Friday, August 26, 2016

Facing Forward: Katie

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: Katie
Diagnosis: RA, Mild Lupus, Small Fiber Neuropathy, Dry Eye Disease, Raynaud's Disease
Age at Diagnosis: 34

How are you currently treating your condition?
Methotrexate, Plaquinel, Lose Dose Naltrexone. I try to eat clean, healthy foods.
 
What are the biggest challenges you have faced since your diagnosis?
Balancing work, family, and disease. Many days it feels like each one is a full time job and I get really overwhelmed. 

What are your favorite tips and tricks for managing everyday tasks?
My kids are 8 and 13, and I rely on them to "go get things" for me a lot! I have found that adequate rest is a must to get through the next day. I require much more sleep than I used to. I make it a priority to get 9 hours of sleep every night. During the winter, I set up a portable heater in my office to keep me warm, and I wear gloves all the time. I don't get as stiff and sore if I'm warm, and it's much easier to get through my work day.

How do you manage to keep facing forward every day?
As my disease progressed I struggled greatly with acceptance. But, the more this becomes my day to day reality, the more I see how strong I am inside and out. I have a lot of life left in me. My children need me to be there physically and emotionally for them. They are my driving force! There are still a lot of unanswered questions about my disease, and I am having more tests and new treatments in the near future. This can be frustrating. I am really fortunate to have a supportive rheumatologist and family. I couldn't get through all of this without them.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I was relieved to be diagnosed. It had been a long time without a formal diagnosis. I would tell my old self to take things one day at a time. Be involved in a support group and ask for help from family when needed.


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

Monday, August 22, 2016

What Does Rheumatoid Arthritis Feel Like?

When I was first asked to write about what it feels like to live with rheumatoid arthritis (RA), I thought it would be pretty easy. After all, I’ve been living with RA for the last eight years — that should give me enough experience to explain what it’s like. But as I really started thinking about it, I realized it was more of a challenge than I expected.

Friday, August 19, 2016

Facing Forward: Ashley

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: Ashley
Location: Hutchinson, Kansas
Diagnosis: psoriatic arthritis
Age at Diagnosis: 26 for official diagnosis

How are you currently treating your condition?
I first went to a rheumatologist who said I had tennis elbow and gave me shots in my wrist and elbow. My blood work was clear and he just said I carried too many grocery bags. At this point it was just my left arm. I went to a chiropractor to did an ultrasound treatment on my arm, but shortly the pain traveled to my right arm. I then went to a Kinesiologist doctor for a year. We tried many different natural products but I continued to get worse. We did the healing diet and many natural supplements but I continued to get worse. My current rheumatologist, who gave me a diagnosis, has been treating me for 3 years. My blood work is still clear but I am not symptom free. Currently I am on Orencia, mtx, hydroxychloroquine, sulfasalazine, along with folic acid and vitamin D. I have done bi-weekly acupuncture treatments to help with the pain as well. While I do have a diagnosis of psoriatic arthritis she is often still searching for something else, but psoriatic arthritis fits the best.
 
What are the biggest challenges you have faced since your diagnosis?
I have had a hard time accepting the invisible illness part of it and how I can feel bad but others have no idea. I sometimes think that if I complain about the pain then maybe it will be more real to others. I am working on getting over that. My job as a preschool teacher assistant got hard to do as well as I wanted and the kids deserved. I am often tired by the end of a full work day and still have home duties to work on. My relationship with my kids and husband suffer as well, as I put limits on myself as to what I can do with them.

What are your favorite tips and tricks for managing everyday tasks?
I use OTC pain relief as needed as well as some pain relief creams. I use heating pats or ice as needed and try to limit stair use when my knees are hurting by keeping a laundry basket at the top of my stairs and having my kids, 9 and 13, help with laundry. I use a hand grip to open jars and cups/lids or ask others to help. I still try to do harder tasks such as mowing on days I feel good!

How do you manage to keep facing forward every day?
I try to find join in the things I enjoy such as nature and gardening and photography. I enjoy my animals and watching the job in my children and husband when they talk about things they love. I love working with children both in my job and at church. I push on daily for all those things.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Don't give up and try to do as much as you can! Don't sell yourself short on what you can do just because you think it might hurt.

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

Tuesday, August 16, 2016

Juvenile Arthritis Conference East - Relationships & Intimacy

I took a whirlwind trip to Philadelphia over the weekend to speak again to young adults living with arthritis about relationships and intimacy - this time at the Juvenile Arthritis Conference East. I really enjoyed the chance to be on the panel and to discuss this very important topic.

There were a few more young adults in attendance at this session than there were in Phoenix, and we got so many good questions submitted anonymously when we collected the index cards that unfortunately we weren't able to answer them all before running out of time. But hopefully Kirsten and I will be able to address the unanswered questions soon on the Chronic Sex webpage - so I'll be sure to share a link here when we do! 

