatologist to look at my ankle before returning to my knitting and propping the ankle back up. I made a little cage out of a box to put in my bed so I could sleep without the covers touching the ankle… “I have a tumor,” said the ankle in its nasty little voice.
The next day the redness and heat were a little better, but the pain and lump on my ankle remained. I resolved to head back to urgent care if I got worse, and carried on with my knitting. Tumor, whatever. I have scleroderma and I was betting that was what made the lump appear unusual in the ultrasound. I was pretty sure this was just another chapter in the scleroderma adventure.
Two days later I got in to see the dermatologist. Wow. Just wow. I am in love with this doctor. This is the doctor that I have been waiting for since my first diagnosis FIVE YEARS AGO!
Aside: I have been battling eczema for months. All of my doctors have seen my eczema face. Since I have noticed that a dose of ibuprofen (which I’m not supposed to take because of my iffy kidneys…) will give me 24-48 hours of happy joints with no fatigue or brain fog symptoms, and some eczema relief, I have literally begged for some type of anti-inflammatory drug to help me. Even though I am taking drugs that are crushing my immune system unto submission, there is something else that I need. I have cried in my internist’s office. Evidently there isn’t anything that can be given to me that won’t hurt my kidneys…
This dermatologist entered the office, took one look at my swollen, red and itchy face, and said that this was unacceptable and she was going to put a stop to it. Then she said that she had looked at the ultrasound and that there wasn’t anything that worried her there: scleroderma had caused fibrotic tissue to form. Then she wondered out loud why they had forgotten that I had cellulitis? Then she prescribed antibiotics that are also anti-inflammatory along with an anti-inflammatory cream to get my eczema whipped into shape. I was told to email her in a couple of days if there wasn’t a dramatic improvement to my ankle and face because she was going to make more referrals to get to the bottom of the eczema with an allergy specialist. And that the ankle should continue to be watched.
By the next morning it was obvious that I was better. Much better. Within a week my face was clear and the eczema was gone. My ankle is also much better, the lump is gone, but it continues to ache and carry on when I walk. My brain fog is gone. Fatigue? What fatigue? It’s like I needed an anti-inflammatory antibiotic or something…
My new, most wonderful in the whole world dermatologist is going to maintain me on the antibiotic. I’ve been on this drug before so I’m not worried about my kidneys at all.
I’m sorry I said all those nasty things to you, ankle. All in all, you were a blessing in disguise.
But anytime you want to stop with the achy hurt, that would be fine!