Friday, September 30, 2016

Facing Forward: Nicole

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: Nicole
Location: Miami, Florida
Diagnosis: RA and COPD
Age at Diagnosis: RA at 17, COPD from birth

How are you currently treating your condition?

I have always had a challenging medical life.  From the time of my birth, doctors have been writing prescriptions, agonizing over text results and placing limitations on my life.  My lung condition is unique and is currently being treated as Emphysema.  Thankfully, I live a very normal life style and do not need oxygen.  I was told I would need a lung transplant by the time I was 24, but here I am at 33 and still no transplant has been needed!  I can’t attribute any of this to my own lifestyle choices… I am not a great patient. But I have faith that God is the only one that has sustained me all these years.
The tricky part has been that RA and Lung Disease are not a great combo.  RA meds suppress my immune system and then I am more prone to catching viruses which immediately affect my lungs. I have tried ALL sorts of RA treatments over the last 15 years (Prosorba [which isn’t even FDA approved anymore], Remicade, Kineret, Enbrel) and they have either not been effective, I’m allergic, or I get sick too often while on it.  For the FIRST TIME in 15 years I have found the biologic that is working so so so great that I actually FORGET that I have RA (some days).  I’ve been on Rituxan for 2 years now and I’ve never felt better!  As I said before, I’m a horrible patient.  I’m a little rebellious, which I attribute to being sick my whole life and being so over it that I can’t even.  I just choose not to take my medication, even though I know it’ll backfire.  I know it’s not smart and I have an internal battle about it, but c’est la vie.  This is why Rituxan is working for me… because I only have to take it every SIX months and since it’s an infusion with an appointment, I don’t miss it.  I’m finally controlled!  I also take Methotrexate (not as strictly as I’m supposed to).  
 
What are the biggest challenges you have faced since your diagnosis?

The first 3 years after my diagnosis were the very worst.  I went from being a perfectly normal teenager to feeling like a 90 year old.  I couldn’t stand up after sitting on the toilet.  I couldn’t stand up onto a curb.  I couldn’t wash my hair. I had dreams of moving to NYC to sing, and all of that was stripped away.  I knew there was no way I could tackle a big city like that all on my own with this disease.  My whole world became limited.
I became destructively angry, so on top of having physical damage, I was self imposing emotional damage as well.  It was a dark time… my very own “dark ages”.
I have endured many other challenges and physical limitations since then as well.  Daily living is a challenge!  Motherhood is a challenge!  When my kids were babies, they were walking everywhere as soon as they could… Mama could not carry them around when they were 25 pounds!  I don’t get on the floor to play with my kids.  I don’t kneel down to get to their level to talk to them.  I don’t ride bikes with them or kick around a soccer ball.  I don’t go to the zoo.  I can’t attend a fun field trip because I know it’ll be an entire day walking and that I’ll pay for it.  My children know that I have limitations and it breaks my heart.

What are your favorite tips and tricks for managing everyday tasks?
As moms, wives, and women we have a lot of things that need to get done.  Laundry, dishes, cleaning, homework, work.  First of all, I have taught my kids to help me.  My kids know I am sick… and they know that they have to help me.  We are a family and family helps because family loves.  I have empowered my kids to do housework from the time they were itty bitty.  Now, at 6 & 7, they empty dishwashers, do laundry, pick up around the house, carry in groceries (even the heavy bags), and help dad with home improvement projects. By doing this, I’m not only helping myself, but I’m also training them up to be responsible, helpful and self-sufficient men.  Our world needs more of those.
Secondly, I’m honest.  I have REAL limitations.  I’m not being a big baby.  I can’t “suck it up.”  I’m not exaggerating.  I’m not being a drama queen.  When I need help or I’m just done for the day, I say so.  I am not going to try to be a martyr and push through the pain when I know it’ll only make things worse tomorrow.  
Considering we all have a certain amount of “spoons” available for each day, it’s important for me to prioritize what I really need to spend my spoons on.  I weigh all the things on my “to-do list” and determine which are worth spending spoons over.  I also try to give myself a day to just chill, kick back, binge on Netflix, and talk on the phone for a few hours.  My body needs that, but so does my mind and soul.  

How do you manage to keep facing forward every day?

