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Long time no write.... Long time no write....

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Unread 04-29-2004, 10:49 AM
Howdy again...

I understand...I do. And I know that u guys understand too. My rage has subsided. I used to be VERY angry about the whole thing - at the time, that's what I needed. But I think God..or whomever is definately trying to tell me something. I'm at a point in my life where I'm needed by so many people - and frankly I need them too. I'm scared. No lies there. But I've been more scared of NOT knowing what was going on. Now that I know...at least I have a place to start...a point of view. Something I can stick on a medical dog-tag and have the ER take me SERIOUSLY rather than labelling me a 'nut job'. My offspring need me. My inlaws, parents, and friends need me. *I* need me...and I've been well..absent for a while. Laying around on your behind is NO fun..not in my book anyway. But that's all I've been able to do. Home fell by the wayside, parenthood fell by the wayside, friendships dwindled, finances crumbled, dreams died, hopes were ammended, and my priorities are definately CHANGED forever. The worst thing is...I pray, but I'm not sure I've worshipped as I should. I've been ill, but at some point reprioritizing things becomes a necessity and is not as easy as I would like... I'm down to: Do I bathe, play with my kid (cards, etc), eat, or go to church? Really...I know that sounds unbelieveable but that's where I've been. I don't hope for a cure - I hope to make thru the next five minutes with as much dignity as I can - and still hold on to what matters. Not my house. Not my job. My family....my life. The thing that makes me - me. I have gifts to share - I'm a writer for pete's sake. I put all that on hold to 'make a living' and now I'm down to 'getting by'. I'm still trying to make sense of it, but the big picture is - it doesn't make sense - not to me yet, and probably wont until I meet my maker. But I can try...and keep trying until there's no breath left in me. That's what I want people to help me pray for - to find some peace and a little cup of happiness that I can sip from to get thru the bad days and cherish on the good days....and...to find a way to use my gifts without killing myself in the process.
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Unread 04-29-2004, 10:59 AM

I have missed you so much S S

I am so very sorry to hear of everything you are dealing with...But it does sound like you have found some wonderful Dr's who want to help you to get better. I will most certainly keep you in my heart and prayers. I have often wondered how you have been doing. I've been in my little cocoon (you know what I mean) lately, for a long time actually...and don't post here much anymore. I do come by to check in, and read often though. I'm still on this road too...

This is a stupid question...But I'll ask it anyway...What is the Chemo for? Is it for Endo?

Does you employer have any sort of medical leave? Either short or LTD? I will continue to pray that you get better, and that you will find a way to get some support financially. Leaving my job /career of 12 + years was one of the hardest things I've had to let go of. I love/d my job, but there was no way I could keep working those long hours, constant stress etc. It was just too much for my body and mind to handle. I just know that you will find a way to concentrate on yourself (for a change). I'm here if you ever want to talk sweetie...

Please let us know how you are doing...and remember that there are many here that you...

xoxo Jude
Unread 04-29-2004, 03:11 PM
Auto Immune stuff

SLE (Lupus) and the other dx's is what the chemo is for...

Good to 'hear' from u!
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Unread 04-29-2004, 08:34 PM
Long time no write....

(((Angie)))) Just to read how hard things are for you makes me want to jump on a plain and just give you a great big

((((Sweetie)))) Maybe there is no reason? Some days, when things are hard, I just ask myself: why? Why are these things happenning to me? To my children? What message is God sending me? What does He expect from me? And then I think: maybe nothing? Maybe my job is just to get through this, to the best of my abilities? And to just be there, when I can, for my family I don't know: I know that I don't have all the answers... may I have none of them. I just hope and that you are conserving some of that energy just to allow your body to get the rest that it so badly needs

BTW, I don't think that we have to worship right, I just know that God is there for us. Sometimes, His answers are not the ones we expect, nor the ones we hoped for... but I've found out that there are always answers... and, so far, they've been for the best even though, often, it means that the road is little harder. So, I'm confident that He's hearing you. Look at all you've achieved just by finding this new doctor!!!!

