Monday, April 27, 2015

Facing Forward

If the Rituxan works, I won’t have to have another infusion for at least six months. However, I can’t really bear to think about what I will do if it doesn’t work.

Friday, April 24, 2015

Mamas Facing Forward!

I honestly don't know how I think I have the time or energy for this, but I have a new project to announce!! 

NOTE: Am total crazy person. I'm aware. But it's been a long while since I have felt so excited about something (other than my obviously adorable children) so I am going for it!

Mamas Facing Forward is my new private FB support group designed to help mamas and mamas-to-be facing chronic illnesses move forward with motherhood! Whether you already have little ones, are pregnant, are looking to adopt, or are just considering motherhood - if you have a chronic illness this group is for you! Part of a larger project, this group will serve as a preliminary forum to ask questions, share resources and ideas, and connect with each other. I also hope to gain feedback as I develop content for a new website.

Tuesday, April 14, 2015

Rituxan, Round 2

Two weeks ago, I had my first infusion of Rituxan. It took more than six hours. I had some nausea and general flu-like malaise for a few days afterwards, but luckily I didn't have any major side effects.

Those of you who follow me on Facebook or Twitter will know that I had my second Rituxan infusion yesterday. Since I didn't have any major reactions the first time, they were able to do this infusion a little bit more quickly. This time it only took four hours. But afterwards I still felt like a total zombie. Thank goodness my mom came over to help me with the kids until APL got home!

And now? We wait. It will be another couple of weeks until we can know whether the Rituxan will work. My goal is to have my other treatments work well enough to get off the prednisone completely, so I'm keeping my fingers crossed. If it does, I won't need another infusion for at least six months. If it doesn't....well, I guess we'll cross that bridge when we get there.

SB71 Signed Into Law!!

Last week I was invited to the Governor's Office to see SB71 signed into law! In case you don't remember, SB71 was a piece of legislation that allows pharmacists to substitute biosimilar medications for biologic ones, but only if pharmacists notify patients and their doctors that a substitution has been made. Patient advocates- - including me! - worked hard to make sure this notification requirement made it into the final version of the law. The legislation serves to open up access to newer, less expensive medications for patients in Colorado while also protecting our safety and right be informed and control our own treatment decisions.

I am excited that I was able to play a role in turning this bill into a law. I testified in both the House and Senate Committee meetings by sharing my experiences with biologics as well as my opinion about what the development of biosimilars means for patients. I was also interviewed on this issue by the International Business Times, the Denver Business Journal, the LA Times, USA Today, and CBS Denver.

I think this victory is an important reminder of the power of sharing your own story with lawmakers. All of us have a role to play in making the future brighter and safer for patients living with chronic conditions. 

If you are interested in getting involved, please visit Seth's 50 State Network to learn more!!

Rheumatoid Arthritis Guy's Hope Care Package Exchange!

My friend Rheumatoid Arthritis Guy is working on a really cool project - and you can participate too! It's a hope care package exchange for people living with inflammatory arthritis. Here's how it works:
Quite often the smallest gestures make the biggest differences, especially while living with inflammatory arthritis. Join us for the first ever Hope Care Package Exchange, and help make a positive difference in someone else’s life, while someone else works to make a positive difference in your life.

How Does This Work?

If you are interested in joining this Hope Care Package Exchange, sign up below before Thursday, April 30, 2015.

During the first week of May, you will receive a message with the name and email address of the person to whom you will be sending a Hope Care Package. Contact your Hope Care Package recipient directly in order to get their mailing address. While you’re at it, feel free to share a little bit about yourself, and about how you LIVE with inflammatory arthritis.

Now, all you have to do is start putting together your Hope Care Package! All Hope Care Packages should be exchanged by Tuesday, June 30, 2015.

What Should Be Included In Hope Care Packages?

