Posted on by Carol

Just keep going.

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.

Posted on by Carol

Back to traditional medicine

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.

Posted on by Carol · 1 Comment

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.

Posted on by Carol

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 💜

Posted on by Carol

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 💜

Posted on by Carol

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.

Posted on by Carol

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.