Monday, March 28, 2016

How to Improve Intimacy with Chronic Illness

If your health has had a negative impact on your sex life, you are not alone. Many factors can impact intimacy – such as pain, fatigue, mood, body image, and more. 

Check out my newest guest post for Mango Health! I was very excited that Mango Health was willing to let me cover this subject - one that is so rarely discussed but can have such a major impact on our quality of life!

Friday, March 25, 2016

Facing Forward: Ross

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: Ross
Location: Regina, SK, Canada
Diagnosis: CRPS/RSD (complex regional pain syndrom, formerly known as reflex sympathetic dystrophy); Osteoporosis
Age at Diagnosis: 35, ten years ago

How are you currently treating your condition?
Currently my CRPS is being treated in a few ways. I am on a drug treatment plan that includes hydromorphine, gabapentin, pariet, alondronate, and naproxen. Three years ago I also underwent the implant process to implant neuro simulators to help with treatment. I also do things like breathing exercises to calm the nervous system and yoga now. As well I try to eat very healthy with as much all natural as possible.
 
What are the biggest challenges you have faced since your diagnosis?
There are so many challenges that I have had to face since my diagnosis. I have no use of my left hand and limited use of my left leg, so learning to adapt to doing everything differently hasn't been easy. Even bigger than that, however, has been having to overcome my own mind! At the beggining I felt helpless and had very little hope. I had to tell myself that I could go on to do great things with my life and that I didn't have to give up.

What are your favorite tips and tricks for managing everyday tasks?
For doing everyday tasks my tip would be to listen to your body and do everything in moderation. With CRPS stress triggers flare ups of pain, so my tip is to try and reduce stress in your life. To do this I do breathing exercises morning and night. Yoga brings in the meditation side of things that helps to calm my nervous system as well.

How do you manage to keep facing forward every day?
My attitude is that this illness will not define who I am or what I can do. I remain positive in every situation I come up against and believe that not everything has to be bad and that I can win this fight.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Going back to diagnosis day I would tell myself never to give up hope and to not be angry. I was very angry at the start that all this was happening. My confidence was low and I felt defeated.

Do you have a blog you would like to share?
My blog is Painfully Optimistic.

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

Tuesday, March 22, 2016

AbbVie Launches Rheumatology Scholarship

I was diagnosed with rheumatoid arthritis as a student, right in the middle of a dual degree program where I was simultaneously pursuing a law degree and a masters in environmental policy. The program was challenging to begin with, and learning to live with RA at the same time certainly produced additional challenges! So I was very exited to hear that AbbVie recently launched the AbbVie Rheumatology Scholarship - I really wish something like this had existed when I was still in school!

The scholarship is designed to provide financial support for exceptional students who also happen to be living with RA, juvenile idiopathic arthritis (JIA), psoriasis arthritis (PsA), or ankylosing spondylitis (AS) as they pursue their higher education goals. Here is some more info:
  • The scholarship is available to students living with RA, JIA, PsA, or AS who are seeking an undergraduate or graduate degree from an accredited U.S. university/college or trade school, and who plan to enroll for the 2016-2017 school year.
  • Fifteen Rheumatology Scholars will be selected. The award value will be $15,000 for each recipient.
  • Applicants will be judged based on academic excellence, community involvement, written response to an essay question, and the ability to serve as a positive role model for the rheumatology community.
  • Applications are due April 4, 2016. Winners will be notified by April 29, 2016.
You can find more information - as well as the application - at www.RheumScholarship.com! If you are a student I encourage you to apply!

Friday, March 18, 2016

Facing Forward: Donna

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: Donna
Location: Delaware, USA
Diagnosis: My primary diagnosis is fibromyalgia
Age at Diagnosis: 40

How are you currently treating your condition?
Right now, I'm taking a natural approach to treatment. During my first year after my diagnosis, I tried several prescription fibro medications, but wasn't able to take any of them due to side effects or because they just didn't work. Six months ago, I began working remotely with a fibromyalgia specialist in Alabama. He is a doctor of functional medicine and uses supplements and diets to treat the underlying causes of fibromyalgia. I take quite a few supplements, including some to support my adrenal glands, thyroid, digestion, and brain function. I also take many of the typical fibro supplements, including magnesium malate, a high-quality multivitamin, fish oil, CoQ10, etc. I'm on an anti-inflammatory diet and have cut out gluten, processed sugar, fast food, chemicals/preservatives, etc. I've lost 40 pounds since starting the diet in September. Overall, I have less pain and more energy. I do not feel normal, but I'm markedly better than I was when I started working with my new physician. Since my diagnosis, I've also had some success with using CBD oil for nerve pain and low-dose naltrexone for overall pain.
 
