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"ARMAGEDDON" ARMAGEDDON AND DISEASE OF THE 20TH CENTURY During the past six (6) months experienced the HIV and AIDS knocking on my home's door with a vengeance. Please read the words below and their definitions. HIV and AIDS are broadening the impact of "words" and their impact on my life. I will explain my experiences to date. DISCERNMENT-the act or processes of exhibiting keen insight and good judgment. Those of you that have followed my 16 year journey living with the HIV virus know I always considered myself well versed, well educated regarding the possibility of disease progression and the impact likely felt on "my world." Ever aware of the very real possibility that one day, I might suffer the opportunistic infections and disease progression to AIDS. David, my companion, has beaten me to this awful reality. When I noticed his progression from HIV+ to AIDS the term "reality fix" now has a new meaning to me. Even years of witnessing it first hand with my friends, watching the disease portrayed in the media had taken my hope that with years of long-term "non-progression" both David and I would beat this thing. Reality now kicking hard, I urged David to quit work, eliminate stress and enjoy our lives together. After much soul searching, I decided to close my companies, not only to care for him but also to save his life. Congress cloaking elimination of many Medicare and other health benefits as "health care reform" had a profound impact on the stress level in both of our lives. The decision to cease operations based on two primary issues. One, the last two years were filled with relentless, unending stress related to Medicare benefit elimination's and reductions. Reform and cost savings is one thing, the total elimination choice and options, another. Only the largest of the "huge" remain. Small privately owned Home Health Agencies, Hospices and the like have now gone the way of the family farm. Big Brother has made it impossible to continue the business of caring and providing for those in need, and with same stroke of a pen literally killing us personally by eliminating thousands of privately owned health care providers like ours, causing stress levels to reach incalculable proportions. My partners and I decided it was time to close. It was probably the hardest thing I have ever experienced. Seeing the fear in our patient's eyes, employees, their families became tortuous. Business built over a period of more than twenty years, hundreds of employees and thousands of patients cared for, gone virtually overnight. David and I loved this work. Very fortunate to have worked through a labor of love over many years, only to watch our Government's elected officials destroy it. Now, David and I are facing his illness, financially bankrupt. Fiercely active in raising his three teenagers, attempting to provide emotional and spiritual support, suffering from HIV+ Chronic Illness, and personal bankruptcy. First things first. I applied for unemployment benefits and began looking for work 6 months ago. Oklahoma's state AID's care coordinator, Jane Berryman (a living angel on earth) took over David's case and began the process beginning a new journey for both David and myself. Getting into the system of the DHS and Social Security. SOCIAL SECURITY BENEFITS & DISABILITY INCOME. (All those other initials, SSI, SSDI, DHS, HDAP, scary and overwhelming without proper guidance and help.) Collecting unemployment, looking for work I grew painfully aware of my own inability to function in a normal work environment. Without the luxury of naming my own hours, taking off for doctors appointments, no worries for the cost of medications, lab tests, doctor visits, and the like, I get that "reality fix" mentioned earlier. The idea of joining the homeless not far fetched! Thom Collins is now meeting ugly of face of slow, unabashed disease progression. No longer does Thom Collins or David enjoy the life style of setting their own comfortable pace. When you work for a company they do not want to hear about your doctor appointments, medications, lab tests extra sleep, etc. The company wants you at work, at your assigned time and earning your keep. I expected the same thing from our employees! Now fully aware that I also no longer have an income and lack the "ability" to work due to HIV+ progression, I decided to contact Jane. First advice, get in the system as quickly as possible. The Social Security Administration takes from six months to often more than YEARS! Two years is time I originally told I might live with HIV. Suffering "only" from HIV CHRONIC ILLNESS makes the process more difficult to obtain needed benefits. Though I do not have AIDS; I do have HIV+ CHRONIC ILLNESS. The