An update on me

kmt297

Hello All,

I haven't posted much recently as my computer at work lets me look but not log in to the site. I do keep popping in and checking how everyone is though! Well after lots of palaver at the hospital I was taken off humira (it's not working very well, I'm flaring constantly) that was a disaster - complete disaster, so much worse and proved that the Humira is doing something even though not much. So I'm back on humira as I've tried and failed on infliximab and enbrel. They tried to get me on a drug trial but I'm not eligible for it so am now waiting for any new drug trial to come up. I had a steroid injection which helped but is now wearing off... After a trip to my GP to talk to him about it all he encouraged me to apply for a blue badge which I did and lo and behold a few weeks later I received it! I held it in my hands with very mixed feelings, using it still feels like giving in to this rotten disease (which I never wanted to do) but on the other hand we have been able to do things that I couldn't before such as a day out sightseeing, going out for evening drinks / meal etc into town (which I always avoided and preferred out of town places with big car parks). So I do use it but I've set myself rules such as if there's a non-blue badge space nearby I'll use that to leave the blue badge spaces free... I still feel like I've lost another little piece of myself though, I lay awake one night thinking of all the things I no longer do... My PsA affects all of my joints but especially my spine and I am in constant pain but trying not to take to may painkillers as I've been getting bad heartburn. I am feeling a bit depressed about it all as well as a bit angry. My wonderful hubby is as caring as ever but he worries about me and tries to protect me too much. I am feeling very down and you lot are the only ones I can talk to about it without you trying to recommend weird and wonderful cures or judging me as lazy or a hypochondriac.
Thanks for "listening" sorry for a long post...
KT

angel1

As I read through your post KT, my thinking was how well you are dealing with everything. And you are you know, because, despite the feelings of depression, and anger, you are starting to accept the situation.

You will have realised for yourself by now, that anger and depression go hand in hand with the disease. If you feel at any time that these emotions are taking over, PLEASE ask your GP for help. There are many avenues you can explore.

Just a thought also. Why not ask your GP for a stomach protector, so that you can take as much medication as you need, without further complications.

Let your OH do whatever he feels he needs to do to help you, but don`t be afraid to tell him if, at any time, you start to feel smothered. Communication is everything, I believe...........Ange.

frogmorton

Hi KT

I was wondering where you'd been. Good to know you still look in - even if you can't post at work.

Blimey you have been through the mill girl Glad you at least have something - even if it's not as good as you had hoped steroid jabs are great but as you say they wear off

The blue badge is only right you know (your poor doc - he must have soooo wanted to help you) and I totally agree with you not using it if you can get near enough without.

I do hope that 'something' comes up for you very soon, this site is always here for you as you knwo - please do come on when you can and have a moan

Thank God for your husband eh?

Lots of love

Toni xx

barbara12

hello KT
Its lovely to hear from you again, I understand what you mean about the blue badge, I was the same, in fact I cried when I got it, but its has been such a good help, but you do feel has thoe you shouldnt have it for some reason.
I think it is part of the accepting that you have arthur and things are changing.
I do hope you get the right meds very soon, and get some relief, it will come, has for the depression, alot of people on here also suffer from this, but come out the other side when the meds are sorted.
You take care
Love and hugs (((((())))
Love
Barbara xx

cheshirefay

Hi KT,
I really understand the mixed feelings about the blue badge but it really is a god send . You will be able to do so much more now you can get close enough in your car.

You are doing well even though you don`t know it , I think you are wonderful managing to work and you should give yourself a pat on the back

Like you I try not to use the disabled places because I don`t use a wheelchair and they are extra wide for wheelchair access.

Think of the positives of the blue badge and enjoy the independance it will give you, you would not have got one if you did not qualify ,
Love fay xx

kmt297

Thank you for your kind words and thoughts. I am having a week off work this week after having some building work done, feels good to be having a bit of a rest but I am working at home too - cleaning up and tidying and it feels great to be able to do it at my own pace as I've got plenty of time... Hope everyone enjoys the bank holiday weekend!
KT

dreamdaisy

I was delighted to get my Blue Badge because it made life simpler, leaving me a little more energy for what I wanted to do. It is a blessing because the spaces are so much wider which makes getting in and out of the car easy. Like you I have PA, now in my toes, ankles, knees, sacro-iliac joints, fingers, wrists and shoulders so I find wriggling in and out of the car in a 'normal' space a nightmare. Learn to love it - it is a boon and we don't get many of those! Dreamdaisy