Chronic inflammation – Yarn, Books & Roses

The Scleroderma Chronicles: The Blue-Lipped Zebra gets some MRIs

I feel like I am in a race now. I absolutely, positively need some answers to all of my little medical issues, but I have to hurry, hurry, hurry because the Covid-19 virus is already in my state and I think that in just a matter of days or weeks the health care machine is going to be devoted to critical care and the pandemic response. I hope none of my doctors get sick. I really like the nurses in their offices. Gee, this is starting to get to be really stressful…

Let’s take a little break to smell the roses… umm… the orchids. Look at how nice my rose gold orchid is doing in the living room these days.

So, this is the situation as I got into the car and drove to medical clinics FOUR different times last week. By Saturday, when I needed to drive to a facility an hour away for MRIs of my right hip and left foot I was starting to feel like I was pushing my luck. The BLZ totally wanted to stay in bed. I was worried about having to go through an urgent care waiting area full of sick people because the last time I did that I came down with… THE FLU. Ugh. The place is sure to be crowded with weekend warriors and sick people who were afraid to take off work on a week day…

When I got there the parking lot was almost empty. What?! What is going on? I checked on my phone to make sure I was at the right facility, and then went inside to see if I could find someone. The place was deserted!! The only person in sight was the security guard in her glassed-in station. I checked in with her to discover that the entire facility was closed except for… wait for it…medical imaging!! Woohoo!! I clomped down to the basement for my 90 minutes in a MRI machine feeling pretty good about my chances of avoiding this new virus that I’m now sure is gunning for me. All went well, I headed home, fixed myself a little dinner, popped a couple of gummi bears into my mouth while I was cooking, and BROKE A TOOTH!!

How about another little orchid break? You can see how big the monster is compared to my other orchids.

Sigh. Now I have another two medical appointments because the tooth is sure to need a crown. Plus I have two more testing appointments next week which will really be starting to push the safety margin. The BLZ is not happy.

Today I saw my wonderful dentist who let me know that gummi bears are notorious for hurting teeth. Who knew? He fixed my tooth and gave a computer print-out for a type of safe gummi bear, and before I left the office I saw that the MRI test reports were ready. That means my rheumatologist already released them. I read the reports in the car in the parking lot on my phone before heading home. (Although I wanted to go get my gummi bears!!)

Background: I have been struggling with painful and swollen joints for at least three years now. My last rheumatologist tested me for inflammation markers (C-Reactive Protein, to be exact), and since my level is normal, she concluded that my joints were fine, that I was a whiner, and the symptoms that I reported were exaggerated. (!!) I wrote about the last awful appointment I had with her in this post. After I had recovered my mojo and began to take action to improve my situation I wrote about my old rheumatologist and my swollen joints here. My new rheumatologist, who I saw last week, ordered these MRIs to check some lumps on my foot and my bad-boy hip. She wondered out loud why no one had followed up on my first appointment to the hip specialist. I think I’m going to be much more happy with this rheumatologist.

Oh, my. My hip joint is really bad. The word severe was used. There is edema in the bone! There is fluid around the joint that is pushing out into a bursa towards the front inside part of the hip joint. (The very bursa that I asked about before when I saw the orthopedic specialist. It couldn’t be involved, he assured me, because that would be very uncommon. The BLZ is braying “I told you so!”) A tendon on the outside of the joint is partially torn. The synovial lining around the joint is inflamed. Even joints in my ankle (that don’t bother me) are inflamed and have fluid in them. Stunned, but feeling absolutely vindicated, I began to drive home. Before I had even gotten to the freeway the new rheumatologist was on the phone to me. She is sending me back to the hip specialist and I need some steroids into that hip joint as soon as possible. And maybe surgery. And I should go back to physical therapy. The BLZ decided we should mention my knees later on… Oh. I almost forgot. I also have two benign tumors on the bottom of my foot that will require another specialist. Did you hear that thud? That was the BLZ flopping over backwards in dismay.

After a little knitting this evening the BLZ is feeling more the thing again. Look at how far I’ve gotten on the knitted kitten!

Tomorrow I head back to the clinic in the north to get a pulmonary function test and to pick up the equipment for overnight oxygen level monitoring. I won’t touch anything, BLZ. It will be okay. We are brave! We are on a roll now and we are getting some answers!

Be safe everyone!

Science and the Scleroderma Girl: Supplements and Me

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.

Tumeric (and Curcumin)

So many people have advised me to try turmeric. Cruising the internet I found lots of information from sites that are devoted to nutrition, health, or supplements, but I wanted to see hard data. Yep. Pretty darn easy to find. This controlled experiment found curcumin worked better than a traditional pain med following a dental procedure. Another study looked at migraine pain and the levels of two inflammatory markers (IL-6 and C-reactive protein); the result was that curcumin and omega-3 fatty acids did reduce inflammation. Wow. That sounds pretty promising. Finally, since one article I read suggested that curcumin could help with renal disease I hunted for that…this research showed that curcumin is beneficial for kidney disease. I scored myself some curcumin and I think that it is helping, but I have to be careful with my gastritis-prone stomach lining.

Vitamin D

“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.

Omega-3 Fatty Acids (Fish or Krill Oil)

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!

Tart Cherry

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!

Knitting — Oh yeah. I also do a daily supplement of knitting. 🙂

If anyone has another great supplement I should check out, let me know!

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!!

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!