Happiness is...

Oh Happy days..as the Gospel song goes. Its two weeks to Christmas and my daughter will be back with me tomorrow. I am like a child when it comes to Christmas. Who cares about rheumatoid arthritis and the pain! I will hobble along to do my shopping and to listen to carols. I am reborn with the birth of Christ.

The only thing different with me as an adult at Christmas is that I love the giving more than the receiving. I still find joy at finding presents for people I care about. My daughter is not too into the shopping bit but will wrap the presents willingly and cheerfully. Five years after her death, I still miss the present wrapping and the carol singing with my dear Mum. I just miss her.

I have been singing carols to my birds. My macaw's favourite right now is "Silent Night". He trys to sing or rather warble along, doen't have a great voice but then, neither do I.

Its the season to be jolly and darn it, pain and all, I will be jolly.

Don't think ahead.

You are usually advised to think ahead, to plan your future. It is said that it is good to plan your days so you make the most of them. Organisation is essential, in particular organisation of your time as time is precious and time is limited. There are only 24 hours in every day however much you try to stretch an hour.

Aah! Not always and I say this from painful experience - emotional and physical pain. The best laid plans of mice and men to quote Robert Burns are often shoved aside (to quote me) when your RA body is being difficult. Chronic illnesses like rheumathoid arthritis are not always cooperative you know. You make plans to spend time with friends and the pain flares up. What a pain!

Another thing about making plans and having RA is that thinking ahead can be overwhelming , to say the least, and it may all seem so hopeless. Getting out of bed in the morning takes a lot of effort and will power. I pray as I try to push myself off the bed. Sometimes I fall back or I have to sit down again. I need a firmer footing. Then that long journey to the bathroom, my handphone in hand. I place the phone down and continue my shuffle. That's how the day goes.

So it makes more sense for me to get things done in stages thinking only of getting one thing done at a time. When that is done, I go to the next and so on. If I think of all I have to do and go through every day, I will not be able to get any sleep. Everything will keep going around and around in my head. That would just make things worse in the morning.

So for those with chronic illnesses like me, please don't think ahead and anticipate all the problems to come. There will be problems but anticipation will just make it worse. You can get through the day and be proud of yourself when you do. I do every day and I am.

Dreams.

I have more times than I should, thought of my lost dreams, dreams lost by my RA. Others with chronic, painful illnesses and especially those with terminal illnesses, must do the same. I can't blame RA for all my lost dreams, though. Life has taken its toll.

I think of my dear friend, deadly ill and now virtually in a coma. Her family is in anguish. They don't think of their dreams, they just want their wife/mother/aunt/daughter to wake up and talk to them. They may not think of them but their dreams may just disappear. Her husband's dream of growing old together with her, each supporting and loving the other. Her daughter's dream of having her Mum at her wedding, helping her prepare and giving her advice only a mother can give. Her son's dream of having his mother with him as long as possible.

So I can mourn my lost dreams and let them go. I have and can have new dreams. Dreams lost are never found.

No one really knows what is happening to my friend. Can she hear her loved ones talk to her?

I know my God is kind and allows her dreams while she sleeps. Dream beautiful dreams my dear friend. Perhaps you will honour me by sharing them with me some day.

Prayer for a Life.

I have not done much posting lately. Its mainly because a dear friend of mine and of my family has been fighting a battle for her life. She went through so much in the past and now this. We have prayed and continue to pray for this brave woman. Her family suffers while waiting and hoping.

Now is the time to spend time with your loved ones, to cherish. Don't wait to say the things you want to say, thinking that there will always be time. The time is now.

Pray for all. My dear mother mentioned the names of all she prayed for every night and it was big list.

I will pray again and again for your precious life dearest Joyce.

My Right Foot.

My left foot has been rather cannabalised by vasculitis and is going another direction compliments of RA. I have had my left hip replaced. So you would understand how much I depend on my right foot. It still has all its toes and some arch.

My dear german shepherd Amber loves to play with anything she gets her paws and her mouth on. Her latest toys are her water bowls. She puts a foot one and drags it all around. She has this huge plastic water bowl. Its heavy but she has no problem picking it up and tossing it around. Lately, she has been carrying that bowl in when I call her into the kitchen for her food. She drops it in the kitchen and I push it out or carry it with difficulty out.

A few days ago she ran into the kitchen with the bowl in her mouth and dropped it - on my right foot! I screamed in pain and my bull terrier mix stopped eating in shock. I turned to scream at Amber and saw her eating, blissfully unaware of the pain she had caused me.

The foot became swollen and the pain became worse. I saw an orthopaedc surgeon and had an x-ray done of the foot. I wao lucky, it was not broken. How could I have managed with my good foot in a cast? Found out that my bones, at least of that food, are rather thin. I will have o do a bone density est soon.

