I tell myself this at least three times a day. It’s been a little while since I decided to go back on medication. Stayed on Xeljanz for 7 weeks with zero improvement.
The only relief I get is taking Celebrex daily. I hate that because I know what NSAIDS do to gut health. But without it I’m not able to function.
My rheumatologist took me off the Xeljanz and we are going on to Orencia injections. Insurance approved it and I got patient assistance to be able to afford it. I certainly don’t have $4,000/ month extra lying around. I can handle $5 though.
I just started going back to the gym and pushing through workouts. Modifying lots, excluding lots, but still going.
I’ve been in such a dark place mentally because of the pain and inability to workout the way I used to. Going and accepting my limitations has been difficult for me. But I’m going.
So the new meds will arrive next week and I plan on doing the injection on Friday in case I have any reactions I’ll have the weekend to deal with it.
I’m hoping it will work and I’ll get my quality of life back. In the meantime I’ll remind myself to just keep going.
Since my last post my disease has steadily gotten worse.
I’ve tried countless supplements. A Physicians Elemental Diet for 14 days to reset my entire digestive system. Going back on the AIP diet. All to no avail.
This is by far, the worst my disease has been. I called my rheumatologist and discussed going back on meds. I requested trying Xeljanz again. It’s been a long time since I’ve been on meds and a couple years since trying Xeljanz. My hope is that my body will respond.
Starting immune suppressing drugs during a pandemic is not what I want to do, but I know my body, and know it’s time to try and stop the disease progression and damage it’s causing.
The benefit of Xeljanz is that it’s a daily pill so if I do get sick with COVID, or anything else for that matter, I can stop it temporarily and let my immune system fight whatever it needs to.
And speaking of COVID, I just had the antibodies test done to see if I had it and was asymptomatic. Having been in a house with people that were sick, I would have thought I was going to get it. I’m curious if I had it and that’s why my RA symptoms have gotten so much worse. Any virus, bacterial infection, or pathogens can aggravate symptoms by causing an immune response. More on that to come when my labs come back.
In the meantime I’m waiting to figure out the cost of the meds and what kind of assistance I’ll get to pay for them. I started a new job on December 21st which has been a God send allowing me to work from home.
I joined a nice gym where I can go and try to keep up my workouts and have some equipment at home for days I just can’t go and do a big workout.
I continue mindfulness and meditation to try and keep a positive mindset. Some days are hard though. On those days I’m working on allowing myself to cry and accept that I can have bad days and that’s ok too.
Don’t take your health for granted and love on each other.
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 — elite Special Forces trainer and The Ultimate Fighter winner — 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.
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 💜
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 💜
It’s been 4 weeks since my pain and inflammation subsided.
I believe that the combination of supplements, the AIP diet (modified even more to leave out all the foods I’m sensitive to), the antiviral protocol to put the EBV back into dormancy, and the specific probiotics are beginning to work.
I saw my naturopath doctor again today. I’ll be going for another round of blood work soon to see how I’m progressing. I’ll also be getting some x-rays done to compare to the ones I had when first diagnosed.
The goal from the beginning has been to manage my disease without medication. I believe we’re on the right track.
Since my diagnosis I’ve read a ton of information about gut health, food allergies, viruses, bacteria, and genetics all being possible links to the disease.
My naturopath has helped put together the pieces of the puzzle and is going to help me have a plan in place should my disease flare up.
I’m so grateful that for now, for this day, I’m still virtually pain free and that my immune system appears to be balanced.
This past week I had a very vivid dream. I dreamt that I woke up and when I opened my hands I wasn’t greeted with the familiar pain and stiffness that makes me wince. I got up and walked across the bedroom without feeling like I was walking on broken glass. I remember thinking that I was “better,” that healing or at least remission had finally happened!
Then my alarm went off. And I winced as I opened my hands. Quiet tears streamed down my cheeks.
I struggled with the vivid images that morning while getting ready for work.
Later that morning the thought occurred that maybe the meaning behind the dream was that healing was coming. The message was to stay the course. To stay strong.
I do know that food is a major factor in my disease. Since inducing a flare by eating trigger foods in order to do the food testing, I’ve not been able to settle my body back down.
I went back on the Autoimmune Protocol Diet (AIP) this past week. It’s super strict but I know that it’s necessary. Five days into it and inflammation began to subside.
Six days in and my hands and feet aren’t weren’t as stiff or hurting as much.
Seven days in, and I have almost no stiffness in my hands or pain in my feet.
This morning as I write I’m grateful for a reprieve. Despite the cold and the rain, I am feeling good!
I saw the naturopath doctor Friday and the visit was a good one. Three hours going over my symptoms and current treatment plan.
She tweaked the supplements that I’m on. Reducing some. Adding others.
She’s ordered some x-rays, and will be repeating what my rheumatologist had ordered over two years ago when I was diagnosed. She wants to see how much damage has been done to my joints to gauge the disease progression.
I’m still completely impressed with her thorough approach to my health.
And this morning I’m encouraged that it wasn’t just a dream. Rather a vision of what’s coming. And where I’ll eventually be…for good.
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!
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.
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.