Well, liver treatment is done, for the month of July. Three weeks reprieve until the next round. It usually takes me about two days to recover and gain my strength back.
Looking back to Tuesday, when I got the WONDERFUL news about Social Security. Hoping our government can remove their heads from their asses long enough to cut me a check....LOL It's not really funny, though. Is anyone wondering why SS has no money? Allow me to enlighten you. My SS is retroactive to October of 2009, the last day I was able to work. Social Security pays back pay. I, however, do not qualify to receive that pay because that would be called double dipping. I was paid by UNUM for all of those months. I completely understand. It's only fair......or is it? Here is where it gets all cloudy and political. Since I can not receive those monies, one would assume that they go back into the fund. Well, that's where you'd be wrong. UNUM gets that money. My back pay adds up to almost 40,000 dollars. WHY should the insurance company, again, be subsidised by the government? I paid them a premium for years before I had to file a claim. Wouldn't that cover it? I do understand the double dipping, but wouldn't that money be better spent by ME putting it back into the economy? I don't find this to be ethical and don't know why it is even legal. Let's not give the money to the sick person who still has thousands of dollars in medical bills, that wouldn't be right. After all, we've already paid them A FRACTION of what their salary was. I know..... let's give it to a huge corporation so they can misuse it. All I can say is WTF? Its no wonder America has no money.
Watch out Washington. I am diligently persuing how to become an advocate/lobbiest for people in my situation. I can honestly say that the majority of things I have set my mind to, in this life, I have accomplished. Medical and insurance laws seriously need to change, in this country. I'm mad as hell and I'm not going to take it anymore!!! Everyone write to your Congressman/woman and ask them why this is. Ask them if they're one of the geniuses who voted for it, if they are...make sure they don't get re-elected. Last time I checked, we're still a democracy. The people running Washington sometimes need a reminder that the US Constitution begins with WE THE PEOPLE....... not we the elite of Washington.
Thursday, July 28, 2011
Wednesday, July 27, 2011
There IS a God!!!
How big is that angel sitting on your shoulder, today? This is the first thing my attorney said to me when I answered the phone yesterday afternoon. My response, Ummmmm.......why? Because Social Security just called and they have granted your claim. HALLELUJAH!!!!!!!!!! I just began to cry. I apologized to my attorney because I was crying pretty hard and she said, "you go ahead and cry because I know that this is a life saver for you". Then SHE started to cry. Oh my. What wonderful news. Now I can get Medicare and actually pay for my liver treatments. I'M NOT GOING TO DIE IN THE NEXT TWO YEARS!!!! It is still sinking in. All I can say is thank you God. He did hear all of our prayers, and I say OUR because I know a lot of you have been praying for me. Thank you. God heard you. God saw all of my sleepless nights and collected all of those tears as I've cried myself to sleep many nights. He is so Faithful.
Now...to update you about my nurse situation. The new nurse was awesome, but she's not, ultimately, going to be my nurse. Figures. There is a new guy who will be assigned to me. The awesome nurse who came said that she would come with him, his first few times,though. That made me feel better. I guess there is always a lot of turn over in Home Health Care.
Would love to write more, but today is starting out to be a very nausiated morning. Day 3, of the treatment, is uually this way. Lots of television and lots of throwing up. It's all good because I'm getting Medicare!!!!
Now...to update you about my nurse situation. The new nurse was awesome, but she's not, ultimately, going to be my nurse. Figures. There is a new guy who will be assigned to me. The awesome nurse who came said that she would come with him, his first few times,though. That made me feel better. I guess there is always a lot of turn over in Home Health Care.
Would love to write more, but today is starting out to be a very nausiated morning. Day 3, of the treatment, is uually this way. Lots of television and lots of throwing up. It's all good because I'm getting Medicare!!!!
Monday, July 25, 2011
Today is Monday............
It's Monday morning, at 9:00am. I have all of my medical supplies and and meds laid out Now it's a waiting game to see when my nurse will arrive, or if anyone at Community Home Health has even notified her. I have been through 4 nurses in about as many years.
I began getting my treatments at home close to 5 years ago. The hospital was just getting way to expensive, even with insurance. Twenty percent is a lot when the bill is in the thousands. My nurses at the hospital asked me, one day, why I wasn't getting my treatments at home. Until then, I didn't even know that was an option. I began to research the possibility, while my nurses began to teach me everything I would need to know. They began to teach me about how to hang an IV bag, the quirks of an IMed machine and how important a sterile environment is. I was always under the impression that air in the line will kill you instantly, via One Flew Over the Cuckoo's nest. Funny, those little air bubbles won't hurt you at all. I learned how to numb the site where the port is and access the port. Never thought I would be plunging a 11/2 inch needle into my own chest. It still makes me kinda sick to my stomach, even when the nurse does it. The nurse I have now is a pro, though not always the case. One nurse aked my Mother if she wanted to try it because she had lost her glasses. Yeah, REALLY! Well, as we speak.......I just got a call that the nurse is on the way. Another NEW nurse. Seems my old one has quit, yet again. I HATE new nurses! Some are good at ports and some try to tell me they're good, but they don't have a clue. God please let her know what she's doing. Some nurses get the port with the first stick, others have taken up to 5 sticks. That gets stressful for everyone invoved!!! I usually cry and feel very nausiated when that happens. Ohhhhh......good thoughts, good thoughts. I'll let yo know how it goes!!!!
