Reflecting on the past year.

This time last year I was just starting to experience my new “normal” of chronic pain. I was hurting so much physically and it was beginning to affect me emotionally as well.

I had not begun the journey of failed medications and depression that set in during the months to come.

RA is a nasty disease with no cure and little answers as to what causes it.

I’ve continued to research the disease and possible causes and believe that gut health does play a huge role triggering an autoimmune response in your body.

So fast forward a year and I’ve been doing a gut health regimen for a little over two months. I’m currently pain free and am off meds. I’m hopeful that I’m slowly getting my immune system balanced.

I continue to research. I watched a documentary called “Heal” the other night. It was interesting and I’ll be putting some of the things from the documentary into practice.

I’ll be looking into spiritual healing beyond asking for prayers. I’m going to learn more and begin to practice visualization and meditation to see my immune system as balanced and functioning normally. I’m going to try and find someone who practices sound therapy and see if I can get that done.

I believe that complete remission of my disease is possible and that my new “normal” I wrote about last year does not have to be my normal at all. #makeitcount #mic4d

Off meds and hopeful

After numerous side effects or allergic reactions to Humira my rheumatologist agrees my body needs a break.

The struggle with having to take meds has been a big one for me. I’ve continued researching information about gut health and autoimmune diseases and now I’m putting my theory to the test.

Since starting the Plexus products I’m feeling better than I have in months. My energy is up, I’m sleeping better and I have almost zero pain. I’ve been able to workout as hard and heavy as I did before RA started taking over my body.

I’m not claiming to be cured. I know better. But I’m hopeful and praying for remission.

It was a great relief when my rheumatologist called me this week and said to stop the Humira injections. Last Friday when I injected myself it hit me hard that I’m really just playing a game with this disease and the meds. After the awful burning stopped, and I pulled my shaking hand away from my leg, and my eyes filled with tears. Not because the shot burns so bad, but because I was putting more of the substance into my body that I can’t control, and am at its mercy as to whether I’ll have a serious reaction this time or not. It’s in there….for two weeks at least and there’s nothing I can do about it.

So I’m relieved that I can take a break and I’m hopeful that the link between gut health and RA will be realized in me.

If you’re interested in the products here’s a link to my website plexus/carolfrontera/home

I take the triplex products but started with Slim once a day. No risk because there’s a 60 day money back guarantee. Get in touch with me if you have any questions. Here’s to hope for health!

Gut health and hope

I know I’ve talked about gut health imbalances and the link to autoimmune diseases.

Believe me I’m skeptical of products that make claims that they can fix or cure my disease. I’ve researched and tried numerous products and foods with no success.

On July 4th I started taking Plexus slim after having lunch with a friend. I believe our meeting was meant to be because she did not meet me to discuss the products she distributes. Our conversation evolved and before long we were talking about my RA.

She told me about her best friend that has MS and RA and how she’s used these products and gotten off meds and is in remission.

This wasn’t a testimonial from someone who is thousands of miles away but someone who is a person that I could call if I wanted to. I was intrigued.

So I started using Plexus slim to only introduce one thing at a time in hopes of balancing my microbiome. There are numerous scientific studies about RA and gut health. A lot of RA patients have an overabundance of one particular “bad” bacteria and not enough good bacteria.

I started this before Humira could possibly work and noticed a difference within a week.

I firmly believe the product is working.

Humira takes time to work and I had only one injection before taking Slim and setting results.

My pain and inflammation is much improved.

I’ll be discussing this with my rheumatologist since she recognizes that we are seriously behind in research here in the US.

I’m still having issues with Humira and side effects. I’ll take another injection this Friday but if the side effects continue she wants to discuss another biologic.

I’ll be discussing taking a break from meds altogether and seeing if I can go into remission on my own.

I’ll be smart about it and certainly she can track my progress by blood markers.

If you’re interested in talking about the products I’m happy to have that conversation. I will be distributing them now myself. That’s how much I believe in the link to gut health and autoimmune diseases as well as other issues.

Gut health and RA

If you’ve shared in my journey you know that I’m constantly reading about ways to help ease my symptoms and possibly put my disease into remission.

A lot of information is out there concerning gut health or leaky gut and it contributing to, or triggering an autoimmune response.

I’ve looked into many products. I’ve read testimonials. I finally decided to give Plexus a try.

I’m only introducing one product right now so tracking any results will be easier. Since I’ve only had one Humira injection and that takes time to work it should be easy to attribute any symptom relief to my microbiome being balanced.

My rheumatologist said many of her patients look into gut health to ease their symptoms.

So here’s to hoping that this will be beneficial!

Weird side effects…

Because life just likes to mess with me lately… I spent a few hours in the ER with what appears to be an unusual side effect to the Humira I injected 2 weeks ago. I thought it was an allergic reaction but the doc and my rheumatologist think it’s an unusual side effect to the meds.

I admit I was a bit frightened because my lips started burning out of the blue, almost immediately my arms began to burn, and a rash started at my knuckles and went all the way up my arms to my neck. It burned really bad but was not itchy.

