The Talking Head..

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

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

Letter to Pain Management

I don’t know how to articulate my feelings and experiences in the small amount of time that we’re allotted.  I wish I could take you home for a few days to see exactly what my life is like and what I go through. It’s not obvious in a half hour appointment where I’m simply sitting there and chatting. It can’t even scratch the surface.

A recent blog post of mine:

I’m tired of dying every day and being uncomfortable in my own skin. Of watching the light fade from my children’s eyes as another mention of “not right now” whispers through their ears and the ensuing frustration and defeat that washes upon their faces… my kids need me now. My hubby needs me now. My mother needs me now. My family needs me now. Tomorrow might not get here and time flies, moments pass, needs go unfulfilled looking for outlets and something to fill the void from avenues best left discarded.

I remember those times. My children are there now and yet I’m here, I see, I know, but I’m not present and I see this being fulfilled while my body falls apart and my mind wants to spiral. To be so dependent on a stinking little pill to wash away the pain and fatigue yet such controversy on something so tiny that gives me life in a way few will understand. No high needed or received, just relief, blessed relief from the torture my body inflicts upon me. Some days, not near enough, leaving me so despondent, I rather wither away and free my family from the burden I feel I’ve become.

The negative thoughts and heavy weights weighing them down like a chain around their necks in a sinking ship lost at sea. To free them. To free myself. To put an end to the drain on this life and allow healing to begin and forward movement on their own journeys this life will bring. May they never be saddled with these illnesses that grip me so tightly, squeezing the life out of me. But it’s heritable. It’s the gift that never seems to end. One generation to the next. My burden, my cross to bear laid upon the shoulders of my tender children and the guilt that consumes me because of it. My fault.

So, I have a heritable connective tissue disease.  Not a drug seeker, an overly anxious pans positive female, somatic symptom disorder, attention seeker, no, I have a disease. I’m an actual Zebra amongst horses with a rare disease that finally explains all of the health issues I battle. 19 years of wondering what’s wrong and 12 years wasted when a prior doctor recognized the connective tissue disease, documented it in my record, but never told me and never sent me for further testing to finally put to the bed what ails me. I could have avoided so much misunderstanding, so much frustration, not knowing what truly is causing all the health issues I’ve been fighting.

It’s frustrating that my life revolves around a little pill. But that pill works so well, when at the right dose, that it gives me a few hours of my life back and my ability to tend to my household, my kids, my family. I can’t remember the last time I cooked dinner as I have terrible lassitude and am usually done for the day by 2 to 4pm.

Researching Ehlers-Danlos (the probably type I have), it can indeed lead to severe pain and that pain can be for life as it’s progressive and gets worse over time. It’s only symptom management as there is no cure and no treatment to make it better. I’m still trying to wrap my head around this as I’ve always had hope that one day, I will reach remission. One day, I’ll have my life back for a little while, but these last 5 years and finding out what truly is going on has shown me otherwise so I’ve been stripped of that hope of remission and I’m not sure I can handle that if that I don’t have relief from the pain and fatigue that weighs me down and runs my life. It is severe. I look so normal and so well, but inside, I’m falling apart and crippled in pain. I’m on my butt or back 95% of the time.

Occasionally, I get a good day. It’s happened only one time this entire year. I played catch up and worked on my garden, a task I’ve always taken delight in. Oh how badly I’m paying for that day. That’s my life.

I cleaned part of my bathroom the other day and paid for 3 days from simply cleaning my mirror, counter, toilet and tub. A task often neglected until my hubby can get to it or my daughter surprises me and cleans it for me. Summer is always better on my pain symptoms but much worse on my POTS symptoms but 6 months out of the year has been the most miserable years of my life and I’m not sure I can handle another winter without the pain relief. It’s hard to hold on to life when my quality of living is in the toilet and the pain consumes me. I know the market is volatile right now. There are groups out there fighting for us. Fighting for our rights as chronic pain patients to live as comfortably as possible while struggling with chronic pain. I’ve exhausted my options and found what works best for me on multiple levels as it helps my IBS-D, bladder, pain AND fatigue. I really am the rare patient when a pain med, which makes others sleepy, actually helps my fatigue and gives me some energy to keep on pushing through. I’ve been at the same dose for a long time now. I haven’t built a tolerance, but my pain has gotten worse. This is my life and all that I have to look forward to. I need to know that my pain can be managed. That I can be as comfortable as possible at least while my kids are young and need me now.

