https://themighty.com/2017/05/sjogrens-syndrome-hiding-pain-behind-stern-expression/
Health
It’s Possible To Feel Worse
Just when I thought it wasn’t possible to feel any worse than I have these last few weeks, I woke up this morning and the pain is at an all-time new high for INSANITY.
You know those pain scales every doctor’s office has posted with idiotic faces? There is no logical way to say “Oh, I’m at an eight.” when in fact you’re at a fifty for your own personal pain threshold. We’re all drastically different. What I do on days when my pain is at a ten are things that would kill the everyday, average person. The pain scale is one of the most inaccurate things I’ve ever witnessed in life. It’s also unfair to those who suffer daily. It tells you that a ten is “The worst pain you’ve ever experienced in life”. That’s most days for me, it’s not “on occasion”. A five or six would be my every day baseline according to that chart, but as I stated, it is inaccurate. I have no choice but to function at 50-85% pain every day of my life. Give me a chart for that! 😦
There are pains we’re warned about in life, at least as women. Menstrual cramps, childbirth, toothaches, ear infections, sinus pain & pressure, a burst appendix, gallbladder pain, post-surgical pain, broken bones, etc., but nothing in life quite prepares you for a searing migraine that will not go away OR the physical body pain that has decided to accompany it, courtesy of Fibromyalgia. My arms, legs, every muscle, joint, tendon, and perhaps things I may have missed are on fire. This comes from a ravishing creature who sat through four tattoos and didn’t bat an eyelash. That felt GOOD compared to what I am currently experiencing, and yes, I paid for that “luxury”.
My main task yesterday was showering, getting dressed, and getting my butt to Urgent Care. This sounds SO easy. Have you ever tried showering when half of your body doesn’t want to move or work properly? It makes it a very tedious task, indeed. I pushed through though, after a short nap (When you’re an adult who needs naps, it’s not the kindergarten kind of nap one dreams of. It’s the nap where you’re desperately trying to rest and your cell phone genuinely needs to be tossed out a window, except you need the damn alarm on it, on the off-chance you over-sleep.). I had reserved a time slot on their website on Thursday, and that had been a very smart idea because when I arrived, they took me quickly.
So, how do I feel today? STUPID. I will never go to Urgent Care again for a migraine. I asked them in advance if they handled severe migraines and they said yes, but this is clearly more suited to the emergency room. It’s technically NOT an emergency, but it IS when you need access to the medications an ER can provide that a walk-in clinic doesn’t have on hand. Sad, but true.
I was treated perfectly fine, they were very caring and kind, but after I got home, the anti-nausea meds I’d been given in the IV, along with Toradol, proved they were not only ineffective, but I am clearly allergic to one or both of them. I took a second dose of the anti-nausea medicine (normally given only to cancer patients) before bed and I am paying for it this morning. I’m nauseous AND my stomach is on fire, which makes me wonder if my ulcer has returned. I had one years ago and it took a long time before it healed (I was warned that with too much stress, it would return) and I could stop taking medicine for it, but that is pain you NEVER forget when you’ve live with it for years on end.
I have had ZERO pain relief. This means calling my doctor on Monday and making an appointment because I can’t get through a month of this until I see my new neurologist. If it is indeed my ulcer, I can go back on probiotics or OTC Nexium until I can see someone, but it is CRAZY to suffer like this.
The worst part in all of this is that I do NOT want to get out of bed. Technically, I already am (Kitten was crazy aggressive this morning because I was late getting home to feed them. She thought breakfast time was the second my head lifted off the pillow!), but my point is, I want quality rest, not six fitful hours of torture vaguely masked as “sleep”. And for the past few days, more than once, I have wondered how much stress factors into how I am currently feeling and what I am going through.
Stress can cause so much damage, and oftentimes, we don’t consider it as a factor in our health issues. I can’t remember which doctor asked if I was under a lot of stress (I believe it was my neurologist, though. It was a long time ago.), but I do remember saying “YES!” His answer was “You need a vacation.” Gee, why didn’t I think of that?! <rolls eyes>
Wouldn’t we ALL love to go away and completely detox from the stress of our lives (Relax, I didn’t say we all had to go together!)? Yes, most of us would. Anyone who says they have zero stress in their life is lying, or a delusional billionaire.
Pain should not make you feel like you’re being eaten alive by a Komodo dragon, but sometimes, that’s exactly what you feel like. I wish I could say I was being dramatic. If anything, I’m downplaying it. 😦
The best part of my Urgent Care visit was the doctor saying he doesn’t think I suffer from migraines. Excuse me?! Every highly educated neurologist I’ve ever seen has declared that I do indeed suffer from migraines, but you think it’s “just tension“?! My blood pressure was through the roof; that’s not tension, that’s PAIN. Mind you, a smarter doctor would have seen fit to provide me with muscle relaxers if he thought it was “just tension“. My neck is indeed tight and sore, not to mention achy as hell, but it’s dealing with a lot and I chose not to disclose my spinal damage to him since it’s already in bold-type in my chart. A chart he couldn’t seem to read since he repeatedly asked me the same questions over and over again.
I’ve learned my lesson. Urgent Care isn’t suited to migraines. Unfortunately, a busy emergency room isn’t much help either, but if ever I am in this position again, that’s where I’m going. Under duress.
To add insult to injury, the pain medicine he prescribed couldn’t touch any of this with a ten foot pole. I took one last night in the hopes it would help, but it didn’t touch the migraine (it helped everything else temporarily). Even better, he claimed on the prescription that I asked for half the normal dose, which I did NOT. No sane pain patient would ask you to give them less pain medicine for the same price. That’s over 50 cents per pill for a medication that doesn’t even cost 10 cents to make. My insurance company should be shot for charging me full price.
I honestly just want to lie here and moan. 😦 But mostly, I am praying this horrible nausea goes away. Obviously, today is one of those days where you have no choice but to stay in bed and rest. Bleh! I hate days like this.
Wishing you all a stress-free, no-pain weekend. I hope someone had good Mexican food for me yesterday. As bad as I feel, I would murder someone for a taco!
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
Chronic Fatigue Is Not Just Me ‘Being a Teenager’
https://themighty.com/2017/04/chronic-fatigue-not-being-tired-teenager/
A friend of mine mentioned that her daughter was experiencing a lot of the early signs of Fibromyalgia, but no doctor had diagnosed her with it yet. Aches, pains, migraines, dizziness, exhaustion. It was like hearing someone talk about me at the same age. So, I share this for concerned parents that worry that their children aren’t being heard.
Too Many Thoughts That I Can’t Process

Today is one of those days where I just can’t seem to break myself out of how bad I feel. Physically, mentally, and emotionally. I caught myself last night, while making dinner, realizing just how done I am. It wasn’t a temporary feeling. It was a “What’s the point in this life?” feeling.
I’m still experiencing the same migraine I’ve had since the 18th (I might be off on the dates by a day or so. I can’t check at the moment because my new cell phone battery is walking on tiny feet all the way from California. The info for my migraines is calculated by an app on my phone.). It got so bad Monday, I called my doctor’s office. There is nothing helpful about a doctor telling you to go to the emergency room, Urgent Care, or to “come in” when you’re barely able to get out of bed. Technically I was out of bed, I just wasn’t dragging myself anywhere because I couldn’t. When her office asked me if they should call an ambulance or if I had someone to call to help me, I was so upset, I nearly threw the phone out the fucking window. After that, I did NOT want to speak to a soul for the remainder of the day. The realization of how alone you are is not something you need to be drilled into you day after day.
Yesterday was a blend of so-so and really bad. I was up until nearly 3:00 this morning dealing with the nausea, and the aftermath. I got less than four hours of sleep in total, and I hurt from my head into my toes. It’s a beautiful day, the temperature is perfect, the sky is that perfect shade of blue, and I’m trapped indoors, hiding from the sun, the sound of lawnmowers, and birds chirping, all because my doctor couldn’t call in an anti-nausea medication when I explained how bad this aspect of my migraines is currently affecting me. Where the hell is good old-fashioned Coca-Cola syrup when you need it?! I’d murder someone right now for the biggest Coke from McDonald’s. That’s sad considering I don’t drink soda, but it tells you how awful I feel. Nothing is helping.
Today, after taking an important phone call I need to take in about an hour or so, I might unplug my phone entirely. I’m genuinely sick of people. I’m sick of being sick, and I’m sicker of being minimized when I talk about how I feel.
