System Sclerosis – Yarn, Books & Roses

The Scleroderma Chronicles: Unforeseen Circumstances and Unintended Consequences

I guess almost everyone in the world knows by now that the United States Supreme Court issued a ruling last month (June 24th) that overturned the constitutional right for a woman in the United States to seek an abortion at any time during the first two trimesters of pregnancy.

This post isn’t really about abortions, okay. This is about the unbelievable unintended consequences of that decision for women who are dealing with unforeseen circumstances. Women who are dealing with medical conditions that they never saw coming, and that they absolutely did not bring upon themselves.

Like autoimmune disease. Like cancer. Like any one of a number of medical conditions that require serious, high-risk medical interventions by the medical professionals who are treating that woman.

My first inkling that there might be a problem with the Supreme Court ruling that was much larger than what was being reported in the press happened the evening of June 29. A woman in one of my autoimmune online support groups posted that she saw a message from a doctor who had a patient reporting that she couldn’t get her methotrexate prescription renewed. I literally couldn’t sleep that night I was so upset. In the days that followed there were more reports, and this is really happening to some women. They are being denied refilling of their methotrexate prescriptions. This drug is a common one used to treat autoimmune diseases like rheumatoid arthritis, lupus, and scleroderma. It is a chemo drug, it can harm an unborn child, and it can also be used to induce an abortion. Here is an article on Health.com, another at msn Everyday Health, and this one from Time.com.

There are some serious drugs there in my hand. The green pills, Myfortic, can harm an unborn child by causing birth defects or a miscarriage. I take 6 of those every day. The white capsule, omeprazole, should only be used “only if the benefit outweighs the risk to the fetus”. I have to take two of those each day. That little pink pill towards the upper left is the really big problem in my hand. That drug, ambrisentan, required a rigorous enrollment process with paperwork from my cardiologist and myself along with two interviews by pharmacists. I had to prove that I could not get pregnant to avoid taking a pregnancy test prior to each month’s supply of the drug being shipped to me. Even with all of that, I am screened each month before the next month’s supply is overnight express shipped to me. This drug poses a serious risk to a fetus. In my support groups for pulmonary hypertension there are women who are reporting that they are getting dropped from the programs that allow them to get the drug.

I’m okay because I’m beyond childbearing age. Many other women who are dealing with autoimmune diseases that require drugs such as these are of childbearing age. Why? Because the people in the population who are at the greatest risk of developing an autoimmune disease are women of childbearing age, that’s why. Because of the recent decision about access to abortion these women are also now at possible risk of being denied treatment for their autoimmune disease, or in the worse-case scenario, access to an abortion in consultation with their medical professionals.

I literally couldn’t sleep when I read the first reports of the problems with access to methotrexate in my online forums. This is absolutely unbelievable. This is unbearable. How could this be happening to a population of desperate woman, through no fault of their own, who are in this horrible situation? Right now, methotrexate is being targeted, but there are all these other drugs that are used for so many patients with so many conditions. Women, absolutely, are at risk of receiving inferior health care in the US.

This is awful. Have a rose. Right now, I need a rose. And a hug.

This is hitting me hard this evening because I have been dealing with autoimmune pneumonia since last December. My doctors are trying to get it under control with high dose immunosuppressants, but I am coming off one of them right now and I am struggling with shortness of breath and chest pain once again. I’m back on daytime oxygen and I’m feeling a little low. The lung biopsy was the first engagement with my interstitial lung disease, this current drug strategy the second battle, and the third battle is looming on the horizon. This isn’t a disease; it is a war. I never asked for this, and yet, here I am trapped in this unforeseen circumstance, engaged with an uncurable foe. Without the drugs in my hand above, I would already be gone. Yay, science!!

I think that there is another CT scan in my near future, and then there is a possibility that my doctors will move to the Plan B (see what I did there) that they have already discussed with me. Cyclophosphamide (a chemo drug) and OFEV (an anti-fibrotic drug) are on deck if my doctors decide to escalate my care. Both of these drugs can harm an unborn child. I will get access to these drugs. If I was in my 30s, as many other members of my support groups are, it might be a different story. What about women in other support groups that I don’t belong to who just got diagnosed with cancer or an equally serious disease who also need medical treatment with high-risk drugs such as these? Women of childbearing age. Women who may already have children who they need to think of and care for in their health care journey.

