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joaney
05-15-2009, 05:39 PM
Hey guys, this is my fifth attempt trying to post a message. I don't know whether it's my computer playing up, but my messages are failing to post. If anybody can view any of my recent messages, could you please let me know. Okay... i'm from Australia, and i was diagnosed with lupus just over a year ago. I don't know anybody with lupus, and i would love to talk to somebody in my position. So if your up for exchanging stories, i'm waiting to hear from you. Thanks in advance.

mountaindreamer
05-15-2009, 06:20 PM
hi joaney,

first, welcome to our little family. there are so many people here from all around the world, so i call the forum our family of the sky.

so sorry about your diagnosis, but this is a great place to share stories, and learn from each other. We are always here whenever someone needs that little extra encouragement, or if they just need a cyber hug.

so sorry about the computer problems....i am horrible at the computer, but we have several very capable members who will be along very soon. Thank you for choosing this forum to join....i look forward to sharing stories with you.

Rastagirl
05-15-2009, 07:29 PM
Hello Joaney... :wavey:

Welcome to WHL...glad you found us. Sorry you're having problems posting...happened to me too when I first joined up. If you look at the upper left corner of your post, you'll see it has the number of posts you've made. Right now it reads only 1 post. Looks like your other attempts didn't make it unfortunately.

When you start a new thread and type a post, what happens when you click on 'Submit Reply'? There should be a pause for a moment and then it posts. The first few times I tried to post, when I would hit the 'Submit Reply' button, my entire post would disappear. That was so frustrating, so now when I have a long post, I always copy it, with Control C, just in case it disappears. Then at least I don't have to retype. I just open a new post, and paste it back in. Not sure if this is the problem you're having.

I'm Lori and I was diagnosed with Lupus at age 18. I've got a few years of experience with it...I'm happy to answer your questions. I was diagnosed right out of high school and had a pretty rough time for about the first 5 years. I've had to take Prednisone for quite some time, quite a few of those years it was Prednisone combined with Imuran. I'm married and I have 2 children, a son and a daughter. I live in the U.S. on the West Coast in Portland, Oregon.

Do you have a good doctor that's taking care of you? Are you on any medications for your Lupus? What kind of symptoms do you experience? Go ahead and tell us your story....I know others will be happy to share theirs.

We have another member on here that's from Australia, her name is Hazel. Hopefully she'll be along soon to say hi.

If you're interested in learning more about Lupus and how to live with it and take good care of yourself, you should go to the forum called 'Lauri's Lounge' and look for the 'Sticky' posts that are right at the beginning. They are full of valuable information from some of our knowledgable veterans.

Sending you welcoming cyberhugs... :hug:

Fondly,

:cool2: Lori

joaney
05-15-2009, 07:46 PM
Hi Phyllis, thanks for your reply. I think i'm getting the hang of things now. I think my first message may have been too long, and thats why it was not posted. Well, where do i start. I'm 30 years old, and was told early last year that i have lupus. First i was in denial, then the symptoms started getting really bad. I had no choice, but to come to terms with the "lupus". I was hoping and praying everyday that this had all been a mistake, but now i know this is something i'm going to have to learn to live with. The first 4 months were the hardest. Depression hit hard, but my 2 young children were an everyday reminder that i had to keep on going. Since then, all i've been doing in my spare time is researching this disease, i've learnt alot, so hopefully i can be of some help to those wanting to understand more about the disease. My only question now is "what does the future hold for me". I know that no-body can answere this question, and after reading tonnes of information about lupus, my most important question still remains a mystery. The hardest part about this illness, is the fact that no two lupus cases are ever the same,so you never know what might happin. Hope to hear from you again, and maybe you can tell me abit about your experiences with lupus. Joaney.

rob
05-15-2009, 08:21 PM
Hi Joaney,

I'm Rob, and I'm a Moderator here. I looked at your personal user settings as a member here, and I didn't see any reasons why your posts would not show up. If you still have problems posting, let me know via personal message, or by a message on my profile page, and I will ask the site owner and admin if this is possibly a software problem with the website itself. We'll get this worked out-welcome to our group.