Supreme Court recently ruled that "HIV INFECTION" alone meets every test of a disability and as such those infected are entitled to the same benefits as any other disabled individual. Many disabled people do and can work productively. Many people with HIV INFECTION work and live with no obvious impairments. To qualify for Social Security Disability Benefits an individual must meet their definition of either Partially or Totally Disabled. The disability expected to last an extended period, usually a year or more and or be a terminal condition. One good thing, to qualify for benefits we are not obligated to die! What is HIV+ CHRONIC ILLNESS? The medical definition is the infection itself. PAY ATTENTION! After living with HIV for 16 years and appearing healthy, immune system under continual attack all the while looks can be "very deceiving." My body aches, joint pain like you would not believe, fatigue nausea, sinus, congestion problems and other wonderful, pretty things like my slipped disk that has nothing to do with HIV! If you are HIV+, you may be killing yourself more quickly by not listening to your body. Stress is devastating to the non- infected person. Imagine how increased stress affects our bodies that are infected! HIV infection not only slowly destroys our immune system, the large number of drugs now prescribed to slow HIV progression have varying levels of side affects. The past I have stated on TV and in countless interviews throughout the early 90's that I was an HIV+, long-term non-progressor; and living with it. Many people looked at my outside appearance, in shape and some assumed I was the symbol of "AN HIV POSITIVE LONG TERM SURVIVOR SUPERMODEL MUTANT." Even more hurtful those people that and still do accuse me of GLAMORIZING THE DISEASE! Quickly I found myself defending the insane idea that I thought that HIV or AIDS is glamorous! In time I realized I was not sharing with people how it feels living with HIV. When I was younger and exposed without any medications I just went to the doctor and did what he said. "Keep living and enjoy your life." Not to mention I was also labeled CONTROVERSIAL. But with controversy comes conversation and open discussion, so in some ways I am not compalining it is all part of the master plan from the man upstairs himself. Now I am experiencing first hand the "system" and the politics of AIDS. I have always said please get yourselves educated. Involved with my foundation, involved with HIV, HIV "disease," medications prolonging life, quality of life sustained or improved, never thinking what could happen if I became unable to work, homebound, or deathly ill. Our foundation, OPEN YOUR HEART, helped so many people that I never saw people or clients as victims. Constantly reassuring everyone to be victors and beat The "system" is very hard to deal with. Not long ago during a Native American ceremony in Oklahoma after years of fighting for grants, I received our first grant I was so disgusted with the politics, red tape, and competition of AIDS organizations I said, "You know it has been a hell of a lot easier living with HIV than working within the establishment of non-profits and other businesses providing care for AIDS!" That is when I got my first taste of how hard it is to receive assistance. Most had no insurance, no doctors, no food, no housing, etc. OPEN YOUR HEART did everything it could to get individuals the help they needed. Humbled, I am in the position those wonderful people were. That is why I strongly beleive that when you help others, and give out to the CALL IT KARMA IF YOU LIKE, BUT I KNOW I AM A MUCH BETTER PERSON TODAY AS I HAVE EVOLVED THROUGH SO MANY TRIALS AND TRIBULATIONS. I WOULD NOT CHANGE ONE THING IN MY LIFE'S JOURNEY. My doctor fired me 1 week before Christmas this past year as a patient of 3 years because I could not get along with his staff. His staff is one nurse. This nurse and I did not agree on issues that pertained to David's treatment. My doctor happened to work in the same office as David's doctor. The nurse worked for both of them. When David almost died and I found him in a coma in 1995 from Herpes Meningitis, I DEMANDED the best care. I live in Oklahoma; I know how people think here. HIV and AIDS treatment results, like any other disease, are impacted by the compassion shown and bedside manner. I am a very VOCAL person. I have seen so much pain and suffering, unnecessary. Countless friends died without someone to speak for him or her. Their families abandoned them as they lie in a kennel-like atmosphere, others with AIDS tossed aside to die, no insurance to pay for the medications needed, and denied the freedom to die with dignity. I have said repeatedly, "WE ARE ALL GOING TO DIE, with HIV or AIDS you also carry the stigma of the disease. I do believe a positive attitude is necessary with no negative energy. However, you have to be realistic and take the negative attitudes you might encounter with this disease. Do not turn your back on your feelings. When I say I am HIV positive, I have no time to be negative! My creed is, don't remind me about MY disease, that I am going to die from AIDS, no one walks in my shoes or could be reminded more on a daily basis than me about that possibility. BELIEVE ME - I think of it everyday when I take my pills. Where am I going with this? HIV/AIDS! ARMAGEDDON defined. Using this word not only because it is in the Bible, moreover it describes all that is taking place with HIV, AIDS, my family, and the system. Attitudes about this disease cause a battle between forces of GOOD and EVIL. I did not appreciate the fact that owning my own business actually was prolonging my own life. The opportunity to own a business that gave me theluxury to make my own hours. When I had a sleepless night, night sweats, or just plain fatigue I could depend on income and relax. Most of us do not have that luxury; my hat is off to all of you courageous, strong individuals. GOD BLESS YOU. When I no longer had the income the forces of GOOD AND EVIL became more obvious. The GOOD of this experience is learning about support. Next to GOD, support from family and friends is the key to survival. I am not just talking financial help either. After pounding the pavement looking for work and caring for David, I am painfully aware that my body, the ripe old age of 32, is no longer able to keep pace, work, make timely appointments, etc. Stress has become universal for most of us. I am not looking for poor Thom here, nor am I wallowing in self-pity. I only take Combivir, which is AZT AND 3TC combined. Yeah, I tried the cocktail in 1996 and it is not for me. The cocktail therapy made me so violently ill I did not want to live. I gave my disease to GOD in 1996 and at that point of my survival of HIV. If it is my destiny to die of AIDS, GOD take me now. It is YOUR decision. I refuse to take drugs that have side effects like those I encountered. In addition, it is my feeling, wish and desire with this disease that my quality of life is more important than my quantity. CALL IT A DEATH WISH, BUT IT IS MY BODY, MY LIFE, AND DECISION. Who is to say I may not down the road opt to try them again. But for know I am willing to tough it out. Plus as many people as the cocktail has helped, it has also hurt. I want to wait for more studies and statistics before I EVER put something foreign in my body again. I have that right! I have found a new doctor. This man is incredible. This is another GOOD thing. He and I discussed my issues, took my blood for the typical T-Cell counts and viral load. My lab results, 540 T-cells with a viral load of 1200. I am happy with those numbers, that does not mean I am ready for the SUPERBOWL! The numbers game has always bothered me. I realize they help monitor different aspects of the disease. Never base your existence solely on the numbers. (Lab results) I have always said to others who test positive do not bet your life on numbers. I have seen men and women with T counts in the 10's and live longer then the ones with T counts in the 600s or higher. Though rare it does happen. We are all different! This doctor explained to me that he would suggest therapies to me and if I did not want to take them or if I had suggestions, he would listen. He said we would work together. It is so important to have a doctor that listens to you and respects your feelings. One that does not judge you regarding your treatment decisions. If you viewed as a noncompliant patient, many negatives can arise from that attitude. The documentation in your medical record of something like noncompliance can be the decision marker for benefits under some insurance companies and definitely with Social Security Benefits. David's counts were 980 T cells, and an undetectable viral load. Go figure! Every good doctor I have met has indicated that how the patient feels is much more important than how test report indicates how the patient "should" feel. Obviously these things have great value in making treatment decisions, just try avoid letting a bad lab ruin three or six months of your life! Now, let me elaborate on this. THE EVIL of ARMAGEDDON and HIV/AIDS! This information applies to any serious illness. With less than $100.00 in liquid assets and -0- income David applied for food stamps. In addition, he applied for medical assistance. In Oklahoma, if you do not have dependent children living in your "household" no medical benefits provided through Medicaid. You become eligible for Medicaid only after the Social Security Administration's Disability Determination Department finds you disabled. The good part when that happens is your doctor's office visits, lab, and certain other medical expenses paid retroactively. In some ways it is all somewhat silly since you have to have less than $100.00 in liquid assets to qualify for Food Stamp Assistance or Medicaid, you could not possibly pay for an office visit anyway! If you are seeing a physician is an employee of a large clinic or managed care firm you will be less likely to run into problems in getting into the doctor's office. If are going to try to make an appointment with a single doctor practice, unless you know the physician, they will most likely want cash upfront. Of course, the larger clinics will ask the same thing, payment in advance. Usually the law provides that medically urgent or emergency care has to provide by a hospital when you need if you present yourself to them. However, routine care and prescriptions is not like that. Lab work is another big problem. There are various programs available to help with lab and other types of medical care. Some states and cities have non-profits that will pay for your services at various clinics or doctors offices. Others have set clinics up to treat the medically needy. Believe me when I tell you this, if you do not ask you will not receive. Start looking now! Even if you are HIV positive and looking good and feeling great. TAKE IT FROM ME. An advocate for you in a time of need is of extreme importance. Usually it is best if it is an articulate family member or friend. A good social worker or caseworker with DHS can prove extremely helpful. I have found that the higher up the ladder you get the less friendly the people seem. By friendly, I mean to imply tolerance regarding HIV and AIDS. In addition, most of the people in DHS would not be working there if they truly did not believe in their mission. If you do not have good feeling about the person assigned to your case, try to get a change. Everyone I have spoken with gets different results, even out of the same offices located in the same buildings. This is one place that the "person" you are working with seems to make all the difference. Feel welcome and comfortable. There are programs funded through the Ryan White Foundation and other state and federal programs for medications and care. You do not have be dead broke to qualify for some these prescription programs. Many of the drug companies have compassionate care programs. In most situations, the medications are yours for the asking! Remember this, if you do not have an aggressive advocate working on your side you will not get results. Someone has to know how to complete the forms and where to go for the help. Your advocate has to be the type of personality that will not take "no" for answer. Your advocate is just that and must push on through for you. This as I have repeated before can be your companion, a parent, your best trusting friend, someone from your church, or even your social worker to help guide you through this. PLEASE, FOR YOUR WELL-BEING DO NOT ATTEMPT TO DO GET INTO THE SYSTEM ALONE. When David's income ceased and he no longer had any form of insurance application to the Ryan White Foundation provided almost immediate help for HIV medications. David on a Protease Inhibitor and that funded through another program. If he stops taking the medication or is "noncompliant," he told dropped from the assistance program and most likely would not be able to get it back. Again, documentation and support from your physician regarding your treatment decisions is very important for many reasons. MAKE SURE THAT YOUR DOCTOR WRITES DOWN EVERYTHING IN YOUR FILE FROM NAUSEA, TO FEVER, TO EVEN DIARRHEA. THIS DOCUMENTATION WILL HELP PUSH YOUR CLAIM TO BEING APPROVED. This is a direct quote from the SSA handbook for people with HIV/AIDS. Remember, at all steps in the process, your impairment must be documented. Documentation includes medical records from your doctors, as well as laboratory test results, X-ray reports etc. The HIV infection itself that is, the presence of the virus must be documented as well as any HIV-related manifestations. At all steps in the process it is important that we have evidence of signs, symptoms and laboratory findings associated with HIV infection, as well as information on how well you are able to function day-to- day. The signs and symptoms may include: repeated infections; fevers/night sweats; enlarged lymph nodes, liver or spleen; lower energy or generalized weakness; dyspnea on exertion; persistent cough; depression/anxiety; headache; anorexia; nausea and vomiting; and side effects of medication and/or treatment, as well as how your treatment affects your daily activities. I myself never told my doctor everything and until David got ill and got his paperwork from the many doctors he saw, they for whatever reason did not document some of the symptoms he was having. When you talk to your doctor even if you are doing great on your therapy, but you have a cough or even fatigue at times. HAVE HIM/HER WRITE EVERYTHING YOU TELL HIM DOWN ON YOUR RECORDS. FEEL COMFORTABLE ENOUGH TO BE ABLE TO ASK THAT HE/SHE HAS DOCUMENTED YOUR SYMPTOMS. Your doctor is not your ENEMY he/she is only human. ASK AND YOU SHALL RECEIVE. I have to make myself very clear here. When I say EVIL referring to the system, I mean it is there to help you, but it also slaps your hand when you put it out. You my friends and comrades must be prepared. I have learned the hard way. David and I have been very blessed to have incredible doctors that are well informed and compassionate. However, we have also been a seen some very inhumane treatment. I am not bashing anyone profession when it comes to the disease and survival. I am taking a risk by sharing some of my HORROR STORIES, to hopefully prevent anyone else go through the shock of seeing the worst. Benefits have improved DRAMATICALLY! The help is there, but you HAVE TO BE EDUCATED AND KNOW WHERE TO FIND IT. At this time, I personally am receiving welfare food stamps, and I will be interviewed by phone in 1 week from SSDI. I have been working getting all my paperwork, and medical information together. David's SSDI has come through, but still no check has arrived. Once again red tape. We are both in good spirits, for I know I have a GOD, family, friends, and my church all supporting US through this tough time. Though I will not lie and say that I am also scared. IT IS MY FAITH THAT SEE'S ME THROUGH AND GIVES ME COMFORT. I FEEL I need to share this too. My website is not only about me and my struggles with this disease. It is also a way for me to help empower you, educate, and enlighten you on anything that I have witnessed first hand after living with it now for over 15 years. I do not have all the answers or am I a doctor pertaining to all of the issues at hand as you can see from this letter. But, I have done my research along side David and we want to share this with you by including some of the important key hyperlinks to accessing information directly from the SOCIAL SECURITY ADMINISTRATION. This next portion dealing with the hyperlinks is a gift to you from David himself who I love so much and he felt it necessary to get this information to you directly from my website. He like myself want to help all of you any way we can with education. Here are the social security links 1. This is the Social Security Home Page: 2. List of Social Security Publications: 3. SSI Explained in this 14 page PDF: THE FOLLOWING DOCUMENTS ARE "MUST READ" INFORMATION FOR EVERYONE THAT HAS WORKED AND EARNED SOCIAL SECURITY CREDITS AND IS NOW OR KNOWS SOMEONE THAT IS HIV+ 4. Guide that specifically explains Social Security Administration's new regulations for people with HIV+ status as well as an AID's diagnosis. Other Topics in the following guide include: "Although thousands of people with HIV infection are receiving Social Security or SSI disability benefits, we believe there may be others who might be eligible for these benefits. Social Security is committed to helping all men, women and children with HIV infection learn more about the disability programs we administer. And if you qualify for benefits, we are just as committed to ensuring that you receive them as soon as possible. " A Guide To Social Security & SSI Disability Benefits for People With HIV Infection One very important thing I need to also share with you reading this. The thousands of e-mails from around the world tell me that I am an inspiration to you. Well, my friends you are all my support and inspiration to me. If I did not have this site to connect with so many wonderful people from around the world with stories of their own, as well as your supportive letters. These letters not only keep me going but it empowers me to keep up my own personal struggles. We are all helping each other and connecting with our stories to all come together as ONE. THERE IS NOTHING MORE POWERFUL THAN THAT. WE ARE ALL IN THIS TOGETHER AND IT TAKES MORE THAN 1 PERSON TO FIGHT A WAR. I have said this to some of you, I may have helped you in some way from my site. You have helped me by educating, supporting, and encouraging me to continue. HOWEVER, my story is like so many of you out there. I am simply just one of GOD'S many messengers to bring this to darkness of the disease into the light. So go my friends in light, peace, and most of all happiness. Keep positive! GET EDUCATED! The next installment for that I will pour out to you is the Y2K bug and SSDI? JUST KIDDING. THOM |