Sunday, August 30, 2009

Here we go again.

Oh dear, dear. Its happened. I have been so good and my rheumatoid arthrutis has been so good and now.. I had such difficulty standing up and walking that my daughter had to pull me up and support me. Saw my so kind rheumatologist, had a blood test done. To digress, do you know how much fun it it to have your blood taken when you can't straighten your arms and oh, when you have "running" veins? Much fun. I would highly recommend it especially to all you masochists. By the way "running" veins are those misbehaving veins that move and run away when needles go in.

End of digression. Saw the doctor again for my blood tests results. That so and so RA snake has flared up! Then there is this vertigo and this... When it rains, it pours. So what's new.

I am not going to let it get me down. I will get better, please help God.

In the immortal words of Gloria Gaynor which I will repeat often "I will survive"!

Tuesday, August 25, 2009

Pain : Part II - The Light at the End of .....

My last post might seem rather negative. It was not meant to. It was to set out some realties. If we do not face Pain, look it straight in the eye, we cannot deal with it. That is also a reality.

You might be lying on a bed or sitting on a church with your arms crossed, hugging yourself, the pain coursing through your body. You will get relief. Something will work for you, some drug will sooth those hot, swollen joints, will pull off the clutch of pain from you.

Cherish those moments when you are pain free or the pain is tolerable, those periods of remissions. Hug yourself, hug your family, hug your dog! If you are alone, hug the wall. Stretch, walk around, do the things you were denied by the pain. Walk in your garden or in the park and smell the grass and the flowers.Do a jig - Becareful of those joints okay. Rejoice in the bliss for it is bliss for those who know such pain!

Sometimes the worst of the pain never returns. Kiss the ground and thank God. Sometimes that relief will only be for awhile and pain comes back to grab you and pull you back into its clutches. Thank God anyway. Caress those parts of your body which hurt the most, kiss you poor twisted fingers. Dance, dance if only in your mind and sing out loud. Sing out your frustrations, sing out your pain. Don't make pain be what you are, it is not.

This is my promise, life will get better.

Friday, August 21, 2009

Pain : Part I - Theory and Reality

We are told that pain is the body's way of telling you that something is wrong. There is a rare disease which causes the person suffering from it not to feel any pain.

"Mind over matter, you can do it" "Don't think about the pain". "Think of those worse off than you, those suffering from cancer for instance". These are some of the things said to people suffering pain on a continuous basis, including many with Rheumatoid Arthritis, to encourage them and to give them some sort of comfort.

Some are uncomfortable with another's pain. They would rather not see it. "Out of sight, out of mind". Many want to help, doctors, friends, family, kind strangers you meet.

I remember lying sideways curled up in pain on my dear mum's bed. Every inch of my body burned with fire. I could only moan. I was helpless, defeated by my own body.

Pain is insidious, it slithers around your body and insinuates itself into every part. It has a life of its own. When pain is that bad, all you want to do is die. I should know.

That is the reality of pain.

Saturday, August 15, 2009

Dance of a different kind.

Last night the RA snake released me for a few glorious minutes. I got on the dance floor and danced. I did tell all near me to catch me if I fell and I did have a chair nearby to grab hold off but I danced!

At every family function, I say I want to dance, it does not happen most times. Last night was a large do to celebrate my brother in law's birthday. There were the speeches, the dinner, the cake, the singing and then my dear nephew announced that the dancing was to start with me on the floor. Well, in case you are wondering, I did not lead everyone in a Vienna, Viennese, waltz. He did get me on the floor eventually and I thank him for that sweetness and caring.

I have always loved dancing. I even learned ballet as an adult. So the utter frustration of not being able to tell your feet to do what you want them to do, to not stop being afraid of falling is not easy for me to handle.

The funny thing is that I don't feel the pain when I am dancing. I must just not stop. Better than a pain pill any time.

So fight the pain, grit your teeth force your lips to lift in a smile, move whatever you can even if its just your little finger and DANCE!

I know I will.

My left foot

That darned left foot!

Thursday night I was in bed when my left foot started spasming like it had a life of its own. And no, I did not have a foot transplant, its all my own. It did feel as if a snake was sinking its fangs in me and its venom was spreading. This went on half the night with me shouting out to my daughter to help. Poor thing, she felt so bad for me and I felt so bad taking away her much needed sleep.

Sometimes its easier to be alone with your pain. You can shout, scream, cry and not cause anyone else distress. No one human at least. Mikey our toy poodle gets rather alarmed. You can "hear" him think "here she goes again." At times he covers his face with his paws after giving a long sigh.

You are actually alone in your pain.

Wednesday, August 12, 2009

Life is life.

Pain demoralises you, it incapacitates, it can make you ineffectual, it can dehumanise you. Many people, even family members may think you are exaggerating, that it can't be that bad. You know that's what they are thinking! There's no pain like a big pain huh?

Maybe only those who have suffered pain can really empathise. So what do you do. You can curse God or fate with a " Why me???" and sit around doing nothing but feeling that pain or you can sit up and realise something. Life with pain is still life.

My cousin passed away two days ago. She was just too young. She left behind her very young son, her grieving husband, mother, brothers, sisters in law and so many others. She was such a nice person in the real sense of that word. I never saw her without a smile that reached the depths of those beautiful eyes of hers. Would she have chosen to have lived but with pain? I am rather sure she would have.

Rest in Peace our sweet Kireen.

Friday, August 7, 2009

Nature and us.

Been feeling real bleah! Its the blooming haze. Everyone has sore eyes including my daughter. Don't let go on about the sore throats. I won't.

Then there is the H1N1 virus or swine flu. Another zoophonic(don't know if the spelling is correct) disease? Nature is still so mad at us. Come on everyone, what do you expect! We waste, cut down jungles and forests like there is no tomorrow, take away habitats of animals, ensure the extinction of so many species of animals and plants. Be well aware that if they go we "superior" humans will follow soon after.

Its always about development, development. The tallest building, the fastest car, the most powerful weapons. What about education, health, peace?

All this pollution hurts. Those with respiratory ailments suffer the most, it does not do much for those with autoimmune diserases like RA, either.

God please give us some rain to clear this foul air.

Wednesday, August 5, 2009

Oh the Pain!

I was writhing with pain when I went to bed last night. The snake was pushing, not letting me rest. Spasms were causing my left leg to jerk erracticly. Could my left leg be possessed? Time for an exorcism!

Had some meaningful time alone with my toy poodle yesterday. Well he thought it was meaningful. I do believe he thinks the sun orbits around me. Nothing like a dog to perk up your spirits. Which human being would be able to be with you 24 hours a day and not be tired and maybe fed up. Even family members could not do it.

It's difficult to see someone you love in pain. It is difficult to be the one in pain!

Had another acupuncture treatment. This time only 4 needles to my usual 14. My ooow tried to reach the roof as she inserted and twisted the needle at the side of my left knee. First time she drew blood. Tried to keep that blood on a tissue for posterity but alas just a tiny drop. Not worth the attentions of even a vampire.

Spent much too much time on my laptop answering emails, facebook messages and threads on the forum.

Used a scrub on my shoulders and lower neck, they were looking rather scruffy. I know I know I am just so vain.

We have to try. RA and pain must not defeat us!

Tuesday, August 4, 2009

Trying everything - Acupuncture

Have started acupuncture. I am told it helps. Practioner is a kind woman, has a good reputation and known off even by my rheumtologist. I am one of the 1% who feel more pain after the first few treatments ( Of course I am.). I had vasculitis, one of the rare complications of Rheumatoid Arthritis and my nerves have been damaged and my blood vessles have narrowed. My former rheumatologist who became a friend told me half jokingly "Well, looks like if you can have it, you will." Fun and games all around!

Sorry for that digress. My rheumatologist is also trying to help me with the numbness the consequences of the leavings of vasculitis.

Had a lazy day yesterday. Worked from home on my new laptop, Armand if you read this, please tell me I bought the right one. Computers are a lifeline for me and others like meut don't do what I do. Force yourself to get up every hour, every half hour even, and walk around,exercising your arms too. Do not get too stiff!

Saturday, August 1, 2009

Second day

Another day. Examined my battle scars. They do form interesting tapestries on mylovely legs.

Logged into a forum where I have been told, inter alia, that I am a child of satan and that I will go to hell for disobeying God. All because I said I did not believe it was a sin to have the view that God does not command women to submit to men - at least the God I believe in. Nothing to do with RA specifically but to do with the trials we have to endure if we want to live full lives, even with RA, chronic pain and all.

When you have RA or any other debilitating and or painful disease, people in particular family, want to help you, wrap you in cotton wool and with that comes loss of some control, some of your independence.You may already have lost your mobility. If you "talk" in forums and blogs on the internet, no one knows you shuffle and walk normally, no one knows you have pain, no one knows the restrictions you have no choice but to endure and no one need pity you for that. You have your brain and your mind and that is all you need to stand tall (figuratively I mean.