It has been a long week for me. My kids have been sick which means I am working a third job – nursing them back to health.  That was hard when I had to nurse myself back to health as well.  I had a third epidural steroid injection for my neck.  The pain management doctor also told me that it would be the last time for some time and to meet with a neurosurgeon.  It is not an idea I am thrilled with and I wish that this was not my last and only option remaining.

Part of being a working mom means making the decision when to let them stay home sick, when not to, and when you have to pass the duty to someone else.  I have been passing the duty to someone else and I hate myself for doing.  Passing it off means that I don’t stay home with them when they are sick and someone else does. I wish I could but between my own chaos of RA, fibro, neck and back pain, doctor’s appointments, work, etc., I wish there were two of me.

My twelve year old went to school this morning despite the fact that he has been wheezing from an upper respiratory infection.  I didn’t force him to go. I told him to stay home but he had a science test and I figured he is better off at school then home alone.  He has a follow up appointment with the doctor tomorrow but I am still worried because I am away from him.  My three year old spent Monday with his Dad and Tuesday with his grandmother because he was sick and I felt guilty for that. My mom also had to attend a funeral on Tuesday so he ended up with his cousins in the afternoon and I felt guilty for that too. The epidural steroid injection appointment was Wednesday and I could not call off work on either day. I felt guilty again – do you see a pattern? On Wednesday, I sent my three old to day care even though he needed one more day in bed because I could not cancel the injection.  I ended up picking him up early though and taking care of him through my own pain. I took the morning off from work yesterday to recuperate from the injection and the earlier part of the week.

You know that I am happy to see Friday. From five o’clock on, I can focus on my kids and getting myself to feeling better as well.  Being pain, a lack of sleep, muscle relaxers and pain medications, I can hardly function.  I need to rest and I am ready to do that.

This is what my life is like. It is demanding and while I would love to complain, I don’t really have time. After all, this is motherhood in the 21^st century.  Mothers work and they still have to be mothers.  Chronic illness is also a fact of the 21^st century and it accompanies parenting and full time employment. In some alternative universe out there, there has to be a better way.  But since I watch too much sci-fi, I am sure there isn’t.  The idea of a utopian society appeals to me.  One that involves happiness and good health.  Heck, maybe I could write a proposal to the president or something.  Of course, he will think I am asking him to critique a novel which he has no time for and the whole think will be a waste of time. Any suggestions?

Have a great weekend everyone!

Cover of Feelings

Those of us who live with conditions that cause us to be in chronic pain not only suffer from physical symptoms but also from emotional ones. I am bringing this up today because I know that I am not the only one who has these feelings.  It is not something I am proud of but it is something I think many of us ignore as do our doctors and even our families.  Living with chronic pain leaves a person emotionally numb. It is nearly impossible not to feel like this on occasion.

It has taken me a long time to come to this realization and going on four years living with constant pain, I know these feelings are a part of living with the pain from RA and fibro. When someone asks you how you are feeling, do ever find yourself not sure how to answer that question? I think that we focus so much on the pain that we don’t acknowledge our emotions so we shut down.

It can be hard to express fear, anger or sadness if the pain in your body screams louder than the pain in your heart. I, too, am guilty of suppressing my feelings in order to protect myself.  I find that my truest emotions are too overwhelming and I have to control them. The problem with doing that is that they all come out at once. I am not completely numb nor am I numb all the time.  I generally find myself experiencing this numbness during and after a painful flare period. Many of us are aware that this is part of the diseases and the pain we live with.  It is also a result of the medications we take. However, the constant suppression of emotions is unhealthy and has an effect on a person’s total well-being. 

If you are still not sure what I am talking about.  Think about a time in your life when you had to keep it together. Especially if there was someone else involved, i.e. your kids or elderly parents.  When my brother was first diagnosed with cancer, I held things together for my mother.  I made all the decisions for her and I did everything in my power to be strong so as to give her hope and to allow her to feel at ease.  I became emotionally numb and I described it to being a small ship in a storm hanging on despite the damage to it.  After my brother passed away, all my emotions came out at once.  I was angry and sad at the same time.  I took out my anger and pain on anyone who got in my way.  I even questioned my faith in God.  That is what emotional numbness is and it isn’t any good for us.

I have met people that feel anger, sadness and jealousy are emotions that should be bottled up in order to live better – whether it is spiritually or because of certain expectations. Suppressing feelings means that you cannot be true to oneself.  Your underlying feelings become a personal sabotage. This is what you start to see: I am doing everything all right but why is nothing going my way. People who hold on to these feelings do this for a number of reasons.  Perhaps it is a coping mechanism – after all, living with chronic pain requires some resistance and sacrifice.  It could also be because they were raised in an environment where feelings and intense emotions were unacceptable. The problem with ignoring our feelings is that they eventually pull us down. Unfortunately, so many of us have had negative experiences that force us to keep our emotions to ourselves.  In the case of chronic illness, we have gotten to the point we feel no one understands us or even believes us.  We suppress our feelings to the point where we become afraid of them and we try to conduct ourselves despite those feelings.  We know all too well that there is nothing healthy or spiritual in doing so but we do it anyway in the name of coping and acceptance by others.

