Tuesday, May 3, 2016

When A Trip To The Mailbox Feels Like Something Out of A Horror Movie

It's that time again! I had my most recent infusions of Rituxan in March, so I knew I could expect a big bill in the mail since I know the drug alone costs more than $10,000. The bill finally came last week with a "patient responsibility" amount that leaves me wondering how I'm supposed to be able to buy groceries - let alone send my kids to college. 

As always, I am extremely grateful for the Genentech Rheumatology Co-pay Card Program for Rituxan Patients, without which I would never be able to have access to this medication that is working so amazingly well for me. Recalling the discussion I had with the product manager back in December, I logged on to their website this morning to see if the improvements she told me about had actually become realities.

I was pleasantly surprised to see that it is now possible to create an online profile to help you manage your current co-pay card. Unfortunately, I had some trouble with the site and got kicked off by their server multiple times before I was able to manage creating my account.


After getting kicked off and re-typing my information several times, I finally managed to actually create my account and log in. Once inside my account, I experienced quite a bit of delay/freezing as I tried to navigate from topic to topic. But, while perhaps not the most intuitive organization, I was pleasantly surprised by the improvements in the quality of information provided. 

At least theoretically, it looks like patients will be able to use this online account to determine the exact amount that is loaded to their co-pay cards, allowing them to bypass the long and terrible phone tree. And under the "Using Your Card" section, I actually found an explanation for the $10 they mysteriously did not load to my card last time - turns out there's a $5 per drug co pay, which was never mentioned in any of the other previous materials I received or research I had done or by any of the many representatives I had spoken to. So I'm glad they are now upfront about that little detail. 

The thing I am most excited about is the possibility of being able to upload my Explanation of Benefits (EOBs) instead of having to download them, print them, give them to my husband so he could take them to work to fax them, and then call the co-pay assistance program to demand someone track down the "lost" faxes. Unfortunately the new system still does leave something to be desired. There isn't an obvious tab in the menu to alert patients that uploading their EOBs is even a possibility - and the "Using Your Card" page still directs patients to fax the EOBs. But if you look under the Dashboard, there is a sentence with a tiny link: "To upload your Explanation of Benefits (EOB) click here"


This takes you to a page where you can, at least theoretically, upload your EOBs. After I attached my EOBs and clicked submit, I got a tiny green sentence that said "Patient File Uploaded." But after I navigated away from that particular section there was no record of confirmation that my EOBs had been successfully received, nor did I get any sort of email confirmation. So I'm not holding my breath.


Also, though FAQs still don't mention this as a possibility, I'm guessing I'm going to have to send them a Claim 1500 Form again this time anyways - so I already called my doctor's office to request that they send it to me. And it, of course, comes via snail mail. 

So I guess this giant bill will just have to sit on my desk a while longer while I continue to try to sort everything out. Which is unfortunate, because just looking at that number makes me feel a bit ill.




Friday, April 29, 2016

Facing Forward: Molly

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Molly
Location: Baltimore, MD
Diagnosis: Rheumatoid Arthritis, Type 1 Diabetes
Age at Diagnosis: 9 with T1D; 32 with Rheumatoid Arthritis

How are you currently treating your condition?
For RA - I'm currently on injections of methotrexate weekly and Humira biweekly. I try to exercise almost every day and I do physical therapy - currently for my knee and hip. I also use acupuncture.
 
What are the biggest challenges you have faced since your diagnosis?
Trying to stop figuring out "why?" I like to know the reasons behind everything. RA is so unpredictable. I'm constantly trying to figure out what I did that would cause a flare up, etc. There truly aren't many answers and I need to work on letting that go!

What are your favorite tips and tricks for managing everyday tasks?
I try to move throughout the day. I have Fitbit step goals posted on my desk at work - such as 3,000 steps by 10am. This keeps me moving and helps keep fatigue and achiness a little more at bay. I ask for help from my family and delegate things such as taking the trash out and emptying the dishwasher to my children so I can do more important things, like make dinner.

How do you manage to keep facing forward every day?
I keep facing forward every day for my family. I don't want my children remembering me as sick - I want them to remember that I'm funny and smart and love them so. If I allow myself to wallow in a dark place and let anger or depression take over, I'm not only hurting myself and my chances of getting any better but I'm hurting those around me. A positive attitude can truly make a difference when faced with a disease.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back to the day I was diagnosed with RA, I would tell myself that this is going to be a lifelong struggle. This isn't going to just go away. It's also not guaranteed to be as "bad" as stories you've read online. You'll still be working. Your kids will be doing great. You'll keep fighting and need to be prepared to do that.

