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Well, I'm not sure if I'm posting this in the right place, but I'm sure someone can move it if it's not.
My name is Patrick and I've been living in Hell since December 2009. In that month, my then-29-year-old-wife's intestines twisted up and sent her to the ER in bad shape. The reason for the twisting is long and complicated and currently in litigation, but maybe later, I can talk about that. Anyway, two-thirds of her intestines died and had to be removed in a very long, two-day surgery. She spent the holidays and most of 2010 in and out of the hospital (more in than out). The intestines they were able to save don't work great and are perpetually swollen and she constantly gets blockages. The latest treatment involves a j-tube in the intestines hooked up to suction to get the swelling to come down and maybe train them to work better. But in nearly two years, she's had two near-deaths and we are no closer to any recovery than we were in 2009.
At first, I could deal. We have two very small children and I have managed, with some help, to take care of them and eventually her. Meanwhile, our marriage has deteriorated into a caregiver/patient relationship and I fear it will never come back. I have to take her to two to five appointments every week when she's not in the hospital. She can take care of herself mostly while I'm at work, but I have to do everything around the house chore-wise. I was good for awhile, but recently, I started feeling so angry and bitter and lonely. I thought I should find a shrink or something. I thought I was a complete a-hole for having these feelings. I had no idea that many WS's felt this way. I can't talk to my friends because no matter what I say, I sound like a jerk because I have problems when my wife's problems are so much bigger than mine.
I'm not sure what I'm looking for here. Maybe just a place to vent to someone who understands...
(((((patrickd))))) This is HUGS for youand we give a lot of them.
I am so glad that you found our little WS family. It sounds like you have been struggling under a huge load caring for both IS and two small children. It is no wonder that you are feeling overwhelmed. Come here and vent often. We care and will offer all of the support that you can't find among "normal" people.
I am sorry that all of this has happened to you at such young age. It sounds like a long struggle ahead. We will help support you anytime.
FIS with inoperable lung cancer in remission over 7 years, COPD, on oxygen 24/7--14 years, 2 kinds of sleep apnea, spinal fusion--His struggle ended 10/21/2011
I'm sorry you have to be here but you've found the perfect place for your situation. Vent freely and often. I have found here what I've not found anywhere else during my years of WSdom.
IS Dx MS 1990 - stroke 2007- triplegic - spcatheter - eyesight problems - limited use of rht hand, some cognitive deficit
“You don't have a soul. You ARE a soul.
You have a body.”
― C. S. Lewis
Welcome to the family PatrickD! I'm glad you have found us, but very sad you need us. We are here to support you in any way we can! You have a tough life as a WS and we absolutely get it!!
WS (59) to IS (67) Separated. Parapelegic from injuries suffered in Viet Nam in 1967. PTSD, Chronic pain... too many surgeries to mention.
Welcome to our family.
Vent, yell, scream and let it all out. We do understand. Know that you are not alone it the way you feel and that you’re feeling are not bad. Know that it is normal for all of us to think at times we are " a-hole for having these feelings". You are not.
As you read what has been posted on this board you will understand that what you feel is "normal" for what you are going through.
So come on in, kick off your shoes and get comfortable with your new family.
WS-61 year old male. IS (65) Idiopathic Neuropathy, Rheumatoid Arthritis, degenerative bone disease, limited mobility, hypertension, carpal tunnel, Fibromyalgia, pain, always pain. Married for 33 years.
Welcome (((((((Patrick)))))))....I will go out on a limb here and say I think you will find what you are looking for here.......vent, commiserate, grieve, kick the wall or even share some joy.....this is the place to do it.......I am glad you found us & I am sorry for what you are going through at such a young age (it all stinks at any age), but still..........
IS-a massive stroke-6/07-hemiplegia rt.side, aphasia, diabetes, etc.-5 yrs.24/7 home care-now my darling is in NH...
Life is mainly froth & bubble-2 things stand as stone-kindness in another's trouble-courage in your own
Patrick, as others have said, so glad you found us. You'll figure out what you're looking for here because you'll suddenly realize you found it. It's about those who "get it" like no others in your life. We'll laugh with you, cry with you, give hugs, listen to you vent and offer what advice any of us can. It's a place of understanding like no other. Welcome.
IS with PTSD who is seeing a VA counselor. Good days, bad days and ugly days.
Hi Patrick, Your family has been through the wringer almost 2 years now. Everyone has a limit. This is a good place to let it out.
WS 55 IS 48 C3 Spinal Cord Injury 2008 fall from apple tree. Paralyzed below neck with trach. Many respiratory and some cognitive issues. Diabetes Type 1.
We definately understand all the feelings you talked about!
Feel free to come here any time, and vent whenever you need to!
Becky- WS: 35, multiple autoimmune issues, incl. hypothyroidism & gluten intolerance IS: 37, born w/ Spastic CP- legally blind & uses wheelchair; C7 vertebrae fused Aug 2007, cont'd back problems; Married since June 1998.
Glad to see you Patrick. I just joined the other day and it is a breath of fresh air to be able to read other people's stories and coping attempts. All in all I think you will gain much comfort and reassurance here. It seems to abound everywhere you look! Bravo to you for your strength and devotion to your family.
As you slide down the banister of life may the splinters never point the wrong way...Be who you are and say what you feel because those that matter don't mind and those that mind don't matter.
Hi Patrick, Good to meet you, so glad you found us...we surely do understand your feelings, even tho we each deal with our own IS issues, we all share many of the same feelings and emotions...looking forward to getting to know you....feel free to read away and comment when you feel moved to do so.....this is a very comefortable and caring place for you to have landed...once again welcome....
IS has TBI from MVA 2005
Patrick - thank you
What you describe (the pain, the sense of loss and frustration), are all valid human feelings
We adapt - but the sword hangs above our heads. Here you will find people that understand.
Together we can make it through.
I hope the new jtube helps.
Be thankful the thornbushes have roses!
Deb and Larry 4-16-67 1-22-13
President Well Spouse Association - BECOME A SUPPORTING MEMBER so that we can serve others in need
Welcome, Patrick! You've come to the right place! The people here are 'virtually' saving my life - (pun intended). M xxxx
I am a FWS. My FIS had bowel cancer with 25 metastasized tumours in both his lungs, but they were slow growing and not blocking any airways. He was first diagnosed in 2006, and died in June 2012.
Welcome to our community. I think you will find this to be a warm, understanding, and safe place ... A lot of caring support, good advice, and sense of humor to remind us that we can still smile.
Together 35 years, the early ones uncomplicated. Now, on a journey unanticipated. No map, indeed no clear destination, just finding our way.
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