Friday, December 30, 2016

Facing Forward: Valerie

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:  Valerie
Location:  North Carolina
Diagnoses: Fibroymalgia, CFS/ME, Hashimoto's Thyroid Disease, Raynaud's Disease, MTHFR gene mutation, IBS, Osteoarthritis, Scoliosis and Lyme Disease
Age at Diagnosis: I was diagnosed with Fibro, CFS, Osteoarthritis, IBS and Raynuad's disease in my late thirties. My Hashimoto's, MTHFR genetic mutation and Scoliosis diagnosis came just a few years ago and I was diagnosed with Late Stage Lyme Disease at the age of 43 this past March. I have been sick for nineteen years.

How are you currently treating your condition?
Lyme disease is difficult to treat and there are many, many options. Right now, I am under the care of a Lyme doctor who is treating me with antibiotics, tinctures, and supplements. A typical day of treatments consists of over fifty pills and tinctures which I take at various times throughout the day. It is a lot to handle, but I am hopeful to see improvements soon!

I am also taking supplements to support my MTHFR issues. I see a rheumatologist for my arthritis problems as they have become much more severe within the past year. I try to eat a gluten-free diet to improve my IBS and Lyme symptoms.

Since I homeschool my children, I try to rest when I can and not set my expectation levels too high! I have learned to pace myself and take frequent breaks.
What are the biggest challenges you have faced since your diagnosis?
When I was diagnosed with Lyme disease this past March, I was relieved to finally have a real answer as to why I had suffered so much over the past nineteen years. That relief was short lived when I realized that Lyme is not recognized in North Carolina by the CDC or main stream medicine. I have had to fight every inch of the way to get the treatment that I need.

It is equally difficult to explain my illness to my friends and family. They often struggle to understand what I am going through and that I am not able to do the things I used to do!

Treatment for Lyme is difficult at best. The treatments that have been prescribed for me, have made me sicker than I was to begin with. The common saying that you have to feel worse before you feel better definitely applies to Lyme disease treatments. I hope in time to see a real improvement.
What are your favorite tips and tricks for managing everyday tasks?
I have a terrible habit of pushing myself to the limit.

Learning to pace myself and take frequent rest breaks has been a real learning curve for me. If I fail to do this, I can count on being down for days. Pacing, as boring as it sounds, is my best friend. 

My mantra has become Rest to live and live to rest.
How do you manage to keep facing forward every day?
Being real and wearing the reality of the sickness I am fighting on my sleeve so to speak helps me to feel that I am not so alone. By letting those who are closest to me see the struggles that I face, they are able to help me when I need it the most.

My family is my biggest support system, I am so thankful for them.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back, I would go back nineteen years ago and ask to be tested for Lyme disease. Because I did not realize that Lyme is in North Carolina, I did not ask to get tested when I first got bitten by a tick! By waiting nineteen years, this disease has progressed to far beyond what it should have. It has permanently damaged my heart and nervous system. I am forever changed because Lyme did not enter the picture as a possible diagnosis for so many years!
Do you have a blog you would like to share?
I blog over at Lilacandlyme.com about my journey with chronic illness and the insights and lessons I have learned along the way. If you are interested in learning more you can connect with me there. You can also connect with me on Facebook, Twitter, and Instagram.

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

Friday, December 23, 2016

Facing Forward: Oren

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:  Oren
Location:  Sebastopol, CA
Diagnosis: Osteoarthritis, both knees, right thumb (so far).
Age at Diagnosis: 52

How are you currently treating your condition?
I had a right total knee replacement in February 2015, after an arthroscopic "clean out" surgery was unsuccessful and they found that I had an osteophyte that had torn up my meniscus (knee cartilage) and even had chunk of it speared like trash on one of those sticks they use to clean up parks.  

After the TKR, I worked my physical therapy very hard.  Because of my inability to exercise (and a job that required way too may hours and too much stress), my weight had ballooned, so I tried to walk frequently and watch my weight.  I had a three month off work recovery period and when I returned to work, I quit.  I saw that the job was a major impediment to my recovery and that it was a major factor in exacerbating my symptoms.

After my replacement knee was strong enough, I began to try to ride my bicycle again.  It had been quite a few years since I rode it seriously (that darned job and all).  I could only ride it on very flat trails and only for about three to six miles before I was physically exhausted and I needed to ice and elevate my replacement knee.  I knew I had to keep up with it, but it was hard.

