Why RA needs a cure

I’ve had a couple funny responses when telling people about rheumatoid arthritis (RA).

I think there’s a general lack of knowledge which is to be expected when you lack personal experience.

I had little idea what it was until I was affected. I’ve mentioned it and heard responses like “it sucks getting old doesn’t it?” RA has nothing to do with age.

rheu·ma·toid ar·thri·tis

noun

:

a chronic progressive disease causing inflammation in the joints and resulting in painful deformity and immobility, especially in the fingers, wrists, feet, and ankles

.

As my symptoms have snowballed I’m becoming more painfully aware, pun intended, of just how serious RA is. I had no idea.

Tonight I’m resting through the side effects of the medicine I’ve been prescribed. A medicine that will take months to work, if it works at all. A medicine that is fairly toxic. A medicine that may help but cannot cure.

So for those who don’t know what RA is here is an accurate depiction from rawarrior.

I’ve described my pain as feeling like my bones are being twisted or crushed. RA Warrior uses the analogy of joints being sawed off. Either are accurate.

I’ll be looking for ways to fight for a cure.

I’m appreciative of the information that others share with me from my posts.

Love on each other ❤

#curearthritis

New normal.

I’ve had to do it before. Learn to adjust to my “new normal.” I’m not very good at it. I’m stubborn and want to have control of my surroundings, my body, my health.

When my RA symptoms snowballed they really snowballed. It has caught me off guard. I’ve been in pain for several months straight.

I was so relieved to wake up this past Monday to very little pain. I didn’t want to get too excited. Tuesday morning brought the same. Then Wednesday too. I felt like myself. I wasn’t hurting to the point of tears when I got out of bed each day.

Relief. Maybe it was starting to go into remission.

Then Wednesday evening came. I could feel it begin to flare. Thursday morning. The pain was back and the swelling. Like it had never left.

I am grateful for the few days that I got a reprieve. I was able to workout each day with the intensity I’m used to.

I must learn to appreciate the days where I feel like myself and somehow hold onto that energy for the bad days because this is my new normal.

I started back on the Methotrexate since the pneumonia is gone. It definitely is not a pleasant drug. I feel fatigued, foggy headed and a bit sick for about 48 hours after taking it.

I’m really hoping my doctor will have a better solution on my next visit.

In the meantime I met with my nutritionist about my “diet.” I researched the blood type diet, and although it sounded promising I’ve been loosely following it for about a month with little improvement in my symptoms.

We discussed a ketogenic diet. I’ve been researching its effects on RA caused inflammation and was considering trying it.

We discussed it and she felt it would not be a good choice for me right now. I always appreciate her insight and concern for me and my health.

We discussed a “paleo” diet. And I’m not talking paleo like on Pinterest…hey let’s make paleo muffins.

It’s changing my eating to absolutely no processed foods. So goodbye snicker doodle protein shakes in the morning!

Hello (even) cleaner eating. I’m already gluten free so that part is easy. Now I’m excluding all grains, legumes and dairy. I will be eating fruits, vegetables, seeds, nuts, eggs, meat and seafood.

Hoping for a positive result in my pain and inflammation.

I’m very fortunate to have a husband that I can lean on. I’m not used to being “needy” but lately I have been leaning on him for physical and emotional support.

I’m blessed with family and friends who are here for me.

Cherish your health. You never know when your normal will be changed.

Setbacks.

Working through the emotional toll of being in constant pain is tough. It’s hard to be upbeat when it went from isolated and manageable pains to chronic pain that has brought me to tears.

It was a big deal to give up on natural treatments and start taking the meds. I’ve been advised that the methotrexate (MTX) will take time to work. Hoping and praying that it will and with little side effects.

I finally got the mindset I needed to start drug treatment only to be knocked down again.

I was sick when I started the MTX. I didn’t know that I should have waited. My rheumatologist gave me a Z pack for the sinus infection and said to go ahead and take it. Not ideal I guess but we needed to treat the infection.

I never felt like I was 100% better after finishing the antibiotics. The cough just lingered. I’ve been exhausted all the time but kept going trying to balance rest with the movement that it’s so important for relief from the pain and stiffness.

At the urging of my husband I emailed my rheumatologist yesterday about the cough and she said I needed a chest x-ray. Off to Patient First because I couldn’t get in to my primary doc.

Doc said it’s pneumonia. Stronger antibiotics were prescribed along with a new inhaler.

And now I have to stop the MTX treatment for my RA until the pneumonia clears.

It’s mentally exhausting. I feel like it’s one step forward and two back. But I will not lay down and give up. I’m going to come back stronger.

My heart goes out to everyone that has chronic illness. Stay strong!

Angels

So I’ve given up on trying to supress my immune system with the CBD oil. New symptoms were showing up and the pain was getting worse.

