Tag: Sjogren’s Symdrome

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 Thrum Adventure

I started this year with a commitment to reduce the size of my stash and a fuzzy notion of attacking some knitting projects that I had never done before. I thought that I would like to learn how to do double knitting. Maybe some herringbone stitch. Definitely, thrummed mitts.

Mitts and cat.
It was cold this weekend so I worked steadily all day Sunday on the thrummed mitts and got them done. This is my son’s cat Daxter checking them out.

I was really motivated to knit some warmer mittens, and I’ve heard that thrummed mittens provide serious warmth. They just look so cool, they can felt and mold themselves to fit hands well, and then there is the insulation factor. My Raynaud’s has gotten worse over the last year and I have some concerns about digital ulcers. Nope. I don’t want one of those!! I need to be able to function in the cold without taking risks with my fingers.

Cat and roving.
My BKB Deb gave me this merino roving from Malibrigo. Perfect for thrummed mitts!

I found a promising pattern online, Warm Paws by Carol Ullmann, dug out some worsted weight yarn from the stash, and watched videos on YouTube to learn about knitting in thrums. Pretty straightforward, and the pattern gave excellent instructions too.

Loop of fiber.
The staple length of the merino in the roving was pretty long: 3″-4″. It was also pretty darn soft and lofty. I pulled off little strips about 6″ long and then folded them into loops.
Making a thrum.
Each loop was pinched in the middle to make a bow, and then twisted to hold it together. I quickly discovered that my thrums needed more handling to keep them from shedding on the mitten, so I added a little water to the center of the loop (where my fingers are gripping it) and then rubbed it briskly with a finger on the back of my hand or wrist to make the wool felt in the middle. Hey, I have scleroderma, and I can’t twist the loop between my fingers, but that would probably work for another person. 🙂
Thrums
The prepared thrums were pretty hardy once the middles were felted and I could make several ahead of time. In this shot you can see the felted middle in each thrum.
Inside of the mitt.
Once knitted into the mitt the loopy thrums stayed in place and behaved themselves.

The finished mitts are just fantastic and fit like a dream. I wore them as I drove home from my son’s last night in the cold and snow; my hands stayed warm and for the first time in a long while I didn’t have a Raynaud’s attack during the drive. I’m still researching battery operated warm mittens, but in the meantime these thrummed mitts are going to be a game changer for me. The way that merino felted so quickly I figure that I can just stuff more loops in to increase the insulation as needed. Here are my project notes.

So, how am I doing on my New Year’s resolutions? I can check thrummed knitting off my list, and with this project I have now removed 14 skeins of yarn from the stash. I’m pretty sure I will make the goal of reducing the stash by 50 skeins this year. Of course, not every project is quick to complete. Check out how I’m doing on the fabulous, colorful mitts (that would make a unicorn cry with envy…) that I’m making for my knitworthy niece…

Mitts
Those bobbles and braids are slowing me down, but look at how cool they are going to be!! Here are these project notes.

Happy knitting everyone, and I do hope that the weather is behaving for you.

The Scleroderma Chronicles: Invisible (Star) Wars

I’m a big fan of the movie Star Wars. Seriously. I remember the first time that I saw this movie; we stood in line for hours, laughed at the droids, were amazed by the special effects, wished we had the Force, held our breath as the tension at the end of the movie mounted, and cheered wildly when the Death Star blew up. Over the next year we watched the movie 13 times in the theater, memorized the sound tract, and to this day I hear snippets of dialogue echoing in my mind…

Star WarsLike this line said by the droid C-3PO to his buddy R2-D2 as they escaped from their badly damaged and captured ship to carry out a secret mission as directed by Princess Leia:  “That’s funny, the damage doesn’t look that bad from out here.”

Author
Bundled up in wool and staying warm. You can’t see my stage 3 kidney disease, interstitial lung disease, struggling gastric and intestinal organs, burning muscles, painful joints, brain fog, and my truly astonishing fatigue.

That’s me. Badly damaged on the inside, not that bad on the outside.  The curse of all people who have an invisible illness. People often say, when they learn about my illness, something along the lines of… “Well, you look great!” It’s nice to hear, but it also suggests that I’m not really that sick.  I can’t help but feel that they think that I am an attention-seeking hypochondriac. Sigh.

Raynaud's
You have to admit, the visible symptoms are really subtle. It can be as little as lost circulation in a finger: Raynaud’s phenomenon. What can’t be seen is that I’m also experiencing circulation loss in my lungs, kidneys, brain and other organs.
Edema on arm.
A poor dietary decision can hit me hard: dizziness, muscle pain and edema in my arms. I ate cheese enchiladas at my favorite restaurant this time.

It is amazing, really. How can the damage not look that bad from out here? I struggle for air. I often lack the energy to get through basic tasks. Pain stalks me waiting for a poor decision on my part that will give it an opening.  An incoming weather front pushes me over a cliff. Holidays can be the worst as I struggle to manage my energy resources, diet and exposure to cold. I can get through the Christmas dinner okay, but the next two days are spent in bed sleeping myself back to functionality.

And yet, I’m starting the New Year feeling pretty darn chipper, well… as chipper as you can after a 12 hour nap and a strong latte to launch myself into motion. See, I can get back to functionality. I’m on great drugs and I have wonderful doctors. My latest round of medical testing shows that I am tolerating my drugs well, and my disease progression has virtually ground to a halt. I am making some gains. I spend a lot of time managing my symptoms and hoarding energy resources, but I am not getting worse. Some really scary words on my chart have gone away over the last year: chronic respiratory failure, pulmonary arterial hypertension, and severe kidney disease are no longer there. I have wonderful friends and supportive family members. I am still independent and can get out to social events.

MacKenzie the cat.
I have the world’s bossiest cat to tend to me…
Rose.
and my indoor roses are blooming.

The rose bush is also struggling and covered with mildew. Sigh. It’s like a metaphor for my life. Bloom where you can, and pretend that all this other damage isn’t happening over there… Jedi mind tricks can be useful when dealing with implacable enemies like scleroderma and mildew.

Use the Force! I hear in my mind. If you know the movie Star Wars and the other movies in the series, it is a tale of heroic underdogs battling against great and evil foes, desperate times, hope and change.

I don’t have a light saber, but I have knitting needles.

I don’t have the Force (an invisible energy field created by all living things), but I have an online and real network of people and other living things that connect to me and support me. I have science and time on my side: new drugs are on the way and some of them are in new rounds of clinical trials. Remember the movie poster? A New Hope. Yep. Every year brings me a new edition of hope.

My illness is mostly invisible. The battle is real. Bring it on, 2019, I am ready for you!

Cat

Footnote: Perhaps you are wondering… whatever does she have? I was diagnosed with Limited Systemic Sclerosis and Sjogren’s Syndrome in 2014, and those two conditions carry with them a host of complicating conditions such as Raynaud’s, colitis, gastroparesis, interstitial lung disease, kidney disease, heart disease, oh my lord, and a partridge in a pear tree. In 2016 I was referred to palliative care and told to make final plans; Myfortic (CellCept) saved the day and I was discharged from palliative care a few months later. In 2018 my rheumatologist added fibromyalgia to the list and there is an ongoing discussion about dermatomyositis. Why do these autoimmune diseases throw parties and invite all of their friends?  It’s like the bar at Mos Eisley Spaceport with all the strange aliens.  As Obi-Wan tells Luke, “You will never find a more wretched hive of scum and villainy. We must be cautious.” I don’t have a blaster, but I think that in this case the drug Myfortic will do the job!

The Scleroderma Chronicles: The Fourth Year Report

Wow. It is hard to believe it, but it has been more than 4 years since my diagnosis: Limited systemic sclerosis (scleroderma) and Sjogren’s disease. Time just flies when you are having fun, right? Seriously, I have been reflecting for a few weeks about what to write to mark the end of the fourth year. Should I write about how strange a dichotomy scleroderma is: people tell me that I look good, but what they can’t see is how my entire life is organized around accommodating my illnesses. Maybe I should write about how I have developed a Zen-like patience as I hit each roadblock; why worry about things you can’t change when in the course of time all will become more clear? Maybe I should talk about growth. Personal growth in the face of a heartless disease as I came to terms with my own ability to become an active member of my treatment team and to assert myself in the face of medical experts.

Done! Personal growth it is!

Author wearing an hand knit shawl.
Even in the worst of times it is possible to create items of beauty that provide comfort and are therapeutic. I knit this shawl last spring while my doctors were determining if I had developed potentially fatal complications of systemic sclerosis: pulmonary hypertension or heart failure were the candidates. There was nothing to do but to knit on as I waited for test results.

When I was first diagnosed I really did go through a time of sadness and grief.  It just came in waves for me as I began to figure out that systemic sclerosis and Sjogren’s are both incurable and difficult to manage. Then I realized that they might be disabling. Then it finally dawned on me that they might be fatal.  To my horror I discovered that the 10-year survival rate was 60%. There would never, ever, be a “better”, I thought. The best I can hope for is becoming stable and maybe getting some softening of my skin.

The great unknowns of scleroderma really wore me down. Doctors kind of dodged my questions or referred me to another doctor on the team. I was afraid, and I didn’t want to make too much of a fuss because I was dependent on the medical specialists and I didn’t want to alienate them. I was struggling, weak, and truly a victim of my disease.

Flash forward 4 years. Things have changed. I began to keep a food log and journal and I worked out dietary changes that helped me. I participated in a self-management study, and I attended a couple of conferences. I remembered that I was trained to be a scientist, and I employed logic and reason in my scleroderma life. I spent a lot of time with Doctor Google and reading research papers at PubMed. I fired a rheumatologist, found another one, and convinced my primary care physician to meet with me regularly and to filter all the test results and doctors notes into a cohesive action plan. My care improved as I communicated better with my doctors and they developed a good sense of me and the other doctors on the team. My power over scleroderma grew as I faced down crisis after crisis. I may not conquer this disease, but by golly I will be brave and give it a good whacking!

Here’s an example of what I’m talking about. I have to get routine blood testing to make sure that I am tolerating the drugs that I’m on well. I went for the blood draw two weeks ago, and a couple of days later I got a phone call. There was a problem: a liver enzyme was suddenly elevated above normal ranges. I was told to head on over to urgent care to get checked out. I’m a compliant patient, so that is what I did. This is what happened when I met with the doctor in urgent care.

Doc: You’re fine. It’s just a bad test result.

Me: I have been experiencing worse (crushing) fatigue for the last two weeks as I’ve been fighting a cold and my muscle pain is pretty bad. I have been staying in bed two days recovering for every day up.

Doc: I think that we should put you on prednisone.

Me: I am very nervous about that. I’m already pretty immunosuppressed, and my pulmonologist has specifically told me to refuse steroids if I hit the ER.

Doc: Then we should start you on Cymbalta for the fibromyalgia pain.

Me: That is a drug that I’ve seen advertised that seems to have a lot of side effects. I just came through a rough patch because I was overmedicated this spring, and I’m nervous about adding another drug due to possible kidney or liver complications.

Doc: Can I at least offer you some antidepressants since you say you have trouble getting out of bed?

Me: I have fatigue not depression. It’s part of my illness.

Doc: Most chronically ill people have depression…

Me: Yep. I’ve dealt with anxiety and depression in the past. This isn’t depression.

Doc: But you will feel better.

Me: Hey, I’m not here seeking help with my illness this afternoon. I got sent here by rheumatology because of a high liver enzyme result, which you feel we should ignore, and I have chronic kidney disease. You want to prescribe a drug that will be cleared by one of those two organs? I’m not comfortable with any more medications without talking to my other doctors first. (I start edging towards the door to escape this frustrated pill pusher… maybe he just is excited to have a patient with a rare disease and wants to contribute, but I am out of here!)

Seriously, I do feel like I am living in a soap opera half the time that is being directed by my bossy cat. A soap opera staring yarn, of course!

