Chronic Illness is a Journey

Who Said Life Would Be Easy?



7 Signs It Was Time to Find a New Doctor

7 Signs It Was Time to Find a New Doctor

I was in the waiting room dreading yet another appointment with my rheumatologist. It was nine months prior that I was diagnosed by my primary physician with rheumatoid arthritis (RA) and I didn’t know what my doctor-patient relationship should look like. At that third appointment with Dr. “A,” I determined it was time for me to find a new doctor to treat my RA and fibromyalgia.

The Red Flags

How did I know when the time was right to find a new doctor? Here are the seven red flags that helped to make that decision.

  1. My doctor did not listen to me. Often times, it felt like Dr. A was not listening to my concerns. She would interrupt me or even repeat the same questions she previously asked. Moreover, at each visit, she seemed uninformed about my health and why I was there. It was as if I was seeing a new doctor at each appointment. Moreover, she refused to change my medications despite the side effects I endured. For example, I brought to her attention that my vision had worsened since I started on Plaquenil and she refused to acknowledge that this was a side effect of the medication and insisted that I continue taking it.
  2. I felt that she did not believe I was sick. My doctor was a rheumatologist and she still would not attribute some of my symptoms to RA. She would suggest things like stress and hormones. Further, even though she had diagnosed my fibromyalgia, she refused to prescribe anything for it. She told me to lose weight and change my diet. I could not understand the reasoning behind her thinking and it made me skeptical to share with her how I was feeling. Under her care, I was not getting better; I was getting worse.


5 Tips for Being Productive with Chronic Pain

5 Tips for Being Productive with Chronic Pain by patient advocate Lana Barhum. Read it on the Mango Health Blog at

The American Academy of Pain Medicine reports that more than half of Americans live with chronic pain. Furthermore, at least 40% report that pain interferes with their ability to work and enjoy everyday life. So how do you stay productive when pain is a regular part of your routine? Patient advocate Lana Barhum shares five tried-and-true tips.

Don’t put it off.
Putting projects off until the last minute is often tempting for everyone. But procrastinating is an easy way to find yourself overwhelmed. Break down major projects into smaller, discrete tasks, then approach each task one at a time. Finishing a task – no matter how small – not only helps you feel successful, but also generates momentum toward the next task.

Life with chronic illness is unpredictable, and I never quite know how I’ll feel the next day. Doing a little bit of work each day makes it easier to smooth over any interruptions that chronic illness might cause. When possible, getting started well before deadlines is generally wise, too.

Read more at 

4 Healthy Ways to Manage Chronic Illness Anger


4 Healthy Ways to Manage Chronic Illness Anger by RA and fibromyalgia advocate Lana Barhum. Read it at Mango Health:

Anger is a natural response to dealing with chronic illness frustrations. But it’s important not to let anger to prevent you from living your best possible life. Speaking from experience, rheumatoid arthritis and fibromyalgia advocate Lana Barhum shares four healthy ways to manage chronic illness anger.

Chronic illness came into my life when I thought I had my life in order. I was 32 years old, mother of a nine year old and a newborn, and looking at law schools. When my life was altered by rheumatoid arthritis (RA) and fibromyalgia one day, I became angry at a life that no longer resembled mine.

I was angry because I was suddenly sick with health limitations. Because of the loved ones who I felt would never understand. Mostly, because I felt like there was unfairness.

You are allowed to be angry sometimes. What is important, however, is that you don’t allow anger to take over and negatively impact how you live with your disease. If you experience anger toward chronic illness on a regular basis, here are four ways to be proactive about keeping it to a minimum.


Oh, the Anxiety!

It was 1998 when I first started having panic attacks.  Back then, I didn’t know what they were. But considering how difficult my life was at the time, they were expected. I recall having a feeling that something was about to go wrong and then the sweating, heart palpitations and shaking would start.  It felt like I was having some kind of health episode – maybe a heart attack or stroke. It was ridiculous because I was only in my 20s!

While the episodes would always pass, they often left me shaken trying to grasp what had happened and what was happening to me.  Back then, I had not yet been diagnosed with RA and fibromyalgia.  It would take another ten years for that to happen. The panic attacks got more and more frequent and they continued for years.

I got treatment but nothing helped.  I remember having to go outside in the dead of winter because I was struggling to breathe and sweating like crazy.  Emergency room visits involved lots of testing and no answers.  One day, they just stopped. I don’t know when or why but they did.  Maybe, it was because of the medications I was taking to treat RA and fibromyalgia or maybe, it was the years of therapy, but they stopped and they stopped for years.

The anxiety and panic attacks have recently started up again and have been happening for a few months now.  It seems like there is no end in sight.  I know what they are but it doesn’t make them any less difficult.  In the past, stressful events in my life triggered them and that is why I am struggling to understand them now. I am not dealing with anything stressful. Granted, I don’t do well in crowded or tight places and struggle with fears of lack of acceptance and failure, but I have learned to avoid these things or manage them appropriately.

I am frustrated that I trade one ailment for another.  I just found out the pre-cancer cells are gone and that they won’t probably won’t return and that should be cause for celebration but I am struggling to deal with something else.  I have accepted RA and fibromyalgia and outside from a few flare-up episodes throughout the year, I consider myself doing well.  My worries as single mother are not new.  Any other ongoing difficulties that I have endured are the norm. I accept them. But why this? Why now?

I always told myself asking why didn’t give me any solutions.  The best I can do right now is to work with my doctor to look for solutions and to manage each panic attack as it comes.  What other options do I have?

Here’s My Diagnosis Story. What’s Yours?

What’s your diagnosis journey? Our patient advocate Lana describes hers.

Here's My Diagnosis Story. What's Yours?If you were reading a book or watching a movie about a person with a disease, the main character’s chronic illness would have some dramatic beginning: a fall, an accident, a lump, or a call from the doctor about a test result.

