by Band Back Together | Dec 13, 2018 | Abuse, Coping With Divorce, Coping With Domestic Abuse, Divorce, Domestic Abuse, Emotional Abuse, Feelings, How To Cope With A Suicide, How To Help With Low Self-Esteem, Loss, Parenting, Parenting Teens, Self-Esteem, Suicide, Teen Suicide |
I was never going to write on here. I was going to comment and offer support… but I was never going to write about how I felt.
“It’ll go away later,” I’d tell myself. “There worse things out there in life than feeling down every now and then.” “Everyone gets overwhelmed this time of year.”
But then I wonder if it’s worse than that.
I’ve always been relatively smart. My elementary school wanted me to advance to 2nd grade during Kindergarten. I was in Beta Club and always enjoyed school. Then, in the 3rd grade, my parents split up. I vaguely remember an incident where my dad hit my mom. They got back together when I was in 6th grade. But, things weren’t going well.
We moved after 6th grade. My best friend had moved away a year earlier and I had a hard time making new friends in my new town.
I was smart… and smart kids aren’t the cool kids.
So, I dumbed myself down.
Things weren’t good at home, either. My parents were not happy and it showed. My mom had a meeting with my teacher’s my sophomore year of high school to discuss my poor grades and my English teacher told her it was because I was bored with school. It was too easy for me, and I had given up.
I had driven myself to the point that I actually told my mother that I wanted to kill myself.
To this day I can not guarantee that it was an empty threat.
After we moved, everything about me changed. I became my mother… she gets upset too easily. She’s depressed. As far as I know, she’s not gotten help for it and she’s always telling me to stop getting “into tizzies.”
I’ve been in some bad relationships where I was used and cheated on and emotionally abused. I was called a “butterface” (everything is okay about her, but her face), ugly, and fat. I think the worst thing people made fun of me for was my nose. It’s on the larger side and now every time I look at myself in the mirror all I see is that damn nose.
How it makes me far from perfect.
I’m engaged now and I love my fiance with all of my heart and I know he loves me, too…but there’s this voice that comes out every now and then and eats away at me.
That voice says that he deserves someone beautiful and he’s going to find her and leave me. My self-esteem is not great.
I trust that he loves me and won’t leave me… but that voice in my head won’t shut up.
The best way to describe how I feel is when you go to a store like Best Buy. If you go to the back of the store where all the TVs are, and you put each TV on a different channel and close your eyes. All those voices, all the things running through your mind – and I can’t make it stop.
My self-esteem is so very low. I can’t even make simple decisions like what I want to eat for dinner. If I go to make a speech or presentation in class, I get so shaky I can barely stand up, let alone speak. In some classes I can’t understand the material, so I cry.
When Tony asks me what I don’t understand so he can help, all I can muster is, “I just don’t understand.”
What’s the most important thing I don’t understand?
Why I went from a smart, outgoing kid to someone who wants to hide in their room with the lights off.
And, then there are days when I feel great and nothing is wrong and I just say to myself, “it went away like usual. See? Everything is better. Sometimes people just get sad.”
Until that voice in the back of my head finds those remotes again.
by Band Back Together | Dec 12, 2018 | Blended Families, Bone Cancer, Brain Cancer, Cancer and Neoplasia, Denial, Depression, Family, Love, Sadness, Stress |
I come from a large blended family.
I have six siblings- four brothers and two sisters. I’m especially close to two brothers.
November 19, 2017 will always be the hardest day of my entire life. You see, early that morning, I got a text from my mom asking me to call her; it was very important. I called her immediately, expecting that my grandfather, who is already in terrible shape, had fallen again or had another stroke.
When I called, the first words out of my mouth were, “Is it Pappaw?”
It wasn’t. It was Eli, my youngest brother, just 25.
He had committed suicide in the middle of the night.
I screamed for hours it seemed. I couldn’t stop screaming.
My baby brother, and one of my biggest supporters, had chosen to end his life with no signs of depression or struggle beforehand. I cried myself into one of the worst migraines of my life.
I was in the ER that evening seeking treatment.
As if that earth-shattering day wasn’t enough, the next day was just as bad.
My dad, 66 years old, had gone to the ER complaining of back pain and unable to walk. I mean, his legs wouldn’t support him or move, not that it hurt to walk. After scans and exams, we found out that he had stage four cancer. His bones were riddled with cancer.
He went straight from the ER to radiation.
Now, this is a double whammy. Not only am I reeling and numb from Eli’s loss, but now I have to hold myself together to support Dad. He’d always been my greatest supporter, it was my turn to help him.
I immediately began packing bags to go to his side. After a cluster of idiotic errors and misjudgments by the doctors, he was finally given an accurate diagnosis regarding the type of cancer and I stayed with him as much as I could during the next two months.
