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Friday, October 31, 2014

Taking A Break

I've had a rough week. I'm not even going to try to "sugar coat it" for you, it sucked. I have been trying to express my feelings in writing but every time I write it down it either sounds like a pity party or  like I have just regurgitated a fucking Hallmark card. The simple truth is I got another diagnosis, this time a ovarian cyst. Not a big deal I know but just another item on the ever growing list that has become my life. I'm being strong and all that positive shit, but let me tell you something it is fucking hard.

People always tell me that I'm strong and they could never do what I do. That kinda puts me on some kind of a pedestal that I feel I have to stay on so I don't let everyone down, and honestly I'm just fucking tired. I'm just ready for a break, just a reprive from my life for a moment. I don't have a endless supply of possitivity, I have to refill it with my own soul and spirit. I pray meditate and tend my soul to keep it full but even that is not enough at times.

Don't let your condition define you, well when you have CON DI TIONSSS its hard not too. Clearly I have some work to do. My entire job is taking care of myself, and sometimes I fall short. My life defines me and my issues define me just as your career as a artist,  teacher or countless other jobs would define you. My life is my career, my livelihood and my reality, and I make mistakes. There is no school for my career, no guide book no steps to follow and no degree. Its just perseverance and survival. So the question everyday that I ask myself  is "do you want to keep fighting for your life?" AND EVERYDAY I ANSWER YES. I will keep answering yes everyday till I don't want to fight any longer. Make no mistake I value every single moment and every second I have and I'm thankful for them all. But its hard and standing on that pedestal of strength, well sometimes I need to sit down, I'm not giving up I just taking a break  I'm not sitting on the ledge thinking everyday wheather or not  I should jump on the contrary  I'm sitting on ledge watching the sunrise and just taking a fucking break

Thursday, October 16, 2014

Driven by knowledge

nurtured by hope

fed by optimism

In Time

In times of sadness I find joy
In times of pain I find healing
In times of grief I find peace
In times of love I find passion
In times of fear I find strength
In times of war I find compassion
In times of hunger I find sustenance
...and in time I will find purpose, in time I'll find meaning, in time I'll find you

Monday, October 13, 2014

Ebola and Transplant

The outbreak of Ebola Virus Disease or (EVD) has raised many concerns in the medical community regarding transplant and the risk of contamination during transplantation. The thought of potential donor coming in contact with the transplant recipient is frightening. The Centers for Disease Control (CDC) recommendations have been issued to the Organ Procurement Network (OPN) and to the transplant centers as well as The United Network of Organ Sharing or (UNOS), and although the risk of contamination by an undiagnosed individual is low it has not been studied.  As a result the CDC has recommended that EVD screening be included in evaluation of potential donors. The OPO's should also consider travel as a factor in evaluation, partly due to the the 21 incubation period of EVD.  If you would like more inforrmation on this topic you can visit unos.org or cdc.gov

Sunday, October 12, 2014

Several diseases and conditions can lead to organ failure such as heart disease, Cirrhosis, COPD, Cystic Fibrosis, Diabetes, Heapatitis,  Lupus, and Hypertension to name just a few.  If you are living with these conditions and transplant has become an option maintaining your health with these types of conditions can be difficult.  Keeping yourself healthy as possible is must for transplant. Transplant facilities want you to be at your absolute best to ensure a successful outcome of your transplant. The healthier you are the better you will heal and the likelihood of rejection is lessened. 


Thursday, October 9, 2014

Keyhole Kidney Surgery

http://m.bbc.com/news/health-29556902
After my rant yesterday about the insurance issue, I had a thought that somehow people will do what is right. The fact is some people are just driven by  greed and doing "the right thing" just isn't part of their thinking. The lines of right and wrong are constantly blurred by corporations, banks, conglomerates, and government. The question of how to change the broken system is inherently flawed because the belief that doing the right thing isn't as profitable. Many people are well intentioned, myself included and at the end of the day I have what I need. But so many don't and that is not fair. People say that you should work for what you want and quit complaining, and life isn't fair... there again that too is also flawed. Some of us  are not highly educated which leaves us poorer than most. If we somehow manage to squeak by, and get an education and a job with insurance we are almost guaranteed to be in debt for most of  our thirties paying off student debt. If we do get insurance we are still living week to week and one major hospitalization away from financial and economic ruin. And we did the right thing.

So what do we do? We change the way business is done!! People first, and yes it is that simple. We punish those who are without or in need, we treat them  as a lesser people that are not worthy of existence. Why is it so hard to help those in need and do what is right?  We change it... it can be done!

