Does anyone else ever feel that all you seem to be doing is waiting!
Waiting for surgery
Waiting to start a new treatment
Waiting for that treatment to kick in
Waiting for side effects
Waiting for appointments
Waiting for blood test results
I just seem to be spending my life waiting & to be honest I'm bloody fed up of waiting & then when I do manage to get the slightest chance of the waiting to end then it gets postponed & you wait all over again 😴😪😷
I hear ya babe!
What are you waiting for atm?
It does settle and ease off, the whole apmnt, meds, waiting waiting, waiting thing once your stable. But I get it totally, waiting is a bi*ch!
I'm currently waiting for a letter to drop, with an apmnt, which will tell me how long more to wait for seeing Doc, which will then tell me how long to wait before I can get back on the right Biologic. Which incidentally I was happily taking for couple years till they dropped a letter, that one said, I'm going to be switching you to another biologic, which happened, and royally messed up my treatment, boohoo lol!
Hey I know....lets wait an see what happens next 
D
Hi Deminem
Sounds like your in a similar situation to me.
I've been on Tocizilumab for three years after failing on most biologics. It drops my neutrophils really low so I've spent more time in hospital over the past 12 months. Anyhow I had a high heart rate (157) at one point so they stopped treatment at Easter whilst we waited for a cardioligy appointment, which took until June to be seen. Then i was waiting for results which was another 6 weeks. Then my neurologist wants to further operate on my neck but won't do it until I've been back to cardiology because there was something wrong on my scan. So I'm waiting for my appointment which is not until 20th September.
I'm literally surviving on steroid injections and morphine. God only knows how long it will be before I'm back on a new biologic & then more waiting for it to work! You're right life is a b**ch. It's like being stuck on a rollercoaster..
What made them swap your biologic if it was working for you? 🤔I sometimes wonder if the specialists even know what their doing😁.
Lots of love D xxx
Oh wow,
Sorry you've been having such an awful time, that really is a pickle your in.
I sincerely hope you can be fixed up sooner rather than later. Can you shout a little louder in the right ears and get things moving more quickly? You've probably tried that I know.
I was ticking over nicely on Enbrel, then the cheaper new kid(biologic)on the block came along, Benepali. I was switched via a letter, bcz it's a cheaper med, cost £15 less a week than Enbrel, and for the past 5 or so months on it it's proven to be ineffective for me. Brought me back to square one with my AS, grrrr. Anyway I'm more worried about you now 
so I'm not complaining!
Hope they can hook you up soon huni!
D
Me too the waiting game for this specialist and for that specialist. I go between 2 hospitals which are going to join up to be one trust which will possibly happen next April.
Yep!!
I thought they could not switch you to Biosimilars ! That Biosimilars will be for those who have not yet started Biologics.
I would have a serious fit. If I found something that worked and someone took it from me.
Not unlike a nurse rushing infusions to meet some scheduling need.
My health plans cover my drugs but it is my body they are experimenting on.
I think they get upset that the drugs have not worked for me. No incentive to continue. With the kind of money they make that is bad for them.
When you consider how many are affected you should consider who is representing us. Who are deciding on protocols etc.
Great big hug! I do know what you mean. All I 'try to do' is distract myself or my mind kicks in and starting bothering me as I'm waiting! My mind really likes doing that in the middle of the night!
A friend sent be a free to download audiobook. The other night my ears listened to it for three hours! No idea what it was about as I slept through it. I reckon my mind was boggled by it and gave in with exhaustion!
I'm waiting for my next lung function test. I don't mind doing it but I really don't want to know the results. I suggested to my husband he goes and finds out and no matter what the news is, he comes back and says it's fine!
I think I need to look up information on meditation as I think it would help me.... and my mind xx
PS I loved how expressive your feelings are with regard to 'bloody fed up of waiting'! My sentiments exactly!
I'm playing the waiting game as well, stuck on steriods whilst waiting - not ideal but no choice! Patience has never been my strong point but trying to learn!
I feel like I might as well live at the hospital as I'm always there. It's ridiculous. I put all the appointments on my calendar but nick name it the doctor.
I have got so fed up of waiting and missing out on things that I book a holiday and they will have to fit in with my plans.
I feel much better reading your post today because I feel exactly the same, I have been waiting to start my treatment and now I have a infection and it's been postponed 😡😡😡 x. Chin up
I have a pretty good Rheumatology team so I can't complain about the help they give me. Yet like you I'm frustrated that everything takes so much time - I've been struggling for well over a year now and just one reason after another can't quite get back on track - just waiting to hear if my test results are ok to start another biologic. Twelve years of RA takes its toll mentally, but oh how much we cherish those better moments!
Got to agree 100% same all same all. Can hardly plan anything without looking at the callander to see what excitement awaits you .
The only time I leave the house is for appointments! I was diagnosed in 2011 at 37 years old. I now feel like I'm in my 70's. If it wasn't for the marvellous support of my husband & family I dread to think what I would have done. Sometimes when my pains high & my moods low i scare myself with the thoughts i have xx
Waiting is being passive. When it is your health and wellbeing it is about you need not hand everything over to the professionals.You are the expert on your body and it's reactions. There are a lot of things that you can have an influence on and be active about. Being passive and frustrated is not a good possition to be in.Hope you find a way to be more in control😊
YES! I have spent the last seven years in and out of surgeries and procedures. Now I am just waiting to someday feel better!
Apologies off topic query re elderly parent. Feeling helpless stuck so far away
pain with no swelling
I can’t get a rheumatoid referral
Post knee replacement (no 4 I think)
Any point to going private?
