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In Support Of My Mum


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#1 Webby

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Posted 07 October 2007 - 12:39 PM

Hi all, I have found this wonderful forum and wanted to introduce myself.

I am here in support of my Mum. My name is Richard (from the UK). My Mum was diagnosed with Scleroderma 2 months ago, and since then things have become increasingly worse.

Looking back on it the signs of sclero were there as far back as 2 years ago, dry eyes, tight mouth, acid reflux, but it was all put down to being 'that time of life' for her. Mum was fine until January this year when she fell down our stairs. From that point onwards she started getting muscular/joint pains in her one shoulder. We thought it was tendinitis or even a pinched nerve. The pains were becoming worse and worse and were affecting more and more joints. Sadly in April my Dad was diagnosed with lung cancer. Mums pains continued to increase and was having very bad acid reflux and problems swallowing. She also had a liver test done that the doctors described as 'haywire'. Two months ago Mum was taken into hospital with severe vomiting and extreme diarrhoea. She needed 21 litres of fluid during her 2 week stay in hospital. Mum's joint pains, skin thickness and swallowing problems escalated dramatically whilst ill in hospital and went from being a signifcant nuisance to a crippling problem. It was found that she had a GI bacterial infection making her vomit. We explained all of Mum's other symptoms. After various tests, lots of poking and proding she has been diagnosed with SSc.

Since Mum's first stay in hospital she has been admitted twice since with sever vomiting problems. Right now her SSc symptoms also seem very severe. She can barely walk and is in a lot of pain. I have not been to work for 3 weeks as right now I need to care for my Mum and Dad. We have finally started working our way through the NHS system and we have a lovely rheumatologist who is very keen to help us. We have been referred to Professor Carol Black and Professor Chris Denton at the London Royal Free hospital who seem to be leading figures in SSc research. We just found out that Mum has fibrosis of the lungs and a barium swallow has showed thickening of the oesophagous too.

######. What a rambling! Needed to get it off my chest. Hope I don't put you all off with what seems like a tale of woe. I look forward to cheerier times in the future!!

Thanks for listening,
Rich.

#2 Margaret

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Posted 07 October 2007 - 01:31 PM

Hi Rich ,

My........for a son, you sure have a lot on your plate. I can't offer any help, only say that many here know how your Mom is feeling. I don't have sclero, but my son was diagnosed last Oct with sclero/UCTD problems.....esophageal, lung, fatigue, and vocal issues. Is the rheumatologist putting her on meds?

Do take care of yourself, too......sounds like your parents have raised a wonderful son.

Take care, Everyone.
Margaret

#3 Sheryl

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Posted 07 October 2007 - 01:51 PM

Welcome aboard Rich,
Tell your mother we are in her corner. She has been through some rough times for just learning of her illness. Hopefully she will be getting her issues solved shortly and she will be enjoying less joint pain and muscle fatigue. I've heard Carol Black is awesome. Once decisions are made on what is the best resolution for lung fibrosis and joint pain other issues will fall into place. I'm sure others here will give you more insight on options for your mom. You are a wonderful son to take care of your parents as you are doing. Keep your chin up and your spirits strong. For yourself, so that you have energy for them. Ask us any questions you can think of that you would like answered. If any of us can help out we will. Sheryl
Strength and Warmth,
Sheryl

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#4 janey

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Posted 07 October 2007 - 04:03 PM

Rich,
Welcome Darlin'! It is so sad reading what you are dealing with with both your mum and dad. What a great son you are! Please never hesitate to vent here. This is your extended family now and it's best to get your venting out here so you can have a clearer mind when you with you parents.

There is so much information on this sight. I hope you can find some time to review some of the studies on the various scleroderma symptoms that your mum is dealing with. It's good to educate yourself so you can help your mum better understand what the doctors are talking about. It's a whole new vocabulary.

I'm glad to see that she is going to be getting some help from specialists. It's sounds like she's at the point that she should accept nothing less. Please keep us informed on how she is doing, how your father is doing and how YOU are doing.

Big Hugs to you all,
Janey Willis
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#5 aniwallar

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Posted 07 October 2007 - 04:39 PM

Goodness:
You have a lot to deal with right now.
I'm glad you found us. We all try to keep each other encourage. Living with this illness is not easy, but I'm sure it is just a little better for you mom knowing she has a son caring son like you. Please keep us posted and anytime you need to "get it out of your chest", just reach us. We are here for you.
Ani

#6 emmie

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Posted 07 October 2007 - 05:04 PM

Hi Rich,

What a great guy you are! I'm sure your parents are quite proud of you as you are a terrific son.