Do you have a blog you would like to share?

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Tuesday, April 26, 2016

Joint Decisions Facebook Chat - Raising a Family While Living With RA

Join us today as I host the first ever Joint Decisions Facebook Chat! The topic is one that you all know is near and dear to my heart: Raising a Family While Living With RA!

Head on over to the Joint Decisions Facebook Page to submit any questions you may want to ask me - and I'll start answering them live at 2pm ET! 
Hope to chat with you later!

Friday, April 22, 2016

Workplace Discrimination – Know Your Workplace Rights

It is important to remember that you have rights in the workplace!

Facing Forward: Jaime

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Jaime
Location: St. Louis, MO (Go Cards!)
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: 32

How are you currently treating your condition?
So. Many. Meds. I give myself an injection of Humira every other week and take methotrexate every week. Every day I take hydroxychloroquine, folic acid, and ibuprofen. For the particularly troublesome flares, I take prednisone or prednisolone.
 
What are the biggest challenges you have faced since your diagnosis?
By far my biggest challenge has been with acceptance. Accepting that life will always be at least a little different than it was before. Accepting that pain, weakness, and fatigue will always be a part of me. Accepting that my boys will never remember the pre-RA me (who I still consider to be the "real" me). Accepting that RA me is the real me. Accepting that I simply cannot do everything I used to do, and still want to do. Accepting that I have to draft much shorter daily to-do lists and allow myself the grace and patience when I don't even get the shorter list accomplished. Accepting that I can't just "power through." Accepting that my career path may end up looking different than I had previously envisioned. Accepting that sometimes I will miss that really fun social event regardless of how badly I want to go or how long it has been since I have seen those friends. Accepting that there is value in rest and taking care of myself. Accepting that I need help. Accepting that none of these changes really matter because I am still me and i still have an overabundance of blessings.

What are your favorite tips and tricks for managing everyday tasks?
Rest. Rest doesn't make my weakness or fatigue go away, but it does prevent them from taking over my day. Openness and honesty are also big ones. I have to be open and honest with myself, my family, and my employer/coworkers about how I am feeling, my current limitations, and whether I need help. I am incredibly fortunate in that I have found most everyone to be helpful and accommodating when they know what is going on. By delegating less important tasks, I am better able to focus my time and energy on the things that matter most, both at home and at the office. Gratitude also plays a huge role in managing my day. I start each day by acknowledging something for which I am grateful. Doing so prevents me from spiraling into a "poor me" tailspin, which is terribly unproductive.

How do you manage to keep facing forward every day?
See those three handsome fellas? They are all the motivation I need to keep facing forward. I want so badly for them to have a life where RA is not the leading actor, or even a supporting role. I face forward so that in their lives, RA is the random celebrity just dropping in for a momentary cameo appearance.

Truthfully (remember what I said about the importance of honesty???), I manage to keep facing forward not because I want to, but because they allow me to. My husband is an amazingly selfless human being and an incredible father. He has taken all of these changes in stride and has really stepped up to the plate. He makes our life possible. We also get a ton of support from my family who is always there to take on the less glamorous tasks (dishes, anyone?) so that I can spend my limited energy on the fun ones (playground!) We have great friends who are quick to lend a helping hand or a listening ear. I would be remiss if I didn't also acknowledge the role of my employer in my ability to keep facing forward. As a litigation attorney, I am used to a demanding, high-stress and intense work environment. But my firm has been a tremendously supportive partner as I navigate my RA; helping me work to my full potential, without making me feel "less than." My cup runneth over.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Don't borrow worry. Focus on the here and now. There is no sense obsessing about a diagnostic test when you will get the results next week. Save that mental energy for something that matters. Everyone's future is unknown, chronic illness or not, so you might as well love the life you live.


Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Thursday, April 21, 2016

Mark Your Calendar! Joint Decisions Facebook Chat - Raising a Family While Living With RA

While I always encourage my readers to contact me if you ever have questions - or join my Mamas Facing Forward support group! - if you'd like a chance to chat with me "live" about raising a family with rheumatoid arthritis, please mark your calendars!

Next Tuesday I'll be hosting the first ever Joint Decisions Facebook Chat! You'll be able to submit questions on the Joint Decisions Facebook page starting Tuesday morning - and I'll start answering them live at 2pm ET! Make sure you like Joint Decisions on Facebook to stay posted about the event.

Hope to see you there!

When It Comes To Managing Opioid Use, Can We Get A Little More Carrot Please?

