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 Chronic illnesses, Motherhood, Tough Choices

Another New Year is Upon Us


As many of you may have noticed, I have not blogged here in a while and I haven’t done it that often in 2014. I can honestly say that 2014 has kept me busy. I have focused on my freelance writing and I had also posted at my single mom blog, in addition to my full time job. I have also been considering making some professional changes. I don’t want to go into any detail but it is something that long overdue.

One of things that I put aside was finishing up a novel. I started writing one, finished it and never got around to actually finalizing it.  I wrote another and blogged it.  I finished it as well but never really got around to editing and updating it. It is not that I don’t want to finish and publish a book. It is my dream but my dream has to be put on hold right now.

There are other things that I recently decided are important for me to work on. My RA and fibro have not been as well managed as they were previously. I don’t know if this is a result of recent stresses or just because I have started my seventh year after diagnosis living with diseases. I have also decided that while I had counseling in the past, I am struggling with other things I need to work on. I am smart enough to know when I need to talk to someone and when I need to work on myself. I am always willing to better myself because I don’t I can’t be the mother my children need and deserve.

In the past, I struggled with the setbacks that life handed me – chronic illness, my brother’s death, the end of my marriage, my mother’s stroke and then just trying to be alone with my kids and my life. I struggled with being enough.  For the longest time, I thought I mastered my biggest demons.  I mastered a lot but I am still not the best version of myself. I need to be the best version of me. I feel like I recently lost sight of who I am. I feel like I didn’t prioritize what was most important.  If I had, I wouldn’t have made a mess.

With a New Year just around the corner, I am working on making changes. I probably won’t have much opportunity to blog here but I haven’t lost my focus. I am just trying to figure out who I am again because I am feeling like I have lost that person.

Happy New Year to you and your loved ones. I hope 2015 brings you much good health and happiness.

Posted in Chronic illnesses, rheumatoid arthritis, Tough Choices

Wake-up Call


This past week has shown me how I need to learn to prioritize my health. I have been sick with the flu and I was sicker than I have been in a long time.  I have overestimated myself. I have gone back to taking on more than I can handle and dealing with stresses as if they are the norm.

I started getting sick eight days ago on a Friday.  I ended up leaving work at around 1 pm because I was feeling tired and feverish.  I figured the weekend would help to recuperate.  I seemed to get better at first but Monday came along and the flu symptoms started to creep up on me once again.

Come Wednesday and I can barely get out of bed.  Of course, I overestimated myself because I quietly told myself “it was just the flu” and all I needed was one day to recuperate and I would be back at work the following morning.  But the symptoms kept coming – swollen lymph nodes, sore throat, headache, body aches, and stomach problems.  But I told myself, tomorrow would be better.

By late Wednesday afternoon, I started experiencing severe abdominal pain I tried to convince myself would pass. See, I am very stubborn like that.  After nearly an hour of dealing with pain that radiated from my abdomen to my chest and my back, I realized that I needed to get to the hospital.  Again, as stubborn as I am, I got my kids and drove us to the ER.  I thought they would figure it out and send me home.

I underestimated how sick I was.  I arrived at the ER only to find myself with a blood pressure of 215/165 – a number that even shocked me.  I did not even realize my BP was up, let along that high.  I had been diagnosed with borderline high blood pressure or prehypertension previously and I have been very good about watching my salt intake and my diet so this I could not have predicted.  I really thought I had things under control but I was sadly mistaken.

I have a bad habit of overestimating and even underestimating myself and my abilities. Of late, I have been taking on more than I should and I have been struggling to handle stress.  This experience was my reality check. I spent a night in the hospital and my kids spent the night at their aunt’s house.

My biggest fear has been for the longest time that I would be a burden on those I love. But now, my biggest fear is my children losing their mother. How could I let myself get this sick? I don’t know but I know where I stand right now.

