Familiar pain

On June 19, 2020 it was one year since I stopped all my meds.

I have managed my disease naturally and as well as if I were on medications for 8 and a half months of that year.

It’s a bit disheartening to feel the amount of pain that I’m experiencing the last few days, but I can’t let that feeling take over.

I managed a workout tonight that was not as great as I’m used to. I’m weak. But as in the past I dug deep and got it done. And as in the past I had a few hours of pain relief.

I believe I’ll be able to get this back under control.

I believe I’m still on the right path. This journey is not linear and never will be.

Don’t ever take your health or ability to move without pain for granted.

Lost some muscle in the past month or so.
Always symmetrical but right hand is typically worse.

Game Changer

Who would have thought we’d be living through a pandemic like this in our lifetime? I surely didn’t.

I am so grateful that I have been off medications since June and managing my disease naturally. Otherwise I would be living in absolute fear.

Last week I had a virtual appointment with my rheumatologist. She’s pleased with my health and disease management. I don’t have to see her for another 5 months or so.

And last week I also watched the documentary called The Game Changers. It’s the story of James Wilks β€” elite Special Forces trainer and The Ultimate Fighter winner β€” as he travels the world on a quest to uncover the optimal diet for human performance.

All I can say is wow. I’ve read countless articles about plant based “diets” and health benefits, not just relative to RA, but heart health, gut health, and much more. But this documentary, well, it’s a game changer.

Now, the biggest concern for me was changing anything in my diet. Having been on strict AIP for nearly 8 months with 6 months virtually pain and inflammation free, upsetting that balance is frightening. And even more so during the current pandemic because now is not the time to have a major flare that can’t be brought down naturally.

I got out my food allergy and sensitivities results and went back over EVERYTHING. My notes from my visits with my naturopath doctor about AIP and eventually adding foods back, eating a rotational diet, blood test results, bookmarked articles online about plant based diets….and I decided to give it a shot.

So, 4 days in and I’ve had some changes. Some concern me a little, and some are really good.

I have some pain in my hands that hasn’t been present until now. But it’s holding steady. It could be simply due to changing from what I’ve been eating for so long without deviating. I’m watching this closely.

But here’s the really cool change. I am able to breathe better. What I mean by that is I’ve noticed that I am able to breathe deeper. Feels like when I use my inhaler, but even better than that. And when I say “better” I’m talking a significant difference.

I was already dairy and egg free so that’s not the difference. I’m reading about a possible link because this cannot be a sudden coincidence.

I can’t wait to see how I do over the next few weeks and especially during workouts.

I’m hopeful that my hands will settle back down and that I’ll be able to eat a variety of foods and be even healthier than I have been.

Rest

22 weeks symptom free before the world went crazy.

I am starting to feel symptomatic. I’m trying not to go down that rabbit hole. Stress is always a factor in my disease and up until a few days ago I thought I had it under control.

I am doing everything I can to try and return my mind, body, and spirit to one of almost no pain and inflammation.

I’ve restarted the anti viral protocol I did earlier this year before going into remission. I will make sure that I am 100% on point with my diet. I admit to eating gummy bears lately as a “cheat.” I know better. And I am taking some supplements to hopefully reduce my symptoms without having to resort to prednisone.

I’m using the BEMER and practicing my meditation more frequently and with greater intention on healing.

And most importantly I am counting my blessings. I am loved. I still am able to work even though the gym is closed. I’m off the meds that would have put me at greater risk during the COVID 19 pandemic. I’ve rekindled a friendship that meant the world to me.

So amidst all the stress there is good. And as much as I am one to push through, I will allow myself extra time in these days to rest.

Don’t ever take your health for granted and love on each other πŸ’œ

Empowerment

13 weeks. 13 weeks today with virtually no pain and inflammation.

Yesterday I was exhausted from very little sleep, and I ate one of the foods on my restricted list (yes it was delicious!). By evening I was feeling a little off. I battled with a massive headache all day. This morning my hands were stiff a few minutes more than they have been lately, and my headache has returned. What does this mean?

Compared to the last 13 weeks, this was a noticeable difference. So, today I’ll drink even more water and limit my food intake to help my body get through this bump in the road.

Relapse is simply not an option. I’m feeling quite a bit of stress and that is a dangerous trigger for a flare. My focus will continue to be inward and I will not allow anything or anyone to affect my disease state.

Selfish? You may think so, but I think it’s self preservation.

I have no more time or energy in my life for toxic food, people, or energies that can potentially cause my disease to rear its ugly head.

Writing these words is empowering.

Renewed focus and strength will be on my physical, mental and spiritual health. No room for darkness, only love, peace, and light πŸ’œ

Believe

It’s been 8 weeks since my pain and inflammation subsided.

8 weeks.

I still wake up each morning with a bit of trepidation as I open my hands wondering if the all too familiar pain has returned.

When I put my feet on the floor will they hold the weight of my body without the agony that used to ensue?

When you live with chronic pain and illness these are the thoughts that invade your mind and steal your peace.

I always try to remain positive. But in my journey I also want to share the realities of having an invisible illness.

I hear things like you don’t look sick. Or aren’t you too young to have arthritis? Why don’t you just take the medicine and make your life easier?

The reality is that taking meds could make my life easier but also put me on the slippery slope of more meds to treat the unwanted side effects. Or having serious side effects like I did on Humira.

The reality is that taking the path of naturally balancing my immune system is hard. Really hard!

It is a full time job. It requires dedication that is often exhausting.

Right now I must eat with precision or pay the price of my body fighting back.

It’s not a matter of choosing not to eat certain foods because I’m on a “diet” – I wish that were the case.

Meal prep each week takes hours of what is sometimes my only day off. I used to enjoy it. I don’t enjoy it much now, but I cannot just eat on the fly like “normal” people do.

But here’s the thing…

I believe that if I continue to do all the things that I am doing now, eventually I will be able to eat more normally.

I believe that my gut will be healed and that my immune system will be balanced.

I believe that my health will be restored for a long time to come.

So in this holiday season I challenge you to take control of your health and your body.

Health is a true gift and we all take it for granted until it’s taken away.

I believe I can do this and I believe in you too πŸ’œ

Mind, body and spirit

Spent most of the afternoon Friday with my naturopath doctor going over all the labs and test results to date, and coming up with a plan.

I believe I’m on the path to healing, long term remission, or whatever you want to call it. She is beyond thorough looking at my health history since childhood, all labs from both my rheumatologist and primary care physician going back several years, running a combination of non-conventional and conventional tests and seeing me as a whole, not just bits and pieces.

The gut health issue is huge and we’re attacking that aggressively with probiotics and even more strict dietary changes to heal my gut, and balance the bacterial overgrowths.

The lab tests have been extensive. Some “normal” tests and others that traditional medicine does not give credence to.

But if you look at everything together it makes sense that the immune response in my body can be put back into balance with a series of treatments to reduce the viral load in my body, get my vitamin and mineral deficiencies taken care of, and in turn get my RA to go into “remission.”

This is a long process and sometimes the pain is so bad that I wish I could just take a pill and make it go away. But in the long run I feel that this is the best choice for me and my body.

In the long run I won’t be caught in the cycle of “finding the right cocktail” of pharmaceuticals creating more issues that require more drugs to treat them.

I’m grateful that I found my naturopath. I will continue to see my rheumatologist and keep her informed of my progress.

My focus will remain on a mind, body, and spirit approach to my health and healing. I’m excited for the journey!

Progress. Knowledge. Power. Hope.

Part of this natural journey to balance my immune system is looking for anything creating an immune or inflammatory response.

I have the results of the food allergy and sensitivities tests back.

I’m amazed at the results. No surprise that cow’s milk and egg whites showed as allergies. This was found back in December. So they will never be reintroduced into my diet.

The sensitivities are a little more complicated. If we are able to heal my gut then the foods that are creating an immuneresponse should be able to be reintroduced in moderation in time.

A rotation diet will be necessary so that I’m never consuming too many at one time.

I already ate “clean” but these results show a large number of foods that I consume regularly that are not good for me right now.

So as of 9/9/19 I’ve eliminated all of these from my diet in hopes that I’ll see a reduction in inflammation.

Here’s the list of things causing an immune response. Some higher response than others, but I’m willing to be very cautious right now and temporarily eliminate them all. Even if pumpkin spice season is gone for me this year.

vanilla

curry powder

coriander

basil

cantaloupe

banana

oat

black tea

artichoke

peanut

cabbage

pumpkin

spinach

cinnamon

clove

peppermint

The good news is there’s a lot of other foods that are not creating an inflammatory response. And, knowledge is a powerful thing.

I have more labs coming back soon and a follow up on September 20th.

Progress. Knowledge. Power. Hope.

Healthy Self, Heal-Thyself

Had another appointment with the naturopath doctor and some test results since then.

I believe we’re onto something and am prepared to do whatever it takes to heal my body.

With that said, I am already feeling the effects of eating foods that are potentially unhealthy and inflammatory to me so that we can get an accurate diagnosis of food allergies and food sensitivities. Telling myself that eating real pizza was worth it!