I say this because I am very guilty of this and it has led me to feel emotionally numb.  I am in physical pain nearly every day of my life.  I don’t want to complain because I don’t want people to see me as incapable or as a constant complainer.  Also, my life doesn’t leave room for complaining and even expressing my feelings.  Life goes on and how I feel has nothing to do with it.  Bills have to paid, work at the office has to get done, my kids can’t raise themselves, etc. Bingo! – I shut down in order to cope with pain and with life.

Up until recently, my numbness was my way of coping.  It has taken me a long time to acknowledge my feelings and to be open about them.  Chronic illness and pain isn’t the only reason I had a wall around me.  My parents were wonderful parents but they taught me that opening up about life’s challenges wasn’t appropriate.  They came from a cultural background that believed in a showing a tough exterior and not allowing anyone to see behind closed doors.  While I love them for always trying to protect from the perception of the outside world, I often wish that they spent less time worrying about what people thought.  When I was a kid, they protected me but as an adult, I was on my own.  While married to my first husband, I never told anyone what I was going through not even my mother.  I got used to hearing “what will people think?” that I learned to suppress my emotions and feelings.  My marriage ended and everyone single person in my life thought I was wrong for walking away because it seemed like I had this perfect life.  But here I was struggling to pick up the pieces after a nightmare of a marriage.  Until I owned up about those feelings and talked what I actually went through, I didn’t believe it myself.

After my diagnoses of RA and fibro, I found myself struggling with my emotions.   I felt this sense of anger and injustice. It wasn’t fair – hadn’t I been through enough already? Was I a bad person since bad things kept happening to me? I felt so helpless and felt like I somehow deserved this cruel fate. In the beginning, I struggled to get others in my life to understand what I was going through and that further added to what I was going through. As a result, I suppressed my feelings in order to survive. Needless to say, that first year after my diagnoses was a pretty tough year.

These days, I know that in order to cope, I have to discuss and acknowledge my feelings.  When I felt myself dealing with emotional numbness, I stop to confront what I am feeling and emotionally process these emotions.  I tell myself it is okay to feel sad or angry at what whatever it is I am experiencing.  These emotions are normal and should be expressed, not suppressed. Self-talk is an important part of this.  In the past, I would tell myself to get over it and move on but these days, I allow myself the occasional pity party. I have also learned that it is okay to talk to someone else. Sometimes, just simply speaking to someone, anyone, including a professional, makes all the difference in the world.

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Yesterday, I had my weekly appointment with the chiropractor, and I didn’t get much relief.  In fact, I lay in bed last night praying for the pain to just go away.  So much for prayer!  I awoke to more pain than I was in the night before.  I even took a muscle relaxer before bed and it doesn’t appear to have helped much.  At the chiropractor yesterday, I realized that my entire back was sore.  When I got home, I noticed that my upper arms and thighs were sore as well.  In addition to my herniated discs in the neck and back acting up, I am also dealing with a fibromyalgia flare up. Yesterday, I was also dropping things and the knuckles in my hands were in inflamed.  My left knee and ankles were inflamed as well.  Therefore, I had two flare ups going on.  Talk about double whammy.

As I drove into work today, I thought about how long it’s been since I dealt with a double flare up and the truth is, it has been quite some time.  Winter can be pretty harsh on my joints and my muscles but the pain I am experiencing feels like it is unfamiliar territory.  Perhaps, it has been quite some time since I have had a double flare but let me tell you, it is not pleasant company.  Further, it has taken me back to winters before I was diagnosed.  The pain, especially the muscle pain, is all too familiar. 

I ponder as to whether I am a lot better off now that I have a diagnosis (albeit a double whammy) than I was when I just didn’t know.  It occurs to me, however, that this was what the pain was like all those years ago.  I have spent the last three years taking medication and making good lifestyle and diet choices in order for the pain to be at a minimum. The pain I have had for the past few days is a result of overexertion.  On Sunday, I decided that I was tired of boxes all over the place and finished all my unpacking.  From 9 am to 5 pm, that is what I did.  I took breaks but nevertheless, I overdid it and this flare up is the end result. 