I have been blessed to have the most amazing and supportive husband.  He has known me since I was a teenager, so he saw me go through my diagnosis and dark ages.  He has seen me at my worst and my best.  He understands my limitations and never pushes me or guilts me.  He takes such good care of me.  
Most importantly my relationship with God keeps me facing forward.  I have been angry with Him.  I have done the whole “WHY ME, GOD?!” thing.  But He keeps teaching me every day that He has great plans for me.  That it is because of Him that I am able to do anything at all.  He has shown me that He constantly chooses the weak and broken to do His greatest work.  He is made known by my weakness.  I can only give Him credit for all the good in my life.

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

Your life isn’t going to turn out the way you dreamed it would.  This will change everything.  BUT there is something better waiting.  Don’t lose hope.

Do you have a blog you would like to share?
I don’t blog anymore, but when I did, I wrote about my RA journey back in 2012… you can find it here.

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

Friday, September 23, 2016

Facing Forward: Christina

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: Christina
Location: New Jersey
Diagnosis:thoracic outlet syndrome, occipital neuralgia, chronic migraine
Age at Diagnosis: 22 (chronic migraine); 27 (occipital neuralgia); 28 (thoracic outlet syndrome)

How are you currently treating your condition?
Currently, I’m taking daily Celebrex, Verapamil, Vitamin D, and Magnesium. I also take Imitrex injections as needed for my migraines.
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I’ve faced since diagnosis is being able to treat my frequent migraines while avoiding Medication Overuse Headache. I need to stay functional in order to take care of my son, and my migraines place a limit on that. I find myself having to ration medication for days when we have plans. I also found it challenging to manage breastfeeding while treating my chronic pain at the same time. In retrospect, I wish I had put less pressure on myself as a new mom.

What are your favorite tips and tricks for managing everyday tasks?
I have found that taking my Celebrex later in the day (around 11 AM) helps me function better throughout the day than when I take it first thing in the morning. That way, the effects of it aren’t wearing off as much by bedtime, which is when I take my second dose.

The other helpful modification I’ve made to my life is to use a stand-up, height adjustable desk. I can’t sit in one position for long, so being able to sit and stand as needed has helped prevent pain while I work.

How do you manage to keep facing forward every day?
My son and my husband are my inspiration to stay strong. I also write and manage a blog for mothers with chronic pain. Writing is a great healing tool, and being involved in creative pursuits helps keep my mind off my pain. I love being an advocate for other moms with chronic illness, too.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would tell myself not to hesitate to start on treatment. At first, I didn’t want to treat my chronic migraines with drugs, and I tried every alternative treatment I could find. I wish I had allowed myself to start on medication sooner. I’m not saying that some people don’t find relief in alternative medicine, but it many cases, medication is warranted, and I shouldn’t have let myself suffer for as long as I did.

Do you have a blog you would like to share?
Yes, my blog is called Mothering With Chronic Pain. Follow Moms With Pain on Twitter or Facebook.

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

Friday, September 16, 2016

The #ChronicSex Movement – A Safe Place to Discuss Self-Love, Relationships, and Sexuality with Illness and Disability

Despite the seemingly obvious link, I’ve always been surprised that the issue of sex and RA seems to be that thing no one talks about. The #ChronicSex Movement is a safe place to discuss self-love, relationships, and sexuality with illness and disability.

Facing Forward: Lisa

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: Lisa
Location: Bloomfield, Colorado
Diagnosis & Age at Diagnosis: Ulcerative Colitis, age 30. Pancreatitis, age 26. Degenerative Disc Disease, Age 36. Osteoarthritis, age 36.

How are you currently treating your conditions?
I take medicines for flare up for the UC. I also try to watch what I eat. If I eat a lot of fried food, I have issues. I do not take NSAIDs as that flares it up too. For the Pancreatitis, I do not drink any alcohol and watch my blood sugar all the time. I have to be careful so that I don't become diabetic. For the DDD and osteoarthritis, I have to be careful with how much I do on one day. I have had 4 surgeries for the DDD, so that limits me on how much I can do anyways. I can't bend over to pick things up and I have to have help with things like tying my shoes sometimes. I really try to listen to my body and do what it tells me to do.
 
What are the biggest challenges you have faced since your diagnosis?
Trying to be a mom of an autistic child, a mom to a 10 year old, and a Police officer's wife all while trying to take care of myself properly. I tried so hard in the beginning not to "look" disabled, and now I realize that if I am being what my body tells me to be, I am disabled and that's ok.

