Wow. How quickly time flies. It has now been two and a half years since I was diagnosed with the autoimmune disease limited systemic sclerosis (AKA scleroderma), and I joined the rare disease club. When last I reported on my progress I was at the end of a tough year; lung disease, oxygen, a referral to palliative care, gastroparesis, and constant pain. I was having trouble walking and my stomach was really acting up; I was losing weight at the rate of a pound a week. Ugh. I was somewhat upbeat by the end of the second year since I was off oxygen, but still, things weren’t really all that great.
What a difference six months can make. A change in medication made my Raynaud’s much easier to handle. I started doing yoga (carefully) a few months ago and added tart cherry extract as an anti-inflammatory that I can tolerate better than traditional NSAIDs. I bought shoes that felt better on my feet (Haflinger clogs) and got serious with stretching exercises for the plantar fasciitis I developed due to tightening on the bottoms of my feet. I switched to a gastroparesis diet that is mostly easy-to-digest, low fiber foods (got to love pasta and yogurt to do this one…) and began to add some blended fruits and veggies. My weight loss stopped and I started to gain back some weight. My skin has started to loosen up on my right arm (scleroderma literally means “hard skin” as the most obvious symptom is thick, hard skin that develops as the result of systemic scarring), which is pretty darn exciting! Over the last six months my energy has been slowly coming up and I have been managing with less pain; I can even walk normally! I’m breathing better and I rarely need to use the rescue inhaler. There was a Sjogren’s flare, but still, things are better.
I just finished making the latest round of testing and doctor visits, and I have to say, it is pretty exciting to visit with happy smiling doctors. My pulmonologist was almost giddy! My lungs and heart have maintained (scleroderma damage tends to be forever…) with almost no new damage; I am right at the edge of trouble, but I’m not there yet. I have good blood work, and even had the first NORMAL kidney function test in over 5 years. My red blood cell count is back down in normal range, and my muscle strength has improved so much I can now easily push shopping carts. It seems that the increased dosage of immunosuppressants has turned the tide and I am stable. STABLE!! What a wonderful word that is.
I will continue with all of my current drugs for now and there will be more testing in a year, but it is clear that I have definitely pulled up from the nose dive that they through I was in a year ago.
Hi. If you’ve been following my blog for very long you already know that I am an out-of-control knitter owned by a self-absorbed and bossy cat named MacKenzie. You have probably detected that I am a science-oriented geek, an obsessive reader, and a casual gardener who loves her roses. You may have also realized that I have some serious and chronic health problems that I am trying to keep from taking over my life. I’ve been pretty up-front about the more serious of my autoimmune duo, systemic sclerosis (scleroderma), but I hardly ever mention the lesser of the two, Sjogren’s Syndrome. After all, since the diagnosis came in, all of my doctors (I have a six-pack of docs…) tend to focus on the scleroderma, so I almost forget that I also have Sjogren’s.
Except for this: of the two autoimmune conditions, it is the Sjogren’s that has pretty much taken over my life in spite of my efforts to keep control. Since April is Sjogren’s Awareness Month, I decided that I would share with all of you some information about this disease and how it has impacted me.
But first, the Fade!! I’m cranking out another Find Your Fade shawl that I hope to get done before the end of the month. Look at these colors! Look at how great this shawl is going to be! Color me happy! My Ravelry project notes are here.
The weather has been nice this week so the cats have moved outside to bug hunt and I have moved into major knitting and house cleaning mode. OK, there has been more knitting. It’s important to have priorities…
Back to the Sjogren’s Syndrome. I know that you are just dying to know more about this little know and hard to spell disease. Sjogren’s isn’t as rare a disease as my bad-boy scleroderma (about 4 million Americans have it), and it isn’t usually life-threatening, but it is still serious and exceptionally life altering. Check out this symptom chart. This is one crazy-ass autoimmune disease; basically my immune system is attacking all of my moisture producing cells. That doesn’t sound all that bad, does it? As it turns out, the impact of this damage affects an awful lot of my body’s ability to function properly, and for this reason Sjogren’s is considered to be a systemic condition. Its most obvious feature is extreme dryness. Let’s take a little walk around my house as I explain this to you.
Now for the things that I couldn’t take picture of: fatigue, neuropathy, and concentration/memory problems. The fatigue that comes with Sjogren’s is not the usual “feeling tired” stuff. This is true crushing fatigue that makes me feel buzzy, numb and like I’m walking through concrete. The neuropathy means that I have feet/hands that are always falling asleep; more trouble walking. Then there is the memory stuff. When I’m in a flare all kind of crazy things can happen. I got lost on the freeway once; now I always use the GPS to give me driving directions. I have gone out to run an errand and then couldn’t remember where I was going. I have big problems with vocabulary recall, and I forget things like my phone number at the most embarrassing moments. I lose my ability to read because I can’t concentrate…
Good grief, I pretty much have my life arranged around my Sjogren’s needs. I thought that MacKenzie was running the show around here, but it looks like he needs to take a back seat to Sjogren’s.
Which brings me to the good things for which I am grateful. Most people with scleroderma/Sjogren’s struggle with anxiety and/or depression. I do not. I think that I am so very lucky in my wonderful, supportive friends and my son. I am lucky to have good neighbors, health insurance, and a pension that meets all my needs. I am lucky to have cats that pile on and purr through all the sad times. I am lucky to have the immensely meditative and calming art of knitting to carry me through each and every flare of my disease.
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.
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.
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.
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.
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.
Okay, this is a rant. This rant is so long and complicated, with so many connections to other topics, that I have considered that I should perhaps launch another blog just to deal with it. Or maybe create an online course for people with complex autoimmune diseases. Something. Because I finally have snapped for sure.
It happened while I was attending my monthly Scleroderma Support group in July. I go to these meetings because I need to talk to people about my illness, become educated about treatments and coping strategies, and to get, you know, support! I want to flock with my peeps!! Usually in these meetings there are introductions, a little sharing, nice snacks, and a presentation by a guest speaker.
This is the problem. The speakers who have been coming are often involved in alternative treatment strategies. As in alternative medicine. As in flat out pseudoscience masquerading as legitimate methods of treatment for our complex health conditions. These speakers have been trained in their “method” and faithfully parrot back what they were told in their training. They have little actual knowledge of human physiology, biology, disease, or science. They are connected to a product or system that they want to sell to us to help us “stay healthy”. They especially tell us that they can help us have “healthy” immune systems and/or take away our pain. Since I am in pain because my immune system is misbehaving it’s hard to not find their messages appealing.
Except… I was a biology teacher. I used to work in a research lab. I know science as a logical process with rules, and this information is so outrageous it causes me to wiggle around in my chair, bite my tongue, and often whip out my cell phone to fact check.
Me: Google, please tell me if Leaky Gut is a real thing?
Google: Are you crazy? Of course not.
Me: That’s what I thought…
But evidently I absolutely, positively need to take this essential oil to protect me from leaky gut. Or the toxins will leak out though the holes in my intestines. This is the cause of many complex illnesses. Research? We don’t need no stinking research. We have testimonials!!
How about the day I learned that I need to massage my hands and feet at specific pressure points to clean the toxins out of my liver, pancreas and other parts of my body? Really. I was informed that the problem is that the cells of my body get dehydrated, will form tough protective barriers, and the fascia then can’t move fluids throughout the body. This was such a garbled version of reality it was practically science salad.
Me: Google, please tell me exactly what fascia is.
Google: Sure. Fascia is the thin, tough barrier around muscles and organs. It is part of your connective system and made of collagen.
Me: Google, just to be sure, it doesn’t have anything to do with fluid transport?
Google. No, dumb ass. That would be the lymph system.
Me: Google, that’s what I thought. No need to cop an attitude with me, you wouldn’t believe what I’m dealing with here.
As if all this fact checking wasn’t exhausting enough, there is also a hint of “anti-science” in the room. Several other patients have become convinced that we need to stop taking our meds as they have unacceptable side effects. It is better, they argue, to control our disease with diet, essential oils and supplements. OMG! It isn’t possible to google fast enough to keep up with this stuff!