When I go through periods where the pain is at a minimum, I often forget what a bad flare up is like.  I overdo things because I feel able and capable when my pain is at a minimum.  However, like many of you, I pay for it.  Also, when my pain levels are low, I never know which is causing my pain – fibro or RA.  But when my pain is high, I can determine which is causing the pain and today, the muscle pain is from the fibro and the joint pain from the RA.  I can feel both and it is not very pleasant. The two conditions are symptoms are similar: muscle pain, morning stiffness, loss of mobility and range of motion. Since this, on my worst days, I can tell the difference. 

Since the two diseases having some similar symptoms, they are quite different.  Fibromyalgia is not associated with inflammation and RA is. I read somewhere that while it is possible to suffer from both RA and Fibro, it is pretty rare.  Wow, how about that! Leave it to me to define “rare.”

That’s my double whammy and anyway I look at it, it still sucks. I guess when my pain is relatively low and my fibromyalgia is, for the most part, quiet, I will forget how much it sucks.  In fact, I will forget enough to overdo things yet again.  In the meantime, please send happy thoughts my way.

And all you people who love Valentine’s Day, this is my Ba Humbug moment.  I never understand the purpose of V-day.  Seriously, we need one day to tell people we love that we love them – and why can’t we do that without a special day? I always love the cute handmade gifts from my kids – don’t get me wrong but I have a problem with the fact that people, in other words adults, need a special day to show love and appreciation.  That is my thought on it.  It may just be the flare up and the cold and snow blasts we have been getting here.  And if you sun by you, instead of gloating (and you know who you are), PLEASE send it my way. 

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I used to have dreams about being healthy but I don’t any more. The longer I live with the reality of rheumatoid arthritis and fibromyalgia, the more I know that my pain, to some level, will always be there.  I no longer feel disappointed that I didn’t go into remission or that I am not pain free. It took me a long time to get here and while I am a believer in strong effort, faith and even possibility, I know that I am in a lot better place than I was four years ago. I know that things could have gotten worse. They didn’t and if anything, they got better.

People in my life – coworkers, friends, family – still have this notion that if I am moving, I am not in pain. As a matter of fact, a coworker commented yesterday about whether I was having a pain free day simply because I was moving with ease.  The truth is I am not having a pain free day. I am actually having a not-so swell day with pain.  I learned a while back that a not-so swell day is a good day. After all, I am still a productive member of society.

Most mornings are usually the same for me.  Upon wakening (after hitting the snooze button way too many times), my feet and ankles are stiff and I gracefully (as if it is possible) limp to the bathroom.  How I would love to stay in bed an extra half hour or hour but I know that is not even a possibility.  I still have full time job that I need and two children that need morning routine assistance.  My older one is twelve, and his morning routine assistance usually involves my reminding him (over and over) that it is time to get up and then putting his shoes and coat in his view as he graciously takes his time while I am always in a rush. I grateful that – for the most part – he is independent.  On the other hand, my three year old needs me to get his clothes out and my assistance getting ready.  He can dress himself but that would involve a lot of silliness and putting off on his part so really, it is my job to get him ready in the morning.  Despite all the morning chaos at my home, I wouldn’t have it any other way. These are reminders that I am alive and capable, albeit not pain free (long sigh).

Everyday reality looks me in the face and often times, reality is imperfect as am I. However, I know that I have to have strength and courage to face life and reality.  I often mind myself that my children need to see that success is possible despite obstacles. They look to me for answers and they want to see safety and protection in my eyes. For me, the relationship I have with pain cannot only be seen through my eyes but it is also written all over my face. I know that my kids see my battle with chronic pain but they also see my courage and my strength. I used to think that I was much stronger before RA and Fibro but I know now that I am stronger than I have ever been because of RA and Fibro.

I remind myself that life still goes on despite my battle and tainted relationship with chronic pain. The reason I used the word “tainted” is because I cannot imagine any of us having a good relationship with chronic pain. Our relationships with chronic pain are contaminated, poisoned and every other fouled relationship you can think of.  There is no good or harmonious relationship with chronic pain.  The only positive spin to this kind of relationship is “tolerable.”  We are tolerably putting up with the pain and that is all the positive we have. We are also working to stay functional and are willing and eager to take care on all the challenges that life with chronic pain has to offer.

Each day living with chronic pain is different but for the most part, the days are pretty much the same.  Some days are better and some days are worse.  Often times, the evening prior can predict the following morning. As each day progress, I feel thankful and blessed for all I have accomplished with chronic pain and despite it.  I learned following the first year living with RA and Fibro that making a choice to try to outrun my pain would be my downfall. I learned that through trial and error.

There is always some price to pay for overdoing things and for not managing your conditions.  It doesn’t mean, however, that we shouldn’t continue to look for rainbows and sunshine.   Modern life is for the most part, “business as usual.” You know how businesses always open – rain, snow or shine.  Life goes on despite how we feel – both physically and emotionally.  That is why we have a choice. We always have an option of one of three things.  One, we could try to out run our diseases by not accepting them but there is a big downfall to that.  Two, we could take the attitude that our lives are over and there is no use is continuing to live full lives.  Or, we could take the third approach which is my favorite, we accept that we have limitations but we don’t let the diseases we have and chronic pain we live with dominate our lives.  Because the biggest fact of life is that life goes on.  We just have to decide whether we want to be a part of that life.

My relationship with chronic pain is what I call my work in progress.  I went through the trying to outrun my disease option and I also went through the “there is no use” option as well. In the end, I found that acceptance of my limitations and pain didn’t mean that I couldn’t have an active life.  In fact, four years later nothing in my life has changed but my attitude.  My relationship with chronic pain as evolved over time.  I know that chronic pain is a part of my life and so does everyone else.  However, I refuse to let anyone compare me to the stereotype of chronic pain.

Looking at my life and all I have accomplished before and after chronic pain came into my life, I don’t have any regrets.  I feel so blessed to have another day to share with my children, my family and my friends.   I see everything that I am and have always been: strong, ambitious, content and aware of my obligations.  What I know is that balance is the most significant key to living a life with chronic pain. The second most valuable key is the first “person” I speak to every morning.  My morning chats with God are reminder that I am blessed despite RA and fibro being a part of my life. I pray for strength and I pray that my health continues to improve.  I also pray that RA related complications stay away because my kids need me right now and I cannot imagine how chaotic their lives would be if I got really sick or worse.  My relationship with God has only gotten stronger the longer I live with chronic pain.

My relationship with chronic pain has taken a positive note in the past year.  This happened because I made a choice to embrace my pain (without giving in to it) rather than trying to work against it.  Every morning is a reminder that I live with chronic pain but it is also a reminder that I am alive and functioning. For that and for my faith in God, I am grateful.

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What we want

One of the first things that we learned shortly after we were diagnosed is that there is one thing that we want that we may never have. We want understanding; we want others to know how hard it is for us to live with chronic illness both physically and emotionally. If we want to get understanding, we have to learn to convey our thoughts and feelings and getting frustrated isn’t uncommon, but it is not helpful either.

Many of us also find that our family and friends don’t believe we are sick or as sick as we say we are. What I have learned here is that this depends on the relationship we have with the person that we want to believe us. I have learned to kind of let this one go because it takes a lot more than conveyance for others who believe what we are going through. All you can do is express to them how you feel and how much you need to them to believe you and if they love you and care for you, they will come around. Being angry and resentful isn’t healthy for you or for your relationships. If the relationships you are trying to reach aren’t close ones, then you will know when you need to move on from those persons. You can also find comfort and support and create new friendships with others who struggle with the similar issues.

What we get

Not being able to convey your message, not feeling well and knowing that your life is getting more challenging by the day can lead you to feel sad, anxious and depressed. I would love to write this post from a third person but I know that I am equally saddened and burdened by my chronic illnesses. I go through my own bouts of depression where I feel sad, hopeless, and helpless more often than I would like. Being told that you are sick and that your disease will never be cured really stinks if you ask me. Your body is doing its own thing and you have lost control of the one thing in your life that you thought you could control. In fact, that thought alone is depressing but the reality is enough to plunge you into clinical depression if you let it.

When you go through a period of sadness because of a major loss – for example, a death, divorce or your new diagnosis – that is a loss and you grieve but you eventually get through it. You allow yourself time to mourn, to be angry and sad but eventually, you learn to accept your new reality. One day, you awake to realize that it is time to get past what you have been through and live your life again. If you don’t, then your grief will become depression and your physical health will become much worse.

Any one of us is capable of becoming depressed, myself included. I am, however, relieved when I find the strength to move past those moments. Chronic illness brings with it changes in mood because of the situation itself. In addition, to the diagnosis you have been given, you start to see changes in your appearance, your mobility and your independence and you start to feel like you are losing the game. Other factors that contribute to your changed mood include pain and fatigue, side effects of your mediations and treatments, and social pressure to put on this game face despite the difficulty to do so.

Yes, Me Included

I find myself at moments near tears without realizing it. I start dwelling and wanting to give up. Just like the next person, I don’t know how much more life can throw at me. I look at my children and I wonder if they realize how much I hurt or if they are angry with me for not always been able to spend time with them. I wonder how much longer I will be able to work and provide for my family. I look at my marriage and see how much it has suffered because of my illness. I look at my husband and I am reminded of how much he relies on me to keep our family strong. I know that he feels like I am the only one that can do that. My sisters went from having someone to lean on to me needing to lean on them. My mother needs me and I have to save my energy. I know family understands, but the idea that I am weak brings me to my knees. I feel weak and helpless to the point that I feel sick. I understand that these moments are acceptable and normal because I live with chronic illness and pain. I allow myself to have those moments and then I remind myself that it is back to business as usual. When I feel strong and positive, I remind myself of the all ways I can keep myself from becoming depressed again.

