View Full Version : new member and frustrated.

07-28-2009, 07:00 PM
Hi Everyone,

I am new to the site. I am 27 years and have lupus, lyme, strep, bacterial infections and many other problems. I am very frustrated because I do not know what do about my husband. He is not very supportive, and just went to his first appointment (I've been going to the dr for 8 years). I am now fighting for ltd and ssd and he continues to add pressure to me saying that I need to find income and that we will not make it. It makes me sad and upset...worried...scared. It can also put me in a flare. The thing is I have been advised not to work at all because I am being investigated and ssd and ltd can take awhile.

So I guess my questions are: What am I suppose to do while I wait for LTD and SSD? What can I do about my husband who isn't very supportive?

I think I have the same problem a lot of people have "You don't look sick...u look fine"

Thanks yall and take care!:cute:

07-28-2009, 07:17 PM
hi jcg196,

welcome to our family....you will find a lot of common ground with our members, and we all help each other face the daily trials that we face.

so sorry to hear about your husband...hopefully he will come around and truly understand what is going on with your body.

you will find sincere compassion and incredible knowledge here, and i am glad that you found us.

07-28-2009, 07:25 PM
Thank you!!!

07-28-2009, 07:33 PM

First. let me just say that you'll find great support here, no matter what situation you're in.

Secondly, as one of the few men on this forum, let me take a stab at giving you some guidance from a general male point of view. I'm not saying it's right -- but it MIGHT help you feel a little better about the tough situation you're in right now.

First, your husband is, I would venture, scared. He doesn't want to lose you, he doesn't want you or your situation as a couple/family to change, and on and on. You probably can't do all the things you used to do, and that both frightens, angers and frustrates him.

So what do you do? Well, you can try reading some books on how to communicate with your spouse -- the old classic "Men are from Mars, Women are from Venus," is a good place to start. For a more religio-philosophic view, try "When Bad Things Happen to Good People."

Then try using some of the techniques you've learned to broach the subject with him. Gently. Take care not to sound like you are whining or criticizing. But do let him know how his lack of support is making you feel, and what the two of you might be able to do to make it better for BOTH of you. Over time, try to find out how he feels about your situation, and offer some solutions. And don't give up if he pulls away a little every once in a while. My wife - who has a lot of male tendencies - has done that to me at times, but she always snaps back. He will, too, as long as you don't 'chase' him when he needs to pull away.

Whew. It's late, I'm rambling, and I'm probably past the point of value-add here. But keep trying, keep hanging in there, and when you need to vent, come here.


07-28-2009, 07:53 PM
Thank you Brian for your email. It helps to talk to people about it and to know u are not alone. I will def read that book to gain better insite and try to have my patience with my husband. Take care! :cute:

07-28-2009, 08:25 PM
JCG..Finances...there is a financial section inthe forum. Check it out there maybe money saving ideas there....prescriptions, insurance...

It also has info about applying for disability and etc..check it out. The evaluation process and etc. Have you hired a lawyer for applying for SSDI? If not, do...they don't collect unless you do and there is a flat rate. I posted info in that forum too about it...

You can explain the Spoon theory to him...or even print it out...http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Perhaps counseling..marriage, communication and too, for those with illnesses.

I don't know what your income is, or if you own a home, but there are many programs city and states offer...discounts on monthly phone, electricity, winter heating bills, weatherizing your home..property taxes....check on that. You may qualify.

It is a start...hope it helps.

Be well..keep well.

07-28-2009, 08:44 PM
Hi Oluwa,

Thanks for the article it was very good. Yes I have a lawyer and I have to apply for SSDI, I only applied for long term disability and got denied.

We just bought a new home in November. When I was working our family income was 100k, now it is cut in half.

Thanks for all the tips and advice I really appreciate it!


neL :cute:

07-29-2009, 05:51 AM
Welcome JCG,

Glad that you have found us... there are many of us that can relate to your issue... I understand about not being able to work and worried about a new house... My huband and I bought our new house about 4 years ago and just this feb I had to stop working... I am waiting on disability myself....I however don't have a dignoses yet I am still in the waiting... But I know it is coming...

Sorry to hear about your husband... I know how difficut it can be, I myself have had times with my husband...It can be very hard... Being sick changes your whole life and there can put a strain on any marrage...He has to be scared and worried... I know my husband is, and even sometimes he says the dumbest things about my illness...I know it may be hard but you must talk to him about how you feel...I know a few weeks ago I had to sit my husband down and we had to have a talk about (sex) it was very hard but I am glad that I did it... But I got alot of support here before I did which helped me...