The hospital wanted me to spend another night there but I wanted to come home to my boys and I also didn’t want to add the stress of another night to the hospital bill.  I spent most of Thursday evening and all of Friday just trying to get better.  I now have to take a blood pressure medication daily but I am grateful that things didn’t get worse because with how high my blood pressure was I am lucky to be alive.  Between the flu and my RA meds and all the cold medications I was taking, I must have had an angel watching over me.

Those of us with autoimmune diseases need to be aware of the complications our illnesses pose. The complications depend on the disease and the side effects of medications used to suppress the immune system can be quite severe including infections that are hard to manage.  With RA, the complications affect the skin, eyes, lungs, blood vessels and heart and include susceptibility to infections and anemia.  Systemic inflammation puts RA patients at an increased risk for cardiovascular disease. Having RA also increases your risk of a stroke.

I have been lucky that my RA has been under control – at least I thought it was. I am fortunate because after six years, I show no signs of deformity.  But my blood pressure and my susceptibility to illness remind me that my RA really isn’t under control.  For me, it is my wakeup call. I need to go back to being serious about my health and managing stress.

I thought I was handling myself pretty well but stress has been a dominating factor in my life lately. I let things and people get to me and I shouldn’t.  I have made a decision that the only solution I have is to minimize or remove these people from my life.

I have to do what is best for me and my children.  Because, my kids need me to be their mother and they need me healthy.  My hospital stay affected them too. My five year old hasn’t left my side since I got home and my teen keeps checking on me and reminding me that he loves me.  I owe it to them to focus on being healthy so that they can have the best mother I can possibly offer.

Posted in Life in general, Motherhood, Tough Choices

I am okay


im-ok

There has not much going on in my life of late.  I did get that promotion at work and I was training for it, training my replacement, and going my actual work so it made things quite busy and stressful for me but I made it.  I always do.  Other than all the craziness at the office, things have been quiet.

Fall is my favorite season but it has been cooler than anticipated so I have not been able to enjoy it.  We actually had snow about a week ago but we are back to normal temperatures this week.  My joints are achy in the morning due to the cooler weather and also because I am waiting on my Humira.  I am delayed at least a week at this point (if not more, I lost track) because of an insurance change and waiting for that approval.  I don’t know that my joints can take any more than a few days.  The last thing I want is a major flare up. I don’t miss the days of bad flare ups.  To me, some pain is normal but I have been fortunate this year to only have had two or three major ones.

Home life is quiet and my boys and I are doing well. I have just been trying to focus on the here and now and make every moment count. I am still doing my freelance writing and my advocacy at my Alliance Health sites. Working on my book has been put in the backburner until I find the time and focus to work on it.  I am not rushing it.  Good novels don’t happen overnight.

It has been quite some time since I have been able to say this but I am content.  I am happy and I am okay with where I am at in life. I am not where I thought I would be but I am right where I should be.

All the things I have seen and endured in the past few years have led me to a place where I know I truly belong.  And I wouldn’t change a thing because if it wasn’t for a lot of heartache, loss, patience, stress, and life lessons, I wouldn’t have gotten here right where I belong.  I am thankful for every lesson and every tear. I am stronger than ever and still able to fight, except I am glad that there isn’t a fight. I am tired of fighting. I am okay with there being no obstacles and my focusing on what is important right here and right now – my kids and our happiness.

I see greener pastures ahead and I see them for the long term. I am finally where I should be in life and I don’t mean in my career or my financial situation.  I mean in the grand scheme of things.  I, all of all people, know that life isn’t easy but it is so worth it.  It is so worth fighting to be happy and get past obstacles and people that stop you from being happy.

I am okay. And I am happy. And I am at ease. And I have not been able to say for a long time.  I am okay with where I am at because I know what it is like to be on the other side.  Depression is so ugly and it sucks the life out of you.  It did for me and I would not have wished that on my worst enemy.  But the worst is behind me and I sure hope it stays there.  And I am looking towards the future with open arms and heart full of dreams.