September of 2015, I learned that a friend of a friend was riding his bike from San Francisco to Los Angeles.  I was intrigued and figured that having a goal like that would help focus my training and recovery.  It was something I could build up to in five or six years, or - more realistically - never.   Then I learned that it was to raise money to help fight arthritis.  I'd heard of charity bike rides for such causes as AIDS, lung cancer, leukemia, diabetes, etc.  I had even participated in some.  But I had never heard of an arthritis ride.  I took it as a sign from God (fate, or whatever) that I HAD to do the ride and right away. 

So, I signed up for the 2016 California Coast Classic (CCC) during the 2015 CCC.  I was committed. I was going to do the ride. I wasn't concerned about the potential of losing the $75 registration fee, I was concerned about the "loss of face" of not doing the ride, because I had told everyone I knew (and many I didn't) through Facebook.

I spent the next six months in dread and fear about not being able to do the ride.  I was in NO shape, whatsoever, for such an undertaking.  I would lie awake at night, unable to sleep, thinking "What in *#$*) have I done?!"  Meanwhile, I joined a local bike club and struggled to keep up with the slower riders on the easier rides.  Between riding 5-6 days a week and watching what I ate (having more free time meant that I could cook most of my family's meals and control what went into them), I steadily lost weight and gained strength and speed.  Six months in, and I was hanging with the faster riders.  A few months after that, and I was being chided by the other riders for being too fast and too strong.

In preparing for the CCC, I rode 7,180.5 miles and lost some 90 pounds.  That led to strengthening my replacement knee, but the arthritis in my left knee continued to progress.  It's been a balancing act between the progress of the disease and the relief I have from weighing a lot less, thus putting a lot less stress on my knee.  Because it doesn't involve full extension, I can - with care - ride for long distances without left knee pain.  However, I can only walk a few blocks without limping and pain.

The 2016 CCC, itself, was a challenge, but I was more than physically ready for it.  It was a great joy to see everyone working so hard to help fight arthritis.  I signed up for the 2017 CCC, too. 

I know that the CCC raises lots of money that does lots of good for lots of arthritis sufferers.  I know that it did lots of good for this arthritis sufferer. 
 
What are the biggest challenges you have faced since your diagnosis?
See above.

What are your favorite tips and tricks for managing everyday tasks?
 I ride my bike to feel better and to lose weight and get in shape.

How do you manage to keep facing forward every day?
Like there's a choice.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
It's time to change your life around.

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

Tuesday, December 20, 2016

New FDA Pregnancy Labeling Standards – Not As Boring As It Sounds!!

The FDA has new rules concerning how medications are labeled for use during pregnancy and breastfeeding!

Maintaining a Healthy Sex Life With RA

I'm always excited when I get offered an opportunity to write about RA and intimacy. I may not always have anything particularly new or exciting to say, but every chance I have to bring more attention to the subject is another opportunity to reach someone who feels like they are struggling all alone. And the more confident patients feel requesting help with sexual issues, the more likely healthcare professionals are to provide it.

So check out my newest guest post for NewLifeOutlookRA!

Monday, December 19, 2016

“Sex and Intimacy in Chronic Disease” at the 2016 American College of Rheumatology Annual Meeting

While RA patients may want to ask their healthcare providers for advice on issues like pain or fatigue, the subject of sex can often be difficult or uncomfortable for patients to bring up.

Friday, December 16, 2016

Facing Forward: Lene

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: Lene
Location: Toronto, Canada
Diagnoses: Juvenile arthritis, fibromyalgia, migraines
Age at Diagnosis: I was 4 when my juvenile arthritis started, but wasn't diagnosed until I was 9 years old. I've had migraines since my teens, and developed fibro in 2004.

How are you currently treating your condition?
I'm primarily using a biologic to treat my JA and miracle of miracles, it is working! There were no treatments for the disease for most of my life, so it's astonishing to finally experience what it's like when something works. Because it's taking care of my autoimmune arthritis, my fibromyalgia is quieter than it was when things were active. It is still there, though. I mostly treat that with a variety of painkillers and muscle relaxants. I also try to meditate, but I'm bad at remembering to incorporate it in my every day. I've used a variety of alternative treatments throughout my life, but as things are pretty good right now (knock wood), there is less need for that. I see a doctor of naturopathic medicine several times a year, though. 
 
