View Full Version : tired of it all, and discouraged.
05-17-2009, 03:34 PM
I have been drealing with Systemic Lupus for 39 plus years now, and I am weary of it all. -- The years of pain. disappointments, altering my life style over and over, The loss of my nursing career(I was an RN), countless dispickable doctors, (there have been a few nice ones along the way), and thousands of medical tests. The cost for medications have been overwhelming, so has my medical insurance. I have had to undergo many serious surgeries, suffered, disabling strokes, lived through "4" blood clots to my lungs, put up with hundreds of painful bladder infections. I AM TIRED OF IT ALL!!
i am sorry I can't offer you newly diagnosed lupus people any encouragement this evening. The reality of Lupus is that you most likely will live a normal life span, but it is going to be a myerable, painful, challaging existance. Lupus will challange your inner character, and your determination to survive. You have to keep finding reason to laugh, because laughter will help you to feel better.
I have managed to do it for 39 years. You can do it too, if you have enough motivation.
Now, I ask God every night, to just let it end. In the beginning, when I was first diagnosed I asked God to please let me live long enough to raise my three year old little girl. She is now all grown up and attending college in the mid-west. My husband of 44 years is weary too, because of his own medical problems. My situation is just adding to his burdens. I have reached the age where I have very little quality of life, and the pain is still with me. Now on top of every thing else,I am showing symptoms of an underactive thyroid too. My health problems related to lupus just never seem to end, but in death, I will pass over to a new painless body. I am, looking forward to it.
You younger newly diagnosed Lupus people,have to keep on, keeping on, for the sake of those who love you.
With determination and perserverence you may live to be 70 years old too, and can say to yourself, "I have looked Lupus in the face, and I did good I am proud of myself. I am stronger than I ever thought I could be." Now, however, I am tired, and have earned a rest from, doctors, pain, and medications. Hopefully God will give me a reprieve until he calls me home. I haven't received that reprieve yet, but I am still hoping.Until then, with knee surgery staring me in the face, I give up. Wishing you all the very best.Tell someone you love them today, while you still can.
05-17-2009, 04:10 PM
Im sorry. I am not nearly as old nor as wise as you.
I was diagnosed 18months ago. It has been a hard 18months. There are days that I wish it could all end. I feel selfish for feeling that way. I still have kids Im raising. It just that it is tough raising them from my bed. I pray that the Lord will give you reprieve.
I've only been dealing with SLE for five years now, as well as an overlapping diagnosis of Multiple Sclerosis from only one year ago. I'm 41, but there are days it feels more like 81. You are right, living with Lupus can be a miserable, painful, and challenging existence.
I've read so many stories of loss here. Loss of a career, loss of a life's dream, loss of love and friends, and loss of life itself. For me, the loss of hope is probably the worst. There are many a long night where I feel all hope is gone. But then I have a good day, and get back a little bit of hope. That keeps me going despite it all.
Do you think that you still might have some good days like that ahead of you? I have nowhere near the life experience you have. I cannot truly know what it has been like for you. I just hope that maybe deep down you still believe there are still some good days ahead that are worth living for. I appreciate your candor, and honesty. It cannot have been easy to write all this. Things are dark for you now, but you could still have some good days left to look forward to. Please don't give up.
05-17-2009, 06:21 PM
I cannot say or even try to pretend to know what you have gone thru. All I can do is know what I have gone thru in just the 3 or so years since dx. I also get to the point of thinking...what is the use? But I am sure that there are people in your life that would want you to feel better and hope and pray for it. When I get down, I think of the people in my life and then get a little more kick in the seat to go on.
I am not that great now with words cause it is the end of a very trying weekend but I know that Rob, Noodlemom, and others have real good advice.
05-17-2009, 06:48 PM
I am just too......... tired of everything. Just not feeling good every day is not a good thing like have a permanent FLU. Pains, aches and all the blah.
05-17-2009, 07:13 PM
I am so sorry that you are where you are....wish we could all send enough energy your way to help you, but we can't....no one can help....time is in control.
My kids are also grown, and they keep reminding me that they want me to fight this thing. I have agreed, but have also reserved the right to call it quits, I get to make the call when i am through fighting.
I remind them almost daily, that when the time is right, i am going to the mountains, sit on the deck, and stay stoned all day....and then everything will pass, and i will be free to run with my grandchildren because i will be an angel. I am by no means talking about taking my own life, i am talking about taking my life back - no meds and no drs....i will be ready to let my body control my destiny.
There is a part of me that regrets dumping this on the new members, but you spoke the truth about our future, and we do promise the new members that we will educate them on all aspects of this beast that is trying to take over our bodies and our lives.
Preshad, i hope you can find tranquility and comfort. My heart goes out to you, and you know we are here to sit with you through the night if you need us.....just let someone know.
