[butterflybee]

Happy new year to all!!! Though I'd start with a summary of how my last visit to the rheumy went couple of weeks ago, last saw him in Aug - attempts to wean off 10mg pred failing, still waiting for plaquinel to work. Now feeling very fat & unfit, have put on about half stone. No more joint pain as long as keeping on 10mg pred. Still not feeling 'fully well' - some days feel like I'm about to go down with something. Am i feeling depresed? dunno.

So after the anticipation of giving 7 tubes of blood at the docs - not all of the results came back in time - which was highly annoying! My complement levels aren't so low this time. However I was finding it difficult to explain what symptoms I was still having & I was choking up with tears!! Didn't actually break down but I did shed a few requiring tissues, felt soooo stoopid & red faced afterwards - wait months to see this guy & then I come over all silly!

He said that I was coping too well in the beginning & that I was grieving (?my previous life). I said that I was probably in denial back then & that usually on everyday basis, I just forget I have lupus & just get on with 'it'. Its only when I have a dr appt, I start feeling sorry for myself - very terrible & selfish. So now I've been started on azathioprine 25mg working up to 100mg over 4 weeks with view to reducing steroids next time. Dr says still not right time to start trying for baby - maybe in spring??

I was feeling that all that I was living for is for my lupus to go into remission so we can start trying for a baby. How sad is that? Now its a new year, I'm taking stock of what I have & try & improve my self esteem. So while i'm not experiencing any joint pain, I'm going to go back to the gym, as I'm sure being so unfit is what is making me feel so miserable lately.

He was also asking me if I thought I was depressed (I said no), how my sleep pattern is (sleep a lot & very well, but not always wake up refreshed) & how my husband is coping (he treats me no different & sent me the sweetest birthday & xmas cards this year!)

So new year, new me!! I am determined to not let this lupus get me down!!!

 

[Katharine]

Good for you!

I'm glad you have decided to look at the New Year differently.

I think we are all obssessed with something or other to a certain extent. With you, it's having a baby, with me, it's getting back to work. I think these things can make us feel terribly miserable because we are simply not ready for them healthwise and feel like life is "on hold" just waiting for that one thing to happen.

For me, I find that I have to completely "forget" that one thing, put it out of my mind and get on with life. Whilst thinking constantly about work and why I need to get back, I am in limbo. If I stop doing that and just "live" life to the full every day then I also enjoy life.

If you can get to the gym I think that that sounds like a very good idea. Personally, I have always needed "goals" or projects in life. I have found recently that I just need to readjust my goals. Instead of wanting to be more successful at work or make more money, my first goal was to be able to walk the dog every day. I can do that now, so my next goal is to walk longer, more energetically, then hopefully work up to going swimming, maybe the gym - in short, slowly get my body back to some sort of fitness.

I hope that your "New" year goes just great
Katharine

 

[lazylegs]

Don't be embarrassed about a few tears. Doctors see it quite often with patients suffering from a chronic disease.

It happened to me after having Lupus for 18 years. I had taken a turn for the worst and nothing they did was helping. None of the tests were showing why. I was having a neuro exam for Social Security and the doctor asked me how I was coping with the disease. That did it, I started to tear up. I felt really stupid since everybody was always telling me how great I coped with all my problems. The doctor explained that the reality of how severe the illness had become, the loss of my job, and my new dependance on others finally hit.

Good luck with your new medication. I hope it starts working for you quickly.

Take care,
Lazylegs

 

[Maia]

I am really impressed with how your doctor handled your tears at the appointment - really impressed. I think he is right on too by the way.... and I also find it interesting how he said he thought you coped a little bit too well in the beginning. I think I was much the same way as you!

Good luck with everything - I'm sure there will be a good time for a baby in the future for you. A good time to wean of steroids would actually be in the second trimester of pregnancy as the baby produces some extra for you then I certainly felt wonderful while pregnant!

Take care.

 

[AmandaB]

I too have a whole list of 'New Year. new me' things to accomplish!!!

I almost fell at the first hurdle though.....I went into Boots to have a go on one of their new machines that does weight, BMI & body fat. I new I'd put on but was surprised at how much but that wasn't what knocked me - it was my height! I used to be 5'2" and went down to 5' which I can cope with. However this damn machine says I'm only 4'11" - how the **** does that work? I mean, ok I've never been a giant and I know you shrinkwith age but this is rediculous - it's right up ther with the cattarach diagnosis the optitian gave me last year.

My reaction is - 'oh man, - come on, gice me a break!' My other half thought it was highly amusing.....

Anyway, just wanted to say as well - I am soooo glad it's not just me that goes to pieces in the Dr's. I'm good to go every day but give me an appointment with the hospital and all my questions go out of my mind, I can't give answers to their questions and I alawys feel 'ill' for the next few days afterwards - I think it must be the build up maybe?

Anyway, I have an appt with the knee surgeon on 21st, my rheumy on 31st and then back to St Thomas' in Feb to see Dr D'Cruz and this time I'm armed and ready (with a note book!)

Happy New Year to all

AmandaB