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justcarla
12-05-2008, 03:47 AM
just needed it to come out of my mouth........i am at 6th stage and very tired of fighting.........none of my family realizes that I am so sick, so how do I make them realize? that I wont be here in 6 months?

KathyW1958
12-05-2008, 05:20 AM
Hi Carla,
Welcome to the site. My name is Kathy and I have SLE, Lupus and a host of other auto-immune disorders.

I feel sad by this post. What is happening that you think that you are dying? Is there anything that they can do to help you to get better?

I hope that you keep posting and I really want to get to know you. We all care for and about you.

Hugs,
Kathy

mountaindreamer
12-05-2008, 05:47 AM
Hi Carla,

I am a new member to this forum, and I am awed by the kindness and knowledge within this group of wonderful people who fight this horrible disease. I hope you will keep posting, and absorb the compassion and support sent out by everyone.

I am so sorry about your family. Sometimes our loved ones are the last to come on board, because they are not forced to learn as much about the disease as we are.

I hope you can get guidance that opens other doors,
Phyllis

justcarla
12-05-2008, 07:21 AM
doctor gave me 14-18 months 2 1/2 years ago....I packed 2 suitcases and left my entire family cause I did not want this on their shoulders...plus the stress was making me sicker everyday. Well I was doing wonderfully, never sick in fact for most of these last 2 years, full of energy and even lost 72 pounds. So that proved that the family stress was alot of my speeding demise. Well now I have a pseudo family here in Vegas (I am a caregiver and pick up all strays) They are a needy bunch.....hehehehehe. But it is getting harder and harder to get out of bed, my hips hurt constantly, my hair is falling out and my kidneys are not filtering.

I can't keep packing and moving I love it here and none of these people (3 of them) understand Lupus to realize how sick I am (3 hospital stays last month)

sits_inthe_corner
12-05-2008, 10:03 AM
Hugs to you justcarla and welcome,

What medications are you on?

I lost my mother to lupus, I had no idea that she even it. It left a huge hole in my life, full of longing to be able to go back and redo....but we all know you don't get do overs.

Now is a time to hold those you love close to your heart. Reach out to them and let them know you love them. Non of us knows for sure what life it going to hold for us.

I'm sorry you are hurting so badly.

Please keep posting and seeking relief from your doctor's. Don't let them write you off. I hear how tired you are. Lupus is cruel but also unpredictable.

Danica01
12-06-2008, 05:57 PM
Hi Carla! My name is Danica and I am new here. I have to tell you that just in the few responses I have already received, I am filled with love and support. Please keep talking to all of us. We may not know what you are personally going through but we can relate in the overall feeling of being sick. Keep your head up and know that there is always someone here who will talk to you and listen. I am sending you a big hug right now! :B-fly:

You are not alone and never will be!

Jesse
12-07-2008, 02:50 PM
Carla, you are obviously so tired of dealing with your health issues, but don't give up! You may think you're family doesn't understand, and perhaps you're right, but they will be DEVASTATED if you give up. Please be strong for them, if not yourself. Are your kidneys the reason you believe you're dying? Can you get on a transplant list? Isn't there anything the doctors can do for you? The fact that you've already proven them wrong about your prognosis makes me think you are stronger than they realize. But you need rest and relief too. Give yourself a break as often as you can. Be good to yourself. Treat yourself to something you really want. Take care of YOU.

And post to us any time you can. We want to know how you're doing. You've just been added to our family so now you have to keep us posted, OK?

Saysusie
12-07-2008, 07:55 PM
Hi Carla;
I am Saysusie, the moderator/administrator of WeHaveLupus. Reading your posts made my heart ache. I can truly understand how you must be so tired of being sick, and so tired of having people doubt your illness, and so tired of their lack of understanding.
I just want to tell you that, even though you may feel like it, you are not alone. There is not one single person here who does not understand, there is not one single person here who doubts you, and there is not one single person here who does not totally believe that your symptoms are real. Other WHL members have given you support, offered suggestions, and opened their arms to welcome you. That is what you can always expect to find here.
I see that you've been asked about medications, possible transplantation, and maintaining the will to fight and to live. There are medications that can stop the damage to your kidneys and, hopefully, reverse that damage. Many members here are taking some of those medications.
The hair loss is, unfortunately, a common side effect of Lupus. For most of us, however, the hair eventually re-grew when our lupus was treated and the symptoms became manageable. For EVERY symptom that we suffer with from Lupus, there is a treatment and/or medication to deal with that symptom. Let us help you to learn as much as you can about those symptoms and their treatments/medications. With knowledge, you can become an advocate for your own health and you will have much more power and understanding to help you to manage your lupus.
Please let us know what medications you are taking so that we can offer you advice and information about other medications that might be available to you.
You are absolutely correct about the correlation between stress and symptomology. Doing all that you can to avoid stress is one of the most important aspects of managing this disease. However, I have to agree that you cannot keep packing your bags and leaving. It might be helpful to educate your pseudo-family about your lupus at that same time that you are educating yourself. You might be surprised at how accommodating, supportive, and understanding they will be if they only knew the facts about what you are going through. There is an article that we refer to often and that we suggest to many. It is called "The Spoon Theory". Many of us have given this article to our friends and family in an effort to help them understand what we have to deal with on a daily basis. Here is the link: www.butyoudontlooksick.com
Perhaps, after reading this, you can have a conversation with them that is beneficial to all of you and you can continue to educate them and yourself.
In the meantime, please believe that you have a family here and we want only to help you in any way that we can, for as much as and as long as you need us.

Peace and Blessings
Saysusie

Danica01
12-10-2008, 05:07 PM
Hi Carla! I stop in and check here everyday to see if you have responded. I am just checking on you to see how you are feeling and handling things this week. :angel:

I am sending you lots of love and soft hugs!

Danica

mountaindreamer
12-10-2008, 07:04 PM
Hi Carla,

I too, check to see if you are posting. I think of you and hope you are ok.

You have friends,

rob
12-16-2008, 10:56 PM
Hey there Justcarla,

I'm Rob, and I was diagnosed with Lupus five years ago. I'm 40 years old. I moonlight as a moderator here, and I try to keep up with each new member, just to say hello and welcome. Brain fog has made me a bit off kilter and I did not see your post until just tonight. This disease, is indeed terrible. I just wanted to tell you that you are not alone. Many of us, lose hope, some more than others. For you to come here and introduce yourself, and reach out to others with this disease, tells me that you still have hope somewhere buried underneath all of the hurt. I hope you are OK. If you are able to, and you happen to read this, please come back and say hello. You are always welcome here.

Rob

Angel Oliver
12-17-2008, 05:50 AM
Hi justcarla,

I am new to this site and just want to let you know we are here for you and will support you all the way. You are not alone!! I hope you are ok. Please come back and post.......one of us if not all of us may be able to help in some small way.

Love
Angel.xxx