Friday, July 29, 2016

Facing Forward: Amy

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: Amy
Location: Post Falls, Idaho USA
Diagnosis: POTS (postural orthostatic tachycardia syndrome) a form of dysautonomia
Age at Diagnosis: 29

How are you currently treating your condition?
Combination of medication to include Metoprolol 50 mg per day and Midodrine 15 mg per day, as well as additional medications for other conditions. I'm doing physical therapy twice a week working on as much cardio as I can do without my heart rate getting too high, as well as muscular strengthening and stabilization. I also try to do recumbent biking at home as often as I can tolerate it. I drink water like it's going out of style, usually over 140 ounces a day. I drink Gatorade and Powerade, as well as increasing my overall salt intake on my food. I will be starting salt tablets as well soon and an abdominal binder. I also use oxygen to recover after a faint and when my O2 sats are particularly low. I have a wheelchair that comes with me anywhere that requires a lot of walking or no chair is available.
 
What are the biggest challenges you have faced since your diagnosis?
It has been relatively difficult for me to accept that I'm 29 and use both oxygen and a wheelchair on occasion. My self confidence really took a hit at the beginning and gaining weight didn't help at all. If you would have asked me a year ago how I release stress I would have told you either sitting in my sauna, taking a hot bath, working out, or having an alcoholic beverage. Basically all of these options have been taken away from me due to my health, and that has caused me to have to majorly shift my life around.

Besides those issues, I think truly the most difficult part has been giving up my work. I was a police dispatcher for the state police. My husband is a police officer for another agency. We have always been a law enforcement family. Our entire relationship has been balancing two different shift work schedules. I miss my law enforcement family and the adrenaline rush terribly. I feel like a law enforcement 'wannabe' now. I hate that I never worked graveyard anymore at the same time as my husband, meaning we would get to sleep at the same time during the day. Even though I'm on disability so technically I can sleep whenever, all of my doctor and physical therapy appointments are during the day, which causes me to mostly sleep at night.

What are your favorite tips and tricks for managing everyday tasks?
  1. Electronic scheduling and list making. There was a time in my life where I could remember the six or seven things I needed to get from the store without a list. I now write down every little thing I need and I try to write it out in the order I come upon it in the store to avoid backtracking as much as possible. I used to be able to remember specific dates and appointments without needing much of a calendar. Those days are gone. My husband and I share a google calendar now with every important appointment and task on it (to include even things like 'garbage goes out today'). Whenever I don't write something down immediately, I regret it later.
  2. I now have issues with my body holding heavy things, reaching above my head, and bending down. I'm always looking for easier ways to do everyday tasks. Instead of filling up the coffee carafe with water then holding it to pour it in, I've come up with this system. It's definitely worth moving the coffee pot closer to the sink. I used to keep the dog water in the basement in the laundry room, but I had to eliminate stairs as much as possible. Now I keep it in the kitchen right by the sink so I can do this. I still have to lift it up to wash it when needed, but when it just needs to be filled up I can do this instead.
  3. I keep water bottles all over my house in case I am very dizzy or weak somewhere, such as couch or bed, and unable to get to the kitchen.
  4. I use much cooler water when showering now and sit down on the shower bench a lot. We also installed a shower doorbell. It's just a waterproof doorbell we ordered from Amazon that requires no wiring. It's down low in case I fall or start to feel really dizzy I can call my husband by pushing the button. 
How do you manage to keep facing forward every day?
I do my very best to always stay focusing on the positive. I know that I am more tolerable when I am not whining or taking the 'woe is me' route. On that note, I don't mean to sound cliche and against all the rules of chronic illness, but there really is always someone who has it worse and it helps me to remember to be thankful for the many things we sometimes take for granted. You know I might have a really bad pain day or be very sick, but hey I'm living like royalty because I have indoor plumbing and we can afford the 'good coffee creamer.' It's the little things. I try to focus more and more on simple joys like a cup of coffee, watching a hummingbird, watching a great hockey game, or a good book. I force myself to make plans every few days at least because I know contact is important. I try to find ways I can bless someone else along the way and take the focus off of me, whether that is putting together a care basket or donating to someone in need.

I am continually trying new things as I'm having to reduce or eliminate completely other things I used to enjoy. My husband and I play cribbage now and darts (which can be played seated). I have taken up acrylic painting and wood burning. Yes, I could be sad that I don't do aerial silks or Krav Maga anymore, but I choose to put my energy towards something new.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
"It's all gonna work out. This will be life changing, but not life ending."

