Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Hey there Bingo me too. I sleep weird patterns too. I am usually up at night lately again. There was a brief time span i had some normal hours but i'm back to my "normal" of being up at weird times cause i hurt and i'm on strong pain pills. So i'm doing the same thing. If you ever wanna talk i have yahoo and msn messenger. love ya,Dear friends, no matter how we find them,are as essential to our lives as breathingin and breathing out........ God Bless you allJan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.521 / Virus Database: 319 - Release Date: 9/24/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 If i'm lucky doing what i'm doing sending e-mail to my friends like you, and i have a friend in england that i chat with sometimes. I live alone it's just me and my kitties here my kids are married and doing their own thing. And the chances of me catching a man like this is like me meeting the president of the united states. I love music i always have the radio on or some cd's but they are all christian and thats what i like. How about you? You are God's created beauty and thefocus of his affection, and of his delight.May God Bless each of you........ Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.521 / Virus Database: 319 - Release Date: 9/24/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 , You are so right. And I have given up on looking for a husband like you said if God wants me to have another one he will work it out. He has done so many beautiful things in my life. YesI get overwhelmed and depressed actually on a daily basis but I just talk To the good Lord . I know he said in the bible that he'd be with me always, so I know i'm not alone. Now I have a great friend like you to talk to like so many others here who are sick. I'm sorry you are sick. I wish I could do something to make you feel better. I decided to have the surgery on my neck. So you like to paint? I wish I could. I don't know the first thing about it and my hands aren't steady enough. Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.521 / Virus Database: 319 - Release Date: 9/23/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 You are very welcome anytime you wanna talk let me know. **HUGS** Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.521 / Virus Database: 319 - Release Date: 9/23/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 , The best thing to do is bring this up with your neurologist or pulmonologist. They can order a sleep study to see if you have sleep apnea. This is a painless test where they wire you up with sensors that tell eye movement, leg movement and also monitor your breathing thru the night. I have pretty severe sleep apnea with restless leg syndrome. So between not being able to breathe at night, and then my legs jumping in spasm 200-300x a night, I can easily miss 6 plus hours of sleep. I use a Cpap machine, with O2 added and am on Sinemet, so it does help. I know that I still have some nights where the pain wakes me up, and I just go out to the living room and read for 30 mins or so, then back to bed, and sleep. Get ahold of your MD and get a sleep study scheduled. It is worth it. Compassionately, TRacie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Amen sister. I have had two disasterous marriages and a couple relationships. Of course nothing would please me more than to be seeing or at least talking to a guy with some potential, but I will not compromise my values nor will i be miserable just to make a man happy while i go miserable. Not ever again. I am too much of a giving affectionate person wee he needs to be too. So i say God will send one my way. Love ya and how ya doing? You are God's created beauty and thefocus of his affection, and of his delight.May God Bless each of you........ Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.521 / Virus Database: 319 - Release Date: 9/23/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2003 Report Share Posted October 4, 2003 , even though we all have our share of heartaches and troubles, your letter touched me deeply. So many things to cope with. I live with my 80 yo mother and 14 yo granddaughter. I'm in a house that I bought back when I assumed I'd be working as a nurse-midwife until I was 70. Now I'm on a short-term medical leave & worried about the future. I don't have enough equity in the house to sell it, mostly due to financial negligence on my part, but also some family members ripping me off. If I end up having to work part-time or go on disability, I'll have to file bankruptcy to get out of the house. I'm not so upset about it, because I think maybe renting would be better. Then when something goes wrong, I don't have to fix it. Also, I have a great mechanic who will keep my car running & can get me a reliable used car if I need one in the future. I have no sleep pattern. I've always been a night owl; now I just sleep whenever. Some times I sleep all night & all day; other times I can't sleep at all. Luckily, other than taking my granddaughter somewhere or going to appts myself, there are no demands on my time. As far as the computer, I bought a folding canvas camp recliner that works