I’m a Loser…

I’m a loser. I sponge off my husband and don’t ‘help financially’ by working a job. I’m lazy. I inconvenience others. I slow people down. It’s just anxiety. I’m not really sick. I’m faking it. I’m taking advantage of the system. I’m a bad parent. I don’t let my MIL use my bathroom in an emergency while going through chemo. It’s all MY fault my hubby couldn’t make his son’s wedding. I’m a liar. There’s nothing wrong with me, only mental health. I’m mental. I need a shrink. Somethings wrong with me. I’ve changed. I don’t take care of my kids. I neglect my children’s medical needs…

We have anger management but not for kids, they must be 18. 18, we don’t take your insurance. Self pay only.

Counseling and services with autism provider, the wait is currently 6 months out. Oh, you have Tricare? We only have 1 part time provider so the list is now well over a year out… after waiting over a month to get on that list.

We have EXACTLY what you need for your kid but it’s $8800 a month for the first three months then $7200 a month after that and the program is between 9 to 12 months long…. after the $2800 registration fee…

Oh, you have an urgent referral? Well, we triage all referrals and that doesn’t change the wait time much…

Where’s the website list with all the services needed listed in one place for easy access? Oh, you don’t have one for this state?

She has a WHAT in her spinal cord? Are you sure it’s benign, her backpain is pretty severe, in tears daily severe… No follow up MRI to see if there are any changes? I know google says (yes, google) that they can grow and lead to problems and neurological issues which she already has some signs of? Bye? That’s it? What’s causing the severe back pain, she’s just a child??

I have normal strength, it’s just with repetition and cold that it’s affected. You’ve run all the tests and there are no more? What about the CMAP and other test that actually test for the exact issue of repetition and cold paralysis? Wouldn’t that test prove what I’m saying I’m experiencing, I mean, that’s what it’s for and I haven’t had that one, not that I want it but it would show exactly what I’ve been talking about.. Oh, you have it but I don’t need it since my CK is low to low normal… My blood doesn’t show inflammation even when fully inflamed, I’m pretty weird when it comes to my blood tests… what? Bye? No test to prove what I’ve been talking about?? But.. I haven’t had that one and it would prove what I’m saying!! (door shuts).

No show. No show. No show… Don’t bother scheduling an appt with my kid till you can get your shit together. You have no idea what that does to an autistic child.

No show… I’m sorry. I know you were actually really looking forward to all his promises in the community and all that he shared… I know, our system sucks. I’m sorry it didn’t work out… again. (Where ARE you? Ghosted, BA in psych, only 2 in our state for BI services when we hired him).

This list could potentially be endless… It would blow your mind how deficient the system and lack of help is. Then add being disabled and needing help with the system on top of that and having no one to help navigate it. They see you for all of a few minutes then off to the next case. No one goes home thinking about you at night, nope, they’re not in your shoes so they don’t live or understand the issues that exists and the barriers to support.

FYI, I used to be the neighborhood mom. Most parents didn’t want all the neighborhood kids in their house so they came to ours. At least I knew where my kids were. I baked cookies, watched the kids, kept house, and had dinner on the table every night. We were once with a family gym membership where I found a joy in running. I was finally feeling in a healthy place after years of being ill off and on. I applied to law school. I paid for the LSAT and purchased all the books to study. I went from happy and functioning to ill, very disabled and in a wheelchair. Because I’m lazy. Just mental. I choose to be this way over the happy times with my family. Over active involvement and caretaking, a task I enjoyed. No, I rather sit stuck to my recliners day in and day out, staring at these 4 walls doing nothing while the dust grows, my muscles atrophy, the clutter piles up, our bellies rumble with hunger and the kids miss out on all the family things we used to do… I’m lazy. I sponge off my husband. Just don’t tell anyone about my 100% VA disability that covers half our income, you know, cause people don’t know about that since it’s not their business but apparently, our finances are since they’re spending time talking about it behind our backs then attacking me publicly on social media about it, like it’s their business in the first place… SMH.

Our world is a messed up place. There is a horrible shortage of help and services for people in need. There are way too many pompous judgmental people who rather point a finger than lift a finger. Too many people that thrive off drama rather than compassion and love and caring for others. Maybe I’m too sensitive for this world. Maybe I’m just exhausted and over it already. Maybe I just want to win the lottery, that will likely never happen, and live in peace and be able to afford hiring the real help we actually need because money can do that, insurance doesn’t. Our system doesn’t. But maybe I’m too lazy too even play…

No wonder the suicide rates are high, drug addiction is a thing, and people die in pain..

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Snoop Dogg – Our Devastating Loss WHY??

As a disabled family, getting out of the home is a rare event. We’re isolated, stuck behind these 4 walls and events in the community take a lot of prep and planning and even then, there’s no guarantee of getting out, if it’s me attending, as I never know if it’s a migraine day, or my dysautonomia is so bad I can’t be upright. I typically have my wheelchair for events like concerts since I can’t stand for very long or walk far but my husband wasn’t able to attend so I couldn’t bring it. Winter typically keeps me in bed as the cold affects my ability to function quite a bit. I have kids on the spectrum who also suffer from my health issues. Everything takes careful planning so it’s rare we leave the home to do fun things.

On 12/14, we had a super special event planned for me and my son. For once, it was on a good day. We were both over the moon to attend this event. But an incident happed out in the community, the Ford Idaho Center in Nampa, and an injustice occurred. I am totally confused on what warranted the kind of incident and treatment that took place. An incident that not only traumatized ME but my child as well. We paid over $1600 which is a HUGE deal to us for my son and I to go to the Snoop Dogg concert AND have the after party where he was putting on a private show with food, music, a meet and greet, over $200 in loot and other gear. THAT was a huge deal to us both and we not only got kicked out of the concert but lost out on meeting him, getting our PAID for loot, and the entire experience for something that I don’t even know why.

I’ve been trying to find out WHY we were kicked out and no one has responded to our emails. This was our respite night. It seems like such a small thing to abled people but when you’re disabled and isolated, any event like this is a major deal for us. Had we hurt someone or threated security or was violent, then we’d absolutely deserve the loss of the event. The problem is that we did none of those things and at the time we were asked to leave, we were sitting together and Snoop Dogg had just come out so I don’t understand what we did wrong. My son has taken on all the guilt, the pain, the shame.

He had to witness me have a mental health breakdown outside the venue which I don’t ever do but I was treated so badly, I’m disabled and the cold affects my neuromuscular condition and my phone was in the venue which they wouldn’t let me find and it’s my assistive device with my whole life on there, alarms, appointments, calendar, my phone numbers, I can’t remember those type of things and I have to have that to manage.

The MAV guy refused to let me use the facilities (bathroom) and told me to, “go pull your pants down outside and pee.” Who says that? I explained my disability and they still refused to accommodate. I showed them my alert bracelets. They didn’t care. My son is in such an awful way right now and he has pretty severe depression so this just adds a whole other layer to things and he blames himself as he already thinks he’s a failure and he’s taken it all on himself.

There we were enjoying ourselves then everything gone, just like that, with no explanation, no recourse, no justice, and no return of the money I paid which was a huge amount to make this happen. No items that I paid for for both of us to receive that was saved for the end of the event so we didn’t have to hold it while the show was in process and no way to obtain what we paid for, no way to ever get back that once in a lifetime experience and no way to fix the damage that’s been done to us.

Why? Why did this happen? This was our night of respite. This was our chance to get out of these 4 walls that have isolated us for so long. And that got taken from us. I have written to the venue asking for answers. No one will write me back. How can one man (MAV security) make a call that effects a person’s life without any explanation, any way to defend themselves or anyway to stop an injustice from happening. How can that one man have so much control while we sit by helpless and mocked for my own disability? How can a person who is disabled be treated in a such a manor as I was without empathy, compassion, or regulations in place to keep someone in my condition from experiencing a situation like this that caused us harm?

What recourse do we have? How do we stop this from happening to someone else? How do we make sure that disabled people planning a special night out don’t have this happen to them? How do we get justice or compensation for our loss? I even wrote the venue prior about my disability checking on things and sharing how excited we were to attend. Why am I sharing this? To share what it’s like to live a disabled life. To share how very difficult it is to attend events out in the community. To share how something like this impacts our lives when you experience a devastation like this. To see if anyone has suggestions and a way for justice to prevail. To see how we can fix the system so people like us have the respite we so desperately need without the fear of discrimination or fear of having that taken in a heartbeat without a way of defending ourselves.

