HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck
They May Not Be Your Best Friends ... but Doctors Need Love Too! Part Two
July 10, 2012
People have to find the happy medium between passive respect for the doctor and yelling at him or her because you don't hear what you want to hear. We also all need to make adjustments in our approaches and learn to use the wealth of new information available in such a way that a consultation with a doctor becomes a constructive and rewarding process for both sides.
They May Not Be Your Best Friends ... but Doctors Need Love Too! Part One
July 3, 2012
I often find myself having conflicting feelings about doctors. I've got several specialists, who take care of various complaints both pre and post-HIV and a home doctor who deals with every-day ailments and tries to keep an eye on the big picture too. Sometimes I'm enormously grateful that I live in a country where that's possible and where I don't have to pay extra for any basic medical services. Other times, I seethe with frustration at mistakes, or wrong diagnoses, or misguided treatments.
Guinea Pigs, Crash Test Dummies and HIV/Neuropathy Treatment
June 14, 2012
It's hard to estimate the impact of the latest news to hit the neuropathy forums (what! we can't have trending stories too?) but anyone who has recently Googled the words HIV and Neuropathy has been confronted by dozens of links referring to the news that Lyrica (or pregabalin) is pretty much useless for treating neuropathic pain. It's not often that the internet neuropathy community (normally a mild-mannered, stoical, too-busy-dealing-with-symptoms folk) spreads a story so quickly across their websites, blogs, forums and chat rooms and when it happens, it's for a good reason!
Viral Politics, or How They'll Spin You Into Sin!
May 31, 2012
Poorer regions of the world have never been given so much money and support to combat the spread of HIV as during the last ten years, yet despite massive financial back-up for health initiatives, HIV prevalence and rates of infection are increasing in those areas and not shrinking! As a result, while the epidemic is weaker in terms of global statistics; it is expanding and intensifying in specific areas.
She Worked Hard for the Money: Donna Summer, 1948 - 2012
May 17, 2012
For those who partied in the '70s and '80s, the name Donna Summer evokes nostalgic memories of hot discos throbbing to the heat generated by 'I Feel Love', 'Love to Love You Baby', 'Hot Stuff' and Last Dance', to name but a few. This woman put sex and disco together and instigated a musical genre, which belonged to gays and was only later adopted by the world at large. She was the musical 'love-child' of Georgio Moroder and Pete Bellotte and was the voice that fronted a new techno-synth and electronic sound that was distinctly European in flavour and first broke there too in the early '70s. The icing on the 'Macarthur Park' cake went into meltdown however, when in 1983, La Summer opened her newly converted Christian mouth and made some remarks, which instantly alienated the gay community and thus her strongest fan base. Whether the things she said were misquoted or not, suspicions were aroused which refuse to go away.
"Dear Dave ...": The Virus Writes Back!
April 29, 2012
Are you surprised? Seriously! How can you be surprised? You knew all about me before we met and let me remind you ... you knew what to expect! How many friends had I killed, with you watching me do it and yet still determined to get into bed with me eventually? Oh please, don't tell me you never meant for this to happen! You pretty much knew how to avoid it, or am I wrong?
Crimes and Generations, or How We Throw Our Elders Out With the Bathwater
April 19, 2012
Societies across the world will be facing many challenging situations over the coming years but one of the greatest may well turn out to be one of the most shameful; the hidden and unrecognized, wide scale abuse of our elderly. What does it mean now and what will it mean in the future for many people in the HIV generations that have been saved from an early death but may be condemned to a miserable last few decades?
Can I Get A Witness! Authentic Voices Tell the Story of Neuropathy
April 11, 2012
In 1931, the French medical missionary Dr. Albert Schweitzer wrote: "Pain is a more terrible lord of mankind than even death itself."
Attack of the Killer Couches, or Why People With HIV and Neuropathy Need to Get Off Our Backsides! Part Two
March 30, 2012
Okay, all that information about exercise provided in Part One probably leaves you feeling somewhat frustrated if your movement is already limited by pain and disability. So what can we do for ourselves? We've been pushed reluctantly into our chairs by neuropathy and have learned that activity can be painful but there must surely be things we can do. Unfortunately, immobility is a huge problem for neuropathy patients. It can shrink your muscles even further and cause them to lose flexibility. Your metabolism will decrease, which means again, less energy and more fat gain.
Attack of the Killer Couches, or Why People With HIV and Neuropathy Need to Get Off Our Backsides! Part One
March 29, 2012
Nobody with neuropathic pain, or tingling, or numbness wants to hear it. Neither do those people with HIV who are exhausted from the pressures, both physical and psychological, of living with HIV and its medications. These are people who on some days are so tired they can't move one foot in front of another and they just don't want to be told to go forth and exercise. Yet they have to; we must! It's a question of how much longer we want to live.
HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck
English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.
Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.
However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.
I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.
Subscribe to Dave R.'s Blog:
March 3, 2014 - The Bug Chaser's Tale: An Interview -- A Blog Entry by Dave R.
January 22, 2014 - Please Don't Leave Me Because I Need You: An HIV Take on Separation Anxiety -- A Blog Entry by Dave R.
January 14, 2014 - Please Don't Ask Me to Say I Love You: An HIV Take on Commitment Phobia -- A Blog Entry by Dave R.
December 6, 2013 - Nelson Mandela: Great Is Too Small a Word -- A Blog Entry by Dave R.
December 1, 2013 - The Loneliness of the Long-Distance HIVer
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