I have learned to be confident in my medical providers and that means being able to be open and honest. It is second after to being honest with myself and with my husband. Second, I have learned where my circle of support is. I ask and accept help and when I am able to give it back, I do. Third, I look at my health as I would my children’s health (well, at least I try). Moreover, I look at my self-esteem and I know what it takes to keep it up and I have set standards for myself when it comes to being tough. There are times where I have to remind myself that is time to simply “suck it up” and move forward. Last, and most importantly, I continue to have dreams and to continue to work towards them. To me, continuing to be a productive member of society and being able to be successful is important and it is everything that I am and that I am capable of. It is second to being a mother and the fact is, my kids will grow up and won’t always need me, but I will always need myself.

I have never been the type to go around publicizing my feelings, my strengths and weaknesses. I was raised by religious parents who taught me the strength of modesty, but I have learned, on my own, that modesty shouldn’t make us weak. For a long time, I choose to stay quiet about how I felt and what my conditions were doing to me, but at some point, I realized I had to speak up for myself in order to live a somewhat normal life. I had to find answers and I did. After that, I realized I wasn’t alone, others had questions and someone had to speak up and maybe, that someone could be me. However, there are times, where I am ashamed of my feelings about my health, but what I am proud of is the ability to convey my thoughts and my perceptions in a way to allows others to say, “Wait a minute, that is how I feel and now, I know how to describe it” or “Wait a minute, I am not alone.” If what I have to say helps one person, then I feel useful, helpful, and hopeful. That is just another thing that I can’t let the disease take from me.

Most of my Saturday involved unpacking and organizing after our move to a new place on Wednesday.  On Sunday, I spent most of the day sleeping off a flare up. I really had no other choice but to wait it out.  I couldn’t have fought it because I was extremely tired and in extreme pain.  Between my muscles and joints, I wasn’t sure which hurt more.  So, I slept off the flare up and I woke up this morning with most of it on its way out the door. However, something happened last night that I didn’t expect.

About 8 in the evening, I checked my bank account online.  There were two transactions on my account that I did not authorize – both for online vendors.  Someone used my debit card as a credit card and the amounts were not small.  This, in addition to the missing funds, left me with an overdraft.   Here is the thing – no one had to access to my card unless I gave them access to it.  You know when you use your debit card as a credit card and you give them the number, the type it is (VISA or MasterCard), the expiration date, and the security code?  That is the only possible explanation.  I called the bank and they told me to contact the claims department first thing in the morning. Well, that is what I did first thing in the morning. 

My bank opened a claim but told me to wait until the charges clear – right now they are pending.  That means I have to wait until tomorrow morning for the bank to actually initiate putting the money back into my account.  Meanwhile I am sitting here try to make sense of what happened.  I did cancel my debit card but I couldn’t order a new one because my address changed and I didn’t notify the bank yet.  I was told to go to a branch, change the address, and order new one. A good friend of mine only believes in using cash and for this precise reason.  She feels that anytime you recite your card information to anyone you put yourself at risk.  It is a lesson I have learned the hard way. It is something I will be wise about in the future. Here is another thing I have to wait out – getting my money back. If anything, I am not at all surprised that there are crooks out there.

In the past, I was horrible at waiting but RA and FMS told me I had no choice.  A lot of things have changed since RA and FMS came into my life.  Right now, in addition to all this recent chaos, I am working on handling a financial situation that has long lingered. It started with a bad business venture and my health taking a bad turn.  Both of these things put us in a situation that there was no way out of. Well, I am working on that way out right now and it is very nerve wrecking.  I am at the point now where I just have to wait things out and I hate every minute of it.

Life’s events have taught me the value of patience. One of most important things I have learned is to not act on impulse.  In addition, we must change our thinking and our attitudes.  We should reach for support and encouragement in order to continue to practice patience.  I have learned over the years how important patience is because without it, we would make choices that we shouldn’t. I have learned so much in the past few years about myself but patience is the one I have been the hardest hit with. Patience would have kept me from a lot of heartache, anxiety and stress but now that I have learned it, I know that I will be okay. Go figure – It only took 36 years for me to figure this out!

The Move

Moving is never a fun task but I am happy to say I survived it. Of course, the boxes are not unpacked yet and may take a week or two to be all unpacked and organized.  My plans changed on Monday when the management company for my new place called and told me that I could not move in on Jan. 31 because they were replacing the carpet.  I had to shuffle some things around and rescheduled the movers. I did end of picking up the keys on Tuesday afternoon after the carpet was replaced. Moving day became February 1 and I have to admit, it went pretty well. Everything was ready by the time the movers arrived and I didn’t lift a thing.  Three hours later, the move was complete. The cable guy showed up later and set up the cable, phone and internet. Dinner involved pizza and paper plates. After dinner, I went back to old place and vacuumed.  I had been cleaning cabinets, drawers and windows for several days.  The fridge and stove were cleaned the night before and the bathroom before the movers got there. I was absolutely worn out.  I was in bed by 8:30.

We are home

Things went pretty well despite the pain in all my joints. I slept like baby last night. There will be more boxes to unpack today, tomorrow, and for several days.  I also did laundry last night because I have a washer and dryer at my place. I never had this at my previous place so you can see how happy that makes me.  Did I mention that I also went to the chiropractor after the move? The chiropractic massage helped me with some of the neck and back that I have been dealing with as I have been planning the move, cleaning, packing boxes and move its self.  Planning helped because things could have been much worse. However, I don’t have a plan for the unpacking part – I will guess figure it out as I go. Anyway, here’s the thing, I feel like I am home. I slept so peacefully last night and so did the boys that there was no question that we were home. We really are.

Other stuff

In addition to the move, I am dealing with another situation – one I have not been open about on this blog.  It is not something I plan on opening up about but it has been a nerve wrecking situation.  To add injury to insult, the person I hired to take care of it is the most insensitive person I have ever met.  I just want the issue resolved and I hired someone for that purpose.  I didn’t hire someone to belittle my choices. Unfortunately, the monies have been paid and the documents filed so I can have to put up with this person for another couple months.  Trust me when I say I have no plans to recommend her to anyone. 

On Sunday night, I had a dream about my dad. I only dream about Dad when I am struggling with something. In my dream, Dad was waiting outside for me.  He had an RV and we were going on a trip. I was getting my youngest ready and peeking out the window every often.  Dad was leaning against the RV and patiently waiting.  When I finished getting myself and my son ready, I went downstairs and called my brother (the married one) that we were all ready to go (I assume he was going too).  I awoke as we walked out the door.  I think my life would be boring if everything was perfect and wonderful all the time.  Personally, I think God knows I am capable so he tests me. It is hard sometimes being a rock when you feel like a small ship in a storm. I know I will get through this but it doesn’t mean I won’t spend the next two months worrying.

Alliance Health prepared an article where I was mentioned.  Click HERE to be directed to that article.  Also, if you have not checked my Parenting with Chronic Pain article, click HERE for that link.  When I wrote the article for Creaky Joints, I wasn’t prepared for the feedback from.  So many parents out there can actually relate to my feelings and my anxieties. I am glad that I wrote it and I am very grateful for the feedback.

A New Chapter

The move and the beginning of the end of that the stressful situation I mentioned are both part of a new chapter for me. Since my brother died, it seems like things just keep going wrong.  My marriage issues, my car accident, financial issues that continued to linger (but are finally and hopefully coming to an end), having to move because some annoying person decided to single my kids out and several other things I didn’t expect especially when I was trying to grieve my brother.  I don’t feel like I ever really had an opportunity to grieve my brother and the fact that I didn’t is hard.  I know that life gets in the way but sometimes, I think that I spent so much time being tough and trying to hold everything together that I made the choice not to grieve. Supposedly, time heals all wounds or so I have heard.  

Chronic illnesses such as rheumatoid arthritis and fibromyalgia really have devastating effect on your self-esteem and overall well-being.  Regardless of the levels of pain you’re in (big or small), the mental and emotional aspects of chronic illness are much more difficult.  Chronic illness takes a lot away from you and it forces you to doubt yourself, makes you helpless and powerless and it brings with it fears and anxieties.

I do remember feeling sorry for myself and looking back, I am not sure I recognize that person.  When my diagnosis came after a major flare-up (that lasted over six months), I was in no position to feel confident.  I was in so much pain and that I didn’t think I could handle life.  My ability to be confident was compromised and self-doubt became my best friend.  Before I was diagnosed, I thought that finally getting a diagnosis would bring a conclusion to what was happening in me but I found that once I had a diagnosis, there were more questions than there were answers.  I wanted peace and what I got was chaos. 

That is not a part of my life I like to talk about but I share it because it is part of my road to acceptance.  Newly diagnosed patients (and even those with some experience) need justification that their feelings are normal and they want to know that something – anything – will get better.  Even someone like me who appears to have it all together when it comes to living with chronic illness doesn’t have it all together.  Just like everyone else, I dealt with bouts of sadness and depression.  I hate what RA and Fibro took from me. I hate that when I take the stairs I sometimes feel out of breath because I don’t  take the steps often due to pain and also because I am not as active as I used to be.  I hate all the odd symptoms that appear out of the blue and make me wonder what’s going on.  I hate that I forget to mention them at a doctor visit and end up putting them off until next time. I don’t want anyone to see me as a chronic complainer.  Like the next person, I do have moments of self-doubt. So, yes, I do feel sorry for myself sometimes.

When a person is first diagnosed, they struggle with the idea of acceptance.  They see acceptance as somehow giving in to the disease or giving up.  They also wonder if they should just give up.  I remember telling myself that there is no use in fighting.   Or the idea that no one believes you so you should give in and let them see how sick you are.  I even remember wishing that I could just die than feel the way I did.  No one ever told me I would get better – especially not my doctors.  In fact, my first rheumatologist told me that things would basically get worse for me and I should push aside any long term plans. That would be the rheumatologist I fired.

I learned a long time ago that self-pity was ugly on me. It may be attractive on other people but for me, it makes me look pretty ugly.  I think that when we are dealing with self-pity we don’t see how unattractive it is on us. We are too busy self-loathing to even notice but others notice. When someone is showing self-pity, what things do you notice about them?  How about complaining, crabbiness and demand for attention and help? Sounds about right.  In addition to having an ugly side, self-pity leads to loneliness and sadness.

As I was dealing with two new diagnoses and pain and symptoms that were also new, my family did not enjoy my self-pity stage. In fact, what I thought was lack of support turned out to be a wakeup call. Now granted, not every member of my family was expressively and openly disapproving of my self-pity stage.  My younger sister came to visit after my son was born and after that major flare up and took care of me and everything else I couldn’t take care of.  She never once told me to get over what I was going through but before she left to go home after my symptoms started to dissipate, she told me that she didn’t recognize me.  I continued to think about those words in the days that followed. 

The fact is I didn’t recognize myself.  I had been through far worse than being chronically ill so what was different? The difference is that I not only felt mentally weak but also physically.  I thought back to a time where I felt both and when I felt like I didn’t have anything left in me to keep going.  I thought about my kids and if I was too busy feeling sorry for myself, who was feeling sorry for them?  This was kind of like my epiphany or eureka moment.  Additionally, my family did support me – they just didn’t support the person I had become.  They knew that what I had become was self-destructive and they refused to support that.  You want to talk about wake-up call! I had alienated my family at my own doing – I had a lot of bridges to rebuild and I did with time.  Additionally, I finally thought about what role chronic illness played in my life.  After all, I was chronically ill, not terminally ill.  I wasn’t handed a death sentence; I was handed a second chance.

I know that feeling completely disillusioned after a chronic illness is part of the emotional process to acceptance and it is something that comes and goes throughout our journeys. However, when we stop just trying to cope to fully understand our illness (as I did), we can make a choice to either to deal with it bravely or we can let it crush our spirits.  I know that chronic illness is devastating and the pain associated with it is pure torture. (Trust me, I know.)  However, asking and seeking support is different than expecting it, complaining about it and demanding it. That is what self-pity is if you take a moment to think about yourself in your moments of weakness.

So how does one keep up the fight? You take it one day at a time. You get up every morning hoping that today is better.  You don’t stay in bed and think hopeless thoughts.  You live for today, you do what you can and you don’t allow yourself to worry about things getting worse. Be thankful for all the things you have rather than what you don’t have.  Strive for the strength and courage to accept chronic illness with self-respect and humility. Take care of yourself and those who love you and support you.  Enjoy the beauty of today and don’t spend your days worrying about tomorrow. This is all you can do and this is all any of us can do.

According to Désirée van der Heijde, MD, a professor of rheumatology at the University Hospital Maastricht in the Netherlands, today’s newer treatments along with more aggressive use of older treatments such as methotrexate, nearly half of the people with RA can – and should – achieve remission. For most of us with RA, it seems that the chance of remission is unlikely.  When I think of the idea, I think of something that lasts more than a few months and I don’t see that happening for me.

Here is the other side of the coin.  So, if someone achieves remission from rheumatoid arthritis, how is it remission if they continue to take medication for the rest of their life to stay to keep disease activity from returning? I read somewhere that if a person stays in remission up to one year, drug free remission is possible. For those of us who have been taking medication to treat rheumatoid arthritis for quite some time, (years, in fact) we don’t see this being a possibility.  If the chance is remission is similar to the chance of being struck by lightning, then drug-free remission is like finding the Holy Grail.

I know that this may sound a bit silly but for me, RA is part of who I am. I have had it for so long that I don’t know how to be without it.  It has changed my life so drastically that I can’t imagine being the person I was before RA came into my life.  I am not saying that I wouldn’t mind going back to living without pain but there are other things that have happened since my diagnosis that I don’t want to change. It is also part of my identity and while I know that I would evolve with the change should I be as lucky as remission, it is hard to see myself any different than I am now. I wouldn’t mind my life being easier but I am not sure what that would be like.  Feeling the pain of RA reminds me that I am human and that being human means I feel pain.

In the beginning, I just wanted things back to the way they were before RA. So, here are I am almost four years after receiving a diagnosis, and this is how things are now.  There is no back before RA because that is long in past.  I have found my comfort zone and I am okay where I am not.  A life without RA symptoms and pain is a small possibility but the reality is that either I stay where I am at or get worse. I have not really considered remission because it is probably like my law school dream. It will probably never happen. And you know what – I am really okay with that – no remission and not going to law school.  RA took so much from me but it also allowed me to become someone that I would be proud to know.  The person I was before RA took so much for granted.

Speaking of taking things for granted, my younger sister that had the fire called Monday and told me that they found a new place to live.  She told me up until that fire, she had taken so much for granted.  She didn’t realize that her possessions were merely things that were replaceable.  What is most important isn’t replaceable and for one moment, she had completely lost sight of that.  Rebuilding your life is a process that often times comes from a life changing event you never imagined. Whether it is a fire or an illness; it is all the same cycle and process.  Once you get past the initial shock, you can work towards rebuilding your life.

I am set to move to my new place on January 31. I am ready to move forward and past the reasons why I never felt at home where I am currently at.  Many years ago, I was laid off from a job I loved very much.  I was a single mother trying to make ends meet so I took the first job offer presented to me. That job never felt like a place I belonged. I never found it in me to put up pictures of my kids or to bring in items to add to my workspace to make it feel like my own. Needless to say, I only stayed there four months before I took another position. Moving to my current place kind of felt like that.  That annoying property manager didn’t help either but here I am moving to a new place that I am certain I can call home. I really feel good about this. I made arrangements for the movers and contacted the utility providers. Boxes are packed and more will be packed by Monday evening. I feel like this is yet another chapter in my life I am ready to put behind me.  I am moving on. With or without you, Remission.

Parenting is hard but parenting when you live with chronic pain is especially difficult. Parenting means you draw attention away from yourself and give it to your children because they need you. That can be difficult when you deal with daily pain and fatigue. Nonetheless, it is important to note that you are not the only one suffering from the effects of your chronic pain condition. Children whose parents suffer from chronic pain have many questions and are often insecure about the future. The best thing a parent can do is be open with children about the effects of chronic pain and while this is difficult, it is a necessity to make your child feel at ease.

I am a mother to a three year old and a preteen. My three year old understands that mommy hurts and I find that on the days that I am most stressed with pain, he responds by acting out. For example, the other night, I had an ice pack under my neck because I was having excruciating pain in my neck and shoulders. My three year old was misbehaving and when he realized he was not getting a response from me, he looked at me with the saddest eyes, laid down next to me and wanted to be held. He wanted my attention when I couldn’t give it to him. I did not know how to respond but I knew he understood and one of the things I have learned is that I can’t hide my pain from my kids. I hugged my three year old, told him that mommy’s ouchie would go away soon and that I would play with him when the ouchie was gone.

My preteen has questions about the future and whether things will get worse for me. I tell him that I am doing everything I can so that I do not get worse. He worries about schedules and routines and often asks what he can do to help. He wants to know who will take care of his brother and him and wants to know that someone will. What I have learned from this experience is that my honesty holds more clout than my telling him that “I don’t know” or that “I will be better tomorrow” when he knows that may not be true.

I don’t know what my response will be when they get older and if my condition worsens. I just know that life for them isn’t easy or normal because I am not healthy. I also know that they understand empathy and a lot of their peers don’t and probably never will. I know that they know honesty and openness and they know how to be caring and sensitive. As they get older, they will learn to deal with life’s obstacles with lessons that we have learned as a family dealing with the effects of chronic pain on our lives. For now, however, all I can do offer them normalcy as often and as best as I can.

The best any chronically ill parent can do for their children is to share their good days and good moments with their children and to prepare them for when bad pain days arise. It is also important that parents stay on top of their children’s moods and behaviors because children are just as affected by the emotional effects of chronic pain as parents are. However, children show their emotional responses differently than adults do.

I have dealt with chronic pain for a number of years now and I know how challenging it makes parenting. I have learned the importance of being honest with my children and not making promises that I cannot keep. Additionally, I know that hiding my pain is not good for any of us. First, it gives my children the notion that everything is all right when it isn’t and second, hiding it makes me irritable and short-tempered. My kids need me to be a parent despite chronic pain and I do that to the best of my ability – with and in spite of chronic pain.

As parents, we need to be the responsible for our own health and for our children’s security at the same time. That means we have to continue to be parents despite chronic pain and we pay particular attention to how our children are affected. Sometimes, that means parenting through the pain to offer them a sense of normalcy and other times, it means leaving the channels of communication open between you and your children.

This post originally appeared in the Jan. 2, 2012 Creaky Joints Newsletter.

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