Injustice… The Helplessness of Injustice #SnoopDogg

Autism sucks. Yes, autism sucks. It’s not our neurotype or wiring that’s problematic. In fact, I really like the way in which we think and how we see a different side of things and perceive things a lot of people don’t. The problem is the disabilities that come along with it. The behaviors, the emotional dysregulation, the sensory processing issues, the comorbidities, the anxiety, depression and anger. Those are the things I’d change. Those are things a lot of people on the spectrum need help with and those are the things that help is seriously lacking for in our state and from what I’m hearing, many other states as well. There is simply a lack of appropriate services, lack of staffing, and total lack of understanding autism.

On paper, I have a THAT child. The problematic child. The misunderstood kid who is constantly judged for his brutal honestly, inability to handle emotions, and his verbal outbursts that might scare others or hurt people’s feelings but people don’t understand the difference between real threats and an autistic person going to the verbal extreme when feeling their emotions are out of control. For this, we are judged. We must be bad parents. We must NOT be helping our kid. We must be doing something wrong. We didn’t discipline him or we didn’t discipline him enough because that would have simply solved those ‘problems.’ Total lack of understanding. SMH. And we are judged. We are mocked. We are ridiculed. No body thinks about words vs actions. No body stops to see past the verbal language and into the actions of this child through the many years he’s suffered. If he’s such a bad kid, why has he not harmed someone? Why has he not made good on his verbal vomit? Why are any incidents against him only verbal in nature? Do they not see his love for animals? Even bugs, saving bugs from being squished and releasing them outside. His drive to help someone who’s struggling. Why don’t people see the good and only focus on the bad? The bad due to emotional regulation issues and lack of any proper supports to truly help him cope and learn appropriate skills to self regulate. The lack of a good mentor who can spend real time with him out in the community and bond with him. Where are these mentors?

So when an incident happens out in the community and an injustice occurs, the first thought of many is, “What did HE do this time?” “He must have deserved it.” “It’s his fault.” “The problem child.” But what if he didn’t do anything that warranted the kind of incident and treatment that took place on 12/14 of 2022? An incident that not only traumatized ME but my child as well. An incident that was completely unjust, discriminatory and caused a traumatic meltdown in not only my son, but me as well. An event that has scarred my brain and left me feeling vulnerable, helpless, lost, depressed, and so mortified and upset, I don’t know how to process it and get through it. Where is the justice? Where is the help? How does this wrong get made right? What are our options, our recourses? I can’t let this one go. I just can’t. I can’t stop ruminating on it and I can’t just move on. I’m traumatized. Traumatized by a situation that led to my own mental health collapse after a really tough year and spending a lot of money and excitement waiting to attend an event that meant so much to me and my child. An event that I spent so much anxiety, fear, and anxiousness over as I am disabled and it takes a lot of prep to leave my home and do something like this and in a moment, it was all taken away. Everything. Gone, just like that, with no explanation, no recourse, no justice, and no return of the money I paid which was a huge amount to make this happen. No items that I paid for for both of us to receive that was saved for the end of the event so we didn’t have to hold it while the show was in process and no way to obtain what we paid for, no way to ever get back that once in a lifetime experience and no way to fix the damage that’s been done to us. Why? Why did this happen? This was our night of respite. This was our chance to get out of these 4 walls that have isolated us for so long. And that got taken from us.

I have written to the venue asking for answers. No one will write me back. There MUST be answers. How can one man (MAV security) make a call that effects a person’s life without any explanation, any way to defend themselves or anyway to stop an injustice from happening. How can that one man have so much control while we sit by helpless and mocked for my own disability? How can a person who is disabled be treated in a such a manor as I was without empathy, compassion, or regulations in place to keep someone in my condition from experiencing a situation like this that caused me harm? I am not healthy enough to advocate for myself. My brain wants to completely shut down thinking about this night. But I need answers. I need restitution. I need help making this situation right and I don’t know how to do that. I don’t have the money to hire an attorney to fight on my behalf, to mediate this situation and file the right papers, pushing the venue to respond to my requests and get the restitution we so rightly deserve. I feel lost and so very vulnerable right now.

