Tag Archives: disability

Seven Signs I Should Have Stayed in Bed

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— 1 —

During my most recent psychiatrist visit I finally admitted I hear voices. No, the neighbor’s dog doesn’t tell me kill people. I’ll be alone in the house (as I usually am) and will hear my husband or youngest son say something random  like “I’m runnin’ down the street to Kroger” or “Are the dogs outside?” or “Are these dishes clean?” His advice? Turn on a radio or the TV. Umm, I READ. So I payed some guy who starts writing scrips as soon as I enter his office for my three-minute visit $35 to tell me to watch TV instead of reading books. This is healthcare today.

— 2 —

I went to a small retirement luncheon for someone I’d worked with since my very first day out of college. I’s gone to the wrong location of the restaurant (oops, disabled person makes mistake – one of the many reasons I’m not able to work) so I zip over to the correct location, expecting to catch them at the end of their lunch and just chat a bit. They’d waited for me before ordering, which was incredibly thoughtful, but clearly not the retiree’s idea since I was shocked they weren’t sitting with empty plates in front of them and her response was, “No, we just sat and stared at each other for half an hour.” I gave momentary thought to not giving her the retirement gift I’d had specially made, but it was only momentary.  But when she opened it, she offered to pay me for it. It was a retirement gift. How insulting is that?

— 3 —

I had someone close to me call the national Suicide Hotline and get put on HOLD. Yes, I recognize it’s a volunteer support group. Yes, I would volunteer if I could, but many days I don’t think I could dredge up something positive for someone going through horrible stress with no light at the end of the tunnel. “You’ll go to Hell if you commit suicide” really isn’t helpful if someone feels they are already there.

— 4 —

This nest is 100% empty. I really thought John would be homesick, would occasionally spend the night at home over the weekend, but no. Even though there’s an industrial fan that sounds like a jet engine outside his room and he has to wear earbuds the entire time he’s in his room he stays there. And he eats at The Ville Grill, affectionately known by students as “The Veeg”. Now I can’t imagine eating there. And my house is full of all this STUFF! I used to be able to blame it on the boys, but I can’t anymore. Minimalism, here I come!

— 5 —

Trying to follow the latest season of American Horror Story, but I’m having problems. Between the remake of “IT” (which I haven’t seen and will never see – because Stephen King doesn’t watch that crap, either. He just cashes the checks and keeps writing.) and the creepy clowns in AHS-Cult the futures of every person who went to Clown College is pretty much in the toilet. Clown College is (or was) a real thing. Makeup techniques, costume design, stunt work, and body language and facial expressions that can be seen from the furthest seat away in the big top. I guess they can work the fashion runways – the looks are close enough.

— 6 —

How was I able to get up at 3:15 am, blow-dry and curl my hair, but on makeup, get dressed, check email, eat my breakfast, give the dogs a potty break,change a diaper/ breastfeed a child/put them back to sleep all without turning on a light for two decades? Now when my husband is up, everyone is up. The TV is on, the lights are on, the dogs want their potty break while he’s in the shower. And if I’m up late because of the pain the lights in the bedroom must stay off. Even the lowest setting on the dimmer switch in the master bath is unacceptable. I have constant bumps and bruises from simply not being able to get in and out of bed at night!

— 7 —

Don’t EVER buy anything from a store called POSTERMAN. Hopefully it’s just a local thing, a store here in Louisville in Mall St. Matthews. HOPEFULLY. Because my 18yo bought his dad a poster there (what a sweet boy!) at the beginning of August, and the owner is still refusing to refund him the over $150 he was overcharges for the poster. The owner admits his mother (who is elderly enough to say “my son is on a long-distance call”) runs the shop and does not give receipts. Hmmm. Although I was nothing but polite and professional when I called, he insisted I had a “bad attitude”. Then I put my phone on speaker and it soon left my hand. I’ll be camped out at his kiosk tomorrow awaiting his arrival. He insists our BANK took the money. Seriously, don’t fuck with a woman who’s constantly in pain and has lost her thought:speech filter.

