The red thread

I’m always amazed at how life works out. I’ve written about my earth angel before. She continues to amaze me. Yesterday I got a text asking if I would be on the board of her new nonprofit. She’s been working on getting her nonprofit status and it finally happened!

I wasn’t sure if it would work with me being in Maryland and her being in Arizona, but it is going to be ok.

I’m super excited about it! Make It Count for Dani is going to grow and we’re going to do amazing things!

Personally I am still feeling good! The Xeljanz is still working well! I’m able to workout hard and am getting my strength back. My rheumatologist is giving me samples until the insurance company decides to cover it. Still waiting on them.

In the meantime I will continue to live my life and RA will have to find its place in it…not the other way around.

Life is a gift. Health is a gift. My earth angel is a gift. There’s a saying that there is a red thread that connects those destined to meet. I believe that more today than ever.

Love on each other and don’t take your health or loved ones for granted.

#makeitcount #curearthritis

The cost of relief

I’ve been on new medicine for just about two weeks and I feel amazing! My doc said if it was going to work I would know within a week or two.

I am feeling like myself again physically and mentally and I hope I continue to have success. I’m still aggravated that I couldn’t find a natural approach but waking up and being able to walk with little pain is like a breath of fresh air.

I asked my doc to call in the prescription so I can start dealing with the issues of getting the insurance company to pay for it. Without any insurance the medicine would cost $5000 for a 30 day supply!

I’m fortunate to be working with a good pharmacy who is helping me through the process. I’ve also gotten a copay assist card from Pfizer to offset $12,000 per year toward the out of pocket costs.

I’m sure we’ll figure it out and I’m trying not to stress over it because stress can cause a flare in the disease.

I’ll be working on a fundraising campaign for CureArthritis.org soon so you might want to unfollow me now.

I’m so happy that I’ve been able to get back to working out in the gym the way I used to. My strength is coming back and I’m feeling good.

Don’t take your health for granted and love each other ❤

#curearthritis

Change

Saw my rheumatologist today. She’s taking me off the methotrexate. It’s been 7 weeks with zero improvement but that’s not why I won’t be taking it anymore. It’s because of my side effects. They would only get worse as we increased the dose.

I’m relieved. I dreaded taking it knowing that I’d feel sick and really fatigued for two days afterward.

She discussed some of the options and decided to give me a 30 day trial of Xeljanz. She said that unlike methotrexate which takes months to work, Xeljanz will show results in one to two weeks if it’s going to work for me.

Xeljanz is an anti-JAK, or Janus kinase inhibitor, which targets a specific cellular process that is involved in the immune response and resulting inflammation in RA.

I’m praying it works. The only concern is that she said it is very expensive. I’ll have to cross that bridge when I come to it.

I know the pharmaceutical company provides assistance with cost so hopefully that will be an option if I stay on it long term.

We talked about my symptoms and she believes that I also have Sjogren’s syndrome too. That is just another thing to add to the list!

I started a new 12 week program at the gym. I have managed pretty well despite the pain this week. I’ve modified the exercises a bit if I was hurting to bad to do what it called for.

I like the program because I function much better emotionally if I have something to focus on.

Don’t take your health for granted. Keep moving while you can. And love on each other ❤

#curearthritis

Strength

Sometimes you feel weak. It’s a feeling that I don’t want to dwell on.

Taking meds for my disease has provided me days of feeling weak. I take the meds, feel sick for about two days, can’t eat, and I’m weak.

When I finally got myself up and got downstairs this morning I was exhausted. Compared to months ago before the disease snowballed when I was hiking miles with my family. I sat down and rested.

As morning turned to noon I decided that I needed to get up and try to go to the gym.

When I finally got there I wasn’t sure if I could even lift. I grabbed a template online and decided it was leg day. My wrists were hurting so bad today I was afraid to do upper body work.

I grit through the stretching and as my workout continued and my joints warmed up I managed to get some relief.

It wasn’t my best leg day. There were no personal bests today. But I showed up. And I did what I could do.

I came home and saw this Facebook memory. It hit home today. I’m not weak.

Love each other ❤

#curearthritis #rasucks #rheumatoidarthritis #cantkeepmedown

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.