Robin Roberts from ABC's Good Morning America has come out with a book called Everybody's Got Something. It chronicles her life struggles with not only breast cancer but also a 'pre-leukemia' cancer called MDS. She has been very open and honest about her journey through it all. In promotions for this book she speaks about the title being something she learned from her mother from a very early age. Like most children Robin would complain about this or that and her mother's response was always "everybody's got something". It helped Robin learn to be grateful because everybody does have their own struggles even when we don't see them outwardly. Robin says that when she learned of her cancer(s), her mother came in with the same "everybody's got something" only these words were filled with compassion and love rather than a mother's stern lesson to be learned attitude. Robin is full of compassion, kindness, and likability. She is also so brave and so smart to want to open up her most intimate moments in her life to help spread knowledge. Her compassion is a compassion, in my opinion, that we all need to pay forward.
I have said many times that is why I started my blog. In my deepest darkest hours of wondering and worrying about the illnesses and therefore life challenges I was facing, I had no where to turn. I could only find articles speaking about my illnesses. It was rare if at all that I would find some relatable information that I could apply to my own life and feel like I had a model to follow. I would often never find a single person let alone an article speaking to someone's journey similar to my own. Much like on television or in a book, we never find a character or scenario that matches our lives perfectly, but we do find traits and bits and pieces of things that do apply to us. Sometimes only that small strand that links us, helps give us a new insight or validates our emotions. I struggled with that... I still struggle today. My blog was started with the intention to inform, connect, and learn. In it all, I have found it very cathartic.
Everyone, including myself, look at others and think they are so brave to expose what makes most of us feel bare. Certainly that is how I feel about Robin. But we need to change our perspective on this a bit. It is something to be praised when people open up about taboo information that many out there actually need. The truth behind the illnesses and the journeys we all go through is that these are not weaknesses. Illness is not a weakness whether it be physical illness or mental. Feeling emotions like pain, sadness, numbness, loneliness, and grief does not make one weak, only human. Not one person in this world wishes they were sick, homeless, hungry, lost, or dealing with a loss. Somehow we all face it in some form or another in our lives. It is the way we approach these struggles that shows our strengths and weaknesses. All of us trudge through putting one foot in front of the other. We often say when someone passes that they "lost the battle with [cancer, depression, heart disease, PTSD]" when in reality no one has lost any battle. We are human beings with no guarantee of endless life on this planet. None of us are immune to pain. We all pass at some point. Where we go from there is based on your own beliefs.
As human beings we have to support each other. As human beings (said so many times before) we all have struggles. We will all face loss. We will all face illness. We will all faces problems related to money or family or friends. We will all have bad days. How can we move along day by day as if there is not a problem in the world? Why do we all feel the need to put on a blank smile when we are falling apart on the inside? Many of us live a façade. We certainly don't need to scream our pain to the world, but we do need to connect. In that connection we could be on either side of the coin- the shoulder to cry on or the crying. If we don't communicate we will continue to attach these stigma's of weakness to any trait or situation we don't agree with or, possibly, don't understand.
Let's take away the stigmas. Let's understand that facing these struggles head on and being open about them is what should be done. It can make someone else in this world feel less alone. It could start a path for more to follow. It could bring more knowledge and insight into your own pain. Like a smile that is contagious, compassion should fall right in line. Knowing that although not everyone is going through the same thing you are, they are facing some challenge in their own life. Why step on someone else's heart when it is the last thing you would like done to yours?
Maybe you don't have a blog. Maybe you have a personal journal. Maybe you are not comfortable writing a book or a blog for the whole world to see. But we all have at least one person we can talk to. Sharing our own experiences will not only lighten our hearts, it can help heal others. Like a game of telephone, the knowledge often gets passed along. Never feel ashamed about anything. Everyday is a new day and it is never too late to change. You do not have weaknesses, you have challenges. Remember that.
Tuesday, April 22, 2014
Wednesday, April 2, 2014
Lesson Learned- Competitive Bidding Program
Moving is always an adventure. Most of us loathe the process, but enjoy the change. Moving to a new state entirely for the first time in your life while you are ill and receiving new technology in treatment is more than an adventure. I am but a sad New Mexican who is ignorant to how the world outside of New Mexico works. The Federal part of our wonderful country is a layman's understanding as well as the history for myself. But New Mexico is like a small town that runs at a very low speed and is off the beaten track.
Along this first year in Texas, I have been through my share of awakenings. In the short five or six weeks I had before having my gastric stimulator implanted, I had to move in, familiarize myself with the area, get address changes for everything under the sun, switch my son's insurance, and do all the preliminary stuff for the surgery. I thought all that was hard. I thought all I had to do is get acquainted with new doctors and get a new driver's license. Boy, was I wrong.
