by Band Back Together | Jun 10, 2011 | Ulcerative Colitis |
The first time my ulcerative colitis flared, I was finishing grad school and planning to move to a new state. I didn’t want to move, didn’t want to do all my ex wanted me to do, but was too afraid to stand up for myself over anything. I ignored the flare for a long time, resulting in the need for months of steroids and immunosuppressants. Not to mention the pain, just about living in the bathroom and the consequences when I didn’t live in the bathroom.
I didn’t even know what ulcerative colitis was (an autoimmune disease where your body attacks your colon, similar to Crohn’s Disease) when I was first diagnosed. But taking care of my disease – of me, really – finally gave me the nerve to stand up to my ex.
Since then, my colitis has been remarkably mild. It’s flared a few times, but not like before. Every time it flares, or even starts to flare, I take it as a sign. It’s my body telling me something is very, very wrong and that I need to face it and deal with it. It’s also telling me to take some prednisone, but that’s a small price to pay.
So anyway, I’ve been trying to just actually DEAL with my feelings instead of ignoring them, as well as try to take care of myself sometimes ever since this disease hit me 15 years ago. And it’s been working. I take no maintenance drugs, monitor my eating only a bit and spend a lot of time writing. But I still always feel like the threat is there. Like if I fuck up badly enough, I’m gonna flare.
Lately I’ve been trying to pull myself out of this situational depression. When I got a horrible case of strep and a sinus infection last week, I wanted to crawl into my bed and not come out. When I finally got on antibiotics and read the warnings on the label, they included: “May cause colitis for up to several weeks or months after ingestion.” Okay, I thought, this is it. I checked my prednisone stash. I put all my new magazines in the bathroom. I wrote out the kids’ schedule so it would be easier to find helpers for all the driving.
And…I’m not flaring. I’ve had a few issues (sorry, I’m trying not to be graphic, though that’s pretty difficult when discussing colitis) but no pain, no dire emergencies, no hours in the bathroom. I AM OKAY.
My butt is totally flinging glitter right now.
by Band Back Together | Dec 12, 2010 | Anger, Anxiety, Breast Cancer, Cancer and Neoplasia, Caregiver, Compassion, Coping With Cancer, Fear, Feelings, Loneliness, Love, Sadness, Stress, Trauma |
I’m sorry. Right now, I cannot be a good friend. I am not a good wife or daughter, sister, neighbor, niece or cousin. I love you. I appreciate everything you do for me and for my family. But for now, everything I have, every smile I can eke out, every happy moment, belongs to my daughter. I can’t give you what you want, not today and maybe not tomorrow either. I don’t have enough for you.
My fear is all-consuming. I am endlessly treading its dark waters. Your well-intended positivity crashes into me, knocking me down before washing back out to sea. Your genuine, heartfelt words of hope leave me salty-eyed, gasping for air, bracing for the next wave of “You’re so strong!” or “Kids are so resilient!”
Your generous offers to help are not falling on deaf ears, but I’m afraid my desperate cries for it are. I can hear you happily proposing your casseroles, a walk in the park, an eager ”whatever you need!” I’m sure one day I will very much need those things. Today I just need simple kindness, compassion, companionship. I need you to hug me and hold my hand. I need you to stop worrying about the tasks on your list and just be with me, sit here and keep my head above water.
I realize nothing about this is convenient for you. I know the closer you are to me, the deeper the water, the stronger current. I’m sorry that you’re being pulled in, challenged, diverted from your regularly scheduled life. But this is my nightmare and sadly, you’re in it.
so bite your tongue,
you’re not the only one
who’s been let down.
by Band Back Together | Dec 6, 2010 | Grief, Happiness, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Pain And Pain Disorders, Sadness |
Grief is a very strange journey and process. Some days I find myself in the best mood – happy and cheerful and then without warning can be smacked in the face with sadness and tears. Sometimes it happens without warning and one thing I have learned through these 10 miscarriages is that is okay. It is normal and it is okay.