The moral of my storey is that if you have just one good foot, keep that foot good And yes, stay away from german shepherds, dogs that is, bearing large, heavy bowls.

Life can still be Good.

A few nights ago, I attended a family wedding dinner. The family met in the morning for a little blessing service by a priest which was meaingful to all and then a champane toast.

It had not been a good start to my day for various reasons. Then the thought of the whole day before me was just overwhelming. I had to pack all my clothes, make-up etc and take it to my brother's house where I would need help dressing. This is something most fully abled people take for granted. It takes a lot of planning for me for events such as this. I have to make sure I take all I need.It is not as f I can jump into a car and drive home for what I have forgotten. Then there is the probem of undressing when I return home. It is hard enough getting out of loose clothes. A fitted evening dress is a near impossibility. I considered sending my apologies and feigning illness, I do have a chronic illness after all. As I have done many times before, I pushed depressive thoughts of how I would manage out of my head and got going.

How glad I am that I did. The morning was great, the night wonderful. The bathroom for the disabled on the floor the dinner was on, was not working, again. It was not working on the day I attended the tasting for this dinner. Do people care you could fall without a grab bar? Not the hotel staff who were there obviously. Well, on to more pleasant things.

It is usual for me at such events to skip the pre dinner cocktails and go directly in. I then sit and wait for everyone to come in. I met people I knew well as I walked it and stayed to chat, with them then with others. A very kind soul procured a chair for me and it became that much easier.

The rest of the night flew by. I actualy danced - for all of 10 minutes but enloyed the moves of the young and not so young but able. It was a great night with great people, especialy those I love. The undressing, shower so late wss not easy but a small sacrifice to make.

The moral of all of this - life can still be good for those of us with chronic pain and disability. It can even be great!

No Choice, Choice.

I have been told that I am brave. I do appreciate that compliment. It is a compliment of the highest for it is not easy being brave. I am brave they say, for going on despite my rheumatoid arthritis and my resulting disability.

Then I think that I am accepting a compliment under false circumstances. I am not really brave. There is no choice.

I carry on, plodding away and shuffling around because I have to. I did not choose to have RA or to have this disability. If I did not have a choice where is the bravery.

Then I do have some choice don't I? I can choose to let others take care of me. It would not be dishonest for me to let them. There is the pain, at times so much. It is so very difficult I think, not often.

That would not be who I am. I cherish my independence and I must always prove that I can do it. I always thought from young that the worst thing in life is to have someone take control over you. If that ever happens, I hope and pray that my mind would not know it.

So, there is always a choice. The alternatives avaiable to you may not be the best you would have chosen but they give you choice.

There is always a choice.

World Animal Day.

October the 4th is World Animals Day. It is the feast of St francis of Assisi, the patron saint of animals and the environment on the Christian calendar. He wrote the famous "Canticle of the Creatures" a song praising all of creation including animals and praising God, the creator. He called animals his brothers and sisters.

He had a special bond with animals and loved them. Many of us also have a special bond with animals, especially with our pets. They give us the unconditional, unquestioning love that is unique.

When you have RA or any other chronic illness which lives you with disability which as a consequence leaves you alone with your pain and your thoughts for a substantial amount of time, a pet makes all the difference to your life.

All praise to our "brother and sister creatures"!

Freedom Part II.

In my last post I spoke of how I feel about my loss of freedom, with RA. It was depressing as I was feeling down, to say the least. Yes, much has been taken away from me.

Then, there is my mind. In my mind, I travel to strange lands and have the most wonderful adventures. My legs are strong and I stride over hills, down valleys. I lie next to rippling a brook and place my hand in the cool water. I look up at grapes hanging above and reach out one of my straight arms and twist off a succulent, sweet bunch. The juice drips from my mouth as I savour the sweetness. I walk down a cobbled street in Edinburgh and walk into a cafe. It is cold outside and I cup my latte with both hands. I watch the people passing outside with quiet happiness. All in my mind.

So fly in your mind even if you can only hobble with your body.

Freedom Part I.

I was watching a television show earlier and I suddenly felt this terrible sadness. I did not understand the reason for awhile. Then it struck me. I have lost so much of my freedom.

I can't dance like I want to, like I used to love to dance. I can't roll around with my dogs as I used to. I can't even get down to the floor even if my neck could take the roughhousing. I can't go out to my beautiful garden and plant organic vegetables. I can't read a book for too long anymore as my neck hurts and my arms hurt. I can't just take the car and drive to a Starbucks gor a latte. I can't go on holidays.

I need help for many things I do now. I cannot understand. I was stronger and more independent a little more than three years ago. I could walk to the shops across from my office alone, I could drive, albeit with pain. I exercise now, more than I ever did. What has happened.

I mourn this great loss. Today I feel this loss so much. Rheumatoid Arthritis, you have taken so much from me.

Mikey.

Mikey is my toy poodle. My daughter and I share his attentions. He is lying on the floor next to me while I type. Every time I get up from my chair, he gets up too, looking at me with anticipation. Poor thing, he wants to go to bed but he wont until I do.

You only get this kind of loyalty from a dog. A dog has the patience to sit and listen to you without any shore of boredom or irritation. How many times can you talk about your pain to a human being, even a family member, before eyes glaze over or that person starts feeling uncomfortable.

A dog knows no boundaries when it comes to his love for you. Mikey is prepared to wait all night if need be for me, to decide to go and sleep.

When I stumble, and I do that often, I curse and grumble at Mikey. He just looks at me and wags his tail. He knows I am not really blaming him. He is like Mary's little lamb who followed her everywhere. Mikey does that too and he looks like a little lamb.

So, if you have chronic pain like I do and need someone to show their care all the time, get a dog. I have three.

Mikey.

In the Heat of the Day and the Night.

Its been so, so warm these last two days and nights. Well its crazy hot in that it makes me crazy!

I am writing this before I bring in the two monsters a.k.a my german shepherd and my bull terrier mix. It's bad enough trying to manage two hyper dogs with RA and then having to do it in this heat. I have the RA not the dogs, if you are confused. Do you know dogs can have RA?

The air conditioning unit in the spare room (where my computers are) is blasting out cool air. Doesn't feel very cold to me. Is it the drugs? It really is uncomfortably hot. The animals are uncomfortable too, poor things.

If I could I would jump into my car and drive somewhere and have a cold cold drink. I can't can I? Another one to be added to my list of what I can't do.

I am not feeling sorry for myself. Just the heat.

Meditation and Sleep.

I have thought about doing meditation and I have been advised to do meditation.

When I first thought about it and then thereafter, it was about pain control and management. I have not yet achieved any pain management with meditation but there has been a pleasant "side effect" of my efforts.

I sleep better. Hurrah! Those with RA, chronic pain will understand how I feel. You do not sleep well when you have pain. With RA you need to move often and your body wakes to do so. Its more than that. Its the leg spasms, the pain, the anxiety about the morning. Sleeping is a problem, waking and moving is the bigger problem. You need to push yourself up and get to the bathroom, brush your teeth, then...and then.... Sometimes I think its easier not to go to bed.

However, with the some rest I am getting, things are that much more manageable. A little goes a long way for me and those like me.

I say my prayers and then I meditate for just a very few minutes before bed. Try it. Go on the internet and read about the techniques. If you are religious use the name of Jesus if you are Christian or a name of God as a mantra or focus word. Even a minute's meditation will help.

I pray that your efforts at meditation will help you as it helps me.

Stress.

Stress is bad for everyone. Stress is not recommended for those with RA or other autoimmune diseases, to put it mildly. If you suffer stress, you suffer more pain. Whether it is really increased pain or just a perception of increased pain, you still suffer.

Don't forget those flare ups. Stress can cause them. You can be caught in a vicious circle, - stress - flare up - pain - stress.

You have to fight stress. I do every day. It is my enemy and I treat it so. Try deep breathing and other relaxation methods. Meditate, even if only for 2 minutes a time.

Let go. Let go of things that cause you stress , let go of people who cause you stress, and let go of hate. Hate eats into you.

When you have RA or other chronic diseases, there are so many limitations forced on you. Pain is your constant companion. You come to realise what is and is not important in life.

Do not waste your time and energy on those who do not care or who do not try to understand. You need it for yourself. Take back your life. Get rid of that unwanted stress.

Crooked Fingers, Beautiful Music.

My piano is here and it gives me great joy. I took a few lessons eons ago and just practised and played a few tunes thereafter. What is great is that I can still remember a bit and have started playing nursery rhymes. It is a little difficult to place my fingers on the keys and keep them there.

Ok, ok, no genius here but so what? The practice helps limber up my bent, stiff RA fingers and I am doing it with all this time I have. When I play, I smile and miss my daughter a little less. When I play, I am far away in another land and I don't feel the pain.

I cannot walk fast or with any semblance of grace. When I sit and play, anyone watching and not knowing me would never think that I have any physical problems. He or she may well think what a poor pianist I am of course.

However, when I play with my crooked fingers, the music may not be great but it is beautiful to my ears.

Sadness.

A plane is lifting off right now with my daughter in it. I feel such sadness. I said goodbye on the phone a few minutes ago. I hugged her goodbye more thann 3 hours ago. I could not be at the airport to see her off because of this body of mine that has failed me. I do not want her to be sad for me. I will be alright. I am a survivor.

That is what RA has done to me. It has ravaged my body and taken many of my choices away. I will not let it ravage my soul.

