Friday, May 27, 2016

Facing Forward: Ashley

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Ashley
Location: Colorado Springs, CO
Diagnosis: Scleroderma and Raynauds Phenomenon
Age at Diagnosis: 25

How are you currently treating your condition?
Currently taking prednisone so I can physically move around. Cellcept and Hydroxychloroquine to try to treat and hopefully slow the Scleroderma progression. Blood pressure medicine to help blood flow for Raynauds. Also on several antacids to help with the side effects of having Scleroderma in my esophagus.
 
What are the biggest challenges you have faced since your diagnosis?
My biggest challenges are losing my independence and trying to love the "new me." I no longer can tie my hair up into ponytails and such because my fingers can not grasp like they used to. My kids carseats are very hard for me to unbuckle. Simply bending over to clean toys off the floor is nearly impossible. Picking up and carrying my 1 year old is hard because my wrists don't bend anymore. My body is just stiffening up so daily tasks are incredibly difficult.

What are your favorite tips and tricks for managing everyday tasks?
I love my jar opener, it helps open all kinds of things for me. Using shampoo and other beauty products with pump bottles is helpful. Doing the dishes with nice warm water is soothing on my hands - I stop and do my hand stretches while my hands are warmed up. My heated blanket and microwavable heat packs have been a lifesaver while having a bad Raynauds attack. I have also learned to stay calm and not to get worked up over something I can't do.

How do you manage to keep facing forward every day?
I manage to face forward for my children. I have a reason to wake up every morning, two beautiful sons that are anxious to learn and explore our world. My family has been such a great support system. My mom takes my son to school on days my hands can't manipulate the carseat buckles, which has sadly been more often than not lately. My boyfriend and I have been together for 8 years, so he has been my rock during my health spiral. He lovingly does my hair for me and helps in any way he can. My family members are so helpful with housework and watching the kids while I have appointments. My dad will take time off work to drive me to appointments in Denver. I am surrounded by good people that love me for me. I am still trying to not mourn the loss of who I was before the disease. I am still me and can still live my life to the fullest. Some days are definitely harder than others. I make sure I always have something to look forward to. Weather it is planning my son's birthday party or something as small as trying a new recipe. I need to live with exuberance for my children and be the person I want them to remember.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Start occupational therapy for your hands right away!

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

Wednesday, May 25, 2016

How To Appeal a Social Security Disability Denial

Receiving a denial does not mean that you will never be able to receive benefits. You can always appeal the decision of the Social Security Administration (SSA).

Tuesday, May 24, 2016

Unique Reference Number

I know it must seem like I complain about problems with our healthcare system all the time, but somehow it never ceases to amaze me how difficult insurance companies and providers make it for patients to get the care they need, not to mention the difficulties with paying for it. And it is my (perhaps vain) hope that speaking out about how ridiculous things are can help pave the way to getting them changed.

Take a recent experience I had with my youngest son. He was standing on a chair to help with baking muffins when he lost his balance and fell, hitting his face on the edge of the counter on the way down. He ended up with a cut really close to his eye, so I took him to the emergency room to make sure his eye hadn't been injured and that he didn't need stitches. It was a very quiet morning at the ER. The doctor examined him, confirmed that the eye was not injured and that the cut didn't need stitches, and we were in and out in less than 20 minutes - for which the total charge was $516.93, but that's a complaint for another time!

What I want to talk about here is my portion of the bill. The hospital offered a way to pay it online - which, let's be honest, is the most convenient way for anyone to do anything these days. So I went to the website provided and then figured out how to navigate to the bill pay section, because of course the directions on the bill didn't lead you directly to the correct page. When I got to the bill pay page, it asked for the amount which I entered. It asked for the patient account number, which I was able to find on the bill and enter. Then it asked for the "unique reference number." 


