Thursday, May 25, 2017

It's Complicated: Starting A Family With RA

Clara is a patient-first and patient-centered company working to help patients access breakthrough clinical trials. In my guest post for their blog, I share my own experiences with research and explain why I think it's so important for all of us!

Read more at Clara Blog!

Friday, May 19, 2017

Facing Forward: Ava

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: Ava
Location: Charlotte, North Carolina
Diagnoses: Lupus, fibromyalgia, early onset osteoarthritis
Age at Diagnoses: 26 / 25 / 24 – I’ve received one diagnosis a year for the past three years

How are you currently treating your conditions?
I’ve recently started taking an immunosuppressant for my lupus.  I’ve been taking a muscle relaxer for my fibromyalgia over the past year, which helps me to sleep and seems to “reset” my muscle tension overnight.   I also take a beta blocker because my chronic pain has significantly increased my anxiety levels and blood pressure.

I have a few different techniques for managing my joint and muscle pain.  I take NSAIDS (nonsteroidal anti-inflammatory drugs) as infrequently as possible, which usually means once or twice a week.  I like to use Icy Hot pain relieving liquid (especially the no mess roll-on applicator) and warming HOE muscle rub from The Fay Farm (which is very calming) occasionally for my neck pain.  I liberally use heating pads and ice packs and I typically take Epsom salt baths every day.  I’ve also found that brief physical activity can help with brain fog.

Perhaps the most important part of my treatment plan, however, is resting often and not being too hard on myself.  Additionally, I spend a lot of time with my pet budgie, who is very loving and makes me laugh a lot – which goes a long way in helping me to feel better.


What are the biggest challenges you have faced since your diagnosis?
The hardest thing about my chronic illnesses is that I never get a break from them.  I never have a week or even an afternoon off from my pain.  The constant weight of my pain and fatigue makes it extremely difficult to remain positive and hopeful at times.  Thankfully, my spouse, family, and friends are always there to encourage me when things are at their worst.

Furthermore, being sick all has taken away some of my greatest joys in life.  I can no longer work full time, sleep in on a Saturday, or finish simple physical tasks by myself.  It’s been a huge learning curve for me to accept my limitations, especially because I love to travel and see new things.  Being happy when I’m often confined to my home is something I’ve yet to master entirely.  It is hard to find contentment in a drastically different lifestyle that you never wanted or expected.


What are your favorite tips and tricks for managing everyday tasks?
My number one strategy is making a plan and giving myself a lot of time to complete it.  It might take me a few days to prepare for a trip or outing, since I accomplish most things in very small increments.  For example, it might take me an entire day to do the dishes.  I’ll unload the first half of the dishwasher in the morning, the second half in the afternoon, and perhaps in the evening I’ll finally manage to wash the dirty dishes and load them.  Nothing happens quickly for me anymore.

I’ve automated and optimized my cleaning routine as much as possible and I’m always looking for new ways to improve it.  This can be anything from using self-cleaning products, such as toilet pod or a Roomba, to stashing cleaning supplies throughout my home (so that I don’t have to expend energy retrieving them).  I also make an effort to clean things as I go because it usually is more work to clean up a mess after it has been sitting for a while.


How do you manage to keep facing forward every day?
Having a personal blog has been life changing for me because I’m able to connect with like-minded travelers and fellow chronic illness sufferers.  It is my main motivation for getting out of bed each morning.  I love receiving feedback that someone enjoyed my post or that they understand what I’m going through.  The online community I’ve found is incredibly supportive and inspiring.

I also try to focus on the positive things in my life as much as I can.  I create lists of things I’m thankful for often, such as four good things that have come from my chronic illnesses.  I started doing this after reading what Jodi Ettenberg had to say about practicing gratitude daily in her post Learning to cope with chronic pain.

Lastly, receiving plenty of emotional support from my friends, family, and pet bird really helps me get through each day.  My bird, Koopa, is with me all day – playing, singing, cuddling and keeping me entertained when I’m feeling down.  For me, having a pet is vital to staying positive with chronic illness.


If you could go back to diagnosis day and tell your past self one thing, what would it be?
When I was diagnosed with early onset osteoarthritis, I would have told myself to calm down because I’d need my strength further down the line.

When I was diagnosed with fibromyalgia, I would have told myself to find another doctor.  I was living in Germany at the time and I was afraid to afraid to seek out another doctor.  But the one I was seeing wasn’t helping me and resulted in unnecessary pain and suffering. 

When I was diagnosed with lupus, I would have told myself to focus on the bright side.  This diagnosis would bring me into the lupus community - I wouldn’t be as alone in my fight against chronic illness.  I’d get the correct treatment and things could finally start to get better.


Do you have a blog you would like to share?
Yes, I blog about travel, expat life, and chronic illness over at My Meena Life.  You can find all my chronic illness posts here.

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


Wednesday, May 17, 2017

Achieving a Big Goal When You Have A Chronic Illness

Uncertainty about your health can make it hard to make plans far in advance. But living with a chronic illness shouldn't mean you have to give up on goals that are important to you - whether it's an athletic milestone, a trip to your dream destination, or starting a family. 

In my newest post for Mango Health, I've shared four tips to help you approach - and achieve - big goals!

Friday, May 12, 2017

Facing Forward: Sam

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: Sam
Location: Brisbane, Queensland, Australia
Diagnoses/Age at Diagnoses:
1. Rare Genetic Bone Disease ( resulting in pathological fractures of both my mid shaft femurs which are not able to heal plus constant foot fractures). My bone density is too high & my bone turnover is almost negligible. While my disease is idiopathic in nature, ( disease of its own kind) it most closely resembles the rare bone disease Osteopetrosis

2. Rheumatoid Arthritis

3. Permanent Colostomy due to non functioning bowel/ severe bowel prolapse

Age at Diagnosis/Diagnoses: 
1. Rare Bone Disease diagnosed age 49

2. Rheumatoid Arthritis diagnosed age 45

3. Permanent Colostomy age 48

How are you currently treating your conditions?
My rare bone disease is progressive & unfortunately has no treatment or cure. I am under the care of an Orthopaedic Surgeon who operates on broken bones & reviews my non-union femur break every 3 to 6 months. He is also on call for me in case of emergencies, which gives my husband & I great peace of mind. I am also under the care of an Endocrinologist who monitors my bone disease progression through 6 monthly bone marker blood tests & bone density tests.

My Rheumatoid Arthritis is managed reasonably well with medication. I have had severe reactions to many RA meds, so my mainstay is Prednisone & Plaquenil. I used to love gentle exercise to help manage my RA but now having 2 broken legs & my physical disability increasing, that part of my treatment is no longer possible.

My colostomy was actually a blessing (as surprising as that may sound). The pain I had prior due to my bowel prolapse & resulting non-functioning bowel, was horrendous. My stoma (affectionately nicknamed Rudolph) has been an absolute lifesaver.

What are the biggest challenges you have faced since your diagnosis?
My biggest challenge is my bone disease & not knowing when another bone may completely break or a stress fracture appear. It is like living with a time bomb ticking in the background.

What are your favorite tips and tricks for managing everyday tasks?
Pace, pace, pace!
I used to live life at such a fast speed managing a successful career & home life. I loved every minute of it, but when chronic illness & disease strikes, you just cannot live the same way.
Today I am incredibly limited in what I can do physically & spend most of my time at home apart from medical appointments. I do like to still care for my home though. My husband is my full time carer so he cooks & does the washing, but I still potter with dusting & cleaning (crutches can be very useful for lots of cleaning activities ). I just have to pace. 10 mins of activity, 30 mins rest. It's amazing how much you can achieve even in those short bursts with 2 broken legs!!

How do you manage to keep facing forward every day?
I have been asked this question many times. Friends and acquaintances are always so relieved when they see me in person, as I look so normal. I don’t look sick and some of that is due to my coping mechanisms! It has also been well documented about the fact that autoimmune diseases, in general, don’t cause a person to look sick. In fact Rheumatoid Arthritis joint damage can take years to show. My bone disease is a bit of a giveaway due to crutches & a very weird walk if I try stepping forward without them.

