how to manage our own health: Do It Yourself – A guide for Changing our World

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Just2know : There is no knowledge that is not power
Just2know : There is no knowledge that is not power

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6 how to manage our own health

Tash Gordon and Becs Griffiths

As the previous chapter showed, every part of our life has an impact on our health. Taking some personal responsibility for our health is an important part of taking control over our lives. It is very difficult to write a tick list for a way to achieve health which is more autonomous and self-managed, but what follows are some ideas on how to become less dependent on medical institutions that have fairly narrow ways of defining and treating disease. We can take more responsibility over our own health by eating more healthily, quitting smoking or drinking less alcohol. But we also need change at a wider social level – it’s not just about taking individual responsibility. The emphasis on collective action means changing your own life, but also for and with others including those who need it the most.

There are a number of ways in which we can manage our own health and what is realistic depends on our personal situations and resources. Below we look at some examples including self-help groups, setting up health collectives, using natural remedies and dealing with medical institutions to your best advantage. What we explore is not intended to be a blueprint for autonomous health. We are not suggesting that these examples are all you need for better health. They are meant to show some steps towards ways of educating ourselves and supporting each other in becoming more informed and empowered – so we can decide for ourselves what works and what does not. To build the infrastructure and gain the skills needed for managing our own health is a long process and one which many of us, used to free and relatively easy to access health services, may find difficult to imagine. However, we will not be able to rely on public funded health systems for ever, and of course many already can’t

– those who cannot afford to pay, who have been refused asylum or those without papers, for example, are denied basic health services.

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health collectives

Health collectives evolved from the women’s health movement in the 1970s which was part of the broader women’s liberation movement. This health movement emerged in the USA from the abortion reform activism of the late 1960s and became an important component of second wave feminism. A group of women in Los Angeles began to meet and do self-examination together (a technique that uses a plastic speculum to look at the cervix, the neck of the uterus, which feminists discovered was one of the most useful tools they had). Through self-examination

women started to be more than passive consumers of health care as they learned more about their own personal cycles and bodies. This learning and teaching went beyond individualistic models of health care as it was done in small groups, emphasising the need for

collective support and directly challenging the physician’s role as expert. They taught breast self-examination, basic physiology and self-care, and provided critiques of medical studies, so women were able to make informed choices about their diagnosis and treatment – from having common infections like thrush to more serious illnesses like cancer.

These ideas spread around the USA and self-help clinics were set up enabling thousands of women to access them. The clinics in the USA also became abortion clinics after abortion was legalised in 1972. Eventually, some of these clinics formed

Box 6.1 Association of Radical Midwives

In the UK in 1976 two student midwives, who were frustrated and disappointed with the increasing medicalisation and intervention in maternity care, began meeting regularly for mutual support. They were soon joined by others and eventually set up the Association of Radical Midwives that still exists today. They are primarily a support group for people having difficulty getting or giving good, personalised midwifery care, which they think is predominantly lacking in the downsized NHS. They started the journal Midwifery Matters, which is now a respected journal mainly written by members themselves, and is on the shelves of a large number of midwifery schools and medical libraries.

Box 6.2 A personal reflection from a member of a Brighton feminist health collective

I have been part of a feminist health collective for five years in Brighton although the collective has taken different forms over the years. It has been a crucial transformative experience both politically and personally. The group evolved from a larger group of feminists who were meeting and were involved in broader anti- capitalist politics. Someone from the group gave a workshop on the history and politics of feminist health and the politics of menstruation and it all began from there. Many of us were amazed that we knew so little about our own bodies and how distorted the information about our own bodies was that we had been given throughout our lives. The collective started with 15 women and we met weekly in each other’s houses, eating food together. Each session ranged from a couple of hours to a whole night and this continued for about a year. We looked at: the history of why so little information is given to women about their bodies and what kind of information this is, our experiences with the medical institutions, charting menstrual cycles, self-exam, ideas around our sexuality, breast health, abortion, pregnancy, AIDS, STDs. We had an allotment for several years on which we started to learn to plant, grow and harvest medical herbs together. One of the most important things I learned is to never solely rely on information given to me from mainstream medical texts or doctors. This is far from objective and contains certain motivations behind why and what information is presented. This was easier to grasp when everyone in the collective did their own research about a particular subject and, once again, we would be surprised at how we had accepted certain ideas and not challenged them.

We started to have monthly open workshops at a local social centre. They were about five hours long and we advertised them in blocks of two or three, explaining what each workshop would be about. From these sessions there evolved another health collective and this still continues. I think that this was important as people who were committed were able to go into topics in more depth as continuity was guaranteed. It also meant that there was a bigger

collective base to take responsibility for the open meetings and enthusiasm was maintained. We have done workshops all over the country, produced ‘zines and organised a national feminist health gathering with other women around the UK. For more information on future feminist health gatherings you can join the feminist health email list: feministhealth@lists.riseup.net.

the ‘Federation of Feminist Health Centres’ network, which still comprises clinics scattered around the USA. In addition to setting up clinics women were active in other areas of women’s health, such as sterilisation abuse, which happened particularly amongst

poor and black women, lesbian health care, birthing practices and midwifery, access to alternative methods of contraception and workplace issues. As a result, many grassroots organisations were established to campaign and challenge the system. Some organisations became professionalised with paid jobs and an emphasis on single issues and in doing so lost their original radical critique. These ideas spread around Europe and health collectives sprang up in numerous places, although there was an emphasis on trying to reform the available free health care rather than creating distinct alternatives.

self-help groups

Setting up health collectives or self-help groups can create different networks of support as well as sharing skills and disseminating information. They can provide practical and emotional support in a mutually beneficial way and help people find collective solutions. Often, the greatest benefits are through active involvement in the organising of the self-help group. Below are some examples.

Action medics

Action medic groups have been created to meet the specific needs of the activist community that arise in a protest situation and also to provide that care in a way which is in line with the politics of autonomous, self-managed, protests. Current groups include the Black Cross Health Collective, Medical Activists of New York,

Boston Area Liberation Medic (BALM) squad and the Bay Area Street Medics in the USA. One was recently formed in the UK called Action Medicswho provided medical support during the G8 summit in 2005.

These networks of activists have medical skills ranging from first aid to qualified doctors and provide ongoing training for new members. Most are volunteer run, non-hierarchical and consensus led with clear policies not to give information to the police, and with many of the medics having an activist background. Their main aim is to ensure that there are trained people during protests and demonstrations. They work as part of a team and are able to deal with emergency first aid situations. The collectives organise courses covering basic first aid and situations specific to protest, such as CS gas neutralisation. Some collectives have websites which feature basic first aid kit lists and basic first aid, including what to do when someone is in shock, has been sprayed with CS gas, has external and internal bleeding, has fractured or broken bones or has concussion. Other collectives have a wider role, like BALM, which runs free health clinics for progressive causes and carries out health care related political actions.

Another important recent strand of work has been the establishment of groups working to recognise, support and raise awareness about mental health issues related to activism. Providing safe spaces for recovery at actions and protest camps is one important part of this. The groups also work to understand how to recognise the warning signs of conditions such as post-traumatic stress disorder (PTSD). These groups do not set themselves up as experts and do not attempt to counsel people with serious illness. However they believe that establishing a support network is one way of challenging the stigma attached to these problems. Choosing a therapist sympathetic to your political cause can be key to recovery. Some people have found that rather than being helped to come to terms with the injuries inflicted on them by police brutality, they are asked to question what made them want to protest in the first place. The information collected on the activist-trauma website is useful for anyone who faces violence or repression wherever it comes from. It states: ‘Supporting people who have been traumatised should be a central part of our lives, for without support and solidarity we can be easily picked off. This is not exciting or glamorous, it’s hard work. However it can be rewarding, interesting and have very positive results. We may sometimes feel powerless in the face of all their power but we CAN help each other’ (see www.activist-trauma.net).

Mad Pride

Mad Pride was set up as a grassroots network by people with negative experiences of the mental health system. Their aim is to campaign to end discrimination against

psychiatric patients – an idea that came out of the 1997 Gay Pride festival in London. A few survivors of the mental health system thought they could put on a similar event and so got together and started to organise. They set up a non-profit company to develop Mad Pride, and in 1999 organised a series of gigs and concerts. The group produced an anthology Mad Pride: A Celebration of Mad Culture (2001) with personal stories of how people experience their ‘madness’. The main objectives of Mad Pride were consciousness raising, educating the public about mental health issues, promoting more positive images of mental health, and countering discrimi- nation and prejudice towards people who have experienced mental

distress. They reclaimed the word ‘mad’ and spoke out about their traumatic experiences within the mental health system. They campaigned and held demonstrations against the proposed 1999 Mental Health Bill in the UK which included compulsory medical treatment in the community and increasing the time people could be held if sectioned.