Being diagnosed with an autoimmune disease like the ones that I have (systemic sclerosis and Sjogren’s disease) is a punch to the gut. Being denied access to treatment because of your childbearing status is an unbearable second blow. Becoming pregnant while on one of these drugs would place a woman in an impossible situation. Nothing, NOTHING, about this situation is good. Where is the privacy for these women? Where are the HIPPA protections that they are entitled to? The decisions that these women face are absolutely heartbreaking, morally complicated, and ethically challenging. They deserve privacy as they make them along with their health care providers, religious advisors, and families.

This post isn’t about abortion, not really. This post is about unforeseen circumstances and unintended consequences.

I feel a lot better for having gotten this out.

Peace be with you all.

But if you decide to share this post, write a congressperson, join a march, or take some other action to ensure that women have equal access to health care, that would be great.

The Scleroderma Chronicles: June is Scleroderma Awareness Month

Five years ago the course of my life altered forever when some blood test results ordered by my doctor arrived: the results showed that I definitely had two autoimmune diseases. Specifically, I was producing antibodies that were diagnostic for scleroderma and Sjogren’s disease. I was expecting lupus, so this was kind of a ~~surprise~~ shock. After a quick trip to Google to establish what type of scleroderma was associated with my positive test results I burst into tears. It was worse, much worse, then I expected.

The scleroderma diagnosis was the problem. Through an unbelievable sequence of serendipitous life events I was more knowledgeable then the average newly diagnosed patient, and I knew that scleroderma was a disease that impacted connective tissue, that it was progressive, disabling, and that there was no cure. This was a life-altering diagnosis, and I was in for a long fight that would last the rest of my life.

You see, I used to work in a rheumatology research lab, and I did research in scleroderma. I was a member of the research team that found the first identified antigen associated with scleroderma. I had visited scleroderma patients in the hospital. Later in my life I taught AP Biology and spent years trying to explain connective tissue to students. It’s a type of tissue that we just never think of, but it is critical in organizing and operating our bodies. Connective tissue makes your skin elastic and strong. It organizes your muscles and makes up your tendons and ligaments. It is a critical layer in your blood vessels, and is part of the essential structure of all of your organs. In scleroderma all or parts of this connective tissue is under attack by your immune system.

As white blood cells invade my tissues and attack this connective tissue it produces too much collagen in response. The built up collagen produces thick layers of tissue and scarring. My fingers look really swollen, but it is actually very thick hard skin. My skin is also getting really shiny which means that the collagen is hardening up and losing flexibility. Must knit faster!!

You can perhaps see that same thickness on my face, especially on my cheeks. It means that I don’t have wrinkles, but it is also hard to open my mouth, my smile is mostly gone, and I can’t turn my neck well. Crazy, huh.

That is the most ironic aspect of scleroderma: you look pretty darn good, especially if you are a senior citizen like myself, but you actually struggle daily with your illness. For many scleroderma patients their disease just involves the skin, but for others, the disease is more than skin deep.

As it turns out, my skin is the least of my worries. The rare type of scleroderma that I have, systemic sclerosis, also causes scarring of internal organs. The muscles of my stomach and esophagus have lost function. My kidneys are damaged and I have chronic kidney disease (stage 3). My lungs are scarred and my diaphragm isn’t exactly happy any more. Part of my stomach herniated up into my chest this year… whatever was it thinking of?! My tendons are getting calcified due to inflammation and at least one has partially ruptured. My muscles are sore to the touch and I have bruises everywhere. I have nerve damage and trouble controlling my body temperature. It’s hard to walk. Blood vessel damage affects circulation to my hands and feet and I’m starting to develop open sores (ulcers)… There is a long list of diagnosed conditions linked to my scleroderma, but you get the idea. Pretty much I’m a ~~walking~~ limping train wreck. Well, a knitting train wreck for sure!

