Yarn, Books & Roses

Rockin’ the Wool Market

What a great day I had Saturday at the Estes Park Wool Market with my BKB Deb. I have gone almost every year to this event for at least 20 years. I sat at my first spinning wheel here, bought my first fleece here, met friends, networked, and enjoyed close encounters with a lot of the critters that produce the wool/fiber that I play with as I spin, knit, dye and weave.

Girl kissing goat. — I don’t recommend kissing the animals, but sometimes it is so darn hard to not want to hug them and scratch behind their ears. Look at what happened while I was lining up this shot of a pigmy angora goat. A little girl leaned in and I had the shot.

Okay, to be honest, it is hard to ever have a bad day up in the Colorado Mountains, especially when the temperature down on the plains is a scorching mid 90’s °F. Estes Park is located in the Colorado Mountains right at the door of Rocky Mountain National Park, and is a great 90 minute drive for me from my home in Aurora.

Deb and I drove into Rocky Mountain National Park after finishing up at the Wool Market where I got this shot. It was a prefect, perfect, blue sky day.

Deb and I arrived early in the morning at the Wool Market with a definite agenda… buy yarn from Western Sky Knits! Seriously, we made a beeline for that booth as soon as we arrived. The call of fabulous yarn is pretty hard to ignore.

WSK yarn. — See this? A seriously ambitious yarn haul.

I had gone online the night before and made myself a shopping list. I wanted the black, grey, and raspberry yarns as stables for the stash. I had my heart set on more sock kits (cute yarn with the perfect little coordinating skein for the heel and toe) and some brightly colored yarn that would be stripy when knitted for arm warmers and socks. I wanted another speckled yarn to finish putting together a Speckle and Pop shawl. I desperately needed some more painted yarn for another Close to You shawl; one is not enough of these babies. July is right around the corner and I have the Christmas knitting list already fleshed out. I’ve been off the sock knitting pace, but with the right yarn I’m pretty sure that the afterburners will fire and I’ll be mass producing a stack of them before the first snow flake flies. Then there was the yarn kit to make a Faraway, So Close shawl in colors that I know several members of my family will love.

Anyway, some serious yarn shopping occurred. We actually went to the booth twice as I thought it might be a good idea to make one last call there just in case I was missing something… I’m not being defensive, really I’m not. I need all of this yarn desperately, and I’m not apologizing for my addiction one little, tiny, bit. I don’t have a problem, there is no problem here, move along…

Then there was this picture. You know that this came home with me too. The title is “High Strung”

After touring all of the other vendors it was out for yummy food (lamb kibbe salad and funnel cake!!) that was eaten up on the bleachers in one of the animal barns. As soon as lunch was over we stashed stuff in Deb’s car and then toured the animal pens.

Paco-Vicunas — Not only were there sheep and goats, but also more exotic animals like these paco-vicunas…

Bunny — …and this English angora bunny. Doesn’t he look like he wants all that fur off right away so I can spin it?

After looking at all the animals we were drawn to some pens of alpacas with fleeces and yarn for sale. Oh, my goodness. There was a perfect, perfect rose grey alpaca fleece that was really nice (but not perfect: it was a second year fleece and grade 2, but really clean) that I just couldn’t resist. My spinning wheel has really been whining lately for some attention. I should just give it some of what it needs. MacKenzie loves fleeces…

Alpaca fleece. — The yarn from this fleece will be just amazing. I can’t wait to get going on it.

I wonder how well this fleece will take dye? I’m thinking sport/DK weight yarn that will be natural, pink, gold, and purple that can be used for colorwork mitts, hats, cowls…

and a little blanket for MacKenzie too, maybe… I know that he will be helping me do all of this.

Have a great week everyone. You can probably guess what I’ll be doing. 🙂

Science and the Scleroderma Girl: Hard Choices

Everything happened really fast when I was first diagnosed with scleroderma and Sjogren’s Syndrome. I had been referred to the rheumatologist after the results of bloodwork that my PCP ordered up. The rheumatologist did an exam and some tests, told me that I had the form of scleroderma called limited systemic sclerosis, and was evasive when I asked him what this would mean for me in the long term. What would my life be like in five years, I asked. He said he needed to run some more tests and would get back to me. He also told me to stay off the internet.

