The Box

Sometimes, I feel as if I am in a box. The box keeps me in. At times it expands, allowing me room to stretch and not feel hemmed in. The box has holes which are my windows to the outside. I see the abundant green foliage and smell the wet grass and the rain when those windows when those windows open wide when my box grows tall and large.I see the birds and hear their songs. Life is still sweet. I sigh with contentment. At times it closes in and I find it hard to breathe. I push against its top and sides but they will not move. I despair. I stop pushing. I take a deep breath and pray and think. My body is trapped but my soul can fly.

A Twist of a Different Kind.

Have not posted for almosted a year. Life overwhelms you sometimes and when you have a nuisance of a chronic illness, there can even be an avalanche which buries you. Sometimes, you just want to crawl into yourself, tucking your head in like a tortoise, lifting your head ever so often for necessary interactions. You can function quite effectively in such a mode, you would be surprised.

I have managed my legal work rather well and my pets are not neglected. My daughter is more away than here. I have actually done some writing. Have completed two short stories but am mentally and emotionally blocked on my third. Thinking of putting that on hold and starting something new.

My rheumatologist and I have been rather pleased at how my RA has come under control I am down to one Arava a week. I managed to reduce painkillers to nil. Have wriiten before about my efforts at meditation.

The problem with my eyes have gone worse however with redness, swelling and pain almost fortnightly. Then my face appeared to be swollen frequently. At times, it was due to the damage to my jaw when I had a bit of a problem with chewing and even talking because of the constriction. Nothing however, will ever stop me from talking entirely - that you can be sure!

Then there was/is this swelling particularly under my right jaw. I did not put on the weight that could explain a double chin, and a one sided one at that. I may have a physical disability, have less than beautiful feet but I am vain. RA does not define me. I want to feel and look as good as I can. When you lose control over many aspects of your life, you cherish all the more, those remaining to you. Saw an ENT guy an opthamologist. Its my salivary gland that is causing that lump. Tried antibiotics as the first course of treatment as it may be an infection. After 10 days, the lump is reduced but not gone. The eyes are ok now. Put 2 and 2 together, read up on the internet and wonder if it is "Djorgen's Syndrome". Its an autoimmune disease which can also affect RA sufferers.

Will know tomorrow when I see my rheumatologist and get my blood tested. It is always a so 'pleasant' affair. Please cooperate veins!

In Part 2 of the plot, things just get worse. I will give the quick version. My daughter was threatened by a cowardly thug who blocked her car, refused to let her leave and tried to extort money from her. He damaged the car and its costing rather a bit to repair/replace. Went with her and a witness to the police station for a report to be made and both were interviewed by the inspector. This took more than 5 hours. It would not have been very pleasant for anyone, it was not for me. Walking to the car with the help of the friend, my 'good' foot twisted on itself on the very uneven surface. I pride myself on not screaming out loud. It would have caused not a few cops to come running. It was painful and that is an understatement. My jaw was clenched so tightly that it began to hurt too. Fast forward to the next day at the hospital when an xray showed that I had a fracture of the proximal phlanx of the big toe. The foot was swollen and bruised and the xray also showed the changes caused by RA. A fracture of a toe joint may not be a big deal but try it with RA and a lot of mechanical damage.

My twisting my foot has put my twist dance exercise on hold. I am not happy.

Ramblings I

Its been quite awhile since I last posted. I just reread my last post and the typos! The word is "blooming" not "blooing" BTW.

Other matters have taken my attention. A family wedding I was looking forward to and actually helped with, with my daughter. My daughter being here for the long summer holidays. Thinking about my career, things to do. Then there are those so addictive facebook games. When you are rather immobile, your computer is your communication lifeline. At night time spent not sleeping is spent on my computer. Anyone want to be my friend on "frontierviille" ? I harvest my crops at such a great speed in my virtual homestead but am still trying to grow a vegetable in my actual garden. Oh well. I must go back to playing "lexulous. No, that's not a facebook game. Try it, it keeps the brain exercised and you "meet" people from all over the world. When I chat while playing, I lose as these lovely fingers of mine refuse to cooperate.

My daughter will leaving soon for university and I will have to do all that she does now, feeding the animals, making coffee and a lot more. The feet will swell, there will be more pain but it will distract me from missing her. Must take up salsa dance classes - now where do I find a teacher?

Any new RA pain? The blasted disease is now causing me problems in my left shoulder. It seems exercise wont help much and hurts as I have found out to my dismay. A few days and arcoxia and its much btter. My poor daughter has been suffering longer, had to have a couple of wisdom teeth removed and ended up with a mouthful of ulcers. I have comfored her telling her that that pain, however bad, will end.

Anyone who is suffering from pain and wants empathy, come to me.

A Survivor.

Not a good day for me. The last few days have not been good days. My daughter left on the 11th, my sister and her son yesterday, but I try to be positive. The pain doesn't help. My feet feel as if they are on fire and just hurt. My left is giving problems again. I am not sure why. It has been totally replaced. Then there are those continuos headaches. Am quite sure its my neck that is causing them. I stumble around just being a grouch. My blooing jonts. My blooing RA!

Ok, enough of the whining. Whining and whingeing do not help. It would help to talk to somebody but my family have their own prolems, their own pains. I look down at Mikey, my poodle and he looks up at me with uttter trust and love. That helps, believe you me. Having my animals aroung, those beings who love me unconditionally, has helped me and continues to help me. Anyone who says animals don't feel real love for us, is a moron or has never had a pet or has never looked at an animal as anything but property, a commodity. If you look at an animal as a commodity, it makes it easier for you to ignore its suffering and pain and pretend it does not feel.

I force myself on my stationary bike, even 3 minutes of exercise helps. I push myself. Sitting down and doing nothing does not ease the pain, that is the thing about RA. It challenges you to move and keep busy. I am distracted from the pain when i talk to someone, when give advice, when I laugh at the antics of my hyper active german shepherd, Amber.

When I first wake up, life seems torturous and all I think off is the overwhelming pain. A few hours later, I know I will be okay. Iam a survivor!

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.