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Macv"For me, MDjunction has been a place where I can share my experiences
living with the very rare bone disease called Ollier's ( Enchondromatosis ) with the parents of children recently diagnosed. I can help them not to run
into the pitfalls my parents did when I was young, give them a bit of a view
from their child's perspective and simply be there to offer support and
hope to people who are scared and just had their lives upended. I also belong to a chronic pain group and it's been a Godsend to be able to actually
talk with others who understand what I'm dealing with. Besides them helping me through my tough times, I can be there to help them as well. Here too, I can use my years of experience to help others avoid pitfalls and it makes me feel good, gives my life more purpose. MDjunction brings people
together when their suffering, at their darkest and feeling alone in this world and allows some light to be brought back into their lives. HOPE, that's what
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Linda aka Macv
" (Macv)

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Lupus ForumsGeneral & SupportThree months without the love of my life
10/27/2009 11:29 PM
manuelgvs
manuelgvs
 
Posts: 31
Member

Today marks the three month mark that my wife died of complications brought forth by Lupus.

I haven't been posting as much as I did when she just died but the stress, anguish and pain remains the same.

She was the love of my life. My one and only everything. Sometimes when I am at work I grab my little journal book and write down my thoughts in an attempt to relieve my sadness and pain. It helps for a little while but the depression always creeps back in.

Today I made another step by disposing of some of my wife's lupus medications. The pain killers, the steroids and anti-inflammatory medications have all been flushed down, to ensure no one can ever get their hands on them. It was rough, she had become so dependent on her medications to sustain her life, and to manage her terrible pain. Oh, how I hate Lupus for destroying our life.

Her clothes and shoes remain. Untouched and in the same place, ready for her to wear. I keep her eye glasses neat and clean on the bathroom sink counter. I wipe them often, ensuring that the lenses are impeccable and sparkling clear. I am not sure if I am simply hurting myself or whether I am still deep in denial even after three full months...

I have joined various Lupus foundation causes online and still feel strongly for everyone who suffers from this terrible disease. I feel your pain, I know your struggles and how much it prevents you from enjoying the little things in life most people take for granted.

My wife took life one day at a time. Some days were good, most were bad. We enjoyed the good days, often by shopping and going to movies, a mere few weeks before she died, safely in my arms.

It'll never be back to normal for me and our son. I am missing an irreplaceable part of my life. I have managed the pain and sadness, letting it overwhelm me at times as a reminder what had happened. I really don't know if I am doing the right thing by constantly reminding me of the loss.

This month and the next would have been our special 16-year anniversary months. We went on our first date on October 22nd, 1993. I told her I loved her on November 21, 1993. It marked the start of an amazing relationship and marriage... But never would I have thought on March 23, 1996 when we said our vows in front of God, "until death do us part" would come this fast. Our story wasn't supposed to end like this.

All I can do now... is to raise our little boy. Share all my wonderful memories I have of his mom with him when grows older. Tell him what an amazing mother and wife she was. Tell him how valiantly she fought against her horrible disease, never letting it keep her down. And hopefully he too will know how much she meant to me. He too will know that she was the love of my life.

Lucia, I miss you so much.

http://www.youtube.com/watch?v=1eVd-EE0omk

http://www.luciavansanten.com

http://www.micahgideon.com

"We keep assuming that tomorrow is something more than a wish. We walk around as if we have some piece of paper that guarantees us tomorrow. Never put off 'til tomorrow what you can do today." Harold Ivan Smith
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10/28/2009 01:31 AM  Top
Supersal
Posts: 36
Member

Hi there,

My heart breaks for you, I am so sorry that things are so tough, and they probably will be for some time. don't beat yourself up over getting down and depressed about it, you have every right to be. Everyone grieves in their own ways and your way is perfectly normal. When you feel really bad, just look to your son, hold him tight and know that part of her will always be with you, growing in him. I wish I has something to say that could make you feel better, but I am not sure if I do, other than we are all here for you when you need us an if you ever feel that life is just too much, just look at your boy. I know when I feel bad an I am having a "bad day", I look to my kids and thank God they are here, they seem to take the edge of even the worst feelings one can have. I hope you find peace, even if it is just a little. Thinking of you and praying for you and your son.