Posted in Tough Choices

What Breaks You Makes You Grow


emotions-297x300As many of you know, I have been writing a book. Well, as I write my book, I see pieces and parts of my life going into book and sometimes, that scares me. It scares me because I am reminded events in my life that made me grow.  What is consistent with the events that stand out is the growth. What isn’t consistent is how these events have affected my life.

We all have life experiences that broke us, tore us, or shattered us.  We have made mistakes and we have made good choices. We have been lied to and we have lied. No one is perfect and we have either been burned or we have burned others.

As I develop the characters in my book, I think about the people that I have come across in my life. There is one character that stands out. That character was born out of someone in my life who loved me dearly but who I chose to let go.  For a long time, I thought that if I could turn back time, or if this person would come back in my life, that somehow my life would be complete but I know better now.

Looking at my life, I am not sure that person would fit into the life I have now but it doesn’t stop from wondering “what if.” There are a million what-ifs in my journey but one thing is for sure, the what-ifs are not as important as how I have grown as a result.  That person loved me at a time when I need to be loved but I couldn’t be with that person, not because I didn’t want to be, but because it was never meant to be.

Another character in my book was created because it is the person I long to be with.  This character isn’t real but it is a person that I would pick if I could. See, as independent and as strong as I am, I still want a hero. I still want someone who takes cares of me even when I think I am too stubborn to be taken care of. That first character was my past and that second character is where I long my life to be now.  Realistic or not, my life is a journey of growth and I have made friends and enemies.  For everyone who has come in my life, they left me with something but good or bad, those things have developed me into the person I am now.

The life I have now may not be the life I dreamt about as a little girl and it is not necessarily the life that I dreamed about as an adult. I don’t think anyone of us ever get the dream life. I think we simply get what we were always intended to get.  What stand out are the very things that break us and build us because they are what make us who we are.

For a long time, I thought that I had to hide what I have been through or what it has done to me.  The fact is, I have lost my grip, I have tripped and I have fallen but most importantly, I have gotten up. I have also found many instances where I could not lean on anyone. I was alone to stand up for myself and to fight what mattered.   As I have gotten older, I decided that I have nothing to hide. I know who I am and I am human. What I have been through is nothing to be ashamed of. In fact, how I have handled myself is admirable and I am proud of that. Finding that pride has not been easy but with each passing day, I have learned to be proud of what I have accomplished and the strength I have gained as I have fought some really tough battles. The emotional part not only involved overcoming my obstacles but it has also and continues to involve letting go of what others think of me.  I think that is the hardest part because I have spent my whole life being told that others have to approve for me to be happy. What a misguided perception I had.

My book might be a work of fiction but with every stroke, I see people who have come in and out of my life. Some friends, some enemies, some love interests and some family or those I consider family. I see parts of me that I love, or hate, or that others didn’t like about me or that I despise or admire in others.  I see growth in me that happened because life forced me to grow. I don’t always see myself like others my age because what I have been through is unique and it has made me older and wiser.  Sometimes, I even feel older – not physically, just emotionally and intellectually.

I just know that what has broken me has forced to grow and as a result, I have no reason to ever look back. Looking back means I don’t move forward.  I am especially not looking back to anyone who has judged me or disliked my choices. I have done what I thought was right for me and for the people I love. Right now, I am struggling with reinventing myself because I am scared of what that means.  When you try your whole life to do what is expected and then that fails, you try to understand that the situation was a failure, not you. I don’t see myself as a failure but the choices I made to make others happy set me up for failure.

I am strong enough to admit where I have failed and I am learning that who I am should be who I want to be not what anyone expects me to be. I have grown and I grow with every word I type, every page I finish and every chapter I finalize.  Bluntly put, I no longer care what anyone things of me. Those who love will accept my choices and don’t who just have an opinion know exactly where to put it.  Hey, it’s not my fault that what has broken me has forced me to grow. What else could it have done?

