Invisible Disability

Truly one of the hardest disabilities is one that is invisible. On the outside, we look, ‘fine.’ But on the inside, we’re anything but. It shouldn’t make a difference but unfortunately in our society, it very much does. People judge and that judgement includes doctors, ER staff, family and friends. They don’t see the pain. They don’t see the fatigue. They don’t see the disorientation and dizziness. We look….. normal.

I’ve sadly fantasized about missing a limb in my moments of frustration thinking if maybe they actually SAW a disability, then they would finally understand or treat me with respect and not make assumptions or judge wrongly. It’s also brought a deeper insight and understanding into those who cut. Not that I’d ever cut but I can see it as a way to show the world the pain and turmoil hidden inside when the world ignores your pleas and minimizes your feelings.

Our world is not kind to the disabled. I have a family member who once told me during a migraine that she could ‘finally see’ that I do suffer… That she needed to ‘SEE’ my pain to believe me. Most of us hide our pain. We don’t want to walk funny, look different, or spend our day moaning and making noises for the world to hear. It’s not like acute pain. We learn to adjust and push through it but that does not mean it isn’t disabling or not extreme. We just had to adapt regardless. No one can see the heavy weighted invisible sandbags clinging to each limb. I can describe it all day long but truly unless one experiences it, they wouldn’t understand. It’s extremely difficult to function when gravity acts differently with your body which is another way I like to describe it.

It’s even worse having dysautonomia. Being upright too long triggering migraines, disorientation, pain, shakiness, palpitations and tachycardia. My best position is a slightly reclined position with head support. My muscles simply don’t want to hold my head very well. It kills me knowing one of my children suffer this same thing. My muscles have atrophied along my spine, my butt, and my thighs. It’s hard to come back from that. No matter how hard I try, I won’t build endurance. I can spend all summer lifting a small weight and it will have no improvement in my muscles and cause the same pain and fatigue every time. In fact, it will cause my muscles to progress. What kind of disease is that!?! The catch-22 when you need exercise to improve your muscle function but the disease that causes exercise to worsen it instead. I feel for my children.

Then there’s the Elhers-Danlos. That alone is bad enough but alone is not what Ehlers-danlos does. EDS is systemic and likes to collect it’s own set of other disabilities to join the party. My labs are some of the most bizarre labs I’ve seen. Even the doctors are baffled by them. Truly a Zebra with no desire to be one but that’s my lot in life. I’m fortunate to have a husband who has been by my side over 22 years, supporting me and being my biggest advocate.

No one chooses to be disabled. We need better programs, improvement in insurance and services for those of us who find our lives altered by these diseases. Currently, most policies are set up for those with visible disabilities, again, discriminating against those who remain invisible. Then there’s the issue of government involvement in our healthcare, making medical decisions and guidelines without a license to practice medicine or policies on medicine made by people who don’t even represent the population the medications affect. Patients being denied care, needed medications, correct dosages, having to choose between treating one thing or the other instead of treating them completely. Where is our choice over our own bodies and what we want when we’re the ones having to suffer? Where is the common sense? I’d rather sign a release of liability and take what I need at the dose I need to allow me to fully function than to be undertreated over some unfounded fear that that might cause addiction or maybe even death. Yet the dosages are so low as to not being a realistic concern. But shouldn’t that be my decision to make? After all, I am the one living this life. Quality over quantity.

Yesterday I read an article about a 20 year old male suffering from a disease they can’t figure out that causes him disabling pain. Rather than treat him with pain meds enough to function and have some quality of life, they are offering him euthanasia instead. This is Canada. Euthanize rather than treat. Having a child who’s had those same desires, as well as suffering myself, I can empathize and understand his position but what I can’t understand is how government would rather allow this much suffering rather than allow someone the quality of life they need with medications that DO work or allow the option of euthenasia but not the option of good quality care. This is our world. Where is the outrage about this?

So much outrage over woman’s right to abort but near silence over the abuse of pain patients and the disabled. It truly is a world where people only care if it affects them personally. They’ll turn a blind eye if it doesn’t. Maybe had they fought for our rights when we were seeking help and advocacy warning about the atrocities going on in our country, things wouldn’t be the way they are now. But instead, they were filled with the propaganda by our media, the fear mongering over opioids as if it’s the real cause of our countries overdose crisis and not the illicit street drugs coming off the streets. Yet, the real studies are readily available, the proof is there but the world is blind to it.