What are the biggest challenges you have faced since your diagnosis?
I'm fortunate that I've worked from home for the past 10+ years, but even with that flexibility it's been a struggle to continue to work. My income has taken quite a hit due to moving to a new state and being sick.

It's been extremely difficult to find treatments that will reduce my symptoms, and it's been hard to get family members to understand how I'm feeling, because on the outside I look just fine.

I struggle with pacing because mentally I still have lots of goals and dreams, but my body will not cooperate with everything that I want to do.  

What are your favorite tips and tricks for managing everyday tasks?
I have always been a structured, organized person, and I find that I have to be even more so with fibro. I depend on lists now to get anything done, because I can be forgetful and scattered. I try to do certain household tasks every single day, so that things don't pile up. For example, I try to always wash at least one load of laundry and empty the sink of dishes every day. I have a Roomba to help with household vacuuming. Recently I hired a cleaning company to do the heavy cleaning (like bathrooms and kitchen) once a month because it was becoming too much for me to handle on my own. I've shared more of my cleaning and organizing tips on my blog, 20 Helpful Tips for Cleaning & Organizing When You're Chronically Ill.

How do you manage to keep facing forward every day?
I'm a realist to my core. Aside from ending our lives, what real choice do any of us actually have other than to carry the cross we've been given? The sun is going to rise and set every day. We can either choose to move forward with as much grace as possible, or we can make ourselves even more miserable by having a negative attitude. I try to look for the positives in this illness and to use my own experiences to help others as much as possible. That gives me purpose.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Be your own advocate. You're the one who has to live with this condition every day, not your physicians who forget about you as soon as the next patient walks through the exam room door. Do your own research. Be proactive. Lots of small changes can add up to measurable results. Don't acceipt it when they tell you, "There's nothing else we can do..."

Do you have a blog you would like to share?
I blog about fibromyalgia and ME/CFS at Fed Up With Fatigue. I focus mostly on news, research, and treatments. 


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

Tuesday, March 15, 2016

MedNexus - A Search Engine for Patients

I was recently introduced to MedNexus, a new medical search engine, and asked to share my thoughts and opinions about the website.* Though MedNexus was originally launched as a search engine for doctors, the co-founders quickly realized that patients also need and want access to information about their own medical conditions. We all know that just typing our conditions or symptoms into Google doesn’t always lead to the most reliable information – so the idea behind MedNexus is to provide only quality search results from reliable sources.

When I visited MedNexus for the first time, I started by searching for information about rheumatoid arthritis. I was quite impressed when I had barely typed “rhe” and several useful topic suggestions were presented to me:

-       What Is Rheumatoid Arthritis?
-       How Do You Diagnose Rheumatoid Arthritis?
-       How Do You Treat Rheumatoid Arthritis?
-       What Are Lifestyle Tips For Rheumatoid Arthritis?
-       What Are Risk Factors For Rheumatoid Arthritis?

This seemed like a good start to me, so I clicked on “What Is Rheumatoid Arthritis?” to see what kind of information would be presented.

The next page had a variety of great information. In the left sidebar was a brief answer to the question under the heading “Explained.” I found the general information in this column to be accurate and a good, brief overview of what RA is. My only complaint is that I would have liked to know the source for this information and the statistics it included. I assume this summary information was provided directly by MedNexus, but that wasn’t exactly made clear. However, it is important to note that MedNexus is still in Beta, so their platform is still a work in progress - so perhaps this is an issue that will be updated in future versions.

The rest of the search results were divided into several categories: Health Topics, Published Research, Ongoing Clinical Trials, and Discussion Forums. Under Health Topics there were 102 results, which all seemed to be from highly reliable sources like the Arthritis Foundation and the Rheumatoid Patient Foundation. I thought it was great to have access to resources that had already been curated and deemed to be reliable. I also loved that the search provided a separate section with links to published scientific research. While I may not always be looking for this type of detailed information, it’s great to have a resource for finding such studies when I am. I also think that access to information about ongoing clinical trials and discussion forums could potentially be quite useful to patients.

Next I took a look at the information MedNexus had to offer on Rituxan (rituximab), the biologic medication I am currently using to treat my RA. Although there were fewer search results on this subject, the results that were presented seemed to be accurate and from reliable sources. 

Lastly, you all know that I am always looking for improved/increased resources on chronic illness and motherhood, particularly when it comes to treatment options that are safe for pregnancy and breastfeeding. So of course the last thing I did was to search for “rheumatoid arthritis and pregnancy” and “rheumatoid arthritis and breastfeeding.” The pregnancy search brought up a couple of published studies and a variety of natural treatment suggestions, none of which I found particularly helpful, unfortunately. The breastfeeding search brought up almost no results at all. Hopefully this is something that can also be improved in future versions of the site - perhaps by linking to resources such as the InfantRisk Center and Mother to Baby. Because I know for a fact that there are a lot of moms and moms-to-be out there who would really benefit from a reliable place to learn about pregnancy-safe and breastfeeding-safe treatment options for their conditions!