Up until this week my pain and inflammation was not horrible. This past week I’ve been eating all the foods that I typically avoid so that the bloodwork will give me an accurate picture.

6 days in and the pain and stiffness is escalating. Fatigue is awful. I slept for 10 hours last night and haven’t done much this morning and am exhausted.

Throwing myself into a flare is no fun. But the end will justify the means I guess.

In the meantime my gut health test results are in and surprise, surprise (insert sarcasm here), there is dysbiosis.

Akkermansia muciniphila, is associated with excessive mucous production and multiple sclerosis. Now I know that it’s not a diagnosis, but with the fact that autoimmune diseases tend to cluster, and this is an increased risk factor, we’re addressing it right away.

Streptococcus spp. colonize skin and mucous membranes throughout the body; High levels in the intestine may result from low stomach acid, antacid use, reduced digestive capacity, or SIBO. Elevated levels may also be indicative of intestinal inflammatory activity.
The 2 other bacterial overgrowths, Bacteroidetes & Firmicutes are not associated with any specific disease states but are best not overgrown in relationship to ideal weight management. Their elevation imposes an increased caloric retention, weight gain and difficult weight loss.

That could explain a lot about my inability to lose any more body fat no matter how well I eat and exercise. Along with a chronic stress state in my body. I guess I’m lucky I’m maintaining my weight at least.

Elevated SIgA indicates an increased immune response which can be a response to food sensitivities, allergies, and or GI infections. However, since my gut inflammatory marker, calprotectin, was not elevated the doctor is not too concerned about intense immune reaction leading to identifiable inflammatory mucosal destruction. She believes it is reasonable to first introduce needed gut bacteria to get the overgrown bacteria into check. Then if we find it necessary we can utilize antimicrobials to cut down on the excess. This would be done with herbs, not antibiotics.

So the years of reading study after study about gut health have finally been put to the test! Hopefully bringing it into balance and getting the detailed food testing will help settle my immune system down in the long run.

I’m going to introduce a probiotic called HMF Super Powder from Seroyal.

I will increase daily vegetables and fibrous foods (psyllium) such as squash, lima beans, green peas, sweet potatoes, collards, and artichokes. My doctor knows that I don’t prefer beets, turnips, broccoli, and kale, but finding ways to include these cooked vegetables would be very helpful.
And eat more fermented foods such as sauerkraut, kimchi, and kombucha.

The saliva test indicated higher than normal cortisol level upon waking. And lower than normal during mid morning.

We’re adding in adrenal support through Adrenal Desiccated and Drenamin.

Also based on some other symptoms I’ll be taking a homeopathic phosphorus for just 2 days.

The doctor advised castor oil packs which have an immediate effect on my sore joints.

The food allergy and sensitivities testing, some standard and advanced bloodwork, and a DEXA scan are all forthcoming.

No quick fix here but I believe that in the long term healing is possible.

No quick fix

On July 12th I had my first full visit with the Naturopath doctor. A five hour visit to be exact. It consisted of an extremely thorough look at EVERYTHING in my life from childhood up that could be relevant to the onset of my rheumatoid arthritis and a physical exam.

There are many things that seemed insignificant to me as we talked, but to her were important pieces of my health puzzle that she is carefully putting together.

I left her office both ecstatic that someone was finally listening to me, and exhausted from the length of time and the energy it took to go piece by piece through my heath history.

I have a good start to a natural medicine cabinet with a focus on the chronic UTIs that I’ve suffered from since childhood, and two potent natural antibiotics in case of other illness.

She has me doing hydrotherapy to get the Raynaud’s syndrome to subside. That was easy to do this week in the extreme heat by allowing myself to get really hot and then jumping in the creek to let the cold water shock me lol.

Also I have a few items specifically relative to my RA to help ease symptoms while waiting for tests to be done. I’m continuing with the Tumero and have added a liquid OmegaCo3, and TriFortify Liposomal Glutathione.

The TriFortify is where I know my commitment to heal my body… it is quite possibly the most vile tasting substance on earth and you have to hold it under your tongue for 30 to 60 seconds. Nasty!

I lost a week to vacation but this week will be working on getting the saliva test done, the gut health test done, and the extensive blood tests done.

Being on vacation last week and camping was very much needed. The only downside is that I was not eating as clean as I usually do and I’m hurting pretty bad today.

I’m sure that when I clean up my eating this week my symptoms will improve.

Natural healing is not a quick fix. I will stay the course and do everything I can to give my body every opportunity to do so. Mind, body, and spirit πŸ’œ

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.