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High School Marching Band – the Ugly

Summer is over and band practice starts today for high schools in our state.  Nine in the morning until nine at night, sectionals on the weekends. My husband loved being part of Marching Band. He was a drummer. I have absolutely no musical ability, and am so thankful both our boys inherited Michael’s percussion skills. Our eldest played all four years of high school and three years of college. Our youngest played three years of high school, and has declined to even try out for college because of his negative experiences in high school.
This post doesn’t reflect any of his experiences while in marching band, or any of mine. It’s simply an email I sent, trying to prepare for my son’s graduation. I’ve copied and pasted the emails in their entirety (except for names), so scroll to the bottom and read up. If you are a new Band Parent know that I think this particular high school band is the exception, not the rule. Band kids are awesome, and many remain life-long friends. They learn the value of hard work and being part of a team, how to prioritize, and the importance of physical and mental well-being.
Sadly, they will also learn that just because someone passed a background check they may scream “YOU ARE LOSERS!” at them on a bus from midnight until three in the morning because the band took second place. They will learn that even if they are the best (insert instrument) player and are expected to be that section’s leader they might have to let someone else play the “lead” part in their section because they or their parents complained about the instrument being too heavy. YOU will learn that unless you are part of a certain “inner group” you will not be allowed to help with anything involving the band. I offered to do do a fund-raiser and was turned down flat. I volunteered to help with supper and was told I hadn’t prepared the grapes properly. I offered my nursing skills and was told that if I couldn’t stay for sixteen hours (I’m disabled) I wasn’t worth it. It can be great, it can be horrific – go into it with an open mind!
A—-,
I’m glad to hear the band has changed their position on that issue. It takes one thing off the long list of worries I have about making J—‘s senior year as pleasant as possible within our limited means.
I am well aware of how band funding works, as I was very active in my eldest son’s high school marching band (B—— High School – class of 2—). In fact, I was amazed at how many graduating seniors never paid a cent throughout their four years, even though their annual dues ($600) were only a fraction of E——‘s.
I’m actually glad you voiced your “rhetorical” question, especially since it’s something you have found frustrating. The short answer is HOPE. My husband and I spoke with Mr. A—– (the band director) privately months before J— tried out for the marching band, making it clear we were navigating unknown waters financially and my attorney could not even estimate how or when a settlement would be reached. Mr. A—– assured us it would all work out, and that he would never turn away a student who truly wanted to be part of the band because of financial issues. Whether or not he was legally obligated did not come up.
Hopefully my situation is never one you will find yourself in, but when the primary breadwinner in a family becomes disabled suddenly and unexpectedly short-term disability lasts an average of six months. Long-term disability lasts a maximum of two years due to federal law. Employers are only required to offer benefits such as health insurance for three months. So when a surgery with an expected recovery period of 6 weeks turned into a permanent disability we quickly found ourselves going through our “cushion” in savings, emptying my retirement plan after 20 years of full-time employment, declaring bankruptcy, and being about a week away from homelessness before we were able to get government assistance. J——– County has an exceptionally long wait for disability hearings. Two years ago I was told I could expect a hearing within 12-18 months. I still do not have a hearing scheduled.
Lest you think that we (or any other parents on your “past due” list) are frittering away money on other things rather than paying the band dues we have incurred you can sleep well knowing we have not taken a vacation (even a long weekend) since 2007. We have not gone out to dinner, a movie, or any event as a family in five years. We have food to eat because of government assistance. The only expenses we incur are those we must to keep a roof over our heads, heat in our house, and running water. We have bought NO Christmas gifts this year because we simply can’t afford them. I have yet to break that news to my children. And when we declared bankruptcy we specifically excluded past due band fees because that was something we found so important that we planned to pay that back immediately upon receipt of my back-due disability benefits. Before fixing the plumbing issue that allows raw sewage to occasionally back up into our basement, before making car repairs to make my husband’s 7-day work week (which he’s done for 5 years) safer. THAT is how important we consider paying those band fees.
I still HOPE that we will be able to pay those fees before graduation. And J— has applied to and been accepted by the college of his choice. No, I can’t pay his tuition. And I sincerely hope that if your children wanted to attend college and you couldn’t afford tuition at one of the least-expensive universities in the state that you would not suggest they “find a cheaper or free alternative” to a college education.
I hope voicing your frustration helped. I’m sure these feelings have made holding the position of treasurer very difficult for you. And no, after all I’ve been through it would take a LOT more than a passive-aggressive email to make me “feel bad”.
Sincerely, A—- B——
—– Original Message —–
From: A—- B—
To: A—- B——
Sent: Friday, December 16, 2016 10:43 AM
Subject: Re: ongoing financial crisis – address after Christmas break

