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

A “Miracle Cure” With Scientific Promise?

Hookworms to treat autoimmune diseases?! As disgusting as it sounds there's some method to this madness.

Sunday, March 22, 2015

Facing Forward: Debbie


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: Debbie
Location: Donnellson, Iowa
Diagnosis/Diagnoses: low thyroid, rheumatoid arthritis (RA), and osteoarthritis
Age at Diagnosis/Diagnoses: diagnosed May 26th 2013

How are you currently treating your conditions? 

I'm on methotrexate by shot 1 ml, folic acid, and levothyroxine. 

What are the biggest challenges you have faced since your diagnosis?

I had to quit my job, which was the hardest thing I've had to do. I was a CNA so I've taken care of people all my life. I tried to tell them I would get better, but I didn't know this wouldn't go away. I kept asking my doctor when this would get better. I had no clue. He finally told me this is a disease and it doesn't go away. When he gave me the medicine he gave me three shots and he said my levels were very high. I was rushed back to the hospital and they kept me overnight. I cannot take prednisone. I went into a depression and I was scared.
What are your favorite tips and tricks for managing everyday tasks?

I finally said to myself: "I have RA, IT DOESN'T HAVE ME!" So I learned to take things slow. That was very hard. I do things like I used to do, it just takes me a while and I take it slow. I do stretches. I try and walk 30 minutes every other day. I have seen what this does to people: the hands, the hammer toes, nodules. Until I found this post on Facebook I felt all alone. I wear Imak gloves for my hands and I wear supported shoes.

How do you manage to keep facing forward every day?

The way I keep going forward is walking away from a lot of stress. I thank God every day that I can get up. I take things a lot slower than I used to.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

I guess what I would have told myself is that I wish I had slowed down to take care of me. 

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

Saturday, March 21, 2015

Facing Forward: Kirsten

Name: Kirsten
Location: the frozen tundra known as Wisconsin
Diagnosis/Diagnoses: Systemic juvenile idiopathic arthritis (SJIA/Still's disease), asthma, fibromyalgia, psoriasis, depression, general anxiety disorder, post-traumatic stress disorder, and various joint issues
Age at Diagnosis/Diagnoses: 6, 5, 24, 21, 24, 24, 26, and 25/6 respectively

How are you currently treating your conditions? 

I'm currently taking a handful of vitamins due to some deficiencies along with several medications. I take Lyrica for my fibromyalgia pain in addition to etodolac (NSAID) and cimzia injections for my SJIA. Cimzia is the third TNF drug that I've been on and we will likely change up injections soon due to side effects and efficiency questions. I also take an antidepressant that, along with therapy, assists with my depression, anxiety, and PTSD. I have an inhaler for my asthma finally after having it get really bad with my recent bronchitis issues. I've had to do PT numerous times and recently had an injection into my iliopsoas bursa to try to resolve some bursitis and tendon issues.

I do a lot of meditation. Not only does it help with my mental health, but I'm also better able to handle my physical issues because of it. I have a number of allergies, so I have to be more careful about what I eat or expose myself to. I have a possible Raynaud's diagnosis as well, so I have to stay extra warm here in Wisconsin. It's not easy because it's Wisconsin, but also because I'm always cold!

What are the biggest challenges you have faced since your diagnosis?

I think the biggest issue has been slowing down. I've always been a bit of a busy body or workaholic. In high school I took honors and AP/IB classes and still did plays and other activities. There was a point in college when I was working three jobs and taking a full class load. When my SJIA hit really hard my senior year of college, I had to just push through it. It has stayed so active that I had to drop out of graduate school. I've always been the smart girl and to not have my master's degree is very hard. I'm inspired by my dad who got two master's degrees while working full time and having a busy family, and I hope one day that I'll be able to try school again. For right now, I really have to take it slow.

Another area I have to take it slow is in being active. For the third time, I've been pushed back to water exercises and essentially banned by my docs from doing much more than walking or hiking on land. I used to run upwards of 20 miles a day when I was in high school. Having to go so slowly is agonizing.

I've also had a really hard time coming to terms with the diagnoses other than SJIA that I now carry. I always thought I was fairly well off and that SJIA was my only big issue.

What are your favorite tips and tricks for managing everyday tasks?

