Tag Archives: rheumatoid arthritis

Even Regular Pharmacies Have their Downsides

11 Wednesday Jun 2014

Posted by in Rheumatoid Arthritis

≈ 2 Comments

Tags

, , ,

I am beyond annoyed. Maybe my pharmacy has been this way for years. Maybe I just noticed how INCOMPETENT they are since I started frequenting them twice a week. Wow!

I have had trouble with their customer service for months now.

Well, it is not like they are not nice or cordial. They are just dumb as rocks.

You would think they would have more people on register during peak hours (after work, before dinner time, lunch time, morning rush) but no, they only have two. People do not have one hour to wait in line for medications. I have walked away multiple times.

Now, waiting in line is not the biggest deal in the world.

 

This is my TRUE issue.

Not getting my medications.

 

A couple of months ago I re-newed my prescription for Ambien. I called it in, I was told it would be ready by 9:00 pm, I stopped by after work.

“Oh, I’m sorry, we called to let you know we did not have it in stock and would not have it in stock until tomorrow afternoon.”

I had received a call – from an unknown number, who did not leave a voice message. Was that what they referred to?

I was in the throws of insomnia, I needed my medication. I asked them to call it in to another pharmacy.

“Well, all the pharmacies are closed right now, you would need to call it in tomorrow yourself.” 

Excuse me? You did not let me know you did not have this medication, you are not the only 24-hour pharmacy. It is your responsibility to call it in somewhere else if you cannot fill it at your facility.

“Okay, we will call it in tomorrow.”

Guess who did not? 

 

Fast forward two months later — I call in my methotrexate prescription. I need this injection once a week to function, to walk, to move.

I receive a call the following day (the day I take the injection) informing me the medication was backordered and they did not know when it would be available.

The proper good customer service thing to do is call it into a different pharmacy. However, apparently it makes sense to sit back and twiddle their thumbs until the medication becomes available.

Maybe I am crazy for needing my medications. Maybe these people do not realize medications are actually important and people are not just on them for sh*ts and giggles.

I called them.  “Are you going to call it into a different pharmacy?”

“Well, we usually do not carry this medication so we are not sure when we will have it. You can call it into a different pharmacy but they probably won’t have it either.”

FYI: I have been on this medication for 3 YEARS and never had trouble before.

“I will call it into a different CVS then”

“Well, you probably won’t get it, but I will take it out of our queue”

Guess what? I had NO trouble getting it from another pharmacy. 

And, when I went to this other pharmacy, I did not wait in line, they answered my questions, they were quick, friendly AND cordial. AMAZING.

And then, yesterday, I picked up two more prescriptions at a generally non-busy time, and I waited in line for 45 minutes. I overheard people in line talking about how difficult it was to fill their prescriptions, how long they made them wait to get them filled.

At this pharmacy, they guarantee prescriptions in 30 minutes if you wait for them in-store. Most of these people waited over an hour.

Now, there is a discrepancy between the staff here. Sometimes, when people sit and wait for their medications they get to cut the line and get them as the staff prepares the prescriptions. Okay, that sort of makes sense but it is really annoying when people are waiting in line for AN HOUR.

What really gets me is when I am there waiting for my prescriptions, they make me and everyone else waiting go to the end of the line and wait in line. SERIOUSLY? Get your policies straight!

I have had it. After decades of using this pharmacy I switched, and I am so happy I did.

Oh, did I mention? Six months ago the pharmacy started passing out customer service surveys. What does that tell you?

Hi, my name is Monica and I have RA.

A Study in Sleep

04 Wednesday Jun 2014

Posted by in Rheumatoid Arthritis

≈ Leave a comment

Tags

, ,

Two weeks ago, I wrote a post on my continued insomnia. This is still a huge problem but some things have changed.

I, still, for the life of me, cannot fall asleep! If I am really desperate I will pop a couple of Benadryls to make me groggy but I really wish to start sleeping on my own. Once asleep, I sleep soundly through the night. I just cannot fall asleep until 3 or 4 in the morning!

 

There were a few days I could not stay asleep because of the pain I was in. Whichever way I slept, the pressure on my joints kept me awake. I can no longer sleep on my right side because of the massive pain in my hip.

Unfortunately, this is the only side I can fall asleep on.  It is painful on my left side and on my stomach, but it more bearable.

 

I keep records of my medications and what time I take them and noticed I was taking my pain meds early in the evening.

I lowered my dinner dose and added Tramadol before bed. This really helped! Even though it does not help me fall asleep, it ensures I stay asleep.

 

Now, I just need to shut off my brain a little better so I can drift peacefully off to sleep.

 

Hi, my name is Monica and I have RA.

