Life Is Full Of Everything

Nine years ago today, I lost my mother. I can’t always say it out loud, I can’t always talk about it, but I honestly have no clue how I’ve survived this long without her. Not because I need someone else in order to survive, that isn’t it, but because life is full of people that mean something to you, or at least, that’s what life should be.

Stupidly, I sometimes expect certain people to be a little more like my mother, and they aren’t. On a scale of my Mom to them, they’re epic failures. They don’t mean to be, they simply cannot be her. No one can. Irreplaceable people are precisely that; irreplaceable.

I have spent the past year and a half holding on tight to everything near and dear, and I’ve been a failure. I have needed help, and I’ve allowed my health to fail in the process. But ultimately, I have actually needed kindness, compassion, understanding, a person who listens, and someone who can put me first sometimes. No one ever does. Not for long.

When you go from being someone’s daughter to just being a person, there is a great shift. Suddenly, nothing is right in the universe, but there’s no way to fix it. And so, you move from one thing to the next at your own pace, trying to succeed and make a person proud, a person who is no longer here. Inevitably, there’s nothing you can do, because life is full of everything.

People, places, things, photos, shared moments, building memories. That’s life. It’s laughter, misery, friendship, companionship, love, and so much more. I went from being a daughter to just being. I’ve spent nine years trying to figure out who the hell that is. I still have no answers.

Hours before her death, the last words my mother spoke were “I love you, too.” I’d been sick for weeks at that point from Fibromyalgia pain. I couldn’t get out of bed, couldn’t move, and I had missed Mother’s Day the weekend before due to pain and a migraine. I felt like the biggest piece of crap on the planet. So getting the call that my mother had gone into cardiac arrest was like lightning striking through my entire body. I remember exactly what I was thinking and exactly what I said. I also remember thinking “This cannot be happening. This can’t be my life!”

After losing my mother, I got a brief respite for a few years before more damage could be done to my psyche. But as I sit here today, I realize some damage may be irreversible.

When you’re sick and you’re hurting, Google is your worst enemy. So tomorrow, I see my doctors’ Nurse Practitioner to see if she can be of any help in figuring out why I am suffering to the extent I am. Unfortunately, I suspect the only thing I will come away with is additional referrals to more doctors and maybe a prescription, or two. While there, I’ll get my lab work done. That should be an interesting experience. I hope someone reminds me to pack a snack. Especially since it’s going to be over 90 degrees tomorrow and I’m basically the Wicked Witch who will melt, with infinitely better skin. 😉 It’s 91 today and I can barely breathe.

Today has been a shaky day for me. I’m unable to function, unable to think, and it took repeated phone calls to find out what I was forgetting (and G-d help me, I WISH I had just let it go because when I did find out what I’d forgotten, knowing something wasn’t right with my memory, I wanted to crawl into a hole a die. I have less than 20 hours to solve the problem and quite frankly, I’d give up completely if I didn’t feel that not giving up was the right thing to do.). That I could not remember something from last week definitely makes me question what the hell is going on inside my brain. I want answers, not more questions. I’m terrified knowing I, once again, have to ask for help and that I might very well get shot in the process. It has occurred to me that, quite frankly, few people care to have your back when you’re down, but damn, they want you to have their back when they’re in the same place as you. They want you to fix their problems and make everything better, but are very happy to cast you aside once all is well in their own world. It doesn’t make you feel very good, and they’re, unfortunately, too stupid to understand that something isn’t right and they should reach out.

If we’re close and I say “I’m fine.” or you ask how I’m doing and I don’t answer, I urge you to look deeper. It’s extremely rare for me to say “I’m fine.” or “I’m okay.” when I’m not. If you dismiss it and take it at face value, then you’re showing me that you really don’t give a damn, because you’ve just accepted a blatant lie. I can’t remember the last time I was “fine” or “okay”. I wish people weren’t so self-absorbed and took a minute to really connect sometimes. No matter how good or bad my life may be, I still check in with people. If someone tells me they’re fine and I sense otherwise, I call them on it. That’s the mark of a true friend/family member.

I rarely go to the doctor. I’m not fine. I’m not okay. And quite frankly, I’m afraid for my life and sanity.

Life may be “full of everything”, but right now, life is empty, scary, lonely, and heartbreaking.

Here’s hoping my prayers are answered and that someone, somewhere, is looking out for me.

Lisa-blue

copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

 

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

migraine

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.

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.