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I'm in a dark dark hole

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Posted Yesterday 10:55 PM (GMT 0)
I battle every day to try to find a reason to keep fighting. I really don't feel very upbeat about a transplant. I'm going after the first of the year to see the TP team. Even then chances aren't that good. What's really got me stuck and please don't think I'm crazy is I don't mind dying. I just want my life to have meant somthing. I find myself thinking of things that this battered body can still do to make a difference in someones life. I wouldn't commit suicide because that just isn't me. But I have absolutely 100% peace in letting go. I just want it to mean somthing ya know? I've seen people go into the hospital and lay there to breath their last breath. That is not me. I have no plans of going out that way. I guess these are feeling most people have in this situation. I'm not sure. I know I have been praying about it so I know what I can do to make a difference. Anyway that's why I havn't been around much. I just don't have anything to offer right now and  christmas time is not the time to be a bummer to everyone.

you guys take care

love you

carol

Posted Today 12:20 AM (GMT 0)
Carol, I just sent you a private email.  I wish I could give you a REAL hug right now, hold your hand, and pray with you.  Then make us some tea and we can watch a chick-flick and have a good laugh.

 

Love

Ginny

Posted Today 8:40 AM (GMT 0)
Hi Carol,
I’m sorry to here how you are feeling. Every new page of our lives is the beginning of a new story. I’m very sure if you asked the people around you they would say how much you mean to them. I’ve read some of your posts and I can tell you that you DO make a difference. I find myself having to learn how to take assistance from people where I used to be the one that did the assisting. I’ve been standing up for all those that can’t stand up for themselves for as long as I can remember. I’m just no longer able to do it anymore. Thus the page has turned and it’s time to find my new calling. My infliction will only make me stronger as I’m sure it will for you.

Take care.
Posted Today 2:31 PM (GMT 0)
((((Oh Sweetie)))) I know how very much you mean to me and you make a difference in all our lives. I know that my telling you is not enough. You want to see something tangible, something concrete that will prove you've made a difference. Most often the difference people make is not something easily seen. It's the kindness they have given others with a smile and gentle touch. The funny things that made them laugh when they needed it most. It's the effect made in other people's lives that most people leave behind. Every simple gesture you made to someone (or even an animal) encourages them to also be kind and so it goes. I think it's one of the greatest things humans do. You will leave so much more than you can even imagine. I've never met you, but you've done so much for me and I love you Carol. I hope you are able to crawl out of this hole and smile again soon. Love, Donna     
Posted Today 6:46 PM (GMT 0)
Okie,
I love you. We would keep you around forever, but that would be selfish. Rest assured you have made a tremendous difference in the lives of so many. It's such a blessing that you have that kind of peace, but God may just not be finished with you yet! Love ya, Judy
Posted Today 8:29 PM (GMT 0)
you have made a difference in my life and I would be poorer for not having known you. Your presence here makes a huge impact and I hate to see anyone who makes such a difference die. There are many people out there who do nothing to affect the lives of others positively whose loss would be no big deal in the long view of things but you make a huge difference and the world will be a darker place when eventually you leave it.
Posted 12/2/2008 12:31 AM (GMT 0)
cry Carol, It's hard to know what to say to a friend who is as low as you are, especially never having walked in your shoes. I'd like to tell you that you have lots of friends who care about you, to tell you to live every day as though it were your last, which we should all do, what a hole you would leave here at HW if something were to happen to you, but somehow I don't think that will pull you out of your depression. Have you talked to your doctor about this? He could prescribe an anti-depressant that's stronger than what you're taking now. But most of all, I'd ask him to suggest someone for you to talk to. I can't imagine that a doctor would suggest a lung transplant without having his patient get some kind of counseling first. Do you have a minister (not your brother!) that you could talk to? I feel so helpless, Carol, but want you to get some relief from your pain.

Do let us know what we can do to help you, and DON'T stay away just because it's the holidays. You need to be more connected, not less, with your friends as the holidays approach. You always help folks so much, so please ask for what you need, and let us be there for you.

You're special, Carol.

(((((Gentle Hugs))))))

Pat
Posted 12/2/2008 1:33 AM (GMT 0)

I just want to give each one of you and HUGE hug!! You guys are so kind and such good friends to me. It's strange to feel so close to someone that you have never met. I've had the fortunate experience of running accrossed some of you that call me on the phone to see how I'm doing. My family doesn't even do that! redface .

Yesterday morning was really bad for me but last night was a lot better. I'm sure in no small part to all of your prayers and possitive thoughts and your kind words to me. I must admit I do feel really guilty when I don't come here every day and try to be of some help. It leaves me feeling kind of empty.

Patty (not your brother) lol. sorry but I had to laugh. I am beginning to think that the provigil is causing me some problems. It does say side effects can cause suicidal thoughts or actions. I know a lot of meds say that. they have never bothered me but ya never know. Between the holidys and health and everything else those meds just might have tipped the scales. I took a half of one this morning I'm gonna try that for a week or so and see if I notice a difference.

Bigbry, hey we have never met even online have we? my brain doesn't retain alot but I just wanted to say welcome to the group and thank you so much for your suppport. I look forward to getting to know you.

Ginny I sent you and email back a little while ago. Thank you so much for the email I really appreciate the offer. God loves ya and so do I.

Redrose, thank you so much for responding. You are so sweet. The feeling is mutual. After all not everyone will let you go through their pregnancy with them! Do you realize how many adopted aunts and uncle that son of yours has? Give him a hug for me!

Judy, I love you too. You do have a way with words. If God has  plan I sure wish he'd let me in on it. I'm sure most of us wish we knew what the future held.

((((((Donna)))), you're such a sweet heart. But I have to say that one of the 5 dogs bit the kitten this morning and I wacked him one. I don't think he felt the love lol. I'm climbing out of the hole with all the support you guys are giving me. Your post had me in tears. Some times tears are a good thing.

Thanks again everyone. I love you all. No matter what happens or when it happens you are all a gift to me.

love you

carol

Posted 12/2/2008 3:04 AM (GMT 0)
*stands behind Carol walking up the ladder and out of the hole together* Hot tea and prayers for you sis. Sorry you are having such a hard time. I'm glad things are a little better today. It is miserable at the bottom of the hole! I'm glad you've found the ladder that everyone extended down to you sis! Blessings!
Posted 12/2/2008 1:42 PM (GMT 0)
*Donna kicks the dog with Carol* LOL

Posted 12/3/2008 3:25 AM (GMT 0)
(((((( Carol ))))) you are a wonderful person and you do have a purpose in this life! You are so helpful and encouraging here, you help so many people, including me! Please don't give up, just live life every day to the fullest, no one is promised tomorrow. I know holidays are hard, my grandma use to get down around this time of year too, just remember you have lots of people here who love you and look forward to corresponding with you! Take care sis, love ya!
Posted 12/4/2008 6:54 PM (GMT 0)

Late get this to you Carol.  I tend to think like one other has done.  When I went to the cancer center for radiation treatments, one of the first things that the did was to assign me to a social worker, in the building where I got the radiation treatment.

Okie.  sometimes i forget your name;)  I cannot think anyone can be in better than you are when you respond to this forum, and to those who are better for hearing your words.

Hope this day will be for you than it was yesterday.

Hester

Posted 12/5/2008 4:10 AM (GMT 0)
Carol,
So sorry I missed this, I have been having "issues" to put it mildly on all fronts. I have been low lately too, feel like giving up and sometimes I get really tired and just want to let go and it scared the heck out of me, because I just didn't care if I lived or died, I felt so "relaxed" (worn out from fighting) and just feel like giving up.

And I finally told my friend, I was so sick, and she said, "Marji, don't worry about that! That's the 'peace that passes all understanding'." Now that sounded like a bad date to me! But after I stopped giggling from my own demented sense of humor, she said, "go with it, go for it, it's not giving up, its resting and you have a right to rest." It's true. We do have a right to rest and not "fight" all the time. We have the right to peace, and "giving things to God" and the doctors for a while. She said, "you know, that's God's (or you can substitute nature) way of giving you a break, you wear yourself out fighting and then just finally give it up to God, fate, whatever. And healing happens then too. Because we do need the break.

That's how I knew I was really sick, I told myself--not true. Like mst modern working women with family I was just too much of a control freak to let go under any other circumstances until I'd worked myself and body into a "must rest" situation.

So when I get really sick, which is like never now, unless I get friggin' pneumonia again, or keep driving like an idiot and end up in the hospital, if I get that feeling, I have this nice comfy feeling that I don't need to be afraid anymore, that giving up for now to rest is not giving up forever, and that its a nice comfy place to be to give it to God, to not be in control all the time (or try to be) to relinquish control for a while. It's hard for non-sick people to do. But it is where all the Buddhist monks and spiritual esthetes and monks and very very faithful visit, so you are in good company. I usually go there when my son drives me around.

You sound better! I wish I was there for you ssoner and hope you get some good "peace" and rest and can take your mind off things for a while. You got yourself there and you are doing what they need you to do. And they will tell you when to fight. You are a loving person and your life has been full of love and meaning too, BTW. You've helped me a ton. But you deserve to not worry and give yourself a rest, a spa break once in a while, even if it's not under the most pleasant circumstances, I look at it that way, a chanceto shed cares for a while and rest and heal. It is a weird phenomenon and frightening definitely sometimes.

Love to you and know I'm praying for you and hope you get good rest, Marji
Posted 12/5/2008 3:47 PM (GMT 0)

Your post helped me too Marji.  Yesterday was such a good day.  cleaned three of the rooms in my house.  felt so good physically and mentally.  wanted to keep cleaning as much as I could because what might show up.  and sure enough diarrhea paid me a visit again.  first thing this morning.  So cannot go pay the bills, get gas in the car, etc.  At least I bought groceries yesterday.

I do not know if I need to push it, or take many breaks as I worked yesterday.  And I did take breaks, but apparently not enough.  For here it is again this day of explosive diarrhea.  and found myself depressed at bedtime last night.  Like someone pushed a button and the good day was gone.  there was nothing that caused me to be depressed.  It is more like a physical response.  and still I wonder if Lupus has more physical effect than may not be known.  I wonder if the depression is not because or our reponse to Lupus.  Rather Lupus causes us to be physically and mental depressed. 

Lesions on the brain, is a physical response to the body, and what kind of response does the body make to these lesions?  don't know.  do they know?

But here it is.  One really good day yesterday, and today depression determines what my life will be today any many tomorrows maybe.  But at least I had this day.  the house is clean, mostly.  and will go back to my rest 15 minutes, and work 5 minutes.  and get the laundry done at least.  can't drive anywhere.  Have to stay close to the bathroom.

Thank you Carol for sending your message to us, and thank you for Marji for responding to Carol.

Hester

Posted 12/6/2008 5:13 AM (GMT 0)
Your welcome Hester and you are so sweet. My friend helped me so so much, and I learned, also with my grandma's illness, that weneed to let things go sometims and rest and just kinda say "whatever". Today, I struggled with that. I can't control my illlness, at least not consciously, but I can conrol how I respond to it. My body, like yours, seems to have a mind of its own. I have the same problem you do with the diarrhea, explosive sometimes, and it made working unbearable. It is depressing too. I hope you are getting enough fluids because of that because we get so dehydrated. I don't know what your doc recommends, mine says some water, some gatorade though too because I drink distilled water with no electolytes.

Take care and I will be praying you have more good days and things stabilize and at least become more predictable. Sometimes I think that is the worst part of this.
Posted 12/6/2008 2:16 PM (GMT 0)

Your prayers must have worked Marji.  Woke up today with a better thinking mind.  Lupus fog brain less intrusive.  more capable to think.  So many of you have fog brain.  Why I didn't or couldn't have associated this with Lupus.  I have a mental disorder called Dissociative Identity Disorder, and always the doctors believe that the depression I experience is normal for DID.  Having bad mental days is associated with the disorder, and I am not so sure now.  Sadness, or some other thing affecting me caused depression some times.  and that part I understand, but not the depression and mental cycles that I experience with Lupus.  This depression that I associate now with Lupus does not respond to antidepression meds.  and the depression that I accompany with the mental incapacity doesn't make sense.  I am confusing my own self.

But even in the midst of this brain fog due to Lupus, I can understand.  and as you said, I do not have the control over Lupus, and what it does to me, but I can control my response to it.

Just had that one day of diarrhea yesterday.  It seems to be gone today, and motivation is returning.

I need to tell my youngest daughter to drink more gatorade.  she drinks bottled water all day, and she walks regularly for miles at a time.  she needs the electrolytes as I do.  I found quarts of gatorade the other day at the grocery store for a dollar each.  I do feel better too for drinking all of them.  can't afford them all the time, but sometimes.

Each day that I visit this forum, and read the problems that other people have had, each day is an education for me.  Each day I am helped here.  and helping other people also does a good thing.  When I speak to people about resting and letting things go, it also gives me permission to allow myself to let things go.

This Lupus forum is a win, win situation.

many thanks Marji.  Many many thanks.

Hester

Posted 12/6/2008 4:13 PM (GMT 0)
They make a huge canister of powdered Gatorade that you mix up yourself -- it's the least expensive way to get Gatorade!
Posted 12/6/2008 5:14 PM (GMT 0)
Ya, my hubby uses the Gatorade mixture.  WAY cheaper.

 

Carol, how are you today?  We're all thinking of you and praying for you.  I hope today finds you at more peace.  We look forward to hearing from you soon.  When you can.

 

Lots of love

Ginny

Posted 12/6/2008 6:55 PM (GMT 0)

I will have to get some of the canister of Gatorade to fix like koolaid I am guessing.  I am also going to get some homemade remedy for heart burn.  Baking Soda, called sodie power by us southern ladies;)

Hester

Posted 12/9/2008 9:12 PM (GMT 0)
Carol, I know I'm catching the tail end of this topic, but I can confidently say that I bet you have made a difference in the life of every person you have gotten to know. You are a warm, kind, compassionate, wonderful person with an amazing sense of humor. I know for a fact that you have made a big difference for people on the forum. You are there for others even when you are so sick and we are more than glad to be there for you. I struggle with the whole meaning thing too. You are always in my thoughts and prayers. Lots of love and hugs to you.
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