So Much Misdiagnosis

When it pertains to your health, you are bound to be misdiagnosed multiple times over the duration of your life. According to books with hard statistics, women are far more likely to receive a misdiagnosis than our male counterparts. It makes me question the medical field on a whole, and Lord knows I’ve been doing that for quite some time already. I am not offering up trust at the moment. I have exactly two doctors I trust to care for me properly, and no one should have such low numbers when they need help.

When I was diagnosed roughly fifteen years ago with “inoperable spinal damage between C-3 and C-7” (that’s five disks in total) in my neck that was “pressing on the nerves going in and out of my spine”, thus causing the excruciating pain I am still in, I was stunned. At the time, I didn’t know much about the internal aspects of the spine. Obviously I was well aware one could injure themselves and that you could become permanently paralyzed through no fault of your own, but I wasn’t up on the medical lingo. Until that day, my back and neck were simply an every day part of my body, albeit parts that hurt like hell. Now, all these years later, I am far more educated on the ins and outs. So when I met my current spine specialist in January, I had to report the information I had previously been given. Instead of requesting those records, he ordered an MRI. We both had to put up a fight to get it approved, and once it was, I was thrown into the difficult position of completely changing my insurance just days before a doctor’s appointment. That meant getting the MRI approved through the new insurance company, and I was prepared for yet another battle. However, they approved it immediately. Unfortunately, I did not receive a letter regarding the approval until about six or seven weeks later. There was no way in hell I was getting into an MRI machine when I didn’t have the approval in hand. Call me crazy, but I didn’t want to see an enormous bill for this MRI over a missing document with the approval on it. I’ve seen this happen to people, and I can’t afford to be stupid.

I had the MRI done on June 13th. It was quick, painless, and frankly, not worth the months of built-up anxiety for twenty minutes of my life. When I saw my doctor to go over the results, I was shocked silent to hear that my neck “looks great”. I said “Excuse me?” and he replied by saying that the damage I previously had “probably healed over time”. I stared at him and said “Why didn’t anyone ever tell me that could happen? And why am I still in so much damn pain?” He shrugged and then pulled up the images to show me how perfectly straight my spine is (Thank you for all your lectures about perfect posture, Grandma. I can still hear your voice whenever I don’t sit up straight.). However, this “perfectly straight spine” isn’t normal. Most people have a curve to their spine. So while I have the curve aesthetically, if you’re looking at the back of my neck, internally, it is straight. My diagnosis? Arthritis. It was a genuine “What the fuck?” moment from beginning to end. I’m in excruciating pain and he’s sitting across from me telling me that my disks are perfect and well hydrated, and even said “You have the spine of a thirty year old.”  I have anti-aging bones to match the genetic fact that I also look far younger than I am. Awesome! <I’m rolling my eyes, and being slightly sarcastic.> He noticed that there’s a lot of tension in my upper back/neck area, which he says is where most people store tension. I know my back and neck bear the brunt of a lot of my stress. He looked at my medication history and suggested Trigger Point Injections and referred me to a colleague for Biofeedback. When he discussed meditation and “lowering my stress levels” I said “Hello, have we met?!”, which was apparently confusing for him, so I had to explain my stance on things that haven’t worked for me in the past. I was given an appointment for the TPIs, and left his office feeling dejected beyond words.

I then went downstairs to the lab and submitted to a random drug test for medication I’ve never abused in my life. Let’s be frank when I say I have never abused ANY prescription drug. In fact, I am the last person anyone would ever accuse of having a substance abuse problem, but I did it to reassure my doctor that nothing has changed, just in case her records are audited. With the serious decline I have received in treatment these last few months, that could be sooner rather than later.

My doctor has systematically, over the course of two months, cut my medication down by roughly 80%. It is not for pain, it is not something I can “get high” on, and again, I’m not abusing it. Once my test came back, she wrote me a prescription for 33 pills. My normal monthly dose is 180 pills, and I only ever take them as needed. She has a doctor who oversees the controlled substances in her office. I was supposed to meet with this psycho (You’ll have to trust my assessment here. There’s nothing sane or normal about this woman.) for the second time, but she chose to cancel on me without giving me twenty-four hours notice. Her secretary had the audacity to inform me that I may receive a bull for HER cancelling on ME. If I receive an $80 bill from her office, she had better HIDE off the fucking grid because hunting her down like a rodent will become my new mission in life, right after I report her for fraudulent billing practices. She has her secretary call me to cancel and actually says “Tell her she can stop by Wednesday or Thursday.” Like I have nothing else going on in my life? I wanted to say “Please tell her to go fuck herself.”, but instead I said “I am booked for the next two weeks. I can see her July 3rd.” I intentionally chose this date because I am a bit of an evil genius who, now that I know who I am dealing with, has decided to be as challenging as possible. Her secretary gives me an appointment, after saying she has several other patients before me on the same day and then adds, “I don’t know if she’ll be in, it’s a holiday week.” July 4th is on Wednesday, if she’s planning on not being in the office, then I’d better not receive six confirmation e-mails like I did for the cancelled appointment. I intentionally ignore these e-mails and any text messages asking me to confirm so that they have no paper trail of confirmations or cancellations from me. I will be calling on Friday to confirm because I want to record the confirmation call. If she cancels again, my doctor is going to hear about it because I’m the one being punished by having my medication reduced each time it is renewed, and if I get the call on Monday, she had better be prepared to write a new prescription on Tuesday when she’s in the office, or have a colleague do it. If this was going to be an issue, she should have said something to me directly when she saw me at the end of March. Instead, she chose to say other things and there was no discussion regarding this topic.

The drug in question is a well known anti-anxiety medication (It’s not Xanax.). There are major health risks involved if I am not slowly weaned off of it over a two to three year period. If I should have a seizure, heart attack, or stroke due to this rapid reduction in medication, this particular doctor is the first person I am authorizing my family to sue the living crap out of (I’ve already told two family members about the situation, just in case.). I have even had my insurance company call them and warn them that this is both negligence and medical malpractice. They have been advocating for me due to communication issues where my calls don’t get returned for 5-7 weeks at a time, as opposed to the same day. I am trying so hard to focus on my health and get everything straightened out, and this office is constantly doing something to piss me off. Even the insurance company has said “I’m playing phone tag with the nurse who works for your doctor. I understand your frustration in being ignored because I call several times a week, too.” They want to get paid by my insurance company, but they can’t return a phone call in a timely fashion? Frustration is not the word I would use at this stage. Especially knowing that they just billed nearly $2000 for a drug test, my third this year. I expect my insurance to cut them off from further testing at some point, especially since they fork over $1800 each time. There are companies who wouldn’t pay $300 for this constant bullshit, but obviously they have an agreement regarding this. It’s absolutely ludicrous. There is no fool-proof way for my tests to be accurate. The first one was positive for the medication I take. The second was negative, but my sample was also disposed of after it reached the four hour mark, so I don’t know why it was reported at all if they disposed of it. The third was positive. It doesn’t get sent out to a special lab for analysis, it’s merely someone dipping a stick into the sample and then submitting a report back to the doctor. There’s nothing precise about it since the tests declare that they can be inaccurate since they are not set up for this type of medication. It actually lists about ten medications and says it cannot guarantee accuracy for them.

Being medically strung along does not make me feel comfortable or safe. It does not foster trust. It took my regular doctor seven weeks to change a medication for a serious health issue, and have someone call me in regard to it. Seven fucking weeks! I am now forced with calling back and saying “The new medication made me deathly ill. Please change it.” How long will it take her to change it at this stage is anyone’s guess.