My rheumatologist has put me on methotrexate. It’s a disease modifying anti rheumatic drug. It’s supposed to suppress my immune system so it slows disease progression and hopefully prevents some joint deformity.

Feeling defeated because there are no clinical trials to back up the studies on CBD oil that indicate it could be an immune suppressant.

So I reluctantly took the first dose of methotrexate this morning. I’ve been feeling rather depressed but I’m hoping that when the meds kick in I’ll start to feel better emotionally too.

And once again when I’m at my end and feeling down things happen to stop me and pick me up.

I got a text out of the blue from my angel in Arizona last night. She always makes me feel better about what’s going on.

My sister messaged me this morning with words of encouragement.

And I got a text from another friend out of the blue to see if she could stop by and drop something off.

She’s been reading my posts and did some research into a product that she’s using and she brought me some to look into.

Very timely considering I’ve been advised not to take any pain medicine like Aleeve, aspirin or ibuprofen while I’m taking the methotrexate.

So I’ve got a couple months before I’ll see any potential benefit from the methotrexate and I can’t take anything to ease my joint pain…..sounds like a lose-lose to me!

I spent some time reading about each of the ingredients. There are no contraindications. In fact some of the ingredients have been shown to protect the liver from the toxicity of the methotrexate and others have been shown to help reduce pain and inflammation in rheumatoid arthritis studies done abroad.

Thankful that another angel has come into my life right when I needed it most ❤

Stay the course.

It’s been a rough week. The RA symptoms are relentless. I’m still not taking any medications and trying to treat naturally but I’m becoming frustrated.

Last Monday I woke to agonizing pain in my feet and hips. Hey hips! Welcome to the party! My wrists were also hurting. I couldn’t walk. I couldn’t support myself holding onto to the bed to get across the floor because the pain in my wrists was so bad they were useless to me.

It took me four hours to get out of bed.

Then I guess because my immune system is just whack right now the sniffles that hit the household turned into a full blown illness for me. Fever, wicked sore throat, and cough for days.

I’m exhausted. Sometimes the fatigue is overwhelming.

I got a new bottle of CBD oil Saturday a week ago. This one has a higher concentration of CBD plus other plant compounds. The dosage on the label is 3 drops under the tongue morning and night. 6 drops morning and night if symptoms persist.

I started with the low dose Saturday and upped it on Wednesday. Thursday evening I had significantly less pain in my hands and feet. Friday and Saturday I had almost no pain.

I continued to rest to get rid of the upper respiratory thing I was fighting but was feeling so much better in my joints.

Then Sunday came and so did the pain. Back to a 7 out of 10 and by this morning a 10. I cried putting on my shoes for work. I couldn’t hold the hair dryer. It hurt to get dressed.

I felt like I couldn’t fight any more. I told my husband, Joe, that I was calling the doctor and giving up and asking for meds. I put a call into her office.

Shortly thereafter I got an email from customer service from the company where I purchased the new bottle of oil. It had additional dosage information for chronic pain and severe illness.

I can take 12 drops morning and night.

I don’t believe in coincidence. The email much like other things that have happened came at the moment where my frustration level was high and I felt like giving up and just taking the meds.

For now I’m going to stay the course. I’m going to take the increased dose and continue researching in hopes of getting this into a remission naturally.

Trial and error

I continue to take the CBD oil I purchased but have not been feeling as good as I did that first week. Although there are many studies that indicate it is a potentially good treatment there are no dosage guidelines.

So I’ve been researching more. I found an oil that has 1500 mg of phyto-cannabinoids and is approximately 99.2% CBD. The main difference with this new oil is that it also contains terpenes and fatty acids from the plant.

Research indicates that having a full spectrum of these components can yield better results. I also will need to ingest much less of it because it’s concentrated.

Last week I’d caved in and started taking the prescription NSAID, Meloxicam, to try and take the edge off my pain. My joints hurt less however, the side effect was a 10 pound fluid retention in just 5 days! I had pitting edema and was very uncomfortable.

I called my rheumatologist and she said that Meloxicam can do that to some people. Great….less pain but holding fluid. So I stopped taking it. Three days later I’m just about back to normal with regard to fluid but also back to normal with my pain.

I continue to find relief when I get in the gym and lift. Thankful for that.

So, a lot of trial and error as I try to find a solution that will work for me. I’m still determined.

Do you believe in angels?

I have never believed in coincidence. When I was diagnosed with rheumatoid arthritis and began researching to get as much information as I could I stumbled upon an article about an amazing women with RA. She has competed in body building competitions, has her own construction business, and is a motivation to others with the disease. She has a heart of love and compassion and a drive to help and support others with the disease.

I followed her on Instagram and a comment I made on a picture turned into a series of messages and then a phone call to talk to each other about our stories.

Dani is a source of inspiration to me in the gym as I don’t want to give up my passion for lifting and have a dream of competing one day.

