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the Rite of Aging…early

~ Navigating Rheumatoid Arthritis through Beauty and Nail Art

the Rite of Aging…early

Tag Archives: rheumatoid arthritis

A2Z Series: I is for Inspired

08 Thursday Jan 2015

Posted by MonicawithRA in Community, Nail Art, Rheumatoid Arthritis

≈ 8 Comments

Tags

A to Z series, Chanel, flare, Nail Art, Pahlish, Pueen, rheumatoid arthritis, stamping

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I am in the worst mood ever today. Our furnace and humidifier broke so the main and basement levels are frigidly cold and dry. This means cold joints which in turn equals angry joints. In just one day I am in massive amounts of pain and nearly immobile without great effort. It feels worse with my skin tight and dry stretched over top.

This morning my car battery died and I had to purchase a new one. On top of everything else, the light I use for blog photos is acting up so my photo quality sucks. Not to mention, my swollen fingers are more than a little noticeable in said photos.

I considered not posting these pictures or even taking part in the challenges for the next couple of days since I feel so rotten but because of the flare I cannot climb and I am just really annoyed and down and nail art always makes me feel better…

 

I was inspired today by one of The Nailasaurus’ designs. I actually put it in my December favorites post, linked (here).  It was a coincidence I used purple polishes as I really wanted to use the Chanel polish since it makes me happy. Sammy’s manicure reminded me simple is sometimes better. This is perfect for me as I tend to add and add and add until the design becomes too busy.

Even though the photo quality is pretty bad and you can’t really see the colors properly I hope you like the design for today’s A-Z prompt. The picture is a little smaller as it is a little more forgiving. Please hang in there with me for a couple of days until I can get everything sorted (including my mood!)

 

A2Z Series: I is for Inspired | The Rite of AgingI started with one coat of Chanel Taboo and three coats of Pahlish Mind Like a Diamond as my base.

I stamped with the same Chanel polish and Pueen Cosmetics plate PUEEN35  from the Love Elements collection.

 

Hi, my name is Monica and I have RA.

 

 Don’t forget to check out the other manicures below.

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September Infusion

08 Wednesday Oct 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ 7 Comments

Tags

autoimmune, flare, Orencia, orencia infusion, rheumatoid arthritis, side effects

Be ready to laugh! I sat for my last IV infusion in September! If you’ve been following my blog you know why this is hilarious. With the reimbursement nightmare spanning nine months I stopped the infusion until I got my money back. Last week’s blog post was about the extreme fatigue I experienced while off the medication so my doctor was thrilled when I re-started the infusion.

Maybe…

First, I didn’t feel any better. I expected to. But, I didn’t. The first time I sat for the infusion I felt so good the next day, I went on a four hour hike. Honestly, I expected miracles. They never came. Okay, I shouldn’t be so harsh, I did feel less tired but that was it.

The worst bit was the return of two infections. One was a sinus infection I’ve battled since who knows when. I had corrective sinus surgeries, in college, because of infections and debilitating headaches. In high school, they got so bad I took too many sick days (the longest was a week). Apprently, there was no point in getting those invasive surgeries because I still battle these infections (remember when I ended up in hospital because of them?) I was fine until I started the Orencia, which unfortunately suppresses the part of the immune response that also fights sinus infections. Just my luck!

I am also dealing with a recurrent yeast infection. I started getting them in April. At the time I actually  didn’t know they were infections and thought the symptoms were side-effects of prolonged Ambien use (the only medication change in a few months). Turns out yeast infections are side effects of prednisone use and because I have to increase every so often I am more prone to them.

 

I was really bummed because during the two months I was off the Orencia I did not have any sinus headaches! I slept with all my pets through the night without any problems and I rid myself of yeast symptoms, as well! Hooray!

Until the infusion…

Like clockwork, both infections came back full force. My headaches rivaled those I had back in high school and the yeast infection? Well, those are just annoying.

Thankfully, I had my monthly rheumatologist’s appointment the following week so I sat down with my doctor and we discussed my options. I needed to stay on biologic and, unfortunately, Orencia did the best job of suppressing my RA symptoms. He agreed the side effects were too much so we compromised and decided to make the switch back to subcutaneous injections. They are weekly, self-injections so the dose is lower. Hopefully, I will maintain my condition and the other symptoms.

I never felt as great on the sub-q injections as I did on the IV infusion but honestly, I am willing to feel a little bit more ill so I can feel a little less sick.

 

Seriously, this situation is funny given how much hassle I went through just to stop the medication. Again. How many times have I switched medication in the last three years? I’ve lost track.

However, sub-q injections have their perks. I no longer have to schedule off from work, I do not have to have to drive to my doctor’s office and sit with an IV in my arm, I do not have to sleep all day.

 

I’ll take it.

