jenwclark

Yes, there is hope. Other people have recovered significantly after being sick for months or years. That doesn't mean it's not miserable being where you are. I'm sending good thoughts your way. Spike

Yes, a number of us are and more are in the process of applying. Try a search for SSDI or disability on the forum. I know there have been a couple of threads about that since I joined. Good luck. Spike

*hug* *hug* *hug* I'm so sorry this happened. And I'm sorry you have to deal with the finances as well as the emotional betrayal. I don't know what I can say to help, but at least know that we're thinking about you. *hug* Spike

How cool! I'm sure the interview will go fine, but good luck anyway. Spike

Happy Birthday! Here's hoping your body gives you the gift of a good day! spike

Actually, the ring was a gift from my cousin, who was studying aromatherapy at the time, so I don't know where to tell you to look. I usually use lavendar or lemon. I really like them, and they're supposed to help with energy (again according to my cousin). I don't bother to wash out the ring. There's probably a little of the old oil left over, but I don't notice it in the smell. There's a woman here in Columbus who sells soy candles in jars. She does sell unscented ones, and I think she only uses natural scents in the others. I walked past her booth the first time without noticing it, so they're relatively mild. I can't get within 20 feet of a Bath and Body Works without getting a headache. It looks like she sells online, too, at www.joyofsoyshop.com.

I'm also cautious about what I share. Some people seem to take every upswing as a sign that I'm "getting well", and others seem just as disappointed as I am when I go back down. For some reason, once I've told someone I'm doing better, I somehow feel like I've made a commitment to continue feeling better. I think I probably shut out more people than I should. I try to protect even the people I'm closest to from disappointment, and that ends up isolating me. My close friends and family are perfectly capable of taking care of themselves, and if they've been watching me go through this for 10 years, and they STILL get carried away with each bit of good news, that's not really my responsibility, now, is it. spike

Like the others said, reading, studying, or thinking has the same effect on me as light exercise. I am usually able to read, but it's hard work and not something I can do for relaxation. I have to take it in short stretches. When I was in school, I just couldn't seem to grasp that 15 minutes of homework done while seated with my feet up took a significant amount of energy. Spike

I picked up an unscented pillar candle at World Market last year. You might also try something like Gaiam (gaiam.com) or another company that specializes in natural products. You'll pay through the nose (as it were), but you may even find something made with soy instead of petroleum products. For a nice scent in the air, I have a little clay ring that sits on top of a light bulb. You put a few drops of water and essential oil in it, and the heat from the bulb diffuses the oil.

willows, Everybody needs a "good old moan" now and then, and you've certainly got good reason. I'm sorry to hear about Mark's changed attitude. I hope it's very temporary. I'm glad you can at least come vent here. *hug* Spike

Maxine, I'm glad you had such a good visit with the doctors. I'm sorry the prognosis isn't better, but I know it can be a relief just to have some understanding of what's going on with your body. Here's hoping this is the start of better times. Spike

Hi, Dayna. I'm sorry you were turned down, but as you say, it's not surprising. I was denied twice, but did eventually get SSDI. I got a lawyer for the last appeal, which was hugely helpful. When SSA sent me the second denial, they included a few phone numbers for organizations of lawyers that specialize in disability cases. The standard practice seems to be that you pay nothing if you lose, and if you win, the lawyer gets a fixed percentage of your back benefits. I got the lawyer when I was facing a hearing for the next appeal, and it sounds like you're not quite at that point yet. In my case, the lawyer either took care of the paperwork himself or helped me fill it out if he needed my input. I think I lucked out in terms of both lawyer and judge. At the time, I was working with a CFS diagnosis, but the court-appointed doctor wasn't willing to acknowledge that I had any problem other than depression. So after the hearing, my lawyer wrote up a statement explaining how my "depression" keeps me from working. I'm not thrilled to have a psychiatric diagnosis on the record, but at least I got the benefits. I would encourage you to go ahead and appeal if you're still not sure you can work. If or when you're approved, you get benefits back to when you started the application process, so there's an advantage to keeping it moving rather than starting over if you decide later that you need it, after all. If you do start working, all you have to do is tell them. Good luck. spike

I'm so sorry, Jacquie. It's so frustrating when you can't even get a break while you sleep. Given that you're feeling overheated, this may not be useful for you, but here it is. I have had a lot of trouble with waking up sweating in the night, and I have found that, counter-intuitively, wearing a light weight pair of sweatpants helps. I think it's partly having something to absorb the sweat between my legs and partly that at night I sweat when I'm cold. I sometimes wake up and I know I'm uncomfortable, but I can't tell whether I'm hot or cold. If worse comes to worst, I look at the thermometer to figure out whether I need more or less blankets. I hope something helps. It sounds like you're having a really rough time these days. spike

Becky, I'm so sorry about your experience with your friend. I can see why you would be rethinking the friendship. I would be, too. One thing to bear in mind -- if there are other things about this friend that make you want to keep her in your life, it may be worth talking to her about how her behavior affected you. One of my dearest friends sometimes gives me the 'mind over matter' attitude, and I was starting to feel like I just couldn't talk to her about my health. Since there isn't much else going on in my life right now, that would have been a problem. When I brought this up with her and told her it sometimes felt like she didn't believe I was sick, she actually burst into tears. She told me that she sometimes feels that disbelief kicking in because she doesn't WANT me to be sick. She really does believe in me, she just wishes my life wasn't so difficult. Now that I know that, I can work around it, and maybe remind her that pretending it's not real doesn't help. That said, I have lost some friends over the time I've been sick, and every one hurts. I hope you find some good new ones. Spike Em, That, I totally understand. Take care of yourself, and happy (very belated) new year. Spike