We’ve already have plenty of sticks in place to discourage patients from using opioids – from burdensome regulations to social stigma to now, potentially, the need to be urine tested. But where are the carrots? Where are the recommendations and policies making the alternatives to opioids easier for patients to access and afford?

Monday, April 18, 2016

Understanding the CDC Opioid Prescription Guidelines

Some important things to keep in mind when considering the new CDC guidelines. First, the guidelines are just that: guidelines. In fact, they are actually voluntary.

Product Review: Nimble

I received a sample of Nimble for free, but I was not compensated for this post. All thoughts and opinions are my own. As stated in my product review policy, my reviews will always be 100% honest. 

I was recently contacted to see if I would be interested in reviewing a new product called Nimble.* Nimble is a thimble-like device that you can use to cut open plastic or paper packaging with the simple swipe of one finger. It sounded like an interesting product, especially since I know from experience that getting into packages can be a real struggle when you are dealing with hand pain. 

I wondered how difficult it would be to use - i.e. how much pressure would you need to apply to make it work? What if my pointer finger was in too much pain - would it work on another finger? It's always a balancing act figuring out how to use tools with painful hands. But I thought that even if Nimble required concentrated effort from a particular finger, it might still be easier than awkwardly using scissors or a knife to open a package. 

When my Nimble arrived I was pleased that it fit comfortably on whichever finger I wanted to use. The little ceramic "blade" is tiny - you can even run your finger over it without getting cut. And the amount of pressure needed to cut through packaging is very minimal. My only piece of constructive criticism is that it wasn't immediately intuitive to me whether there was a "right" or "wrong" way to face the blade for use - but it was easy enough to figure out after playing around with it for a little bit. 

video

The developers of Nimble have launched a Kickstarter campaign to fund the second launch of Nimble. If you aren't familiar with how Kickstarter works, you pledge a certain amount in return for the product - but you only get charged if the campaign meets its goal. Once the campaign closes you will get your product, though it may take a bit of time as the funds you pledge go to creating the product. 

Friday, April 15, 2016

Facing Forward: Shelley

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Shelley
Location: Texas, USA
Diagnosis: Fibromyalgia, Lyme Disease
Age at Diagnosis: 26

How are you currently treating your condition?
For the most part i am only taking medication that helps with the symptoms right now. For pain I regularly take Tramadol. I also live with my heating pad and often take warm baths with Epsom salts. I do gentle yoga to help stretch the parts of my body that hurt the most. And hwen that fails to help I do take a muscle relaxant to keep my muscles from getting too locked up from pain and to help me sleep.

Generally I try to just keep my lifestyle in accordance with my body's allowances. I work very hard at pacing myself and trying to not overtax my body. I try to listen to the signals it sends me, though that doesn't always go as planned.
 
What are the biggest challenges you have faced since your diagnosis?
Learning to accept the fact that there are things I used to do that I can't do anymore. I've always loved the outdoors, I even have a degree in recreation, and being sick has put a lot of limitations on my outdoor adventures. I've had to find a way to accept that hiking and rock climbing are things of the past, though I still go on walks as much as possible. It still hurts to watch other people do those things, but I'm continually working on trying to accept the way things are.

What are your favorite tips and tricks for managing everyday tasks?
I try to pace myself as much as possible, and not get down on myself if I fall behind because I'm not feeling well. I tell myself I'm doing okay as long as I can accomplish at least one physical task every day, even if it's only emptying the dishwasher. I've found that cleaning works best for me a little at a time. If I take 10 minutes here and there throughout the day it tends to take less out of me than spending an hour cleaning all at one time.

I also try to schedule my life so that I don't overtax myself. I schedule things in advance and make sure that I allow for rest time after any event I participate in. For example, if I have a doctor's appointment one day, I make sure the day after is clear so that I can have time to recover if I need to. When things come up unexpectedly, I allow myself to say no if it's something I feel I can not do, and I refuse to feel guilty about it.

How do you manage to keep facing forward every day?
I try to take one day at a time as much as possible. I become overwhelmed when I think of the future and the reality of my illness, so I focus on how my illness affects me in the short term. This allows me to find joy in the small things and focus on the good instead of thinking about how miserable my body feels.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
That getting a diagnosis isn't the magical fix I thought it would be. I was undiagnosed for so long, I thought getting a diagnosis would make everything better. Unfortunately it was really the beginning of a long, hard road that didn't lead to a recovery like I had hoped.

Do you have a blog you would like to share?
My blog is Chronic Mom. You can also find me on Facebook.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.