Posted in Chronic illnesses, Fibromyaloga, rheumatoid arthritis, Tough Choices

Strength is a Constant Battle


I consider myself a strong woman.  I am strong in my convictions and I have strength of character, spirit, mind and body. I honestly believe that if you have strength it is something admirable but I also think having a chronic illness makes strength a disadvantage.

Chronic illness has had its effects on me and as the fall and winter months approach, I know that I will not be moving like a “healthy” person for long.  I feel that I am physically strong considering all I do despite the pain that I move with daily.  And to the outside world, I look fine but I don’t always feel fine.

While I don’t have a handicap tag for my car, sometimes I feel like I probably need one but I feel the looks from people who don’t think I “look” sick discourage me from getting one.  I don’t blame them for that because looking in the mirror, I see the same thing.  But people don’t know or understand that I am in pain.  They don’t see it because I am not necessarily limping or hunched over or using an assistive device, but I am in pain and I am tired and I ache every day.  Between the pain from rheumatoid arthritis, fibromyalgia and pain from neck and back injuries from an auto accident, my pain levels are constantly changing.  Some days, I am at a 2 and other times, I am at a 10 but I am never not in pain.

I understand better than anyone that I am sick but I am strong enough to carry myself with a mindset that is resilient – both emotionally and physically. I am proud of myself for my strength and I am smart enough to know that also means taking care of myself.   Although, I find that the strength that I display strength can force others to see me as happy or healthy and that is not always the case. I struggle but I struggle mostly with showing that I am NOT struggling.  In all fairness, I don’t want people to feel sorry for me but I don’t necessarily think their perception of me and how I physically and emotionally feel is honest. People don’t ask how I feel, or how I am doing or if I need anything because they think I am handling myself just fine.  This is where my strength are to my determent. If anything, it can be frustrating scenario.

I am a self-sufficient person and sometimes I am fine but sometimes I want to be asked how I am doing or I want someone to offer to help.  I struggle because I don’t want to be seen as weak or a burden on anyway.  Most of time, people forget to ask if I need help because I appear so strong and I have no room to complain because it is mostly my fault.  I don’t like to ask for help and I hate not being strong.  On that hand, I don’t see needing help as weakness in people and I am always the first to jump to help others. I just need to stop telling myself that I can do it all and I need to stop seeing that my needing help is a weakness in me.

Strength is a constant battle for me.  It is a daily battle just to stay strong when it feels like your body is constantly rebelling against you. I am proud that I am strong and that I am independent but I just sometimes wish that people understand that my looking fine doesn’t mean I feel fine.

Posted in Life in general, Moving Forward, Tough Choices

What is Next?


next-step

I want to start this post with a quote from Denis Waitley, an author and a motivational speaker.

Don’t dwell on what went wrong. Instead, focus on what to do next. Spend your energies on moving forward toward finding the answer.

I chose this quote because I have found myself in a rut lately. There have been some drastic changes in my life and the smart thing would be to move forward and focus on what’s next for me.  Rather than doing than doing that, I am dwelling on the past.  It is hard when you planned your life to be one way and quite the opposite happens.  Yes, I have a tendency to be a control freak and I am fairly certain it got worse after rheumatoid arthritis and fibromyalgia came into my life.

My life has changed a whole lot since chronic illness became my everyday reality.  I have learned that living with a chronic condition cannot stop me from doing what I need to do. I had to give up my dream of going to law school because of being sick but I went on and pursued a master’s degree in legal studies.  My passion for the legal field never changed.  I just compromised.  In addition, I went on to advocate for arthritis and fibromyalgia and I started to write three monthly articles for the health support sites I manage.

I just keep moving forward and there were some days where I had no idea how I did it. While there were setbacks, I did what I needed to keep my diseases from taking over my life and my future. But other stuff happened that was out of my control that made living with chronic illness look easy. My brother’s death, my mom’s stroke, and marriage problems and one day my world came crashing down. Depression is an awful and ugly thing and I wouldn’t wish it on my worst enemy.

How could I have not gotten depressed? I was working so hard at being so strong for my kids, for my mother, and for appearances sake. The last thing I wanted was for people to see me falling apart – not my friends, not my family, and not my co-workers. Because Lana thought she was invincible. She thought that she could just put on a game face and show the world she was strong. She wanted so desperately to set a good example for her children but her logic was flawed.  She was teaching her kids the wrong thing. Rather than teaching them that true strength means seeking support and asking for help, she was telling them to carry all the world’s burdens on their shoulders. But I have come a long way from that. I found out what happens when you carry all that burden and you don’t seek support.

I really have come a long way from being diagnosed with depression and I have made great strides in better dealing with the challenges that life throws at me. Between medication and therapy, I feel balanced.  I have my good days and I have my bad days, but my good days are more often. What I have struggled with the most after all this change in my life is how to move forward.  I am rut and I don’t know what is next for me.  I am educated and I have no further plans to get any more degrees.  I am working hard at my job and hoping that I can move up soon and I am hopeful that this will happen.  I am also advocating at my health support sites and the company that owns the sites is very happy with how I manage the communities and also, my capacity as a writer. I think that they have given me a good stepping stone for moving forward but I am struggling with who I am now.

I have recognized myself for so long as a mother, a wife, a daughter, a sister, an aunt and friend but I have never taken the time to see myself as more than that. A chapter in my life has closed and while I am still a mother, a daughter, a sister, an aunt and a friend, I am no longer someone’s wife and it really saddens me. I moved forward because I didn’t really have a choice.  I was raised in a culture where marriage and family out prioritize anything else. While I am glad to be moving forward and I am relieved that chapter of my life is finally closing, I am struggling with who I am. I don’t know what it is next for me. If one more person asks, I just might punch that person in the face. I am kidding but in all seriousness, I don’t have the answer and it frustrates me that I don’t. (I can hear a certain dear friend telling me that I am not supposed to have all the answers.  Yea, you know who are!)

For so long I have done what I am supposed to do.  I did what was expected of me even though it was not always what I wanted. Now, I know that I don’t always have to do what is expected. I need to do what makes me happy even though it does not make everyone else happy.  I love my mother and I loved my father when he was alive (and I still do) but they came from a culture that stressed family over an individual ideal. I have dealt with that my entire life and my life has resolved around my family’s feelings about the choices that I make. I have started to rethink my understanding of what is important. I have grown up and I now realize I have made choices that pleased others and didn’t always make me happy. That realization is scary but acknowledging can allow me to stop seeking approval.  I got to do what makes me happy.

So, what is next?  I am starting to think about that. Where do I go from here?  I don’t know what but tune in and you are sure to find out.

Posted in Chronic illnesses, Life in general, Tough Choices

I won’t tell anyone it gets easier


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I am going on five years since I was diagnosed.  For those of you have been following my blog for the past four plus years, you know that chronic illness and life have thrown me some major curveballs.  Some of life’s challenges had nothing to do with chronic illness and some of them did.

When I was first diagnosed, I wanted someone to tell me that things would get easier and no one would.  I didn’t realize that all these people were well meaning and they also didn’t know how to answer my questions.  The course of rheumatoid arthritis (RA) and fibromyalgia is different for everyone. In all honesty, I wish someone would have just said to me, “It likely won’t get better. It may get worse but it may not.”  However, I am pretty sure that this information wouldn’t have made a lot of sense five years ago but it would have given me some kind of measuring stick.

September marks five years since I was officially diagnosed with RA. I was not diagnosed with fibro until months later.  The first year to year and half were pretty bad for me as I learned to navigate my new life with chronic illness and pain. I remember some of my earliest posts and how they reflected what I was going through.  A post, in particular, stands. It is titled “My Life May Not Be Normal, But I make Lemonade Every Day.” It stands out because it reminds of a time where my RA wasn’t controlled and where I had not yet accepted RA as a part of my life.

