Ain’t No Time For That! Mental Spiral

My broken brain decides to choose the absolute worst time to melt down. Is there ever a good time though? When deadlines are looming and paperwork is piling and no one else can take the task seems like a good time as any, right?

So I FINALLY got approved for 3 hours of week home help to help with tasks I’m having difficulty with. Vacuuming, changing my sheets, washing my bathtub, meal prep. Only took several years of asking and a call to my politician to get them to finally sign me up for a service I qualify for. SMH. At least that will take the pressure off a tiny bit. What I really need is an administrative assistant to organize my life and help with the paperwork and keeping on task. Maybe that could be included in my hours, not really quite sure. I know the lady doing my qualifications was shocked with a household of 5 people, I have no one to help me. I have a disabled teen, a 12 year old that does more than anyone else, a husband that works more than 6 days a week and runs ragged on his hours off and a mother that spends her time hiding in the basement and really only comes out to ask what’s for dinner. I’m broken.

And now as deadlines are looming and my teen is transitioning to adulthood and piles of paperwork come in for his disability, ssi, home supports, services, VA dependency, health insurance dependency, and suddenly my daughter wanting to homeschool and the loads of work involved with that, not to mention the stacks of all the other tasks undone, waiting for completion or even simply looked at and the pile grows and grows and grows. I’m drowning. No time to spiral! No time to check out and take care of myself. No help. Just simply, ain’t no time for that….

Euthanasia

I recently read an article from Canada about a 20 year old male suffering from an unknown disease that is debilitatingly painful to him. He’s seeking euthanasia, legally allowed in Canada. This article hit close to home. I’ve heard that request before. I’ve heard it from my own son. I can empathize and relate to what that young man is feeling and I can only imagine the pain his parents, if present is his life, must be going through. Our medical system is failing so many of us and way too many are suffering from undiagnosed diseased, often dismissed when too complicated of a case for doctors to deal with.

Growing up, I use to think if you had a health issue, you simply went to the doctor to get it ‘fixed.’ I later learned, even using the word ‘fixed’ was an irritation to doctors. They sent me to the shrink. How was I to know that the medical system couldn’t ‘fix’ people? They simply cover up symptoms for most disorders and only have a basic knowledge in common conditions. They’re great for emergency care but not so much for complex health issues. I wasn’t shocked to read that on average it can take 10 to 20 years for many people to get a diagnosis for a rare disease. Some never do. After experiencing my own failures with the system and suffering 22 years, I know the frustration patients suffer. I know that many doctors will simply pass the buck, sending you to someone else when they can’t give an easy answer and that buck can keep on going till they simply label you with mental health and neglect the patient.

We use to treat patients with chronic pain, counting pain as an important issue to ones quality of life but somewhere along the way, the pendulum swung too far in the wrong direction and now too many are left with no medicine to treat their pain. Too many are left with a dosage inadequate to give a person some quality of life and the ability to function. When a person is suffering, all options should be on the table. Quality over quantity and addiction be damned. FYI, the real percentage of addiction from prescription medications is quite low, less than 3% but somewhere along the way, those numbers got overinflated and anti-opioid zealots led the charge, damaging the reputation of a good medication that’s given so many a quality of life worth living. That’s an article in and of itself. I’m left wondering if the poor kid in Canada is being left to suffer over ‘fear of addiction’ leading him to make that choice to end his life. How did we come to this? Suicide rates skyrocketed when the CDC ‘guidelines’ came out and patients were pushed out of pain management, dropped from being able to take a medication that gave them the ability to function. Drug overdoses increased as some patients took to the streets in sheer agony over untreated pain. Suffering from severe chronic pain myself, I can’t blame them. What life is there if it’s nothing but suffering?

I think of my own son’s pleas to let him go. My goal to get him to adulthood in hopes of buying time to find the answer to what he suffers and in hopes of finding a treatment that can give him some kind of quality of life. But our system is broken. Months to years waits to see a doctor to get passed off to another and the wait starting all over again. To trial a drug that causes issues and no relief only to wait months longer to do it all again. This isn’t the life my son wants to live. He hates the medical system and I can’t blame him. I hate it too. It’s failed us on so many levels. Next month, he’ll be an adult…

I have spent 2 decades trying to figure out my own health issues. TWO DECADES. The last seven years being disabled and trying to do anything while disabled is like trying to swim through quicksand covered in mosquito’s with flashing lights and a million sounds pounding in your head all at once. Focus! With the progress in DNA and the ability to purchase access to our own genomes, I have spent years pouring through everything I can in hopes of getting put in the right direction in my search. With the cost of whole genome testing finally being within reach, I was able to get testing done on me and my kids at the same time I finally, after all these years, got accepted into genetics. So while I wait in hopes of insurance approval for whole exome sequencing, I’ve already purchased and received me and the kids genomes. I’ve had to learn as much as I can on my own. I found the pathogenic variant for my own disease my blood showed signs of. It was confirmed by the doctors but it’s likely not THE disease that causing my neuromuscular disorder and that of my kids. So I keep searching.

I thought for sure what my kids are battling is coming from me since we have the same symptoms. Imagine my shock when I finally found a pathogenic gene for a disease which my DNA does not contain. My kids are battling something else. Now the fear of finding out if they are also battling another disease, the one in which I’m dealing with. Likely one of my kids will have both as our muscle symptoms mirror each other. They already have several of the same conditions I do but to have a debilitating disease on top of what we’re already dealing with, my mind is blown. I’m shot. I’m buried in the quicksand that’s dragging me under and suffocating me. Fortunately, I found a free program to confirm the gene I found in my kids so we don’t have to wait for the doctors to finally get them in. They have 1 year left of their 2 year wait to be seen. Of course with this new information, I’m waiting to see if they’ll expedite it like they did mine when I found my own disease. Thinking about what I’m writing, that shows you our healthcare in a nutshell when the patient is left to investigate on their own. To figure everything out without the direction or guidance of a knowledgeable doctor because we’re lacking those. They rather label you with a mental health diagnosis and send you on your way.

What a broken system. I dream of winning the lottery so I can erase the debt that drowning us and finally be able to provide the support and care we need. To be able to fix our home so we can live in a space that’s upkept and geared towards our needs. To be able to know I can provide for my children who will need that support. I feel so broken. How can I provide for their needs when I’m struggling to provide for my own? How can I financially support them as adults as when we’re barely making ends me now? Social security will never allow them to live on their own or even cover a fraction of their expenses. My life insurance would help. The thoughts that swim through my mind as I worry over our futures. Will my son choose euthanasia? Will we ever find a treatment that actually works? Will he ever have a quality of life worth living for? I’m here for my children. They are what keep me here. I can’t imagine living like this for another 20 years. My son looks at me and tells me that he only sees me getting worse, never better so why would he want to stick around and wait for his own life to crumble even more? He sees me struggle with pain, migraines so bad I rock back and forth and can’t even make it to the ER for treatment, the pain is too bad. The dizziness that keeps me reclined in my chair all day long. The pay back after a rare good day when I do what I can when I can but can never keep up while I continue to drown in the loads of paperwork and to do’s on my to do list. How do we survive? Is it worth surviving?

Who is there to even talk to about this? No one who doesn’t live in our shoes or in similar shoes can ever understand where we’re coming from, what we’re feeling. You can not even imagine the place we are at or what we go through. How can one give advice when they are blinded by their own experiences and have no experience or understanding of the daily struggle? It’s certainly broadened my own compassion and empathy for others who suffer with debilitating diseases. All options should be on the table for us. We need so many better programs and services for those in our shoes. Services the VA advertises but never offers or qualifies you even though technically, we should qualify. The rules stacked against us. It’s not as simple as people think. Would you ask a nonverbal autistic kid to tell a class a story? No? Why not? That’s like what those of us disabled are asked to do when trying to navigate a broken system and fill out piles of paperwork over and over and over again with no help or assistance while suffering from a broken brain, overwhelmed by the amount of paperwork, the pain of using your hands/wrists to write so much. The mental exhaustion just from thinking about it. Simply thinking about it, so burnt out that your brain shuts down and you just can’t. Sometimes I feel like it’s meant to be that way to weed us out of the system.

On top of all that, we’re dealing with my son’s small cannabis charge. A charge that shouldn’t even be a charge. His doctor recommended it. It helps him in several ways yet it’s illegal here. He’s not out drinking and driving, committing violence, stealing, causing harm, he’s simply medicating himself with the one of the few things that’s helped him and now they want to punish him for it. He’s autistic and the logic behind it doesn’t make sense to him or to me. I certainly don’t want him on opioids yet. I’d like to keep that as far out as possible due to the stigma and hell we go through just being on a simple drug that helps us function and reduces the pain. The DA wants to give him a few days of jail, 6 months supervised probation with drug testing and 20 hours community service. How is that helping him? He can’t even hold a job or finish school so how is he going to be able to do work in the community? Jail time for taking a medicine? Are they going to provide his medical care? Are they looking to keep him in the system? It’s not as easy as simply moving to a legal state. This isn’t black or white. This is very complex with multiple needs including caring for a family member dying of cancer. I also can’t just give up my own doctors who are at least treating me regardless of feeling like I’m undertreated, I can’t just up and move in this climate and expect to receive the same care elsewhere. I wish cannabis worked for me like it works for my son, but it just doesn’t and I don’t like the feeling like I did back when I was young.

On top of that, we’re fighting with our HOA who agreed to release us from the HOA by getting the subdivision the ability to vote on the issue and suddenly, they backpaddled saying they never agreed to that even though I have the emails stating they did. My contact with the HOA is no longer there so now they’re pulling this on me and suddenly requiring the prior fees, thousands of dollars, that were waived previously and now they suddenly say we owe the bill. I have to find an attorney to deal with this issue but when am I to find the time or the money when my kids and our health takes up every single waking moment and I have no real help with any of it. It just keeps piling on and piling on and suddenly euthanasia is looking appealing. But I can’t leave my kids. But I’m not much help to them either, or at least it feels that way.

People like to judge while sitting on their high horse but from where I’m reclining, all I see are bitter people without compassion and understanding who complain but offer nothing. No, we’re not a typical normal family. We’re disabled by rare disease and that impacts every bit of our lives. What might work for you, won’t work for us. I’m tired of people trying to fit a square peg into a round hole. It doesn’t fit and no amount of moving it around will fix that. Maybe it wouldn’t be as bad if just one of us were disabled. But we didn’t get that straw! We got all the short straws. I use to have it all and I appreciated that life. Now I’m struggling to hold on. I’d take it all if my kids didn’t suffer but I didn’t get that life. And yes, I ask, why me? Why us? But I can’t change anything. It is what it is but it’s hard to make lemonade when you hear your kids crying in pain.

The Edge of Darkness

Living day to day, I struggle just to breath.

Trying to keep my calm. Praying for a long reprieve.

Balancing on the edge, each moment that I take.

Stomping down moments of regret, trying to avoid another mistake.

End it now or keep pressing on, decisions never far from thought.

Wishing for a peaceful existence, no demands or responsibilities fought.

For my shattered mind, so fragile, worn thin, how did I get to this place?

Always so strong, so determined, now weakness, an utter disgrace.

Body broken, weighed down, crippled in chronic pain.

Pushing myself, the frustration, no endurance, pushed in vain.

Questioning my existence, anger, fear, and doubt.

Stuck in a hole with no exit, surrounded by a withering drought.

The end so close, I feel it near. Do I reach out and grasp it’s hand?

Even the thought of that decision is simply too heavy a demand.

I think of their faces, my heart and soul, the pain that would never heal.

Do I put that burden upon them? A pain I never want them to feel.

But is my life worth keeping? A weight dragging everyone down.

Unable to care for myself, all the tasks piling up and I drown.

No one here to pass the torch to, everyone looking for me to depend on.

How can they even think it’s realistic, blinded by who I once was, she’s gone.

My hubby, exhausted, I see the burn out taking it’s toll.

He refuses to acknowledge, yet it seeps from his very soul.

My heart breaking in a million pieces, I feel helpless to my core.

Dreaming of winning the lottery, hire help, hire so much more.

Life’s journey, roads traveled, didn’t turn out as I’d expect.

How much damage one’s health can do, lacking services and respect.

No one chooses to be ill, dreams shattered and washed away.

Passions abandoned and unfinished, life in a state of decay.

Never quite enough to qualify for getting my needs met.

Like a dangled carrot above me, while being judged, but don’t fret.

Is it worth hanging on, listening to others scorn?

Sitting in their high castles, while my soul does nothing but mourn?

Cut them out from my existence, not worth the extra stress.

Neither willing to lend a hand, while I continue to regress.

Sitting in judgement seats while my body rots away.

And you wonder why I cut you out, a game I simply won’t play.

Every little bit of stress adds another layer deep.

Breaking down my body even faster while I weep.

My life now down to few, the only ones that matter.

Do I continue to hold on, do I give in to the madhatter?

Like a prophesy once told, left a simple talking head.

But even talking exhausts me, maybe better off if dead.

Dianne MacKay 6/24/2022

A Million Dollars… I can dream, right?

I’ve played the lottery so many times, I’ve lost count. Even if I only got 5 in a row for the million dollars, I’d be content. I’ve entered the HGTV dream home as often as I remember as well. Cash option or the house? What a tough decision but if I won it today, I’d choose the house! (I think!). A fresh start in a new state away from the nightmares of the last 7 years that have plagued me. And better medical! Just the idea of living so close to a good medical establishment is enough in and of itself. A place that understands rare disease, doctor’s who could actually give me and my children a treatment plan and care. Sigh…

The dream of simply being debt free. Free to use the money we have to handle our needs without struggling, without juggling, without having to pass up on things we could really use but can’t quite afford. So many things that could make our lives easier when battling disease but just out of reach for us. A main floor master bedroom with an appropriate bathroom, an office, a pool for hot days when our heat sensitivity flares up as simply entering the cool water lifts the heavy fatigue, dizziness and disorientation in a way nothing else can. I was recently told by my home physical therapist that I simply have two appropriate options for physical therapy that would be a benefit for me due to the conditions I suffer. Water therapy and a recumbent stationary bike. Two items I don’t have and to access them is difficult due to the energy it drains from me simply leaving my home, not to mention how driving is becoming an issue and hubby works too much to take me to my appointments.

To imagine being debt free and my husband being able to simple work a part time job to keep him stimulated while being available to the family to help with our medical needs. I dream. The loss of my career aspirations when I become disabled was a devastating blow, having spent over a decade working towards that goal and then having it slip through my fingers. I feel useless being unable to contribute. Even though I have my VA disability, it’s truly not enough to cover our needs. Imagine being debt free and being able to hire the help we desperately need. Someone to help me upkeep my home, change my bedding, clean my shower, tasks I actually once enjoyed as I’m a stress cleaner and neat freak and now unable to do those simple tasks. It saddens me. I miss my yard work, spending time in the garden. So much work I put into our last home when my condition was moderate and not quite so severe. Yet we gave up that home for extended families sake which ended up being one of the worst mistakes we made.

So many regrets. That home was much more fitting for my disabilities and contained all the touches, blood, sweat, and tears that I was able to put into it, doing my passion, a little here, a little there while still able at that time to at least do something I loved. The regret is a heavy burden I carry, unable to put those touches into our current home that isn’t nearly as set up to meet our needs and nothing left in me to give. If I won the lottery, I would hire someone to design the home in the way in which I imagined when I first set eyes upon it. But I’d still move. I’d probably keep it as an investment but just being able to see my ideas spring to life, even if from someone else’s hands, that would satisfy me. But the cold in our state was not something I thought I’d ever have to worry about.

The bitter cold, so crippling to my muscles. It’s cold about 8+ months out of the year here. That’s just over two months to be able to live my life with less pain and more movement before having to start the cycle all over again and stuck to my recliners and left to my writing, my support groups, and my anxiety over the tasks that never get done. I need a warmer climate. But I feel stuck. The money it costs to move to a whole new state, a new life, starting all over again, I just don’t have that kind of money. The thought depresses me as I know having better health care and living in a warmer climate might actually improve my function and abilities and options. I feel stuck.

I truly dream of buying one of those rectangular hot tubs with the hand rails and moving current. That would be the PERFECT way I could actually exercise my muscles so I don’t lose anymore than I already have. I tend to live at the waterpark during the summer, sitting on a tube in the lazy river and moving my legs as much as I can to maintain what’s left of them. But each year it gets more crowded and the tubes get less and less as I wait for an availability and then worry about having too many pushing people around me shoving me in wrong direction and hoping not to get hurt. It’s not the best environment for disabled people.

And my kids. My kids who need access to top specialists due to certain rare conditions that I would not trust just anyone to take care of. They’re my life. The services are extremely limited where I live. Our state is also behind on access to certain medicines legal in over half of our states but not in ours. A medicine that actually provides some relief and benefit and even suggested by my kids doctor as well as my own but yet, it’s not allowed. What is, isn’t enough. So once again, I feel stuck.

If only I had a million dollars. The ability to pay off every one of my debts, fix the house enough to either be sellable or rentable and the money to move to a place more suitable to our needs, our family. The funds that would then be available to hire the help we need, the devices and services we need, and to finally rest. It’s that time. Rest is needed, the ability to pass the torch and be taken care of. I’ve spent my whole life taking care of others but now it’s my time, my turn, to simply rest. I need rest.

Stages of Grief… A Rare Disease

After all these years.. So many years.. I’ve fought to be believed. I’ve fought for answers to what I believe is slowly killing me. Always blamed on my conditions that are not progressive, that don’t cause the symptoms that were bothering me most. Always told my blood looks good and there was nothing wrong with me. But my blood doesn’t always look good and yet they say otherwise.