I could write an entire book on patient experiences that would boil the blood of anyone who read it if they knew what’s been going on to so many of us in pain. Even those with cancer, crippling disease, major surgeries, so many affected by these biased policies that cause patient harm. Smell some lavender oil after that bowel removal but no opioids for you. When government can offer incentives for hospitals to follow their guidelines and protocols that don’t take patient individuality in account but a blanket policy then we have a real problem. Incentives need to be removed and government needs to get out of medicine and our healthcare. They also need to remove the hypocrisy in regards to cannabis, it’s status under a substance that has NO medical benefit and yet legalized in so many states for the medicinal benefit it actually provides. When it takes legislation and decades to do what’s right, maybe we need to look at our system and fix what’s broken. It shouldn’t be that hard. We’ve lost common sense in our country.

I’m tired. Just truly tired.

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Freedom to Move! My First Powerchair!!

On a whim I decided to check out the local LINC liquidation sale. They sell disability supplies and I was curious what the going rate would be for a used powerchair. Ideally, I really need one I can fold and transport in my own vehicle. I’m not quite ready for a new vehicle or modifications to my current one. I love my car. But I know someday soon, it will be time. It’s getting harder and harder to drive very far and I don’t typically drive except to doctors appointments. But, I decided to check it out and I’m glad I did.

They had so many options available. A powered wheelchair style, full powerchair with lift and headrest, regular wheelchairs, and an abundance of other supplies. I already have 2 regular wheelchairs but they do me no good for independence. I can’t push them. My muscle disease causes paralysis and severe fatigue with repetition and pushing a manual wheelchair would not get me far. So I have one but I depend on others to push me and that really takes away from my independence, something I am not ready to totally give up on yet. Plus it’s not fun being knocked into things when they can’t see the leg rests sticking out in front of me. A little frustrating.

Insurance rules are a hinderance to those with invisible disabilities. It’s much easier to get approval for things if you’re missing a limb or are completely dependent. I still have some independence. I can walk in my home. I’m typically in one of two recliners most of the day but I can still walk in my home. I can’t stand long inside or outside and I can’t sit up unsupported for long either. My barrier to caregiver services was for the sole ability of being capable of putting a spoon to my own mouth. Yet, I don’t cook or prep meals often due to the dysautonomia, fatigue and pain. We need a better system for people like me who fall through the cracks and are left without the services needed to help us function.

So as I’m checking out the mobility devices, I found one that meets nearly every single need. It’s comfortable. It’s thin to fit my thin frame. It reclines and it has a headrest. It’s not the fastest one there but it would get me out of my home and allow me to exist in the community without the immediate decline in my status. There’s only one problem. It can’t be transported without a lift. They didn’t really have any travel chairs that could be taken apart or folded and put into the vehicle. There was one I could potentially transport but not without assistance getting in the car and out and it doesn’t recline or provide head support. I fell in love with the blue one that checked off nearly all of my boxes. I do have a travel lift at home but it’s a huge task to utilize so I really had to think on it. The cost of this chair was literally around 5% of what I’d pay in stores. They even offered it to me for free. I gave them some money anyway as they really went out of their way for me, they even transported it to my home. I now own my own powerchair. No insurance hassles. No VA hassles. No long drawn out waits. It is mine.

The taste of freedom if even for a day on a rare occasion, to be able to be out of my home in my reclined position, to be by my kids side, walking the dogs, enjoying the fair, a concert, whatever, it’s liberating and it’s exciting all at the same time. I’m am happy in this moment. I am blessed to be able to obtain this product that so many of us desperately need. I’m thankful to the person who posted it in my local disabilities group. I’m thankful for the great staffing who went out of their way to assist me. Now I just have to figure out the transport issue and I’m golden. Otherwise, out comes my lift and I have to wait for hubby to help with that one but I’m that much closer to having a little more freedom without the intense pain from sitting upright in a standard chair. Or squatting down in public from simply standing. So many take that for granted.

I’m excited today!

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

Missing The Whole Picture…Words and Facts

When I was a kid growing up, in school we were taught to gather all of the information before forming an opinion. Gather the facts. What do we know? What information is missing? Today’s world seems to be missing this very essential step in the process before rushing to judgement and adding their own 2 cents. I truly believe the internet, social media and our own media has amplified this problem.