((((Angie)))) All I know is that I'm sure that you're not meant to suffer like this. And I know that you hear the message. And I am so happy that the anger is gone.

Love you, ((((sweetie))).
Unread 04-30-2004, 06:50 AM

Just to clear up something - I'm not lamenting that God is 'doing' this to me because I've 'failed' as a worshiper. That's another thing about SLE - it DOES affect your mind - and body - and spirit...and I just can't get things out as elloquently or directly as I need to sometimes.

What I meant to say is this:

I think things DO happen for some reason - and we can take those things and make them positive or negative total experiences based on what we do with them.

I don't feel I've worshiped in a way that is beneficial to ME. I should have had my behind in church gathering strength - rather than lying in bed lamenting about my circumstances. Some days that's not possible, but on the days it is...that's what I should be doing. For ME. I've always had a strong faith in God. I've always tried to do the right thing. I don't think I'm being punished, but I do think sometimes we're 'pruned' in a way to make us take the right path. I think that's what this is for me...a time to decide what the right path is.

Just to give you an example - my offspring need me right now. There's crisis all over the place. Their grandfather is dying of liver cancer - he needs support but so do they - it's their first BIG loss. Then there's me. Now they know I have a disease that's not going to go away. That's loss too and they feel cheated. I feel cheated. I worked for so many years to give them THINGS when I should have been giving them ME. I regret that, but I'm not shattered by it. I just think it's time to reassess my priorities and make a new start (if I can).

I'm just at the point where I'm knocking my brains out trying to earn a decent living when I'm failing in a big way...all around. I cant work at the rate I need to. I can't be dependable anymore - I never know what days I can see, what days my right side will work, what days my mind will work, what days I can hold in bodily fluids and what days I'll be spewing like a fountain. Now the body blisters and ulcerations are starting....my body (maybe God, maybe not) is trying to tell me something...definately. That I need to CHANGE. I need to get a grip, change my priorities, and get a real life. Forget the money. Forget college for my kids, Forget cars, forget healthcare for that matter. It's not going to matter if I'm dead.

Somehow, I'm giong to have to find a way do do what I've never been able to do....trust in someone else to control my 'security' and my 'future' to a degree ... whether that be God (most probably) or family and friends (to a much lesser degree).

I'm not good at asking for help or accepting it. I'm just not. I'm going to have to get that way quickly or die in a final blast of energy trying to be self sufficient...which I cannot be anymore. Not right now.

Yesterday I spent a good deal of the night fiddling with my pc at home after working all day - I got up this morning screaming. Literally screaming in pain. I finally got that under control only to start my commute then go blind. When the sight came back (just a minute or two) I started to drive again - suddenly there was four of everything. It's not safe for OTHERS for me to be on the road now. It's just not.

I got the FMLA papers from work yesterday. I go next week to see my doctor. If I'm facing Chemo - I'm surely going to have to find a way to accept help graciously = and yes indeed beg for it if I need to.

that's the other thing - people are not used to me being needy. As my mother put it: You've never needed anything since you were three. As my grandmother put it - 'you were born an old soul'. Well this old soul is going to have to learn to be a burden. At least for a while...until I can learn to be semi self sufficient.

I can't fight for myself anymore. I can't deal with creditors, insurance companies, doctors, lawyers, or the average Joe on the street. This commando is out of commission.

That's what I meant - there's other uses for me. I just need to find them so I don't implode.

That's why I dont ask for prayers asking for me to get 'well'. I need prayers asking for me to learn to be weak - learn to be strong enough to be weak. Learn to accept and ask for help. Learn to find my place in this world in this new body - cuz that's what it is. It's new and changing every day - it's like having a shorted out electrical system for a brain and using a tv on the fritz for eyes and a car that is dropping parts left and right for a body.

