I need to let you all know why I haven't been around for such a long time. I have been having lots of gastro problems, very delicate so I won't discuss - or disgust - you with the details. On the CT scan of my tummy, part of my right lung showed up and became cause for concern. After extensive testing, ultrasound scans and the like I have been told that I might have lung cancer now. Hey ho !! My SLE is having a long stay in my old bod and I feel crummy.
There have been two attemps to get some biopsies and fluids from my lung. Neither were successful - but oh so very painful - so I have to have a further scan and then see the Consultant who has already said that I have to travel to a mainland hospital and go under and have it done. Worrying in itself because of my lupus, heart and kidney problems and also with my blood clotting disorder.
Can't stay long, just wanted my dearest friends to know where I am and what is going on. I miss you all so much. Take care everyone. I will be back !!
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Goldenwings,
I am at a loss for words. I find hope in the fact that the Dr. said "might" have lung cancer.......I will take the meaning of that to be not sure/may not be. Sorry to hear the Lupus is troubling you so, and that the GI issues have been harsh on you, especially this time of year. I am praying for your safe journey, procedure and return to us here
Hello, Goldenwings. I've been on & off and just caught your update. All I can say is that I'm praying hard that you can work your way through yet one more ordeal. I'm just so sorry that big concerns keep rearing up. I'll be watching for news of you ( & hubby, too, of course) when you get back from your tests on the mainland. Always, with many hugs for you both, Vee
Lovely to hear from you. As I said it is hard not to think "what if" but it is the waiting game now for more CT scans and the like before I go to the consultant and then the mainland.
My darling husband lost his job recently and this is quit stressful as you can imagine. There was no financial pay-off to it either, so working out how to pay bills and the like is getting to us both. We are lucky we don't have a mortgage to pay, that is a big weight off our minds. We are strong together and support each other so we know we can rely on each other.
Have a lovely day my friend.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 11-26-2007 at 04:10 AM.
Stay strong, my friend. Stress is not the best thing, especially for people with lupus. I too, have the blood clotting disorder, so I know how that can complicate things. I know this can be overwhelming right now, but so far, nothing is conclusive. Be sure to make copies of all of your tests for each of your drs. Have your doctors communicate with eachother so everyone is well informed about your other health conditions. It's wonderful that you have such a loving and supportive husband. I don't know if you realize how very special that is. I'll save my story for another day - but I do wish you the very best. Please keep us posted.
Oh yes I do realise how very special my husband is. I admire him so much. He is there for me whenever I need him to be. At the same time though, I arrange for him to have time away from me as he has life to lead. I encourage his interests and make sure that he does what makes him happy. I always say and maintain that "lupus is what I have, it is not who I am" and I try to live my life accordingly. I had the love and support of my parents whilst being a young person and young adult with SLE and for the last 20 years have had the unfailing support of my husband.
I know how lucky I am. Before I met my darling husband, I was on my own as I had had a relationship that was totally wrong and I managed to get out of it. I had no support from that relationship at all, in fact it was a horror to go through both physically and emotionally. That is behind me now though.
I will admit that things are really worriesome now, but I know that it will eventually be worked out. I honestly don't want to sound cavalier about it, it is just that this is the way I manage my life. I am not being offhand about my situation it is just that I have had SLE for well over 30 years, and since being diagnosed at 16 years old, I have worked hard to do everything I can for myself and live my life according to how I am managing on any one particular day.
I also have a nerve and muscle wasting illness, have had heart attacks and a triple bypass and various other things lupus connected going on. I have had two cancer scares before so I know that I just have to wait the outcome. It is hard to do though, but my mind is strong even though at times my body isn't so strong, but I fight to carry on as best I can. I don't say I am more able to cope or stronger than the next person with any chronic illness, it is just my way of living day to day with what is going on with my body. I know that I can work on it and to help others with problems of any kind associated with any of the illnesses I have makes each day worthwhile too.
If you ever need to talk I am here for you. Have a lovely day.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 11-26-2007 at 05:33 AM.
Got a call this morning telling me to go into hospital on Saturday so that my bloods can be brought under control, darned tummy heparin injections. Because of the complications of all the other things I have going on, I have to be in for 5 days before my colonoscopy - drat it !! I told them I can do my heparin at home, but they said "NO" you have to come in. Thought I could get away with another in-stay before going over to the mainland hospital - no way though but never mind. The CT scan of my lung has to be done whilst I am an in-patient too, never rains but it pours.
My darling husband is just relieved that things are going to be under control for me. Poor love once again I am going off and leaving him again. Good job he is so self sufficient, he has to be at times ! He is due to go to a motorbike show that he had made arrangements to attend a while ago and he was going on his bike. Because of my unexpected news, he will now have to take me to the hospital in the car and catch a later ferry and drive to the show in the car instead of going on his motorbike.
Thought I would let you know the latest.
Take care everyone.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 11-28-2007 at 02:02 PM.
May your five days of hospital food:eek go quickly. I hope they do the scan fairly early in your stay, so you can get the results sooner, keep in mind, I am believing for a good result, therefore getting it sooner would put your mind at ease quicker. As for poor hubby.......there is nothing like the wind in your hair and bugs in your teeth, too bad he will miss that part, but not a total loss as he will still get to see the show. Are you going to be able to post from the hospital? Take extra special care (((((((())))))))
Just come on to have a rant and rave a bit. An update on my hospital stay.