Do you have a blog you would like to share?
I run a blog devoted to deliberately finding the smiles in life. Follow along at: POTS: Finding Smiles in the Trials. You should always be able to find something funny, encouraging, inspiring, or helpful for whatever path you are own. The blog includes quick and easy recipes, crafts, little love stories and tips about romance with chronic illness, helpful tips, and many funny stories and pictures!

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

Thursday, July 28, 2016

Pregnancy and Parenting with Arthritis Study by the Canadian Arthritis Patient Alliance

Though I had a lot of friends who were new mothers also, none of them could relate to the specific challenges I was facing because of my RA.

Juvenile Arthritis Camp

After speaking about Relationships & Intimacy at the Arthritis Foundation's Juvenile Arthritis Conference West, I left Arizona at 4:30am the following morning. I flew back to Denver and drove straight to Estes Park, where I spent an amazing week as a counselor at Juvenile Arthritis Camp. 

I had the opportunity to volunteer at JA Camp once before, back in 2011, but hadn't been able to return again until this year due to having my own kids to handle! (In 2012 I had a seven week old baby, in 2013 I had a one year old, in 2014 I was about 9 months pregnant with my second baby - and my RA was flaring badly to boot, and in 2015 I had two crazy toddlers!) This year, since my boys were in camp themselves most of the week, I was finally able to return - and I'm really glad I did!

As always, camp was crazy and full of activities! We rode the aerial tram to the top of the mountain, where we climbed on rocks and chased chipmunks. We did arts and crafts. We went horseback riding. We went swimming every day. We went boating. Archery. Rock climbing. Night hiking. Games. Songs. On town night the kids got to ride bumper boats and go karts. The junior counselors got to go zip lining. Even though these kids are living with arthritis, they never cease to amaze me with their energy and enthusiasm! 

We also had a "talk with the doc" session, where the campers got to talk to a pediatric rheumatologist and nurse (both of whom were also amazing counselors all week!), adults living with arthritis (me and a few other counselors), and each other about life with arthritis. We had an amazing "celebrities" session too, where junior counselors shared their perspective on school, sports, injuries, bullying, depression, fundraising, and advocacy - they were all so well spoken!

This year I roomed with the camp nurse, which meant that our room was also the infirmary. We had a peg board in our room with 56 gallon sized Ziploc bags hanging on it - and each bag contained multiple bottles and packets of pills and vitamins. Our fridge was full of syringes. It was a visual reminder of the challenges our campers face every day. And maybe it's because my kids are so much younger and still need a lot of hands on care, but I was also really surprised to see how self-sufficient most of these kids were when it came to being responsible for their own medication. With a reminder that it was time for meds, most of them were able to find their own bag and knew how much medication to take and when. Some gave even gave their own injections. And, when med time was over, they all just went back to being crazy kids!

I really enjoyed my time at camp this year and hope I will be able to return again next year!! 







Juvenile Arthritis Conference West - Relationships & Intimacy

Those of you who follow me on Facebook, Twitter, and/or Instagram know that I had a crazy busy week last week - I wanted to share some highlights!

Recently I've been supporting my amazing friend Kirsten as she works to develop resources and support for an issue I have long argued needs to be discussed more - the impact of arthritis on our sex lives. Kirsten has been hosting the Chronic Sex Twitter Chat (every Thursday at 7pm ET) and she has gathered amazing resources on the Chronic Sex website. Because of this great work, Kirsten was asked to moderate a session on relationships and intimacy for the young adults at the Arthritis Foundation's Juvenile Arthritis Conference. I was lucky enough to be asked to join the panel as well - along with Jeremy Forsyth, who not only brought a male perspective but also the perspective a partner/caregiver as he and his wife both live with chronic illnesses.

Rather than being a lecture or talk, the session was more of a collaborative discussion with the young adults who attended the conference and are living with arthritis themselves. We talked about self esteem, dating, relationships, and, of course, sex. We worked hard to provide these young adults with a safe space to ask any questions they might have and to share their worries and concerns, either out loud or via written anonymous index cards. As the panel, we admitted that we don't have all the answers to these questions - and that we still struggle with many of these issues in our own marriages. But we did our best to share what we've learned from our own experiences and emphasize that it is natural to struggle with these issues - but that you don't have to struggle alone. We shared resources for information and support, as well as tips for talking to their doctors and partners. 

