Embracing life with chronic pain.

Posts tagged ‘anger’

Vulnerability 

As we blog about our lives, our experiences, our hurts, our symptoms, etc. and the impact that chronic illness/conditions, we make ourselves vulnerable.  Vulnerable in the obvious way of “putting ourselves out there”….yet also to the remarks of others.

For the most part, I have been so thankful for the positive comments, the likes, the shares…that demonstrate that I am reaching others who are benefiting from my writing. 

I have chosen to use this format to also save what is left of my sanity. LOL  It allows me to vent my emotions, to vocalize the “hidden symptoms”, to educate others that are not chronically ill to better understand those of us that are…

It is still frustrating, even after all this time, when a negative or demeaning comment is made.  It can also feel like a knife to the heart or a punch to the stomach.  It can also make me angry…angry more at the fact that the person doesn’t understand the reason behind the writing.

I am not looking for a pity party…I am not looking for sympathy…

I want to impart understanding…to reach out to others like me that are dealing with chronic illness/conditions. 

It has helped me so much to read others blogs…to join on-line communities…to speak up for those that cannot vocalize their fears, their frustrations, their pain. I gain strength in the fact that I am not alone! This is what I want to share!

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Insurance – The Frustration!

As the chronically ill know too well, insurance is often SO very frustrating!

I spent today dealing with insurance…yes..the frustration. I refuse to allow insurance to dictate what care my specialists and/or doctor provide to me…their patient.  It is my specialists and my primary care doctor that are in the “trenches” with me…doing their best to help improve my quality of life.

I have said this before…I SO appreciate my specialists and primary doctor.  I feel truly blessed to have such wonderful medical providers.  I most appreciate their honesty.  They have each said that my case is “extremely unique….unusual….not really sure how they can help”…yet each one has and is doing his/her best to help me!

Then there is insurance.  Insurance TRULY is NOT on the side of the chronically ill…they have no concept on dealing with hidden illnesses and hidden conditions!  We do not “fit” into their wonderful “scripts” or their “books”.  They choose to have their “doctors” dictate to our doctors what is best for us.

YES!  A doctor who has NO IDEA about us!  One who has never met us…never seen our physical pain…our anguish…our tears…our frustration…our losses!

I for one am just fed up with this!  I am fed up with insurance dictating to my pain specialist that I my pain pump trial is denied because they do not have an MRI of my back! (Yes…you read correctly….they want an MRI of my back with the pinched nerve….SAY WHAT???  Where is pinched nerve in the diagnoses of Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS-C, and Pelvic Floor Syndrome.) I am fed up with insurance saying that the new medicine that my pain specialist thinks will offer some relief must be “pre approved” by insurance…again…they must have the ultimate say if it is correct for me or not.  How would THEY know???

So I DID NOT take any of this lightly. I have been in contact with insurance…I was on the phone regarding why they refuse to allow the pain pump trial…I was on the phone with the “prescription drug” arm regarding the pre authorization.

I was told by the “prescription drug” arm that the medication should have been added back in January to my possible drug list…that insurance calls my “formulary list”.  Yeah….right…my specialists and/or doctor have a crystal ball!  They can look into the future and come up with what will work and will not work. YOU HAVE GOT TO BE KIDDING ME!

Needless to say…I FINALLY got a phone number for the actual insurance itself so that I can follow up with them in the near future.  I want to ask them WHY they think that THEY know better than MY specialists and/or doctor who are working WITH me on a regular basis!

All of this frustration TAKES ITS TOLL!  The stress exacerbates my conditions which are all ready flaring because of additional infection.  The amount of energy it takes is INCREDIBLE!

As an individual living with constant, severe, chronic pain, my extremely limited energy reserves are used to just get through the day…to have some time with my family….on a really good day…maybe even to have a friend come over to visit. Yet I feel it is important to stand up for myself…to stand up on behalf of ALL of us who have to expend energy that we DO NOT have to stand up for ourselves!!  To battle not only our illnesses/conditions but to battle our insurance companies for our needed medications and/or treatments.

This IS NOT how the insurance system should work. This is the UGLY side that most individuals will never have to deal with…most can just go along completely unaware. AND, most sadly of all, I worry for those who have chronic illness and do not have the ability, the stamina, or the determination to fight for what is best for him/her!

Insurance = Frustration

I am sure that everyone who has a chronic illness/condition has found himself or herself in the situation of being SO frustrated with Insurance.

I had received the call and all seemed set for my test for the pain pump.  I was excited…nervous…ready!  Of course, had to go off the pain med that had been helping…

Then the phone rang!  Insurance had denied my doctor’s request to allow the test to proceed. I immediately called my insurance company to find out why.  I was then told that they had not received the “MRI that showed the pinched nerve”….

What is wrong with those people????  I have no back problem….Insurance obviously paid no attention to the information that was presented to them by my doctor….

My conditions?  Fibromyalgia/Polyarthralgia/Chronic Pain Disorder….hmmmmm were does a pinched nerve in the back come in????  IF it was ONLY that simple!!!!!

Yes….I was exasperated…my body was then completely overwhelmed with exhaustion after the roller coaster!  Pain was elevated….even more than normal because of the lack of pain pills…

Needless to say….I crawled in to bed last night and gave in to complete….total exhaustion.

Now waiting while my doctor takes up the fight….he will have a Peer-to-Peer with my insurance company to push for the test….

Now back to the waiting game!  Hopefully it will only be a week or so before all can be rescheduled…

I am just SICK and TIRED of Insurance playing “Doctor”….they do not know what is best for me!  My doctors/specialists who are working so diligently to try to help me are the ones that should be allowed to do their best to help me!

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