I’ve been told I’m just overly anxious. I’ve been told I’m simply focusing on it too much and if I distract myself, I’ll feel better. I’ve been told it’s all in my head. Not even just by medical professionals, the people we’re supposed to trust and turn to for guidance, diagnoses, and direction but also by family of all people who should have my back the most. Being called a hypochondriac, always thinking I’m dying or I have this or that. Being told I’m faking. Being told I’m scamming the system. Having others talk about me behind my back instead of coming together to support and help me. That’s very damaging.

Now imagine going through that for so many years. So many years the damage that builds up inside. PTSD from seeking help and being cast aside. Questioning your own sanity and your own self asking if it’s truly possible I was simply imagining the torment my body is going through. You can not imagine the hell my mind was put through. You simply can not imagine… unless you too have been through it.

And then one day, 22 years later. #22 for those in the know. TWENTY TWO YEARS later I get some answers. It’s not in my head. It’s not fake. It’s not anxiety, somatic symptom disorder, being overly anxious, a hypochondriac, a scammer of the system, or attention seeker. I have a REAL DISEASE. Not only a real disease but a super rare disease. About 1 in 200,000 people. Not only a rare disease but a debilitating disease. Not only a debilitating disease but a fatal disease. I have a REAL disease. And it pains me even to say that knowing many suffer from fibro and ME/CFS just like I do but we are not treated like patients with a real disease or taken seriously when we’re falling apart and suffering in so much pain and disability. They are real too, likely a collection to explain a disease simply being underdiagnosed and ignored when basic labs are normal because doctors don’t know how to look beyond the narrow box in which they seek to fit everyone.

I find myself going through the stages of grief. You’d think I’d feel elated. Vindicated, justice at last but oddly enough, I find myself soaked in grief, in shock, anger and bitterness over all the time wasted. All the time being put through hell, being bashed, emotionally abused, and mistreated and allowed to progress so badly there is no coming back from this. My body is damaged. Had they simply listened when I first complained. Had they only helped me when I told them that exertion is making me more ill, that I needed help! Both medically and at home as I am dying and I feel it in every cell of my body but no help came. Because they didn’t believe. On top of that insurance and the VA rules are so contradictory and on paper offer so much of what people need but they dangle it on a string above our heads but simply out of reach of us.

And if I do ever finally get granted the funds I need to pay for the help I’ve been asking for, do you really think I’d turn around and pay those who’ve denied me the help I’ve been asking for all this time but never truly given it? Only to help when paid? I rather hire a stranger off the street. The pain is so deep. How do I ever recover from that? I want to look each person in the eye who ever denied me, gaslighted me, and blamed mental health and tell them how truly ignorant they are, how truly wrong they were. They are a danger to others if they ever think it’s ok to allow someone to suffer as much as I have suffered and not do their jobs and help me.

I’m still bouncing between shock, grief, and anger while I process the news I’ve been given. To validate the symptoms I’ve been battling for so long, the progression, the pain… I’ve been broken down mentally by the exhaustion of it all, to the point that simple stress causes paralysis and pain. Apparently, that’s a real thing with not only my disease but other diseases that affect the brain as well. So if I tell you that I don’t need the stress in my life, I don’t want to argue or waste my time on the stupid shit and you choose to continue it, you obviously do not care for my health and wellbeing. You are part of the problem. You are part of the progression of my disease.

If you truly cared, don’t you think you’d ask me questions about what I’m dealing with? Wouldn’t you want to know more about the disease I’ve been finally diagnosed with after twenty two years? Wouldn’t you be shocked with me that my disease can be fatal and my numbers cut short? Where is your compassion and concern? How about the fear of whether I’ve passed this down to my own children?! Something that literally paralyzes me and keeps me up at night as I wait this slow snails pace of a medical system to get my children tested so we know what our future holds. I’d take it all from them if I could.

How can I not feel the depths of despair and depression with everything I’m going through right now? That’s a tough pill for anyone to swallow. All I feel is loss. I don’t want to swallow this pill. I’m tired of pills. I’m just very tired.

The Years Go By… Rare Disease

                                        The Years Go By…..

I see a doctor,

I’m in pain

You look fine

Let’s try again

They run some tests

The labs look good

You’re in perfect health

But I don’t feel as I should

Can we look some more?

Somethings not right.

It’s probably just anxiety.

And thus begins my fight.

My mind is fine

It’s my body that’s broke

You made up your mind

Before I even spoke

There’s plenty of tests

That have never been run

You ran basic labs

Assumed nothing else can be done

So off I’m sent

Specialists galore

Once again basic labs

Not much to explore

You’ve checked off the norm

But I don’t fit in a box

See mental health

You’ll heal with those talks

Mental health said see Neuro

I’ve been there before

Pushed back in the box

Then shoved out the door

No one will listen

Somethings not right

It’s slowly progressive

I’m losing this fight

You’ve had ‘extensive tests’

And which would that be?

Only basic panels

No in-depth testing for me.

There’s mito, myopathy

And dystrophy

You don’t present like the norm

What norm? Can’t you see?

Adult onset is different

It’s misunderstood

You assume we should fit

We would if we could.

The literature’s outdated

The training is slim

No time to read studies

Let’s just blame them.

The kids showing signs

The same as me

It’s all in my head?

How can that be?

There are so many tests

Yet to be done

I’ve asked many times

You think this is fun?

This is my life

It’s falling apart

You see mere moments

But not from the start.

I use to keep my house

Everything in order

Now it’s collecting dust

Feeling like a hoarder

I had meals on the table

The neighborhood mom

Now I struggle to stay upright

I’m losing my calm

I don’t build endurance

My muscles fatigue quick

Weakness is present

My body feels sick

My kidneys leak protein

My gut won’t absorb fats

Tachycardia is present

Low blood pressure my stats.

My stomach shows bleeding

Esophagus gets stuck

Small bowels with rare findings

Now sort through this muck!

I want answers for my health

I should have that right

This is the life that I live

This should not be a fight

Appointments take months

Just to be seen

Some specialist’s years out

The wait in between

The process is slow

It does no good

Healthcare’s messed up

It’s not as it should

Where are the centers?

For a comprehensive exam

With doctors of all specialties

Rare disorders their plan

Don’t judge a book by its cover

They say

Yet you’re doing just that

And I’m left to pay

I’m angry, I’m hurting

My life up in smoke

Disabled and broken

Pulled down by this yoke

I feel the progression

Slowly take hold

My limbs will lock up

If I’m feeling cold

Repetition paralysis

Also exists

There’s testing for that

I will insist!

Scoliosis, kyphosis,

A pelvic tilt

Can’t support my posture

My body will wilt.

Migraines, brain lesions

Double vision as well

This is my nightmare

I’m living in hell

Early onset cataracs

Bad vision at night

Super dry eyes

Surgery I might

Scaring in the lungs

Mitral valve prolapse

Shakey jelly legs

Ready to collapse

Chronic high cholesterol

Yet no weight on my frame

Plaque calcified in my arteries

That’s for the old, they claim

Bone inflammation,

Stress reactions they say

3 years in a wheelchair

For that I did pay.

One step from a fracture

Bilateral too

Explain that to me!

What should I do?

This is not normal

It all adds up

Where are the answers?

It’s filled my cup!

Hypermobile as well

Let me show you my tricks

My kid’s knee will dislocate

It’s not a simple fix

My list is long,

Some you’ve never heard

Knowledge is lacking

Training has not occurred

Myalgic encephalomyelitis

Can you pronounce that?

Dysautonomia as well

Your experience falls flat.

Epstein barr reactivated

My immune system shot

Low C3, still exploring

But Lupus it’s NOT.

Abnormal gait

My skeleton misaligned

Some bone abnormalities

Organ differences you’ll find

Occasional burst veins

Petechial spots on my skin

Inflammatory bowel disease

I just can’t win!

Numb leg for a year

Sunburn feel on my back

Stabbing toe pain

I wish that one, I lacked!

Bowel spasms that drop me

My bladder too

My esophagus joins that list

What do I do?

Fasciculations and spacisity

Muscle spasms and pain

Internal tremors for years

Yet they can’t explain?!

Hiatal hernia repair

My gallbladder out

Multiple cysts, necrotic appendix

What’s next? I shout

Let’s see, there’s the uterus, that’s gone,

rectocele times two

Interstitial cystitis,

Neurogenic too

Anemia, iron deficiency

Low sodium, low potassium

Low ALP, low CK, low BUN,

No answers, I’ve asked for them!

Low anion gap, low ferritin,

Low vitamin D

My numbers look beautiful

Nothing to see.

My labs were all normal

My CT too

Yet full of IBD

And you never knew

I told you I’m a zebra

I don’t present in the norm

No inflammation in my blood

Based on basic panels, your form.

There are other lab markers that exists

But you’re not in the know

Don’t blame my mind for your ignorance

healthcare is a shit show.

Send me to specialists

Who know rare disease

22 years I’ve been waiting

I’m really displeased

Takes 15 years on average

For those like me

To finally get answers

It’s a simple plea

Our system is broken

Too much time lost on blame

Their ignorance is speaking

When they play their basic game.

You don’t fit in their box

It must be your mind

Without truly looking

There’s nothing to find

How do you fight a system

When your crippled and done

The fatigue is daunting

Sensory overload won

Words coming out backwards

Your memory lacking

Assisted devices for everything

Once sharp now cracking

Brain fog is strong,

Simple things now hard

Held down by this body

My freedom is barred.

If not for me,

Then for my kids sake

What is going on?

This is not fake!

She’s taking advantage of the system

Hypochondria is strong!

She just wants pain meds

How badly they’re wrong.

Somatic symptom disorder

You’re thinking on it too much

It affects me nearly every moment

I’m pained by simple touch!

She’s simply an anxious mind

But it’s only here I get spun

All the gaslighting, accusations

PTSD is no fun!

I’ve been accused me of much

Your judgements off base

I’d love to see your response

If you suffered what I face!

But wait! There’s more! Should I go on?

Nystagmus, ataxia,

vertigo too

Thank God that’s less frequent.

Oh, emphysema! But that’s on you!

Endometriosis, Menorrhagia,

Bilateral labral tears

Gastritis, Bile duct dilation,

Severe abdominal pain in flares

Constant pain in my hips

Endless in my butt and thighs

Hurts to stand, to walk, or sit

What causes this pain to arise?

It’s too rare to exist,

The doctor does boast!

No, it’s not as rare as you think,

Just simply rarely diagnosed

                                                                                Dianne MacKay 4/2/22

Just Eat The Cookie and Die

It’s amazing to me how many people are willing to sacrifice others for a false sense of security, to make them feel safe. It’s even more amazing when it comes from someone in your own family who has had the time to know your life, your experience, your health issues, your story, and yet they still want you to eat the cookie that could potentially kill you, just to make them feel safe.

The cookie in question would be a cookie that you have a known allergy to, as well as a prior history of eating that cookie and having your health destroyed. Knowing there are many others like myself who have also eaten that cookie and had the same reaction and struggling just to live life with the myriad of conditions and health issues spurned by those damn cookies.

Those cookies destroyed my health. When trying to find out why, no one seemed to care. What makes my genes different? What made people like me respond in the way in which we did? There’s an obvious genetic component involved but no one wants to study the issue. Why? I can only assume, since the manufactures have no real liability, they have no real incentive to research the issue. Studies costs money. There are many many willing participants who’d love to be involved to see what makes us different so we can enjoy a safe cookie like everyone else but we’re the minority and I’ve since learned, we really don’t matter. No one wants to spend the money and they likely don’t want to admit that their cookies can cause that kind of harm in the first place.

For two decades, I’ve brought up these questions. I’ve asked medical personnel. I’ve been silenced, gaslit, and told correlation doesn’t equal causation… Let’s think about that last statement. Correlation doesn’t equal causation. Wow, can that apply to many things but in my cookie case, it almost always seems to apply. We know that only a small number of people have their injuries reported in the first place. This is fact. Even drug reactions are rarely reported, I’ve witnessed that many time. If these reactions are not being reported as they’re supposed to, then we don’t have a legitimate accurate database where we can see how many people had the exact same reaction and how that reaction grew over time. We miss the obvious, that many have had that same response and correlation is looking much more common than otherwise reported. Seeing those numbers would then, ethically prompt more research into the issue. Just like a black box warning applied to meds that were later deemed unsafe for a subset of the population. But cookie injury reporting is one of the least of all reported types of injuries. Again, is it the lack of liability? Why wouldn’t we want a safe alternative for those who can’t digest it?

In becoming injured by those infamous cookies, health declining and disabled, I have become the vulnerable. The vulnerable who can no longer eat of those cookies. It would be harmful to my health and since we don’t know what the mechanism is behind it, we have to assume it’s the entire cookie. Had they researched the issue, maybe we could have pinpointed something in it or understood the way in which my body processes those cookies but again, no one cared enough to investigate the issue. In addition, current cookies now contain an ingredient that I do have a known allergy to. And sadly, I was told by my own family member that I should eat it anyway. Aren’t they the ones who are supposed to eat the cookies to protect me? The ones who can’t? That’s the line we’ve been fed for generations yet that somehow suddenly doesn’t apply? Or is my family member just being toxic and selfish willing to sacrifice another for the impression of saving himself? That’s what catering to the ‘greater good’ does to people. It’s always at the expense of another and I just so found out, I am the other they’re willing to sacrifice. Doesn’t look good on this side of the fence.

Victim Impact Statement

My son’s case is next month and I’m already starting to stress about it. The case might not technically be in my name (my son’s case), but it IS against me. I plan on writing a victim impact statement as it was I who called 911 that day. It was I who followed my child’s crisis plan and picked up that phone. And it is I who am struggling with the aftermath of that ridiculous and mind blowing day that forever changed the way in which I view the local police department, crisis plans, and seeking medical help for my child. They have taught me to fear calling the police. They have taught me that a crisis plan is no more than an arrest plan. They have taught me that the police department values do not align with what they pretend it does and the juvenile justice system is no better.

I received a phone call a month after that 911 call to get an assist to drive my son to the ER (per his crisis plan). “Your son has a warrant out for his arrest,” she told me. I laughed. I thought it was a joke that is how far from reality I thought that call was. When she persisted, I told her she must have the wrong kid, what did my son ever do? They told me he assaulted a police officer….This is a felony charge… When the heck did this happen, as I knew that was completely impossible. My son is very polite with officers and he maintains himself to the best of his ability out in public. They advised me of the date this occurred and the only thing on the calendar for that day was the 911 call and ER visit. You have got to be kidding me… They charged him for melting down about going to the ER and not wanting to go willingly. Of course he didn’t, that why I called in the first place. He was committing self harm and melting down over being told he had to go to the ER for medical clearance which meant blood work. One of his biggest fears is needles and medical procedures. In fact he now has PTSD over this and anything medical related.

Would you charge a child for throwing a temper tantrum over getting a shot? What if that child actually kicked and thrashed and threw things? Pure fear radiating from the kid as he screams bloody murder and fights off any attempt to approach. No, that wasn’t my son that day. My son was verbal, completely broke in the brain in that moment but never struck out at the officers, never kicked, never punched or headbutted, he simply refused to walk himself, yelled all kinds of unpleasant stuff and made a mouth motion as if he was going to bite them when they were restraining him on the ground for not walking willingly. Absolutely no physical harm was done to any officer. Do I like the words that came out of my kids mouth? Absolutely not. My son has austim, severe anxiety and depression and when he is angry or completely afraid, he reacts verbally. That’s how he copes. That’s how a lot of kids with autism or DMDD cope. Most of the time they save it for at home and do well in the public setting. My child was home, not out in the community.

The Meridian Police Department have partnered with CIT. CIT is a program that works with police departments all over the country to change their approach on mental health calls with our juveniles. They are a program to keep kids out of the juvenile justice system and rather direct them to the right mental health services in the community to avoid wasting time and money on charging kids that are more suitable to getting help and not crime related. This actually seems common sense but in Idaho, they lack simple laws and procedures that actually get people help and do the right thing for the community. Instead, they have been charging people and punishing them for not having their mental health crisis under control. Even with this program in place, AND training currently going on in Idaho on working with kids with autism, they failed to utilize their agreement with CIT and implement the very program they agreed to. Not once did they call after that fateful day and ask if my son needed help with services or direct me to the appropriate places. Instead, they charged him with a crime and are punishing not only him, but me as well.

The prosecutor in this case is actually likable and seems to have some common sense. After speaking with him about what happened, he immediate dropped the warrant but the charges were not dropped. At one of the hearings, he informed the judge that he may be dropping the felony charge and he sought to do so, but his supervisor refused to allow him to drop the charge. He would still have the misdemeanor charge of resisting but for some reason, she wants both charges to stay. I don’t understand that. I was told that they typically continue charges to make sure my son is getting the mental health services he needs. So why keep both charges on the table? Why hasn’t anyone bothered to call and see what services he is actually already receiving or to share any further services that may be out there? I feel like I’m simply being lied to. I believe the prosecutor believes what he told me but the actions of his supervisor and the department don’t align.

Is this really how Idaho wants treat it’s disabled population? A population less likely to be able to defend itself. Simply throw charges on a kid who has no prior violent charges, who’s simply struggling to live his life and be left alone and they want to label him a criminal and punish him for having a fear of needles and going to hospitals. Again, would we charge a 7 year old, 8, 9, 10… for fighting to avoid a shot? I know that’s happened many many times in hospitals throughout the country when a needle comes out. Do we charge all those kids for this? How is it that much different from charging a freshly turned 16 year old with autism who has a real and absolute fear to the point of PTSD? And yet, he absolutely didn’t hurt anyone. Mind Blown!

So I’d like to write a victim impact statement. I and my son are the victims. You can not imagine the amount of stress and anxiety this has put on us both. I am disabled and stress exacerbates my conditions. My flare has not died since it started shortly after that call. I’m not going to elaborate further into my own mental health stresses but this was seriously the icing on the cake. This has harmed my family. There is no greater good in this situation. There is no inadvertently helping my child in this situation. After speaking to other families who have gone through similar, the services offered in Idaho are the very same services he’s currently seeking/getting and utilizing the very same company to evaluate and direct. We’re already enrolled in it on our own. And don’t get me started on the lack of services for our kids in this state or the waitlist for services. It’s appalling. That would be an entirely new post all on it’s own.

I just can’t wrap my head around it all. I just don’t understand why this is happening. We need real change in Idaho. Common sense changes that actually help our children. More programs to be available to them and more staff to fulfill the long waitlists for the services they do offer. We need to stop charging our children with crimes for things that truly should not be called a crime when it’s something as simple as a medical assist call per the very crisis plan set up by the doctors and mental health community for our children. I now fear calling the police. I’m now jaded in my view of the department. I’m now jaded in my view of the juvenile justice system. I’m now a very stressed out mom fighting the system and praying that common sense will prevail and by some miracle, the felony will be dropped from his charges. In fact, all of it should be dropped. I shouldn’t have to choose between accepting a misdemeanor we don’t believe in or risk having him labeled as a felon for the rest of his life for simply calling 911 that day per his crisis plan. I just needed an assist to get him to the hospital. This is not justice.

We should never fear calling the Police during a crisis… Part 1: My Journey with Ada County Juvenile Justice and Meridian Police Dept.

We should never fear calling the police during a mental health crisis. But that is exactly what I now fear. I will never utilize there service that we pay for, ever again, no matter how bad it gets. They have failed me. The Ada County Juvenile Justice Department has lied to me and they are not there to help your children as they are proving that.

Around September of last year (2020), my son had a complete and utter meltdown. Covid has been rough on our kids, especially those with autism or other mental health issues. Due to my child’s depression, we have a crisis plan in the event it is needed. I’ve never needed it before. That night, I did. 

I simply needed the police or ambulance to transport my child to the ER. My child had volunteered to get help but when he found out they needed blood work, he lost it. He hates needles, it’s part of his autism anxiety. I was afraid of him hurting HIMSELF, so I made that call. My son did NOT want to go to the ER and I alerted the officers of his diagnoses and his fear and that he was not willing. They said they may have to restrain him if he refused to cooperate. There was no mention of anything beyond that. My son was transported to the hospital in restraints. 

One month later I received a call. My son had a warrant out for his arrest. He was being charged with a felony assault on a police officer and a misdemeanor resisting charge.  They are charging him for ‘attempting to bite’ the officer even though he didn’t cause any harm, he’s a small kid and they had him on the ground putting a body wrap around him. 

Though I managed to have the warrant removed AND the prosecutor was willing to drop the felony, his supervisor would not let him. We have trial in April. They said they would drop the felony if we pled to the misdemeanor. This to me seems like blackmail. Why should we plead guilty to any crime when we simply needed help during a mental health crisis? They said they charge kids to make sure they’re getting the proper help they need… yet not one phone call to see how he is doing. Not one phone call to share any information regarding services. They didn’t even ask if he was receiving any services!  How is this helping my son?  If they were really seeking to only charge to help, then why wouldn’t the supervisor allow the prosecutor to drop the heavier charge and work with the other charge that remains? Again, this shows they don’t have his mental health in mind but are seeking to punish my child and for a crime that could follow him for the rest of his life and for what??? For calling 911 to help us get him to the hospital… Never again.

I’m a disabled veteran who is in the process of seeking caregiver support due to my disabling condition. Stress exacerbates my health issues. This has certainly put a lot of stress on my shoulders and added more to our plates when it wasn’t even necessary. Not to mention my son could have a felony record for life if the judge determines he’s guilty.  There are no laws to protect my son. Where’s the common sense? 

My VA Surgery Nightmare; no wonder people get medical PTSD.

2017 VA Hospital

                                      My VA surgery nightmare

In February of 2017, I went to the VA to have surgery. This was my first-time having surgery at the Boise VA. Two procedures were being done. I was having a bladder hydrodistallation with a DMSO treatment with my urologist and having a Bartholin gland extraction.  Funny thing is, that Bartholin gland was supposed to have been removed many years ago (at military hospital) but when the pathology report came in, no gland was removed, only fatty and muscular tissue. That was a waste of my time and needless surgery/recovery as once again, the gland swelled back up and needed out.

I had no issue with either my urologist or gynecologist. They seemed knowledgeable and reputable. I went in the morning of my surgery and all was going well. The nursing staff at check in were great.  The anesthesiologist on the other hand, was a real piece of work. He was extremely standoffish and rude and made some kind of off hand comment to me that I can’t remember now but it was rude. My husband took note as well, so it wasn’t just me and he’s pretty giving.  So, under I go for my surgery to awake to a nightmare.

I woke up in extreme pain. What I want to make you aware of, is that I suffer chronic pain due to multiple medical conditions for which I’m on pain medications daily for. I know pain. I also know I’m slow to heal and have poor pain control after surgery, which has nothing to do with being on opioids but likely due to a connective tissue disease and having ME/CFS. This level of pain that I awoke to was beyond everyone of my prior experiences, including my abdominal surgeries. I’ve had about 8 surgeries and a handful of surgical procedures in the last 19 years so I know how my body responds. And yay me, more to come.

I found out my surgery was a bit tougher than they realized and I needed stitches four layers deep. The gland was deeply embedded. The only way I can describe my pain is, being on pain meds daily then getting cut open and having someone give you an injection of Narcan (I think this is the drug), eliminating any pain meds in my system. My entire body was flared up in pain and my nether regions were over a 10. The pain was so intense, I was speechless, gasping and frozen. The nurse was made aware of my extreme level of pain and went searching for the anesthesiologist. It seemed like hours, when in reality it was probably an hour which is unacceptable to me, but he finally showed up and said he was putting fentanyl in my IV line.  Again, no response. No decrease of pain, no edge taken off, nothing. Looking back, I seriously question whether or not I truly was given Narcan or whether or not someone at the VA (maybe the anesthesiologist) was skimming the pain meds. I know that’s a serious allegation (and a problem in healthcare), but I stand by the fact that something truly was going on. This was not a typical reaction for me and I’ve had multiple surgeries in my life.

I was hurting so damn bad that I refused to allow my hubby to come back to the recovery room when they offered to get him. I was actually terrified of his reaction if he saw me in that much pain. He can feel pretty helpless when I’m suffering and not seeing anyone helping me might set him off in ways I didn’t want to handle in those moments. I do have to say, the nurse accompanying me, was the absolute best nurse ever. He held my hand, whispered to me, comforted me, and felt absolutely terrible seeing me suffering. But his hands were tied. He saw them inject meds into my line and he did ask for more relief but no one wanted to order it. That man stayed by my side to comfort me until I moved off his floor. I truly need to look up his name and leave awesome reviews everywhere I can.

They ended up admitting me to the hospital overnight for pain control. This is typical for my abdominal surgeries, but not for this type of procedure. Having experienced multiple surgeries before, this level of pain was so much more intense than any I’ve ever experienced.

Another thing I noticed was bilateral abrasions on the back of my elbows, with the left side being pretty big. Again, I’ve had multiple surgeries and never in my life have I woken up to abrasions. How the hell did I get injured while put under???  They are supposed to treat my body with respect!! I counted on them to take care of me. How am I ever supposed to trust someone when I’m that helpless after going through an experience like this? They broke my trust. And it gets worse!!

I was put in a room and my husband finally came up to be with me. This was SIX hours after surgery. My husband was apparently very upset and had been left freaked out wondering why I wouldn’t let him with me. I regret that. At this point the medical staff set me up with a diluadid drip. I could push the button every ten minutes for pain relief. Apparently, it was set for 4mg(?) every four hours AFTER I complained that the 2mg was doing absolutely nothing.That was the only adjustment I received the entire time. On top of this, they did NOT give me my daily dosage of oxycodone to take by mouth or in my IV line.  This is some serious under medicating. If that were it alone, that’s bad enough. But I was not receiving any relief from my pain. And I’m in the hospital!!  I complained about this EVERY SINGLE TIME someone came into my room in addition to pushing the call button many times. My night was hell. I spent every ten minutes desperately pushing a button that entire night and not a damn bit of relief was given.  Not a wink of sleep.

I also needed help to the bathroom and no one came as it was excruciating to stand. My husband handled it while he was there but after he left I didn’t have help and I had to unhook myself and stumble over stuff to go relieve myself. My blinds were also left open after dark and I couldn’t reach to shut them and again, no one came to help me. I laid there, awake, the entire miserable night of hell. Not once did someone up my pain meds beyond the daytime increase to the 4mg (?) every four hours via those tiny doses in the that machine. I asked them flat out to call the doctor and to request more pain relief. By the way, I can’t take NSAIDS or aspirin so my options are limited. Rare metabolic mutation, fun times.  They offered me a Tylenol.

It wasn’t until the next day that things fell into place. I demanded to be released. I felt with my pain meds at home, I could, at this point, better medicate myself and control my pain, as I had my additional script ready via my PM doctor. I was fed up. Upon getting ready to discharge me and again making my complaints, they disconnected my pain pump and examined the machine. They also took out the entire bag of diluadid from the pump and commented, “We’re going to have to throw away this bag, looks like the pain pump was broken.”  I cannot describe to you the rage I felt in that moment. After they looked at my machine multiple times during the night, endless complaints of no pain relief, it took till me leaving to discover my pump was broken?

Again, I wonder about the authenticity of the over night staff. It’s not like they didn’t look at the machine on their visits with me. But they’d throw an entire bag of pain meds away? How do you not see that a machine is not working? Why didn’t they give me my normal meds in addition to the added relief from surgery? Why did they NOT call the on-call doctor like I asked them to get more pain relief? And how the hell did I get abrasions while sedated?! All of these little details and questions ran through my head over and over after I finally recovered.  And yes, I filed a complaint with patient advocate. Wait, let’s back that up, I called patient advocate and left two messages. Not one was returned to me. I left a review on the website and no one reached out. I spoke to my surgeon about this at my follow up and he notated it my complaint but nothing was done!

I requested copies of that night for my records. On top of all I went through, I was appalled to see multiple lies within my chart. “Sitting comfortably reading a book.” “Didn’t need assistance to the bathroom.” “Pain level of 4.” On and on they did NOT document my constant complaints. They did NOT call the doctor.  The did NOT take care of their patient who put their trust and life into their hands. They simply lazily wrote their notes to cover their shift but did not accurately reflect the truth. IF I was sitting at a Four level pain, why the hell did I complain the ENTIRE NIGHT?!!  If my pain pump was broken and I wasn’t getting my normal meds, HOW THE HELL COULD I BE AT A FOUR LEVEL PAIN at any point during my stay??!!  LIES. 

I will NEVER allow the Boise VA to put me under again. I will never trust them with my body or with my life. They never accounted for the abrasions, nor was it mentioned in my records after asking them about it. I was completely dismissed and disregarded at a very sensitive and painful time in my life.  And people wonder how patients get medical PTSD? This is exactly how. One of many ways as we are often dismissed as females with hysteria, anxiety, overly anxious, somatic symptom disorder, and more especially when battling chronic health issues.

To me, this was medical negligence. I’d also investigate the pain medication accounts and see if someone might be skimming the meds. This treatment was devastating to me and I have extreme anxiety over it. Sad thing is, I have more surgeries in my future, one very soon, and now they can add a heavy dose of anxiety meds to the list before hand and expect a serious discussion on pain relief BEFORE I ever step foot in a hospital for surgery ever again. This should have never happened.  This also should never have been ignored when I complained not just about the lack of pain relief, but broken equipment being used, abrasions to a patient’s body while unconscious, and LIES in a veteran’s medical records during that night of hell because after all, the machine was BROKEN. Should be proof enough that someone dropped the ball and someone fudged those records.

                                                                                                Dianne MacKay 8/26/19