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.