Though everyone in the room was over age 18, I will admit that they seemed quite young to me - thought perhaps that comes with the territory of being a mom myself! Despite their youth, I truly hope that their parents were grateful (or at least ok with) our session. My own kids are still a bit young to talk directly about sex (so far we've only discussed that private parts are private, and parents and doctors are the only ones allowed to touch besides themselves), but when my kids are older I hope they will feel comfortable asking any questions they have. But, if they aren't comfortable asking me or their dad, I truly hope that they will also have a safe resource to turn to to learn about healthy intimate relationships. 

I'm really thrilled that the Arthritis Foundation was willing to embrace this topic - which will ultimately play a huge role in quality of life these young adults living with arthritis. And I am very excited to participate in this session again in a few weeks - at the Juvenile Arthritis Conference East in Philadelphia! 



Wednesday, July 27, 2016

Babywearing for Parents with RA

After more than 4 years of wearing both of my boys, I honestly can’t imagine motherhood without the benefits of babywearing.

RiverRide 100

As you all know, this year I'm planning to ride in the Arthritis Foundation's California Coast Classic - a 525 bike ride from San Francisco to Los Angeles that will take place in September. I'm honestly a little bit overwhelmed by the scale of this goal, but I am excited to give it my best try! If you are feeling inspired - and yet overwhelmed! - by my crazy commitment, I just found out about another ride in support of the Arthritis Foundation that might interest you.

RiverRide 100 began in 2013, when a group of nine bikers traveled from Pittsburgh to Washington D.C. over five days. Jeff Krakoff, one of the original bike riders and one of the facilitators of the event, has been personally living with rheumatoid arthritis for years. In 2014 and 2015, the event evolved from five days into a one-day 100-mile bike ride.

This year riders can pledge to ride 50, 75, or 100 miles in support of the Arthritis Foundation. They can complete their mileage in one day or throughout the entire month of August. Participants can take part from anywhere in the country, and each will be able to create their own fundraising webpage or team page through the RiverRide 100 CrowdRise site. The amount of fundraising, mileage, and pace of the ride is completely up to you!

This bike ride challenge is for anyone, anywhere, with any level of bike riding ability. If you are interested, click here to learn more!



Friday, July 22, 2016

Facing Forward: AmandaRae

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: AmandaRae
Location: Idaho, US
Diagnosis: Rheumatoid Arthritis and overlay of Lupus
Age at Diagnosis: RA at 19 years old & Lupus overlay at 30 years old

How are you currently treating your condition?
I currently am only on prednisone 10mg for the RA and Plaquenil for the Lupus. I was on Remicade infusions but when I was diagnosed with Lupus I had to be taken off Remicade because it causes Lupus to flare. I also try to cook with as many anti-inflammatory spices and foods as possible (cinnamon, black pepper, turmeric) and limit sugar, salt, tomatoes, and fried foods. I stay active whether it's going to the gym, doing my at home workouts, or going on family walks and hikes. For down time I soak in Epsom salt baths and listen to my body for when I just need to lay down and relax for a bit.
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenges I have been faced with since my diagnosis is the horrible fatigue. I work full-time 8-5, I'm a mom of two active boys, and I'm a wife. I feel so guilty if I am too tired to play with my kids and I really try to push through it. I have been working really hard on learning self-care and the importance of it for myself and my family. I am learning to manage it a lot better by organizing my day and caring for myself. You cannot take care of your family if you are depleted.

What are your favorite tips and tricks for managing everyday tasks?
My favorite tip for managing everyday tasks is to delegate! My oldest son is now 11 which mean he can help with chores (and it's good for him to learn how to do household chores). For example, he can unload and load the dishwasher, take out garbage, vacuum, and clean his room. My 3 year old can feed and water the dogs and keep his room cleaned up. I am a very hands on mom and I tend to think that I have to do everything for my kids, but I am slowly learning that is not the best thing - not only for myself but also for my boys. It's good to teach your children responsibility and skills.

How do you manage to keep facing forward every day?
I stay positive, I stay strong willed, and I stay determined! I know the importance of self-care and I know the importance of not feeling guilty for times that I need to rest. I look at each day as a new day and I embrace my "imperfections" (RA) and I use them as a stepping stone. Life is Beautiful!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would tell my past self that life is about creating your story and that this diagnosis is a beautiful chapter just waiting to be used to encourage and inspire others why may be having troubles accepting or embracing their flaws and diagnosis. I would tell myself to use it as a stepping stone now...it took me 11 years to realize this.

