by Band Back Together | Apr 29, 2015 | Anger, Anxiety, Chronic Illness, Fear, How To Help A Friend With Chronic Illness, Lyme Disease, Pain And Pain Disorders, Stress, Trauma |
Lyme Disease treatment options are all over the place – no one can seem to stick to any standard.
This is her frustration:
I am sitting at the ER. I have had a headache since Thursday with pain behind my eyes. It feels like my skull is trying to break through my eyes and nose and ears. I wish it were sinus related. But it’s not.
The reason I’m at the ER is two-fold. I want to make sure that I don’t have spinal fluid building up in my head. The second reason is more complicated. I was hoping maybe I could switch back to being treated here by my neurologist, who is covered by insurance. My Lyme doctor isn’t. She wanted to treat me with IV antibiotics. My Lyme doc thinks that orals are the first line treatment.
You see, Lyme disease is rife with controversy. Does it exist in the numbers that the International Lyme Disease Association says? Are the current tests sensitive enough for diagnosis? Does Lyme seroconvert in the blood like other infectious diseases? Is it easily treatable? Will three weeks (and maybe six weeks) of oral doxycycline treat all forms of Lyme, even if it’s late stage, which mine is? Will four weeks of IV rocephin treat neurologic Lyme?
I have Lyme, but my diagnosis is still suspect.
When I saw my neurologist in September, part of my Lyme test was positive, the other negative. When I went back for blood work,the negative part was now positive. But the positive was negative. Confused? My neurologist wasn’t convinced that I have active Lyme disease though I am symptomatic, and my tests prove that I have been exposed to Lyme (and my first test indicated active Lyme).
So I went to Seattle. I tried Levaquin, but it can cause joint inflammation, so any sign of joint pain and they stop treatment (joint pain is common in Lyme). Then I was put on Rifampin, which I have stayed on for months. It treats a secondary infection that is thought to occur often with Lyme disease. It resolved the shooting electric pains in my arms. I was put on Amoxicillin, which I’ve been on for months as well. Then I tried Minocycline for Lyme. It caused me to walk sideways. I already was dizzy. I didn’t need to have sea-sick vertigo as well. Then I tried Biaxin. I broke out in hives. I tried Doxy. It caused heartburn that radiated to the base of my skull. But the doxy DID work. I switched to Zithromax, and all of my symptoms returned. So I’m back on Doxy and taking Nexium to combat the heartburn. The problem is I’m not getting better like I did before.
What’s next? IV drugs. Insurance will pay for one month. It often takes more. A PICC line. Daily infusion. I was hoping to get treated from someone locally. But it looks like the doctors here don’t want to touch this. When I get home, I will call my doctor in Seattle and wait. And if this doesn’t work, I am flying to the Northeast where this stuff is treated often and where it costs a lot of money to see the top docs.
I am ready to be healthy. Six months with little improvement is just not acceptable to me.
by Band Back Together | Apr 22, 2015 | Bullying, Childhood Bullying, Coping With Bullying, Coping With Depression, How To Heal From Being Bullied, How To Help With Low Self-Esteem, Major Depressive Disorder, Self-Esteem, Teen Depression |
This is her story:
Hi, The Band. I’m a Chinese international student and I’m still trying hard to recover from being bullied in kindergarten.
Back then, I was a shy little girl who was mocked by my classmates; I can still hear their laughter. To make matters worse, my kindergarten teacher was irresponsible (she only cared for children whose parents bribed her). Once, classmates kicked my head in until I bled heavily. The teachers advice? She told me to lie to my family and say that I “fell down accidentally,” clearly my own fault.
The effects of bullying persist. I’ve suppressed my own wants and desires so that I can please others; my family, classmates, and teachers. I was a nice girl, I studied hard, didn’t waste my time on music, pop culture, relationships during my adolescent “rebellion.” I took every word of my family, friends, teachers, and classmates seriously, even when they’d ask me to do something I didn’t want to do. Everyone thumbed on me and nobody thought I was problematic – including me.
I began to notice problems when I was in college: I cannot keep diaries for myself (but I can write for school work). I cannot develop hobbies, enjoy music just for fun, or express myself on social media unless it relates to school work. I don’t have any idols. Anything of my own preferences feels obscure and unimportant. My self esteem is low, I never feel proud of myself.
It’s hard for me to say no to others. I don’t even know what it feels to like fight for myself. I’ve compromised myself many times no matter if I wanted to do it or not (and there are a lot of things I like and dislike). I treat everyone the same, no matter if he/she was cruel to me.
I feel especially uncomfortable when it comes to meeting some outstanding, strong or potential-to-be-bullying peers. All my current friends are somehow weaker than me. While I relate to most of my peers during school, I never contacted them after graduation.
I need to pretend to be exciting to my peers or siblings.
I’ve just recovered from two depressive episodes and begun the long process of healing, empowering, and understanding myself. I repeated “I love you” everyday to myself since last April.
It worked!
I can calmly write for myself. I can express myself on social media. I started to figure out my likes and dislikes. I began to asking my Chinese friends to help if I have concerns about my life. I stopped taking school so seriously so that I can best understand myself and the world. I’ve begun reaching out to help other people who feel weak, depressed, or bullied learn to love themselves. Invigorated, I’ve started to contribute to the development of my discipline in China. I’m comfortable and peaceful being alone doing nothing. While I stay alone here, I’m never lonely.
I have goals now, too! There are a couple of things on my bucket list (traveling, feeling a sense of belonging with my peers, learning to make friends with people who intimidate me) are things I really want but haven’t had acquired yet. I want to fight for myself (when necessary), go to parties and have fun, enjoy music, and attending online or offline community activities.
Life is certainly looking up.
by Band Back Together | Apr 12, 2015 | Anger, Anxiety, Breast Cancer, Cancer and Neoplasia, Denial, Depression, Faith, Fear, Hope, Love, Mastectomy, Stress, Trauma |
If you read my profile, you already know that I’m married 23 years with 2 teenagers; a daughter, almost 20 and son just turned 16. Four years ago I was diagnosed with breast cancer, went through a double masectomy, chemo, radiation and reconstruction. I was in remission up until 3 months ago when it was discovered that the breast cancer has returned, in the lining of my stomach, treatable, not curable (1% chance).
This is not to be mistaken for stomach cancer – confusing right?
Needless to say I went through the depression, anger and shock all over again. Only this time it was harder. The optimistic goal of beating it wasn’t as easy to grasp because it had already returned once.
My meds have been changed, my doctor’s visits are more frequent and the side effects more intense. Hotter flashes, sleepless nights and mood swings. I am not always the easy-going, jovial Queen that used to rule this Kingdom. No, I often become that dragon you referred to in the Bands write-up. But I allow myself to breath some fire, release some anger, then I straighten my tiara and return to my throne surrounded by my adoring and supportive family, my riches, my strength, my motivation.
I could fall in the moat tomorrow and get gobbled up by… well whatever lives in moats. I’m not going to let this Cancer defeat me and takeover my Kingdom…
I know I will have bad days but I also know that I will get through them with a little help from my army (my friends and family) …
Today was one of those bad days and then, suddenly, you appeared!
The Band Back Together Project. Thank you for being here.
by Band Back Together | Mar 1, 2015 | Anger, Cancer and Neoplasia, Cancer Survivor, Caregiver, Coping With Cancer, Depression, Fear, Feelings, Guilt, Happiness, Romantic Relationships, Stress, Trauma |
Imagine being 21 and attending one of the most well-known public universities in the United States. You are studying something you love, having a blast with your girlfriends, and always on the lookout for a potential suitor. You’ve lost some weight and feel really great about yourself. You’re four months away from graduating (a semester early!) and starting your life.
Your future is at your fingertips.
And then you get slapped with your mortality and it feels like your world is crashing around you.
You have cancer.
You know what? Sometimes the chemo, the vomiting, passing out, and the ever-present thoughts of death wasn’t the worst part.
Sometimes, the worst part was sitting on your parents couch at twenty-one, wishing you were going out to that amazing party with all of your friends. Or watching your hair fall out in chunks in the shower. Your beautiful, personality-defining red hair just washing away down the drain. Or realizing part of your soul died when you asked your dad to shave your head because you just couldn’t watch the slow process of it falling out any longer.
Sometimes the worst part was looking at yourself in the mirror and just watching the tears stream down your face as you realized that this is your new reality. You are a twenty-one year old woman and you are bald.
Maybe the worst part was the steroids. Good God those things are evil. In a matter of weeks you transformed from that trim, vibrant woman that you were so proud of, into a bloated, chemotherapy-ridden sick person. You have that look of cancer and it crushes you.
And then there were those few moments where you felt good. You put on nice clothes, brush out your fabulous black wig and get ready for a night of normalcy. The drinks start to kick in, you start talking to a handsome guy. One thing leads to another, he leans in to kiss you and goes to put his hand on the back of your head…. and you freeze. Because you know the second he touches you he’s going to feel your wig. Your cover is blown, you are not one of the normal girls. And the last time I checked, most guys weren’t looking for a date whose chemotherapy schedule would have to be worked around.
So then you just stop going out. You realize this is temporary and it may not be fair, but it was the hand you were dealt.
You live with it.
You stop sulking.
Hair grows back.
Weight can be lost.
Love is still out there to be found.
The bars aren’t going anywhere and you can graduate next semester.