So how do I cope when I have Rheumatoid Arthritis, a stoma, pathological broken femurs as a result of an idiopathic bone disease that makes future bone breaks a real possibility?  Aside from acceptance of my circumstances, there is a mix of practical and spiritual coping mechanisms that I have:

I might not be working anymore but I still take the time each and every day to get up, get showered and dressed, and do my hair and makeup. Ensuring I stick to this normal routine is incredibly important to my overall sense of well-being. I don’t have a set time to do that every morning, as some mornings my body just won’t move or function until after my morning medication has kicked in, but that aside I still make sure I keep to my daily routine and look after myself. I feel so much better if I do that.

I keep my brain active. I read, I listen to music, I talk to friends, I research whatever I’m interested in at any point in time, I keep up with current affairs, I play games on my tablet and I write/blog. An exercised brain makes me feel healthier, particularly if I can’t exercise my body!

I’ve always loved shopping but no longer have the energy or desire to spend hours at shopping centres, but I love to shop online. Retail therapy really does work when all else fails! Maybe it’s a girl thing!!

I also reach out to others, which removes the focus on my health. I have an online support forum on the back of my blog for people living with chronic & complex diseases & I am also a volunteer online support forum administrator for Arthritis Queensland. This is an Australian charitable organization set up to support people living with arthritis & to raise awareness of the different arthritic diseases affecting children & adults. They also raise funds for important research.

I also have a strong faith in God. In the midst of the lost dreams and physical battles that I’ve faced over the past few years, one thing I can absolutely testify to is knowing that God’s hand is on my life, and not just in regards to my health but in all aspects of my life. I have a personal faith and as a Christian I find great peace in prayer and in knowing that I am never alone. My health has prevented me from being able to attend church over the past 3 years, and that is a real loss for me. But even when my husband heads off to church on a Sunday morning (he’s an Anglican Clergyman), I use the time to quietly reflect and renew my soul.  I know that caring for my spiritual life is the key to my ability to cope.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Hang in there, life will still be rich & rewarding. Good things still lie ahead.

Do you have a blog you would like to share?
Yes, my blog is called My Medical Musings. I also have my online support forum, which is a closed Facebook group for anyone with a chronic & complex disease looking for a safe place to find support & friendship. Chronic Illness bloggers are also welcome to join & post their blog links. A warm welcome awaits.
  
Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Tuesday, May 9, 2017

Patient's Rising - Voices of Value

As those of you who follow me on Instragram may already know, it's been an extremely busy spring for my family! Our recent crazy life is the reason it has taken me so long to share the videos interviews I did for Patient's Rising, a non-profit group that advocates for patients rights. I'm honored to have had my story featured, and I truly hope that it will help bring awareness to others when it comes to important issues like access to care. (Also shout out to my friend Chantelle, another amazing RA advocate, who is also featured in these videos!) 

And, on second thought, perhaps these videos are even more timely right now - considering everything that has been going on with healthcare legislation over the past week!

Rheumatoid Arthritis - Patient Access to Care 


Rheumatoid Arthritis - The Patient Voice


Rheumatoid Arthritis - Mariah's Story


Rheumatoid Arthritis - Chantelle's Story 



Friday, May 5, 2017

Facing Forward: Elizabeth


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: Elizabeth
Location: NW Ohio
Diagnoses: Chronic Migraine Disease
Age at Diagnoses: 9 (Severe episodic)
Age at transition to chronic: 30

How are you currently treating your conditions?
I’m involved in my second clinical trial of CGRP antagonist preventive medications (first was Amgen, can't reveal the second company). Primary pain symptoms significantly relieved without side effects. However, still have secondary migraine symptoms of nausea, vomiting, anxiety, depression, allodynia, tinnitus, cognitive dysfunction, and facial autonomic symptoms that are frustrating to occasionally debilitating. Also: treat with acute medications. Sumatriptan tablets and injections, tizanidine, zofran, opioids for rescue, and occasional ER visits for intractable pain.

What are the biggest challenges you have faced since your diagnosis?
Striving to still have a life while being told treating every migraine attack will lead to medication overuse headache. Raising my young girls. Losing my job and gradually being well enough to work from home for migraine.com and a local online news journal I helped found. A relationship with my partner and caregiver. Facing each day. Managing to stay positive through very difficult conditions and transitions.

