Where Did 2014 Go?

I have not blogged here in quite some time.  Life has kept me busy as possible.  I am having a hard time figuring out where the year has gone. One day it was a January 1, now we are close to Dec. 31. I even just realized we are only a week away from Thanksgiving.

Of late, my life has resembled some sense of normal.  I moved to a bigger place and my sister and her kids moved in with me.  Other than that, life is just moving along.  I have thought about finding a job closer to home because I am starting to get worn out from my long drive.  I have been thinking about finishing one of the books I have written and I have also been pondering the future. I have been in touch with my daughters – one is now married, another engaged to be married and the other talking about college.

My RA haven’t been in the best place lately. The weather has gotten cold quickly here in NE Ohio and I have been in the worst kind of pain. My pain seems to be worse on my left side. It was so bad last week and I had my wrist and hand wrapped because I needed to support to do my job.  We are getting a few warm days coming up but then it is back to cold temps before Thanksgiving.  I am sure most of you in the states are dealing with the same situation and I am sure your pain has been just as bad. Old man winter ticked off early this winter.

The boys are doing well. My oldest, age 14, plays the role of the rude teenage quite well.  Sometimes, I wonder if he thinks that it is a requirement to play that role.  My six year old – a first grader – has been struggling with behavior issues at school and at home. He is a very bright child and does extremely well in school but the behavior is hard to understand.  He struggles with the fact his father is rarely around. I think it has been over five weeks since he has seen or heard from his father.  I don’t know what to do about the issue.  I wish he (the father) would just stay away if he is going to see his son once every 1 to 2 months or longer.

And I am still wondering what happened to 2014? And figuring out what my plan for 2015.  I just know 2014 has forced me to see life quietly and purely and I am really good with that.  Yes, there were and are some tough moments, especially with my health, but no one is immune from hard times.  I hope all of you have a blessed and warm Thanksgiving.  Enjoy the holiday season.

No One Ever Tells You

No one ever points out the perfect life to you and tells you go out there and get it.  No one ever says it will easy be or hard or full of curves.  No one ever tells you that there will be times of joy and times of sadness.  No one ever tells you that adversity can strike at any moment.  No one ever says that life can be tragic and that you loss and heartache can strike at any moment.

People don’t tell much about the bad stuff. They don’t tell you RA could strike when you are a young mother in early 30s.  They don’t tell you that chronic illness can contribute the dissolution of your marriage. They don’t tell you that not everyone stands by their vows. They don’t tell how tough being a single parent is. They don’t tell you that you have to worry about your job every day because you don’t have a backup person.  You don’t even have a backup person for when your kids get sick and you have to leave work or even when you get sick.

I don’t think anyone ever warned me about the bad stuff but you know what? I am glad they didn’t. In the past few years, I have figured out who I am and what I want out of life. I am happy despite chronic illness, despite being a single mother, and despite worrying about anything and everything. I am happy! I have two healthy children, a great job and I am an advocate and freelance writer.  And granted I have my moments, but I am happy most of the time.

I was told I would be disabled by now but I continue to surprise everyone including myself. There are people who are healthy who aren’t capable of the things I am.  Once upon a time, I thought that I had to be this person that everyone expected me to be but chronic illness taught me that life is too short.  I am here for my happiness and my children’s – not anyone else’s.

I stopped caring about the bad stuff.  Sometimes, the bad stuff comes back like the times when my symptoms are out of control and there is no end in sight.  But I keep going on because I know that if I don’t, I will give up and I don’t want to do that. It was a year ago that I realized that my depression was lifting and now a year later, I have never felt more blessed than I do now.

I haven’t blogged here in quite some time.  I have been busy and doing my best to just stay healthy and it hasn’t been easy but it is what it is. I started writing a couple novels and while I got the stories out, I never really got around to the editing and finalizing.  My plate is full but I hope to one day finish and publish those.  And I am still writing my chronic illnesses articles and I am still trying to survive the 9 to 5.

I am doing well and I will continue to do so.  Of course, this blog has taken the least priority and it will have to for the time being.  You guys all know where to find me on Facebook and my advocacy sites.  I hope everyone is doing well this time of the year and I am hopeful I will be here blogging soon enough.

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.