So they gave me a steroid through the IV and guess what? I had a rare side effect from it. 0.01% of people get it…go figure.

I was supposed to take my 2nd Humira shot tomorrow but my rheumatologist said to hold off and let my body settle down. I will take the shot next Friday.

In the meantime as a precaution I’m getting epi pens that I’ll need to carry with me.

On the bright side…the steroids will ease my pain for a few days.

What a journey. #makeitcount

Keep going

Lots going on lately…

I passed my exam to become a certified personal trainer and I’m still really excited about it. Formed an LLC and as soon as I get insurance I’ll be good to go to work with people. My first pieces of equipment came in and that’s pretty cool.

As for RA….well it’s kicking my butt lately. I’ve been off Xeljanz since mid May. I did 20 days on prednisone which gave some temporary relief. But now the all too familiar symptoms are back.

I started Humira on June 15th and I’m hopeful that it will work.

After 4 months on a ketogenic diet and no impact on my pain and inflammation I’m back to a “regular” diet. I’m happy with my strength gains in the gym despite the pain.

My earth angel Dani continues to be my beautiful inspiration and I’m so thankful for her love and friendship even over the many miles that separate us.

For now I will continue to move and be patient with myself when my body does not cooperate.

#makeitcount

Finding my voice

I don’t write these posts for sympathy or accolades. I write for my own therapy, the hope that I’ll gain new insights, and maybe help others that are suffering in silence.

I’m finding my voice. And in finding my voice, I’m also learning to let people in.

A lot has been going on physically that has changed me. Some ways for the better and some not. I’m dealing with bouts of depression, and that is new to me. I’ve always picked myself up and done what needs to be done when I felt down.

That’s not working for me any more.

Admitting that I’m feeling overwhelmed and depressed is hard for me.

I’m finding my voice and I’m finding strength from the support of people that I’m letting into my world. That is also new to me. In my adult life I’ve always had many aquaintances but very few true friends that I’ve allowed to get close.

I’ve always been the strong one. Determined. Persistent. The fixer. I’m realizing that it’s ok to admit that some days I’m not any of these things at all.

So, for the ones that I’ve let in that are sharing their experiences and insights, and not judging my perceived weaknesses…thank you.

Choice.

I got in to see my rheumatologist last Thursday. My pain has been constant and truly wearing on me. I feel as though I’m not the person I used to be. Trying to adjust to a new normal is exhausting and difficult. There are a select few that understand. I can’t explain it.

My Dr said that the Xeljanz is no longer working and to stop taking it. I’m on a round of prednisone and praying for relief soon.

My biggest fear is how bad I’m going to feel as I wait to see what the next course of treatment will be knowing that the biologics take 3 to 6 months to work.

In the meantime, I met with my nutritionist to come up with a plan since I decided to go off the ketogenic diet. So at least I should start to see my strength come back in the gym.

And I’m coming up on my exam to become a certified personal trainer. My hope is to pass and begin working with people that have chronic pain and disease.

My earth angel, Dani, was right on time as always…yesterday was an awful day. My pain was ridiculous all day and I didn’t go to the gym. Then I checked the mail and there were two shirts from Dani. On the back of each it says, “Every day we have a choice. Choose movement. Make it count.”

So today I chose movement instead of sitting here in pain. I made it count.

Love you Dani ❤ Thank you for your support, understanding, inspiration, and love.

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

Answers

So many things going on lately I’m not sure where to begin.

I had to go off the Xeljanz for a short period of time to rule out a potential side effect. The good news is that it doesn’t appear that the medicine was the culprit. The bad news is that I’m back on the Xeljanz and it’s not working as fast as it did the first time. It can take several months for it to work. Hoping I’ll respond eventually and not have to try other biologics.

I’m in a full flare and am trying to get through it reminding myself that it could be worse.

I honestly think the keto diet is keeping my pain level from being worse than it is.

I spoke with my mom today. Since my diagnosis of Rheumatoid Arthritis and Sjogrens Syndrome I’ve researched and read as much as I can about the diseases. My mom has symptoms of Sjogrens and I told her to ask her doc to do a blood test. Well guess what? Turns out I was right. Sadly she’s lived with this for years and nobody ever tested her for it. Not that it’s preventable, but they could have been managing her symptoms.

She will need to see a rheumatologist and I’m hoping they’ll run a full set of blood work to see if she has other autoimmune diseases. I’m glad she has some answers at least. And for me now I know there’s a genetic predisposition so I can educate my children to look for answers if they ever become symptomatic.

I’m getting through the course to become a a certified personal trainer. It’s hard taking classes right now but I’m determined to get this done and help others with their health. I’m super interested in the nutrition certification that I’m going to get once I finish this course. So many health issues can be helped with proper eating and exercise. I’m excited to pursue this!

Personally, I continue to eat keto and plan on keeping it up for a while. I feel like I have less “brain fog” and my workouts are going well. My strength is coming back in the weight room and I’m definitely more lean.

Now if only spring temps would arrive I’m sure my joints would feel better!

Don’t take your health for granted. Make it count!