Thursday, April 30, 2015

THE STAGES OF GRIEF - DENIAL AND ANGER


THE STAGES OF GRIEF - DENIAL AND ANGER

In my previous post I covered the Maslow's hierarchy of needs, looking at our needs and how our chronic pain affects them due to so many losses. If you have not had a chance to read it, you will find it informative. This was in the post called A Look at Our Losses.  http://functionallivingwithchronicpain.blogspot.com/2015/04/a-look-at-our-losses.html

Living with chronic pain leaves us with major losses forcing us to grieve the active, healthy, happy, functioning and productive human-beings we once were!  Having an understanding of how these losses (physically, financially, emotionally, relationally, sexually, etc.) affect us, pushing us into a grieving process, can help us work through these stages. Also, having an awareness regarding these stages of loss helps those of us suffering with chronic pain know this is normal and that we are not alone in all these emotions and behaviors.

Over the past five years, I have tried repeatedly to take the shredded pieces of my life and rebuild a new “normal”.  Finding  "tools" to be functional in my daily life to just get done what needed to be done, to take care of myself and our home, with all this physical and emotional pain was very hard to achieve. Throughout all this, I was grieving! Gripping tightly to what my life once was! I have struggled in my heart to find significance, a purpose, with where I was at.

THE STAGES OF GRIEF
Elisabeth Kubler-Ross, http://en.m.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross, developed the 5 stages of grief. Her main study was focused on death and dying. These are the natural stages we go through when we experience any loss in life. The stages are: denial, bargaining, anger, depression and acceptance.  In my next few posts on this blog we will look at how chronic pain sufferers cycle through these stages due to our multiple losses. These stages are meant as a guide and it does not mean we have to go through all of them, or all in the same order. We may find ourselves cycling back and forth from one stage to another, spending different amounts of time and intensity of emotion in each stage. Remember we all grieve differently, some are more verbal than others and some may keep it all locked up inside.

Many of us  have experienced many losses in life, we just want to get from one stage to another ASAP! This whole process seems to take forever, and there is nothing we can do to fast forward the process toward the final stage of acceptance! Although, I will admit that I have sought help with behavioral therapy to try and do exactly that!

After being diagnosed with yet another spine issue that required surgery, I actually went home and called a therapist for an appointment! At my first appointment I told her, "I just don't want to deal with this like before! I want to do it well and I want to do it fast! And I want to get back to work!"

DENIAL AND ANGER
Denial and anger seem to go hand in hand. Circling around from one thought to another to where it all builds and we get angry....really angry! Really, really, really angry! It can be a very intense time deflecting and expressing our emotions to what is happening and trying to rationalize it. Remember these are natural responses to our losses, often resulting in anger in many different areas, such as not being able to participate in events and circumstances. Also, it comes out in our behaviors, or attitudes towards others such as health care workers, family and friends, as well as yourself.

We may tell ourselves, "This is not happening to me!"  "This isn't that bad! I can do that!"  "They are wrong with what they are saying!" "I must have heard the doctor wrong!" Many even can't believe God is allowing this and become angry at Him. I found myself angry at the doctors for not giving me what I wanted- my health, so I could go back to my much beloved career! So I asked for a second opinion, which led to more opinions, they kept referring me elsewhere! Which I was not happy about but in the end it all was beneficial, as it led to proper diagnoses and proper treatment! During this time I was also angry at other health care workers, as well as some of the doctors for the rude things they said to me! I now have a fantastic team of doctors out of all those referrals.

Do know that it is appropriate for you to ask your doctors to explain again if you aren't understanding what they are saying or to go slowly while you take notes. They are fine with us calling and asking questions after the appointment. Or you can even make another appointment to discuss what you need too. You can even ask for a longer appointment! Make a list of your questions regarding your diagnosis and the treatment options. They, or their nurses, are able to call us and go over it again and answer your questions. I worked in the health care field and I know this is done all the time. I also have done it myself! So please, do yourself a favor and get your questions answered so you can understand any information you are not clear on! It can be a big help!

Please know that if the anger becomes unhealthy, lasting too long, not allowing you to move forward or causing violence, it is important to seek help with a professional counselor. You need to be safe, as do the people around you! Many therapists can offer advice on how to work through the anger! Please know, there is no shame in asking for help!

