It’s been a long time since I’ve talked about the garden. Over the last couple of years, forced indoors because of my scleroderma, I have had to settle for some potted plants out on the back porch. My favorites among these plants have been surviving in the garage during cold snaps and snowstorms, but we have finally reached a point where the cold is too prolonged for that strategy to work any longer. Time for them to come indoors! I gave them all a little spray of neem oil to kill hitchhiking pests, dragged them inside, and put them near windows. Obviously that wouldn’t be enough light for the little rose bushes. You know, the kind that you buy at the grocery store when you meant to just buy bread, milk, and ice cream. I have several pots of those roses and those babies were growing in bright sunshine all summer! Last week I headed on over to my favorite garden center to see what I could do to help my floral buddies survive over the winter in the house.
While I was unpacking the grow light and putting it into the stand I noticed that the light fixture itself was designed to also be attached below ceilings, shelves, cupboards, or some other solid feature. There are two little metal brackets and two screws involved. Hey, this is something I can do. I have more plants needing light! I headed back to the garden center.
I’m pleased with how the plants are managing with the new light, but there is an obvious readjustment going on with the little mini-roses. They are undergoing a transition with their leaves…
I’m pruning the little bushes down to a lower height as they finish up with the last of the summer blooms and the old leaves drop off. There is so much new growth on the stems I’m pretty sure they are going to be fine.
It looks like I’m in business. Winter roses. I may not be able to get outside all that much now, but with the new full spectrum grow lights and the indoor roses it’s like I’ve brought the garden indoors.
Once again, I am knitting in my garden surrounded by my roses.
Wow. It is hard to believe it, but it has been more than 4 years since my diagnosis: Limited systemic sclerosis (scleroderma) and Sjogren’s disease. Time just flies when you are having fun, right? Seriously, I have been reflecting for a few weeks about what to write to mark the end of the fourth year. Should I write about how strange a dichotomy scleroderma is: people tell me that I look good, but what they can’t see is how my entire life is organized around accommodating my illnesses. Maybe I should write about how I have developed a Zen-like patience as I hit each roadblock; why worry about things you can’t change when in the course of time all will become more clear? Maybe I should talk about growth. Personal growth in the face of a heartless disease as I came to terms with my own ability to become an active member of my treatment team and to assert myself in the face of medical experts.
Done! Personal growth it is!
When I was first diagnosed I really did go through a time of sadness and grief. It just came in waves for me as I began to figure out that systemic sclerosis and Sjogren’s are both incurable and difficult to manage. Then I realized that they might be disabling. Then it finally dawned on me that they might be fatal. To my horror I discovered that the 10-year survival rate was 60%. There would never, ever, be a “better”, I thought. The best I can hope for is becoming stable and maybe getting some softening of my skin.
The great unknowns of scleroderma really wore me down. Doctors kind of dodged my questions or referred me to another doctor on the team. I was afraid, and I didn’t want to make too much of a fuss because I was dependent on the medical specialists and I didn’t want to alienate them. I was struggling, weak, and truly a victim of my disease.
Flash forward 4 years. Things have changed. I began to keep a food log and journal and I worked out dietary changes that helped me. I participated in a self-management study, and I attended a couple of conferences. I remembered that I was trained to be a scientist, and I employed logic and reason in my scleroderma life. I spent a lot of time with Doctor Google and reading research papers at PubMed. I fired a rheumatologist, found another one, and convinced my primary care physician to meet with me regularly and to filter all the test results and doctors notes into a cohesive action plan. My care improved as I communicated better with my doctors and they developed a good sense of me and the other doctors on the team. My power over scleroderma grew as I faced down crisis after crisis. I may not conquer this disease, but by golly I will be brave and give it a good whacking!
Here’s an example of what I’m talking about. I have to get routine blood testing to make sure that I am tolerating the drugs that I’m on well. I went for the blood draw two weeks ago, and a couple of days later I got a phone call. There was a problem: a liver enzyme was suddenly elevated above normal ranges. I was told to head on over to urgent care to get checked out. I’m a compliant patient, so that is what I did. This is what happened when I met with the doctor in urgent care.