Be creative, and think about things that have made a positive difference in your life, and what you think might make a positive difference in someone else’s life. This may include, but not be limited, to:
  • Arts and Crafts: knitted scarves, gloves, or hats, small crochet or quilted projects, poured candles, etc.
  • Creative Works: framed photograph, homemade books, drawing and paintings, etc.
  • Small Gifts: bodycare and relaxation products, jar openers and other assistive devices, a book that has really helped you, a mug and some tea from your corner of the world, etc.
Please expect to spend around $20-25 US Dollars on your Hope Care Package.

Anything Else?

Yes. Please remember that this Hope Care Package Exchange is based on trust and is only for those who are serious about participating and following through. Rheumatoid Arthritis Guy assumes no responsibility for people who sign up but do not follow through on their commitment to send a Hope Care Package.

Oh, and the personal information that you provide below will *only* be shared with the people you will be sending to/receiving from. Your name and email address will otherwise be kept private, and will NOT be shared with any other person, organization, or company.
I've signed up to participate and you can too! CLICK HERE TO SIGN UP TO JOIN US! 

Tuesday, April 7, 2015

Facing Forward: Jeanmarie


Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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: Jeanmarie
Location: Northern Minnesota
Diagnosis/Diagnoses: RA
Age at Diagnosis/Diagnoses: 25 (5 years ago)

How are you currently treating your condition?
I have been getting monthly Remicade infusions for over 2 years (see picture) and have had good to very good results.  I am also taking a small dose of Prednisone daily.  I stopped taking Methotrexate in June and have also tried Enbrel, Plaquenil, and Sulfasalazine (triple combination therapy).    

What are the biggest challenges you have faced since your diagnosis?
When I was first diagnosed, I had a pretty good idea of what my upcoming challenges would be, including limiting and restricting my activities, balancing my demanding work and family responsibilities, and finding a treatment plan that works for me.  What I didn’t expect were the challenges I would face with my insurance company (dictating what I can take and when), paying for and receiving medications, overcoming my fear of needles (self-injections and infusions), and the affect the medications/disease would have on my appearance.  My self-esteem has taken a detrimental blow.  It is a downward spiral of weight gain, moon face, swollen/deformed joints, etc.  I wish I could start a hard-core exercise regimen and get back to being fit, but the disease won’t let me.  I was taking 60 mg prednisone when I was married – I look at my wedding photos and don’t even recognize myself.  I was just joking with a coworker that I hate shopping for jeans… not because it is frustrating to find jeans that fit my hips, butt, etc… but frustrating to find jeans that fit my (swollen) knees!

What are your favorite tips and tricks for managing everyday tasks?
OXO Good Grips kitchen utensils are a life saver.  I use heating pads and a lot of pillows to help me sleep.  I’ve become an expert at manipulating the pillows (under the elbow, between the knees, under the feet, etc.) to take a little pressure off.  I also only buy products that I know I can open/close easily (shampoo, toothpaste, dish soap, etc.).

How do you manage to keep facing forward every day?
First and foremost: my daughter (age 3).  This little bundle of joy and energy keeps me going!  Humor gets me through when sometimes other things don’t.  And, finally, music… this has been a staple in my life for any type of hard time.  Music comforts me.  It motivates me and gives me hope.  If I’m grocery shopping and finding it difficult to keep standing and walking, I think of a good song to get me through and just play it through my head to take my mind off the pain.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I’m proud of you!  And, it is OK to let some things slip.  I am still struggling with this today.  I have a master’s degree.  I work very hard at my job.  I always have a clean house.  I am a good wife and mother.  I look for new recipes and cook dinner most nights.  I “Pinterest” activities and projects for my 3-year-old to keep busy.  I keep my daughter fed, clean, clothed, and (mostly) happy (of course, there are occasional toddler tantrums that transpire!).  I pay the bills, balance checkbooks, and take care of all financials.  And… because of this… I’m exhausted.  All.  The.  Time.  I very rarely relax or have time for myself.  Even during extreme flares, I am still trying to do the dishes, clean the floors, and wash the laundry.  I have a problem.  I need to let go and ACCEPT the fact that I need to slow down and take care of myself.  I also need to start asking for help.  Because I keep doing all of these things every day, people assume that I am doing OK and that I don’t need help.  I have an entire support system ready and able to jump in and help… I just need to learn to let them.