What are your favorite tips and tricks for managing everyday tasks?
Sleep when needed, whenever that may be. Eating lightly and often and staying hydrated. Using mentholated Salonpas patches on my forehead, and oddly, Highland's homepathic "Migraine" dissolvable tablets (ordered on internet). Not pushing myself but also not giving up what is important to me, like being part of my daughters' dance and theatre productions.

How do you manage to keep facing forward every day?
I keep facing forward because the alternative is unthinkable. I want my daughters to see strength despite adversity. And I must always hang on to hope that things will get better. The CGRP trials certainly help with that.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I wish I could tell my child and teen self that yes, you will face a life of hardship due to this disease, but you will not be alone. Doctors may mistreat you, teachers may disbelieve you, but don't give up. Help will be coming in more ways than you can possibly know.

Do you have a blog you would like to share?
I blog at ladymigraine.com and have a beautiful graphic novel created with my partner about family life with chronic migraine at migraine365.com. I also am a patient advocate and moderator at migraine.com.

Friday, April 28, 2017

Facing Forward: Bree


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: Bree
Location: I live in Australia. Currently living in a country town about 2.5 hours out of Melbourne. I was born and raised in Perth Western Australia.
Diagnoses: I have been diagnosed with Tuberous Sclerosis, Lam Lung disease, Hashimoto thyroid disease, High blood Pressure, Meniers Disease, Anxiety, Osteoarthritis. I think that’s all. Tuberous Sclerosis and Lam lung disease are both rare diseases.
Age at Diagnoses: TS I was diagnosed at the age of 26 when my youngest child was also diagnosed with it. Lam lung disease was 4 years ago. Thyroid disease 11 years. Meniers 2 years ago. Osteoarthritis yesterday. High blood pressure somewhere in the middle of all of this. Anxiety about 11 years ago.

How are you currently treating your condition/conditions?
I am currently on NDT - natural Desiccated thyroid extract or armor for the thyroid. I take blood pressure medication daily and I am currently on Lyrica and increasing it for the pain of the osteoarthritis.Oh! I forgot I also have fibromyalgia, which the Lyrica was initially prescribed for. I also take an over the counter drug call panadol osteo which also helps with the pain. I also take B12, Seliuim, zinc, and I have changed my eating to not including grains, legumes or gluten. I have coffee with milk and that’s about it. I walk my dogs at least once a day, and I walk in the pool at least once a week. Working on doing more of that.

What are the biggest challenges you have faced since your diagnosis?
Biggest challenge is having to give up work due to the fatigue and the pain.

What are your favorite tips and tricks for managing everyday tasks?
I hope for the day I am pain free. Walking has helped me a lot. When in Europe last year, not having to do the mundane of housework cooking etc. I was able to concentrate on me. Unfortunately, we don't get that choice in our day-to-day life.

How do you manage to keep facing forward every day?
I am very lucky even though I have several diagnosed conditions each is fairly mild, except for the osteoarthritis, which is very painful. I consider myself lucky that I can get out and walk even though I am in pain. I am blessed.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Take each day as it comes as you never know where it’s going to lead you.

Do you have a blog you would like to share?
My blog is 3 Sisters Abroad.

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

Friday, April 21, 2017

Facing Forward: Brynn

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: Brynn
Location: Mukilteo, Washington USA
Diagnoses/Age at Diagnosis:  
Juvenile Spondyloarthropathy diagnosed at age 13 (in 1994), but not broadly treated and moved into a Fibromyalgia Diagnosis with possible Mixed Connective Tissue Disease, until a confirmation in 2013 of Seronegative Akylosing Spondylitis (AS). 
Raynaud’s Phenomenon age 13 
Cardiovascular Syncope age 16 
Endometriosis age 16 
Ovarian Cysts age 16 
Migraines age 18 
Osteo-osteoma of Right Humerus age 18 
Fibromyalgia age 22 
Cervical Degenerative Disk Disease C1-C7 age 25 
Degenerative Disk Disease L1-L3 age 25 
Lhermitte’s Phenomenon age 29 
Seronegative Ankylosing Spondylitis age 32.

