Posted in Acceptance, Life in general

What is Like After Ten Years of Chronic Illness

I generally try to be positive despite the chaos living with rheumatoid arthritis (RA) and fibromyalgia brings to my life.  But the fact is being chronically ill affects every part of my life.  I barely recall a time where I wasn’t in pain or “sickly.”  But I have to live my life no matter what it brings.  But the reality is, I used to be able to hide it better than this.

I write about chronic illness and I give advice.  I am an expert, at least that is my most recent writing title says.  And looking from the outside, you might see this Superwoman – she is a single mother with two jobs that keeps going even she has nothing life inside her.  Whether it is chronic illness or life’s adversities, she has got this.  You don’t know it is a facade. You don’t know the physical and emotional struggle that superwoman feels daily.

Sometimes, I wonder if people look at me and think I struggle to walk because of my weight.  Now granted, I have gained weight from all these years of life with RA and fibromyalgia from all the medications I take and from not being as active as I once was.  But I am not that heavy, not enough for it to cause me problems moving.  But I wonder what is perceived when I struggle to walk – or use my hands, or when my brain feels foggy, or when I feel generally sick.  Do they think I am flaky or that I use drugs? Or that I am not smart?

I don’t know what others perceive.  I just know what I feel inside.  I generally try to be positive.  But I get depressed, severely and often.  This life isn’t easy.  Illness takes a part of your soul you can never get back.  You can hide behind a positive attitude for the world to see.  But deep inside, you have fears, like how long you will live or what your illnesses will do next. You worry about your loved ones – your children –who will care for them if you became disabled or if your illnesses end your life.

It is hard to not listen to those negative thoughts because in your case, there is a possibility they could one day be all to real.  I try hard to shut those negative voices but sometimes they get the better of me, especially when I am flaring, and it hurts to walk or when I can barely stay focused and awake because of the debilitating fatigue and brain fog.

Some days, it takes everything I have to do one household chore or stay focused to get work done at the office.  And the people in my life – coworkers, friends, family and even my children – they are all oblivious to my inner struggle.  I smile through the pain or I simply stay quiet and never vocalize my physical or emotional ordeal.   I am sure many of them care but they don’t get it. Besides, there is nothing they can do, and I don’t want to place that burden on them.

These diseases – mostly RA, I think – have taken 10 years of my life and there is many more years to come of my being “sickly.”   It is frustrating to NOT be in control of a very important aspect of your life. Nothing anyone says or does can change that. This my reality – it is what it is, and there is nothing I can do about it either – other than fight for as I possibly can.

Posted in Acceptance, Thankful Thursday, Thanksgiving

What Are You Thankful For This Holiday Season?

Happy Thanksgiving

This marks the sixth year without my brother around for Thanksgiving.  Six years ago, on Thanksgiving, he was in a hospital after being diagnosed with cancer.  Less than a month later, we lost him.  I obviously don’t want you to start out your Thanksgiving with a grim story about my brother but be patient, I am about to share just how thankful I am for the last few years.

While I am miss my brother and I hate that this is the sixth Thanksgiving without him, I am grateful for everything that has happened since his death.

I am thankful because I knew someone so kind and wonderful.

I am thankful that I ended a bad marriage and learned to stand on my own two feet.

I am thankful for two very happy and healthy children.

I am thankful for my health, even though it is not as great as I would like it be. It is better than I expected after almost 8 years living with RA and fibromyalgia.

I am thankful to be employed at a job I love and to work for two great people.

I am thankful for the people that supported my emotional health after my brother died.

I am thankful for the wisdom I have gained over the past several years.

I am thankful to be turning 40 next month.

I am thankful that my mother is still around.

I am thankful for my belief in the Almighty.

I am thankful that there is still good in this world despite all the bad.

Mostly, I am thankful because my brother didn’t care for Thanksgiving and hated turkey, because it makes me smile at his memory.  Tomorrow, I am going to make a roast in his honor because that is what he would have eaten for Thanksgiving if he were alive.

I am also thankful for all of you! Have a safe and happy holiday season!

