How to get a family to understand.

[ridgefire]

Let me tell my story so everyone understands where I'm coming from.

I used to be 380 lbs I had uncontrolled diabetes, sleep apnea, severe hip and back pain, I couldn't walk more than 10 minutes at a time before being winded and in pain. I had several more medical problems and a pharmacy full of medicines I had to take everyday.

January 2008 I had gastric by pass done. My family totally supported me in this endevor. I have had problems ever since. Shortly after surgery I had cronic pain in the abdomin area.

November 2008 they removed my gall bladder. I was fine for awhile, I was still having chronic pain, they did an endoscope and found an ulcer. They put me on medicine for this ulcer I took the medicine as prescribed and they ended up doing another endoscope on me. Found that the ulcer had healed over. Things were looking up for me.

A few more months go by I have been dropping weight like crazy, my doctor is getting worried I'm losing too much too fast, I still have chronic pain and now I cant eat without getting sick to my stomach. So they do yet another endoscope and find I have three active ulcers now. Now my doctor is dumbfounded that my body is attacking itself like this, he has never seen a case like mine before.
They put me back on the ulcer medicine. I still have chronic pain in the abdomen I end up going to the ER a few times for pain control.

June 2009 I was sitting at home just relaxing when all of the sudden it felt as though someone was stabbing me in the gut. My wife is at work (she just happens to work at the ER) I give her a call tell her about the pain, she asks me if I want her to leave work and come get me. I tell her no I can wait for her to get home at her regular time which is in a couple hours. I end up calling in to work for the night shift due to the pain. Meanwhile the pain is getting constantly worse by the minute. So I decide I will drive myself to the ER, I made it to my car before I collapsed. Luckily I had my cell phone on me. I call my work (which just happens to be 911) I tell them I need an ambulance. I wait for what feels like an eternity. The ambulance arrives and loads me up, they start the IV and do all the paramedic things to me. Still in terrible pain. I get to the ER the doctor comes in right away and orders Diluted for the pain, 1st round nothing still not helping, he orders a 2nd round, nothing no relief, 3rd round still no relief, he now orders morphine, round 1 nothing I am now still up in the bed screaming in pain, you would have thought I was giving birth. Round 2 of morphine no relief, he now orders Valium. After that I am sedated and don't really remember a whole lot. Apparently I quit breathing on them. They start to breath for me, the doctor told my wife he is willing to intubate me if that's what it takes to control the pain. Luckily I end up breathing on my own and I was still moaning in pain. Its now around midnight and the surgeon arrives in the ER and orders me to OR stat. I guess according to the Surgeon the only way they controlled my pain is when the anesthesiologist put me under for surgery. I spend the next 3 hours in surgery.
I wake up the next morning with a incision from just under my belly button all the way up to just under my rib cage. 24 staples. The surgeon comes in and tells me what happened was all of my small intestines herniaed up into my diaphram he said when he cut me open he didnt know where to begin it was such a mess. I spend the next 3 days in the hospital and 2 weeks at home healing.

I get back to work and things seem normal all my pain I have been having is gone I can eat again. I finally think things are going to be back to normal.

August 2009 My wife and I are on a road trip down to Grand Rapids, MI. We stop in Grayling, MI to have lunch with her friends. Still no problems. We get back on the road, I start feeling a bit queasy, I am having severe cramping in my stomach. I feel like I have a huge belch that I just cant burp out. We make it as far as Cadilliac, MI, by this time I am bouncing in my seat in severe pain again. We see signs for a hospital and head to it. We get checked into the ER, they get me right back because of the distress I'm in. Once again the doctor orders Dilated for the pain and nothing happens. They pretty much do the same thing my ER did Dilated,
Morphine they didnt make it to the Valium though. My blood pressure dropped to 50/30 and I crashed from there. My wife was escorted out of the room so I cant tell you what happened from there, she did say it wasn't long after that the ambulance arrived to transfer me to Munson Hospital in Traverse City, MI I do remember hearing the paramedic tell the driver to light it up and I remember hearing the siren all the way to Traverse City. We arrive in Traverse City and they take me to the ER I was only there for a short time in and out consciousness. But off to OR we go.
I wake up the next morning in a hospital room hooked to a pain pump, and 26 more staples. The surgeon comes in and we have a long talk about what happened. I ended up with my intestines being twisted and bowel obstruction. He was able to repair that I did lose a small portion of bowel nothing to be concerned of according to the surgeon. I ask him if this can ever happened again and he cant give me a straight answer because he just doesn't know. Oh and by the way the surgeon is from the same office that did the gastric by pass on me. I was told I died on the table obviously he was able to revive me. I questioned the die thing, and was told my heart stopped beating, I was already on a vent so they were already breathing for me. I spend the next 5 days in the hospital, maxing out my pain pump. I get released and sent home with pain meds.
So here I am still off from work still in pain. Yesterday the incision was itching and I scratched it and all this puss and nastiness comes pouring out. Off to the ER I go. They clean out the incision and put in a drain wick thing. I have to be in Traverse City Monday so they tell me to leave the packing in and have my surgeon remove it Monday and let him decide how he wants it handled from there.

I have lost over 200 lbs since surgery, my diabetes is gone, sleep apnea is gone, pain in the hip back gone, I can walk for miles and not get tired. At least before these last two rounds of surgery.