Rob

joaney
05-15-2009, 08:46 PM
Hi Lori. Thanks again for your reply. I think i'm getting the hang of things now, although i can't concentrate properly at the moment, as my 2 children are trying to climb over the top of me, so sorry in advance for any mis-spelt words. I read your post, and i felt sad to hear you were diagnosed at age 18. I'm glad you had the courage to have children, as i have read alot about women who are too scared to get pregnant because of certain complications. You are an inspiration to all those women, and proof that having a baby is still possible. I hope all is going well with you right now. You asked if i was on any medication, and for the moment i'm taking nothing. My symptoms are mild, and i have not yet had a flare up. My joints are constantly sore, and i always seem to have a few ulcers. The joint pain hurts alot after waking up in the morning, and after sitting for too long. The pain is constant, but bearable. My thighs and forearms hurt from time to time, and when that happins, my body feels very weak. My rheumatologist, who i see every 3 months, tells me i should'nt worry too much, but i'm scared that the lupus may just be progressing slowly, and that one day soon, it's going to effect my entire body. I have a high homogeneous titre and centromere titre (>640)which indicate a mixed connective tissue disease of scleroderma. I also have a high cardiolipin IgM AB, which could be an early sign of antipospholipid syndrome. I'm trying to stay healthy, and do all i can to try and stop my situation from getting worse. I'm hoping for better days to come, as at the moment a feel twice my age. Hope to hear from you again, Joaney.

joaney
05-15-2009, 09:08 PM
Thanks Rob, i would'nt have a clue what happened to the other posts. I know one of them was too long, and it probably did'nt help that i was writing them at 2am in the morning.:wacko: Thanks for introducing yourself, i have had a warm welcome by all who have replied. Talk to you again soon, Joaney.

mountaindreamer
05-15-2009, 09:12 PM
hi joaney,

i see you have mastered the posting process. I am so glad, and i am especially glad that you have joined our group.

we suspect that my lupus symptoms started in my mid 20s. for many years, i went day by day with no symptoms (probably in remission). In 1996, my symptoms hit hard, but i was diagnosed with fibromyalgia and struggled along until october of last year when my rheumy diagnosed me with lupus as well.

i am surprised that your rheumy did not start you on plaquenil. It takes up to 6 months to work, but many people get lots of relief from the drug. It actually slows the progression of lupus, and is the standard treatment used by rheumies. You might want to ask your dr. about it, you might be able to get some relief from your symptoms.

I am glad your symptoms aren't too bad right now, i know with two little ones, it is difficult for you to find the time to feel poorly.

how old are your children?

you are concerned about what is in your future. There is an interesting thread in "Lori's lounge" that addresses what each of us used to do before lupus changed our lives. Lupus does change your life, but life does not end. What used to be normal, is no longer....you have to set new "normals" in your life, but, life does go on.

Have you read about protecting yourself from uv rays. Sun blocking is crucial for the prevention of flares. sun exposure can send you into a flare, or increase the intensity of a flare.

hope you are having a great weekend.

joaney
05-15-2009, 11:44 PM
Hi Pyllis.
I'll be asking my rheumy about plaquenil on my next visit. He always askes me what level of pain i am in, and i always say that it is bearable because i thought that if i didn't need medication, it's probably better if i didn't take it. I've read abit about this drug in the past, and i know it can cause serious side effects, however this is unlikely. I thought plaquenil was mainly to help prevent inflamation, and i did not know that it may slow disease progression. I'm very thankful that you have provided me with this information, as now i'm begining to wonder whether i should be placing my life in this doctor's hands. I'm wondering how long you had remission for? You said you suspected your lupus started in you mid 20's, but if you don't mind me asking how old you are now?
I have 2 boys aged 5 and 2. They are a handful. Do you have children?