 

Hi, my names Monica and I have RA. H

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The End of a Saga – Reimbursement of Out-of-Pocket Expenses

18 Thursday Sep 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ 2 Comments

Tags

Accredo, copayment assistance, Orencia, orencia infusion, rheumatoid arthritis, specialty pharmacy

“Persistance pays off. Sometimes it’s even okay to be annoying because you will get what you want” – my dad

 

After 9 months…I will get my money back! If you are new to my blog, I will give a little review (you can read my experience in more detail here). I started sitting for the monthly Orencia IV infusion in September 2013. Since I already paid the deductible on my insurance, all my medications were covered. At the end of March 2014, I received a surprise 2-month delinquent bill for an invoice from January. It totalled more than 800 dollars and attached with a lovely note telling me they would stop my medication shipments. There are so many more issues with this but the one that really bugged me was my credit score. They were sending me the invoices, albeit to an address I have not lived at for TWO years, but because they thought I was ignoring them my credit score plummeted. I had fabulous credit before this. And, as you probably know, it takes patience and time to build good credit but only one missed payment to shatter it.

 

ANYWAYS…

I re-applied for co-payment assistance immediately. I contacted Accredo, gave them the new membership ID and asked them to backdate the invoices.

After more months of clerical mistakes, I still paid out of pocket so in July I started over.

I re-re-applied with Orencia IV Infusion co-payment assistance online, got a new membership card and after weeks, yes, weeks, found a manager at Accredo. There was a note on my account “if client calls again, tell them to call insurance provider”. I was so angry, I yelled at the supervisor. “This is not their issue, it’s Accredo’s for not applying the right information and sending the invoices to the WRONG co-payment assistance!” The manager “sat” with someone in the Billing department as they re-entered my new membership information and promised to re-send the invoices “to the right place”. Up until this point, they were sending them to Remicade co-payment assistance. (I HAVE NEVER BEEN ON REMICADE, if that gives you a sense of how INCOMPETENT this pharmacy is)

PS. I still do not know where they are sending those invoices but it is certainly not to Orencia.

 

I called Orencia to find out if they had received the invoices and they said no. However, Accredo had filed my benefits through the card on file and the May invoice was rejected. Why?

 

Because Orencia has a 45-day back-date policy.

 

I almost started crying on the phone to the Orencia rep. I was devastated and very annoyed. I wanted to file a complaint with the Maryland Insurance Administration. I was obviously not getting anywhere on my own and I needed legal help.

 

But something came to me, I asked her “I signed up for the new Assistance program in March through my doctor’s office. Where is that information?”

“It’s not showing that you were a member before July.”

“I was, I never received a card but I did recieve a membership number. Where is that information?”

Now, it’s important to know I talked with this specific representative at least three times since this ordeal began. She remembered talking to me in April “Wait a minute, let me go through your account…I would not have even talked to you in April if you were not a member”.

She went through my history with a fine-tooth comb and noticed a mistake in the notes. I had signed up with the IV copayment assistance program in March, with validation from my doctor’s office. For whatever reason, that membership information had not transferred to my account.

The representative contacted management and placed a request for exemption. It turned out it was a mistake on Orencia’s end so they accepted the exemption and agreed to reimburse me every single invoice from the beginning of the year, even though the January one was a little out of the 45-day bracket.

 

I kept repeating “thank you so much, if you hadn’t remembered talking to me before the May invoice, if you had not gone through my history the way you did, I would not be getting my money back.”

It’s amazing how just a little customer service goes a long way.

 

…But, there was a snag. (of course, right? It just cannot be that easy…)

Accredo did not send them any of the invoices, they could not do anything without those invoices.

I fished around through my bills from the last year and found every one of them.

…But, there was an even bigger snag.

 

They were not in my name. I am still under my father’s insurance so the invoices were sent in his. Also, the medication name was not even on them! They just showed the coverage adjustments.

The representative told me to fax them anyways. If they could not use them they would let me know.

Just in case, I called Express Scripts and asked them to re-send an itemized invoice in MY name.

 

I called a couple of times last week because Orencia was still processing the invoices and they had neither been rejected or accepted yet.

On Monday, I ended up speaking with this amazing representative again and she told me the checks had been sent out. I asked her the value of each check and I was so pleased to find out I am getting everything back. Well, everything minus $20, which is what I was only supposed to spend over the last 9 months. How much did I spend? Over $1,000.

 

I am not going to lie to you guys. I am exhausted. I was on the phone with Orencia, Accredo every week sometimes twice a week. The strain and stress of the situation put me right to sleep and I napped most of the day. I was close to my breaking point and I was ready to file a complaint.

But now, this is behind me. I re-start the Orencia IV again next week. These past two months have been pretty bad without it (which I will talk about in another post).

 

Persistance, my friends, does pay off. I’ve always been one to beat anything into the ground. My father usually says I am less persistent, more pig-headed than anything else…hey, if it works, right?

 

Hi, my name is Monica and I have RA.

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The Good Pain

13 Wednesday Aug 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ Leave a comment

Tags

depression, good pain, muscle pain, pain, rheumatoid arthritis, rock-climbing

It exists! Good pain!

 

Two weeks ago, I climbed for 5 days straight, two to three hours each session. First of all, I know right? That sounds a) completely unbelievable and b) totally regrettable. But, guess what? I felt amazing. I hurt but it was all muscle pain and no, it was not “I strained a muscle and now I cannot move”, it was “I had a great workout and now my muscles are repairing and strengthening themselves”!

