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Hello Everyone!

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

Alexandra

xxxx

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Hi and welcome to the forums!

 

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!

 

Warm wishes,

Heidi

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Alexandra,

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.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Pamela!

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.

Take care

Alex

x

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Hello Heidi!

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

Alex

x

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Hi Janey!

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 :o

 

I hope you are having a great day!

love and light

Alex

x

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Hi Alex,

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!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Guest Jennifer

Alex,

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,

Jennifer

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Hi Alex,

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!

Take care,

Nan

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Hi Alexandra, Boy oh boy, you really have been through the mill. I'm sorry your having such a tough time. Do you live alone? I hope you have some help from someone. You mentioned it was hard to get groceries. I can't imagine being alone and having to deal with all of these health issues, my huband is great. Well, I'm glad you came to this site all the best to you and keep coming back

 

Jackie S.

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Welcome, Alex!

 

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.

 

xoxo emmie

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Welcome Alex. Boy, you have been through the mill. Just wondering from you and anyone else..are dental problems more prevalent with Sclero and why?

Thanks,

Gwen

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Dear Alexandra,

 

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.

 

Warm hugs,

 

Dee

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