Cat being petted.
But he is also a great source of comfort. Here he is hanging out while I was knitting the shawl that I’m wearing in my picture.

That little episode put me back into bed for another day, but I was strong, I felt informed about my illnesses, and I didn’t allow a strange doctor who was dismissive of test results to prescribe me new medications. I have grown. My thinking about what is acceptable medical care has crystalized, and I feel empowered. I will talk about these drugs with my current team, and there will be a consensus decision before I start anything new.

Over the weekend I decided to double my dose of krill oil and to eat a banana every single day. 10 days later I am over the cold, I feel much better, my muscle pain is almost gone, and it seems I am through the flare. Yippee!

So, four years into this ugly disease where am I at? I am stable! The drugs that I am on have greatly increased survival rates for systemic sclerosis patients. My skin has softened some and I have pretty good function. My Raynaud’s is well controlled. My lungs, heart and kidneys have improved and my hypertension has vanished. My GI tract continues to rule my life, but I have gotten better control with a careful diet. Fatigue and pain stalk me continually, but I was thrilled to hear this week that my eyes have also improved since my ophthalmologist started me on krill oil. Hug a krill, everyone!

I have grown, and I am stronger for it. There will be many more adventures and bumps along the scleroderma road, but I am good. My priorities have shifted, and my values have clarified. I value the small things,  have lost interest in making money, and budget my time ruthlessly. Scleroderma as a personal growth plan. Who knew?

Tomorrow I go in for the repeat blood tests to see if that enzyme is now back into normal ranges.

Whatever happens, I am good.

The Scleroderma Chronicles: July Report

If there is one true thing about scleroderma, it is that it never stays the same. I think of it like the weather or road conditions; as soon as you think you’ve figured out what to wear or the best route to drive to work, things change.  If you are dealing with scleroderma in your life, you just learn to roll with the punches. One day you feel fine, and the next one you have brain fog, your knees won’t bend, and gastritis has come to call. One night my hair just started falling out and strands began snowing down onto my shoulders and arms. I didn’t know if I should laugh or cry…

Ugh. This is scleroderma. Bad days come and go, plans shift, and life goes on.

FitBit
Look at what I bought!

Here’s the deal: I’m doing much better! I’m having a lot of good days!! After months of struggling my doctors and I realized that I needed to go off some of my meds because I was getting much better! My lung volume has increased, my heart is looking normal, and my blood pressure is down. Bam! Time to start getting some exercise, don’t you think? I bought a Fitbit and slowly began to increase my daily steps until I could do 5,000 steps every day. Then I began to increase my active minutes and now, at the end of July, I am logging 3 days of exercise a week. This is huge, huge, huge!! Yay, Fitbit!!

Banana smoothie
I’m drinking a banana/yoghurt smoothie every day now.

If you slogged through any of my June posts (Science and the Scleroderma Girl) you know that I maintain a log of my symptoms, diet, and other data that occurs to me. (Yep. Weather fronts do make it harder for me to breathe. Who would have suspected that! Thank you log book!) This month I added bananas to my diet to see if they would help reduce muscle pain. I think they’re helping, and getting exercise probably helps too. Yay, bananas!

Castor oil.
I bought this to use in my eyes after my ophthalmologist suggested that I try it to help with my Sjogren’s symptoms. Kind of freaked me out as I was taught as a child that caster beans were poisonous…

When I bought this oil on Amazon I noticed in the comments by other customers that they used it on their scalps to help hair grow. Who knew? Maybe that is a thing, I thought. I checked in the scleroderma online forums and decided to oil my scalp once a week. Now, at the end of July, I am happy to report that my hair seems to be growing back. Yay, castor oil!!

Today was the last day of July. It was a pretty good month for me and my scleroderma. There were some definite bumps during the month, but over all the patient scientist approach to managing my trio of autoimmune diseases is paying off for me. Exercise, bananas, and castor oil were big positives for the month. The negatives were discovering that I can’t have any sunshine on my skin, and I absolutely can’t cut down on the stomach acid reducer med. Oh, well, even negative results are good to know.