Well, that was kind of ominous, don’t you think? My first clue that this might be rather serious…

I was given a prescription for a disease modifying drug (DMARD) called Plaquenil, a handful of pamphlets, and referrals for additional testing. Lots of testing. Waiting for my prescriptions to be filled I went to the lab to get blood drawn and then sat down to call to make appointment for the additional testing I needed. It was hard to not feel like the sky was crashing down on me.

Cinco de Mayo rose. — Hey, time for a rose break. Look at what is blooming in my garden this morning!

After 6 months of the drug Plaquenil I was feeling better, so I was a little shocked when the rheumatologist told me that it was time to add additional drugs and that he was going to give me the choice of methotrexate or CellCept. He handed me information on the drugs, ordered more blood tests to determine the state of my liver, and told me to call back in a week to let him know which drug I was comfortable with.

Of course I went straight to the internet. Hello. Science girl here. How should I make a decision without more information? Time to put all that chemistry and molecular biology to work!!

Ugh. After researching both of these drugs it didn’t look too good to me. Methotrexate is actually a chemo drug, given in a lower dose to rheumatology patients to suppress the immune response. I would need folic acid to try to minimize hair loss and other side effects, and it would knock me on my butt for a day or two each week. CellCept also suppressed the immune system by another pathway, had fewer side effects, more risk of cancer, and was really hard on the stomach. Both drugs had definite downsides. I would need to stay out of the sun to prevent DNA damage. My risk of serious infections, including PML, a fatal brain infection, would go up. The side effects of methotrexate seemed to be worse to me, but the CellCept would be awful on my gastritis…

If I chose to remain untreated with either of these drugs my chance of developing a fatal complication from scleroderma went up. I was already in the early stages of interstitial lung disease and pulmonary arterial hypertension, both of which could be fatal, so I really did need to try to slow things down with a drug…

Ugh! I was feeling pretty helpless about making the decision. What should I do when the future was unknown? Everything was a gamble and I didn’t have any really good choices.

I called my rheumatologist and told him I wanted to try methotrexate because I was pretty sure that I wouldn’t be able to handle CellCept. It was done.

Jacob sheep — Science and the Scleroderma Girl will be taking the weekend off because tomorrow I am going to the Estes Park Wool Market with my BKB Deb. Any day in the mountains is a good day, but it will be even better with yarn, peeps, and cute sheep. Woohoo! Fiber festival time!!

This whole process was kind of awful. Just knowing how these drugs worked and their side effects wasn’t enough. I needed more info. I needed to hunt down research studies.

Science time!!

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!

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.

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.

Science and the Scleroderma Girl: The Nature of Science

Logic clearly dictates…

Spock, Star Trek II: The Wrath of Kahn

Science. Everyone knows what science is, right? I mean, we have all been exposed to courses in science that involved learning lots of stuff about rocks, atoms, moving objects, plants, furry animals and stars. There are all of those books and all those facts, equations, and laws to learn. The vocabulary is ridiculous!

Science is also a way of thinking that allows us to learn new information about the world around us. It is a system of reason and logic that helps us understand what we know, and why we know it. Every year I started the biology course with a little unit called “The Nature of Science”, and this is what it covered:

Science is used to explore the natural, physical world around us. The magical and supernatural spheres are definitely off limits. The reason why is…
Science requires that we be able to collect data about a phenomenon we are studying: it must be observable with our senses or instruments. Something may be real, but if we can’t observe it we can’t study it using the rules of science.
In science you cannot whip out a miracle to make your model work…
The data that is collected should be consistent over time. Think about ghost research; instruments that show the presence of ghosts work on some occasions and not on others. That data isn’t reliable because it isn’t consistent. If I drop a glass it will fall to the floor every time, and it will accelerate towards the floor at the same rate every time I drop it. That data is reliable.
It should be possible to make predictions based on observations and prior understandings. We generally call these predictions hypothesis, and they get tested all the time in…
Experiments! The way we expand our understanding of the natural world is through experimentation that tests these predictive hypotheses. Observable data is collected during the experiment that allows us to draw some conclusions about whether the hypothesis was correct or false. Either way is fine. The point here is, we should be able to test the hypothesis to see if the prediction was accurate.
Here is the best part of science: based on what new understandings are generated our predictive models should be able to be adjusted. NOTHING is forever in science when you are dealing with the big predictive models that we call theories. For example, when I was a child I was told that mountains were formed as the earth cooled and wrinkles formed on the planet “like a raisin”. Ugh! Can you believe I was taught that?! Our current understanding of mountain formation involves the movement of large plates in the earth’s crust (plate tectonics), which actually makes more sense as it also explains earthquakes and volcanoes. Is my heart set on plate tectonics? Nope. If some new information emerges that supports an expanded or new model of mountain formation, I have to follow the data. That’s why theories are said to be “supported” by evidence, but never proven.