As I mentioned above, MedNexus is still currently in Beta – and the developers are always looking for constructive feedback to improve the experience. So if you decide to check it out, please consider taking this short survey to provide feedback and improve the site!

*I was compensated for the time I spent, but all thoughts and opinions are my own.

Monday, March 14, 2016

5 Tips on Parenting With Chronic Illness

Check out my newest guest post for Mango Health on parenting with chronic illness!

Friday, March 11, 2016

Facing Forward: Alissa

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: Alissa
Location: Belfair, WA (Seattle is the closest big city)
Diagnosis: Rheumatoid arthritis
Age at Diagnosis: 21

How are you currently treating your condition?
Treating with methotrexate and Cimzia.
 
What are the biggest challenges you have faced since your diagnosis?
Biggest emotional challenge: I was diagnosed just a few months after getting married. Honestly the biggest challenge has and continues to be feeling guilty, that I've made his life unfair with my chronic illness, knowing he'll have to deal with it the rest of his life (and we're only 22). This is something that I continue to work on: that our vows said "in sickness and in health" and we're getting to live those out intentionally, daily.

Biggest physical challenge: my husband is in the Navy, so two months after my diagnosis we finally had our big wedding & reception and moved across the country. (This was before my pain/symptoms were controlled at all, I was grateful for prednisone then)

What are your favorite tips and tricks for managing everyday tasks?
I've found sleep to be my biggest "trick" for managing everyday tasks. Also learning I'm not Superwoman and that's ok and that doesn't need to be my goal. Learning to care about what's truly important and what's not, and to prioritize. 

How do you manage to keep facing forward every day?
My husband's faith in me: the first time I gave myself an injection, crying the whole time, he said when it was over "you're so brave." The look on his face and those words keep me facing forward. I also have been blessed with some of the best friends in the world, amazing family, and my faith.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Be honest with those close to you about how much pain you're in and what you can handle. They can probably sense this to a certain extent, but not always. It's so much more fair to them, and yourself, to be honest even when it's hard, and even when you feel like you're letting them down.  You're not. Admitting weakness is a sign of strength. 

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

Thursday, March 10, 2016

Does Sexism Exist in Healthcare?

Scientific studies have actually proved that there is a definite gender bias when it comes to how pain is treated.

Friday, March 4, 2016

Facing Forward: Angela

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: Angela
Location: Russellville, AR
Diagnoses: Rheumatoid Arthritis, Fibromyalgia, Raynauds
Age at Diagnoses: 40

How are you currently treating your condition?
I am currently treating my conditions with diet, Nerium, NSAIDs, and juicing. In the beginning I was taking 60mg of steroids per day. My body did not react well to this so I started researching foods that were good for inflammation. The results were so amazing I started juicing everyday and was able to get off the steroids.
 
What are the biggest challenges you have faced since your diagnosis?
For me my biggest challenge was accepting the fact that I have a chronic illness and I would have to modify my lifestyle so that I could continue to do the things I love. I was a very active person and loved going to music festivals, camping, and hiking. Now when I plan something I have to worry about what the temperature will be, getting fatigued, and if my body will be able to accomplish the task without having to suffer for it later.

What are your favorite tips and tricks for managing everyday tasks?
For me staying warm makes managing tasks easier. I love my heating pad and electric blanket. When doing a task such as cleaning, I take frequent breaks. When going to the grocery store, I wear my gloves so that my hands don't get cold, as this is very painful for me. I also like to keep hand warmers in my pockets so that I can warm my hands when needed. When traveling I put a pillow under my elbows when holding the steering wheel for support. I also take frequent breaks to avoid getting stiff. I guess my biggest tip would be not to sweat the small stuff and know your limitations.

How do you manage to keep facing forward every day?
I learned to "embrace the suck" and to remember that I have a purpose for being here. I love helping people and one thing I have learned form having a chronic illness is how important having a support system is. So its very important for me to be there for others in need.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I remember that day like it was yesterday. I was at work when the doctor called with my test results and I remember I just broke down crying. If I could go back, I would tell myself that the life I knew was not over - it would just have to be modified. And to remember that there are people who have it a lot worse than I did.

Do you have a blog you would like to share?
Yes, I blog at Rockin RA

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

Tuesday, March 1, 2016

Understanding the Application Process for Social Security Disability Benefits

The application process for Social Security Disability Benefits is a complicated process. Here are some things to keep in mind.