2018/05/24

If It Weren’t for Bad Luck

Da Goddess @ 15:29

If it weren’t for bad luck, I’d have no luck at all.

The day before my birthday, Mom was admitted to the hospital with respiratory distress. She went home several days later. I didn’t call because talking made her cough, so we texted.

I just got a call from my younger sister to let me know Mom’s back in hospital again for the same problem. Instead of going to her regular hospital, she’s been admitted to the hospital where Dad died. What’s more, it seems she’s in the same room. (Update: Mom’s actually in the emergency department as of 16:30, so she’s not been admitted.)

J is headed over there now to see what’s going on and will update me. C is, of course, dealing with doctors and Mom.

I almost went down to San Diego yesterday. C and I discussed it and we decided to hold off until next week sometime.

I feel like I’m stuck in a fucking loop right now.

Mojo and I had spoken the other day as Mom was getting settled in at home. Mojo told me, “Grammy keeps saying she’ll take her medicine but she’s done.” My mom had uttered the same thing several times while Dad was dying and again on Mother’s Day. I told her to hold off because we can only deal with so much at once.

This also has had me thinking of us gathering around Dad not long after he’d passed. Mom gasped, put her hand on his chest and said, “oh! I can still feel his heart beating!” She was in shock. I gently told her he was gone and she was likely feeling her own pulse through her hand. I double checked to show her and she looked, momentarily, defeated. I told her she wasn’t the first person to be hopefully mistaken.

While Mom has been conflicted about my dad got a long time, the simple fact is that they’d known each other for over 60 years and had a very emotionally complex relationship, what with marriage, kids, divorce, grandkids, and the rest of the things life throws your way. Being sad, angry, hopeful, relieved, and even confused is understandable. But it also highlighted how fragile she’s become, not just over the years, but in the space of a few days. Emotional conflict can bring with it health issues no one expects. I’m not saying Mom’s health crisis at the moment is the direct result of her emotional health, but her emotions are not working FOR her right now.

Dear God, please help Mom get better. Please help all of us deal with this in helpful and loving ways. And, pretty please, don’t let May become the month my sisters and I become adult orphans. We’re still working through the last loss.

Can I get an Amen?

17:00 Update: CT scan looking for blood clots. X-rays were okay.
17:30 Update: nothing obvious, so that’s good news. Tests all seem to be clear.
19:00 Update: Mom being transferred to her regular hospital where all her records are available for anyone who tends to her. I’m relieved beyond belief.

2018/05/18

52 — The Full Deck

Da Goddess @ 00:01

I’m 52 years old. Five. Two. A full deck. Or am I the “fool” deck? Sometimes it does seem like I’ve been given that role. But, nah. I think I’m falling into the positive camp this year. Despite all the ups and downs, I’m glad I’m here. Even if I am a bit worse for wear.

Technically, I hit “over-the-hill” a good while back. Emotionally, I think 39 was that year. Physically, ugh. I don’t know when it happened (maybe 2005 when I got hurt?). All I know is that none of it matters because I’m still hanging in here and that needs to be celebrated!

I’m not sure how I’ll celebrate, but it might include cake. It’ll probably include cake. Okay, cake will be involved. Are you happy? Yes, cake. One of the few pleasures you can share with as few or as many people as you’d like and not get side-eye for doing so. Except maybe from your doctor who’s worried about your weight and your blood sugar. But if you don’t tell, I won’t tell, m’kay?

52. If I were a deck of cards I’d be complete. Unless you want to play pinochle or canasta or some game requiring an expanded deck. But if that’s the case, why haven’t you invited me over for a game? Fair warning, I suck at pinochle and kick ass at canasta! You’ve been warned.

Go grab some cake and we can eat at the same time. I’ll be here. Just pull up a chair when you’re ready.

2018/05/09

The Day After the Day After

Da Goddess @ 09:02

I had a long night of thinking, of remembering. I dozed off a couple times, but really never slept. My stomach was not having it.

With inflammatory bowel disease you can never predict when your stomach is going to go rogue one you. And you can’t predict how long it’ll last. There are times when I’ll go months without a flare up and then have a bad day. Or maybe I’ll have a horrible couple of weeks followed by a day of relief, quickly followed by a month of horror. It’s really that crazy.

Were I insured or on Medicaid, I’d have tests to see if I’ve ramped up to ulcerative colitis. But I’m still waiting to find out if I’ve been approved.

Anyhow, stress can be a trigger for flare ups and I’d say death of a loved one counts as stress. It took a day or two to smack me upside the head, but it has most definitely done that now.

J cleaned Dad’s house yesterday before C even got there. I’d slept through the day and missed everything. Today, I guess we’re going over to sort through stuff? I’m not quite sure. I know C has been good about getting rid of Dad’s clothes over the past year as he’s worn out stuff or lost too much weight to wear it. We’ll have to get the rest of his clothes sorted and donated this week, I think. Better to do it now instead of waiting and letting grief smash into us again later.

Other notes:

I’m an idiot! I packed enough underwear for every day of an Everest expedition but failed to pack sleep pants.

I actually posted on Facebook yesterday after 7 months. I’d almost like to delete my account there, but a great portion of friends on there I don’t contact any other way. What to do, what to do…

2018/05/08

The Evening of the Day After

Da Goddess @ 22:40

I’d just awakened when I heard Mojo knock on my door. “We’re gonna go to dinner. Are you going to come, too?” she asked. “It’s *that* late already?!” I replied.

I haven’t slept that hard in a long time. The memories of my dreams are fleeting, but none were disturbing, so I’m grateful for that.

C took Mojo, LD, and I out for Mexican for dinner down by San Diego harbor. It was very good, but then I couldn’t tolerate another bite and my stomach screamed “none of this belongs here!” So, yummy food, bummy tummy.

Last night, no problem with the homemade beef barley soup and cornbread. Or the turkey sandwich from the comfort cart provided by the hospital. (I’m not kidding when I say Pomerado Hospital is one of the best hospitals on the planet!)

I guess eating whilst grieving is going to be an adventure of its own.

We’re back at C and D’s house. Mojo and I spent an hour going through photos on our phones, “oh! send me that!” and subsequently texting favorited images.

How did we ever manage to communicate before cell phones? The sheer ease of communication is astonishing! I texted my sister from bed this morning to save us all from yelling across the house. I do, however, draw the line at texting someone who’s sitting next to me. Unless it’s an urgent message and we’re in a “no-talk” situation. Or unless I’m sitting with a friend named Jacque in a bar in Vegas.

My mind is full of utter nonsense that keeps trying to push away sadness and important tasks relating to Dad. Thus, the existence of these ramblings. They have to go somewhere. Twitter is filling up quickly with them. This blog is, too. And I posted to Facebook for the first time in at least 18 months. Less about anything on Facebook, more just to let a couple people know, people who had known Dad.

I’m going to try to get to sleep early so I can be of actual use tomorrow. My sisters can’t keep carrying all the weight, nor should they have to. Fingers crossed I make it.

Dad, I am trying to get this right. I hope I’m at least coming close. I love you and will miss you forever.

The Day After

Da Goddess @ 09:27

I don’t know how any of us got through yesterday. Lots of love, laughter, and tears to be sure, but I honestly don’t know how we were able to keep going.

All of us had to have a lie-in at some point. (How pretentious of me to use lie-in as opposed to nap…it’s just that napping doesn’t quite seem appropriate in this context.) We had dinner. We talked. Mojo and I stayed up talking and watching stuff on YouTube.

After crawling into bed I realized I still hadn’t changed my clothes from Sunday, had forgotten to brush my teeth, and really needed to pee. It took me a full 90 minutes to get up to do anything about it.

Woke up at 0745 to the realization that my dad is really really really gone. I knew that yesterday, but it hit me afresh upon waking. I don’t know how to do this. I mean, I know, I just don’t KNOW.

I’m in total lockup today. Neck and back are not cooperating. I practically crawled to the bathroom. This is worse than normal as the sheer emotional momentum from yesterday has left my body. This definitely is NOT the day I anticipated having. I’m hoping I’ll fall asleep for a bit and wake up in better shape.

Sleep, though, I don’t know. So much keeps running through my head. I don’t remember how many times I prayed last night, but it was kind of all that kept me from crying. That and I didn’t have Fletch to cry to. That’s how I get through the bad moments at home.

Yesterday, while at the hospital, we had the chaplain come in to say a prayer with us. She was a pleasant little old lady with a slight lilt to her voice. All was going well (relatively well, I mean, we were heartbroken, crying, and generally in need of comfort) until she got to her third “Heavenly Father” in her prayer. At the next mention, I felt a giggle building. At the fifth mention, I kind of started to shake. By the sixth “Heavenly Father”, I was actively having to hold back laughter.

Her next parlor trick was telling us she was sure Dad was a lovely, wonderful, kind man. Mom guffawed openly. C and I laughed.

Cranky, grumpy, misanthropic, loud, rude…and, yes, a good man. Perfectly imperfect. That was my dad. I didn’t always understand him, but I always loved him. I was lucky to have almost 52 years with him. That’s a helluva lot more time than many people get with parents. I’m not feeling great about it, but I’m okay with it. I’m okay with it in that he’s not in pain any longer. I’m okay with him being free of the ravages of aging. Being free from illness, from losing autonomy, losing friends, losing the ability to do all the things he enjoyed. He’s at peace now and I have to learn to get there, too.

I’m extremely grateful for my sisters, brothers-in-law, my mom, the kids, my friends, and the staff at the hospital and hospice. Together we’ve made it this far and that’s something special in my book.

Each day, each moment will bring with it new challenges, but I’m a quick learner and I think I have a handle on getting through whatever comes up. No guarantees, just a sense that I can do this.

Going to attempt sleep again. Or maybe hobble out to the kitchen for a piece of toast. Then I’ll tackle whatever comes next.

2018/05/06

This is My Dad

Da Goddess @ 22:06

Dad

This is my Dad. The photo is from 2009. I don’t have any recent pics with me, so this will do the job.

We — my sisters, brothers-in-law, LD, my mom, and I — are at the hospital with my Dad. Mojo will be here in the morning.

We’re saying our goodbyes.

Dad’s been in slow but steady decline for at least a year, with something new cropping up every month or so. It’s overwhelming for him and for my oldest sister. She’s the main caretaker and the one who has been in charge of all his legal and financial affairs.

It’s tough to see Dad so frail and so out of it. Yes, this was inevitable, but when are any of us ready for the death of a parent?

On Wednesday, big sis, C, took Dad to the doctor. Dad said he no longer wanted to deal with tests or another new diagnosis (weight loss on a noticeable scale) and he was ready for palliative care. They talked about hospice and covered all their bases.

I didn’t know this until yesterday. I mean, I knew he’d lost weight since Christmas, but there’s been ever more since. I knew he was in decline, but I was hoping he’d rally. Deep down, I think we’ve all hoped that.

It’s not to be.

My brother-in-law, D, found Dad on the floor, unresponsive this morning. I knew as soon as I saw my little sis’s number pop up on the phone that it wasn’t going to be good news. Then began the frantic scramble to get down here. KA has been out of town since Thursday, I’m without a car, I have Fletch. So, scramble scramble scramble. A friend was kind enough to drive 25 miles to get me, 90+ miles down, and another 90 miles back. I spent most of the trip talking about NOTHING… basically avoiding the topic of my dad dying.

The shock of seeing him as I walked in the room was something I don’t think I can adequately describe. Or maybe I don’t want to think about it that long. All I know is the man in the hospital bed was a mere shadow of my dad. He would occasionally open his eyes, but he wasn’t really there. His respiratory rate was high, heart rate low, and blood pressure low as well. He’d eaten nothing since Wednesday (and before that, Sunday), despite my sister’s best efforts. When I’d talked with C yesterday, I told her he was becoming dehydrated (the man does NOT do water) with his constant diarrhea and lack of liquid intake. That’s not good for anyone, but especially not someone with multiple critical diagnoses. Still, there’s no making horses or old men drink if they don’t want to drink.

I’ve been here several hours now. Dad’s settled into a regular room on the fourth floor. He’s getting 1mg of morphine per hour for comfort. We can increase the dose if necessary, but we’re trying to hold off on that until Mojo gets here in the morning. Morphine, great as it is for easing pain, also depresses the respiratory system. While Dad’s respiratory rate is high, he’s working awfully hard to get oxygen to the rest of his body. I’m hoping he’ll be less agitated now and his heart rate will come up, BP will come up, and his respirations slow and deepen. Better perfusion means a clearer mind.

Since none of that’s likely to have any affect on his overall prognosis, comfort is the best option. So, comfort it is.

The best thing about him getting the morphine is that he IS comfortable enough that he’s had lucid moments and I’ve been able to let him know I love him. He even smiled a bit when I told him Mojo’s on her way, that LD had been here, that we’re all here for him, that we all love him very much. Even Mom. (Had they stayed married, Memorial Day would have been their 60th anniversary! Instead, they’ve split the difference… married 30, divorced 30. Go figure. Parents. What’s a kid to do?)

C and D are home, getting a break from the “vigil”, grabbing a bite to eat. Little sis J is now at work, tending to (among other animals) a dog in hospice. Mom is back at her assisted living bachelorette pad. LD is at home, likely processing the shock of this. 21 and he’s not been witness to death like this. His great aunt died in January, but he only attended the wake. Seeing death as it slowly takes away a loved one is difficult, even when you know it’s coming.

Please pray for a sweet, gentle passage for my dad. Please pray Mojo gets here in time. And please pray that we all remember to tell those important to us how much we love them.

2018/05/03

Insert Witty Title Here

Da Goddess @ 09:06

Compose compelling, funny, insightful post here.

Let me know when you’re done, m’kay? Thanks. Byyyye!

2018/04/05

Threefer Thursday: Wash Those Blues Away, or Maybe Just Bathe in Them

Da Goddess @ 18:11

I’ve been absent, yes. No excuse other than pain, if I’m honest. But pain is a huge part of my life and sometimes its control over me is all-consuming. Okay, more than sometimes. It sent me to hospital twice last week. It made me cry at the doctor’s office yesterday. It’s causing me all sorts of trouble in my head; trouble I can ill-afford.

My distraction techniques run the gamut of reading, TV, Twitter, and lots of cat pics and videos. Plus, there’s music. Lots of it.

Some of the music has a melancholic tinge. Some of it is overwhelmingly joyous. Most of it falls in between.

Today’s selections are emotive and have a touch of sadness to them. The only reason for this is because I like having a soundtrack for my tears. It helps to limit the length of time I allow myself to get it out of my system.

I should note that even though these songs have that blue bent to them, mostly I love them because they’re beautifully written and performed.

P.S. I know I’ve shared a couple of these previously, but it’s okay. We all need to be reminded of good music now and again.

P.P.S. the last one was for The Fat Guy. He was the one who introduced me to the magic of Ryan Bingham. I’m so glad I got to see Ryan perform and tell him how I came to be a fan. Even better was telling Scott about the night. Sadly, Scott left us not long after. I’ll always be indebted to him for his friendship and his free and open policy of spreading musical joy.

P.P.P.S. I ended this threefer on an upnote because I needed it. Hope it helped you, too. “Cause I’ve been broke down for so long
And Lord, it’s getting cold.” Amen to that.

2018/01/22

The Plague

Da Goddess @ 19:15

Current Mood: Dejected
Current Status: Infected with The Plague
Prognosis: Deathbed adjacent, chance of 11th hour rally

Whoever invents an instantaneous cure for the cough would make billions.

Really wish this would happen.

That is all.

2017/10/29

4668 Days

Da Goddess @ 05:50

4,668 days of pain. 4,668 days of frustration. 4,668 days of not having the life I’d worked so hard to achieve.

I feel even further from whole now than ever before.

That’s the current count. Just thought I’d share.

2017/10/18

Woke Up Dreaming

Da Goddess @ 13:36

Or maybe I should say woke up nightmaring, except I don’t think that’s a saying. Or even a word.

Woke up sobbing hysterically. It scared me to the core. I’ve never cried like that in my life. I couldn’t catch my breath. I couldn’t stop. I gave in to it for a few moments to see if that would help, and I guess it did, to an extent. But I remain shaken.

I’m currently going through another round of withdrawals from meds. This time, however, aside from the intense and unrelenting pain, I’m having more trouble with the antidepressants. I’m on two different antidepressants for pain management and have carefully been tapering off. Yet it seems to be hitting me harder this time. I’m not sure if that’s what’s behind the crying, or what. I only know I’m not faring well.

Waiting for the doctor to call back to advise me as to whether or not I go to the hospital, and if I do, what do I say?

This has been a nightmare. Twice in three months? No bueno. Especially when my crying scares away the cat. Yeah, that happened.

The only minor smile? A camping hedgehog. Go figure.

2017/10/01

Three Wheels and Sparks

Da Goddess @ 04:02

Ever have one of those dreams where everything is off…by just a little bit? On the surface, everything seems normal, but there’s something not quite right? Well, I’ve been having dreams like that for the last month or so.

I know that it all comes down to not having the meds I need in the right doses, but it freaks me the fuck out.

Trying to keep everything in some sort of balance is difficult on a daily basis for most people. With chronic pain, it becomes a battle no one wants to fight, but one you must fight nevertheless. It’s your way of life. It’s all you know.

I was barely hanging on with all my meds. Now, I spend even more of my energy on just trying to get through the day with the least amount of pain. It messes up my life and comes through in my dreams. Which, of course, means I can’t even escape for the few hours I fall asleep.

Because I’m not taking my Ambien regularly, I’ve found I sleep longer when I do take it. Again, it doesn’t mean that sleep is more restful or restorative, but at least I’m asleep.

Still, when I awaken, I’m left feeling off-kilter.

It’s a bit like driving around on a flat tire — your spare, because you’ve already had a flat and the closest gas station is 100 miles away. At least, that’s what you think, only to discover that station closed and the next one isn’t even on any map. So you drive on because you’re in the middle of the desert and it’s too hot to wait for another car to come along and you have no cell service. Yeah, that’s a fairly apt analogy. You know you’re damaging the car, but you have no other choice. It’s push on or perish.

My doc, oh my wonderful doc, he’s doing his best to find a way to get me my meds, to push through my spinal cord stimulator, to get me back to feeling somewhat human. I’m so grateful. And I’m grateful for King Arthur for not killing me in my sleep for making his life crazy. Trust me, this is what I’d likely want to do if I were in his shoes. But, he doesn’t, or hasn’t been successful in his attempts. So, yeah, I’m grateful.

Here’s to another day of driving on a flat tire, throwing sparks into the brittle heat of the desert.

2017/09/18

This Much I Know is True

Da Goddess @ 10:41

Chronic pain, chronic illness, depression, isolation… All of these things can make life unbearable. It happens to many people. For some, medication helps. For others, medication only barely gets them from one moment to the next. There’s no ONE answer for everyone collectively.

For one man, he found hope in a Broadway musical based on a hit movie. Groundhog Day the Musical. I happened upon his post and it not only touched me, it spoke deeply to the broken parts of me and the life in which I find myself.

Life is difficult for me these days. I’ve been without ads here, which means I have absolutely ZERO income. True, the revenue generated by the ads I did have was miniscule, but it was just enough to help with 1) paying a bill or two, 2) help buy the kids a gift for birthdays/Christmas, and 3) gave me a sense of security that at least there was *that*.

Aside from the ads, my back and neck have grown even more painful, leaving me wondering how that’s even possible. It weighs on me more each passing day, each passing year. I find myself asking, “is this really how I want to spend my life? Is this who I really want to be?”

Because this was an injury that occurred on the job, I’ve been at the mercy of a system that favors the insurance company, not the patient. I’m stuck in an endless cycle of praying an adjuster will approve my medications or a treatment the doctors feel will help me get control of the pain. Time after time, though, my hopes are dashed and it takes a toll on every part of my being.

Twelve and a half years of living this way has left me more cynical and dejected than I’ve ever been in my life. Despite the medications, my pain has become what identifies me, what defines me. I don’t like it: I don’t want to this person!

Because of the treatment I’ve received from the insurance company, my life has become a roller coaster without a safety bar or seatbelt…that goes underwater and I have no air tank.

I’ve spent the last month without the majority of my meds. Where some patients simply pay for them out of pocket and then submit receipts for reimbursement, I don’t have that luxury. With a VERY deep discount the pharmacist gave me, my monthly tab for my meds would be over $700. That’s WITH the discount! King Arthur and I just can’t afford to pay it. I don’t know anyone who could. So I’ve tried to make do with the bare minimum, which doesn’t do much of anything other than keep me from crying 24/7. I cry, but not ALL DAY LONG.

My attorney drove up here Friday and handed me $500 to help pay for the medications. I was gobsmacked. What lawyer does that? Yes, it’ll need to be repaid, but still, what lawyer does that, I ask you. I’m as grateful as I am stunned. And even with his generous loan, I’ve had to adjust my prescription order so that I get the most bang for the buck. I won’t be getting full prescriptions of several drugs, though I will be able to get the meds that are vital for me to function as your basic bitch.

While my lawyer was here, I signed a new retainer agreement because he’s filing a lawsuit against the insurance company. This is not the norm for a work comp case. However, because they’ve continually played fast and loose with my care it’s our only real option. My brilliant attorney has also filed a formal complaint against the insurance company with the state.

We’re in uncharted waters here. In my attorney’s almost 50 years of practice, he’s never had to do this. He’s never come up against a company that’s so reckless with a claimant.

I doubt there will be a big payout from the lawsuit. I doubt they’ll be run out of the state. But at least we’re DOING SOMETHING! It’s my little glimmer of hope. My only glimmer of hope.

And this is why a total stranger’s post about a musical has given me pause. I’m lucky enough to see a new day, to still be breathing, to fight for my rights to adequate healthcare as the law dictates for injured workers. Maybe my case will save someone else from my nightmare. That thought is enough to make me keep looking at the horizon, hoping to see the first rays of sunshine each day.

All of this… all of it comes down to a Broadway musical I haven’t seen, but whose very message has had a ripple effect on the lives of enough people that its message has been spread far and wide.

I’m off to look for my sun today and tomorrow and the next day and the next and on and on.

2017/09/03

Don’t Dismiss the Miss and Her Pain

Da Goddess @ 08:47

As you all know, chronic pain has been my constant companion for the past 12 years. As far as getting treated for it, I’ve been fortunate enough to be taken seriously. (We’ll leave the discussion about the insurance company and their shoddy treatment of me for another time, m’kay?)

But, the fact of the matter is that many women find their pain is minimized by the very people they turn to for help.

I read an exceptional article this morning to which I will now direct your attention. You can come back with your thoughts and we can discuss afterwards, if you’d like. I’ll be here.

2017/08/24

The Ol’ In and Out (S)urge(ry)

Da Goddess @ 06:21

I’m currently on my way to the outpatient surgical center to get my spinal cord stimulator trial!

This is a big deal for me. It’s a step toward possible ACTUAL pain relief.

Unfortunately, we’re due for a major heatwave during the week I’ll have this thing in my body. And I’m not going to be allowed to shower. (I’m totally going to find a way to shower.)

Fingers crossed, eyes dotted, prayers almost non-stop. Hoping I don’t barf before or after the surgery.

Wish me luck!

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