I was recently contacted by a man about my own age - and yes they are still out there. He has just passed the first anniversary of his positive HIV diagnosis. He was asking me if there were support groups for the newly infected these days. In thinking about this - I am aware of a few 'support' groups that are tailored not to any specific subset of the infected community but to those infected in general. These are few and far between to the best of my knowledge. I was recently involved in a general support group and found it useful to the more recent infectees to be able to ask the rest of us what they had to look forward to - what our experiences were regarding meds, symptoms, doctors, etc. I would steer any newly infected persons to one of those groups if they can find them. In a subsequent entry I will include a list of LA area agencies that still offer those groups, and welcome any readers to offer their wisdom as well.
The one area that is getting alot of press is the crystal meth - HIV connection. There are more opportunities to enter one of those groups around these days.
Tuesday, August 14, 2007
Sunday, August 12, 2007
Lost but not Forgotten - where is Carl Bean?
Los Angeles has the dishonor of being the largest city (by far) that no longer has a skilled nursing facility or hospice specifically for the HIV community. The various agencies that failed to support such a facility should be ashamed of themselves. Having been a repeat client of the last such facility, The Carl Bean House, a facility of the AIDS Healthcare Foundation (AHF), I am one among many who morn its lost, as there is no longer a suitable facility for people being discharged from the hospital who still need nursing care that is sensitive to HIV issues. Having also been to several of the facilities currently available can only say that any hospital sending patients to these facilities should be disciplined for abusing their patients. The remaining facilities are equipped with careless nurses, inadequate hygiene and nutrition facilities, and tend to be abusive to patients who are ambulatory enough to speak up for themselves. When I told these things to the aftercare person at a prestigious hospital, she remarked that she had no idea as they had never even visited these facilities. How do you refer someone to a facility about which you know nothing with a clear conscience. My observations are shared by other patients who have shared my experience as well as the ambulance drivers that service those facilities.
My physician and several others I have had the opportunity to poll all share the opinion that closing Carl Bean was a grave mistake as they have nowhere to send their patients. Funding from the county board was cut off because of the political unpopularity of AHF's executive director. AHF had the opportunity to use some of their other funds, or to actively seek other funding, but they chose not to. The county OAPP also had an opertunity to seek another agency to administer the Carl Bean facility - but they chose not to. I understand the need for our support of aid to Africa as their situation is dire, but I find it unconscionable that we send funding anywhere before our local population is cared for. My blood boils when I hear any of the financing news about the Iraq war. Just a fraction of that money would make all the difference in the world to the AIDS community.
The Carl Bean House sits empty - unused - waiting for someone to step up to the plate and take the reins there. Someone could be creative and form a coalition of agencies to step up to the plate too. I offer an open invitation to anyone interested to join me in the pursuit of reactivating this sorely needed facility.
My physician and several others I have had the opportunity to poll all share the opinion that closing Carl Bean was a grave mistake as they have nowhere to send their patients. Funding from the county board was cut off because of the political unpopularity of AHF's executive director. AHF had the opportunity to use some of their other funds, or to actively seek other funding, but they chose not to. The county OAPP also had an opertunity to seek another agency to administer the Carl Bean facility - but they chose not to. I understand the need for our support of aid to Africa as their situation is dire, but I find it unconscionable that we send funding anywhere before our local population is cared for. My blood boils when I hear any of the financing news about the Iraq war. Just a fraction of that money would make all the difference in the world to the AIDS community.
The Carl Bean House sits empty - unused - waiting for someone to step up to the plate and take the reins there. Someone could be creative and form a coalition of agencies to step up to the plate too. I offer an open invitation to anyone interested to join me in the pursuit of reactivating this sorely needed facility.