So, as I navigate all of this, I’m also struck by the annoyance that the medication in the Trigger Point Injections wasn’t even explained to me. I spoke with someone and did a little research, only to find out it’s basically steroids, anesthesia, and a muscle relaxer. He did say that if it worked at all, it would last about two weeks. Due to a new-to-me medication I am getting from my neurologist (I will probably talk about this next year. I am, intentionally, being tight-lipped about it because I want to see if it’s going to work or not.), I had to ask her if it’s safe to have the injections. She gave the green-light, but I still don’t feel comfortable jumping into it. He never addressed the issues with my lower back, and during the physical exam, when he pressed on my spine, I nearly flew across the room when he hit my lower lumbar area, yet he did not order tests or answer my questions about it regarding pain. That’s going to bug me, and as a result, I have decided to get a second opinion. I do have an appointment for the injections at the end of July, but this is still MY health, MY body, and if I don’t feel 100% comfortable, then it’s okay to admit it and it’s okay to have someone else take a look. I have my x-ray report, I have the MRI images on CD, so asking for a referral to another spine specialist  is being fair to myself. I like this doctor, but that doesn’t mean a whole lot since we went from “I can prescribe something.” to “Let’s start injections ASAP.” Overall, he IS an anesthesiolgist and what do they do in pain clinics? They perform injections all day long. I’ve never been under any form of anesthesia in my life, and if I can avoid that going into my body, I will. Obviously, if the other doctor is on the same page, maybe he or she will better explain their perspective, but that doesn’t mean I have to agree to their methods. This doctor and his needles will still be available to me, if I choose that route, but for now, I would like to see what alternatives are out there. Pain management shouldn’t immediately fall under “anesthesia” and needles. At least not from where I am sitting, as the one in pain.

I am hoping and praying I get real answers soon. For now, I’m going to listen to my intuition and get a second opinion. Possibly even a third, if necessary. There’s something telling me that I need to dig deeper, and I can’t ignore that voice.

I’ll be back soon. Make sure you have fun without me. 😉

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

 

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Dazed, Confused, and Out Of Sorts

I’m running out of ways to describe my current state of mind. Earlier this week I had a different sense of self, and then I came home to discover I had lost my house key and the remote for the alarm. Thankfully, they were found and brought to “Lost & Found”. I received a return call the following morning letting me know they were safe and sound, and that I could come and get them, which I did on Thursday. You cannot imagine how stupid I felt in the moment, especially considering my history. I have had a set of house keys since I was eleven years old. I still have keys for every place I’ve ever lived, except my last place of residence where I tossed the keys onto the front lawn on the final day of moving. That was my way of shedding myself of the negativity of a horrible experience that is still haunting and affecting me on a daily basis. It wasn’t an exact science, but in the moment, I didn’t want to physically be carrying around a physical memory filled with pain.

I don’t normally lose something I tend to keep my eye on. That error made me so upset, and it made me question myself for days. It was an enormous “What the fuck is wrong with you?” moment, at least for me. I know many people will say I am human, no one is perfect, and/or shit happens, etc., but I take my responsibilities seriously. Anyone who thinks otherwise doesn’t know me at all.

Despite that incident, I had an extremely productive neurology consult with a new doctor. I waited nearly six months to see her, and I was definitely feeling iffy walking into the situation. After going through all of the standard questions, a quick baseline test, and doing a neuro history to rule out what I have and haven’t tried, she immediately discussed the treatment method with me that she feels I am the best candidate for. I was relieved to hear someone cut through all the bullshit and go straight to precisely what I have wanted to do migraine-wise for the past six years. I have a three to six month wait, but she feels it will be worth it, and I am hopeful. It’s by no means a cure; I will still get migraines, but after my first year of treatment, I shouldn’t be getting daily migraines any more, or migraines that last for weeks at a time. In less than three years, I have had eighty migraine-free days. That isn’t even two straight months without searing pain. To be taken seriously right out of the gate and have someone treat me with such respect was truly a bit of a shock. As I’ve likely said before, my faith and trust in the medical community is basically nonexistent. In the past year, I have met three good doctors and maybe one or two decent medical professionals, but everyone else has been a medical failure, and for me, even one medical failure is one too many.

When I explained the appointment to my brother and told him how it went, he asked me what I am supposed to do for my migraines for the next three to six months. His exact words were “What are you supposed to do in the meantime? Chew Excedrin?” It was a valid question, and it reminded me that I had not asked for an abortive, so I will call ASAP and see if my doctor is willing to get Relpax approved until the new treatment begins. Thus far, my insurance company has been very on the ball with nearly all of the things I’ve needed, so I hope this won’t become a battle. I honestly can’t handle another moment where I have to battle anyone or anything. I am mostly a basket case (which is truly nothing to joke about) on Promethazine. As it turns out, stress really DOES affect us far more than we realize.

I have seen myself decline in a dramatic way over the past year. I have never felt more “off” or out of touch with myself than I am now. Being chronically ill isn’t fun, nor is it glamorous. It is a daily battle just to get out of bed. This is something people don’t seem to realize, unless it’s happening to them.

I am having a difficult time wrapping my mind around the fact that it is June. I rarely say “I want to go back to this month and start over.”, but I have definitely been feeling like this quite a bit lately. The heat waves and then 30-40 degree drops in temperature have taken their toll on me. But from here on out, I expect this to be a disturbingly hot summer and I am stressed with the thought of trying to navigate through it. I don’t want to deal with being sick, dehydrated, and isolated. There’s not much I can really do about any of these things, but the knowledge that it’s all headed my way is genuinely too much for me.

I am trying to keep up with everything here and still live my daily life. The truth is, my daily life is exceedingly dull and unhappy. I lack the ability to be fake and pretend it’s something it isn’t. So while I am clearly not writing as much as I would like, I am still doing the best I can. I thank everyone who has stuck with me all these years, for better or worse. Having an outlet for my thoughts is important to me.

Hopefully I will be able to write more this summer. I can’t make any promises, but I can try my best.  Here’s hoping I achieve more than heatstroke over the next few months.

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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The Well-Placed Word

dowhatyoufeel

Not that long ago, what I can only presume is an “older gentleman”, and by “older”, I mean over fifty, but probably closer to seventy, sent me a private message on Facebook to complain about my use of a word. I remember reading the message and thinking “Are you for real?” Initially I ignored it, until I decided to reply and set him straight.

As a writer, and especially with something like this platform, I don’t feel I have to edit myself or dumb myself down. In fact, I transitioned to this platform from another one that is still “active”, because I felt like I was neutering myself there and wasn’t fully being the outspoken person I always am. I needed to remind myself how I started out and how I have grown, but not changed my voice and how I use it.

I have come to resent myself whenever I am not 100% me, especially when someone turns to me and gives me any type of “warning” about how vocal I am or how they would like for me to “behave”. I’m not a child or a trained dog, so that kind of behavior, when directed at me, is a quick way to get yourself on my shit list. I revel in authenticity. You cannot ask me to me something I’m not; because the results will be negative.

The word this man took such issue with is one I did edit, slightly. Instead of using the word I wanted to use, I said “effing”. If that offends someone, that is a sad state of affairs to me because that’s pretty clean in my eyes. I couldn’t get more “clean” with that specific word, either. Perhaps I should have used symbols, instead? I know lots of us use this word in our daily lives because no one is perfect and it’s probably an overused word in many instances. I’ve never counted, but I’m sure I use it daily.

I remember consciously making the decision to use it in that “edited” way so as not to offend anyone. And yet, I get someone who is offended by it. Big surprise. He somehow felt the need to inform me that I shouldn’t use it in connection with God on a public forum. I love it when people think they’re lecturing me. <rolls eyes>

“I don’t mean to come off judgmental…” Really? How did you expect to come off? When surfing Facebook or the Internet at large, I am certain we probably all come across things we don’t like, or things that affect us in a negative way. You have the right to engage or scroll on. Hell, you can walk away from your phone, computer, tablet, etc., and disengage entirely.  I will usually scroll on if something isn’t worth my effort because unless I know someone, what’s the point of engaging? Would I engage with a stranger on the street who said something stupid? It depends on the situation, obviously, but for the most part the answer is “No, I would not.” I’m not that nice, or approachable.

As a result of this person’s comment, I ended it with respectful wishes for the upcoming holiday (Passover) and left it there. I’ll probably have to block him if this comes up again, lest I offend his delicate sensibilities with my honesty and directness regarding Israel, Judaism, or perhaps the placement of the sun in the sky.

When something is titled “Poison In Lethal Doses”, you can come to expect certain things from me, since I’m the one producing the written content. Anyone who has read my bio can probably figure out that I’m a “take no prisoners” kind of chick. From day one, the way I have conducted myself as a writer is the reason I have received respect, not to mention a widespread audience. There are Harvard educated doctors who read my work (Yeah, it shocks me, too.). If they’re not offended by the occasional use of profanity to make a point, I’m good with that. This is definitely not the place for anyone who is sheltered or buttoned-up so tightly that an edited word bothers them.

Believe it or not, this is the first time I’ve ever had someone approach me in ANY way during the course of my career and tell me that one word I used bothered them. I think I’ve maybe offended one other person with my “brazen authenticity”, but for the most part, people either like me or they don’t. I can’t control how I affect others. I’ve mellowed over the years (sort of-ish) and curse a lot less than I once did, so I found myself staring at this message for a while, pondering how to handle it. Under normal circumstances, I wouldn’t have replied in such a polite fashion, but I was incredibly polite. I let him know, in no uncertain terms, that HE contacted ME, and that if someone takes issue with a word I use, the issue lies with them, not with me. I’m not so sheltered that people have to curb their words with me. I’d be more concerned with the tone of voice you use, because that’s something I am more inclined to get in someone’s face about.

On the Internet, unless you’re on YouTube, you can’t really pick up on tone from people you don’t know. I have relatives who I communicate with who I am positive do not pick up on my tones when we speak. If they did, they’d stop talking. I have several tones that are “warning tones”. My voice drops several octaves and my responses become icy, or short. A lot of my text messages are “warning tones” because I’m probably pissed off at the other person for being nosy, presumptive, rude, disrespectful, hurtful, etc. I don’t always pursue my anger towards someone if I know how it will be received. It’s not an easy choice to make, but it’s knowing who and what to argue about. If someone keeps talking or texting through the “warning tone”, I do not feel sorry for them when they inevitably incur my wrath.

I have many different tones to how I speak and express myself. There’s my “dry tone”, which is all about timing. In my family, we refer to it as my “dry, British humor”. It’s my Judi Dench tone, along with the accompanying expression, and sometimes I throw in the accent for good measure. It can be delivered in a myriad of ways. There’s my “funny tone”, my “sarcastic tone” which are also, all about timing and delivery. What I find interesting is how people who know me well are never entirely sure which tone is which. Whereas my brother KNOWS if I’m being a smart ass or just being me. He knows my “warning tones” because he will often remind me, when I use them, that stabbing someone with a fork is illegal. He can even pick up on it in a text message. He gets me, even though he often pretends not to.

Nine times out of ten, I get accused of being sarcastic when I’m simply stating the obvious. That’s when you know, for sure, that a person is making an assumption. Don’t make assumptions via text message, because you’re probably wrong. I simply don’t have time in my day-to-day life to use a “tone” via text. Unless you’re an absolute moron, I’m probably just stating facts. No one said I’m not rolling my eyes while swiping my reply. I might be, but the other person can’t see me and that’s probably a good thing, though I wouldn’t shy away from rolling my eyes at them if they were in front of me. I’m not two-faced.

My daily vernacular is a combination of varying expressions, both in English and other languages, along with wit and measures of sarcasm and honesty. In certain situations, I dial myself down approximately five to ten percent, because I have to filter myself with the other person. I don’t like being unable to fully be myself, but sometimes it’s a necessary evil.

A family member pushed my buttons last winter. After giving them ample time to “get over themselves” and apologize, they continued to treat me like shit and be rude and dismissive. Publicly, they behaved like nothing had occurred. Because this person married into my family, I have to shield my actual blood relative from the incident, and my subsequent feelings. But first, I wanted to verify if the behavior was normal, so I asked this person’s sibling, with whom I am equally close to, if this was normal. They told me “That hasn’t been my experience.” and proceeded to ask if I had said something offensive or hurtful, leading the person to respond negatively to me. I had done no such thing, and I found the question borderline absurd. They quickly dismissed the subject after I replied that I’d done nothing but be nice and kind, and went back to talking about themselves (Yeah, that’s my family. I wonder if group rates are offered in family therapy…). I have now spent over a year shielding this family member from my true feelings. Someone I respect said “Well, you’re keeping the peace because you don’t want to lose another friend.” I stared at him blankly, because he clearly forgot who he was talking to when he said that. “Keeping the peace” isn’t how I do things. That’s “people pleasing” behavior, and I REFUSE to do it.

Since the initial incident, I have tried my best to be polite to this person, but I’m sure I’m failing miserably. My concerted effort has clearly not been well-received because even after sending this person a birthday card, something I did NOT have to do, I’ve continued to be treated as a threat. However, I have to be honest with myself about how I feel. I cannot be fake.

Fast-forward to last week, when I received a text message inviting me for Passover. Normally I am invited at the last-minute each year to most holiday occasions, and while I consider the invitation supremely kind and genuine, it’s the last thing in the world I want to reply to. I’m not known for my diplomacy. I know I can’t say what I truly want to say in response, so naturally, that upsets me.

On pretty much any given day, the last thing I want to do is sit in a room with a group of people I don’t know and pretend to be interested in forced, polite chit-chat. It’s not who I am. Food is of zero interest to me, and people I’ve never met before rank up the list, too. I appreciate the invitation, but there’s no polite way to say “I’d rather remove my eyes with a melon baller.” On top of my very real feelings, there is always my health to consider. I try to be around as few people as possible with uncontrollable chronic migraines and all the other health issues I am currently trying to navigate. I just took my last round of antibiotics this morning, and I don’t even know if they helped, which is worrisome.

Chronic illness makes me unreliable for many events, especially anything short notice. I can’t tell you how many times I’ve had to heavily caffeinate in order to go to a doctor’s appointment or something else I committed to in advance. Inside, I feel like the biggest mess on the planet, but on the outside I don’t think people ever notice that something isn’t right. After all, the majority of people are only looking for visual clues. They’re not going deeper.

I ended up sending a very polite text reply to the invite last night. I was downright polite and borderline diplomatic (for me), but I didn’t get into any detail as to why I could not attend. If I’d been asked, that would have been a problem, but I wasn’t. Instead, I was told I am welcome anytime. I know it was genuine, so I was genuine in turn. I’m good with large crowds of strangers when I’m speaking in public or have a commitment, but there are still times when I will say no to such things.

This year, I need to spend the holiday focusing on my health, and giving myself a short break from all the craziness because I’m really suffering in terms of quality sleep. My body needs rest in the worst way. 😦 I won’t make any appointments those first few days (March 31st might have been a good day to get my MRI out of the way, but I’d feel bad doing it on a holiday.), but I do have things that I will need to get squared away during the following week.

Words are important in society. It’s how we communicate, because not everyone responds to non-verbal cues. I find that the well-placed word is crucial. It can be the difference between “keeping the peace”, should you enjoy the route, or starting a fight, but it can also be the difference between complimenting someone and making their day or going through life as an extremely unpleasant person. Each day, we make choices with our words.

No matter how you choose, I’ll be over here, maintaining my authenticity as a “Speaker Of Powerful Words”. 🙂

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.