Have been lying low

Sorry I haven't been submitting much to website etc. This year has really taken a toll on me health wise. I'm sure I'm not alone in saying this but once the obvious signs (lesions etc) have disappeared the body is still fighting the flare.

Over the last couple of days a couple of my fingers have broken out again - hope I'm not heading down the same track again - thank goodness I have an appointment with a specialist this week.

Lesley

11 Replies

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  • Sending you big hugs Lesley. This year has been a pretty rubbish year for me too. I'm have been having been having problems with my joints more recently. I get really frustrated with myself at not being able to do simple things like undoing bottle tops and chopping veg. Even trying to style and dry my hair is becoming not only painful but really hard work. Next hair cut it is being cut off short. I can still have a trendy cut, but need to have a style that I can manage to do easily and quickly myself and without being in pain.

    Hope all goes well at your appointment with specialist this week.

    Another hug. Clare x x

  • Thanks for the hugs Clare. A big hug and to know that there are people out there who understand is as good as medication. Its funny but because things are starting to go bad again I went and got my hair done - short and covered the grey hairs.

  • Yes a very difficult year here too, so sorry you are having a bad time Lesley. Lets hope things settle down for us all, eh? . I'm in the same position as you with joint trouble Clare and for some reason the muscles in my limbs have turned to jelly and I can barely stand at the minute. I cannot blow dry hair either so I get a wash, dry and straighten at a salon and use a bit of dry shampoo to make it last a bit longer. It seems like being a pensioner doesn't it?

  • Thanks Jill! I've always worn my hair short and let it dry naturally which is a bit of a bonus now because I don't think I could blow dry it etc.

  • Hi ya, Hugs to you too Hun. I am finding not being able to do simple daily tasks myself really frustrating. Mentally I am finding it hard to come to terms with the fact that this bloody disease is actually getting the better of me, and I can't do anything about it except learn to adapt and rely on my parents and 11 year old daughter to help me. I was so determined not to let BD win and now it has gone and disabled me which is out of my control. I'm still smiling though, my daughter is my little ray of sunshine. C x x

  • This year has been a shocker here too, I feel like it's been Friday the 13th all year. Lesley I hope you feel better soon and don't forget to watch SBS this Wednesday at 8.30pm a man with BD is on it. I'm hoping to learn something but I will probably just sit and cry. I an having my parents come out as I haven't been honest with them about Jaida's pain. Jaida is now having Infliximab every 6 weeks as she wasn't lasting the 8 weeks. Poor thing has been to school only 5 days this term and has got another virus over the weekend. I have called her Dr as when she was in 3 weeks ago they thaught it best to start low dose steroids, instead of having her crash and then needing IV high dose steroids in hospital. I'd try anything to have this pain go for her.

    The RCH has a new program starting called RheumCAMP and Jaida is one of the first patients that has been asked to take part. It's this Thursday so I'm hoping she is going to be OK for it. All her team are going to go over her plan with medication and heaps of other things. Including what benifits we are entitled too. Goes for 4.5 hrs but hope to learn more.

    All the best Love,

    Michelle

  • Michelle - I did reply but not sure if it went through. Just out of interest where are your parents from? Will they get a shock with the hot weather here? With Jaida are you doing home schooling or do they have programs in the hospital to keep up with her education. Probably the last thing on your mind at the moment.

  • Thanks everyone. Must look at the program on SBS Michelle. Bit sad but I am now officially a pensioner (disabled). It is amazing how quick you slip into the mode - looking for all the coupons etc.

  • Dear Lesley, Make the most of the coupons and train fairs, etc, you deserve and earn it. Jiada's school was pretty hopeless until I cried at the mid year meeting. In fact I find it so painful to talk about BD I'm sure people think I'm a snob. Thankfully I had a cry one day at RCH when Jaida was in and the Dr wrote a magnificent letter, explaining what Jaida was going through and her needs from the school. It was a very powerful document. I bawled again for only the 10000000 time this year. Ha. While in Jaida is so ill all she cam manage is recovery but the RCH teachers do pop in and they are beautiful. When she gets out, as you have mentioned it takes a while to feel OK again. That's where the good old Aldie home work books come in handy. As we know this disease grabs hold far to much and something has to give, that's been school. Jaida is still managing to be middle of her grade and the teacher is very impressed. He wishes more students had here drive. He's a lovely teacher.xx

  • My parents are here in Ballarat so the weather is fine. I love the warm weather but it does knock Jaida. How does your body react in the warmer weather? I feel it's spring is the worst time for Jaida and winter is the best. x

  • Hi Michelle

    It's hard to say which is worse humidity or cold. I am using an electric throw rug and wheatie bags for warmth and I do find it helps.

    L

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