Mad Pride is no longer active but different projects that were inspired by Mad Pride have sprung up, such as Mad Chicks, Mad Brighton, Chipamunka and Madnotbad. Mad Chicks focuses on issues specific to women mental health users, challenging dis- crimination and misinformation around mental health. They have put on one event with workshops and debates, and their website is full of information and links. Mad Brighton was a week of workshops, a spoken word night and art exhibition by a group of people who wanted to challenge the notion of madness and discuss ideas around so-called ‘mental health’. Chipmunka is a patient driven publishing house of books written about madness and people’s personal experiences. The Madnotbad website is a space for people affected by mental distress to share experiences of misdiagnosis, mistreatment and neglect within the mental health system.

How to set up a health collective/self-help group

This is a generic list that could be useful in setting up many kinds of self-help groups or collectives:

✫ You need to decide who you would like to be part of your collective or how you could get people to join. Advertise in appropriate place like cafes, social centres, community centres, postings on websites, newsletters or magazines.

✫ Do you want to have a close, small intimate group or bigger, more open

meetings? A mixture of both can work. You may want to create spaces where you can advertise and invite lots of people but you need to be aware that by always getting new people continuity of conversation can be difficult. You need

continuity to explore different issues and this really only works when you have a core group of people that share similar ideas and trust each other.

✫ You can set up monthly drop-in sessions that you can advertise. You need to

look for quiet places where you will not be disturbed, possibly social/community centres or private rooms in pubs. If you feel comfortable with everyone, then using each other’s houses can be easier.

✫ You need to decide what issues you want to cover. A starting point can sometimes

be your own health experiences. Once the collective has been established you need to talk at length about what you each want from the group and realistically how committed people are. This might only happen after a few sessions once people get a feel about what the group is or could be like.

✫ It’s important to work out confidentiality. Basically what is said in the room

stays there.

✫ It can be really difficult to deal with a lot of different views as well as the fact that talking about health issues can be very emotive. Sessions can be a mixture of personal stories, sharing research and political debate.

✫ There could be conflict and it is normally a good thing to talk about how you

deal with conflict within the spaces you create. There will always be political debates and disagreements but it’s good to remember to try and not make it too personal.

✫ You can think of what you would like to do in the future: make pamphlets/

zines on your experiences or different topics, network with similar groups, put on workshops or other educational projects or whatever you may be creative enough to think of.

using natural remedies

Many of us have lost the ability to look after ourselves when our immune systems are down using simple remedies like ginger tea or fresh garlic. There is so much knowledge that we can reclaim starting with learning about the medicinal value of the common ‘weeds’ around us or the basic nutrition of fresh food. Wildcrafting is the practice of harvesting plants from their natural, or ‘wild’ habitats, for food, medicinal or other purposes. It doesn’t have to be in the wild – there are many medicinal herbs that can be found growing out of pavement cracks and on urban wild patches, such as around allotments. You will be surprised by how many common herbs are growing all around us. Elderflowers, hawthorn berries, nettle, shepherd’s purse, mullein, dandelion, burdock, borage, calendula, lavender, rosemary, to name a few herbs that

grow everywhere in northern Europe. We can use these herbs and start to understand their benefits by learning about where they grow, how to pick them, dry them and then how to use them.

It’s important to remember to never use plants growing within 10 feet of roadsides, along train tracks, near power lines and fences, or close to cultivated fields and fruit orchards (unless it is organic cultivation). The herbs will be affected by chemical contamination through vehicle emissions, creosote, herbicides and pesticides. Also take care when harvesting plants growing near or in water – there may be agricultural or industrial run-off upstream.You should choose the plants carefully

ensuring that they are exactly what you think they are and are not endangered. Use a book and try and identify plants by their Latin names as you are less likely to make mistakes. Also, learn not to overharvest – one of the rules of thumb is the tree/plant should not look that different from when you started. Wild and cultivated

herbs are best gathered by the season and time of day. Roots and bark are harvested in the autumn or spring depending on the use; flowers in bloom, a few hours after opening or in bud stage; leaves and stems when the plant is mature, early to late summer before fruit or seeds appear; fruit and seeds when ripe, from late summer to late autumn. Favourite hours for harvesting are early morning after the dew has dried off, but before the sun is fully up and in early evening after the heat of the sun has waned but before night moisture sets in. Herbs should be gathered when they are fairly dry – excess moisture dilutes their properties and slows the drying process

– but not in the full heat of the sun. They can be picked at any time if the day is dry, cool and mild throughout.