Dad died January 30, 2018.
Since losing these men that helped shape who I am, I’m barely breathing some days.
There are times when it all seems like a nightmare. There are times when I’m drowning in tears. I’ll never be the same. I don’t know how to live in a world without them. As crazy as it sounds, I’m reluctant to seek grief counseling. I’m worried I’ll hurt more if I’m forced to talk about it. I am on an antidepressant that takes the edge off this utter depression.
I distract myself with movies and books to get through the day.
by Band Back Together | Dec 11, 2018 | Birth Defects, Chiari Malformation, Health, How To Help A Friend With Infertility, Infertility, Male Factor Infertility, Multiples Pregnancy, Neural Tube Defects, Pregnancy, Pregnancy Complications, Spina Bifida |
Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I didn’t have much hope for our IVF cycle. We transferred two embryos and none of the remaining eleven made it to the freezing stage so I thought I had a couple of duds in my uterus as well.
I ended up pregnant with twins on our first try.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
Delivery day.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Fuck.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
Life altering not life ending.
by Band Back Together | Dec 10, 2018 | Anxiety, Anxiety Disorders, Coping With Anxiety Disorders, Feelings, Generalized Anxiety Disorder Resources, How To Cope With Post-Traumatic Stress Disorder, Mental Health, Post-Traumatic Stress Disorder, Trauma |
No one person is exactly the same as another. Mental illness affects everyone differently.
PTSD is defined as a condition that occurs in some people who have suffered through traumatic experiences. These feelings of anxiety, discomfort, and being scared can happen to people in their normal everyday lives, and those who have PTSD learn that these symptoms doesn’t go away. We suffer from many different symptoms on a regular basis.
Medical professionals feel PSTD is when someone has these lingering feelings for “at least a month or so.”
I can’t remember a time in my life that was “before PTSD”.
I was diagnosed with Post Traumatic Stress Disorder when I was in my early 20’s. At the time, I didn’t really think too much of it, and I didn’t research it. I was diagnosed with some other issues at the same time and I thought they were the important things I should be dealing with. Looking back on my life, I realize how much PTSD has affected me when I had no idea what it was. Clearly the PTSD is what I should have been dealing with this whole time, as the others are all by-products.
One thing I’d like to touch on is that people without PTSD tend to think that the 30+ year old trauma is what is haunting me today – however I do not normally have flashbacks or nightmares of the very old traumatic experience. It’s like my brain got programmed when I had the first trauma to overreact to all trauma so now, many years later I experience a major reaction to trauma. What may seem small to a non-PTSD sufferer, can be major to the brain of someone with PTSD Your brain tells your entire body to react to this huge event.
Some of my friends could (and probably do) describe me as being a negative person. I’d describe myself as realistic; I try to see all sides of a situation, good and bad. When friends are being very optimistic and point out good things in a situation, I will point out everything – all sides. Pointing out the bad things is why I often get told I’m pessimistic. I try not to, but I live with a constant feeling of fear, worry, and anxiety so it can be difficult for me to feel like things are going my way and everything will be fine. While I try not to spill it, sometimes it still slips out.
Persistent instability to experience positive emotions is described as a symptom of PTSD.
I don’t watch horror movies, and yes I’ve been mocked because I was a “wuss” or a “baby.” Honestly, I just brush it off, because they don’t know what it’s like to wake up in the middle of the night to a flashback. It’s not a dream, it’s not a nightmare, it’s everything you’re afraid of. There are always things in the back of your mind percolating.
Dark closets and corners hiding things that you forgot about or didn’t see as a problem. Today is day when it becomes a problem, and you’re going to remember it in the most traumatic way (even if it didn’t happen that way). It’s going to scare the living shit out of you, and linger with you like a cloud following you around ready to suck you up at any moment.
Every time your mind starts to wander for the following days or weeks, it will go back there and BOOM.
Sweating, anxiety, heart is racing, your body is shaking. You calm yourself down and after a while you feel back to normal again. Just when you think it might have gone away and left you alone, you walk around the corner and see something, hear something or smell something that reminds you of it and BOOM.
Back into high adrenaline mode. You take some time to calm yourself down. You go back to work, or whatever you were doing. You go on with your day. You’re cleaning up dinner, the kids are in bed and you think “I’m tried, it’s been a long day, I’ll head off to bed now too”. You crawl into bed and drift off to sleep. Then when your guard is down and it’s the middle of the night.
BOOM.
You wake up crying and shaking and sweating and scared. I did not know that these feelings were part of my disorder until recently. Flash backs and re-experiencing the trauma including “what if” scenarios through nightmares is a common characteristic of PTSD.
Most of my early life (pre-20) I don’t remember. I have relied on others to tell me what happened, even though I was there. I generally tell people that I have a bad memory and can’t remember much from my childhood or adolescence. I can sometimes be reminded and recall a memory, but I often can’t remember much.