There are times where a certain trigger will bring out the grief and I have been spending some time identifying those and learning to be okay with the emotions that come up. Television has been a big trigger, so has Twitter and Facebook and mostly a specific time of year or date. Those last ones I can brace for {as much as anyone can} or avoid Twitter or Facebook for some time if I feel like I just don’t want to face it for the moment. My husband will brace me for television or movies that might have some sensitive material in it for me and will be there if it gets to me. Those I can all ‘deal’ with. They make sense and can be avoided.
One trigger I am having some trouble coming to terms with – or figuring out just how to deal with – are triggers that are from within my body – normal body functions.
Miscarriages are painful. PHYSICALLY PAINFUL. Cramping and bleeding can be intense and one of my biggest lingering triggers is normal menstrual cramping and bleeding. Kind of a double hit because women can be more emotional during their period and compound that with an emotional trigger response it can be very difficult. Very.
It can sort of throw me back. It triggers me to re-live those days where i was fighting emotional and physical anguish. It leaves me confused. Confused because I can’t avoid it. I am almost certain that the emotions that play into it make the cramps that much worse which is then a cycle that I just can’t seem to avoid.
It has slowed down a bit now because I am on birth control that stops monthly periods but the cramps still come and go and each time I can be caught off guard and will find myself back there.
It is hard. very hard. I am learning that it is okay to feel it. I am learning to sit in the grief because running away from it will not make it disappear. It will be okay.
{right?}
by Band Back Together | Dec 4, 2010 | Asperger's Syndrome, Autism, Childhood Bullying, Coping With Bullying, Fibromyalgia, How To Heal From Being Bullied, Parenting, Rheumatoid Arthritis |
A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.
by Band Back Together | Dec 3, 2010 | Grief, Help For Grief And Grieving, HIV/AIDS, Loss, Parent Loss |
I’ve been thinking a lot about my dad lately. He was my hero.
My dad was the kind of guy who can get through Ivy League med school by drawing cartoons in the back of the class, and still somehow graduate in front. He wore a necklace that read, “War is not for children and other living things,” and took my family to Peter, Paul and Mary concerts.
Dad never read me bedtime stories. Instead, when I was four, he began explaining the theory of evolution in nightly increments. Tom Petty was often blasting in the car, and he used to do a weird hand-clapping maneuver that involved taking his hands on and off the steering wheel which I found exhilarating. He was lucky not to have been pulled over, but it made him the coolest person in the world.
Dad took me to Washington for our last trip. We sat in on an NPR recording and toured the White House. I didn’t understand why on Earth he would pack in THAT many museums visits into one trip. Turns out, he wanted to cram in a lifetime’s worth.
Dancing was the same thing. My father loved to dance with us whenever he could. One day, he had my sisters and I wear dresses, and gave us all a long, special dance to our favorite music (three-year old Carrie, and seven-year old me picked blended folk -too embarrassing to mention. Our favorite Hebrew album was included in line-up. Luckily, my youngest sister was still too little to talk.)
I never understood why he danced with us that day until years later, after he was gone, when I finally learned what a wedding was.
I could go on and on about my father, about what a wonderful guy he was, how he told us if he had to do it all over, he would have been an architect instead of a psychiatrist…
I can generally pull off humor in the most dire of situations, but when I write about my father, it’s hard. I’m still angry at the doctor’s mistake that caused him to hemorrhage and receive an HIV-infected blood transfusion two months before they started screening blood for HIV/AIDS. My dad was gentle, funny, and brilliant – a wonderful human being. I’m angry that my grandmother lost her only son, and I’m angry my mother was left alone with three kids. It’s a miracle my mother never contracted AIDS from my father, thus everyone else in my family is healthy. (We think my mother has Delta 32, making her resistant to AIDS.)
Still, this kind of thing is not supposed to happen.
On World AIDS Day, I want to look back, to smile and thank him for the presents he gave ME.
To the baby born on January 14th, 1952 at Beth Israel hospital in Newark, NJ, weighing 7lbs 11oz, and to the 42 year old man who stood at 6’4, thank you, Dad, for teaching me that no one is infallible. For teaching me that, regardless of race or socioeconomic status, we all are equal.