well for me. I put the keyboard on a pillow on my lap & pull the monitor to the edge of the desk. Re: your boyfriend's failure to understand/accept the physical, mental & emotional effects of this disease, have you heard about the booklet, " But You Look Good? " Many of us have found it helpful for our friends & family. This is a crappy disease; sometimes I would rather have cancer or something that people understand. Please know that you have people here who understand and grieve with you for all that you have lost. Hugs from Indiana, Rose odd sleep patterns > Hi all, > > I have had the exact same sleep pattern as . Need a roommate ? ha, > ha...Seriously tho, I have had the sleep problem since the week I became ill > in Jan '92. Until June of this year, I couldn't lie flat long enough to > sleep, so for the previous 5 years I've slept in a chair or in an odd > position on the couch. I got away with that lifestyle as I have lived alone > since '96. This past May I moved in with my boyfriend (silly word for those > in their 40's) and he goes to bed at 10pm almost on the dot, and wakes at > 5:30am daily. When I moved in I was scared to death that my sleep problem > would ruin our relationship. So I spent some recently inherited money (I > survive on SSI) on a temper-pedic bed, complete with the motorized > foundations and massage. (This was immense sacrifice for me, as if things > with him don't work, I have nowhere to go, and can't afford my own place > anymore). After a month I got used to the new bed and even began sleep at > night, even if only for a few hours at a time, and when awake at night, I > stayed in bed being quiet until I would doze off again. I could only > maintain going to bed at the same time as he, and rising slightly later than > he, for just a few months. But I got sicker in August and his father died > at almost the same time. My bf is now sleeping in our guest rom every night, > as he can't sleep with me not sleeping at the same time, in the same bed. I > feel like roomies, not lovers, not like a couple, and it hurts so much > inside. I can't handle the emotional pain when my physical pain is soaring. > > This started out being a journal entry for me, but I keep thinking about > Sharra's posting recently plus various comments from others on here, and all > those thoughts have led me to deciding to post the following thoughts as I > know I cannot possibly be the only one in my current situation. > > My mother who passed away a year ago paid my rent and helped me out. She is > gone now, and my father died in '94. Mom remarried in '96 and after her > death, my stepfather moved 1500 miles away to live nearer his biological > kida and grandkids. My stepdad is a bit of a wierdo and has made passes at > me, so living with him is no option either. I have only one brother who > lives almost an hour from me. He has 2 small children and a wife, and going > there is not an option as they haven't even enough room for themselves, and > they are having massive marital troubles, so it would be awful for me and > for them > > I am scared to death inside and feel so cold and so alone. I don't know > what to do. I've been out of work since Jan'95 and every time I've tried to > go back to work (I was a social worker) some other medical crisis hits. I > got hit with the Sarc monster in '92. Then Fibromyalgia in '93. Then I > spent 4 years on MS Contin and went in-patient to detox. I've been on > methadone (this is 2nd course) for 10 months and am weaning down on my own > very slowly. My boyfriend has recently told me that he thinks I am a drug > addict (cause of being on morphine and methadone etc) and he doesn't grasp > how awful living with this pain is for me. Last year I was diagnosed with > RSD, and 6 months later, 2 herniated discs. I just learned that one > vertebrae has slid forward and cracked in half, and another has moved > sideways. My bf seems to think I am a failure for not being able to " work > through the pain " to " achieve the things I am really capable of.... " > > The only people (that my path has crossed) who have totally understood all > this medical stuff etc were my parents. I have no children as prednisone > and possible granulomas on my pit. gland caused early menopause at age 35. I > was divorced in 93, but my ex left in 92 as he couldn't cope with my > illness. We were married 10 years. I need desperately to have my r'ship with > my bf to work out because a) I love him so much, and yet I am so afraid > he won't be able to cope with my health problems in the long run and I will > have nowhere to go. The sleep thing, (to get back to my original point) is > messing up our daily life in the worst ways. It drives him nuts when I don't > spring out of bed by 7am. Sleeping past 11am never mind past noon is like > the crime of the century. I have tried everything I know to fix the sleep > thing and to control my pain. I have gambled with what little money I have > (eg., buying that bed, which btw my bf encouraged me to do). I've taken > every sleep med, been to 3 sleep labs, etc. over the years. I was told 10 > years ago, that my disease had destroyed my natural rthym, that my circadian > clock was broken and nothing I can