Time for change

It’s been a while since I have written. Life has been incredibly busy.

In my last post I had come off Kevzara because of an allergic reaction. After that my rheumatologist put me on Olumiant, a once daily pill similar to Xeljanz. It’s a JAK inhibitor with an added black box warning of deep vein thrombosis and pulmonary embolism, in addition to the typical scary side effects that all the biologics have.

Similar to my experience with Xeljanz I felt some improvement in about 3 weeks. And similar to my experience with Xeljanz that improvement was short lived. I had a UTI, also a common side effect, and had to hold the meds while I took the antibiotics. Also similar to Xeljanz I began holding fluid in my legs. And not just a little fluid. About 8 to 10 pounds heavier with swollen feet and ankles every day. By the end of the day I was loosening my shoe laces to the point where they barely tied.

My rheumatologist said to stay on it. The medicine didn’t say that fluid or weight gain were side effects but that it’s too new of a drug to really know all the side effects. Perfect….

In the meantime I sought the help of a naturopath doctor. In our first 2 hour meeting she looked over some bloodwork I gave her and identified an issue that predisposes me to blood clots. So my rheumatologist was given the same bloodwork and never questioned my elevated homocysteine levels. And is not concerned that the meds have clots as a side effect or just didn’t look at the info I gave her.

That’s the final straw for me. I have failed methotrexate, Xeljanz, Humira, Kevzara and Olumiant. All due to side effects and no benefit.

I told my rheumatologist that I was stopping the meds. The naturopath shipped me a turmeric tincture to start. I’ve been taking turmeric capsules but they’re drug store variety, and not in this strength.

In the 5 days off Olumiant the fluid is almost gone. I started Tumero 10 mg 2X a day on Friday.

I’m hopeful and optimistic that the naturopath will help get to the root cause of my disease and treat it not just my symptoms and suppressing my immune system but bringing it into balance.

I know the answers are out there. It’s time for a change since what I’ve been doing isn’t working.

Fear

I’m 3 months into the autoimmune protocol diet. The knowledge of food allergies has helped me fine tune my eating even more. I added back two food groups and will be tweaking to determine if they’re inflammatory. My pain is coming back to levels I haven’t been having, and with the pain comes fear.

I’m afraid of how bad the pain gets. I’m afraid of the medications and their side effects. But more than that I’m afraid of losing my mobility.

I’ve been off the Kevzara for a month trying to rule out an allergic reaction. I’m trying to decide along with my rheumatologist if I will try it again or go on to the next step.

My prescription vitamin blend came in and I’ve been taking it for two weeks. I’m hopeful that they will be absorbed by my body and begin to help. We’ll do some blood tests in 3 months to see.

Healing my gut and my body will take time, patience, and persistence. I know that all the damage was not done overnight and will not go away overnight.

In the meantime I continue to move and strengthen my body and I am thankful that I can.

DNA, food allergies and vitamin deficiencies.

Before the end of the year I had a bunch of bloodwork done which included DNA testing, standard tests such as cholesterol; and hormone, vitamin, and allergy tests.

I got all the test results back last week. I believe all the information I now have will help me in the treatment of my disease.

The DNA results are interesting. I have information that can be given to my rheumatologist as well as other doctors to help make decisions about medications based on my genes.

I found that I have two food allergies. I am allergic to milk and egg whites. In the past month or so I eliminated both milk and eggs on the autoimmune protocol diet (AIP diet) so keeping them out of my diet permanently should be fairly easy.

I did some reading about milk and egg allergies and how they manifest, and there is some evidence that they can cause an autoimmune response. So hopefully keeping them out of my diet will settle my immune system down some.

My vitamin levels are out of balance as well which is not uncommon in RA patients. My vitamin D is very low, as is my vitamin A, and my vitamin C level was almost nonexistent. I couldn’t believe it because not only do I eat copious amounts of fresh vegetables and fruits, but am religious about taking my vitamins and supplements. Thanks RA for yet another fun aspect of the disease.

