Orencia injections…the day after includes lots of puppy snuggles. Last night was injection #8 so two months and waiting to see if it’s going to really start working. Four more shots/weeks to go before the rheumatologist and I make the decision to stay on it or move onto the next medication. 🤔
Last night I must have hit a capillary because I had a fair amount of bleeding after the shot. That was surprising lol I’ve never done that before when injecting 💉😅
Ran my errands this morning. Headache woke me up as usual so then I just get going because I know by afternoon I will hit the wall and need to lay down. No appetite either. Weird.
Still working on timing the shot so the entire weekend isn’t a bust.
I’m slowly coming to accept that my life is never going to be what it used to be. My disease is teaching me to accept days like today as part of the process of finding something that works. I’ve never been good at being still. But I’m learning to rest so I’ll begin to feel better.
Hoping I’m on the right course and that these meds will work!
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.
It’s been several months since I have written. Life has been really crazy as it has for most. I was hoping that by now my naturopath doctor and I would have had me back on track and in remission.
Sadly things have only gotten worse. Between the stresses of the pandemic, its effects on the gym/my job, and personal stress, I’ve been fighting an uphill battle.
There’s a few things that have entered the equation that I feel are of great importance and my naturopath agrees. She’s been taking an intensive course on autoimmune diseases and we’re working through some steps to get more answers.
I began feeling symptoms of menopause (fun stuff) and a hormone test confirmed I’m definitely going through it now. I had been researching menopause and rheumatoid arthritis and it can have a profound effect causing disease activity to accelerate and become more aggressive.
We’re not talking hormone replacement therapy just yet. I also just had a bunch of lab work done to verify if there is gut permeability and to check for 29 pathogens that can cause inflammatory responses. Waiting on those results.
In the meantime we’re going back at the diet. I had switched to a plant based diet in the spring. Since I don’t eat any dairy or eggs, plant based or being vegan wasn’t too much of a stretch. And it’s widely recommended for helping keep inflammation down in people with RA. But just like anything else it also depends on the individual.
I do believe that the immense stress I’ve been under is a major factor but at this point foods could be making it worse.
I’m in so much pain constantly and can’t even workout like used to. It’s effecting me mentally and physically and I’m completely drained more often than not.
So because of the severity and length of this flare we’re doing something rather drastic. I had been researching this before my doctor mentioned it. It’s called an Elemental Diet.
It’s physician formulated and some small studies indicate that it could help get me out of this flare.
For 14 days I will drink a powder mixed with water throughout the day. No food, and only water, and I believe tea, to drink. No sweeteners or anything like that. It’s fairly high calorie. The proteins are broken down into amino acids, and the fats and carbohydrates are in a pre-digested form. The idea is to afford me digestive rest and help heal gut permeability.
After 14 days I’ll reintroduce foods very slowly and see how I do.
Working with my naturopath doctor helps me feel not so helpless. I’m hopeful.
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.