A—-,

I have good news that will ease your mind regarding the band dues. Though we assess each student’s family their equal share of the cost to operate the band in the form of band dues, we no longer ask the school to hold up a student’s ability to walk in graduation. No need to look for another person to wear J—‘s cap and gown from our perspective.
It is our hope that each family will recognize that the costs to operate the band organizations are not free and that participation in those organizations will evoke a sense of moral obligation for financial support from each family participating, equally and fairly. Unfortunately, the school does not fund extracurricular activities at any level so we are fully reliant on fundraising and parent band dues. These organizations do not operate in a for-profit environment, so every penny received will be spent. If the organization takes in more than needed to operate, the band dues are decreased the next year. Conversely, if we do not take in enough (e.g. when families do not contribute their portion) or costs are greater than anticipated, we have to raise band dues the next year. We cannot hold any volunteer or family legally responsible for not paying their band dues, nor can we exclude individuals from participating.
I would like to state a rhetorical question and please do not feel a need to reply (I’m just thinking out loud.) In general, why would someone continue to allow their student to participate in extracurricular activities where participants are asked to pay their portion of the costs to operate that activity, when they know that they can’t pay their portion? I understand things happen that are outside of our control and every person’s situation is different. However, this notion is very frustrating to someone like me because, in essence, I am paying for my student to be in that activity and I am also paying a portion of the costs for folks that are unable or unwilling to pay their portion. If I knew that I couldn’t pay for an activity, I would tell my kids to find another activity that is either cheaper or free. I’m not stating this to try to make anyone feel bad; I’m just voicing my frustration.

 

A—- B—, Treasurer
Treasurer@——-.org
— Band Parents’ Association
PO Box —–
L———, KY 40—
On Thu, Dec 15, 2016 at 6:11 PM, A—- B——

<a—-@————-.com> wrote:

 

J— B—— was part of the Eastern marching band during his freshman, sophomore, and junior years. He was not able to be involved this year, his senior year, because of a need to apply those thirty-six (average) practice and performance hours per week during the Fall semester to academics in order to prepare for college.
We were able to pay almost all of his fees his freshman year because I was still receiving 50% of my regular pay via disability insurance. I am the primary breadwinner in our family, and have been disabled since my third and fourth spinal surgeries in the Spring of 2011. My disability insurance paid 50% for two years (2013), which is all the federal government requires any disability policy to pay. I have not yet been judged “disabled” by the federal government or begun receiving disability payments. The wait time in J——– County is extremely long.
Since then our family’s financial situation has only worsened. We cashed in all our retirement funds for living expenses and sold anything of any value that we owned. We declared bankruptcy. We were so close to foreclosure and homelessness that a date had been set for the public auction of our home before we were able to find government assistance. Even though my husband has been working 6-7 days per week (no vacation since 2007) we are still living at the poverty level. Our adjusted gross income for 2015 was -$6,000. We are dependent on SNAP (food stamps) and J— is on the free lunch program at school, which Ms. W—- can verify for you after Christmas break if you need further confirmation of our financial and family situation.
I know that E—— High School will not allow any graduating senior to “walk” with their class to receive their diploma unless all school fees are paid. Since today I had to make the decision whether to buy my children Christmas gifts or pay the LG&E bill (it’s 19 degrees – I paid for heat) I would appreciate it if you would give consideration to forgiving our debt to the band as an act of charity. Charity for a young man who has spent his entire high school career trying to be of service to others while dealing with extreme stress at home, my suicide attempt, my husband’s insane work schedule, and his only brother moving across the country.
I understand if the Board votes not to forgive the money we owe for J—‘s participation in band – I TRULY understand. But if that is the case I need to prepare J— in advance for not being allowed to attend his high school graduation.
Sincerely, A—- B——
P.S. Mrs. W—-, I have ordered a cap and gown. If John isn’t allowed to walk can I ask you to give it to someone about 5’11” who can make use of it? Thank you in advance!

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2017 Resolutions and Prayers


2016 wasn’t a great year for me. There were some fantastic moments (like finding out I was going to be a grandmother!) but there were a lot more days full of frustration, anger, pain, and depression. I ran across my list of 2016 resolutions the other day and realized I hadn’t achieved any of them. With some I’d even moved further from my goals. So my 2017 plan will be completely different.

— 1 —

I will care my myself as I would a daughter, sister, or beloved friend. Remember the Golden Rule from Sunday School? “Do unto others as you would have them do unto you.” That’s great for little ones, but when we are adults we need to stop the negative self-talk. I won’t call myself fat, lazy, or selfish. I’ll think about what I would say to someone I loved if they felt that way. And I’ll pray for help seeing myself in a different light and making changes where I can.

— 2 —

I will accept my limitations. I can’t stand for more than fifteen minutes. I can’t sit for more than thirty. That’s on a good day. Taking a shower feels like what running a 5K used to feel like. I’ve got a new medication patch I’m cautiously optimistic about, but even with insurance it costs as much as a week of groceries. So I’m using it sparingly. My disease process is never going to get better, only worse. Hence the first word: Degenerative. I can only hope to slow it, because at the rate it’s going I won’t be able to bend my spine at all by the time I’m sixty. So I’m going to paraphrase St. Teresa and try to do small things with great love!

— 3 —

I will stay authentic. When I was having a bad day earlier this month I posted on FaceBook. Yes, I’m one of those people who shares both happy and sad moments on social media. I’ve been accused of “airing dirty laundry” on FB, but nearly all the comments I got on this post mentioned something about how “genuine” or “authentic” I was. There is no higher praise as far as I’m concerned. I refuse to be caught up in other people’s lies. Perhaps I have just worn out my filter after all these years working with doctors, but I enjoy being honest in all my interactions. Perhaps that will keep me from earning a Lexus selling Nerium with my husband, but I don’t think so. It may take me longer, but I know I’ll have earned it honestly and made no promises I can’t keep.

— 4 —

I will count my blessings. I keep a prayer journal, but in the warm months my entries are sporadic. If I feel up to it when the dogs want a potty break at 8 a.m. (my first pain med and muscle relaxer are at 6 a.m.) then I’ll stay up to check email, and perhaps have breakfast. But on a stormy or cold day I may need some time to make my way out from under the covers after seeing to the fur-babies’ needs. In the winter I always need my Happy Light, and that’s a great time to write in my prayer journal. Blessings I’m thankful for first, then prayers. I want to make this a habit every day, not just the hardest days.

— 5 —

I will continue writing. Again, it’s difficult with my physical limitations to write a blog post, let alone a novel. But I enjoy it, and it’s an outlet for my creativity. Hopefully once I’m ready to publish my books people will enjoy them. Being able to entertain others would make me incredibly happy!

— 6 —

I will become more organized. This one is going to take lots of prayers for patience on my part. Having my life, my home, and my thoughts disorganized is incredibly frustrating to me, and only worsens my depression. But spending hours sorting and dumping things, re-copying from one calendar to another, etc inevitably leads to me overextending myself and ending up writhing in pain in my bed for a day or two. Even after all these years I still need to use my timer every single day or I pay the price.

— 7 —

I will simplify my life. All the “stuff” that surrounds me is distracting and anxiety-provoking. Living simply will be easier, healthier, and much more rewarding in the long run. Yes, I’m going to finally buy the “tidying up” book that I’ve had in my Amazon inbox for forever. Or perhaps I’ll see how long the wait is at the library. That would force me to read it promptly to avoid late charges 😉

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