I’ll be starting a prescription vitamin blend based on my needs and genetic make up. So my levels will be brought to the best level for me not the broad government standards. It will also have a substance to help me absorb them since my body is not doing it well enough on its own.

Once my vitamin D, C, and A are brought up my hormones and other levels should become balanced and I should feel a lot better!

I’ve stayed on the AIP diet through the elimination phase and just added legumes/beans back to see how my body responds.

I also have a call into my rheumatologist because I believe I had a reaction to the last Kevzara injection I did on Tuesday. I’ve had similar site reactions like I did with Humira, and had a significant rash/hives within 24 hours of the last injection.

We’ll see if she wants me to continue treatment or hold off. I would be willing to take a break from meds and pursue the AIP diet knowing that the 2 food allergies could have been impacting me greatly.

I still believe remission is possible and that my body has the ability to heal and be well.

I’m definitely persistent enough to keep trying.

AIP meal prep

Staying on the AIP diet so the long process of gut healing can continue. Being on an extremely strict diet is tough but I’ve found it’s getting easier. But I have to be prepared.

Sunday is my meal prep day. Lunches and dinners are easy. Grass fed, grass finished beef and wild caught seafood with copious amounts of vegetables. I drink kombucha daily and snack on fruits. Breakfast has been the challenge with no grains, dairy or eggs involved. Thank God for Pinterest!

This week my meals are looking good.

I made a bunch of AIP compliant veggies in my wok and roasted some sweet potatoes in the oven. I have some grass fed, grass finished Kobe beef hot dogs for a few meals, and cooked a grass fed, grass finished porterhouse steak in a cast iron pan in the oven.

I eat some kind of seafood every day. This week is wild caught salmon and wild caught tuna to go with either spaghetti squash or sauteed spinach.

Lunches and dinners are packed full of vitamins. I buy organic veggies whenever possible too.

After getting all that finished I moved on to breakfasts. I tried two different recipes this week. I opted for Tostones (fried plantains) and pumpkin spice macaroons made with dates, pumpkin puree, and shredded coconut.

I can assure you these are both delicious!

So the journey to heal my gut and balance my immune system in hopes of remission continues. And the best part is that I’m not feeling deprived and I’m eating nutritionally sound food.

Don’t take your health for granted.

Living your purpose.

I started my new job on November 5th, and received lots of confirmations along the way that I was making the right decision to leave my marketing job of 17+ years.

I’m loving the opportunity to be in the fitness industry and part of the Anytime Fitness family.

There’s a lot to learn and every day presents new opportunities for that.

I am excited about the New Year and the potential for people to start their health and fitness journey with us.

I knew I would be happy signing people up for a gym membership, but had no idea how affected I could be by one person until today.

With her permission I’m sharing a post that she shared tonight in a private group that we both belong to. Nothing happens by chance:

“#StartingOver #Day1

So …. i did this thing today… i joined Anytime Fitness.

I decided that I needed to push thru all my anxiety and do something to benefit ME..

Anyone who doesn’t know my anxiety issues it truely is debilitating at times 😢 i took baby steps with the support of my friend.

I literally had to make each tiny thing an accomplishment.

Step 1 i submitted a form for information on their current special.

Step 2 i made the appointment.

Step 3 AND I RECOMMEND THIS TO EVERYONE….. research your health insurance bc mine offered discounts for joining.

Step 4 i walked through the door to a new place by myself (King Kuan can vouch this is a HUGE struggle for me)

Step 5 i signed up… and met a wonderful woman carol who showed me a full body workout I could do until my body assessment on Tuesday.

Step 6 i showed up this evening a got an awesome 1 hour workout in.

I have a lot of support but I realized i need professional help to get me out of my funk and back on my wagon.

So, tonight my journey begins again…

#icandothis #maketimeforme

I weighed myself this am at 212.6lbs. (That means i gained almost all the weight i lost last year)…. i did it before ill do it again.