There is no cure for systemic sclerosis, but there are treatments that really help a lot. I am taking four different drugs to crush my immune system into submission; it’s a balancing act as I need my white blood cell count to stay high enough to protect me, but low enough to control my symptoms and prevent more damage. I take a drug to shut off the acid produced in my stomach so I won’t accidently inhale it in my sleep since the muscle barrier that usually keeps it in my stomach is now gone. I take a couple more drugs that help control inflammation, and some supplements that help with nerve damage. I’m on oxygen at night. All of these drugs/supplements have made a huge difference for me: my last lung scan showed improvement and my high heart pressure, the most concerning complication that I had, has returned to normal ranges. My kidney damage continues, but it has slowed way down. There is something funky going on with my red blood cell count, but you can’t win them all, right? The main point is that I continue to manage and live independently.

MacKenzie and I last year when I posted this online as part of the “Face of Scleroderma” campaign.

In short, I am a mess. And yet, to the joy of my doctors, I continue to do really well. Okay, I have blue lips, am short of breath, and struggle with tissue damage, but I also continue to thrive compared to other scleroderma patients that they treat. I have had to make many changes to my life, but I have found work-arounds and I still do things that I love. Attitude is all!

Well, knitting, the cat, and the garden are pretty darn essential, too!

So, there it is. What an annoying disease, right? How dare it make you look younger while shortening your life? How dare it do all of this invisible internal damage that makes people think that you are lazy or an attention-seeking hypochondriac when actually you view each day that you are able to leave the house as a personal victory? I’m in several online support groups and there are people dealing with crushing negativity like that. I can see how it can happen; it is so hard to understand something beyond your own experience that is hidden from view.

That’s why there is Scleroderma Awareness Month. It is hard to have a rare disease, especially when it is one that is hard to pronounce (Sclero… what?!). It’s harder still to have one that has no cure and a pretty high fatality rate (hey, with all of the drugs that I’m on my 10 year survival rate is now up to 80%!!). It makes you learn to laugh in the face of terminal complications while forcing you to take every possible precaution to avoid contracting Covid-19. It messes with your head; it gives you power, but it’s also strange and a little lonely.

That’s why we scleroderma patients share our journey with all of you every year so you can get a glimpse of our lives.

If you look harder you will see the signs of my scleroderma on my face. The small red spots are called telangiectasia and are symptomatic of my form of systemic sclerosis. The skin of my forehead is tight and shiny, my hair is falling out, and my dimples are now buried under my thick skin. My upper lip is trying to decide if it wants to turn blue…

I am the Face of Scleroderma.

Footnote: In addition to scleroderma I also have Sjogren’s Disease and fibromyalgia. The symptoms from these three diagnosed conditions overlap and always make things interesting in sorting out my treatment plan. You can learn more about any of these autoimmune disease by checking out the links in my post.

MacKenzie Speaks: The Tale of the Turkish Hell Socks

Hi. I’m MacKenzie.

Cat face — I know that it has been a long time. I hope that you haven’t been missing me.

The Mother of Cats has been a severe disappointment for just weeks and weeks. She caught some kind of cold early in December, carried on like a baby for over a week (nasal spray, salt water gargling, boxes of tissues… Yellow Boy and I became quite concerned about her mental health…) and COMPLETELY ignored our needs. As if that wasn’t enough, when she finally got over the virus, she then became even worse. She slept for hours and hours, stayed in her bed even when she was awake, and totally failed to deliver our cookies on time. SHE DIDN’T EVEN DO CHRISTMAS!!! which is totally our favorite time of the year. Hello… Christmas trees = world’s best cat toys. How could she have failed us this way?

She said she was in a flare. Whatever.

When she was awake she worked endlessly on these socks for her cousin’s Christmas present.

Yarn Blank — The yarn for the socks was from this sock blank that she bought at a yarn festival. She made it into a ball and wouldn’t let me help even a little bit.

Knitting — She wanted to make these complicated socks for her cousin. This cousin is special… they were born two days apart and are kind of like displaced twins. This cousin once gave her a whole quilt for a present. The least she could do was to make these socks! She started knitting the first week of December. Lots of time. I looked forward to days of great knitting together.

