Title: From This Point. Forward.
Description: From This Point. Forward. Pages Home About Health Union Articles Guest Articles Confences Speaking Media Volunteer Work Thursday, August 4, 2016 Interview in Elevation Outdoors I was re
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From This Point. Forward. Pages Home About Health Union Articles Guest Articles Confences Speaking Media Volunteer Work Thursday, August 4, 2016 Interview in Elevation Outdoors I was recently featured in Elevation Outdoors - a magazine focused on outdoor sports, health/fitness, and adventure travel in Colorado - for my upcoming participation in the California Coast Classic bike ride for the Arthritis Foundation. You can check out the full article here! I'm excited that I have already reached my fundraising minimum for the ride - and APL is very close to reaching his as well. Our other two teammates are still working to meet their goals, so if you'd like to make a tax deductible contribution to support our team you can do so here! Any amount, no matter how small, improves the lives of people living with arthritis! Posted by ~Mariah~ at 2:39:00 PM No comments: Links to this post Labels: Activism, CCC, Optimism Op-ed Opportunity Through the Global Health Living Foundation The Global Healthy Living Foundation is as a non-profit organization with the mission to improve the quality of life for people living with chronic illnesses. Right now they are looking for patients to share their perspective on what it is like to be denied access to care. Has your insurance company ever refused to cover the medication your doctor wanted you to try? Would you be willing to share your story to help advocate for change? If so, please contact Sarah Aoanan at firstname.lastname@example.org! Posted by ~Mariah~ at 11:44:00 AM No comments: Links to this post Labels: Activism, Hope From Strangers, Optimism Monday, August 1, 2016 Mamas Facing Forward – A Community to Help Mamas Facing Chronic Illnesses Move Forward When I realized that there seemed to be no resources addressing the unique challenges of motherhood with a chronic illness, I decided to start one of my own. Read more at RheumatoidArthritis.net. Click here to request to join Mamas Facing Forward! Posted by ~Mariah~ at 4:30:00 PM 1 comment: Links to this post Labels: Activism, Hope From Strangers, Mom Thoughts!, My Amazing Little Family, Optimism, Parenting, Pregnancy, Sex 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? 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. 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. 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. 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 email@example.com. Posted by ~Mariah~ at 9:00:00 AM No comments: Links to this post Labels: Facing Forward, Hope From Strangers, Optimism 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. Rear more at RheumatoidArthritis.net. Posted by ~Mariah~ at 5:30:00 PM No comments: Links to this post Labels: Activism, Hope From Strangers, My Amazing Little Family, Optimism, Parenting, Pregnancy 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!! Posted by ~Mariah~ at 10:20:00 AM No comments: Links to this post Labels: Activism, Hope From Strangers, Invisible Illness, Optimism 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! Posted by ~Mariah~ at 9:56:00 AM No comments: Links to this post Labels: Activism, Hope From Strangers, Invisible Illness, Laughter is the Best Medicine, Optimism, Sex 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. Read more at RheumatoidArthritis.net. Posted by ~Mariah~ at 5:00:00 PM No comments: Links to this post Labels: Breastfeeding, Mom Thoughts!, My Amazing Little Family, Optimism, Parenting 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! Posted by ~Mariah~ at 11:23:00 AM 1 comment: Links to this post Labels: Activism, Hope From Strangers, Optimism 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 firstname.lastname@example.org. Posted by ~Mariah~ at 9:00:00 AM No comments: Links to this post Labels: Activism, Facing Forward, Hope From Strangers, Optimism Older Posts Home Subscribe to: Posts (Atom) ABOUT HOW TO FOLLOW ME Follow @MariahForward Posts Atom Posts All Comments Atom All Comments HOW TO CONTACT ME mariah@ fromthispointforward.com SUPPORT FOR MOMS! If you are a mom (or want to become one!) living with a chronic illness, come join our support community on Facebook! Click the image above and request to join! POSTS BY TOPIC Activism (193) Anxiety (27) Biosimilars (10) Blood Pressure (18) Breastfeeding (27) CCC (21) Discouraged (135) Enbrel (62) Facing Forward (48) Fatigue (118) Fever (3) Gluten-Free (5) Hashimoto's (6) Hope From Strangers (133) Infections (24) Insurance (40) Invisible Illness (63) Joint Decisions (7) Laughter is the Best Medicine (61) Massage (12) Methotrexate (22) Mom Thoughts! (21) My Amazing Little Family (127) NewLifeOutlook (1) News (14) Optimism (423) Orencia (8) Pain in the Back (10) Pain in the Feet (29) Pain in the Hand (69) Pain in the Hip (38) Pain in the Jaw (7) Pain in the Knee (37) Pain in the Shoulder (10) Parenting (72) Physical Therapy (14) Pilates (7) Prednisone (35) Pregnancy (95) Remicade (26) Resources (30) Reviews (5) RheumatoidArthritis.net (95) Rituxan (18) Sex (25) Side Effects (6) Sleep (25) Team Z (30) Travel (42) Vicodin (18) RESOURCES Not Standing Still's Disease The latest from the rheumy 1 day ago Getting Closer To Myself Self Care = Must Care 2 days ago Inflamed: Living with Rheumatoid Arthritis Anemia & RA 2 days ago Carla's Corner In a Word … 3 days ago Rheumatoid Arthritis Guy What Really Matters. And What Doesn’t. 4 days ago The Life and Adventures of Cateepoo Self-Love: Sex 1 week ago Living with Rheumatoid Arthritis Healthline’s Best RA Blogs of 2016 1 week ago RheumaBlog Ow! …I mean, Ohm! 1 week ago All Flared Up: An Arthritis Blog I’m too sexy for my…night guard 4 weeks ago Living Life As I See Fit Five Things I Hope My Teen Son Understands 4 weeks ago The Enthusiastic Life Childhood Memories and Lessons that Influence my Work as a Pediatric Occupational Therapist: Part 1 5 weeks ago All Grown Up with JRA My Adventure into Acupuncture 2 months ago Curly Bones Birthdays, D&C and still recovering... 3 months ago JIA Mom's Blog (Not such a) Peaceful Easy Feeling 6 months ago Hurt Blogger Rolling The Dice: Today I Started Xeljanz 8 months ago Spoonless Momma Old Friends and Profound Questions 8 months ago RArainbow #RABlogWeek – Day 5 – Exercise and RA 10 months ago TEAM Z FUNDRAISING!! 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October (6) ? September (11) ? August (8) ? July (5) ? June (6) ? May (9) ? April (4) ? March (9) ? February (1) ? 2010 (118) ? December (5) ? November (12) ? October (5) ? September (9) ? August (7) ? July (8) ? June (9) ? May (6) ? April (19) ? March (9) ? February (22) ? January (7) ? 2009 (110) ? December (15) ? November (15) ? October (13) ? September (8) ? August (2) ? July (2) ? June (11) ? May (10) ? April (8) ? March (12) ? February (10) ? January (4) ? 2008 (38) ? December (4) ? November (11) ? October (20) ? September (3) ~ ~ The Itsy Bitsy Spider ~ ~ My cousin has RA but still makes the most adorable crochet animals you've ever seen! BLOG AWARDS ? The Fine Print This blog is a record of my personal experiences after being diagnosed with rheumatoid arthritis (RA) in June 2008. It is not intended for use as a source of health advice. You are more than welcome to link to this blog from your website. However, materials from this blog may not be re-used without my permission. 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