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 Only Point in Common

Two years ago I was getting bounced around between several doctors as they tried to figure out why I was struggling to breath. The rheumatologist felt I should see a cardiologist. The pulmonologist felt that I needed to be treated by the rheumatologist. The internist insisted that the pulmonologist needed to intervene. The rheumatologist was very reluctant to give me an inhaler even though he had ordered the PFT that indicated that I needed one.

I was getting close to pulling out my hair! Literally, there were too many cooks in the kitchen and no one could manage to get the meal assembled. I was the cake in the oven, and I had just collapsed into an ugly, doughy mess…

“Look”, said the rheumatologist in the middle of this, “you are the only point in common between all of your doctors. Each one of us sees just one slice of your health, but you are the one getting all the info…” In effect, she was telling me to take charge of my health. Uh…

Spock: He is intelligent, but not experienced. His pattern indicates two-dimensional thinking… (Star Trek II: The Wrath of Kahn)

Seriously? I’m expected to organize this circus? I have skills, but to suggest that I should run this show is ludicrous…

Except, from a certain viewpoint, I am running the show; I AM the show. I have a serious illness, and I have a team of doctors to address my symptoms and halt my disease’s progression. I need to be proactive and ensure that I get the treatment that I need. Clearly, I needed help to sort through the conflicting advice and to assign priorities to the elements of my treatment plan.

There needed to be one doctor who knew me well, understood the big picture, who could also cut through the red tape and facilitate immediate medical response from the most appropriate provider if needed.

I made an appointment with my internist, who was also my primary care physician, and laid out the problem. I told her that I needed someone to review all the notes and test results from the other doctors on a regular basis to understand the big picture. I shared with her my concerns about differing information from the other physicians: I needed an expert to work with me to coordinate my treatment plan. There needed to be a doctor who saw me on a regular basis, who knew me and my situation, who could take a “snapshot” of my health situation, and who could see me almost immediately if I got into trouble. One of the problems that I struggle with is knowing which doctor to call when I develop problems; with this arrangement I have a designated first contact who will decide which specialist needs to be contacted next.

We agreed that I should come in every three months for the medical review and snapshot of my current status.

Everything changed for me. My internist reads everything from the other doctors at these appointments, and she answers questions that I have in a cross-disciplinary way that the other specialists can’t. It’s more like a consultation than the usual medical appointment. She looks to see what has been missed by the other doctors, and facilitates communication between the doctors. She has sent me for immediate testing, cut through the red tape so I could get oxygen when I needed it, and makes sure I get the complete text of all testing reports.

I make an appointment with her before I see the specialists to plan for those appointments, and then I see her afterwards to debrief on what happened and to see if anything was missed. When I go to my appointments with the specialists I can talk about test results, my prescriptions, and the symptoms that are concerning me; I have become an informed patient. Because of this I am a better conduit of information between the doctors, and the coordination of care and smooth communication has greatly increased. My doctors and I are now collaborative partners working to manage my disease.

From a collection of 6 doctors I now have a smoothly coordinated team to jointly treat my illness. For me, this is a huge difference! I’m now in much better shape, and I feel more in control of what is happening. I AM the only point in common, so I had to activate my hidden superpower of facilitation and coordination to make it work.

And knit. I had to knit a lot.

Have a good weekend everyone.

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.

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. 🙂

The Scleroderma Chronicles: Year 3.6 There is a 911 call…

Yep. It finally happened.

Upset cat
These scary firemen came to the house and took mom away.

It has been kind of a hard six months. I’ve been dealing with a serious flare of my Sjogren’s Syndrome: dry mouth, eye problems (retinal detachments in BOTH eyes), brain fog, and horrible fatigue. Seriously, off the chart fatigue. Bad Sjogren’s, bad!!

But I think that my systemic sclerosis (scleroderma) has been chugging along as well. My chest feels tight, and when I do anything at all I start to breath hard as I catch my breath. Okay, there might be some panting… Sometimes I get dizzy and I have to put my head down. Vacuuming is suddenly a horrific task, but just coming up the stairs or washing out a pan at the sink can also set me off. Sometimes my lips are blue…

Arm with edema.
Check out my edema:  Can you see the details of the quilt that my arm was resting on?

One of the problems with being chronically ill is that you just keep taking things in stride. After all, it isn’t like this is the first time I’ve seen edema like this, or noticed that my lips were blue. I get out of breath all of the time, and I’ve been telling my doctors about all of this for the last 18 months. But somehow, things seem a little worse now. I have heart palpitations and there is a constant pressure in the middle of my chest. I have developed a headache that just refuses to go away, and my muscles and joints are behaving even worse than ever.

So, Friday while I was resting up in bed after the ordeal of making my morning coffee (yep. I go back to bed to recover from getting out of bed…) I decided that I would call the pulmonologist’s office to ask for an appointment. As usual, thinking that I would be on my feet for only a limited amount of time, I planned several little chores to do while I was going to be up.

Arm Warmers
I took this picture of my incredibly cute new arm warmers. This is the Armelitas pattern by knitcats Design, and here are my Ravelry project notes.

Aren’t those the cutest armwarmers? I put them on, and then started the dishwasher, got a load of laundry going, and then pulled on some more warm clothes (ahem… my Cactus Flower socks and Marfa is a Black Elephant shawl over some fleece pants and a denim shirt) so I could sit at the computer downstairs to make the phone calls.

So, I was out of breath when I made the call. I got ahold of the nurse at my pulmonologist’s office to ask her if I should came in for testing right away or if it would be best to make an appointment. As I talked to her my breathing got worse… I just couldn’t catch my breath and I was now outright panting. I began to feel faint.

The nurse called 911.

I ended up sitting on the floor by the front door with the phone on speaker in front of me waiting for the paramedics to arrive. In just a few minutes they had bundled me up and were whisking me out the door leaving a visibly upset MacKenzie watching from the top of the stairs. It was snowing outside; I didn’t have a coat, but I had managed to hang onto all of my knitted items. The paramedics attached me to all of their sensors and then rebundled me in blankets and knitted items afterwards (okay, my hands turned blue. They hadn’t ever heard of Raynaud’s, but they becaume instant fans of wooly warmth when presented with fingers that matched my denim shirt…) My armwarmers were popped back on over the IV line and the oxygen sensor on my finger. They used the shawl as an additional blanket. I never got my breathing back under control, and was still panting up a storm when I got to the hospital, but I was better equipped than most to cope with the cold. I like to think that I was pretty darn fashionable, too.

Into the MRI machine I went, rocking my armwarmers, as once again the doctors went on a blood clot hunt. Every one of my health emergencies has involved blood clot hunts; it’s a scleroderma thing. No blood clot. No pneumonia. No heart attack. After 2 hours sitting on the gurney in the ER my breathing was under control again and my O2 was fine. My best friend Deb arrived with knitting in hand to sit with me. My son arrived in time to take me home again with instructions to not let me drive or stay home alone.

“This is something that needs to be treated by a specialist”, the ER doc tells me. “You need to call your pulmonologist’s office first thing in the morning to get in to see her. You need additional tests that can’t be done here in the ER”.

You think?

It’s hard to not be stuck by the irony of this. I’m back right to where I started. It is kind of known in the scleroderma community that going to the ER is mostly useless because they don’t have the knowledge and experience to treat your condition. I’ll be calling my pulmonologist first thing Monday morning, but this time I will be calling from bed in a well rested condition.

Grooming cats.
with my latte and the cats!

For those of you who don’t know all of the details of my autoimmune bad-boys, here’s what is going on:

  • I have the limited form of systemic sclerosis, which is a subset condition of scleroderma. I have thick skin on my lower arms, legs, face and neck mostly, but the damage is also affecting several of my organ systems. I am considered a classic case with all of the CREST components.
  • I also have Sjogren’s Syndrome, which is fairly common as about 15% of systemic sclerosis patients also acquire this sidekick condition along with the scleroderma. It’s serious in its own right, but not usually life threatening.
  • Systemic sclerosis has a whole basketful of complications: Raynaud’s Disease, interstitial lung disease, pulmonary arterial hypertension, and kidney disease along with the almost universal digestive tract complications. I have all of these, but in my case the words that are used to describe how I’m doing are “mild, early, and moderate”, which are nice descriptors to have if they are being used in the context of lung,  heart, and kidney disease. I’m kind of guessing that one of the heart/lung conditions has taken it up a notch.