What are the biggest challenges you have faced since your diagnosis?
Over the last 50 years, there have been quite a lot, but if I think in terms of the absolute biggest, there are two. One is having to use a power wheelchair since I was 16. Because there were no treatments when I was growing up, the disease wrecked every part of my body. Starting to use a wheelchair was actually liberating - I'd spent the previous two year lying in a hospital bed waiting for custom-made hip replacements. When I was 16, I had both hips replaced and that enabled me to sit up again, go home, and create a life. Still, having a disability is one hell of a challenge in a world that is made for the able-bodied.

The second of my big challenges was the big flare I had in 2004. It was the second time my autoimmune arthritis tried to kill me and that time, it came pretty close. The flare burned so high and so bright that the only way I could see out of it was to commit suicide. I gave myself a deadline, but thankfully the funding for Biologics came through first and the medication worked.

Come to think of it, there's been an additional challenge. Earlier this year I got the flue, which thanks to my asthma (forgot to mention the asthma) turned into pneumonia, which turned into something even nastier. I spent a long time in the ICU on a ventilator in an induced coma, and had to have an emergency tracheostomy. That itself was a challenge, but recovering has been quite difficult, as well, especially the emotional aftereffects.  

What are your favorite tips and tricks for managing everyday tasks?
Reachers are an essential part of my life, but not the ones made in North America. The fact that you have to squeeze the handle in order to keep the grabbing tongs closed is completely ridiculous when you consider that someone who needs a reacher likely has dexterity or strength issues. I've found this fantastic reacher that is made in Sweden, but can be found for sale in the US. You squeeze the handle to open the tongs and they stay closed when you let go! It's significantly more expensive than the North America-made reachers, but very durable and well worth the money.

I also use forks for a lot of things besides eating. They are excellent for opening Ziploc bags (stick the tines in between the interlocking plastic to create a gap), as well as pop cans. And I take a nap every afternoon. Without it, my pain levels would be skyhigh. To avoid people making ignorant comments about how nice it must be - because we all know that a nap is not an indulgence when you have a chronic illness - I call it my mandatory rest period.

How do you manage to keep facing forward every day?
The big flare I had 12 years ago taught me a lot. Getting my life back was a miracle, a second chance that I take seriously. I decided to stop pretending to be doing better than I actually was and find a way to be the person I'd always wanted to be. I work hard to look at what I can do, rather than what I can't, and to find the positive in every day. Living authentically and focusing on joy is hard work, but I am so much happier now than I've ever been, even though I in many ways am more limited than I used to be. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Cry as much has you need to cope. And know that you can cope with this and have a good life. 

Do you have a blog you would like to share?
The Seated View

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

Wednesday, December 14, 2016

Rheumatoid Arthritis in America 2016 National Survey

Rheumatoid Arthritis In America 2016 is a national survey of more than 3,100 individuals who identified as living with rheumatoid arthritis (RA). The results this year's study show that initial symptoms are often invisible to others and that receiving an accurate diagnosis can often prove difficult for patients. 

Ok. I know these results seem almost hilariously obvious to those of us actually living with RA. (Anyone else a child of the 90s and have the undeniable urge to shout "no duh!"??) However, this study is important, because having data to back up the invisible realities we face every day is key to helping us be better understood - both by our healthcare professionals and by our friends and families. 

If you'd like to learn more about the study, you can read the rest of the press release (including a quote from yours truly!) on EurekAlert! The Global Source for Science News.  I'll also include the infographic with an overview of the study findings below! Maybe consider sharing it with your friends and family members who are having trouble understanding what you are going through? And/or use it as a reminder that you are not alone!




Friday, December 9, 2016

The Ups & Downs of Chronic Illness – And How I Learned To Embrace The “Ups”

Life is full of highs and lows. But when you’re living with a chronic illness, the “down days” can be much lower than you expected. Knowing this, how can you enjoy the positive moments when there’s an inevitable low point in your future? 


