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Old 08-30-2007, 12:26 PM   #1
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Wink Goldenwings - Snoozy calling

Hiya Goldie, now we are on the right board, I would like to know more about Lupus. You say you've had this illness since you were young, how did the docs find out? What were your first symptoms? How old were you? Sorry, sorry all these Qs, but I would like to know how you and your parents managed with this condition?
Obviously anyone can join in my quest for knowledge and you are more than welcome. I've never heard of this condition and would like to know more. I hope you'll be part of enlightening me. Hugs to all Snoozyowlxx

 
Old 08-31-2007, 07:42 AM   #2
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Smile Re: Goldenwings - Snoozy calling

Hiya snoozy,

I am n the way to the blood clinic, so I can only give you a few facts at the moment.

I was 16 yrs old when first diagnosed. I had been unwell, falling over and so on for a while before that. I was on the athletics team and I would fall for no reason. The docs took me into hospital and within 4 days diagnosed my SLE. This was over 30 years ago so it was hard to come to terms with. For a start the medications weren't available as they are today. I was put on steroids - which I have been on on every day since - and these saved my life.

My parents were tremendous, and helped me every step of the way. I also had at the same time JRA, and this made my body go into a full foetal position and I couldn't move for quite a long time. My parents had to travel to see me, it was so far they could only come at weekends, it was so very hard. Plus I missed out on all the parties and things you do at 16 !!

My Father gave me physio every day, my Mother was always there to hold me when I cried and I knew they both loved me so much and this gave me the encouragement I needed. They were told I would never walk, work nor would I lead a 'normal' - hate that word - life, but we all discussed it and decided we wanted to prove them all wrong -which we did !!

Must go now, I will be back soon hee hee !!

goldenwings
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Old 08-31-2007, 12:58 PM   #3
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Re: Goldenwings - Snoozy calling

Hiya Goldie, thank you for sharing with me. Hope all is well with the blood work. Do you know, I can't really express in words what I'm feeling right now. I'm appalled that anyone has to suffer the way you have, to have this condition start at such a young age and 30 years later, still no cure in sight, then to have fibro as well as lupus. Yet you continue to support people like me that have a lot less to contend with, Golden Girl is indeed a very accurate discription of you. Please continue to enlighten me on this condition, if you don't mind, I would appreciate the oppotunity to know more. I have the utmost respect and admiration for the way you respond to what is happening within your own body, you are a very strong and remarkable lady. Take care Goldie, keep as well as you possibly can, tenderest and gentlest of hugs to you. Please keep posting Snoozyowlxxx

 
Old 09-02-2007, 05:15 AM   #4
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Smile Re: Goldenwings - Snoozy calling

Hiya snoozy,

Unfortunately my lovely parents are not here now, they were my love and inspiration. I had a very lone time of 'coping' on my own without any love or understasnding. Now and for the last almost 20 years I have the most fantastic, loving, adorable, caring, supportive man in the World. We marrid 18 years ago and it is one of the bnest things I ever did. He is my rock and I love him to bits. He takes such an interet in everything that goes on with me and all of my treatments and so on. He takes me to my doctor and hospital appointments if he isn't working. He sits and discusses things with the doctors and he has a vast knowledge about everything that happens to me. He is superb. He is not in the best of health himself and I so admire him for the way he 'copes' with me and what happens but we help each other and it works for us. I am so lucky. Love and support are so important for anyone who is unwell I believe. The actual hands on way of this I only have only had from my parents and my husband. I found support from talking and sharing here on the forum and it is lovely to know other people care.

I think by telling of my life with SLE I can help others not to be too frightened by things that can happen to us on a daily basis when we have have lupus of any type. I want to share because I know how terribly scarey it is and also know that I can talk about it in a way that is from my own perspective and I can say things in laymans terms, so I hope I can help others who have it learn about it in a relaxed way.

There is no doubt that it is life changing, but it isn't something that is my life or 'who' I am. It is something that is yes a part of my life but also it is something I personally work around to the best of my ability. It is there and although at times I can be extremely unwell, other times I go into into remission and take advantage of this too. It is of course a chronic illness with no cure, but with love, support and the right care from their doctors, lupus patients can lead long and productive lives.

I was very lucky in that I was diagnosed after such a short term of hospitalisation - 4/5 days. I have learned from others on this forum that they are still waiting after lot of years to even get a diagnosis. Believe me it isn't a diagnsosis you want, but this amount of uncertainty only adds to the stress and stress is a bad thing for lupus. I am lucky that I have control in the main of my medications for my SLE i.e. up my dosages when I need them and juggle about with them when things are more under control. The doctors agreed after much pushing and arguing from me that as I have had it for such a long time and only I know my own body and how it feels at times that I know what I am doing when I do this.

To backtrack a bit - when I was 17 I left the hospital after being in there for 8 months and eventually got my body to a state that I could actually use my bits that had gone to seed. My home physio by my Father started to pay off and I eventually started to walk again. I had been encased in a plaster cast from waist to ankles whilst in hsopitl and stillhad to try to exercise. It was agony and the sheer heaven of having that taken off was indescribable. Made learning to walk very difficut though as I had little sparrow legs by then hee hee !! I did it though. I eventually got a job which progressed to having a wonderful career. I had to stop working some 10 years ago, that wasn't only because of my SLE though as I have got other serious medical conditions going on too.

I was diagnosed with a nerve and muscle wasting illness about 15 years ago which is the bane of my life. This has changed my way of living, but I have had to adapt. My body doesn't respond to the messages from my brain as the nerves have burned out. Therefore the muscles aren't told to work and are wasting away. It is the twin of MS, but a different part of the nerve is affected but causes the same problems. The name of it is hardly known and therefore it is not given much attention to by the medical world unfortunately. I have had a full left arm bone graft to enable me to use that arm a little. If I think something is going to benefit me then I will go for it, if not then I leave it alone. I am due to go for another brain scan next week and although I know there is no cure for this annoying and progressive thing, I can then work out how I can alter the way I do things to enable me to have a better quality of life. Hey ho again it is part of who I am, it does not define me and I get on with my ife.

I have had heart attacks and a triple bypass. I have APS which is blood clotting disorder. A couple of months ago there were panic stations because I had multiple blood clots in both of my lungs which were of a serious nature as you may gather. 18 months ago I had pre-cancerous lumps in my tummy, they were removed and I am still here to tell the tale. Honestly snoozy I could go on and on, but this is all part of my life. I think as I have been 'unwell' for so many years, it is easier for me to have a fight and hopefully win the battle. I am not moaning about my life, I get on with it the best way I personally can, I so want to help others to do this too if I can help them in any way.

A lot of people though aren't in that fortunate position and need love and support and I hope I can offer this to them. As I said I don't define my life by what I have got wrong with me, I work on making things as comfortable for myself as I can. If I can help others to do this bit by bit, then I am so happy. I am lucky that I have control in the main of my medications for my SLE as the doctors agreed that as I have had it for such a long time that I knew what I was doing.

I could go on and on snoozy, but this is just a little of my own personal story of SLE and the other things that I have of course and my own way of dealing with things. If you want to know anything more specific about SLE let me know. Hope it hasn't been too boring for you and others who might read it.

Have a lovely Sunday. Take care

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 09-02-2007 at 05:29 AM. Reason: needed editing and re-editing

 
Old 09-03-2007, 05:18 PM   #5
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Re: Goldenwings - Snoozy calling

Hi Goldie, I've had a rough few days. Thank you so much for sharing that info and it was not boring at all, if anything it gives me inspiration and determination to not be ruled by fibro and to try and make the most of the capabilities that I have left. Although I'm still in the 'grieveing' stage, I am trying to build a new way of life. Would like to know more about SLE, you say you could 'go on and on' and I must admit I find the amount of problems you have had to overcome frighening, I figured you were roughly the same age as me, 45 years old give or take a few years. If that is correct, surely some of the problems you have encountered must be connected to other conditions like SLE/Lupus, or have I got all wrong. By the way the stretches are still going, although it was a bit difficult with a flare going on, but I persevered. My kids also got me a book called living with fibro and I'm ploughing my way thru it, what an eye opener that is!! Chat again soon Goldie, you take care and try to keep well, lots of hugs and warm thoughts to you and your lovely hubby, Snoozyxx

 
Old 09-04-2007, 04:20 AM   #6
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Re: Goldenwings - Snoozy calling

Hiya snoozy,

Sorry to hear that you are unwell at the moment. Take it easy if you are able. Don't stress yourself out if you can't do a,b or c, let someone else do it if they are willing. Must be lovely to have family to do this if they are able. Been real unwell over the weekend myself, so not going to post much today.

The other problems I have 'might' be lupus connected. My heart problems point in that direction, the kidneys a definite 'yes' and other internal bits are most probably not helped because of it. My nerve and muscle wasting illness also points to SLE being a 'contributory' factor, not necessarily causing it though. Other things though are things that people without chronic illnesses get so I don't think of it that way, I hope to be able just to get on with things on a day to day basis.

All these things though are what happens to me, and I wouldn't want anyone to else to worry that it will happen to them, I have been rather unlucky in this respect but life is for living not for regrets I think.

This is the thing though, a lot of doctors put almost everything down to a main illness. This is why I push and push to get answers, because in a lot of cases it isn't anything to do with the main illness and the doctors have to be less blinkered when it comes to diagnosing things.

Well I am going out today, my husband is not working so a car trip to the beach to watch the crowds is in order I think. I cannot go in the sun for more than a few seconds but I love it for everyone else. Ice cream later too - yummy !

Take care and have a lovely day.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

 
Old 09-04-2007, 02:40 PM   #7
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Re: Goldenwings - Snoozy calling

Hiya Goldie, still managed to do my stretches today, hubby is on the mend too, which is great news. Wasn't worried about myself regarding all the Qs about the connection 'tween SLE/Lupus etc, just shocked at the amount of suffering you are going thru and the way you are able to keep going with such a positive outlook. I agree you've been extremely unlucky in that respect. You have a wonderful day at the beach and keep yourself well as much as you can, keep in touch Goldie, feel better soon. Many warm thoughts and hugs to you both, Snoozyxxx

 
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