Wild bunny.
This bunny has taken to sleeping in my front flower bed, but isn’t eating any of my flowers. How positive can you get?

Yesterday I bought a new data notebook. I have some ideas about some new stuff to experiment with…

Science and the Scleroderma Girl rides again.

Bring it on, August!

Goodbye “Science and the Scleroderma Girl”… I’m Heading Back to the Garden

Today is World Scleroderma Day. Gosh, there should be a huge post today that pulls together my whole monthly effort… nope. That sounds just exhausting, doesn’t it. How about we just head out to my garden to see what’s up. After that I can show you the big picture on what I’ve been doing all month in “Science and the Scleroderma Girl”.

Getting into the garden has been difficult for me since the sun and I are not friends. Last week I went out for a couple of hours to weed in the morning in the shade, and yep… I developed a rash on my arms and then the flare arrived. I was holed up for days getting over that little misadventure. After I  recovered I tried out weeding after dark. Gosh, I’ve had more fun moping floors. It just isn’t the same if you can’t actual see what you are doing. I wonder why that is?

Arm
But look at what I scored today while I was out shopping!! Do you see that the pattern is teal colored butterfly wings? How more appropriate for World Scleroderma Day can you get?
Sun protection!
Do you see what is written on this arm? This is a outfit designed to provide full sun protection for people playing in the surf. It is cool, wicks moisture, and will protect me from the sun. This is exactly what I need!
Jacket
Check out the whole top. This plus a hat should set me up for morning gardening, don’t you think?

There are leggings too to provide complete sunblock for the surf enthusiast, but that probably is more than I need to tend to the roses. I usually get wet while I’m watering in the evenings, and once again this baby should handle it fine. I am so set up for the rest of the summer!

Let’s see what is still alive in the garden after a week of amazing, blistering heat. Yesterday it was 105°F; these plants are no longer happy.

Purple flowers
The flowers in the tub on the back porch made it…
Veronica flowers
So did this Veronica. I’ve been transplanting this into several flower beds since it does so well.
Strawberries
Even the strawberry plants are producing well. Look at the berries that I had Tuesday afternoon. I decided to wait until Wed morning to pick them…
Bare strawberry plant
Unfortunately a squirrel beat me to them. This is all that was left, and I’m sure that he left this half eaten berry just to taunt me!

This weekend will be cooler, and I gave all the plants a good watering this evening so that they will recover over the next few days. Poor plants. Life has been tough for the last couple of weeks: heavy rain for a week followed by triple digit temperatures and blazing sunlight.

Now that we are leaving the garden here is my Scleroderma Month of June:

What I didn’t put into this was a lot of actual information about what scleroderma is. Oops. This post that I wrote for Rare Disease Day should cover that glaring omission.

So, this is World Scleroderma Day. All over the world people have posted the pictures of their smiles in an effort to make an invisible, but pretty darn serious, disease have a face. My smiling face is above: a little crooked these days, my lips have gotten too thick to smile right, and my hair is falling out, but I am doing well. Every day brings a new challenge, but still, with good luck, humor and a touch of science, I rise.

Have a good weekend everyone!

Science and the Scleroderma Girl: The Patient Scientist

It is really annoying to have an illness that just keeps going on and on and on… think of the energizer bunny here. A really annoying scleroderma energizer bunny. I am so over it already. I love my doctors, but they are really focused on slowing down the progression of my bad boy illness, systemic sclerosis, and are kind of dismissive of the pain and dizziness that is coming my way courtesy of the fibromyalgia and Sjogren’s Syndrome.

It isn’t that they don’t care. They just have clearly defined priorities in mind as they treat me. It is kind of like when my mom was going through chemo for her cancer. The doctors were very sympathetic about her struggles with nausea and fatigue, and helped her the best they could, but they did not let up on the chemo schedule. My doctors are also sympathetic, but they still took my immunosuppressant dose up as high as they could when I got into trouble with my lungs two years ago. Oh, you are having trouble sleeping? So sorry. Hang in there. It will get better…

Cat and computer.
Do you see how much help MacKenzie is giving me while writing this? He too is sympathetic. Oh, your legs are hurting today? Here, I’ll sleep on top of them for you…

I had a surge of rebellion about the same time that this was going on and decided that I would consider myself a walking experiment of one and would try to get a better handle of my symptoms; surely there must be correlations between what I was doing in my day and how I felt. If I understood my test results better perhaps I could have better conversations with my doctors. Stop being a victim, I told myself, and become a patient scientist!

Food log.
Today’s entry into my little symptom journal. I started out tracking my daily food intake, and then added in entries about other symptoms.

The food log was perhaps the most important thing that I did. I began to figure out lots of things by focusing on what I was eating and what my symptoms were. I ignored the “universal truths” that I was being told to me by other people and focused on what was happening with me. Bam! Some of the things that I figured out actually changed the diagnosis list on my chart, and I certainly improved the quality of my life. Here is the short list of what I discovered about myself: absolutely NO SALT or other forms of sodium, gluten is fine, fiber is a problem, lactose free dairy with live cultures is a daily must, bananas are boss, and I should eat foods with a low glycemic index. Oh yeah: vitamin D and krill oil supplements are good, but tart cherry supplements will damage my kidneys. Good to know.

What happened when I changed my diet? Muscles pain went way down, I got more energy, my gastritis and other GI symptoms improved greatly, I slept better, and the quality of my life improved. For each of those food choices I used myself as an experimental animal. Just one change was made in my diet, and then I tracked symptoms for a week or two to see what happened. My latest experiment has involved bananas; a banana a day keeps my muscle pain way down. Who knew? Have a headache? Eat raisins!

I began to gather other types of data. I took my blood pressure during times when I was feeling poorly to see what it was doing. That’s how I figured out that my inhaler was making my blood pressure drop. Now that I’m off my blood pressure medicine, my pressure is back up, and I’m using my inhaler safely every day. Today I noticed that I was a little short of breath while doing laundry…

Oxygen monitor
Oh. That blood oxygen level is a little two low. It was in the high 80s when I first checked, and was up to 91% by the time I snapped the picture.
Oxygen monitor
Well look at that! This is what happened a couple of minutes later after using the inhaler. My oxygen level is up to 95% and my heart rate has dropped back down. I really need to use this inhaler every day as it is helping keep my small airway disease under control.

Now that I’m using the inhaler daily my energy level is up in my little notebook. Hmm… I’m not sure if this is completely due to the inhaler as I also added bananas to my diet, but as I keep logging observations I may figure it out.

I also have started collecting all the data that I can get from my routine heart and lung testing. I usually get a phone call from the doctor that tells me how I’m doing, but with the data in hand I can have more meaningful conversations with my doctors.

PFT results.
This is some data from pulmonary function tests that were done 2 years apart.

The data that I have circled in the upper table of data shows that my lung volume didn’t change very much when administered a dose of albuterol during my first pulmonary function test, which was done right after I was diagnosed. Two years later, when I was really struggling with shortness of breath, the data in the lower table showed that I improved 16% in my lung volume after that same drug. The technician told me that this was a big response and that he was sure I would be prescribed a drug to help me; that didn’t happen until I made an appointment with my internist weeks later, told her about my response on the drug, and showed her the specific data that I had picked up from the hospital where the test was done. Bam!! I got the inhaler that day.

By collecting data at home and paying attention to my symptoms I’ve been able to give better information to my doctors who have responded with changes in my drug protocol and treatment focus. Today all of my doctors shoot me a full copy of all of my testing data as soon as they get it. I also can access data through the patient portal at Kaiser. I follow changes in data over time, and then I can have a meaningful discussion with my physicians when I see them.

I’m just one data point out of all of the patients that my doctors treat, but by using myself as a walking experiment of one I’ve been able to figure out management strategies to help myself and how to better communicate with my medical team to work with them as a collaborative partner.

This is good. I will never be in control of my illnesses, but I sure am poking them with the pitchfork.

Err… knitting needles. They have definitely been poked.

It is good to be a science geek.