They caught it early.
You are going to be okay.
Other people have it SO much worse.
You will still get that whole wonderful life that you always dreamed about.
You are lucky fortunate blessed.
by Band Back Together | Feb 22, 2015 | Anger, Faith, Feelings, How To Help A Friend With Infertility, In Vitro Fertilization, Infertility, IUI, Jealousy, Stress |
I remember the day that we were finally diagnosed with unexplained infertility.
Unexplained infertility means that there’s nothing wrong with either one of us and no medical reason that we shouldn’t be able to have a baby. We spent so much time and money just to find out there wasn’t a damn thing wrong with us. Five years of trying, with not even one scare, and there nothing wrong.
After finding out we had unexplained infertility, we joked that we “just didn’t do it right,” but peel back the layers of joking, and you found a lot of ugliness. Ugly things like anger. And depression. And jealousy. Oh, and there was pain – lots of pain.
To find out that there was nothing actually wrong with us, but that medically it was still a problem was very frustrating. We had struggled with infertility for years.
We talked to our doctor about our options and I immediately began researching our situation and possible options and solutions. We could try to take fertility drugs that would make me produce several eggs in one month with the hope that the sperm would have a better chance of fertilizing one of them. Cheap and less than a 50/50 shot. We could do intrauterine insemination or in vitro fertilization. More expensive and even more expensive, and not much better odds.
All of those options frustrated and saddened us. We wanted to have a baby the old fashioned way. We didn’t want to “buy” a baby or have a baby “made” for us in a petri dish. We thought about it. We talked about it. I prayed about it.
We decided that fertility treatments were our only options at this point. For us, the “medicine” for having a baby was coming to terms with not only the fact that we’d never have a baby the old fashioned way, but also coming to terms with the fact that we wanted a baby so badly that we would do whatever it took to have one. The “medicine” was the love that we had for one another and our future family. The need to see what the two of us put together would produce. The need to get rid of the constant clouds hanging over our heads every month that passed where there still wasn’t a baby.
Two fertility treatments and three kids later, I’m so glad we decided to take the necessary steps to have a family. God gave us a bumpy, rocky road to travel down, but made it worth it. I am grateful and very humbled by the blessings that we have received.
I think of all of the other men and women still struggling with infertility. The ones that have done in vitro 5 times and still don’t have a baby. The ones that can’t afford fertility treatments. The ones that don’t even know yet that there’s a problem. I send my prayers and best wishes to them.
I know how hard the process was for us, and how hard it was to deal with every single day.
by Band Back Together | Feb 11, 2015 | Abandonment, Anger, Anxiety, Child Abuse, Compassion, Emotional Abuse, Estrangement, Family, Grief, Help For Grief And Grieving, Loss, Sadness, Stress |
I dread the day, but I know it is coming. The day when she asks why she doesn’t know her grandpa, or if mommy has a daddy, or why grandpa doesn’t talk to mommy but he does talk to her uncle, or why grandpa doesn’t want to know her or love her. It is coming.
It would be so much easier to tell her he was dead. I wish I could say that were true. If it weren’t for the fact that he is still very much a part of my brother’s life, and the likelihood of her knowing that he does exist is high, I might have no qualms lying to her and telling her that grandpa is dead and gone. Because he is dead to me.
It will be six years in January since we spoke.
The angry phone call that started with me announcing our engagement and ended with him telling me “good luck with the rest of your life” was the last time I could feel the hate in his voice vibrating through my bones. After telling me he could never be happy for me and reminding me what a huge failure I was for marrying someone who doesn’t hunt or watch NASCAR or eat meat and has tattoos, the phone clicked and I knew that would be the last time I spoke to him.
At four months pregnant, I mulled over the idea of informing him about his future grandchild. I decided to do the responsible thing and write him a letter and tell him he is welcome to know future baby if he so chooses. Why I offered such a gracious peace offering to him is beyond me now. A month passed with no response and I assumed he just didn’t give a shit, which, he obviously did not.
When I received his three-page hate-letter, my heart stopped in my chest. All air escaped my lungs. The words I was reading were piercing, deliberate, familiar –filled with hate and such inconvenience– the way I felt my entire childhood under his rule. The words and filth and lies he wrote made me grateful to no longer know him. It made me realize that even though the choices I had made were difficult to make, and the process of breaking generational cycles felt like trying to run a marathon underwater, no one is destined for a life reflective of the one from which they came.
It really solidified the choices in life that I had made up to that point and showed me that I truly have been, and always will be, a better person than he could ever dream of becoming.
I know the day is coming, the day she asks who her grandpa is. If he isn’t dead by then, my only wish is to handle that conversation with truth, grace and compassion like a champ, in a way he never could.