The Chronicles of the Orencia Infusion: May

28 Wednesday May 2014

Posted by in Rheumatoid Arthritis

≈ Leave a comment

Tags

, ,

The morning of my IV infusion was a breeze. I requested the day off from work. My appointment was at 10:30 so I ate my breakfast peacefully and took my meds. I cared for my pets. Stress-free morning!

Question: Has anyone else noticed if you eat breakfast quickly it sometimes feels like you never ate breakfast? For me, if I don’t eat breakfast over at least an hour it feels like it does not metabolize correctly. Am I weird?

 

Every month, the technician monitors my blood pressure because Orencia is a biological medication. This month, my BP was low! This was not an issue but it was surprising! I had three glasses of water to stay hydrated. I took my time eating my breakfast and it should have metabolized by then. My BP should not have been 100/60. That is not to say this is a problem. I mean, better low than high but still…strange. I generally range between 110-120/80-90.

It just goes to show how interesting the body is. Things happen for no rhyme or reason but the body always manages to stay even-keeled.

 

The IV went through my right arm this month. No pain, no itching, no rash, no redness. The whole ordeal took about 45 minutes with no interesting updates. I brought my Instyle magazine and read it, patiently.

My infusion happened during the peak of my non-sleep cycle. I spent 5-10 minutes reading the same three paragraphs and retained nothing!

 

Huh…

Maybe that is why my blood pressure was so low? Lack of sleep? 

When I returned home I took a nap. As per usual, I felt groggy after the IV but thankfully, I did not need as long a nap as last month’s.

 

All in all, everything went smoothly. I had no trouble shipping my medications. I did not have any reactions. The infusion time was a little longer than usual but I think the technician made the drip slower because I did not have the usual IV reactions. This is a good sign! Hopefully, from now I will not have any bumps in the road!

 

Hi, my name is Monica and I have RA.

A Clenched Jaw is a Insomniac’s Nightmare

21 Wednesday May 2014

Posted by in Rheumatoid Arthritis

≈ 6 Comments

Tags

, , ,

1:00 AM

 

When I stopped the Ambien three weeks ago I took Tylenol PM to ease back into normal sleep.

When I stopped the Tylenol PM I slept on my own. I fell asleep well but I woke up regularly during the night.

Over the last week, the tables turned. I no longer fell asleep quickly but, excluding occasional pet disturbances, I slept well. The hours wasted away and so did my chances at a full night’s slumber.

I tried Lavender Epsom Salt baths, they calmed me down but didn’t lull me to sleep. I tried sleep sprays. I tried chamomile-infused hand creams. Nothing worked.

 

1:15 AM

 

I turn off half my lights one hour before I lay down. I lower the brightness and volume on my computer. I brush my teeth and complete my evening skincare routine half an hour before I lay down. I turn off my laptop and I read until I feel drowsy.

Drowsy but awake.

 

1:20 AM

 

I carry my stress in my jaw and clench it without realizing. I only notice when it feels sore. Years ago, I ground my teeth and tightened my jaw and neck. After years of practice, I broke the habit.

It is back.

I wake up in the middle of the night sore. I clench my jaw in my sleep? On top of not falling asleep, I am also not getting a good night’s rest.

I did not realize I was “stressed”. If I were to write down everything in my day I do not think I would come up with anything “stressful”. Things are going well right now, mundane, but well. Maybe that’s it? I don’t do mundane. I get bored quickly and look for a change!

Even as I write this post, I clench my jaw. I do not realize I am doing it so I cannot stop it. Even when I am aware and actively relax the muscles they bounce right back. This was a huge problem for me when I was a kid because it resulted in pain and other dental issues but I do not remember how to break this habit.

 

1:30 AM

 

I tried deep meditation and yoga before bed but all the bad thoughts I suppress, surface. I’ve tried laying there and hoping sleep comes to me. It turns into me checking the clock every hour and thinking “if I fall asleep now, I have X hours left to sleep…”

 

1:45 AM

 

Medications do not work neither do natural remedies like warm milk. I am hesitant to re-start Ambien because I experience weird side-effects with it (next day grogginess is not one, surprisingly!)

 

2:00 AM

 

What do you think: Is there something I have not tried that might help? Do you have any good stress-relievers you swear by?

 

Hi, my name is Monica and I have RA.

Rain, Rain, Go Away!

14 Wednesday May 2014

Posted by in Rheumatoid Arthritis

≈ Leave a comment

Tags

, , ,

I love rain. This is a good thing since I live in perpetual humidity. Even in the winter it is humid and the cold just seeps into my bones and chills me from the inside out.

I love to sit near the biggest windows, read a book, play on my laptop and drink a warm cup of cocoa and watch the rain batter the windows.

Thunderstorms are even better. I turn out all the lights, snuggle under blankets and watch the storm pass through. If the power goes out, the better! (Little monsters are not such a big fan of this pastime!)

DSCF6879

“Thunderstorms? No thanks.”

 

Unfortunately, especially over the last year, rain exacerbates my condition. My joints not only swell on the outside but I can feel it on the inside too. I feel a cushioning around my joints, like I am wading in a swimming pool. Everything else feels spongy, bouncy. It feels like my bone marrow swells up like a porous sea sponge. There are no nerves in my marrow so I cannot possibly feel anything but that bouncy feeling runs through my bones.

Joints aside, the rest of my body works at half-speed. I especially notice changes in my stomach. Food takes longer to digest and I cannot tolerate heavier foods. They sit in my stomach and make me nauseous.

It is so funny because I will wake up to an overcast sky and smile. I get to relax and enjoy Nature’s wonderful gift. I get to sit and watch the world. Even when I was little I could sit and watch out the window for hours…Then it dawns on me (I am not the most clear-minded person in the morning)…

“Uh oh…”

 

Anyone else? Does rain affect your joints or mobility? Does it flare up any other organs?

 

Hi, my name is Monica and I have RA.

Let’s Talk Specialty Pharmacies

13 Tuesday May 2014

Posted by in Rheumatoid Arthritis

≈ 4 Comments

Tags

, , ,

I have had trouble writing and finishing this post. This draft has been sitting here on WordPress. It has been months in the making but I keep running into issues left, right and center and get side-tracked…and annoyed.

 

But, let’s start at the beginning. Three years ago my insurance company switched from Walgreens to Accredo Specialty Pharmacy. Strike one. Okay, that is a little unfair. Accredo used to be smaller. Customer service was super, it was easy to get medications, prescriptions and co-payment information were processed quickly. Now, as more medical insurance companies partner with Accredo, the pharmacy has grown…and not for the better.

When I was on self-injections (Humira, Enbrel & Orencia) I received an invoice every month. I received my medications every month. My personal and doctor’s prior authorization were valid for one year. They processed my co-payment assistance information quickly. When they validated a new prescription, the old one was voided and removed from the system so there was no confusion. It was easy sailing and hassle-free for everyone involved. Even writing this all down, I realize how easy I had it…

Eight months ago I switched from the Orencia self-injections to the IV infusion and everything went hay-wire.

The usual happened: new prior authorization. The following were added: okay the shipment, add the doctor’s office address, allow Accredo to contact my doctor’s office. Okay, all that makes sense, right? This should all be easy to do. APPARENTLY NOT.

 

Side Note: I stopped receiving my monthly invoices. Anyways…

 

Accredo shipped my medications one week late for the first THREE months because they claimed they did not have my “permission” to contact my doctor’s office to schedule shipment. “They were unable to reach me over the phone.” Riiight.

I spoke to my doctor’s assistant. We came up with a solution. After every IV infusion we call Accredo together. I “okay” the shipment and she schedules it.

Every month I ask: what is my co-payment? Accredo replies: $0. I never questioned it because a) I had co-payment assistance and b) my insurance covers brand-name medications after I fulfill the deductible. So, in September, I assumed everything was squared away.

Everything was smooth sailing for a few months. Accredo sent out my medications two weeks prior to when I needed it, I sat for the IV on time. Crisis resolved.

 

Nope, not quite…

I received a 2-month delinquent bill for over $800 and a darling note informing me if I did not pay the full balance Accredo would not send out my medications.

EXCUSE ME??

 

I received a call a few days later informing me my co-payment assistance was not valid and the drug company was rejecting all invoices.

Orencia told me my co-payment assistance is valid as long as I am on the medication. What changed?

There are two separate co-payment assistance programs, one for the subcutaneous injections and one for the intravenous injections. Sure, that makes sense. Wish someone had told me, but hey, compared to everything else going on this is pretty minor. Except, I have a huge bill squashing my credit history. No biggie. My financial future is not important.

But wait…didn’t I switch medications seven months ago? Why wasn’t this caught…say, seven months ago? Why was I not billed? Why was my co-payment $0! I’m pretty sure 0+0+0+0+0+0+0=0 and ≠ 800 (please correct me if I am wrong!) After weeks (weeks!) someone informed me the 800 dollars were from the January and February invoices.

“I’m sorry, I can only see your information is not valid, you need to re-apply with Orencia”. Helpful, thank you. Frustrating but simple to do.

 

Let’s backtrack to that $800. After all, that is a lot of money and I would like to see that re-solved. I like my money, I work hard for it and I like to spend it (yes I am and have always been a self-proclaimed shop-a-holic), I have four pets, I have pretty steady medical bills and medications. But, I do not want to throw away my money on things I know I should not be spending money on! Who does??

I re-applied for the infusion assistance and Accredo said I was accepted, however, Orencia was still rejecting the earlier invoices. But, my co-payment was now $5.

I called Orencia. My approval was still pending. In fact, I was not even in the system yet. Strike…I have totally lost count…Accredo. How was my assistance covered when they had not even heard of me?