I have read alot about the sun, and flouro lights. I've never had any type of rashes related to lupus, but i always take care by wearing UV clothing, hats and sunscreen. I think people must think i'm crazy because i'm always covered up when outdoors. I have not yet told my family about my lupus, and they are always telling me to get abit of sun. When i say "family", my husband knows, i mean my parents, my brothers, and sister. They don't know. I don't like to worry people, after all, everybody seems to have their own problems to deal with. My family are "stress heads":wideeyed: I don't want to stress them out until i have to, until my signs become obvious.

So where are you from? Has your lupus been giving you any problems since you were diagnosed in october?

Lupus is'nt very well known about here in Australia, the first time the doctor uttered the word lupus, i did not know what it was. The only thing that came to mind was a "seinfeld" episode, when George started freaking out because he thought he had lupus. When i went home and looked it up, i began freaking out. I could'nt believe it. I spend alot of nights wondering what it could have been that triggered this off. I remember getting sick alot as a child. Virus after virus. It seemed i had a cold/flu that lasted around 1 whole year. My mum would say they were allergies, like hay fever, but i always had that sick feeling that went along with it. Then i start thinking about all the pollution thats around us. While growing up we lived right near a highway. Our back fence faced the front of that highway. I lived in that house until i was 20. Then there's the stress and trauma factor. I suppose we have all had our fair share of that. Hormones? I'm not sure how this effects lupus, but being that 90 out of 100 people with lupus are women, i suppose hormones must have something to do with it. I'd like to know what think about this. I'm sure it's crossed your mind. I don't think it's anything we have done wrong, but something that might have happened to us while growing up.

Thanks for reading my message, and thanks again for the info. on plaquenil. Hope to hear from you again, Joaney.

froggal
05-16-2009, 12:50 AM
Hello and welcome! I am sure you will find all the friends you could possibly want here!! There are wonderful people here ready to listen, talk, laugh, and we give good hugs!! I am very happy that you found us!! ~ Angie :cute:

Hazel
05-16-2009, 01:24 AM
Hi joaney, glad you have come here to share our stories! I am quite new here too but i have found this place really helpful when you need someone to listen. Everyone here is really helpful and i hope you find it very useful as well.

If you ever need any advice or even just a chat feel free to send me a message! I just love getting messages!
:)

xx Take care!

joaney
05-16-2009, 03:00 AM
Hello to Angie and Hazel.

Thanks for making me feel so welcome. I think i will enjoy my time spent here, as everybody has been so nice and helpful. Hazel are you the girl from Australia, if so where abouts are you from? I'm from Melbourne. I'd love to hear your story, i don't no anybody from here who suffers from lupus. Anyway, putting the kids to bed now, i might be back later. Joaney

TobyJug
05-16-2009, 05:52 AM
just wanted to say welcome...

chin up

mountaindreamer
05-16-2009, 06:04 AM
hi joaney,

i know you are frightened, and are confused about what is in your future. the diagnostic process and the beginning of treatment is a very difficult time, and makes all of us worry when we are facing everything.

I too wear full body covering clothing whenever outside. People probably stare at me, but i don't care....it keeps me from flaring. The uv rays don't just cause a rash, they rays will cause extreme fatigue, painful joints, etc.

I am 56 have 3 grown children, and two grandchildren ages 4 and 5. My middle daughter got breast cancer 2 years ago, so i moved to live close to her and the grandkids....i now live less than a mile away from them, and i get to enjoy their visits almost daily.

The reason my dr. and i think that my lupus started in mid 20's is because of several illnesses that i had...i had 2 bouts with pnemonia, 1 miscarriage, endometriosis which resulted in a hysterectomy, and then i went through premature menapause at the age of 32. These were the main things that made my dr. think it started when i was younger.

As you know, they don't know the cause of lupus, but i don't really see how it could be enviornmental. For some reason, our bodies produce antibodies that are confused, and attack the good things in our body. I grew up in the country away from city pollution, and did not move away until i was almost 40.

