Re: To Jeanne from S.

[Guest guest]

Hi Jeannie, I am 43 and have been having trouble with my cycles too. I have been missing them and then having them two to three weeks apart , having them very heavy, etc. I told my gyno because I suspected perimenopause and she told me I was too young, HA! I don't believe her. I also have hot flashes once in awhile. It's been going on for about a year or so now. So I guess I'm in the same boat with you. Also, I love to read. I will look for that book in my library that you recommend. When I am feeling well enough, I am a volunteer at my local library just to keep myself occupied and get out of the house. I have to or I will go crazy sitting in the house all day. I sit and log in new books that come in. It's a good job because I get to see the new books come in and get to "grab" them and take them out! I have major depression

and have had it since I became sick with sarcoid three years ago. I lost my job and everything that went along with my so called "normal" life, if you know what I mean. It really threw me for a loop.I couldn't get used to being sick all the time. Especially bedridden when they didn't know what was wrong with me at first. So getting out to the library has really helped me cope with being sick. It's also a good thing to volunteer because if you don't feel good you don't feel obligated to go in. Anyway, welcome to the group . You will find a lot of friends and support here. Hugs, Debbie Jeanne Betters wrote: Aw, ! That's awful! I feel so bad that it's been so tough on you...

I know how hard it is to pick yourself up when you're sinking... I grew up near the ocean... Try holding in a deep breath, leaning back and letting it all carry you along instead of drag you down. It may not always work, but sometimes, even for a moment, you feel stronger and safer when you just float with the current... I don't know. I don't mean to sound hokey. It just works sometimes. But yes, you can count on me to pray for you always! If it makes you feel any better, you're not alone in the special "period" of our lives! I started with really weird cycle changes about three years ago at 37... It's the pits. My husband and I were told we would never be able to have kids, so we became foster parents...we almost had 40 in just a couple of years... And some of our kids are our closest family now... < Our

first foster son, Adam, now 28, and my first foster daughter, Penny, now 26 are expecting they're first baby together in October. And we're already Penny's first son's godparents (Ethan). And we're even considered family by their natural parents, which is an even greater blessing!> Miraculously God led us to a Dr. who could help and our son Sam was born, now 9, going on 32 when he wants to watch an army flick but going on 2 when we tell him he can't have any ice cream before dinner! LOL!!! But, much to my heartache, after that we have never had another miracle - at least, not yet, because God's never told me "no," but He has made me wait, so I'm still hoping! LOL! Yes, I'm nuts. Anyway, I am so grateful to have Sam, but I really do ask God every night if He will give us another child so Sam has a brother or

sister. I talk with God about it on a regular basis. I'd even venture to guess when we get to Heaven, God just may have a cauliflower ear just because of me! Can you imagine!? What do you think He'll have to say to me about that!? LOL!! Anyhow - Sam asks for a brother or sister all the time. He's such a personable kid, and he has lots of friends, but sometimes I can see it in his eyes that he longs for a sibling, and it absolutely breaks my heart. Charlie, my husband, isn't into doing the foster care thing again (and probably rightly so) nor to do the adoption thing nor even try "alternative" methods. Charlie grew up in a huge family and got very much lost in the shuffle, and they had a lot of financial difficulty, so they had to do without a

lot. It didn't kill them, but Charlie did miss out on some really important things because he had to work early rather than go play sports after school or go on to college full-time. Let me tell you something really, really cool - I think you'll enjoy this: Sam and Charlie are best friends... They play sports together, they bike, they even have partial season's Pirates tickets courtesy of my basket business! I remember when Sam was just about two years old... We had friends visiting from Rhode Island and Charlie was out in the back yard cutting grass and sneezing and wheezing with his allergies the whole time. Suddenly the back door flew open. Me, my friend and her Mom stopped dead in our tracks from preparing the dinner meal. Charlie came in pounding his feet tracking mud and grass all over the kitchen floor. He put one arm around me and pulled

me to his sweaty, grass-covered body and planted a long wet one on me. I was all icked out and asked what he was doing that for? You know what he said? He said, "To thank you." And I asked, "What for?" And he said, "For childrens toys in the yard... I never thought we'd ever have them." I about cried. And just as stormily-quick as he breezed in, he breezed out and left me standing there stunned. Tell me something, have you ever heard anything so damned romantic in all your life? That man...Those words... No matter whatever we go through in life, I have his heart in mine, and nothing NOTHING will ever break that bond, I tell you. I knew right then and there that I've got the good stuff... maybe I don't get flowers and furs and fabulous cars and the perfect home, but I've got the good stuff, and nobody can take that away. Not even the neurosarcoidosis. Never... Ever. I know... I got off the subject. But I like a good story, and that's one that needed telling! Anyhow, when everything started changing in my "womanly way" 3 years ago, my heart's hope to have another child - fostered, adopted OR by birth - really started to cool to the realization that it really might never happen. I want so much more. < I heard an elderly lady speaking on tv the other night and she said that she always tells her kids that maybe she can't leave them much, but she did give them each other.... It absolutely pierced my heart! Poor Sam! > Two months ago I bled for 3 weeks straight. This month, I'm already two weeks late and I can't help but have a little glimmer of hope that just maybe... but I know that just because I've said anything, and because the "probability" is

very slim, that tomorrow I'll surely be visited by my old familiar friend. It's ok. In the flash of a sad thought, though, I thought about how Sam has Penny and Adam and Ethan and this little baby on the way. And with me and Charlie and our dog, Pawlee, I'd have to say Sam has one terrific family! And then I remembered how last summer Penny and Adam picked Sam up and took him to the drive in with them for the first time... And how they picked us up one summer day and took us to the zoo - and even packed a picnic lunch fit for a king! And I remembered all those great memories of Adam and Charlie working on the cars together, or Penny and I taking the kids to the playground and shopping for Christmas presents for them. And then the memories of Sam and Penny and Adam and Ethan laughing and talking and playing in the pool and how Adam brought a paper

airplane kit and fireworks just for the kids on the 4th of July... and I realized that you know, God already HAS answered my prayer. Sam has his brothers and sister. He won't be alone! He will always have them! I just keep focusing on how I expect it vs. how He decided to bestow the blessing... I was very humbled and very grateful. And I can't feel bad about anything anymore. I really do have it all. We all do! I always say God likes to bring his children together... It's so true! How awesome! Getting back to us and our "situations" - It's SUCH a rollercoaster time in our lives, isn't it? And for me, peri- or, as my doctor insists I call it - menopause is sucky. (My Mom insists she coined that word, "sucky," but don't let on - I've heard it from others waaay before I ever heard it from her - let her live in

joy!) That PLUS the neurosarcoidosis has really started to make me feel old. I actually blame both for my gray hair! LOL!!! (Have you had the honor of meeting Miss Clairol? She and I are such close friends! She's wonderful!) But none of this is any fun. It's just wrong and I feel robbed by this, too. I really do. And it does bring you down to think that the special times from "youth" have really and truly passed... Oh well... We have to look on the bright side - we're breathing, we wake up every day and the sun still does shine, we don't have to do chemo and deal with those horrible side effects, we're not nailed into a coffin, we have families and scrapbooks to make us fall in love with them again when they're driving us nuts... And most important we have the gift of hope! Desire for something is one

thing, but we must be eternal optimists because our deepest desires really do indicate that somewhere deep down we hope that we rally will get better someday! I really consider hope to be one of the greatest gifts God has given us. Some days, , all that we have is that glimmer of hope that we'll feel good again. Other days, it's so far away that it takes the loving words of a friend who really knows to help us through. It's ok to get tired and it's ok to feel sorry for ourselves... even dogs lick their wounds, for Pete's sake. But never, ever, ever feel bad for having that hope... Hope is faith in things that are not realized, but in their possibility... We do have hope for a reason... And it helps us cope and get through another rotten day. It's like the gold ring on the carousel... it's there, we see it, we want it, but

sometimes the ride goes so quickly that we just can't reach far enough to take hold of it... Disappointment can really take over our minds and bodys and try to quench our souls. Don't let that happen, . God loves you and He has a purpose for you. Your job is to take what you've been dealt and do something good with it. I know - I know with all my heart that I don't see what possible good can come from this horrible disease and getting older... I don't understand why I have to suffer... why anyone of us does... or ANYONE, for that matter. God never gives us more than we can bear - but rather gives us a way out so that we can get out from under it. Our minds are very, very strong gifts. If we let the bad, the sad and the ugly take over out thoughts, depression sets in and the next thing you know, you're completely helpless to do anything. I really have drawn a lot of

