Science and the Scleroderma Girl: What a Cell Wants… (AKA the Sugar Rant)

I’ve been pressured repeatedly to “give up sugar” to control my inflammation. Really, people have been pretty darn aggressive in this messaging both in person and online. To be fair, the people pressing this message must have felt they were improved when they cut back on sugar, but every time it happens I am torn between tears and frustration.

I’m sorry, but this is like telling me that I can’t put gasoline into my car anymore. The car simply can’t run on air alone, and neither can I.

Eukaryotic Cell
Cutest drawing of a cell ever!! This little guy, an idealized animal cell, needs many essential components to stay alive, including a constant supply of glucose and oxygen. That’s what a cell wants, what a cell needs… 

Okay, to be clear, we do need a component of air for energy: oxygen. I was running short of that commodity earlier in my scleroderma career and had to be placed on supplemental oxygen for about 6 months waiting for my drugs to kick in and save my ass. If you are short on oxygen, as I can attest, you are also short on energy and you can’t think very well. I was in trouble, as my pulmonologist put it, because my “engine” (my lungs) was too small for my body.

The other essential energy component is sugar, or specifically, glucose. Cells, and by extension, bodies, use an amazing system of biochemical pathways to convert biological materials to glucose, maintain a steady concentration of glucose in your blood, and then pack away the excess for storage in your muscles and liver. If blood glucose levels drop too low your body releases glucose from storage. If the stored glucose gets used up, your body begins to cannibalize other tissues. Why is glucose so important? Because it is used in the mitochondria located in body cells along with oxygen to produce the energy molecules (ATP for you geeks out there) that are used to run the whole biological show. If there is no ATP, the whole show stops. That’s why it is critical to keep people breathing and their blood pumping, but also why it is important to consume glucose.

My relationship with glucose is pretty darn complex. Too much sugar at a time isn’t a good thing: it can dehydrate and damage tissue, and high blood sugar can cause blood pressure spikes. Take home lesson for me: don’t binge on milkshakes, sugary pops, and French fries. Because I had hypertension and a family member with diabetes, I have spent years developing a diet that has a low glycemic index. I eat yellow potatoes instead of white ones, recipes with half the flour replaced with oatmeal, and little sugar. I also eat fresh fruit in my yogurt smoothies, and rice mixed with veggies. I am eating sugar every single day in my meals, and it really is essential for me to function properly; the trick is to try to consume it in a way that helps maintain good blood sugar levels. Frosting loaded cinnamon rolls… NO!! Banana and strawberry smoothie with yogurt… YES!!

So, every time someone insists that I have to “cut out sugar” I can feel my head getting ready to explode. I wonder if they understand that potatoes, bread and rice are also “sugar”. Have they given up fruits? If they are also cutting out gluten they may be actually spiking their blood sugar with rice-based alternatives. It is kind of crazy talk… It also is kind of “it’s your fault you are sick” talk. Not nice!!

Knitting
It makes me go sit in a corner somewhere to knit away the frustration…

The research is mixed on the link between sugar and inflammation. There are lots of articles on healthy eating sites that say it is bad, but I wanted to see actual controlled experiments looking at the link between sugar and inflammation. There are several ways to check for inflammation but most look for inflammatory markers in the blood and cell permeability. This controlled research study found that there was no link between excessive sugar intake and inflammation. It’s kind of a small study, though, so I went hunting for more. This study showed that sugars obtained from food were not inflammatory, but when people consumed free sugars (spooned sugar into coffee or cereal, or drank sugary fruit juice) they did increase inflammatory markers. Cool. That totally makes sense, and explains why other people are reporting that they feel better when they “cut out sugar”. My sugar canister goes months without being opened… I don’t add sugar to anything unless I’m baking. Still on the hunt for info, I found this meta-analysis of research studies that showed that high-fructose corn sugar wasn’t any worse than any other in terms of inflammatory marker increases.

