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

Set Up For Failure; War on drugs and Mental Health

Our country needs to legalize or decriminalize drug use. This statement might seem pretty extreme but I’ve been thinking about it for a while and when you see the big picture, it’s the only way that makes sense. I’m debating starting a petition. What we need are people to actually read the reasoning behind that statement with an open mind and not with the mindset that people just want to use drugs. I don’t even use drugs. Keeping drug use as a crime against society causes harm and hinders people from seeking help.

Merriam-Webster states that a crime is an illegal act for someone could be punished by the government. Especially: a gross violation of the law. (1). But there is also a legal definition of crime that allows for prosecution for breaking a law. The legal definition per The Free Dictionary by Farlex states, “n. a violation of a law in which there is injury to the public or a member of the public and a term in jail or prison, and/or a fine as possible penalties.” (2). 

Also from them is this statement, “There is some sentiment for excluding from the “crime” category crimes without victims, such as consensual acts, or violations in which only the perpetrator is hurt or involved such as personal use of illegal drugs. (See: felonymisdemeanor).”

Typically, to be considered a legal crime, it must be a violation of law against another person or property of another person. With drug use, the crime is simply against oneself. There is no crime against another for simply using a substance. And yet, it is considered a crime. I believe we need to change that and I have good reason for feeling this way.

The ‘War on Drugs’ has been going on since the 70’s. They’ve had 50 years, FIFTY YEARS to perfect it and have failed miserably. The only thing this war on drugs has accomplished is making drug use illegal, stigmatized drug users, stigmatized legitimate patients using a proper medication to relieve pain due to some abuse by others, and creating large barriers to people seeking help both mentally and medically.

There are various types of drug users. Those who use recreationally like any other person who likes a nice drink on occasion to unwind, those who use to drown their troubles and hide their pain due to some internal or external conflict in life, and those who can’t seem to function without drug use who are the legitimate patients addicted to a substance. Those with addictions need extensive help and therapy to fight their addictions and live drug free. The recreational users don’t need any kind of therapy as they use just like a person who drinks on occasion. Those who use for drowning their troubles likely need therapy to help manage the issues that drive them use in the first place.

With drugs being criminalized, seeking help places the individual in a very sticky situation where their very lives are at risk simply for seeking help. If they have children, their children can be taken from them. If they have certain careers, their careers can be destroyed. Just the fact of use being illegal sets barriers against those seeking help. The stigma as well keeps people quiet. I’m certain there is a large portion of users who desire help but the fact that use is stigmatized and the fact that use is illegal keeps them from seeking the help they need. There is also fallout that affects those who don’t even use illegal drugs who are looking for help. A ripple effect that spreads far and wide touching those who don’t even use illicit substances yet use legal medications that some have chosen to abuse, harming many pain patients who simply want to function in life and yet they are thrown into the stigma with those who use illegally thanks to misinformation campaigns, the media, and organizations seeking to demonize the use of opioids regardless of the reason for using them.

I would be remiss without mentioning the stigma of mental health which is often linked closely to drug use though not all mental health issues lead to drug use. The stigma of having anxiety, depression and other mental health challenges is just another barrier to those who wish to seek help. We desperately need to break those stigma’s paving the way for those holding close to the vest their mental hardships that may simply need, talk therapy.

I absolutely believe that by legalizing or decriminalizing drugs, our war on drugs would be successful in a way it never has before. Why repeat the same mistakes over and over and over that achieves nothing but more harm. Stubbornness? Pride? Some kind of deeper ulterior motive? Whatever it may be, it’s not for the American people as we’re the ones that are suffering because of it.

The fact of the matter is, people WILL USE DRUGS. That will never change. There will always be someone either seeking to get high or seeking to drown their troubles in some kind of substance legal or otherwise. I’m pretty certain this is an established fact. We know that for some, drug use can lead to dirty needles, spreading of disease, unsavory behaviors, and harm against oneself. The person inside has issues. They need help to find the reason why they are seeking out the substance to begin with. I’m not referencing recreational users. They’re in a different playing field and having been around many growing up, they don’t need help no more than a person who drinks alcohol to unwind on weekends. They just chose a method that gives them a different feel than alcohol. But those seeking to numb their pain, physically or mentally, are the ones I’m referring to in this article, the ones who need real help to keep them from spiraling further and to put them on the road to recovery. The way our society is set up, keeping drugs illegal is a barrier to receiving help.