We used to have investigational journalism. I miss those days. Now it feels like everything is a big joke, entertainment takes priority, truth is hidden and lies are glorified. This seems to have a ripple effect touching the lives of everyone in one way or another as those around us begin taking up those same bad traits and jumping into the fray forming opinions as if fact and making accusations as if truth. What a sad world we live in.

Maybe attending college for conflict resolution has given me an edge on being aware of two sides to every situation. How our experiences shape our views and how group think can alter the atmosphere. Taking our time to reach conclusions and not rushing to judgement while keeping a rational mind is paramount. But too many can twist facts (I honestly think the definition of ‘facts’ has changed like a few other definitions have of late) to fit their own narrative, what they choose to believe and what helps fuel their own desire for drama as their only way to lash out at the world. Maybe looking inward with some deep reflection and honesty can help open the eyes to people’s own hypocrisy. Maybe not.

Cause deep down, there’s a lot of disgruntled people out there and some simply need a target. A target to take their own frustrations, fears and insecurities out on. Rather than being a rational mind, they’ve allowed fear to corrupt them and while our societal media highlights the drama, rash judgements and harsh criticisms that only seem to want to keep fueling the fire and widening the divide which digs itself deeper into the mind of the people who seemingly look for the easy target, the scapegoat, to latch onto and vent their own anger and insecurities at. They failed to gather the facts.

Another thing I’ve learned in life is to never use the ego when involved in an argument or disagreement with another. This is another thing that has seemingly gotten worse over time. The name calling, the harsh and ugly words against another. Do you honestly think that will do you any favors? If you’ve stooped to that level, you’ve lost the argument. You can catch more flies with honey than you can with vinegar. Calling someone a vulgar or derogatory name isn’t going to win them over and certainly doesn’t help the situation. It only highlights the deep seated anger, insecurity and aggression bubbling under the surface.

Some people are born to be a part of the drama. Some only come out when the stress gets too much. Others just want to simply live in peace watching the events unfold around them, shaking their heads knowing our world is just going up in smoke. Gather the facts people. Don’t be so quick to judge. And be absolutely sure of your information before rushing to that judgement especially if you feel the need to jump in the fray and blast a person on social media. Words spoken can’t be taken back. Can people change? Absolutely but people aren’t quick to forget as social media has shown us. These days a comment made 10 years ago can come back and bite you. Doesn’t matter the relevancy, the situation, anything that can fuel the fire and add some drama can be thrown up at you decades down the road. Words matter.

They use to say, ‘Sticks and stones may break my bones but words will never hurt me.’ That’s a lie. Words do hurt and they do matter. I don’t agree with going back 10 years just to use something against someone. That’s not who I am nor think it’s acceptable. As I said, people change. But words in the here and now, they matter. They create deep divides and shut down the walls and lose whatever trust may have been available. Words can hurt more than sticks and stones. They can divide a family up and widen the gap and close doors that wouldn’t have otherwise. So think carefully before you use your words. Gather the facts. Don’t rush to judgement. And don’t blast someone on social media with accusations that can’t be taken back.

A Second Chance… My Perspective Criminal Justice

Our criminal justice system is not without problems. From lack of programs to help people to criminalizing mental health issues. What I’ve learned in my own life is there are ways that create a more meaning impact with better results than to utilize the system the way we do now, especially for our young people who are just starting out, still testing boundaries and not yet at the point of settling down as they sow their wild oats before determining their path in life.

As a new adult, having freshly finished boot camp, I made a bad decision that could have altered my life forever. I had a few days break before checking in to my training school to start my career field, I went home to party with old friends one last time. I had a few drinks and was likely over the driving limit and even though I felt fine in my own mind, I made the stupid decision to drive over to a friends that wasn’t far down the road. I got pulled over. I can’t remember why I got pulled over in the first place but regardless there I was, flashing lights in my mirror and a fear clutching my heart as all I could think in that moment was my career going down the drain.

The officer smelled the alcohol on my breath right away. He saw my uniform in the backseat and asked me about my military status. I told him how I just completed boot camp and was saying goodbye to friends one last time. He was a human being. It wasn’t just black and white to him. He knew the seriousness his next actions could have on the rest of my life. I wasn’t a bad person. I never harmed anyone. I partied as a teen but I also held down a job, finished my education, and pursued a career in the military all while living on my own since the age of 15. I could have been a statistic but I worked hard to not be. But I made a stupid decision that day and my future was held in the balance by the officer outside my car door.

