The Saga of the Chronically Ill (Long)

Before getting started, please know that there is a whole lot of rant and explanation going on.  Most of us (the chronically ill) do not want your sympathy, far from it, we need you and others to understand.  Understand the frustration.  Understand that the system works against us.  Understand the reality of what we deal with when all we want to do is have our lives back.

We want to go back to the part of our lives when we could play with our kids, keep the housework up,  work at a job we enjoyed, afford to pay bills, occasionally vacation.  Back when we socialized with people other than those in line at the grocery store or we were facebook friends with the staff at the doctor’s office and the ADA drivers.  Back before we became invisible out in public and could leave the house two days in a row or more than two days a week without making ourselves housebound for the next few weeks.  You know, the good old days.

Image result for decorative page breakI went to bed in a considerable amount of pain last night, more so than the kind I have only have on nights ending in “y”.   Knowing my body now unlike back then, I knew that there was no way that I’d be able to make it to my doctor’s appointment today.  For the record, I didn’t schedule the visit, they did in their effort to work in anything billable before the end of the fiscal/calendar year.
Feeling the way I did, I canceled the appointment at about 2am because I knew what was coming today.  I was right.

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I didn’t finally fall asleep until 4:30am because of the pain.  I laid in the bed, sleeping on and off, having dreams of being in some type of new-age modern holocaust-type work camp, my brain making up a story to explain the pain.  It’s one of the quirky things we do that’s quite common for those of us with chronic pain issues because our brain is trying to justify why it’s getting the pain signals when we haven’t done anything or had anything happen to us.

I finally was forced to get up because I had to use the bathroom and had difficulty getting out of bed by myself. Everything I own hurt, I couldn’t make a fist in either hand because my joints were swollen.  In theory, I should have gotten up no later than 8:30am but Alexa told me it was 3:38pm.  I’m unfazed.  With considerable effort, I fixed a thermos of tea (so I don’t have to keep getting up to fix it or do without when I can’t) and made a bowl of Cream of Wheat – having great difficulty trying to mash an over-ripened banana into the bowl with a fork, then again with trying to stir it all together.

I suppose I should give you the laundry list before going further.  I have degenerative disc disease, spinal stenosis (worst of it being in my thoracic spine),  six herniated discs (at last count, although I do believe it’s now up to seven), osteoarthritis, both of my shoulders have been partially dislocated and will slip in the joint frequently, etc.   There are some non-pain inducing entries on the list, but they’re irrelevant to the story so I won’t bore you with them.

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I also have severe fibromyalgia (confirmed by a rheumatologist) along with muscle and nerve damage that all backdate to October 6th, 1996 when I was assaulted at work by a patron as part of a (police speculated) gang-initiation act in a restaurant I was managing at the time.

As of this writing, it is December 2019, not only have I had these issues for the past 23 years but additionally, since March 10th of this year, my ring and pinky fingers of my left hand have been partially numb – something caused in the initial assault, that has returned and shows no sign of reducing in intensity or going away.

I’d moved out of state 6 years ago to my current location at the end of my marriage and needed to start with a new doctor, along with having to apply for  Social Security Disability Insurance because of the rapid decline of my health.

Upon starting with this new doctor, I found out that my old doctor, while happy to write prescriptions and loudly rebuke fibromyalgia as being a catchall way for lazy doctors to bill insurance, it turned out had limited (read nonexistent) note-taking skills.  She had absolutely nothing in my file regarding any of my diagnoses, many of which were from doctors I’d previously seen that she didn’t even bother to get from them.  She didn’t even have anything on file as to why she diagnosed me with COPD and had me on multiple meds for it!

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Needless to say, my new doctor and I worked together to make sure all testing was done to verify every diagnosis, and to justify every medication that I was taking.  For a year I’d been told that a referral had made on my behalf to a pain management clinic, only to find out that it never was.  When I became aware of this I think the best adjectives that would have described me would have been frustrated, loud, emotional, and vociferous.

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I was then told that there was another doctor I could have been sent to the whole time but wasn’t because he didn’t write prescriptions, he just did epidurals and the like.  I demanded to know why this wasn’t offered to me before.  WHY???  I was looking for pain relief, not pain medication!