I am back in chronic pain I just cant get this surgical pain under control I cant stand up straight. I cant go more than 4 hours with out pain medicine and without having to lay down. I have been thinking things over.

Now for the family part. I have decided I no longer want to have anymore surgeries done even if it means I might end up dying. I am 34 years old, I feel as though I have the body of 90 year old. I just know I cant go through this anymore. My family keeps telling me to stop acting so foolish. I tried to explain the amount of pain I'm in and they just dont get it. I can't keep going like this anymore. I am already on antidepressants so yes I am aware I sound depressed but its amazing what pain with do to you.

 

[jjdward]

God Bless you! I will be praying for you. If you ever need anything, not sure what I could do other than pray but i will try, just let me know. I hope everything works out for you and your family.

 

[beak]

Have they been able to explain why the intestines are having problems. Hang in there. More people commit suicide over chronic pain than any other cause. Most of those are people that will always have the pain. It sounds like your pain will eventually go way. You didn't say if you had kids or not, but people love you and if there is hope at the end you should suck it up. If there is no hope then I can see where you're coming from.

 

[Sitka]

I'm sorry that you have been through / are still going through this ordeal. My wife has a chronic pain syndrome and has considered not going on plenty of times. Please have faith that this will get better --- I assure you it will. I am sorry that your family is not more supportive. It is difficult to put yourself in the place of someone else who is in pain like that when you are not experiencing it yourself and don't realize how it colors your every move and thought. You write that "My family keeps telling me to stop acting so foolish." Do they think you are exaggerating? Do they not realize how limiting this is and how it is affecting your life? I hope they can come to understand. Talk to them. (Not that you haven't, but keep trying). Know your BYC family is here for you. Prayers and good thoughts coming your way.
God Bless.

 

[Southernbelle]

Surgery is the pits. I had my appendix out in college - so, so minor compared to your pain and surgeries - it was still a month before I could wear anything but sweatpants and took weeks before I could stand upright and the gas pain was terrible. I can't imagine how much worse it must be for you. All of this pain is fresh and terrible and surgery itself often backs up your system and puts you at higher risk for obstructions.

I would say give yourself time to heal from this - you barely had time to get over one surgery before you had to have another one. Give your body a chance to get over it. Most importantly....

LISTEN TO YOUR FAMILY! They are the people that love you and care about you and would walk through fire for you. We're a bunch of strangers to you! This surgery is too fresh for you to make a rational decision right now.

 

[bheila]

I can't even begin to imagine the pain your going through. I myself wanted to have gastric bypass but being almost 200lbs overweight with NO comorbidities doesn't qualify me

Any kind of surgery is scary but the fact that your not healing from it, getting infections and then having to return for more surgeries is enough to make anyone want to give up. It is your body and your choice, your family will just have to live with it

When my grandma was dying because her lungs kept filling up with fluid my family wanted to keep taking her to the ER to have them drained, but I knew it was a lost cause. It would have just been a long drawn out death for my grandma. I kept her at home on pain meds where she wanted to pass away peacefully.

 

[Camelot Farms]

I'm so sorry for all that you are going through.

My DH went through something like this 18 months ago, not nearly as extreme but he told me that he was tired of feeling like a 'lab rat' and he wasnt doing anything else!

Thankfully, nothing else has had to be done but I understood what he meant and would have almost certainly begged him to change his mind because I love him and I would miss him. So, it would have been all about me and not at all about him and what he wanted. Selfish? Absolutely but I wouldnt have been able to help it.

I pray that your health will improve and that you will have no more battles to fight and give yourself time to heal physically and emotionally.

Blessings...

 

[insiderart]

I want you to make an appointment with a pain management specialist TOMORROW!! Amazingly enough there is a whole specialty of doctors who can help with chronic pain. I was in a similar position almost exactly a year ago. I had been chronically ill for over 7 years, the last 4 really sliding down hill, and the last 2 of that practically bedridden. I was at the point to where I was wishing for the old days of the Sanatorium. You know when your family would decide you weren't doing what was expected of you, so they "checked you in for a year or two".

However, I knew that my DD really needed me and that I had more to give to the world. Since you are obviously a paramedic or fireman it would be hard (for me) to reconcile the fact that there are obviously more people who need me to help them, that don't even know it. Amazing the impact that one person can have on the world around them. You are meant for important things, things you don't even know about yet. This trial you are going through will make you so much more understanding and compassionate to others in your same situation. What if there is a guy just like you, waiting to hear your story and how you made it through, but this guy is 5 years away. I personally do believe we have directives in life, we are given a choice yes.. but we have things to do in this world of which we aren't even aware yet.

Now last year I finally got a diagnosis and treatment. It has taken a full year from then for me to be a normal Mom and person of the world. But I am thankful I stuck it out.

I would, if I were you, go see my Dr. tomorrow and try another anti-depressant and get a quick pace referral to a pain management specialist. There are people out there who can help you to manage this pain and get through it until your body heals itself.

PM me anytime if you want to talk.

Terri

 

[ridgefire]

Thanks everyone for your support and kind words. There is more I wanted to type but unfortunately I am in way too much pain to sit at the computer any longer. If I can, I will try and finish my story at a later time.

 

[jacyjones]

I am sorry you are suffering in this way. Maybe it would help if your family read your post - it might help to understand what you are going through. Please do not give up - there are a lot of people who love you and need you with them. Be strong and try to believe the pain will be controlled. i wish you all the luck in the world.