Friday, June 24, 2016

Facing Forward: Joshua

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: Joshua
Location: Murrieta, CA, USA
Diagnosis: HIV Positive
Date of Diagnosis: June 5th, 2012

How are you currently treating your condition?
I am currently taking Complera which is an antiretroviral therapy three medicine "cocktail" used to suppress the levels of virus in my system. In addition to the pharmaceutical medication I eat as healthy as possible, take vitamins, maintain my spirituality with God, and exercise at least three times a week. When I am not working full time as a bail agent much of my personal life is dedicated to HIV advocacy because by helping others it has helped me cope more with my own diagnosis.
 
What are the biggest challenges you have faced since your diagnosis?
Confronting the stigma that surrounds HIV has been one of the biggest challenges I have faced since my diagnosis. As a heterosexual male who contracted the virus through unprotected sex I tend to break the sterotype that is attached to this condition. At times it is as if I have to "prove" my sexuality and it feels like I am in the middle of a rock and a hard place. Not accepted by the HIV community nor the heterosexual community. It's been tough. I've learned to deal with it however at times it's hard.

There is also the issue of daily adherence to medication. Although I have only missed a few doses since being diagnosed it is something I constantly have to remind myself of day in and day out. Sometimes when taking my pill, even though it has become routine, it brings me back to the day of my diagnosis and the array of emotions I was feeling that day. My battle with depression seems to have become more of a struggle since my diagnosis and although HIV was not the direct cause of it, as many other issues helped built up to it, the diagnosis was certainly a catalyst and major contributor.

Finding someone to accept me romantically was also a challenge. As someone who has always wanted children and the typical "white picket fence" life we all like to imagine, my diagnosis cast doubts in my mind whether that would ever truly happen. After a couple years in I am now happy to say that I am in a mixed status relationship with my girlfriend who is negative and know having kids is a possibility. In the beginning when I was diagnosed I didn't think that was ever going to happen. However, the more I have educated myself and worked alongside my healthcare team, the more I realize that HIV will not stop me from anything. It is simply an obstacle, not an impossible barrier to cross.

What are your favorite tips and tricks for managing everyday tasks?
  • For myself it is writing down at least three things in my journal that I am grateful for in my life, however great or small they may be. This helps shape my attitude for the day to focus on the good in life and make me a more productive person. It makes me realize that today is going to be a good day because I choose for it to be one.
  • Exercise for me boosts my energy and gives me more time to get the things I need to get done accomplished. Although I am not at the point where I exercise every day, even three times a week in the gym for a couple of hours makes a huge difference not only physically but mentally as well.
  • Helping others throughout the day through online advocacy helps as it puts everything into perspective. There is always someone out there that has it worse off and that makes a huge difference.
  • Making a list of things I need to get accomplished is also important for me, as often my mind seems to be running a million miles a minute. A list helps me stay focused and even if I can't accomplish everything I want on that list that exact day then I will pick it up the next day and start where I left off.
  • Having goals is important as it helps me realize what I am doing today is benefiting myself in the future. 
  • Putting myself in situations where I have to socialize is also important. Even though I am very much an extrovert, the depression can be difficult at times therefore it's important that I am not isolating myself but rather living life for the moment and interacting with others, because ultimately that will help me in managing my every day tasks. The mind is a powerful tool and if I get myself stuck in it thinking about all I have been through then it makes things difficult.
  • Not sweating the small stuff or surrounding myself with those who are toxic or dram oriented. Maintaining a calm state of mind at all times.
  • Building and surrounding myself with a support system of family and friends that have my back no matter what and know I know I can talk to whenever necessary. In addition to online support groups, both for HIV and depression, so I can speak with others living what I am going through as well. This support has been fundamental for me and the point I am now in my life.

