Mixed feelings

Our youngest daughter is getting married on Saturday in a very unusual venue (can't say where just yet, sworn to secrecy). I am so looking forward to it and hoping that we don't have too much snow. The actual wedding is at 2pm with reception following, then big party in the evening.

However, I am in middle of ghastly flare, just about all my joints hurting badly, feet horribly swollen. Also, the horrible rash I have been suffering on the upper half of my body is still there, driving me mad with itching and looking as bad as ever. I got my wedding outfit about three months ago, but have had to go and buy completely different one in order to cover the rash. I was going to wear a dress but felt very self conscious due to my swollen knees and ankles, so have abandoned that idea and now wearing trousers and a jacket.

There is quite a lot of walking to get from car to venue so will have to use my wheelchair, then hopefully I can then use my new swanky new silver grey sticks once I am in the building. My daughter and bridesmaids are getting ready at this most unusual venue and in order to get to see them before they enter the venue entails me climbing up two steep flights of stairs. It's breaking my heart because that is impossible for me. There is no lift. So I shall not be able to do my mother of the bride duty and check them all over beforehand! I am determined to enjoy this lovely day, but there are so many logistical difficulties for me to deal with, not least being so exhausted that finding the energy to keep going through a very long day will be a bit of an ordeal.

I will post a picture on Sunday and then I can reveal the venue as well.

In the meanwhile I am waiting for Rheumy appointment to discuss all the tests which I have had recently, x Rays, bloods and dermatologist appointment and biopsies. I am only on painkillers at moment, hence this ghastly flare, so my appointment can't come soon enough.

The dermatologist gave me four different lots of creams and lotions for my skin, and she did say she thought it might be lupus,,but that it is possible to get similar rashes with RA so I am non the wiser !!!!

Lynda xx

15 Replies

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  • Grab a couple of good-looking men and get them to carry you up stairs.

  • Ooh Olive that sounds amazing, a nice couple of young hunks, haha xxxxx

  • If you were in the telford area I could supply them kickboxing black belts ,

  • Great idea Olive.....

  • It sounds like it's going to be a wonderful day! I wondered if you could link up with your daughter and the bridal party by using skype or facetime? If they could put a laptop on a table in the room you'd be able to see the action from your own laptop or phone and be part of it in a way you can manage. I realise it might be a bit late now, but it might be worth a thought.

    I also have a big wedding coming up in April (my 75 year old mum is getting married and it's going to be a big wedding with all the frills!) and I'm having to plan very carefully - what to wear is a nightmare, never mind getting through the day - but it's their day and it'll be a great celebration.

  • What a good idea, I never thought of that, we can face time thru our iPhones ! Brilliant idea. The actual wedding is being streamed live thru you tube I think. There is a media company organizing this. At the moment here in Shropshire there is a blizzard raging, just another problem as hubby has to collect his tail suit this afternoon.

    Xx

  • Hi Lynda congratulations on your Youngest Daughter getting Married, My Son Mark got married in June last year and I was his best man a great honour for me, So my RA was not going to spoil my day my RA consists of constant flare ups so I stepped up in fact doubled my Steroids three days before hand and it worked I had no pain all day and night and climbing stairs due to my Lungs was not a problem, Phone your GP and ask him if this is possible for you. Good Luck. matt

  • Oh Jockey such mixed feelings and such difficult times.... I like the Hansonm hunks idea above maybe the local fire brigade could oblige ;) but if that's not practical the Sype idea is a wonderful one!

    Is there anyway of being dropped off closer to the venue and the car go on to be parked? Is there anywhere at the venue that could be set up as a 'rest space' for you between the different stages of the day?

    I hope you have a great day and am looking forward to seeing the pics when you post them.

    Ali

  • I'm sure it will be a wonderful day for you Lynda but it is so hard to plan for in your current state of health I can see. I think the Skype/ Facetime suggestion sounds like a grand one and also wonder about a steroid shot but I'm sure you've considered this already as a possibility? I hope the day is great and can't wait to see images of the mystery location. Twitchy xx

  • Hi Twitchy, I would have asked for steroid shot, but my eye consultant told me that I must resist steroids because they will worsen my already serious inoperable cataracts and uveitis. still waiting for follow up appt. with rheumy, following all my recent tests. In the meanwhile I am so looking forward to Kate's wedding, but fearful I may not last the day with this massive exhaustion. I am resting tomorrow to brace myself for Saturday. When I start to think about things I can't believe I have been reduced to this state. Two hearing aids, dark spectacles, horrendous skin rash, unable to walk much more than a few yards, exhaustion 24 hrs a day, and still unable to be properly diagnosed and medicated. We are staying the night at the hotel where reception being held, so I am hoping I can slink off early to our room. In the meantime my outfit and big hat are hanging up and ready to wear. My EEEE shoes (mary Anne style with little strap over) and short stubby heels are ready waiting to cripple me. I will be reporting back on Sunday with much news to tell !!!

    Lynda x

  • I understand now about the steroids - of course you can't have them in that case - sorry. But you know it's amazing what we can pull off when the adrenalin starts pumping? I have had so many days over the past year where I think "how on earth am I going to get through this?" to myself - but somehow I do. If you need to rest what's wrong with resting? It's your daughter's wedding not an endurance test - you are too unwell just now to be suffering if you don't have to. An hour in your room might be enough to just give you enough of a boost. Really do rest up tomorrow too as planned. I think it's probably the days that follow that will be the ones to watch out for so don't take anything on at all for Sunday onwards - well that's how it usually goes for me anyhow. Tx

  • You are such a tease Lynda, I thought you'd have given in when you told us about this special day & mystery venue a while ago!!! You're obviously well controlled & don't wish to risk spoiling it. I really hope against hope that you feel miraculously better for the big day, maybe adrenalin will kick in & you'll be at least a bit free from your flare? Or would it be possible at this late stage to have a steroid injection, hoping it would kick in before Saturday?

    I was going to suggest your daughter & her retinue met with you in an accessible place, an ante room possibly, before the ceremony but maybe that's not possible? Sailaway's idea is a great one though, probably far easier too. Will you let us know the link to You Tube when you reveal all, or as it's being streamed live is it possible for us to know beforehand so we can be in on it lol?! I'm not sure how it works, how will people know if it's streamed live where to go to see it on line, do the media company release the web address beforehand to you? Anyway, I hope your h gets his tails, you're comfortable in your outfit & you all have a magical day. Do wish congratulations to the newlyweds.

    I hope all the tests show your Rheumy which direction to take med wise & you react well to them. x :)

  • Hi NMH. I am going to tell all just before the wedding on Sat. !! I should be able to let you all know the venue and how to stream it live. It's all really exciting. If you read my reply to Twitchy, that will explain why I have to hold off steroids at present. Meanwhile I am having a rest day tomorrow prior to wedding. I will post some pictures as soon as I can !! Lynda xx

  • That's great! I'll be sure to check in. I'm so sorry, that was thoughtless of me to suggest about the steroid, it had completely slipped my memory about your poor eyes, forgive my blunder. I hope you're left alone tomorrow so you can gather all you have available in reserve to be part of the celebrations & enjoy every minute of it. x

  • Hope you are able to rest up today and have a lovely day tomorrow. Farm

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