I can text her any time with questions and she’s always willing to listen and give me her input.

Yesterday I was awakened in the middle of the night with terrible pain in my wrists. I couldn’t go back to sleep. I was fighting back tears.

My mind raced all morning thinking of what I could have done to cause this – why are they hurting now when my pain has been so much less? Is it because of something I did the other night while lifting? Am I going to have to give up lifting and sacrifice what I love doing?

And then I got a text. Out of the blue from Dani.

“Hey girl…. I wanted to share with you the type of training gloves I use. They are called Bionic. They have joint supports on the interior fingers. They make a huge difference for me. They are full finger which most girls don’t like, but for RA patients, they are best for our hands.”

Coincidence? I don’t think so.

As I’m dealing with my “new normal” God has put some amazing people in my life.

I believe that I’ve been prepared to walk this road by changing my eating habits years ago and developing a discipline that will be put to good use in the near future. I believe that my quest to lower my cholesterol naturally by eating differently and lifting weights and being fit has primed me for this new challenge.

And I believe that when I’m questioning what I’m doing and fear and doubt set in that my angel comes through…with a simple text about gloves. In the exact moment I needed it most.

Lost remedy

Today I had the second appointment with my rheumatologist.

I told her about the CBD oil and sudden change in my symptoms in the past few days.

I waited for the awkward silence or anticipated condescending lecture, but what I got was a pleasant surprise.

She was aware of the studies that I told her about. And she said that we are seriously lagging behind in our research into alternative treatments in the US.

I also mentioned the blood type diet that I’m looking into and my preliminary findings there (I’ll post in detail about that soon).

She was very understanding and said she’s ok with following me for three months while I use the CBD oil and journal my results.

She wants me to continue taking just the CBD oil for 6 weeks without drastically changing my diet so we will have a better idea of whether it’s working or not.

She does want me to get some more blood work done to get a baseline of numbers to monitor the disease and x-rays of my feet and knees to do the same.

And there’s the understanding that if I have a flare that is bad that I can call her and we can discuss some treatment.

I was very pleased with her willingness to follow, and monitor me while allowing me to explore my body’s ability to respond to natural treatments.

So I’m going to continue taking the CBD oil and in 6 weeks alter my diet more. I’m hopeful.

Came home this evening to my topical CBD salve that just arrived – www.lostremedy.com. Here’s to another option for treating the pain and inflammation!

Hopeful.

After two horrendous days I’m feeling hopeful. The past two days have really tested my limits. I was beginning to question whether I would be able and willing to continue trying alternative treatments or just throw in the towel and tell the doc this week to put me on meds.

This morning was another day of excruciating knee pain. I could barely walk this morning when I woke up and fell (fortunately caught myself before going down completely) as I was making my way downstairs to see the kids off for the first day of school.

That had me shook up. I sat in the living room and waited for the kids to leave for school. I was in pain. I didn’t even take their pictures as I have done every year on the first day. That upset me when I realized too late.

I sat in my chair praying that the pain would relent some. Finally an hour or so later I got up again. Gritting my teeth through the pain I started moving around the house a bit. I had lots of things to do today and needed to get going. I drank my coffee and took the CBD oil.

I had a hard time getting into the Jeep to leave.

As I was out running all my errands for home and work I noticed something. My knees still hurt. But my knuckles that have been hurting nonstop for weeks on end weren’t hurting. The one in particular that I took a picture of this weekend…wasn’t hurting. I could close it completely to make a fist. It didn’t hurt.

Tomorrow marks one week of taking the CBD oil. Maybe it’s starting to work.

I went to the gym and got a decent chest workout in. As is typical when I’m lifting my pain stopped while working out.

Hours later, my knuckles are still pain free and my knees barely hurt.

Maybe it’s starting to work. I’m hopeful.

More to learn.

After being able to power through and hit the gym yesterday and feel pretty good…today has me almost beat.

I was awakened in the middle of the night when my knees decided to join the party. Pain. It’s a funny thing really.

Today walking is very difficult. The pain in my knees is relentless.

I’m really praying that the CBD oil will start to help. I increased the dose to 500 mg a day yesterday from 200 mg.

I also noticed my one knuckle has some kind of small lump on it. That entire knuckle is very painful. And today I noticed just how swollen it is compared to the left finger that is not affected.

I texted my new friend and RA warrior in Arizona and asked her about the lump.

She said they’re RA nodules and they can come and go.

More research….

About 25% of RS sufferers get them. Ha! Well count me in then.

My friend asked if I’d bought CBD topical cream for my joints yet. I hadn’t but I did after speaking with her. Hoping it arrives soon.

So much more to learn.

What I’ve learned so far is that RA is fickle. The pain can come and go….at least so far. Here’s to tomorrow. It has to be a better day.