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!

Always something new

If there’s one thing I’ve learned since being diagnosed with rheumatoid arthritis it’s that I’m still learning.

There’s always something new to figure out. Lately I’ve been feeling pretty good. My pain is manageable (although nonexistent would be better), I’ve been able to workout hard, and I have been fairly healthy otherwise which is great considering I’m on immune suppressing drugs.

So what’s new? The last few weeks there’s strange things happening with my feet. My toes are either numb or they feel like they’re dislocated. I’ve read about both and they can occur with RA. Who knew?

Now for about a week I’ve been holding fluid in my feet and ankles. When it started I chalked it up to stress and being on my feet more than normal.

I gave it a week before emailing my doctor. She said it could be a side effect from the meds. So I have to stop taking my Xeljanz for a week and see what happens.

I’ve also read where RA can cause edema also so I guess we’re just trying to rule out the meds being the issue.

I admit I’m a little worried about how I’ll feel without the meds since they worked so quickly when I started them I worry if they will stop working as fast.

I guess we’ll see.

On a positive note I’m eating a ketogenic diet to see if it helps with pain and inflammation. I’ve not been on it long enough to know if it will help, but I’m hopeful.

And I just finished a 12 week workout program that was pretty intense. I was able to do most every exercise without modifying it and I feel good about that.

I am still learning. Every day is something new.

Love on each other and make every day count!

#makeitcount #curearthritis

Grit

Sometimes that’s what it takes. RA is a strange disease. Highly misunderstood. I don’t look sick. But I’m definitely not completely well.

I’ve been in bed the last two days allowing my body to concentrate on fighting whatever virus I have.

That is a delicate balance. Rest is good but not moving creates stiffness and pain in my joints.

So today since my throat wasn’t as sore and my ears weren’t hurting as much I ventured out of the house to the gym to get some exercise.

I have a lot of respect for my fellow RA sufferers. Grit. That’s what it takes to move some days. That’s what you need to keep RA in check.

Today I grit through the first half of my walk on the treadmill. It felt like I was walking on broken glass.

But here’s the amazing part….I grit through it and the pain backed off.

Did it leave entirely? No. Did it become bearable? Yes.

So I’m reminded that there will be days that I need to grit through it but it’s worth it.

Don’t take your health and movement for granted. Get up every day and just move. Do something, anything for your body.

#makeitcount #MIC4D #curearthritis

I will not give in

I try not to let the circumstances in my life get me down but sometimes it’s just so hard. I thought the issue with my medication had been resolved when I spent hours on the phone weeks ago. But alas…our healthcare is so messed up (and no I’m not looking for a political debate) that even though my doctor sent in the preauthorization that I was told would be all that was needed, my medicine has been denied. She is filing an appeal. We have up to 2 appeals and then the Independent Review Board will be involved. How about this…my doctor says it’s medically necessary so allow me to get my meds!! I’m beyond frustrated that some person in some office is calling the shots on my health! My doctor was told they (Caremark) wants me to try Kevzara injections. They are almost as expensive as the Xeljanz I’m currently taking through the samples my doctor is giving me, and there’s no guarantee that my body will respond to them as well. This isn’t a matter of trading a brand name for a generic. It’s a matter of being forced to change my treatment at the hands of my insurance company. Rest assured I WILL NOT give in. Game on Caremark. You’ll be well acquainted with me soon. I’ve also been sick for a few days and trying to fight off whatever I’ve got going on. No small task with a suppressed immune system lol. The drawback of my meds working so well is that it’s difficult for my body to fight infections. So I’m resting and not working out which makes me feel pretty down. I’m incredibly irritated with all of this. And right on time, as she always does, my earth angel texted me today. I love her to pieces. We don’t text a lot but she seriously comes through every time I’m reaching the end of my rope. I love you Dani! #makeitcount #MIC4D #curearthritis

Fatigue

fa·tigue

:

noun

  • extreme tiredness, typically resulting from mental or physical exertion or illness.

I think one of my biggest struggles with RA is the fatigue that is sometimes overwhelming.

I’ve been dealing with a flare and the fatigue is really getting to me. I’m not used to being so tired and sleep doesn’t help.

It also doesn’t help that I have a hard time falling asleep and staying asleep (also a gift from RA).

My rheumatologist has told me to balance exercise with rest and reducing my stress levels. The only one of those things that I can control is exercising.

So I continue to workout hard and try to get sleep when I can. The other night I slept for 12 hours and took a nap later that day. I was still tired.

My earth angel was a great encourager today as she sent pics from her gym and was kicking butt and being strong for me while I grit through my workout here. I love her so much 💕

www.annagracetaylor.com

It’s crazy how RA can affect so many things and I’m still learning a lot about the disease.

In the meantime I’m trying to stay healthy and enjoy sleep when I can.

#makeitcount #curearthritis

Persistence

Happy New Year! I waited until after the first of the year to start dealing with the insurance company for my Xeljanz.

Yesterday I spent two hours on the phone trying to get a straight answer about my meds and figure out how we would be able to afford them.

Two hours of frustration, the run around, no answers, some tears and then I got April on the line.

She was a God send. Several conference calls later including one to Pfizer, the drug manufacturer, we came to the best possible answer.

Believe me I have a sheet of paper with names, times and comments to fall back on.

It started with the prescription provider for our plan saying they need preauthorization from my doctor. I get that. My doctor knows it’s medically necessary so no problem there. What the plan rep couldn’t tell me was after the preauthorization was received exactly what my costs would be. She said it would be $3,882.67 for the 30 day supply.

I asked what would happen when I met the $4,000 deductible. She didn’t know. She said to call Cigna the insurance company.

Enter April.

April was very caring and went above and beyond to get answers. She went over everything and said she believed that our individual out of pocket maximum would kick in and help a lot.

She conferenced us back with the prescription plan provider and we walked through it all again. They believed that we would have the 80/20 split after the deductible. Which would be $776.53 for 30 days.

April dug deeper in the plan details. After the $5,000 individual out of pocket maximum is met she said we would not have to pay anything for the meds. They’d be covered 100%.

So we still have to have the $5,000 to pay out of pocket. We talked about the Xeljanz copay assist card I had already gotten. She conferenced us in with a rep from the Xeljanz patient assistance division. They confirmed that the card I have can be used to pay for the initial prescriptions until the out of pocket maximum was met.

So it seems we will be taken care of completely. Thank you April for your persistence and compassion!

Always be persistent. Ask questions. Keep digging!

Don’t take your health for granted. Love on each other.

#makeitcount #curearthritis