Sometimes this is a hard question for me to answer. I've been sick so much of my life that I grew up with limitations and so naturally do a lot of things differently than others do. One of the things I do have a hard time with is cleaning. Try to wash dishes when they're warm because it's much easier to get them clean that way. Flip flops are great at pulling up hair and fur from your couch or your floor. Another thing I've discovered is that Dermablend makes a redness reducing cream that really covers up lupus and other rashes, so I've finally started wearing makeup because I know I can cover up my butterfly rash. They also make a full coverage makeup but it is really heavy and my pores don't handle it well.

How do you manage to keep facing forward every day?

With a lot of support. My husband is phenomenal at helping to get me motivated and taking care of me if I'm doing poorly. My sister, my family, and all the wonderful friends I have really keep me going on hard days - especially our three guinea pigs! They're my babies and, even if I'm having a really hard day, I will still do what I need to in order to take care of them and show them love. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?

The biggest thing I was scared about was ending up in a wheelchair. At the time I was diagnosed at age 6, research stated that SJIA kids were generally in a wheelchair by age 8. I was scared to death that it would be a sudden process - that I'd wake up on my 8th birthday magically unable to use my legs. When that didn't happen, the fear built up morning after morning. It got to be so much that I couldn't sleep at night because I was so afraid. I would stay up all night and sleep in the early morning instead. 

I would love to go back to that day and tell myself that the research was wrong, to comfort myself. I'd also love to tell myself how important getting treatment would be once I got that option, but that's another story.

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 

The Impact of RA on Self-Esteem

Physical changes can have a psychological impact, decreasing confidence/self-esteem. This article provides coping tips.

Tuesday, March 17, 2015

Washington Post Interview

A few months ago I did an interview with a Washington Post reporter about how difficult and expensive it can be to obtain my biologic medications. The article came out today!

Biologics are revolutionizing care for some diseases, but they are very costly

Monday, March 16, 2015

My Heart and The Mountain

Balancing RA-related limitations with the desire to live life to the fullest can be tricky, but sometimes the aftermath of an adventure is worth it.

Thursday, March 12, 2015

Facing Forward: Leslie

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: Leslie
Location: New York currently, but my heart and home will always be Michigan
Diagnoses: RA and lupus
Age at Diagnosis/Diagnoses: 22

How are you currently treating your conditions? 
I just started taking Imuran.  I am also on Quinacrine, along with some other medications.  I've previously been on Methotrexate, Humira, cellcept, tacrolimus, and hydroxychloroquine.  There might be others that I have forgotten, but those are all the ones I can think of.  Because I have both lupus and RA, that has made my diseases somewhat hard to treat.  For example, I had to go off of Humira because it caused my lupus to flare so bad that I was incapacitated for two weeks.  

I enjoy kickboxing.  I have had difficulty keeping up with a workout routine, so I just try and push myself to walk and move as much as I can.  I try to take the stairs when I can, although going down is much easier than going up.  

What are the biggest challenges you have faced since your diagnosis?
My biggest challenge has been finishing my PhD program.  I was diagnosed at the end of my first year of graduate school.  While I was determined to finish school, and I did, I also decided that I didn't want to go the academic route and wanted to help patients, specifically chronically ill students in college and graduate school. I discovered there was a real lack of health or support for chronically ill students in higher education.  So I decided to get a second master's degree in health advocacy from Sarah Lawrence College (that's why I moved to New York), which I will be finishing this May.  My most recent challenge has been working basically full-time, and trying to balance work and life with illness.  This will continue to be a challenge for me.  My boyfriend of three years, and I, just got our first place.  That's proving to be a challenge, too, both in illness- and non-illness-related ways, but we'll get through it.    

What are your favorite tips and tricks for managing everyday tasks?
Naps help me tremendously when I have the time and ability to do that.  I also always have ice packs on hand, in the freezer and ready to go. I am trying to learn to delegate and let other people do things that they can, and I might not have the time or energy to do, but that's a tough skill to learn.  My boyfriend (who is in the picture with me) sometime tries to pick up the slack, which can be helpful.  I worry less about the times when I am capable of doing the everyday things, and worry more about whose going to take care of them when I can't.  

