The Full Story. Get a drink, pull up a chair.

After events this week that I can only describe as maddening and absurd, I reached my limit. I am tired of protecting the police department (PD) for which my husband (DH) has worked the last approximately 8 years. I have mentioned our difficulties for just over a year now regarding his job, but the PD has had us quiet about it. I've had enough of that. I've come to see there is simply no reason to protect them as I have done all this time by covering for their actions. What have they done for us the last year? I owe them nothing. What are they going to do, sue me? They would have to prove harm, and if they want to talk harm, my doctors would have a good old time going after them for the additional pain and suffering they believe all of this has caused. And what exactly do they think they would take from me? It’s not like they’ve paid us…oh wait, I forgot about that 18 cent paycheck that once…
Grab a drink and maybe a snack, sit back, and relax. You’re in for a long ride. It sure has been for us.

September 25, 2008. DH goes to an out-patient surgery center for a non-work related hernia surgery. He has had 3 surgeries in his life before this, with a couple relatively minor anesthetic reactions. When he woke up in post-op from the hernia surgery, he was scared and was moaning and screaming incoherently. Other patients were frightened and complained. Instead of staying the standard 2 hours in the recovery room, the nursing staff kicked him out after only 45 minutes. He has no recollection of this.

DH got home, set up in the recliner, and was given the first dose of oral post-operative medication. Shortly thereafter, he had a hallucination in which he saw something that wasn’t there. He immediately recognized it as a hallucination, told me that it just happened, called our family doctor, and made an appointment in case he was having any sort of reaction. The doctor took him off all meds immediately, and to be safe, went through the list of all our insurance company’s psychiatrists and found the first one who had an appointment available the next day. We had never heard of this doctor, nor did our family doctor have any experience with him.

Between the family doctor appointment and the Psych appointment the next day, DH took more of that medication, and had no further problems whatsoever. He was perfectly fine.

The next day at Psych’s office, DH shared what happened. Less than 30 minutes after his arrival, Psych told him he must be schizophrenic, left the room, and without permission called the PD. Getting the acting sergeant on the line, Psych shared that DH was there, that he’d had a hallucination, what it looked like exactly, that he was surely schizophrenic, and that he couldn’t be on duty. Of course, this was all a massive HIPAA violation. He put DH on two major anti-psychotic meds, one of which the dose was at 4 times the normal dose.

Within an hour, two officers came to the house and left with DH’s squad car and his weapon. He was placed on Admin Leave with Pay, pending a Fitness for Duty evaluation to see if he was fit to continue as an officer. Meanwhile the medication was destroying him; he gained near 50 pounds in about a month, fell asleep every time we stopped at an intersection, and had no memory of what was happening. It turned him into a zombie.

Soon we received notice he had to travel up to Phoenix to see CD, a psychologist—NOT a psychiatrist—for a Fitness for Duty evaluation. We take MAJOR issue with this. We already sent Sterling to multiple types of doctors for independent evaluations, such as neurologists for MRI’s, etc, and all of them documented in writing that there was no doubt DH had suffered a reaction to the anesthetic & post-operative medication used for his hernia surgery, something that apparently they see in the surgical units on average twice a day. A psychiatrist would understand his type of allergic reaction without a problem and move along. A psychologist however does not have the medical training or understanding for such issues. We never wanted him seen by a psychologist for the evaluation, but a psychiatrist. We knew this was going to be a problem.

For me, it was confirmed when CD/Psych called me during the eval. I first told her that I wanted her to know I’ve had multiple brain surgeries so I do have problems with dates, some short-term memory loss, so anything like that she would need to confirm with another person, I just wanted her to understand that so it wouldn’t mess up her eval. Well, CD accused us of lying, said one of us is lying to cover for the other. What in the world there is to cover for is beyond me. She also called others, such as someone in our church, and said since he had done counseling with DH before, he must fill out a form on DH right away; she said she was faxing it right away and it needed returned asap for her eval to be complete. She never sent it.

However, she did manage to find DH unfit for duty. Based on what, we will never know, because we are not allowed to see the eval. Anyone in the country can see it though if they walk up to the police department in Phoenix with ID, money, and quote the Freedom of Information Act. All officer files are public information. But they have refused us access to his evaluation. (We live 2 ½ hours away so getting up there and doing so is more difficult for us.)

