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

2017 VA Hospital

                                      My VA surgery nightmare

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

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

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

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

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

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

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

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

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

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

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

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

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

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

                                                                                                Dianne MacKay 8/26/19

Right To Pain Relief- We’re Not ‘One Size Fits All’

My ‘good day’ at the fair!

FairPhotoMe1

I live with chronic pain. Intractable debilitating chronic pain. I have a disease that has no cure and no medication tailored to treat it. That means symptom management. Med’s for the sleep issues it causes, meds for the stomach issues it causes, meds for the muscle spasms, meds for my bladder, braces to support my joints, ice packs, heat pads, yes, essential oils, supplements, mobility devices and pain medication. Heck, I even bought a hot tub.

This disease has progression which means, over time, I will get worse.
I’m fortunate, with the current climate going on, that I have pain meds. But all the propaganda, and yes, it’s propaganda when lies are told, is destroying my RIGHT to treatment. Agencies are creating guidelines for which to treat and how to treat and yet where are the representatives on these panels for patients with chronic pain? We’re an entire class of patients who depend on the medications to function but we’re not truly represented. How can you have a panel of people create guidelines for everyone without having a representative for those who suffer? Not only should we have representation but also a handful of patients with experience and history on these medications to speak out on our behalf. We matter too.


Putting dosage limits harm patients. Why? Its not ‘one size fits all’ and that approach assumes that it is. Would there ever be dosage limits on SSRI’s, cholesterol medications, insulin, diuretics, ect? NO. They are all tailored to a patients unique needs. In my case, I have a high drug tolerance to certain medications as well as a fast metabolism for those same meds. That means I started out on a higher dose at much more frequent intervals. I’m being punished for how my body processes these medications. Of course, I’ve tried other options and have other methods that I utilize to help with my pain. But often, this is not enough.


I’ve been on the same stable dosage for years without escalating them. In the guidelines, it mentions CPP (Chronic Pain Patients) will be identified by those who have a stable dosage without escalation whereas addicts will doctor hop and have frequent escalation of meds. This is a problem. Often, we are misunderstood by doctors, discover we’re not the right fit, denied treatment, differences of opinions and other reasons for seeking out different doctors UNTIL we find the right fit. I went through two prior pain management doctors before finding the one for me. Am I a doctor hopper? Guidelines would suggest so. With so many doctors paying the price for the crack down on opioids, due largely to illegal street drug usage, many doctors are denying treatment and refuse to help patients in pain. This means, a whole other referral, another long wait for a new doctor and no care until we find someone who will treat us. This ‘looks’ like doctor shopping but I assure you it’s not. The guidelines need to change to reflect this.


Escalation of dosages and addict’s vs CPPs; It’s not uncommon for CPPs to need surgery for issues that arise, which means, more pain medication. It’s also not uncommon for some of us to need a dose titration upwards to relieve our pain. Guess what? Some of us progress. Some of do build a tolerance to the medication just like any other medication. So, in these cases, escalation would be appropriate just like SSRI’s are increased when symptom management is no longer managed. Yet, the guidelines only show dose escalation as an addict’s response. This is entirely false and harmful to CPPs.


I have bone inflammation in addition to many other painful conditions I suffer with. Imagine feeling your bones trying to expand when they’re not meant to do so. This is extremely painful. Walking and standing make this unbearable and contribute to the increase in pain. My condition has progressed. I have MRI’s to prove this. My pelvis feels absolutely shattered. Imagine trying to walk, sit and even lay down with pain this intense. And yet, I have to grit and bear it because my pain medication dosage is at the top of the ‘recommended’ limit. Instead, I was given testosterone cream…. Still waiting for relief.


It’s extremely terrifying knowing my condition will continue to progress and I will continue to deteriorate with very little possibility of added pain relief. I have NOT become tolerant of my medication. I only know this due to being on bed rest for over four months and having my symptoms abate enough to be mostly managed by my current dosage. But with activity, comes pain. That means trying to maintain my household along with a special needs kid, who also is showing my health symptoms, is not manageable. The longer I’m upright, the more my pain increases until I’m back on back and waiting for the flare up to calm back down. Vicious cycle my life has become. I can not function normally at the level of pain medication that I am at currently. I’ve also already learned that, even with pain relief, I MUST take it easy so as not to flare it up so badly that my body progresses much faster than I can handle. So what are my options?