There was nothing labeled with that phrase anywhere on the two page bill. The online form provided no explanation or help as to where to potentially find such a number on the bill. And when I searched the hospital's website for "unique reference number" I got this:

So, in the end, I had no other option but to call and ask. Of course whenever you call an insurance company or hospital you have to navigate through a phone tree. Most of the time they ask you to input your account number on your phone's keypad, and then they immediately ask you to say it out loud again as soon as you get a human on the line - so what was the point of entering it?!? But that's also a complaint for another time. 

When I finally got through all the preliminary questions to "verify my identity" I asked where I could find the "unique reference number" on my bill. And the representative pointed me to this:




Tiny, completely unlabeled numbers on the bottom right-hand corner of the page. How on earth was I supposed to know that?!? After taking a deep breath to control my frustration, I politely asked the representative how patients were supposed to figure that out - and he told me that patients call all the time to ask where to find the "unique reference number" and that I shouldn't feel bad about not being able to figure out out.

But here's the thing: this hospital has created a system that makes it very inconvenient and difficult for patients to pay their bill. And that's not great. But, worse than that, it's also a known problem - an issue that patients are reporting all the time according to the representative - and they have done nothing to solve the problem and improve the patient experience.

And ultimately I think that's a major problem with our healthcare system as a whole. It's an extremely difficult system for patient's to navigate - and that seems to be a known fact. But despite knowing how much patient's are struggling, somehow it's still extremely difficult to institute changes to improve the patient experience - even for known issues that would be extremely simple to fix. And I think that's just terrible.

Friday, May 20, 2016

Facing Forward: Mandy

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: Mandy & Joe (the dog!)
Location: Weehawken, New Jersey
Diagnosis: Ankylosing Spondylitis & two bionic knees (knee replacements, and I got a new knee April 4th!)
Age at Diagnosis: I started to have symptoms at age 20. I bent down to get a shoe and noticed my knee swollen when I got back up. It started as a torn meniscus and after I had a scope to get it fixed - it never healed. Over time, inflammation and swelling spread through my whole body. I saw many doctors, tried many treatments, supplements, and diets. It wasn't until May 2014 (I was 29) that I had a doctor who tested and diagnosed me correctly. I was weird because my knees were mainly affected and people with AS are usually males with spine issues. 

How are you currently treating your condition?
I am currently on Remicade infusion every six weeks. It's been life changing! Prior to Remicade, I was on steroids and sulfasalazine. I was afraid of Biologics from things I've read but I was wrong. Biologics have a place and you shouldn't be afraid of them! Prior to diagnosis, I learned a TON about diets and supplementation. I think it's important to get nutrition from food. I follow a moderately paleo/primal diet. I mainly avoid grains and focus on quality meat and veggies. Veggies and meat are super easy to prepare, so it works for me. Eventually, I want to get a nutritional coach who can look at my lab tests and determine the best style of eating for me. Playing with diet is overwhelming and can be a chore, so it's important to have someone to help you figure out what works best for you! I also have been incorporating the notion that my disease is not the end of the world, and rather than resent my disease, I embrace it. By doing this, I look at it like a learning opportunity. There are so many things you can learn by having a chronic illness that "normal people" don't get to learn. Spoonies are unique and strong individuals with beautiful stories to tell.
 
What are the biggest challenges you have faced since your diagnosis?
My biggest challenge I've dealt with is facing my disease and taking control of my healthcare. I spent a lot of time ignoring my disease because I couldn't find the help I needed. Doctors brushed me off, wouldn't listen, or prescribed me meds that didn't work. I left it up to a doctor to tell me what to do, but that is a big mistake. At the end of the day they don't really care (that's the truth!) You can't expect anyone to care about your health but you. I have learned that you need to be the boss! Only you know what's best for YOU and if your doctor isn't listening - FIRE THEM!

What are your favorite tips and tricks for managing everyday tasks?
Right now I am on crutches so it's been a struggle to manage everyday! However, I have SO much to be thankful for! Every morning I journal about my feelings and then I also write down 2 or 3 things I am thankful for to remind myself I have a kick-ass life regardless of my situation.