Facing Forward: Kali

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:  Kali
Location: Westerville, Ohio
Diagnoses:  Ehlers Danlos Syndrome hypermobility type, chronic migraines, muscle spasms, Fibromyalgia, Meniere’s Disease, Asthma, Chemical Sensitivity, IBS, Heart Murmur, POTS, Psoriasis
Age at Diagnosis:  The Chronic Migraines, Meniere’s disease, Asthma, Chemical Sensitivity, EDS and Heart Murmur I have had since I was born. As I’ve gotten older and unfortunately sicker I started getting the muscle spasms, Fibro, IBS and Psoriasis. The muscle spasms and Fibro I started getting when I was about 16 or so. I’ve had a few nasty falls and that probably has contributed to my Fibro and muscle spasms. But the EDS is probably also a very large contributing factor to my pain. The IBS, Psoriasis and POTS are more recent diagnoses though. The POTS diagnosis I’ve only had for about a year and a half. The IBS and Psoriasis I’ve only been officially diagnosed with for a couple months.

How are you currently treating your condition?
For all of my illnesses I’ve chosen to go for the pharmaceutical approach. Though for a very long time I tried to cope with my illnesses by trying to ignore them. After awhile I was no longer able to ignore my illnesses I started trying OTC meds and vitamins, which do help somewhat. But after being sick for so long I finally started seeing the appropriate physicians to receive treatment. That has resulted in me taking a grocery list worth of medications. I have to make a spreadsheet to remember when I can pick up which medication. 

 
What are the biggest challenges you have faced since your diagnosis?
My number one challenge that I face with my diagnoses is actually being believed that I’m 21 and I take as many meds as an eighty year old. And being believed that I do have as many chronic illnesses as I do, that I’m not falsifying anything. Another big challenge is what a lot of us face, using a wheelchair in public places such as the mall. 


What are your favorite tips and tricks for managing everyday tasks?
 I spend probably about 85% of my time in a classroom because I’m in nursing school, and I’ve learned to basically use the wheely chairs in the classrooms as a way to get around. And I always recommend that people have a filtering water bottle with them when they go out. It’s good for keeping your water intake high and you don’t have to pay for water. 
 
How do you manage to keep facing forward every day?
I keep moving forward because I have to, I’m in nursing school and I will get my degree if it kills me. And just because I’m sick I don’t want to give up my dream. I feel like I give a unique perspective to becoming a nurse, I’ve experienced the medical field from both sides. I’ve been a patient and I know how I want to be treated when I’m in a hospital. And I will be a nurse so I will be able to better relate to people and their struggles. 

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

I would tell myself that being chronically ill isn’t the end of the world. That it will actually make me a better person. And give me opportunities to teach people about things that they might’ve never seen or heard of in their life. I would tell myself that I will become an advocate and a teacher.
 
Do you have a blog you would like to share?
This Spoonie Speaks


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

Friday, December 2, 2016

Facing Forward: Chelsea

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:  Chelsea
Location:  St. Paul, MN
Diagnoses & Age: Asthma and allergies at age 1; Alopecia areata at age 3 which morphed into alopecia universalis at age 28; Fibromyalgia at age 24; Hashimoto's at age 31; unknown CSF problem (still undiagnosed) at age 36; mast cell activation disease at age 42.

How are you currently treating your condition?
Treatment includes a cocktail of supplements and medications that add up to about 45-50 pills a day. I also have a shunt in the left hemisphere of my brain that most recently failed 17 days after it was implanted in May of 2015 (my 10th in less than 4 years); the hope was that it would help to move fluid that seemed to be getting caught around my brain stem, but my body does not like to have foreign objects implanted in it, so it strangles and/or clogs the shunts. I also attend mental health counseling sessions every other week. I get monthly massages because I have to lay flat to relieve the pressure in my brain but it makes my fibromyalgia go nuts. And every day that I am able to (if I'm not fighting a cold or infection, like now), I sing. My neighbors in my apartment are lucky I'm not tone deaf because I'm certainly not shy. 
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge since being diagnosed for my MCAD is figuring out exactly what will trigger it, including food dyes, detergents, and temperature. My doctor said that even certain vibrations may set me off! Every day gets me closer to being called back to the mother ship, I swear. As far as the mystery CSF problem goes...well, I don't have a diagnosis, so that's a huge problem. I didn't know doctors could tell me to go away and not come back. I didn't know the Mayo Clinic could tell me not to walk through their doors because I am "too rare to diagnose or treat" (and therefore bring down their stats showing their success rates). I am still trying to find a neurosurgeon and neurologist in Minnesota who will take me on and I've worked my way through every healthcare group in 16 months and I'm not allowed to go out of state. I'm now working with a non-profit group that is trying to advocate on my behalf to see if they have any sway. 