Cat — But she was too tired to knit very long on them at a time, and can I be frank, she was pretty stupid with brain fog. Lots of mistakes. Lots of stress. She kept chasing me away while I was helping. She tried to knit in bed, which is MY place. So I ate the yarn a couple of time. If she gave me cookies in a timely manner these things wouldn’t happen.

Heel of the sock. — Her lack of energy and general stupidness was really obvious when she knitted the heels. It took her THREE HOURS to pick up those stitches to knit the afterthought heel. She started sighing and pushing me off the bed. She began to refer to the knitting project as the Turkish socks from hell. The Mother of Cats was really in trouble.

Cat and knitting. — I just kept on encouraging her. I purred a lot. I settled for fewer cookies. I even stopped eating the yarn. She was really in pitiful shape.

Unfinished socks. — By Christmas Day she had finished this much. Her cousin reminded her that Christmas continues until January 6th.

Finished socks. — Finally, finally they were done!

The Turkish Hell socks were packed up last week and mailed out. On Saturday, the last day of Christmas they arrived safely in their new home. They had better behave themselves and last for years and years; I would hate to travel all the way across the state to whack them into shape!

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

These socks, called Classic Kilim, are from the book Around the World in Knitted Socks by Stephanie van der Linden. The socks were supposed to have tassels and embroidery; that so did not happen!!Here is the info on Ravelry with more info about the book. My notes on Ravelry are here.

On December 1st I got my pneumonia vaccine even though I had been struggling a little that week. That night my youngest son became ill with complications of diabetes and was rushed to the ER . I spent the next 2 days/nights at the ICU with him. Yep. About the time my son returned to work and I moved back home I was sick; my autoimmune diseases flared while I was fighting through the viral illness. My Sjogren’s symptoms have been off the chart and crushing fatigue and brain fog appeared along with them. This week I am better and have been knitting up a storm and planning blog posts. Hopefully I’ll be online again in a couple of more days.

Happy New Year everyone!

FO Tee, a Garden Swing, and an Excited Spinning Wheel.

I know that I have been a little whiny lately. I started methotrexate a little over a month ago and the adjustment to the new medication has been challenging to say the least. This week was better. Much better. So sorry for the whining. I ~~promise~~ hope that I won’t be doing that again for a long time. Check out all the things that were accomplished this week.

Knitted Tee — I got the Clove HItch Tee finished! Here are the project notes on Ravelry.

Tee Sleeve. — Look at how cute the lace detail is on the sleeve. This yarn is a linen blend and will be cool to wear even though it is a worsted weight knit.

The whole time I was knitting this tee I worried about how big the neck opening was. As soon as it was cast off the needles I tried it on, and yep, too big. I ran a drawstring around the neckline on the inside to draw it up a little and to prevent more stretching. Neckline problem totally fixed: it fits great! The top is loose and a comfy layering piece. I’m thinking that I would like to make a second one with long sleeves using a winter yarn that will be lighter in weight. Maybe in navy blue. I plan to keep that garter stitch band on the sleeve and will continue the sleeves in stockinette below the band.

Crocheted lawn seat. — I have now crocheted the entire back of the lawn swing and am continuing on to make the seat. I draped this over the back of the swing; it’s longer than it looks in the picture.

The lawn seat is coming right along. The fabric will stretch when I sew it into place so it will be more open looking when it is done. I haven’t completely decided how to attach it to the side pieces of the frame. I’m afraid that the attachment solution won’t be very elegant, but hopefully it will be functional.

Wednesday I went out to visit a friend’s alpaca ranch (she has sheep too!!). I am consumed with jealousy. Such cool animals wearing fabulously cool fiber; she has a whole dyeing and processing operation going. I didn’t take any pictures because next week there will be a summer camp there and I get to teach kids how to spin! Ha! Stay tuned for the summer camp report. 🙂

Today I took the car to get its oil changed and battery replaced. I know that this sounds like a small thing, but I am rocking my good week and getting a lot of things done. After I got home I cleaned out the garage and packed my spinning wheel into the car because tomorrow we go to a class to learn how to spin camelid fibers.

