Ehlers Danloss Disease
Corry
33 years old NL
I am a young woman with two children and I have Ehlers Danloss disease.
hen I have infections in my joints and cartilage, they often last for more
than ten days and can become malignant. In the past I used Prednisone for
this very often. That so-called 'medcine' amounts to an assault on your life.
hen the infections got out of control they had to remove my breast, my
womb and part of my legs. I had been in hospital and had used a lot of
morphine to get rid of the pain. My partner came up with the idea of using
marihuana. After all, morphine is a hard drug and weed isn't. My partner
had heard in a coffee shop that weed relieves pain. I was rather sceptical
about it at first because I was in so much pain. Sometimes I couldn't even
sit, certainly not in my wheelchair, so I spent a lot of time lying in bed and
kept on losing weight.
Then I thought, 'alright then, let's give marihuana a try.' e went to the
doctor and he said,'go ahead, I am definitely in favour of this idea. Go and
try it. Maybe this will help you cut back on morphine'.At the hospital, they
also supported the idea and said,'try it. It's better than using morphine'.The
doctor gave us a note and sent us to a certain coffee shop in town. There
they gave us a patient pass that gave us a fifty percent discount on weed.
My partner went to buy it. At first, I only smoked it in the evening to see
if it would help me sleep. The pain used to wake me up at night despite the
morphine and sleeping pills and I couldn't really lie down either.
I must say that no changes occurred during the first two weeks after I started
smoking marihuana. It did give me an appetite. That was very good; I was
starting to get some of my weight back. Then I started carefully cutting
back on morphine and started smoking weed a little more. I noticed that
I became calmer and could accept the pain. Weed doesn't remove the pain
completely, at least not for me. It allows me to experience pain in a different
way. I become calmer and can accept the pain better and this allows me
to sleep more calmly. I was able to cut back on the morphine and now I
oy use ten milligrams 'when necessary'. Fortunately, that is not very often.
I have stopped using sleeping pills altogether. When the pain is killing me
and I don't want to take morphine, I make a cup of hot chocolate milk
and melt a little bit of hash into a bit of butter and add this to my drink.
Then I no longer need morphine with all its nasty side effects. I smoke a
big joint, at least big for me, before going to sleep. Three grams of weed lasts
me a month, even when I smoke a little during the day. I don't need large
amounts.
Weed often gives me the munchies, which is very important to me, because
I still have a lot of weight to gain. Before, I had absolutely no appetite, but
now sometimes I get up at night and go downstairs to eat a big brown bread
sandwich! This disease causes joints to dislocate easily and eating was painful
because I regularly dislocated my jaw. This might sound really odd, but
the more relaxed you are, the easier it becomes for your muscles to keep
things in place. Prescribed muscle relaxants couldn't prevent my jaw from
dislocating, but weed has such a relaxing effect on my muscles hat I can eat
anything now.
I feel happier using weed instead of morphine. Morphine always haunted
me with the frightening thought, 'you're going to end up as a junky,' even
though I was using it for a completely legitimate reason. Fortunately, I got
the clean stuff, but it still scared the hell out of me. Weed doesn't give me
morbid thoughts like that, so I am able to relax a lot more and being more
relaxed means less pain. I used to use a lot of painkillers and muscle relaxants,
but I don't use any of those anymore. I only use those ten grams of morphine
when necessary I use Prednisone on very rare occasions - only when I have
an infection - to prevent further amputations.
I have used medicines for over one and a half years and have been smoking
weed for the past nine months. The medicines caused many side effects. I
have two children, but I always felt drowsy and spent a lot of time in bed, so I
missed out on what was going on around me- I was an invalid, but now I get
out of doors again and can walk and do thin&, so that's a big difference. The
drowsiness that was caused by morphine made me feel as if I wasn't present
at all. You are there, but it's like being wrapped in a woollen blanket. People
would visit me and ask,"How are you doing?" AII I could say was,"not well
really, because I'm back in bed. I miss my children so". My children were
supportive and they would often come and sit by my bed, but I was too
drowsy to do anything with them. Thanks to using weed, I am there for my
children again. I am downstairs once more and not in bed. The insurance
company won't cover the cost of my weed, despite the fact that a doctor
recommends it. I phoned them about this and they told me that I should be
glad that they covered the morphine costs!
I had to be admitted to hospital regularly before I started using weed,
because my weight was too low. They gave me Fortimel, a medicine to
gain weight, but it had to be taken while in hospital, or else the insurance
wouldn't cover the costs. Now that I am smoking weed and no longer need
to be admitted and have stopped using many medicines, the insurance company
is actually a lot better off. I am saving them a lot of money, but it isn't
cheap for me,because I have to use my social security income to buy weed.
And to make matters even worse, my partner left me after twelve years and
I have to face everything on my own now. If this had happened to me nine
months ago, without cannabis and morphine once in a while, I would have
had to place my children in a foster home, because I wouldn't have been able
to take care of them. Now I am able to.
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