Second glass

[MariaK]

Hi guys,
On my second glass of wine; you know that part when you start feeling ill and wondering why you cannot take your drink anymore? I need the painkillers because I have had a flare over the last four days, but I am sick of taking tablets. Plaquenil is fine, but the surgam makes me puke. Shall I omit the surgam and finish the wine? I know I can't. :shrug:
The surgam stopped working after a week, but I am still taking it whilst I wait for my rheumatology appointment. I think I will start having to take the stronger stuff because this ain't working.
I had my eyes "plugged" four weeks ago because my tear glands are ******ed. My opthalmologist suspects Sjogens or similar. Fantastic. Now my eyes won't stop running because of the plugs, which means my make up runs off to reveal my rash. Great! My patient's now think I am an emotional wreck aswell as rashtastic! :afraid:
I was trying to talk to my chap last night, but he shut me off again. He is coming home from work and going to bed, avoiding me. We are supposed to be getting married next year, but he can't handle what's happening to me.
I got talking to one of my patient's who has had lupus for years the other day. I hoped I helped by sharing what we had both experienced. It felt nice for me aswell, to relate what I was feeling. :nurse:
I don't know why I am pouring all this out, I guess I need to get this off my chest, and I don't know what response I will get, if any. Has anyone else been where I am? Come to think of it, does anyone know of any waterproof make up?!

[busylizzie]

Hi Maria :wave: Vent away that's what we're here for! We all need to do it sometime. :tantrum:

I don't have the problem with my eyes like you but I have been to **** and back over the last year while I was getting diagnosis. I've also had the problem with hubby and relatives who have shut off from me, particularly hubby in the earlier days of Lupus but he didn't seem to realise he was doing it. Guess they're struggling to deal with it as well but it doesn't help does it? Does your chap have anyone to talk to? I know men aren't good at that sort of thing - mine certainly wouldn't think that he needed to talk! I hope he comes to terms with your illness and that you can go ahead with the wedding next year.

I definitely know where you're coming from with the wine! :cry: 2 glasses and I've got a hangover the next day! I used to really enjoy a drink or two socially! :wacko: My friends can't get used to it at all!!

I hope things start to improve for you soon and that you get some support from your chap.

Sending you big hugs
:flowers:

[rwb200]

Wanted to add a reply as one of the Husbands out here.
You may just need to give him a little time, many men get quite when we are trying to deal with things and trying to figure them out in our head.
When we are doing this it is hard or even impossible to talk about.
If it goes on for long you may need to nudge him a bit to get him to talk. It can be very hard for us to admit that we are not as strong as the outside we put on and we get scared as well.

Hopefully he has someone he can talk to or some way that he deals with things to figure them out as best he can.
I bury myself in reading all I can on the subject to try and learn and find an answer. It can be a very hard lesson to learn that not every subject has an answer and that we can not fix everything.

[busylizzie]

Thanks for your reply - it's interesting to read a male point of view! I appreciate that partners of Lupies have a lot of issues to deal with as well and have to learn to cope with the situation but when you're desperate for emotional support and the person that you turn to first and foremost cuts off completely, it's so very difficult. We can't read your minds and don't know what's going on in there! I needed an arm round me and some reassurance and most of all, I needed to talk to the person I share my life with. My hubby has been very good in other ways, helping round the house and ferrying me here and there so please don't think it's all bad but those first few months were so hard with little emotional support. I guess we both needed to come to terms with the situation but, being male and female, we both do it in completely different ways! :huh:

:flowers: :flowers:

[sleeping angel]

I was dx in 2001 with SLE, Fibromyalgia, APS, and on and on....the last few years CNS has played havoc on me. Something that really hurts me is my man is still in total denial of my condition. At first he was sensitive to what was happening to me. Yet wanted nothing to do with it still doesn't. Then relations stopped. I confronted him, he said he was afraid he would get it, and also did want to cause me any pain, knowing that I was in constant pain. I have given him reading material, given him web sites, and mostly (wish) he would come to the doctors with me to understand. I have done my whole life alone, I thought we had a good thing, it was long ago, but it has withered away. I remember my last Rhuemy appt. after being examined, I always meet my dr. in his office there are two chairs there, in front of his big desk. As i was waiting for the dr to come in i looked over to the second chair it was empty, my eyes filled with tears, I am doing this on my my own too I though t to myself and it stinks, like busylizzie said just to have the arms of support. My family is vey small, and they don't know how to react with me so they just stay away, My mom is finally coming around a bit. My 19 yr old son is the one who understand the most , but he is the child he has his own life , as a matter of fact he just move to florida, I miss him sooooo. My 22 yr old daughter tries to understand but i think she finds it to painful, to see her mom and best friend going thru this. The other day she finally asked if i needed a ride to the neurologist in the city. So she drove me in ( since I cannot drive at this time).
She was very supportive. on the way home she said, mom i a glad i came with you, I really need to, it helped me to see things i didn't want to understand or deal with. She made me laugh, she said look I think now I can help you with the doctor things but not the hospital things. I said honey thank you, for all you do for me, just for being you, I want you to understand like your brother you have your own lives. Any way sorry I am going on and on, but if I could wih on a star the wish would be that my guy would come back into my life. But I do understand that it could be that he is afraid , esp. seeing me very ill at times. It takes a certian person to deal with what we go thru. I respect him, yet I miss him sooooo :( . I must say one thing he still does for me is cook, he trys. I guess I must be thankful for what I have and just deal with the rest and worry more about getting me out of this flare.
I am Exhausted, and teary at the moment, I wish i could go into the room now and just snuggle, but I know i will get no response...so I will go say my good nite prayers and then dream of better times.....thanks for listening.
Good nite,

Deb

[busylizzie]

Deb, I really feel for you - this life can be so lonely when you don't get support from your family. We all need a hug at times like these and it's tough when there's no-one there for you - even tougher when there is someone and they're cutting you off.

I really hope things improve for you.

Take care :flowers:

[MariaK]

Hi Deb,
I have a similar problem too. He finds it hard to come to my appointments, so a lot of the time I just find myself going without mentioning or asking him whether to come, in case he feels awkward. The other thing you mentioned has happened too. He's scared he is going to hurt me, and I guess that what he feels generally. He is scared of saying or doing the wrong thing.
I guess our partners are as scared as we are? :afraid:
Sending my love xx