I'm dealing...but slowly...and failing at so much.
Unread 04-30-2004, 10:43 AM
Long time no write....

Dear Anj,

I know that you have never been able to ask for help. I know that you are asking for it now. I know that everything is going to be okay - as long as you do stop working those crazy hours and concentrate on yourself for a change. Do ya hear me? I mean business here. It is TIME! You have to change your life in a radical way...so you can be there for your children - when you are able to be. You have always been the one to take care of all of those around you....STOP!

I will pray for you "asking for you to learn to be weak - learn to be strong enough to be weak. Learn to accept and ask for help." Because that is what you need to do for yourself right now. Perhaps that is one of the messages God is sending you...

I am sad that you are so sick right now - sorry, but I can't help feeling that way. You have been by my side for most of my journey of pain on this road. It is time for you to lean on others / us too...don't expect so much of yourself...and for that matter, tell those around you that you can no longer be the one to come to the rescue - that you are going to need the rescuing for a long while. They will understand, and 'they' will be there for you. So will He....

Sending you Love,

Unread 04-30-2004, 11:26 AM
Long time no write....

I know that everything is going to be okay - as long as you do stop working those crazy hours and concentrate on yourself for a change. Do ya hear me? I mean business here. It is TIME! You have to change your life in a radical way...so you can be there for your children - when you are able to be. You have always been the one to take care of all of those around you....STOP!
My Dearest friend, ((Angie)),
I agree with what ((Judy)) has shared above I know how hard it can be to do, accept that fate for fear of not being able to provide for your children, your family. When I was battling the same issues, someone help put it into perspective for me by saying, " You have to be here to provide & care for them, if you keep working at the rate you are, you wont." Harsh yes, but true...it really hit home & helped me do what I needed to do to ensure I would be here for them.
I was terrified, still am at the thot of not being able to provide for their needs, I'm all they have, but I know I must take care of me first before I can even begin to care for them. What would happen to them then or where they would go or become frightened me more than the other, it really forced me into doing what I knew in my heart that I must.
Just some thots ((Angie)) that really helped me....I'm here if you need me, for anything...pls dont hesitate to call

Big (((hugs))), lots of prayers & much love to you & the kiddos, my friend
Unread 04-30-2004, 01:01 PM

Kimmer,Dany,Sheri,Jude..all. I appreciate you all so much. And thanks to Kathy who created this safe place to weild our emotions and not hurt anyone.

There's alot I have to be thankful for. And if nothing else, this experience has taught me what crap-heads we can be when it comes to living in the moment. Now dont get me wrong, I'm not oprahfied just yet, but I'm coming around in a way that's taken this horrible thing to do. I see that I was meant for more than just creating 'business solutions'. In the grand scheme of things who gives crap? My last wish..my only wish is to give my kids a part of me they'll cherish and to find a way to live graciously...I've let go of all the anger. I really have. That helps, but then I had to turn around and go, "Ok, so NOW what's going to propel me thru life"? I'm not perpetually po'd so now what?

I'm not a self-pitier. but niether can I ask for help. I've never been comfortable letting someone else do something I was capable of doing for myself (or even if I wasn't). OK..I'm a control freak. I have to get over it. At the same time...I have to keep just enough to not be taken advantage of...and I have been taken advantage of recently. That was an eye opener.

Anyway - I digress

I had the 'talk' with the doc - my dh was there - I think that's the first time he's really taken any of this seriously. I really think he thought I was making much ado about nothing. I really do! But when she said the words, "Destress or die" and "You will have to make alot of adjustments if you intend to last" and "overlapping auto immune diseases that are eating your tissue" and the list goes on....right on down to chemo.... I saw a look on his face that I've never seen before. Superwoman was caught with her cape down. He had to drive me there. I cried the whole way there and at times screamed the pain was so bad. Then when she gave me some injections at the office - I had planned on going out and doing something while in Atlanta - but all I could do was go back to the hotel and sleep. I slept for 14 hours straight and even that wasnt enough. It never is. On the way home...there wasn't the usual whining from dh. Not the usual, would you...could you requests. I'm too pessimistic to imagine too much help from there but I must admit...It was a glimmer of hope that he might understand.

That's another thing...pray that God will reach him. Not for my sake, but for my kids. Pray that I can be strong enough to reach him...and my kids. And ...if it's not too much to ask, pray the fmla thing will go ok. I need it so badly - just for meds if nothing else. I have two crates of medical bills and it's still growing.

Now back to the thankful part -- I love you all. And appreciate you all so much.

Here's a lighter note:
Youngest asked why I couldn't go camping. I told him I had a 'tissue disease' he threw a bunch of kleenex on me and proudly announced, "Ok ..you're good to go".
Unread 04-30-2004, 02:43 PM
Long time no write....

Ya' know the best thing that happened to me was being laid off last April. While I knew I did eventually have to return to work, the destress time was great! Just when I really needed to I did find another job. While I don't make the money I used to, the stress and pressure is soooo much less. I have my little thing that I do and I do it well. I have days where there's not much to do and other days are busier, but I am not overwhelmed. For me, I now know that I can no longer do it all. And you know what? I don't want to!

I hope your dh will come around and truly understand. Over the last few years my dh has been great. It did take him awhile, I do think he thought I was just imagining it, but he now always asks how I am and if I need to rest. When I say I'm hurting and need to lay down, he no longer throws a little tantrum ranting that we don't do anything. Yeah, I think I will keep him.

Keep us posted on how you're doing Angie.
Unread 04-30-2004, 07:44 PM
Long time no write....

Oh (((Angie)))) reading your post about your day, yesterday, I understand why you're asking for help in asking for help. (((Sweetie)))) I know that it must be hard for Superwoman to give up her cape... but I think that the cape has fallen. Your body is definately telling you something... and so is your little guy (aren't kids great ?)

Asking for help is just about the hardest thing to do: I'm not a superwoman, but I'm straining to be as self-sufficiant as I can. And I just can't bare to ask for help. Asking for the services I'm entitled to, that's ok... but asking a friend, a neighbor, a family member, for a favor can be murder. Most of the time, I'll do without. Unless it means that my kids have to do without... and then I step all over my pride, and will do it... heart beating, tummy aching. Know what? The more I do it, the easier it gets I haven't done it often enough for it to be easy... but I'm trying.

((((Sweetie)))) I'm so happy that your DH is seeing the light... and realizes just how sick you are... and just how much you need him. Maybe you won't have to ask for help? He'll just offer?

I'm ing that you get the strength to be weak, because that's what's best for you and your family, that the FMLA thing works out and that things improve. My children have lost a few people they were close to in the past few years (my dad, an aunt who raised DH and helped raised my DS) and it's hard for the kids. But they will pull through: because they have you, but also because they have each other. Kids are amazing creatures!!!

And, ((((Sweetie)))), don't browbeat yourself too much about what's done: you've got a wonderful plan for the future and just concentrate by looking ahead. Believe, I know first hand about how hard it is to just let go of the past: I'm a pro at the "what if" game. But I'm learning, slowly, to stop doing that: I learn from my past, will do everything in my power not to repeat my errors, but will not dally on it. I'm not saying that you are, far from that. Just saying it, just in case you are.

BTW, I don't think it was your words that didn't come accross: my brain is mush, these days. I'm simply exhausted: My whole family has been down with the flu in the past few weeks, lots of stress with my DS (but things are better, right now) and lots of sleepless nights. It all adds up. Somedays, I find that I can't find my words when I talking... that's not like me at all!!! So, it can happen that I misread a post: when I'm tired, the ADHD and latent dyslexia kick in and that always means trouble.

All that matters is that you are doing the best for you. And, by the looks of this thread, you are. And you know that your sisters are here to help you through it.

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