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.  

Friday, April 8, 2016

From The Infusion Chair

I’m not sure exactly how it happened, but this scenario, which would likely seem foreign or even scary to most people, feels quite ordinary to me now.

Facing Forward: Kristin

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: Kristin
Location: Grand Rapids, Michigan
Diagnosis: Ankylosing Spondylitis, Fibromyalgia, Chronic Fatigue Syndrome, Depression, Rhinitis, Chronic Costochondritis, Anxiety
Age at Diagnosis: 24

How are you currently treating your condition?
Although my treatments have changed and ebbed/flowed over the past few years, I'm currently on a routine that is the best one I've found so far. That's not to say I'm completely satisfied with it - I still have a long way to go to get as managed as I would like to be. I am currently on the following medications: Remicade (infusion every 6 weeks), Cymbalta, Methotrexate (injection once per week), Trazodone, Flexeril, and Folic Acid. I also try to include vitamins in my daily routine, especially since the medications wipe out my immune system even further. I'll be competently honest, I don't do as well with the diet and exercise as I need to be doing. However, when I am in a regular routine with those two things, I try to walk, bike, swim, and/or do yoga weekly, and i also try to eat the most natural and unprocessed foods available while maintaining a balanced diet. Another huge benefit to my treatment is regular deep tissue massages. Although I can't afford to go as often as would be 100% beneficial, I try to fit in a massage once per month.
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge is the fatigue and lack of energy. Also the side effects of medications can be tough. Most days it can be all I can do to get through the day and go back to bed. However, I work 50-60 hours a week, and have a very busy freelance and advocacy schedule on top of that. I can make it through, but it's exhausting and eventually I do experience burnout on a regular basis throughout the year. 

What are your favorite tips and tricks for managing everyday tasks?
My biggest tip? Sleep. Sleep enough and then sleep some more. I am useless when I don't get enough sleep, and even then it is still a struggle sometimes. Another tip is to be kind to yourself. Your body is working overtime to fight your diseases, so be understanding of that and cut yourself a break. 


How do you manage to keep facing forward every day?
My biggest motivator is my career and sharing my story. I love my job - my illnesses don't always love it, and my work/life balance could use some adjusting, but I feel the best when I am able to put my digital communications and marketing skills to the test. In the same breath, my health advocacy has become my calling. The work that I do to share my story and provide 100% transparency into my journey is rewarding in so many ways. The biggest reward is to hopefully help one other person feel less alone in their chronic illness journey.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would tell myself that the world is not ending. I would tell myself that not only will this not break you, but it will make you the strongest person you know. On diagnosis day I would want to tell myself that this experience, this whirlwind will introduce you to the strongest and most supportive tribe of people you'll ever meet, and you will find your calling.

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.  

Saturday, April 2, 2016

Honesty and Telling The Whole Story

Yesterday, I found this photographic gem on my husband's computer. He took it the day he came home from work to find me hiding on the island (where no one could touch me) and eating straight out of a gallon of ice cream while our children ran around (obviously sans pants) destroying everything they came into contact with (even though the little one looks like some kind of golden angel baby in this picture). 

Yesterday was a similarly challenging and frustrating day with the boys, and I've been in a fair amount of pain as my Rituxan infusion from last week hasn't kicked in yet. So I was really glad to find this photo because it helped me figure out how to laugh about my day instead of crying like I wanted to. I thought other people - especially other moms - might be able to relate to the extreme honesty in this picture, so I shared it on my Facebook page and in Mamas Facing Forward. But I have to admit that I wasn't quite prepared for the huge response the photo got. So many people laughed and said they could completely understand the feeling conveyed by this picture.

The experience got me thinking about the value of of honesty and telling the whole story - which is a topic I have been thinking about a lot lately in relation to this blog. For almost eight years now (wait...really?? Yes! Almost eight!) this blog has been a space where I have honestly shared my journey through life, marriage, and motherhood after being diagnosed with rheumatoid arthritis in the middle of law school. But I'm sure my readers have noticed - especially those of you who have been reading this blog for a long while - that recently I haven't been doing a lot of personal writing directly on this blog. Yes, I've been sharing links to honest stories that have been published elsewhere, but I'm also sharing other information that I think might be useful to those living with rheumatoid arthritis. I've even opened up my advocacy efforts to include the chronic illness community as a whole. It's been quite some time since I sat down and just wrote a blog post to help me work through my own feelings, the way I used to. There's a couple of reasons for this change - and, based on my recent experiences with the benefits of honesty, I've decided I want to share them here. 

The first reason is probably obvious: a financial one. Everyone living with a chronic illness knows that it comes with a huge financial burden. The biologic I currently take, Ritxuan, literally costs $10,000 per infusion, and we all know that insurance doesn't always provide the best coverage despite the necessity of these medications in our lives. And though I am very proud that I managed to graduate law/grad school despite my diagnosis, that accomplishment also comes with a crushing amount of student loan debt. Debt that I have been unable to make a dent in since I haven't been able to obtain the type of job I thought I would have due to my health. Also? Preschool is so expensive. We only send our kids a couple of days a week and it still literally costs almost as much as our mortgage. So, since there are a couple of wonderful and supportive websites out there willing to pay me to share my stories, it's hard to avoid the desire to save everything worth writing about for a paid gig. Because at least that way we all benefit - you still get to read my stories, and I get to feed my kids and pay for my meds!

But there's actually another reason, too. When I first started writing this blog after my diagnosis, I wrote only for myself. I don't think anyone else even knew it existed, except maybe APL. But then I slowly started sharing it with friends and family, to help them understand what I was going through and spare myself the need to constantly repeat my story to everyone. From there this blog has grown to allow me to love and support people I've never even met - but who I share an intimate bond with because they also understand the reality of living with a chronic illness. I've been so honored to get countless emails from people telling me how much my blog has helped them get through difficult times. It makes me happier than I can say to be turning my negative experiences into something positive, but I have to admit that it has also made me feel a bit wary. I feel responsible for the stories I tell and the impact they may have on others who are struggling, if that makes sense. So, instead of writing my emotional stories in the moment like I used to, that feeling of responsibility has created the habit of taking some time to process my feelings and experiences before writing about them. I try to give myself a chance to see the bright side of the situation, the lessons to be learned, and the progress to be made - so I can share that with my readers as well.

Because the honest truth is that this shit is hard. Living with a chronic illness is hard. Raising kids is hard. And sometimes doing them both at the same time feels downright impossible. To be honest, sometimes when I try to face forward and look into my future, all I can see is a lifetime of doubt and pain and exhaustion and what feels like failure. But you know what? I've come to the realization that admitting these overwhelmingly negative feelings exist is often the first step in figuring out how to move past them. 

I'm reminded of why I chose the title of my blog in the first place. From This Point. Forward. See that first period? The one after the word "point"? I put it there for a reason. It represents a point in time from which you can decide to move forward. But it isn't just one point in time. It's this point in time. This one right here. You don't have to face forward every second of every day. The important part is that when you struggle, you can always pick a new point. This one. And, from this point, you figure out how to face forward.

Friday, April 1, 2016

Facing Forward: Donna

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: Donna
Location: Scotland
Diagnosis: Fibromyalgia
Age at Diagnosis: 26

How are you currently treating your condition?
I have been through quite a few treatment options before finally finding what works for me. I now take a multi-faceted approach to treating fibromyalgia. A big part of that for me has been following the Vital Plan Restore Program, which is an herbal therapy based protocol designed to help create a healing environment in the body. Part of the program also includes diet changes and I have found all of this to be very helpful to me.

I try to keep stress to a minimum and practice calmness everyday, whether that is deep breathing exercise or meditation. I listen to my body, say no if I feel doing something is too much for me, and ask for help when I need to.

I have also worked hard to restore my sleep, which I think is a must if you want to improve your fibromyalgia. It took a long time but I definitely feel the benefits from getting better sleep.
 
What are the biggest challenges you have faced since your diagnosis?
I used to be very active but - with hindsight - I now see that I was pushing beyond my limitations most days. This unfortunately resulted in me physically crashing in 2014. I literally went from working one day to being unable to get out of bed the next. It's been a slow and difficult process to build myself back up again, and I've had to give up a lot along the way, but I'm getting there.

What are your favorite tips and tricks for managing everyday tasks?
Using heat, regardless of whether I feel I need to or not. I love my heat pad and I use it every day. It helps to keep my muscles relaxed and it is great for reducing pain. I also take a bath every night too for the same reason.

I also use pre-emptive rest and schedule rest into every day, which definitely helps. And I pace all of my activities. I actually thrive on routine and it's been one way I've managed to get my symptoms under control. It makes it easier to know what my baseline is and this stops me from overdoing it.

How do you manage to keep facing forward every day?
I try to focus on the present day and take things one day at a time. Each day I simply do what I think will help me feel as well as possible. I also hold on to hope. Although I can have my difficult days, I trust that things will get better for me. I tell myself I am better than I was last year and that I can continue to improve. I also have amazing support from loved ones, and they pick me up when I need it.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Don't push through. Live within your limitations, don't fight them. I definitely buried my head in the sand; I didn't want to admit I was sick and that things needed to change when I was diagnosed.

Do you have a blog you would like to share?
Yes I do. I blog at February Stars, a lifestyle and wellness blog where I share tips and information relating to living as well as possible with chronic illness. This is intertwined with stories from my life and posts related to healthy living.

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