Posted by Christina (216.192.92.52) on August 09, 1999 at 10:19:16:
In Reply to: Death Warmed Over posted by Carl D on August 09, 1999 at 08:51:42:
Hi Carl,
I'm very new here and I've only posted a few messages and I don't come to the site too often like others, maybe once a week or every two. I can't sit and read from the screen, too hard on my eye muscles and can set a migraine or cluster off.
I have read a few of your messages from the recent past and I feel so terrible for what that horrible person hidden behind Incog Nito wrote to you. Don't listen to him. I don't know his/her situation, but I have to wonder if he truly has clusters. If he did then I would think he would be more empathetic to your feelings and even if he doesn't get depressed by them once in a while then he shouldn't judge others if they do.
I have to admit you are scaring me a little listening to just how depressed and negative you are right now. It sounds like your stuck there, in that darkness, in that low. I've been there, just a few weeks ago. I have to say I am very lucky that I have a lot of support from my family, my husband and my friends. What was killing me a few weeks ago, was the fear that the cluster wasn't going end and I was having such a hard time dealing with the looks on my mom and dad's, and husband's face. They looked so tired, so worn out from the helpless feelings. In addition, I felt like such a burden. They never made me feel that way, but I could see what the headaches were doing to them and what they were doing to me. Before this period, I hardly ever, and I mean ever, took pain meds. I have an extremely high tolerance for pain, and whenever I could get through one (a migraine or cluster) without anything I would. Really the only time I ever used my Stadol (and it only took the edge off by 2 points on the kip too.) it was during a public event like a wedding or something. In fact that's the only thing that got me through my wedding recently. I had 4 that day. But before this cluster cycle, I have never had this many per day, 5 to 12 every day without a break. I never thought it was going to end. I didn't realize how easy I had had it these past 2 years. Only one a day sometimes even skipping, for a couple of weeks, sometimes a couple of months, but at 1 a day it really wasn't bad, even though at the time I thought it was. But this time, it lasted five weeks and like I said I was having 5-12/day plus some other complication (read CH all over head on 7/24/99). I was so very depressed. I've never been that depressed before. I can actually say that it was the lowest point of my life physically and mentally. One night I locked the bedroom door while my husband was in the study and my mom was going to sleep. I stared at a bottle of Soma, Ativan, and Phenergan. I knew if I took all three everything would be over quickly and noone would know. They would think I'm sleeping and wouldn't disturb me. But after a few minutes, I shook myself out of it and asked myself, what the hell are you doing? Nothing is worth this, a cluster cycle is not worth a life!!!! And you do have a life. If you could go to church, even if it's once then life is worth living. I'm not trying to be religious. My point is if you can go anywhere once it's worth living. And this cycle will end. I know, I know, just to hit again another time. But what you do with that time in between can be amazing. Just living is amazing, what a gift. If you don't have any family, or friends or are low on funds, there are still other things in life that you can appreciate that are free and can be appreciated alone. Like listening to a song an old song that has a good memory tied to it, or a beautiful sunset which is so incredible that it exists that we exist. Make the most out of your up time and don't make the most out of you down time, or should I say let it make the most out of you. Life is precious, embrace it!!!
I hope this helps. Now that my cycle is pretty much over still some break throughs here and there, it feels like a lifetime ago and I'm so glad I didn't give in.
In regards to SSI, I didn't see your post, I couldn't find it. I did find the one about he cliques, I can see what you mean about some get responses and others don't. I don't think it's intentional. These people, these fellow clusterer who are the only people who can truly understand what you and i go through, seem like really nice caring people. Again I don't think it's intentional. I notice you did get a lot of apologies so that should show for something and maybe there are a lot of people like me who don't come out too often. This board is extremely active. One day's worth of message gets lost with a day, so if you don't come out everyday, you can definitely miss quite bit. And like I said I can't stay out here too long. So I can't search through too may old messages, so I apologize for not responding sooner, but I am on SSI. I have three type of headaches though. So I can't say that I am CH sufferer on SSI. The difference may be that I have daily migraines and they haven't let up at all for 3 1/2 years and after the first 6 months and after being on temporary disability (have you ever gone this route? I'm not sure if you can if you're not working) then I went back to work. After 1 year and 1 month, I went on temp disability again but through my company not the state. After 3 months, I made another attempt to work. Didn't last. Then I took a family leave for the max of 12 weeks. I didn't get paid but my benefits were still in tact. Then when that came to an end I tried a third time unsuccessfully to return, and then I finally had to resign. It's unbelievable that my boss allowed this to go on as long as it did, but he had clusters too! So I applied for SSI. When I went to my intial interview, it turned out that they determined that my disability began the previous year when I returned for work the first time. They saw it as an unsuccessful attempt to return to work which is really important. and the first 6 months of your term, you do not get paid. Not even retro, it's like it doesn't exist. Which is messed up. But I did get a retro check from the time I was approved back to the time it was determined + 6 months. In other words, my disability term began in Aug. 97, + 6 months is Feb. 98 and I got approved in Sept of 98. So I got a check retro from Feb to Sept. It took less than 3 months to get approved the first time around, which apparently is rare. They say that 80% of all claims (regardless of illness) are denied and then 50% of the first appeals are approved and then I think 30% of the second appeals are approved. This process can be very lenghthy. First you lose 6 months, then 3 waiting for approval then another 3 or more for an appeal and another 3 or more for the second appeal. So you have to make sure you do it right the first time. My rep said that my application was the most completed app he had ever seen and that I know more about my illness than most. I also had copies of all of my files from all the doctors I 've ever seen. So make sure to be as thourough as possible. You should call the National headache foundation. I think it was last year, if not the year before they did a 2 part series on how to apply for SSI. It was pretty good information. I'm sure that if you call them they can send you a back copy of fax you or something. You may have to become a member I'm not sure. I used to get mine from the Diamond Clinic's office. I would send you mine but I can't find it. I think I recycled it by accident.
I hope this helps too.
By the way, I'm not sure what your situation is, if you are allergic, if you rent your home, if it would be a financial strain, but if you can, think about adopted a dog or a cat, if you like animals. My husband and I adopted our dog 3 years ago. He was my birthday present and literally adopted to keep me company. He has helped me so much though these past few years. When I'm sick he knows it and he cuddles up to me and he's just so sweet and lovable. They say animals help, they have programs where they bring them into hospitals to visit with terminally ill patients and it's been proven in studies that it does help.
Take care of yourselves, and if you can't find anything to smile about off the top of your head, search a little I promise you'll find something and it maybe the simplest little thing.
Christina