Here are a few excerpts from that post:

“When I watch the world move hastily and with ease, it really gets me real emotional. I have forgotten what it is like to be healthy, and not in pain. Mornings are tough for me. I usually have not gotten to sleep until real late because of the pain and the sleep problems associated with fibromyalgia. I sometimes feel like both these conditions have dominated all my 33 and half years on this earth.”

“Some days it is better, some days worse. This morning it was very difficult getting my seat belt on because my hands hurt very badly. Driving to the daycare, I watch people walking and riding bikes and I know that these are things I cannot do. The pain is too bad. I look at my boys, ages 11 months and 9 years old, and I wish I could spend more time with them instead of being tired and in pain all the time.”

“For me, that life looks a movie that my DVD plays over and over as a constant reminder of who I used to be. I remember my nine year old when he used to tag along to the gym with me two years ago, and how he couldn’t get stay out of trouble. That me no longer exists, and it hurts more than the physical pain does. It is even painful to hold the baby. I am lucky to have my nine year who is the best big brother in the world. While I would I love to curl up in bed all day and hide under my covers…Before my diagnoses, I knew I would be successful at everything I did, but now I just want to make it through the day and provide for my family the best that I can.”

I look back at that post and I wonder how I made it through.  I know that living with RA and fibro doesn’t get easier. But it was a whole lot worse in August 2009 than it is now. While living with RA and chronic pain hasn’t gotten easier, I have gotten better at dealing with it.

The truth is living is the chronic pain and illness isn’t easy and it gets a whole lot harder as your disease progresses. What gets easy is how you deal with it. I have learned that I have so much to be grateful for despite chronic pain and illness.  I have learned that the best and worst are in my control.  See, I have a choice. I can either dwell on what’s happened or I can focus on keeping my symptoms at bay by taking my medications, watching my diet, and being active. Some days are harder than others but I am confident in my ability to keep moving forward and to keep fighting the fight.  However, I know better than to tell anyone that it gets easier.

Posted in Life in general, Tough Choices

Catch My Breath


approval

Every time the Kelly Clarkson song, “Catch My Breath,” comes on the radio, my four year old says, “Mom! That is your song!”  He says this because he knows I really like the song but he doesn’t realize how much I can relate to song and how much it speaks to me.

The first time the song gets a reaction out of me is probably in first set of lyrics. “Learning how to react; I’ve spent most of my time; Catching my breath, letting it go, turning my cheek for the sake of the show; Now that you know, this is my life, I won’t be told it’s supposed to be right.” I have taken a lot of crap from a lot of people and I have spent my whole life being told what I am supposed to do and who I am supposed to be.  I have turned my cheek for the sake of appearances and did what I was supposed to do, not what I wanted to do.

For a long time, I have known that trying to make others happy would never make me happy but I did it anyway hoping that I was somehow wrong.  I always did what I was supposed to do and never really thought about what I wanted.  In the past few months, I have gotten a rude awakening because I have finally stopped wanting to make others happy.  I just want to make myself happy.

It is my life and I don’t want to be told what’s right especially when I already know what’s right. That is why these next lyrics are so important.  “Heavy heart, now a weightless cloud; Making time for the ones that count; I’ll spend the rest of my time; Laughing hard with the windows down; Leaving footprints all over town; Keeping faith kinda comes around.” I am working on trying to be happy without having to please anyone else.

Life’s challenges have forced me to realize this is my life and no one else’s.  The fact is I have faced life’s challenges alone and no one’s heart broke but mine.  No one ever picked up the pieces for me and no one was strong for me.  In fact, I made a choice not to lean on anyone for fear of judgment.

