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What's the best thing to do?

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#41 Sooty30


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Posted 22 May 2012 - 12:20 AM

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

#42 Sooty30


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Posted 22 May 2012 - 04:56 AM

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?!

#43 Joelf


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Posted 22 May 2012 - 01:49 PM

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
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#44 jad12


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Posted 22 May 2012 - 05:18 PM

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.

#45 Amanda Thorpe

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Posted 04 June 2012 - 10:58 AM

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
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#46 Shelley Ensz

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Posted 04 June 2012 - 07:35 PM

Hi Sooty,

I sure feel for you and for all the new challenges you face, both as a caregiver and a spouse. I have some rather similar experience to draw upon, as my husband and I both had to juggle illnesses and working and max doctor appointments for years, which finally eased up a bit after he had a lung transplant a few years ago. So use whatever you want from the following tips -- and totally ignore those you can't use, okay?

1. Get organized. Make a list (a nice long list!) by topic, such as home/work/marriage/health/hobbies. It will probably be daunting, given all that you are juggling now. Then at the top of the list, put your major goals as "Rest, Refresh, Relax". Yes, I know, that sounds completely and totally impossible. But stress is a major factor in worsening many illnesses, including scleroderma. And women set the emotional tone for the entire family. So the monkey is on your back to try to set an example of relaxation and harmony, whether you like it or not. (I wasn't too happy about that thought, myself.)

2. Mark just ONE priority in each area of your life.

3. For every additional thing that you are adding to your life (like hubby's appointments), drop at least one or two other things. For example, you may decide to plant a perennial flower garden that can basically care for itself, for the time being. Or ask a friend to tend it for this season and reap the harvest for payment. The point is, something HAS TO give. We can't keep adding responsibilities to our plate and you will need room on your plate for increasing responsibilities.

4. Now, note everything on the list that could possibly be done by another person. Or even a robot. If your husband is no longer working, even though he is sick, he will need to step up to the plate to see what he can reasonably take on at home. It won't kill him, plus it will give him a sense of accomplishment, too. We decided to eat more cheaply, have all our meals at home, and hire a housekeeper with the savings, as neither of us could do the heavy cleaning anymore.

5. Make a list of everything that helps to make you feel Rested, Refreshed and Relaxed, and then pick your top favorites that are realistic both time and money-wise. Put music on that list. Then figure out how to incorporate these things into your daily life. For example, I was bedridden for a year. So I planned simple meals and my husband brought them to me, and we ate side by side in the bedroom, with candlelight and soft classical music. In the same time it took to have a meal, we both neatly accomplished the Rested, Refreshed and Relaxed goal.

6. Book extra time into every doctor's appointment. We have a rule that the person who is the Victim (has the medical appointment) gets to pick a place to go afterwards, whether it is out to eat, to a coffee shop, for a walk, whatever we like. We planned it ahead of time so that we both had something good to look forward to at the end of the session...or the hospitalization, etc.

7. Don't let the grievances add up, but do address them positively, because you are both under extreme stress. If you need marriage counseling, don't hesitate to get it! But meantime, you can ask your husband to brainstorm with you, because you want to find some fun ways to alleviate family stress. Then you can ask him how he wants you to respond when he complains that something isn't done perfectly. You can ask if it would be okay to settle for "less than perfect" in many areas, until the major stress is over with, at least. Then you could gently rib him to hold up his end of the deal when he strikes out for the Fairytale Land of Perfection again! Use every ounce of humor and good-naturedness you have ever possessed to help get you through this time, but do not let yourself become a carpet, either. Remember, you HAVE TO be in one piece, to help him stay in one piece, so it is worth it to use your wits and humor to find the happiest way to resolve things for both of you.

8. It's usually very tense on the way to an appointment. Talk to each other about how you feel about the pending appointment, and how you feel afterwards. Give your husband projects to do, whenever he gets grouchy -- such as asking him to plan a "fun date" for the weekend. It's possible to have fun, romance, and happiness with every stage of this illness, however, it does take a will of steel to pull it off.

9. I have an extremely old friend who always adds, "and drink a LOT of scotch!". I don't drink but I still like the sentiment.

Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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