A PERSONAL EXPERIENCE WITH DENIAL AND ANGER
In August of 2010, I started with my denial of all this happening AGAIN with my neck! (My first surgery was in 2008). Co-workers were telling me for months to go to the doctor. But the surgeon had told me at my post-op appointment that there was nothing I could do to harm my cervical fusion or disc replacement I had. It was just "normal" pain. I was ignoring it, denying it,  pushing through it and worked until in December it was so bad I could no longer lift my arms, hold up my head, etc. The pain increased to a 9-10/10. There was no more denying I had to get medical attention.

The prognosis from the surgeon threw me right into anger, bargaining and depression. . At first they said they would not even try to do surgery. My chances were very slim that there was anything they could do to help. I would have to learn to live that way.WHAT?!?! Then after several tests, they said they would do the surgery for there were other issues they found, but there was no guarantee that I would even have a decrease in pain and it could possibly even get worse.  So, what do you do when pain is so high already and they say all that? You cry...you panic....you get angry....you pray...you try and listen to all the choices and eventually you grasp onto what little hope they offer. You hope they are wrong. You hope that it will get better and not worse. You hope that if you have yet another surgery it will help.

The surgery decreased my pain a little bit. I am very thankful for that! My pain averaged 8-9/10 months after surgery, after my pain medications.  I was referred to pain management to try multiple injections, anti-depressants and anti-seizure medications used for nerve pain, plus multiple other treatments. I was in and out of the ER with anaphalaxis, other allergic reactions and extreme side effects. For 15 months I sought help from 5 specialists, a plethora of tests, two rounds of Physical Therapy and 2 more behavior health specialists. It took 15 month to finally find someone that would allow me to receive the medications needed to stop me from frequent episodes of curling up in a ball, teeth chattering, shaking, barely able to breath and often vomiting!

Currently, I am mostly at a 7-8/10, after my medications. It all depends on if I am able to limit myself from "overdoing" activities that  will irritate the damaged nerves in my neck! Activities such as folding laundry, cutting a steak or salad up, stirring while cooking, etc. I often fail at limiting myself as they tell me, for I have things that need doing! Don't we all?  Everyday these minor things leave me in bed in pain. At these times, even using my thumb to type on my iPhone causes severe pain in my arm, shoulders, neck and head.

Why do I share all this? I wanted to share this very private and personal story so you know that it IS possible to accept living with chronic pain. Living like that you ask? It does get easier at times...and at other times it gets harder. But, overall, it is your choice as to what you do with it all.  I want others to know it’s worth the fight to finally get to this acceptance! I hate to see other chronic pain sufferers get stuck along the way in the negative aspects of the anger and depression! Down the road there are others needing us to help them find their new “normal!" We need to lend a hand to each other in this journey! We do not have to let it overtake us!

We will cover the rest of the stages in my next few posts! 

Blessings!



Friday, April 24, 2015

FOCUSING ON OUR BLESSINGS

FOCUSING ON OUR BLESSINGS

Living in chronic pain can leave us focusing on our physical, emotional, spiritual, relational and financial losses of how pain impacts lives! Dwelling on all these things becomes a vicious cycle that is hard to break! All this affects our well-being! It's easy for others to tell us to look at the bright side of life! LOL! Right!

Myself, being a chronic pain sufferer, I do know how hard it is to try and focus on our blessings when we are faced with so many issues! (you can read my diagnoses and history at -  http://functionallivingwithchronicpain.blogspot.com/2015/04/learning-new-normal-living-with-chronic.html)  It just takes all the emotional strength we have to even try to see in the darkness of all the negativity to even consider one small thing being a blessing! But no matter how small the blessings, we really need to focus on them, they can lift up our spirits! There can be a light in our darkness!

I decided to take the weekend to focus on blessings! In most places the sun is shining, spring is bringing forth warmth, flowers, bright green little leaves on trees are popping out and the birds are singing! Focusing on all this and many of our other blessings, lifts our spirits, can help us be more calm, relaxed, and overall, help us feel better emotionally! It is almost like being transformed like a butterfly emerging from a cocoon. It gives you a sense of freedom and hope!

FOCUSING ON BLESSINGS AFFECTS US PHYSIOLOGICALLY

There are many scientific studies that show that focusing on blessings (some call it positive thinking) changes the chemicals in our brain called serotonin, dopamine, endorphins and oxytocin. Some call these hormones our natural antidepressants. Here's an informative article from the Huffington post that describes all these hormones specifically, so I won't go into them.  http://www.huffingtonpost.com/thai-nguyen/hacking-into-your-happy-c_b_6007660.html

Also, science has proven that people that are more likely to focus on their blessings are not only happier, but more compassionate, generous and helpful. They are even more likely to make progress towards personal goals, and make healthier choices such as exercising and eating better. All this can increase feelings of well-being as well.  I can't exercise because of my spine issues and chronic pain but my pain doctor has encouraged me to walk at a slow pace for 2 minutes,10-12 times a day! I can tell that really makes me feel better not only physically, (when I am actually able to do it), but emotionally. I was "pushing through the pain" to walk just 5-10 minutes at P.T. which would leave me in bed for 3-4 day! So this is really helpful to me! And has worked!

"We can only be said to be alive in those moments when our hearts are conscious of our treasures!" -Thornton Wilder

It's good that science can back up physiological responses for what we do with our thoughts and how we respond to life, as well as the physiological responses to exercise! Our bodies have been wonderfully created! Here are a few things (of many!) that have been suggested to us, for our own well-being, for thousands of years!

Proverbs4:23 Be careful what you think, because your thoughts run your life.

Philippians 4:6-9King James Version (KJV)

Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.
And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
8 Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.
Those things, which ye have both learned, and received, and heard, and seen in me, do: and the God of peace shall be with you.



As a first step in focusing on your blessings,  I want to encourage you to keep a blessing's journal! Just try it! Just for the a few days and see what happens! I had actually gone out and bought a pretty spiral bound journal to keep my blessings listed!! It really does help ones spirit feel better! I use this as a tool in my new "normal!" It breaks the vicious cycle of all the negativity! AND as stated above, science has proven it can change your brain chemistry and make you feel better! Most of all, the Creator of our beings has given us instructions on what to do with our thought life! Check that out!

There are an unbelievable amount of "suggestions" scattered all throughout the Bible! It is a literal treasure chest! For a population of people that seriously have major issues with this, one would think looking in a place where the answers are freely given would be a much sought after activity!

I also like to use Pinterest and pin things that bring me happiness and joy! Many of us know how fun that is!

I also wanted to share that while researching blessings and scientific studies, I came across this page to where you can post a blessing and they keep a count on them! I thought it was kind of fun so I added a blessing! Add your blessing too! Fun!
http://www.ourblessingscount.com/

Well, I'll be back later to post more about blessings! Hubby's taking me away for the weekend! I'll try to post some pictures for you all to see some of the blessings I most enjoy!

 Don't forget to share my blog with others and subscribe so you won'tmiss my posts!
There is a link for Google+ as well as Pinterest that you can tap on to share!

Thursday, April 23, 2015

A LOOK AT OUR LOSSES

A LOOK AT OUR LOSSES

SOME THOUGHTS ON OUR LOSSES AND BASIC NEEDS

As I attempted to write my post the past few days to cover the theory, by Elisabeth Kubler Ross, on the 5 Stages of Loss, denial, bargaining, anger, depression and acceptance, I realized I needed to change my topic. My intention was to help with awareness regarding these stages of loss so that all of us suffering with chronic pain would know this is normal and that we are not alone in all these emotions and behaviors. But, as I was writing about the stages of loss I realized I needed to address the losses themselves first and why they have so much effect on our lives.

Dealing with the horrendous unrelenting pain is bad enough for us all! But then to deal with so many losses, as well as the horrible emotions due to all these losses we endure, can seem unrelenting and leave us feeling as if a part of us has died. It is hard to realize all THIS is a part of our "new “normal!”

Dissecting all the effects that chronic pain has on my life the last 4 years with all the losses it brought and trying to put them into words is pretty daunting! I just have to admit this is very difficult to write about. Please know I am not complaining! I just want to be real in letting you know that trying to zero in on one particular area to write about, when so many subjects to cover are flooding my mind, as well as being in pain, is extremely challenging! As I attempt to break down all the losses to write about for the next post on "The 5 Stages of Loss," many emotions I went through just kept coming back! We really do need to take a look at them, as hard as that is to do, and see why they affect our lives so drastically. Then we can look at how to rebuild from there!
.
MASLOW’S HIERACHY OF NEEDS

Maslow’s theory, http://en.wikipedia.org/wiki/Maslow%27s_hierarchy_of_needs, basically defines that each person has definite needs that are common to all people.  Need is defined as something that is desirable, useful or necessary. These human needs are physiological and psychological conditions that an individual must meet to be able to meet a state of health or well-being.  In theory, we require to have the basic needs met before we can go on to the next level. As these definite needs, “that are common to all people,” are met we then can grow and eventually find self-actualization.

Sunday, April 19, 2015

Brave

Brave

One of my neurologists had said that I was "very brave" to live in pain every day as I do. I just thought that was a very odd thing to say. I defined brave as a soldier, or some heroic character. It really touched my heart, so when I got home I Googled the definition. It opened my eyes to a new way of looking at all us chronic pain survivors!  I tend to demean myself, so one of my "tools" for my new "normal" is to stop doing that! If you do this to yourself, please stop! Be kind to you! And go a step further and please encourage others to be kind to themselves as well!! You, dear fellow chronic pain survivors, are extremely BRAVE!! And don't let anyone ever demean you for this life we endure every single day! 

brave
brāv/
adjective
  1. 1
    ready to face and endure danger or pain; showing courage.
    "a brave soldier"
    synonyms:courageousvaliant, valorous, intrepidheroiclionhearted
    boldfearlessgallantdaringpluckyaudaciousMore



noun
  1. 1
    people who are ready to face and endure danger or pain.
  2. 2
    dated
    an American Indian warrior.
    synonyms:warriorsoldierfighter
    "an Indian brave"

verb
  1. 1
    endure or face (unpleasant conditions or behavior) without showing fear.
    "we had to brave the full heat of the sun"
    synonyms:endure, put up with, bearwithstandweathersuffer, go through; More

National Pain Report interview


National Pain Report interview

I wanted to share the interview that was published by the National Pain Report about my new blog! The National Pain Report which is a daily news report that publishes informative news for what is going on on a national level with pain. If you have not signed up to be on there mailing list, it would be a good thing to do to keep yourself informed. NationalPainReport.com is the #1 online independent news source covering chronic pain and pain management from a patient’s perspective.  I do believe a part of our new "normal" as chronic pain sufferers is to be informed and involved as one is able!


Michigan Pain Survivor—Learning a New “Normal”
By Sheri Kay
Editor’s Note: Sheri Kay spent 23 years practicing in Occupational Therapy as a treating therapist with patients with multiple types of disorders and diagnoses, as well as a manager. After two cervical spine surgeries and one lumbar surgery, resulting in nerve damage adding to the already debilitating chronic pain, the Grand Rapids, Michigan woman hasn’t worked in her much loved career for five years. In a conversation with the National Pain Report, it became obvious that she has a heart for helping others living with chronic pain and we offered her an opportunity to speak out which, we are happy to report, she has accepted. Here’s her story:

I spent nearly a quarter of a century helping people recover and be as independent as possible with whatever their physical and mental diagnose/disease left them to deal with in life. Often in rehab this means learning to live life in a new “normal”.

For the last eight years, I’ve been one of those people learning to live life in a new “normal”. Everything I worked so hard to achieve in my career and life had been shredded to pieces by my spine issues and that leading to a neurological nerve disorder, called Central Pain Syndrome, leaving me with moderate to severe constant chronic pain. I loved my career, but one cannot fight nerve pain from damaged nerves, it fights back with a fierce intensity and the more you try to “push through” the pain, the more it pushes right back. Think of it as trying to fight through your worse tooth ache. You just want it taken care of. Well, with this diagnosis there is no taking care of it. Everything was tried. I was told by many specialists, as compassionately as they can be that they were, “very sorry, there is nothing that can be done...” I will have to learn to live with the 24/7, 7-8/10 pain (that is after the medication used to help).  I did jokingly ask a physician to decapitate. He was horrified at first until he realized I was joking.

It is a challenge dealing with multiple spine issue, nerve damage and chronic pain. It leaves completing daily tasks difficult to impossible, as well as extremely irritating to the affected nerves, causing even more pain. It is a vicious cycle.  I’ve been implementing my skills in Occupational Therapy (adaptive equipment, compensatory techniques, energy conservation, time management, etc.) on myself to be able to achieve as many tasks I am able that most people just automatically do on a daily basis.

Prior to my first cervical surgery I fought neck pain for 18 years while being a wife, mother of two kids, working and going to college. Of course I tried many non-invasive treatments (i.e. chiropractic, Physical Therapy, acupuncture, medical massage). It got to the point in 2008 where I had no choice left but to have surgery.  I was unable to hold my head up, it wanted to flop over. I was having occipital neuralgia, I couldn’t hold things, had a hard time controlling my arms, my legs were giving out and I was suffering “Charlie horses” in my throat, arms and legs.   I had surgery on the 3 herniated cervical discs. One of which was sitting against my spinal cord.  It was so successful that I wished I had done it years before!  I was able to go back to work in 12 weeks!

It was a struggle of course. The surgeon said it takes up to a year for the nerves to totally “calm down”. Not quite a year later I started having problems again with my neck, shoulders, arms and hands. It was tough working through the repetitive heavy lifting; pushing and pulling therapists in long term care do every day. The neck issues continued to the point I was unable to perform simple tasks, let alone the heavy tasks. I was unable to reach for the telephone, write documentation, do computer work, hold my arms up to drive, cutting, chopping and stirring food, lifting a cup to drink, brushing ones hair and many activities of daily living.  A person tries to keep going, to push through it and denies what is going on. I believe most do. But, once one becomes so extremely affected from all the decreased coordination, weakness and pain there just is no ignoring it any longer.

So, in 2011, after trying many noninvasive procedures to get rid of the pain, I had to have surgery again. There were no guarantees given.  When all you have left is hope, you have to try! It didn’t get worse, the 24/7, 9-10/10 pain decreased to 24/7, 8-9/10, after the pain meds. That’s a plus!
 
I was referred by the surgeon to pain management.  They were given my MRI results, diagnosis of post-laminectomy syndrome and all documentation from the surgeon. Including a statement, “this patient will never be without pain. I did everything the pain management team requested to relieve this pain, (all the while enduring unbelievably horrific, unprofessional treatment from the majority of staff at the pain clinic (medical assistant, physician assistant, Nurse practitioner and even the pain doctor). They treated me like a drug seeker.  They were right about one thing—I was seeking, but what I was (and am) really seeking was relief from the horrendous pain and a way back to my life! When you are curled up in a ball, teeth chattering, body is shaking, you’re hardly able to breathe and vomit from the pain, one tries all one can to find relief!

I did everything I was told without questions. (I did notify the referring surgeon and my PCP of the treatment and was encouraged to try and continue).  I had the multiple injections in my neck, Physical therapy, behavior therapy, trialed multiple anticonvulsant and antidepressant meds used to treat nerve pain. I ended up with many horrendous side effects; four trips to the ER for anaphylaxis and one for TIA like symptoms form another. I was a very compliant patient. You have to show you are trying!! Because they tell you if you don’t, they will kick you out. As many seeking help at a pain clinic know! Then how do you find help with records showing you aren’t trying?! The attitude of others follows you.

After 8 months of many issues (I won’t go into details here of the verbal abuse and treatment at the pain clinic) I asked my PCP for a referral for another opinion as to my spine diseases. I was referred to a wonderful, kind, understanding neurologist who then referred me to the University of Michigan Neuropathic-pain clinic in Ann Arbor, Michigan. At my first visit at the U of M I heard, “Well! First, let’s see what we can do to get you out of the pain!” (Thank You, God! It was 15 months that I had been suffering!) After several trips and yet more diagnostic tests I was told I had multiple cervical spine issues.  One of the diagnoses given was Central Pain Syndrome due to the nerve damage with the spinal nerve causing the severe pain. It was explained that it was very similar to Complex Regional Pain Syndrome, which I was originally diagnosed with. I was actually told to tell healthcare workers I had CRPS due to “they would be more familiar with that.” Central Pain Syndrome
So, I finally got a great team of doctors (making it a total of 8 doctors I had seen) to help me along  on my bumpy journey trying to figure out my new “normal”.   In 2013, I started having issues from 3 herniations in the lumbar area. I worked for a year with 2 different physical therapists and on my own to avoid surgery because there was a concern the Central Pain Syndrome would most likely spread. The Central Pain Syndrome has spread to my lower body and 5 months after the surgery the area operated on re-herniated.

Many say it is hard for others to understand what living in chronic pain is like. It can be very hard to describe. It takes time to be totally heard.  I have had many healthcare workers not have the time to listen to my full description. I actually had some tell me part way through, “That’s enough!” “I think we get the idea.” One person even held her hand up to stop me. But seriously, if they are going to treat me, I really needed them to understand. It took me a long time to realize the variety of pain I was having. It was confusing to me! It wasn’t until I came across the McGill Pain Scale, and http://pain.about.com/od/testingdiagnosis/ig/pain-scales/McGill-Pain-Scale.htm, was I able to fully realize the extent of the variety of pain and the severe intensity.

On a physical level, explaining the pain is different for everyone. For me, it is different types of pain, the neuromuscular neck and back pain from the spine disorders and the neurological pain from the nerve damage in the neck, as well as from the central pain syndrome, http://en.wikipedia.org/wiki/Central_pain_syndrome.

It is located in the back of my head, neck, throat, shoulders, upper back and chest, armpits, arms and a bit in my hands. Since my last surgery it has spread to my low back all the way down my legs. It is a constant, moderate to severe in intensity, made worse by repetitive movements such as,  walking, bending, reaching,  pushing, pulling, stirring, chopping, typing, writing, lifting a glass to drink, etc. It is irritated when I am touched or hugged or just bumped.  I have to use a pillow to rest my arms on while sitting as the weight of them being unsupported is painful. The weight of jewelry on my neck and wrist, as well as clothing that has elastic bands is intolerable. I can at times wear some jewelry for a bit, but am often seen whipping it off due to the intensity of nerve irritation. Stress can cause it all to increase as well.

Even just tilting my neck wrong to do activities as simple as working at a table or desk doing bills, typing or crafts can lead to episodes of occipital neuralgia, http://www.ninds.nih.gov/disorders/occipitalneuralgia/occipitalneuralgia.htm, due to nerve damage high up in the neck, at the base of the skull. If I turn it wrong it will pop and these episodes can last for days to weeks. There is a deep gripping, burning, aching in the neck and shoulders as well as the low back. The sensations of "pins and needles;" shocks like sticking your finger in a light socket, as well as bursts of sharp pain similar to the pain of a toothache have been the most noticeable areas controlled by the medication I am on! I get “Charlie horses” when I yawn, at times leaving the front of my throat popped forward requiring massaging to relax it to go back into place. When I get the “yawns” if able, I will go to bed to avoid repeated yawning.  I have great fear of someday having my neck stay that way and not go away. My voice gets gravelly at times.  I couldn’t sing prior to my cervical spine surgery, but now I REALLY can’t sing.

It is extremely hard having one’s life overtaken by such horrendous pain. IT DOES NOT GO AWAY!!! IT IS ALWAYS THERE! ALWAYS! It keeps you awake at night.  It is there as you are waking up. With every move!  Every. Single. Breath.  It can lead to panic attacks with wanting to escape your body!

On an emotional level, your life as you once new it is shredded to pieces.  It is like a part of your soul has died. You try to hold tightly to what was and do all you can to get it back. Everything is overshadowed by ever present intensity of the pain. You endure so many losses in so many areas of your life.  It leaves you angry, bitter, isolated and grieving.  It is very hard seeking help, to be treated as a drug seeker from the moment you enter the examining room, to hear the demeaning comments by some healthcare workers, (and this is with objective findings from a CT Myelogram and multiple MRI's, as well as statements from my surgeon as to what is wrong!), being interrogated, to not be listened to about what you want to share, to keep putting yourself in these vulnerable situations to  try to get better so you can have your life back, only to be told repeatedly, “ you have to learn to live with the pain for the rest of your life.”  

The worst is being unable to pick up my precious grandson when he holds his arms out to me or to just up and play with him or babysit him whenever needed.

So, what is it like? It at times can be like you just want to die. You stare out the window at the clouds floating by and wish to God you could just float away with them! But, of course, that would never be an option. The tremendous pain it would cause others would never be healed!

It tears up many relationships. People in our lives can’t understand this invisible hell! It leaves the sufferer hearing many demeaning comments such as, “Take it for all its worth!” referring to Disability benefits. Or, “There MUST be SOMETHING you can do at work!”, “Those doctors hand out pain pills like tic tacs! I know a lot of pill poppers!”  “I wouldn’t have time for that!” “I work in pain all day long! I have for years!” “I am sure there is SOMETHING that they can find to treat you!” "I am sure you will get better!"

Then there are the silent accusing looks. The shocked looks when you tell someone, “’Yes, I would actually go back to work! I loved my career!” These comments and attitudes cause a whole new layer of pain and grieving in ones heart for they are often said by “loved ones!” Those we dearly need support and encouragement from.  As I said, it adds a whole new level of pain and loss.

I am very blessed to be going through this journey with the great support of my extremely caring, understanding and loving husband of 34 years, my wonderful children and their spouses, and my precious grandson, as well as close friends that “get it”! Although some see part of what I deal with for I am not able to hide all of it, only my husband sees the “real stuff.”  He sees the me that still grieves the loss of my much loved career, the me hiding behind the makeup, smiles and laughter.  The me that struggles  to coherently participate in conversations while socializing,  who can’t sit for very long, has to lay down throughout the day and who still curls up in a ball in pain.  He sees the difficulty I have with simple things such as just holding a camera to take my much loved nature pictures. The list goes on! It’s very hard seeing the helplessness and pain in your loved ones eyes when they are watching.

While exploring and researching information on chronic pain over the past few years, I found it enlightening to come across so many chronic pain support groups out there. That is awesome, yet horrible to realize that there were so many sufferers! One thing for sure, I realized I wasn’t alone with this! Many sufferers were, as I am, suffering the multiple losses and emotions mentioned previously, we are all seeking answers on so many issues, trying desperately to grasp a hold of something, anything, to make this life better or at least somewhat tolerable! One thing for sure, it is great to have a community to share your thoughts and feeling and to know they all get it! There are groups that share a lot of great information!

Then there are groups are hard to be a part of. It takes looking around to find one that fits your personality. Some can become overwhelming with so many members that your posts can get passed over. You can be left with feeling left out. The negativity, bitterness and anger at times can be overwhelming. There are groups that aren’t well monitored and allow inappropriate discussions like how to “safely” take your medications and drink alcohol (which there is not safe way!) Or discuss how to wean off your medications, how to occasionally take an extra med even though it is not prescribe that way, exercises you can do, (which are very unsafe practices and can lead to death in some cases). So a person has to look around a bit to find a place they are comfortable in.

I have tried repeatedly (with God’s help) to take the “shredded” pieces of my life living with chronic pain and rebuild a new “normal”.  Throughout learning to live with all this physical and emotional pain, gripping tightly to what was, I have struggled in my heart to find significance, a purpose, with where I now belong.

One cannot escape going through the stages of loss this puts the sufferer in: denial, isolation, anger, bargaining and depression to hopefully someday finding acceptance. And this acceptance can lead to a sense of peace and joy in a new “normal.” Yet, I am still gripping tightly to what my life use to be! It's just hard to let go! I have slowly found moments of peace and joy, less fleeting, taking over my heart. Maybe it is because God's creation is being brought back to life with springtime finally arriving, but I am feeling renewed and ready to live again!  

I want others to know it’s worth the fight! I hate seeing chronic pain sufferers get stuck along the way in bitterness and anger! There are others needing us to help them find their new “normal!’ We have to lend a hand to each other in this journey!

I have decided to use what this journey of living in chronic pain, as well as my skills of working in Occupational Therapy; to help other chronic pain sufferers put together a “tool box” with tools to build their new “normal.” I am diving into the life of blogging to share these things! That will give me a place to share these tools for fellow chronic pain sufferers to help us put together our new “normal”.

I’d love to have you join us at my new blog, Functional Living with Chronic Pain.  You can subscribe at/Functional Living with Chronic Pain - Learning a New "Normal"