I really encourage people to look this site over. It is for a range of every MH issue, patients, caretakers, people just not sure... It allows you to post a feeling which it charts and its very, very clearly for the everyday person.
Saturday Project 375 and my counterpane had a 1/2 marathon. During this race to end stigma they asked for comments on my counterpane along the way. I posted a short post and went on about my morning. As I logged into Twitter I was blown away by the fact (They told me but I forgot) that mile 9 was dedicated to me. I was blown away. It's often this sort of validation that propels several good days in a row.
I think these 2 entries will give a glimpse into BPD up's and down's...within hours or days or even the writing of a post or minutes. It's tough....
Entry 10/07- Scared
It was my job for 15 years, 8 in MH to know the KS assistance programs and eligibility inside out. So...as narcissistic as this may sound...I was an expert so it isn't an issue of not knowing the system. The 2 issue(s) are that KS opted out of OBama Care for their own interchange, their own rules. The cap assistance at $768 ish a month. For a family of four. Which is absolutely ridiculous. I'd like someone to tell me how you can pay rent and bills on $768/month. KS has a very clear message, always has. If you don't like how we run things...then leave. Seriously. It is literally called the "Republican Taliban of the MidWest" That issue is solved as we now qualify, however they have to 5 weeks to process our "new information" so we are on our own for meds and have exhausted the RX site that gives you the cheapest place. In addition Dr. visits are not covered as they used to be w/a pending application. Sorta sucks they want an $81/payment up front and KS does not require Ins to retro bill to the eligibility date...most do, or used to. The main issue is the disability. Again, a federal program administered differently by each region. I actually have a friend who is a Disability judge in New Jersey. We talked and he said the case would have never reached him and if it had he would have ruled for me before the hearing. Its pretty cut and dry that I am working hard but the danger outweighs any benefit from me working. I still have to turn and walk away...and that isn't real conducive to long term employment. There isn't anyone in my life, professional or personal, that disagrees. Nor do I though for months I hated the fact. Anyway...my judge I see in 3 weeks has a 29% approval rate. Natl is 58% and KS is 47% The piece that was never factored in was my wife not being able to work and I really feel its inappropriate to elaborate her situation. But she clearly should have applied in 2008. So we are just in a difficult place. Moving isn't an option as we support my father with all he has (70, raising a 13 yr old mixed child) a brain damaged wife and so he pays our rent in lieu of our tax return. It is really really hard for me to acknowledge the same holds true for me. At least for now. I've felt victimized this last year, every fiber in my body says Men don't get disability unless they are missing limbs. It's shaming, humiliating and to then have to jump through hoops based on where I live...its really hard. When I did work, I worked hard. I never called in sick, always had vacation time left. Worked many 50+ hour a week jobs. What I have come to accept is that disability is as much for those that can't keep a job as it is for those that can't get one. But its still hard. As Mindy as said before, "you aren't rich" (paraphrasing) It's about 20% of what I made in healthcare. But...part of my need to commune with nature, take drives, day trips with the kids, gas to Dr appts., bills. These are all affected by no income. It's a financial consideration to go to church as an example. It completely immobilizes me. Of course I don't think disability is for my day trips. I do think disability was created to SAVE families when a parent was unable to work. Regardless of my checkered work history no one ever said I was a slacker. So I do think disability is designed exactly for people in my situation. To help support my family until I can. To make the process take 18 months, without allowing me to earn income during that time, is yet again another rule designed to force people to drop the application if there isn't another source of income. Years ago I looked into trying to create a non profit type of organization with offices in the poorer parts of the city that could, at no cost, provide resources for people from food to healthcare to anything system related. Navigating the system is impossible as the system is designed to out last the person. So for me, I am trying to use my story to illustrate what life is really like when you are pushed into a system that is designed to fail you. This is where I possibly feel like I have something to offer.
Michael Johnson Guilty on October 11, 2015; posted about 22 hours ago.
Today is our youngest's daughters birthday. It's hard as most of you know we are struggling financially. I try to tell myself that the time we give them is what they will remember. It's still hard and I probably always will feel the need to pay the price for ways that my own struggles affect them.
Friday we will celebrate down at my Dad's house. Taylor is such a sweet child she really has no clue what it means to have a "party" Her missing Pre-K and being early in the Kindergarten year...we just don't have anyone to invite. The way she so genuinely loves life, no matter what the rest of us are struggling with, is such a refreshing breath of air. She has a resiliency that I hope carries her through life's tougher problems.
I am so grateful for the amount of time I have had with my 2 girls the last 2 years.
I can relate to those that feel "stuck." It's probably one of the hardest things for others to validate but to those that are stuck, it just increases the need to not talk about it. It is another stigma. As though we can pull ourselves out of it.
Mindfulness is one of the pieces of DBT that I actually embrace. Or try to. Right here, right now. For those of us though that have external influences sometimes the present is scarier than the place we seek refuge. I struggle with this immensely.
I think being aware is so important as well. Sometimes that's good, other times not so much. But it leads to Radical Acceptance versus Change. This is one of the more difficult pieces of DBT. Our minds (Personality disorders, not just BPD) think in such stark opposites and we struggle with combining the two.
Learning how to accept where we are is part of it. Learning how to change part of who we are or they way we think and (re)act is where the real work has to come in.
So I do feel guilty. I will hopefully work through that towards awareness, radical acceptance and yes one day change
I want to really let those that ran or supported those running that your message will reach untold people and even if you never know it happened...I believe it happened