The Perpetuation of a Lie… and the Damage it causes.

Some people are just born with compassion while I’m discovering that others, simply aren’t. It’s taken me a while to want to even write this as I had a lot to process and I rather write with a calm mind than rant out of anger but I feel it needs to be written. Bullies seemingly exist throughout our society but I’ve noticed a worsening with people since social media became involved.

I’ve been through a lot in life, in fact, it’s enough to write a book about. I’ve gone out of my way to be a nice person and respectful of others even when they aren’t always respectful to me. I’m a peacemaker in that I rather have peace than drama. Sometimes I choose to ignore the insult to avoid conflict as I don’t like conflict. But there are people that exist in our society that not only are drawn to conflict, they enjoy the drama and seek to cause it while they sit back and watch the damage done. These are pretty low people on the totem pole of compassionate people. What makes it even funnier is when they post about how kind and loving they are after literally starting complete and unnecessary drama publicly on social media for all the world to see.

I joined the military at the age of 21. It wasn’t long after, an exposure destroyed my health. I’m currently rated at 100% disabled P&T (for those who know the lingo). That means the military pays for my injuries. I lost out on filing for SSDI since I was unaware at that young age that it was a benefit I paid into and could apply for but I had my VA disability and that truly has helped us with our finances. Finances that are, of course, none of anyone’s business. But somehow, certain people both within my family and without, seem to think my finances are their business.

I’ve never made it a secret that my health is not what it once was. In fact, over 7 years ago, it took a nose dive and I am now disabled and have been for over 7 years. That is life altering. My dreams of going to law school, to one day become a judge, now flushed down the toilet due to the lesions on my brain affecting my memory and due to the break down of my connective tissue holding my body together, so I live with chronic pain. I live needing assistance to support my body as my muscles don’t like to work like they should. I was also diagnosed with ME/CFS and if you’ve ever met someone with ME/CFS or suffer from it yourself, you know how completely debilitating it can be. Simple tasks are no longer simple. Any exertion in the slightest can cause a flare up. It involves a LOT of rest and recuperation. Not to mention having dysautonomia, another horrible condition that makes being upright not so enjoyable. It’s even worse having a child that suffers from many of these same issues. To watch your child suffer can never compare to what I’m suffering from. By the way, those are physical conditions, not mental health. So to be accused of not having a ‘real disease’ and that it is all mental health and I need to see a shrink, not only gaslights and makes fun of those with mental health issues, it’s truly disgusting to say that to someone disabled. And they call themselves nice people.

On average, it can take 15 years to get diagnosed with some of the rare diseases I suffer from. The information is simply not out there. Doctors are not trained in recognizing these conditions and with all the specialized care, getting sent out for each and every body part, where’s the doctor looking at the whole picture? It’s a fight to get a doctor to listen when you suffer from an ‘invisible’ disease, meaning it affects you on the inside and not the out, so unlike down syndrome where you may have a visual sign of the condition, the only difference with me, is my gait pattern. My gait is completely off but otherwise, if simply sitting in a chair at the doctors, I certainly look normal. I don’t ‘look’ in pain. I don’t look sick. Sadly, there are so many doctors who judge a patient on that very thing which is completely mind boggling since so many of our diseases are not visually seen. So imagine how hard so many of us had to fight to get taken seriously in the first place, to fight to be heard and to fight to get diagnosed. Yeah, that was a nightmare. Took me 16 years total for most of my conditions to be diagnosed, and 23 years for my 2 rare diseases to finally be discovered. I have one left, unaccounted for, my neuromuscular disorder, confirmed by muscle biopsy but not showing up in DNA testing. (Unless I count the disputed VUS found for HSP, but that’s another issue all together).

Going through that is enough. Adding your child’s suffering and diagnostic process is draining. Trying to care for a disabled child while disabled is something in and of itself. It’s absolutely mentally and physically exhausting. But add having to fight some of your own family members and outsiders over your REAL diagnoses and called a faker, being told I’m a loser, and I need to get a job, that I’m sponging off of my husband and I’m a mooch, that’s shocking. They’ve completely gaslit those who are disabled, those who suffer from mental illness, autism, and other physical disorders and became class A bullies for the world to see.. until they removed it from their social media platform after being called out by their favorite person, my husband, who can do no wrong. I’m going to share what happened that day and the names of those involved. Why is ok for people to be so cruel and then hide behind that cruelness? Why is ok for people to stir the pot then refuse to elaborate when making an accusation? Why is it ok for these people to jab and run. What are they afraid of? The truth? Cause that one’s wild. The entire group that ganged up and bullied me was all started and based on a single solitary lie. And they not only refuse to acknowledge it, but not one, NOT ONE, has simply apologized for their nasty behavior, for their bullying. That would have gone a long way but instead, they’ve hidden behind blocked accounts. Jab and run. Jab and run. Chickens.

To be continued when I have more spoons…

My Turn to Want to Die. Thanks CDC, DEA

Regulated to death. For living in a country that’s known to be free, we are far from it. The disabled who suffer chronic pain are widely discriminated against, regulated to death and made to jump through so many hoops and hinderances making their lives a living hell. I blame our government, the CDC, the DEA and all those who create the hardships, hassles and regulations that keep those of us disabled from truly being free, comfortable, and able to simply live. They must rather we be dead, why else would they seem to go out of their way to make sure we are so miserable and unable to live free?

I had no idea that if you’re on pain meds, you’re not allowed to have a drink, EVER. I’m not a drinker. Rarely do I touch it and haven’t for well over 10 years if not much longer. But I had a celebratory drink yesterday. I was drug tested today at my pain management appointment. I typically only get tested every 4 months but because I failed my last drug test for a substance I have an absolute true allergy to, morphine, they did a retest on me. I figured they would but had no idea that they tested for alcohol and that it could be a problem. I’m glad I asked as I was curious and that’s when I found out pain patients are not allowed to drink. Grown ass adults and we are not allowed to have a drink. FYI, apparently taking Claritin can cause you to fail a drug test for morphine. That’s the only thing we could come up with as I hadn’t had any poppy seed muffins and we definitely know I can’t take morphine. That was my first ever failed drug test and it made me feel like shit even though I didn’t do anything wrong. But now I have the threat of the alcohol showing up for simply having two small glasses yesterday in celebration. SMH.

It’s already bad enough having to go through drug testing both to ‘make sure we’re taking our meds’ and to make sure we aren’t using illegal substances. We treated like criminals. We’re treated like junkies (even though a drug addict may need pain meds too). We’re not allowed to get beyond a 30 day script even in times of national emergencies. We’re at the beck and call of being called in at ANY TIME to drop a urine sample or do a pill count and even if you’re out of state on vacation, if you don’t show up within the 2 hour window, you get dropped as a patient.

When a person lives with a debilitating chronic progressive condition, the only thing we want is some quality of life before we die. Is that really asking too much? Why is that such a problem? It’s pushed me so far in the opposite direction that at this point I rather they decriminalize all drugs and let us simply decide what we want to put into our own bodies. I’m under medicated. We’re capped at a certain MME equivalent to Morphine that is 100% discriminatory to those who need higher doses and/or meds more often. Almost never allowed to increase the dosage as your disease progresses and you continue to decline. Given just enough to take the edge off but not to truly function. Why are opioids the only drugs that cause so much hassle and mental harm to patients when so many need it to function and take it without issues?

Try being a pain patient going to the emergency room. Simply trying to fill your script, especially when you’re med specific due to sensitivities or allergies. I’m tired. I’m frustrated and I’m getting really angry over all of the hoops and treatment all because I have a disease that doctors can’t cure and can’t treat and I’m left with symptom management. How is this ok?! How is it ever ok, let alone ethical, to allow psychiatrists, addiction doctors and other people to sit on a panel and make these medical decisions over our care without a single pain management doctor on the panel to represent the very population these medications are for? I’m angry! This is not a free country. This should not be how we treat our disabled. Where is the compassion?

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.

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.

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