Science is about using logic and reason to learn new things about the world. Logical safeguards are in place to help make sure conclusions are valid (you know about some of these… I’m talking about controlled experiments, reproducible results, and peer review of published experimental results). Science is actually a form of applied philosophy; early scientists were called “natural philosophers” and today the degree is still called a Doctor of Philosophy. Yep. That’s what Ph.D. stands for.

Why is this stuff important to me and anyone else with an autoimmune disease? Unhappily, we are out there on the edge of the envelope, falling off the map, and beyond solid scientific understandings. We have diseases that developed via unknown pathways and causes, and they are not completely understood. There is no definitive treatment that will “cure” the disease. We are part of a continuing effort to expand scientific and medical knowledge as we progress through our illnesses using drugs and interventions that are the best predictions for good outcomes. We are all walking hypotheses, and what happens to us helps build the body of evidence on how effective our treatments were. As knowledge expands in labs about the biological pathways and the disease mechanisms, new treatments will be developed, they will also be subjected to this scientific process, and the total body of scientific understandings will grow. Someday it will all be “old stuff” and written in a dusty book.

But today, I’m rocking the edge of the envelope as a walking experiment of one.

I even keep a science notebook on myself.

That’s tomorrow’s post.

Science and the Scleroderma Girl: A Series of Serendipitous Events

Serendipity: the faculty or phenomenon of finding valuable or agreeable things not sought for.

Pincushion Flower. — This morning, while weeding the back wilderness, I found this transplant. Serendipity in the garden.

I can clearly remember the first event of historical significance that invaded my simple world of early childhood. I had been snuck into the big kids playground at our school by my rule-breaking older sister. Swinging on a high bar way too high for my little First Grade body, I listened to my sister and her friends talk about Sputnik; a scary object launched by the Russians orbiting the earth above me. I couldn’t see it, but evidently it could be followed because it was talking to the ground with radio signals.

Just like that I was gone. The world was round, there were things that happened in the world that I couldn’t see, but evidence could be collected that betrayed their presence. I was a science geek in that instant, and it never ever stopped for me.

Sputnik, and the ensuing space race, made money available for science education in the public schools. I was exactly the right age to benefit from this new emphasis on understanding the world around us through scientific thought. I was a curious child: I questioned everything, collected bugs, nursed baby birds back to health, begged for a microscope for Christmas (which I got), and read endless books.

Years later, married to a young serviceman in the navy, I ended up applying to the university near where he was stationed to study biology. That is how I ended up working towards a degree in molecular biology at UCSD. My professors were famous scientists and I was so lucky to learn from them. Stanley Miller taught me physical chemistry, and I learned immunology from Seymour Jonathan Singer. Ok, I took that immunology class from Dr. Singer because he was my advisor, and I was kind of scared of him. I couldn’t say no when he pressed me to enroll.

Because I had immunology under my belt I was hired at the Scripps Clinic and Research Foundation to work in the lab of Dr. Eng Tan, who conducted research that focused on the molecules in a cell’s nucleus that were the targets of the antibodies found in patients with rheumatic conditions such as lupus and, wait for it, SCLERODERMA. Yep. My first job in that lab was doing the ANA tests. Later on I was part of the research team that identified SCL-70, one of the molecules involved in the diffuse form of systemic sclerosis. Here’s the paper if you want to torture yourself. 🙂

I have to say, I loved working in research, but it wasn’t as creative and social as I needed my work day to be. I went back to school, got a teaching certification, and began to teach biology and AP Biology. Whew. I had to take lots of classes to stay up on things, and along the way I learned lots about human anatomy and physiology. Just as I was working into my comfort zone education transformed and educational standards were instituted. Good grief. Why do I have to keep on stretching my wings like this?

I had to teach students how to think and plan experiments just as scientists did in my classroom. I created lots of open-ended research problems that they could investigate, collect data on, and then draw conclusions that I could use to link to biological concepts that they were learning about. Wailing internally at the extra work, I began using science notebooks in my classrooms.

Students doing experiment. — In this lab the students grew yeast in different conditions and then collected the amount of CO2 gas that they produced as a measure of growth in the attached balloons. These students were varying the amount of sugar the yeast had.

Graph of experiment. — Here’s the graph from a student team that varied the growth temperature. Those yeast sure liked water that was 60 degrees Centigrade!

The kids liked the experiments, their ability to think scientifically grew by leaps and bounds, and along the way I really learned a lot of things myself. I ended up training other teachers on how to do science notebooking in their own classrooms, and eventually I helped write the inquiry science standards for my state.

Four years ago symptoms that I had been dealing with for years (and decades) overwhelmed me and I was diagnosed with a couple of the autoimmune diseases that I had learned about early in my professional life. Unbelievably, through no real choices of my own, I had been prepared with the background knowledge, resources, and experience that I needed for the fight.

Serendipity.

This is Science and the Scleroderma Girl, the mini-series project of blog posts about the adventures of a science geek in the world of chronic illness. June is Scleroderma Awareness Month, so I hope to put up a new post each day. I hope you’ll join me.

It’s June! Introducing Science and the Scleroderma Girl.

Okay, this is it. I’ve been fussing for over a year about writing a series about science, biology, medical decisions, and navigating safely through a world of alternative medicine and treatments. I’ve come close to launching into a block of mini-rants before, but never went there because it would just take too much energy…

June is Scleroderma Awareness Month. As luck would have it, June has also arrived as I sail back into calm waters following a 6 week storm set off by worsening symptoms, medical testing, and finally a collaborative consensus between my doctors and myself based on data that informs a new course of treatment. In other words, science, biology, and data-driven medical decisions have saved the day. I have lived a life of science in my educational and professional life and this training and way of thinking continues to save the day for me. I do have other skills, of course, but the foundation is always based in science.

I guess I think that it is time for me to share in case it helps anyone else.

Hot Cocoa Rose. — June has brought me the first rose of summer, too. Look at this cutie!

This month I am better. This month my energy is coming back, ideas for topics are swirling in my head, and I think that the time has come. I’ve started a planning grid with all of my topics and resources, and things are starting to come together. Since June is Scleroderma Awareness Month, this is the month that I should do this. If I can put this all together, there will be a post each day this month. With Star Trek quotes, of course!

I did tell you I was a science geek, didn’t I?

The Scleroderma Chronicles: I’ll take a side of fibromyalgia with that…

My poor physician team. I come to see them with a whole host of complaints at every appointment. I can see then mentally sorting the symptoms into piles as I talk :

important, needs to be investigated immediately.
sad, but part of the life of a patient with this chronic condition.
these are issues that should be passed on to another member of the treatment team.
irrelevant to the current diagnosis.

For three years I’ve been mentioning my muscle problems. My muscles are sore to the touch, and they just burn sometimes. The burning can go on for days, and I do get a little cranky; okay, maybe some wailing has occurred. Poor cats! It is really painful at connection points around joints. Stamina is poor, and I’m exhausted all the time.

Yellow cat. — I dragged a cat pillar into the bedroom for the cats to sleep on as it too hard to have them in bed with me. There are days when a cat paw on my leg is more than I can handle.

Some of these symptoms can be explained as being part of the whole scleroderma thing. Muscle issues are rampant with scleroderma as some of the necessary enzymes for muscle movement are too low for reasons that aren’t clear to me. My rheumatologist has checked for polymyositis and other serious muscle problems, but my muscle strength is good and my test results have been normal. I’m in pain, but my muscles aren’t being damaged. I have been just managing with heat pads and knitting as there seemed to be nothing that could be done. To make things worse I can’t have anti-inflammatory drugs or painkillers because my kidney function is low. Bad muscles, bad!

Best advice ever for the scleroderma girl. Really, what else can I do?

At my last visit with my rheumatologist I was really sore to the touch, and she suddenly asked if I was experiencing brain fog…

Oh my lord, yes! It is so bad I’m afraid to drive sometimes. I struggle with anxiety and some depression when things are bad. The fatigue is off the charts when this is going on, and I can’t get good sleep. Lately I have developed headaches too…

“Oh. This is fibromyalgia“, she said. Just like that the light had gone off for her; my symptoms were suddenly sorted into another pile that screamed “fibromyalgia”. She did a quick assessment, and the diagnosis was added to my chart lickity split…

I also have Sjogren’s Syndrome, and the symptoms of fibromyalgia and Sjogren’s do overlap, but it would appear that I have both. No wonder my fatigue has been so extreme.