I had a choice, whether to let my daughter go so far away to university or keep her here with me. I chose to let her go. I cannot run any more, I want her to fly.

RA will not defeat me.

Moans, Whines & Whinges.

Today is my day to do all of the above. I am entitled. My daughter is starting her 2nd year at The University of Edinburgh and I won't see her until Christmas. More than 3 months. I miss her so much when she is away and we quarrel a lot when she is home. I think I start to think about her leaving again whenever she is back. She leaves tomorrow.

I have beeen suffering from vertigo, saw the E.N.T. surgeon last night and he diagnosed it as benign postural inbalance. Its caused by some calcification as a result of accident trauma or, ye, rheumathoid arthritis.

Everything aches. Today is my day to indulge in my pain (not all physical). Tomorrow, I will be be strong and say goodbye to my daughter.

Puff the Magic Steriods.

One, two, three, Boom! That's the sound of the steriod explosion. Do I sound loony? It must be the steriods.

Yes, I am back on steriods, sob sob. Was that a voluntary act, done without coercion and undue influence? Just the gentle persuasion of my kind rheumatologist. After my last encounter with steriods, I puffed up like a puffer fish. Took me so long to get to my now svelte 40kilos, 88 pounds for the non metric people. But then I had vasculitis and was on long term high steriods. This time, it is only for four weeks. The problem with a flare up and steriods is that you have to be careful with the exercise. I was told, " just continue with your stretches".

You know what steriods can do. I'll chant the litany - damage organs, thin bones, affect moods...
You do know that I am talking about cathabolic steriods not that body building "roid rage" anabolic steriods.

The thing about my kind of steriods is that it cuts the inflammation and thus pain, so quickly that some come to like it too much and can't stop or reduce the dosage even when they are told so by their doctors. You can't really blame them. When you have known such pain, the relief given by steriods is bliss.

Whatever the problems, steriods are important for any inflammation.

That's why I still love my magic steriods - at times!

Pain : Part III - The Power of Pain.

No, I did not type incorrectly as I am wont to do and its not about the power of love. We will leave Ms Carey to do that.

Masochists - stop reading! There is no S & M here.

Pain does give you power in a strange way. It gives you the power to understand, it gives you the power to empathise, it gives you the power to strengthen yourself and it gives you the power to make it all meaningful.

When you have experienced severe pain, you come to be more understanding about the pain of others. You are not so quick to criticise someone who suffers from migraine for instance. You learn to empathise with anyone who suffers from pain, physical or emotional. It is not about everyone whining and.whingeing, it is about the deepest understanding of another's pain. You rise up out of the deepest depths of your agony to be stronger.

How does it all become meaningful? If you try, try and try, you emerge a stronger person with the power to do and be all I have said above.

But why me? Why so much pain? Well , maybe it is so you can use the pain to get that power.

Its not so easy to think this and be that when you are in so much pain. Take the time to think about it on a day the pain is not so bad. Perhaps it will not feel so bad when it does come back to coil around you. It will not be able to crush you.

"Upbeat it".

Today I was asked my reason for starting this blog and I was told that it was a bit gloomy.

Well I started this blog to share my life with RA in the hope that some with RA and/or chronic pain would get some comfort, some hope and laughter out of visiting it. I know what pain is, I know the feelings of frustration and anger at the limitations forced on you. There is always someone else worse off.

Its not all gloom and doom. I know too that life can and will be better.

So let's Upbeat It.

In the quiet of the night.

Its almost 2am and I am the only one (man or beast) awake, I think. I am sitting at my laptop contemplating life and my fingers. They are rather bent and stiff, my fingers that is. I still love them. They enable me to sit here, type and communicate with others through the wonder of the internet. My brain helps a bit, of course. Surprisingly, I am not sleepy and I serene.

In the quiet of the night, I ponder on how being alone is not being lonely. Oh, its so important to know this especially if you are suffering from an incurable disease,pain or your problems are crushing you.. This is the perfect time to look inwards, to think about life and your life. This is the perfect time to talk to God and know that it all means something though you may not know the meaning now. This is the perfect time to commune with the One who is always with you.

In the quiet of the night, I pray.

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"!

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.

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.

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.

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.

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.

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!

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!

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.

Morning moans

Ow ow ow, my morning wake up song. Dragged myself off my bed and shuffled to the bathroom. Feel like a puppet on a string. My daily dance begins. I pray, I curse, I sing.

My life can be all about pain but I refuse to allow that. I fight, I wrestle with the RA snake that wraps around me, suffocates and tries to bring me down. I will not give up. I dance with him.

If you suffer from rheumatoid arthritis or just have pain, lets share. We are the only ones who really know what's it like, the frustrations, the limitations, the pity we have to endure. We can whine, we can cry with each other.Tell me how you really feel. I will listen.