I began getting my treatments at home close to 5 years ago. The hospital was just getting way to expensive, even with insurance. Twenty percent is a lot when the bill is in the thousands. My nurses at the hospital asked me, one day, why I wasn't getting my treatments at home. Until then, I didn't even know that was an option. I began to research the possibility, while my nurses began to teach me everything I would need to know. They began to teach me about how to hang an IV bag, the quirks of an IMed machine and how important a sterile environment is. I was always under the impression that air in the line will kill you instantly, via One Flew Over the Cuckoo's nest. Funny, those little air bubbles won't hurt you at all. I learned how to numb the site where the port is and access the port. Never thought I would be plunging a 11/2 inch needle into my own chest. It still makes me kinda sick to my stomach, even when the nurse does it. The nurse I have now is a pro, though not always the case. One nurse aked my Mother if she wanted to try it because she had lost her glasses. Yeah, REALLY! Well, as we speak.......I just got a call that the nurse is on the way. Another NEW nurse. Seems my old one has quit, yet again. I HATE new nurses! Some are good at ports and some try to tell me they're good, but they don't have a clue. God please let her know what she's doing. Some nurses get the port with the first stick, others have taken up to 5 sticks. That gets stressful for everyone invoved!!! I usually cry and feel very nausiated when that happens. Ohhhhh......good thoughts, good thoughts. I'll let yo know how it goes!!!!
Sunday, July 24, 2011
What's wrong with this picture?
Very interresting....is the least I can say about the current dilema in which I find myself. I am a single female who just turned the "Big 50". I have worked, and paid into our system, since I was sixteen years old. By my calculations, that is 34 years of paying Uncle Sam. I must be honest; Through high school and college my contributions were minimal, though I did still work and pay taxes. As I have gotten older my "contributions" have become more substantial, especially in the last 21 years. I am sure that over the years my contributions, by way of taxes, have been used to pay for worth while projects like schools, parks, and anything having to do with the betterment of childrens lives. No problem. Even the welfare system has it's place in our society. I never really complained about taxes, eventhough as a single woman, with no children, I got royally robbed. The extent of that robbery has become very evident to me in the past two years, however.
In October of 2009 I had to leave my job, of almost 20 years, and go on disability. I have a disease called Porphyria. It is a genetic, chronic, incurable, progressive disease. It involves the liver and it's ability to metabolize correctly, to put it very simply. It is really a rare and complicated disease, qualifying it to be registered under NORD (National Organization of Rare Disorders). I receive treatments through a port, in my chest, on a monthly basis. I have done these treatments for the past 18 years and am currently using my third port. When I first started getting these treatments it was no more than a 24 hour stay at the local hospital. Eighteen years later, it is taking 31/2 to 4 DAYS to accomplish about half of the results that I used to enjoy. The progression of the disease has caused me to have neuropathy on my left side that is pretty significant, chronic pain in my joints-bones-and nerves, weight gain and general inability to do much activity that involves walking or standing. Especially since I have been up-graded to a Morphine patch, recently. Prognosis is not good, to say the least. Here in lies the problem...............
I am a Cosmetologist, by trade. The past 18-20 years of my career were in education. I traveled all over the United States, to Canada once and Puerto Rico several times, for my job. My title was Artistic Director and it was a salaried, corporate position. Part of my benefit package was disability insurance which I paid into on a bi-weekly basis. When I had to finally call it quits, in October of 2009, I applied for long term disability. UNUM, the company that I had paid into for years, denied me. I appealed and won. HOW is it legal to take someones money for years, in premiums, then deny when they have a claim? How is it okay for them to then force me to apply for Social Security benefits? HOW, I ask you again, is it legal for an insurance company to force me to collect my Social Security benefits early only to subsidise so that THEY get out of their obligation to pay my disability? It should not be this way. Laws need to change in this regard. I have applied for Social Security Disability and was denied. I have not worked for almost two years. They have all of the statements from my doctors, as well as the records from my nurses who access my port and administer my IV fluids. This information isn't ENOUGH for the Dr's at the determination board to decide that I am, in fact, disabled. ARE YOU KIDDING ME???? I have appealed to Social Security and UNUM actually provides me with an attorney to fight Social Security. Yeah, wrap your head around that for a second. UNUM would rather waste money on attorneys to fight Social Security, than just pay the claim. I have to say ARE YOU KIDDING ME again, to Social Security though. I, again, have paid into SS since I was 16 years old. Where is it when I need it? My COBRA ends in October of this year, which will leave me with NO insurance or way to pay for my treatments. The cost is outrageous. Imagine 4 days of IV every month. Without these treatments I will DIE!!!! No one seems to care. I have looked into every alternative I can find for insurance or help with medical assistance. I can't collect Medicaid because I have too many assets. I own a home and car and have a retirement IRA, none of which add up to a whole hell of a lot. Too much to receive any help though. I was then directed to the Hoosier Health Program. It is designed for Indiana residents who don't have insurance. Because of my health, my premiums would be $900.00 per month. I don't know about you, but I couldn't have paid that when I WAS working. I have written and called my Congressman, Mike Pence and my Senator, Richard Lugar to request any assistance that they may be able to give with my appeal for Social Security. I was told that I would be given a hearing before a judge to determine if I am, in fact, disabled. The catch is that I won't get that hearing for TWO MORE YEARS! That is how backed up SS is in Indiana. With my insurance ending in October of this year, I will basically be paying for my medical care out of pocket, which I can NOT afford. I recently sold my beautiful Buick Lucerne, just so I could pay my medical bills. HOW, in America, is it okay for people to fall through the cracks like this? WHO is there to turn to for help? WHY must I lose everything I worked for because I am ill? It's just NOT OKAY.