05-17-2009, 08:29 PM
We all can relate to how you are feeling! Always know that we are here for you. It's not easy fighting the pain of this disease, but we can all do it together!
05-17-2009, 11:09 PM
I know having knee surgery is very discouraging, any surgery is, whatever condition we are in...but it too will pass and you will recover when it is through.
Please find the strength and not be discouraged like the strength you wrote of in another post to RedHairAngel at this thread... http://forum.wehavelupus.com/showthread.php?t=5765
In my prayers you are. Praying can bring about a change within ourselves, courage, strength. Even though we may not get the miracle we hope and pray for, just praying fills us with hope...and that can change our whole outlook in that day...
I'm just wondering how you are doing today. Stop in and say hello if you get a chance.
05-18-2009, 02:13 PM
So sorry you are feeling the way you are Preshad.:no: I wish i could take this disease and chuck it out the window, cuz it DEFINATELY changes your life. I cant though so i figure ill do my best to enjoy the days that are pain fee and the days that arent , well it gives me an excuse to be lazy and read a good book or watch some of my favorite TV:cute: It can really get to me too, especially when i think of the MUCH MORE ACTIVE mom i USED to be. I DO what is within MY POWER to do, and whats not, well, if i want to cry that day then i allow myself to cry and then i look at my kids,my husband, out my window at the birds in my backyard, the trees, the grass, the flowers and the sky and i remember just how LUCKY i am to be here, pain or not. You are so right to let the people you love and care about know just how much they mean to you. Gentle Hugs to youXXXX
05-20-2009, 12:22 AM
I am so thankful for your post. It makes me feel lucky that I have only had to deal with my lupus for a year! You sound like a person with much strength. I hope that you receive comfort. Please know that I am thinking of you, I appreciate your thoughts, and I hope you find peace.
05-20-2009, 12:26 AM
Thinking of you, Preshad...head hugs..squueeze.
05-20-2009, 08:04 AM
i am also thinking of you and hoping that each day brings tranquility to your world.
05-20-2009, 08:10 PM
You are in my thoughts and my heart! Hope you are recovering well and know that we are all here for you! Sending you warm hugs!
Peace and Blessings
05-21-2009, 02:49 PM
If I could speak personally with you today, I would share with you my own story of hopelessness and the life it almost cost me. I could never presume to know your pain, nor would I tell you that you should not feel the way you feel. I would tell you, however, that in the grand design, you are so very special and unique. You are needed and loved by people you don't even know. Your purpose is being fulfilled as we speak. Your words here, albeit filled with sadness and suffering, have already touched the lives of so many, including me. You have called some to pray for you. Some have cried for you. Some have examined there own suffering and put it in perspective.
Please know that I am here for you. That we are here for you. That you are not alone. That as you suffer, so do we all suffer with you, for your pain is our own. Together, we draw strength from one another. Together, we carry one another. Today, we carry you.
With love and prayer for your well-being,
05-21-2009, 06:27 PM
Nicely said Jana:angelic:
05-22-2009, 01:58 AM
thanks jana....that was from you heart, and i hope preshad feels the love from us.
05-22-2009, 04:41 AM
Sending you gentle hugs and love...and yes...that post was lovely.
lots of love
05-22-2009, 07:39 AM
Wow, youre family is blessed to have such a wonderful caring angel in there midst! I just read your post, you have every right to feel the way you do. I pray for comfort for you and your family. As I read your post I actually had tears in my eyes. You bring to lite a harsh reality, I have been officially diagnosed for just over a year and my my rheumy also told me that I would live a normal life span, I assumed that he meant also normal. Prayers, gentle squeezes(that what me and my little girl do, lips & squeezes for kisses and hugs) thoughts of care and compassion and comfort. God bless, sincerly, Jim.
05-22-2009, 07:55 AM
preshad, My appologies on my last post, there goes my mind again, see one thing read another. I saw angels post and her name stuck in my head.
05-26-2009, 11:46 AM
Dont worry Jim! Boy do WE ALL DO THAT around here!!!! If anyones going to understand its all of us LUPIES!!!!!! LOL I know i have way TOO MANY of those moments!!! :wacko:
05-29-2009, 02:09 PM
I was crying the entire time I read that...being 19years old and only suffering from this for 5 years i totally understand. I have many times given into depression and thought about giving up. You are an amazing woman for being able to be strong and continue on and have a full life. Although life was not easy or painless for you you will be rewarded in the end. God bless you! I wish the best of luck to you and your husband.
06-01-2009, 01:44 PM
Oh please Katlyn dont EVER give up Hun! :no: You are STRONG and BEAUTIFUL, that doesnt sound like a quiter to me!!!! NOPE NOPE NOPE!!!!!:cute: