A Company, A CEO, Editors and A Cause..

Edit: I submitted this as a “P.S.” to Mr. Porath via LinkedIn messenger. Here’s hoping that he hears it:

P.S. I have informed the editorial staff for contributors that the story was initially submitted for publication and correctly formatted on May 23, 2020. I have asked that they, if they go ahead with publishing, that they insert that information at the top of the piece as an edit. The idea behind the story was submitted as a “thought” because I knew, somewhere in me, that it would get pushed back and didn’t have faith that it would actually be published in a timely manner. The knowledge that it was submitted last month needs to be included, though, so that the community understands that I did not personally have a say in publication and that I did submit it early so that people could have time to comment. The CDC requesting to actively hear from pain patients is almost unheard of. That being the case, as I said in my original letter, I wanted to offer the pain community as much lead time as possible. I hope this finds you well and I hope you can affect some sort of change going forward to prevent this from happening in the future.


To my audience:

I received word today that a story I submitted weeks ago to The Mighty​ was going to be published. While not inherently bad news, the story’s subject matter had an end date: 06/16/2020.

I received this notice of publication today, an hour ago, the day before the end of public comment acceptance. I am writing this so that you all know that I 1) had no part in the story being pushed back, 2) submitted it weeks ago so that people could gather documentation and whatever else they needed and 3) am incredibly disappointed that this is the second time this has happened to an urgent post. The first time happened regarding the first annual Don’t Punish Pain Rally. The Mighty waited until about a week before the rallies were held nationally. By that time, very few people could alter their plans to attend.

I sent the following letter to Mike Porath, the CEO and founder of The Mighty, via LinkedIn. I want this public because I want you all to know that I am trying to help us.. but I am, even within the ranks of our community, coming up against intense resistance.

Hi Mike. Pardon the straightforward nature of what I’m about to say, please.

I’m a contributing writer for The Mighty and have been for some time. Weeks ago, I learned about an open call to the chronic pain community to speak to the CDC about how opioid medications have helped their lives. The end date for those public comments is 06/16/2020. The reason this matters is, again, because the story was submitted weeks ago. I understand that The Mighty is short on editors, but this story was also marked as being tied to breaking news and urgency.

Today, 06/15/2020, I just received notice that the story will be published. When? I don’t know. The date of publication was not included. This is the second time that this has happened. The first was involving a very public protest by the Don’t Punish Pain Rallies. That story was published with less than a week left before the protest and most people could not make it because of that.

The story regarding the CDC comments needed to be published earlier than this by far for several reasons, chief among them that the people who need to speak are also the people who are hurting the most and need time and spoons to compile their comments. One day is not enough lead time, and that’s assuming that the story is published today.

As well, out of the 40 million reported pain patients in the US (chronic/intractable pain specifically), a little over 3,000 people have commented. Some are probably family/friends of the pain population, some are probably providers advocating for suboxone (which, by and large, does not seem to cover chronic pain as advertised).

Out of those 40 million, there are an estimated 7 million who have been thrown off of their medication, by and large due to the CDC’s misclassification of opioid overdose deaths. This wave of patient cut-offs has lead to further overdoses as people seek other pain control methods, strokes and heart attacks due to pain and, worst of all, a rash of pain-related suicides. The Human Rights Watch has written no less than four reports on the issue and its effects on the chronic and intractable pain community as well as looking at the United States CDC for possible human rights violations. We know at this point that the CDC has admitted that they “fudged” the numbers and they have insisted that they, while not rescinding their guidelines, are only guidelines, not law. The DEA has begun harassing, threatening and prosecuting pain providers en masse, causing further overdoses, suicides and other health problems for pain patients… simply for treating their pain effectively.

Again, my apologies for the straightforward nature of this, but I want to explain how much of a human rights issue that this is and has become. I am beyond disappointed that this was pushed back so very far to the point that most, if any, people who see it are not going to have time to comment. This is a loss for us and it is going to anger my specific readers as, this being the second time, they are going to think that I personally waited.. when in fact I pushed to have this published weeks ago.

Short of contacting you and putting this letter up on my public page, I don’t know what to do. This cannot continue to happen. Pain patients are already marginalized, neglected, mistreated and often left to die. I want badly to see that The Mighty still has us at heart and is wanting to help fight for us as hard as we need them to.. and as loudly as possible. We cannot afford silence or complacency anymore. Lives are being lost.

Thank you for your time and I hope that you read this in its entirety.. and I hope that you please understand that I am not making a personal stab at you. I am begging you to please use your position to make a difference in the lives of millions.

Sincerely,
Mikki N. Ingram,
Contributing writer for The Mighty & Medium,
Intractable pain patient (hypermobile EDS),
Disability and pain advocate

===========================================

If you are a pain patient or advocate and wish to contact Mike, his LinkedIn page is below. If you, like so many, needed more time to comment on the CDC guidelines and did not know and maybe would have known had they published this story earlier, please let him know. I have posted the link to the CDC’s comment page before, but I will post it here again.

https://www.linkedin.com/in/mike-porath-00347820/

CDC’s public comment URL, deadline 06/16/2020:

https://beta.regulations.gov/document/CDC-2020-0029-0001?fbclid=IwAR0LKVOh4GyCdnCw3SlyZI6Hud4Tru0ppjWjr9wHpiErgac_Ky616cSa7oo

Medical Neglect, Fear, Trauma and Newly-Added CPTSD

mikkidark2020march

Last year, something happened to me that I was really not prepared for. Then again, I don’t know how one really prepares for facing the reality of our own mortality or a pain so incredibly, exquisitely bad that we’d rather be having multiple things at once like childbirth.. another childbirth.. and gallbladder attacks.. instead of that pain.

That was my summer last year. It began in August, shortly after my daughter (God bless her) called me and we began to talk again. My beautiful baby girl is now a beautiful young woman. She is remarkably brilliant and bright and strong. She has more stubbornness in her than she knows, but she also knows where she got it from (thankfully). I’ll digress, but let’s just say that I’m incredibly, unbelievably proud of her.

So, last summer.. my prior-to-this-post post went into a lot of detail. At that time, in October of last year, we didn’t know what was happening. We had no clue. I went, recently, to write an article about it on The Mighty. Unfortunately, The Mighty is shorter than ever on editors and my would-be story was turned into what the site is calling “a thought”. To me, it looks like a soon-to-be social media platform that is specifically geared toward chronic illness, mental illness, rare disease and chronic pain patients. This is not a bad thing. Please don’t think it is. This is crucial. We need support more now than ever (see my pinned Twitter post here) as chronic and intractable pain patients and chronic illness/rare disease patients. Just tonight, a “doctor” told patients listening to her podcast or web show that “opioids will go extinct”. This was such a naive and dangerous statement to make. Human beings have utilized opioids safely for thousands of years and, in the documents (most of which are written by healthcare professionals and government entities) in that pinned post, there exists a very common mentality: prescription opioids are, by and large, safe for use in the chronic and intractable pain community. As well, the actual rates of opioid addiction in prescription opioids is lower than is being reported. Finally, the people who are becoming addicted to prescription opioids are a) usually not using them as prescribed, b) often stealing them and/or c) have an actual genetic predisposition to addiction (which is between 1 and 3% of the population who utilizes those medications). Hopefully, people will start acknowledging the major differences between addiction and dependence, dependence being similar to a paralyzed person utilizing a wheelchair as a mobility aide.

Moving along: I managed to compress what happened to me into a Medium article here. Every word of it is true and I am absolutely going to stand by this. I am currently seeking legal representation to address the egregious medical neglect that has resulted in what may be permanent nerve damage and nearly resulted in the paralyzation of my left leg.

I hope that, during this crisis, everyone is actively avoiding putting themselves into dangerous positions. Please keep your safety at the top of your priority list. Every one of us matters. Please follow the directions of your state and local governments regarding safety instructions, even if that means you don’t go out because you are in the “vulnerable” group. My husband and I are both in that group and, after having seen how quickly people with Ehlers-Danlos Syndrome are contracting the virus as well as a secondary pneumonia and how hard it’s hitting them, some of whom it has undoubtedly and quickly dispatched, I have no interest in subjecting myself, my husband and my family to that kind of trauma and grief. Please wash your hands. Please wear a compulsory mask whether you have the virus or not. Most of the countries who are ahead of the viral curve all have one thing in common: mask-wearing has been compulsory since the beginning. 

If you cannot procure masks, I have included some helpful links. 

Here is a link to a Facebook video (in Czech language, but you can follow the video cues) on how to make an at-home mask without sewing. Materials are a pair of scissors and an old t-shirt.

Here, also is a picture depicting how to clean that mask without breaking down the fibrous material and protection of that mask:

maskssavedreused

I hope that this information helps all of us. I hope that we are all here at the end of this. To those of us who are receiving a stimulus check, I encourage you to please spend it on necessities. Pay rent, mortgage, purchase groceries, pay a bill. This should not be used for frivolous spending. Now, I cannot in any way tell anyone what to do as I am not anyone’s parent but to my own children, but I am absolutely going to make that suggestion. Whatever you do with your money is absolutely your business. I hope that, no matter what, you are all safe and prioritize your health and the health of those around you. Those of you who are not in the “vulnerable” groups, please remember that it is not just your health at risk when you go out.

That’s all for now, dears. I pray safety and blessings for you all.

A Sharp Turn

Wow! It’s been a while.

I’m so sorry I haven’t written in a while, dears. Some bad things have happened. Let’s see if I can break this down.

Around the beginning of August, I started feeling a tinge of pain in my left lower back and hip. I was only limping a little and honestly thought that it was just by back going out again (that would be the second time this year). 9 days later, I was in the local urgent care getting an x-ray because the pain was excruciating and I could barely stand. The poor staff at the urgent care (hereafter “UC”) was so terrified. My blood pressure (hereafter “BP”) was through the roof and, at one point, two nurses had to catch me as I started to fall. They knew what Ehlers-Danlos Syndrome was and were concerned that I may have dislocated my hip. After the x-rays came back, lo! No dislocation! YAY! Right? Yay?

Nope. No such luck. They sent me home with a shot of toradol and told me to get to an ER if it got worse. Well, three days later, it got worse. After trying to figure out what ER would actually offer me the best treatment, we went to a hospital that was 45 minutes away. The staff at this hospital was remarkably kind. They helped me get a wheelchair and made sure to offer me ice packs to calm the visible swelling on my lower lumbar and sacral spine. My BP was, again, high. The ER doc came in and was immediately a jackass.

As I was sitting next to the patient bed, unable to do anything but lean forward and sob, occasionally scream, he looked at me annoyed and said, “So, what’s wrong?” I explained to him that this was the 12th day of this pain and inability to walk. I hadn’t been able to lay down. He asked me to sit on the table. As I sat, screaming and sobbing, I tried to explain to him that I have hypermobile Ehlers-Danlos and that it may be a vertebrae that dislocated. He swore he knew “all about” EDS and began yelling at me (in front of my panicked husband no less) to lay down. I reiterated that I couldn’t. He had me move to my other side then. The only way I could do this was to get off of the table, walk to the other side, sit down and lean. Attempting to lay down was beyond excruciating.

He insisted that I couldn’t have dislocated my hip anyways because “no one just dislocates their hip for no reason”. Red flag: Yeah, they do. They’re called hypermobile Ehlers-Danlos patients. Hi.

He poked my hip twice, which caused me to scream, before saying, “It’s just sciatica. What do you want me to do?” I asked if there was an ortho doctor on site. He said there was. I asked, “Well, can I see him?” I shit you not, this doc’s response was, “Ha! No. You couldn’t see him if your hip was shattered.” Nice. Really nice.

He had his nurse give me a shot (which literally brought my pain down one point and for about two hours) and discharged me, telling me on the paperwork to wait a week before contacting their chosen ortho doctor. Naturally, my response was “Fuck that shit. I’m not waiting a week.” The doc’s nurse, having overheard all of this bullshit, offered to punch him for me. I told her I appreciated it, but that I didn’t want her to lose her job. She responded, “Meh. There are better docs to work for.” Yes, love, there are.

So, after that debacle, I realized that I needed to go see my CNP. Now.. if you know me, you know that I didn’t like my CNP. He didn’t listen. He was arrogant. He didn’t read my chart. He didn’t know some conditions of mine that he needed to know. He was pushing dangerous-for-me treatments. For all we know, he may have killed one of our other EDS patients (No, really. She and I were talking consistently and she just dropped off the face of the earth after a surgery she’d had. I haven’t heard from her since or been able to find her. Anywho, I digress.

I finally got in to see the CNP. We had him fill out FMLA paperwork because my husband had been having to stay with me because I couldn’t walk reliably (and I still can’t). Flash-forward a month later. CNP refused to call in an upright MRI. The current MRI tech insisted that he call it in because I still couldn’t lay down and, when I tried to lay down for the MRI he ordered, I ended up hurting myself worse. The CNP, of course, refused. His reason: “It’s not going to show me what I want to see.”

This is a problem. The CNP had already referred me to the local spine clinic. Why he was worried about seeing anything is beyond me. But, because of him, I had to cancel three appointments with the spine doctor. The spine doc couldn’t see me without imaging and, since I didn’t have any imaging, well.. you get it.

Anywho, the Spine doc ended up having to order the upright MRI. Apparently, he tried to get the CNP to call it in but to no avail. I still don’t know why. But, this let me know that I needed a new primary and fast.

So, I went to get one. While waiting to see my new CNP, I saw her substitute. Of course, my pain flared in her office. My BP went to 163/105. The pain was that bad. The sub CNP knew it. She initially offered to increase my meds to help me better control the pain. She also offered to prescribe me something to cut down on my immobility-induced adema.

Turns out that the diuretic may have given me anaphylaxis due to an allergy. Also, that CNP suddenly wrote me a letter insisting that my behavior in her office was inappropriate and that I needed to be on psych meds (no, I’m not kidding). I begged her not to dismiss me, told her that I was confused and even told her that I’m in therapy every two weeks.

She proceeded to call in three different medications in the span of four days, cancelling them all, panicking my pharmacist, confusing me and eventually causing me to file a formal complaint with her office manager. I have never seen a CNP do this. My pharmacist said, “I don’t know what she’s doing, but I feel bad for you.” The CNP also deleted my current use of my pain medications (that she hadn’t prescribed) and tried multiple times to delete my Ehlers-Danlos diagnosis, stating that she didn’t believe it and that I didn’t exercise (even though I’d finished telling her in her office how I was trying to keep up with my exercises).

I finally got to see my new CNP. She listened to me. She acknowledged me. She looked at my appointments in the past and upcoming and said, “You’re doing everything you need to do and can do about this. You’re sure it’s an injury?” I told her, “I am 100% positive that this is an injury. My goal is to get this fixed and drop down to the lower med rate that I was on. This is a lot for me.” She said that, while she’d love to be my primary, she couldn’t currently due to the high dosage. She set me up with an internist, told me to keep my upright MRI appointment and my spine clinic appointment. Then she filled my medications to prevent further injury to my body. SHE is a GOOD CNP.

Now, while this is going on, my husband was supposed to be working up to 16 hours per week from home. It’s not a lot, but it’s something. Well.. so we thought.

His boss decided two weeks ago that he wasn’t going to allow him to work. His last check, even though he makes $33/hr.. was $50. After taxes and health insurance premiums. Yeah.

Today, he was told he cannot work from home any longer at all. We had to find someone to come sit with me two days a week so that my husband can go work two tens a week. He is going to be on intermittent FMLA and be at home three days a week instead. We’ve had to borrow against his 401k to get through and I set up a GoFundMe.

Normally, I don’t like asking for help. Normally, we’re the ones who offer that help. But, there is nothing normal about this. Had that ER doc sedated me and had me in a CT machine for five minutes, we’d at least know what was wrong. But, we don’t. Because of that and because my former CNP let me sit here injured, there’s a high probability of permanent damage.

So, I’ve taken today to getting a FlexJobs account. I need to do something. I’ve also made an offer to sing a cover of any song requested by anyone who donates to our GoFundMe if they want one.

I’m including the link to the GoFundMe (which has a much shorter recount of this tale of awfulness) if you feel that you can help. We still have copays for doc visits and meds and they aren’t cheap, as I’m sure you know. We need to get this fixed so that I can get to walking without having to be watched and my husband can get back to work.

Even if you can’t donate, please share this fundraiser. As soon as we know what the injury actually is, we’ll be updating it.

So, there it is. I hope that fall is being kinder to you all and that those in pain are having it managed.

OH! P.S.

Tonight, on Dr. Drew Pinsky’s podcast, Claudia Merandi and two pain experts will be discussing the consequences of the opioid hysteria to the United States’ chronic pain community. I highly recommend anyone listening who can.

https://www.gofundme.com/f/3tpqss-emergency-survival-funds?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet

Rock, Medicine, Disability and A Thousand Ideas From A Nobody

A nobody with a million ideas...

WARNING: LATE NIGHT DISABLED RANT

I was at the Joan Jett/Heart concert the other night. I’ve been in a wheelchair and using a cane for over two weeks now. They don’t know why. Just said “It’s your back”. Probably has something to do with my Ehlers-Danlos again. Anywho, as I was sitting there, carefully headbanging (it’s a thing) to Elle King, Joan Jett and Heart, I kept getting angrier and angrier. There were so many things, for starters, that made the venue not handicapped accessible. That was already something that was stuck in my craw (which I will be writing an article on soon; gotta call people out on this shit). I was, however, still working on letting go of my anger from the previous week.

It was the week of the local comic convention and we had purchased 3-day Passes months ago. Jason Momoa, Gigi Edgeley, Elijah Wood, Philip Glasser (FEIVEL… still geekin’ about that), Felicia Day, Jason Isaacs and Tom Felton (yes, Malfoy Sr. and Jr.) were all in attendance. I, however, was only half there. I was in a wheelchair. I couldn’t walk because of the pain. It was what we call an EDS pain scale level. Mine was about an 18. I ultimately ended up putting off urgent care for 9 days before finally going in, only to be told they were unable to help me and terrified to do anything for fear my hip was dislocated. But, getting back to it.

I missed the third day of the convention. I was so excited to meet so many people. Don’t get me wrong! I did get to meet Gigi and Philip (who were both AMAZING to chit chat with and get to know even a littl). I discovered two new authors (one who writes superheroes based on actual science fact) and I managed to say hi to Felicia Day. That was all amazing. People were very kind to me, but they all had that look. That pity look. A few had the “Oh, she’s in a wheelchair because she’s fat” look. I have a few things to say to them that they won’t appreciate, but moving along.

Going forward to the concert: I couldn’t rock out. It hurt so bad to move at all. I had to get up just to take pressure off my spine several times. This was after an urgent care visit, an ER visit (wherein the doc literally refused to listen to me while I was nearly screaming in pain and did no imaging/lab testing/caused me to pay $160 for a shot that helped take the pain down A SINGLE POINT for the next four hours), two sets of x-rays and an ortho appointment (lasting all of 10 minutes, just long enough for them to tell me that there wasn’t anything they could do because it was my spine, not my hip; spent more money there too).

Why would I be so angry? Well, music. Put simply. I was two years old when I had my first memory of singing. I don’t mean half-assing it. I mean singing. Like.. I’d memorize songs within a day of hearing them and pour my little heart and soul into them. The same thing happened with commercials (for the life of me, I couldn’t understand that one, but Mom was impressed). I remember, when Sister Act 2: Back In The Habit came out, this line stuck with me: “If you wake up in the morning, and you can’t think anything but singing, then you should be a singer, girl.” Sister Mary Clarence said that.. to Lauryn Hill’s character, Rita Watson. I learned the song His Eye Is On The Sparrow from that film and, God help me, I love it to this day. But that line..

After I graduated high school, I was getting (no matter where I moved to) full-color brochures from Berklee College of Music in Boston. I never understood why then, but from what I understand, my former high school choir teacher (Mr. Brian Dempsey, I remember you) had either sent in a tape of me singing or written to Berklee. They wanted me and, unfortunately, I didn’t know about student loans at that time. I just knew I couldn’t afford their tuition and I ignored the brochures. I regret it to this day.

Now, I’m officially disabled. I still sing. Not often, but some days.. it hurts me physically and emotionally to do it. Now, though, I also have other things that I want to do. I want to write an album and perform it on stage.. either in a wheelchair or with my cane. I want to increase disabled visibility. I know it goes against the norms, but.. has anyone here seen/heard/fallen in love with Lizzo? She defies every music industrial norm that there is and.. damn. She’s a force.

Throw on top of that.. I have an invention. I need specific people to help me make it a reality. It harkens back to Disney’s Robots, wherein Mr. Bigweld says, “See a need, fill a need!” I saw a need. Years and years and years ago, I saw a need. On my parents’ paper route (which I went with them on as a child), we delivered to a nursing home. I watched the elderly there suffering from wounds simply from having bandages removed. As I got older, I watched my parents caretake my grandmother. I saw the same happen to her. Then to my mother (she had Ehlers-Danlos, hypermobile and vascular type we know now). I couldn’t understand why, but any bandage was taking skin off. Layers and layers of it were just gone. In its place were seeping, bleeding wounds. I saw the same in the hospitals I’ve visited over the years while I waited for my diagnosis to be remedied from the false one I’d been given. The more I watched, the more I saw the need. I have the idea for the remedy.

I need someone with a specialty in adhesive chemistry to help me make it a reality. I have no money. I have no career. I write voluntarily for the publications I write for. But, I know that, due to the need for this being so high, we could make it for pennies on the dollar without sacrificing quality and sell it for pennies on the dollar and make massive profits. I’d be willing to go 50/50 with the person who helps me make this a reality. It’s such a huge need. I can’t even verbalize it.

The anger is there, though. I want to sing and loud. I want to help people with my invention. I want to make things happen that bring some semblance of joy to this world because.. I don’t know how many of you have looked around lately, but the world has gotten scarier than I have ever seen it in my little 36 years. The world is full of apathy and hatred. We need empathy and love.. and I have some to give.

I don’t need fame. I don’t need to be filthy rich. I need to help people and I know how to do it.. but, fuck all, I don’t have the means. Yeah, I know. “You’re not alone, y’know.” No, I’m not. I have people in my life who I love hard because it’s all I can do. But I’m not helping some people that need help badly.. because money. It’s always money that stands in the way. This isn’t even about my ability to walk or rock. Even singing, believe it or not, helps people. If I can lift some spirits, I’ll have done some good.

Jonny Lang said: “If I can only reach one set of ears, I know that I’ve fulfilled my purpose here to change the world, one boy, one girl, one person at a time.” I need to reach some people. I don’t think that I, by any means, have some sort of “I’m AMAZING” stamp on me. I just know that I need to do something more and I need help doing it.

So, if you’re reading this and you know a chemist with a thorough knowledge of adhesives, or you know how I can cut an album and get to performing without having a record label dictating to me, or ANY OTHER THING that I can do to help, please tell me now. Message me, comment, something. I’m here. I’m listening. I’m ready and I need to get on it. Here’s hoping that they can fix my back in the meantime. Fingers crossed.

Early Morning/Late Night Updates and Ouches

I haven’t written in longer than I wanted to.

As some of you saw, my daughter went missing in May. I didn’t find out about it until much later. We printed up flyers, we made her a website just in case she googled herself. I got some very strange e-mails during that time and, eventually, I found out that she was, in fact, no longer missing. She had been, yes, but from what I understand, she turned herself in after being considered a runaway for a month. There are so many questions that so many people have and, honestly, I’ll get in to the “hows” and “whys” and all that.. but not right now. She is safe and that is what matters.

Right now, though, I’m dealing with another threat that so many of us are all-too familiar with. My new CNP, who I have had struggles with already, is repeatedly proving his unwillingness to listen.

I’ve already told him about my yearly recurring issues which mostly focus around sinus infections (because yay! EDS means deviated septums) and my back going out once, maybe twice a year. My back already stepped out for a breather this year and it took entirely too long to come back. But, this year was also different. This year, there was a new bit of nerve pain with it. There was no reason or rhyme to it. It just happened. Well, once that cleared up, I stupidly thought that the ever-increasing frequency of incidents would not apply to my spine. Why did I think this? I have no clue at this point other than momentary lapse in intelligence.

So, here I am. It’s been over a month since my back began to threaten to go out again. Four days ago, something changed and the threat was made good on. Except, for whatever reason, it’s not my back this time. It’s my left hip. The same left hip that has been screaming at me for years out of nowhere (and with no results on film), the same left hip that we suspect has bone spurs (we already know about my cervical bone spurs and suspect them in my lower spine), the same left hip that is demonstrating the majority of the endometriosis symptoms. That left hip.

Now, I’ve already tried to talk to my CNP about endo being a possibility. The violent rape that happened to me in 2012 left me with severe internal damage and I was warned that my chances to develop endometriosis were going to jump because of it. Throw in good old-fashioned hypermobile EDS and random connective tissue issues and you have a winning probability for endometriosis. We aren’t sure if I have it (and I’m hesitant to have the discovery surgery for diagnosis), but it really, really feels like it. Yeah, I have a friend or three with endometriosis and they agree that the pain I’m getting sounds like the same pain they get from theirs. Of course, CNP’s response to me talking to my friends about our remarkably similar health problems was: “Psssh. Don’t do that. That’s worse than using WebMD.”

No, I’m not kidding. He said that. I don’t think he understands how many people are underdiagnosed and how many people who are undiagnosed have only their own symptoms and research to guide them to better care anymore. But, taht’s another blog post for another time. Moving along.

So, the left hip is now acting, for the past four days, like the tendon that runs down the back of my leg and and side of my left leg is trapped.. or stuck on something. Not sure what, but man can I feel it. For the first two days, I couldn’t point my left big to up towards me. Usually, no problem with that. Third day rolls around and suddenly, I can lift my left big toe but.. holy shit! The pain was intense!

Grabbing my lacrosse balls, a hot water bottle and an ice pack, I strategically placed the lacrosse balls so that they put pressure around my left hip socket, allowing some specific movement. I could suddenly feel the tendon shifting behind my left knee. That’s the first bit of progress I’ve been able to make. The hot/ice packs being interchanged helped to start breaking up the ever-tightening muscles around the tendon. No joke, I could feel the muscles clamping down on it.

I started strategically taking my medications. Which ones would help the most? Ibuprofen, tylenol, my muscle relaxer.. all of those. Yesterday, a breakthrough. As I sat there without feeling that excruciating pain (that had caused my pain to completely peak three nights ago), I almost started crying because.. damn.. a break! I thought I might be okay for the convention this weekend..

Now, tonight.. I woke from a two hour sleep (I can’t sleep in my bed, so I’ve been on the couch) and almost started yelling from the pain. It was back and it was so much worse. I was just rolling, stretching, clawing at the air, desperately trying to find that one inch by one inch by one centimeter position where the pain would stop for just a second. No such luck. A boiling hot water bottle, an ice pack, tylenol, a muscle relaxer and my pain med later.. and I can at least sit up mostly straight. Posture, the youtube video said, is incredibly important when your back/hip/legs lock up like this. They weren’t kidding.

Here’s the funny part. After all of this, knowing how it feels, being able to describe it in depth, living like this 24 hours a day for the past four days straight, I had sent a letter to my CNP informing him that I might end up going in due to the pain and my inability to walk further than my bathroom. The response (I kid you not) that I got back: Let me know if you go in. I want you to start working out in a pool to strengthen your muscles.

Are you fucking serious?! Who remembers the scene in Dude, Where’s My Car? where the boys are in the shop and reading each others’ tattoos? In my head, this is how this went:

Me: What does mine say?
CNP: Muscles. What does mine say?
Me: Tendons. What does mine say?
CNP: MUSCLES. WHAT DOES MINE SAY?
Me: TENDONS. WHAT DOES MINE SAY?
CNP: MUSCLLLLLLES!!!
Me: TENDONNNNNNS!!!

Am I surprised? A little. I was still expecting him to do what I told him I needed him to do on our first visit: fucking LISTEN. I know my body. I know it well. I flat out told him I needed him to listen. I told him I was difficult to treat. His exact words were: Okay. As long as you’re not a jerk about it.

Well, dude, I’m not being a jerk about it and you’re still not listening. Maybe I should be a jerk about it? I’ve left you notes, been extremely detailed so you don’t have any misconceptions, sent you resources explaining that I literally just need you to help me maintain myself because, as THE ENTIRE MEDICAL COMMUNITY KNOWS, there is no fucking cure for Ehlers-Danlos Syndrome. None. Nada. I’ve played by your fucking rules. I’ve picked up your prescriptions when you could have called them in (yeah, I checked, there’s no law against electronic prescribing of my meds in this state). I didn’t report your ass while you flat out admitted you were using one of my fellow Zebras as your fucking guinea pig. I listened to your green-shaded idea about testosterone somehow being a miracle cure for all EDS patients (even though most of us cannot use testosterone or even get cortico-steroid injections like myself). I’ve waited days to hear back from you on something that would have taken two minutes.

I did it your way. And yeah, I know, I had a monster cold/flu thing that put me down for 2 1/2 weeks recently (that was fun) and I haven’t been able to go to any referral appointments because of it (and now this on top of it).. but, my dude.. rule one of treating patients: Listen. If you don’t listen, you can’t learn. If you don’t learn what the symptoms are, you can’t have a chance of diagnosing it. My husband thinks that it’s partly because I’m a woman. I keep hoping he’s wrong and that you aren’t being a neglectful chauvinist and contributing to the numbers of undertreated women who have chauvinistic, prideful, fragile-ego providers who don’t listen to their female patients. Unfortunately, because of all of this shit and this being the umteenth time that I’ve told you something and you’ve legit refused to even acknowledge what I’ve said to the tune of replacing it with what you want me to have said.. I’m beginning to believe that he’s right.

I want you to prove me wrong. I want you to listen. I want you to respond within three days tops because I know it doesn’t take that long to respond to a patient question. I want you to be the provider I need. You don’t know.. and I doubt you ever will.. what it takes and what we have to go through to find a new provider. To you, it’s pretty cut and dry. To us.. it’s a fucking process. It’s stressful. It, every time, calls into question our self-esteem, our toughness and ability to cope, makes us wonder why we bother at all. I want to not have to go through that twice in a year. I want to just.. be fortunate and have my new CNP stop all of this nonsense and listen. I’m not here, spending money on our visits, taking medications, using mobility aides, using more topicals than I can count, losing sleep and life quality due to the pain for fun. I’m here because I need help. I’m sick. It’s life-long. It’s not going anywhere and I need you to help me stave it off. Stop trying to cure me. Stop talking about my weight because EDS doesn’t care about weight. Skinny or fat, it destroys lives. Stop talking about hormones. Stop talking about your “miracle cures”. STOP using us as guinea pigs. Stop. Listen. Hear us. Work with us. We need help and there isn’t a lot out here for us. We’re desperate.. and there are too many of us whose desperation is getting the best of them.

Fact: Every chronic pain patient I know (that’s a large number of people) has developed an “exit strategy” in the event that their providers no longer prescribe their medications because the pain is that bad. It is life-ending. Every. Single. One.

Think about that.

Generalizing Chronic Pain By Someone In Chronic Pain

Clarity and confession time!

I wanted to tell you all this. I’ve had someone today tell me that I’m in a niche market. She said this because I told her the simple truth that it is a common misconception to think that most people go through withdrawals from their medications. I told her that it was dangerous to generalize people because of her own experience.

She decided to stick her head in the sand on the issue and become immediately defensive towards me, throwing “shade”, etc.

Let me confess this to you all. When my mother was alive, taking three very strong opiate medications that barely touched her pain, I in my infinite stupidity told her that I would not ever be okay with her smoking medical cannabis (or otherwise ingesting it), nor would I be okay with her taking synthetic THC, even if they helped her pain. I had no clue what the hell I was saying.

Being on this side of the pain control debate.. you know, the side wherein I have severe intractable pain that needs pain medication to help control it.. I can honestly say that I was a complete idiot. The way she suffered was indescribable. Her blood pressure was constantly through the roof and it ended up killing her. Her muscles, according to the local medical investigator’s office, were shredded from the same pain. They said it. Flat out. Her connective tissues throughout her entire body were destroyed. EDS. Ehlers-Danlos. We didn’t know it then, but we do now.

When I hear people generalize others due to their own experience, I get extremely angry. You know the types: “Well, I ___________, so you ought to be able to ____________ also” or “Well, this happened to me like this, so it’s going to happen to you just the same.”

It’s an ignorant standpoint. Human beings are so vastly different in our construction, in our chemicals, in our DNA and our base cellular composition. How anyone can generalize one of us with another or anyone else is beyond me. That kind of ignorance is damaging. It’s the same ignorance that prompted a nurse (yes, an ER nurse) to tell me that turmeric-curcumin was going to cure my incurable, untreatable genetic Ehlers-Danlos Syndrome because her cousin’s sister’s boyfriend’s childhood-best-friend’s former roommate tried it and it helped her somehow. Yeah, I’m serious.

The woman this morning refused to listen to me. She refused to acknowledge a doctor. Then she refused to acknowledge the 30+ pages of doctors who are all saying the same thing (see: Doctors implore CDC to stop punishing pain patients on opiate pain medications). That, somehow, ended up with me in a “niche market”. Her bad experience with her medication was all that she needed to somehow know that all almost 7 billion of us experience pain medication the same: addiction, withdrawal and God knows what else.

It was ignorance at its finest. Having been on that side of it, the ignorant side, I am attesting to this. I wish, more than anything, that I could tell my mother how sorry I am for putting her in that stupid box with everyone else I thought was just a junkie. I wish I could hold her and tell her, “Momma, whatever takes your pain away is fine by me. I support you.” I would kill to give her another shot at this and living a pain-free life. No one should suffer the way she did. The only positive about her death is that her suffering ended. Shame on anyone who continues generalizing chronic pain patients like that, especially fellow chronic pain patients. Shame on you.

Don’t be ignorant. Get your heads out of the sand and listen. Look around. Read. Research. Be educated.

Love to you all.

About yesterday and my meds..

I just finished writing up an article on Medium in which I document what happened to me yesterday. I ran out of my pain medication. While that doesn’t normally happen, it was made so much worse by the fact that my new provider failed to mention that he will not electronically prescribe. It’s not that he can’t. He won’t. I don’t know if this applies to all of my medications or just my pain medications. I found it out the hard way, though.

Today, it’s been several days since my Friday appointment with him. He insisted on increasing an allergy medication of mine and putting me on antibiotics for my latest sinus infection. Neither of those medications have been called in to my pharmacy. My infection is getting worse. I’m running low-grade fevers now and the fatigue from it is getting much more noticeable.

I’ve left him almost six messages at this point (between my husband and myself) and heard nothing back. My question to him is this: If you are going to treat Ehlers-Danlos patients, are you comfortable knowing that your preventative care for us is not preventing anything, but making things worse? We are complex and we need a bit more of a fast turnaround than you’re offering. Are you going to step it up or are we going to need to find someone who can take the time and treat us like we need to be treated?

Here is my article on Medium about yesterday. Anyone who has had this happen to them, please know that my heart is with you. You are not alone.

https://medium.com/@wyredalice/running-out-of-my-pain-medication-bc4bd623de6a

Losing My.. Provider

I finally got word today from my Mighty Editor, Paige Wyant, that my newest article, Losing a Health Care Provider as Someone With Ehlers-Danlos Syndrome, was finally published today! It may not seem like a big deal because, let’s face it, I’m a volunteer contributor (see: unpaid), but it’s a very big deal. The Mighty is one of the best platforms for us to reach out to fellow chronic illness and chronic pain community members and spoonies. They have reach that few online companies have. It’s good to utilize it when possible.

The problem I’ve been having lately has been turnaround time. Usually, writing an article or research piece has a very short publishing turnaround. This time, though, it was about two months long. Since then, I’ve managed to get a new provider and have started work on looking at some comorbidities we think I might have (see: MCAS, POTS). My new CNP also mentioned wanting to try me on testosterone to help build muscles around my joints. Of course, after researching it thoroughly and speaking to other fellow Zebras, I decided against it and will be informing him of that this Friday.

Moving along, the other thing that I’ve noticed is that, unless something changes, this article isn’t going to be featured anytime soon. This is a problem. I haven’t seen many (or any, for that matter) articles wherein it is discussed what a patient goes through when they lose a provider. There’s an entire ordeal when it happens and that’s just with regular patients. When it’s a chronic or rare condition patient, the stakes are much higher. We’re being threatened with loss of care and the outcomes can be much worse.

When you are an Ehlers-Danlos patient, there’s an added factor: Perceived threat. When an EDS patient sustains a perceived threat (whether they consciously feel threatened or not), their body goes into a sort of mini flare that’s brought on by an increase in adrenaline and the fight-or-flight mentality. We panic and our body begins to react by producing more tension and, due to tension ripping our connective tissues apart, we produce more pain as a result. Stress and panic are two major factors in reducing our daily pain levels. When we’re panicked and stressed, our possibility for injury goes up. This is universal among Ehlers-Danlos Syndrome patients.

So, thinking about this externally and objectively, if I were an EDS patient on the outside, I’d want to see an article about losing a provider and I’d want to see what the person going through it felt like. There’s a comradery there and knowing that someone else is going through it lets me know that I’m not as alone as I often feel. That was a large part of why I wrote that article. Speaking from the point of view of someone whose state has less than 200 people who suffer from EDS, I know what it’s like to feel alone in my illness.

Anywho, I hope that some of you reading this will take time and ask yourselves that question and, if you feel so inclined, get back to me. Ask yourself what you’d like to see if you’re a reader, a Zebra, a spoonie or someone who has a family member who is. What thing that never gets talked about would you like to see brought to light? Let me know and I’ll see what I can bring to the table.

Generalizing and Too Long Between Posts!

I feel like Fin Raziel from Willow: “Has it been so long?”

Yeah, it’s been almost 20 days since I wrote anything here. That’s the beauty of being in a flare. This flare has been different, though. I don’t get these very often, but they involve my tendons. It’s not my joints alone. No, no, no. Let’s throw in that deep, aching pain in my tendons. Let’s throw in the feeling that my Achilles tendons are going to snap, that the tendons running throughout my legs are just going to shred themselves.

Anywho, I digress. I’m sure that so many of you with Ehlers-Danlos and lupus understand what I’m talking about here. Speaking of lupus, I’m in talks with my new CNP to try to get me tested again. I was recently informed that the best way to detect lupus is during a flare. Here’s hoping we can get on that testing sooner rather than later.

While I’ve been down, though, I picked up on a project that I had been working on for 10 months. I had put out a call on the Chronic Illness reddit for stories from people who had been generalized and I got several responses. Yesterday was a great hand day for me (yes, that means that my hands were working with less pain than normal) and I decided to go ahead and finish that project. The resulting article was published on Medium.

It is called Generalizing Chronic Illness and Ehlers-Danlos Syndrome. It’s my very first article on Medium and I made sure to have my profile page set up so that you guys can access my other major social media account on Twitter.

Here’s my Medium profile for now. I’m going to keep learning the ropes of blogging and I’ll see about getting that profile its own tab here (yes, I know, fancy schmancy).

I hope this article helps someone who needs it. I hope that it helps people in the Ehlers-Danlos and Chronic Illness communities (not just on Reddit) to know that you’re not alone, to know that we’re more than willing to yell when there’s something like this going on and to know that we are going to yell together, for ourselves and for each other. We have one anothers’ backs and here’s hoping that we keep getting stronger and louder.

Trial and Error: Learning What Does What

No one tells you, when you’re going through the beginning years of knowing what your actual diagnosis is, that you’re going to have to learn what happens when you do (insert thing here) or when you take (insert medicine here) or when you eat (insert food here). You have to figure things out yourself and often the hard way.

This weekend has been no different for me. I’m allergic to a remarkable amount of medications, specifically antibiotics. I’ve never known why, but that is pretty irrelevant at this point. This past week, I went in and was getting checked for yet another sinus infection. I get about 5 a year on average. This year, though, I’ve had about 8 or so (I think; I’m losing track). They’re very common in people with hypermobile EDS (Ehlers-Danlos Syndrome). Usually it’s because of a deviated septum or something horrific like that. I don’t think I’m any exception.

What is amazing is how frequently I find out that I can’t take or handle a medication. See, a couple of years ago, I had been diagnosed with the deviated septum. It was determined that that deviation was the cause of my frequent sinus infections. If you’ve never had one, I suggest avoiding them at all costs. They suck. Do not recommend.

That doctor, bless his heart, prescribed me a medication that is known to cause problems in hEDS patients. Granted, we didn’t know that I had hEDS at the time. At this point, though, we know and, unfortunately, I’ve taken both medications in that category. Yes, both medications. Those medications cause massive problems with tendons in hEDS patients. I found that out the hard way.

Yes, the hard way. To me, “the hard way” means trial and error. It means finding things out after the fact. Why? Well, because there isn’t that much literature on what we should and shouldn’t avoid altogether. Another why! Well, because we (magic words here) all present differently.

No two of us present alike. I wish I was kidding. But, there it is. Because of that one major discrepancy in our treatment, it is almost impossible to know who will be affected by what. Some people won’t be injured by certain meds. Others, like myself, will be and it can last years. My achilles tendon has only recently stopped feeling like it’s going to snap on a regular basis. Now it only feels that way about twice every six months.

So, imagine my joy when I took another medication this weekend and became violently ill! I couldn’t understand it at the time. The medication wasn’t something new.. was it?

Turns out, the carrier salt in the medication was different in its solubility and my stomach did not like it. I couldn’t initially understand why I’d been given that one.. especially when I found out that the medication I’d been prescribed had a heads up about side effects in people with digestive issues. Oh, yes. That’s another fun slew of comorbidities people with hEDS often have: major digestive issues. I’m no exception.

Why did I get this one, then, when I’d been given the slightly different medication instead? Well, why wouldn’t I be prescribed this? I’m still getting the same medication and I’ve shown no allergy or sensitivity to it to date. Gotta stick with what works, right? Right. But, this one didn’t work. This one made it hard to maintain that medication in my system.

So, the lesson I’ve learned (again) this weekend is to really be very vigilant with what differences I see in my medications. Different manufacturers make different medication carriers and different carriers can have massively different effects. Yeah, it’s a pain to have to put this much care and attention into what I’m taking. It’s a pain that I can’t just take my meds and be done with. But, it’s my life. I can’t judge my body’s tolerance on the tolerance of others because.. well, there aren’t any others just like me. We’re all different.

It makes treating hEDS so much more difficult for the doctors, but also for us, the zebras. It’s exhausting because, as I’ve said a few times here, we have to learn by trial and error.. a lot. A lot a lot. So, if you’re going through this, please know you’re not alone. I do think, though, we need to be talking about this phenomenon within the zebra community a lot more than we do. We need to be sharing our experiences. I shared my experience this weekend with my local state EDS group and, y’know, I was grateful that at least one person got some help from it. Now they know and maybe they’ll be able to prevent this mess in their own day-to-day.

Love and light, dears. Keep checking out your stripes, keep seeing the differences, and make sure you speak up.