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.

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 http://laborpain.wordpress.com/2013/06/12/what-i-really-mean-to-say-guest-post.

We are all just trying

Most days, I feel like I am barely getting by.  I have two chronic illnesses but yet, I have been fortunate to continue working fulltime and to take care of my children as a single mother.  I have been fortunate in a lot of ways and I am grateful for the grace of God.

I was writing on article about chronic illness guilt recently and I found myself thinking about all the ways in which I have felt guilty about being sick and all the things I have felt like chronic illness has taken from me.  When I actually take the time to see what all I have gone through in my life since getting sick, I don’t think the healthy me could have handled all that.

While it seems like sometimes I am just getting by, it is really more than that.  I am worn out from trying so hard. I don’t know why I feel the need to accomplish so much but I do. It is like I am trying so hard to prove something and I don’t even know what that is.

The way I see it, we are all just trying.  We are all trying to prove we are capable. We are trying to feel less guilty or more useful.  We are just getting by and for whatever reason, we feel the need to overcompensate because we are chronically ill.  Often times, we do it without even thinking because we have been taught that being sick or at least, showing it, isn’t okay.  So, we just keep trying. We are try are best and we try harder than most people and we are getting by.

Am I an adequate enough mother? Or sister? Or daughter? Or friend? Or employee?  Am I? I don’t know. I just know that I keep trying and I will as long as my health lets me. I guess that is all of us can do.

My Poor Neglected Blog

It is not like I have nothing to say.
I always have something that needs saying.
After all, I am me.
I am type A and I have RA.

My poor neglected blog.
I have not forgotten about you.
You sit here waiting patiently,
As you always do.

Lately, my life has been filled with more commitment,
And I took on a new venture for a short time.
But you, my dear blog, have not been forgotten.
You will be here, waiting patiently as always.

Fall turned into winter,
And soon, spring will be here.
And so will you,
Waiting for me to share my thoughts and even pour my heart out.

My poor neglected blog,
Do not fret
As I will be back soon enough,
And the words will flow beautifully once more.

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.

Have a Safe and Happy Holiday Season

happy holidays

As 2013 comes to a close, I want to wish you and your loved ones a safe and blessed holiday season.  I love the holidays and I find nothing that brings greater joy than spending time with those I love.

2013 has been a very busy year for me especially as far as my career has been concerned.  I was promoted into a paralegal position in October and I have also been doing a lot of writing for my advocacy sites.  Moreover, I have been taking a stab at writing a book. I have actual started a couple books.  The first I decided to put aside for the time being.  The second – you can find HERE.  Fiction writing has never been my area of expertise but I am trying to work on those skills. I welcome you feedback.

I am blessed to be surrounded by loved ones and my year has been pretty much that.  I think about our brave men and women in the armed services serving overseas this holiday season and I thank them for their great service to our country.  Their families also offer their services and they make tremendous sacrifices for our country.  So, please show them gratitude for their commitment as they prepare to spend the holidays without their loved ones.

This year has been one of growth and reflection for me.  I closed out a chapter of my life that had long held me down and now, I am moving forward and trying to find happiness again. December 20 marked the third anniversary of my brother’s death and I celebrated it by writing a piece about how his illness and death affected our lives in hopes of educating people about peritoneal mesothelioma”. My brother’s death never gets easier but I am learning everyday that his memory lives on.

As I look forward to a happy and healthy 2014, I wish you and your families a safe and happy holiday season and a prosperous New Year.

Two Words No Family Should Ever Have to Hear

Lana's brother Moe

Entering my brother’s hospital room two days before Thanksgiving 2010, I couldn’t have predicted that this day would be the last day I would hear my brother speak or see him moving about. I knew that when his doctors spoke the words “peritoneal mesothelioma” that the chances of him going into remission were small. Those words were now distressing my family and breaking my mother’s heart. I had heard those words before but in the past, they seemed to be meant for someone else and not my younger brother.

My brother Moe was only 31 years old when he was tragically taken away from us on December 20, 2010. His life ended before he really had an opportunity to truly enjoy it. He had not yet gotten an opportunity to marry a soul mate or have children. His life ended because of someone else’s disregard for life. My mother lives every parent’s worst nightmare because she outlived her child. My siblings and I lost our brother and our friend and his nephews and nieces lost their uncle.