This is a wonderful place and all the people here seem to understand so well and help with all kinds of information... please take time to look around and read the post...

If you need to vent about the hubby we understand many of us have vented about spouses, kids family, friends, ect...

If you want someone to talk to just message me I am here for you and understand....

take care

07-29-2009, 08:20 AM
Hi jcg - I felt like I was reading a post that I wrote! I have been battling lyme (and babesia) for 2 1/2 years (and many years trying to get diagnosed). I have always been very susceptible to terrible strep throat as well, even after getting my tonsils out. And I get many other infections easily. I recently found out I have Lupus as well. My husband attempts to be supportive when I am openly upset or mad but other than that he tends to act like there's no problem.

Would love to talk to you more about your treatments, etc since we, unfortunately, have so many problems in common. :(

Welcome to the board - I haven't been on here long but everyone is super nice and supportive!


07-29-2009, 08:48 AM
Hi jcg,
I was just wondering how much your husband really knows about your disease. If he thinks you can work when you tell him you're too sick then he probably doesn't understand the disease very well. I would try educating him a little at a time. There are some great books around, but I would try downloading some quick facts information from this site and maybe the American Lupus Foundation site. The more you can teach him about your disease the mor he'll understand you. I hope this helps. Good luck.

07-29-2009, 12:22 PM
Hello jcg
Welcome to the site. You have come to the right place to find support, understanding, cyber friends, and love!
All too often I have read where spouses don't understand or are not supportive OR the Old you look fine you don't look sick. What the heck does sick look like...DEATH? People with AIDS don't look like they have AIDS until they are in the hospital dying so that is crazy to say that. Lupus is not the flu it is an auto-immun disease and to know how and what it looks/feels like you have to read up on it. People with RA don't look sick but I bet they under go a tremendous amount of suffering and pain. I have heard that from my employer but my face says it all as well as my pockets from doctors visits and re-filling Rx. I would advise your husband to research and look up symptons/side effects and educate him self on Lupus. Hopefully everything will follow through and this won't be a stress or topic for you home anymore.
Well enough of all that from me...WELCOME again and I send you love, health and remission!

07-29-2009, 03:19 PM
Just wanted to say hello. You have already received a warm welcome and loads of good advice from the loving people here at the forum. Be patient with your hubby. If he loves you, and I am sure he does, he will educate himself in time. Encourage him to come here to the forum. There is a section for family and friends of lupus patients. Maybe he can make some connections there.

In the meantime, welcome. I hope tomorrow finds you well.


07-29-2009, 07:00 PM
Hi Thanks Leann =) yes everyone is so nice here. I am really glad I found the site.

Hi Birder, yes my husband knows about the disease; I have sent him websites articles he went to his first appointment recently and my doctor broke it down for him...however, it hasn't registered. I have been patient thou we have been together 8 years...and I know people handle news differently but it is just very frustrating.

Hi Ang I have Babesia too! Yeah we have a lot in common. Right now im on Vancocin and Deseret biologicals....I also do herbal IVs for strep. That is one of my biggest problem since it started showing scaring of one my ateries or somewhere in my heart. I have very high number count.

Hi Pearl and Dsunshine thanks for the warm welcome I send u guys love, health and remission as well!! ( I like that saying) :cute:


07-29-2009, 08:57 PM
Did your lawyer appeal? Usually it takes the appeal to win...

Do check out the disability forum..oodles of info on filing and evaluations for SS....


07-29-2009, 09:51 PM
Hi Oluwa,

I have a lawyer ready for my social security claim, however I don't have one for my long term disability. I found a guy but he is taking forever to get back to me and he is $500 an hour which I think is expensive.

I will check out the forums thanks for the info :yes:

07-30-2009, 09:20 AM
I sympathize with you. It is very difficult to live with a person who is not very supportive. People in your life really don't understand this disease. I have a father who has lupus and even he doesn't understand what I go through on a daily basis because the illness is unique to each and every one of us. I know the stress, in my case, doesn't help my blood pressure or my lupus. You feel like you are caught in a Catch 22 situation, you are damned if you do and damned if you don't. I am referring to your working situation. You certainly don't want to jeopardize your claim to receive benefits, but you have all this pressure put on you to work because of economic conditions. I sincerely hope things work out for you. I am sorry I can't offer any advice, but I can sympathize with your situation.

07-30-2009, 07:57 PM
Thanks Drinkofwtr it's just good to hear u are not alone thanks for sharing :cute: