Author Archive

August 9, 2016

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?

August 8, 2016

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.

 

June 27, 2016

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?

Read more at http://www.diabeticconnect.com/diabetes-information-articles/general/2462-3-tips-for-redefining-normal-with-chronic-illness#toU2ScB26El80hll.99

June 13, 2016

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.

READ MORE AT http://themighty.com/2016/06/finding-gratitude-ith-chronic-illness-even-life-seems-unfair/

May 13, 2016

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

Read more at http://www.diabeticconnect.com/diabetes-information-articles/general/1162-when-it-feels-like-you-have-done-it-all#FXMsuWCrzZ0fmiK6.99

 

 

May 11, 2016

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.

Read more at http://www.arthritisconnect.com/arthritis-articles/435-9-valuable-lessons-gained-from-chronic-illness#0MJY33AroZ0kWzYX.97

April 13, 2016

Acknowledging the Monster of Arthritis and Pain

Learn how to accept chronic pain in your life with humor and gratitude.

Acknowledging the Monster of Arthritis and Pain

My world has changed considerably since chronic illness. But even though I have had rheumatoid arthritis (RA) and fibromyalgia for nearly eight years, there are still times where I view my body as my enemy and I don’t know if I can be the “me” that I need to be.

How can I have a normal life, raise my kids, be successful professionally and find love again when my life is consumed by the monster that is chronic illness and pain?

It is has taken me time and real life comedic moments to come to terms with that monster, whom I call RAF (an abbreviated combination of my RA and fibromyalgia). And lucky for me, RAF is always around.

My Revolving Door Plight

RAF is part of my biggest daily challenge — that revolving door in my office building that I can’t always push. The non-revolving door, I feel, is for people with visible disabilities and I am not part of that reputable group. Most of the time, it takes all the strength I have to push my way out through the revolving door. And, there are times when I need help.

One evening, I found myself struggling with brain fog, combined with a lack of coordination, strength and mobility. RAF was suddenly standing behind me breathing heavily, growling, and pulling me backwards. I contemplated whether RAF expected a fire department rescue. After what seemed like an eternity, the door started moving and I felt the cold February air outside. I didn’t have time to thank the hero who rescued me because he quickly walked off, leaving me both grateful and embarrassed.

As I sat in my car, I grasped how invisibly disabled I was. It took nearly eight years to come to a realization that I couldn’t push, lift, or move fast enough. All those years, RAF was impatiently waiting to be acknowledged. I finally did so with tears, conceding that RAF and I would be stuck in that revolving door many times more.

Read more at http://www.arthritisconnect.com/arthritis-articles/571-acknowledging-the-monster-of-arthritis-and-pain#3mT19XKtqSKcJEuY.97

April 13, 2016

Toxic Relationships and Chronic Illness

Living with chronic illness means minimizing the things in your life that make your symptoms worse.  Sometimes, it might mean eliminating people, especially if they stand in the way your happiness.  Other times, it means recognizing the ways in which you can minimize the effect of toxic people on your health and your life.

Generally speaking, a person’s actions are toxic to your health if their behavior makes you feel bad and/or sick on a regular basis.  Patterns of toxic behavior that are bad for your health include:

  • Intimidating you by yelling or being violent in any manner;
  • Consistently putting you down and sending a message that he or she is better than you.
  • Regularly telling you what he or she feels is wrong about you.
  • Gossiping about you behind your back.
  • Spending too much time complaining about others, his or her life, or you.
  • Attempting to take advantage of your kindness.
  • Making you feel guilty if you don’t do what he or she wants or expects.
  • Making you prove yourself often. Healthy relationships are give and take. But if you are doing all the giving, you jeopardize your health and happiness. Learn to put your foot down and don’t excuse toxic behavior.   You deserve to surround yourself with people who love and accept you and who make your life easier by simply being in it.
  • How do you preserve your health after you have identified people who are toxic to your health? The answer depends on the relationship that person plays in your life. In some cases, it is not possible to remove these people from your life but you can find ways to deal with these people without hurting your health.

Read more about managing toxic relationships at: http://www.arthritisconnect.com/arthritis-articles/594-recognizing-and-dealing-with-toxic-people-in-your-life#itrQUHlxErSmwXhy.97 

April 12, 2016

Maintaining Relationships with Chronic Illness

Friendships and other relationships drastically change once you have been diagnosed with a chronic illness.  You probably are no longer physically able to spend as much time with friends as you used to, especially when most of the activities you participated in before were tiring. As a results, friends that never made a huge effort in your life before quickly stopping keeping in touch. This is because those friendships suddenly required more effort and for those people to actually be proactive, by picking up the phone or coming over, for example.

It is a painful process of losing people but the more your health worsens, the more people you lose.   But you also get to choose which relationships to end as well.  Some people weren’t the greatest friends to start with and being sick has allowed you to see your life through a new and different perspective.

You now choose a calm, positive and healthy environment where stress is at a minimum rather than dealing with trivial events, petty concerns and fake people. You are trying to create a healthy lifestyle despite the suffering that chronic illness and pain has brought to your life.  And that means being proactive about who you surround yourself with.

Remember this is your life.  You are the one is who is sick and it is up to you to shape relationships in the way that works for your health and to control the factors that you can control.  Cherish the people that stick around and stop by to help out and who keep inviting you even though you decline their invites.

For the people who stick around, it definitely isn’t easy and there are expectations of all parties involved.  And chronic illness means continuous change so loved ones need our help in how to best help and what expectations we have.

Read more about taking the responsibility to stay connected with chronic illness at: http://www.arthritisconnect.com/arthritis-articles/478-staying-connected-with-arthritis#L6Z8DA25CrkYr4Rx.97

April 12, 2016

Your Medical Health Team with Chronic Illness

If you have a chronic health condition, you will need to work with your doctor to put together a team of support. It can be confusing and overwhelming to figure out what it takes to manage your chronic illness so teamwork is important if your disease or your symptoms worsen and to keep your disease managed.

Members of your medical health team could include various specialists, nurses, a psychiatrist or other mental health therapist, a physical therapist, an occupational therapist, a social worker, a nutritionist or dietitian, and your primary care doctor.  Each one plays a role in your healthcare, including with medical treatment, emotional health, rehabilitation to take care of yourself and do daily talks, practical support with insurance and managing financial care, diet, and strategies to stay as healthy as possible.

It is important to speak up about any concerns you have about your health and specific condition with your doctor or specialist.  Make sure your doctor is someone you are comfortable with and who respects and listens to you. Take into consideration your travel time, insurance coverage and other factors that affect office visits.

Once you have found the right person to treat you, be prepared to communicate with about the concerns you have and to follow advice he or she gives about your specific condition.  Make sure you are prepared for your appointments by tracking how you have been feeling and keeping an updated list of medications and contact information for other doctors you see.  Ask your doctor about your biggest concerns and speak up, even about issues that are hard to discuss, such as sexual changes, moods and bowel trouble.  Moreover, be concise and clear and don’t be afraid to ask for more information or clarification if you don’t understand something.  Most importantly, let your doctor know if you are feeling hopeless or helpless, are afraid of treatments, have had bad experiences with other providers or are confused by different messages from other members of your health care team.

If you are ever feeling overwhelmed, remember to reach out to a member of your health team.  You are not required to go at it alone and these people are available to support you so don’t hesitate to seek them out.

Find out more about the doctor-patient relationship at: http://www.arthritisconnect.com/arthritis-articles/299-the-all-important-relationship-with-your-doctor-8-tips-to-improve-your-medical-care#4DlLIpeAbV9A6IyM.97

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