Spinning Wheel — Look! The wheel is already strapped into the car and ready to go. It is so excited! This is its first trip out in almost a year; no more sulking in the corner for this little guy.

That’s right. I still have a bag of paco-vicuna that I am nervous about spinning. The spinning class is taught by Chris Switzer who has quite a reputation as a master spinner of these fibers in this part of the world. I am taking the paco-vicuna bag and a chunk of my alpaca fleece with me to the class to get feedback on spinning techniques for the yarn that I dream of creating. Not that I’m intimidated, but the class registration says to bring some things that I’ve made from my homespun yarn with me. I have spent an hour finding things that I’ve made; I’ve decided to only take ~~two~~ three things. Maybe three is too many? If I take two substandard items she might think it’s a fluke. If I have three, it’s pretty sure that’s the type of spinner I am. Whatever. It’s best to not overthink this. I’ll take three that I like and that will be that. I’m taking the class with a friend who likes to spin crazy lace weight yarn and it is going to be wonderful!!

I finished reading all of the bee books this week too. I feel another post coming on. Some of the books were a little bit of a chore to finish, others were just amazing. Hmmm….

Knitting in Aurora

Without a doubt, I am in a mood. I have been feeling poorly for a couple of days now (I took my methotrexate on Monday, and this week it made me sicker than last. Hope this gets better as I continue…), but I needed to pick up prescriptions from the pharmacy and to run some essential errands (the cats expect to be fed on a regular basis; obviously they are out of control!!), so I dragged myself out of bed and feeling a little dizzy and wobbly I headed out.

Here’s the deal. The Kaiser facility where I pick up my prescriptions is right across the street from the Century 16 theater where a gunman (who will remain unnamed in this post) opened fire in a packed theater of moviegoers watching a popular movie on opening night. It was almost 3 years ago today when I woke up to discover that once again Colorado was in the news for a mass shooting, and once again it was happening in my home town. (Sadly I was a resident of Littleton, Colorado at the time of the Columbine shooting). This time the theater is in the heart of my shopping district, and today as I made my rounds to pick up a library book, buy cat food and made a quick stop at the book store to check (what else) the knitting magazines I was almost always in sight of the theater.

It is pretty heart-rending if you think about it. The police drove up the lawn and over landscaping behind the theater that night to transport victims to local hospitals. They drove on the street that I used to go to Kaiser in patrol cars carrying as many wounded as they could fit into their cars. It’s hard to not think of this as the shooter’s trial is now wrapping up after 45 days, and it’s impossible to avoid the day-to-day details of the events in the courtroom. As I entered the Barnes and Noble bookstore in the shopping center I wondered if that man had come here to also check magazines.

Knitting Magazines — Here’s the knitting magazines on an upper shelf mixed in with other fiber-arts crafting magazines. I counted 12 knitting magazines.

So, I am in a mood. I don’t feel well. I spend a lot of time knitting to cope with my altered future due to some serious illnesses. I don’t want to start a debate about gun control, Second Amendment rights, mental illness, the death penalty, the available of military grade armaments through the internet, or the value of explosive rounds. I don’t want to hear that we need more guns to stay safe and that teachers should be packing in their classrooms. Don’t do it!!

I’m just wondering if the world wouldn’t be a better place if bookstores carried a dozen hard to find gun magazines on their shelves, and there were 30 knitting magazines located at the level of children for them to look through. Wouldn’t it be nice if we all felt safe and dreamed of creating nice cushy scarfs, sweaters and mittens that would be beautiful and useful. That knitting was seen as an important meditative activity as wonderful as yoga, jogging, or any of the other stress-busters out there. That the economic power of knitting and other crafting venues drove a huge industry of creative pursuits valued by a large part of the population.

What does this say about us as a people that this isn’t the case?

Starlight, a Joker and OMG: Empathy Cards!!

Wow. It has been really, really rainy here. I had three inches of rain in the back yard bucket (my very-low tech rain gauge) before there was a downpour with hail this afternoon. Needless to say I have been making good progress on my knitting this week. Here’s what has been going on.