Shortly after, another officer pulled up behind the one at my window and in that moment I felt defeated. But the words that came out that officers mouth changed everything. He gave me a quick lecture and told me to get to my friends house and don’t repeat the same mistake again. My friend was literally two streets away. I wasn’t incoherent or intoxicated to the point of being sloppy but I was sure it would have registered over the limit. I very carefully drove out of the parking lot and went to my friends house down the street, in shock over my 2nd chance. I never drank and drove again beyond the 2 drink limit. (I could hold my alcohol back in the day, I think 2 sips would blur my vision these days as I don’t drink and haven’t really in probably 15 years).

That officer could have changed my life in ways that would have had lasting effects and limit my opportunities to succeed. Being in the system changes things. I’ve watched a friend who struggled quite a bit, being in the system. When she finally changed her life, she found herself stuck. No one wanted to hire a felon. No one wanted to rent an apartment or house to a felon. Simply having a record kept her from having a life that would keep her from falling back into the system. If it wasn’t for her father owning his own business and giving her a job, she’d likely still be in the vicious circle of hinderance being in the system does to a person. How can one actually succeed when there are barriers in place for making those prior mistakes? It simply adds more negativity, strife and hardship, keeping people down and not doing anything to help ‘rehabilitate’ or help them to be successful. Our system sucks.

Another example of how a 2nd chance can truly make an impact more than a criminal record ever could. My ex boyfriend in my teen years made the decision to sell weed in order to make money. He was probably 19 at the time. He wasn’t any major dealer, just sold some small bags to friends and those who reached out. No hard drugs. One day we were both out and when we came home we found a business card on the coffee table right next to his weed box which sat open. I can tell you now, he never left his box open. Ever. Apparently, the bug man snooped through our stuff. Not only illegal but completely unethical. Well that idiot called the police on my ex and shortly after, we had a knock at our door. A detective paid us a visit. He told us he knew that **** was dealing weed and how a record could affect the rest of his life. Then another knock came at the door. Two recruiters for the military stood there at our door and the detective invited them both in to join ‘our little get together.’

What a crazy freaking experience. I was actually curious about the military, just not that branch of service, and to this day, I wonder if they set that up on purpose. My ex’s mother was the supervisor of the supervisor of the apartment complex and his dad was prior Navy. I don’t think the detective could have arrested my ex for dealing off of an illegal search and rumor from the bug man but nevertheless, that visit changed my ex’s life. Not only did he stop dealing that very day, but he also quit smoking weed. His life changed that day. He’s now married with kids and been working a full time job, being an adult and making a life for himself. He avoided the system.

These examples show that a simple 2nd chance can make a big impact on some of us. Maybe not everyone takes the hint. Maybe some will just laugh it off and continue being stupid but it can catch up with them and deservingly so. But I personally believe that 2nd chances would change more lives than realized. When we have a for profit system and rewards for tickets, arrests, and quota’s, that limits the ability of officers to make that choice to give a person a 2nd chance. It makes it all about money rather than the idea of rehabilitation, helping people, making our planet a better place.

Obviously, there are some ‘crimes’ that would never be on that list of 2nd chances. Rape, abuse, murder, ect. But for other things, a 2nd chance can be life changing and allow for better growth and change than a criminal record ever could. The system is a messy place and it follows you forever. People make mistakes and people absolutely can change and make better choices. Our young people in particular can use this kind of help. Most of us sowed a few wild oats back in the day and then we grew up.

An even bigger problem I will highlight here but deserves it’s own blog, is the criminal justice system and mental health. Having discovered here in Idaho, their method of helping juveniles get the services they need is to put them in the system as a criminal has blown my mind to a whole other level, creating anger, mistrust, and a tainted view of our state justice system. Once in the system, it can create the vicious cycle that can potentially add to their mental health issue they’re already suffering from but also hindering their chances of success. The answer to someone in a mental health crisis should NOT be to charge them with a crime in order to ‘make sure they’re getting help.’ The hardship that places on families and the burden it places on these kids is not the answer. I’m not talking about someone committing a crime in the community and blaming mental health. I’m simply talking about someone having a meltdown, mental health crisis, in my example, in my own home simply needing transport to the hospital.

What a broken system if we can be allowed to place these additional burdens on people who have enough burden on their plates to begin with. There are simple solutions and yet we don’t utilize them. It feels like common sense is becoming less common and systems just seek to place more barriers and burdens that complicate matters when it shouldn’t be that way. In these cases, it’s not about 2nd chances but common sense systems in place that can be utilized, separate from the criminal justice system. It seems no different than kicking a dog when they are already down. But I’ll save more on this issue for a separate blog. It needs attention and needs change.

I wonder if we took this 2nd chance approach, how many people would turn their lives around or make better decisions moving forward? Even if they still continued to make mistakes, how much more careful would they be with that prior experience in their life? Maybe some would completely change. Maybe others would just be more careful which in the end is still a win if it avoids certain behaviors that could possibly impact others. And to those who choose not to learn from their mistakes nor take advantage of their 2nd chance, well, the system awaits them.

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.

It’s Fatal… What?!

It’s mind blowing to know

I have a fatal disease

Without treatment starting

Get it started, please!

Even with treatment

Some don’t respond

And many still progress

That’s not treatment, that’s wrong!

The bigger fear

Will my kids have these genes?

The wait to find out…

They have symptoms, it seems

I told them I was dying

I feel it inside

Too long they dismissed me

I’ve progressed on this ride

Hopeful the treatment

Might stop some decline

But get me in to that center

It’s not your life, it’s mine!

The wait for their results

It’s like standing still

Life in slow motion

Progressively ill

No moving forward

Till we sort this all out

Then maybe I’ll rest

No more questions or doubt

Try to enjoy what’s left

Of this crippled life

Just please not my children

That’s my mental strife.

Dianne MacKay 4/26/2022

22 Years…. 22 Years

                                        22 Years… 22 Years…

22 years I suffered

22 years I cried

22 years I asked for help

Instead, I was pushed aside.

All I wanted was answers

Why was this happening to me?

My entire life flipped upside down

And few opened their eyes to see.

They spent their time full of gossip

Whispering behind my back

Telling each other I was faking

Overly dramatic hypochondriac.

The toxic poison slipped from their lips

Touching those listening ears

Twisting others minds against me

Being wrongly judged by family and peers.

The medical system was no help

They never looked outside the norm

It’s impossible you have something rare

It’s all in your head, now please conform!

It further perpetuated the stigma

Leaving me feeling insecure

Something is definitely not right inside

But it’s not my mind, I was sure!

My body feeling weaker

Losing strength day by day

Pain increasing in my legs

Forgetting what I want to say

My entire life is not the same

Dreams gone up in smoke

My goals, my hobbies, my career

Swallowed by this invisible cloak

Then one day, a simple test

One beyond the norm

Results came in, abnormal

My mind in shocking form

I have not one but two

Rare diseases that were found

It finally all makes sense

My theories were all sound.

Vindication for all those years of hell

I simply told you so

But you refused to listen or even care

How do you feel now that you know?

Do you feel the shame, the guilt inside

The pain for what you’ve said?

Or will you simply ignore the elephant in the room

Refusing to acknowledge what you led.

Will the doctors now take special care

And truly listen to what I feel?

They can no longer blame my anxious mind

This rare disease is very real.

Swimming in emotions

Shock, fear, and awe

Making new life adjustments

Due to that genetic flaw

My life more fragile than I even thought

Every system can be affected

Prognosis unknown weighing my thoughts

This one truly was unexpected

Have I robbed my children of their lives as well?

Praying they won’t end up like me.

Lots of upcoming tests, more answers

I guess I’ll just wait and see.

The pain of those fears running deep

My thoughts heavily weighed down.

The emotions from 22 years released

Holding tight, so I don’t drown.

                                                                      Dianne MacKay 4/14/2022

Take Me To Death’s Door

Take me to deaths door

There’s no pretending anymore

Pretenses melt away

There may not be another day

As I hold your hand to take you through

The uncertainty, fear, emotions ensue

Scared inside, feeling blue

By your side, I’ll be with you.

The past lies dormant

Like it should

Life’s difficulties and challenges

Forgotten where they stood

These moments, raw

Unfettered truth be told

Compassion and love

My heart does hold

As I hold your hand

Your journey is near

Not alone for your transition

When it may appear

The loss already stinging

My heart filled with pain

To know you’re saying goodbye

To never see you again

Hopes and dreams

Ideas gone awry

Plans dissipate

Loved ones die

Dianne MacKay 3/2022 (I hate Cancer)