But in real life, chronic illness doesn’t always work that way. In fact, most of us got sick gradually and then suddenly. We usually can’t pinpoint an event in our lives when the onset of symptoms started.


3 Tips for Redefining Normal with Chronic Illness


3 Tips for Redefining Normal with Chronic Illness

What do you do when life hands you a life-altering diagnosis?

You redefine everything you know.

You have to if you want to improve your physical health and emotional well-being. Along the way to your new normal, you will find out how to make new choices and learn from past ones. Most importantly, you will come out stronger and more in control of your medical outcome than you ever thought possible.

Life changes

Normal isn’t going to return even if you find a successful treatment plan and even if your pain levels are managed. Normal stopped when you weren’t looking.

You have been through a lot pain-wise, diagnosis-wise, and life-wise. The people you expected to be there for you weren’t. You had to change careers or life plans, or you gave up your favorite activities. Life has changed and nothing remains the same, and your life will continue to change.

Are you prepared to redefine normal if your health worsens or if a major health event happens?


When You’re Tired of Trying to ‘Remain Grateful’ During a Life of Chronic Illness

Chronic illness came into my life at a time when I thought I had everything in order. I was married, with a newborn and a 9-year-old, and looking at law  schools. One day, I found my life suddenly trampled on by rheumatoid arthritis  (RA) and fibromyalgia and after that, any talk of gratitude would fill me with  anger.

I wasn’t grateful, and the very suggestion I should be seemed to declare my illnesses untrue and insignificant. My life no longer resembled my life. and to make matters worse, it felt like my pain was being discounted.

Long before I got sick, I was often grateful.

Even in the toughest moments of my life, I would focus on all the reasons I was  blessed. I was raised to be appreciative, and I knew it was good for me. But after years of being sick, I didn’t feel like being grateful anymore.

I stayed angry for many years. Because I was sick. Because others weren’t so understanding. Because I had to give up on some of my dreams and because my marriage was failing. And for so many other reasons.


When It Feels Like You Have Done It All


Learning to stay hopeful as you experience frustration and exhaustion from living with chronic illness.

When It Feels Like You Have Done It All
Living with a chronic illness, such as fibromyalgia, arthritis or lupus, can be very frustrating. There is no one size fits all solution. Even when patients are following doctor’s orders, they can still struggle to manage their disease symptoms. And when treatments aren’t working, patients are left to wonder if they should just give up.

At the End of Your Rope

I suspect that many of you have reached a point where it feels as if you are tired, frustrated and at the end of your rope because the things you are doing to feel better just aren’t enough.

Here is a typical comment I hear:

“I am in my 30s (or 40s or 50s), overweight, and living with depression, anxiety and worsening chronic illness symptoms despite proper diet, exercise and medication. I have tried everything under the sun to get my symptoms under control but I have had no luck. I am tired of not seeing results, getting my hopes up and going to all of the doctor’s appointments. What do you do when you feel like you have done it all to no avail?”

Like so many, I have left no stone unturned in moving towards a somewhat normal life where chronic illness does not dictate my actions. There have been times where I, too, have wanted to give up trying to figure out how to get well. And there have been times where I have flat out given up—for a little while, at least.

It’s Frustrating

Most of us living with chronic illness do not have medical degrees. But yet, we are expected to research our own diseases and be our own advocates, therapists, personal trainers, nutritionists and so much more. We are trying to do this all while we are sick and wishing we could just curl up under our covers and never leave our beds.
Chronic illness is a long and difficult journey of trying to find answers and working toward feeling better. I don’t know what ordinary is anymore but luckily, I have found a new type of normal that works for me. It’s about getting as close to feeling as I did before I got sick. It is about making it through the day without triggering my symptoms and increasing my fatigue. And it’s about trying to manage my anxiety and my depression symptoms, as they arise. I try to enjoy the days when my brain isn’t foggy.

It has been a frustrating experience, at times, and like so many, I have tried everything to get results. I have read hundreds of books, met with numerous doctors, visited thousands of websites, and tried various therapies from medicines to herbs and supplements and to alternative therapies, such as yoga, meditation and physical therapy. I haven’t always gotten the desired results, adding to my frustration




9 Valuable Lessons Gained From Chronic Illness

9 Valuable Lessons Gained From Chronic Illness

(From August 20, 2014 )

Going into my sixth year living with a chronic illness, I consider myself experienced in meeting the challenges imposed by chronic illness. The term “chronic illness” doesn’t bother me and I no longer see my illnesses as a burden. Rather, I view them as a determinant of who I can become. Further, how I choose to cope determines the lessons I gain and how those lessons shape my very existence.

Here are nine valuable lessons that have shaped my life over the last six years.

Enjoy Life Even When It Hurts

There have been many occasions where I just didn’t feel motivated to follow through on plans with friends and family. But when I forced myself to get out and push past the pain, I was glad I got to enjoy that time and to make those memories. And yes, it is true that we should take care of ourselves — and there will be plenty of plans that do get cancelled — but we shouldn’t make canceling plans the norm. If you are going to be in pain, you might as well do the things you enjoy to help you forget. Trust me, your mind, body and soul will thank you.

I am Not Lazy

Getting the rest I need doesn’t make me lazy. If anything, it is a reminder that I am chronically ill. I deal with fogginess, fatigue, and pain daily and these symptoms force me to rest and conserve my energy. There have been times where I have pushed myself for fear of being called lazy and sometimes, I worry that if do less or rest more, I might actually be lazy. I have learned that my illnesses cause physical limitations and I can only give what I can give and nothing more. That doesn’t mean I am lazy. If anything, it means I do the best I can and often, it feels like I am giving more than others do.


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