HIV/AIDS was still relatively new back when my father was first diagnosed. There was still enough stigma that, even in his obituary, my mother wrote he died of cancer because she was afraid of what the people in our small town would think if she told the truth.
Thank you, Dad, for teaching me the importance of being real and speaking the truth. Thank you for showing me firsthand that we all deserve a voice, especially those sick or marginalized.
I always told people the truth about my father, regardless of what people might think of me or my family. I lost friends, as did my mother, but I always wanted people to know that AIDS can happen to anyone.
I stopped believe in miracles that February. But I started believing in the ability of words to transform people’s lives.
Thank you, Dad, for having a bigger impact on my life than anything else in my twenty-five years. If I could give you all the presents your heart desires, I would.
That you lived gave me enough to last a lifetime.
by Band Back Together | Dec 1, 2010 | Abortion, Abortion Recovery, Abuse, Anxiety Disorders, Coping With Domestic Abuse, Domestic Abuse, Emotional Abuse, Infidelity, Major Depressive Disorder |
I can’t believe it has been 15 years since I meet him. There are days it feel like it was just yesterday. I knew his past – his Dad killed himself when he was young and he rebelled. He still did things that you would expect a troubled youth to do, but that stuffed seemed to stop once we started dating.
I can’t really complain about the first year and a half of the 3 years we were together. We were a normal, young couple in love. Everyone thought we were a happy couple. Then I got pregnant. It wasn’t planned, but I was young and “thought” I was in love.
That’s when you started telling me how worthless I was. It’s also when you started to hit me. A punch in the arm here. A shove there. Then you started with my stomach. Told me I was stupid and I wasn’t going to have this baby. You forced me to have an abortion, which in hindsight I am glad I did, mainly because I think if I had carried this baby longer, You would have made sure it didn’t survive.
I was no longer allowed to see my friends. I feel into a deep depression and was heart-broken when you broke up with me. What to do with all of this new found freedom? Take a trip with my BFF of course! Well, once you got wind of that, you had to have me back. Could it be the rumor that I was planning on moving with her to Florida, start a new life? Foolishly I agreed to meet you for lunch. I let you make me think you were truly sorry and wanted me back.
Things only got worse. I had a curfew, had to sneak out to be with my friends, could only do what you wanted me to do. The beatings and verbal abuse got much worse the second time around. I remember the time I picked you up from work at one in the morning in the city and you beat me in my own car because I was listening to a mix tape of songs that my favorite cover band played. A stranger came up to the window as you were banging my head into the car window. He said he was calling the cops and told me to get out of the car, that he’d help me. You stopped hitting me long enough for me to drive away, only to start punching me in the legs the whole ride home.
If I loved you enough, you’d stop, I told myself. You told me how much you loved me.
You were only doing this because it’s what your Dad did to your Mom.
I started sneaking out to go out with one of my BFFs. I started having fun again, feeling like myself again. I cheated on you. I found a great guy, at my favorite hangout, who I had known since high school. He worshiped me. He told me how smart, beautiful and fun I was. It gave me my confidence back.
I got the nerve to leave you. I made sure to do it when everyone was home at your Mom’s house.You proposed to me, told me you’d already asked your Mom for her engagement ring your Dad had given her. I took all my stuff out of her house and moved right in with my new boyfriend. I lived 10 minutes from you for 3 years and you never knew.
To this day I live with the scars you left me, physically and emotionally. I have been on and off anti-depressants for 10 years. I have panic attacks when I am reminded of a bad beating. I freak out when my husband tries to kiss me (like if I am leaning up against the counter & he blocks my way out). I feel trapped, yet I know he would NEVER lay a hand on me.
Luckily I found REAL love with my husband. I told him EVERYTHING you did to me and he still loves me. I am damaged goods, but he loves me anyway. You told me if I left you NO ONE would want me. I can count on one hand the number of people who know what you did to me, but I need to get it all out.
I was a silly, young girl who believed I could change you. I now know, that you were the one who changed me. Not because you loved me, because what we had WASN’T love.
You made me stronger, no I made me stronger.
I survived the hell you put me through.