Germany just recently announced that all universities will offer free tuition, Sweden gives maternity leave for a year and  free day care, Australia has a minimum wage of $16.00 per hour and avoided the recession that we sank into, Frances gives it's workers three weeks vacation per year and 30 hour work week, Other countries offer free insurance and invest more in education. Did the countries come unraveled from investing in their own people? No they didn't actually the opposite occurred and they thrived. Not all the the countries have it right but the line in the sand has been drawn and it  clear that we need to do better. We are keeping the division of the "have and have nots" flowing long enough. Doing right for one, does right for all. We will all benefit from doing what is right for humanity instead of doing what is  right for  profit margins. 

I vow to do better and to encourage others to follow, one act of kindness will destroy one act of greed.





























































































































































































Wednesday, October 8, 2014

Insurance

Insurance the word that sends me into a complete tizzy. I can not for the life of me understand how they come up with the rules and regulations they follow. The thought process of these entities defies every ounce of common sense. I have dealt with (and somehow managed to survive) through illness despite having to deal with Medicare Medicaid and private insurance, because lets face it they don't make it easy. The reason I say "survive" is because of their complete disregard of logic, for example: When I became diabetic I could only have one vial of insulin a month, even though I was a Type 1 Diabetic and that required two diffident types of insulin to maintain, and only 25 test strips. This sets you up to fail which means hospitalizations which cost money. Then  the coverage provider proceeds to complain that health cost are on the rise and cut us back even more on our benefits. Bankrupt Medicare and blame the patients. I'm sick and tired of the continued bullshit. Apparently each of us need to acquire our own personal lobbyist to go up on capitol hill and stand up for us or better yet we all go together and make the politicians answer for the fucking mess they have created.

All the scientific data reports and the like all say it is better to prevent disease than to treat it, yet at every turn we are held hostage by ignorance. Its not hard, if your doctor who is accredited by the state and federal government  that feels  I need a fucking prescription then that should be good enough for the insurance company to approve me for said drug . I can recall several of these episodes the list is infinite, and I'm sure it will continue to grow as long as our interest as patients is not addressed.

Example number one: Dad's scooter

Carrier: Medicare

Condition:  Two time lung cancer survivor, COPD, lung dissection, type 2 diabetic on continuous oxygen, Arthritis in his feet which keep him from walking with out aid.

Problem: Medicare finally approved a motorized scooter for my father, had scooter for 2 years. Batteries started not keeping a charge and tires needed replacement. Dad calls scooter company for maitainace and the company has closed. Dad calls Medicare and ask them who he may contact regarding his scooter to get repairs. Medicare does not have record of the scooter and dad has no paper work because the company failed to give him any are no out of business. 

Result: Medicare has refused to repair because of no record on file, however they will not let him get a new one because they know he already has one. Medicare has refused to honor a new prescription for a new scooter because he can't replace his scooter for five years. In the meantime while this is being sorted out my dad has no way to shop or get his medicine, because this is his only means of transportation.


Status: As of today this is still pending and my dad does not have a operational scooter.

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Example number two: My friend Mita


Carrier: Medicaid

Condition: Diabetic, Double transplant recipient, Neuropathy, disabled

Problem: Accidentally broke her vial of insulin, Tried repeated attempts to get another prescription filled and has been denied by Medicaid each time because it exceeds her allowable amount for the month. Her doctor has provided her with samples of insulin she has to go pick up. Which is problematic because of her disability

Status:  Doctor has resorted to change her type of insulin in hopes of circumventing the system, and get her a prescription of insulin. She currently waiting on prescriptions.

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Example number 3: Me

Carrier: Private Insurance Medicare Supplement

Condition: Former Diabetic and double transplant recipient

Problem: Cut off within a week of acquiring insurance because Medicare did not report my transplant. Reinstated insurance the following week. Tried to make me pay a penalty for getting insurance at time I was not eligible, which was not true. Threatened a second time to cut me off because of they stated I had no drug coverage for more than 63 days. Billed me a late fee for not paying in September even though  I could not pay till the policy was processed ( I acquired insurance on 9/1/2014. )

Solution: Countless phone calls between the agents and the carrier and a trip to the doctor to get a statement signed to reinstate my insurance.

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These are just a few examples of the complete chaos and stupidity that spews from these agencies that are supposed to care for us. Clearly Obama care has fell flat on its collective ass, and I know there are issues and I certainly do not pretend to know how to fix it, I do know however that they can not remain as they are. Times they are a changin'.... And the sooner the better!! Clearly it boils down to money......Perhaps that's why I can't grasp the way these angencies think, because I value people more than money. My only hope is that we can somehow get these insurance angencies to see us as people not a meal ticket.