How do you manage to keep facing forward every day?
See above!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
YOU ARE THE BOSS, GIRL! Doctors, Google, supplements, diets, etc. are not a magic bullet. Embrace your health challenge, develop a plan, set goals, and hire a health care team to help you live the best life you possibly can! It's not easy but NOBODY'S live is!

Do you have a blog you would like to share?
Bliss and Health is a space for sharing useful info and inspiration (and a whole lot of humor) in hopes to empower those with chronic illnesses to overcome their health challenges to live blissful lives.

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

Tuesday, May 17, 2016

Remedy - Saving Patients Money By Finding Errors in Medical Bills

This is a sponsored post for Remedy. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company. As stated in my product review policy, my reviews will always be honest.

So many of us - especially those of us living with chronic illnesses like rheumatoid arthritis - spend huge portions of our budgets on medical expenses. For example, my family paid more than $8,000 last year, out of pocket. It's a huge portion of our family's budget, so it's not only responsible but necessary for me to try to make some sense of my medical bills to make sure we aren't paying more than we should.

But did you ever get an "Explanation of Benefits" in the mail and wonder what on earth it is actually supposed to explain? There's a billion numbers and charges and codes and, even if you can manage to divine some meaning from it, it often looks nothing like the actual bill when that arrives. Not to mention that every medical provider's bills are organized differently. In the end, even experienced patients can find it extremely difficult to identify errors and overcharges. And, unfortunately for us, overcharges are extremely common.

Remedy is a company that helps patients save money by auditing your medical bills for errors and savings. They'll also advocate for you with your medical provider in an attempt to reduce your bill. Remedy is free to try - if they don't save you any money there is no charge. And, if they do find errors that results in savings for you, they only charge 20% of what they save you with a cap of $99. Remedy says they find mistakes on 70% of the medical bills submitted to them, which results in saving the average family $1000 per year. 

This sounded like something that could be beneficial to so many of my readers, so I agreed write this post. Shortly after I had agreed, I got some pretty hefty medical bills in the mail - both for myself and my husband. So I decided to give the process a try myself. 

It's super easy to get started. I visited www.tryremedy.com, clicked "Get Started," and entered my cell phone number. Within a few minutes I got a text welcoming me to Remedy. I had to go back to their site to submit my credit card information, but remember that there is only a charge if Remedy is able to find savings and if they do it won't be more than $99, so I figured that was worth it. I also had to take a photo of my insurance card and fill out a form to give Remedy permission to speak on my behalf with my medical providers. 

After that was all set up I started texting with my Remedy representative. Submitting medical bills is super easy - you just take a photo with your phone and text it to your representative. That's it! And since my husband and I are on the same insurance plan, I was even able to send photos of my husband's medical bills. Then there was nothing more to do but wait and see if they found any overcharges!

Although Remedy did not end up finding any errors or overcharges on our bills, it was very comforting to know that a professional had double checked everything for free. I will warn that the process can take a while - because Remedy often has to submit a bunch of forms, make phone calls, write letters, and wait for responses - so don't expect a result right away. However, in the meantime, my representative was always available give me updates when I asked for them. They were also very patient in explaining when I had additional questions. 

Overall, I think Remedy offers a very valuable service to patients - and if I ever have bills in the future that I am unsure about, I'll certainly be submitting them to Remedy for a second opinion!

Friday, May 13, 2016

Facing Forward: Jamie

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: Jamie
Location: Salt Lake City, UT
Diagnosis: Ankylosing Spondylitis, Peripheral Spondyloarthropathy, Asymptomatic/Silent Celiac Disease, and Fibromyalgia
Age at Diagnosis: Onset at 16 years old but we thought the pain was from a car accident. Official diagnosis was in October 2011, when I was 24.

How are you currently treating your condition?
I recently went back on a biologic, Cimzia. I was off biologics for 2 years because I was pregnant with my son and breastfeeding and did not feel comfortable taking any medicines. I also take NSAIDs, a very small dosage of Percocet, and Meriva for inflammation. Because of the celiac, I follow a gluten-free diet. I am currently phasing out all grains though because that's when I feel the best! I also do low impact exercise when I am able to.
 
What are the biggest challenges you have faced since your diagnosis?
Maintaining a gluten-free diet. It doesn't make me physically sick so sometimes I am weak and have no motivation. But then I have to remember it still causes inflammation elsewhere and that long-term it can give me cancer and other awful diseases. Another challenge is raising a very mobile and active 10-month-old baby boy while physically not feeling well. I stay home with him and some days I go to bed 15 minutes after he does. I am very lucky to have a great support system for help. Another challenge after diagnosis was maintaining friendships. When I was put on a cocktail of drugs, the fatigue made it so I couldn't keep up with social events and lost a few friends. Chronic pain is depressing and isolating and that has been an additional challenge.

What are your favorite tips and tricks for managing everyday tasks?
Accept that you can't do it all and ASK FOR HELP. My husband works very long hours but he is a great help on the weekend. But I struggle during the week. I've recently hired part-time help so that I can take care of myself in order to be the best mom for my baby boy. Each day, I tell myself that I can do one big task like grocery shopping and that's it. Even if I feel well enough to do more, I know that it will eventually be too much and I'll pay for it later. Another tip is to try to keep an organized home. I find it reduces my stress.

How do you manage to keep facing forward every day?
My son has given me a new outlook and attitude. I want to be better and do better. When I feel down or hopeless, I remember that I am his world. This gives me the drive I need to stay positive and keep going. Attitude and perception make all the difference when you have any chronic illness.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
You're going to have great days. You're going to have OK days. You're going to have bad days. You are alive and breathing and you are strong. You will get through this.

Do you have a blog you would like to share?
My blog is Letters to Andrew. I write letters to my son about everything, but mostly raising him while dealing with my chronic illness and depression.

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

Wednesday, May 11, 2016

Our Favorite Apps!

I’ve been threatening to do this for a long time and I finally got around to it! Here’s a list of our favorite apps – because guess what? Sometimes mama needs a break!!!

A good many of these apps are free! As for the ones that cost a few dollars, we certainly didn’t pay for all of them. Many we got for free through Starbucks or AppGratis or similar promotions. But, in general, I think most of these are worth the money OR they offer enough of a free demo to be entertaining for free.

[NOTE: Every app marked ** can be played on the first generation iPad with the old operating system!!]

For babies:
·      Music Box – by Sago Mini ($2.99) **

For toddlers:
·      ABC Train – by Knox Apps (free) **
·      Friends – by Sago Mini (free) **
·      Lotto matching – by Tiny Hands (first few levels free; unlock $3.99) **
·      Towers 1 – by Tiny Hands (first few levels free; unlock $3.99) **
·      Towers 2 – by Tiny Hands (first few levels free; unlock $3.99) **
·      First Words 1 – by Tiny Hands (first few levels free; unlock $3.99) **
·      First Words 2 – by Tiny Hands (first few levels free; unlock $3.99) **
·      What’s my Pair 1 – by Tiny Hands (first few levels free; unlock $3.99) **
·      What’s my Pair 2 – by Tiny Hands (first few levels free; unlock $3.99) **
·      Sorting 1 – by Tiny Hands (first few levels free; unlock $3.99) **
·      Sorting 2 – by Tiny Hands (first few levels free; unlock $3.99) **
·      Trucks – by Duck Duck Moose ($2.99) **
·      Pepi Tree – by Pepi Play ($2.99) **

For preschoolers :
·      Connect the dots – by Tiny Hands (first few levels free; unlock $2.99) **
·      Sorting 3 – by Tiny Hands (first few levels free; unlock $3.99) **
·      What's my Pair 3 – by Tiny Hands (first few levels free; unlock $3.99) **
·      Town Center – by Tiny Hands (first few levels free; unlock $3.99) **
·      Raccoon Treehouse – by Tiny Hands (first few levels free; unlock $4.99) **
·      Endless Reader – by Originator (first few levels free; starter pack $5.99) **
·      Endless 123 – by Originator (first few levels free; starter pack $6.99) **
·      Endless Wordplay – by Originator (first few levels free; starter pack $6.99)
·      Build A Truck – by Duck Duck Moose ($1.99) **
·      Monkey Preschool Lunchbox ($1.99) **
·      More Trucks – by Duck Duck Moose ($2.99) **
·      Toca Life: Town – by Toca Boca ($2.99) **
·      Toca Kitchen – by Toca Boca ($2.99) **
·      ABC Food – by Peapod Labs ($2.99) **
·      Easy Music – by Edoki Academy ($3.99)

Any Age:
·      Kids Doodle – by Bejoy Mobile (free) **
·      Balls – by iotic (free)
·      BoomKLAKers – by Funky Bots ($1.99) **

Understanding A Social Security Disability Denial

Even if your application is denied the first time, it may still be possible for you to be granted disability benefits.

Tuesday, May 10, 2016

What Exactly is Arthritis? Let’s Set The Record Straight!

May is arthritis awareness month - the perfect time to set the record straight that the word arthritis is used to refer to more than 100 different diseases and conditions that destroy joints, bones, muscles, cartilage, and other tissue.

Friday, May 6, 2016

Facing Forward: Ivy

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: Ivy
Location: Auburn, AL
Diagnosis & Age:
- PTSD at 3 years old
- Anxiety at 17 years old
- Depression at 17 years old
- Hypothyroidism at 17 years old
- Hashimoto's Thyroditis at 18 years old
- Sleep apnea at 20 years old
- Lupus in skin and joints at 20 years old

Currently being tested for:
- Fibromyalgia
- COPD
- CREST
- Explanation for lung troubles and nodules
- Explanation for pressure in my heart

How are you currently treating your condition?
I'm currently seeing a number of specialists and doing what they recommend. I am on multiple medications that I take daily. I was prescribed a couple for a few of my symptoms that I have yet to take. I just don't want to take more than my body really needs at this moment. I am not currently on a special diet or trying alternative treatments.
 
What are the biggest challenges you have faced since your diagnosis?
I've definitely struggled with accepting my diagnoses. I have always been incredibly independent, even as a child. I don't like knowing that I have to depend on others because I can't physically do everything on my own anymore. Another challenge was giving up school and work. I still haven't recovered from either of these.

What are your favorite tips and tricks for managing everyday tasks?
I think my favorite tip would be to know your body. I've learned how much energy each task takes and I've learned to prioritize my tasks. It's even gotten to the point that if I know I have plans one day I'll make sure I'm free to relax the day before and after those plans. I've always been one to over-schedule myself and my diagnoses have helped me leave time for myself and recovering if need be.

How do you manage to keep facing forward every day?
I want to say that I've completely managed this, but I haven't. One of my goals is to focus on my verse of encouragement for the month. I've written a specific verse in my planner for each month. I've also started a blog series for these verses and I create a beautiful printable of the verse both for myself and my readers. I also post a daily inspirational quote on my Instagram each morning. I use it to motivate myself, inspire my followers, and support artists.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Advocate, advocate, advocate. I would have told myself that I need to advocate for myself. I have spent the last four years trying to get my diagnosis correct and it could have been solved so much earlier had I just made my doctors listen to me or switched doctors all together.

Do you have a blog you would like to share?
Yes! My blog is labeled Perfectly Ambitious. I thought the name was fitting because even though my diagnoses are an obstacle, I am still incredibly ambitious and motivated to fulfill my dreams. My blog's three main focuses are: living, creating, and encouraging others to be perfectly ambitious. I also make sure to post about my spoonie life or tips on Saturdays, or as I like to call it "Spoonie Saturdays."

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