I'm so sorry about the problems both of them are having. That must be so stressful for you. Let your mom know that you have found this forum. We will be happy to try to answer any questions she has (or you). We are also good at listening to frustrations that this disease can bring, and we try to be helpful to each other in finding ways of coping with it.

Take care of yourself so that you will be able to help your parents.

xoxo emmie

#7 jefa

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Posted 07 October 2007 - 11:15 PM

Hi, Webby (Rich). So nice to see a young person take such a personal interest in the care of their parents. I am sorry to hear that both of them are stricken with major problems. As the others have said, this is an excellent place for information and support. I am on the NHS system, too, though not lucky enough to be near the Royal and what it offers, but I am getting reasonably good support from my rheumatologist. I hope that your mum's doctors can get the vomiting issues resolved soon as that can be such a huge drain on personal energy. Big hugs to you -- keep your own spirits up in whatever ways you can. It will be good for all of you. Big hugs to you.
Warm wishes,
Jefa

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#8 epasen

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Posted 08 October 2007 - 06:08 AM

Rich, I'm sorry to hear about your parents conditions. I want to send some energy to take care of them, and lots of good thoughts too. Take care, Emmi

#9 debonair susie

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Posted 08 October 2007 - 06:44 AM

Your mum and dad are so very fortunate to have a loving and caring son as their advocate, Rich. The more empowered... (w/information) you become, the better the three of you will feel (emotionally). Most importantly, please try to keep yourselves as stress-free as you can, as stress is not good for anyone and it can also exacerbate symptoms further.
This community is full of great information and if you find yourself with any spare time, there are wonderful links that have been posted, as well as great threads (of those of us here who have first-hand experience with Scleroderma), as well as other autoimmune diseases that often overlap.
Don't forget to take care of yourself... as you care for your folks. Though you obviously care deeply for your folks, what you are doing can also be very physically, emotionally and mentally draining.

Susie
Special Hugs,

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#10 scampie5

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Posted 08 October 2007 - 07:40 AM


Richard your parents will be so proud of you it is a hard condition to understand and this forum will help give you the support you need I also live in the uk in surrey and was diagnosed last year you have found the right site for support Lynn

#11 Sweet

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Posted 08 October 2007 - 10:10 AM

Hi Rich,

Welcome to the Sclero Forums. I'm so very glad you've joined us. I'm truly sorry to hear about your mom, she's a lucky lady to have you in her corner.

I look forward to knowing you better.
Warm and gentle hugs,

Pamela
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#12 MicheleM

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Posted 08 October 2007 - 10:53 AM

Hey Rich. Sorry to hear of so much trouble in your household. I hope by the time you read this you have had at least one good moment of the day to bring a smile to your face. It must be a very helpless feeling and hard burden to bear right now. This is a great group of people who will listen and try to help when they can. There are all sorts of treatments available now and I hope your Mum has a rheumatologist who is going to treat her with aggressive meds that will get her back on her feet and a smile on her face. It's really important to keep your chin up and then use a forum like this to let it down so you can do all again tomorrow. I send you best wishes from Atlanta, GA.
Michele
Soft hugs your way,

Michele

#13 Webby

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Posted 08 October 2007 - 12:39 PM

Thank you all SO much! Times are tough right now, but it has really meant a lot to me to be welcomed by you all. When you try and explain sclero to people they seem to understand the basics but don't grasp the impact it has - you guys understand properly.

Today our family doctor came to see us. He is a good man and is trying his best to help us. Until we get our appointment in London at the Royal Free Hospital with Prof Black/Denton Mum obviously needs some help. He has arranged for Mum to visit a local 'pain clinic'. Because of her sickness Mum has only been on relatively light doses of morphene because anything stronger may/will make her vomit again. Her vomiting has died down so he feels she will be ready to move up in painkiller strength. That is at least a start. The rheumatologist is being cautious with medication right now because the drug she wanted to give Mum has a potential side effect of lung fibrosis but as mum already has some fibrosis this drug is likely not a wise thing (this is why we are being referred to Prof Black).

I am bursting with questions at the moment! I will start new threads as and when for them though.