Me: Google, what is this alkaline diet all about?
Me: Google, is dairy inflammatory?
Me: Google, do I need to take massive doses of probiotics every day, or can I just eat yogurt? This speaker is telling me I have to buy their product since I can’t eat dairy anymore…
Me: Google, how quickly do bacteria divide? Every 20 minutes? So I don’t need a massive dose?
Me: Google, is there any research showing a positive benefit of essential oils in systemic sclerosis?
While loading up on gluten free snacks at the break I finally snapped and asked the group facilitator if she thought it would be appropriate to let people advocate going off their meds and using essential oils to treat their conditions if this was a cancer support group?
“Well, no…”, she replied. “But that’s cancer.”
I just looked back at her until I saw something click in her brain, and then I left. I’m done.
Since then I have been fussing around about why this is happening. I understand that this is a tough disease (in more than one way), but how awful it is that there is so much misinformation out there that people don’t know what is accurate, and what isn’t. Desperate people will clutch at anything that gives them hope. Sometimes these things are based in sound logic, reason and science (stem cell transplants), and sometimes they are not (amber beads for pain relief). Obviously people need to know more about the nature of science, basic physiology, immunology, cell biology, and how the medications prescribed by their doctors work. They need to know their Star Trek!!
So, I feel a lot better after finishing up my rant, but I still think that I may need to launch a mini-series of posts relating to this. I mean, there are all those pseudoscience cures to debunk. All that biology to share. All those Star Trek quotes.
Stay tuned. If I start the new blog, I’ll let you all know where it is. Otherwise, a lot of my knitting friends are going to be exposed to some biology. Feel free to let me know how you feel about that.J
Oh, I am totally locked into Olympic viewing with knitting on the side. Last week was swimming, beach volleyball, woman’s gymnastics, and my fabulous tropical colored Antarktis shawl. I cast off Friday night and here she is:
Well, as soon as I was done with this shawl I cast on and started the next. I had put 7 new shawls into my Ravelry queue a couple of weeks ago, so I headed on over to check out the list. I fussed around with Rainbow Warrior for a while, but decided that the two colors that I had selected really didn’t go together as well as I thought they did. Fine. Back to the stash!! In the meantime, I did have the perfect colors to start a Random Act of Color, so that is what happened.
So, I am still binge watching and knitting like crazy. The cats stayed out most of the day so there was a lot of progress. Hey, I might be able to knock this one off too before Rio ends on me.
Okay, July was a month that I am glad to see go out the door. I did have some great moments in the month; my sister and niece came to visit, I worked at the summer camp at Alta Vida Alpacas, and I spun my friend Deb’s beloved Jake dog into yarn. Good highlights!
On the flip side, I lost a war with an invasive weed in one of my gardens and my autoimmune conditions went into high gear. For the first time ever I was unable to sleep due to pain (what is up with my joints and muscles?!), gastritis returned after being good for two years, my Sjogren’s flared (!!) and my lips turned blue. Ugh. I blame the heat and the sun.
Now it is August, I’m on oxygen full time, meds have been changed, and I’m in need of a little cheer. Shawls, I need shawls!! The way things are going right now I want to be wrapped in color. Shawls will give me color, texture, lots of mindless knitting, and defiance in the face of medical adversity. I hit the stash, printed patterns from Ravelry, made my shopping list and when I went on the knitting road trip with my peeps last week I scored everything I needed. May I present to you, Seven Happy Shawls…
How is this for cheerful defiance! I was really torn about which one to start on, but I’m leaning towards Antarktis.
More defiance. This should keep me going in good cheer until the end of the year. I’m torn about the order to knit them; they are all just too yummy for words.
All right August, I am ready for you. Let’s go!!
My Ravelry queue can be located here if you would like more information about these patterns and the yarns that I have selected.
I downloaded Fotor for Windows to make some photo collages instead of posting a million pictures. What do you think? I think that you can also make stuff online. It was free, free, free!!