So, nothing has changed, but at the same time everything has changed. I have concrete reasons for feeling so bad. My blood pressure issues have improved, and I am able to walk and exercise more. I’m using my inhaler every day and my blood oxygen levels are coming up. The more I move, the better I feel. Little by little, I am getting a handle on things again. I am sleeping like a rock and I wake up feeling pretty good.

My terrible twosome of autoimmune diseases just became a triad, and I am actually feeling more hopeful about my ability to manage things. Take that, you three! I am coming after you all with a pitchfork!

Err… make that knitting needles. I’m coming for you all the same. Be warned, I am taking you down!

Knowledge is power.

The Scleroderma Chronicles: The lung results are in.

Spoiler Alert: More good news!!

Last week I drove across town to a hospital that is connected to my pulmonologist’s Kaiser office building for my pulmonary function test. If you’ve never had one of these, there is a machine that you breathe into, a computer that is calling the shots and a sealed glass booth that isolates you from the outer world. Into the booth I went. Time to get some answers!

As part of the test I used an inhaler to get a big slug of the drug albuterol. Wow. That really helped. I’ve been avoiding my inhaler for months as I would feel just HORRIBLE after using it due to dropping blood pressure.

But I just quit using my blood pressure medications two weeks ago and now it was really obvious that my breathing was much better after using the drug. “Here, you’d better take this diffuser”, said the technician giving me the tests. “You’re going to be using this!”

Wednesday my pulmonologist called me with the results. My lungs are better than they were two years ago! More to the point, my pulmonary arterial pressure is down into normal ranges and there is less leakage (okay, they call it regurgitation… what an ugly thing to say about my heart!) at that heart valve. Woohoo!! The fatal complication that we all thought I was going to have to face down is suddenly off the table. I’m not going onto oxygen. My doctor and I virtually hugged over the phone.

Here’s the deal. I have a second autoimmune disease called Sjogren’s Syndrome that can cause small airway disease in the lungs. My Sjogren’s has been pretty bad this year, and since I responded to the inhaler drug really well it looks like that is what is going on. My doctors focus on my bad boy systemic sclerosis so much that they tend to forget about this other life-altering, but not fatal, condition. This year Sjogren’s has been stabbing me in the back.

“Time to start giving your inhaler a workout!”, my pulmonologist told me. “Then try to get more exercise. Your lungs need to continue their recovery, and we are keeping you on the high dose of your immunosuppressant drug.”

Inhaler and fitbit. — I bought a fitbit yesterday and I plan to use the inhaler daily while I steadily increase my exercise. Next week I’m going gym shopping…

It’s the drug. It absolutely is the new drug that I’ve been taking for the last 2.5 years. It is a new drug for the systemic sclerosis community, one originally developed for organ transplant patients, that is now collecting a body of evidence that shows that it not only slows down the rate of disease, but also allows some reversal and healing to occur by impairing the immune system attack on the lungs. My heart is better because my lungs are better. In a time when I have been experiencing chest pain and shortness of breath, it was because I was getting better and needed to come off some of my drugs, not because I was getting worse. I am completely blindsided and gob smacked by the unexpected turn of events.

Next week is the Estes Park Wool Market in Estes Park, Colorado. I’m off to the mountains and boy will I be running wild with my BKB Deb. I’m going to pet the alpacas, eat lamb kabobs, and then I am going to buy a boat load of yarn. My new fitbit will be getting a workout!

After that I’m going to see my internist so she can look at the big picture with me to see what else we’re missing. There’s another drug that I want to drop…

That will be another post.

Scleroderma Awareness Month: Hard Word. Harder Disease.

Every year I get a note from the Scleroderma Foundation about Scleroderma Awareness Month. Take the pledge! Tell at least one person about scleroderma! Coerce your friends into joining the walk for the cure later this month.

Piece of cake. I can do that. Hand on to your phones, because here we go.

Scleroderma is a crazy sounding word, isn’t it. It is actually descriptive of the most obvious symptom of the disease: based on Greek words, “sclero” means hard and “derma” means skin. Hard skin. My skin is interesting to say the least. Hard, shiny, speckled with white patches of scaring, tight across my cheekbones and knuckles: kind of typical for the disease.

“It’s just your skin”, I was told by my ex not long after my diagnosis. “It’s not a big deal, right?”