I’ve read that, as a palliate care patient, writing “palliate care” on the prescription should exempt a patient from the ‘recommendations’ given by the CDC. Hopefully soon that will change for all pain patients as we should never have to live in severe pain without relief when there are medications for this very thing. I just wanted to share what is hard for me to articulate in person. This is my life. 

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?

 

My Feelings on BIP.

I do like a little reality TV. The Bachelor franchise is one of them. Who knew? I’ve been watching the show for years. Must be that childhood fantasy of falling in love and my big wedding ideas and all that gushy stuff. I like to see if my emotion reader is on target and if I can pick the right top four. This season of BIP…. I don’t know what the hell happened. Seriously. Here’s my post (pending) to the BIP group on FB, membership of 21,000 fans.

I’m starting to think this show and it’s producers are reminding me of ‘The Purge’ with a mix of ‘Mean Girls.’ A group of grown ass adults playing catty and deciding who’s going to take the fall this season and who’s going to be elevated to fame and most likely all based on their own personal opinions of the cast members. I’ve never seen such bullying set up by a TV show in all my life. Purposeful situations to, not only create drama, but destroy peoples reputations, relationships, and more. How much did these cast members sign up for? Did they know they’d be set up like that? Would they have gone on had they known?

When you read about some of the cast members receiving death threats and hate mail, it’s kind of sobering. ABC knows what they’re doing. It’s like yelling fire in a crowded room and then thinking nothing bad would happen. I thought we were trying to change our world? To rid bullying. To rid hate and intolerance. But yet, here we are glorifying bullying, hate and intolerance. We applaud the double standards and expect special treatment for some. There are rules and then there’s not. We bend it to fit whatever agenda is being applied.

I watched Blake walk into a trap. I watched his face turn white when he realized he was being set up by the producers, his friend, a lie. All for a simple mistake that many of us are guilty of ourselves in some form or fashion. And then applauding similar behavior from those ‘we like.’ Because it fits are narrative. So many examples that I could use this season.

I guess seeing Clay’s ex girlfriend walking down those steps set to destroy another’s relationship, create drama, was the straw that broke the camels back for me. I thought this was a show to watch people fall in love. The fantasy being enacted for all to see. To watch people build that relationship that later leads to a wedding on the show. To see that simple Dream unfolding with all the glitz and glamour, the original reason I watch the show, is slipping away until it’s nothing but a free for all drama fest with fights, bullying, and set ups that truly do destroy lives. That is not ok with me. That’s not what I signed up for.

And yes, I can simply change the channel but I also wanted to talk about this because people are getting hurt. There are too many crazies out there that really are sending death threats and bullying cast members of the show and honestly, I don’t think any of them signed up for that.

So that’s my post. Let’s see if it gets approved and see what kind of response I get.

The Walk of Death

How the hell did I go from speed walker (with long strides) to jogger to walker then walker of death with a stooped shuffling gate with tiny short steps. I call it walker of death because the more I walk or stand the worse my flare up of pain will be.

As stupid as it is, simply walking to my daughter’s classroom tonight has left me in significant uncomfortable pain where no position is bearable. This is my life. The pain can get so intense, it truly feels like the life is being sucked out of me. I feel like I’m dying. Whether literally or figuratively is yet to be determined because, honestly, I truly wonder.

Maybe one day I’ll have relief. One day, I’ll have answers. I know that I need to be strengthening my joints, muscles to support me. Having ME/CFS kind of ruins that. Having severe pain with activity ruins things. I need more pain relief, as I’m left struggling to simply exist, not to make progress..

I miss my life. It’s slowly sucking even my mental facility and ability to process and think as quickly as I use to, out of me. Feeling it being taken away, piece by piece, slowly but progressively and yet no one can tell me why.

My life certainly hasn’t panned out the way I imagined. Redefining my entire future, dreams, hopes, aspirations…. where will this walk of death take me? How can I prepare if I’m simply going off instinct with no previous paths to follow or glean insight from..

The List…

Diagnoses awaiting Genetic Testing suspected:

Hypokelemic periodic paralysis

Ehlers-Danlos (Or other heritable connective tissue disease)

Dystonia

Episodic ataxia (type 2(?))

I am a Zebra. Even when having a full on flare up of Ulcerative Colitis before I was diagnosed, my blood was normal. Full inflammation throughout my body and not one sign of it in my blood. Even my CT scan was completely normal when it shouldn’t have been. I am a Zebra. Inflammation does not show up in my blood. My Rheumatoid factors are completely normal other than a high IgA which I was told, meant nothing.

