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!

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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: Research Results

Yesterday was a good day for me. I ran to the library, went grocery shopping, and had my hair cut. The stylist who cut my hair, however, was having a poor day: she has fibromyalgia and was struggling with the pressure front moving through Colorado. I told her about bananas, and she told me about a new product that she was buying off the internet. As we swapped info she pulled out the bottle of her supplement and I snapped a picture of it with my camera. She gushed about her product: it is just great! It cleans toxins from your liver and pancreas too!

Okay, I just checked out this product  online, and it will need a blog post of its own. It has 19 different ingredients in it that I have to check out, but right now I think that I will need to stay away from it as it has aspirin in it from a willow bark ingredient. I already know that aspirin is something that can hurt my (already struggling) kidneys and put my stomach lining at risk (the gastroenterologist sent me a strongly worded letter on this topic… I’m complying!)  The other ingredients might be okay, however, and I should check them out to see if they are possibilities for me to add to my diet.

So, how do I do this? I do lots of searches with key words like “research”, “evidence”, “inflammation”, “mortality rates”, “efficacy” and the item that I’m searching for. When a friend recommended that I try tart cherry extract to help with inflammation I typed in “does tart cherry reduce inflammation” and discovered that there was an active ingredient in tart cherry that really did reduce inflammation and that it was more gentle on stomach linings than a NSAID. Clinical research projects had been done that showed positive effects by measuring inflammation markers in patient blood. I talked to both my internist and my rheumatologist about it, got their okay with some stipulations, started the supplement with medical monitoring (blood drawn every month), and had to stop 3 months later when my kidney function dropped dramatically. Oops.

There is an important lesson here. Just because something is “natural” doesn’t mean that it is safe. Think like a scientist. Keep a journal of your disease symptoms, diet and interventions. Ask questions and talk to your doctors. Educate yourself as much as you can.

English Rose.
Time for a rose break! Look at what I found in the garden this morning!

Where do I go for information? I could have gotten info from sites linked to the company that markets tart cherry extracts, but that information is somewhat tainted by the simple fact that they want me to buy their product. I look for information from major publications and research funded by the public domain. Some of the best places that I’ve found to go are:

  • The National Center for Biotechnical Information (NCBI) has links to lots of places you can access for information. I used this site a lot as a teacher as students could look at genes and run DNA comparisons. Now I can use it to research tart cherry!
  • Linked to the NCBI home page is a great resource: PubMed. Everything in the medical and biological universe is searchable at this site; you can see the synopsis with a general outline of the research and results,  and there are links to the journals and books along with information on how to access the full text. Some full text articles are free, and there is advice on how to get others.
  • A subset of PubMed that is extremely useful, both for the search engine and information on how to evaluate information you find, is PubMed Health. For me, this is the mother lode.
  • I live in Aurora, Colorado. I am lucky in that the CU School of Medicine is located here, and there is a great library there. I went into the library, talked to them, and got an account that allows me to access articles through their licenses. So far I’ve only had to resort to this option a couple of times, but it is good to have it.

Next to keeping my journal, the info I find using these resources has been extremely helpful and empowering in my battle with these ill-behaved autoimmune conditions.

Knowledge is power!

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.

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.

Ravellenics Update: Sweater Skeleton Start

I have to be honest here, I was afraid to commit to the Ravellenics. Knitting under a deadline is stressful. Making a sweater can be stressful. Joining a team is stressful. I mean, why should I put myself into the position of committing to something when my overarching goal in life is to maintain a stress-free bubble for myself within the chaos of life. I just emerged from the mother of all flares; best to stay low key.

Yarn
Look at this great Malabrigo Rios. It has been making a ruckus since before Christmas demanding that I make it into a sweater. With pockets. Who am I to argue with a great yarn?

Well, some of you guys really encouraged me to give it a go. Huge shout out to muddlingthroughlifesite and nothingbutknit2 who convinced me to go poke around to see what was going on with Ravellenics. Oh, my goodness. This looks both overwhelming and horribly exciting at the same time. So much information. So many groups and events. SO MUCH FUN!!! There is an event called Sweater Skeleton. Head first! Yay!! You know that I needed to jump into this action. I just needed to find a group and a team.

Hello Chronic Bitches group. You were just what I needed. Who knew there was a group on Ravelry for people with chronic medical conditions to share and support each other? I am now a Chronic Bitch knitting as a member of their team. I have to be honest here… Village Hopelessly Overcommitted was a pretty good fit, too. A support group for people who just keep on buying new needles and casting on while hunting for sources of chocolate to munch on. See… a great fit for me. Still, since I was so worried about staying flare free for the whole 15 days of Ravellenics, I went with Chronic Bitches.

Sweater
I got my yarn wound and all kitted up so I could cast on and begin knitting as soon as the event opened, which was at the start of the Olympics Opening Ceremony. Oops. That’s 4am my time. Okay, knitting started a little later than that on Friday. This sweater is Cushman by Isabell Kraemer.

I binge watched the Olympics and knitted all weekend. Yesterday I reached the point where the sleeves are put onto holders and I am now racing down the body of the sweater.

Sweater in progress.
The colorway of this yarn is “Cirrus Grey”, and the knitted fabric does look a little like a rain cloud. I’m really loving the look of this.

So, I am just rocking along at this point. My gauge is spot on, and I haven’t run into any issues with the yarn or the pattern. It was cold and snowy all weekend, so staying in to knit was perfect. My disease is behaving itself and even the cats are cooperating.

Yesterday I took a little break to go shop the stash to put together the yarn for a couple of new projects. “What the Fade” shawls, to be exact. Crazy. I’m dreaming of new shawls while knitting along on this sweater under a deadline. I yearn to cast on some cute socks. My arms want Valentine’s Day arm warmers.

I may be a Chronic Bitch, but I so belong in Village Hopelessly Overcommitted!!

I’m off to find some chocolate…