Do you have a blog you would like to share?
I have a facebook page called I'MPERFECTion. It's about me...a mom and wife living with RA, embracing her flaws, betting herself, and having fun on her way to becoming I'MPERFECTION.

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

Friday, July 15, 2016

Facing Forward: Kristen

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: Kristen
Location: Pittsburgh, PA
Diagnosis: Ankoloysing Spondylitis, Migraines, GERD and Chronic Dry Eye
Age at Diagnosis: AS at 31 (4 months after my second baby was born)

How are you currently treating your condition?
I'm still really struggling with treatment. I tried Enbrel first. Started Aug 2015 and just stopped a month ago. I was about 80% better but it wasn't covering my flares, so I was perpetually on prednisone. I'm two doses into Humira and quite frankly I'm doubtful it's going to work. I'm only at about 20% and back on prednisone.
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I have found so far is getting people to understand I don't feel well. My swollen joints don't look very swollen to everyone else and I'm good at hiding pain after years and years of migraine that weren't controlled very well. You get into this trap where you almost act worst than you feel just so people will believe you. It's messed up and I try not to fall into it because it doesn't matter. I know how I feel and I know that it doesn't have to define me. It's just hard some days.

What are your favorite tips and tricks for managing everyday tasks?
I use a rubber grippy thing to open jars (hands). I have a heating pad next to my bed and under my desk at work (hips, lower back). I try to take deep breaths often (to prevent rib fusion and ease the ache in my sternum). I sleep with a huge preggo pillow to try to pad what hurts the most trying to sleep. I don't lay on the floor anymore but invite the kids up to the couch with me instead. We Netflix more than I'd like when I need to nap. I don't hesitate to ask for prednisone when I can't keep up.

How do you manage to keep facing forward every day?
I try to make a list in my head of everything I'm grateful for when it's hard. Like that it's not cancer, I'm not dying, running water, HOT water, comfy bed, etc. There are so many good things in my life. I just have to see them.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Be patient. It won't be as bad as you think. Push when you know the answer is not right - my first Rheum said my MRI was fine, my second actually looked at the scans and started me on a biologic immediately.

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

Wednesday, July 13, 2016

New Study Shows Vagus Nerve Stimulation May Reduce RA Symptoms

A new study has led to promising potential for treating RA through electrical stimulation of the vagus nerve.

Friday, July 8, 2016

How To Handle Parenting With Rheumatoid Arthritis

I'm pleased to announce my first guest post for another great RA support site: NewLifeOutlook|RA!

From an RA perspective, I felt so alone when I started my journey to pregnancy and parenthood. Since then I've worked hard to try to provide and encourage more resources on this topic - so that future parents-to-be with RA will feel less alone than I did! 

So I'm always pleased to be asked to write about a topic that is near and dear to my heart: How To Handle Parenting With Rheumatoid Arthritis.

Facing Forward: Sue

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: Sue
Location: Illinois
Diagnosis: Type 2 diabetes
Age at Diagnosis: 37 yrs (about two weeks before turning 38)

How are you currently treating your condition?
Diet and exercise.
 
What are the biggest challenges you have faced since your diagnosis?
I often get frustrated that I can't eat like everyone else. Other people can sit down with a big bowl of popcorn and watch a movie or go out for ice cream without having to worry how many carbs are in that treat. Balancing my desire for various foods and the need to keep my glucose under control is hard. Type 2 diabetes also has a stigma of being caused by lifestyle. My lifestyle is no different than anyone else. Often I get upset with people who judge and blame people with Type 2 for our diagnosis, making assumptions that aren't true.

What are your favorite tips and tricks for managing everyday tasks?
Planning out my meal beforehand helps a lot if I make sure I'll have enough low carb foods that taste good and satisfy my hunger.

How do you manage to keep facing forward every day?
Moderation not deprivation. I allow myself lazy days and treats. If I'm too strict on myself, I get down about life or find myself binge eating.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Find your tribe now. Don't wait. Find that group that will lift you up and support you when you need it. Find those people who really know what you're going through because they're going through it too.

Do you have a blog you would like to share?
My blog is Diabetes Ramblings.

