PDA

View Full Version : Friend of Lupus sufferer: new to the forum and lupus



juno
01-09-2009, 03:55 AM
Hi,

I don't have lupus but one of my very close friends has just told me that he has had lupus since he was 18 (he is now 32) He has also told me that this is the reason he doesn't think we should date.

When he told me I wanted to find as much as I could out so that I could give him all the support he needed although he has been in remmision for a few years now and I didn't even know he was sick.

I'm hoping that by joining this forum I might be able to get a better idea of what my friend is going through and also try to find out why he thinks having lupus should stop him from having a relationship

KathyW1958
01-09-2009, 06:11 AM
Hi Juno,
Welcome to the forum. Your friend is very lucky to have you as a friend. It is good that you have come here to find out as much as you can about Lupus. My name is Kathy and I have SLE, Lupus. I have had this illness for about 45 years. I feel bad that your friend feels that he can not have a relationship due to this illness. He should be able to have a relationship. I am married and have been married for 26 years. My husband and I have raised our two children together and they are now grown up and on their own. Yes Lupus is a hard illness to live with, but you can still lead pretty normal life. They have really good medications available to treat Lupus. There is no cure for this illness, but maybe one day there will be. Like I said your friend should be able to date and have a normal life. I hope that you keep posting. There will be others that come in here and they may have more information for you.

Hugs,
Kathy

rob
01-09-2009, 06:50 AM
Hello Juno,

My name is Rob. I am 40 and was diagnosed with Lupus five years ago. I wish there were more people in the world like you. For whatever reason, people don't seem to want to know anything about this disease, nor do they want to attempt to understand what it's like for those who live with it.

I have had opportunities to go out on a date a few times since my diagnosis, and although I really wanted to just say yes, I found that I just couldn't do it. I'm not in any sort of remission, and have active "flares" as we call them, on a constant basis. Despite that, I look somewhat fit and healthy, and most people who don't know me would not know about my health problems.

I've thought about it alot, and I guess for me it comes down to two reasons why I feel like I cannot get into a relationship. The first being self preservation. I was dating this girl for six years, I popped the big question, and she said yes. We were a month away from the wedding, when I got the diagnosis. She told me one day that she needed to be with a man who had a future, not some guy who would be dead in a couple of years. Her family started saying terrible things about my work ethics, and me personally. I thought these people were my friends, and we always got along well. And then one day, she left. I had been having all sorts of strange, debilitating symptoms before the diagnosis, and was having to cancel all the time on going out, or socializing. My employees started to see something was wrong with me. My ability to manage my small business was rapidly going away. It looked to others that I was lazy, or incompetent. Truth is, cognitive dysfunction, or "brain fog" as we call it, was robbing me of my short term memory, and ability to speak, and to properly write and spell. The emotional pain of being abandoned after six years together, hurts to this very day, and I can't risk, or even survive going through something like that again.

The second reason is that Lupus wreaks havoc on a persons life, and I don't want to subject anyone to my bad days. Maybe your friend, knowing how bad this disease can be when active, feels the same way. He also might not want to risk loss if he ever stopped being in remission. Lupus can be terribly hard for spouses and family members to deal with. Perhaps he feels that he want's to spare you that, if he ever got sick again.

I hope my rather long winded answers give you a bit of help. I think your attitude, and supportive nature are really a great thing. Coming here to learn so you can understand him better is something most people are not willing to do. Like I said before, I wish there were more people in this world like you. Please make yourself at home here, and ask any questions you want, we're always happy to help however we can.

Rob

karli1238
01-09-2009, 09:16 AM
I just wanted to say welcome and I wished I had more family and friends in my life like you as most of mine don't think I'm sick. I hope that your friend realizes how lucky he is to have you in his life.
And welcome again!

iseedeadmonkeys
01-09-2009, 09:19 AM
Hello Juno,

like kath says it is good that he has a friend like you, i wish that it was that simple sometimes, ive had the chance to date also and i hope a lovely girl comes into my life at some point too, but right now? i couldnt think of anything worse than to be having a relationship with someone, maybe because of the flare? im not sure all i know is i dont want to be a burden on someone because there is times when il arrange dates and stuff to do and i actually cant do it, its a waste of time, i hate explainiing to ppl why i cant do something, i think it would be too much for someone to handle, i mean they aint just gotta get to know me! they gotta get to know my lupus too!

You can do normal things yes in life, but u also gotta tame things down too suit the needs of this stupid lupus stuff,
but hey thats another story!

take care
x

Angel Oliver
01-09-2009, 11:01 AM
hello n welcome.

love
angel.xxxx

toyasBOY
01-10-2009, 03:35 PM
:?: hi my name is kyle. my girl has been diagnosed with lupus for about five years now. today is our one year anniversary and im just needing some info. the week before christmas she had a bad flare up i ended up having to take her to the hospital bc she couldnt stop vomitting. we spent two days in the ER and put 5 liters of fluid back in her because she was so dehydrated. she has gotten a lot better since then but she still has a continuing headache along with some minor vomiting. now what would be some good food that she would be able to keep down. she has to take multiple medicines in the morning bc of the lupus. ive been reading as much as i can. she is nervous that she wont last the year. im at a lose can anyone help with any advice. [/quote]

mountaindreamer
01-10-2009, 03:41 PM
Hi juno, and welcome to the site. You will find a lot of knowledgeable people here who are compassionate and non-judgemental. If you ever have any questions about tests, symptoms, or anything, this is the place to come.

I too am in a long-standing relationship that was severly effected by my Lupus coming out of remission. My boyfriend is standing strong right now, but I am prepared for him to walk at any time.....I will not blame him if this gets to be too much. Anyway, it appears to be extremely difficult to give your heart while at the same time, preparing for it to break.

Best of luck, i agree, your friend is very lucky.

share a smile today.

Saysusie
01-12-2009, 06:24 PM
Hi toyasBoy;
It might help if we knew what medications your girlfriend is taking. There are some medications taken for Lupus that can cause nausuea and vomitting. Did her doctors go over her meds with her when she was taken to the hospital?
Sometimes, changing the time of day that meds are taken or taking them with or without food can help to ease the nausea. It is so difficult to say without knowing what meds she is on.
If her vomiting is not caused by meds, there are so many other issues that can cause nausea and vomiting. Here is a website that goes into some of those issues:
http://www.jasonprogram.org/nausea_treatment.htm
In the meantime, I can give you general information about dealing with nausea:
The mainstay of home treatment is for her to drink fluids. Fluid intake helps correct electrolyte imbalance, which may stop the vomiting. This means drinking fluids, which may be the farthest thing from her mind. But it is vital to prevent her from becoming dehydrated agian from fluid loss.
She should start with small amounts, such as 4-8 ounces at a time, it is easier to drink fluids in smaller amounts, but more frequently. Only use clear liquids (such as clear soup broth, juice, lemon-lime soda). If you're not sure if it's clear, put the liquid in a clear glass bowl and try to read something through it. If you can't read, it's not clear.
Avoid milk and any dairy products. They can make nausea and vomiting worse.
She can then work her way up to soft foods - gelatin, oatmeal, yogurt, and similar soft foods and go back to liquids if the nausea and vomiting returns.
If you think she is getting dehydrated again, try these options:
1) First, let her eat ice chips and clear, noncaffeinated, nondairy liquids such as Gatorade, ginger ale, fruit juices, and Kool-Aid or other commercial drink mixes.
2) After 24 hours of fluid diet without vomiting, she can then begin a soft-bland solid diet such as the B.R.A.T. diet: bananas, rice, applesauce without sugar, toast, pasta, and potatoes.

I hope that his was helpful to you. I hope that she feels better and please know that you can come to us at any time. We will always be here to help you. She is very lucky to have you and I admire your willingness to help her.

Peace and Blessings
Saysusie

Danica01
01-13-2009, 11:37 PM
Welcome Juno and let me say that you are an amazing friend :!: It is very hard at times for people with Lupus to get the love and support they need from friends and their families. Lupus is a very hard disease and can be hard to understand when you are on the outside of it. By taking this step to become a bit more educated you are showing your friend that you want to help and be there for him :D Be patient with him and hopefully he will see over time that you are not going any where and you want to be there for him during the good times and the bad times. The love of my life is Tim and when things are bad for me I always fight the urge to push him away because I think he should have someone who is not sick. However, at the end of the day he is the one who is still here and rubs my back when I need it. It has been two years for us and I have to say it takes time for trust to develop. Keep talking to him and ask questions and let him ask you questions. It will work out for the best one way or another, I promise :wink: