Posted 10 January 2007 - 02:24 PM
My name is Alexandra and I live in the UK. I have been on this sight many years ago and once again find myself unable to sleep and here I am!
I am a young woman of 40 and have systemic Sclerosis, with a reduced lung function of 30%,and dermatomyositis,Raynauds,and all the usual problems with swallowing, mouth tightening, telangectasia, joint probs...oh just a great big jumble of trouble! To add to the mix I had a brain haemorrhage in July. Having said all that I am actually doing ok.I am on a 6 months course of Cyclophosphamide,and have been on Mycophenelate Mofetil (Cellcept). Other treatments include Octagam (Ivig) every 6 months and Iloprost for Raynauds. If any one wants to know anything about these treatments please don't hesitate to contact me.
I wish you all a very happy new year, full of laughter, loving and living. It's so hard not to feel alone,when I'm so tired and sore, and just getting out to get food is hard work. But I guess here is the place where someone undestands.
love and light
Posted 10 January 2007 - 04:20 PM
Welcome back! Sounds like you have your fair share of stuff going on! I like your positive attitude though.
Please know we are here for you in the event you have questions or just need someone to talk to.
Posted 10 January 2007 - 04:52 PM
It is good to have you join us, but sorry it is because you are having so many symptoms. I am glad to hear that overall you feel you are doing pretty well. Did the doctors think the brain hemorrage was due to scleroderma.
Again, welcome back!
Posted 10 January 2007 - 06:47 PM
Welcome back Darling! I'm so glad that in spite of your fatigue and on-going health problems that you have decided to join the forum again and share with the rest of us. As Sweet said - you have such a great attitude which is good for all of us to see.
Sounds like you have been and still are on quite a regimen of medications. I'm on the oral cytoxan (cyclophosphamide) and the IVIg every 6 weeks. I sure wish I could stretch it to 6 months, but we tried 8 weeks and that didn't work. It's been the one treatment that really controls the fatigue and my polymyositis. I'm not sure how much it helps the sclero, but like you - I'm dealing with the whole MCTD thing.
Again welcome. It's good having you back.
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Posted 11 January 2007 - 12:08 AM
Thank you so much,for your welcome.It's lovely to be amongst such support.But also somewhere where you all know so much,it's wonderful.
Posted 11 January 2007 - 12:21 AM
Thank you so much for your warm welcome!
I really look forward to getting to know some of you.
The specialists at the hospital didn't feel the brain haemorrhage was scleroderma related,and I had it at the time of having a large amount of local anaeshetic injected into my mouth.So the feeling was that it was my sensitivity to adrenaline in the injection(plus I think so many damaged blood vessels in my mouth due to scleroderma,so that some of the injection entered a blood vessel that circulated into my brain??) that caused very high blood pressure and then bleed.
It was truly the most pain I have ever felt,and very frightening.
It seems when our bodies have this much going on,or not working quite right,it's response to any procedure or event isn't going to be 'as expected'.
It's raining so hard here ,hope you are having a great day!
love and light
Posted 11 January 2007 - 12:26 AM
Thank you so much for your lovely welcome!
I'd forgotten how good it feels to be talking with someone that just knows what I'm talking about and how my body feels.
I imagine that you and I have similar tired and sore muscles from myositis.I have a massage booked next monday,which always helps with the stiffness and discomfort. I always fall asleep though and make gorgeous snoring noises
I hope you are having a great day!
love and light
Posted 11 January 2007 - 02:27 AM
Welcome back! Although you have been gone a while I am sure you find we are all the same here ready to talk, listen and help in anyway we can!
Wow a brain hemmorage.... when you think you have had it all!?
How are you feeling now?
Hope to get to know you better!
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Posted 11 January 2007 - 03:18 AM
Welcome back! Sounds like you have a lot going on. I'm glad you are back for support and glad you are OK now after the hemmorage. Were you having dental work done at the time?
I am so afraid to have anything done anymore...but actually, since I've had sclero, I think I"ve had every tooth in my mouth worked on!
Take it easy,
Posted 11 January 2007 - 04:02 AM
I just recently joined this forum. I have CREST, Sjogren's, and Fibromyalgia. My Raynaud's is really bad. I am so sorry to hear about all you have been through. Scleroderma is enough, you didn't need to have the brain bleed too. I hope that you are feeling better from that. Keep that positive attitude! I find that it really helps, plus I laugh a lot!
Posted 11 January 2007 - 05:28 AM
Posted 11 January 2007 - 07:44 AM
Posted 11 January 2007 - 06:19 PM
Things must only go up for you from this point on! And dental work that led to a brain bleed...eeewwww!!! There is quite a group of us here who seem to be best friends with our dentists and quite dental phobics so we can really really feel the horror of that.
Glad to have you among us. It is wonderful to have somewhere to come where you know the others understand.
Posted 12 January 2007 - 10:49 AM
Posted 12 January 2007 - 11:32 AM
Wow, have you ever been through the fire! And you are so young. I hope this new year will bring you lots of warm support. I know you will find it here and hopefully also find friends close by to give you a helping hand.
Pain can be so debilitating. I admire your great attitude. Attitude really sets the direction we go, doesn't it?
I hope you come here often. You will be understood and encouraged. By the way, you and my granddaughter share the same beautiful name.
Posted 12 January 2007 - 01:58 PM
It's good to meet you!
I hate the dentist!However much I say please be gentle my mouth doesn't open very wide,my cheeks are tender..he dives right in there pulling and tugging!
It seems that maybe you and I are in a similar stage of Scleroderma.I too have severe lung involvement and at a similar age to you have been talking to my doctors here about having children.(Even though I don't have a boyfriend!) They told me rather harshly that at my age (40) with my health it was basically out of the question.They also said I was too old to take eggs from.I do feel sad about it,as it was an experience I wanted to go through.But sensibly speaking surviving is obviously more important.Adoption is a wonderful gift,both for you and the special one who gets you as a mum!
Posted 13 January 2007 - 10:45 AM
How are you doing?
I was dianosed in 1989 aged 22 with dermatomyositis,which then over the years crossed over in to rheumatoid arthritis ( I now how metal work in both wrists and my neck) and was diagnosed with scleroderma about 6 years ago,though I have had raynauds and swallowing difficulties for many many years.In the last 3 years my pulmonary fibrosis has worsened considerably,hence the Cyclophosphamide treatment.Not pleasant as far as nausea etc,as they have me on a particularly high dose.But I can still eat vast amounts of chocolate so I'm ok!
Anyway I have kept myself reasonably 'soft skin wise' with daily massaging with aromatherapy oils and stretches.So I am managing fairly well!
I hope you are having a great weekend!
Posted 13 January 2007 - 10:46 AM
Thank you for your welcome,I'm so pleased to have found such special people here!
I look forward to getting to know you
Posted 13 January 2007 - 10:51 AM
What a wonderful welcome,it's like having a cyber hug!
I agree attitude is all important in getting through any thing that is painful,but also long lasting.
It is so hard when illness lasts for a long time as it almost seems a physical effort to keep your spirits up,but it does make a difference if you can.
I swear I can almost feel my cells relaxing and becoming energised and lighter when I think loving,positive and peaceful thoughts!Either that or the painkillers are kicking in
I hope you are having a great weekend.
Here we have so much wind and rain,so I'm in and cosy!