Sunday, August 5, 2007
HIV Stops with me James Chud
There is a website that needs mentioning - HIV Stops With Me.com (no spaces) These folks also publish personal stories like my own, along with informational articles, polls, and information about resources for us HIVers. I have recently agreed to be a correspondent for this organization, even though there is an overlap in purpose with my own. I am not in this for the ego gratification, only as a budding activist in a community dear to my heart. I am motivated by a need for recognition of a problem that is being totally over looked - the needs of the silently disabled. Long term HIV survivors might not have opportunistic infections plaguing them at present, yet they remain unable to work routinely because of the litany of symptoms other than infection that are part and parcel of HIV disease. Society's definition of disabled needs amending to be fair to this community. I welcome any and all to throw their two cents in.
The first paragraph was originally posted on 8/05/07 - I am adding on now because I see how incomplete it was.
There are indeed two types of 'silently disabled' people. The first, as I mentioned above, suffer from any one or more of the 'co-morbidities' normally associated with aging in America. Heart disease, diabetes, COPD, arthritis, alzheimers, etc. The interesting thing that research now supports is that men over 50 with HIV infection experience twice as many of these issues as those who do not have HIV. Long Term Survivors also deal with debilitating fatigue that is undeniable. For me it has been shocking. There are good days and bad days, but when it hits, I just can't muster the energy to get my butt out of bed. It is so severe, that I keep a large container next to my bed in which I can urinate when I am too tired to even make it the three steps to my bathroom. I remember that when it first started, I could not figure out what had worn me out so much - the problem was that there wasn't anything to pin my fatigue on other than HIV.
I have been an active person all of my life, so the energy thing hit me extra hard. I can only offer this that if it happens to you, trying to figure it out will prove very frustrating, Just accept it if you can and learn to work around it.
The first paragraph was originally posted on 8/05/07 - I am adding on now because I see how incomplete it was.
There are indeed two types of 'silently disabled' people. The first, as I mentioned above, suffer from any one or more of the 'co-morbidities' normally associated with aging in America. Heart disease, diabetes, COPD, arthritis, alzheimers, etc. The interesting thing that research now supports is that men over 50 with HIV infection experience twice as many of these issues as those who do not have HIV. Long Term Survivors also deal with debilitating fatigue that is undeniable. For me it has been shocking. There are good days and bad days, but when it hits, I just can't muster the energy to get my butt out of bed. It is so severe, that I keep a large container next to my bed in which I can urinate when I am too tired to even make it the three steps to my bathroom. I remember that when it first started, I could not figure out what had worn me out so much - the problem was that there wasn't anything to pin my fatigue on other than HIV.
I have been an active person all of my life, so the energy thing hit me extra hard. I can only offer this that if it happens to you, trying to figure it out will prove very frustrating, Just accept it if you can and learn to work around it.
Friday, August 3, 2007
Why I am going to be a nurse
Having spent soooo much time in hospitals, I have had the opportunity to experience many vareties of nursing. There are those who take pride in their work, treating patients with compassion and care, beheiving as true professionals. They are in the minority I am sorry to say. At the risk of appearing politically incorrect, I have to mention the beheivior of the majority of individuals in a particular cultural group that have migrated to the U. S. because nursing in their country pays only $300.00 a week. They picked nursing as their work because of the money, rather than a desire to help people. Unfortunately, their approach toward nursing is to take control of their patients, treating us patients as if we were difficult children that needed to be controled and disciplined. They tend to put their own needs, like shopping and bill paying on the internet way ahead of the needs of their patients. If they are confronted their first response is to give orders like "GO TO YOU ROOM' as if one were a bad child. They also rarely admiit to their actions and use each other to support their stories. There are a very rare exceptions to this situation, but not many. What they can't control, they discipline. Having experienced this time and time again and having spoken to others including nurses with the same experience, I feel secure in my description here.
Their treatment is infuriating. After years of doing nothing but tuffing it out, I now go directly to nursing management and have my nursing assingment changed. Unfortunately many others just sit and take their lumps. I hope my approach to nursing is just the opposite. I am doing it because I want a purpose to my life, and helping those who face the challenges I have faced only seems fair.