I got the Sidere Shawl by Hilary Smith Callis finally done and blocked. (Yep. There was another battle with the cats during blocking. This time they totally outdid themselves. One of them THREW UP on the shawl and then tried to bury the mess by raking damp shawl parts over the evidence. I love my cats. I really, really do…) I think that it turned out nice.

Info about the stitch — The shawl used a new stitch to me called Starlight Stitch (Sidere is Latin for starlight) that really made it have strips of interesting texture.

Shawl in Tree — Here is the finished shawl hanging displayed by my ever helpful ash tree. The rows of Starlight stitch open to one side of the asymmetrical shawl. Here are the project notes on Ravelry.

As I was finishing up the shawl I realized that it was now May. Time for another sock!! (As one of my New Year’s resolutions this year I have been knitting a new sock each month using a pattern from one of my many, many sock books and some yarn from the stash. So far I have been good and only used yarn from the stash. Notice I haven’t mentioned whether the stash is growing or getting smaller at this point…) Monday I dug through the sock yarn and here is what I settled on for the May 2015 sock:

This sock is Milfoil by Rachel Coopey from hr book CoopKnits Socks. The yarn is Madelinetosh Sock in the colorway Grenadine. — This sock is Milfoil by Rachel Coopey from her book CoopKnits Socks. The yarn is Madelinetosh Sock Yarn in the colorway Grenadine. Since the sock is divided into two distinct halves with different patterns I decided to knit it using two small cable needles instead of my usual (and beloved) square double pointed needles.

Now that the Sidere Shawl is done I jumped right into knitting the first Joker and the Thief shawl by Melanie Berg. Woohoo!! This one is a keeper for sure, and is lots of fun to knit. Here’s where I am on it right now. The shawl and the sock are knitting up fast, which is a good thing as I have an awful lot of knitting going on.

This week has been one of reflection for me as I knitted along in the gloomy rainy days. Tuesday was the anniversary of my mom’s death from ovarian cancer. What a difficult time that was for all of us in the family. Now I am exactly as old as my mom was at that time, and I also am struggling with a serious condition. I’m noticing again some of the things that we dealt with during my mom’s illness: friends and family saying hurtful things, distancing themselves, and trying to make the illness seem trivial. If anything is said at all, it is so superficial or cliche that it reveals a total disengagement. What is up with that? It’s almost as if they are lacking in… empathy.

OMG!! Guess what hit the market this week? Empathy cards! The exact cards that call to the heart of every person struggling with a serious illness, and the life preserver for every person who just doesn’t quite know what to do or say. I can relate to these cards totally! These cards are created by Emily McDowell to fill that huge gap that too many of us are aware of where people of good heart and intentions struggle to acknowledge unhappy truths (some of us will never be old…) as they try to express their concern and support. Here’s what I’m talking about:

See what I’m talking about? One visitor told my mother that her terminal illness was a “remarkable opportunity” as it gave her the chance to plan the end of her life. I never allowed that person to come visit her again. People who say everything happens for a reason are smugly assuming that somehow your illness was something that you deserved (and they didn’t), or that it will somehow make you a better person. That is just wrong, folks.

Lemon Card — This happened to me! Not nice!

I bet you want some of these cards too. Here’s Emily McDowell’s blog about these cards and her store where you can buy your own. Emily is a cancer survivor and definitely understands the problem and the need for these simple vehicles to scaffold caring and meaningful communication of support for others dealing with a hard time. I know that people do care. We all need help sometimes to know how to show others how we feel.

So what other empathy cards should there be? I personally am tired of people telling me that they are glad that I’m so much better. (Say what??! I look better right now because I’m between naps and between crisis…) or that they will pray for me (Thanks! I appreciate that! What I really need, however, is someone who is willing to do some grocery shopping for me or even take me to my next major medical testing appointment of the gastroenterology torture chamber variety…) What about the times when people tell you that at least you don’t have __________ (some other disease that sounds worse to them), or ask if you have your will made? There has to be a great card using these comments!

Lots to think about while knitting on a rainy day.