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

Tuesday, July 5, 2016

My 8th RA Annivesary

I can hardly believe that it's already time to write my next RA anniversary post! It has now been eight years since I was diagnosed with RA in June of 2008. And my how my life has changed since then!!

My older son just turned four at the end of May, and it's hard to believe but the "little" one will be two in just a few weeks! My boys are rambunctious and completely full of life - and they take up most of my spoons every single day! I am still treating my RA with methotrexate and Rituxan, though I have had to reduce the time between my Rituxan infusions from six to five months. Hopefully this will continue to be a good method of treatment for me for the foreseeable future.

I've been working hard this year to expand my advocacy and awareness efforts. In addition to the writing I've been doing for RheumatoidArthritis.net (and various other Health Union sites), I also did some guest posts for Mango Health and Scary Mommy this year. I participated in several Joint Decisions events, including a webchat on Becoming Your Own Health Advocate, the second Empowerment Summit, a live web chat with host Matt Iseman, and a Facebook chat about Raising a Family While Living With RA. I also attended the American College of Rheumatology Annual Meeting for the second time, as well as summits and advisory boards with Pfizer, Janssen, and Lilly. For the second time I volunteered as support staff for the Arthritis Foundation's California Coast Classic (while APL rode for the third time). I was also exited to return to the second HealtheVoices conference, and I've been thrilled to support the amazing Kirsten Schultz as she develops the Chronic Sex chat and website.

Like last year, I've continued to be pretty active in the media. I was interviewed by the New York Times, HealthCentral, HealthMonitor's Guide to RA, the Colorado Statesman, the Daily Camera, and I also participated HealthCentral's Managing Your RA: Big Picture photo shoot. The Facing Forward series on this blog has been expanded to include not just people living with arthritis but also other invisible chronic illnesses - and I've been learning a lot from reading all the submissions! My Facebook support group for moms with chronic illnesses, Mamas Facing Forward, is growing by the day and turning out to be a wonderful community of optimism and support.

This coming year is likely to be pretty crazy, as I want to continue my writing and advocacy efforts as much as possible. In addition to focusing on supporting moms (and moms-to-be!) living with chronic illnesses, I also want to get back to working with the juvenile arthritis community (and, in fact, in the next few months I'll be speaking at both JA Conferences and volunteering as a counselor at JA Camp again!) I've also signed up to try riding myself in the 2016 California Coast Classic, and I finally busted out my dusty old law degree by agreeing to help write the 5th edition of International Environmental Law in a Nutshell. Also? Raising two crazy little dudes! So it's looking to be a very busy year! Wish me luck!

From This Point. Forward.

Friday, July 1, 2016

Facing Forward: Jen

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: Jen
Location: Philadelphia, PA
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: I was diagnosed two years ago at age 34.  I had been having joint pain, fatigue, and intermittent fevers throughout my last semester of graduate school.  The week after I finished the program, I finally made time to go to see my primary care doctor, and that was when I was told my bloodwork was consistent with RA and that I should see a rheumatologist.​​

How are you currently treating your condition?
I take Plaquenil, methotrexate, folic acid, and bursts of prednisone when needed. 
 
What are the biggest challenges you have faced since your diagnosis?
One of the most challenging things for me has been accepting that this is my new reality.  How I’m feeling physically can change so quickly. I am amazed how hard-hitting the fatigue can be sometimes.  It’s caused me to reevaluate how I need to take care of myself.  I used to leave very little time for self-care, and this disease has taught me how important it is to make time for adequate sleep, better nutrition, and physical activity that doesn’t stress out my joints.

What are your favorite tips and tricks for managing everyday tasks?
Setting realistic expectations and goals is number one.  I’m fortunate that my symptoms haven’t been as severe since I started methotrexate last year, but I still have to pace myself and learn to stop and take breaks instead of charging through the day.   Thermacare heat wraps around my lower back are amazing for when I’m having a flare in my hips. 

How do you manage to keep facing forward every day?
I say the serenity prayer a lot.  I have a very supportive husband and two spirited and funny daughters who make life awesome.  I also have “me time” 2 or 3 times per week when I go play table tennis, which I really enjoy and helps keep me fairly active.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Diagnosis day was only about 2.5 years ago for me, but one thing I’d tell myself is that this disease doesn’t rapidly progress downhill in a steep, straight line…at least, not for me...so don’t lose all hope when you’re having a bad day (or stretch of days).  Keep focused on what you do have control of and go from there.


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