Our country has slowly added some changes to help with some of the issues that are caused by illicit drug use, such as offering clean needles which is a good thing as we know, they’re going to use regardless so at least we can help decrease the spread of disease if their route of choice is the needle. Some countries have legalized or decriminalized the use of drugs and have shown much success in doing so. Maybe we can follow their lead.

By legalizing or decriminalizing drugs, we can lift the stigma attached to it. There are a lot of fears for someone to admit to drug use. For one, it’s illegal!! How can you expect people to get help if they have to admit to doing something illegal? That alone is a huge barrier for those who do want to seek help! If they have children, they fear losing their children. If they have a good career, they fear losing that career. So many reasons NOT to seek help all because of the legality involved and the record it will leave on the person for simply admitting it.

Imagine having your permanent record marked as a drug user then that person seeking medical help after an injury or for chronic pain. Now because of that label, that person is not only treated differently in the medical establishment but they can also be denied pain relief!! I’ve spoken to people that have had this happen. I also know a family of someone who was mislabeled as an addict who went through an extremely painful surgery and then was denied proper pain relief. He killed himself. Killed himself!!! And even sadder, he never misused his medications, he simply used a medication off-label for chronic pain that is given to those who abuse drugs, even though he never abused them. This very stigma smeared his permanent record, labeled him as an addict and then led to him being denied proper pain management. This also shows that those who do abuse drugs may not ever have proper pain management all for seeking help or being labeled as an addict. They are treated differently in the medical system. And people wonder why some refuse to seek help.

Legalizing can rid a huge portion of this problem. In time, the stigma will fade and people can simply reach out for help if they find themselves in trouble.

What about legitimate pain patients? Many of us, myself included, use opioids legally and yet there are people out there that abuse them with and without a legitimate prescription though studies have shown most illicit users don’t even have a legitimate prescription for the drug they are abusing so it’s not legal prescriptions causing the bulk of this particular drug abuse but a heavy handed organization and campaign has ruled with an iron fist to not only heavily tighten the availability of pain medications but to reduce the milligrams needed by even legitimate pain patients as if it’s one size fits all and assuming that after a certain dose, harm will be caused. Never in the field of medicine have I seen a drug that flat out limits the maximum dosage allowed when each individual is a person that metabolizes a medication differently and the reason why various dosages are created and prescribed. Tolerance to any substance can be built causing a need for higher dosages of ANY drug/substance and yet they put a limit on pain medications that allow those in chronic pain to function in society at least as much as able. How is this ok? Not only that, but they just attached a huge stigma against the use of pain meds to go so far as creating children’s books that talk about ‘mommy using opioids’ and needing help…. Wait what?? Wouldn’t it make more sense to talk about illicit drugs as a whole rather than single out one particular drug that used by many to keep someone functioning? Why put fear into a child about pain meds? Pain meds are good for those who have need of them and due to all of this, an even larger harm has been created in our society in the last few years due this campaign against opioids, no different than their ‘war on drugs.’

Hospitals given incentives to limit their use of opioids by paying out more money if they can use alternative means. There will always be those who abuse their roles and story after story was told of being left in severe pain from surgery after waking up and being denied opioids. Yes, that happened over and over as hospitals raked in extra funds for using Tylenol and in some places, lavender essential oil for pain. I truly feel like I woke up in the twilight zone and we’ve gone back in time to biting a stick for pain.

Legitimate patients using opioid medications to function were taken off of the medications without choice. Left to suffer not only the withdrawals of stopping this medication but also to suffer the effects of their chronic pain and debilitating condition without a proper medication to reduce the pain. They were left to suffer. I’m sure almost all of us were left in fear as we read story after story of patients having their life saving medication taken away from them, waiting for it to happen to us. Many who were on high dosages (higher than what some non doctor decided was the threshold) were suddenly tapered down (some without taper) to fit under this new imaginary number that the CDC determined people can’t go over. A recommendation, not law, that was also ruled with an iron fist with the DEA going after good doctors who refused to go by this “RECOMMENDATION.” What has our world come to? They just created more illicit drug users as some took to the streets in defiance looking for illegal ways to reduce the pain that riddles their bodies. Legitimate pain patients!! Some turned to suicide, refusing to live a life in severe pain without relief, care, or help. You’d be shocked if you knew all the numbers involved. They don’t talk much about that in the media. America’s dirty secret. The rest are left trying to function on doses that don’t work near as well as what they had prior, struggling to function. Some of us were lucky. I’m thankful I wasn’t over the ‘recommended’ limit but the fear of having my meds taken away is real not only for me but for those aware of the situation our pain patients are facing. Many patients have even refused surgery due to the stories of those left struggling with little pain relief after their own surgeries. No one wants to wake up in severe pain after being cut open and left to suffer.

Story after story run by the media about this crazed ‘opioid epidemic’ and all these deaths due to opioids and yet the real numbers tell a different story. Illicit drug use, not prescription medications, are the cause of these spikes in death. Illicit drugs cut with powerful substances being sold on the streets not in doctor’s offices. So why smear legitimate pain patients? Why punish legitimate pain patients? That’s pointing the blame at the wrong person and then punishing them for a crime they didn’t commit. Why?

If drugs were legalized we wouldn’t have this problem. If truth and justice existed we probably wouldn’t have much of a problem either but that’s doubtful to change any time soon. If we legalized and regulated drugs, we could safely allow those to continue a habit they would continue anyway but without the fear of what’s in it, without the fear of a tainted supply, without the need to limit good legitimate patients for a crime they didn’t commit. They could also make money off it if they so chose. There’s always money in drugs. Take the money from the cartels and black market that will always exist and put it into our states instead. Create REAL programs for those with addictions and those who need help with mental health problems. Imagine the facilities that can be created off the money made. Real facilities, not thrown together back alley rooms where people NEED to remain anonymous and help is limited. How about plush retreats that only the rich can attain. I’ve researched wilderness camps for my child, a nice nature retreat where he can reset and get guided help and focus on his anxiety and depression and you want to know what that would cost me? A mortgage in some places! Over $50,000 for short session with all the right tools in the right places that might actually help my child rather than the closed off room in a small office where they simply sit there and talk or at least try and talk as some children don’t want to talk about things going on in their heads. This boils down to rich vs poor and what’s available to each. It’s sad. Don’t we want a productive society? Don’t we want people to get help and better function in this world, able to give back? Yet our country places stumbling blocks in front of us, creates massive stigma’s and criminalizes behaviors that are not against society but simply against themselves creating those barriers that keep people from getting help.

We’ve done a good job at our institutionalized places of learning teaching our children about the dangers of drugs and the legalities around it but what have we done to teach them about love and compassion and seeking help in a world that tells them it’s bad to begin with? It’s a catch 22. We need to break that.

It’s really no different than someone who feels suicidal but can’t be honest about it without getting locked up or having their children taken away from them. The stigma is real. We’ve placed those barriers in society and then expect people to reach out and get help. Yeah, you might catch a few of them but most will simply bury those feelings and try and suck it up, never truly able to be honest or seek the help that they need. Then compound that by being a chronic pain patient on a legitimate prescription and the fear of having their meds taken away and what help is truly available for them.