Today I’m camped out with my son waiting for Monday to arrive. I’m knitting.

Do you know the great Elizabeth Zimmerman? Her famous quote, one that I bear close to my heart on days like this, is: “Knit on, with confidence and hope, through all crisis.”

Knit on, my friends, knit on!

The Scleroderma Chronicles: Rocking the Spoonie Clock

I, along with a lot of other people with chronic illnesses, consider myself to be a “spoonie”. If you’ve never heard of spoon theory, it is a metaphor that describes the intricate bargaining game that those of us with limited energy resources play everyday to balance our activities with the little gas in our tanks.  Christine Miserandino developed the spoon theory and described it in an essay on her blog in 2005; trying to explain to a friend how she managed fatigue with her lupus, she grabbed spoons and used them as props to represent discrete energy packets. If you only have a limited number of energy units (spoons) to use in a day, you are painfully aware of how many spoons everything that you do costs. A shower? That is a spoon. Walk to the mailbox to pick up the mail? Another spoon. If you want to grocery shop, plan ahead. When the spoons for the day are gone, you are done. If you planned badly, you are basically toast. Get ready for some bad days ahead.

Owner and her cat.
Wrapped in layers of knitted goods, struggling to stay warm, MacKenzie and I enjoy a late night purr break at the height of my flare in December.

Early last December I ran through my spoons and just kept going for another couple of days. I knew I was headed for trouble, but I was in a situation where there were no other options for me. Take care of today and deal with tomorrow when it comes, I told myself.

Oh dear. The flare arrived and fatigue descended with a vengeance. I slept 10-12 hours a night and collapsed in exhaustion for a nap at least twice a day. If energy is counted in spoons, I was down to only about 10 for the day. Not only were the spoons my problem; it appeared that as soon as I got onto my feet and went into motion an internal clock started running. No matter what I did, I could not go more than 2.5 hours without a nap.

Christmas shopping!! AARRGGG!!!

Thank goodness for the internet. I made plans and checked the availability of items I wanted to buy using my phone while in bed. I made sure stores close to me carried the items that I wanted. I made shopping lists in a little spiral notebook that I carry with me (hello… brain fog!!) to help me remember what I’m looking for while in the stores. I planned shopping routes that were short loops that would take me to three stores/stops max and then get me home before my time and energy ran out. I planned the trips for times when the parking lots would be almost empty so I wouldn’t have to walk far.

So, one day I planned and cooked food for the week. Who knew making spaghetti was so exhausting? Before I could get the dishwasher loaded the timer on my spoonie clock went off and I was done.

The next day I made one of the loops. Whew. I got right up from the nap, started up the car and headed off to Kaiser for my monthly blood testing. Then on to Target… hurry, hurry, it has already been an hour. I finished that loop at the book store where I shared a laugh with a mom who was making the same stops as me on her own shopping route. She had also gone to the public library, though. She looked at me kind of weird when I said I had decided to not go to the library as it was too far to walk in from the parking lot there. Ugh. No way was I going to explain about the spoons to her. No time. My clock was ticking; I was at the 2 hour mark and had to check out and drive home. Hurry, hurry. I’m now having trouble walking because my legs don’t really want to go… Brain fog is starting to close in and my head feels buzzy…

Home. Nap. I didn’t even take the packages out of the car until after the nap.

Two more days, two more loops, and I had gotten everything and even got stuff mailed out on one of the loops. Careful planning, lots of patience, and an acknowledgement of my limitations went a long way in getting me through everything. Did you know that if you go grocery shopping late at night there is no line. True fact!

For more than a month I was careful with the spoons and never ran down my spoonie clock. I knitted in bed. I ate my little pre-planned meals and ordered things off the internet when I could. I took lots of naps, kept up on my meds, and did everything I could to manage my symptoms. The Turkish Hell socks lengthened as the list in my notebook got items crossed off.

Today I am through the flare and I must have at least 20 spoons a day. Maybe even 25. I’m rich!! The spoonie clock is up to 6 hours. That’s pretty darn good.

You know, people are always telling me how great I look.

If only they could see my spoonie clock ticking away.