All of those great questions just goes to show that we really do need to keep fighting for more resources addressing how chronic illness can impact relationships and intimacy. I'm still thrilled that the Arthritis Foundation is willing to embrace this topic - and I hope that they continue to do so going forward as it is a topic that ultimately plays a huge role in quality of life for people living with arthritis.

Friday, August 12, 2016

Product Review: Aromafloria Muscle Soak Collection & Inhalation Beads

I have been given these products as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. As stated in my product review policy, my reviews will always be honest.

For thousands of years, essential oils and botanical extracts have been used to promote well-being through aromatherapy. I have to admit that I've always been a little bit skeptical, particularly because strong scents usually give me quite a headache! But when I was given the opportunity to review some of Aromafloria's product, I saw that they had a "muscle soak" line that was intended to soothe sore muscles, ease tension, and leave you energized. Several of these products were mineral bath salts - and Epsom salt soaks have become an important part of my pain management routine - so I decided to give them a try.

Aromafloria generously sent me the following products: 

The Muscle Soak products include essential oils of eucalyptus, peppermint, and lemongrass - which are all scents that I enjoy in small amounts! I was pleasantly surprised to discover that the aroma of the Muscle Soak products was actually quite mild and pleasant - and did not cause any sort of headache for me. Eucalyptus oil is supposed to stimulate the mind, aid concentration, and relieve muscle and joint pain. Peppermint oil is supposed to create a cool, tingling sensation on the skin and have a calming effect on the body, which can also relieve sore muscles. Lemongrass is supposed to energize and tone the skin. My favorite products in the Muscle Soak line were the Mineral Bath Salts and the Bath & Body Massage Oil. 

The Mineral Bath Salts work similar to Epsom salts in that the minerals are absorbed through your skin into your body to help sedate the nervous system and relieve stress - only these salts had the added benefit of the essential oils and pleasant scent. They gave the water a slightly green tinge, but it wasn't unpleasant. And although this may sound strange coming from someone who started out this review by saying that I didn't like strong scents, I honestly wish the scent of these bath salts had been just a little bit stronger. I really like the way eucalyptus smells and I would have liked to have been able to inhale just a bit more of that while relaxing in the tub. But, overall, the Mineral Bath Salts made for a very plesant bath and a nice, relaxing treat.

The Massage Oil is created with special skin nourishing components that are absorbed quickly, and I must say that one of the things I liked best about it was how quickly it absorbed into my skin. The oil was just slippery enough for a nice massage, but didn't leave me feeling like I had rolled in olive oil. In fact, I think it made my skin feel quite soft afterwards. In this case I also wish that the eucalyptus scent might have been just a bit stronger. Also, with the peppermint oil I expected to feel a slight tingling or "icy hot" effect, but I didn't experience anything like that. So, other than to provide a mild, pleasant scent, I'm not positive about the benefits of the essential oils. But on the whole I did really like the quality of the massage oil.

I found the idea of the inhalation beads to be a bit bizarre, to be perfectly honest. The little beads are infused with essential oils, you put a few in a little mesh bag, and then you hold the pouch to your nose and inhale deeply a few times. Just from opening the jar I could tell that the scent of this product was a lot stronger than the other products. I fully expected following the directions to result in a terrible headache, but I gave it a try anyways. I was surprised to discover that inhaling the beads did not trigger a headache - and I found myself wanting to smell them again! It was strangely sort of satisfying to inhale the scent deeply. I ended up having a terrible night sleep after trying the Sleep Ease Inhalation Beads, but that may have been due to other factors and I am actually curious to experiment with the beads a bit more.

I am also impressed by the company's environmentally friendly policies. All the products are manufactured in a USDA Certified Organic facility that is 100% wind powered, and ingredients are sourced from fair trade markets and grown by sustainable growers.  So all in all, I had a lot of fun reviewing these products and look forward to making use of them more in the future!

Facing Forward: Nathalie

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: Nathalie
Location: Navan, Ontario (near Ottawa)
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: 31

How are you currently treating your condition?
From a medical standpoint, I have tried various combinations. With my disease relatively stable, I am able to be on mono-therapy, and am currently only on my second biologic (Actemra).

On other fronts, I have made changes in my life to have a better work-life balance so that I can get the rest I need. I exercise regularly. I make an effort to eat healthy, with lots of fruits and veggies.
 
What are the biggest challenges you have faced since your diagnosis?

My biggest challenge has been coming to grips with the fact that I have RA. For me, it was the loss of who I used to be...and getting used to who I am now. I can't do all the things I used to do, but I can do other things. And it was these other things I needed to embrace.