What are your favorite tips and tricks for managing everyday tasks?
Self-help is so important. The more you are an advocate for your body, the better it will treat you. I try to listen and do what it is telling me, like drive in the car instead of walking to pick my daughter up from school. Soak in a bath tub when the joints are stiff and hurting. Heating pad when the weather changes and the metal is cold. And most of all, get as much sleep as my body says so.

How do you manage to keep facing forward every day?
My family helps me get through the really bad times. I wouldn't have made it this far without them, especially my husband who helps me out so much every day. I try to be as positive as possible and know that there will be crappy days. I just face those head on and fight my way through them.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I will be ok and it's ok to be scared. I am a fighter and I would tell myself to fight like hell and make every day count.

Do you have a blog you would like to share?
My blog is Pain, Love, Hope. It is all about the pain of having chronic pain, things I love, and hope for tomorrow.

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

Thursday, September 15, 2016

How to Entertain Kids When You’re Not Feeling Well

Keeping kids safe, clean, fed, and entertained can be exhausting – even when you are feeling your best. So how do you manage when you’re sick? 

Here's 6 ideas I came up with that might help! Read more at Mango Health!


Joint Decisions Blogger Spotlight: Access & Affordability Insights for RA Treatments


According to the Milliman Medical Index, in 2016 the cost of healthcare for an average American family of four covered by a typical employer-sponsored preferred provider organization (PPO) plan will be $25,826. The average family will also spend $4,270 on prescriptions this year. However, the key word when considering these statistics is this: average. In reality, some families will spend significantly less, and some families – like the ones where one or more family members live with a chronic condition – will spend significantly more.

I am the mom of an actual American family of four, and my diagnosis of rheumatoid arthritis has a tremendous impact on my family’s finances. Because, unfortunately, only patients who need to rely on specialty drugs have to figure out how to pay for them.

As someone living with a chronic illness, I know from personal experience that one of the most stress-inducing questions concerning my health is this: how on earth do I afford the treatment I need?

Understanding Your Coverage

Step one in attempting to answer this difficult question is to make sure you understand your health insurance coverage. Insurance plans can vary a lot, but important components to understand (if your plan has them) are the amounts of your co-pay, deductible, out-of-pocket maximum, co-insurance, and annual drug benefit limit. If you are taking a specialty medication, it may be covered by your medical benefits or pharmacy benefits, depending upon how it is administered. You can get more help understanding your coverage by watching the Joint Decisions Webchat: Benefit From Your Benefits: How to Make RA Treatment More Affordable.

If you still have questions about your coverage, or if a medication your doctor recommends gets denied, call your insurance provider and ask them about it. Part of their job is to help you understand your coverage, so don’t hesitate to ask the same question multiple times if you need a better explanation. I also find it useful to take notes during a call, including the name of the person I am speaking to. That way I will have something to reference if I need to call back about the same issue.

Record Your Medical Spending

Keeping a careful record of your medical spending can be useful for several reasons. A record can help you figure out when your deductible has been met or spot errors in your bills – which do occur! I keep a Google spreadsheet to keep track of my family’s medical spending, and while it can be a bit overwhelming to see our healthcare spending add up, knowing our expenses does help us create a more accurate budget for our family.

A detailed record is also potentially useful for tax purposes, as the IRS allows you to deduct qualified medical expenses that exceed 10% of your adjusted gross income for the year – and given the statistics above it is easy to see how that can happen! Qualified medical expenses include premiums, preventative care, treatment, lab fees, surgeries, doctor’s visits, and prescription medications. You can also deduct a few things you may not have considered: acupuncture fees; mattresses bought specifically to alleviate an arthritic condition; the cost of installing special equipment like grab bars in your bathroom; and medical aids such as wheelchairs, canes, or braces. Any travel expenses you incur attending medical appointments should also be included, such as mileage on your car, parking fees, bus fares, or lodging expenses if you have to stay overnight.

But keep in mind that any expense you are reimbursed for – such as by your insurance or your employer – does not count. Things like over-the-counter medications, vitamins, or health club dues are also not deductible. The IRS maintains a complete list of deductible health expenses, which you can look at here.