How do you manage to keep facing forward every day?
I face forward every day by reminding myself that everything that I have been through has molded me into the person I am today. Life has ups and downs and without the downs we wouldn't appreciate the ups. Hope is a major part of my life and is a word that is misunderstood by many, but for me it's more than simply a word said loosely but a way of life. It is what propels me forward because I believe things will always get better. I'm an optimistic type person and it really took myself accepting my virus before I could see a brighter tomorrow. It's a matter of the attitude that you put into it. Whether you see the glass half empty or half full. I know that with medication adherence and taking care of myself both physically and mentally, everything is going to be ok.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Embrace what you are feeling right now and don't be ashamed to let it out or fool yourself into thinking that holding it in is a symbol of strength. It's ok to feel...Things might seem grim now but soon you will realize this is not the end but rather the beginning that is helping drive you to your purpose in life.

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

Thursday, June 23, 2016

Proposed Changes to Medicare Part B Could Limit Access To Infusion Treatments

Centers for Medicare and Medicare Services to propose changes to Medicare Part B that could limit access to infusion treatments for patients with rheumatoid arthritis.

Product Review: Quell

I have been given a Quell Relief device as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by Quell. As stated in my product review policy, my reviews will always be honest. 

I first heard about Quell in a Forbes article. According to Forbes, "the Quell is an FDA-approved wearable device that Velcros around the upper calf and uses electrical stimulation to purportedly offer pain relief without the innate dangers or risks of addiction that come with drugs." While I don't love the implication that drugs are necessarily dangerous and should be avoided, because I know I would not be able to function without the use of medication, of course I would love to reduce my reliance on so many medications if possible. So Quell sounded promising, and when I was given a chance to try the device myself I accepted immediately.

The science behind how Quell works is fairly complex, but the short version is that by stimulating specific nerves a natural pain-relief process can be activated. There is some scientific evidence to support this claim - one study showed that 81% of Quell users reported improvement in their chronic pain. However, it is important to note that this study was conducted by the company who makes the Quell device. It would be really nice to see some more third-party research on the science behind this device - especially to help justify the rather significant investment in the product.

When my Quell arrived, I used the quick start guide to figure out how to attach the electrode and then place the device on my calf. The electrodes attach to your skin with sticky gel and the device Velcros on in a little pouch. Then it was time to calibrate, and I have to admit to feeling a bit nervous during this process! Was it going to zap me, I wondered? But really it was just a slight tingling sensation. In the end it felt like TENS devices I've used before at physical therapy.

After using the quick start guide to get my Quell therapy session started, I decided to download the app to my phone and have a look at that. Quell uses Bluetooth to sync with an app you can download for free from the App Store or Google Play. The app allows you to monitor your therapy sessions and change the intensity if you want. However, one thing I wish I had known in advance is that to pair your Quell and your app you need to have the last two digits of your device's serial number - and if the device is already strapped to your leg providing therapy that number is inaccessible. So you may want to pair your Quell and app prior to starting therapy if you want to make use of the app.

There are a couple of things to keep in mind if you are considering trying Quell. For one thing, it is somewhat wardrobe limiting - especially for girls who tend to have tighter pants that the Quell won't fit beneath. So I either wore loose pants, shorts, or a skirt. I feel like this would be more of a challenge in the wintertime, but one solution to would be to just use Quell around the house or at nighttime. I also don't love that you are supposed to replace the electrodes every two weeks, because that's an additional $90 every three months in addition to the hefty initial investment. But I do like that the device was comfortable to wear - and it's great that the battery lasts a few days so you don't have to charge it every day. I have to admit that at first I found the tingling sensation very distracting as I tried to go about my day. But, after a couple of days of use, it was a lot less distracting. And when I did notice it was almost comforting to know that I was doing something proactive to help reduce my pain.

And now the $10,000 question: did it help? Honestly it is a little bit hard for me to know for sure. There are so many variables that go into how much pain I feel from day to day, and it certainly did not take away my pain all together. But, that being said, my trial of the Quell did coincide with a difficult period of transition for me. Although Rituxan has turned out to be a really great medication for me, unfortunately I was unable to last a full six months between doses. So while my rheumatologist and I worked to reduce the time between my infusions, I ended up taking a fair amount of prednisone - the drug we all love to hate! In fact, I've been on prednisone pretty consistently since the birth of my second son, which was almost two years ago at this point.

I started using Quell right after my most recent Rituxan infusion, and with my next infusion scheduled for just five months away I was in the process of trying to wean of prednisone permanently. Those of who who have been through this weaning process know that it is neither easy nor pleasant! It took several weeks, but I have been able to wean off prednisone almost completely. And I did really appreciate having access to another form of pain relief during that process. I'm not sure if I will use Quell regularly due to the cost of buying new electrodes, but I am happy to have it on hand as another option for times when I am struggling more than usual.

Wednesday, June 22, 2016

Study Shows One Third Of Rheumatoid Arthritis Patients Experience Sexual Dysfunction

A recent study shows that RA can affect sexual function in both men and women in a number of ways.

Friday, June 17, 2016

Facing Forward: Danielle

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: Danielle
Location: Edinburgh, Scotland UK
Diagnosis:Atrial tachycardia, inappropriate sinus tachycardia, sick sinus syndrome
Age at Diagnosis: 21

How are you currently treating your condition?
Pacemaker, invabradine, water, salt
 
What are the biggest challenges you have faced since your diagnosis?
Having a baby and going ahead with a third ablation that would either cure or damage my heart for good.

What are your favorite tips and tricks for managing everyday tasks?
Listen to your body. Your body knows you better than anyone. If something feels too hard at that time, it probably is - so take life one step at a time.

How do you manage to keep facing forward every day?
By seeing the smile on my son's face and also by the help and inspiration my blog gives to others faced with the same problems.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
You have to accept how it is and face your problems head on with a smile. It's ok to break down from time to time - everyone does it and it doesn't make you weak. You will learn the true meaning of love and friendship the hard way. And, most importantly, you will learn how precious life is.

Do you have a blog you would like to share?
Life of the Inappropriate Tachy Mummy

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

Friday, June 10, 2016

Facing Forward: Kenzie

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: Kenzie
Location: Oregon
Diagnosis: Indeterminate Colitis, Psoriasis, Fructose Malabsorption
Age at Diagnosis: 23 for Indeterminate Colitis and Fructose Malabsorption. 25 for Psoriasis.

How are you currently treating your condition?
I am currently on weekly Humira for my Indeterminate Colitis and Psoriasis. For the Fructose Malabsorption, I do my best to avoid foods that are high in fructose and fructans.
 
What are the biggest challenges you have faced since your diagnosis?
Finding a medication that works for me. I was first started in Lialda and after two weeks of horrible side effects from it I ended up in the hospital. After that, I was on prednisone for a few months and then I got bridged over to budesonide but that only worked for a while. I was then started on Imuran and I had an allergic reaction to it. In July 2014, I was started on Humira. I was on biweekly doses for that for about a year until I had to go on it weekly to keep my symptoms under control. I still have flare-ups and when that happens my doctor puts me on Prednisone and Hydrocortisone suppositories.

What are your favorite tips and tricks for managing everyday tasks?
I have a Passion Planner that I use for everything. It helps a lot with work, planning appointments, and things I want to do. I also recently started using ToDoist. It's a great app that is an awesome task manager. I've been able to get a lot of tasks completed that I've been meaning to get done. Like scheduling a dentist appointment!

I also do my best to focus on what I can do not on what I can't do. I used to stress out a lot about my to-do lists because I wouldn't get everything done that I would want to get done. That type of thinking caused me a lot of stress. Changing my thinking to focusing on what I can do every day has helped me a lot. If what I can do for the day is sit on the couch and watch TV, that's ok. There is nothing wrong with that.

How do you manage to keep facing forward every day?
Facing forward every day is not always an easy thing. One thing you have to realize that you don't always have to face forward. It's ok if you're feeling down. We've all been there. The important thing is to keep going.