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

Monday, April 6, 2015

Facing Forward: Christina

Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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: Christina
Location: Southern California
Diagnosis/Diagnoses: Juvenile Rheumatoid Arthritis
Age at Diagnosis/Diagnoses: 3

How are you currently treating your condition?
Nabumetone 500mg twice a day and Enbrel 50mg once every two weeks (but I've decided to stop Enbrel again because I've had too many infections from it). Rest, hot showers, and massages whenever possible – but they're all far and few with two little ones running around. Remembering to slow down is probably the best medicine...if you overdo it today, you'll pay for it tomorrow.

What are the biggest challenges you have faced since your diagnosis?
I've had 7 surgeries in less than 10 years, including 4 joint replacements and a major foot surgery that left me in bed for 2 months. But the hardest part is my JRA has interfered with having children. Arthritis medication forced us to go through IVF and we now have two beautiful babies, but plans for a third have been put on hold because of my JRA. I need another joint replacement and by the time I fully recover, my JRA and my age may play a factor in another pregnancy. My JRA has made it hard raising my kids as well. I can't just sit on the floor and play or hook the buckles on their car seats or even hook clothes with tiny snaps. I have a ton of help for now but look forward to the days when my kids are a little bit more independent and can do the little things that I can't. 

What are your favorite tips and tricks for managing everyday tasks?
Do what you can and the rest can wait! I still have trouble remembering that but it's a huge help when I do. And make your home work for you as much as possible. Modify anything that doesn't work for you. Don't force yourself to struggle to do everyday things or you'll wear your joints out faster.

How do you manage to keep facing forward every day?
I don't have a choice; my JRA isn't going to magically disappear. This is the hand I was dealt and I have to make the best of it for myself, my kids, and my husband. I have a beautiful life and family and I remind myself of that everyday. I have down days but I don't allow them very often.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
It won't be easy but it'll all be worth it. Just breathe and go with the flow.

Do you have a blog you would like to share?
My blog is www.curlybones.com. I'm horrible about updating it but I'm trying to find the time and inspiration to write again.

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

Tuesday, March 31, 2015

Not Everyone Has Faxes, You Guys

Just wanted to share another delightful interaction with my current insurance company! It never ceases to amaze me how insurance companies are able to have policies that actually make it more difficult for patients to get the treatment they so desperately need.

When my rheumatologist decided to switch me to Rituxan, my amazing nurse immediately faxed Aetna a request for prior authorization. A few days later I asked whether she had heard back from them. She hadn't, but because she is awesome she called them right away to find out the status of my authorization. Well it turns out that Aetna authorized my request to start Rituxan the same day that my nurse faxed it to them. But, instead of responding by fax (or any other method of communication commonly used in this century) they put my authorization letter in the mail. Which means that if I hadn't called nurse, and my nurse hadn't called Aetna, we'd still be waiting who knows how many more days for the prior authorization to arrive via snail mail. Instead I was able to have my first infusion of Rituxan yesterday.

So here's what I wanted to know: why is it considered a good policy to respond to faxes via mail? Aetna boasts a Twitter page called @AetnaHelp that is supposed to be "here to help, listen, and learn from you." So I went to Twitter and asked them to explain their policy. Here's how that went:


So, after I asked at least ten times for an explanation of their policy, the best answer they could come up with (after almost 24 hours) was this: not everyone has a fax machine. And, to be honest, that's something I actually agree with. Not everyone has a fax machine because it is no longer 1981!! 