How does one prove they are ill when their blood is completely normal? So many times I’ve been completely dismissed because of this. Even after explaining that I am a Zebra.

Another very odd quirk is that I have bone inflammation on both femur necks along with bilateral labral tears. Typically, when one has arthritis, the cartilage is damaged. This is seen on xray and arthritis is diagnosed. My cartilage is completely normal. Excellent spacing. And yet my bones are inflamed. I have not one doctor explaining why and what this means. I only know the pain is simply excruciating. My SI joints show degeneration so arthritis is there. Does that explain the bone marrow inflammation in my hips? My hips, often, feel shattered. Completely and utterly shattered, the pain is so intense. And yet, my blood is completely normal. Having Ulcerative colitis, a theory could be seronegative inflammatory arthritis, but only my neck and SI joints are arthritic. No doctor has xrayed my knees in years. They feel like bone on bone in addition to the instability my braces are for.

So I have spent the last several years in so much pain, I’m no longer living but simply existing as my life has been taken from me. My ability to function is gone, except the odd good day that pops up and reminds me of what I’m missing out on. I long for the years I simply battled flare ups and migraines that took chunks of my life each month rather than the day in and day out suffering I deal with now. Though in 2006 and 2007, I spent those two years in a severe POTS flare up with fibro and ME/CFS but not the severe chronic pain like it is now as it was episodic in nature back then.

Waiting on genetic testing is frustrating and time consuming. Even though I’ve waiting 19 plus years wondering what all is going on with me and waiting a few more weeks is really nothing, considering, I just want to know. I just PRAY it’s in my genes so I have confirmation once and for all. I’m 100% that a connective tissue disease is at the root of a lot of my suffering, but not all of them will show up in the genes yet. It’s not heavily researched like other conditions. They’re working on it though.

Dealing with so many systemic illnesses without a definitive diagnosis beyond what I’m diagnosed with make medical care extremely difficult as those conditions are misunderstood and not well taught in medical school. A lot of doctors roll their eyes at the conditions and still think, “It’s all in their heads!” Even though science is showing, it’s physiological.

I’m the Pans positive patient. I never wanted that. The bias in the medical community is mind boggling, even though they are suppose to be taught to squash that bias and do no harm. They are, after all, still ‘practicing’.


Diagnosed Conditions not Visible
:

ME/CFS

Fibromyalgia

Chronic daily headaches

Anxiety


Diagnosed Conditions that are visibly diagnosed
:

Ulcerative Colitis

Interstitial Cystitis with petechia

Migraines

Emphasema

Lung nodules

Brain lesions

GERD with reflux and episodic blood in the stomach

Stricture in esophagus

Bone inflammation in femoral necks bilateral

Bone Marrow inflammation in hip bones

Swollen lymph nodes in groin, upper leg, behind neck (Over one year now)

Enlarged prolapsed uterus

Rectocele- repaired

Hiatal hernia- repaired- now sliding

Appendectomy- necrotic

Gall bladder removed

Aorta at upper limits of normal

Strabismus with excessive floaters and astigmatisms

Tendinitis multiple sites

Kephosis and loradosis “Flat back”

Variable blood pressure with spikes and drops

Tachycardia (POTS) with skipped beats, PVC’s and others

Mitral Valve Prolapse with regurgitation that is progressed

Prior prolapse of other valves with regurgitation self corrected

SI joint that was out of place and pushed back by Physical therapist

Glut muscles that have difficulty activating along with a leg muscle

Repetition fatigue in limbs that is measurable (little exertion)

Joints that are loose

Receding gums with multiple skin grafts that mostly failed

Bicornate uterus and tipped bladder

Short pinky toe

Very narrow wrists can wrap fingers around

Extremely narrow rib cage

Forward tilted hip with one side dropped

Often low potassium, sodium, Vit D, Calcium (once), ferritin

petechia spots on skin

Episodes of bleeding- IV sites, giving birth, spitting blood

Blood clot in umbilical cord (we got lucky)

Both children had very short cords, small placenta and wrapped around neck

Low side of normal bone density in hips

Stretch marks that are excessive for weight and atrophic

Bartholin gland issues- multiple surgeries

Muscle spasms

Fasiculations

Body Twitches

And More….