I reserve the right to edit for spelling and decency. Letters with no valid email or those which are intended to offend end up in the wastebasket.

FROM:Michael Marks
Dear Eddie:
I am a strong believer in links of more than the computer kind. Three things happened in a row on seeing your page, one; the name is just so great you have to have a look, I was feeling pretty desperate at that minute in a lot more pain than usual. So I ran up Osteo in the hope that someone must know something about this rotten thing. So under the Osteo listing as I said I saw a name I liked. Two: I see the obvious help with the ague. Three: I see you're a musician (I am working in the studio as I am writing). Four: I am smoking a joint as I see the comments of one of your obviously enlightened visitors with regard to cannabis, without that particular aid this last year I was getting pretty near to wanting out.
I got in an awful mess with the use of propriety pain killers, there are times that I still have to use them for the sake of sanity but I dislike taking them intensely. Cannabis for me has proven much the lesser of two evils and yet my own conflict with using that drug has been terrible. I think much of it for me is based in some kind of permanent guilt state visited upon us in the Catholic boys homes we grew up in. Prior to my own condition becoming bad I had been in recovery for Twenty Years with various programmes, completely drug and drink free.
In hindsight I think I turned into something of a prig. I have known for many years for instance that alcohol of any kind for me is a zero option...besides the lunacy that comes with that lifestyle anyone who wants to find trouble of the worst kind is gonna start mixing arthritis with a liquor bottle particularly whilst you still have mobility. I think in my own mind and as a defence mechanism I associated all other substances with the state alcohol once had me in. It was therefore a considered gamble in my own case the first joint of a few years back but I dont think I have to tell anyone who has been receiving various "medical" concoctions for any length of time the horrible side effects that can come from such use.
In the particular week that I re-entered the smoker's world I had been offered small doses morphine from my pain centre, frankly that scared the pants off me. I had been a heavy user as well for a number of years and I knew some of the road ahead so I declined the offer and at that point decided for myself how much I really had to loose (I'm fairly deep in the kaka anyway). For me and I speak only for myself and from only my experience it turned out to be something of a lifesaver. It does not stop the pain, nothing stops the pain, what it does do for me is removes enough of the pain focus and replace it usually with a guitar and a heavy work schedule so I can get on for the most part with what I want to do. Sometimes I get licked as we all do and have to take to the bed or the chair, but I am still here and doing, the chair is smack dab in front of the computer so when the wave is ridden out I can go back to work. I was like a zombie there for a good three years and frankly there's nothing for me in that time I want to go back to, those medications for me have to be treated with a lot of respect. Osteo Arthritis is a great teacher for me...for checking the ego (and I started life with a whopper). I don't much care for the teacher sometimes, most times in fact, but there's no denying that I am forced to learn, best way to learn is to be there I guess. I still have my hands and wrists though they are getting clumsy, my last album made Irish CD of the month in Dublin. I'm out to make this my best yet and I will keep pumping them out until I have fixed up my family with an income. I'm gonna go now Eddie2Dogs, thanks for giving me somewhere to spout off some, I'm gonna keep your page here and come back, first off I am gonna go and have a listen to your music. Take Good Care.
Mickey

REPLY:Oy Mickael.
Glad to read your letter at a time when I am myself at wit's end. That we all must cope is a given, but how is an age-old question. Some of us get on with life, coping as best we can, while others have thoughts of suicide as a final answer.
Let me not belittle this last option, as it is the ultimate in hoping for some relief, if not from the general state of affairs, than just that of getting rid of pain, whether physical or psychological.
I agree that our disease conditions are great teachers and taskmasters, demanding from us some intelligent action. Without this intelligence one cannot hope to deal effectively with what life deals us.
One goal we must all have, irregardless of how we cope, is to stay as active as possible, and reading that you use your music to this advantage is ally #1. The other ally of course is our brain, which in this day and age, with all we have at our disposal, cannot help but be enlightened.
That traditional pain meds have played a major role in how we cope is no understatement, but to allow new methods to be used as an adjunct has many times been belittled by the establishment. First, if it is illegal it must be bad. Second, if it is illegal than those who cross the 'line' are criminals. And here is the problem...we in Canada are permitted Federal dispensation in the use of canabis for extreme medical conditions, to control pain, to induce appetite, to control nausea, and to control the psychological impact of the disease itself. This is common for terminal conditions (cancer etc) and also for arthritis.
Here in British Columbia we have The Compassion Club - Canada's largest medical marijuana buyers' club duly set up under the BC Societies Act, based in Vancouver.
I wrote them an email about a week ago with a reply somewhat late (it took 6 days) but at least it arrived. I wrote to them as a client, not as a reviewer of their service, as a cancer victim and severe arthritis client. So if anyone else decides to click on the link and write them I would be interested to hear how long one must wait for an answer. It is my understanding of netiquette that emails/guestbooks should be answered in a timely manner. One large problem is their guestbook, which looks more like a sign-up petition/discussion board for hard core dopers. I am really quite disappointed that this society does not protect itself a bit more vigorously (at least to appear to operate within their mandate of medical intervention.
Now because of my situation if I so decided I would have to approach a street dealer to get my legal 30 grams permissible under the medical exemption, which would in turn leave me open to be busted.
We in Canada are not the only people who have allowances for this type of medicine. But it is a hard topic to discuss (in the same vein as euthenasia is hard to discuss). It is a personal choice one makes with one's doctor (if the doc is enlightened enough to even contemplate the question).
So in the meantime we must make do, and do it as well as possible. Hopefully this reply will enlighten others to learn of different attitudes and methods in health care, and also that the police forces will stop trying to intercept our legal medicine (once they intercept the mail it comes in it then becomes an illegal substance again and cannot be forwarded to the recipient) which seems to be happening at this moment in Canada. When someone here gets an exemption they are entered on the police computer system so that they are known and therefore left alone. But more problematic is that they then know whose mail to intercept, who's door to knock on. And in this again makes us vulnerable to stress and interference. They (RCMP) actually knocked on a woman's door, hospital bed and medical aids in full view from the front door with a seized mailpacket containing her legal canabis (they did not arrest her)...at the same time telling her they could not give it back to her because in their possession it becomes an illegal substance and therefore it would become a criminal act..it would make them dealers. (my personal rant against our own renowned RCMP, some of whom I know as personal friends and show their sympathies). Of course the police forces are openly against this exempt status and are probably trying to make their statement by picking on the ill and dying.
Thanks for allowing me this one rant...Take care Michael, and good luck with your new album, I would be interested when it is completed. Now I feel I must go and lie down for three months....

wel to rusten.
Eddie and his Snooper Dogs (Minnie and Mikey)

Hi, my name is Pat. I suffer from osteoarthritis in the left knee, left hip and small of my back. I am just now coming out of a major flare up where I wanted to die. The depression and pain nearly did me in this time. It scares me to death to think of having this horrid horrid debilitating pain returning. I would treat my kitten Sammie better and put her out of her misery.
Does anyone know that dampness is bad for arthritis? I am trying to figure out why I had such a bad flare up and can't seem to get a grip on that either.
How can a person cope when you're wallowing in agony and nothing seems to reach it. It's the pits. To hell and back. I HATE IT LIKE HOLY H---!
Depressed and coping, Pat :(

Reply from Chronicity:
Hi Pat:
To reply to your condition... If 'flare-ups' are involved then inflamation is involved. This is the major cause of the pain. I know the feeling, as I have had AS since puberty (now in my mid-50's), but seeing that inflamatory type of arthritis is involved I wonder if you should visit your doc and tell him/her about the flare-up (of course I can't tell whether you have done this already). If inflam is involved you will need to look at NSAIDS (non-steroidal anti-inflamatories)...drugs such as aspirin which you would have to take 10 at a time. This of course is not advisable if you value your stomach and its health. These anti-inflamatories by prescription are much stronger than over-the-counter meds and seem to be needed in your case. Please see a physician regarding this. No-one needs to live with that type of pain in this day and age. I will put this message of yours up on the board today...hope you get back some replies (other than people trying to sell you something...keep tight hold of your wallet please). Osteo-arthritis is the end result of....inflamation or wearing down of the bone ends, joint spaces. You must look at the causes as well, not just at the results. If a flare-up happens you can bet that inflamation is the actual flare-up, and living in a wet climate is rather an easy suspect for blame, but not exactly true..it is the amount of 'pressure' in the atmosphere that some of us are extremely sensitive to. Of course when it rains, the pressure drops, in climatology it is called a low-pressure system. If you were to live in an environment such as the high arctic or Death Valley the pressure would stay about the same for long periods of time, so that the 'changes' in pressure would not be noticed. But if you live near a coast line or an area of frequent storms your body and joint spaces have to adjust constantly to differing pressures in the atmosphere, hence the discomfort or in your case extreme pain. This cause and effect was noticed even during the 1800's and that is why people used to move to Nevada or some other DRY spot...not because of the dryness, but because of the steadiness of air pressure. I hope that you get some mail from others who are likewise affected. Hearing from those in the same boat usually does more to make us feel ok than any word from a health professional. Keep well, take my words to your doctor as well, and make sure you have a physician you can talk with, as person to person istead of someone who speaks medicalese.
My best to you, Ed

From [email protected] March 30, 1999

In February 1999, I was diagnosed with "Chronic Lymphocytic Leukemia" and I have an enlarged spleen. The high WBC's came out in the 1995 lab tests, but my main care giver did not catch it until this year. The stress of knowing that I have Leukemia, even if no treatment is yet necessary, has affected my blood glucose (I am a Type II Diabetic). This morning the glucose was up to 285. On top of this, for the past few months I have had a lot of pain in my right shoulder and arm. At the beginning of March, I noticed a slight lump on my upper right arm. My family doctor said this is nothing serious and that a lot of people get insignificant lumps on different parts of their body. This area is where I feel most of the pain and I have lost some flexibility of my right arm. (I think I need a new prime care giver.) All this has affected me tremendously. I can barely sleep, waking up 2-3 times each night and getting up between 3-4 AM each morning. I have not been able to go to work 15 days during February and March.
Any suggestions? Thanks for your help.

Reply from Chronicity:
Hi Alice:
As a person with severe chronic arthritis myself I can say this to you. Yes, the doctor is correct about the 'insignificant' lumps we all get. The thing to watch for is the changes in the lumps, growing or misshaping is a sign of needing immediate medical input, otherwise they are quite benign but worrying none the less. Another point, although I am sure I really don't have to mention, is to keep your Diab II in check, as level as possible. You will find that this will need more attention now than it did before, but should be manageable.
Coping with leukemia is difficult for sure, and you have our support. But as you suggest, a second opinion is usually welcome and should be sought after, not that you mistrust your doctor, but that two heads are always better than one.
Please, you must also keep fighting any depression or undue worries. These are the real enemies of any condition. Get in touch with any leukemia or cancer society or foundation closest to you, they will have some of the best hardcopy info available, usually for FREE. And keep reaching out...there are others like yourself who have a wealth of info, and those who have battled it themselves are usually the best support people you can get in touch with.
Take care of yourself, you are the primary care giver at home, but take every piece of knowledge and support you can. Stay optimistic, it is this type of attitude that gets us through our problems. And by all means, talk, question, and give your opinion. it is all priceless.

Sincerely, Ed