What a waste of time..............

[sylvi]

Just got back from the hospital,and no one told me to get a blood test before i went today. So i have now had the blood test done and i have to go back thursday. THis is becoming a farce as far as i am concerned,i am so fed up with my health at the moment,what with my hearing loss and having to have a new hearing aid and also i have to go and see the ENT department as well now. I just feel my body is letting me down big time. I also enquired at the sleep apnea clinic as to why i hadn't heard anything from them and it turns out that my dr has had the report since may and i don't have sleep apnea,but i have to make lifestyle changes eg; lose weight. God how do they suppose i do that!!!! I am trying to lose weight,but it is a never ending task that never gets very far what with all the drugs i push down my throat and the ra/fibro as well. I am begining to think i might as well give up,(no i won't i just feel so down today) Give me a couple of days and i know i will fight back,but today i am so disheartened.

[Caza]

Ah sylvi,I'm sorry to hear that your being messed about. It does seem to be part of the course,well for me it certainly is. You are a fighter & a cheerful one at that,take a rest today & come back with vengeance tomorrow. Hope you get some answers on Thursday. Take care x

[Hidden]

Feel for you Sylvie. You seem to be going through so much at the moment. At least you haven't got to wait for too long for another appointment.

Good luck for Thursday and I hope everything goes smoothly.

Love

Carolyn xxx

[Hidden]

Sounds like one step forward to steps back. You really don't deserve this keep your chin up, wallow today and tomorrow fight! Will message you later to see how your going. Take care my friend gentle hugs xxx

[sylvi in reply to Hidden]

I went to bedworth and ended up with a lovely new PINK handbag,that does it foe me. I have posted your letter this morning.xxx

[allanah]

Aw its disappointing isnt it after building your hopes up, hope you get the results soon xx

[dtech]

It does seem like 1 step forward and 2 steps back sometimes. And as for the so called ' joined up thinking' of our good ol' NHS system, don't get me started on that!! But stay strong and keep battling! The RA army ( that's us) are with you.

[miss]

Hun keep your chin up. Don't we all just love the NHS!!!!!!!! XXX

[Neverwell]

Keep your chin up hope you get sorted soon xxx

[sylvi]

Thank you lovely people,what would i do without you all to cheer me up. I went to bedworth and did a bit of shopping and ended up with a lovely new PINK handbag which always cheers me up.xxxx

[petalnumber2]

You are always an inspiration to all of us even though you've been having such a bad time of it lately. We are here for you Sylvie, and I'm glad to hear your little pink bag has given you a lift.

Are the blood tests part of the criteria for your Anti-Tnf injections, or have you already started on your treatment ? Anyway, I hope the blood results are good and your appointment on Thursday goes well. You deserve a break my lovely, big hugs. June xxx

[sylvi in reply to petalnumber2]

Blood test are part of the treatment and on thursday i will be getting the cimzia. I feel brighter than i did this morning thank heavens,it knocked me sideways to be honest.xxx

[petalnumber2 in reply to sylvi]

Glad to hear you are feeling a bit brighter and it's great that you are about to start on Cimzia. This week I will be having my 10th Enbrel injection and I am beginning to feel the benefits, but it's early days so my GP says. I am hardly stiff at all in the mornings and some days I am almost pain free. So, I hope that your cimzia will have the same benefits for you, and give your body a bit of a break.

Glad to hear you do not have sleep apnea, it was a bit short sighted of your Doc not to let you know, my Ian has just been tested for it and he doesn't have it either I'm pleased to say. Take care Sylvie and let us know how Thursday's appointment went. June x

[Dandan]

Keep you chin up Sylvi, we Need you xxx

[Case]

Dear Sylvi,

Poor u, it's ok to have a bad day. It's hard to always keep positive when your body thinks otherwise, some people just don't get what a physical something trivial to them is for people like us. U did well to go out and do some retail therapy.

I shall be having my first cimza jab on thurs, we can exchange progress reports!

Hope u have a good response.

Take care.

[joem]

Sylvie, what hosp do you go too, I was in Bedworth on Sunday I go. To the George Eliot hosp xx

[sylvi in reply to joem]

I do both the eliot and walsgrave. The comzia can only be done at walsgrave, so it was walsgrave today. Where do you live then if you were in bedworth on sunday? xxx

[Mumoftwin17]

Ahh...sorry to hear your feeling a bit down ATM...(.know how you feel !!).....But Thursday is "THE DAY!"...Im sure all will go well for you......fingers crossed...Its a big one for me cos at last I will get my first appointment with my Rheumatologist (After waiting 5months!!)...YAyyyyyyyy!!!!......tho I hada vist to A &E ..diagnosed with Gallstones.....so I know what you mean....when u say your body is letting u down!!.....more pain....more pills .....more ops!!

BUT THURSDAYS THE DAY!!!!!!!!!!!!!!!!!!

keep your pecker up!

Wendxx

[sylvi in reply to Mumoftwin17]

Thanks for that,it looks like we will both have d-day then,you will have to let me know how you get on.xxxxxx

[craftygal]

So sorry to hear everything happens at once Sylvi. Feel for you my friend. Lets hope you have a better day tomorrow. These things are sent to test us. We're all behind you. Thinking of you. Gentle hugs. Irene xx

[joem]

hope youre feeling better today sylvi, i live in atherstone, i grew up in hinckley, apparently the new rhuemy at GE is nice? m still waiting for my app, my friend did say that shes met her and shes got to go for all new xrays and bloods etc. sort of start over from scratch, xx

[sylvi in reply to joem]

Clare is wonderful and when you see her tell that you have contact with sylvia reynolds,she will know who i am. She is very knowledgeable about her subject and she has great compassion. She has been there for me when i have had bad spells and she never judges.If you want to contact me inbox me and i will give you my phone no.xx

[Hidden]

Dear Sylvi,

So sorry to hear the awlful NHS is letting you down.. im not going any were fast.

No letter from consultant from june 3rd still

[sylvi in reply to Hidden]

Oh my friend you are having a time of it aren't you,i wish i could wave a magic wand and make your life easier for you. Perhaps you might want to have a word with the people at PALS and see if they can move things along for you.

My nurse did try to ring me and she did apologise to me which is nice of her. I feel better now than i did when i wrote this blog and i got a new handbag which went a long way to ease my mind.xxx

[Hidden]

Morning Silivi,

I'm glad your pink handbag cheered you p, handbags always cheer me up too, shoes used to ore RA to when I could wear anything ??

I'm confused why do you need a blood test before cimzes? And do you have to go to the hospital every two weeks to get your dose/injections?

I've recently been on cimzea ( I was taken off it as they think it could have been the reason my uveitis flared again)

However I didn't need a blood test before, just my standard monthly monitoring for mthx, and checking ESR, CRP, oh and I think they added a cholesterol test into the one pre cimzea, maybe that's what you had done?

Also I did my cimzea at home Bupa nurse came out to check I was ok doing first two doses but then I was left too it.

[sylvi in reply to Hidden]

The first three will be given in hospital and then i will be given a prescription to do ti at home. Had they given me a blood form i would have had it done,they forgot to give me any forms hence i had to ahve another test done on tuesday. Never mind as long as the bloods don't show anything wrong with me i will be ok.xxx

[Hidden in reply to sylvi]

Oh well I suppose three visits isn't to bad, like I said Bupa Nurse came out watched me do my first two, and then after that I did them myself at home, I didn't get an actual prescription either Bupa delivered them every three months, much easier, but I suppose all areas do things differently.

Was it the cholesterol they were testing for in your bloods?

I was told they test it not to see if its high before but so they know what it is before because cimzea can raise the cholesterol levels so they check before and a few times after, I was also told if it was high I may have to go on medication for it, but luckily mine wasn't.

[sylvi in reply to Hidden]

Just the normal tests i think. To be honest i didn't ask,i was too upset.xxx

[Hidden in reply to sylvi]

??

Aww I don't blame you x

?? Crossing my fingers for you all goes to plan tomorrow xxx

??

[Hidden]

The ??? We're little icons smily face, fingers crossed and hearts they obviously don't work on here :/