The best nursing care I received was at NIH in Bethesda and the various university hospitals to whom I owe my very survival. I have never felt as safe as when I was in their care. The cultural problem that I mentioned is like the proverbial elephant in the living room that few people feel comfortable mentioning for fear of reprisal. Heck, I have nothing to lose here. I only hope that some change is made even if the change is by baby steps. Obviously, hospital patients are in a uniquely vulnerable and helpless condition. They seek and deserve our help.
Their treatment is infuriating. After years of doing nothing but tuffing it out, I now go directly to nursing management and have my nursing assingment changed. Unfortunately many others just sit and take their lumps. I hope my approach to nursing is just the opposite. I am doing it because I want a purpose to my life, and helping those who face the challenges I have faced only seems fair.
The best nursing care I received was at NIH in Bethesda and the various university hospitals to whom I owe my very survival. I have never felt as safe as when I was in their care. The cultural problem that I mentioned is like the proverbial elephant in the living room that few people feel comfortable mentioning for fear of reprisal. Heck, I have nothing to lose here. I only hope that some change is made even if the change is by baby steps. Obviously, hospital patients are in a uniquely vulnerable and helpless condition. They seek and deserve our help.
Wednesday, August 1, 2007
How you know you have been in hospital too long
In case I didn't mention it yet, I started this blog from my bedside here at Cedars Sinai Medical Center in beautiful Beverly Hills, California. I have now been here for 2 weeks shy of 4 months. Yes, FOUR MONTHS. Trust me - I have been here too long.
Some background is appropriate. In 1987 I entered a drug study at the National Institutes of Health Bethesda Maryland. I thought msyself quite fortunate to have been selected for one of the studies as admission was extremely competitive and studies were about the only game in town other than high dose AZT therapy. My study was for a combination therapy involving high dose AZT along with high dose DDC in combination. The side effects experienced by all of the study participants were daunting, but endurable - and of short (3-5 day) duration. I, however, had a unique reaction as all of my joints became swollen up and frozen solid. I was paralyzed. About two weeks after the cessation of the medications my body unfroze and I was released from the study. Unfortunately I was left with a legacy of cartilage decay and degeneration necessitating surgeries to repair most of my joints and fusion of 20 levels of my spine along wihe the insertion of supportive hardware. I am now at the tail end of the spine repairs and am dealing with the resolution of a stubborn post-op infection. Suffice it to say that enduring the control issues of certain nurses and the carelessness of others has been a challenge. Thank god for those few gems who treat their occupation as a profession - they really are life-savers. They believe that care rather than control is the reason they are here. I feel no animosity towards the study folks at NIH for my situation - they were doing the best that they could at the time. I trust that my experience saved many others from experiencing my toxicity reaction - and that was the main. reason I was there.
Some background is appropriate. In 1987 I entered a drug study at the National Institutes of Health Bethesda Maryland. I thought msyself quite fortunate to have been selected for one of the studies as admission was extremely competitive and studies were about the only game in town other than high dose AZT therapy. My study was for a combination therapy involving high dose AZT along with high dose DDC in combination. The side effects experienced by all of the study participants were daunting, but endurable - and of short (3-5 day) duration. I, however, had a unique reaction as all of my joints became swollen up and frozen solid. I was paralyzed. About two weeks after the cessation of the medications my body unfroze and I was released from the study. Unfortunately I was left with a legacy of cartilage decay and degeneration necessitating surgeries to repair most of my joints and fusion of 20 levels of my spine along wihe the insertion of supportive hardware. I am now at the tail end of the spine repairs and am dealing with the resolution of a stubborn post-op infection. Suffice it to say that enduring the control issues of certain nurses and the carelessness of others has been a challenge. Thank god for those few gems who treat their occupation as a profession - they really are life-savers. They believe that care rather than control is the reason they are here. I feel no animosity towards the study folks at NIH for my situation - they were doing the best that they could at the time. I trust that my experience saved many others from experiencing my toxicity reaction - and that was the main. reason I was there.
Adding your story to my blog
I have been contacted by several folks who wish to tell their stories here - and here is the simplest way. At the bottom of each of my posts is the word 'comments'. Simply click on this word - which should highlight once you move your cursor over it, and you will be taken to a text input are that is pretty self explanatory. Make sure to fill in all areas and I believe you will be given the option to save your comments or publish you comments - make sure to do this before leaving the area and your story will be posted. If there are any other questions. I can be contacted at jmchud@gmail.com
Tuesday, July 31, 2007
Something I should mention
While re-reading the main page of my blog- as I am new at this - I mentioned the collapse of my spine - as a clarification I offer - what happened is that all of my disks collapsed, and I have had my entire spine fused. I am quite up and about - and very mobile. I still visit the gym regularly and exercise avidly. To look at me one would never guess the condition of my back and I am eternally greatful for the doctors and surgeons who have helped me heal over the last couple of years. I couldn't have done it without them. I am blessed to have my faculties as alot of the other folks of whom I speak in this blog are not as fortunate.
Sunday, July 29, 2007
THE MENANING OF LONG TERM SURVIVAL
am a member of an evergrowing community of long term survivors of HIV/AIDS. Persevering through the health challenges that have put me in the hospital for three months at a clip on several occasions over the last seven years has been an amazing learning experience. I have dealt with a fungal infection of my sinuses and braincase, total collapse of my spine, and numerous ancillary infections and managed to thrive inspite of what I was later informed were amazing odds. I have very little family around for support, but have had the privelege of knowing some truely loving people along the way that made the situation bearable. I am puzzled and troubled by the disappearing resources available for us long termers - of which I know more than a few. I am making it my job to advocate for the ever growing population of long term AIDS survivors who are learning the hard way that contrary to what the media publishes, the AIDS epidemic is not diminishing in America, and long term survival is laden with debilitating symptoms about which nobody talks. I look forward to tell their stories as well as my own in hopes of waking up society and getting us the services we so sorely need, but have had taken away.
I am soliciting the stories of other people who the system has abandoned. You see, after 20 or 25 years, HIV/AIDS takes its toll. Even though you might have a high t-cell count, and undetectable viral load, you still develop symptoms like debilitating fatigue, incessant diarrhea, crippling neuropathies, excruciating shingles, muscle aches and wasting, weakness, to name a few. These symptoms, while debilitating to a point of making full time employment impossible, do not classify one as disabled according to the government and private insurers, so support benefits that you may have paid for are unavailable. Life can become difficult to afford. Part time employment sufficient to support one's basic life needs is virtually non-existent. Frequent visits to the various doctors needed to treat some of these problems tend to run one's life. Medicine becomes insanely expensive. My typical monthly cost just for medications is over 10 thousand dollars. And guidance or case management is getting harder and harder to find.
My goal is to gather enough stories here to get the attention of politicians and anyone willing to lend a hand. I am fortunate to have just enough disability income to get by at present, at least long enough to complete nursing school and go back to work. I have spent a total of 4 out of the last 7 years either in a hospital or nursing facaility. I pray that my health holds out now but there are no guarantees.
I am soliciting the stories of other people who the system has abandoned. You see, after 20 or 25 years, HIV/AIDS takes its toll. Even though you might have a high t-cell count, and undetectable viral load, you still develop symptoms like debilitating fatigue, incessant diarrhea, crippling neuropathies, excruciating shingles, muscle aches and wasting, weakness, to name a few. These symptoms, while debilitating to a point of making full time employment impossible, do not classify one as disabled according to the government and private insurers, so support benefits that you may have paid for are unavailable. Life can become difficult to afford. Part time employment sufficient to support one's basic life needs is virtually non-existent. Frequent visits to the various doctors needed to treat some of these problems tend to run one's life. Medicine becomes insanely expensive. My typical monthly cost just for medications is over 10 thousand dollars. And guidance or case management is getting harder and harder to find.
My goal is to gather enough stories here to get the attention of politicians and anyone willing to lend a hand. I am fortunate to have just enough disability income to get by at present, at least long enough to complete nursing school and go back to work. I have spent a total of 4 out of the last 7 years either in a hospital or nursing facaility. I pray that my health holds out now but there are no guarantees.
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