how do you survive?

[k9angel26]

I'm at a total loss. The state I live in has nothing helpful. I was diagnosed with narcolepsy in 2000 after finishing treatment for Grave's disease. I am 26, been married almost ten years and have a 9 yr. old and toddler. I have family who feels it better to pretend I'm a nut than help me, doctors who don't have a clue, a husband who tries to understand and can't, what now? I am now running the risk of losing my marriage due to the fact that I not only can I not work or stay awake long enough to get SSI, but the majority of income is being spent on ins and meds. Can someone help point me in the right direction before I lose my marbles? Is severe depression common? Has anyone else been at the point of enough? Any ideas of a good on-line support group as driving is not an option. I don't usually act this awfully, I'm usually able to keep a happy face, but because of me and my disability my kids are not going to have Christmas and it's just too much to bear.

[k9angel26]

Hello my dear, glad to see another newbie!!
I am sorry that things have gone the way they did but I am glad you found this board.
I don't know what I would have done without this board. It has helped me so much to also know that all of these other weird things I'm going through are related. I was so afraid that I'd find out I had some other weird problem.
I am still supposed to go in to have a cat scan because I have had swollen lymphnodes all over my body for almost a year now.
The way I see it, it's either related to the N or thyroid, and if not, maybe it's God's way of taking me back home.
Please keep posting or you can e-mail me at chatterboxx77@yahoo.com

[elswick66]

kdangle,
Again I have to say I am sooooo happy to have found this site. Girl I am right here with ya! I had 95% of my thyroid removed when I was 17. Did not need meds for years because my levels were fine. The only test that came back abnormal were the thyroid autoantibody tests. Way abnormal. I only used 1mg just to protect the thyroid I had left while trying to get pregnant. I had 3 children from my first marriage, but after the autoanitibody problems, I had 5 miscarriages with hubby number 2. Then a little over a year ago, I went hyper again and had the radioactive iodine therapy. (was diagnosed with graves also) I never thought I would be hyper again with only 5% of a thyroid left. What stinks is I went from 114lbs at 5ft 7 (which I didn't mean too) to 164 lbs! Lets not forget the mood swings and the extra fatigue while I was taken off all meds other than synthroid. Not even dexedrine. Withdrawals and menopause like symptoms. I thought I was going to self combust, really! It took months to level out, and my husband was the same as yours. Only he just knew I should be better in just a couple of weeks. IF ONLY IT COULD HAVE HAPPEND THAT FAST! My daughter, her husband and newborn had to move in after they lost their apartment. The husband would not find a job, and they did not help around the house. So you can imagine the stress that happened here for a few months. So between me not getting better sooner, by me not kicking out my daughter and her family before they had a place, by me not knowing how to make all involved happy and hold onto my job at the same time, and by me not making my husband number 1 in the house, I lost him. And this was not our first marriage together. So you can imagine what I am going through. Not only the disappoinment of the divorce, but the fact I did still lose my job, and I also have no insurance. I had gone 2 months without my synthroid because I had to cancel my appt to get my levels checked. My dr did call me in a new prescription at the same level I was on, because some thyroid has to be better than no thyroid. But I do need to get into to have the levels checked. I feel better now that I have the meds back into my system.

I am sorry your husband is not so understanding. Have you tried to find information on the internet to show him what all this little gland is responsible for, and what your body can go through when you have too much or too little. When I went from hyper to hypo, I experienced many symptoms. Like the ones I mentioned earlier, plus I had arthritis, and let's not forget that I could have made a few wiggs out of all the hair I have lost over the last year and a half. My folicle have still not got their strength back, hair is still falling out. I shed worse than a persion cat! I can go for days without eating but a few calories and will not lose 1 ounce. The only thing I can hope for is to firm up and build more muscle. Then the muscle will burn some of the fat.

Tell your husband it's not all in your head, and tell him for me that I promise, it will get better. I am still in the same house with my ex, since I have no job and all until I get back on my feet. He had the nerve to tell me the other day, that if I did all that I do now while we were still married, we would still be married. Isn't that a b%@*h!!!!! He still doesn't get it. I would have if I could. I sure as heck did not get remarried to him, just to come back and see how long I could get by with neglecting him. Does that make sense to you? I love him to death and didn't want the divorce, so living here with him is like living in Hell on Earth. He still cares for me and doesn't want to see me homeless, but his love for me has died because I was sick. Whatever happened to in sickness and in health? The courts and churches need to change the vows to not say "in sickness and in health, through all the days of our livs", but "in sickness and in health, from this moment on, or until the day I stop loving you, or when you make me mad, or when you stop living for me, or when I just want someone else, or if I just decide I don't love you anymore". It's crazy, like these vows are only based on the feeling we feel for that one day. Not many people can offer unconditional love these days. There were many days I did not like my ex's behaviors, but I did still love him. Divorce in the USA comes way too easy. And they wonder why the divorce rate is so high.

I hope you get feeling better and you marriage works out. Nobody should have to go through what I have. You are in my prayers!

[<Denise>]

You can find good disability info at immunesupport.com. Click on "disability". Also the above mentioned site offers a lot of support for those dealing with fatigue and unable to work. Also try Mary Shoman's thyroid sites: aboutthyroid.com and thyoird-info.com. she offers loads of info on thyroid problems including having your thyroid removed and info on associated conditions. Good luck!

[Justme]

talkaboutsleep has lots of info on disability here at the boards and also in articles. Here is a good place to start. http://talkaboutsleep.com/sleepbasics/disability_printable.htm