By the time I got to see this wonderful man and his staff, I’d literally had a headache every day for four years and it had progressed to the point where I had nerve pain going around the outside of my skull, starting from the back, just above my spine, traveling around my head above my ear and was fast approaching the center of my forehead.

If you’ve never had nerve pain, count your blessings.  The best way that I can describe it is to imagine the old TV shows or movie scenes where the villain lights a long fuse attached to a bomb.  The difference being that “sizzling” part is moving as it burns the cord moving closer to the target, whereas the reality of nerve pain is that yes it will travel, but it doesn’t have just one “sizzling” point, everything that did burn is still burning and remains that way no matter how far it travels.  Kind of like Doc Brown’s tire tracks in Back to the Future.

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This new wonderful doctor, “Dr. P”, who is an anesthesiologist,  and his staff have been a large part of my life ever since and always will be.  Because of the issue of the referral that I’d dealt with from my primary care doctor and because one of the three physicians in the practice left and wasn’t replaced, leaving the two to pick up the patient load, I decided that it was time to find a new doctor.

Since Dr. P was in a different hospital system, I opted to find my new primary doctor there so that they would have all the same info, be able to share resources and information, etc.  It sounded like a good idea I thought.  A friend had gotten a referral to a physician in the system from a co-worker, so I decided to follow suit.

Upon meeting and going over my list of health issues, she was quick to point out that she did not and would not write prescriptions for pain medication and would refer me to their in-system pain management doctor.  Great!  My pain was no longer being managed with the Ultram I was being given so this was very timely.

A week later, I’m in the office with the pain doc.  Awesome.  I’m already having a bad pain day, but clearly, this is the right time to push through the pain and damn the consequences.  You should also know that I have severe anxiety, so much so that I take 2 different medications, 7 times a day for it.  Pain also amps up anxiety so I’m going from bad to worse.  On top of all of that, I don’t have enough pain meds to get me through the week.

So here’s the new pain doc, who comes in with an assistant carrying a laptop, and they both keep talking with each other as she pokes, prods, twists, and turns my body, randomly asking me questions but when I’d start to speak she’d return to the conversation with the assistant.  Even without my issues, think for a moment of how you’d feel and react in that situation which was rude as hell.

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I tell her that I need to take an anti-anxiety pill and she tells me no, meanwhile, she’s the biggest stress for me at that moment and is continuing to add to it.  Finally, she announces that she’s decided that the course of treatment will be to start hydrotherapy (cool), cognitive behavioral therapy (um, okay), and stop any pain meds.

So I let her know that I’m glad to know that something new is on the horizon and ask how long into the therapies can I expect to receive relieve and eliminate the pain meds.  Oh, no… you’re getting cut off of the meds now.  ANXIETY OVERLOAD.

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As I go to leave the appointment, I stop at the desk, where I’m told that there’s no follow up because this was just a consultation.  In mid freakout, I call my sister the RN who works to calm me down from another state away.  I then call my doctor’s office and they tell me that they’re not handling me because I’m now a patient of the new doctor.  I tell her that it was a consult, she gets shitty with me and hangs up.  The hits just keep on coming.

I call back on Monday, also asking to speak to the office manager, explaining it all again, and said I apologize if I’m coming off a bit cranky but the situation is XYZ, and the previous phone call (rude, hang up) and not a damn thing I’ve said is addressed and I’m told off again.  I go to get my mail and find a letter in my mailbox from the doctor, telling me that I’m being given a warning and how she will not tolerate me abusing her staff.  Um, I was chewed out and hung up on and I’m the one being abusive??? 

Two days later, I’m at my therapist’s office telling her about all of this, only to have them call me about scheduling the hydrotherapy, fine, and about setting up cognitive behavioral therapy (CBT) – by this time I have her on speaker so my therapist can hear just how shitty I’m being talked to and am put on hold briefly.  During that time, my therapist tells me that if I let the doctor’s office set me up with another therapist for CBT that I won’t be able to see her anymore because that’s what we’re currently doing (I had no idea that’s what it was called) and insurance won’t let me see two therapists for the same thing.  Makes sense.

The woman comes back on the line and I let her know that I don’t need to be set up for CBT because I’m already seeing someone for that, at which time I get “Oh really… and who would that be?”  (I give her the name of the therapist and the name of the practice.)

“Uh-huh, and how long have you allegedly been seeing this person?”  (Allegedly??)  I ask my therapist who I’m sitting across from, “Two years?”, and she says “more like two and a half”“Two and a half years,” I say to the voice on the line when she shoots back with “Who’s there with you?  Working on your story?”  “No, I’m sitting here in a session with my therapist, you’re on speaker.”  Suddenly, the demeanor changes and the call ends abruptly.  Go figure, right?

After that, I get another letter telling me that due to the second call to the doctor’s office (you know, where I tried to tell them I’d been chewed out and hung up on and got treated like shit again) and since I was already “on notice” (which I didn’t know until after the second call) they’re dropping me as a patient!   I’m being completely honest when I tell you that it took me a year to be able to talk about that without it triggering another anxiety attack.

Needless to say, ever since that whole fiasco, I’ve been treated as though I’m drug-seeking.  The irony of the whole thing turns out to be that after I ran out of pain meds, I realized that they had stopped working for me, which is why my pain level was out of control.  There was absolutely no difference in my pain level without them.  I have a history of developing tolerances with medications quite easily, something that always works against my favor, not for it.

So I moved on to another doctor and fast forward to a year ago last fall.  I was unable to afford my medication for two months. At the time I was being given 3600mg per day of Neurontin, all in 300mg capsules, so TWELVE capsules daily of that medication alone, to control my fibromyalgia pain.  Additionally, I was being given 50mg (standard issue) Ultram three times a day as needed for pain related to my spine.  I wasn’t sure if it would work but it did so I started taking it again.  Once again though, my pain wasn’t being managed with all I was taking and again quickly realized why.

When I couldn’t afford my meds, many symptoms came to the forefront of my daily reality, which was to be expected, but my pain didn’t change.  Not one bit.  Sure enough, my pain wasn’t being managed because the medication was no longer working.

Needless to say, I stopped refilling the Neurontin (aka Gabapentin) and handed back the last prescription I was given for Ultram I’d received because I’d get the same amount of pain relief from eating the paper the prescription had been written on as I would from the medication itself.

One of my docs gasped when I told them I’d dropped the Neurontin suddenly when I ran out, informing me that you shouldn’t stop taking it “cold turkey” and asked what withdrawal symptoms I suffered.  None I told her.  You can’t have withdrawal from a placebo and that’s exactly what it had become.  I might as well have been taking Pez!

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So now here I am fifteen months later, I haven’t had anything stronger than ibuprofen (which btw I’m not supposed to take because it causes problems with my COPD, but it’s the only option I’ve got.  When trying to address my pain issues from my fibro, that Dr. P can’t do anything for (or he would in a heartbeat) I’m told that I should exercise.  Yes, there are other medications that work with fibro pain, but the doctor instead thinks I should:

      • walk a block to the bus stop with my cane (hasn’t asked how far it is, doesn’t matter to him),
      • stand (which I can’t do for more than a minute or two because of my spinal issues) and wait for the bus,
      • ride to the terminal,
      • switch buses,
      • take the second bus to the appropriate stop (45ish min)
      • walk back a half block to the gym (uphill btw, still with my cane)
      • work out,
      • walk back to the bus stop
      • stand (which I really can’t do after all that) and wait for the bus
      • ride to the terminal
      • switch buses
      • ride the bus back to my stop (another 45ish min)
      • then walk back to my apartment… rather than giving me a different fibro medication because, you know, I might be drug-seeking.

 

I never know what days will be good or which will make me cry.  Clearly, I can’t do any of this on my bad days, but doing all of that on one of the good days will turn it into a bad day… or worse yet, run the risk turning absolutely abysmal with no one to scrape me off the pavement and bring me home when I can’t move.  I’m quite sure he won’t come to get me.

Fun things like that will trigger what’s called a “fibro flare” where you’re down for a while.  That bit last fall had me in bed from the last week of August until the week before Christmas.  I managed to drag myself out to pick up groceries that were pre-ordered.  I’d come home, put the cold stuff away and go right back to bed because expending that energy made things worse and not better.

I do have access to, what I refer to as the handicripple bus.  They will pick me up at my home and take me to where I need to go, BUT I have to schedule it a week in advance.   There are days when I have difficulty going from the bedroom to the kitchen and back.  I keep instant, craptastic food on hand so I can eat on those days because I can’t stand and cook for myself.   And all of it does wonders for my weight.

I’ve told the doctor this, but then he gives me a similar look to the kid above (you know, the one that says I’m paying you lip service and not going to do a damn thing for you) and assures me that exercise really is the best way to lessen fibro pain.  I think I’m going to send him a link to this post, maybe then he’ll get it.  I doubt it though.

All I can say is thank God for my sense of humor because my funny bone is the only one that doesn’t hurt.  That’s what’s helped me realize that my life has turned into an elephant sandwich.  You do know how to eat an elephant, right?  One bite at a time.  I do what I can do, I don’t do what I can’t, and I’ve become rather adept at doing arts and crafts in bed.

I know a number of other people with similar conditions and it doesn’t matter where we live, who we know, how old we are, or anything else because we all live the same lives.  We can’t just get up and go because our “get up and go” got up and went a while ago.

Showering sometimes requires the use of a shower chair and thank the gods for dry shampoo and hats because just because you have the chair doesn’t mean you can raise your arms and keep them up to wash your hair.  And we’re tired all of the time, but we don’t generally sleep a lot.

If you know someone in this situation and you want to help, here are some suggestions.

      • Go with us shopping, then help us put the groceries away so they’re not sitting on the floor for a week after you leave.
      • Offering to fold/hang up the laundry is like Christmas in July!
      • Show up with a couple of containers of leftovers and stick them in our freezer.  Then make a big deal about how you made too much and were tired of eating it yourself so we have to help,  instead of drawing attention to our curiously large collection of ramen and our lack of skin tone from our diet of rice noodles and darkness.
      • And if you spontaneously happen to ask where I keep my vacuum and start hitting the living room, I promise, you will be mentioned in my will.

 

{{{hugs}}}
Maggie  

Stop Making Excuses, They’re Not Babies!

“He’s just a little boy…” MY ASS

Especially for us older folks, think back to what you were doing and what you got away with before the age of 16. Saying what he did, it’s no different than saying “I’m going to build a bomb and blow up the school”.

I use that example specifically, because a kid I went to school with (I was in 10th with his sister, he was in 9th), blew off most of his hand while building a pipe bomb to blow up the math building because the teacher ruined his perfect 4.0 and gave him a B. This is before the video games, before the mass shootings, before YouTube, before public access to the Internet, Jackass movies, or anything else you want to point a finger at.  This happened 38 years ago.

I knew a lot of people who got away with a lot of shit back then (and since) and a few that got caught… including myself. I’m sure that if this exact situation would have happened with any of the other mass shooters, their parents would be saying the same damned thing.

And if he is just blowing smoke and making idol threats like that, he needs to be taught a fucking lesson because clearly, it’s not going to be taught by you. How many times have we seen kids committing suicide only to find out that they were getting messages from others telling them to kill themselves because they’re worthless, etc?  And then to have no consequences?  I’m sorry, they’re not babies.

How many 15-year-old young adults (because that’s what they are) have already had sex? How many already have children?? Clearly, they’re not babies and have to live with the consequences of their actions, so why shouldn’t a kid who’s threatening to shoot up his school with an M-16?

Our job as parents is to raise functional adults.  Period.  The quicker people get their heads out of their asses and recognize the responsibility that they volunteered for, the better off this entire country will be.  No more “they’re just children…”, “kids will be kids” or “boys will be boys”.  These are excuses for bad behavior, and if you are making these excuses for your offspring then clearly you’re not doing your job right.  There are three stages of human development, and only three.  They are infants, toddlers, and adults-in-training. 

Everything they are taught… at home, in school, or by the media (TV, Internet, games, social networks, etc), shape who they will be and how they will be as adults.  Our job as parents and mentors, is to teach them, in a safe environment where they can fail and learn from it.  Evaluate what they did wrong, change/adjust your methodology, and try again . 

“For every action there is an equal and opposite reaction” is not just Newton’s Third Law of Physics, it’s life.  Don’t throw a punch with anything less than the expectation of getting punched back, or suspended, or arrested, or whatever.  Everything in life has consequences, some good, some bad, but to let a child grow and learn that they’re immune from consequences is not only irresponsible, it’s dangerous, and it can kill.

Maggie  

 

Suicide Needs its own first aid kit

American Foundation for Suicide Prevention

Many of us have been there or know someone who has.  In the US, the national average for suicide is 1.6%, of that there is 5-10% in the gay community, and in the Trans community it’s 42%.

Suicide Prevention Kit
This is a great article listing 18 items to keep on hand that can keep you from sliding further down to the dark side, until you can climb back up again.

 

We, the LGBTQ community, only make up only 4.5% of the population, yet we account for 50% of the suicides. That should scare the shit out of anyone, in the community or not. Bottom line, it’s got to stop.

We know, sadly, that most of these stem from sources such as those in our environment, bullying, lack of acceptance, being outted, as well as organic issues like gender dysphoria, etc.  We need to be there, for ourselves and for our other Rainbow Tribe members.

If you or someone you know who has struggled with depression and suicidal thoughts, having these items, and knowing how they can help, could make the difference between being here and being gone. Lots of loved ones want to help, but don’t know how to. Here’s a great way to help.

 

{{{hugs}}}
Maggie


Don’t Censor The Books!

Next Sunday kicks off Banned Books Week (September 22-28, 2019). It’s an annual event celebrating the freedom to read. Typically held during the last week of September, it spotlights current and historical attempts to censor books in libraries and schools. It brings together the entire book community — librarians, booksellers, publishers, journalists, teachers, and readers of all types — in shared support of the freedom to seek and to express ideas, even those some consider unorthodox or unpopular.

Books can allow you to travel without taking a step.  Books can allow you to meet people who were gone before you came to be.  Books can tell you about the past and how to navigate your future.  There are so many books because there are so many different interests.  If a book doesn’t appeal to you, that doesn’t mean that someone else shouldn’t be allowed to read it.

Spend this week thinking about it, so next week you can educate others and find out how to prevent this from happening.

Maggie 

Congratulations, But We’re Not There Yet

(Republished from Sept 2015)

Over the years, we’ve seen a lot of progressive changes here in America. While some show us just how far we’ve come, others let us know just how far we still need to go.  I was reading the latest piece here on The Kinfolk Kollective (brilliant writer btw, check her out) about Viola Davis and the nonsense (read bullshit) that ensued.

While I did not watch the awards, I saw the immediate spreading the joyous news of Viola Davis’ well deserved win on social media.  I think she’s an incredibly talented actor and I was very happy that she received her due in this well earned recognition.

LOS ANGELES, CA - SEPTEMBER 20:  Actress Viola Davis accepts Outstanding Lead Actress in a Drama Series award for 'How to Get Away with Murder' onstage during the 67th Annual Primetime Emmy Awards at Microsoft Theater on September 20, 2015 in Los Angeles, California.  (Photo by Kevin Winter/Getty Images)
LOS ANGELES, CA – SEPTEMBER 20: Actress Viola Davis accepts Outstanding Lead Actress in a Drama Series award for ‘How to Get Away with Murder’ onstage during the 67th Annual Primetime Emmy Awards at Microsoft Theater on September 20, 2015 in Los Angeles, California. (Photo by Kevin Winter/Getty Images)

Later I saw her speech, along with the very short and spread out list of other firsts and I was saddened to realize how little progress we’ve made in this area. To be honest, since I’m not a fan of the awards shows or their history I had no idea until this moment how far behind we were in this arena.

I remember seeing Halle Berry’s acceptance speech in my younger years thinking “cool, we’re there” and being completely oblivious to the fact that we are so far from it in this vein. Viola really hit the nail on the head when she pointed out you can’t win awards for parts not written. It’s a simple problem with a seemingly simple solution.  Right?

But of course no one can have their 15 seconds forget 15 minutes, in the sun before critics and assholes feel the need to tear people down with their own Ignorance.  This phenomenon was never more apparent than when a Tweet by an unnamed white actress (only because I refuse to offer any publicity with her name attached) who felt that Viola should have allowed someone else to write her speech for her. Are you kidding me?

So here we finally have the first African-American woman in this country to win an Emmy for Best Actress in a Drama, and this person felt, either out of jealousy of the win or personal discomfort because it didn’t align with her life of privilege, that it should have been censored or desensitized for those who prefer to speak out of their asses because their heads are buried deeply in the sand.

If I can offer a brief but meaningful segue  – One of my favorite movies is A Time to Kill starring Matthew McConaughey, Sandra Bullock and the ever powerful Samuel L. Jackson. The 1996 movie is based on the book of the same name by John Grisham, and is a story told from the defence attorney’s perspective as he digs deep to defend his client (Samuel L. Jackson) accused of murder after killing the men who repeatedly and brutally assaulted his young daughter.  McConaughey’s closing speech as Southern defense attorney Jake Brigance is one that will stop your heart and give you the deepest understanding of racial divide that you never saw coming. If you haven’t seen it, I urge you to watch it here.

After you regain your composure, feel free to join in the singing “Everyone’s a Little Bit Racist” from the Broadway musical Avenue Q and be sure to invite and include almost everyone you’ve ever known to join you in the chorus. There’s no shame in realizing that down deep you have some racially disparaging leanings at your core.  Of course you couldn’t.  You didn’t realized that you’ve been groomed this way from birth and while you may wash away some of it, there’s a couple of places you didn’t know were even there.

American society historically has been very racist and it didn’t stop with the end of the Civil War. In fact, slavery didn’t even end with the war. If you’re not familiar with Juneteenth look it up.  Don’t be surprised if you’re not familiar with it. It’s an event that is not taught in schools.  Why?  I don’t know.

I didn’t learn about the racially motivated Internment Camps to restrict the freedoms of Japanese-Americans during World War II either.  We learned a fraction of the relocation and atrocities committed against Native Americans by white settlers and Americans, too grievous a list to reference here.  Then again until the casinos opened, most folks thought that Native Americans were more historical figures than living peoples.  Out of sight, out of mind.  I guess that’s what that actress was hoping for with her tweets.

American History books would have us believe that this country was settled in harmony with only a few gunfights, a really cool railroad, the creation of the pony express and some really funny clothes and mustaches, then a few battles as part of the Civil War and once the war was over, we all continued living together happily until the 1950’s when we became a society divided again (for some unknown reason that nobody remembers I’m sure…) leading to Rosa Parks being the catalyst for the Civil Rights Movement with the Montgomery Bus Boycott.

Every generation does a little bit better, but we have to strive for it to keep progressing as parents, as industry, as a society, as a country.  Dr King said it best in his historic I Have A Dream speech “I look to a day when people will not be judged by the color of their skin, but by the content of their character”.  While I have always been moved by, believed in and agreed with that sentiment, we need to remember it just as much now as on that historic day in August 1963 on the the steps of the Lincoln Memorial.

I am constantly judged by those who see me as a caucasian woman, when the reality is that I am a genderfluid individual who only racially identifies as human, formerly married to an Afro-Cuban man for 10 years (which was illegal within my own lifetime btw) and is someone who has family and friends in every color of the rainbow and every position along the gender spectrum.   That’s not to say I’m not free of prejudice, not even close.  What it means that race and gender are not my identity nor is it my sole scope of experience for viewing the world around me; and as I recognize these flaws within myself, that awareness allows me to target it for removal like radiation directed toward cancer cells.. but only if I choose to do so.

Hate is a cancer of the human soul and prejudice is only one of its symptoms.  As we’ve seen in the past year racially motivated crime at an all-time visibility.  Understand that because of our changes in technology, these injustices are more visible than ever before, and with it comes the demand for accountability and change.

Please recognize that these are far from the only injustices that are occurring.  Young vets coming back are dealing with having to fight not only for their earned benefits but the continuing the fight they’d thought they’d left being as it haunts them constantly, creating an unprecedented veteran suicide reaching record numbers that this country has never seen before.

Transgender individuals, both adult and youths are assaulted and murdered daily, make up a majority of the homeless population as backs are turned on them at every turn and maintain a suicide rate of over 40%.  These two things in particular you don’t see on mainstream news because they don’t feed the fires of racial tensions and controversy, instead they breed empathy and compassion.  That doesn’t sell advertising.

The honest truth of the matter is that it’s going to take many more generations of Americans to water down and weed out experiences known as daily reality for many, many people in this nation both past and present, but it takes work, and a lot of it.  There is no room for complacency, the old adage is true “if you’re not part of the solution, you’re part of the problem”.

We as a nation and a society need to be proactive in repairing the current wounds and old scars of injustice for ALL of our citizens, not just the majority and the underserved need to be sought out.  Trust needs to be built, that’s the hardest part, and the nightly news makes sure to work against that because that’s how they get viewers and sell advertising.

So please look to the disparity around you and know that you can be the catalyst for change.  Compassion and empathy can make the difference in whether someone continues living or chooses dying.  Never forget that Rosa Parks wasn’t some visionary radical, she was a woman tired from a long day at work whose feet hurt.  Even the smallest pebbles can create the biggest ripples, you can be a superhero, all you have to do is use your powers for good.

{{{hugs}}}

Maggie

PTSD Support

PTSD Sucks is the understatement of the year. I wish there was a word that would relay just how bad it is.

I’ve been dealing with PTSD for going on 26 years now and I know many others who suffer with it as well. I applaud the spirit of this post, but for most of us this isn’t how we need help.

First and foremost we need people to understand what it is. We’re not “overly sensitive”, “crybabies”, “special snowflakes” or any other term that gets used to diminish the horror we deal with regularly.

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Believe me when I say that I really wish I could “just get over it”. I’ve learned to accept that this is my life, and that there are times when this will be triggered and out of my control. The best I can do is to continually remind myself that this is a cycle and cycles pass…well, until the next cycle is triggered.

As I learn what things will trigger it I can attempt to avoid them, but there’s no getting away from it unless I want to live in a bubble by myself with no tv, Internet, flashing lights, loud sounds, certain smells, fireworks…..

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We aren’t all triggered the same way either, it’s personal, unique, just as unique as the trauma(s) that we have all suffered as individuals. If you really want to help, please ask us if we can help you understand what we’re going through then be willing to listen and learn.

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One of the biggest things you can do for us is as simple as being our “bodyguard”. To have someone that we know we can trust, really trust, take over for us while we can’t think or function in the moment, to be a buffer to keep the rest of what’s happening away from us and get us out of that situation. Knowing that we can depend on you for that is a gift unlike any other. But please don’t jump in and do this without having this understanding with us first or you could make things exponentially worse for us even though you don’t mean to do anything other than help us.

PTSD doesn’t discriminate, men, women, kids, young and old, civilian and military. It’s the result of being in a situation out of your control and your brain decides that you can’t handle anymore and the slightest thing that reminds your brain (not even you consciously) of what happened before will set off a myriad of different things…night terrors, flash backs, panic attacks making you feel in that very moment that you are going to die right there and then. I wouldn’t wish this on my enemies (and only one ex-husband).

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You may not be able to empathize with what we go through, but accepting the fact that this is what we go through, without judging us or our trauma is huge. There’s nothing worse than opening up and sharing this part of yourself with another person only to be told that you’ve been through worse or that happened to so & so and they don’t have a problem with it doesn’t help, in fact it makes it worse. So thanks for being willing to help and thank you for recognizing that what I go through is very real for me, even if it doesn’t happen to others.

How do you sleep at night?

Fox News Host Says We Shouldn’t Care About Border Separation Because “These Aren’t Our Kids”

I’m going to say this one time. If this is how you feel… Unfriend me. Block me. Lose my number. Forget my name. Remove any memory of me from your brain. Just leave.

In a segment of Fox and Friends, Fox News host Brian Kilmeade defended white nationalism and Trump’s family separation policy by claiming that “those aren’t our kids, and it’s not like Trump was doing this to the people of Idaho or Texas”.

Yes, really.

If this is how you feel, and these are the actions that you support and endorse our “president” for, you are a vile, reprehensible, disgusting, poor excuse of a human being. You don’t deserve friends, you don’t deserve a family, you don’t deserve children, you don’t even deserve so much as a damned goldfish.

I am embarrassed, disgusted and nauseated that not only are you my fellow countryman but that you represent this country and it’s culture to others around the globe.

And don’t you DARE utter the words “I’m a Christian”. Hell is too good for you.

America is on the wrong side of history and I am ashamed.

My virtual gallery, combined with personal ramblings & opinions, ideas, food and DIY

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