I have been dealt some heavy cards since my diagnoses of RA and fibromyalgia.  Those of you who have followed my journey for the past four plus years know what I have been through.  Despite everything, I have endured and triumphed.  The one I struggled with was my own happiness.  I could not be happy trying to make others happy.  My happiness took a backseat.

So, I have done what I am supposed to do and what others expected and guess what, it didn’t work. I say this mostly because I need to remind myself the next time I almost make the mistake of sacrificing my own happiness. Maybe I am also saying to make a point that I am tired of doing it and I am tired of people in my life not getting it.

I am human and I am entitled to be happy.  Their approval is no longer needed. It is time for me to catch my breath and do what’s right for my kids and me.

Posted in Chronic illnesses, Life in general, Tough Choices

Keep Moving Forward


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People with chronic illness often use the words “keep pushing on” or “keep moving forward.” We use these words because we know that if don’t keep moving, our diseases will win.  I often wonder if when we say these words and practice them whether we actually believe them.   I am not sure that I always do.

The fact is, it is hard to keep moving forward, mentally and physically, when you are so tired. I am tired of being sick and I am tired of trying to juggle my health demands with my personal and professional lives.  I know that people who live with chronic illness get what I am saying but healthy people really do not.

When you are sick, being tired has a different meaning than it does when you are healthy.  When I was healthy, tired meant feeling exhausted because of school, work, or sleepless nights taking care of small children.  But now, being tired means being consumed with fatigue all the time.  I wake up exhausted and it does not matter how many hours I slept.  My body often feels like I am lugging around a really heavy box because I am so overextended. I am regularly tired to the point of tears because I cannot figure how to function with all the pain and fatigue.

I am emotionally and physically tired. I am tired to my core and to my very existence.  And I don’t know what to do. Simply saying “keep pushing on” or “keep moving forward” is a pretty difficult feat. Just thinking about all that life throws and then trying to juggle that with my health demands is awfully draining.

Showing progress is a relief and it makes moving forward easier. But the setbacks, they send me in the opposite direction. They make me even more worn-out and I am discouraged. How do I tell my family, my friends, my job, that I need a break?  There is no way to do that.  There is no time – life goes on even though I am sick. I still have to work, take care of my home and family, and I still have function just like a healthy individual even though I am not healthy.

In my mind, I know what to do: “keep pushing on” or “keep moving forward” – sounds simple to the average person.  I know this is what I am supposed to do and I have done it before.  I know that better days are ahead. Chronic illness is full of ups and downs – good and bad days.  I know all that. I also know that the solution is to keep moving forward and try to not let it all get to me.  Right now, it is quite hard before I am feeling defeated. I really am tired.

Posted in Tough Choices

I Hate Clowns


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I hate clowns and I have hated them since I was a kid. I was also afraid of them when I was a kid.  Unfortunately, my four year old has the same fear. As an adult, clowns still give the creeps.  Living with chronic illness, sometimes I feel like a clown who can’t wash off her makeup.

I say this because sometimes I don’t feel like I am in control.  The flare-ups, the fevers, the pain and other symptoms are often out of my control. They also make feel silly.  I am only 37 years old and sometimes, when I stand up, I am walking like a clown.  My swollen feet feel like I am wearing those big ugly clown shoes. My swollen face and dry eyes – it is like I can’t wash that clown makeup off.  My swollen wrists and hands, I feel like I am wearing an ugly polyester clown outfit that makes my skin crawl.  My knees and hips ache as if I have been sitting too long in a tiny, red and ugly clown car with way too many clowns in it.

I am not a happy clown either.  Aren’t clowns supposed to be happy?  I am a clown with a sad face.  That is because of the depression that sometimes really hits me like a dodge ball.  There am I, the clown that was hit by a dodge ball. Seriously, who the heck wants to be silly, ugly clown that people laugh it?  That is depressing in of itself.