I had a telephone call this morning from my doctor at the hospital as I left him a message to say I was concerned about what was happening. He said that the tummy jabs I was railing against doing in the hospital and not at home are in fact not tummy jabs, but 24 hour infusions of blood thinnners before my procedure on Thursday.
Why they got the information wrong is beyond me. It has caused me a lot of anger and worry. Ggrrrr - wait until I get into hospital tomorrow !!
Speak to you all soon.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
I hear you about those tummy jabs. I just started self-injecting in the stomach today and will have to do it until Tues. when I go in for surgery. Not fun for needle-phobic people like me. I'll be in the hospital for several days as well, but by then, you'll be home.
It's been a while since we have heard from you Goldenwings. When you feel up to it, please drop us a line, until then warm thoughts and prayers. P.S. I finally took your advice and recieved a shot for the costochondritis, it is much improved now, and while it wasn't pleasant (the shot itself) it has proven to be worthwhile.
Last edited by realisticchic; 12-11-2007 at 06:37 AM.
Reason: forgot a line
Good news - no lung cancer yaaay !! I am seeing a surgeon on Thursday to discuss options of how best to remove the 'mass' in my lungs, so I will take it from there. I had to have 5 days of heparin infusions stuck into my arm, so I guess it will all happen again for my surgery. Yuk !
The stay in hossy was fraught with problems, but at least I had all my biopsies taken from other parts of my old bod after a few hiccups with the treatment beforehand. I am really very tearful and feeling low, though I am over the moon to be free of cancer. Strange the way we react isn't it ?
Realistic I am so glad you are having some relief from pain of costo. I know the jabs hurt like billyho, but they are well worth it my friend.
Thank you all so much for your love and thoughts. My darling husband appreciates your good thoughts too. He is so, so relieved and I am thankful he doesn't have too much more to put up with. He needs a break from this. Take care and I will speak to you all soon.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 05-03-2008 at 05:37 AM.
Wonderful news concerning the negative on the lung cancer! I hope all goes well with the surgeon appt. on Thursday, will be thinking good thoughts. Hopefully things will settle down for a little bit and give you a chance to rejuvinate emotionally so to speak. Best wishes to you and hubby
Well Goldenwings my heart breaks for you but at the same time I admire your strength and perseverance. I am so glad you have a supportive husband and that you don't have cancer. I am sorry for all the hard times and illnesses you have gone through with this disease. I will pray out my whole heart for you .
I have been away from the boards for a long time and I am hopefully going to get back as often as I can. Your post has given me the impetus to do this.
I must say I am lucky in that I do know and can distinguish what is connected with lupus and what is not. When I am sure of this, I will not be fobbed off with "oh, it's because of your SLE".
This is why I have always said to people I speak to on these boards that they must ask and ask questions and get the answers they need. It is all too easy for the doctors to put things down to lupus and in a lot of cases, it turns out to be something that has nothing at all to do with it.
If you are not satisfied with the answers you are given, or if indeed you don't understand what is being said, ask them to repeat it. More than once if necessary. After all it is your body and you need to know and decide what is gong to happen to it.
If you ever need any help or just need for someone to listen to you, then you are in the right place. Everyone here is so loving and supportive. We all speak from experience and do it in a way that can be understood by others.
Take care
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Oh, golden I am so glad to see your post. Blue and I were just posting the other day how much we miss you. How are you doing my golden friend and how is your compassionman? I have missed large chunks of time away from these boards and thought I had missed some news from you. It is so hard sometimes to check in here and see what is going on. You have been in my thoughts these past few weeks as the doctor upped my prednisone to try to get me past a flare and of course I think of my good friend goldenwings whenever anything about my prednisone is going on. Little did that doc know that you had given me that sage advice long ago and I do it when necessary.
I send my gentle hugs and lots of love to you and compassionman.
Thank you for your lovely words. I have been having lots of problems - most of which are unfortunately SLE related - and I was and indeed still am thinking of how best to share things without upsetting or worrying my friends or anyone else who reads the boards.
I have posted a new thread and explained some things to all who know me.
My compassionman is doing ok, still not working but coping at the moment. I am there for him no matter what and we are getting on with things.
Please read my latest post when you can. I think it will explain my absences over the last few weeks.
Lots of love and keep well.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 05-04-2008 at 04:48 AM.
Reason: misspelling
Hello from goldenwings 
. I find hope in the fact that the Dr. said "might" have lung cancer.......I will take the meaning of that to be not sure/may not be. Sorry to hear the Lupus is troubling you so, and that the GI issues have been harsh on you, especially this time of year. I am praying for your safe journey, procedure and return to us here
Re: Hello from goldenwings 
. I hope they do the scan fairly early in your stay, so you can get the results sooner, keep in mind, I am believing for a good result, therefore getting it sooner would put your mind at ease quicker. As for poor hubby.......there is nothing like the wind in your hair and bugs in your teeth
, too bad he will miss that part, but not a total loss as he will still get to see the show. Are you going to be able to post from the hospital? Take extra special care (((((((())))))))
. When you feel up to it, please drop us a line, until then warm thoughts and prayers. P.S. I finally took your advice and recieved a shot for the costochondritis, it is much improved now, and while it wasn't pleasant (the shot itself) it has proven to be worthwhile.
