I try not to let the circumstances in my life get me down but sometimes it’s just so hard. I thought the issue with my medication had been resolved when I spent hours on the phone weeks ago. But alas…our healthcare is so messed up (and no I’m not looking for a political debate) that even though my doctor sent in the preauthorization that I was told would be all that was needed, my medicine has been denied. She is filing an appeal. We have up to 2 appeals and then the Independent Review Board will be involved. How about this…my doctor says it’s medically necessary so allow me to get my meds!! I’m beyond frustrated that some person in some office is calling the shots on my health! My doctor was told they (Caremark) wants me to try Kevzara injections. They are almost as expensive as the Xeljanz I’m currently taking through the samples my doctor is giving me, and there’s no guarantee that my body will respond to them as well. This isn’t a matter of trading a brand name for a generic. It’s a matter of being forced to change my treatment at the hands of my insurance company. Rest assured I WILL NOT give in. Game on Caremark. You’ll be well acquainted with me soon. I’ve also been sick for a few days and trying to fight off whatever I’ve got going on. No small task with a suppressed immune system lol. The drawback of my meds working so well is that it’s difficult for my body to fight infections. So I’m resting and not working out which makes me feel pretty down. I’m incredibly irritated with all of this. And right on time, as she always does, my earth angel texted me today. I love her to pieces. We don’t text a lot but she seriously comes through every time I’m reaching the end of my rope. I love you Dani! #makeitcount #MIC4D #curearthritis
extreme tiredness, typically resulting from mental or physical exertion or illness.
I think one of my biggest struggles with RA is the fatigue that is sometimes overwhelming.
I’ve been dealing with a flare and the fatigue is really getting to me. I’m not used to being so tired and sleep doesn’t help.
It also doesn’t help that I have a hard time falling asleep and staying asleep (also a gift from RA).
My rheumatologist has told me to balance exercise with rest and reducing my stress levels. The only one of those things that I can control is exercising.
So I continue to workout hard and try to get sleep when I can. The other night I slept for 12 hours and took a nap later that day. I was still tired.
My earth angel was a great encourager today as she sent pics from her gym and was kicking butt and being strong for me while I grit through my workout here. I love her so much 💕
It’s crazy how RA can affect so many things and I’m still learning a lot about the disease.
In the meantime I’m trying to stay healthy and enjoy sleep when I can.
Happy New Year! I waited until after the first of the year to start dealing with the insurance company for my Xeljanz.
Yesterday I spent two hours on the phone trying to get a straight answer about my meds and figure out how we would be able to afford them.
Two hours of frustration, the run around, no answers, some tears and then I got April on the line.
She was a God send. Several conference calls later including one to Pfizer, the drug manufacturer, we came to the best possible answer.
Believe me I have a sheet of paper with names, times and comments to fall back on.
It started with the prescription provider for our plan saying they need preauthorization from my doctor. I get that. My doctor knows it’s medically necessary so no problem there. What the plan rep couldn’t tell me was after the preauthorization was received exactly what my costs would be. She said it would be $3,882.67 for the 30 day supply.
I asked what would happen when I met the $4,000 deductible. She didn’t know. She said to call Cigna the insurance company.
April was very caring and went above and beyond to get answers. She went over everything and said she believed that our individual out of pocket maximum would kick in and help a lot.
She conferenced us back with the prescription plan provider and we walked through it all again. They believed that we would have the 80/20 split after the deductible. Which would be $776.53 for 30 days.
April dug deeper in the plan details. After the $5,000 individual out of pocket maximum is met she said we would not have to pay anything for the meds. They’d be covered 100%.
So we still have to have the $5,000 to pay out of pocket. We talked about the Xeljanz copay assist card I had already gotten. She conferenced us in with a rep from the Xeljanz patient assistance division. They confirmed that the card I have can be used to pay for the initial prescriptions until the out of pocket maximum was met.
So it seems we will be taken care of completely. Thank you April for your persistence and compassion!
Always be persistent. Ask questions. Keep digging!
Don’t take your health for granted. Love on each other.
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.
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 ❤
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 ❤
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
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.
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 ❤
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.
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!