Please share all the things you are thankful for this holiday season.

Posted in Acceptance, Life in general, Motherhood, Tough Choices

That was 21 years ago, and 2 husbands ago…

As I sit here on this rainy, cold, fall Saturday morning, I am thinking about where my life is now. And I realize something very important.  I am not the scared girl I was 21 years ago. I always had a rebellious side. I always wanted to be someone that I was told I couldn’t be but when it came down to it all, I did what was expected.  Do I regret doing what my family wanted? For a long time, I thought I did but for all the wrong turns my life, I am still right where I need to be.  See, if not for those obstacles, I wouldn’t be the woman I am today – strong, successful, determined, capable, and flexible but as stubborn as ever.

I have spent a lot of my life struggling to do what is expected of me especially when that is not what I wanted for my life. In hindsight, I never expected the lessons that came with life.  August would have been 21 years since I married my first husband. I sometimes I feel like the men I married took away 21 years of my life I can’t get back because neither marriage was good for me – especially for my emotional health. But then I remember what I got out of those marriages. I got my kids, and then, I realize that all my regrets don’t really matter.

At the time I was thinking about leaving my second husband, I was struggling with my chronic illness diagnoses, my brother’s illness, and then his death. Shortly after, my mother had a stroke and I was taking care of her. Then one day, I woke up and I realized how severely depressed I was. Depression was far worse than anything I had ever endured. It was lonely and scary, but somehow, though the grace of God, I made my way out of the darkest hole I had ever found myself in.  With therapy and medication, I find a part of me that for so long missing. The strong me – the “me” that hated defeat, that didn’t need acceptance, and the one that felt enough for herself and for God, and didn’t need to be for anyone else.

Sometimes, I would love to go back to a time when it was just me, young and not stuck in my life but seriously, that was 21 years ago and 2 husbands ago. I will never be that girl again and while looking back is bittersweet, I wouldn’t trade that girl for the woman am I today (although I wish I had her health).  I recently spoke to a former teacher of mine who was not the least bit surprised how much I have overcome.  He said that he always knew that I had it in me to rise above and make the best of difficult situations.  He reminded me that in the end I am still me, just all grown up and upgraded.

The truth is, I just took the long road to get to where I am today. I have struggled to get here and I have questioned myself, God, and my faith many times.  I still struggle, have setbacks where I second guess myself, and I still struggle with my God and my faith.  The only difference is I don’t struggle for as long. I don’t second guess myself as often, and I don’t let people get into my head. And while sometimes, I wonder where God is I still lean towards Him especially during hard times.  The reason that I have changed is because I have learned to know who I am, what I stand for, and mostly that I am enough.  I will never be the girl I was 21 years ago and 2 husbands ago and I accept that.

And for all the times I have wondered where God was when I struggled and fell, he was right there by my side lifting me up. How else would I have gotten up?  I don’t know what God sees in me but He sees something, and He has made me believe that everything is possible, especially when I believe in Him and myself.

I spent a lot of my life trying to be accepted by others. I have taken blame for things I didn’t do by simply not responding or defending myself.  I have forgiven even when I have been hurt so badly. I have learned that I have to forgive if I expect to be forgiven.  I have given people help that turned around and stabbed me in the back, or that forgot my constant kindness no matter how many times they hurt me.  In those moments, I question my choices and then I remember that the reason that I bounce back from setbacks is because of the person I am, and that is what God sees.  He sees me hurting, struggling, stumbling but trying even when I have nothing left to give.  But He also sees something in me that I don’t see. I don’t know what that is, but who am I to question the Almighty?

I am not the girl I was 21 years ago, or the woman I was 5 years ago.  Both were weak, self-sacrificing in the name of acceptance and thought that people cared about their tears. But I was sadly mistaken. The girl I once was grew up and while she is still willing to help others, she is cautious and no longer lets anyone in. She kept secrets for others, even though they didn’t keep hers.  The people she thought she could trust with her secrets reminded her that no one can be trusted, and that her secrets should be kept to herself.  She now bares little no resemblance to the girl from 21 years ago and 2 husbands ago.  She is gone and you know what, the woman she became, she is done looking behind her, and she is focusing on looking forward.  The past is the past for a reason, right?

