by Band Back Together | Sep 27, 2015 | Chronic Neuropathic Pain, Health, Pain And Pain Disorders |
In 2003, I had my beautiful, gorgeous and sweet baby, 3 weeks early and after 5 days (yes, 5 days) of labour. As you can well imagine, when I got to the hospital (which also happened to be my birthday) I had been in labour for 4 days. I was tired, my blood pressure was going up and it was time to get her out. Physically, she was fine, so there were no worries about my daughter.
My back felt bruised, swollen and unsteady and I had had an epidural with her birth, but I assumed that it would go away. I went back to work ten days later as I worked for myself. Three months later – I still felt unsteady. My spine felt tender and I was getting concerned. I was out for a walk with my 120 pound dog, toddler and infant. My toddler ran out in the street and I went to scoop her up. It felt like I had been shot.
My legs went out and I was in white-hot blinding pain. It took me almost forty-five minutes to get home from my usual five minute walk. I managed to get us into my bedroom, shut the door and call my husband.
That was the beginning.
Since then I have had several occasions when I can’t walk, migraine headaches, insomnia, burning pain, loss of function of my hands and face, numbness, electrical shocks, cramping, shooting pain. Currently, I am technically un-diagnosed and am floating around the system. It is awful, but I have seen and know people who have had worse. I have done numerous different therapies, medications, tests, and seven years later, I have no answers and am still in pain.
Losing some friends and family; it has made me want to create an enhanced awareness about Pain Patients.
We are treated like pariahs, criminals, junkies, nut-jobs and the like. We are misunderstood, misdiagnosed, dismissed, referred-out and judged. Pain is invisible and the human brain will delete the actual physical memory of pain. Pain is different for everyone, making it difficult to relate. What is bad for one is nothing to another.
I want to increase understanding and acceptance from the Medical Profession that we are real people, with real problems, with real pain. The Health Care System needs to be properly educated on Pain Medication, Pain Management and Treatment for pain. So that there is hope out there for us.
We need to be heard and recognized.
Thanks for building this site for all of us Painies!!
by Band Back Together | Sep 25, 2015 | Compulsive Lying, Guilt, Love, Uncategorized |
Hello to all. I’m new to The Band. It looks like a great place to seek help, advice, and to have someone who will listen and not judge you.
I have known that I was a compulsive liar for years, but I never thought that it was actually something that was ruining my life. Compulsive lying is an underlying psychotic disorder that can be a sign of something much larger. I began to do some research about this, reading a lot of articles and websites. I had been thinking I was the only person having a hard time with lying, but I started seeing that this disorder is real, other people have it, and it is very serious. The messages written by other people on this site, as well as other websites, gave me hope.
At first, I thought I could really change on my own, but I’m realizing that being a compulsive liar is like an abdication. Some people may really need help to get past this point in their lives. I feel like I am to that point. My first course of action is admitting that I’m a compulsive liar, and that I need to seek help.
It’s so bad that sometimes I don’t even have a clue why I lie. It just comes out without hesitation. Most of the time, when it happens, at the back of my mind, I’m asking myself why I lied. The truth would have been easier to say in the first place. When I have a chance to correct the lie, I can’t because I feel so guilty. I don’t want to admit I’m wrong, or that I just told a lie.
The worst part is that I lie to the one person I love the most. That hurts me more than anything.
Today is the day. I’m going to keep searching for help and with my disorder and try my best to speak the truth, no matter what. If anyone who has gone through this has any advice on how to get past this, I’m all ears. And to anyone who is reading this, if my story is hitting home, please seek help. Know that you are not the only one out there going through this problem. You are not the only compulsive liar in the world. Help is there, you just have to want it.
Until next time, thanks for reading and responding. I’m turning my life around one truth at a time.
by Band Back Together | Sep 25, 2015 | Anxiety, Anxiety Disorders, Coping With Anxiety Disorders, Coping With Depression, Depression, Guilt, Major Depressive Disorder, Mental Illness Stigma, Sadness, Shame, Stress |
Many parents struggle with mental illness. She wonders if she should’ve had kids at all.
This is her story:
For as long as I can remember, I have been a touch crazy. I have suffered from anxiety and depression most of my life.
I was five years old when I had my first panic attack. Only five! I also worry about absurd things; I know they are absurd but I can’t stop worrying.
But now, it’s worse. I don’t remember it ever being this bad. In the last month alone, I have suffered six nervous breakdowns and I wonder what is wrong with me?
WHY am I SO FREAKING CRAZY!?
But what makes it worse is my children. I don’t want them to suffer with me. I don’t want them to know I am this way. I don’t want to mark them or make them afraid for me or themselves. I try to keep it all bottled up and away from them so they don’t really know I am suffering. The only people who know are my husband and my mother, and they aren’t always a huge help. My husband thinks that I should just suck it up and deal. That’s not easy to do. My mother tries very hard to understand what I am going through and help me because I know she watched my grandma suffer at times quietly just like me.
My grandma’s suffering hurt my mom, and that’s what scares me. What if I think I am suffering quietly but my children know? But how could they not? Sometimes a shower is more than I can bear and getting out of the same pajamas I have worn the last three days just doesn’t seem possible.
So they have to know right? Hell, they are 8,7, and 5; not exactly babies. My eldest has Asperger Syndrome and this ridiculously genius IQ; if any of them could figure it out would probably be her. I am so scared of them knowing. I don’t want to be crazy mommy who has meltdowns. I want my children to know me as happy and loving. I know I am loving, but I’m not always happy. And I don’t EVER want them to think it’s because of them. So do I talk to them? Do I explain to them, this is what is going on with mommy?
It’s not you it’s me? God I hate that.
Are they old enough to know?
Or should I leave them in their little children bubbles? Am I hurting them being this way?
Do you think they know?
My next biggest worry and fear is this: in my children I see some of my crazy. My eccentricities, if you will. My eldest, who has Asperger Syndrome, has her own eccentricities. But my son (whom I did not birth) also has these eccentricities, a touch of my OCD, and the anxiety (who could blame him with a mother like his; heck, thinking about me probably makes him sick and nervous). But my youngest daughter scares me the most. She is a very nervous child who worries just like I did. She is scared of so much. She has OCD already at five. No panic attacks yet, but I fear it may only be a matter of time. This bothers me more than I can say. I feel like I did this to her. I feel responsible and God help me I don’t want her to grow up like this. I don’t want her to suffer like I have. I want her to be well and happy and not have fears of irrational things. Therapy is an option.
It didn’t always do me much good, but at times it really does help.
But what kind of mother, who knows she has these illnesses, brings children into the world when they may end up just like her?!
This is my struggle.
Am I bad parent for bringing them into my crazy existence?
How do I handle my crazy so I don’t mark my children? How do I handle my mental health without scaring them?
by Band Back Together | Sep 24, 2015 | Alcohol Addiction, Codpendence, Enabling, Guilt, Infidelity, Sadness, Trust |
If you read my first post, you know I lived with a man who couldn’t tell the truth if his life depended on it. He cheated repeatedly, all the while telling me he loved me more than anything, that he couldn’t imagine his life without me. He said I was his future.
Funny how he could never treat me that way.
He had stepped up his drinking to a horrible rate. He didn’t feel he should keep promises, like showing up at work, if he didn’t feel like it. He drank until he would pass out. I tried not to be co-dependent, but his clients know me, so I was always the one who was stuck having to tell people he wasn’t coming. He certainly didn’t care if we had money to pay the bills on time.
I worked consistently from the time I was 18 until I had to go on disability. I had beautiful credit, so that was what we lived on. BIG mistake on my part.
He went to rehab, lied his way through it and was released after 90 days. He was drinking again within two weeks. He went back and forth to rehab a couple of times, but he always lied and would be drinking again as soon as he was released. It got so bad that I kept getting calls from the fire dept, police, or paramedics. They would find him passed out in a park, and tell me I needed to pick him up. They would never help me. They would lecture me about how he needed help, as if I didn’t know, but for one reason or another, they couldn’t just take him to detox or arrest him.
One day, he drove drunk and thankfully only did damage to our car. I said I had had enough. I told him he needed to go stay somewhere else and think about what he wanted out of his life. He was drinking to maintain, and then went on a binge. He refused to answer my texts, even though I could see he had read them. I warned him he was setting in motion things that could not be undone. He still would not answer.
I am disabled, so I’m not able to work. He abandoned me with just $57 to my name. I have no way to pay the bills, no way to pay for my medications, no way to buy food. I waited, and finally, I filed bankruptcy. Just like that, my entire life’s work down the drain. I could not be more humiliated.
A week later, he finally decided to talk to me. He said he loves me, he just needs some time to work on being the right kind of husband. I told him I wasn’t sure the opportunity would still be there. So now, he’s calling me every night and telling me how much he loves me. Each night, he has sounded more and more intoxicated, so I know nothing has really changed.
I have supported him, through the drinking, for SIX years. He would always say he wanted to be sober, so I kept trying to help. Obviously, he doesn’t want to quit drinking. So, why do I feel so bad? Why do I feel like I’m letting him down, when he has never once been there for me?
When I had my knee replaced, he was too drunk to take care of me. He stole my pain medication, and I never did find out why. I guess he wanted to make me suffer through physical withdrawal like he has to when he dries out. Would someone who loved me put me through that?
I can’t forgive him for abandoning me with no money or food. He obviously didn’t care about me, so why do I still feel guilty and sad? I know I deserve better!
by Band Back Together | Sep 24, 2015 | Cancer and Neoplasia, Chronic Illness, Coping With Cancer, Family, How To Help A Friend With Chronic Illness, Pain And Pain Disorders |
we were supposed to close on our house today. that’s been pushed to friday now. the entire first floor had to be restained and refinished.
tomorrow was supposed to be my final chemotherapy session. now i have no idea what the end of my treatment looks like. maybe two more cycles. maybe imrt.
i’m on prednisone indefinitely to combat the bleomycin toxicity damage. yesterday, my pulmonologist added bactrim three times a week to fight off any atypical pneumonias that steroid users are susceptible to.
the steroids have also swollen me to the size of a freshly cracked tube of cinnamon rolls. poppin’ fresh would be proud. none of my clothes fit. i’m not trying to be all, “oh, woe is me, i’m so fat,” i’m just sayin’… i can’t open the closet and just get dressed anymore.) it really makes for a bad start to the day. and spending money on fat clothes is really not something i’m amped up for.
my feet are blistered and peeling. my fingernails are falling off. my teeth are getting really sensitive. my joints hurt. i’m tired all the time. i’m overly emotional and can be generally unpleasant far too much of the time. half of my hair is growing back, but it looks muppety and i plan to shave it off. i am so beautiful.
nugget has a cold. she’s been seen three times for it (mostly for my benefit) and is really just fine, but it makes me sad to see her sick, especially when there’s little i can do to comfort her. at least she’s learning to cover her mouth when she coughs.
we drove up to northern virginia yesterday for a bunch of doctor appointments. the plan was for nugget and me to go back to my parents’ last night, but i couldn’t make the drive. so, we’ll try again this afternoon. wish us luck!
hopefully all will go smoothly at closing on friday and slowly but surely we’ll start making our way into our new home. i know my treatment will be sorted out eventually, but it’s difficult to see the supposed, and most anticipated, end come and go.
i know, life’s like this.