Okay, I think that the rant is over. Sugar is your friend, but don’t get crazy people…

Back to the knitting!

Advertisements

Science and the Scleroderma Girl: The Dairy Rant

It happened again just last month; I was advised by another scleroderma patient in a most assertive and authoritative manner that I could not eat any dairy because it “was inflammatory”. She followed up with a lecture on how cow milk is not appropriate for humans, and that most people were lactose intolerant because it wasn’t good for us once we become adults. In her defense, there are numerous sources on the internet that argue that dairy is inflammatory (like this one, and this one), and many people accept this as common knowledge.

Sigh.

Cat face.
This was not a message that the Mother of Cats wanted to hear…

I get it. We are all in the grips of a chronic disease that refuses to behave itself, and we all want regain some control through our diets. I just have trouble accepting these blanket arguments without working the problem first. Hello, Science Girl! Here’s a little unpacking of the inflammatory dairy argument:

  • Inflammation: for me, the easiest way to think of this is the heat, redness, swelling and pain that is associated with trauma or irritation. It’s your body’s first level response to a possible invader; the local temperature is raised, fluid moves into tissue to allow defensive white blood cells to move around, and signals are sent out to activate other parts of the immune system. One of these signals is C-reactive protein, which can be measured in blood. Mine gets measured every month.
  • Cow milk: cow milk is inappropriate? What?! Does that mean I can’t eat chicken eggs, or even bananas for that matter?  Moving on…
  • Lactose: this is a disaccharide, a two-unit sugar made from the simple sugars glucose and galactose. In our digestive system we need to use the enzyme lactase (made in the lining of your small intestine) to break the two units of lactose apart so that the single sugar units (glucose and galactose) can be absorbed. Lactose itself is too big to be absorbed.
  • Lactose intolerance: if your body no longer produces the enzyme lactase  that lactose ends up in your large intestines where it is food for the bacteria that live there. Yep! Bacteria party time! The byproducts that they produce as they grow cause the unhappy inflammatory outcomes (gas, bloating, pain, diarrhea) that all lactose intolerant people know only too well.
  • Allergies: if you are allergic to casein, found in milks, then you need to avoid dairy as it will be an inflammatory agent for sure!
Dairy products.
Dairy that I eat… 

So, here is the take home lesson from my unpacking: if you are allergic to milk or have lactose intolerance, then consuming dairy products will make you sick… they are inflammatory. Cool. I get it. What if you are lactose intolerant though… can’t you just avoid the lactose and keep the dairy? Armed with my food log, more curiosity than is probably good for me, and a tendency to use myself as a one person experimental animal, I kept looking for safe food to eat.

I have to be frank here. My intestinal woes are so bad that I have developed a fraught relationship with the refrigerator. Seriously, I open the door, look inside, and view the contents with a jaded eye as I ask myself: what can I eat in here that won’t make me sick? I keep a food log, and anything that makes me sick more than once gets tossed. I throw out lots of food. I have also discovered that there are some foods that are the safest to fall back on when I’m struggling.

Dairy. No matter how bad things are, I can rely on yogurt and cheese, along with a few other mainstays, to get me through a rough patch and stable again.

Here’s the trick: I choose my dairy very carefully. My milk is the kind that has the lactose removed. I only eat yogurt that has live cultures in it; they already snacked on the lactose and it’s gone before I eat it!

Cheese label.
I only buy natural cheese, and as you can see it is made with almost no additives. The enzymes were used to create curds in the milk, and that cheese culture took care of the lactose for me.

I read a lot of labels these days as I shop, and slowly I have discovered products that are safe and reliable. There is a sour cream with cultures that is safe. There is a safe cottage cheese. I haven’t found safe ice cream, but I’m still on the hunt. It’s best to stick to natural products, but even that isn’t good enough.

Cheese label.
This is natural cheese that says it has no sugars. I still won’t risk it because it was not made with cultured milk.

For me, always on the hunt for food that I can eat, dairy is my fall back safe zone. It will get me through a bad time, and if I eat yogurt every day I actually seem to improve. My C-reactive protein level drops. It’s almost like dairy is anti-inflammatory…

There are now numerous studies that show that dairy is anti-inflammatory. This review of clinical evidence showed that dairy reduced inflammation in individuals without a milk allergy, and here is another presentation arguing that dairy is anti-inflammatory. Check out the references!

So I told this woman that I had discovered that I needed to eat yogurt every day or I would run into trouble. Her response? You can’t eat that type of yogurt… it has sugar!!  Sugar is inflammatory!

Sigh.

Science and the Scleroderma Girl: Hard Choices (Part 2)

Last week I wrote a post about trying to make a good decision about what drug I should be treated with for my systemic sclerosis. My rheumatologist had offered me methotrexate and CellCept; after trying to gather info about the drugs and their symptoms I unhappily picked methotrexate.

Cat
the Mother of Cats chose badly…

The first weeks of the drug seemed okay. I had a couple of hard days after taking my dose on Monday, but then I would feel much better for the rest of the week as the pain and brain fog receded for several days. The crazy thing was, my knees hurt REALLY badly during those two bad days. I checked online and other people had experience a similar phenomenon, so I soldiered on. Then one week the pain was pretty bad in my lower chest and right side and I was having trouble walking and breathing…

IV in arm.
Off to the ER I went where they hunted for lung damage and blood clots… 

It was an inflammation of the cartilage of my ribs, a condition called costochondritis. I called the rheumatologist’s office to see what I should do next, but didn’t hear back for a couple of days. I then emailed, and called again.

Finally the call came back; I was having a rare bone reaction and needed to stop the methotrexate. He was starting me on CellCept immediately.

Oh, that was an adventure. So much stomach pain… scratch that… stomach fire! Not just my stomach… my intestines were on fire too!! I gulped down spoonfuls of coconut oil trying to baby my stomach lining. I added food with the pills. I started vomiting in the middle of the night. It didn’t matter what I did, my stomach was going to be very upset. I stopped the drug and shot off an email to the rheumatologist again.

Hence began the two month battle to get me onto another form of drug in CellCept, which is mycophenolate mofetil. A stomach gentle version called Myfortic did exist, but it was not approved for systemic sclerosis, so the pharmacy refused to fill it. My rheumatologist filed an appeal. It was denied. My rheumatologist doubled down. Another rejection. Eventually I drove down to the Kaiser pharmacy and talked to the pharmacist as calmly as I could. I reminded him that Myfortic as just another salt of the approved drug, I had failed the approved form, my rheumatologist had appealed for this drug, and that I had a letter on file from another doctor in the Kaiser system stating that my gastritis prevented me from taking NSAIDS or anything else that would damage my stomach lining. I must have looked pathetic, because he gave me the pills.

Three years later I have greatly improved because of this drug that we had to fight for. In the meantime I have discovered (by hunting for info on PubMed Health) that while methotrexate helps with symptoms like inflammation and fatigue, the better choice in the long run is the drug that I am now receiving as it is associated with skin, lung, and heart improvements and better survival rates. I do have a higher lymphoma risk with this drug, and infections are a constant concern, but I think that I’m with the best drug available for me right now.

There is a take home lesson here. If you aren’t happy with your treatment, speak up! I should have contacted that doctor about those hurting knees long before I ended up in the ER. It’s easy to take a passive course when you are dealing with busy doctors and unhelpful pharmacists, especially when you aren’t sure if your symptoms are significant, but it is worth the time to shoot off a fast email anyway.

And let’s be honest. There are no easy choices, only hard ones. But even a bad choice can be corrected down the road with some luck,  persistence, and a dash of science.

Rose
I bet you wondered where the rose was, didn’t you. Here it is, a little beat up by the hot weather, but still looking great!

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!

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.

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.