Your " stress heads" comment brought my first giggle of the day...thanks for that. I understand your hesitancy to tell your family, because no one really understands the magnitude of this disease. However, i have found that by telling others, that they do not push me to do things when i say no. They seem to accept it when i have to decline from participating in family plans, and when i just have to stay in and rest.

My pain was "bearable" for years, then this past summer, it changed and i could not handle it anymore. My rheumy tried the Medrol injection, it worked, and i got a couple months of relief. I have been struggling every since, and am just now getting some relief. We started on plaquenil, and it helped some, but i continued to suffer. A couple of months ago, i finally agreed to taking the methotrexate shot (i give to myself once a week). I hate the day after because the side effects make me sick, but the rest of the week i really feel better. I know there are possibly severe consequences of a "chemo" drug, but i have decided to face those when they come. For now, i am getting some relief, and am able to maintain an almost "normal" life.

My oldest daughter just returned from working in Sidney for 2 months. she loved it and sent beautiful pictures. I live in Georgia, and i think you are probably 13 hours ahead of me. Are you on same time as Sidney? (sorry, brain fog will not allow me to remember the correct spelling right now). I hope you are having a peaceful and painless night's sleep.

Angel Oliver
05-16-2009, 10:30 AM
Hi Joaney and welcome....or gud day!! Catch up with you very soon.

love
Angel.xxxxxxx

Pearl
05-17-2009, 01:16 AM
Just wanted to add my welcome. Glad you found us.

Jana

AChronic
05-17-2009, 01:34 AM
Welcome Joaney.

maguadalupe
05-17-2009, 05:32 AM
We our all are for you . dont' feel bad we will all help you understand .

take care
maria

joaney
05-17-2009, 07:19 AM
Thanks for the warm welcome guys, I have'nt had much time this weekend, but i'm looking forward to catching up with you all during the week.
Phyllis, you should have a message from me in your inbox, but i'm not sure if it failed to reach you, as after posting the message, I had no confirmation.
I hope you all had a good weekend, bye for now, Joaney.

dsunshine
05-17-2009, 08:20 AM
Welcome Joaney! you have come to the right place to exchange stories or anything else. We all chime in and support one another and you will be quite surprised once you start writing things on how you feel or different things that happen to you as it has certainly happened to someone else. I find the support and understanding quite comforting. This site has brought more friends/family who do have lupus into my life. Although my family is supportive the people on we have lupus understand without question how I feel and what I go through. So write away! Don't be shy or afraid. We are here for you...Welcome again!

joaney
05-19-2009, 05:20 AM
Hello everybody.
Wow, you are certainly a beautiful bunch of people. I don't think I could have found a nicer goup than this one. Your all so kind, and welcoming. I just want to say thanks for making me feel like I belong. Not many people around me know that I have lupus, so it's nice to come to a place where people understand what i'm going through. My husband is forever telling me to just try and get on with life as best as I can, and that everything will work it self out. But that is alot easier said, than done. Lately, I have been feeling hopeless. I know that things could be alot a worse, but I guess I can't help the way I feel. I'm not scared of getting sick, i'm not upset that changes need to be applied, the way I look does'nt even matter any more. At the begining of my diagnosis, these things all bothered me, but now that reality has really hit, I guess the only thing that matters now are my two little boys. The thing that scares me the most, is my children being left to face this world alone. When raising your children, these are meant to be the best years of ones life. Instead, I live my life everyday, scared of what tomorrow might bring. I feel like i'm up against a wall, with no where to turn. Is it selfish and sinful to lose faith at a time like this? I feel so many things inside. It's hard to explain...It's like when you borrow something, but you can't get too comfortable with it, because you know that you have to give it back. Well, thats abit like how i'm feeling. I feel like there's no comfort in my life, and that i'm living on borrowed time. I feel like i'm at war with myself, and no matter what,I know this battle can't be won. What do you do to make these feelings go away? Does it ever get better? I've always been optimistic, but this time, I can't see the light at the end of the tunnel. I can't believe that my life will never be normal again. I just want to wake up one morning, without "lupus" being the first thing on my mind. Life as i once knew it, now feels more like a life sentence. How do you over come these feelings? It's not depression. My life is still as active now, as what it was 2 years ago. I look after my 2 year old son during the day, take my other son to and from school, I have no problems getting out of bed, and twice a week, I catch up with my old high school friends, I still manage all my daily chores, it takes me a little longer these days, but everything gets done. Despite the feelings that bring me down, I still manage to laugh a lot. I'm vey close to my brothers and sister, and lucky for me, all 3 of them think they are a bunch of comedians. They don't know that I have lupus, I don't want to worry them, but it's better this way, because if they knew, they would probably start acting all serious all the time, and I much prefer to laugh with them, then to cry with them. So back to where I was before, I don't think that this is depression. The feeling of not know what life is going to throw at you next, is probably one of the worst ways to feel. Everybody on this site has probably felt this way during one time in their life. So, I hope I can be there for you guys, just as you have been here for me. Thanks for listening, and I am looking forward to getting to know you all here, Joaney.