Support Programs

If you are still struggling to pay for all your medical expenses, the good news is that there are many types of programs available to help ease the burden. A co-pay assistance program or pharmaceutical assistance program may help you cover the cost of an expensive specialty medication. There are also patient assistance foundations available to help. These programs can help patients access and pay for expensive medications, provide direct financial support or travel assistance, or locate appropriate assistance and support programs. CreakyJoints maintains an index of available arthritis copay cards and assistance, for easy reference.

With the help of these tips and resources, hopefully it will be easier for patients living with RA to access and afford the treatments they deserve.

This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. Janssen Biotech has compensated me for this article. All thoughts and opinions expressed here are my own.

Check out the Joint Decisions Facebook page to connect with others in the online RA community, and visit JointDecisions.com for RA resources and tools.

Monday, September 12, 2016

The California Coast Classic is almost here!!

We're T-12 days to the start of the California Coast Classic - where this year I will attempt to ride my bike 525 miles from San Francisco to Los Angeles to raise funds and awareness for people living with arthritis. I have to be honest and say I'm having some pretty major mixed feelings about everything right now.

I've spent the better part of the last eight years figuring out how to set realistic expectations for myself, how to accept whatever limitations I might be faced with, and how to give myself enough credit for small accomplishments. It feels extremely strange to reach for something so big and feel like I might actually be able to achieve it - to want something so crazy and feel like I might actually be able to do it. It's very unfamiliar and, frankly, downright scary. 

When I think about the upcoming ride, my brain seems to be taking it in turns to feel ready and then terrified. On the one hand, I am actually feeling pretty confident about my abilities. I don't expect to be able to ride every single mile, but lately I've been feeling better than I have in a long, long time - probably since well before I was originally diagnosed. My treatment is going really well (knock on all the wood) and I've trained as much as I was able (and babysitting allowed). And, on some of my recent rides, I've even felt downright good - a word I have almost certainly have not used to describe how I feel for more than eight years

But the fact that the word good feels so foreign is, in itself, downright terrifying. Can I trust my body to continue feeling good? Or am I going to wake up in camp after the first day of the ride literally unable to walk? Either is completely possible. And while I know I should be really proud of myself for everything I have already accomplished, it would mean so, so much to me to do well on the ride. I'm almost afraid to think about it, to be honest. 

Between now and the start of the ride, I'm trying my very best to stay positive and to appreciate what a gift it is for someone with severe RA to be able to ride a bike at all - let alone consider riding 525 miles. One thing keeping me positive are all the people I know are cheering me on, especially those of you who are living with arthritis yourselves! 

I've decided to take a list of names with me on the ride to help me keep moving forward, so if you or someone you love lives with arthritis, please share another name for my list! I don't want to ride for you - I want to take you with me!

You can also still donate to the cause - even if all you can spare is the cost of a latte every little bit helps! A lot of the money raised on the tour goes to scholarships to send kids with JA to camp and conference, which are such important experiences for them!  

Friday, September 9, 2016

Facing Forward: Claire

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: Claire
Location: Surrey, UK
Diagnoses: Ehlers Danols hypermobility type, chronic back & leg pain (nerve damage at L5 S1 - historic and recent surgery), bladder probs due to nerve damage
Age at Diagnosis: hypermobility noted by GP aged about 8, but formally diagnosed EDS at aged 44! Ruptured disc and cauda equina syndrome aged 21, chronic pain formally recognized after surgery for second fusion at age 44.

How are you currently treating your condition?
I have had several major back surgeries, including two fusions with titanium screws which failed. I have also taken lyrica, mirtazepine, and oxycontin. The mirtazepine left me constantly hung over, so I only took this for about a year. Last year I had a spinal cord stimulator implanted to help with the pain relief for my nerve pain, and whilst it hasn't gotten rid of the pain, when it is switched on it gives me some control back. My hospital (St. Thomas in London) was clear that I needed to reduce the opiates, which I wanted too, and I have weaned myself off the oxy. I now know that my back problems are directly related to the EDS and having been a nurse! I have always had dislocations and was the bendy kid at school, but in recent times the dislocations have become more frequent and more painful. I don't think it is a coincidence that the joint pain has really increased since stopping the oxy, so I use ibuprofen gel, ibuprofen or naproxwn, and paracetamol.