I managed to find beauty and humor in living with RA and fibro.  I have learned to be stronger than most.  Lately, however, with the depression, it is been harder to be strong.  I am sick and I am not going into remission any time soon.  I used to think that once I accepted the fact that remission wouldn’t happen, I would be free from the burden of desperately wanting remission. Even though I know and accept this now, I find myself wondering why life is so unfair.

That is why sometimes I feel like a clown who can’t wash off her makeup. I feel like I am a fake. Before when I thought remission was possible, I felt stronger.  But here I am finishing my fifth year with RA. While I am not as bad as I expected to be, I am not better.  After a while, something like that takes a toll on a person.  The thing is, I still hate clowns and I feel like one right about now.

I want to feel strong like I always have been but life has thrown some nasty curveballs at me in the last few years.  Illness, financial issues, my brother’s illness and death, my mom’s stroke and marriage issues. I am finally coming up for some air but dealing with all this stuff and looking confident is a disguise.

I finally realized that I don’t have be strong and confident all the time. Except that’s another reason that I feel like a clown.  I want to be confident and I want the people that I know to see me that way but lately, it is not possible.  I have accepted that I am chronically ill and that I am depressed but it is hard stuff.

Acceptance is hard thing.  I have spent so much time playing the tough and now, I just feel like a fool – a clown who can’t wash that makeup. And I hate clowns so much. So now, I have got to work on not being a clown.  That should be all but easy.

Posted in Chronic illnesses, Fibromyaloga, Life in general, Motherhood, rheumatoid arthritis, Tough Choices

I Strive for Normal


A few evenings ago, I stood in my kitchen making dinner when a rush of nausea and dizziness hit me.  I leaned on the counter for support.  I had stood too long and my body was rebelling. I left the hot kitchen and headed to my leaving room to sit down while the episode passed.  By the time I had sat down, I was sweating profusely.  I asked my 13 year old to grab an icepack from the freezer. I placed the icepack on my forehead and rested for a bit.

I finished making dinner and the rest of my evening was shot because I was too tired to do anything.  I even left the kitchen a mess until the following morning.  I was even too tired to ask my 13 year old to load the dishwasher.

Being in the kitchen and preparing meals used to be one of my favorite things. These days, my kids are lucky if they get one home cooked meal per week.  Usually, dinner consists of whatever is fast on most nights.  When I am able to prepare a home cooked meal that requires effort, I feel like I bring some normalcy back in our home. Or when I am able to keep up with the housework and laundry, it seems like my kids can have a normal mother.  Normal is what I strive for but it is not easy and it doesn’t always work in the way that I want it to.

Despite my RA and fibro being somewhat controlled, I have learned that normal is the exception to the rule.  When I try to make my life feel normal, I end up paying for it.  I am a busy working mother and I am raising two very active boys and sometimes, I can barely keep up with everything life throws at me.  Something as simple as preparing a meal should not be so hard but when you live with chronic illness, it is big feat.   It is as close to normal as I can get.

When a person is healthy, their life and identity is built around what they are able to do and how their body helps them do it.  When you are sick, you start to doubt yourself.  You want some control of your life and you keep striving to reestablish normalcy. After all, chronic illness changes what normal is and most of us don’t like the type of normal or the lack of normal it brings.

I am still striving for normal even through normal can be hard.  Normal is just the little things like preparing a meal that involves standing for long period without having to rest in the middle of it or after it.  Normal means that I can clean my home without having to rest every half hour.  Normal means that after doing laundry I can actually fold it and put it away.  Normal means that I can spend the day at a park or beach with my kids without the heat or cold getting to me.  Normal means that a long drive isn’t tiring.  Normal means that my kids get to feel what it is like to have a mother who can do so much more than I can do.  Normal means that I feel like I can do the things that others can do including creating a work-life balance despite living with chronic illness.

I strive for normal everyday and some days, it can be pretty hard. Other days, I get pretty close. And once in a while, I have a rare day where normal doesn’t wear me out and it allows me to feel like any other member of the human race. Normal isn’t my reality but I keep striving for days where it can be.