I actually have an answer to this one!

They were using my old subcutaneous information. Of course it wasn’t going through!

What happened to voiding prescription information as it changed?

 

Speaking of which, when my insurance made changes in March, they required new doctor’s authorization for all brand name medications. We followed protocol.

In April, we hit another snag. We tried to schedule shipment and Accredo told us we needed prior authorization because it had expired. Why, you ask, after one month’s validity??

Because they were looking at the subcutaneous prescription, not the IV one. 

 

Well, no wonder there was confusion.

IMG-20140326-00592_1395878705527_n-3

When I’m feeling low, look who takes care of me!

 

Waiting to hear back about the refund for that first bill. But, in the mean time, let’s add to the insanity…

I called Accredo to schedule shipment for my May infusion and they told me they already delivered it to my doctor’s office…without my consent? They no longer need it every month. Good! But wait, there’s more.

Orencia is still rejecting the invoices and I have to pay out-of-pocket. I spoke to a customer service rep and updated the Orencia information. No wonder everything was rejected. They STILL had the Orencia subq. information up. They are now re-submitting every claim from January to the present so my next question is:”If I am paying out of pocket, why I am I not receiving bills?”

The rep transferred me to Billing. “Do you still reside in Colorado?”

“NO! AND I HAVEN’T BEEN FOR THREE YEARS!”

 

Over the last THREE years I have continuously told them to make my permanent residence the one I live at now. And every time they “say” they do. But somehow ALL my bills end up in Colorado.

I am beyond annoyed! Because of Accredo’s stupidity my credit score dropped this year. I very angrily told the person I was speaking with to look through my history. It clearly showed I paid my bills on time, days within them sending the bill. I asked him to look for any discrepancies.

He apologized profusely and said “No, I agree, anyone who should have taken the time to look through your account should have realized the last few months’ activity was erratic and unusual.”

He apologized for the trouble I had gone through because they could not disable my former residence properly and he contacted a supervisor to completely erase it from the system. Usually, all addresses are kept in the systems but old ones are “disabled” and the current becomes the first in line.

For whatever reason, nobody could disable my Colorado residence properly and as a result I was not getting my bills and then receiving delinquent ones.

 

Things seem to have simmered down, however, I still have not received a bill, or any information on a refund. Right now, I do not have the mental or physical energy to go through all the calls again.  I am going to wait until I need to schedule the next shipment.

 

How about you? Are you one of the lucky ones with smooth sailing or have you have increasing problems with your insurance companies? Please comment! I really want to hear about your experiences!

 

Hi, my name is Monica and I have RA.

Beauty Dry-Brushing: the Healthy Exfoliating Method

25 Friday Apr 2014

Posted by in Skincare

≈ 2 Comments

Tags

, , , , ,

Photo ℅ beautyhabit.com

I caved and bought a dry brushing body brush (that’s a mouthful)! Apart from it’s basic exfoliating, the benefits of dry brushing are vast. Beauty dry-brushes promote good circulation, healthier immune function and cellulite removal (I cannot vouch for the latter) as well. I bought the Urban Spa Cellulite Bamboo Brush from beautyhabit.com because after some research I thought it was the best dry brush  for my body. It can hang upside down on a hook, it has bristles on one side and massagers on the other for a two in one whammy.

So what is the best way to dry brush your skin? I start at my feet and slowly brush upwards in circular motions. I do the same thing with my upper limps starting with my palms and brushing in towards my chest.

It makes sense since it pushes circulation towards the heart, the hub of oxygen transport in the body. But, does it truly matter when blood flows in every direction? Of course, I do not want the bad stuff circulating longer, but the process is so quick it does not really matter. Either way, it does not hurt or take longer to brush upwards in circular motions, right?

As an autoimmune patient, I do agree dry-brushing strengthens the immunity. While it may not help me beat an infection, the mild massage stimulates the lymphatic system. My RA makes me less active so I need all the help I can get to keep my body moving, both inside and out. Sure, everything in the body moves at the same speed but as I get older these systems slow down which is not doing me or my condition any favors! Just like a massage helps the lymph nodes empty the “trash”, dry-brushing does the same thing.

I notice I am more alert and awake. I would not say my energy levels are higher but I do feel less foggy. Pain? The big things are still difficult: climbing stairs, lifting pets, cooking dog food, but “sensations” like prickling and tingling are gone.

That being said, the bristles on this specific tool are rough so I have to be careful not to go over the same spot more than twice. I only dry-brush every other day, otherwise, my skin cannot heal fast enough.

I think dry-brushing is a good idea. While it is a more expensive beauty item, I think it a great investment. It revitalizes, rejuvenates and exfoliates. But, if you have sensitive skin, I would steer clear. A massager is your best option. Find a model that does not drag on your skin so as not to irritate it!

Hi, my name is Monica and I have RA.