I’ve already determined that at the right dosage, my medication WORKS. Not only does it help my pain but a bonus, my fatigue as well. Who knew? It also helps my IBS-D and other issues I suffer with. Too bad it doesn’t help with my sleep. They don’t make me sleepy or ‘high’ as many seem to think.


So how do we address patients like me? Where are the ‘guidelines’ for CPPs who DO need dose escalation? Who DO need higher than a set dosage limit when their body is different and can handle so much more? Again, we’re not ‘one size fits all.’ This is a medication just like any other. Addicts will abuse whatever they can get their hands on but why should patients pay the price for someone else’s transgressions? Any drug can be abused. We simply cannot control any and every product known to man that can be abused by some person or another. We cannot force people in pain to simply deal with their pain when other options have failed to address it.


Can you imagine having your child say to you, “I miss my old mommy, I want my mommy back.” “I want you to spend more time with me.” “You never do anything with me.” “It’s always no.” “You never feel good.” My son is older and deals with health issues himself so he understands. My daughter had a small part of my life before my flare up became disabling on an every day basis. She had pieces of me and moments with me that we actually together, spending quality time and simply being ‘mother and daughter’ as it should be. She was in kindergarten by the time I was crippled with everyday pain, unable to function like a normal human being. She didn’t get the school field trips with her mother, the volunteering in her classroom, the family events, like my son did.

My son was lucky. I may have battled issues chronically and out a few times a week, but I had normal days too. There was so much less canceling of events due to the unpredictability of my health. Now, I simply cannot plan at all.  And for every good day I have that equals between three to six bad days to make up for it. So if I have two good days in a row, I’m laid up for a long while. That’s just for my ME/CFS. That doesn’t include my flare ups of bone inflammation that to this day, is untreated and undiagnosed beyond the radiology report of progressed unusual pattern of patchy inflammation.  That pain will knock me down and wipe for out for weeks on end.  I’m slowing learning my patterns and triggers. Day by day, moment by moment. Existing, but not living.


In a perfect world, I would have access to pain meds at whatever level is needed to function as close to normal as possible. Higher dosages during the flare ups and normal dosages during manageable times. I would have control over what I NEEDED and not have to worry about suffering through intense pain for weeks on end. It’s all about personal accountability. Personal responsibility. Instead, I have someone else who controls my life, who doesn’t live with the pain that I live with. Someone who will never truly understand my lack of functioning or I would never have to suffer in the way in which I do.

People are allowed to buy NSAIDs and Tylenol and dose as needed. Why can’t I have control over my own meds to do the same? Did you know I can get high off Tylenol? Weird, right? So many substances out there that a person can get high on. If they want to get high, they’ll find a way. So why should I suffer for other people’s irresponsibility? Isn’t it innocent until proven guilty? Unless I’ve personally given cause why should I be drug tested and treated like a criminal and beg for relief, only to be denied. Why should other people have that much control over my own life when they do not live in my shoes? And I am not trying to knock drug addicts, knowing that they’re battling their own issues.


Never would I have ever agreed with the idea to just legalize all drugs. But having lived with the amount of pain that I do, on a daily basis, and seeing the control that agencies want to have over me, it makes sense to me now. I support that idea. It’s worked for other countries. Just provide more rehab facilities, mental health facilities and get rid of the stigma that surrounds mental health patients and drug addicts.

Those are things we need to be doing, not concerning ourselves with controlling a drug and denying true access to those who need it. No, I am not an addict. No, I do not abuse my meds. But I do understand why patients are turning to illegal ones. I get it now. I haven’t done that but I do understand it wholeheartedly.  It certainly changes your perspective on things, when you live with chronic pain and others completely controlling your life as if you’re a criminal and guilty of some crime, denying relief when needed and taking away my right to live and function in a way in which I need.


We need change. The current system is not working and we’re repeating the same mistakes over and over again. Maybe they didn’t realize how big of a push back they would get when they decided to demonize a drug that provides relief to so many. Why the lies in the first place? Why not raise awareness about the true statistics such as illicit fentanyl and other illicit drugs that are taking lives due to the lack of regulations and buying off the black market. Why add prescription medications into the numbers as a blanket statement instead of actually breaking down the numbers showing illicit drug use deaths and overdoses vs legitimate prescription opioid patients’ death and overdoses? Wouldn’t this highlight the true dangers of street drugs rather than scare half the country about a prescription drug so many are too afraid to use if it needed and doctors are too afraid to prescribe?

We’ve become demonized for using a medication that truly works and truly helps those in need. Talk to anyone who doesn’t use opioids (legally) and they’ll have a horror story about some relative that died or overdosed on illicit drugs failing to understand the difference between a regulated safe prescription when taken as directed vs buying an illegal drug off the street.  All because of the hysteria created by the media and politicians siting incomplete facts and half truths. Maybe they’re ashamed of the truth. Stop the stigma.

And what about the suicides? Why is the media staying silent on this issue? Chronic severe pain can cause major mental health issues and when you’re suffering without relief that drives up the rate of depression and anxiety and worst of all, suicide. People being force tapered and denied treatment are turning to other options. It’s actually driving up the rate of illegal drug use. It’s also driving up that rate of suicide, a problem already too big for our nation.  Where is the outrage? Where is the advocacy?

In addition, many of our veterans are taking the brunt of this treatment.   They were some of the first to be force tapered and dropped as chronic pain patients. I know, because I’m a veteran and it’s been the talk in our groups for a while now.  We suffer with a high rate of chronic pain due to the exposures our men and women face in service. We voluntarily put our lives on the line to protect and defend our country and this is how we’re treated in return?


Imagine if Insulin were in the spot light. Insulin can kill a patient, especially if they don’t have need for it or taken at the wrong dosage. Just recently, a doctor working at a VA hospital was using Insulin to kill patients. Should we ban Insulin? Should we force patients to go to a facility several times a day to have their medication monitored and administered? Imagine the outrage if Insulin were in the spot light and patients were forced to jump through hoops to get the drug they needed to function. Imagine if they were demonized for using this drug that can, in fact, kill. Imagine if they were treated like they were dirty for simply using that drug to function. That’s how, many of us CPPs are being left to feel; dirty.


Why are we not suing the makers of SSRI’s for the dangers associated with those drugs? No one told me the hell I would go through when tapering off of them. They too are given for chronic pain, off label. Certainly didn’t help me. We don’t talk about how dependent a person becomes on those drugs. No different from opioids taken as prescribed. We all become dependent on any drug taken long term. Period. So where are the lawsuits for targeting doctors and people with all the commercials catered to their products? For all the samples and sales pitches to the medical system. The payouts and perks when an office markets those drugs to patients, where is the outcry for this?


How many suicides due to SSRI’s, serotonin syndrome, deaths, personality changes, ect? How many children harmed? The list is endless but it’s not SSRI’s in the spot light. It’s opioids. Why? That’s a good question. This should never have had any effect on patients taking prescription drugs as prescribed. This should never have had any impact on people who need legal opioids for pain. Yes, there were pill mills. They’re being addressed. Yes, some may have been prescribing opioids too easily without exhausting other options. But this too, has been addressed years ago.

As a patient suffering with debilitating chronic pain that will worsen over time, I’m left without options. I’m harmed by the regulations in place that don’t address the real problem and assume patients are ‘one size fits all.’ I am a fast metabolizer and have a high tolerance for pain meds. I’ve exhausted other options and though I metabolize these medications quickly, they work and work well at the right dosage. Patients need the right to escalate their dosage as needed. Patients need the right to ‘doctor shop’ to find the right fit after dealing with a system of doctors who are refusing patient care. And I’m not trying to blame all doctors. Many are just as fed up as we are.  We need to address those issues. We need to quit assuming patients are guilty and treating them like criminals for simply needing a drug that helps them function. This is wrong on so many levels.

We need to allow patients the right to access medications with personal responsibility. Just like a patient having access to NSAIDS, which are also dangerous, we need the right to have the amount needed as needed to address our pain. Ultimately, it’s our body and our responsibility. I have no problems signing a contract taking that responsibility onto myself. I should have the right to be in control of what I need when I need it. I’m not an addict so don’t treat me like one.

I jump through hoops to get my medication. I’m treated like a junky at pharmacies, ER’s and by people who believe in the stigma that our media and government has helped produce. This is a public nuisance to us CPPs. So where is our law suit?

 

Embittered bouts of Jealousy

I woke up bitter this morning. It took me a while to evaluate my emotions to realize I’ve been hit with one of my moments of embittered jealousy. The trigger was something  completely benign in regards to the typical causes of jealousy. In fact it was something completely arrogant and rude of some guests visiting my neighbor for some kind of party.

We live in a cul-de-sac but we have the luxury of no real neighbors to the left, only a fence for a walking path and some greenery and to the right is an additional driveway, a bit of land and then two homes further around the cul-de-sac so we have most of the circle to ourselves. There is tons of street parking because of it. The neighbor closest to us was throwing some kind of party and they had an abundant amount of guests lining the streets with their cars. One of those guest decided she would park on the street but directly in front of our driveway, blocking our ability to reverse out of it, and we had a car parked in the drive. I was shocked that someone would even consider that a valid option and block a person from leaving their own home. How very arrogant and rude. How she has the audacity to even think it’s remotely ok, especially without so much of a request to the owners of our home (us), just blew my mind.

Normally car free, our almost private cul-de-sac

So of course I did the neighborly thing and threw on my boots, in the same baggy sweats, sweatshirt, and beanie I’ve worn for days, and trudged outside raising my voice to the two ladies I saw about to enter the home, hoping to get their attention so I wouldn’t have walk all the way over, with aching legs and a stinky body, but alas, they heard me on my third attempt at hello or hey or whatever it was I yelled, while heading their way. I told them to let whoever parked in from of my drive, know to move their car. One of the ladies spoke up and apologized and said it was her car and she THOUGHT we would have room to still back up…..  Umm, there’s only a few feet and I’d have to reverse drive through my YARD in order to hopefully squeeze out of the space and not hit my mail box. No. Not happening. She begrudgedly moved her car, parking in front of the neighbors drive instead.

The lady was pretty. She was dressed us and carefree, had been laughing with the other lady as she was about to enter the house, a house full of friends, light and laughter. I was too busy stewing over the high and mighty disregard of other people’s property to think anything else in those moments.

Yea, I called her a dumb ass. I love my Ring doorbell.

So the next few minutes were spent gossiping with my mom and hubby about the stupidity and self centeredness of people in today’s society; a nice break from  the normal mundane topics of conversation when you’re stuck behind four walls for days and years on end, until the next idiot decided it was her turn to block my driveway. Though I will give her a tiny amount of credit, she wasn’t blocking it near as much as the first crouton; she did pull as close to the second driveway as she could, but having said that, the space between my two driveways are NOT a parking space nor is it enough room to hold even a half a car, unless you have a tiny bug or fiat.  This time I didn’t see anyone outside to yell at. So I got hubby. Hubby refused to allow me to walk all the way over there since he knows my legs are fairly useless betraying appendages that hurt to use. The lady came out and moved her car….

Just park that anywhere…..

Again we had some lively discussions about the topic.

So I woke up this morning feeling bitter. It took me a moment to realize that bitterness was due to the parking escapade the day prior. I recall in one of those moments when the lady was walking to move her car (The first one) that she walked with a purpose, she was dressed up, her hair was nice, she was pretty and she walked comfortably. I was that woman once. I was that woman. I was that. I was.

No one understands the simplicity of simply walking. Being able to dress up, go out, carefree, live life, enjoying the moments, simply being… Until those moments are an unbearable struggle, riddled with pain and fatigue and exhaustion, it’s so simply taken for granted. My life is changed. My husband’s life is changed. My kids life is changed. We are changed.

Gone are those moments. Gone are those days of exploring the world, going out, family gatherings, spontaneous adventures, enjoying the amenities around us. I am jealous. I am bitter. This is one of those days when the clutches of these diseases pull me under, chew me up and spit me out. When I realize my yearning for a normal life are hiding below the surface of my simply existing, wasting away, drowning in my pain, fatigue, and disorganization.

I want to dress up again! I want my husbands eyes upon me, devouring me, lusting me, enjoying our days, lost in each other’s arms and forging our own path in life, together, carefree. My body is gross. Gone are the curves that frame my body, the muscle that fills my limbs. My clothes hang limply, my skin sags, my muscles gone, my strength, my spark.

My kids are alone, finding their own way and stealing moments at a time with me when my brain isn’t overstimulated and overwhelmed by the sights and sounds around me. Gone are the days we enjoyed each others company, attention, energy, chasing each other around the house in a game of tag, hide and seek, going out as a family, tickle monster… Mr. Boogie…

I’ve spent many moments longingly observing others around me on the rare moments I leave my house. The jogger running down the street, the lady walking her dog, the friends laughing and enjoying their time out. I am jealous. I’ve allowed the bitterness to take hold this morning. My moments of anger are few as I know it will do me no good wasting my emotions on things I cannot change. I should focus on those positive moments and what I can do but pain is crippling and when my flare is ripping every essence of relaxation and peace within me, those moments are hard to grasp and hold on to. I don’t stay at the bottom of my mind for long. I know it’s a slippery slope of toxicity that can rip inside me and hold me within it’s clutches of darkness, spinning me further away from myself and stealing what remains of my existence.

I’m only 40. In my prime. Why me? Why have I had to spend a lifetime of suffering of pain of disability? It’s only gotten progressively worse with time. I always wanted to be one of those blue haired grannies, purposely dyeing my hair and wearing funky outfits, dancing to the beat of my own drum and entertaining those around me, enjoying life and being outspoken, sharing my wisdom and mortifying my grandchildren. Will I even live long enough to see those grandchildren? Will I even get to see my kids grow up? Knowing that I may not even walk if I do, as walking is difficult to me at 40, I have a wheelchair and scooter and how the hell am I ever to find myself dancing at a ripe old age with blue hair and funky clothing if I can’t even walk at 40?

These are my moments of bitterness. Of Jealousy that sneak in and take hold, catching me off guard and bringing me down to a pit of despair. If only they knew how easy it is for them. How simple their lives are in regards to something as simple of walking. How those moments can so quickly be snatched away forever changing their lives and altering their future.

These are my moments. My bitterness. My jealousy.

 

Juvenile Disturbing the Peace- kid with a disability

I sit here in shock about the way in which our state works when dealing with kids with disabilities.  There are many services available for our children when dealing with their disabilities but it’s a stacked system and not in our favor.  You must have Medicaid to get them the proper services.  So we applied. We got denied.  We make too much.  So we used their Katy Beckett program which is for those who make to much. We got denied as they only accept certain conditions limiting those who qualify for the program. Funny thing is, my son would qualify if we can get him the testing to prove he has this condition that has been lumped into the autism spectrum.  But the wait for this testing is 1 to 1 and 1/2 years out!!  We had a referral put in last year in Oct and another from his med management doctor in Nov or Dec and they somehow lost both!  There is no such referral in the system for him.  So he’s back on the bottom of the list and while waiting he goes without these services.  He’s 13!!  It’s much harder to reach a 13 year old than someone much younger so the clock is ticking and we’re at our wits end!  It get’s better…

My son has a lot of issues. He has an IEP and a behavioral plan plus a no contact agreement against a particular Aid that is a trigger for my son. This aid called him a name a year prior. I did not file a report, only complained about it but once my son was transferred to this school I requested the no contact be put in his IEP. They did not but they did agree to the no contact. This particular IEP meeting’s notes’ have conveniently disappeared. I’m curious to see if it was documented as required since it was a concern brought up during the meeting. In Sept, my son was acting out and was sent to the PBI classroom per his behavioral plan. This Aid in question showed up in the classroom, triggered my son, and my son called him Mr. Dickskull rather than his correct name. He then said, Wanna go outside. I was called to the school to pick him up and he was suspended for two days. At this point we decided to just keep him home as he was transitioning to new medication. Turns out he was in a manic episode triggered by the anti-depressants given for his major depression and anxiety. We’re looking at a potential bipolar diagnosis later while still working on an evaluation for pervasive developmental disorder which is on the autism spectrum. Remember that wait?!  Sigh….

A few days after the ‘event’ at school took place, said Aid filed a complaint and asked for charges to be brought against my son. This is a special needs Aid who works with special needs kids, such as my son. The prosecutor sent it to diversion which I declined both due to being disabled and out of principle. It went back to the prosecutor and they have formally charged my son with disturbing the peace. We have an initial court date this Monday at 10:30 am. I’m just in shock that it’s even allowed when there is a behavioral plan in place IN ADDITION to a no contact agreement that wasn’t followed.  I understand this aid works both at the school and this particular classroom.  I understand it’s not always possible to keep them completely separated.  It’s tough.  But they know he is a trigger as is documented, or should be.  Thank God for the emails that talk about it.  So how in the monkey hell can this Aid who should be used to dealing with problem kids file charges against a problem kid when this is his very job!!!

I will not elaborate on the thoughts in my head.  God forbid I get charged myself for thinking them.   What has our society come to?  Punishing my special needs kid 4 months AFTER the fact is no going to benefit him.  We already know he has no filter and very limited executive functioning so words fly when riled. This is all well documented.  We have a behavioral plan for this very issue.  Was it followed?  Did they try positive reinforcement?  Remove the Aid from his presence and then once calm talk about the hurtful nature of name calling?  Did anyone even warn him that this behavior could even lead to charges being filed?  How is he to think rationally in the heat of the moment?  It’s very typical of my son to react first and once calm to think rationally.

I absolutely believe with all my heart that this particular aid was looking at revenge and took it personal.  He called my son a name the prior year.  He wrote scathing letters to the principle of my son’s prior school saying this kid was a danger to himself and others and was disgusted by him and his behavior.  This showed me that he is frustrated and angry at my child.  I can only assume adding the no contact agreement insulted him further and my son has often complained about him glaring at my son in passing.  So YES, I think it’s personal.  But who pays for this?  I do.  I pay by having to stop my already piled list of catch up items due to my own disability so I can devote my time to sifting through paperwork, research, looking for my resources and finding how to advocate for my son.  It’s exhausting, and frustrating, and painful! Yes painful!  Stress adds both pain and fatigue to my already painful and fatiguing condition so yes, I’M SUFFERING, not my son.  My son was already punished when suspended.  He was already punished at home.  How much more can you punish him for words!??!!

I was advised to file an ethics complaint against the aid and an investigation into the school in regards to seeing if they followed both his IEP and behavioral plan.  I know they did moving forward as they agreed to place him on homebound and he’s been receiving his schooling at home ever since.  He’s done fabulously.  He thrives much better in his home environment.  So yes, in the end, we readjusted his plan and it’s working.  But did they utilize the existing plan during the event that took place when he was suspended and then charged?  Guess we’ll find out soon enough.

I need a vacation.  I need to reset.  I need help.

Home Delivery Meal Plans… By your disabled Mom

I have an invisible illness which causes significant fatigue and body  wide pain.  It’s called ME/CFS.  (Myalgic encephalomyelitis or Chronic Fatigue SYNDROME).  Evening times are probably at the peak of my pain and fatigue most likely due to all my movements during the day.  So dinner can be a pain literally and figuratively.  I feel bad about neglecting my household chores but even more so about not having a delicious meal prepared and ready for my husband and children.  I’m a bit old fashioned and if I’m home all day, it’s my responsibility to make sure my family is fed.

I’ve decided to try out a home delivery service.  It was my doctor who turned me on to the idea when discussing altering my diet to reduce inflammation.  She recommended Thrive which I have heard of but never tried.  While researching the company, many others were mentioned in reviews and during my search so I decided to look into each company.  I started with Thrive and put my name on a list to be called for one of their hosted ‘taste’ parties.  I figure if the freeze-dried food is good and enticing, I might try their meal delivery service.  Since they offer the ‘taste’ first party, I went a head and set up my first delivery service with Home Chef, while I wait to ‘taste’ Thrive life before purchasing.

I have a family of four and have selected twice a week to keep the cost down while starting this journey.  What I like about Home Chef so far is that I can cancel at any time, skip a week, and select which meals I want delivered for the week from their list of eleven meals.   I can add additional items to be delivered as well such as a fruit basket or smoothie.   My first delivery will be next Wednesday and I’m looking forward to having a meal plan in place, even if only for two days a week.  I also like keeping the number to two so that I can cook meals I know I like and be capable of having left overs for the next day’s lunch, something that likely will not happen with a meal delivery service since they only send enough for each person’s portion.

So stay tuned for my review of Home Chef, Thrive Life’s taste party, and other meal services I plan to try.  I will be adding to this blog as I experience each service!

Alas, my Home Chef meal has arrived!!  I was pleasantly surprised at how quick it shipped.  I received it yesterday rather than today as scheduled but since I’m pretty homebound, this worked out well for me!

I had selected the twice a week plan for a family of four and chose: Sunday Supper English Roast Steak (Which I have to say, I swapped this one out once or twice as it didn’t look good in the picture, but those darn Yorkshire Puddings kept calling to me!!).  By the way, the picture is deceiving, they looked much better in person.  Second choice was Ponzu Noodles and Charred Green Beans.  Not sure if I’m happy or not about not having a meat in my second option so I might add a small sausage link to it.

The packaging was great!  It could have sat a few more days if need be. The ice packs  were still quite frozen and it was well insulated.

 

 

 

So those are the pics of my first arrival!  I’ll post more when I get to cooking!!

So, I have since made Both meals! I can honestly say, I am pleasantly surprised!!

Meal #1  Ponzu Noodles and Charred Green Beans

The meal itself was the Noodle dish.  I personally need a meat item on my plate, but this would be completely filling to a vegetarian or someone who just doesn’t want to cook a meat!  I ended up cooking a tri-tip roast that was defrosted to add my own touch to the meal.  It turned out perfect.

The meal was easy to make with step by step instructions that were not difficult to follow.  It was healthy and it was tasty!  Best of all, both my picky eaters loved it!  Another bonus is the nicely done recipe card that has holes to add to a binder to save the recipe and make it again.  We will definitely make this again!

 

Meal #2  Sunday Supper English Roast Steak

The recipe card with the picture of this meal did NOT look good to me.  It was the Yorkshire pudding that peaked my interest and ultimately drove my decision to try this one.  What can I say, the word “Pudding” got me.  I was duped! LOL.  I’ve never had nor heard of it before so I was surprised that it was actually just a type of egged bread.  Turned out fabulous though.  My hubby thought it could use a little ‘something’ and the kids were just ok about it.

 

Once again, I felt the meal was lacking something.  I thought it needed a pasta so I added my own pasta side to it.  There was definitely enough, with the pasta, to satisfy everyone. I thought the green beans were boring in it’s recipe so I added some garlic, honey, and soy sauce to the mix.

This was one of the first times cooking a steak on the stove top.  Not something I would think to do but it turned out quite tender and the flavor was good.  I had a bit of difficulty getting the temperature to rise to 145 degrees as the recipe called for but I eventually got there.  The recipe said about 5 minutes per side but it was more like 10 minutes per side.  Once again, very easy directions and every thing needed for the recipe was provided except for salt and pepper.  They even sent butter packets and tiny milk cartons for the ingredients.

I really liked this meal as did my kids. My hubby thought it was good, but not great.  He did say he’d eat it again though. So I count that as a win!!

 

My next blog post will cover next weeks meals!  I have two more from Home Chef before I try a week of Marley Spoon.  What I really like so far is the ability to select my meals from a list of choices as I would never buy from a site I couldn’t have a choice in.  Everything is pretty much included other than salt and pepper so far.  It’s all prepackaged (I know, recycle!!) and put together so I just grab out the bag I need and get to work!  Life seems a bit more simple and easier to manage this way!  Less meals for me to think up, write a list for and either send hubby to the store or attend myself, a task that always drains me.   So essentially, a smaller meal plan and smaller grocery trip.

As a side note, we had plenty of left overs from meal number 1.  Meal 2 had a small amount for maybe one person.    Looking forward to next week!