A couple weeks ago I woke up to a shock in the email box: That Girl at (Not) Another Lupus Blog nominated me for the Encouraging Thunder award, which is meant to recognize blogs that are inspiring and encouraging to their readers. Say, what? I have to say that of the many blogs and comments out there, one of the best, funniest, and uplifting to me is the one that That Girl writes. She is dealing with serious autoimmune diseases that continually derail her life, and she makes me laugh out loud while she relates the latest adventure/disaster. Check out this post about a particularly bad time waiting for her meds to arrive in the mail and you’ll see what I mean. Her blog empowers me to face down whatever may come my way and to deal with my health adventures with grace and humor. She does inspire me. She makes me laugh. She says nice things about my knitting. If ever there was a person who is encouraging, it is her.
I am stunned that she passed the award on to me too. Wow. She is a tough act to follow. It is also kind of weird to think that somehow, typing out into the void about my life with cats, yarn and scleroderma, things that I think about and create connect with other people. Thank you That Girl for thinking of me. It’s an honor to accept and pass the torch (thunderbolt) on to others.
So, this is how the award works: I am supposed to talk about why I blog. That Girl used the opportunity in her post to re-examine her purpose in blogging. Here is her wonderful and reflective post. As I read her thoughts it pushed me into some reflection of my own. There has been a lot of water under the bridge since the start of the blog, and I guess as I changed over time I didn’t really think about this too much.
Here’s the deal: I started to blog because I was going through a tough time and I was isolated. My family was in crisis. I had just retired from the best job in the whole world and was in grief over the loss of my biology classroom. The transition was especially hard since I was going from an adrenalin-charged, immensely creative and social day (hello: 150 high school kiddos a day! Did I mention that it was a lab class…) to one at home with yarn and the cats. I was already sick but not yet diagnosed; it was hard to know if the disconnected symptoms, fatigue, and pain were real or me just feeling sorry for myself. I began to pour my creative energies into knitting and writing; I started the blog to put my transition into retirement out into the digital world; maybe there would be some people who shared my interests. Then the diagnosis of systemic sclerosis (and Sjogren’s) came in and I decided to share some of that. What a wonderful idea it was. Now people reach back to me and make me stronger. Thank you to everyone who has read this far down the post. You are the reason why I blog. You make me more creative (and brave) as you share your crafting adventures, your cats/dogs, your gardens, disasters, and medical adventures.
Thank you again That Girl. You made me think about all of this and I think that I’m ready to blog on!
And now it’s time for to pay it forward. Here are some bloggers who given me inspiration and encouraged me to knit on no matter what.
Sharon at Creativity and Family. This woman is the motherlode of creative inspiration. I don’t think that there is a craft she doesn’t take on. She has a button collection!! There are yummy recipes on occasion, and her kids seem amazing. They have monthly presents. Oh, yeah, she also has lupus and some physical limitations but you have to be very alert to pick up on this because she absolutely refuses to let it define her. She is kind of my hero! Check her out.
Phil at The Twisted Yarn. OK, I’m just going to come out and say it: she totally intimidates me. She has such a fun and unique voice. She takes us to all things yarn and on trips through the countryside with the toddler twinage. She creates amazing projects that I never would have thought of like a Mandala and a knitted pigeon. Reading her posts made me think about my “voice”, but in the presence of quirky greatness it is best to not try to compete.
Lisa at Comfortable in Thick Skin. What can I say? She is a scleroderma warrior. She makes me think that I should be more brave and proactive with everything in my life.
Gaye at Confessions of a YarnHo. She just moved the blog into a new home that is a beautiful professional site. She loves yarn, she is full of joy, she will make your day. The end of every post is “Knit on my fiber friends… knit on” How encouraging can you be.
If I nominated you and you choose to accept, here are the fiddly rules:
When you get this award, you can:
Post it and the logo on your blog
Pay it forward by nominating others
Abuse or misuse the logo
Claim the logo is your own
If you receive the award you should:
Give thanks via comments and likes in the blog of the person nominating you
Mention the person who nominated you in your award blog
Discuss your purpose in blogging in your award blog
That’s all folks. If you are reading this That Girl, thanks for the award, and thanks even more for your presence in my blogging life.