inspiration from the breast cancer patients and survivors I have had the privilege to meet and know over the past few years through the foundation. Everyone's pain and suffering is unique, but the will to live and get better is stronger than anything I know. Depression really kills. We've got to stick together and lick depression, at least, until the cure for NS arrives! Just remember to celebrate the little things, no matter how little they are. Sometimes something as simple as a good hot cup of tea and a slice of peanut butter toast does a world of good. In an instant it has the ability to take us back to a warm, safe memory from childhood, and although brief, it's better than gold or medication. I don't mean to sound simplistic, but we have to strive to find something warm and good and special and comforting to help us through. Since my

Grandma's having tea and toast with God nowadays, I'm inclined to have one by myself and remember the warmth of her love caring all over me. It helps... And I believe just the opposite of what you are saying... I think you are VERY grateful for the things you do have; it's just that our desire to want "more" or "better" can sometimes REALLY cloud the joy we do have. It's hard to see the sunshine behind the clouds during a hurricane, you know? You're allowed. Just please don't let it pull you so far down that your hope is quenched. You have too many good things to live for and celebrate... your family, you friends, your photos, your special God-given gifts and talents... And those are just a few. Hold steadfast to faith in God and to the hope that someday some genious will figure it all out and we'll be cured with just one shot or

just one pill. I have complete faith it won't always be like this. And even if it is, at least we've got each other - people who actually know what we're talking about -to lean into and to share the load and to hold each other up. Whenever I feel low < and believe me, I can put up a good front, so don't feel you're worse in the mind and heart area - I feel your pain - literally! >, and something hits me to make me realize it, I honestly do start counting my blessings. It helps a lot. Even if they're 42 and 9 years old and testosterone poisoned (just kidding) and drive me absolutely bonkers... That's what life is really about - living, experiencing and somehow coping and finding a sense of peace with it all. When all else fails, there's always chocolate! And when that fails us, we've got Clooney! LOL! I LOVED THAT EMAIL! Have you ever read, "The Elegant Gathering of White Snows" by Kris Radish? It's a wonderful book. I just finished reading it. It's basically a "chick book" about a group of women friends who decide one day they're going to walk out on everything and deal with their issues together instead of avoiding them any more. I loved it. I would gladly send you my copy if you'd like to read it! It's something to do while you're floating, at least - Try not to avoid the doctors, - I did that too, but it only made me worse. BIG MISTAKE! It's a pain all over, but I go anyway. Next time, I'll have all of this group's resources to

bring to my doctor... maybe I should ask the secretary to clear his schedule so he'll have time to listen to me??? LOL! Man, my arms are killing me - I'm going to try to sleep. I'll watch to hear from you - when you are up to it, though, ok? Take care of yourself. I've got you covered in prayer, too! Love,Jeannie Solberg wrote: Dear Jeanne, It's always nice to know someone is thinkin of me. lol I was

supposed to have a pap smear and exam done this Thursday but the doc was called out to deliver a baby so I've had to reschedule it. I'm 49 and haven't had my period for over a year so I think I'm through menopause so I was going to check on that too. I haven't had a pap for nearly four years. I just hate doctor visits now. ...such a drudge and ordeal. I feel like I've had my lot in life...to live in doc offices and I'm done with it in my mind but in reality I still drag myself out.... once in awhile. It's just not how I thought to spend my days hey?... I've been in such a fog lately that I can hardly think straight anymore. Each day is like dragging myself through mud. I feel too tired to even cry about it any more. ...sorry to be so downbeat but I haven't the energy to pretend either. Is it so wrong to want more even though I should be grateful for what I do have?....some are going through so

much worse. Thanks for the prayers.....I really really need them. I've appreciated reading your posts and don't ever think you write too long of a post cuz I've enjoyed all you've said so far...especially the stuff about the doctors. ...well off to a lay down again.... and here's to hoping I made sense. hugs S. Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database