Doc: You’re fine. It’s just a bad test result.
Me: I have been experiencing worse (crushing) fatigue for the last two weeks as I’ve been fighting a cold and my muscle pain is pretty bad. I have been staying in bed two days recovering for every day up.
Doc: I think that we should put you on prednisone.
Me: I am very nervous about that. I’m already pretty immunosuppressed, and my pulmonologist has specifically told me to refuse steroids if I hit the ER.
Doc: Then we should start you on Cymbalta for the fibromyalgia pain.
Me: That is a drug that I’ve seen advertised that seems to have a lot of side effects. I just came through a rough patch because I was overmedicated this spring, and I’m nervous about adding another drug due to possible kidney or liver complications.
Doc: Can I at least offer you some antidepressants since you say you have trouble getting out of bed?
Me: I have fatigue not depression. It’s part of my illness.
Doc: Most chronically ill people have depression…
Me: Yep. I’ve dealt with anxiety and depression in the past. This isn’t depression.
Doc: But you will feel better.
Me: Hey, I’m not here seeking help with my illness this afternoon. I got sent here by rheumatology because of a high liver enzyme result, which you feel we should ignore, and I have chronic kidney disease. You want to prescribe a drug that will be cleared by one of those two organs? I’m not comfortable with any more medications without talking to my other doctors first. (I start edging towards the door to escape this frustrated pill pusher… maybe he just is excited to have a patient with a rare disease and wants to contribute, but I am out of here!)
Seriously, I do feel like I am living in a soap opera half the time that is being directed by my bossy cat. A soap opera staring yarn, of course!
That little episode put me back into bed for another day, but I was strong, I felt informed about my illnesses, and I didn’t allow a strange doctor who was dismissive of test results to prescribe me new medications. I have grown. My thinking about what is acceptable medical care has crystalized, and I feel empowered. I will talk about these drugs with my current team, and there will be a consensus decision before I start anything new.
Over the weekend I decided to double my dose of krill oil and to eat a banana every single day. 10 days later I am over the cold, I feel much better, my muscle pain is almost gone, and it seems I am through the flare. Yippee!
So, four years into this ugly disease where am I at? I am stable! The drugs that I am on have greatly increased survival rates for systemic sclerosis patients. My skin has softened some and I have pretty good function. My Raynaud’s is well controlled. My lungs, heart and kidneys have improved and my hypertension has vanished. My GI tract continues to rule my life, but I have gotten better control with a careful diet. Fatigue and pain stalk me continually, but I was thrilled to hear this week that my eyes have also improved since my ophthalmologist started me on krill oil. Hug a krill, everyone!
I have grown, and I am stronger for it. There will be many more adventures and bumps along the scleroderma road, but I am good. My priorities have shifted, and my values have clarified. I value the small things, have lost interest in making money, and budget my time ruthlessly. Scleroderma as a personal growth plan. Who knew?
Tomorrow I go in for the repeat blood tests to see if that enzyme is now back into normal ranges.
If there is one true thing about scleroderma, it is that it never stays the same. I think of it like the weather or road conditions; as soon as you think you’ve figured out what to wear or the best route to drive to work, things change. If you are dealing with scleroderma in your life, you just learn to roll with the punches. One day you feel fine, and the next one you have brain fog, your knees won’t bend, and gastritis has come to call. One night my hair just started falling out and strands began snowing down onto my shoulders and arms. I didn’t know if I should laugh or cry…
Ugh. This is scleroderma. Bad days come and go, plans shift, and life goes on.
Here’s the deal: I’m doing much better! I’m having a lot of good days!! After months of struggling my doctors and I realized that I needed to go off some of my meds because I was getting much better! My lung volume has increased, my heart is looking normal, and my blood pressure is down. Bam! Time to start getting some exercise, don’t you think? I bought a Fitbit and slowly began to increase my daily steps until I could do 5,000 steps every day. Then I began to increase my active minutes and now, at the end of July, I am logging 3 days of exercise a week. This is huge, huge, huge!! Yay, Fitbit!!
If you slogged through any of my June posts (Science and the Scleroderma Girl) you know that I maintain a log of my symptoms, diet, and other data that occurs to me. (Yep. Weather fronts do make it harder for me to breathe. Who would have suspected that! Thank you log book!) This month I added bananas to my diet to see if they would help reduce muscle pain. I think they’re helping, and getting exercise probably helps too. Yay, bananas!
When I bought this oil on Amazon I noticed in the comments by other customers that they used it on their scalps to help hair grow. Who knew? Maybe that is a thing, I thought. I checked in the scleroderma online forums and decided to oil my scalp once a week. Now, at the end of July, I am happy to report that my hair seems to be growing back. Yay, castor oil!!
Today was the last day of July. It was a pretty good month for me and my scleroderma. There were some definite bumps during the month, but over all the patient scientist approach to managing my trio of autoimmune diseases is paying off for me. Exercise, bananas, and castor oil were big positives for the month. The negatives were discovering that I can’t have any sunshine on my skin, and I absolutely can’t cut down on the stomach acid reducer med. Oh, well, even negative results are good to know.
Yesterday I bought a new data notebook. I have some ideas about some new stuff to experiment with…
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?
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.
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:
Once you feel like you understand the design of experiments it is time to hunt for answers to your own questions in published research studies. I explained how to do this and shared some of my favorite links in this post.
The reason I talked about research and the tools you need to look at what is published out there is because I had to make more hard choices about my own treatment. Having more information helped me with these decisions.
Closing down the show was AP Therapy and leaky gut. I’ve been informed that there wasn’t enough venom here for a rant, but I did try.
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.
Antibiotic Protocol is an alternative medicine therapy for autoimmune disease. It certainly has a following. Check this out. There is more information on it at the Arthritis Foundation. It seems to be loosely associated with “Leaky Gut” as it links chronic autoimmune illness to microbial sources originating in our intestines. The shaky model and vague language involved in leaky gut has landed it on the pseudoscience list at Wikipedia.
This has been a really hard post to put together. I have all these little memories and reactions rolling around in my mind, and I struggle to link them together in a meaningful way. Here are some of the things that have happened and my gut reaction (did you see what I did there?) to them:
I have a friend with lupus. She has been struggling for years, is on disability, and is clearly in trouble. She is losing weight, her hair is falling out; she is in the care of a nutritionist who has her on severe dietary restrictions and antibiotics to treat her condition. She eats no dairy, gluten, meat, alcohol, or sugar, and continues to take her antibiotics without fail. She is not getting better. My heart breaks every time I see her.
My dermatologist placed me on doxycycline (one of the antibiotics used to treat scleroderma in AP Therapy) right after my diagnosis. A year later my lung disease was moving so quickly that I was actually referred to palliative care. I stopped the doxycycline, my rheumatologist boosted the immunosuppressive drug dose, I was given a new drug for my vascular disease, these new drugs kicked in, and today my lungs look great. Good bye, palliative care!
I visit an online support group for scleroderma patients where some people are just devoted to antibiotic therapy. They can be very aggressive in promoting their message and have even private messaged me trying to convince me to switch treatment protocols. Huh? This is kind of extreme. I’m always wary of fanatics because it is more about “winning” and gaining converts…
So, I already have my back up about AP Therapy. The diagnostic antibodies that I have are to a specific region on my chromosomes (centromeres and kinetochores) that is involved in cell division. Bacteria have their genetic machinery organized very differently from me; why would the defining antibody in my illness be towards an antigen not found in bacteria? (Goodbye leaky gut… it was nice to know you!) That doesn’t mean that I can’t have the medical condition of increased intestinal permeability; correlation doesn’t necessarily mean causation. It also doesn’t mean that antibiotic use doesn’t help some people as the drugs also have anti-inflammatory and cartilage protecting properties, and there is research that shows it helps some patients with rheumatoid arthritis.
Here’s the deal: there are better drugs and treatment options. If you have a mild form of the disease, maybe AP Therapy is what you need. On the other hand, systemic sclerosis is a potentially fatal disease and if it is advancing rapidly the correct response is to go big: use the drugs that have the highest success rate. I feel like I’m a walking poster child for the success of current treatment options. The three drug cocktail (Myfortic, Plaquenil, Losartan)that my doctors are maintaining me on has reversed my lung and heart damage.
Crap, do I sound like a fanatic? Darn. I was worried that this would happen.
I told you, this is a hard post to write. Let me just say I would never, never PM someone insisting that they need to change their treatment plan. Who am I to project my reality onto another person?
What I really mean to say is to think like a scientist: collect data, keep a symptom log, ask questions, assemble a team of doctors to help you, and pursue treatment options that have solid research-backed results that you are comfortable with. Keep collecting data, and don’t be afraid to change if things aren’t going well. There is no best one-size-fits-all treatment plan, but play the odds that are the highest until you get better information. If what you are doing is working, keep going!!
Let’s be honest: everyone with scleroderma wants to feel better. We trade info constantly, and almost everyone has a supplement that they have found is really helpful. It’s tempting to load up on everything at Vitamin Cottage that might be helpful, but you should know me (geeky science girl here!) by now… if it doesn’t have promising research studies to back up the claims, I’m going to pass it up.
“Under no circumstances are you to let the sun hit your skin!” directed my dermatologist. “Are you getting enough sun?” asked my rheumatologist. “You need the vitamin D and the natural kind you make in your skin is best…” Ugh. How am I supposed to figure out stuff like this? Because I keep a symptom journal I have discovered that sunshine makes me sick: rash, fatigue, pain. Sorry rheumatologist, the dermatologist wins this round. I started taking the vitamin D supplement not long after I was diagnosed and noticed that it helped me with depression. Who knew? My internist monitors my vitamin D levels to make sure that my current supplement is enough.
I was really late to come to this party. Struggling with an out-of-control Sjogren’s flare last winter my ophthalmologist suggested that I take fish oil to improve my tear production. Okay, my tears are just horrible. Not only do I barely produce any tears, but what I have flash evaporates right off my eyeballs lickity-split. I didn’t even bother to check the internet before I gulped down some fish oil tablets from the grocery store. Wow!! The next morning I woke up to eyes that didn’t hurt. Then I noticed that my neuropathy was better. Oh, yeah. There was that one study that said that omega-3 oils helped with migraines, and my ophthalmologist mentioned that he took it for tinnitus… It gets even better: it helps reduce blood clots too! Every time I end up in the ER they go on a blood clot hunt… this is probably a good supplement to add to my diet, huh. It also helps with Raynaud’s, but the effect was seen with people with primary Raynaud’s. Hey, it was a small study. I’m taking the krill oil anyway!
Things were really bad for me last spring. I had brain fog and dizziness that left me afraid to drive. The fatigue was unreal and everything hurt. My BKB Deb advised me to try tart cherry. Off to the internet I went. Oh. It is a real thing. I found this article, and this one, and one showing memory improvement in rats. Since I was miserable and couldn’t remember what a memory was, I took tart cherry out for a spin. Woohoo! I woke up the next morning feeling *normal*. I had energy, and the brain fog was gone. In the days and weeks to come I continued to feel pretty darn good until… the kidney function tests came in. My kidney function dropped 15% in just 6 short weeks and the tart cherry fun came to a screeching halt. The notation “chronic kidney disease” was added to my chart and that was the end of that. I stopped the tart cherry, accepted feeling like road kill every morning, and my kidney function crawled back up to a higher score. Whew! Talk about dodging a bullet!
There is a lesson here. Take the supplements that your doctors suggest. Check out other supplements before you start taking them, and let your doctors know before you start. I talked over the tart cherry with my internist and rheumatologist before I started, and they caught the kidney function drop pretty quickly because I was going for bloodwork every month. Just because I ran into trouble doesn’t mean that you will. Keep a symptom/food log and monitor like crazy. If your doctors know what you’re up to they can order testing just like mine did. Saved by the blood test!
If anyone has another great supplement I should check out, let me know!
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.
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!!
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…