New to forum and hello!

Hello everyone,

I'm new to this forum and wanted to say hello. I don't know anyone with either Raynaud's or Scleroderma, and feel pretty isolated sometimes. I'm a single mom with two kids who are incredibly supportive. Although he either won't admit it, or doesn't know it, my former husband couldn't manage living with someone who had to cope with the issues involved with these diseases, and left.

My personal progression started with Lupus (SLE) 11 years ago, followed by auto immune thyroiditis, then Celiac, then Raynaud's, and finally in November - Systemic Scleroderma. Lately, I've been having trouble with the "bending parts" - knees, knuckles, etc. I've got the "red dots" and other peculiar things that crop up. I teach my two children, work part time and am taking classes to become an estate agent. I am hoping that I will be able to make enough money to support my children and have the flexibility to take it easy when things flare up. I feel like I have to hurry because it seems every year it gets more and more difficult physically. If anyone has any suggestions on how to manage everything without losing it, I'd really welcome it. There are some days where I feel like I just can't make it.

I hope the best for everyone here.

kristinaf

12 Replies

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  • Carry on battling you have no choice. That is my philosophy. It's very hard at times. To diminish the load I try to solve any solvable problem, for example I was yesterday at my podiatrist to remove hard skin etc. I am glad your children help you when they can. They deserve a lot of smiles, hugs and cuddles. Your husband seems to have behaved as unfortunately many men do in adversity at home.

    I wish you a lot of good luck and strength of character. I speak for everyone in our group I think when I say that we as a group will support as much as we can.

  • Welcome to the forum, your children sound like they're a great comfort to you,well done.and keep going ,they need you there...take care.xx

  • Dear Kristinaf

    I am so sorry that your ex husband did not support you a little more in the battle you are fighting,do you know,if he was that uncaring he was not worth bothering with,you deserve better than that.I am a man suffering from limited scleroderma,and I also have pulmonary hypertension associated with scleroderma,i too have days when I do not feel like life is worth living,i sometimes wake up and think I do not want to carry on living,but I kind off give myself a slap round the face,and tell myself to get over it and stop feeling sorry for myself,it is the only way to carry on.So please do not feel you are alone,i felt like that for quite a long time,but I now realize I am not alone,and we are always here if you want to pour your troubles out,i am very good at listening,and I for one am here if you need me.Don't forget,we can fight this illness together.Take good care of yourself,and god bless you.TIM.

  • I am glad you replied. I was thinking similar things to others, but then thought that its not necessarily a man thing. Just a symptom of change in a relationsip.

    I too, found it hard going in my last relationship. My partner would suggest that I was lucky to have 'such a caring person'. Then he would talk negatively to all of his friends about me. I felt he wanted to 'appear' as a Mother Theresa, when in reality it was nothing like that.

    Sometimes its better to be on your own.

    The whole economic thing going forward is an unknown for everyone. Its just that we are confronting it in the here and now.

    I dont really plan too far ahead anymore. I am not planning on disappearing quickly, but the stresses involved are sometimes too much to consider. So I dont.

  • You just keep thinking along those lines and you will be fine my dear,may god watch over you and may he also take good care of you.God bless you.TIM.

  • Hi Kristinaf.

    Welcome to the site. I am so sorry to hear of your struggles. I am also a single parent, although fortunately I only have Raynauds which has been very demoralising over the last year or so. I cant begin to think how you must be feeling. This site has really helped me with any queries that I have had about the condition or even to read other peoples feeds when I am having a bad day, it makes me realise that I am not alone. Please try and make sure you give yourself a break and some time out to relax, I do know it can be difficult when you have children. I wish you all the best of luck and keep doing what you are doing. It sounds as though you are a fighter and we must all not give in to these conditions. All the best and try to keep well xx

  • Dear kristnaf. I too would like to say welcome to the forum. This is a great place to visit. I am sure you will benefit from the support you will receive here. I am so sorry to know you and the children have been left to cope but you know something, you will manage. My condition is not even half as bad as your own and I find it almost impossible to manage physically. I do feel down in the mouth from time to time but I still feel lucky to wake up and see another day. Your children sound amazing and they must be so proud of you. You sound amazing in what you have achieved and still trying to achieve inspite of your illness. Very well done to you and your family! I have little advice to give as you seem to have been there, done that etc, but what I would like to encourage you to do, is to find time to rest and recouperate and take good care of yourself. Try not to burn yourself out. It does get more difficult as unfortunately, autoimmune illness seems to be progressive and we sufferers do worry much about what the future holds, especially when there are children to take care of. However, it is important to rest and try to relax as much as possible. Easy to say I know, but stress makes things worse. I hope you no longer feel isolated, you are not alone. Your story brought a tear to my eyes though I know you are not looking for sympathy. Will you accept a big hug for yourself and your lovely children from me? Please keep in touch and let this "family" know how your getting on. In the meantime, best wishes to you all.

  • Hi kristinaf

    Just wanted to welcome you I have only just joined this forum and what a godsend it is. I really admire your drive to go out and train to become an estate agent when some days these illnesses make you feel so drained. Your family sound lovely. Keep going one day at a time, we know how you feel and keep logging on to this great website.

  • Hi kristinaf

    sorry to read of your difficulties, and I fully agree with everyone's lovely comments of support for you !

    "you never know how strong you are until you have to be" ~ Bob Marley

    This is one of my favourite quotes when dealing with the daily ongoing challenges which this diagnosis brings !

    Are you a member of the Raynauds and Scleorderma Association ? or checked out the website on raynauds.org.uk ? there is some great info and tips !

    And my tip for you is to make sure you get enough rest ! Sending rainbows to you :) x

  • Hi Kristinaf, You have now seen that you're not alone! We all understand what you're going through. I'm amazed that you work as well as look after your kids. Well done! There is another site called Vasculitis Foundation U.K. worth looking at. Lots of info. The more info. the more support I feel. This site has helped us all to be brave and life life as best we can. Take one day at a time. God bless.

  • Welcome :)

  • Welcome to the site. I have had both Raynaud's and scleroderma for over 30 years and founded the Raynaud's & Scleroderma Association in 1982. If you would like to chat just call the RSA on 01270 872776 and ask me to give you a call. Happy to speak to you and exchange symptoms etc.

    Anne

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