Doctor's alone have kept me on my toes. Of course there are several and frequent appointments for my stimulator. The first year of recovery and calibrations is tough. I also have had to establish with a neurologist, an endocrinologist, a dermatologist, and a rheumatologist. If you have read some of my previous posts you will know that a rheumatologist is no longer necessary as the symptoms seem to be a latent version of adrenal insufficiency that has been difficult to pinpoint. I am still needing a urologist for interstitial cystitis and an ophthalmologist, but the task seems so daunting at the moment I have procrastinated greatly. Unfortunately, it seems as though my primary care doctor needs to be replaced. That's a topic for another post, but let's just say she's not the best with being thorough or with her bedside manner.
I am on Medicare so none of this is easy. Less doctors in Texas take Medicare so it was like finding a needle in a haystack just for the doctors and services I need. I have changed prescription drug plans three times. Recently, I ran into a new road block. This story has plenty of twists and turns. Are you ready?
Back in early November, an 18-wheeler somehow came into our apartment complex and smashed our mail center. It is just a gazebo with the mail boxes all around. Supposedly his GPS took him the wrong way, but any logical person would know not to turn into an apartment complex in an 18-wheeler. Needless to say, every one's mail was in there. The apartment management had no real answers for us other than, "You can now pick your mail up at the post office until the insurance can get us a new mail center." What about the mail that was in our boxes at the time? A mystery yet to be solved. Here we are at the beginning of April and we are still picking up our mail at the post office.
I had been running low on pump supplies for a few weeks now and I had not received any word about my automatic shipments like I usually do. Medicare makes you go through a third-party supplier and they usually send me an email the day it is shipped. I finally called them. I was informed that Medicare is no longer contracted with them. They have switched to a "Competitive Bidders' Market" in our area. I was advised to call Medicare to move forward because I should have received a notice back in October or November. Do you see where this is going?
Just a few months earlier, I had been working with my doctor's office on getting a new pump supply prescription because mine had expired. We began the process in late September, but the back and forth was finally done with in November. I received everything I needed. Now, switching over to a new supplier meant getting a new prescription. I knew this would be a potentially long process, but gritted my teeth and pushed through, step by step getting increasingly more frustrated. I couldn't get my old supplier to send out complimentary supplies to get me through. They could not transfer the old prescription; don't ask me why because they gave me an answer that makes absolutely no sense as most things in the medical field do. The manufacturer somehow had no record of me since 2011. Well Medtronic, I bought a new pump in 2012 that you sold me, I have been receiving supplies since than that the third-party gets from you, and finally I have an Enterra gastric stimulator implanted in my abdomen that you all made and registered for me eight months ago. (Everybody clap your hands for eight productive months) They also refused to send out some "hold-me-over" supplies all due to the fact that no one has a "current" prescription except the supplier who no longer supplies me. Aaahh
I start putting one foot in front of the other to begin the long process of finding a new third-party supplier. When I called Medicare they gave me three phone numbers of three different suppliers. The first two did not supply pump supplies. Check them off. The third said they did. Yay....they began the registration and started the paperwork right away to get me squared away. It took only a week of back and forth confusion this time to get the new prescription done. I finally received my supplies last Friday, and they were the wrong supplies.
It was a generic brand of supplies that claimed it works for all pump models including...and it gave a list of manufacturers and models. My model was not on the list. Next step, call the manufacturer to see if the generic is even possible. There is a high likelihood that the pieces do not fit my model and may possibly crack it. I turned back to the supplier. Suddenly, no one was available in the pump department to service my call that day so I left a message. That felt odd. I did tons of research on the Internet, because where else do you turn for honest information (haha). I kept coming across the same information the manufacturer had given me. Nothing can be done on a weekend so I tried to block it out until Monday. I did contact my NM diabetic educator to ask for supplies because no office here has them on hand. I also contacted my sister who has a similar model of pump. Both are doing what they can to help with supplies until I have this straightened out. I finally gave in and paid cash for supplies to give me a bit of a cushion. Stockpile baby, stockpile. Then I get a call saying they will not ship out supplies because I am a Medicare patient who needs to go through a third-party supplier with a prescription.
On Monday I called the third-party supplier, All American Medical, and notified them of the mistake. I was informed they do not supply my particular needs. Back to Medicare I go. I got two phone numbers for the "Competitive Bidders' Program". Surprise, surprise. These suppliers do not supply pump supplies. At this point I am thinking, "this competitive-bidding program is definitely not organized or handled well". When I was waiting on hold for the umpteenth time with Medicare, I decided to go online to see if I could pull up some names for this "Competitive Bidders' Program". Thank the Lord, I did. 17 were listed for my zip code so I went straight down the list. I called everyone of them I could and was very specific about the supplies I needed for my particular pump. About five businesses in, I found one. They only supply Medtronic pump supplies. Phew. Now, I await the aligning of the third-party and my doctor's office. This time I talked to my doctor's nurse and drilled into her what I need the prescription to say so I can leave this trouble behind as quickly as possible. By this time, I believe she feels the same.
