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

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

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

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

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

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

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

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

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

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

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

Have a good weekend everyone!

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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: 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.

The Scleroderma Chronicles: The cardiac test results have arrived…

Spoiler Alert: there’s a happy ending!

It has really been kind of a rocky month. Following several episodes of shortness of breath, chest pain, heart palpitations and blue lips my doctors decided that I was due for a full round of testing. My primary care physician ordered up a battery of cardiac testing and sent me off to see my specialists.

Cookies
First up: the pulmonologist. I made these cute little sheep cookies to take to the office staff when I went in for my appointment.

I really like my pulmonologist. She is thorough, direct, and answers all of my questions without sugar coating things. I had chest pain in her office and while I was talking to her my lips turned blue right on cue. Wow. It’s like having a trick pony that performs for the audience! We talked about the possible causes, all of which were pretty serious heart conditions, and she decided that I needed to complete my cardiac testing before I did her pulmonary function tests.

I’m not going to lie, it was sounding pretty serious. She thought that I either was developing heart failure, pulmonary hypertension (a fatal complication of scleroderma), or my heart was being starved due to blood vessel constriction.

Next up: my rheumatologist. We discussed increasing my immunosuppressant dosage to crush my Sjogren’s, which has been pretty active, into submission. She hated to up the dosage unless there was no other choice due to the risk of infection, especially since she thought that it was probable that I was experiencing pulmonary hypertension symptoms, and that meant that the pulmonologist should be the lead on treatment.

What was needed, clearly, was some test results to clarify the situation. And knitting. Lots of knitting.

Knitted fabric.
I knitting like crazy all month on the What the Fade?! shawl and finished it yesterday. There has been research that shows that knitting has calming benefits greater than yoga. Since yoga is out of the question right now, I knit.

Are you familiar with Holter monitors? That’s the test where you are hooked up to sensors and wires that go to a device that records your heart’s electrical activity for 72 hours. 72 long, itchy, forced to sleep on your back, OMG, how did this sensor get attached to my hair, hours. Whew. It was done. The results: my heart was normal. Still short of breath and feeling dizzy, I went back to knitting.

Next up was the echocardiogram.  Dizzy and feeling faint, I went for the test one morning last week and then headed on over to my LYS for some knitting action. Following my BKB Deb around the store looking for the yarn to knit a Tegna sweater I felt faint and ended up sitting on the floor at one point. This was getting ridiculous! Especially since the technician who did the echocardiogram test told me that she thought I would be very happy with the result…

I began to wonder if the problem could be my blood pressure. After years of battling hypertension that was hard to control I was posting some really low numbers at my checks. Maybe I was getting too low?

I did a little searching on the internet, and discovered that there was some research that suggested that it was important to keep diastolic pressure above the 60s. Oh. I was often in the 60s. Maybe I was sending my pressure down too low every time I took my morning medication. My doctors were so happy with the current numbers, but maybe things had changed. Maybe I didn’t have hypertension any more… maybe the pulmonologist was right about the blood starved heart, but it was due to low blood pressure. I decided that I should check my pressure every morning before taking my meds.

Blood pressure.
Tbis was my blood pressure reading the next morning before my medication.

I skipped my meds and started recording my pressure readings several times a day. The chest pain and dizziness disappeared. I sent an email to my primary physician with the BP log attached and we set an appointment to talk yesterday as she had just received the echocardiogram results.

Surprise!! My heart is in better shape now than it was at the time of my diagnosis. My pulmonary hypertension is gone and my heart is now pumping normally. She agreed that my high blood pressure seems to have reversed and that the medications that I have been taking are too much for me now. We agreed to try a quarter dose for a few weeks to see what happens.

The immunosuppressant drug that I am taking has been shown to reverse scarring in lungs, and the high blood pressure drug that I was taking (in too high a dose) also may have positively impacted my heart. My skin isn’t as tight as it was a couple of years ago; it looks like my blood vessels are also now in better shape. Less stiff blood vessels means lower blood pressure. Yay!!

My doctor thinks that the drugs have caused these improvements.

My neighbor, who mows my lawn and prays for a miraculous cure, is sure that God has intervened.

I’m convinced that it was the knitting. 🙂

Next week: the lung testing begins.

MacKenzie Speaks: The Tale of the Turkish Hell Socks

Hi. I’m MacKenzie.

Cat face
I know that it has been a long time. I hope that you haven’t been missing me.

The Mother of Cats has been a severe disappointment for just weeks and weeks. She caught some kind of cold early in December, carried on like a baby for over a week (nasal spray, salt water gargling, boxes of tissues… Yellow Boy and I became quite concerned about her mental health…) and COMPLETELY ignored our needs. As if that wasn’t enough, when she finally got over the virus, she then became even worse. She slept for hours and hours, stayed in her bed even when she was awake, and totally failed to deliver our cookies on time. SHE DIDN’T EVEN DO CHRISTMAS!!! which is totally our favorite time of the year. Hello… Christmas trees = world’s best cat toys. How could she have failed us this way?

She said she was in a flare. Whatever.

When she was awake she worked endlessly on these socks for her cousin’s Christmas present.

Yarn Blank
The yarn for the socks was from this sock blank that she bought at a yarn festival. She made it into a ball and wouldn’t let me help even a little bit.
Knitting
She wanted to make these complicated socks for her cousin. This cousin is special… they were born two days apart and are kind of like displaced twins. This cousin once gave her a whole quilt for a present. The least she could do was to make these socks! She started knitting the first week of December. Lots of time. I looked forward to days of great knitting together.
Cat
But she was too tired to knit very long on them at a time, and can I be frank, she was pretty stupid with brain fog. Lots of mistakes. Lots of stress. She kept chasing me away while I was helping. She tried to knit in bed, which is MY place. So I ate the yarn a couple of time. If she gave me cookies in a timely manner these things wouldn’t happen.
Heel of the sock.
Her lack of energy and general stupidness was really obvious when she knitted the heels. It took her THREE HOURS to pick up those stitches to knit the afterthought heel. She started sighing and pushing me off the bed. She began to refer to the knitting project as the Turkish socks from hell. The Mother of Cats was really in trouble.
Cat and knitting.
I just kept on encouraging her. I purred a lot. I settled for fewer cookies. I even stopped eating the yarn. She was really in pitiful shape.
Unfinished socks.
By Christmas Day she had finished this much. Her cousin reminded her that Christmas continues until January 6th.
Finished socks.
Finally, finally they were done!
Finished socks.
Those horrid and ill behaved heels look pretty good, don’t they?

The Turkish Hell socks were packed up last week and mailed out. On Saturday, the last day of Christmas they arrived safely in their new home. They had better behave themselves and last for years and years; I would hate to travel all the way across the state to whack them into shape!

I’m such a good boy.

Can I have some cookies now?

>^..^<

Notes from the Mother of Cats:

These socks, called Classic Kilim, are from the book Around the World in Knitted Socks by Stephanie van der Linden. The socks were supposed to have tassels and embroidery; that so did not happen!!Here is the info on Ravelry with more info about the book. My notes on Ravelry are here.

On December 1st I got my pneumonia vaccine even though I had been struggling a little that week. That night my youngest son became ill with complications of diabetes and was rushed to the ER . I spent the next 2 days/nights at the ICU with him. Yep. About the time my son returned to work and I moved back home I was sick;  my autoimmune diseases flared while I was fighting through the viral illness. My Sjogren’s symptoms have been off the chart and crushing fatigue and brain fog appeared along with them. This week I am better and have been knitting up a storm and planning blog posts. Hopefully I’ll be online again in a couple of more days.

Happy New Year everyone!