As it turns out, this actually is a big deal. The tissue under attack by the immune system is the connective layer just under the skin. You know, the layer of the skin that produces the collagen that gives skin its stretchiness and cohesiveness. Imagine what would happen if this tissue grew really thick, stiff, and then tightened down so badly that blood circulation was cut off and it became impossible to move correctly at the joints. The skin around your mouth can be too tight for you to open wide at the dentist, you can’t bend over to tie your shoes, and forget turning your neck. If your skin won’t stretch, you are in a fix for sure! Finger tip ulcers are a constant worry, and physical therapy to maintain flexibility becomes part of the daily routine. Or you can knit. Knitting is good for blood circulation and flexibility. 🙂

Best advice ever for the scleroderma girl.

This same connective tissue is also found throughout the intestinal tract, and in many other organs of the body. The lining of blood vessels also is impacted, and there is a lot of smooth muscle (like the muscles that work in your stomach) damage. Some people with scleroderma will only experience it in their skin, but others will have damage occurring in organ systems of their body. None of this is nice; some people will lose the function of their hands, while others suffer kidney, heart, and lung damage. Intestinal tract damage is almost universal, and some of these complications can be severe. Check out this neat interactive chart of symptoms.

So, what causes scleroderma? The actual answer is… nobody knows. It is an autoimmune disease that is triggered by unknown causes, has no cure, and if left untreated in the systemic form is fatal 50% of the time. Right now there is no drug to directly treat the disease, but there are treatments to help with symptoms and to modify the course of the disease by impairing the immune system. With these drugs survival rates are way up. Seriously, hug the next scientist you come across. I personally plan to throw a bar-b-que for the next one I get my hands on.

As it turns out, this year the month of June arrives at a pivotal time in my scleroderma life. There is so much going on, and so much that I’m thinking about, that I’m gearing up to post a whole series of articles about the complexities of navigating through the world as a chronically ill patient. Seriously. I could write a blog post for each day of the month. My little notebook that I jot ideas for posts in is filling up quickly.

I need a catchy title for the series. It will be about science, biology, medical decisions, and navigating through a world of alternative medicine and treatments. You know, like fake news, but instead we are dealing with fake medicine.

Whatever is a scleroderma girl to do?

Stay tuned. I’m seriously gearing up for this. June is going to be a great month.

Hey, if you want to walk with me for a scleroderma cure, just let me know. 🙂

MacKenzie Speaks: Meet Tegna!

Hi. I’m MacKenzie.

Cat and knitting. — I’ve been working really hard helping the Mother of Cats with her new summer sweater.

It has been a busy few weeks as I worked almost every night helping with this sweater. Would you believe that the Mother of Cats did not sufficiently appreciate my efforts? She kept pushing me off, and even CUT MY CLAWS short. She is always over-reacting to the smallest things. I stuck it out, we worked really hard, and yesterday she finished the knitting.

Steam blocking sweater. — Would you believe that she then attacked our beautiful sweater with the steam iron? Yellow Boy became frightened and hid in the closet because he was worried that she might be getting ready to trim off some matted fur, but nope!, she just hovered the steam iron all over our sweater to make it even out. Don’t you think that the lace looks nice now?

One thing about the Mother of Cats; she loves to knit (and give me cookies), but she is just terrible at weaving in all of her ends. Hey, I like playing with the ends. Maybe she is just trying to be nice to me. No. She is just lazy.

Finished sweater. — She ran out side and took this picture of her sweater without me to help. I kept requesting nicely to be let out, but she just wasn’t having it. I even yowled and that didn’t work. What is up with the Mother of Cats?

Do you see the unwoven ends? I asked to be let out to play with them, but nope: she just ignored me.

Lace detail of sweater. — She really likes this lace detail!

Neck edge of sweater. — She is not, however, completely happy with the neck edge. She plans to ask her knitting group if this might look a little better with an i-cord BO. Sweet. Frogging. I love frogging!

The Mother of Cats is now knitting on some little projects to get them out of the way so that she can cast on another sweater. She hopes to get going on it in another week or so.

Do you think that is enough time for me to grow out my claws?

Sleeping cat. — Meanwhile I think that I will catch up on my rest to get ready for the next big knitting project!

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

This sweater is Tegna by Caitlin Hunter. My Ravelry project notes are here.
I’m knitting like crazy on a Closer to You shawl that will go with the Tegna. I’m also hoping to finish up some arm warmers that have been luring in my knitting bag for several weeks sniffing pitifully at their abandonment. Buck up, arm warmers, your time is coming!
I wound the yarn for a Summer Sky sweater last night and printed out the pattern. I will resist casting on. I will. I am strong…