Wednesday, April 24, 2013

April Articles on Answers.com

You can find a complete list of all the articles I have published on Answers.com by clicking here. Below is a list of the new articles I published in the month of April.

Rheumatoid Arthritis (RA)

Juvenile Arthritis (JA)

Other Types of Arthritis and Related Conditions

Arthritis Medications

Tuesday, April 23, 2013

How Do You Dress A Tornado?

I really can't believe it, but OZL will be 11 months old in only 8 more days!! One year ago today I was 8 months pregnant, dealing with RA flares, and being tested for preeclampsia, which I eventually was diagnosed with resulting in bed rest. As soon as I hit 37 weeks, OZL was born via C-section. And, via some insane time warp, he will be turning one next month!!!

These days, OZL is interested in everything. He crawls in all directions at about the speed of light and pulls himself up on anything he can reach, reguardless of whether or not it will actually support his weight (case in point: he pulled a folding chair over on himself in music class this morning.) Most of the time he is speedy and full of energy and a very happy baby. Though he has also spent a fair amount of time over the past week or so being a big old grumpyface since the poor little dude has 5 teeth coming in at the same time.

Getting him dressed in the morning is like trying to dress a tornado. He flips and squirms and wiggles tries to crawl away while my clumsy RA hands fight to snap those tiny snaps and button the little buttons and pull itty bitty socks onto itty bitty feet. If it would only stop snowing I'd just put a clean diaper on him and call it a day! (Welcome to spring in Colorado - we've had more snow in the past few weeks than we got all winter.)

Honestly I have been struggling to keep up with him lately, especially since PT doesn't really seem to be helping. Both my knee and foot and all the muscles around them have been hurting a lot, and my knee has been doing this weird cracking/popping thing. The kneecap hasn't dislocated again (thankfully) but it doesn't feel like it's getting any more stable either. I'm wondering if surgery is imminent - and if it is how on earth I will ever keep up with OZL then?

I do have a college student who comes twice a week to watch OZL so I can have a couple of hours to get my writing done, but lately I've had to use most of her time to go to PT rather than work. So I'm using all of OZL's nap times to do my writing for Answers.com. I'm getting the work done, but I have almost no time to myself to rest or relax these days.

Hopefully I'll find a way to get a break soon!

Wednesday, April 17, 2013

Ughhhhhhh!

Speaking of "specialty" pharmacies, guess who called me this morning? CVS Specialty Pharmacy. The pharmacy responsible for this nonsense. The pharmacy that almost ruined my Christmas. The pharmacy I stopped ordering my Enbrel from over three months (and two specialty pharmacies) ago.

It was a voicemail with an automated call to remind me that I needed to order a refill. I was changing OZL at the time, so I had to call them back to ask them to please take me off their call list, which I had already attempted once with no success.

This time I at least talked to a human who actually apologized and assured me I wouldn't be getting any more calls. So hopefully that is the end but ughhhhhhhh. What a pain in the butt!! Why oh why can't I just go down the street to my regular pharmacy for my Enbrel?!?!?

In all fairness to specialty pharmacies, there is one that I actually had a great experience with. Wallgreens Specialty pharmacy did a very efficient job getting information from me and then simply proceeded to deliver my Enbrel every month without me even having to call them. The Enbrel just arrived, on time, every month. So if you've got the choice go with Wallgreens! And I only had one delivery from CuraScript but they weren't bad either. Though, now that I think of it, I vaguely remember getting an automated voicemail from them recently as well. So I guess I need to get in touch with them to get off their call list also.

So, in conclusion, specialty pharmacies = ughhhhhhh!

Tuesday, April 16, 2013

It Just Gets Better And Better

Aetna Specialty Pharmacy called me this morning. They wanted to see if I would be interested in enrolling in their specialty health care management program. The representative explained that if I was interested, the program would assign me a nurse who would support me through my treatment. The nurse would have regular counseling calls with me every couple of months, but would also be available at any time if I had any questions about managing my condition or administering my medication. Although this sounds like a pretty good program for people who have been recently diagnosed, I explained that I have been injecting Enbrel by myself for several years and dealing with RA for even longer than that. I said didn't think I needed help from their program.

The representative said she understood my decision but wanted to let me know that the program could also help me enroll in co-pay assistance. I told her I was pretty sure I was already enrolled in co-pay assistance (after all THAT). But, since I had her on the phone anyhow, I asked if she would be able to check my file to be sure. She said she would be happy to and put me on hold.

Several minutes later she came back and said she was unable to determine if I was enrolled in the co-pay assistance program. She instructed me to call the number on the back of my card for assistance with that issue. 

I'm sorry, but why exactly did you call me again? I thought you were going to help me? Doesn't anyone over there have any idea what's going on? What exactly does it say in my file if she was "unable to determine" whether or not I was enrolled?

It just gets better and better.

Luckily I have my sweet boys to keep me going.

Friday, April 12, 2013

Aetna "Specialty" Pharmacy

Why, why, why is dealing with specialty pharmacies such a giant nightmare??? Every. Single. Time.

APL just got an awesome new job (he is, in fact, skiing with his office today instead of working). But, of course, the new job came with new insurance. Luckily I was able to keep all of my doctors, but figuring out how to get my Enbrel ordered and paid for has been far less simple. It has taken eleven phone calls to get it all sorted out. And please keep in mind that all of these calls have to happen either during OZL's nap (which is also the only time I ever get to myself) or while simultaneously trying to entertain a 10 month old who has recently discovered that he has the ability to explore and get into everything.

CALL #1: APL calls Aetna insurance to ask how much we will be charged for my Enbrel and Cymbalta prescriptions. He asks about these prescriptions by name and in particular, because we know they are expensive and not always well covered. The representative tells him that with pre-authorization from my doctor, both will be covered at the regular co-pay of $30. We are happy.

CALL #2: I call my rheumatologist and give him the number needed for pre-authorization of my expensive meds. His awesome nurse faxes the info to Aetna right away. 

CALL #3: Then I call Aetna insurance to ask them what pharmacy I need to use to get my Enbrel prescription filled. They give me the number for Aetna Specialty Pharmacy and tell me my doctor will need to call in the prescription. 

CALL #4: I call my rheumatologist back and give him the pharmacy number. He sends the prescription over right away.

CALL #5: I wait a couple of days for the pre-authorization to go through. Then I call Aetna Specialty Pharmacy to set up delivery of my Enbrel. They tell me the pre-authorization hasn't gone through yet. I tell them I know my doctor has sent it already. They tell me to call back later.

CALL #6: I call my rheumatologist and talk to his nurse, who assures me that she sent in the pre-authorization info as soon as I asked her to. But she is extremely awesome so she calls them again right after talking to me.

CALL #7: I wait a few hours and then call Aetna Specialty Pharmacy back to set up delivery of my Enbrel. They tell me the pre-authorization still hasn't gone through, though I assure them that it has. They tell me to call back tomorrow. I figure I have no choice but to agree.

CALL #8: The next day, I call Aetna Specialty Pharmacy again to set up delivery of my Enbrel. They try to tell me that the pre-authorization still hasn't gone through. I tell them that is impossible. Then they change their mind and tell me that there is a problem with the date on the pre-authorization. I tell them that also is not possible because I know for a fact my nurse sent it in twice. After about 30 minutes of arguing and being on hold, they finally set up my delivery of Enbrel. The representative tells me that I will get a 3 month supply and it will arrive on Thursday.

To be fair, the Enbrel actually does arrive on Thursday. So points for that. But it is a one month supply instead of a 3 month supply. And we get charged $250.

CALL #9: I call Aetna Specialty Pharmacy again and say I have some questions about my shipment. This representative tells me that my insurance won't approve a 3 month supply, so I'll get an automated call to remind me to order my refill every month. Ok fine. Then I ask about the $250 charge. She tells me that because it is an injectable medication the regular $30 co-pay doesn't apply. Instead the policy states that we will pay 25% of the cost of the medication up to a maximum of $250. Since 25% of my Enbrel costs over $500, they charged us $250. So, apparently, the representative that APL talked to back in call #1 just flat out gave him the wrong information even though he asked her to check on our coverage for Enbrel specifically. But don't worry, the pharmacy representative tells me, there are some co-pay assistance programs out there. She gives me phone numbers for three such programs and I dutifully write them down. 

CALL #10: I call the first co-pay assistance program. They tell me that I qualify for the program, but that it should have been set up through my specialty pharmacy. She instructs me to call the pharmacy back and ask to talk to a patient advocate.

CALL #11: I call Aetna Specialty Pharmacy yet again. I ask to speak to a patient advocate. The pharmacy representative has literally zero idea what I am talking about. I explain to her that I am trying to get some co-pay assistance since I can't afford $250/month for my Enbrel. She tells me I need to enroll through the co-pay assistance programs and tries to give me the phone numbers again. I tell her that I just spoke to the co-pay assistance program and that they said I needed to set it up through the pharmacy. She puts me on hold.

Without any warning, I am transferred to another department. I am surprised, but I re-explain what I am trying to do. This representative tells me that I already have co-pay assistance. I tell her, no, I was just charged $250 for my last shipment. She (rather rudely) tells me I already have it because she just put it in place for me. I (as politely as possibly) say that is great, and ask how much I will have to pay in the future with the co-pay assistance in place. She tells me it will be 100% covered.

Whaaaaaat?

You mean to tell me that the Aetna Specialty Pharmacy itself was capable of enrolling me in a program in which my co-pay would be zero dollars but it took me two weeks and eleven phone calls to get to this information?!?!? 

Oh. My. God.
Mommy needs a drink. And it's only like 10am.

(Please enjoy the unrelated yet adorable picture of my son and his daddy. Looking at their happy faces is the only way I am managing to stay sane right now.)

Tuesday, April 2, 2013

PT and/or Surgery

I saw the orthopedist on Friday about my foot and my knee. There's good news and there's bad news.

The good news is that she isn't worried about my foot. It's bruised as a peach but it will heal. I'm supposed to wear the very sexy shoe you see in the photo for the next few weeks to help it heal, and I should try to stay off it when it hurts too much, but other than that it will be fine.

Surprise, surprise: the bad news is my knee. According to the orthopedist, the ligament that is supposed to hold your kneecap in place was likely destroyed the very first time my knee went pop. And apparently there's nothing we can do to get it back. So instead we're going to try some PT to strengthen the other muscles in my leg. This is supposed to encourage the kneecap to stay in place, but there's no guarantee it will keep my kneecap from dislocating again. Unfortunately, any additional dislocations could damage my knee and might lead to osteoarthritis (the last thing I need). So, if PT doesn't help and/or my kneecap keeps dislocating itself I may need to consider knee surgery.

In the meantime I'm just hobbling around with OZL (thankfully with the help of my mom right now!) and trying to stay positive. 

March Articles on Answers.com

You can find a complete list of all the articles I have published on Answers.com by clicking here. Below is a list of the new articles I published in the month of March.

About Arthritis

Osteoarthritis (OA)

Rheumatoid Arthritis (RA)

Juvenile Arthritis (JA)

Other Types of Arthritis and Related Conditions

Wednesday, March 27, 2013

Pop Goes the Kneesel (YET AGAIN!)

It happened again on Sunday night. Only this time was worse than last time or the time before. Much worse.

I was standing in the kitchen holding a mango that I was going to cut up to give to OZL for dinner. I started to take 2 steps across the kitchen to get a knife, but instead I found myself on the floor in a lot of pain. This time I reached down to my knee and actually felt my kneecap in the dislocated position. And I'm pretty sure I was actually screaming in pain until I felt it pop back into place under my hand. Then I was at least able to breathe a little easier, though I was still in an awful lot of pain.

Luckily I wasn't holding OZL or a knife when I fell. Luckily my sister and APL were both there to help me. They practically carried me to the couch where I spent some time with ice on my knee. Then I took some painkillers and hobbled off to bed. I figured, like the last two times this happened, that I would feel better in the morning. Maybe I would have to wear my knee brace for a couple of days, but I didn't expect anything worse.

But I was wrong. The pain kept me awake most of the night - and sometime around 3am I realized that it wasn't just my knee hurting, my foot was hurting too. By the time it got light I discovered that my foot was completely purple. Somehow in the process of falling I had managed to hurt my foot too. And my knee was still a swollen mess. 

Since I can't drive (it's my right leg) and I am having trouble walking, let alone being able to care for OZL, APL had no choice but to take the day off from work to take care of us and drive me to urgent care. We spent several hours at the doctors - primarily arguing about the fact that we do have insurance but we don't have insurance cards yet since APL just started a new job. That was a lot of fun. Eventually, after poking and prodding my knee and foot until I cried, they took some x-rays. 

The doctor wasn't positive, but said there may be a small fracture in my foot. Based on the bruising and the possibility of a fracture, he gave me a shoe/boot thing to wear that will keep my foot from flexing while I walk. Luckily there seems to be no permanent damage to my knee. But I do need to figure out what I can do to keep my knee from randomly dislocating itself with no warning whatsoever. So I have an appointment to see an orthopedist on Friday.

Which is a good thing, because last night as I was standing up from a seated position my kneecap almost popped out again. I somehow managed to move my leg or take weight off it or something so it didn't come out all the way, but I felt it sort of...slip a little out of place. And it was not a pleasant feeling. And I'm not loving the broken/bruised foot either.

I'm still having trouble walking and so taking care of OZL isn't very easy right now. Luckily my mom just so happened to be coming for a visit, so she is helping me out and APL was able to go back to work today. In the meantime I am trying to keep myself from fixating on the "what ifs" (what if I had been holding OZL? What if I had been on the stairs? What if I had been alone? What if I had been pregnant?) I'm really trying to focus on the future and figuring out how to make things better. 

But I will admit that isn't always easy. Especially when I am frustrated from being in so much pain.

Wednesday, March 20, 2013

Knuckle Injections

Today is not my favorite day.

OZL is cutting a tooth. I can finally feel it poking through his top gums. So he is drooling all over the place and is not a particularly happy camper.

On top of that, my hands have really been killing me for the past couple of weeks. It has been getting quite difficult to take care of OZL without a fair amount of pain. It hurts to put bottles together. It hurts to take them apart. Buckling him into the carseat or stroller is difficult and painful. And snapping all those tiny snaps makes me want to jump out a window. Though I have to admit I fumble almost as much with getting zippers started. But maybe the worst part is that OZL is starting to pull himself up and wants nothing more than to hold on to my fingers and pull himself up to standing. And how can I say no? He's so proud of himself and I am proud of him too. I want to help him learn and play with him and I don't want it to hurt anymore.

I've tried anti-inflammatories. I've tried other pain killers. I've tried ice. I've tried hot water. I've tried epsom salts. I even tried taping some of my fingers together to remind myself to try to give my hands a rest (though resting isn't very practical since I'm alone with OZL pretty much all day every day). None of it has worked, so I finally broke down and went to see my rheumatologist this morning.

Honestly I was sort of hoping for a diagnosis of tendinitis or carpal tunnel or something like that - both of which can be common post-partum and while doing repetitive tasks caring for a baby. But, no, it's my RA. My knuckles are swollen and inflamed which is causing the hand pain. Despite giving up breastfeeding to go back on my medications, my RA is still not completely under control. 

This information is both depressing and frustrating. Because we do want OZL to have a sibling in the not-too-distant future, my options for treatment are actually quite limited. Though I know it did help control my RA in the past, I've made the decision to stay off methotrexate until I am finished having babies. Methotrexate takes a while to start working and then takes at least 6 months to get out of your system before it is safe to get pregnant, and that's a timeline I just can't commit to right now. Not to mention that weaning off it in the first place is an experience I'd rather not have to repeat. And I'm pretty sure I've made my personal feelings about taking prednisone abundantly clear.

So, for the time being, I've opted for prednisone injections straight into my knuckle joints. Which, as you can probably imagine, is about as much fun as it sounds like. I got them in both hands this afternoon. They are supposed to take effect in a day or two and last two or three months. Hopefully this will help me regain the use of my hands for taking care of OZL (and, you know, anything else I might want/need to do).

In the meantime, now that we know my RA isn't being completely controlled despite all the meds I'm on, we may need to seriously consider how long we want to wait before trying for another baby. It seems completely crazy to think about having a second one when I'm already having trouble caring for the first one, but the reality is that my RA is uncontrolled and will probably continue to get worse. So the longer we wait, the harder the second one will be.

And I guess I have to acknowledge that a third one just may not be physically possible for me.

Thursday, March 7, 2013

Hair (or lack therof)

It may not be visible to anyone else, but after several weeks of careful observation I am now sure: my hair is falling out again.

And it is everywhere. In the shower. In the drain (oh god was it ever in the drain!) On my pillow. On the sheets. On my son. In my son's diaper (how does that even happen?!?!)

Now: which of my cocktail of medications could be the culprit this time?