Bad news - Rheumy Appt update

Rainbow77

Hi everyone

How are you all? I know I don't post often, but I do try and read if I can.

I went to see my Rheumy yesterday. I thought the appt was last friday - so I spent the whole week getting ready and then when I looked at my appt card - it was a week later. What a wally!! I think that sums up how I am feeling at the moment. I just wrote the date wrong in my diary!!

Anyway I have had 2 flares since I last went and the my pain has been really bad of late. (but I know I have been in denial, it is this, it is that, no - you have an illness) I went back to work at the end of January and I have been slowly been rebuilding my life once again. I have had 2 flares since march and I have been starting to struggle a little bit.

She looked at my feet and said that I have joint damage, the first signs that arthur is taking over. (I feel so defeated) She has referred me to podiatry for a proper assessment. She said that it was really important that they looked after my feet. I am really struggling to know what shoes to wear as they hurt so much.

She then said that she wanted to up my drugs and increase the amount of sulfasalazine that I take. From 4 to 6 over the next 2 weeks. I knew that was coming, but I was not prepared for how I would feel about it. It was such a blow to me. I have been getting back to work, rebuilding my life and taking on more things and now I feel that I might loose it all again and the thought of continuing to fight on - I just feel tired already and the new battle has not began yet.

I am not sure if I may experience side effects by increasing the sulfa - anybody had any experience of that. I know what it was like the first time round - 6 weeks of headaches and nausea. But I hope it won't be as bad as that.

The thing that upset me the most, was that she said if it did not work then we would have to think about other drugs. I really want to have a family, but I am single and I have not found mr right. I am worried that time is against me now, but I don't think anyone will want me anyway. So starting to think if I need to prepare myself that I won't have children. That thought is killing me at the moment.

Anyway - great to come on here and share my thoughts with you all as I don't feel that anyone else understands. So thanks for listening. I know it is one day at a time. But I have decided that I won't take any more work for September - I am already booked for 3 and 1/2 days a week and I am also committed to kids work at my local church and that takes 1-2 days of my time.

She said that I need to be sensible. She is so lovely, and then at the end she said, 'we are here is you need us, just give us a call'. I know I am so fortunate to have such a great rhemy team behind me and not everyone has that. But it made me worse!!

I come and had a long walk around london and just cried my eyes out. But I did feel better for that. So will increase the dose tonight.

Thanks for being there

Take care - fayann xxx

elnafinn

Hi Fayann

Great to hear from you but sorry that you are going thu mill at the moment. You have done really well after all you went through and had to contend with.

The fact that you have a great rheumy team behind you should not make you feel worse. It should instill confidence - they are there for you. They know what a tough time you have had and wish to help you all they can.

It is good to let your emotions out which you have done today and I wish you well with the dose increase. You know we are here for you as and when you wish to call in. I remember you from way back and had to reply to your post as I believe I do most times.

Chin up luvvy, you are doing good. Keep on, keeping on. I don't know how old you are but I have heard of happy endings for people I know that really wanted a baby but had not found the right man.

Luv
Elna x

frogmorton

Hey Fayann

Bum!
Listen here.....you are doing well, you can keep control of your life....it WILL be ok.
So maybe the sulpha will make you a bit nauseous, but I'm sure not as bad as last time and you can do it slowly can't you?
Then things might be totally under control - you never know That would be really excellent wouldn't it?
Podiarty will help too and you will be glad when your feet are more comfortable.
As for finding a man/having a baby - (sorry I can't remember how old you are :oops: ) - the right man loves you as you are - as you will love him. He won't be perfect no-one is!
Accepting that you might never have a baby is a dreadful and almost impossible thing to do. But women do do it. Who knows you might just meet Mr right and do the whole thing really quickly - I have a friend who just had one at 37 and another who has just given up IVF at 42.

Your life is very full and sounds very FULfilled too. Lots of people don't have as much in their lives as you - so get on the sulfa and KEEP control of your rich life.
You take care
Love
Toni xx

jaspercat

Hi Fayann, great to hear from you, sorry to hear you are feeling rough though, with regard to the date mix-up I am sure that lots of us have done that, I can't advise with the Sulpha as it is some time since I took it. I am glad that you have managed to get back to work, and that you are getting on with things, love Jaspercatxx

Wonkylegs

HI Fayann,
sorry to hear that your appointment was not all you hoped for, but you do say that you were expecting some changes, so perhaps it is a little reminder that we should not plan too far in advance and try as hard as we can to take each day as it comes.

Something hard to do but which I am having to try hard to do is to not worry about the stuff I can't do anything about. Like I say, not easy. But why waste the energy that you DO have, in worrying about things you CAN'T do anything about.

I will email you about the other bits

Oh - just a thought about shoes - I know I will have mentioned it before .... Hotter shoes are recommended by many podiatrists (so I understand, having never seen one myself ) and come in a fair range of styles. Not cheap though.


love and hugs,
((((((((((((())))))))))))))))))))))))))))

noeltone

HI Fayann Great to hear from you and easier said then done I know but try to stay positive and at least you have and are happy with your rheumy team which is a really good thing to have, anyway i will pm you a bit later alb Chrisov,

woodbon

Hello, I am so sorry you feel upset. You sound as if you have a wonderful Rheummy, who wants to help you as much as she can. Thats a great asset for you, so many people have to struggle to get help.

I'd say from my own experience, don't think about having children yet, thats something that is in the future and to be looked at when you and your partner decide thats what you want. To worry about it now is just giving yourself extra stress. At the moment, you need to get yourself as well as you can, as thats the most important thing in life. I know this is a fact, as I had to face not having children or risking my health and I knew that I'd have nothing without health, so thats the way I went, and although my husband and I have no children, I have been able to enjoy years of good, happy life.

But lots of women do have children and RA so, it may well be a =problem that you don't have to face. I suppose what I'm saying, is live each day as it comes and try not to worry about things that may never happen! Love Sue