Emily, I've been enjoying this chat, too! Your comment about "being" instead of "doing" made me think of an interview I heard several months ago with a woman who grew up in the civil rights movement, going to meetings with her parents. She said she was raised that the most important thing was to BE someone real, and that being that person might lead you to DO something important, and doing something might let you HAVE something you want. She made the point that these days we've turned that around. People tend to think you have to HAVE something to be able to DO something, and you have to DO something to BE someone. I'd be happy to talk to you about Quakerism, mitzvahs, "being", and all this other stuff anytime. (At least, whenever my brain is sufficiently functional.) Feel free to PM me, if you like. Spike

I don't think I've had the quivering, but I do get pins and needles in my upper lip when I'm feeling especially potsy. It tends to go along with flashes of pins and needles on my upper arms and thighs, and with feeling like I'm blacking out repeatedly for just a fraction of a second. For me, it usually means I've been going too hard and it's time for a break. Spike

Yay! Congratulations on taking the plunge, and I'm glad your courage has been rewarded. Spike

Emily, I love the idea of the "rolling mitzvah"! No, I'm not Jewish; I'm a Quaker. I forget where I learned about mitzvahs, but I'm happy I could provide a reminder. It's awfully nice to know other people are thinking about this stuff. Spike

I think that graciously accepting help is a gift. In Judaism, isn't it a gift to give someone the opportunity to perform a mitzvah? Even if I'm asking for help from a stranger, like in a store or library or something, I find that people respond positively, even enthusiastically, when I come in with a smile. Your friends would probably enjoy helping you even if you couldn't offer them emotional support in return. (Notice I'm not saying "MY friends would enjoy helping ME". It's amazing how much easier it is to see how all this applies to someone else.) I think you're right, though, that between good friends things even out in the long run. There's no way to keep score, anyway, because we probably don't realize half of what we're giving and getting. I just always feel more secure if I think I'm erring on the side of giving too much instead of taking too much. That's been a difficult adjustment for me, too. Ok, I've run out of coherent thoughts now. Spike

I've wrestled with the friendship question a lot, both how to keep them and how to make them. I have sometimes felt that I didn't have much to offer. I can't give somebody a ride to the airport, or take soup to someone who's sick, or any of those nice little things friends do. And making small talk is a challenge. I've been in school part time for most of the last 10 years, so I've had that answer to, "what do you do?" -- I just don't mention that I'm only taking one class. Now that I'm completely out of school, it gets more awkward. Sometimes I luck out. At one party at my sister's house, I ended up having a long conversation with one person who had long-term health problems and another whose significant other had the same. One of the plusses is that when you meet someone who understands, you have an instant bond. With my close friends, I finally learned that I do have something unique to offer. My health problems have forced me to slow down and pay more attention to life. I have spent a lot of time inside my own head, and what I've learned about myself helps me understand other people, too. My friends know that I'm a good person to talk to when they're trying to sort something out. But I'm not sure friendship has to be an even trade. I think I get more hung up on that than they do. I've got friends who just take it for granted that they'll probably have to pick me up when we get together. I've got an Asian friend down the hall who enjoys the challenge of making gluten free food, and she'll just show up on my doorstep with a bowl of soup, or, if I'm really lucky, tiramisu with rice flour ladyfingers. Last December I was having a really rough time, and I called my sister to ask her to come help me get things under control. She lives 8 hours away, and she got in the car and drove out here the next day. None of these people have given me any reason to think they resent me; in fact, they admire and appreciate me. Am I lucky, or what?

I've had that kind of thing off and on for the last couple of years. They even tested me for narcolepsy because I would jerk awake from a vivid dream minutes after falling asleep. (The test was negative.) Sometimes it feels like I forget that I'm trying to sleep, so I wake myself up every time I start to drop off. I haven't found a magic bullet for this. These days, I'm taking 100 mg of Zoloft for my blood pressure, but I find it also helps with anxiety, so anytime I'm feeling stressed or I have trouble sleeping for a few nights I bump it up to 150mg (with my doctor's blessing). I find that I usually only need the higher dose for a few days, because it somehow breaks the cycle. I don't know whether this is a physical or emotional effect. When that doesn't work, I just ride it out and try not to make things worse by stressing about the fact that I'm not getting enough sleep. Hope something helps. Spike

As if everyday life wasn't hard enough with POTS! I don't have any helpful experience to share, but I wanted to offer sympathy and moral support. I hope all the work goes smoothly. Spike

Then there's the dreaded, "You don't LOOK disabled." Thanks for sharing. Spike

Hi Dean, and welcome. Bending over and standing up is awful for me. Doing laundry knocks me out for an hour or more because I have to bend over to get things in and out of the washer and dryer. I used to leave myself notes on the floor, but now I leave them on a table so I don't have to bend over and pick them up later. I don't actually pass out, but I get dizzy and my vision grays out, and I get headache and nausea that stay even if I lie down. I'm glad you're feeling less alone. That's one thing we can all do for each other. Spike

I'm so sorry. December seems awfully far away when you're feeling worse and worse. (I have an appointment with Dr. Grubb in January, and it seems like forever.) Does your neuro have a cancellation list? If you're flexible enough to go on short notice, it might be worth trying. Hang in there. Spike