Little by little, you learn how to navigate the world. New Mexico is not in the "Competitive Bidders' Market" so I had never dealt with this. Apparently, the program is new across the board but some states do not fall into it. After ripping my hair out, losing my cool with every single person I talked to, and spending all weekend trouble shooting with my family's help, I now know exactly what to ask when dealing with Medicare and third-party suppliers. I also know that screaming does not help a thing. As if at the ripe ol' age of 31 I didn't know that, but, ya know, long term stress can manifest an entire person you do not recognize. Luckily, the beast in me is only in view sparingly and this year I am releasing all demons so soon I can be the me I have always known....or possibly, quite possibly, a better me.
I am noticing more energy. I am noticing a more nourished look throughout my body. I am noticing a lighter heart. The volunteering, church, my son's school and teacher, and enjoying our new surroundings has really started to bring to light the me I used to know and embrace. Being so ill everyday can wear on you and most of us feel a great deal of guilt, inadequacy, and grief when going through a change like a diagnosis of a new disease along with its symptoms. Sometimes we get lost in it all and forget who we really are or think because the disease has caused limitations that somehow limits our personality or self worth. This healing process and recovery from what I have been through these past few years including the gastric stimulator implant has been a long road, but proving to be worth it. Lessons learned, wisdom gained, strength and resilience abound and a new heart and mind rise from the ashes made by the bridges of our "old" selves burned like the Phoenix.
That was a bit off track, but the lesson of "no matter how many times I think I've got it covered" i.e. my insulin pump supplies and Medicare, there is always a wrench coming in, eh hem "Competitive Bidders' Program", to teach you a new lesson. Along the way more layers of yourself are pulled back to open up a new part of you.
I certainly don't mean this post to come across like I am worse off than anyone else or that I have seen more pain than others. I know that is not the case by any stretch. I just realize everyday that I have not seen every struggle or I would know how to face them more appropriately.
Never stop learning....just try to stay level headed unlike I did.
Along this first year in Texas, I have been through my share of awakenings. In the short five or six weeks I had before having my gastric stimulator implanted, I had to move in, familiarize myself with the area, get address changes for everything under the sun, switch my son's insurance, and do all the preliminary stuff for the surgery. I thought all that was hard. I thought all I had to do is get acquainted with new doctors and get a new driver's license. Boy, was I wrong.
Doctor's alone have kept me on my toes. Of course there are several and frequent appointments for my stimulator. The first year of recovery and calibrations is tough. I also have had to establish with a neurologist, an endocrinologist, a dermatologist, and a rheumatologist. If you have read some of my previous posts you will know that a rheumatologist is no longer necessary as the symptoms seem to be a latent version of adrenal insufficiency that has been difficult to pinpoint. I am still needing a urologist for interstitial cystitis and an ophthalmologist, but the task seems so daunting at the moment I have procrastinated greatly. Unfortunately, it seems as though my primary care doctor needs to be replaced. That's a topic for another post, but let's just say she's not the best with being thorough or with her bedside manner.
I am on Medicare so none of this is easy. Less doctors in Texas take Medicare so it was like finding a needle in a haystack just for the doctors and services I need. I have changed prescription drug plans three times. Recently, I ran into a new road block. This story has plenty of twists and turns. Are you ready?
Back in early November, an 18-wheeler somehow came into our apartment complex and smashed our mail center. It is just a gazebo with the mail boxes all around. Supposedly his GPS took him the wrong way, but any logical person would know not to turn into an apartment complex in an 18-wheeler. Needless to say, every one's mail was in there. The apartment management had no real answers for us other than, "You can now pick your mail up at the post office until the insurance can get us a new mail center." What about the mail that was in our boxes at the time? A mystery yet to be solved. Here we are at the beginning of April and we are still picking up our mail at the post office.
I had been running low on pump supplies for a few weeks now and I had not received any word about my automatic shipments like I usually do. Medicare makes you go through a third-party supplier and they usually send me an email the day it is shipped. I finally called them. I was informed that Medicare is no longer contracted with them. They have switched to a "Competitive Bidders' Market" in our area. I was advised to call Medicare to move forward because I should have received a notice back in October or November. Do you see where this is going?
Just a few months earlier, I had been working with my doctor's office on getting a new pump supply prescription because mine had expired. We began the process in late September, but the back and forth was finally done with in November. I received everything I needed. Now, switching over to a new supplier meant getting a new prescription. I knew this would be a potentially long process, but gritted my teeth and pushed through, step by step getting increasingly more frustrated. I couldn't get my old supplier to send out complimentary supplies to get me through. They could not transfer the old prescription; don't ask me why because they gave me an answer that makes absolutely no sense as most things in the medical field do. The manufacturer somehow had no record of me since 2011. Well Medtronic, I bought a new pump in 2012 that you sold me, I have been receiving supplies since than that the third-party gets from you, and finally I have an Enterra gastric stimulator implanted in my abdomen that you all made and registered for me eight months ago. (Everybody clap your hands for eight productive months) They also refused to send out some "hold-me-over" supplies all due to the fact that no one has a "current" prescription except the supplier who no longer supplies me. Aaahh
I start putting one foot in front of the other to begin the long process of finding a new third-party supplier. When I called Medicare they gave me three phone numbers of three different suppliers. The first two did not supply pump supplies. Check them off. The third said they did. Yay....they began the registration and started the paperwork right away to get me squared away. It took only a week of back and forth confusion this time to get the new prescription done. I finally received my supplies last Friday, and they were the wrong supplies.
It was a generic brand of supplies that claimed it works for all pump models including...and it gave a list of manufacturers and models. My model was not on the list. Next step, call the manufacturer to see if the generic is even possible. There is a high likelihood that the pieces do not fit my model and may possibly crack it. I turned back to the supplier. Suddenly, no one was available in the pump department to service my call that day so I left a message. That felt odd. I did tons of research on the Internet, because where else do you turn for honest information (haha). I kept coming across the same information the manufacturer had given me. Nothing can be done on a weekend so I tried to block it out until Monday. I did contact my NM diabetic educator to ask for supplies because no office here has them on hand. I also contacted my sister who has a similar model of pump. Both are doing what they can to help with supplies until I have this straightened out. I finally gave in and paid cash for supplies to give me a bit of a cushion. Stockpile baby, stockpile. Then I get a call saying they will not ship out supplies because I am a Medicare patient who needs to go through a third-party supplier with a prescription.
On Monday I called the third-party supplier, All American Medical, and notified them of the mistake. I was informed they do not supply my particular needs. Back to Medicare I go. I got two phone numbers for the "Competitive Bidders' Program". Surprise, surprise. These suppliers do not supply pump supplies. At this point I am thinking, "this competitive-bidding program is definitely not organized or handled well". When I was waiting on hold for the umpteenth time with Medicare, I decided to go online to see if I could pull up some names for this "Competitive Bidders' Program". Thank the Lord, I did. 17 were listed for my zip code so I went straight down the list. I called everyone of them I could and was very specific about the supplies I needed for my particular pump. About five businesses in, I found one. They only supply Medtronic pump supplies. Phew. Now, I await the aligning of the third-party and my doctor's office. This time I talked to my doctor's nurse and drilled into her what I need the prescription to say so I can leave this trouble behind as quickly as possible. By this time, I believe she feels the same.
Little by little, you learn how to navigate the world. New Mexico is not in the "Competitive Bidders' Market" so I had never dealt with this. Apparently, the program is new across the board but some states do not fall into it. After ripping my hair out, losing my cool with every single person I talked to, and spending all weekend trouble shooting with my family's help, I now know exactly what to ask when dealing with Medicare and third-party suppliers. I also know that screaming does not help a thing. As if at the ripe ol' age of 31 I didn't know that, but, ya know, long term stress can manifest an entire person you do not recognize. Luckily, the beast in me is only in view sparingly and this year I am releasing all demons so soon I can be the me I have always known....or possibly, quite possibly, a better me.
I am noticing more energy. I am noticing a more nourished look throughout my body. I am noticing a lighter heart. The volunteering, church, my son's school and teacher, and enjoying our new surroundings has really started to bring to light the me I used to know and embrace. Being so ill everyday can wear on you and most of us feel a great deal of guilt, inadequacy, and grief when going through a change like a diagnosis of a new disease along with its symptoms. Sometimes we get lost in it all and forget who we really are or think because the disease has caused limitations that somehow limits our personality or self worth. This healing process and recovery from what I have been through these past few years including the gastric stimulator implant has been a long road, but proving to be worth it. Lessons learned, wisdom gained, strength and resilience abound and a new heart and mind rise from the ashes made by the bridges of our "old" selves burned like the Phoenix.
That was a bit off track, but the lesson of "no matter how many times I think I've got it covered" i.e. my insulin pump supplies and Medicare, there is always a wrench coming in, eh hem "Competitive Bidders' Program", to teach you a new lesson. Along the way more layers of yourself are pulled back to open up a new part of you.
I certainly don't mean this post to come across like I am worse off than anyone else or that I have seen more pain than others. I know that is not the case by any stretch. I just realize everyday that I have not seen every struggle or I would know how to face them more appropriately.
Never stop learning....just try to stay level headed unlike I did.
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