Lately, I've been trying to experiment with makeup a little bit more.  There are some days when I simply don't have the energy, but when I do, it feels nice to look nice even if, inside, I don't feel that way.

How do you manage to keep facing forward every day?
I don't really have a choice.  I don't meant that in a negative way.  I have always been a go-getter, so nothing or nobody is going to stop me.  In fact, doubters only make me want to try harder.  I have come to have some amazing experiences as a result of being a chronic illness blogger - I started my blog a week after I was diagnosed - and I wouldn't change that for anything.  Knowing that there are people out there who want to hear my story and think it's important, that's truly what keeps me going.  I always knew I wanted to make a difference in the world, but I never quite knew how I was going to do it until I got sick.  

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would say, don't be so hard on yourself.  Bumps and bruises are a part of life.  You couldn't have done anything to prevent getting sick, but ultimately, getting sick led me to where I was supposed to be.  If someone would have told me that at the time, I would have thought they were nuts, but it's the truth.  

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

Wednesday, March 11, 2015

Facing Forward: Heather


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: Heather
Location: Rhode Island
Diagnosis: rheumatoid arthritis
Age at Diagnosis: 27

How are you currently treating your condition?
I currently take Enbrel on a weekly basis, as well as Plaquenil and Diclofenac (NSAID) twice a day. For the most part, they work really well at controlling my symptoms. Unfortunately, this winter has been really rough because it was my daughter's first year in daycare and she continuously brought home illnesses all winter long. Because of the immune suppression that comes along with taking Enbrel, I kept getting sick, and then I couldn't take my Enbrel for a week and I'd be in agonizing pain, then would take it and just turn around and get sick again. It has been a vicious cycle. 

What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I faced since being diagnosed was trying to get pregnant with RA - between the effects of the medications (not even methotrexate, but the diclofenac - did you know that taking NSAIDs of any kind can delay ovulation, even if you take 1 ibuprofen to manage a headache - yeah, me neither, and I was taking them twice a day...) and physically being able and willing to have sex with my husband, it was a trying time. Our first attempt took us nine months, and then ended in a miscarriage at 10 weeks. I was convinced it had something to do with the Enbrel so I stayed off of it while trying again and used prednisone to take the edge off for another five months until I got pregnant. I had a very easy pregnancy and birth, which resulted in a beautiful little girl, who is now almost 19 months old. It's been a rough ride raising her, and one thing that the RA has influenced was my decision not to have any more children. She will be my only child. 

What are your favorite tips and tricks for managing everyday tasks?
I've been really lucky that most everyday tasks I can manage while on my medication. If I can't manage something, like opening a jar, I ask my husband to help and he is obviously more than willing. I have learned to schedule my commute so that I end up being able park in a closer parking lot that doesn't involve walking way up a hill. And I always rest when I need to - sleep is my friend.

How do you manage to keep facing forward every day?
My daughter keeps me smiling all day everyday - she just has the brightest personality that is infectious. And my husband - he was with me before my diagnosis and has been there every step of the way through this journey. Plus he makes me laugh about having RA a lot. I also subscribe to the notion that everything happens for a reason - so I'll just sit back and see where it takes me.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
It's scary now, but you'll figure it out. You have a ton of people who love you and care for you and they will be there when you need them the most.

Do you have a blog you would like to share? 
Fighting The Invisible. I am the world's worst blogger, but there are a couple of posts there on my experiences.

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

International Buisness Times Interview

Another interview on biosimilars!

Tuesday, March 10, 2015

Facing Forward: Karla

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: Karla
Location: Cleveland, OH
Diagnosis: rheumatoid arthritis
Age at Diagnosis: Can't remember! 27? 28?

How are you currently treating your condition? 
My primary RA medication is Plaquenil and it has been very successful in keeping my symptoms in check. I supplement with Ibuprofen and heat compresses during flares. I also take a vitamin D supplement that somehow keeps my inflammation levels lower. When my rheumatologist first told me that my vitamin D levels were low and that I could improve my flares by getting more vitamin D, I laughed at her -- but it worked! Who knew?

What are the biggest challenges you have faced since your diagnosis?
As the parent of a special needs child (who has multiple invisible disabilities herself), my biggest challenge is in finding the energy to keep up with all the things my daughter needs on a day-to-day basis. There is no time for flares when you have a 7-year-old who needs assistance with everything -- from dressing herself to preparing a simple snack. Then there are therapies, educational support meetings, doctors and specialists and more. Some days, just the standard parenting run can wipe me out, but this kiddo takes it to a whole new level! 

Despite the struggles, my daughter gives me strength in a way that I never imagined. She has transformed me from a single individual to a "we." Meeting her needs and helping her to learn and grow has given me the strength to forget about the flares and go forward.

What are your favorite tips and tricks for managing everyday tasks?
My life after diagnosis has been all about pacing. I'm sure that most of you have heard of the "spoon theory" by now, but if you haven't it's all about the amount of energy you have within you to get through your day. On good days, you have more energy (or "spoons"). On bad days, you run out of spoons -- fast. 

Over the years, I have become very conscious of the number of spoons I have left. I strive for efficiency over perfection. I do my best not to run out of spoons if I can -- and when I do, I try not to push it overboard (sometimes, you HAVE to, but I try to avoid that as much as possible).

How do you manage to keep facing forward every day? 
I am extremely lucky and grateful to have a supportive husband. He is my stash of extra spoons in waiting and my true soul mate. I've also got an amazing little girl to keep me on my toes: if I turn around to look behind me for even one minute, who KNOWS what she'll be into!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Things are going to change... no doubt. But with each thing you set aside, there will be something new. For example, I found that crochet helps me to keep my hands strong and flexible. I began messing around with dolls after we adopted my daughter and now design dolls and patterns for sale (The Itsy Bitsy Spider Crochet). Would I love to be climbing a mountain with my husband? You betcha. But that's not reasonable for me given my particular diagnosis. Making dolls that delight my daughter and others around the world is something I probably would not have discovered without RA. After all, it would be pretty inconvenient to crochet on the top of a mountain!

Do you have a blog you would like to share? 
I don't have a blog, but I would like to share a resource for parents in the Cleveland area who might come across your blog. Connecting for Kids is a nonprofit service on Cleveland's west side that provides education and support for parents of children who struggle. If you live in the area and you're concerned about a child (with or without an invisible disability), please check CFK out!  

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

Denver Business Journal

The Denver Business Journal quoted some of my testimony in it's article about biosimilars:

Cheaper generic biotech drugs loom as 'biosimilars' law advances in Colorado Legislature 

Monday, March 9, 2015

Facing Forward: Stefanie

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: Stefanie
Location: Massachusetts
Diagnoses: Juvenile Rheumatoid Arthritis - Pauciarticular Onset as well as Uveitis and Glaucoma
Age at Diagnoses: 13 Months Old

How are you currently treating your conditions? 
I am currently on Enbrel (for the second time) and 3 different types of eye drops to control my Uveitis and Glaucoma. However when I was initially diagnosed the only medical option was aspirin. Growing up I tried many different medications (from gold injections to Humira) and everything in between. Fortunately there are so many better treatment options available now! I have have also been trying to eat healthier and I am exploring cutting my dairy intake, but I am not sure if that is helping thus far. I always try to stay as active as possible, whether it's skiing on the weekends, yoga, or just taking the dog out on a walk!

What are the biggest challenges you have faced since your diagnosis?
As a child there were not many treatment options and, as a result, I struggled with walking and was frequently achy and sore. I tried many different childhood activities such as hippotherapy, karate, and adaptive skiing as exercise. I have always struggled with controlling my Uveitis and the accompanying Glaucoma, and unfortunately I believe this will be a constant challenge as it is very difficult to treat. The stress and transition to college was also a huge challenge for me. Throughout this period I struggled with frequent flares, multiple medication changes, and three surgeries. I know there will be other challenging periods in my future, but I am ready for each obstacle!