The other challenges have been directly related to my disease. I have had two shoulder replacements. I had to delay my pregnancy and the birth of my beautiful boy. Add I have had to deal with fatigue regularly.

What are your favorite tips and tricks for managing everyday tasks?
I have learned to focus (or try to, in any case) on what is the most important. For example, I don't get fussed about dusting and housework. I try not to bring work home. I do things that make me happy, like being part of a book club and volunteering.

I have also learned to ask for help when I need it. For example, lifting something heavy, or going for something on the top shelf at the grocery store.

When I have to do something that will take more effort, I make sure I am rested. If I can't do something because I am too tired, or I hurt, I don't get upset at myself, I know I will do it when I can.

How do you manage to keep facing forward every day?
I look forward to being the best mom and wife I can be. I look forward to being with my friends. I look forward to contributing at work and supporting others with RA through my work with the Canadian Arthritis Patient Alliance (CAPA).

When things become overwhelming, I take a step back and try to figure out what is going on...and I often find that getting more rest, eating better, and getting my pain under control goes a long way.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would tell myself that my life will continue. It will not always be easy, and there will be some bumps and zigzags along the way, but it will be good. I would tell myself that I will still be able to do most of the things I have always wanted to do with my life, including having a fulfilling career and a family. Most importantly, I would tell myself not to be scared. And to learn as muc has I can about my disease and what I can do to help myself.

Do you have a blog you would like to share?
Please find more about what is going on in the arthritis community by checking the CAPA website. 

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

Friday, August 5, 2016

Facing Forward: Sara

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: Sara
Location: Cincinnati, OH
Diagnosis: My primary diagnosis is Hypermobile Ehlers-Danlos Syndrome. Co-morbid conditions include: Anxiety, Asthma, Cervicogenic Headache, CFS/ME, Chronic/Intractable Migraine w/ Persistent Aura, Depression, Fibromyalgia, Food Allergies and Intolerances, Functional Dyspepsia, GERD, Irritable Bowel Syndrome, Migrainous Vertigo, Occipital Neuralgia, and TMJ. It's also suspected that I have Mast Cell Activation Syndrome (MCAS) and Post Orthostatic Tachycardia Syndrome (POTS) - a type of dysautonomia, but these have not yet been confirmed. Most of these conditions are experessions of my EDS. 
Age at Diagnosis: My first chronic health condition (Basilar Migraine) was diagnosed wt 18. This is also the age at which I began displaying symptoms of EDS, which was not diagnosed until a decade later at 28.

How are you currently treating your condition?
I take more than 20 medications and supplements daily (sometimes multiple times a day). I also have about 15 medications that I take on an as needed basis. When my migraines are at their worst I used injections, infusions, and nerve blocks to help alleviate symptoms.

I also attended occupational and physical therapy to work on strengthening the muscles that support my spine and other joints, and improving my balance/proprioception (I fall A LOT!)

I have tried many different elimination diets to improve my symptoms. Currently, I follow a diet called The Abascal Way. It requires elimination of most major food allergens (gluten, dairy, shellfish, etc.) and all sugar. It also dictates that all protein and carbs must be eaten in proportion to fruits and vegetables (more fruits and veggies!) I also avoid foods I know to be migraine triggers. As a result, in many ways it ends up being similar to an Autoimmune Paleo Protocol. It is NOT a cure, but it helps me manage my symptoms.

Additionally, I see a pain psychologist and practice meditation regularly.
 
What are the biggest challenges you have faced since your diagnosis?
Honestly, my biggest challenge since becoming chronically ill has been getting the EDS diagnosis. Hypermobile EDS is under-recognized, and doctors do not often connect all of the conditions it can cause and look at the whole picture. Since my EDS diagnosis earlier this year my biggest challenge has been identifying co-morbid conditions I wasn't already aware of (like POTS and MCAS), and getting appropriate recommendations for treatment.

What are your favorite tips and tricks for managing everyday tasks?
Be kind to yourself. Believe that no matter what, you are enough. Put self-care tasks on your to-do list. Prioritize them. Allow yourself to rest and recognize that doing so is not only necessary but productive when you have a chronic illness.

How do you manage to keep facing forward every day?
I practice mindfulness and gratitude throughout my day. I celebrate all that I am able to do. Sometimes, I allow myself to do things I shouldn't. I choose to believe that "life does not have to be perfect to be wonderful." (A fellow chronic illness warrior, Annette Funicello, once said this). It is because of this that I'm able to plan for the future, even though it is uncertain.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
You are a fighter; you made it this far. You will figure it out, and when you do the important people will still be there. Breathe and "Just Keep Swimming!"

Do you have a blog you would like to share?
My blog is Zebra Writes.

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

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!


Op-ed Opportunity Through the Global Health Living Foundation

The Global Healthy Living Foundation is 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 saoanan@ghlf.org!


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.