I had no idea that repression and “lost memory” was my brain trying to protect me from my traumatic events.
It is very well known in my circle of friends that I’m easily startled. Most of them find it quite hilarious.
I often find myself at work and round a corner or open a door that has no window to find someone on the other side. I will jump out of my skin and usually let out a high pitched shriek which will usually get a reaction from the other person (either startle them or they laugh or both). This is a characteristic related to the hyper vigilance aspect of PTSD because I’m often on edge or on alert. It is also common for PTSD sufferers to have an exaggerated response when startled.
When something traumatic happens in my life, I can have flashbacks or re-experience the trauma, or sometimes my brain will play out “what if” scenarios. This usually occurs with the newest trauma but sometimes can go back to something that happened many years ago. If the trauma is very fresh, I can’t get to sleep.
Every time I try to close my eyes the event will replay itself and I’m in a state of panic.
This will continue all night and when I finally feel like I’ve fallen asleep I’ll have to get up and go to work, which leaves me feeling exhausted and unable to cope with getting through the day. This as PTSD-induced insomnia.
Another characteristic of PTSD is self blame, feeling hopeless ,and may including having negative thoughts about yourself.
I’d like to let you know, if you’re reading this PTSD is not your fault. If you are feeling this way, I encourage you to seek medical attention and the support of your friends or family. If that is not an option, there are helplines and even chats you can speak with someone.
There are other things that are on the “common list of PTSD symptoms” that I have not listed. Some I didn’t want to talk about and some I don’t normally experience.
I know that Post Traumatic Stress Disorder can affect people differently so I decided to write how it affects me.
by Band Back Together | Dec 7, 2018 | A Letter I Can't Send, Anger, Ask The Band, Feelings, Mental Health, Mental Illness Stigma |
I am finally coming to accept that my mother has a variety of mental illnesses.
I’ve known all my life something was wrong.
Mostly I have ignored it, and even joked about it, trying to blow off steam.
Nothing was ever good enough for my mother. If I came home with B’s on my report card, she would want to know why they weren’t A’s, saying that “I could have done better.”
My father only talked to me about how to fix something. He never shared much about his life, other than stuff about his job. He would tell stories for hours that went on about nothing. In lieu of parenting us, my mother just bought stuff for my sister and me.
Mom was also a bulimic. Day after day when I was growing up, I would hear her in the bathroom throwing up after every meal. If we asked about it, she would deny it and change the subject. Dad defended her and said it was “none of our business.”
My grandmother knew they were incapable of parenting so we stayed over at her house as much as possible. My grandmother basically raised me from the time I was 12 years old. I moved in with her and took care of her after her first heart attack.
Sadly, I was an adult from that day on. I cooked, cleaned and ran her house. We had a great relationship.
Then, my grandmother found out I was gay. She told me I was a sinner, an embarrassment, and told me I wasn’t her grandchild anymore unless I was “healed.”
So I moved out on my own for the first time. We didn’t speak for years.
After Granny died, and later, my father, Mom was on her own. For the first time in her life, she had control of the bills.
It took her less than two years to spend all of the money in the saving accounts that both my dad and granny had left. She then mortgaged her home in order to go shopping and go to the bingo halls. She recently moved in with me because she had no choice: it was me or the streets. She couldn’t manage her money and had gambled it away.
Mom has always been controlling, She gets mad if I leave the house without telling her where, when, and why, even calling my friends to find out where I am. She argues with me over everything: the food, and even the type of trash bags I buy.
She claims that “I owe her” and refuses to chip in with the utilities.
If she is driving in the car with my sister or me and she doesn’t like the music or the conversation, she tells us that she’s going to ram the car into a tree.
She is home all day alone while I go to work. When I get home, if she hasn’t already called me ten times, she has had the whole day to get worked up about something – anything. She will unload on me as soon as I walk in the door.
She gets “nervous” about some story on the local news, or something she heard on the police scanner she listens to all day, or something horrible a friend told her about, and has to tell me that it could happen to me so I must be careful.
Almost every night is a war and a screaming fit complete with her shaking her fists and slamming my door. The next day, she says “Good Morning,” like it never happened.
Tonight she screamed at me, told me to go to hell, and stay there and slammed my bedroom door. I can’t stand it anymore, she refuses to go to a doctor. Tonight I told her if she didn’t get help, I would call an ambulance and force her to see a doctor. I have no support, no family to help.
She badmouths me to her friends, and they always act like I’m such a jerk.
Despite how it sounds, I love my mother.
I know there is help for her, but she will not go. She says therapy is stupid, and she just bites her nails when she gets upset.
Is anyone else going through something similar? Does anyone have advice for me?
