i'm indra23,just joined yesterday.i will type lowercase alot because my hands always hurt.trying to figure out how to get fonts and stuff to work am a computer dummy.anyway have had sle for 23yrs.just went on disability 1yr. ago,after being an r.n.,researcher,teacher,my working career.i have found that my life revolved around work and family,and 1 good friend. i related to the agoraphobia question because i barely leave the house anymore. driving hurts walking hurts heat takes a toll (live in fl),so it's just not worth it.so i'm always alone until my husband comes home.by the way he is one of the great ones.so i am very lonely,and in 23yrs. of lupus,and now ddd,diabetes all steroid use for23yrs.plus disability trys to kill you in the first 2yrs.cause they won't give you medicare for that long,so i pay for everthing including meds, docs,food clothes,on my whopping $900.00 a month.thank the creator for my husband,whose job is now being phased out.but i have so many non material things to be grateful for and i try and remember those.boy do i type poorly,i apoligize.spelling too for a college educated person.so enough about me ,thanks for letting me vent.i feel less like i am suuffocating in a cocoon.with love indra23
I just joined this message board today and I'm not going to claim to be full of answers. I will say this, everyone on here seems to be going through their own difficulties and I think we all have questions and probably ay times feel lonliness because no matter how many people you have in your life that care about you, when you are sick you are the one it's happening to. Now you said you have a good husband and that is wonderful. Many people do not have that. If he is a good one like you say then he is probably in pain when you are in pain, I know my boyfriend has felt my pain since I got sick. Remember that and take care of him. Taking care of someone else even when I feel the worse always makes me feel better. All I can really offer you is the idea to pray and have a positive additude. It's all about additude whether you are talking the illness or financial problems. If you pray and believe then things will change. I know I am going out on a limb to say that but it is my belief. Good luck to you Indra and God Bless.
Just got back on herre myself after being unwell for a while. Pleased to meet you.
I just wanted to say that I know absolutely how you feel about loneliness. I have had SLE for over 30 years, so I have 'grown' up with it. I have other serious medical problems and disabilities going on and sometimes get very frustrated. I had to stop working, which I miss tremendously, not only from the monetary aspect of it but for the company I had each day. I don't have that company now. I spend a lot of time on my own and it does get very lonely at times. My husband though, like yours, is absolutely wonderful. He supports me in everything I do and helps me in every way he can. I know if things were the other way around, I would do the same for him.
I don't get out much because I can't walk too far and to go shopping is a no no for me, and when I do go out it is with my husband as I don't drive. I am though independent as much as I can be as I don't want him to feel that he has to be worried about me all of the time. I honestly know that my husband does what he does because he wants to, not because he 'has' to.
I don't get any monetary help either, because my husband goes out to work and ridiculously my needs are not taken into account as an individual, they assess monies coming into the home as a joint income. Makes me so mad.
Thing is Indra, here you have found a wonderful place. We all have lots and lots of time, patience and understanding and we offer it to each other. Whenever you feel down in the dumps, come here and vent or laugh and cry, we will be here for you when you need us.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 09-11-2007 at 06:42 AM.
Hi, Indra. I just want to add another WELCOME. I'm glad you found us & hope that you check in here often & post often. The thing that most amazes me about the people here is how varied we are: someone always seems to have something to share on any subject, so you've definitely come to the right place! And I'm sorry for all the extra worries you & your husband are having now. Bye for now, with my best wishes, Vee