do will " fix it " . I know about the > underground study and yes, the body wants to run on a 28 hour cycle. But > that doesn't help me, or let me function as well in the real world as the > world operates on a 24 hour clock. > > I guess I mostly needed to vent to you who all understand this. I have > never felt so all alone, so frightened that my insides feel cold, and I > don't know what to do. I have begun organizing the sale of some precious > treasures my mom left me, and I am filled with guilt to even think of > selling items that have been in the family for 3, 4, and even 5 generations. > And what do I do when that runs out? I have just turned 43. I feel like a > massive burden. I wish so much that I could have been normal and I get so > angry and depressed that all this has hit me cause it is not fair. It isn't > fair that anyone here got sick either, and I guess I am still grieving for > all that I have lost over the last 12 years. My grief over getting sick now > seems so bearable in hindsight, compared to when I had my mother's emotional > support. Now I am really against the wall and what I thought was horrible > before, is nothing compared to how I am today. I have had several panic > attacks over the past week. I have made calls to try and find a therapist > and I hope to get an appointment with somebody soon. > > Anyhow Sharra's journal posting hit home with me in a very big way. I could > have written the exact same thing about my mind. I get scared because I am > not as quick and sharp as I used to be and thus I fear I am losing my sharp > ability to take care of myself, and oh, good god, what will I do with no one > to help me? Thank you all for letting me vent and letting me feel that I at > least have someplace to say these things I can barely let my own mind > aknowledge, never mind saying all this out loud. I know I mostly lurk on > here as my hands hurt so much that typing is most often too hard. I also > have a serious leg ulcer right now and I need to elevate my leg 23 > hours/day, so sitting at the computer is a big no-no. You all give me > support each day as I know I'm not the only one with this nasty illness that > almost no one else has ever even heard of before. All of your words help me > as I see everyone's different struggles and different victories along the > way. Thank you so much for allowing me this long-winded rant; I greatly > needed it and it has helped to clear my head. > > May today be a good day; a day of clarity and peaceful rewards, > From in Boston > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 when i first got sick and started prednisone, it was just impossible for me to sleep at night. i was wired!!! i stayed up eating or watching tv or wanting someone to talk to me. during the day is when i wold be exhausted, and i would just crash wherever i felt comfortable for the time being carrots/nicole > >Reply-To: Neurosarcoidosis >To: <Neurosarcoidosis > >Subject: odd sleep patterns >Date: Fri, 3 Oct 2003 23:16:52 -0400 > >Hi all, > >I have had the exact same sleep pattern as . Need a roommate ? ha, >ha...Seriously tho, I have had the sleep problem since the week I became >ill >in Jan '92. Until June of this year, I couldn't lie flat long enough to >sleep, so for the previous 5 years I've slept in a chair or in an odd >position on the couch. I got away with that lifestyle as I have lived >alone >since '96. This past May I moved in with my boyfriend (silly word for those >in their 40's) and he goes to bed at 10pm almost on the dot, and wakes at >5:30am daily. When I moved in I was scared to death that my sleep problem >would ruin our relationship. So I spent some recently inherited money (I >survive on SSI) on a temper-pedic bed, complete with the motorized >foundations and massage. (This was immense sacrifice for me, as if things >with him don't work, I have nowhere to go, and can't afford my own place >anymore). After a month I got used to the new bed and even began sleep at >night, even if only for a few hours at a time, and when awake at night, I >stayed in bed being quiet until I would doze off again. I could only >maintain going to bed at the same time as he, and rising slightly later >than >he, for just a few months. But I got sicker in August and his father died >at almost the same time. My bf is now sleeping in our guest rom every >night, >as he can't sleep with me not sleeping at the same time, in the same bed. I >feel like roomies, not lovers, not like a couple, and it hurts so much >inside. I can't handle the emotional pain when my physical pain is >soaring. > > This started out being a journal entry for me, but I keep thinking about >Sharra's posting recently plus various comments from others on here, and >all >those thoughts have led me to deciding to post the following thoughts as I >know I cannot possibly be the only one in my current situation. > >My mother who passed away a year ago paid my rent and helped me out. She >is >gone now, and my father died in '94. Mom remarried in '96 and after her >death, my stepfather moved 1500 miles away to live nearer his biological >kida and grandkids. My stepdad is a bit of a wierdo and has made passes at >me, so living with him is no option