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 Posted: Wed Nov 04, 2009 12:29 pm
AliciaLeone bittersweet and evocative Wow - so many more posts since I was last here! For those who don't know me, I have lost the majority of my vision, so when posting here I would really appreciate it if you could make your font size a little bigger >< Thank you!
My name is Ailsa, by the way. (lots of you know me, but you know, I just thought I'd say it XD I haven't been around much lately because pain has gotten worse and it's official: my CRPS has spread. It sucks. But I'm off to finish my composition - if all goes ok, then I'll post it up on youtube - it's basically about my life with pain. Ugh, and then I'll probably crash. Boldie - I'm trying to last, I really am. I'll be replying to your PM now.
xx Ailsa xx
Ailsa, I know you're trying. And if it's the best that you can do, than I am in no place to say c'mon, Ailsa, pick up the pace. You do things at your speed, ok? I'm so proud of you. It's unbelievable. You were one of our first responders to this thread, and I thank you so much for letting us into your life. I think you're an incredible woman --even @ 17 -- I think, yes, you qualify as a woman, and the things you are forced to deal with-it's not fair. I know this. I would like to know everybody here and perhaps with the help of them, maybe you will learn to not do harm to yourself. (I know you know what I'm talking about) But your secret is safe with me, unless you say it publicy. But even so, I will hold what you have told me to my grave. I love you, girl! You're one courageous woman ! Godspeed to you and your family.
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Posted: Wed Nov 04, 2009 12:57 pm
AliciaLeone I live in Raleigh, North Carolina and I am 17 years old. Today has been a bad day... Bad two months actually... I keep getting worse. My pain and fatigue has been so bad that I have been laying in bed sleeping for most of the past two months. I have been sick for 4 years, the pain did not start until 2 years ago.
I am undiagnosed still, but I most likely have EDS and Fibromyalgia among other things. I am always tired, back pain, sensitive to touch, dizziness, OCD, ADD, poor circulation, orthostatic hypotension, sore throats, hot flashes, a suppressed immune system and those are just the worst things. I am extremely flexible to the point of ribs and vertebrae coming out of place and it is extremely painful. My tissues are so sensitive that my muscles flare up and become inflamed when a joint is out of place making it harder to fix and twice as painful. I do not have a diagnosis so they will not give me pain medicine. I am so glad I am homeschooled, because I would never be able to go to a regular school. My dream has always been to be a veterinarian, but I don't know if that will happen, I doubt it will. Especially surgery which is what I wanted because I shake too much. If I even made it through college I don't think I will ever be able to stand up all day... Or be awake all day. I don't fall asleep until around 3am and don't wake up until 1pm. It takes my mom over an hour to wake me up.
Last week I went to a new doctor that has given us hope, she is with the Fibromyalgia and Fatigue Centers of America. It will be alot of blood drawn, shots, IV's, and other not so fun stuff but I am praying it will help. Anything to help me live again. I have no friends. Not because they did not try, but because they have to live their own life getting school done, work done, preparing for college. I have my mom and my boyfriend and even they can't understand completely.
I used to sit in my bathtub crying for it to be over, holding my razor or knife, but I never had it in me to go through with it.
Alicia, I know other people who have said they were going to cut themselves, and I know people who do cut themselves. I, for one, have never thought about doing that. I have always, though, thought of taking my own life. Through a car crash, slamming the window down on my neck, stabbing myself with a long serrated knife.... But you know what? I become chicken. Even though I can only think of myself when I'm in so much pain, I still can't do it. Maybe, for one, because of my religion, it forces me not to do it, maybe it's because I will hurt my parents to no end..... I don't know. But I bet every single person in here has thought about ending their own life somehow. And I say DON'T!!!! You don't know where you'll wind up. You could have it worse in hell and then where would that put you then!! At one point, one of my doctors diagnosed me with fibromyalgia. And when I went to my neurosurgeon's office, he said, no, I don't have it, but I have so much more, what's one more diagnosis, right? That's how I felt. Today, for instance... I have doubled my pain medication, because I'm in so much pain. I hear kids outside having a good time, yelling, laughing, playing ball, whatever, and here I sit,.... inside, because I can hardly move a muscle due to my pain. I, too, suffer. And life isn't fair! How can it be? How can God allow this to happen, not only to me, but to others, as well? I lay on the couch and I just sob. Maybe I'm feeling sorry for myself... I don't know--but don't I have a right to feel that way? Life before all this happened was hard-trying to pay the bills, etc.... and I was healthy then! NOW>>>>>>> I can't even THINK about that stuff. It's way too overwhelming. Everything seems too overwhelming now. It takes me twice to three times as long to get dressed, or make coffee, or just walk through the house. And I know some people have it much worse off than I do. How can this be? Because when I'm in this much pain, it seems I'm the only one I can think of. I just can't imagine having skin so sensitive, that it feels like it's on fire. And, I can't imagine people going through all the other bad stuff out there. And then I feel guilty. I feel like I should be grateful I just have my severe chronic lumbar pain to deal with.I don't know. Now, I feel like I'm rambling. (and I do that Oh, so well... lol) But the short of the story is this. Please do NOT hurt yourselves worse than what you're already going through. Please, I beg of you. Madralyn and I and a few others would do just about ANYTHING to stop that from happening. We're a close knit family in here, and we need YOU. We need you on the "good days" when we're having the "bad days" to help get us through this. You will always be a part of our family now. (Those who have just joined) And I pray to God, that you will more have good days than bad days. Today, for me......... it's really a bad day. Earlier I was just sitting there on the couch and crying. Feeling sorry for myself. Feeling sorry for others who have to deal with pain. It's just not fair. But then again, who ever said life was fair? I pray Alicia that you will make it. I pray that everyone here will make it. In fact, there's one person in here, who has cancer. She's in remission currently, but how can a person deal with that? OMG! So, I'm asking,.... no I'm praying and hoping we can all get through this with each other. You're very special and we all need each other.Thank you for having the courage to be here in the first place, and thank you for the love and support I feel from each and every one of you. God Bless.....
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Posted: Wed Nov 04, 2009 1:02 pm
Godsbabybear Hi i want to be a part of your guild i am coming back from 7 days of heck i get so tired of being sick i don't get down much but OMG!!!!!! i have been so down i am 46 and have been sick well i think i was around 13 i have fibromyalgia, rsd it has been some hard times most of my family never believed me i am married for 26 years to a very good man who tries to help but i am sure he gets tired of it too his family never believed me either till one of there kids got it know it is real and know my brother has it so know it is real gets old but i still pray for them all my sister was the only one that i had to talk too god rest her sole she got really sick first and had RSD all through her body and at age 40 her body just could not take any more i have 3 awesome kids but i am at the point that i just can't stand to be me any more i feel so bad i feel like i am so nasty all the time and i hate it i thank you so much for being here and waiting on me this is a very hard thing to do for me all i can do is cry and type after my sister passed my mother was not long after her so i have my daddy and 2 brothers i have a shunt in my head i only had to do that 5 times for them to get it right i live in NC Fayetteville i hope to talk to all of you at some point i have met a few really good friends on here i used to be able to help others but have been off more then on
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Posted: Wed Nov 04, 2009 2:38 pm
I never thought of cutting myself, it was more to take my life to make it be over. I am beyond that now thanks to God, my mother, and my love, but for the first 2 years it was a constant thing on my mind that I thought about.
Yeah, when I work at the zoo I take care of the animals, care for newborns, give any medications, handle the animals, teach the public, etc. I loved it, but I have not been in a while and that makes it harder because it takes my sense of purpose away.
My boyfriend does understand, he understands the most out of anybody, and I thank God for him everyday. He doesn't let me give in to my problems, but he won't push me either.
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Posted: Wed Nov 04, 2009 3:22 pm
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Posted: Wed Nov 04, 2009 4:20 pm
AliciaLeone I never thought of cutting myself, it was more to take my life to make it be over. I am beyond that now thanks to God, my mother, and my love, but for the first 2 years it was a constant thing on my mind that I thought about.
Yeah, when I work at the zoo I take care of the animals, care for newborns, give any medications, handle the animals, teach the public, etc. I loved it, but I have not been in a while and that makes it harder because it takes my sense of purpose away.
My boyfriend does understand, he understands the most out of anybody, and I thank God for him everyday. He doesn't let me give in to my problems, but he won't push me either.
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Posted: Wed Nov 04, 2009 4:22 pm
Well, this particular thing doesn't really go in here, and I was just getting ready to eat supper. Do you think you could use one of the Gaia forums/threads to ask? Thank you so much. I'm sorry. I don't want to come off as an old hag lol, but yeah, see if you can get followers from the Gaia threads. ok? Thanks a whole bunch.......
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Posted: Wed Nov 04, 2009 7:01 pm
Why, hello everyone.
I miss being on Gaia and talking to everyone. I see that we now have news members.
For those of you who I haven't talk to yet, I am auntiesocial 8b. I do not have chronic pain myself, but someone very near and dear to me does. That is how i know some things about people with chronic pain.
I normally am active in the guild but recently, I had to focus on life outside of cyber space. Welcome to this guild and I welcome you to this thread. I hope this thread has helped you! =)
OMG HI BOLDIE< WOLF, AILSA ( I hope you get my letter soon! =)), AND MADRALYN.
I'm going to start slowly returning to Gaia, I hope (Sorry, I know this is off topic.)
buti do hope that every one is doing better today. and theres always tomarrow.
Well, I have been uber stressed this past month. I'm still working on my college apps, almost done yay! School is finally leveling out, and I am realizing how to control the things around me. Also I have only one major test for my college apps to worry about and then I can really focus on the things I want to.
Sorry for blabbing. It took me a while to read the posts but I did get to read some of the posts. My prayers and thoughts go out to everyone.
Have a nice night.
Love,
as8b
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Posted: Wed Nov 04, 2009 8:10 pm
Quote: Alicia, you are very lucky to have a boyfriend stand by you. Can I make a little teeny-tiny suggestion to you? Never take that for granted. In here, one of our members just lost her boyfriend because he couldn't handle her pain and whatnot. I just want the best for you, even though I really don't know you that well, never-ever take anything like that for granted. You are not married to him, and he has every right to just split. I know that sounded harsh, but it does happen. Just make sure you guys talk a lot and have trust between yourselves. I may be stepping over the line, and I really, and truly don't mean to. I'm sorry. Very sorry....I'm just worried-- Call me "Mother Worry-Wort". lol I just care.
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Posted: Wed Nov 04, 2009 8:13 pm
Long absence from this thread, but I'm thrilled to pieces that some new people are here!
Introduction, I'm Kira, yeah. I have.... no chronic pain but whenever I AM on, which isn't near enough, I do want to try and support people who are.
I just.. wanted to bring one thing to attention.
On November 13th, nation wide is the TWLOHA day. Erm, all spelled out it's, To Write Love On Her Arms. Ah.. I'm sorry, I'd post a link, but to those of you on facebook, you can search it on there. Anyway. It's like... a support group. For the depressed, the addicted, the suicidal, the cutters and other people who self harm.
Man, it's for them, for you, for everyone.
One of their statements: Love is the answer.
Everyone here is loved, and has contact with such a beautiful support group right at the tip of their fingers... And I'm rambling but.. ANYWAY. Novermber 13th. It just.. goes with what the group is called. If you want, if you can, write the Love, on your arm. And think about the meaning of it, really. I personally think Boldie is an excellent example of care and love... *rambles, is sort of failing with this post* If.. people have questions I can try to answer.
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Kira-fightingdreamer Crew
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Posted: Thu Nov 05, 2009 5:18 pm
Just stopping in to send more gentle hugs and warm thoughts to everyone. I will try to remember to make my text larger so those who have vision problems can see it. Hugs and love to everyone.
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Posted: Fri Nov 06, 2009 9:50 am
Remember all those in your lives who have suffered from childhood cancer either themselves or through a loved one. They have gone through so much and every time someone remembers what they went through/or are going through, a fraction of their pain is lifted.
boldie/dreamed integrity
PostPosted: Fri Sep 11, 2009 4:35 pm
bittersweet and evocative Wrote:
Hey, Boldie I just saw that on your post here, you said that you were hoping the Hugs Soft, Love Strong was going to be a place where people would be able to let things off their chest. Well let me just say that not only this has become true, but it's done so much more. Thank you so much, and for anyone who hasn't checked out this thread yet, you should do so without further ado. You come away somewhat in awe of people like Boldie and Madralyn, but also with a smile on your face after reading of the way they live alongside their illnesses. They amaze me every single day. xox
Ailsa, You forgot to add yourself to the list. You have a very debilitating disease yourself, so I think it should be only fair that you include yourself in the comment "they live alongside their illnesses." And every person is different, their pain is different, the area where the pain is, is different, and there's just so much love, support and friendship going around in this thread, it's hard NOT to come on in and be supported yourself. It's a wonderful avenue for people to come in and unload what is going on inside your mind, and how you can cope better with your own disease. So.......... COME ON IN !!!!!!! icon_biggrin.gif OH! btw, this is boldie. lol I forgot which account I was under. *giggles
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Posted: Fri Nov 06, 2009 10:36 am
Kira-fightingdreamer Long absence from this thread, but I'm thrilled to pieces that some new people are here!
Introduction, I'm Kira, yeah. I have.... no chronic pain but whenever I AM on, which isn't near enough, I do want to try and support people who are.
I just.. wanted to bring one thing to attention.
On November 13th, nation wide is the TWLOHA day. Erm, all spelled out it's, To Write Love On Her Arms. Ah.. I'm sorry, I'd post a link, but to those of you on facebook, you can search it on there. Anyway. It's like... a support group. For the depressed, the addicted, the suicidal, the cutters and other people who self harm.
Man, it's for them, for you, for everyone.
One of their statements: Love is the answer.
Everyone here is loved, and has contact with such a beautiful support group right at the tip of their fingers... And I'm rambling but.. ANYWAY. Novermber 13th. It just.. goes with what the group is called. If you want, if you can, write the Love, on your arm. And think about the meaning of it, really. I personally think Boldie is an excellent example of care and love... *rambles, is sort of failing with this post* If.. people have questions I can try to answer.  
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boldie64 generated a random number between
1 and 7 ...
1!
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Posted: Fri Nov 06, 2009 10:50 am
For those who don't know about our "page system," we give out gold for every 10 pages.
10th page=100 gold
20th page=200 gold
30th page-300 gold
and so on....
and so our recipients for Page 20 are:
1.Godsbabybear
2.Xx The dark Angel
3.AngelBaskets
4.Gin-Gin_Version2
5.AliciaLeone
6.Ailsa (Bittersweet and Evocative)
7.Lindsy (A_Wolf_Drowing_in_Blood. and the winner is: Godsbabybear !!!! Congratulations !
The recipient will receive $200.00 via trade for page 20!!   (I tried to stay in theme with the bears. lol)
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Posted: Fri Nov 06, 2009 1:14 pm
i want to thank you so much for the gold every little bit helps i used to think about ending it but i know that god and my kids and hubby would be so up set so i just try to keep going pain and all some times i just sit and cry a lot i have no friends they are all to busy to deal with someone that is sick i hate being alone all day but what can you do i used to drive but i am on way too strong meds so i gave up driving so i sit home all the time i don't think i will ever get used to that i used to have a ton of friends so it is way hard to get used too if anyone wants to talk just write me okay hope everyone has a better day
big huggles
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