Hi everyone!. Seen the rhuemy again, sulfa to add to the list, and one of the latest scribblings for all of you.

[Jetblack]

Hi everyone,

It has been a while, and i thought i would catch up and see how you are. For me, had to have the mtx lowered to 10mg the drug caused too much for me to tolerate, the folic acid was increased, but i have had one bad flare after another and it has gone to my ankles, shoulders, feet, knees and hips so tin man reporting in. I saw the rhuemy again on Thursday, a steroid injection, oh thank god for those. and put on sulfralaizine, although i am on antibiotics at the moment, so will start those when i have finsihed them. Goin through all the benefit changes at the moment as well, so waiting for the dreaded questionnaire. Stress sure is not good for RA!

The book is with the proof readers so hopefully will hear when it is due to come out so i will let you guys know. Have managed to keep the pen busy, thank god for speech software for the computer, so when i have not been able to write, i can talk instead.

So this is the one i wrote today.

Rhuematoid Arthritis. R.A.

In January 2012 I was diagnosed with a chronic, progressive can be disabling auto immune disease called R.A.

This disease varies differently from day to day

Some days are so painful, it reduces me to tears

When I was diagnosed with this - I was full of fears

People need to know what R.A. is like

Every day a battle from morning through to night

This is called and auto immune disease

Not a wear and tear arthritis - they are different if you please

Our immune systems attack the lining of our joints

We can feel completely exhausted, and wonder what's the point

It can affect any joint at any given time

It can happen to anyone at any age is what you will find

We have doctors called Rheumatologists

At times other people called physio terrorists

There is such a team involved with every one of us

We would rather live our life with very little fuss

We know when we are having bad times when they are called a flare

Our joints become inflamed and hot, who said life was fair?

We can become stiff and painful almost overnight

I call myself the "tin man" , oh we are then such a sight

We have the medication, the dmardrugs

We take a lot of meds so we can raise our shoulders and shrug

There is methotrextrate, that is a chemo med

Everytime i take it, it puts me straight in bed

It makes me feel so tired, and puts me on the loo

Then you take folic acid, more than one or two

There is a drug called "Plaquenil, it can affect your sight

We just wish we did not have this, rather than battling this fight

We have lots of meds and steroids too

We are not allowed long term steroids, sometimes, it's make do

It puts our friends and family through so very much

They are the unsung hereos, the ones we really trust

Without the friends and family how do we all go on?

They are the ones who give us courage and say come on be strong

We have the bi-weekly blood test to check our inflamation and disease activity levels out

Sometimes the sheer frustration of lack of independence makes us scream and shout

It can be so bad that then we need an op

It can make us angry and irritable, and we can throw a strop

We have issues with every little thing

But we all know we have to battle this, for we can never give in

It affects our memory and concentration too

It affects our organs and lungs and lowers life expectancy for you

The food we eat plays such a part in how we feel

When we see our hands and feet and body swelling then you know its real

Most of the symptoms hide right deep inside

You may think we're well, the pain is there, it hides

We can't show we're tired, or we're sick of it

But you'll know we are upset when we throw an angry fit

It makes us think twice before we do anything

Some days you can do stuff, the next day you're done in

But everyone is different with this-its so very true

But I beleive we can have a life - and we can make it through

I am only at the start of this, others have battled years

The future so uncertain, hey we all share those fears

I will not give in to it, and I will meet it head on

For all those who suffer this disease, keep battling, be strong

The scientists one day may find a miracle cure

That is the hope i cling to, what i cling to for sure

For everyone suffering this horrible auto immune disease

I send lots of love and hugs and pray for you some ease

Rheumatoid Arthritis is an auto immune disease. This disease affects everyone at any age. No one is immune from R.A. Let's raise awareness. Thanks for reading. My prayers are with you all and your family and friends. Together lets raise awareness of RA and pray that one day they find a cure. xxxxxx

[Hidden]

Hi Jetblack,

Good scribblings, it's the first thing I've read this morning.

I've not been diagnosed long and am no where near as badly affected as some of the people on here, even so, life has certainly changed.

Look forward to more scribblings.