#strongerthanmyexcuses
#lightenup”

I cried when I read this. I know that all things have come together, not by chance, for me to be living my purpose today.

My fitness journey that I began several years ago led to a passion for lifting weights and the gym.

The diagnosis of Rheumatoid Arthritis shook my foundation, but then led me to take the course to become a certified personal trainer in hopes of helping people with chronic pain and disease.

My own personal trainer/nutritionist told me about the owners of Bel Air Anytime Fitness and led me to put in an application there.

The owners interviewed me and told me they needed to hire a general manager. They have given me the most amazing opportunity and gift.

I am grateful. Because today the courage of one beautiful lady who walked through the gym doors has reafirmed that I’m truly living my purpose.

You never know what people are going through. Her story touched my heart. And I’m thankful to be part of her journey.

I was reading an article a while back about living your purpose. I am glad I saved it. Here’s 20 signs that you’re living your purpose. I know I am.

Here are 20 signs that you are living your purpose:

*1. You no longer have that nagging feeling that a big piece is missing in your life. You have found what makes you whole.

2. You have gone from being stuck to knowing that you are on a meaningful path that gives you true fulfillment.

3. Work brings joy instead of sucking energy out of your life.

4. You stopped doubting yourself. You feel confident and good about your choices.

5. Uncertainty, insecurity and worry are old patterns. You feel purposeful and know that the world needs you to be your best.

6. Instead of seeking clients, they are seeking you. Your business and income are flowing.

7. You no longer feel like you’re hiding part of who you are. You are authentic and true to your soul.

8. You are patient with yourself and your family because you are OK being certain with the uncertain. You trust that the next step will be given to you.

9. You’ve stopped looking for approval from those around you. You have found your voice, courage and confidence.

10. You feel comfortable selling your products or services because you know that people need you.

11. You stopped playing small and feel vibrant and alive. You have tapped into the knowing that you have so much to give.

12. You have become fearless. Your fears are now your best friends and they always point you toward the next step.

13. Frustration from not meeting your potential has vanished. You know you are meant to do great things and have so much love to share.

14. Change is no longer a fear. You have seen that change is what allows you to create a lifestyle that you love.

15. You invest in yourself and your business and the more you do so, the more others invest in your services.

16. You stopped struggling. You live your life passionately both personally and professionally.

17. You no longer feel like you are selling your soul for a paycheck. Your income and your purpose are in alignment.

18. The fear of what others might think of you has been replaced by the belief that people need your gifts and talents.

19. You finally stopped putting your life on hold and know you are living your destiny.

20. You have come to know that happiness is not only your right, but part of your life’s purpose.

*mindbodygreen/living your purpose

I encourage you all to seek your purpose and pursue it. It’s life changing.

We need a cure

A day in the life of someone with uncontrolled RA….Another rest day from the gym today. Something is going wrong. I stumbled getting out of bed this morning because the pain in my feet was so excruciating I couldn’t stand.

I pulled myself together and made my hair appointment then did the grocery shopping, and grabbed a few other items for Christmas. I can’t close my right hand, more fingers are affected, and my wrist is very weak today. Picking up packages of meat and other items was difficult.

I got home and put groceries away. Too tired to meal prep. Took a nap. Need to get my meals done but have no energy and it is hurting to be on my feet.

I have my new meds in the refrigerator but haven’t been trained to administer my injection. It’s not an automatic injector this time but a syringe. I’m super emotional because I want the autoimmune protocol diet to help me get into remission but on the other hand I want relief from the pain. I’m terrified of the meds and fight taking them. But when there is pain and inflammation permanent joint damage is taking place.

All of this after three great workouts in the gym this week. I know exercise and lifting weights is good for me so it’s even more frustrating when I can’t and my body calls the shots.

All of this is not for pity but to raise awareness. Arthritis research is seriously underfunded.