One quick question to you all though ... how do you sleep at night? Right now Mum has to sleep almost sat upright otherwise the acid coming up into her throat and mouth is too much to handle as is the joint pain. We get her into position then I prop her up with pillows until she is comfortable (i've got this down to a fine art now!!). Whilst this works, it is hardly a permanent solution. She is also finding that the base of her spine is getting sore from sleeping like this as she is so underweight ([email protected]'6). I was thinking of some kind of orthopedic bed. Anyone tried or got experience with these? What brands are good?

Thank you all,
Rich

#14 debonair susie

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Posted 09 October 2007 - 12:54 PM

It is so great that your family doctor.. plus he seems to want to help your family as much as he possibly can... it never hurts to get help from someone in the medical profession, when it comes to all that's gooing on with your mum. It seems very wise to be as cautious as they are about the pain medication. It's also good news that she isn't vomiting... as tiny as she is, it's important for her to stay hydrated and nourished.
I'm so relieved, in that stepos are being taken to helpwith her better wellness.

A hospital bed might be good, but I'm wondering if it might help to get some lamb's wool... it would not only help with her spine, but with her hips, plus help so she doesn't get bed sores?
Over here (in the US), we have access to medical equipment, either to buy or rent. Maybe someone within our community here, can answer this for you.

My best to you and your family and we appreciate your keeping us informed.

Susie
Special Hugs,

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#15 janey

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Posted 09 October 2007 - 01:01 PM

Rich,
An orthopedic bed would probably be really good for your Mum. I use a wedge pillow and three more regular pillows. I always sleep on my left side because of the position of the stomach. When you are on your left side, gravity helps to hold the acid in. On you back or even worse, on your right side, acid can flow out. Something common to scleroderma is a hiatal hernia at the opening of the stomach. So if your mum has one of those, it doesn't help the situation any.

It took me quite a while to get the right system, but finally found one. When hospitalized a while back I had one of those orthopedic beds and it was GREAT!

Big Hugs to you all,


Janey Willis
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#16 Webby

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Posted 09 October 2007 - 01:28 PM

We have some more help from the doctor today. Mum was sick again this morning but it was only once and despite the sickness has felt fine all day. The doctor has arranged for a nurse to come in and help with mum's botto/base of spine as she is quite bruised and swollen from sitting all the time.

Janey ... this is really interesting to hear that sleeping on your left is better than any other position! Can you explain a little how this can be so!? I am going to tell mujm what you have said and she can try it to see how it goes for her. I've never heard of a wedge pillow before but I've googled it and they look great. Going to order one tomorrow!

#17 jefa

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Posted 09 October 2007 - 10:40 PM

Here is a good diagram which should help you see what Janey is talking about:

Esophagus and Stomach Anatomy

As you can see, the esophagus comes off the stomach at an angle on your right side. There is a bigger bulge of stomach on the left side. Think of holding a water bottle made in this shape: If you tip it toward the neck (sleep on your right side) the water will pour out easier (stomach contents will pour into esophagus). If you tip the water bottle to the left (sleep on your left side), the contents will first flow into the bigger bulge and will need to be turned quite a way before the bulge is filled and water (acid) starts flowing out.

I have a hiatal hernia (called hiatus hernia in the UK) in which part of the stomach is also coming through the opening in the diaphragm with the esophagus. This makes it worse. Even so, since I got my wedge, I have been relatively reflux free at night. I have added two pillows to the wedge: one across the bottom where it meets the bed and one just above it. Then I put my sleeping pillow on top of the line where they both meet. The lower pillow supports my lower back a little more comfortably and the higher one keeps me at a good comfortable angle and gives me room to squish around with my sleeping pillow during the night. I tried elevating the head of the bed with blocks, but it just wasn't right for me.

The sheepskin is also a good idea for bed/chair sores. Sounds like you have an ace general practitioner. Hang on to him.
Warm wishes,
Jefa

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#18 PrincessB

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Posted 09 October 2007 - 11:20 PM

Hi Rich,

I'm so sorry to hear about your mum. She is really lucky to be being referred to the Black/Denton team, they are very well respected. I think I even read on this forum one time about a lady travelling from New Zealand to see them!

Has she tried omeprazole (this is what it's called in France)? That's what I was prescribed for my acid reflux. You have to take it every day for it to work effectively, but it's been brilliant for me. I don't have thickening of the oesophagus though, maybe it's not appropriate. Your family doctor should be able to advise you on that one.

I hope her appointment comes through quickly. Hang in there and take some time out for you as well. B
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)