Hi all, hope you are all hanging in there, thinking of you all, Where am I? Feeling very tied latey, i can't sleep god knows why. The steroid injection has worn off, they never last long with me, so the hands have decided we are not playing ball with you at the moment Paula, oh well, life goes on, and so does the love of chocolate.
Have been busy writing where I can, the book is at the proof readers, it went off over a week ago, 35 pieces went off in the book, am knackered, so see what happens with it. I have had so many collywobbles with it, anxiety etc, am i doing the right thing, etc etc, took such a risk sharing anything, most of it was just how I was feeling at the time, and then get them down and destroy most of them. Just feel wide open and vulnerable about it all, I have never done anything like this, and just think he has made a mistake and he will send it all back and say you are crap who will want to read you? In regards to the RA the painkillers have been upped tramadol upped 4 times a day, so I play night of the living dead mostly during the day, and I wonder when my periods will return because after 10 weeks of mtx they have stopped. Completely, If anyone else knows of this please tell me as I am getting scared. Due to see the rhumy again on 17th May she wants to try sulfazine trouble is with the mtx I am already on, and then Lithium I think my body is saying toxic alert.
I wrote something an hour ago and wanted to share it with you.
Why
I wish I didn't feel this way
I wish I could get through the day
I have had enough of pain
I am sick of the rain.
Why won't my fingers work?
Where does the tiredness lurk?
Why are my joints so hot?
I am shattered, I've had my lot.
Why can't I get out of bed?
Why are my fingers red?
Why can't I concentrate?
Why am I in a state?
Why do I sit and cry?
Why do I ask you why?
Can you see the pain I'm in?
Can I do this, can I win?
Why do I have to pace each day?
Why can't I wish RA away?
What does the future hold in store?
What if I can't take no more?
Why do I need the help?
Why can't I do it myself?
How do I make it through?
What am I supposed to do?
Why can't I have a steroid jab?
How do I control the steroid flab?
Why does it affect my eyes?
Why are there so many whys?
How did this happen to me?
What am I supposed to be?
Does anyone out there care?
Why is life so unfair?
For most of these there are no answers. That's R.A.
Copyright. Paula.x
Take care all of you, that's me. xx
Written by
Jetblack
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Paula, the poem is soo sad and it is very good. It is true of so many of us. Don't worry about the book people not liking it,it will turn out very well,you are a good poet and don't you forget it.
I wish i could take your pain away, we all on here sadly do know what your going through.
Hi Sylvi, I so love your hair, it looks amazing, love it, the poen I think reflected the pain I was in and how lonely the pain can be, I know you guys will understand that. If I meet one more person who says, oh you are young to have that, it is an old person's disease. Where are you arthritic, I will scream. It is an auto immune disease, Because they cannot see our pain, doesn't mean to say we don't have it, or we are extremely tired or really down or so irritable we can commit murder. Hang on in there you are one brave woman and you are such an inspiration to me and so many others. sending you the biggest hug in the world and a huge hug. Say hi to bob. Take care sweetie Paula xx
Sorry you are feeling so low Paula. I'm feeling much the same as you - my whole body has gone into flare and I'm getting grief from my OH for being too miserable and bringing the family down with me. Oh dear - poor you, poor me, poor our families for having to put up with it all with us etc etc. TTxx
I feel for you more than me, you are going through lot, you are my warrior artist, hang in there, and sending you as many hugs as i can, anytime you need to chat, am here for you, you take care up there, thinking of you Paula xx
So sorry to hear off your pain, love your poem you write so well.
As for the periods I'm three years on methotrexate now and no sign off them, I'm only 34 so too early for menopause.
Hi Julie, Thanks for the info on the periods of mtx, I know the feeling with the meds because my rhumy doctor when I had a rash said it was due to the other meds I was on and the mtx, I ended up at em doc because of the mtx, then she got stroppy and said stop taking it then. Hang on in there, and fighting the fight with you, hugs to you and take care. Paula x
Great Poem.. Yes MTX can affect peroids unfortunately, I woke up with bad hands too, but I had booked today off work as leave . Hope you feel better soon x
Thanks for sharing your poem. Hope the fog lifts for you soon. Talk to your doc re the toxic load, but at least with RA we are well monitored through blood tests, which helps manage the risk of too many drugs. And it may be that the extra drug would turn things round for you.
Hope you are hanging in there, have talked to the doctors about all the meds, and unfortunately I cannot come off the Lithium, it would put me in hospital quicker than that, and the rhumy dr is thinking of sulfazine to add to the list. I am being monitored very closely by all with the bloods, I just wish my GP did blood tests, but that is money realted for them I think. I am clinging on to the hope sulfazine might do the job, so I am not giving up, I cling to hope in all this mess. Hang in there and take care Polly, Paula x
Hi Jetblack, I so loved your poem, it made me cry because I feel so alone and I know in my heart that is not true but to see it so graphically written by someone who is going through it helps a lot. I hope your book is published soon.
I have had RA for 18 yrs. and am SO tired partly I think, bacause I may be hypothyroid as well.
Have you asked you consultant to consider you for the new biologics. I think they can be prescribed when 1st line treatments are not succesful. I couldn't have them because of lung disease.
My hands are clawed and I can only type with my rt. index finger and the nail of my thumb, so I am interested in what soft ware you use to "talk to your computer"
I have a programme on my computer but it is useless and refuses to be "trained"
Mary had a little lamb came out as Mary had a can of ham
Thanks for your comments, Oh I did n't mean to make you cry, I will look the name up of the software and let you know, it is my life line at the moment when I can't sleep I am writing well speak writing. You hang on in there sweetie, and thinking of you and sending a hug your way. Paula x
Paula, You have a great talent! Being able to put thoughts and feelings into words, in a poetic fashion is a God-given talent. If you can, try to dwell on the positive side and continue to write, it will help put the negatives in the background.
And , oh yes, people will read those writings, and relate to them and crave even more of your words. as the song goes: "this could be the start of something good" !
The trouble is with me I am dealing with R.A then Bi Polar and the two illnesses collide, they were battling with supermacy last night, but sometimes when I am feeling down some stuff comes out that needs to be put down. For me, it was questions. I suppose because it is early days, it is a mixture of postives and negatives and swings and roundabouts. I am trying to stay focused, and be open minded that one form of medication of another may work, hope you are recovering from your op Loret, sending caring thoughts states side to you, hang in there. Paula x
Thanks Paula, You're still talented, no matter why, or what the inspiration I have a very dear, bi-polar friend, and she sure doesn't write poetry.
Good luck with the Publishers! Closest I've come is I have a poem written to my Grandaughter for her first Christmas. She is now 22, and still the same little girl I thought she'd be that long ago. Someday I'll post the poem here. For now, just take each day as it comes. Loret
s: I am doing well, just typed this with both hands!
That is what keeps me going, tomorrow is another day, you guys are my inspiration. I wait to raise awareness of this illness so that someone out there recognises the symptoms earlier and gets the help, hang in there allanah, thoughts are with you, hugs. Paula x
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