Sooty30

What's the best thing to do?

46 posts in this topic

Joelf, "singing for breathing" sounds really good! :)

By the way, it is good to find something we like to do. Singing is very good to maintain the lung function. Keep singing! I would like a lot to be a good singer :)

 

Sooty30, in some cases, we need a more directioned treatment because we should go slowly in exercising our lungs and the treatment must be regular and progressive.

 

Hugs to all

 

Ro

Share this post


Link to post
Share on other sites

We received a call from the Royal Free and now a letter, they want to start him on Rituximab on the 8 th of May. Not looking forward to this at all as not have no idea what to expect yet.

Share this post


Link to post
Share on other sites

Hi Sooty,

 

Well, at least your husband will be started soon on his treatment which I really hope will improve things for him.

 

We have some information on Rituximab here and here which I hope you'll find helpful.

 

I've been thinking of you and your husband a lot lately; please be sure and let us know how he gets on with his treatment on 8th May.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Sooty

 

My dear friend had rituximab and thought it helped her so it may help your husband as well. I know that her health authority (may have the wrong org) had to agree funding for it so for your husband to get it at the Royal Free is fabulous.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Sooty,

 

I've been thinking of you and your husband and I do hope that his treatment went well on 8th May.

 

Do post and let us know, won't you?

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello treatment went well he didn't react to the rituximab which was good. We were worried on the Monday as wasn't sure what to expect but was soon put at ease.he felt nice and spaced out when he had some medicine before the main infusion took place. Was a very long day as was on the ward for 9 and didn't leave till 6.

 

We did stay the night before in a hotel, glad we did and drove there to try and save a bit. Only thing I'm a little annoyed about is it says on the car park you can only park for 5 hours. Surely this can't be right if your having treatment there,we go back next Monday so will stay the Sunday night too as it is just easier.

 

He hasn't been too bad since then. I wouldn't say better at all just not any worse. He keeps trying to do things which is hard as he feels washed out. Like today he cut the back garden grass, our garden is small, I could do it in 10 mins. It took him 2 hours with stopping and starting but he hates it if I tell him not too do it.

 

I think we are going to fill out his disability forms soon. Did I read on here the Royal Free will help you do it? If so how do you raise the subject with them, or is it easier to just get on with it yourself, have just applied for blue badge too.

 

I freaked out today as I took my daughter swimming and when she was in the shower I noticed her hands were really blue, one thing they said to look out for, I am hoping it was just being in the pool too long as she was getting cold. Going to keep a close eye on her don't know how I'd be if my baby got ill too.

 

Hope everyone is keeping well and the sunshine we had today is here to stay xx

Share this post


Link to post
Share on other sites

Hello Sooty

 

Firstly your husband should be taking it easy! When he wants to do big tasks like that get him to ask himself "Do I want to fight scleroderma or fight myself?" I know that sounds harsh but I could not believe what I was reading in your post. Dispense with the pretense, spending 3 hours doing what someone else could do in 10 minutes doesn't mean you're well it means you're in denial. I should know, **I have spent 5 years saying "I can do it!!" even if I couldn't.

 

Regarding benefits, there is a lady at the Royal Free who will help with this, contact Kim Fliglestone (Scleroderma Society trustee) to find out who it is but I don't know if it's a free service. Here's something else to consider, once you husband applies for disability living allowance (DLA and I'd be shocked if you didn't get it), what do you think would be their opinion of claim validity if they popped round to find your husband gardening? Now I have had DLA for 5 years and no one has ever come for a visit and I don't even know if they do visit but I had to illustrate the point, if your rheumatologist and general practitioner are going to correctly detail the severity of his disease he might not want to blow it off by gardening, however long it takes.

 

I am very sorry to say this but it is not normal for hands to go blue in the pool, if it was I would have spent my childhood being called smurf! I am not a doctor but it does suggest Raynaud's. The good news is that less than 2% of people with Raynaud's develop scleroderma which means there's a 98% chance your daughter will not develop scleroderma if she even has Raynaud's. I would make an appointment for her to see the general practitioner to put your mind at rest.

 

Take care.

 

**I am ignoring the fact that I still say this...


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Sooty,

 

Thanks so much for letting us have an update on your husband's treatment and I'm really pleased that he didn't suffer a reaction to the drug.

 

Amanda's absolutely right with her advice about him taking things easy; I know he wants to try and feel better and get back to some sort of 'normality' again but it's very important that he accepts that for the present he has to give himself a chance at the very least to recover from the treatment he's had and enable him to cope with the severe fatigue which is a very real symptom of the disease.

 

I also think (like Amanda) that you should make an appointment to take your little girl to see your general practitioner about her blue fingers (but not the same one who was so totally unhelpful to your husband!) if only for you to get some reassurance about her. However, I suffer with Raynaud's now and can't remember ever having blue hands as a child, so everyone is different.

 

Please know that I've thought of you and your family a lot and really hope that things improve for you all.

 

:emoticons-group-hug:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Sooty

 

I forgot to say I never had blue fingers as a kid either and although I now have both scleroderma and Raynaud's the only other person in the family with Raynaud's is my mother and she does not have scleroderma.

 

The moral of the story is it's possible to have Raynaud's and not scleroderma even though someone else in the family has both.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Sooty,

 

There is Primary Raynauds where the condition occurs on its own. I worked with a woman who had it since childhood. She almost always had a cup of warm tea in her hands. She has not developed scleroderma. I never had blue fingers until I had scleroderma for a couple of years. I have Secondary Raynauds, which is when it occurs as a symptom of another disease. Lately my Raynauds is worsening but I am 7 years into the disease. Still, get an answer for your peace of mind and keep en eye on her.

 

There was a case of a woman in the U. S. who lost her disability payments because she was observed gardening in her yard. I know how hard it is for your husband to accept his life IS going to be different and learn to deal with it. Suggest to your husband that whenever a task comes up to ask himself if he would rather spend his time and limited energy doing it or something more pleasurable, like playing with your child or going on a family outing.

 

All of you caregivers deserve medals!

 

miocean


ISN Artist

Share this post


Link to post
Share on other sites

Morning everyone; we were back at the Royal Free yesterday for my husband's second rituximab. Unfortunately they found he has a chest infection after a chest X-ray so wouldn't give him the treatment. Sent home with antibiotics and have to go again next Wednesday.

 

I know it is for his own good they pulled the plug yesterday but so frustrating as a room for hotel in London 3 times in a month plus travel is costing us a fortune. More than we have spare anyway, but we don't reckon we qualify for government help. I tried joining the Scleroderma Society online but kept being told record not stored. I'm just fed up really as it's the child care too; keep pushing my daughter from pillar to post is starting to affect her. I think we may take her next time; the sister on the ward is fine with that and if she gets a bit noisy I will take her out for a while .

 

He just doesn't seem to be getting any better and he is admitting that now but it's getting him down. It's hard work trying to stay happy for us all when he snaps my head off all the time, then he says sorry and it's fine as I know he can't help it but I am scared it's only going to get worse. I find it hard with doing everything around the house and garden, raising a nearly 3 year old and working 34 hours a week which will be going up to 48 hours a week in August if he doesn't go back himself and what really gets me is when I do something and he tells me I haven't done it right......that makes my blood boil.

 

Sorry for the rant not many people understand how hard it is for the partner at times. Off to the doctors today to try and ask to have his bloods done on Friday. Royal Free said if we have that done on Friday and bring the results on Wednesday, meaning we would need them back by Tuesday so we can travel up to London on Wednesday after rush hour and start the infusion straight away as we won't have to wait for the rituximab as it's on the ward. Clinic said on the phone yesterday it would have to be done today ( what part of it needs to be done Friday don't they understand?) so going to ask to speak to the practice manager, or we have to see our rheumatologist next Tuesday in Chelmsford. He referred us to London so I'm going to phone his PA today and see if we have the bloods done on Tuesday and can we hang around for a couple of hours for the results so we take them with us. Fingers crossed

Share this post


Link to post
Share on other sites

Spoke to the rhumatologist in Chelmsford and they are going to sort out his bloods on Tuesday and give us the information to take Wednesday so that's good news. Why can't your local general practitioner be as helpful?!

Share this post


Link to post
Share on other sites

Oh Sooty, I can't tell you how sorry I am that you're having to cope with so much on top of the worry of your husband's illness. Things must seem very difficult for you at the moment. :emoticons-group-hug:

 

I can understand your frustration at turning up for your husband's treatment, only to find that he can't receive it at that time but unfortunately as these treatments tend to suppress the immune system, obviously it would be unwise to go ahead with it if he's fighting off an infection. I remember the same thing happening when I was receiving cyclophosphamide. I hope that the rituximab will help your husband but I think you will have to expect that it will take a little time before the inflammation on his lungs shows any improvement. I'm pretty sure I didn't really notice much difference in my lung function until after the third infusion of cyclophosphamide and it did take the full 6 infusions before I was able to show such a marked improvement.

 

The Scleroderma Society have just launched their new website, so that might be the reason that you've had a problem when you're trying to join the society on line. Perhaps you could try again now the website is properly up and running? Also the Scleroderma Society do have a Caregiver Support page whereby you can contact Amanda's lovely husband, Michael, who is keen to get in contact with other caregivers for people with scleroderma; he understands the very real problems you're facing and can offer you support and advice. There's also another link on that page for Carers Direct: information, advice and support for carers; they also have a helpline where they can give you more help and information.

 

You are not on your own; finding and joining these forums was one of the best things you did to help your husband!

 

My best wishes to you,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

I feel sorry for my husband- he's got to put up with knowing I have this. So far he's been very brave but it's got to be hard on him. He's also taking time off work to ferry me to the city even though he is head of his department and so very busy. Your life sounds very hectic and I can understand the pressure you feel financially and emotionally. I hope things get easier for you.

Share this post


Link to post
Share on other sites

Hello Sooty

 

The realisation that you're not going to get any better, either for a long time soon or at all is hard to come to terms with for both the person with scleroderma and thier loved ones. It also takes a long time and as you go along you realise that the world makes no allowences for you, you're still expected to work, care for your child and pay bills, sometimes with help sometimes without.

 

The process of grief for both of you will take a long time, 5 years into my illness my husband and I started admitting our losses to each other. I had started grief counselling which spurred this process on but it's a hard one because each of you feels blamed by the other and in reality you aren't.

 

Can you please PM me and let me know whether you have now been able to join the Scleroderma Society? Once you have you, Sooty, can have access to their Carer Support as well as pursue your application to their Assistance Fund. How are you getting on with your application for Disability Living Allowance etc?

 

The beginning is always the worst bit because you're constantly bombarded with one thing after the other and it never seems to end and you can't ever imagine yourself having any sort of quality of life again. It takes time but you can and you will establish a new life, it won't ever be what it was but you can still have a good life it's just very different from what you thought it would be but that's not necessarily a bad thing. I don't say that glibly I say that having lived it.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now