Exposure to air, heat, light and moisture are the main damaging factors for herbs, whether fresh, dried or in preparations. Fresh herbs should be used within 24 hours of harvesting, unless they are to be dried, in which case they should be prepared for drying within a few hours of harvesting. The first choice for storing dried herbs is an opaque glass or ceramic jar with a tight fitting lid. Metal tins, wood and cardboard boxes, lined with wax or craft paper, can also be used. Plastics are the least favourable containers for long time storage; the herbs cannot breathe and will often take on the taste of the plastic. They should be stored in a dry, cool space. You can store leaves, flowers and tender stems for up to one year, and roots, seeds, dried berries and bark for up to two to three years.

Herbal medicine can be complicated and the powerful effects of herbs should never be underestimated. Some plants can cause severe kidney and liver damage and possibly be fatal. It is possible to treat yourself for anything, but it’s obviously better to start treating simpler things and then gradually build up your knowledge

of each herb and its effects. Often the effects of the herbs can be very specific to the person. Despite this, there are some well known recipes that are often effective, normally relieving symptoms more than tackling the root cause of the condition. The simplest way to use the herbs is to make herbal teas. Take a pinch of one or more herbs, put them in hot water and leave for about 15 minutes for the active chemicals to infuse out.

What follows are a couple of simple recipes. For more complicated ones you will need to do the research and consult a medical herbalist. More holistic approaches to health emphasise a dialogue between the person being treated and the specialist. As with consultations with any expert, the more informed you are, the better you can use the information in the way that is right for you and your body.

Hayfever mix

Make a herbal infusion of chamomile (Chamomila recutita), elderflowers (Sambucus nigra), eyebright (Euphrasia officinalis) and nettle (Urtica dioica). You should start drinking this tea as early as possible, preferably before hayfever season starts. Take the tea two or three times a day, every day.

For eye soothers you can use eyebright tea in an eyebath. Infuse it like a herbal tea and let it cool. Drain the herb and soak cotton wool pads in the infusion and put them on your eyes for at least 15 minutes. It is particularly useful where there is a lot of discharge from the eyes.

Flu/cold

For a good ‘cold tea’ combine equal parts of elder (Sambucus nigra), peppermint (Mentha piperita), and yarrow (Achillea millefolium) and steep one to two teaspoons of the mixture in one cup of hot water. Take it hot just before going to bed. This will induce a sweat, and if the cold is caught early enough, may stop it altogether. Even if it is too late for this it will still be very useful. This tea can help the body handle fever and reduce aches, congestion and inflammation. It may be taken with a pinch of mixed spice and a little honey to soothe a painful throat.

You can make a warming tea throughout the day using cinnamon (Cinnamomum zeylanicum), cayenne (Capsicum minimum) and chopped fresh ginger (Zingiber officinale).

Use inhalations of chamomile, eucalyptus or thyme essential oils to help loosen mucus and heal the throat, nasal passages and bronchial tubes. Boil some water and put in a bowl with a few drops of each oil and then cover your head with a towel, lean over the bowl and inhale.

Garlic helps to detoxify the body. One chopped raw garlic clove on toast or in other meals can help strengthen the immune system.

Important! If you:

✫ are pregnant, breast feeding or plan to become pregnant

✫ have a long-standing illness

✫ have undiagnosed health problems

✫ are on medication

… seek advice from a medical herbalist first. If taken as directed, herbal and homoeopathic remedies are very safe, but they are powerful medicines. Do not use them lightly and do not exceed the recommended dose. When self-prescribing, be aware that you are responsible for your own actions and watch carefully how you react to the remedies. If you notice any adverse reaction, stop taking the remedy and find a herbalist to get more information.

dealing with medical institutions

Recognising the limits of self-managed health care is important, and in an emergency or with a serious health problem you may need to seek support beyond your networks. In the UK free medical care is supplied by the National Health Service which on the whole provides Western scientific diagnoses treated with allopathic (chemical) medicine. There are institutionalised hierarchies in this kind of medical system – those who have been ignored by a doctor or been made to feel stupid will know this. But there are also some inspiring and dedicated health professionals who aim to provide medical care which respects an individual’s needs and desires. An awareness of how to best access the care you need is important. You have a right to play an active role in your care – the fact that you are dealing with a professional does not discount your opinion. Below are some pointers of how to get the most out of a health professional.

Getting the most out of a health professional

1. Find a health professional you trust and get on with. You need to have some belief and confidence in the type of treatments they offer and to be open with them. Either they should understand the way you choose to live your life or be non-judgemental about it. It is worth (services and funds permitting) finding the right person for you.

2. Be clear why you are going to see them. Do you have a new problem you are worried about? Has an old problem got worse? Do you suddenly feel unable to continue with long-standing symptoms? Do you have ideas about what it could be and do these worry you?

3. Think about what your expectations are. Are they realistic and fair? What do you know about the treatments or advice you do and don’t want? The more informed you are, the more active you can be in planning your care.

4. Once you have established some trust, be open. The wider the understanding health professionals have of you, the better care they can provide. Be ready to try things you might not have thought about, as long as they can provide reasonable grounds for trying them.

5. Take the time you need. Maybe you need a few consultations before you establish trust or a good understanding of the problem. If you want to go away and think about things or talk them through with others, this should always be acceptable.

6. Make sure you understand. Clarification should always be sought if things feel unclear. Written information can be helpful to look through in your own time.

7. Ensure the treatment plan is a joint one. Unless you can see the point of the treatment and think that it is feasible in your current situation you may not be able to follow it through. The health professional is there to help you find the right treatment for you, not dictate it.

8. Have plans for future care. Know what to do if things get worse and if you need to be seen again or can manage your own care.

9. Take responsibility. If a physiotherapist has advised regular stretches – do them. If you know lots of late nights make you worse, try and avoid them. It’s your health and you can go to as many appointments as you like but unless you are prepared to take care of yourself, no one else can.

10. Treat health professionals like a human beings. Yes, they are human and have good days and bad days and they appreciate a smile. It can be a demanding line of work, with a lot of people offloading problems onto them. Small things, such as asking how they are or saying thanks, make a big difference.

ways to better health…

This chapter, along with the previous one, hopes to inspire and give ideas about how we can organise collectively to have more control over our health – both by

being more aware of how the society we live in interacts with our health and by giving examples of what we can do to challenge this. Our needs and capabilities will vary between individuals and over time so we need to be creative and open to new ways of tackling health issues and taking some control over them. A realistic attitude about the limitations of a society, where we face many barriers to our well- being, is important. Some problems will not be overcome by self-help groups or food co-operatives and allotments but only by significant social change. Inequality and oppression aren’t easy to eradicate, but we can act to challenge and hopefully reduce them. In the same way, we can’t simply do away with ill health, but we

can do more to decrease our chance of it or speed our recovery.

Tash Gordon lives in Leeds, UK where she works in an inner-city GP practice. She does voluntary work with homeless and asylum seeker communities, runs an acupuncture clinic and is also involved in the

Common Place – an autonomous social centre. Becs Griffiths has been part of a feminist health collective in Brighton, UK for the last five years to whom she is extremely grateful for all their wise advice and support. She is also involved in the Cowley Club, a social centre in Brighton. Becs was involved in the national feminist health gatherings in 2004 and 2007 and Tash was involved in 2007. The chapter draws upon many people’s experiences and ideas. With particular thanks to Brighton Women’s Health Collective.

resources

Books

Self-help, self-exploration

Boston Women’s Health Book Collective (1989). The New ‘Our Bodies, Ourselves’. New York: Simon & Schuster.

Chalker, Rebecca (2000). The Clitoral Truth. New York: Seven Stories Press.

Federation of Feminist Women’s Health Centres (1981). New View of Women’s Body.

Feminist Health Press. New York: Simon & Schuster.

Shodini Collective (1997). Touch Me, Touch Me Not: Women, Plants and Healing. New Delhi: Kali for Women.

Weed, Susan (1996). Breast Cancer? Breast Health! The Wise Woman Way. Woodstock, NY: Ash Tree Publishing.

General health

Douglas, J. (1992). ‘Black Women’s Health Matters: Putting Black Women on the Research Agenda’. In H. Roberts (ed.) Women’s Health Matters. London: Routledge. 45–60.

Ehrenreich, Barbara and Deidre English (1973). Witches, Midwives and Healers, London:

Compendium.

Ehrenreich, B. and D. English (1974). Complaints and Disorders: The Sexual Politics of Sickness. New York and London: Feminist Press.

Ehrenreich, B. and D. English (1976). Witches, Midwives and Nurses. Old Westbury, NY: Feminist Press.

Hartmann, B. (1995). The Global Politics of Population Control. Boston, Mass.: South End Press.

Heath, I. (2005). ‘Who Needs Health Care – The Well or the Sick’. British Medical Journal

330: 954–6.

Iheanacho, I. (2006). ‘Drug Trials – the Dark Side: This World’. British Medical Journal

332: 1039.

Illich, I. (1976). Limits to Medicine. London: Marion Boyars.

Johanson, R., N. Newburn and A. Macfarlane (2002). ‘Has the Medicalisation of Childbirth Gone Too Far?’ British Medical Journal 324: 892–5.

Kawachi, I. and B. P. Kennedy (1997). ‘The Relationship of Income Inequality to Mortality

– Does the Choice of Indicator Matter?’, Social Science and Medicine 45. Amsterdam: Elsevier Science Ltd.

Laws, S. (1991). Issues of Blood. Politics of Menstruation. Basingstoke: Macmillan. Leslie, E., B. Watson, T. Curtis and R. Dellan (eds) (2001). Mad Pride: A Celebration of Mad

Culture. London: Spare Change Books.

Money, M. (ed.) (1993). Health and Community. Totnes: Green Books Ltd.

Moynihan, R. and A. Cassells (2005). Selling Sickness: How theWorld’s Biggest Pharmaceutical Companies are Turning Us All into Patients. New York: Nation Books.

Moynihan, R., I. Heath and D. Henry (2002). ‘Selling Sickness: The Pharmaceutical Industry and Disease Mongering’. British Medical Journal 324: 886–91.

Nissim, R. (1986). Natural Healing in Gynaecology. New York: Pandora Press.

Thomas, Keith (1971). Religion and the Decline of Magic. Studies in Popular Beliefs in Sixteenth and Seventeenth Century England. Oxford: Oxford University Press.

UNDP (2006). United Nations Development Programme Human Development Report (http:// hdr.undp.org/hdr2006).

Vincent, P. (2002). Babycatcher. New York: Scribner.

Wilkinson, R.G. (1992). ‘Income Distribution and Life Expectancy’. British Medical Journal

24: 63–72.

Wilkinson, R.G. (2001). Mind the Gap: Hierarchies, Health, and Human Evolution. New Haven: Yale University Press.

The witch hunts

Frederici, Silvia (2004). Caliban and the Witch: Women, the Body and Primitive Accumulation.

New York: Autonomedia.

Lady Stardust (2006). The Witch Hunts in Europe 1530–1690, http://escanda.org/RWG/ Texts/witchtrials.html

Websites

Campaigns and self-help collectives Activist Trauma www.activist-trauma.net Baby Milk Action www.babymilkaction.org

Bay Area Radical Health Collective www.barhc.w2c.net Black Cross www.blackcrosscollective.org

Boston Area Liberation Medic Squad www.bostoncoop.net/balm Common Ground Health Collective www.cghc.org

Medical Activists of New York http://takethestreets.org Sambhavna Trust, Bhopal www.bhopal.org

UK Action Medics www.actionmedics.org.uk/index.html

Mental health

Chipmunka www.chipmunkapublishing.com Icarus Project www.theicarusproject.net

Mad Chicks www.mad-chicks.org.uk/index.htm Mad Pride www.ctono.freeserve.co.uk Madnotbad www.madnotbad.co.uk

Natural remedies

Herbal medicine www.susanweed.com

United Plant Savers www.unitedplantsavers.org

Women’s health

Bloodsisters www.bloodsisters.org

Handmedown Distribution vivavocewimmin@yahoo.co.uk (Email for books on feminist health.)

Sister Zeus www.geocities.com/sister_zeus

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