Sally


Previous discussions I participated in:
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Seeking DX
Just diagnosed...

10/28/2009 02:29 AM  Top
Looopie
Posts: 1865
Senior Member

Hi. I am very sorry to hear of the passing of your dear wife, and would like to offer my condolence for your loss. People say your loved ones never go away but live on in the people that you love the most, your son. I am sure Lucia is watching over you and your son. I pray for you and your son, and hope that you will find peace, even in grief.

Marie


10/28/2009 09:43 AM  Top
KSteacher
Posts: 156
Member

My heart breaks for you too and I hope you will give yourself the time and space to grieve in your own way. There is no timetable on when you should be doing certain things or feeling certain ways.

I'm glad you've come to us for support.


10/28/2009 01:06 PM  Top
redhairali
redhairali
 
Posts: 3398
Group Leader

Welcome back. My thoughts are with you. You will know when it is time to look forward instead of back. Just be there for your son.

Alison


Previous discussions I participated in:
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Lost & Frustrated

10/28/2009 01:46 PM  Top
mumeva
mumeva
 
Posts: 5493
Group Leader
I'm an Advocate

This was so beautifully written it brought tears to my eyes. Everyone has their own way of grieving and for you its writing in a journal or coming on the support site. Were all here for you anytime you need us....take care my friend and hold your son tight.

Eva

I long to dwell in your tent forever and take refuge under the shelter of your wings: Psalms 61:4

Previous discussions I participated in:
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PLEASE I FEEL SO CONFUSED

10/28/2009 02:02 PM  Top
breezyhope
breezyhope
 
Posts: 596
Member

god bless you and your little boy. i just watched remembering lucia on youtube - what a beautiful tribute in memory of lucia!

Previous discussions I participated in:
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10/28/2009 05:45 PM  Top
heidiclouser
 
Posts: 1036
Member

What a lovely tribute to your wife. Take care of yourself and your son. I hope you'll come back here often for support. We are here for you.

10/28/2009 11:11 PM  Top
Bunnyhugger75
Bunnyhugger75
 
Posts: 2019
Senior Member

A beautiful story of your wife and how you honor her memory today. My heart goes out to you. We are always here for you to talk to.

With peace,

Amy

Diagnosed with Lupus in 2002. 36 yr old On: Plaquenil 2x a day, Cellcept 500mg 2x a day,Lasix 40mg 1xday, Prednisone 9 mg, Folic Acid 1mg, Vit D, Prilosec, Effexor 50mg 2x a day, Ativan 4 mg a day, DHEA, Methadone 2xday, Dilaudid 4mg, compazine, Imitrex, Doxepin,phenegran all as needed (prn).

Other diseases: Adrenal Insufficiency, Endometriosis, Crohn's Disease, Gastritis, Postherpetic Neuralgia, Raynauds, Sjogrens, chronic anemia, costochondritis, fibromyalgia.

Previous discussions I participated in:
New to the group
Lost
Denied

10/29/2009 11:48 PM  Top
stillhopeful
stillhopeful
 
Posts: 4723
VIP Member
I'm an Advocate

What an awesome tribute to your wife. I lost a cousin to lupus, she was my best friend and it has been almost 8 years now. My heart still aches for her. I can't imagine losing my wife/husband.

It is obvious that you were a wonderful supportive husband. God Bless you for that.

Hold on to your son, for he is part of the two of you together, you and your wife.

Please come often and visit. My heart goes out to you and I want you to know we are here for you.

Thoughts and Prayers are with you and your family.

Christine

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Christine

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am not a doctor, but I sure do make a lot of visits to them. Any information discussed with you, is just my personal experience or information givn to me. I am not your doctor, please call him/her if you are having problems.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
When you get to the end of your rope, tie a knot in iit and hold on tightly. You will get through your problems, because we are all here for you.
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