Difficulty Living With HIV And Neuropathy A Personal Account

Today's post from healthygaylifestyles.com (see link below) is a powerful personal account of living with HIV and AIDS (including severe neuropathy) in 2013. Not everybody sails through the rest of their lives on one HIV pill per day and very many people still have problems from side effects, or damage from earlier medication regimes, or from secondary conditions brought about by the virus itself. This account is a reminder that even with neuropathy in your life, you may still count yourself lucky that things are not a whole lot worse. Well worth a read.

Anatomy of An Illness (Part 1)
by Roger Goodman M.Div. Published on August 1st, 2013 | by Healthy Gay Lifestyles

I have not felt at all well for the last three weeks. I am running a low-grade fever of 99.5-100.2. My normal temperature is 97.1, so going up to 99.5 – 100.2 is , for me, running a fever. I am sweating all over my body with a permanent sheen of light sweat covering every inch of me. Along with the sweating I also have chills. I am also itching like crazy all over my body but the worst part is on the top of my hands and around the tops of my ears on my head. I just feel lousy and I don’t know what is going on with my body so I am a little freaked out. I always get a little freaked out when I begin to get sick, because I don’t know what it is going to lead to. The last time I felt sick it ended up to be severe sepsis that required a stay in the ICU. I don’t want that to happen again. I just wish something would break, either get sicker and need to be hospitalized or get completely well at home and not have the low-grade fever, headache, weakness in my legs, severe body pain, and itchiness that is part of what’s bothering me. I am so depressed and I don’t know if it is because I feel sick and cannot sleep during the night, or if I cannot sleep during the night, because I am depressed. I don’t know which is the catalyst for which.

Living with AIDS is a terrible thing. The consensus is that AIDS is over, that the epidemic is a thing of the past, but I and my friends who live with the disease know better. We get very sick from odd infections that always seem to need hospitalization. This never happened before I was diagnosed from my first opportunistic infection in 1995-96 when I had Herpes Simplex Virus Encephalopathy and went into a ten-day coma and died, but from which I came back to life. I slipped into the coma on Christmas Eve, 1995 and woke up ten days later in January 1996. I came back from death because I had much transformational work to do with the Queer community. My book and my film are important parts of that work. I completely missed Christmas and New Year’s Eve that year (my chosen family and I celebrated Christmas after I woke up from death and was back to a regular room in Unit 371 at Advocate Illinois Masonic Medical Center, the incredible AIDS Unit during the 80′s and 90′s which became my second address for seven years). For those years I fought for my life against deadly infections, including Kaposi’s Sarcoma for which I received radiation treatments and chemotherapy for three years. That all ended in 2002, but since then I have been hospitalized probably twelve times with various pneumonias, bouts of severe bronchitis, and COPD as well as general, critical bacterial infections. These come and go, but there is the ever-present Parkinsonism that fells me on a daily basis. My neurologist says I have it because of the trauma to my brain from the Encephalopathy. So, I take medication and use marijuana medicinally to stop the tremors, the rigidity in my joints, and to improve my cognition, but I still have a hard time using eating utensils and writing. My handwriting is illegible, so I type everything I have to write and when that is impossible I use Dragon for Mac, a voice recognition software, to speak what I have to write.

The pain in my feet from the peripheral neuropathy is excruciating today. The surfaces of my lower legs and feet are completely numb to the touch and simultaneously feeling that I have 1000 wasps stinging my feet all at the same time. It is like having searing hot coals sewn into my feet and people don’t understand why I have such a hard time walking. I don’t yet need to use a walker, but I cannot walk without my cane and CROW Walker for my Charcot Foot (Google this if you like-it is a most amazing device) and it allows me to walk. Without it I cannot go out. I’m so tired of hearing that AIDS is over now that the miraculous medications are available. That’s just a lie. It’s a way for people to feel safe in the midst of this scourge which still hangs over the face of the earth. Plus, the side effects (the effects, really) of the HIV meds are truly terrible. The medications are highly toxic. They are a form of chemotherapy, except they are taken orally rather than being infused intravenously. I’m in recovery from drug addiction and have been clean from drugs for the last 8 1/2 years since February 5, 2005, but now that medical marijuana is going to be legal in Illinois I don’t have to worry about getting busted. Todd, my loving and brilliant physician, can prescribe it for me. I don’t believe that using medical marijuana in any way affects my recovery program nor does it change my clean date. I will use marijuana purely as a pain reliever of physical body pain and to loosen my joints, not emotional pain or spiritual pain and certainly not recreationally, just the pain from the neuropathy and the Parkinsonism and the general overall pain in my body from having lived with this virus for 31 years.

My neurologist says that my loss of short-term memory, me acting out my dreams, the nightmares that are filled with darkness and terror when I can manage to sleep at night, carrying on conversations with phantom people just as I am falling asleep, as well as the loss of balance, confusion, the inability to hold a fork to balance my food and bring it to my mouth (hence I use a spoon for most things I eat), my depression, the rigidity and pain in my joints especially in my knees which is an insidious source of pain, my difficulty balancing on my feet, the weakness in my legs, the incessant fatigue and consequent incessant sleeping, and the terrible body pain are all consequences of the Parkinsonism. Perhaps using marijuana will alleviate some of the symptoms. It is powerful medicine. My brother is a licensed marijuana grower in New Mexico and he says that he has seen miraculous recovery from various illnesses in his patients including some skin cancers when applied as a cannabis oil.

I’m taking a break now. I’m tired and need to take a nap.

After a break in writing this, I am back. The break took longer than expected. I have to say that my wish above to either get sicker and need to be hospitalized in order to heal or get better at home came true, except it was the former wish that came true. I was going to take a nap, but instead ended up in the emergency room of the hospital I use. I was just discharged today having been admitted for an extremely elevated white count in my blood indicating an infection somewhere in my body (yet another one!!) and that has been what has been freaking me out this past three weeks . I saw Todd, my PCP (Primary Care Physician) in the hospital today and he discharged me because my white count issue has been resolved with IV Levoquin and he was afraid of super infection just from being in the hospital. I have to now take it orally for the next seven days. I was discharged this evening. I am so glad to be home with my dear Jerry and our children (our cats Murfee and Gizmo). Except for the intense fatigue, I feel so much better. The body pain from the infection (not counting the pain from the Parkinsonism and the peripheral neuropathy) is much alleviated and I can think clearly again.

This has been an extremely difficult year regarding my health: two pneumonia’s, two bouts of sepsis the first of which required a stay in the ICU for four days because I was so close to death and the second coming within twenty-four hours of being discharged from the first infection which was completely cured, removal of a ureteral stone which required two surgeries, excision of a squamous cell carcinoma on my scalp, a TURP (prostate surgery), and now this generalized infection. The TURP was not completely successful, however. I still have bladder pain when I urinate. I am seeing my urologist on Monday and I will see what he has to say. I hope I don’t have to go through another TURP. The consequences of the first TURP are not as devastating as I had anticipated. I can still have an orgasm (what a relief!), although it is dry. The sensations are there and the sex is great with Jerry, but there is no ejaculation. My entire body goes into intense orgasmic convulsions and my mind goes somewhere else completely. The depth of the spiritual experience with Jerry is complete but there is no ejaculation. Even without that, I experience “le petit mort” powerfully. Interesting, very.

Even with all these things that I have to deal with on a daily basis, my life is wonderful, creative, and productive. I am blessed to be alive so that I can carry on my work of writing and film making and, of course, to keep experiencing and living in my relationship with Jerry. I hope I have at least another twenty years of life and that Jerry does as well. We have much life to live fully and much loving to do. I am so grateful for my life. I live with my mortality every day, so each day is precious to me and Jerry is the center. Jerry is my rock. I am more than content with life. I have an incredible serenity and peace even with all the physical/psychological challenges I face on a daily basis. This is from my 12-Step recovery work. I am blessed, indeed.

___________________________________________

Roger Goodman, M. Mus., M. Div. attended Oberlin College during the tumultuous 1960s during the Civil Rights Movement and protests over the War in Vietnam. He was present at the watershed Stonewall Rebellion in NYC in June, 1969. He had an international career as a concert harpsichordist, teacher, and recording artist. He was on the faculty of The New School for Social Research in New York City, the American Conservatory of Music in Chicago, and the School of Music at DePaul University as Director of the Baroque Program, a post he held for 23 years. In 2009, Roger left the world of music to become a filmmaker. He is Executive Director of his 501(c)(3) corporation Tribal Elder Productions, NFP which he formed in 2010 and is the screen writer, and director for his documentary film “From the Ashes Risen” for which he is currently seeking funding through grants and the private sector. His new book is entitled, Thoughts of a Tribal Elder: One Queerman’s Journey From the Ashes Risen. Roger has been HIV+ since the early 1980′s and was diagnosed with full-blown AIDS in 1995 when he died during a lengthy coma, but, miraculously. he came back from death. He says the reason he came back was because he had important transformational work to do in the world for Queer people everywhere. His speaking and workshops on college and university campuses, his teaching/performing, his film, and his book are the fruits of that extraordinary journey with the Death Crone. A sex and drug addict in 12-Step Recovery, he has been clean from all drugs and sexual acting out for 8 years, since 2005. He is thoroughly grateful to his Higher Power that his life was given back to him so that he could do the work he has been given to do with enthusiasm, humility, and unending joy. Websites: www.queerwitness.com and www.tribalelderproductions.org.

http://healthygaylifestyles.com/anatomy-of-an-illness-part-1/

Living with Peripheral Neuropathy Part 1

Part One of a two part, American TV programme about living with neuropathy (Part Two tomorrow).
It talks mainly about neuropathy as a result of diabetes and every few minutes you feel like saying, 'What about us?' but that said both videos are interesting because they look into the basics of neuropathy presented by both doctors and patients. It does us no harm whatsoever to learn how diabetics are affected by neuropathy, if only to understand the differences with HIV-related neuropathy. You also get to hear personal experiences of people affected by different forms of neuropathy and compare their situations to your own.

It was posted on a neuropathy support network blog on July 5th, 2011 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS (see full link below)and this is what he said:

PBS – WMHT – HEALTH LINK, ALBANY, NEW YORK produced a video “Living with Peripheral Neuropathy”. This is the best video I have ever seen on Peripheral Neuropathy as Dr. James Wymer, MD, PhD and Neurologist from Albany Medical College shares insights into the many issues surrounding Peripheral Neuropathy. He is joined by Dr. Robert Busch, MD, Endocrinologist and a panel of Peripheral Neuropathy patients from the local Albany Support Group and by Peripheral Neuropathy patients who called into the panel discussion. What makes this video of great value is the greater depth of insight and the seriousness given to the epidemic of Peripheral Neuropathy as a major health issue. Discussed are the facts, types, causes, symptoms of Peripheral Neuropathy beyond diabetes while addressing this major cause. The critical point of the video is the FACT that the patient MUST seek to find the cause of their Peripheral Neuropathy, as this is the only way of addressing the disease beyond treatment of symptoms and/or pain to prevent severe disability. A must see at any Neuropathy Support Group meeting.

Watch the full episode. See more Health Link.

http://neuropathysupportnetwork.org/blog/category/peripheral-neuropathy/

Vitamins B12 And D3 For People Living With Neuropathy And HIV

Today's post from nybc.wordpress.com (see link below) looks at Vitamins B12 and D3; two of the key vitamins people should ensure remain at healthy levels, when living with the side effects of HIV including neuropathy. Of course, the New York Buyers Club is a very well known supplier of supplements and vitamins and this blog makes a point of not advertising for commercial sites but this article does give some very good medical information based on the findings of the Canadian, Catie HIV organisation and reliably informs you of the reason why you might need supplementation - after that the decision is yours as to where you buy what you need. Personally, I would always check with your doctor first - a simple blood test will tell you if you're deficient in any vitamin or mineral areas and it's possible you can get any supplements free on prescription after that - if not, perfectly good supplements can be bought cheaply almost everywhere these days. There are also various other articles about B and D vitamins to be found in the list to the right of this blog and they may help further with your decision making.

Why Vitamins B12 and D3 Are Especially Important to People with HIV 
Posted by jarebe December 8, 2013 New York Buyers’ Club – The Blog
A nonprofit source for dietary supplements
 
Our friends at the Canadian AIDS Treatment Information Exchange (CATIE), a Canadian government-supported education and prevention organization, recently published an excellent guide to managing HIV medication side effects. This online guide covers the territory from body shape changes, to gastrointestinal disorders, to neurological effects, to emotional wellness, to fatigue, to sexual difficulties.

The Appendix to this guide focuses on two vitamins, both of which have been highlighted as especially important for people with HIV: B12 and D3. Deficiency of these two vitamins appears to be common among people with HIV, and supplementing to correct the deficiency can bring about major improvements in health. So it’s definitely worthwhile to check your B12 and D3 status, and, if you’re deficient, find a good supplementation strategy. Note that NYBC stocks both of these inexpensive vitamins: the methylcobalamin form of Vitamin B12 recommended below; and several strengths of Vitamin D3, including the commonly recommended D3 – 2500IU format.

Below are the CATIE recommendations:

Vitamin B12

A number of studies have shown that vitamin B12 is deficient in a large percentage of people with HIV, and the deficiency can begin early in the disease. Vitamin B12 deficiency can result in neurologic symptoms — for example, numbness, tingling and loss of dexterity — and the deterioration of mental function, which causes symptoms such as foggy thinking, memory loss, confusion, disorientation, depression, irrational anger and paranoia. Deficiency can also cause anemia. (See the section on Fatigue for more discussion of anemia.) It has also been linked to lower production of the hormone melatonin, which can affect the wake-sleep cycle.

If you have developed any of the emotional or mental symptoms mentioned above, especially combined with chronic fatigue, vitamin B12 deficiency could be contributing. This is especially true if you also have other symptoms that this deficiency can cause, including neuropathy, weakness and difficulty with balance or walking. On the other hand, these symptoms can also be associated with HIV itself, with hypothyroidism or advanced cases of syphilis called neurosyphilis. A thorough workup for all potential diagnoses is key to determining the cause.

Research at Yale University has shown that the standard blood test for vitamin B12 deficiency is not always reliable. Some people who appear to have “normal” blood levels are actually deficient, and could potentially benefit from supplementation.

The dose of vitamin B12 required varies from individual to individual and working with a doctor or naturopathic doctor to determine the correct dose is recommended. Vitamin B12 can be taken orally, by nasal gel or by injection. The best way to take it depends on the underlying cause of the deficiency, so it’s important to be properly assessed before starting supplements. For oral therapy, a typical recommendation is 1,000 to 2,000 mcg daily.

One way to know if supplementation can help you is to do a trial run of vitamin B12 supplementation for at least six to eight weeks. If you are using pills or sublingual lozenges, the most useful form of vitamin B12 is methylcobalamin. Talk to your doctor before starting any new supplement to make sure it is safe for you.

Some people will see improvements after a few days of taking vitamin B12 and may do well taking it in a tablet or lozenge that goes under the tongue. Others will need several months to see results and may need nasal gel or injections for the best improvements. For many people, supplementation has been a very important part of an approach to resolving mental and emotional problems.

Vitamin D

Some studies show that vitamin D deficiency, and often quite severe deficiency, is a common problem in people with HIV. Vitamin D is intimately linked with calcium levels, and deficiency has been linked to a number of health problems, including bone problems, depression, sleep problems, peripheral neuropathy, joint and muscle pain and muscle weakness. It is worth noting that in many of these cases there is a link between vitamin D and the health condition, but it is not certain that a lack of vitamin D causes the health problem.

A blood test can determine whether or not you are deficient in vitamin D. If you are taking vitamin D, the test will show whether you are taking a proper dose for health, while avoiding any risk of taking an amount that could be toxic (although research has shown that toxicity is highly unlikely, even in doses up to 10,000 IU daily when done under medical supervision). The cost of the test may not be covered by all provincial or territorial healthcare plans or may be covered only in certain situations. Check with your doctor for availability in your region.

The best test for vitamin D is the 25-hydroxyvitamin D blood test. There is some debate about the best levels of vitamin D, but most experts believe that the minimum value for health is between 50 and 75 nmol/l. Many people use supplements to boost their levels to more than 100 nmol/l.

While sunlight and fortified foods are two possible sources of vitamin D, the surest way to get adequate levels of this vitamin is by taking a supplement. The best dose to take depends on the person. A daily dose of 1,000 to 2,000 IU is common, but your doctor may recommend a lower or higher dose for you, depending on the level of vitamin D in your blood and any health conditions you might have. People should not take more than 4,000 IU per day without letting their doctor know. Look for the D3 form of the vitamin rather than the D2 form. Vitamin D3 is the active form of the vitamin and there is some evidence that people with HIV have difficulty converting vitamin D2 to vitamin D3. Historically, vitamin D3 supplements are less commonly associated with reports of toxicity than the D2 form.

It is best to do a baseline test so you know your initial level of vitamin D. Then, have regular follow-up tests to see if supplementation has gotten you to an optimal level and that you are not taking too much. Regular testing is the only way to be sure you attain — and then maintain — the optimal level for health.

With proper supplementation, problems caused by vitamin D deficiency can usually be efficiently reversed.

http://nybc.wordpress.com/2013/12/08/why-vitamins-b12-and-d3-are-especially-important-to-people-with-hiv/

Living longer with the effects of HIV

Today's article makes slightly depressing reading. It talks about the problems many of us face as we live longer (under successful drug regimes) with HIV. It doesn't mention neuropathy specifically - you'll need to add it in the back of your mind as you read the article - it'll push you right over the edge! However, it is another way of letting you know you're not alone, which does give a tiny bit of comfort when your feet are killing you yet again.

I do take slight issue with the tone of the article. The well-meaning Nancy Travers may have worked with the gay community for ten years but the article comes over as a tad 'preachy'. It's stating the obvious that we need to take care of ourselves and try to live as healthy a life as possible and sometimes we just don't need to be reminded yet again, by a young lady, positively glowing with health (at least in her photo(see link). Then again, I may be guilty of judging a book by its cover and she may also have health problems - if so, sincere apologies!

However, anybody who tells us there are 'rules' for longevity, is sort of asking for trouble from HIV veterans who've seen a fair bit of life and are prepared to give up the health regime for that one reckless indulgence every now and then! The fact that the neuropathy prevents you even doing that most of the time, is not the point.
I'll shut up now and let you read the article:

Living With HIV For Older Americans

People living with HIV today are in a different world than those who were diagnosed even 15 years ago. Although infection with the HIV virus is still very serious, thanks to a healthy life style and proper medication, people who are HIV-positive can now lead largely normal lives for a much longer time. The combinations of drugs available today have allowed many people with HIV to fight infections and stay relatively healthy into old age. Being HIV positive isn't a death sentence anymore. There's a plethora of information out there on how to live well with HIV.

The same rules for longevity apply to people with HIV:

•Cultivate healthy eating habits
•Reduce stress
•Obey physicians' recommendations
•Quit smoking, drinking to excess and using drugs not prescribed by your doctor
•Keep immunizations current. They can help prevent infections
•Get adequate exercise, relaxation and sleep
•Ask your physician for further recommendations and additional help


There are a lot of people living with HIV today who are 60 and older. Unfortunately, they may feel older than their stated age because they are dealing with some of the same problems people much older would suffer. A survey of around 1,000 HIV-positive men and women ages 50 and above living in New York City determined that more than half had symptoms of depression, a much higher rate than others their age without HIV.In addition, most of them had other chronic medical conditions such as arthritis (31 percent), hepatitis (31 percent), neuropathy (30 percent) and high blood pressure (27 percent). Some 77 percent had two or more other conditions. About half had already progressed to AIDS before they'd even received the HIV diagnosis, the report found.Currently, about 27 percent of people with HIV are over 50. More than half will be by 2015, said the report. Due to the special needs of HIV-positive individuals, challenges are on the horizon for public health systems and organizations that serve seniors and people with HIV.

HIV can be a lonely road. According to one report, 70 percent of older Americans with HIV live alone. That's more than twice the rate of others their age. Only 15 percent live with a partner.One possible explanation is that many men and women conceal their condition from loved ones for fear of shame or rejection, whether real or imagined. AIDS- and HIV- related stigma and discrimination refer to intolerance, negative feelings, abuse and mistreatment directed at people living with either disease. This can result in being rejected by family, peers and the wider community; inferior treatment in healthcare and education situations; psychological deterioration; and can negatively impact testing and treatment. The lack of any social or family support increases the chances of requiring expensive outside care, such as home health aides or nursing homes, as HIV patients age.

Many older Americans with HIV are still sexually active, though, and should continue to practice safe sex. While 57 percent of older Americans with HIV said they revealed their HIV status to sexual partners, about 16 percent admitted that they didn't, the report found.

HIV treatment has come a long way in the past 25 years. Today, people with HIV can live long, relatively healthy lives. HIV treatment must now focus on controlling the virus as well as dealing with other health problems that can come with living longer with HIV (such as high blood pressure or diabetes-i.e. normal diseases of aging) and helping people have the best possible overall health. With the right treatment, anyone suffering from HIV can lead a full and long life. Living, and living well, with HIV means understanding all you can about your disease and treatment.

Nancy Travers, a Licensed Clinical Social Worker, specializes in all types of relationships; dating, existing relationships, family relationships, and relationships with friends and business relationships. She also helps her clients overcome anxiety and depression through talk therapy as well as through hypnosis. What sets her apart from many other counselors is that she has counseled in the gay/lesbian community for over 10 years. She also has experience counseling families with elder care issues. Nancy has been in practice for over 15 years and can provide you with the tools you need to approach dating and relationships with confidence. Visit her website at http://www.nancyscounselingcorner.com.


Article Source: http://EzineArticles.com/5601204

http://ezinearticles.com/?Living-With-HIV-For-Older-Americans&id=5601204