Posted in Acceptance, Experince, Life in general

Stop Being Selfless and Self-Sacrificing

Months ago, I was told I needed to be selfish and less selfless and self-sacrificing.  I took that advice to heart (although I was criticized by the same person for finally taking that perspective).  It took me a while but one day, I realized that it felt good to be selfish and put myself first once in a while.  I stopped caring about who my actions or feelings upset because I was not causing hurt to anyone.  I became happier because I wasn’t sacrificing myself in the process.  At first, putting myself first felt weird and it carried some guilt with it but with time, I realized that if I didn’t do it, people would continue to step all over me.

Now, my stress levels are down and well, people are unhappy.  But the fact is that they were unhappy before.  I thought that my catering to others, I was making them happy but all I got was hurt.  I catered to the point of my own unhappiness.

I thought by self-sacrificing meant being a good person and someone who helped others.  I sought acceptance of others, rather than self-acceptance, and that was hurting me more than anything.  I was tolerant of others and their faults, was afraid to be harsh because I hated that for myself and I stuck with others even when they weren’t there for me.  Moreover, I always suffered alone and shouldered my own burdens alone.  I never asked for help and I hated being fussed over.  I endured. I was patient.  I tolerated.  I was considerate, ethical, and honest. I was generous and was willing to give the shirt of my back and never waited to be asked. All for what reason? For acceptance? I self-sacrificed for acceptance?  Does that make any sense? Why did I do that? I don’t know anymore.

All of our lives, we have been told to give.  We are told to share since childhood. Our religions tell us to give others and we are told God loves us the more we give.  Every charity makes us feel so bad we feel we have to give.  Some of us have taken one message out of this – give until hurts and then some. Of course, giving isn’t wrong but if you are always giving and never receiving, then you are giving others permission to expect permanent things from you.  If you are always the one who continually forgives and always bending over backwards for others, you are sacrificing your own happiness in the process. After all, you are entitled to receive and put yourself first sometimes.

I am not saying to stop giving or helping or apologizing. I am saying stop being taken advantage of.  Stop being so selfless and self-sacrificing.  Step letting others step all over you until you have nothing left to give.  I am talking from experience – a whole lot of it!

We train people to take advantage of us and it has taken me most of my adult life and a whole lot of therapy to understand that.  If you are over-giving and people are not grateful, appreciative happy and caring towards you and expect more, then you have done all you can do and then some.  I have learned to the secret to knowing when you should and shouldn’t give is by listening to your heart, your body, your mind and your soul. If you are giving to manipulate, then that is not healthy and if you are giving for acceptance or second chances, that is just as bad. Your heart, mind, body and soul will speak for you when something doesn’t feel right so listen carefully.

When you feel overwhelmed about giving or you feel you have done all you can do, take a step back and observe the imbalance.  If you don’t like what you are seeing or feeling, get your courage on and change the situation.  You are responsible for your own life. Every adult is responsible for their own life and it is not your job to be selfless and self-sacrificing to fix or accommodate other adults.  For me, that understanding is a major breakthrough that actually feels really good.

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Posted in Acceptance, Chronic illnesses, Life in general

What I Really Mean to Say

Living with chronic illness and pain is something that isn’t easily understood by people who are not going through the same thing. Moreover, the effects of illness are an emotional and personal daily battle.

Most people have this notion that if you look fine, you are feeling good or having a good health day. Many also don’t realize that even when we say we are fine, we really are not. At times when I say I am okay, I really wish I could share with people who don’t understand my ordeal how chronic illness and pain truly affect my life.

Every now and then, when I say I am okay or I am fine, I really mean to say:

(1) I hurt more than I can effectively express. The physical part is often easier than the emotional part. I have people in my life who don’t believe in the extent of my sickness and pain so I keep how I am actually feeling to myself and experience has given me many reasons to do so. I have had people who I once called friends and loved ones who have walked away because my being sick was too inconvenient for them. While I have learned that their actions had more to do with them than anything I did, it still saddens me because I would have been there for them.

I don’t have a lot of emotional support so I seek help therapy and I look for solace in prayer and in the things and the people that I love. These things have allowed me to a stronger person – both in conviction and in the ability to see past my limitations. So, yes I hurt both physically and emotionally but I have found strength I never thought I had.

(2) I am scared. I have read up on about Rheumatoid Arthritis (RA) and Fibromyalgia (FM). I know there is no cure for either and I don’t see remission in my future. I also know that I will never return to perfect health. I worry about what the future holds and where I will be in ten years or twenty years. I am only 37 so I have a long life with RA and FM. I worry about how I will take care of myself if things get worse and who will take care of my kids. I have valid questions but I know that these questions don’t have concrete answers.

Taking life one day at a time is all I can do and that is scary in of itself. I will never be my former self but I am working on maintaining some level of sanity when it comes to my health. While I am scared, I try to focus on the here and now so that I can make the best of my life with chronic illness.

(3) Life is just not fair. I am not always able to make plans because I don’t know if I will be able to follow through. I don’t know what the future holds because I have to take life as it comes. I can only be hopeful and I am. Chronic illness has taken a lot from me but I have taken a lot back.

No one said life was fair but it is worth living. While I truly believe that, I just sometimes want to vent and say that life just isn’t fair.

(4) It is not my fault. Being sick is not my fault but sometimes I feel like it is. I worked hard at every aspect of my personal life and professional life before illness and even harder after illness. I am a good parent and my kids are turning out just fine but sometimes I feel guilty that they can’t have the parent that I wish they had. I was a faithful and loving spouse but my spouse wasn’t. As a result, my marriage ended and while I know that had nothing to do with chronic illness, it happened after I was diagnosed and sometimes, it makes me second guess myself. I have been a successful employee and I have been a great volunteer in the community. I am a patient advocate and I am good at what I do. I have accomplished so many things despite and with chronic illness.

What went wrong – my getting sick – that wasn’t my fault and the bad things that happened after weren’t my fault either. All the good things were due to my hard work. Nonetheless, if I could I have protected my health, I would have done everything in my power to make sure I stayed healthy but I couldn’t. Further, I had no control of the awful things that happened afterwards. That just goes back to life simply not being fair. So, I didn’t mean to get sick – I really didn’t – that’s all.

Right now, I am feeling better than I have been in a long time – both physically and emotionally. Sometimes, I actually feel fine when I say I am and other times, I am not fine at all. When I am not feeling well, I have things to say. Yet, it is not always easy to say them.

***This post was originally a guest post at

Posted in Acceptance, New Year

Looking Forward into 2014

new yearNot long ago, my thoughts and my emotions revolved around everything but being sick.  But in 2008, I went from being healthy and active to being miserable overnight.  Everything that I ever had control of changed.

Being sick, I realized that chronic illness and pain sidelines you and the fatigue takes away all your energy, leaving you unable to function and or even to focus on what matters. Every day activities such as housework or grocery shopping can be difficult to do.  In fact, there were times where I had to walk out of the grocery store leaving behind a full cart because I was too worn from just walking around the store.  I recall spending days trying to avoid activity in fear of my symptoms worsening.

In 2009, I realized how much I hated living this way and I knew something had to change.  I didn’t have to be a sick person and I could still be the person I was prior to my diagnosis.  I was still the woman who had dreams for myself and for my children.  I could still feel this woman longing to reconnect to her former self.

In the nearly six years since being diagnosed, my life has changed too.  My marriage fell apart because it didn’t survive chronic illness and a whole lot of other things. I lost my brother to cancer and I almost lost my mother to an awful stroke. It has been three years since my brother’s death and my mother has, for the most part, recovered from her stroke.  And despite depression and with a lot of hard work and soul searching, I managed to come back on top.

