Tuesday Thoughts

Hello one and all. I hope you’re having a great start to the week.

My procedure yesterday afternoon went okay. I think I’ve just gotten used to it, though my anxiety was still pretty awful. Usually there’s an epic migraine and so much physical pain after this treatment that I come back, feed my cats, and drag myself straight to bed. Surprisingly, I didn’t feel as horrible as I normally do. Completely different side effects this time around. I wasn’t quite prepared to be slammed with nausea late last night into the early morning hours, but that’s what Promethazine is for. It helped quite a bit, and I did sleep, but today, I feel physically, mentally, and emotionally numb and exhausted as hell. I’m supposed to rest, not push myself too hard physically, etc. I felt overwhelmingly exhausted by 1:00 PM, and spiked a fever around two. 😔 Hopefully it’ll be gone soon, otherwise I’ll call tomorrow since this has NEVER happened before. Is it a potential side effect? Yes. I’ve just never experienced it before. A few other rare side effects have popped up, too. I’m erring on the side of caution.

Traffic was mostly avoided yesterday, which was awesome. 🎉 Boston’s tunnels make me feel like I’m in a James Bond movie and about to be shot at. Plus, they definitely mess with my head in the “sensory deprivation” sense. I was able to avoid returning with a migraine. My headache specialist is REALLY pleased with my progress. It’s helping my cervical spine tremendously, and since I was the first person to report remarkable results, she said, “Isn’t it amazing how, we don’t always know if something new will work, but we try it and we end up feeling so much better?” It nearly eliminated my daily neck pain and helped me reduce how many muscle relaxers I take. It has reduced my migraines by about 30-40%. I still get migraines, and there’s still pain to contend with, but they don’t attach themselves to my skull for 3+ weeks anymore. Going 21 days without a major migraine was shocking. Sadly, it takes a while to realize you’re not in agony every single day. Bear in mind, I still have Fibromyalgia to contend with, but help is help, and I feel relieved that this is something I might be able to stick with. 🤞

I chose, from day one, not to disclose the treatment method because I was already being judged by friends and a handful of family members, and because, from a public standpoint, I wanted to see how I’d do before talking about it. No one wants to discuss another failed effort. The fact that it’s successful doesn’t mean it will remain so. My doctor has a backup plan should this fail at any time, and I am confident in both options. Until I’m ready to discuss it, I think it’s perfectly okay to keep it private. Thus far, I highly doubt I’ve run into a subscriber in the building, but you never know. 🤷

I definitely feel blue today. I feel isolated, unsupported, stressed, and exhausted, but I’m trying to look forward towards better days. I KNOW they’re on their way.

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Black & White Photo Challenge 2019

I don’t know when I’ll be able to get the laptop I found. It’s doable, but not immediately within my budget, so I’m going to try to incorporate a month long photo challenge so that I’m still here, making contributions. I hope that sounds like something we can all get on board with. I will, hopefully, start up either later today or tomorrow. I might include the original color shot, as well.

I hope everyone has a great weekend.

Much love,

li

 

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. 😉

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