What are your favorite tips and tricks for managing everyday tasks?
I am not sure if I have favorite tips or tricks, but I make sure I limit myself to one chore a day, not multiple chores. Of course this is nearly impossible if you have children or pets. They keep you on your toes constantly. I have neither, so that's the only reason that rule works in my world.

How do you manage to keep facing forward every day?
Whenever I have particularly rough days, I watch videos of babies laughing and animals being goofy. And again, I sing. What my neighbors must think!

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 to take that backpacking trip across Europe. Though I have made it over to that continent to visit friends three times, I should have done the hostel, no-shower, wash-your-underwear-in-the-sink trip when I was 19. I would have also told myself not to be so hard on my younger body and hate it so much. I would love to have that body back.
Do you have a blog you would like to share?
My blog is The Sick and the Dating. It does have an adult theme and adult language because I am an adult, but not every piece is rowdy.

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

Monday, November 28, 2016

Chronic Christmas: Surviving the Holidays with a Chronic Illness

My friend Lene Anderson has just released a new book - an Advent calendar of tips for a sane holiday season for those living with chronic conditions. One of my favorite features of this book is that it also offers suggestions for how loved ones can help!

You can get your own copy of Lene's book by clicking below (Affiliate link - every little bit helps Santa put those presents under the tree!!)

Friday, November 25, 2016

Facing Forward: Kami

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: Kami 
Location: Oregon
Diagnoses: Chronic Lyme Disease, POTS, Chronic Fatigue Syndrome, Mold Illness, MTHFR Gene Mutation
Age at Diagnosis: 27

How are you currently treating your condition?

Lyme disease has a multitude of treatment options due to it's complexity and how differently each patient can respond to treatment. I am currently following an all-natural treatment protocol under the supervision of my Lyme specialist. In addition to my Lyme treatment I am treating mold illness and supporting my body's MTHFR gene mutation. Part of how I support my current treatment is through regular detox routines, eating a very low carb diet, and doing what I can to listen to my body's signals for rest.
 
What are the biggest challenges you have faced since your diagnosis?

I think the biggest challenges for me have been navigating the responses from people on the outside. How doctors, friends and family view my illness, believe my symptoms and the ways they are willing (or not willing) to support and connect with me. It's definitely been a learning experience, figuring out how to balance caring for my body and maintaining relationships when my life has been so completely transformed by chronic illness.

What are your favorite tips and tricks for managing everyday tasks?

The word I find myself coming back to time and again is balance. It is so easy to push ourselves to our breaking point simply by trying to stay on top of our treatment schedule alone! One of the things I've been trying to implement more this year is setting timers, alarms, reminders for anything I need help prioritizing. Whether it be rest, blog work, treatment, detox practices, or self-care I am finding that this is a helpful tool for curbing my tendency to over-do it!

How do you manage to keep facing forward every day?

My view on this may not be popular opinion, but it has been vital to my ability to face each day of illness. I think we can place so much pressure on ourselves to always "stay positive", overlooking the very need of (and health found in) allowing ourselves to process the hard. In giving myself the space to feel the natural emotions that come with sickness and in talking with others who understand this life as well as a good counselor, I'm able to embrace healing and comfort along this difficult path. It also helps me to further connect with my readers and hopefully encourage them to find their own healthy balance in order to face each one of their difficult days.

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

If I could go back, I would most likely be going back to my original misdiagnosis of Multiple Sclerosis. I would encourage myself to do more research, to read other stories of people who were diagnosed with MS as I'm sure I would have come across someone who, like me - was actually fighting Lyme disease all along. I would remind myself that I know my body better than any doctor or outside source, that my health is my priority and therefore if I have concerns or questions it is my responsibility to keep searching for answers. I totally understand why I trusted my original doctor. We have been taught to put our trust in them, to expect them to know exactly what is going on. However after being diagnosed with and treating Lyme disease, I know that it's frequently misdiagnosed and vastly misunderstood by the medical community. Doctors are an amazing resource and can be so helpful - but we will always have more of a vested interest in our health and care.
Do you have a blog you would like to share?

I currently blog over at Living Grace about living with chronic illness and all the things that intersect with this life: marriage & relationships, self care, treatment and detox, grief and community. If you'd like to connect more you can find me there!

You can also find me on:

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

Monday, November 21, 2016

Chronic Illness Bloggers Holiday Giveaway!

You may have seen mention of the Chronic Illness Bloggers Network in some of my previous posts, as the network has given me the opportunity to receive and review quite a few useful products. Today I'm excited to share that the network has put together a holiday giveaway to give a some lucky readers a chance to win some of these products too!

The giveaway will run from November 21st through December 3rd. There are 11 prize packs, each with a value between $400 and $600. Winners will be selected at random. (Please note: two of the prize packs can only be shipped to US addresses. If a non-US-based winner is chosen for one of these prize packs, the winner will have the option to have the prize shipped to a US address or forfeit the prize). 

Prizes include several things that I have talked about on this blog:
To check out the details of each prize pack and to enter the giveaway, please head over to:


Friday, November 18, 2016

Facing Forward: Marya

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: Marya
Location: Tampa Bay
Diagnosis: Cervical Dystonia
Age at Diagnosis: 48

How are you currently treating your condition?
Xeoman shots (form of Botox) healthy living including yoga, clean eating, heating pads, massager, therapy pool when I can, and stress management.
 
What are your favorite tips and tricks for managing everyday tasks?
Give myself plenty of grace and margin. Don't overload with unrealistic expectations.

How do you manage to keep facing forward every day?
I have to keep going for my family but ultimately it's my faith in God - I have to trust His plan and provision no matter what.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Hang tough...It's going to be okay.

Do you have a blog you would like to share?

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

Friday, November 11, 2016

Arthritis Foundation Conference of Champions

Last week I was very lucky to have the opportunity to attend the Arthritis Foundation Conference of Champions. It was very empowering to get to be among so many committed and enthusiastic advocates, and to learn more about what the Arthritis Foundation achieved over the past year - and what they hope to achieve in the future.

Michael Ortman, Arthritis Foundation Board Chair, set the stage for the Conference by placing an empty chair next to the podium and reminding everyone that the Foundation always needs to be serving the patients who are actually living with arthritis - and their families. President and CEO Ann Palmer shared the results of several Arthritis Foundation studies conducted in the last year, emphasizing the reality that arthritis is more than just physical pain and highlighting that these other impacts also need to be addressed. The speakers worked to inspire the audience to raise the bar for future advocacy and fundraising efforts.

Unfortunately, I wasn't able to attend the Evening of Honors, so I missed seeing my good friend Colleen Ryan being awarded the Charles B. Harding Award for Distinguished Service to the Arthritis Foundation. Colleen's daughter (who is now in college) was diagnosed with juvenile arthritis at the age of 3, and since that time the Ryan family has worked tirelessly to support people living with arthritis. Their fundraising team is The Princess Parade, and Colleen's husband was the one of the wonderful friends who so graciously set up our tent every evening as I struggled through this year's California Coast Classic. (In fact, it was through Colleen that APL & I originally learned about the CCC). The award is highest that the Arthritis Foundation gives to volunteers, and it could not have gone to a more committed and deserving person. Colleen is someone I look up to as a mother and a leader, and I'm truly honored to consider her and her family among my friends.

I did get to return to the Conference the following morning to hear from the Arthritis Foundation's Senior VP of Scientific Strategy, Guy Eakin. He explained that the Arthritis Foundation's scientific strategy is driven by patient voice and feedback. He also provided an overview of four bold initiatives going forward: (1) cultivating a new generation of rheumatologists, (2) advancing osteoarthritis treatment, (3) conquering childhood arthritis, and (4) improving quality of care from the patient's perspective.

After some round table discussions (where I learned about some Arthritis Foundation resources I hadn't previously known about - more about that in a future post!) I was able to stay for the "Recognizing our Champions" Awards Lunch. I was honored to get to cheer for some of the amazing people who are raising hundreds of thousands of dollars to help people living with arthritis. I was especially honored to get to cheer in person for the California Coast Classic - the largest Arthritis Foundation fundraiser in the country that raised over a million dollars this year!!

It was very inspiring to see and hear from people all over the country who are committed to improving the lives of people living with arthritis, and I hope that I am able to continue my volunteer efforts with the Arthritis Foundation going forward!

Facing Forward: Melissa

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: Melissa
Location: Wisconsin 
Diagnoses: fibromyalgia, SEID, myofascial pain syndrome, chronic fatigue syndrome, IT Band Syndrome, Anxiety, Depression, IBS, allydonia, migraines, photophobia, TMJ, sciatica, ADD, sleep maintenance disorder, sciatica, degenerative disc disease, mild scoliosis, arthritis, SAD
Age at Diagnosis: Anxiety/Depression - early 20's, The rest of the syndromes/conditions began around the age of 39.

How are you currently treating your condition?
I have found a good balance of prescription medicine and vitamins. They are; Methocarbamol, Gabapentin, Nortriptyline, Citalopram, Adderall, Clonazepam, Tramadol, Vitamin D, Magnesium, Probiotic, Vit. B, Multi-Vitamin. It is important to keep moving. I attend aqua aerobics twice a week. In addition, once a month I go to chiropractor and acupuncturist. 
 
What are the biggest challenges you have faced since your diagnosis?
In the beginning it was accepting my limitations. I still have to remind myself that I can do only what I can do. I can't volunteer or participate in every school activity. I had to learn to allow myself to stay home when my body is telling me that it needs rest. It was a difficult time when every time I went to the doctor I was receiving another diagnosis and treatment. 

What are your favorite tips and tricks for managing everyday tasks?
It is important to have a sleep routine and stick to it. Emotionally it is good to find a support group that you feel comfortable sharing and asking questions. Keeping a daily routine and balancing your activities with rest.

How do you manage to keep facing forward every day? 
My daughter is my biggest reason to keep fighting. Also, I found that using my love for writing and helping others helps keep me positive and determined  not to give up. I started by beginning a Facebook page & Blog (Fibro Warriors ~ Living Life)offering positive encouragement, medical information, resources, and support to others. I  am a co-leader for a group in Minnesota and leader of an online support group. I was very fortunate to be chosen by the National Fibromyalgia & Chronic Pain Association to be a member of their advocate group, Leaders Against Pain. I write for ProHealth.com and am an active member of the Chronic Illness Blogger group. My most recent project was publishing my first children's book, Ravyn's Doll: How to explain fibromyalgia to your child. I have been reading the book to preschool & elementary children. It has been an amazing hearing stories from others about how the book has helped children not just understand  fibromyalgia but how to treat/help others with/without invisible illnesses.  It gives me hope.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
There are going to be hard days when you wish your life was over but you will survive those days. You will learn that you are stronger than you think you are and like your Dad says; "you will make lemonade out of the lemons". 

Do you have a blog you would like to share?
Fibro Warriors - Living Life

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

Friday, November 4, 2016

Facing Forward: Michelle

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: Michelle
Location: Hamilton, Ontario, Canada
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: 35

How are you currently treating your condition?
I am treating my condition with methotrexate, Humira, and also narcotic painkillers when needed. I am a believer in of the benefit of clean eating which helps my energy. The most important tool I have besides my medications is meditation. I have been practicing meditation and as an extension, mindfulness, for about 6-8 months. It has completely changed my viewpoint of my disease and what it means in my life. It helps me deal with pain and keeps my emotional state in balance since I also suffer from depression and anxiety disorders.
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenges I have faced since diagnosis would have to be pain first. My RA onset was rapid and severe after my second pregnancy, affecting approx 20 joints in my body. The pain brought me to a very bad mental space. I hated life and I couldn't imagine living with the pain of this disease. I felt guilty and angry about being a mom because it required so much pain from me to do anything and I was so so angry at my husband for anything he did. I had to use a wheelchair to get around at times and couldn't change my baby's diaper. The mental health aspect of being diagnosed and living in pain was extremely difficult, and made my depression and anxiety spiral out of control for a while.

A second big challenge was navigating the health care system. In Canada with universal health care, I am lucky that my doctors visits, monthly bloodwork, and procedures are covered. Drugs are not. So I had to jump through hoops with my insurance company; trying 3-4 standard DMARDS as per their protocol before moving on to a biologic, even though my doctor and I both knew with my prognosis I would need a biologic to get this under control. But given their cost I needed the coverage because I wasn't able to return to working. When I finally got the Humira (thanks to the drug company who covered the cost for several months while my insurance caught up) it was life changing. Finding the right med balance for relief was also a challenge. The first year after diagnosis was a huge challenge in general. Some days I'm amazed I made it through. It seems like a dream now. I still have bad days and parts of each day, but I have tools now. My RA isn't wildly out of control anymore.

Energy is just a huge challenge in general. I struggle with it every day. Brain fog and lack of energy are 2 of my least favorite things in the world.

What are your favorite tips and tricks for managing everyday tasks?
- Rest every day. Find times in your day to rest your body and prioritize them. It gives me energy to do the things I need to do. 
- Hot Epsom salt baths are a lifesaver for stiffness and pain. Basically any time I need to do something physical or that requires energy and stamina (like shopping or a theme park) I take a bath first! 
- Meditation can help you strengthen your mind and aid your ability to work through pain 
- When others are around, like my mom or husband or brother, I let them do the physical tasks. I do as little as I can when I can and conserve my strength for when I need it 
- Exercising every day helps so much, mentally and physically. I couldn't do it when I was in the midst of diagnosis and early disease but now that I can I make sure to move my body every day even it's just a walk for 15- 30 minutes.

How do you manage to keep facing forward every day?

I manage to keep facing forward everyday because I know that nothing lasts forever. As odd as that sounds, I know each flare will pass, each challenge will be met. I know the clouds will pass and that the blue sky is always there underneath. So I just try to hold on for the ride and keep facing forward.

I have an amazing family. A husband who is beyond supportive in every way and 2 daughters who are sensitive to my needs and fill me with joy. They keep me facing forward. I also have an excellent support network in my parents, brother, and a few close friends. They help me as often as they can and I love them for it.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back to diagnosis day I would tell myself to not get swallowed up in despair. To believe in my strength, and believe that I can handle this, that I will find meaning in it and own it and be better for it somehow. Because I did all of those things and am proud of who I've become on the other side.


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

Thursday, November 3, 2016

A Profile of Mariah Leach: Mom, Blogger, Bicyclist

I'm excited that I recently had the opportunity to chat with the amazing Lene Andersen, author of The Seated View, about my experiences riding in the California Coast Classic. Her main question was a great one: why?!?! 

What I Be

While I was at the 2016 Joint Decisions Empowerment Summit in Philadelphia a few weeks ago, I had the opportunity to participate in Steve Rosenfield's "What I Be" project. The project is a social experiment that encourages participants to put their biggest insecurity out in the open and expose a side of themselves that no one sees. Participants then make a statement: "I am not my _____."

As you may be able to glean from my image, my biggest insecurity is asking for help. But, when Steve asked me to explain why I don't ask for help, I have to admit was sort of at a loss for words. There are so many reasons that it is difficult for me to ask for help - and I found I couldn't possibly explain them all in the 15 minutes we had to take my photo. The simplest explanation we were able to come up with is that I don't want help - and so we settled on: I am not my pride. And there is absolutely some truth to that.

But, in reality, the reason I have trouble asking for help is a lot more complicated than simple pride.

I don't want help.

I hate that I so often need help.

I don't actually realize I need help until it's too late to ask.

It's uncomfortable to ask for help.

I feel guilty for needing help in the first place.

There isn't anyone to ask for help.

It takes more energy than I have to find someone I can ask for help.

I tried asking and nobody listened.  

I recently asked and it feels too soon to ask again.

People expect you to only need help in special circumstances, not all the time.
 
Everyone assumes I look fine so I don't need help. 

I think this list could probably go on and on. Because the reason I find it difficult to ask for help is a lot more than simple pride. It's also guilt. Exhaustion. Anxiety. Frustration. Habit. Self doubt. Fatigue. Resilience. Endurance. Strength. Lack of any other option. The simple reality of living life with an illness that never, ever goes away. Because the truth is that people living with chronic illnesses are some of the most likely to need help - but often the least likely to ask for it.

I don't really like this picture of myself. To my own eyes my face looks exhausted and drawn, but I guess that's sort of the point. I look like someone who could use a little help, and the words on my face make that clear. So I want to share this image to remind myself how important it is to try to ask for help when I need it - and I hope that by sharing I can remind others who are struggling that it's ok to ask for help too. 

(If you'd like to see the images from the other Joint Decisions participants, you can check them out here.)