Living with chronic illness, so many of us have a tendency to dwell on the past that we miss out on the blessings of the future.  For a long time, that is what I did.  But one day, I realized I could change the one thing I had control of.  I reminded myself that life still had meaning despite chronic illness.

Writing this blog became my outlet for my feelings and frustrations about rheumatoid arthritis and fibromyalgia.  The more I wrote about how being sick affected my life, the easier it was to let go.  Doing so meant I was no longer looking back at and dwelling on the past.  Moreover, I changed my attitude about what was possible and what wasn’t.

Changing my attitude about my illnesses allowed me to focus on feeling better.  I changed my diet, made sure I took my meds, and did my best to be active.   Further, I connected with others living with similar struggles and realized I didn’t have to fight this alone.  I also became a leader in when it came to educating and reaching out to others living with arthritis and fibromyalgia.

I am so blessed with supportive friends and loved ones that I have gained over the past few years.  I am feeling better even though I am not in remission and I likely will never be but my symptoms are managed and last days or hours rather than weeks at a time.  I am lucky, hopeful, and happy and where I need to be.  I am no longer looking back and I am moving forward right into 2014.

I wish all of you a happy and healthy New Year with your loved ones.  I hope that 2014 brings you so many reasons to be blessed. I hope you continue looking forward and that you never have to look back.

Posted in Acceptance, Life in general, Tough Choices

Acceptance in Progress

Acceptance is one of the hardest things that we have to deal with at least one point in our lives.  Since the beginning of this year, I have had to embrace a new normal.  It has been a difficult undertaking for my children and me.  Our lives were a certain way for so long and then they suddenly changed. Moreover, there had been so much havoc in our lives for the prior two years that change was inevitable.  I had to make a choice to either deal with the same old heartache or to move forward and rebuild our lives.  I chose to move forward.

I spent a lot of time trying to heal and I had almost forgotten that my children were healing too.  After all, what had transpired had affected us all and we all dealt with it in different ways.  They say that children are resilient when it comes to change and I want that to be true but as I watch my children evolve over the past few months, I am not always sure. I just know that we are getting closer to what “normal” is and what it will continue to be like.  We are getting there but it is a work in progress.  Our acceptance of our current life and what it can be is a work in progress.

For me, I recently came to an impasse in my battle with depression and the reasons for it.  I finally accepted the fact that I was angry – at specific people, events, and circumstances.  I always said I was not angry and I thought by not being angry, I was taking responsibility for my actions and my choices.  It was not until I finally admitted that I was angry that I realized that I could truly heal.  After I admitted my anger and why I was angry, I felt sad.  Even though I felt my anger was justified, I hated that I could be an angry person.  The more I thought about it, the more I realized that anger is normal emotion. I made choices based on what others expected of me and the lesson that I learned was that, I wouldn’t be happy if I continued down that path.  I need to be smarter in the future so that anger or unhappiness doesn’t overcome me in a negative and destructive way.

I am learning to accept a lot of things but mostly, I am working on learning to accept that I am enough.  I think that has been hardest part of my journey.  I have spent a lot of time giving and giving because I felt that no matter what I did it was never enough.  I felt guilty that I was sick and that my kids had a sick mother and I kind of felt that I wasn’t giving them enough.  I also worried about my own health when it came to my mother – if I am sick, who will take care of her?  I even worry about my relationship with the Almighty.  Is what I give to God enough and does God think it is enough? I struggle with being enough as a professional and as a human being.  A lot of that has to do with how I was raised but mostly, it has to do with the people I have let in my life, specifically the people who have hurt me.  What have learned about hurt is that it isn’t about me, it is about them.  We all have choices when it comes to hurt. We are either doing the hurting, we are taking  hurt or we are strong enough to walk away from it.  I have been made all of these choices at some point or another and I am learning from these experiences.  I am looking at the lessons learned rather than the hate that they have left behind and I think I am wiser for knowing the difference.

I am a work a progress but I am getting there.  The next time I open the door to a new chapter in my life…I want to be ready and strong enough to believe I am enough.  And right now, it is just acceptance in progress but with each passing day, I am more confident that I can reach a point of contention with acceptance.