What are your favorite tips and tricks for managing everyday tasks?
I love baths. Just soaking in any tub, it doesn't matter how big or small it is, helps me physically and mentally. If I had the time to do this every night I would! Also massaging icy hot into sore knees. And wine ;-)

How do you manage to keep facing forward every day?
There is so much in life to be fortunate for. My experiences as a pediatric occupational therapist and volunteer work with adaptive skiing has taught me about how truly fortunate I am. Although sometimes having Arthritis can suck (and it's ok to say that!) I feel lucky to have such an amazing husband, close family, loyal friends, and the cutest puppy ever!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
As a result of being diagnosed so young, Arthritis and my life are one and the same. There is no "pre" versus "post" diagnosis life. I consider this a blessing. I am who I am and Arthritis has not changed that. In fact having Arthritis has led me to choose a career in healthcare, meet amazing people volunteering (including my husband), and live a fulfilling life. So what I would say to my 13 month old self is, "Buckle up, it's going to be one hell of a ride, but it's going to be worth it."

Do you have a blog you would like to share? 
Yes! I have just started a blog called All Grown Up with JRA. It will share advice, resources, and the challenges of being a young adult with JRA. I would love any feedback or comments!

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

Sunday, March 8, 2015

Facing Forward: Mariah

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: Mariah           
Location: Louisville, Colorado
Diagnoses: rheumatoid arthritis (RA); Hashimoto’s thyroiditis
Age at Diagnoses: RA at age 25; Hashimoto’s at age 5

How are you currently treating your conditions?
I’ve been taking replacement thyroid hormones for my Hashimoto’s since I was in kindergarten. For my RA I take methotrexate (when I am not pregnant or planning to get pregnant). I have also tried Remicade (which never really worked for me) and Enbrel (which worked very well for me for years.) Unfortunately, the Enbrel recently stopped being as effective, so I am currently in the process of trying Orencia. While I wait for the Orencia to (hopefully!) kick in, I've been relying a lot on prednisone and hydrocodone - which I really don't like to do. My rheumatologist and I are working together to find a combination of medications that I am happy with, but it will take some more time and patience.

I get most of my exercise chasing my two boys around (ages 2.5 years and 7 months), but I also try to get to the pool once or twice a week. Though I know many people do see improvement in their symptoms from making changes to their diets, this has not ever worked for me (even though I tried being gluten-free for 6 months). But I do try to eat as healthy as possible! I also take a couple supplements: folic acid (to help with methotrexate nausea) and a fish/flax omega-3 (a natural anti-inflammatory).

What are the biggest challenges you have faced since your diagnosis?
Getting my symptoms well enough under control to graduate from law/graduate school was certainly a challenge, but I think the very biggest challenge I have faced in my life with RA has been the decision to have children. I dealt with RA that was not fully treated for more than four years to safely bring our two little boys into the world - and I felt beyond alone in the world while I did it. There were very few supportive resources out there for women with autoimmune issues who wanted to get pregnant or breastfeed. While I offer understanding and support to everyone living with a chronic illness, I have a very special place in my heart for the mamas, mamas-to-be, and those who want to become mamas - and I have been fighting hard ever since to support these brave women! 

What are your favorite tips and tricks for managing everyday tasks?
My biggest everyday challenge is usually getting dinner on the table - because cooking dinner generally happens at the end of the day when the kids are cranky and I am hurting and out of energy. I rely a lot on big batch cooking, where I prepare a lot of meals on days when I am feeling up for it and then I have healthy meals ready for my family on the days when I don't have energy at the end of the day. Some of my favorite types of big batch meals to freeze include lasagna, meatloaf, and crockpot meals!

How do you manage to keep facing forward every day?
My boys - all three of them! My husband has been holding my hand every step of the way since the very first pain in my toes, well over six years ago. I never could have gotten to where I am today without his love and support. Our two-year-old is curious and super silly and always has something to say that makes me smile. He is getting old enough to start understanding that sometimes mama doesn't feel well, and he's always ready to offer a hug! And our seven-month-old is the world's happiest baby, full of smiles and giggles (and slobber!) Sometimes I just hold him and breathe in his sweet baby smell and it refreshes my mind. Also our loving dog River, whose snuggles at the end of every day help me relax. Loving my family is the reason I keep moving forward, not matter how I feel physically.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
This diagnosis will absolutely change you - but not for the worse.

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

Saturday, March 7, 2015

How To Try A New Medication In 100 Easy Steps! (Because If We Don’t Laugh, We’ll Cry)

Ready to try a new medication? Just follow these 100 easy steps and you’ll be giving it a try it in no time! (Since this is only a slight exaggeration, I hope we can all laugh about it together!)