As I began this Blog, I will end it. What is wrong with this picture?
In October of 2009 I had to leave my job, of almost 20 years, and go on disability. I have a disease called Porphyria. It is a genetic, chronic, incurable, progressive disease. It involves the liver and it's ability to metabolize correctly, to put it very simply. It is really a rare and complicated disease, qualifying it to be registered under NORD (National Organization of Rare Disorders). I receive treatments through a port, in my chest, on a monthly basis. I have done these treatments for the past 18 years and am currently using my third port. When I first started getting these treatments it was no more than a 24 hour stay at the local hospital. Eighteen years later, it is taking 31/2 to 4 DAYS to accomplish about half of the results that I used to enjoy. The progression of the disease has caused me to have neuropathy on my left side that is pretty significant, chronic pain in my joints-bones-and nerves, weight gain and general inability to do much activity that involves walking or standing. Especially since I have been up-graded to a Morphine patch, recently. Prognosis is not good, to say the least. Here in lies the problem...............
I am a Cosmetologist, by trade. The past 18-20 years of my career were in education. I traveled all over the United States, to Canada once and Puerto Rico several times, for my job. My title was Artistic Director and it was a salaried, corporate position. Part of my benefit package was disability insurance which I paid into on a bi-weekly basis. When I had to finally call it quits, in October of 2009, I applied for long term disability. UNUM, the company that I had paid into for years, denied me. I appealed and won. HOW is it legal to take someones money for years, in premiums, then deny when they have a claim? How is it okay for them to then force me to apply for Social Security benefits? HOW, I ask you again, is it legal for an insurance company to force me to collect my Social Security benefits early only to subsidise so that THEY get out of their obligation to pay my disability? It should not be this way. Laws need to change in this regard. I have applied for Social Security Disability and was denied. I have not worked for almost two years. They have all of the statements from my doctors, as well as the records from my nurses who access my port and administer my IV fluids. This information isn't ENOUGH for the Dr's at the determination board to decide that I am, in fact, disabled. ARE YOU KIDDING ME???? I have appealed to Social Security and UNUM actually provides me with an attorney to fight Social Security. Yeah, wrap your head around that for a second. UNUM would rather waste money on attorneys to fight Social Security, than just pay the claim. I have to say ARE YOU KIDDING ME again, to Social Security though. I, again, have paid into SS since I was 16 years old. Where is it when I need it? My COBRA ends in October of this year, which will leave me with NO insurance or way to pay for my treatments. The cost is outrageous. Imagine 4 days of IV every month. Without these treatments I will DIE!!!! No one seems to care. I have looked into every alternative I can find for insurance or help with medical assistance. I can't collect Medicaid because I have too many assets. I own a home and car and have a retirement IRA, none of which add up to a whole hell of a lot. Too much to receive any help though. I was then directed to the Hoosier Health Program. It is designed for Indiana residents who don't have insurance. Because of my health, my premiums would be $900.00 per month. I don't know about you, but I couldn't have paid that when I WAS working. I have written and called my Congressman, Mike Pence and my Senator, Richard Lugar to request any assistance that they may be able to give with my appeal for Social Security. I was told that I would be given a hearing before a judge to determine if I am, in fact, disabled. The catch is that I won't get that hearing for TWO MORE YEARS! That is how backed up SS is in Indiana. With my insurance ending in October of this year, I will basically be paying for my medical care out of pocket, which I can NOT afford. I recently sold my beautiful Buick Lucerne, just so I could pay my medical bills. HOW, in America, is it okay for people to fall through the cracks like this? WHO is there to turn to for help? WHY must I lose everything I worked for because I am ill? It's just NOT OKAY.
As I began this Blog, I will end it. What is wrong with this picture?
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