I keep facing forward because I hope that one day there will be a cure. I also don't want to let this disease hold me back from my goals and dreams. I also don't want to be my disease.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
To immediately get on Twitter and find my people. The IBD family on there has made such a difference in my life. I really wish I had found them sooner.

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.  

Wednesday, June 8, 2016

HealthCentral - Managing Your Rheumatoid Arthritis: Big Picture

I was recently featured in HeathCentral's "Managing Your Rheumatoid Arthritis: Big Picture" photo gallery. Check it out to see some gorgeous and inspiring photos of people living with RA!

For my section, I really love the shot of me with my boys - especially my little dude's glorious blonde curls. As I told APL, if anyone goes near him with scissors I WILL DESTROY THEM! ~;o)

Tuesday, June 7, 2016

Opinion Letter in The Colorado Statesman

I recently had an opinion letter I wrote featured in The Colorado Statesman, a publication that reports on Colorado state politics.

Here is the the letter:
Letter: Research, affordable options needed to treat chronic diseases
In the middle of law school, I started experiencing severe joint pain and fatigue. There were many days when I was unable to walk, and simple tasks like eating or brushing my teeth became excruciating. Eventually I was diagnosed with rheumatoid arthritis – an autoimmune disease that currently has no cure. I was only 25 years old.



After months of searching for an effective treatment, I finally experienced some relief on a specialty medication called a biologic. These genetically engineered proteins, generally administered via injection or infusion, make a huge difference in my quality of life. Unfortunately, there’s no guarantee that a particular biologic will work or that it will continue to be effective. There are currently only nine biologics approved to treat RA, and at the age of 33 I’m already on my fourth. For the sake of people like me living with lifelong conditions like RA, we need to encourage continued research and innovation to develop additional treatment options.



We also need to find ways to make these treatments more affordable. Although my health insurance company does cover a portion of the cost of my expensive medication, my family was billed a total of $9,875 out-of-pocket for the two infusions I received in 2015. Without the aid of a co-pay assistance program, I never would have been able to afford this life changing medication. We need to take action to improve this system so that the 117 million Americans living with chronic diseases can have access to effective treatments that allow them to get back to living their lives.

The same letter was also published in The Daily Camera!

Could An Electrical Implant In Your Brain Help With Chronic Pain?

Results of a new study have allowed scientists to confirm that electrical stimulation of a particular area of the brain can work as a painkiller.

Friday, June 3, 2016

Facing Forward: Cathy

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: Cathy
Location: Naperville, IL
Diagnosis: Rheumatoid Arthritis, Raynaud's Disease
Age at Diagnosis: 36

How are you currently treating your condition?
My RA journey has included it all. I originally tried an integrative approach working with a rheumatologist and taking medications while also working with a naturopath on supplements and diet. Then for several years I used a natural approach only. Today I am back on medications (Enbrel and Leflunomide) and mostly follow a gluten free diet with low consumption of dairy and processed foods, although changes in lifestyle have upset that goal a bit recently.
 
What are the biggest challenges you have faced since your diagnosis?
My original symptoms came on strong and fast. It was extremely challenging to realize my once active body could struggle to lift a cup of tea or dreaded the five stairs to the restroom. My body was in this state for many years and I guess slowly it became my frame of mind so when I found a good combination of medications almost six years ago, I was hugely surprised that the transition back to a well person again would be so difficult. I found that my mind had become used to setting limits for myself and it took a while to get back into the swing of moving again.

What are your favorite tips and tricks for managing everyday tasks?
Ask for help. This was the hardest thing for me to learn but when you are in pain, your friends and family can't take that away. They need/want to help and when you allow it, you are helping both you and them.

How do you manage to keep facing forward every day?
I tend to look at the positive in every situation. "Wow. I am so lucky I didn't have this awful flare yesterday." Seeing the bright side of my current situation helps me to face forward and not dwell on the negative.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Rheumatoid arthritis is like a thunderstorm. A flare can get really bad and be extremely scary, but it always calms down. One more: "You don't know your own strength yet."

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.