rob
05-19-2009, 08:55 AM
Hi Joaney,

There are very few people in my day to day life who are willing to open up and talk about what's bothering them. It's not easy to talk about our fears, our flaws, or our struggle to find answers and meaning in our lives. With that in mind, your open, honest words really stand out.

So much of what you are saying could easily be my own words. I have many a long night where I sit, and wonder why. Why lupus, why me. I am very conflicted much of the time. So many things don't make sense these days. I got my lupus diagnosis five years ago, and my MS diagnosis only 1 year ago. I can't help but wonder what will become of me. I feel very much like I am living on borrowed time, but I do things every day to get away from that state of mind.

Most of my conflict involves a rather twisted way of thinking. I think, that I should not allow myself to actually enjoy anything or become attached to anyone or anything. My logic being that when I die it won't be as emotionally painful because there's nothing and nobody I like anyway. With no attachments, it will be much easier to just let go. How totally screwed up and backwards is that?

Of course, there are so many things I love very much. Family, my cats, my friends here, and the interests and hobbies that take me away from lupus for a little while. The way I keep the confilcted thoughts out of my head is by knowing what I used to consider "normal", is gone and never coming back. Illness has imposed a new standard of normal on my life, and there isn't much I can do to change that, so I accept it, and I am constantly creating a new normal for my life. All my grand plans for my life basically disappeared. A wife to be, an absolute dream job of a career, and people I thought were friends-all gone.

For the longest time, I would not let go of my plans, my old dreams. It was miserable to be that way. Finally, I figured out that just because my master plan was no more, that did not mean I couldn't create a new, if somewhat less ambitious plan for my life. Every day I make more progress towards creating a new plan, a new normal, a new life. I've discovered people places and things that I would never have known had I never been diagnosed with lupus. They are some pretty damn good things, and I would never have discovered them had lupus not entered my life. I have bad days, but I also have some pretty good days. I tell myself when things are bad that I still have plenty of good days yet to come, and being able to look forward to that keeps me going.

There are no easy answers Joaney, I wish there were. Every person, and every case of lupus is different. Just know that there are things that you can do to live your life and thrive despite lupus. It can be pretty rewarding to poke lupus in the eye and have a great life despite it. I can't tell you the answers, but the answers for you are out there, and you can indeed find them. It will take effort, courage, and a stubborn will to win, but you can do it. As far as the feelings of living on borrowed time, well, we all live on borrowed time. It could all end tomorrow, or when we're 100 years old. People can live long productive lives with lupus. Nobody really knows when their time on this Earth will end, so worrying about it is unproductive. Things will not be easy, but lupus is by no means an automatic end. I appreciate your honesty, and willingness to talk about some very difficult things.

Rob

mountaindreamer
05-19-2009, 10:08 AM
hi joaney,

hope you are having a great day with your little one. You know, Rob is right....we all live on borrowed time, and none of us know when that time will be up. A life-changing illness like lupus brings this reality to the forefront, and puts it in our faces, creating so many questions and fears.

I too faced all of this....i remember having to update my will, address "advance directives", etc....all of this slapped me with the reality of immortality. I don't know how or if ever we get past these questions dominating our day, but it happens....eventually, the questions will be there, but not so in your face, and will not hit you every morning when you open your eyes.

My children are older, but i have sat with each of them and discussed my preferences for my care in case something happens and i am unable to care for myself anymore. I am 56, and feel this is too young to be having these conversations with my kids, but this is my new reality....my new normal. Also, i was so stressed because i felt this was unfair to my kids, they should not have to worry about their mom at such young ages. Now that we have all gotten past this awkward phase of having to sit down and talk about the things that none of us want to even think about, we go on with our lives each day, and lupus no longer dominates our days,because we worked through the questions. My girls have gone to drs, appts., browsed this forum, and being informed appears to have helped them understand where i am and what might happen.

I know you don't want your family to worry about you and change the way they act around you, and i commend your bravery. However, being forthcoming with them will provide the opportunity for all of these questions to be answered, and a new life can begin without you putting more stress on yourself. For so long, i tried to go on like nothing was wrong. Since i have been honest with those in my life, i no longer feel guilty if i have to take a break and just care for myself.

joaney
05-23-2009, 06:13 AM
Thank you both for your inspiring replies. Sorry it's taken me so long to respond, but I really have'nt had much time the last few days. Both of your replies gave me alot to think about. It's amazing how somebody you don't even know, can have such an effect on the way you think and feel. I don't know either of you, but as I read your replies, tears came rolling down my face. My heart goes out to both of you. Even though it does feel comforting to know that I am not in this alone, I would never wish such an illness on anybody. Rob, it made me sad when you wrote that you don't want to allow yourself to enjoy anything, or become attached to anyone, because that is the same way that I feel, and I know how much hurt you must be feeling. When I first found out about my lupus, I said to my husband that if I had of known that this is what would become of me, I would never have got married, and had children. It would have made it so much easier for me just to let go, and give up. But when I think about my life now, I think that my children are the reason that i'm still here. Sometimes you need something or someone to live for. To pull you through...To give you a reason to live. We all have many reasons to live. And just because we are sick, it does'nt mean that we deserve less, than the healthy person standing beside us. I guess what i'm trying to say is that we should all make the most of what we are given. Your absolutly right when you say that bad days will come, but plenty of good days will soon follow. And I hope and pray that good days will follow you both for decades to come.
Phyllis, even though your kids are older than mine, you have made me relize that it is just as hard for you, as it is for me. I worry about my kids losing me at such a young age, and think it would be so much easier if this could have happend 10 years from now. But i geuss, it's never the right time for something like this to happin. No matter the age of our children, I guess the worrying never stops. Your right, it's not fair that the children should have these sort of things to worry about. I guess being strong and showing them that we are still happy despite of our illness, would probably take a load off their shoulders.
Mum has always said to me, that a little bit of good comes out of everything, and that in everything, there is a lesson to be learnt. I guess having lupus has taught me how valuable and precious life actually is.
I hope we can chat some more soon, and help each other get through this.
Is there some type of chat room on this site, or do I continue writing on this page? The night I posted my last message, I went into the chat room, but I was'nt sure how to use it, or whether it had been up and running.
Well, thanks again for listening, and hopefully we can chat some more.
Joaney.

mountaindreamer
05-23-2009, 07:59 AM
hi joaney,

what a valuable new member you are....i look forward to learning "a new life" with you.

if there is a chat room on the forum, i don't know about it....but i am probably the most computer illiterate among the group, so maybe someone else can help you with this.

i remember being so frightened when first diagnosed (even though for years i suspected that lupus was attacking me). With the help of my "family of the sky" here, and with time, i moved past this fear and i now accept my "new life". I am learning that i can "live with lupus", but it is just different than before. I worry when new symptoms hit me, and i get just plain pissed off when i go into a flare, but i now know that the flare will subside eventually, and that i will be able to enjoy some good days. I am so glad to see you admit your concerns....because you are facing reality and you will eventually put everything into perspective and your life will go on.

yesterday, i was having a really tough day....my grandchildren came over and i was worried about them seeing me so down...but guess what, we sat on the couch, watched cartoons, and they just enjoyed being with me (even though i was not my usualy perky self). They are learning to accept me for who i am and they know that i don't always feel good....the great thing is that they still want to be around me. Today, i realize how important this is, and i am so thankful to have these little ones that don't have unrealistic expectations for me. I am sure your little guys will reach this same point, once time has helped them understand the new "normal" that affects your family. A couple of weeks ago, my grandson wanted me to take him roller skating. He told his mom, "unless gran gran is sick or on vacation we are going skating." At first it broke my heart that he had to accept my illness as such a reality, but now i know that he understands when i just can't do all of the fun things that we would love to do... by the way, we did go skating, and had a blast.

hope you are having a fun weekend, even if that fun is sitting around watching cartoons with your little guys.

Pearl
05-23-2009, 08:43 AM
Your fear is something we all understand, and as you can see from Rob and Mountaindreamer, it is a fear shared by all of us at one time or another. I just wanted to add a little different perspective.

I recently walked through the valley of the shadow, as they say, and surprisingly, it wasn't lupus that was trying to end my life. It was something totally unrelated, and totally unexpected. I spent most of December in the hospital. I refused to sleep at night because I did not want to die without seeing my husband and my children one more time. Fear crept in without knocking, an sinister visitor that refused to leave. Until one evening, when a dear, lifelong friend came to see me. She took one look at me and immediately bowed her head and began to pray. During her prayer, she looked at me and said, "Jana, are you afraid?" I told her I was. She replied, "I am too. But I believe with all of my heart that you can beat this. You have to believe it too." She prayed for me again, told me she loved me, and left. That night, I faced fear head on. I had to. This is not to say that I was suddenly and miraculously unafraid. Rather, I decided that instead of letting fear control me, I would use that fear to motivate me in everything that mattered from that point on. It motivated me to get some personal things in order. It motivated me to tell those around me how much I loved them. It motivated me to fight and to recover. It motivated me to live.

I share this with you with the hope that you will find a way to fight through the fear with all of your might. Don't let it steal another precious moment of your life. As Rob and Mountaindreamer so aptly stated, none of us knows how much time we will be blessed to have here on this earth. Face fear directly. Stare it down. Decide to defeat it. And when you need some support in doing so (as we all do) come here.

I wish you well.

Jana

Angel Oliver
05-23-2009, 05:15 PM
I just want to say to all who have posted here.....WOW....love you all.xxxx

joaney
05-25-2009, 05:17 AM
Hi guys,
I don't really know what to say after reading Jana's response. It seems that alot of people here have really been through some tough times. It's great how a few simple words of wisdom, can give somebody the ability to believe that they can overcome the fear inside of them, and with that belief, comes hope, and strength. Jana, sometimes all it takes is that one special person to guide us through and help us find our way, and thankfully yours came along at just the right time. I hope you sleep much easier these days, with the love of your husband and children beside you.
Pyllis, you made me smile when I read that you were watching cartoons with your grandchildren, because all I did over the weekend was stay indoors, and watched cartoons with my kids. The weather is cold at the moment, and the swine flu has just hit our shores, so i'm doing all I can to stay away from public places. The swine flu is very close to home. So far it has effected 4 schools, and they are all very close to where I live, and where my son attends school. The closest effected area is only about a 10 minute drive away, so i'm going to stay away from the major plaza's, and play centre's. So my children were "bored" over the weekend, so I made some pop corn, turned up the heat, through a few blankets over us, and watched cartoons and movies all weekend. I have to say it was very relaxing. I guess it's times like these that really count for something. Spending quality time with our families is really priceless. It's funny because 2 years ago, I would'nt have appreciated little things like that, but when you get sick, those little things really do mean alot. You learn to appreciate things alot more, and that's a good thing. So I guess that with every bad thing that happins in life, something good has to come out of it.
Well, I hope you all have a good week, and sorry in advance if I don't write back straight away. I write these posts once my kid's have gone to bed. Some nights after they are in bed, if I have had a big day, I go to bed straight after them, and don't even have the energy to turn the computer on.
I geuss most of you can relate to that.:sleepy:

JOANEY

mountaindreamer
05-25-2009, 06:38 AM
hi joaney,

you are so correct, we learn to appreciate little things like watching cartoons and eating pop corn, whereas there was time that you would have been completely bored with such a weekend.

Jana, thank you for your words...you are absolutely on target....this disease has also forced me to face my fears. It put everything in my face, made me step up and take note, put my affairs into order, and tell my family and friends how much i love them.....it has actually brought some peace to my life, because now my fears are faced and i am prepared for whatever is in my future.

Angel, i love you too.

Saysusie
05-25-2009, 01:10 PM
Jana;
Thank you, so much, for your beautiful words and for opening up so much in order to help someone else. What you said was very inspirational.
I have not participated much in this thread because all of you were being so kind and informative to our new member, Joaney. I just wanted to thank all of you for providing encouragement, wisdom, understanding and acceptance. I also want to say, as Angel Oliver said, I truly love you all!

Joaney..I am so glad that you've decided to become a part of our family and that you've found that doing so has been helpful to you. Yes, many of us have been through the fear that you describe, as well as bouts of deep depression and uncertainty. With the help and support of others (like our WHL family here), we've found that we are not alone, we are understood, and we are genuinely cared about. These are things that I hope that you've felt from our members here. We are here to help one another and to support each other and to make sure that each of us never feels along! Welcome to our family.

Peace and Blessings
Namaste
Saysusie

joaney
05-25-2009, 05:24 PM
Hi Saysusie,
I am glad to finally meet you.
Before I signed up for this, I spent a few weeks reading alot of threads. I don't know why, but it was very hard for me to make the decision as to whether I should sign up or nor not.
I have to admit that your threads are what inspired me to sign up here. You choose your words very well. You made me feel better about alot of problems which I was facing at the time.
I'm glad now that I am here, as I have met alot of wonderful people. So I have you to thank for that, so "thank you".
I hope that I can do the same for somebody out there. If anybody is reading these threads, and wonder whether they should sign up, JUST DO IT:)
You have nothing to lose, and everything to gain. Even with wonderful support at home, it is always nice to talk to someone, who knows exactley what your going through.

Have a great day, and thanks to everyone for making me feel so welcome. :)
Joaney

joaney
05-25-2009, 05:27 PM
Hi Saysusie,
I am glad to finally meet you.
Before I signed up for this, I spent a few weeks reading alot of threads. I don't know why, but it was very hard for me to make the decision as to whether I should sign up or nor not.
I have to admit that your threads are what inspired me to sign up here. You choose your words very well. You made me feel better about alot of problems which I was facing at the time.
I'm glad now that I am here, as I have met alot of wonderful people. So I have you to thank for that, so "thank you".
I hope that I can do the same for somebody out there. If anybody is reading these threads, and wonder whether they should sign up, JUST DO IT
You have nothing to lose, and everything to gain. Even with wonderful support at home, it is always nice to talk to someone, who knows exactley what your going through.

Have a great day, and thanks to everyone for making me feel so welcome.
Joaney

joaney
05-25-2009, 05:36 PM
Hey guys, me again.
Sorry, that funny little man laughing was not supposed to be there. I put a :, and a ) and when I posted the message, the little man was laughing at me. lol.
I think it's going to take me a little longer to work all these icons out. I did'nt realize that by writing something, your writing gets replaced by a little icons. LOL, This must sound really dumb to most of you, but I really don't know much about the way all this "new" stuff works.

bye for now
Joaney