From 2013–2015, an estimated 54.4 million US adults (22.7%) annually had ever been told by a doctor that they had some form of arthritis, rheumatoid arthritis, gout, lupus, or fibromyalgia.
By 2040, an estimated 78 million (26%) US adults aged 18 years or older are projected to have doctor-diagnosed arthritis.

Arthritis and other rheumatic conditions are a leading cause of work disability among US adults.
In 2013, the national costs of arthritis were $304 billion overall.

  • Arthritis-attributable medical costs were $140 billion.
  • Arthritis-attributable lost wages were $164 billion.

Don’t ever take your health and ability to move for granted. Go do something every day and make it count!

#makeitcount #mic4d #rasucks #rheumatoidarthritis #curearthritis

Jumping in…AIP diet

Admitting that I’m not feeling great is a big deal for me. After putting it in writing I have decided to continue my research into gut health and autoimmune diseases. I still believe that my regimen was working before and that this is just a bump in the road.

I’m jumping in and starting the Autoimmune Protocol (AIP) diet. I had researched it before and thought there’s no way I can follow something so strict. I have been a very disciplined eater for several years, but this takes it to a whole different level.

I’m going to focus on the things that I can have instead of the things I’ll be giving up.

I can have grass fed meats and wild caught fish. I can have tons of good vegetables and fruits. I can have kombucha and other fermented foods. And there’s a ton of recipes for sweet treats that only contain ingredients that are allowed.

Here’s where it gets a little scary. I’m be eliminating these things for at least 30 days, some forever:

  • All non-Paleo foods (grains, legumes, dairy, processed oils, non-nutritive sugars, and food additives)
  • Eggs
  • Nuts and seeds (including cocoa, coffee, spices, and all other products derived from them)
  • Nightshades (potatoes, tomatoes, tomatillos, eggplants, peppers of all kinds, goji berries, ashwagandha, and all other products derived from them)
  • Alcohol
  • Nutritive Sweeteners (except in extreme moderation, like for special occasions only)
  • NSAIDs (including aspirin and ibuprofen)
  • More than 20g of fructose per day (fruit is the highest source of fructose on the autoimmune protocol)
  • Yeast (those with gluten sensitivities may cross-react with it)

I’m in. It’s helped thousands of people put autoimmune diseases in remission. If it means healing I’ll do whatever it takes.

So meal prep was challenging today but I got it done. I’m thankful for my husband who helped me get all the groceries I needed last night to pull this off effectively. He took me right to the door of the store while he dealt with loading and unloading the Jeep in the cold, pouring rain that makes me hurt so bad.

I looked at my meals for the week and I’ll have adequate protein, good carbs (even without any grains), and healthy fats. And my calories will be up in a healthy range to allow for working out.

So here’s to the AIP diet and jumping in!

Progress

I took the last of only 3 Humira shots on July 20th. In June I started taking a gut health regimen in hopes of putting my disease into remission.

If there was any doubt that these products were working it’s gone now.

I’m pain and inflammation free since July.

I started with a prebiotic fiber that helps feed the good gut microbes. I began feeling better. After a few weeks I added the probiotics. More improvement.

I had an appointment with my rheumatologist a week ago. She did my exam and confirmed that my joints were free of inflammation as compared to before.

She asked what I was doing and I told her. She said that was good and reiterated that most of our immune system is located in our gut.

So if scientists have confirmed links to autoimmune diseases and gut microbes why wouldn’t we stand a chance in settling our immune systems down by bringing that back into balance?

I think in my case that’s exactly what happened.

Would it be true for everyone? I don’t know.

Is it worth trying? I think so.

We spend too much time treating symptoms instead of treating causes in my opinion.

I encourage anyone reading this to do the research. NIH has countless articles about gut health and the connection to numerous ailments from autoimmune diseases to depression and anxiety.

All I know it’s that my body and my blood tests agree right now. I’m definitely making progress.

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

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.