Read more: http://www.mesothelioma.com/blog/authors/warrior/december-advocate-of-the-month-two-words-no-family-should-ever-have-to-hear.htm#ixzz2mXmfm6fJ

Just Not Over Thinking It – Quick Update

over thinkingI have not blogged in a couple weeks because I have not had much to write about. Life is going well, RA is controlled and I have no complaints.  Still adjusting to my new job since there is so much to learn but I am getting slowly but surely.

We are going on three years since we lost my brother and this will actually be the fourth Thanksgiving without him.  Thanksgiving 2010, he had just had the surgery to remove the cancer from the lining of his stomach.  Less than a month later, we lost him.  This is the first year I feel at peace with everything that has happened.  I don’t stop missing my brother but the pain of loving him gets easier.  I haven’t forgotten him and I never will but he would want us to move forward and be happy.

And I am happy.  A lot has changed over the past year for me and I am enjoying life and doing the best I can to just live in the present and not over think things.  Therapist finally discharged me. She told me I don’t need her anymore – apparently I am doing pretty well.  I feel great and I feel like the worst is behind me and the depression, I don’t miss.  I also know that if I should start to feel intense sadness and pain, all I have to do is pick up the phone and make an appointment.  But I have confidence in my abilities and my strengths and I know everything will be alright.

I am notorious for over thinking and over analyzing things. Just ask my family and friends but I have made decision to just live in moment, day by day.  Better for my stress levels and my health.  With the holidays approaching, I just want to enjoy the time with my loved ones and just be me for once. The “me” that I was not able to be for a long time because there was so much happening in my life. Now, I finally get to be that person and I get to do it when my life in right place. I am blessed and I am lucky. And I am just not over thinking it.

I am okay


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.

I am still not saving the world

 saving the world

I have been dealing with a tension headache for a couple days now. These tension headaches have a tendency to make me feel that everyone wants a piece of my time and I don’t have that to offer.  I remember being a young girl with dreams about changing the world and making it a better place.  And for a while there, I still thought that I could.  I thought once I raised my kids I would but rheumatoid arthritis and fibromyalgia have changed my plans.

So, I am still not saving the world and I don’t think ever truly will be.  Most of my advocacy these days is behind a keyboard.  I have learned to be okay with that.  Mostly, it is because I am too preoccupied with being sick. About 75% of the time, I am wondering who hijacked my body and the other 25%, I am trying to get as much as I can done before the next flare up sends me under my covers.

Yesterday, I was so proud of myself. I cleaned up my place, did all the laundry, and took my kids out to a Halloween carnival. But all the bright lights and sound had their effect on me due to having a heightened sensitivity thanks to living with fibromyalgia.  Now, I have a tension headache, neck pain and very little energy.  I cannot hide out in a dark quiet room.  Life just doesn’t work like that way.

Sometimes, I wonder how I feel on any given day affects my kids.  One minute I am on top my game, and the next minute, it feels like have been boxing with Muhammad Ali and he has shown me no mercy despite my handicap. I feel like Muhammad Ali wasn’t kind at all to me yesterday and I am paying for it today.  I wonder how that affects my kids but I am afraid to ask them because I don’t want them to worry.

I know that I won’t be saving the world any time soon but I am doing the best that can considering the hand I have been dealt.  Feeling like this makes me feel defeated but I still know I am capable.  Right now, I just to rest so I can climb back into the ring and show that I am in fact strong, capable and willing.  I probably will never save the world in the way that I feel is amazing or superb but I am doing the best that I can to help others understand that life with chronic illness isn’t easy but life isn’t over either.  That is all I can do for now – it isn’t like I was born with a superhero cape.

An Early Morning Approach


I constantly pride myself for being able to laugh even when I want to cry.  I have had some difficult times and I would like to believe the worst is behind me and maybe it is. I am hopeful that it is but I have just kind of learned to roll with the punches. And this whole laughing when I want to cry thing, not sure if it is something to be proud of.

Between two jobs, two kids, a bitter ex and a very nosey family, some days, I am not quite sure how I make it.  Sometimes, I am not sure how I make through the day without crying.  And how I made it through yesterday without crying.  My day started out with a nasty texts from the ex and a broken windshield. I told myself that crying or being upset wasn’t going to repair the windshield or change my ex.  Both of these, I had no control of.

I still worry about the future, about my chronic illnesses, about my kids and doing this all this my own, but mostly I worry about whether I am doing it right. I remember the toll that it took on me and I don’t want to go back there. Depression is one heck of ugly thing and I would never wish it on my worst enemy.

Despite my early morning approach to venting, I did get the promotion I mentioned in a prior post.  I am excited and nervous at the same time. My new position, while still within the legal department of company, is completely different than what I was doing before. I have confidence in myself that I will do fine but I have tendency to be my biggest critic.  I should remind my biggest critic how capable I am but it is like an inner voice trying to dissuade him from my goals.

I should know better. I write well and I have done well for myself in writing, advocating and my legal job.  I have done well as a mother – a single mother and I am more than capable of being successful but I have spent my whole life trying to find that something that will somehow make my life just right.  I don’t know what that is and as I get older, I am starting to wonder whether it even matters. My late father used to play the lottery every week and he would always say that his ship would come in one day.  When I was a kid with a wild imagination, that ship was a long and luxurious yacht. As I got older, that ship started to look more like a cargo ship and now, it is merely a broken speed boat. I wish that I could be that dreamer that thought her dad’s ship was a yacht but life’s challenges have forced me to see that ship differently. I don’t know whether that is good or bad.

As for my book, I am going through a frustrated author phase. I was so into it and everything felt so right and then, it didn’t.  And I am stuck trying to figure what direction I am going and I just have this sense that I may need to start over.  Essentially, the story line is the same but I just want to introduce it in a way that pulls the reader in and I am stuck trying to figure out how to make a dead womanizer the main character.  So, I am taking a break and plus, I have several articles to work on.

It is getting cooler and I am waking up achy in the mornings. Sometimes, I go to bed in pain. The winter months always leave me wondering if my RA is getting worse.  I don’t think it is but winter leaves me questioning my ability to manage it and balance it against my life. I think the part that scares me the most is that the returning symptoms make me wonder if disability is around the corner. So many of us are too young to be thinking about disability but we do. Sad, but true.

 I don’t remember a life before RA and sometimes, I wonder if my kids do – well, my five year old probably not but my 13 year old, perhaps is in the same ballpark as me – trying to remember a time where our lives were normal. I wrote about this in an article title Parenting with Chronic Illness: One Mother’s Lessons Learned.  You will have to check it out.  I have gotten back a lot of positive feedback on it.

Anyway, it is time to start my day and considering I did not fall asleep until 11 pm last night, that is a great feat.  Unfortunately, my tiring day was on my mind as was my formerly broken windshield. I took care of the windshield right away but I felt defeated and not because of the cost either (that bothered me too) but mostly because it was not a good way to start the day. So, guess what – today will be better. And if it isn’t, well I will do what I always do – laugh when I want to cry.  :-)

A Story of Courage and How Mesothelioma Touched My Life

Heather’s Story

I recently received an email from Cameron Von St. James who one day found himself caregiver to his wife, Heather, who was diagnosed with a very rare and deadly form of cancer called mesothelioma. These two people are truly amazing souls and the odds that they beat were remarkable and I am not just referring to the cancer. How they got through this together is an amazing feat as well.

I wish I could share more about Heather and James but I can barely get through their site without finding myself in tears.  What I can tell you, however, is that Heather is a survivor and she beats the odds. Her story is positive because she was and continues to be hopeful.  She wanted to beat the odds and beat cancer and she did.  Heather has now made it her mission it personal mission to raise awareness about this awful disease and to bring hope to those experiencing similar hard times.

I was asked to share Heather’s story and I am more than happy to.  You can find out about Heather at www.mesothelioma.com/heather but be prepared with tissues.

How Mesothelioma Touched My Life

As many of you know, mesothelioma has touched my life and it is a part of my life that is hard to talk to about.  It was about this time three years ago that my brother was admitted to the hospital. He did not leave the hospital after that because he was told that he had six months to live.  There was surgery at the end of November that was supposed to give us more time with him but he was too far gone to have survived following the surgery.  He lived less than a month after that.  It was on December 20, 2010 that his battle with peritoneal mesothelioma ended.

I wanted to become an activist and fight against asbestos use but it was never that easy for me.  For everything I have been through in my life, my brother’s cancer was the hardest and it continues to be.  It is one of those things that I continue to push aside so I don’t have to think about how he suffered and how we quickly lost him. Grief over the loss of a loved one doesn’t go away overnight or over weeks or even over years.  That grief often lasts a lifetime.

But I am so happy when I hear about a story of survival from mesothelioma. I am happy for the survivor and I am happy for their loved ones. Do I wish that my brother was survivor and that he was still here? Sure I do but I know that God only takes the good ones young.  And my brother’s memory lives in his mother, his siblings and his nieces and nephews. And I am going to leave it at this because my glasses are getting wet and foggy from my tears. Rest in Peace my dear brother. If you only knew how missed you were.