Heat is my saving grace for both my joints and nerve pain. I have an electric heat cushion and use disposable lumbar ones when the weather is cold (not forgetting my electric blanket in bed!) Whilst I use a stick to walk, as I have limited feeling in one foot, I do try to do some moderate exercise daily to keep everything moving. After I had my second son I took up yoga, and I honestly think this kept me going and nursing for so long. Now I do some gentle pilates, have recently started the Kevin Muldowney programme for EDS maintenance, use my neighbor's treadmill to walk short distances as often as I can, and try tp get out and about. I have a great NHS physio who gives me maintenance support for my joints, and acupuncture when necessary. I also have a brilliant GP who I see every month for all around physical and psychological support. The bladder probs mean that I don't feel when it is full, so whilst I do self catheterisation if I really need to, I try to remember to go to the loo regularly and drink plenty to avoid UTIs.
 
What are the biggest challenges you have faced since your diagnosis?
When I had my first surgery in 1991, the disc rupture was very obvious on a scan. This time around, scans and initial investigations were showing no reason for the horrendous pain I had, and for so long I doubted myself. I had an epidural to try to help the pain, only to experience a CSF leak. Colleagues kept saying to me "but they must be able to see something Claire" and so then the self doubt started - was I imagining it all? Whilst the redo and extension of the fusion was awful, and has probably left me more disabled, I was pleased that the surgeon confirmed he could see the damage at the nerve root.

Loss of independence in so many things has been a huge deal - from losing my nursing career to relying on others to drive my kids around to needing help getting out of the shower - incredibly frustrating. Add the increasing pain and the side effects of the drugs to this, and I ended up an emotional wreck with depression and anxiety. I have found it difficult trying to make others understand that I'm not going to get better, but have to manage the conditions. I think that now, a few years down the line, the thing that is the biggest challenge is pacing myself.I guess that this is still linked to losing independence and frustration at what I can and can't do! Insomnia is pretty tough too. Over the last couple of months some of my EDS symptoms - dizzy spells, sweating, and fainting - have increased and become quite a challenge.
What are your favorite tips and tricks for managing everyday tasks?
Accept offers of help! Don't be too proud. Also weigh up the pros and cons of using "disability" aids. Whilst using a wheelchair has been a challenge to my strive for independence, it has also increased it as I can enjoy family trips and other things that I wouldn't be able to walk. Pace yourself (ha, ha, ha) and don't feel guilty for needing to rest. Prioritize and, when having a good day, double cook and freeze meals for those bad days. Educate teenagers to help with household tasks, cooking etc. They won't want to and probably won't do it how you would, but it is actually really good for their independence as well as helping out. Learn to say no - I don't have to go out, or do a school run, or take on a new duty.

How do you manage to keep facing forward every day?
Try to remember that there is always someone worse off - having worked for years as a hospice nurse I was reminded of this every day. Good days will be interspersed by bad - those are what Netflix is for! On a bad day when the pain is awful, it isn't always easy to remember these things, but on good days try not to dwell on the bad. Joining social media chronic illness groups has been a great source of support and a way forward.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I think I would go back to the day I had a medical at a particular London teaching hospital and was told by the matron that "you have a weak back, girl." I didn't know that it and my "double joints" were linked, or that I had a genetic collagen problem, but I think I would tell my 18 year old self to take this advice on board and do as much as possible to take care of myself (maybe be more careful about the type of specialties I trained in and to keep physically in best shape.)

Do you have a blog you would like to share?
My blog is Pain Pals.

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

Wednesday, September 7, 2016

Chronic Care Collaborative: Arthritis – It Might Not Be What You Think

I was recently invited to write a guest post for the Chronic Care Collaborative on what arthritis really is and the first ever Rheumatic Diseases Awareness Month. You can check out my post here: Arthritis - It Might Not Be What You Think.

I know most of my followers don't need any additional schooling on the differences between OA, RA, and JA - but I still encourage you to check out the Chronic Care Collaborative! You can also follow them on Twitter. It's a group made up of 34 different voluntary health organizations representing a wide range of chronic diseases. They are dedicated to improving access to quality, affordable, and integrated healthcare, and they are doing some great work!

Tuesday, September 6, 2016

The First-Ever Rheumatic Disease Awareness Month!

September 2016 marks the very first Rheumatic Disease Awareness Month, created by the American College of Rheumatology.