How are you currently treating your conditions?
Current Treatment for Conditions: It’s taken more than two decades, but I finally have a regimen that seems to treat most of my symptoms and provide some slowing of disease progression for the AS. My early doctors used many NSAIDS (non-steroidal anti-inflammatories) which compromised my kidney function to the point where I can no longer take them without serious kidney complications. 

I also have allergies to Sulfasalazine and Methotrexate, so my options are a little limited for the treatment of the Ankylosing Spondylitis. Currently I have two weekly injections of Enbrel 25mg SC to slow the disease progression. 

For pain and treating additional symptoms of my multiple diagnoses I take a low dose of Morphine Sulfate ER daily for chronic pain, Diazepam 5 mg at bed and at upon waking during night to aid sleep, Clonidine 0.1 mg daily to maintain slow and even heart rate, Tizanadine 4mg mostly at bed, but also throughout the day as needed for muscle spasms, and Intranasal Ketamine 10 mg up to four times per day for breakthrough pain (between infusions). There are lots of other PRN (or as needed) medicines I have on hand for migraine pain, infections, nausea, but I don’t count those as treatment medications. In addition to daily medicines, I use a TENS Unit over my lumbar spine for the pain associated with the degenerative disk disease. 

I’m also part of a Ketamine infusion program at Seattle’s Swedish Hospital for pain control. I’m currently on a treatment plan that calls for two days of infusions once every three months. This program has made the biggest positive impact on my conditions, allowing me to significantly decrease the daily medications with the highest risks, and to feel good; though it’s been challenging to get regular scheduling from the hospital team. 

Along with medicines and medical devices, I’ve found that ample sleep on a specially fitted bed/mattress is extremely important. After having a Tempur-pedic mattress for over a decade, my husband and I moved to adjustable base beds. The change allows me to sleep with my body in different positions based on what sites might be flaring in my body, without the issue of having springs or coils putting pressure on pain points. This is something we just made the change to a couple of months ago, and it’s made an incredible impact. If you are having trouble sleeping, I strongly consider reviewing your mattress and it’s support system. Adjustable bed foundations have gotten much cheaper and provided noticeable relief! 

Staying mobile is also extremely important. I have a dog, who is trained for service, who needs exercise. We take short walks twice a day. I also have an in-home rowing machine that I use four days a week, more if I can tolerate it. For a long time it was counter intuitive for me to be active, and it’s still hard to work on while you’re in pain, but I find it is incredibly important for your body and mind to be active. 
  
What are the biggest challenges you have faced since your diagnosis?
I was young when my condition started, after a traumatic fall. Since my medical issues began in earnest while I was still a minor, many of my medical decisions were made without my knowledge. I didn’t even know about my J. Spondy diagnosis until I was going through my medical records for my disability hearing in 2012, nearly 18 years later. 

The biggest challenges come with knowing my symptoms and disease progression could’ve been different, had I known the extent of my illness and been able to act on it. It takes a lot to move forward from that. For me, the diagnosis has been the easy part. Struggling through twenty years of symptoms and surgeries without an answer was extremely difficult. 

Then there are the challenges that come with being a “professional patient” and a mother. Trying to balance your own health and keep a family running and healthy, after losing the ability to work is also difficult and can be extremely overwhelming.

What are your favorite tips and tricks for managing everyday tasks?
Coming up with a “common language” in our family was essential to running things smoothly. After reading Christine Miserandino’s “The Spoon Theory,” we use “spoons” to describe how much energy something takes or how many chores we have around the house and how much we can do without running on empty. A common language works in our family, and it helps us to plan ahead. We plan ahead with school clothes, meals, after school activities, doctor’s appointments - anywhere we can.

Our family works to get together on Sunday to review the family calendar, where we keep all dates and engagements for all family members. Having one calendar is so much easier than getting school project surprises or meetings mixed up. 

I think it’s also important to ask for help when you need it. I’m not always great at that, but I keep trying. I think it’s also important to know what you’re good at and what you need help doing.

How do you manage to keep facing forward every day?
You’d think after more than 20 years I would have an easy way of facing forward daily, but it’s something I struggle with. I think most people would find it hard to always look on the bright side.

That doesn’t mean that there aren’t things to help keep you focused on the good. I earned my Associates Degree just before my 18th birthday. I always worked, and identified as an earner, which made moving to disability very difficult mentally. 

When I could no longer work, I had to find ways to keep my mind sharp. One of the things I do to stay positive is to keep learning. I volunteer when I can at my daughter’s school as an art docent, so learning new things is essential for me to keep moving forward in teaching children about art. We live in such a big world, yet sometimes it is easy to be pulled into the details of our diseases. I find that continuing to learn keeps that big world open. I keep learning and I teach what I can to others when I am able. I wouldn’t be able to do that without the support of my family and friends. 

Also, humor! It is essential. Being able to laugh, even in the hardest of times has been one of my greatest assets.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
So many different diagnoses, so many days, but my Seronegative Ankylosing Spondylitis diagnosis came after struggles with infertility and finally having my daughter - it was finally knowing what was wrong after more than 30 surgeries and 20 years of mystifying doctors. If I could go back to diagnosis day I would tell myself that things are going to be hard, but remember that you can do hard things. 

I would remind myself to look back on all the days, good and bad, tell myself there will be more days, good and bad, but that my track record for making it through those days has been 100%, and it’s not time to stop that streak.

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

Tuesday, April 18, 2017

May I Have A Prescription for Patience, Please?

Living with a chronic illness necessarily means that you aren’t a stranger to doctors, nurses, needles, X-rays, procedures, etc. However, simply having an abundance of experience doesn’t mean it is always easy to interact with medical providers – especially in situations where you don’t feel well. 

Friday, April 14, 2017

Facing Forward: Megan

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:  Megan
Location:  Australia
Diagnoses: Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Asthma
Age at Diagnosis:  28 for the Fibromyalgia and ME/CFS. I’ve had asthma since I can remember…

How are you currently treating your condition?
At the moment I’ve come off all of my prescribed medications (except for my asthma medication) because I’m pregnant. For me diet hasn’t really made much of an impact on my Fibromyalgia or ME/CFS. The treatments I find most useful are regular acupuncture treatments for the pain, pacing techniques (limiting what I do and trying to have scheduled rest breaks), meditation, and heat in the form of showers and baths. Before becoming pregnant, testosterone supplements were also helping my pain levels.

What are the biggest challenges you have faced since your diagnosis?
Since the Fibromyalgia and ME/CFS, I’ve really struggled to maintain any sort of balance in my life. For the first few years I was unable to do anything I was doing before the symptoms hit. I had to stop working, stop exercising and my life seemed to rotate around medical appointments. I didn’t have the energy to do much socializing. I’ve slowly built some form of balance back into my life but working out a way to do this that lets me live a simple, sustainable, and meaningful life has definitely been a challenge!  

What are your favorite tips and tricks for managing everyday tasks?
Pace yourself and share the load with those around you if you can. I decide what’s most important to me on any given day and prioritize those tasks. If I have enough energy left over after they’ve been completed (with rest in between them), then I’ll consider doing other things. I’ve found it very useful to let go of unrealistic standards I may have been setting myself and to ask for help whenever I can. 

How do you manage to keep facing forward every day?
I try hard to focus on the positive things that are going on. Even on my worst crash day I’ll find one little thing that I can focus on as a positive. It may be time spent cuddled up with the cats, or being able to sit outside in the sun and just soak up the warmth. These days, it can be just feeling my little girl moving inside of me and remembering that this illness hasn’t taken away all of my dreams!

I’ve also been focusing on helping others. I write on my blog when I’m able to (I’ve been less consistent lately because of everything going on) and I’ve written a children’s book to try and help explain invisible illnesses to those around me. Remembering that I can still make a difference, even if it takes me much longer than I’d like to, helps me keep facing forward every day.

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

Stay strong and remain focused on what you can change. Try not to worry about all the things that may or may not be part of your future.  

Do you have a blog you would like to share?
Yes, I blog over a liveken.com about my life with chronic illness and about living a simple, sustainable, and meaningful life.

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

Monday, April 10, 2017

Product Review: Liberty Lotion's Limitless Lotion

I have been given this product 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 own product review policy, my reviews will always be honest.

LibertyLotion's Limitless Lotion is an all-natural, non-GMO lotion with no artificial preservatives or colors. It is advertised as an effective CBD alternative “for your hard to get pain” that won’t leave a greasy residue or lingering scents. I was intrigued, so I jumped at the opportunity to review this product.

While I will agree that the product doesn’t leave a lingering scent, I do think that the initial scent is quite strong. But while I don’t generally like products with a strong scent, I actually quite enjoyed the smell of Liberty Lotion. As far as I can tell, the scent is mostly lavender, but I think there’s also a hint of something else that I couldn’t quite identify (despite reading the ingredients list). In any event, though I do feel that the scent is a little bit strong – at least at first – instead of finding it overpowering I actually found it very pleasant and relaxing. A bit of aromatherapy too!

As claimed, Liberty Lotion does absorb extremely quickly, so you can put it on and go about your business without having to worry about getting it on clothes or bedding. This does mean, however, that it isn’t a very good option if you are trying to incorporate massage into your pain management routine – unless maybe you used it at the very end of a massage. I will say that a little lotion can go a long way. For me, one or two small pumps was generally enough lotion to cover the area on my body where I wanted to focus. I think the pump is actually a great feature, as it allowed me to get exactly the quantity of lotion I wanted without having to waste any. And the good news is that I didn’t think it was too hard to push with my finger, despite my rheumatoid arthritis.

Of course, the ten-thousand-dollar question is this: does it actually help with pain? To be perfectly honest, there were mixed reviews on this subject in my house. I tried using Liberty Lotion to help with my joint pain, putting the lotion directly on my knees or wrists. I also tried rubbing it on my chest when I was dealing with a particularly bad bout of costochondritis (inflammation of the joint located in the rib cage). I found the experience to be generally relaxing, and overall I think the lotion had a good impact on my skin. Unfortunately, I didn’t find that Liberty Lotion made a huge deal of direct difference in my level of pain. Though, to be fair, I was dealing with rather high levels of pain. This was particularly true with the costochondritis, which I was having trouble controlling even with heavy medication. So that level of pain may have just been too much for any sort of topical treatment.

My husband, on the other hand, has found Liberty Lotion to be very helpful for his low back pain. He’s been asking me to help him rub it on his low back almost every night, and it really does seems to help him be in less pain. Though he does have some issues in his spine, I think a fair amount of his back pain is muscular – which makes me wonder if Liberty Lotion works better on muscle pain than it does on joint pain? All in all, I’m hoping to give Liberty Lotion another try when I am dealing with a less intense level of pain – that is if there’s any left at all when my husband gets done with it!

Friday, April 7, 2017

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
Location:  Boulder, CO
Diagnoses:  RA (rheumatoid arthritis)
Age at Diagnosis:  6

How are you currently treating your condition?
Enbrel and Arava
What are the biggest challenges you have faced since your diagnosis?
When I was a child, my RA was not very well controlled, as we cycled through many different treatments. I was able to get my symptoms under control when I started taking Arava at age 21.  My biggest physical challenges were definitely when I was a child.  As an adult, my biggest emotional challenges have been concern about the aging "infrastructure" of my body.  I recently had arthroscopic hip surgery, and it looks like that hip will be headed for replacement at some point.  

What are your favorite tips and tricks for managing everyday tasks?
Because my disease is well controlled at this point, managing everyday tasks is fairly easy for me.  If I do start to have a flare, it's important for me to address it quickly, typically with Prednisone. 


How do you manage to keep facing forward every day?
Staying physically active has been very important to me.  When I was a child, my parents shared their passion for the outdoors with me.  They brought me along on their adventures, tailoring them to my abilities.  This meant taking me backpacking and carrying me for parts of the hike, skiing slowly with me and only as much as I could, etc.  I now have the opportunity to share my passion for the outdoors with my children, which is extremely rewarding and provides additional motivation to keep moving! 


If you could go back to diagnosis day and tell your past self one thing, what would it be?
Because I was so young when I was diagnosed with RA, it didn't affect me the way it would an adult.  For me, it was just the way things were.  I try to carry this attitude forward when facing new challenges.  As an example, I developed OA in my foot a few years ago.  I was extremely upset about it.  After complaining to some friends about how I was feeling sorry for myself, a friend of mine said to me "Katie, even if you had no feet, you would find a way to do all the things you love to do!"  This is absolutely true. 

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