Bump in the road

I’ve put off writing as if not putting the words out here would change what is happening.

I still believe that my disease was in a state of remission, and I do believe that I will achieve it again. When I saw my rheumatologist back in September I had no symptoms of my disease and my inflammation markers were normal. I had experienced no pain since July and didn’t start having any symptoms until the middle of October. My doctor said remission could be months or could last for years. And I said that I would ride this wave as long as I could.

I have been trying to ignore the signs but as they increase it’s become difficult.

Maybe my body held out through all the stress of bringing my oldest daughter home from Colorado, my son going to boot camp, and my youngest daughter starting high school and now it’s at a point where it can’t do it anymore.

I need to see the positives as doing anything else would take me down a rabbit hole that I have no intention of going down.

A huge positive is that I’ve started a new job which I firmly believe is a gift. Being in a place of health and fitness where I can encourage others is my heart and passion. I’m grateful every day for this opportunity.

Even though it’s painful to walk right now I’m thankful that I have legs to do so. Even though my hands are swollen, and small every day tasks hurt I’m grateful that I can still grab the weights after work, push through a workout, and get a little reprieve from the pain when I’m done. Even though the fatigue is draining, I am energized at work and know that I can make a difference to others who suffer more than I do.

I need to remember that I must listen to my body and rest when I need to.

So for now I am waiting for our insurance to approve the next therapy and I’ll begin taking meds to slow down the disease progression.

This is just a bump in the road. #makeitcount #rasucks #rheumatoidarthritis

Black cumin, miracle noodles and possibly failing meds

The title sums up what this post is about. If it seems to be all over the place, and that is where I have been lately. I have been dealing with much more prolonged pain than “normal.” It can be consuming sometimes when I let my mind wander. Are my meds working? How much pain is normal? Should I really expect to have completely pain-free days? Are my meds working enough to slow the disease progression? Are my joints sustaining permanent damage because I don’t want to switch meds? Am I only hurting because it is cool, rainy, I’m too stressed…..

I admit I have been struggling lately with a lot of the aspects of the disease. I am still able to workout and that is a blessing. I actually feel better when I’m up and moving or at the gym than when I’m sitting at my desk on the days I work in the office.

I continue to research alternative or adjunct therapies to slow the disease and fight the pain and inflammation. I really do believe that gut health plays a major role in auto immune diseases like RA. I also believe that there are answers out there that we just haven’t found because it is easier for drugs to mask our symptoms and pharmaceutical companies want customers not cures.

I ran across a double blind study the other day when researching RA and alternative treatments. Nigella sativa or black cumin has been studied for it’s potential to significantly reduce pain and inflammation in people with RA. Although called black cumin it is not the same as ordinary cumin used in cooking. It is also known as the Blessed Seed.

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Nigella Sativa or black cumin is an annual flowering plant native to South and Southwest Asia. It is used as a spice and had a unique flavor. This plant has been used for its therapeutic properties for centuries.

Its oil and another extract, thymoquinone have been and used extensively for their antioxidant, anti-inflammatory and hepatoprotective qualities in traditional medicine. Considering these benefits, scientists in recent years have been investigating its use in treatment of many common diseases.

In order to understand the anti-inflammatory activity of the oil extract of Nigella sativa, a study was conducted using a group of 40 arthritis affected females. They were divided into 2 groups- a treatment group and a placebo group.

The treatment group consumed Nigella extract containing capsules. After 6 months, a reduction of inflammation in the subjects was seen and evaluated through clinical examination and laboratory investigations

It was found that there was a significant decrease in cytotoxicity and inflammation status in the treatment group. It appears that using Nigella sativa has the potential to reduce cytotoxic activity and relieve inflammation making it a potential adjunct therapy to traditional RA treatments.

I researched dosage and found information for crushing the seeds into a powder and using it on food daily. I started using it today. I crushed up some seeds, which was no small feat! I tried crushing by hand using a mortar and pestle. I dumped the entire one pound bag into my blender attachment on my Ninja and nothing happened. The I decided to try the small smoothie attachment to the Ninja and had success!

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So then I needed to decide what to put it on and try it. What better to try than on my “miracle noodles” – in this case “miracle rice.”

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Miracle noodles are made from the Konjac plant, Miracle Noodle and Miracle Rice are 97% water and 3% soluble fiber – called glucomannan — (plus a natural calcium additive to help the noodles keep their shape). You can order them here Shirataki Noodles

Glucomannan is a highly viscous, soluble fiber. According to a double-blind study published in the American Journal of Clinical Nutrition, patients who were given glucomannan daily (vs placebo) saw a 10% decrease in total cholesterol, 7.2% decrease in LDL cholesterol, 23% decrease in triglycerides, and 2.5% reduction in systolic blood pressure.

These noodles are a high-fiber food yet have no calories and no carbohydrates. The Glucomannan fiber in the noodles is a type of viscous fiber (soluble fiber). The viscous fiber in Shirataki noodles is known as a prebiotic, meaning that it is indigestible to humans. It provides no calories or nutrients to human cells, but nourishes good bacteria in the digestive system. This fiber also moves through the digestive system slowly and offers digestive and gut health benefits.

The texture is not like a traditional noodle for sure but if it will help improve my gut health and possibly get my RA under control I can eat it!

I made some miracle “rice” and then added butter and 1/2 teaspoon of black cumin. The texture of the miracle “rice” is definitely one to get used to but this tasted pretty good. I guess we’ll see if it helps.

I don’t want to have to change meds and stop taking the Xeljanz so if eating miracle noodles and consuming black cumin daily helps then I’ll continue.

I’m still eating a ketogenic diet which is also supposed to have positive effects on my pain and inflammation.

I go to see my rheumy on July 5th so as I see it I have time to test out the black cumin and miracle noodles and see if they help!

Don’t take your health and ability to move pain free for granted! #makeitcount #RAsucks