I Miss My Old Normal             


Up until recently, my RA and fibromyalgia had been well controlled.  I had been able to manage and live my life despite minor flare-ups.  However, the past few months have been difficult.  Years of taking anti-inflammatory medications has resulted in my having high blood pressure.  Not only that, my vitamin D levels are always very low results resulting in extreme fatigue.  And my conditions are not as well-managed as they used to be.

I used to miss being healthy and being the person I was before I got sick six years ago.  Now, I wish I was feeling as well as I did in the beginning of this year when my flares were minor and didn’t affect my day to day.

I figure I had a good run there and I made the best of it. That doesn’t mean that I don’t keep fighting.  I will always fight to make every day count. However, I am willing to accept that this is my new normal but I sure miss my old normal.

My life hasn’t changed that much.  I am still working hard, advocating, writing my chronic illness articles and hoping to one day to finish one of those books I started writing.  One of the things about being sick for years is that you know life goes on whether you are up for it or not.  You just keep going because that’s all you can do – and the other option is giving up.

I accept that my conditions won’t be well managed forever and that there will be setbacks.  I just know that I am living for today and not focusing so much on where my health will be in five years.  I didn’t do that when I was first diagnosed. Truth be told, however, I worried the first year but once I found a “normal,” I moved forward and didn’t give up on my dreams.  That is what I will continue doing despite the fact that I really miss my old normal.

I haven’t disappeared on you guys. I am still here, trudging alone and trying to enjoy every day. Last year at this time, my health was in a better place and I hope that it will be once again. In the meantime, I will just keep fighting to make the best of this life despite feeling sick and being in pain.

I figure my kids watch me and I want to make sure I continually set a good example for them.  I want them to see me as someone who can still love them and care for them despite being sick. And that is all I ask for when it comes to living successfully with my illnesses – that I can be the mother they need and deserve.  I don’t think that is too much to believe in.

It’s a Beautiful Day


The sun is shining and the birds are chirping. Spring is officially here in Northeast Ohio. It took its time but we made it through a brutal winter. This morning, I awoke to realize that my life had a greater purpose and it was more important than ever to be there for the people I love. I am also proud of my family because we have all come together to rally around my brother. We have done it in a way that shows we are a united front and that we can stand together no matter what hurdles that life throws at us.

My RA is back to being well-controlled and after that hospital stay; my BP is staying at safe levels. I am feeling a bit drained at work, my home life and helping family after some recent events that required some major intervention. In recent weeks, our (my family) lives have been touched by events far beyond our control but rather than those things tearing us apart, we have all gotten closer and stronger than ever.

I don’t consider myself religious but I do believe in God. I also believe that God only gives us what He knows we can handle. My brother was dealt a hard blow but when his resolve was down, he came to his family to help him get back up. Moreover, I choose to be his anchor and as a result, he was able to rise above some tough challenges. And while we still have some challenges ahead of us, I believe wholeheartedly that we will continue to prevail.

I wish I could explain the circumstances but that is not a post for today. All I can say is that God listens to people who are pure in heart and in spirit and my brother is one of those people. While he is envious of my strength, I am envious of his kindness, pureness and spirit.

This is the second major event (after my late brother’s death) that has changed my family for the better. We are blessed in more ways that we could have ever imagined. And for that reason, I awoke this morning feeling stronger and more fortunate than ever. I know can prevail. I know my kids can prevail and I know my family can. What more could I ask for?

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


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.

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.