Here’s an anonymous example of someone’s life:

Imagine living with chronic health problems, keeping a person disabled. They get a few hours relief each day from the pain meds they’re taking. This person’s a fast metabolizer of medications and already on the max dosage ‘recommended’ by the CDC so no more meds will be given to help with the pain. On good days, the meds work well for three hours but on bad days they only last one to two hours so there’s a lot of break through pain but a second script to cover that is no longer available. (And yes, many alternatives were tried and nothing other than heat which lasts maybe 30 minutes have been successful at reducing the pain.) They are only allowed one pill every 4 hours. But instead, they take the meds as needed, knowing their own bodies and making their own decision at how to handle it so they take the meds every 2 to 3 hours depending on the level of pain their experiencing. Yet, every time they see their doctor, they say all is good as they can’t be honest. They’re not allowed to be honest. Being honest will get their medication taken away from them. They know damn well they won’t get additional pain help and they know damn well they can’t be honest about not taking their prescription as prescribed. Is this person a bad person? Is this person abusing their meds? Is he a drug addict? In my view, the answer is no to all those questions. Our society has simply set up road blocks to being honest and receiving adequate care. And for the record, on really good days, he can space the meds out even further apart and sometimes save an extra pain pill for a rainy day so it’s not like he’s simply using them up for some kind of need/addiction.

Let’s talk about saving those little pills. Unlike some meds where you can be an adult and simply take them when needed, with pain meds, you are expected to take every single pill exactly as prescribed. If you admit you’ve had some good days going on and were able to reduce your usages by even one little pill, the next thing you know, your script will change, your meds will be reduced and you’ll be left to suffer when the good days end and the bad ones pick up again. We’re not allowed to be adults. We’re not allowed to be responsible for our own usage. We live under an iron fist and treated like junkies as we have our meds counted, our urine scrutinized, and treated like we’re criminals even picking up those meds at certain pharmacies. It’s dehumanizing. So no, if they caught wind that we had even a tiny little stock pile of extra pills for when pain gets brutal and knowing we won’t be given help during those days, that’s grounds to remove our meds.

Imagine in a disaster if things shut down, knowing your exact count and when your meds will run out. We’re not allowed to fill early and we’re not allowed more than a month at a time even though any other drug is allowed up to a 90 day supply. Not pain meds. We simply might use them before our prescription runs out. But truly, legitimate pain patients know better than to be so stupid. We know how many we get. We know if we were to run out early, we’re not allowed an extra fill. That’s drilled into us. Who in their right minds, who legitimately need them, would blow through their meds? How is 90 days any different than having our 30 days? We know the count.

Every time we see the pain doc, we have to fill out a form that asks lots of questions in relation to anger, mental health, depression, ect. Of course they also ask if we abuse our meds, take them beyond how they’ve been prescribed or for reasons other than what they were prescribed for. My honest thoughts? Who the hell would admit if they did? What if Janey discovered they helped her anxiety and on a really bad day she takes them for exactly that. What would admitting to that mean for Janey? She’d have her pain meds taken away as she signed a contract (another thing required of us) and would be considered to have broken that contract. So why ask? What about the example of the guy above? What if he admitted to taking them sooner than prescribed? Again, there go his meds. And obviously if you have some idiot getting pain meds to use for illicit means or to sell them, do you honestly think they’d admit that on that questionnaire? Seriously? What’s the point? You can’t be honest, you’re penalized for trying. Though the person using it illicitly shouldn’t be doing so via pain management route, even if they legalized drugs across the board. Those people would need to go a different route, however that would look like. Pain management should solely focus on those seeking pain relief.

I’ve often wondered why they ask questions about anger or depression. With so much fear of losing the only med that gives some sense of relief, would those meds be taken if you admit to feeling depressed? Angry at life? Suicidal? Again, these stigmas come to hinder people from seeking help in one of two ways.

What if someone was severely depressed and wanted to seek in treatment for their depression? There are two immediate and very logical fears that come to mind, having seen my own mother going through a similar situation. Suppose you admit yourself to a facility for some much needed help. What if your facility doctor decides you shouldn’t be on pain meds? What if they decide that your dose isn’t appropriate or that they fail to give your medications on time? Those are real fears and real experiences had by others. In my mother’s case, she takes one very small dose of pain meds each day for her restless legs. No other med has reduce that pain except her pain med. The doctor didn’t feel she needed it even though she’d been on it for years with great success. Not only did he try and deny her dose of medication but he attempted to have it removed. She won that battle but it was hell for months after having to rejustify and fight to keep on it.

Psychiatry is NOT pain management. Yet it was a group of psychiatrists that first attempted to control the facade of the ‘opioid crisis’ seeking out the CDC and determining their own recommended dosage limits and starting this war on pain medicine. They were quite successful to the point of states creating their own opioid tasks force with many many states not having a single pain management doctor on the panel. The very specialty in prescribing opioids and yet that type of specialist was excluded from the decision making and denied the input that would ultimately affect his job and his patients. Nor did they allow the insight of chronic pain patients when setting up this new guideline. It’s so mind blowing how this whole thing came about, how it was handled and how many rolled over and just accepted and allowed it. Those who fought back got penalized. I’m starting to think our country is slowly moving over to a dictatorship.

(1) https://www.merriam-webster.com/dictionary/crime

(2) https://legal-dictionary.thefreedictionary.com/crime

Set Up For Failure; let’s talk mental health.

One of the very first statements a counselor or psychiatrist will tell you is that if you mention that you are a threat to yourself or others, they will be obligated by law to report you. The immediacy of walls and defenses thrown up is a hindrance to getting real help and therefor the system is set up for failure before it even gets started.

What exactly constitutes a threat to your self or others? Obviously actions and a plan is part and most important (and understood) but what about thoughts? Are they acting like thought police, waiting to report someone for simply having thoughts and feelings of harming oneself or others?

What exactly does it mean when someone is reported? Will they be immediately taken away and locked in a padded room? Will they be flagged in the system and heavily watched? Will CPS get involved and disrupt their lives? Or will it simply allow for immediacy in a referral and moving to the front of the line? There’s so much uncertainty in this situation that it causes a major roadblock in seeking help. WHAT DOES IT MEAN??

There’s already a negative connotation and stigma attached to mental health. It’s hard enough to admit ones thoughts and feelings especially when they deviate from the norm. Our system is so set up for failure, there’s no wonder why bad things do happen and people turn to drugs, self harm, or snap and hurt others. Not to mention the dangers associated with being bullied in schools and lack of recognition from the adults who are suppose to keep you safe and help you. With conflict resolution just getting started in some of the schools, we’re simply barely scratching the surface. Today’s bullying is no where close to the bullying that went on in decades prior. With as many kids suffering from autism, health issues and mental health issues like never before, we need to change our system immediately to make sure no child is left behind in getting the help they need to feel safe, understood, and treated as necessary.

We absolutely must rid the stigma attached to mental health issues. We must decriminalize drug use and focus our funding on building more safe places for kids and adults to seek treatment. We must put our funding in training more medical personnel into understanding and treating those needing help. We must change our approach. God knows, what we’ve tried both on the mental health front and the war on drugs front hasn’t and won’t work. Why keep repeating the same failures over and over? Pride? Stubbornness?

I hate to say it, (sadly it’s true enough) that those with money typically get the best help available to them, state of the art facilities that provide real distractions, focused therapy and compassionate care that those without the finances don’t have access to. It was shocking to discover the cost involved in wilderness camps for teens. I could buy a house with the admissions charge they ask for. Yet, studies have shown wilderness camps as having a good success rate in achieving long term skills and recovery. A basic clinical facility with underpaid staffing and simply throwing one drug after the next at someone is not the answer and may drug and sedate a patient long enough to appear recovered but they will simply relapse shortly after leaving the facility.

All these millions if not billions of dollars thrown into the war on drugs and mental health treatment could be better managed and utilized if we give our system a real look at the successes and failures of our current system. Why not ask those seeking help both in past and present what they feel would help them? Why not survey the actual people going through their plight what they feel they need rather than relying on those at the top who aren’t knee deep into the viewpoints, feelings, and experiences of those seeking help? Wouldn’t their input be valid? Seems no different than those at the CDC seeking to put guidelines on opioid prescriptions for those with chronic pain without asking the very doctors and patients input from those who actually treat or have chronic pain. How could they possibly think that would be successful? You wouldn’t ask a plumber advice and guidance on electrical systems, right? How is this simple common sense lacking in our world today?

To be continued…

Another Conundrum:

There’s a medication that’s been around for decades. It’s meant to calm anxiety and panic attacks. You have a child with severe anxiety and panic attacks but no one wants to prescribe it because of that stigmatizing word again; addiction. So we’ll leave your child to suffer severe symptoms causing endless chaos to those around them, sucking the desire of life right out of him and anyone watching him suffer who’s obviously suffering with him because, he just might, become addicted… But we’ll shove other medicine down his throat that causes a lot of other side effects, symptoms and harm triggering even more anger, frustration, and now reluctance to see any doctor ever again or try a new drug intended to work more long term. And the system?? Well, it’s set for failure once again as there’s limited specialists available in the field of child psychiatry and often the wait is more than a year for someone to get seen and what’s a parent to do during that years wait while the anger is building and the symptoms go unaided causing so much more anxiety that he refuses to even see a counselor or leave the house or simply function…

And the services he has had, don’t even get me started there. A totally broken system.

Dying… One day at a time

I’ve been sick a long time. As I’ve navigated the medical system trying to solve all the pieces to the puzzle, I’ve been left adrift at sea, floating aimlessly towards the waterfall taking me over the edge and to the other side. Unfortunately, doctors don’t seem to see the waterfall in front of me.

My body is falling apart. I have so many health issues taking my body in different directions but one in particular is driving me downwards on this spiral towards death that I feel deep in my gut, my heart, and my mind and yet I don’t think the doctors and specialists have an inkling of how serious my condition is or even a true understanding of what I’m suffering. I can only feel it as I fight the system, begging them to figure out what is tearing my life apart.

It’s not my ME/CFS causing this spiral. It’s not my connective tissue tearing me apart. Fibro doesn’t escalate. In 2015, I began to experience body wide vibrations which feel akin to holding onto an electrical current that pulses through my body at various intensities. It’s not left me since it first began though at times it’s barely perceivable. It’s either an issue of the muscles or the nerves but not one answer has been forthcoming. At it’s strongest, it’s been felt by others in my thigh muscles, where it seems the strongest.

In addition, my legs became like jello with heavy weights and difficulty in moving them. That feeling is not as bad as it use to be and seems to have gotten better. I’m left with fatigued muscles and a perceived slight weakness in my legs. I developed weakness in my hands as well. Not terribly, but enough to notice as I drop things much more often and don’t seem to have as much strength as I use to. I had a tremor at that time which has since disappeared only to rear it’s ugly head every now and then. Shaking in my legs that are visible and annoying that comes on out of nowhere to simply disappear once again.

I do have something neurological plaguing me. My feet lack sensation. My legs and hands go numb or tingly and I’ve had burning sunburn feeling for months in my back, a warm liquid sensation down my legs, burning patches on my skin, cold ice sensations in the back of my head and random neurological symptoms that come and go out of nowhere. The pain is body-wide. The pain and fatigue rule my life like no other. Pain in my muscles, my joints, and what I can only explain as a raw nerve like pain which predominates in my lower back, hips and legs.

My gait changed on me several years ago. It’s like the signal in my mind did not match the signal in my body. My mind tried to walk at normal pace but my feet did not operate at that speed and I took a few falls. My legs don’t seem to want to take the fast large paces I’d been accustomed to as I now walk with a short slower shuffle. It’s odd. When I try to walk faster, I can trip over my feet. The pain in my hips, thighs and butt has been severely intense requiring around the clock pain meds in order to function. I can’t stand long nor walk far without the pain increasing.

I developed faciculations about two years ago. Predominately in my thighs and butt muscles. Last year around August, I started dropping weight. In addition, my butt muscles atrophied. They’re gone. My round bulbous fat booty is no longer. My skin sags off my backside and I’m flat and unsightly back there. The fasiculations continue. On occasion, they have moved to my mid spinal area on the left side. I developed pain there shortly after. My back muscles feel weak. My shoulders and neck are weak. It’s hard to sit or stand unsupported. I’ve not had many fasiculations in the upper body though recently started them in my right arm in the back with a single muscle that flared up in pain. Will I atrophy there next?

Back in 2015, I developed cognitive dysfunction. Words were coming out backwards, memory issues, and brain fog. I told my hubby something was wrong with my brain. They found lesions. Only three small lesions, two in the frontal lobe and one in the occipital lobe but tiny and nonspecific. No answers were forthcoming. Though my speech has gotten better, my voice box is not the same. My voice had become more horse and deeper than it had before around the same time as my memory issues hit. Recently, I’ve had a few minor episodes of losing my voice momentarily. I developed a cough around two years ago. I am a smoker so there’s that.

I suffer from internal spasms. Colon spasms, diaphragm spasms and esophageal spasms. I can choke on my own saliva. This too got worse a few years ago. It seems to come and go like a roller coaster ride but the difficulty in swallowing is more consistent, there are period where I can ignore it as well as periods where I can hardly eat. Last year, I started dropping weight. I lost over 15 pounds in a few short months and from then, 135, to now 110. I have difficulty with my appetite. I don’t often feel the sensation of hunger. My bowels don’t often feel the sensation to defecate though I feel it at the sphincter area, not in my abdomen. Sometimes eating causes pain and or nausea. It’s hard to eat much and I get full quickly.

I just recently had surgery both exploratory and a hysterectomy. The doctor found endometriosis and removed it along with adhesion’s on my liver which were removed. The shocking part, during exploratory, he watched as my bowels danced in front of him, on their own accord, something he’d never seen in his many many years as a doctor. Even under anesthesia, my bowels had a mind of their own and they spasmed over and over again. I can only be thankful this was seen so that I can get a write up to share with my gastrologist who has yet to dig deep into my digestive issues. I feel no one has really taken me seriously thus far. Symptoms of pseudo-obstruction or volovus which I’ve mentioned yet no scans were ordered for me..

My surgeon, upon meeting with me during recovery, immediately mentioned my need for a neurologist. I’ve seen three already…. He gave me a suggestion and I realized it’s one I’ve researched prior and tried to see but was denied a few years ago. Maybe now, with his recommendation and write up, she’ll accept my request. Will I finally get answers to the neurological part of my health issues that have plagued me for so long?

Is it one progressive condition or two separate conditions due to the length of symptoms over 20 years and recent seriousness or change over the last 4 to 5 years.. I don’t know. I do know I’m progressing. I feel my body dying and yet the doctors around me are oblivious of my plight until I’ve hit the anger stage and simply told them straight up, “I’m dying.” That’s a huge risk given how often we’re accused of being ‘hysterical’ “somatic symptom disorder’ or simply ‘overly anxious.’ But I’m simply done caring what they think of me mentally, something that bothered me greatly before. Now, I just want some damn answers. I need help. I AM DYING. The roller coaster ride has had a downward trend over the last several years and the progression is noticeable.

It’s fatiguing to talk. I can no longer sing without serious exhaustion. My body is tight and painful and never seems to truly relax. My thigh has spacisity. My butt is atrophic. My spasms persist. My inability to hold myself up without fatigue and pain has intensified. I’m uncomfortable in my own skin. I am in pain. I have lassitude.

The system is slow and uncaring. Prayerfully soon, I’ll get answers. Since surgery, I’ve had this insistent clicking/clunking in my sternum/chest area. My hubby can feel it and I can hear it. It’s bizarre! Is it my sternum due to my connective tissue disease or my mitral valve? Is it diaphragm spasms? The hiccups are constant but an issue I’ve had for a while now. The clicking is new. I’ll mention it to my doctor during my follow up. Just another annoying symptom to add to the list of many. Will I get answers? Will I ever know what ails me? I’m starting to think I won’t….

My Battery’s Broken, Please Understand..

Many have heard of the spoon theory analogy for our chronic illnesses, but when I think of how to describe my illness, a broken cell phone battery comes to mind.

On a really good day, it charges most of the way up but typically it’s less than half way full. Simply using the phone, eats the battery up quickly and it takes forever to charge up again.

On top of that, the charger has some exposed wires that causes shocks and jolts of pain if I’m not super careful when using it. My apps are slow and sometimes they don’t work. I can’t rely on using them.

I feel that my pain and exhaustion is not understood fully. It hurts to get up, it’s exhausting and painful to stand and every little bit of energy I store up, I would like to use for myself to catch up on the long list of things waiting on me. Every time I help someone, I’m using up what little battery that I have and so it puts pressure on me and makes me angry because that’s one less thing I can do for myself.

I use to be the rock, the one everyone looked to to help them out. Now I’m the one that needs that help and yet I’m still being looked at as that rock and they fail to see that it’s been broken into little pieces. No matter how many time I try to explain this, how many times I’ve broken this down, it seems to go through one ear and out the next as I’m looked at expectantly, once again, to attend to even simple little tasks that can be handled themselves.

Talking is exhausting! It’s actually easier on me to type than to have a conversation. I’m not mad at you, ignoring you, or even rude. It simply exhausts me to carry on a conversation and try to pay attention to what is said to me. Please keep it short! When you drag on while telling a story, inside I’m bouncing up and down screaming hurry up and get to the point!!

I’m not trying to be rude, I just can’t pay attention that long and I’m feeling restless and just want to go lay back down. And when you cut me off to ‘hurry up and say something before you forget,’ you’ve just made me forget what I was trying to say in the first place.

Yes, there are days that I can carry on a conversation and feel normal for a while but please pay attention to the signs! If not, don’t be upset when I tell you I’m not feeling chatty at the moment. My processor is running slow right now and my fatigue and pain are at the forefront of my mind.

I HATE to cut someone off and make them feel unimportant or that I don’t care or want to hear you. I also want to be heard and know that you KNOW ME and can see when I’m tired and distracted and not feeling up to being warm and cozy at the moment. Understanding this shows that you truly understand ME and that you care about how I’m feeling.

If you know that I’m ill and you tell me that you don’t want to put any more work on my shoulders because you understand, then please clean up after yourself and not leave a HUGE pile of stuff for me to clean up after you when you leave. That’s really really insulting. (still holding a grudge).

Every little thing you can do to help me, truly helps me. Even the simple things. I do notice, you don’t have to point it out to me. I’m sorry I’m not vocal in praising you all the time.

I know it doesn’t seem like a big deal to you, but when you want something done, please don’t expect me to do it for you especially if it’s not even my task and it’s something you can do yourself.

If your doing a task so I don’t have to, please don’t have me walk you through each little step. At this point, I might as well have done it myself. It cost me energy and takes off one of my own tasks on my list when I have to get up and stand there and speak and use my brain. I wish you understood this!

Living with a broken battery is tough enough. Add cracks, exposed wires, faulty apps, and that’s my life with a chronic illness. I rather it not be but that’s the cards I was dealt so I have to make the best of it and pace and get help and worry only about the big things while trying not to sweat the small ones.

Every little thing you take off my plate, helps me. Every little task you add to my plate takes a little more of the remaining battery life I have left for the day. Please think about this before seeking my help especially if it’s something you truly can do yourself.

Please be mindful that I might not be chatty and talking does take a big chunk of my energy bank. Keep it simple and to the point unless you know I’m having a good day and am engaging with you. Please pay attention to those signs which shows me you listen and you care. Living with a chronic illness is a daily struggle, it’s not something we can just get over or plan for.

The Talking Head..

Many years ago, when my health was a beautiful thing, energy abound, optimistic in life, my future ahead of me, I sat at a pond on my dad’s property, late at night smoking a joint with a dear family member. We had a case of the giggles talking and laughing till we were out of breath. I remember distinctly hearing my family member joke that he was a talking head. That name stuck with me.

As illness took hold of his body, later in life, that night often floating through my mind and I wondered if these were prophetic words of what was to come. In the end, it was me. It was me that became ‘the talking head’ as ME/CFS and other illnesses ravished my body and left me on my back watching life pass me by as I was sucked into the abyss of chronic pain and fatigue. Weighted down by the forces of gravity like sand bags attached to each limb, limiting my ability to function…