either. I have only one brother who >lives almost an hour from me. He has 2 small children and a wife, and going >there is not an option as they haven't even enough room for themselves, and >they are having massive marital troubles, so it would be awful for me and >for them > >I am scared to death inside and feel so cold and so alone. I don't know >what to do. I've been out of work since Jan'95 and every time I've tried >to >go back to work (I was a social worker) some other medical crisis hits. I >got hit with the Sarc monster in '92. Then Fibromyalgia in '93. Then I >spent 4 years on MS Contin and went in-patient to detox. I've been on >methadone (this is 2nd course) for 10 months and am weaning down on my own >very slowly. My boyfriend has recently told me that he thinks I am a drug >addict (cause of being on morphine and methadone etc) and he doesn't grasp >how awful living with this pain is for me. Last year I was diagnosed with >RSD, and 6 months later, 2 herniated discs. I just learned that one >vertebrae has slid forward and cracked in half, and another has moved >sideways. My bf seems to think I am a failure for not being able to " work >through the pain " to " achieve the things I am really capable of.... " > >The only people (that my path has crossed) who have totally understood all >this medical stuff etc were my parents. I have no children as prednisone >and possible granulomas on my pit. gland caused early menopause at age 35. >I >was divorced in 93, but my ex left in 92 as he couldn't cope with my >illness. We were married 10 years. I need desperately to have my r'ship >with >my bf to work out because a) I love him so much, and yet I am so afraid >he won't be able to cope with my health problems in the long run and I will >have nowhere to go. The sleep thing, (to get back to my original point) is >messing up our daily life in the worst ways. It drives him nuts when I >don't >spring out of bed by 7am. Sleeping past 11am never mind past noon is like >the crime of the century. I have tried everything I know to fix the sleep >thing and to control my pain. I have gambled with what little money I have >(eg., buying that bed, which btw my bf encouraged me to do). I've taken >every sleep med, been to 3 sleep labs, etc. over the years. I was told 10 >years ago, that my disease had destroyed my natural rthym, that my >circadian >clock was broken and nothing I can do will " fix it " . I know about the >underground study and yes, the body wants to run on a 28 hour cycle. But >that doesn't help me, or let me function as well in the real world as the >world operates on a 24 hour clock. > > I guess I mostly needed to vent to you who all understand this. I have >never felt so all alone, so frightened that my insides feel cold, and I >don't know what to do. I have begun organizing the sale of some precious >treasures my mom left me, and I am filled with guilt to even think of >selling items that have been in the family for 3, 4, and even 5 >generations. >And what do I do when that runs out? I have just turned 43. I feel like a >massive burden. I wish so much that I could have been normal and I get so >angry and depressed that all this has hit me cause it is not fair. It >isn't >fair that anyone here got sick either, and I guess I am still grieving for >all that I have lost over the last 12 years. My grief over getting sick >now >seems so bearable in hindsight, compared to when I had my mother's >emotional >support. Now I am really against the wall and what I thought was horrible >before, is nothing compared to how I am today. I have had several panic >attacks over the past week. I have made calls to try and find a therapist >and I hope to get an appointment with somebody soon. > >Anyhow Sharra's journal posting hit home with me in a very big way. I could >have written the exact same thing about my mind. I get scared because I am >not as quick and sharp as I used to be and thus I fear I am losing my sharp >ability to take care of myself, and oh, good god, what will I do with no >one >to help me? Thank you all for letting me vent and letting me feel that I >at >least have someplace to say these things I can barely let my own mind >aknowledge, never mind saying all this out loud. I know I mostly lurk on >here as my hands hurt so much that typing is most often too hard. I also >have a serious leg ulcer right now and I need to elevate my leg 23 >hours/day, so sitting at the computer is a big no-no. You all give me >support each day as I know I'm not the only one with this nasty illness >that >almost no one else has ever even heard of before. All of your words help >me >as I see everyone's different struggles and different victories along the >way. Thank you so much for allowing me this long-winded rant; I greatly >needed it and it has helped to clear my head. > >May today be a good day; a day of clarity and peaceful rewards, >From in Boston > > _________________________________________________________________ Get MSN 8 Dial-up Internet Service FREE for one month. Limited time offer-- sign up now! http://join.msn.com/?page=dept/dialup Quote Link to comment Share on other sites More sharing options...
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