But, seriously, I still think they still failed to adequately answer my question. (You'd think they would take someone who criticized them in the Washington Post a bit more seriously.) I get that not everyone has a fax machine, so maybe it is in fact a good policy to send everyone a response via snail mail to make sure that everyone does eventually get a response. However, if a doctor's office submits a request for prior authorization via fax, then clearly they have a fax machine. 

Faxing is obviously an authorized method of communication, and responding via fax is obviously possible for Aetna since they kept offering to do it for me. I don't see any valid explanation for receiving a fax and then automatically sending a reply via snail mail instead of fax. The only thing that does is increase the amount of time patients are waiting for much-needed meds, and patients don't need any more burdens than they already have. And requiring doctors to request a response via fax shouldn't be necessary either, and in any event clearly isn't working as I am certain my nurse would have requested such a response. 

In the end I think it is important to call insurance companies out - publicly - for policies that make things worse for patients. Policies should be created to take the burden off patients, to provide efficient service and effective care. And there isn't much we can do to change these policies because chronically ill patients are pretty much a captive audience. But we can at least ask questions!

From Enbrel to Orencia to Rituxan

I've owed an update on this blog for a while now. Unfortunately I don't have a lot of time or energy today - so this is going to be pretty quick. 

After CZL was born I was able to breastfeed him for three months until the pain got too bad. I reluctantly weaned him to go back on the methotrexate. The best my RA had ever been controlled had been on Enbrel and methotrexate, prior to getting married and having kids. I sort of naively assumed that going back on that combination of meds would have me feeling better quickly. Unfortunately, this was not the case and I have been struggling with a lot of joint pain and fatigue since CZL was born. Well, really since before CZL was born.

Somehow the combination of Enbrel and methotrexate just didn't seem to be as effective as it had been four years ago, so we decided to try a different biologic. After fighting through a fair amount of insurance red tape, I finally switched to Orencia. For eight weeks, I injected myself with Orencia, which turned out to be a real syringe, not an auto-injector like Enbrel had been. So that made me a little nervous at first, but in the end I think the injections actually ended up hurting less. I tried to wait as patiently as possible for things to improve. But sadly they just didn't.

So we decided to switch biologics again, this time to Rituxan. After jumping through even more red tape (because they literally never make it easy for patients) I finally had my first infusion of Rituxan yesterday. I sat at my doctor's office for six hours with an IV, so they could give me the medication slow enough to make sure I didn't have a bad reaction. I feel pretty worn out today but otherwise things went as well as they could have.

In two weeks I will have another infusion of Rituxan, and the second one should only take about four hours. After that - if it works - I won't need another infusion for at least six months! But it will take several weeks before we will be able to determine if this medication will work for me. So please keep send good wishes my way that it does! Because I'm not sure where we will go from here if it doesn't.

Sunday, March 29, 2015

Facing Forward: Tana

Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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: Tana
Location: Nashville, TN
Diagnosis/Diagnoses: Juvenile Rheumatoid Arthritis
Age at Diagnosis/Diagnoses: 16, symptoms started when I was 15

How are you currently treating your condition/conditions? 
Mainly recreational marijuana and DoTerra Essential Oils (best treatment I've ever had). I lost my insurance when I turned 18, so endless visits to specialists and medications don't fit in the young parents trying to raise a family budget at the moment. So weed and oils are the easiest and cheapest route for me. 

What are the biggest challenges you have faced since your diagnosis?
Wow, this is a tough one. The biggest challenge would be learning how to be a mom and wife who is also chronically ill. I've learned to embrace my good days because they are always the light the the end of the tunnel when I'm in a bad flare. 

What are your favorite tips and tricks for managing everyday tasks?
Keep Moving. I've started going to the gym and finding simple exercises on Instagram that have really helped my mobility. 

How do you manage to keep facing forward every day?
We don't have a choice so just roll with the punches. I never forget: tough times don't last, but tough people do! 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
That 8 years in, life is still pretty great. I am so thankful it hasn't progressed like we were first told. 

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