Mary

[Jetblack in reply to Hidden]

Hi Mary

Thanks for your comments, life has certainly changed, am thinking of you and sending lots of hugs. Am due to have the book published soon, it helps raise awareness of this disease or someone gets diagnosed early enough that they do not have as many problems in the future it will be worth it, hang on in there and take care. x Paula x

[aligator]

Hi Jetblack, Those words said it all, thank you. Will look forward to reading more. Take care of yourself.

Love Alison

[Jetblack in reply to aligator]

Hi Alison,

Thanks for your comments, hope you hanging in there as much as you can, there are others i have written on here if you check under the blog posts with jetblack there are some others. I am carrying on writing, on lots of things, am learning with RA as well, so writing a lot about that at the moment, hopefully will know soon when the book is due to come out, well let you guys know when it does. Take care Alison, Paula x

[asasmum]

Hello Jetblack!

I havent felt able to contribute for so long due to suffering physically and emotionally, and with difficult to accept IHR also in process, but I woke up and read your words and they inspire me. You really have some insight. I want the world to know there are those with RA who are really struggling despite no bandages or amputations.THANK YOU FOR DESCRIBING IT SO WELL.We all look forward to the next one.

Take care of yourself

Asa's mum xx

[Jetblack in reply to asasmum]

Hi,

My thoughts and prayers are with you, sending a hug to you as well.

I have written some others under my blog posts as well, they are not just about RA though. So have a look under my name and you may see some of them. Thanks for your comments they mean a lot, take care Paula x

[Gina_K]

Well done JB,

Good poem, very passionate. Probably very therapeutic for you I guess.

Have a happy Sunday,

Gina.

[Jetblack in reply to Gina_K]

Hi Gina,

Hope you are as well as you can be. If by what i write someone out there understands the stuggles and battles with RA and how it affects us then a good thing, awareness is importannt with this. Yes, it helps me come to understand it too, i have not had the illness long, but if someone gets help from something like this and this amazing site, it means they may not have to go through all thecrap further down the line. Take care Gina. x Paula x

[Gina_K in reply to Jetblack]

That is exactly how I feel about it too. The very fact that it exists proves that there is a lack of support & understanding.

[watson3]

A brilliant example and explanation of RA. RECENTLY DIAGNOSED myself and appreciate your poetic lines. Look forward to your next exercise. Thank-you!

[Jetblack in reply to watson3]

Hi Watson,

Thanks for your comments they are greatly appreciated, I was only diagnosed my self in the last six months, so i have a lot to learn as well. I send a hug your way, you must be wondering which way is up. you can always send me a message of you want to chat. There are others on here under my profile name under the blogs if you want to have a loook. Take care and hang on in there. Paula x

[watson3 in reply to Jetblack]

Thanks for your reply. Had an injection of steriod on Friday.. need to increase my metho tonight. Not looking forward to the side effects to the side effects of 20mgs. Keeping busy to keep my mind off my painful hands and wrists. A hug received with thanx and returned at my pleasure.

[Jetblack]

Hi watson am thinking of you with the increase with the mtx, just saw earlier posts where in stafforshire they cannot get steroid injections and the pct are stopping them for them in the back. We are very fortunate that we can get one, i feel for all of them that cant' Sad sad sad times, Take care and a hug to you,

[gaspajack]

hi Jetblack i have just come back today from my visit to the rheumy nurse hope yours are better than mine anyhow sulphasalazine my consultant had me on that and 20mg,s of methotrexate a was absoluteley ill with both its a slow build up with the sulpha but managed to get up to 4 per day and just couldnt take anymore felling and being sick so i knocked it on the head this was frowned upon by the rheumy nurse and the doc both said i should of persevered with both yer right lol well back to methotrexate nd pain killers again so good luck with yours i hope they both work for you as they are a good combo

regards gary (clapped out at 45)

[Jetblack in reply to gaspajack]

Is the mtx with me it makes me feel so sick, hang in there and sending you a gentle hug and keep you updated, cheers!

[helixhelix]

Hi, another meaningful poem. Thanks. Hope the new meds work for you. I'm on 5 tabs a day of sulpha ( on top of the MTX & hydroxy) and I find it ok. Made me feel a bit odd and sick for the first few weeks, but generally ok now. Pollyx

[Jetblack]

Hi Polly, Thanks for the feedback on the meds, be interested to see how it affects me. The mtx is bad enough for me that it had to be lowered. Hang in there Polly and take care. x

[Hidden]

Great poem xx