After the eval came back Unfit for Duty, we weren’t surprised, given she accused us both of being liars. We figured we’d better start preparing to fight. We started talking with the attorney representative from the Arizona Highway Patrolman’s Association. By Arizona Revised Statutes (ARS), which are the state laws, the Fitness for Duty evaluation could only be used against DH for a period of 120 days. After that time period, it is legally null and void, as useless as if it went through a shredder, the eval never even took place.

June 4 2009 we receive a letter from DPS. They said they basically feel that because he had that reaction, he must be “mentally disabled,” per CD/Psych’s Fitness for Duty eval, so they planned to seek termination. Interestingly enough, though they stated they were going to fire him, they started having him go to his court cases again. (Officers always have court cases to testify at, typically outside of their 40+ hour work week, done on their own time, often without pay; cases are often for DUI, criminal/speed, etc.) They had him wear his badge, his secondary/back-up weapon that they let him keep, his extra magazine--ammunition, and handcuffs. Fascinating isn't it, how they wanted him doing all this for them, fully armed, when they didn't think he was fit. Yeah, right. They have him working when it's convenient for them.

1st problem: 120 day period to act on the eval’s findings is LONG over.

2nd: In the state of AZ, it’s illegal to terminate a police officer unless they have had disciplinary action taken against them that they haven’t resolved.

So they took him off Admin Leave with Pay, stopping his paychecks, 2 days later. After having us on Admin Leave for 8 months sitting and doing nothing, during which time he had to call and tell his Sargeant every time he stepped foot outside the house, yet they couldn’t give us more than 48 hours’ notice that we were going to suddenly be without a paycheck.

After a week’s flurry of phone calls, we learned the only way we could get any money was if we burned up DH’s sick & vacation time. And that’s exactly what we did, as no matter what stupid crap DPS does, there are still two kids here that need to eat.

So we started blazing through DH’s hours. At the same time, they decided they wanted to start billing us for THEIR portion of our insurance benefits in addition to what is automatically withdrawn from DH’s paychecks. Another flurry of calls and we learned federal law mandates employers can only bill employees for the company’s portion of the insurance bill if the employee has NO intention of returning to work. Since we have been fighting for DH to return since September 2008, that kills their attempt to bill us. Nice, trying to get $2,000 a month out of us illegally.

Once we started working with the union attorney, the attorney got DH away from that idiot psych who obviously misdiagnosed him. We got him in at another psychiatrist and took over his care. The guy took one look at DH and was frightened by how overmedicated he was, which is how we learned he was on a quadruple dose of a medication and could have been seriously harmed. Unfortunately he couldn’t just stop taking it; it was one of those meds that required weaning or else it could shut down parts of the system. Over the next few months, Dr W got DH off the med as quickly as possible. The smaller the dose, the more like his old self he was.

Then he ran out of hours. We ran out of money. We had no way to fund the insurance benefits, mortgage, food, bills. Another flurry of calls that week. Someone at DPS wrote him a letter saying he could go on FMLA for his disability. The problem is that would be completely illegal and DPS knew it, being that they already had letters from multiple doctors stating that DH was, is, and always had been perfectly healthy. Having an allergic reaction is not an illness. Going on FMLA requires a doctor’s support, and certainly no doctor was going to sign their name saying DH had a disabling condition. All of them already wrote letters to DPS saying otherwise. To do so would constitute fraud. So, we got DH on FMLA for the maximum amount of time allowed by federal law of 12 weeks through my doctors, with DH as my caregiver.

We were completely without income though, so DH got a temp job at a hardware store for a couple months, which ended last month. For the last 3 weeks we have been frantically filling out applications trying to find him something, anything else.

It finally got to the point where a grievance could be filed by the attorney so the Law Enforcement Merit System Council could take over if the grievance was not taken care of by DPS appropriately. We are almost finished with the grievance now. It has to go through the chain of command one by one. Everyone in this region has been on his side, supportive of DH getting back to work. By law, each level of the chain of command has 10 days to respond to the grievance in writing, and then pass it to their superior in the chain of command. Basically they have to put down why they were not able to fix our grievance, which is that they did not put DH back on duty when he was given clearance by his health care providers; according to state law, officers must be put back on duty when given such clearance, so DPS is violating multiple specific laws and they know it. The 1st 3 levels in the chain of command were great; they filed their response and passed it up the command in less than 48 hours.