I texted a good friend of mine on staff to tell him I was in pain and at first he thought it was a flare. I gushed over how great this good pain felt.

I forgot what a good workout felt like. I felt mobile, happy, charged, and overall “normal”.

 

…I dislike using the word “normal”. My normal no longer exists. My RA-ridden body is the new norm yet I still remember what “normal” feels like.

This is probably holding me back, mentally. I do not mean, life-wise, getting a job, moving around, living…I mean, I cannot move forward with this disease. I keep hoping it will go into remission, I will go back to the way I was.

 

All of that aside, I was thrilled. I remember way back in high school my muscles ached when I climbed too hard and I felt painful and uncomfortable. I remember my annoyance when I pushed my body too far when I shouldn’t have. I knew my limits and ignored them.

Now, I love this pain. The muscle pain reminds me I am still able-bodied, I am still capable, I am not just the RA. I still have limits and push myself past them.

 

How strange, right? My perception of pain completely changed. Regardless, I still have to pick and choose my battles like whether I should climb or cook the dog food, I still cannot do both in a day.

 

Hi, my name is Monica and I have RA.

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Stopping the Orencia

07 Thursday Aug 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ 3 Comments

Tags

Accredo, bad customer service, copayment assistance, orencia infusion, rheumatoid arthritis, specialty pharmacy

I decided to stop the Orencia this month. I can no longer afford Accredo’s STUPIDITY.

Now, do not get me wrong, if the medication worked wonders and I felt able-bodied and “normal” I would gladly pay for it. However, I cannot justify  ~ USD $450/month for a medication that only works maybe 60%.

Yes, I am a part of the Orencia IV Infusion Co-Payment Assistance Plan. Yes, Accredo confirms my out of pocket expense is $5 so why do I receive a surprise $900 bill every two months?

I paid out of pocket long enough (since January)!

Why are the back-dated invoices not accepted by Orencia? Because Accredo send the invoices to Remicade (a Centicor company)….last time I checked, I was not on or never have been on Remicade.

 

I started over again. From scratch. I requested a new member ID from Orencia. I received the card attached to that membership. Accredo updated the information…properly! They sent the invoices to the right place…finally! A supervisor confirmed the changes.

I should receive a refund on my out-of-pocket costs.

 

….Maybe…Until I do, I stop the Orencia.

 

Regardless of the trouble with Accredo I struggle with stopping this medication. Orencia works best out of all the medications I’ve taken. But every latent infection comes back like clockwork: my on-going sinus infections, yeast infections, stomach pain and nausea.

 

Well, let’s hope in the next couple of months I will be re-united with my long lost money!

 

Hi, my name is Monica and I have RA.

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A Bad Place

09 Wednesday Jul 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ 2 Comments

Tags

depression, mobility, rheumatoid arthritis

I have not stuck with my RA-post blogging. I am working on two posts right now. Every time I sit down to draft them, I lose steam.

I am in such a bad place right now.

I feel awful. I am in pain. It takes 5 or 6 times more energy just to do everything. I feel immobile more often than not.

Climbing is difficult. I am stiff before and after. I am in pain afterwards. I just can’t climb. Physically, I cannot complete climbs, I have trouble with the moves. Everyone rocks at the sport and does not have to deal with the same physical barriers as I do. I cannot keep up with my usual climbing partners and I can tell they do not want to climb with me. So, once again, I am on the lookout for a new climbing partner.

The Orencia IV infusion did not work this month. I had vacation for three weeks and I wanted to travel. I feel so under the weather I never made it farther than my climbing gym!

All this has makes me very depressed. I am immobile, barely capable, and the only thing that made me very happy is near impossible right now.

As always, RA gets in the way of life.

 

Hi, my name is Monica and I have RA.

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Rheumatoid Arthritis Awareness Week #LookDeeper #RAAW14

17 Tuesday Jun 2014

Posted by MonicawithRA in Rheumatoid Arthritis

≈ 2 Comments

Tags

depression, fatigue, rheumatoid arthritis

Chronic fatigue is one of the most unfortunate parts of Rheumatoid Disease. It is not only a symptom of the disease but a side-effect of the medications.

Fran Cherry's avatar30somethingwitharthritis

I was one of 1,954 people with Rheumatoid Arthritis who completed National Rheumatoid Arthritis Society’s survey on the impact of chronic fatigue for those living with RA. Although I mainly use the term ‘Rheumatoid Disease’ now rather than ‘Rheumatoid Arthritis’, in this context I’ll use RA. It’s no surprise that 83% of survey respondents ‘felt that the public is not at all aware of the impact that chronic fatigue has on people’s lives’. I think the general public get confused between RA and Osteoarthritis (OA) and find it hard to understand the full implications of living with an invisible illness. I think this is partly due to how the media covers rheumatoid arthritis and because fewer people have RA than OA. (According to Arthritis Research UK, 8.75 million people (in the UK) have sought treatment for osteoarthritis). In contrast, according to NRAS, around 690,000 people in the UK have RA…

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