Sadly, a migraine is NOT an emergency. It’s not life or death, and I’m not having a seizure or a stroke. Unless it is the worst headache I’ve ever experienced, (I told my doctor’s office “It’s up there.” I cannot answer that question. Obviously, if it were a mild migraine, I wouldn’t be calling, but to be asked, “Is this the worst headache you’ve ever had?” Um, I’m a MIGRAINE PATIENT. NONE OF THEM ARE FUN EXPERIENCES!) I don’t want, or need, to be in a noisy emergency room where, without a written migraine protocol from a neurologist, whoever is on call can choose how I am treated, and they can blow me off.
The last time I went, the ER broke my migraine protocol and refused to give me a shot of Demerol. My doctor was furious, and it was enough to keep me away from the ER regarding my migraines ever since. You do NOT need a single medical professional questioning your doctor’s protocol for you, or standing in a group with a bunch of other “medical professionals” whispering about how you “might be drug-seeking”. For the record, I’ve never had a shot of Demerol in my entire life, so for anyone to use my name and drug-seeker in the same sentence just plain pisses me off.
Yes, I have received pretty good care here, but I don’t want to push my luck, either. If the migraine and nausea get any worse, I will have no choice. I’ve already contacted Urgent Care and they said they do handle migraines. It’s a much quieter environment, more contained, and I could go Friday afternoon or early evening. In all likelihood, they will run an MRI and possibly take some x-rays of my neck and spine before they given me any medication. That’s standard operating procedure since they don’t have my records. But today? I can barely handle what little I do have on my plate because if I add anything more to it, I can’t deal. And the truth is; I can’t deal. I can do mindless tasks, like folding laundry, but I can’t think straight. I catch myself blinking too much and unable to fully process what people are saying to me. That’s never a good sign.
I HATE being sick. I hate being so depressed and stressed that I can’t handle a phone call, or a cup of tea. I hate not being able to concentrate. This is NOT a life. It’s too much pain for any one person to have to endure.
I pray that I survive these next few days. I’m definitely going to get this migraine handled. By Friday, it will be nearly three weeks of incessant pain and increased nausea. My neurology appointment isn’t until June, and I cannot wait that long to be treated. If they do blood work, they will find that all is not right in the land of Lisa.
What else is new? 😦
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
Cat And Kitten Send Mommy To The Doctor
I know what you’re thinking. “This is the first time they’ve thought of it in all the years they’ve owned you?!” In all seriousness, I made the appointment myself, long before my Urgent Care fiasco of last Tuesday.
However, at 5:00 a.m., I really don’t need Large Paws (Kitten) walking all over me from head to toe to shove me out of bed. I’m not sure what that was about, other than to annoy me and get me into the kitchen to give them their breakfast. Five a.m. Really?! Since when is that acceptable?! I mean, it was still dark out (at the time). This is what happens when you raise food-aggressive cats, people.
When I woke up and started making actual sounds, having dragged myself to the cough medicine, I heard Cat plummet down from wherever she was with a little “Boom!” onto the hard wood. The second I do anything even remotely interesting, day or night, I am subjected to the “Boom!” and her elephant steps come flying down to see what I’m up to. I walked into the kitchen and said “Are you both in here?” before turning on the light. There is NOTHING normal about that kind of behavior, or discussions with cats who only want food and nothing else. I swear, I won’t see either of them until I get home from the doctor. Unless I’m feeding them, they now have zero use for me whatsoever. Can you feel the love?!
Later today is my first appointment with a new doctor in a little over five years. My last one went a little something like this “I don’t want anymore pain patients!”, which was practically yelled at me, disdain as long as a month on this doctor’s face. Yeah, and I don’t want a doctor with a stick up his ass, but “pain patients” are probably the reason you can pay your student loans from the subpar ‘medical school’ you went to and we’re probably the reason you can make your car payment each month, so shush.
If you’re a D.O. and not an M.D., you didn’t go through the same training methods or learn the exact same things. If I wanted someone to treat me holistically, I’d go to a naturopath, not a D.O. Call me a snob, but I want someone who has their shit together, regardless of the two letters after their name. I’m a person, not a number in a chart. I don’t want to be passed on to the Physician’s Assistant (especially not this doctor’s assistant who could have killed me if I wasn’t a smart patient that spoke up last week.), Nurse Practitioner, etc. I just want to keep it real. If I have to wait weeks on end for an appointment with the actual doctor, then I want to SEE the actual doctor. It’s not a lot to ask.
I go in today with zero expectations. Honestly, they couldn’t be any lower than they are. I did write up a detailed medical history for her since it’ll be a while before she gets mediocre-at best records from my previous physicians. The lab is next door to the doctor’s office, so I suspect my first order of business is to be thoroughly vamped. Good luck. The only way you’ll get so much as a drop of blood is by going into my hands or wrist. You might have better luck with a paper-cut. At the mere mention of blood work, my veins disappear. I typed that and only two are visible in my left wrist and forearm. The others have gone bye-bye. They’ve been through a LOT over the years. 😦 My appointment is a little before 3:00 PM, so there’s no way in hell I’m fasting on the potential she wants to run tests I don’t actually need. I don’t have diabetes (Thank God and Goddess.), but she can run a hemoglobin A1C ’til the cows come home. The only thing I think will be high is my cholesterol, because it runs in the family, but it’s always been good previously, so I’m not going to agonize over it. My white count will be elevated, as it always is, which is indicative of an infection OR an autoimmune disease. This time, it would be hard to tell which because I’m fighting off two infections. I’m usually just fighting my body. 😦
In the history report I started with concussions and worked my way up to the reason I’m going there. Not once in this report do I use the words “Chronic Pain” or “Fibromyalgia”. I decided I want to be diagnosed properly, and therefore, she can refer me to a Neurologist and a Rheumatologist, and whomever else for that matter, but I’m not using those words until a new doctor does. I do not want or need another doctor treating me like crap because the words “Chronic Pain” and “Fibromyalgia” make them uncomfortable. Or worse, label me as a “drug seeker” when I am not. I’ve never once asked or demanded pain medication from a doctor.
I am still recovering from the infections I have and the case of Bronchitis. I missed a couple of doses of antibiotics, so I still feel pretty awful. My sinuses are terribly painful. I keep hoping it’ll rain and that some of the pressure will ease, but thus far, not a single rain drop. Figures.
I won’t lie; I’m concerned that so much is wrong with me and that no doctor on this planet will ever get to the bottom of it. I’m sick to my stomach, wondering what I’ve inherited genetically considering my brother has had a quadruple bypass, which the doctors said was not anything he did or didn’t do health-wise, but a genetic issue. Both of my parents had heart issues young; my mother died as a result of her heart giving out. My Grandfather died at 40 from a massive heart attack. More than half of my family has had or had cancer. So while I’ve got good genes in the looks and youth department, internally, I have just cause to be concerned.
I am the only person in my family with any form of Chronic Pain. My brother told me that his migraines got better post-bypass surgery. Ever since then, I’ve wondered if my heart is a ticking time bomb waiting to take me out, despite being told twice that it’s healthy and working as it should. And when it comes to cancer, I have a lot of cause to worry as a non-smoker who was subjected to secondhand smoke for the majority of her life, which is precisely how my Grandmother got cancer, twice. She also hid from the sun my entire life and still managed to get skin cancer. I’ve spent the majority of my life covered in sunscreen, and now and then, I still get a little burn here and there if I haven’t reapplied and have been out in direct sunlight longer than two hours. We talk about global warming, but we should also address the holes in the ozone layer when we discuss the need for sunscreen. People are developing allergies to the sun, and are wearing SPF 100 just to be outside for 10-30 minutes a day, if that. Hell, they have to wear it indoors too, because UV rays can and do come through the glass.
Less than an hour has passed since I fed Large Paws and Bunny Paws. I haven’t seen them or heard from them since. They’re doing a lot to boost my self-esteem, let me tell ya!
And so, today’s journey begins with pulling my shit together, preparing myself for this appointment, and going. Like I said, my expectations are low, but I’ve managed to work myself up into some very respectable panic attacks between Sunday and this morning. 😦
Wish me good luck. I keep hoping I’ll just be hit by a MACK truck and be able to call it a day. What can I say? I’m tired of this crap.

copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
How Anxiety Gets In The Way During A Typical Day
https://themighty.com/2017/04/how-anxiety-gets-in-the-way-typical-day/
This is not how I would personally describe anxiety, but everyone’s discussion on the subject at hand will be slightly different. Mine, however, is drastically different.