The problem for over a year now has always been with a certain person in Phoenix. Unfortunately because of his position in Phoenix he must be included in the grievance process, though he is a major part of the problem. We have major suspicion that the reason he wants DH out, has wanted DH out for nearly 8 years, is because of a years-long conflict between certain persons and DH’s father—until somewhat recently, a high-ranking DPS officer who burned a lot of bridges. FIL not only was known by all the DPS officers in the state, but he spent time teaching at the state law enforcement academy, where all people must go through to become an officer in every department in the state. No matter what city, everybody knows DH's dad. To make matters worse, they have the same first and last name, so when people see his badge, they see it, look at it, and immediately it's abundantly clear who he is; then starts the comments, such as what we heard the very day of his graduation ceremony at the academy from one person in the command staff, "Oh great. That's all we need, another "Jones" on duty." That's the attitude we've dealt with from the start, from being passed by for training classes he put in for when he had 6 years on but instead they'd send the guy with 1 year on. Dozens and dozens of times, DH was pushed aside. So the grievance got to this person and legally he had 10 days to respond like everyone else. His 10 days ended Monday, 2 days ago. The deadline came and went without a word.

We notified the grievance coordinator, who is simply the officer they have running the grievance packet from place to place physically. She told us the 10 day rule was just so that the packet could go on to the next person if one person didn’t DO anything. So there isn’t even going to be anything DONE to the schmuck who ignored the deadline! He’s the one who has been CAUSING the entire year+ worth of issues in the first place, and if he knew he wouldn’t be punished for ignoring the grievance, then why would he bother responding to it in the first place? Of course he wouldn’t!

So now it is in the hands of one very last person, the final person, the ultimate person, the head honcho. She said this is last decision, that what he says goes, that is what sticks. His decision is being sent via certified letter, but it will not have an explanation in it, just the statement. If we disagree, we can wait a few days and then call and ask to talk about it.

That made it abundantly clear that she already knew what decision has been made. We brought up the fact that termination cannot be done be it’s illegal; they only had 120 days to act on that Fitness for Duty evaluation, but that eval was done a YEAR ago now! 120 days are LONG over, so terminating is not an option.

Her response was that they said the 120 rule does not apply in this case because “termination is not a form of discipline.”

Uh, really? Then what is it?

The attorney said she is completely wrong of course. He repeated the information he has always given us the entire time, read straight from the Arizona Revised Statutes/state law book. This guy has been representing the highway patrol for years, not to mention he was a cop.

So, right now we’re waiting for that certified letter to come in the next few days. We know what it will say, though they will give no excuse, and that it will use that bogus Fitness for Duty evaluation from a year ago from that CD/Psych who had it out for him from the beginning, the eval that legally no longer exists. CD/Psych by the way, we have learned, every time she does a Fitness for Duty eval, she always declares the officer Unfit for Duty. And every time she has been challenged in court for them, the evaluations have been overturned.

Let DPS dig their hole deeper. They have been digging it deeper all the time. It was illegal to try to bill us for their share of our insurance. It was illegal to send that letter trying to get a doctor to say DH was disabled so he would go on FMLA. It was illegal to send a letter saying they were planning on terminating him because they felt he was mentally disabled (ever hear of the Equal Employment Opportunity Commission? We filed a federal complaint as well for that letter).

After we get the certified letter, LEMSC will put us on their court system docket. They are the system all the police departments have to answer to. If LEMSC tells DPS to put DH back to work, that’s it. They will investigate why the grievance was not handled properly.

I never imagined anything like this would happen to us. Sure, I know something could happen to us as victims of a crime, if a stranger did something to us. But never did I never think it would come from within, from a family, from a brotherhood. From people that are supposed to stand by one another, back one another up in emergencies, be willing to give their lives to save each other. Instead, they are doing everything to slowly destroy our entire family, all the more disgusting when they know us so intimately well. They know all about my surgeries. They know full well what they were doing when they were trying to take away our insurance, given there is someone in the house with 2 major disabling conditions. They should be ashamed, and one day they are going to answer for what they did; it may not be to us, but it will for sure be to a higher power, that much I know.

If it was the day before DH’s hernia surgery and he was at work and killed in the line of duty, which we all know full well is a reality in this field as there is an officer killed every 52 minutes in the United States of America, the Powers that Be would have stood at his funeral, saluted, and worn a black band across their badge, pretending to mourn. They may have even issued a statement about his history, releasing all of his awards, appreciation letters from the public, and commendations. What a difference 24 hours makes, right?

But instead, this is the reality of what we are dealing with: living in a house that is too cold in the winter and too hot in the summer, never knowing where our food is going to come from or if it will at all, skipping doses of the meds I need, wondering how much longer we'll have a roof above us.

All because of a one-time reaction.

19 years

Today is always a little sad, and a little strange now that I am grown.

19 years ago, I was a 13 year old girl in junior high. One of my friends from the orchestra/band was 14--so of course he was cooler than I was--Ryan had good grades, came from a divorced home, had a brother in high school, was intelligent, nice to anyone and everyone, and always had a smile.

But 19 years ago, during band practice he asked for a bathroom pass. Of course, Ms. C, his favorite teacher, granted it. Ryan had never, would never, mess around or dawdle.

Nobody expected that he wouldn't return, the sound of a single gunshot, our science teacher running into the bathroom, coming out with his hands covered in blood.

Ryan has been gone for 19 years, a period of time longer than his entire lifespan of 14 years. It is strange, sad somehow, that at the time he was cool, like a big brother of sorts, someone to look up to. Now, as a grown woman, a parent of an 8 year old son and a 7 year old daughter, I am sad for Ryan, the little boy who never had a chance, the young man who never had a chance to grow to his full potential, who never got to know that whatever it was that drove him to take his life, there was a way out somehow.

No matter how long he has been gone, Ryan is forever a 14 year old boy, ready to offer a kind word and a smile to anyone in need.

2nd procedure

Wednesday I had the other procedure done. I had some diverticulosis, which surprised the doctor since apparently it's rarely seen in someone so young. Another area had a 'cobblestone' appearance to it, which is a common sign in Crohn's disease, so it was biopsied to check for that. I'm to call the office on Monday to go in and see her this week to get the result of the biopsies from this and from Friday's thing as well. I'll post some pics & descriptions below.

Just a reminder from those newer to the blog, but I have had a CafePress site since Christmas Day 2004. Wow, time flies doesn't it? There are lots of things to pick from to spread awareness for Chiari & Syringomyelia, for both patients, family, and friends. 100% of profit goes to American Syringomyelia Alliance Project, a 501(c)(3) who awards a $200,000 research grant every year, and publicly releases its findings. As you are likely well aware, the government has fallen far behind in helping fund a cure; more people have CM and SM than MS, Parkinson's, ALS, and Huntington's Chorea put together, yet those disorders (which certainly need as much research as possible of course) have had a couple hundred thousand research grants funded by the government, while CM & SM have had ELEVEN. Not eleven thousand. 11. And those were completed by the same 3 researchers (no fresh minds or ideas brought in). This is where ASAP has stepped in; they are funded largely by the public, so projects such as patient fund-raisers like my own, going strong for 5 years now, are critically important and support from people like you mean the world.

When you shop at my store, not only do you spread awareness when you wear or use the items, you directly fund a cure for these disorders, as I give the profit to the Research Fund. All you need to do is look at the side of the page and click on the graphic for CafePress.

Diverticulosis


Cobblestone Appearance, possible Crohn's


Esophagus Rings, sign of food allergy disease


Gastritis, red inflamed tummy

Today's stomach exploratory

Cross-posted at FB:

Got initial all-clear, then got report with pics and details. Tummy lining was swollen, so a precautionary biopsy was taken; esophagus was inflamed and had rings up & down it that shouldn't be there, so that was biopsied to check for eosinophilic esophagitis, a food allergy disorder. The duodenum had scalloping, a sign commonly found in yet another food allergy disorder.

I had some PTSD issues (from my CPR/ventilator experience) when I saw the propofol, but my doctor held my hand till I was under. She's a real nice dr. The next procedure is on Wednesday.

Stomach's cramping, my throat's torn up pretty good, can hardly swallow. I didn't get to take my Dilaudid & Methadone (or the rest of my stuff, muscle relaxers, etc) for 12 hours (I always take them every 4 hours) so my head & spine pain is way out of control. After going that long, it usually takes a couple days--a LOT of doses--to get any degree of relief again. The stomach & throat are frustrating and uncomfortable. My head & spine make me want to take everything I have because I can't see straight through the pain. But I know better. So I'll just keep distracting myself, & as Dory says, just keep swimming, just keep swimming...I know it came to pass. It didn't come to stay.

Procedures and loneliness

I love that despite having dozens of local people I know on FB, and that I have shared about Friday and Wednesday's exploratory surgeries multiple times (quietly though, trying to keep my PTSD to myself; nobody can understand having survived CPR--twice--, all the time on a ventilator, finding yourself on one, dealing with being strapped down to a bed, weeks on end in a hospital, fighting your way back to life learning to do everything over again like a baby--and no one knows because they're two hours away, or cares I guess because nobody ever called either so was pretty much left for dead anyway; so have panic attacks every time I'm in a pre-op area, having done it 16 times, thinking am going to wake up in the middle of that experience again), but not once has anyone even acknowledged what I wrote. No good luck. No offer of help with the kids going to school, or bringing them home (I actually asked for help though, can you believe it, had to, since we have to be at the hospital way before the kids ever even have to be at school), no prayers they'll find the answers so my body can stop going through all this additional pain and weight loss. Dr said it's at a critical point now, I can't risk losing any more, not with everything my system already deals with every day.

I'm considering just shutting down the whole FB thing. I was asked to go there so people could keep up with what's going on w/me. And as I suspected, I don't think many can handle the reality of living near someone with a disease that is a slow killer. I've been told it's good for them to be confronted with that reality, like it or not, to get used to the fact that someone nearby is living with this type of pain 24/7 right next to them, that maybe some of them can learn from it. That is the only thing that has kept me posting. But all the times I get ignored, it makes me all the more lonely.

Guts update

The H. Pylori, bloodwork, CT w/iodine, and gallbladder ultrasound are all over. Strangely enough, though I've had iodine before, I am now officially allergic to it, having had a full-blown reaction to it in the machine while the IV pump was still injecting it in. During the first pumping, the roof of my mouth, my hands, and some other areas started to swell and itch, and I thought, this can't be happening?!? And they immediately said they were starting the machine's 2nd pump injection and there it went, and it all got worse and spread. By then they knew something was wrong, I jumped upright, had the tremors like I was in drug withdrawal, grabbing at myself all over from the itching, trying to pull my skin off, and saw someone go running out of the room. She returned a moment later with the facility doctor. Sigh. Fun fun.

So, somehow, it's all come back normal. No ulcer, no celiac, no tumor, no gallstones. However, yesterday I met with the gastro doctor for the first time, and she said the CT was a very poor way to check my body for the symptoms I've been having. So, on Friday I go to the hospital and get put under so she can take a look around my stomach, esophagus, and duodenum. Then I go back to the hospital Wednesday, the day before Thanksgiving, for a colonoscopy. Gee, aren't I looking forward to Tuesday's drinking prep for that one? Ugh.

Gastro said these tests will show what the others things I've done so far won't, things such as lesions, polyps, etc. We trust her. Other than my urologist & my pain man, this is the first dr who has ever known what my Chiari & my Ehlers-Danlos are. She was pretty shocked by them both. She's not had any patients with them, nor has she ever even heard of a female with my EDS before, but she's willing to take me on, 16 surgeries and all, and dig her way through all that scar tissue inside me with these two exploratory surgeries to figure out what is going on.

Now, to get through being in pre-ops again twice in the next week without a major panic attack. Like that's gonna happen. Thanks a lot, PTSD.

Meet neurosurgeon in a.m. re: brain rejection (rephrase: brain/spine rejecting hardware, not rejecting brain) & shunt surgery. Also have H. Pylori testing. Days & tests will drag on to slowly rule out what Dr is worried about-cancer (colon/stomach/pancreas), obstructions, perforations, until we find answer. I wonder if... the drugs I've needed 24/7 the last 5 years to control my brain will end up killing the rest of me.