I'm still here...

It's been a frustrating bit of one step forward two steps back and I'm just tired, tired, tired.  I went back to work and I was really, really happy about it only to end up in the hospital one week after going back which of course makes me feel like a jackass and I want to say I am not unreliable my body is unreliable but you can count on me but of course my body and I are inseparable so what's the diff?!?

So I have pyelonephritis with "inflammatory changes" to my kidney which is concerning but there is some confusion as to what's actually going on so who knows.  I've had two kidney infections in the last four months and now I have shingles which also hurts like CRAZY but isn't a big deal just annoying, right?

I want so badly to be healthy.

I don't want to be in pain every day.

Alas.

This is how autoimmune diseases like Lupus work: you take a bunch of meds to quiet the disease and then you can't fight off infections so you're sick all the time anyway.  What to dooooooo?!?

I don't know, honestly.

I should be back at work (again!) later this week.  Hope I am strong enough to do this.  I want to do this.  I want to have a normal, active life.

I want to work and write and travel and hang out with people I love because it all goes by so damn fast.  I see my mom curled up in her wheelchair and I think about illness, old age and death.  I wish I could make things better for her.  I've been looking at old photos and thinking about what lively, vibrant people my parents were not so long ago.  They weren't prepared for what was coming--a dementia diagnosis for both of them--but maybe that's for the best?

If I get through this hard week I'm going to devote some days to writing.  For Mom, for Dad, and for me.

When You are a Writer Who isn't Writing

It's been a quiet season, this period in my life defined by illness--both my own and that of my parents--and writing about anything has been a challenge.  Words prove slippery, elusive, hard to grasp.  I want to hibernate--to drink endless cups of fancy tea, binge watch Netflix, wrap myself in blankets and shut everything out.  My dad passed away in November.  His last few weeks were awful.

As a part of reclaiming the life I loved before everything got hella complicated, I decided to challenge myself to make writing part of my daily practice again this year.

The last four years have been an emotional shitstorm. I've spent more time Not Writing than Writing.  Hopefully, the hiatus will be over this year.  I'm ready to get back to it.  But...where to begin?

One of my goals is to read more, and to write more book reviews.  It's a good starting place: to immerse yourself the work of others and support your peers by buying their books and sharing what you love about their work.

I'm happy to see so many writers (myself included) getting back to their personal blogs, too. I find there's a depth to these blog entries that's lacking on social media.

I'm feeling ready to write, edit, and submit work again.

I'm grateful to my wonderful writer's group (shout out to No Crying in Poetry!) for keeping me from walking away from writing during this last, difficult year.

I've missed it all so much.

***

Dearest Darling Self,

Welcome back!  

Welcome back to reading and writing.

Welcome back to blogging and connecting.

Welcome back to submission anxiety and rejection. ( It will be okay. I promise.)

Welcome back to poetry.

Welcome back to flash fiction and essay writing.

Welcome back to blurbs and reviews.

Welcome to a whole new season of being a writer.  It might be very different from your previous experience.  Your voice has changed.  Your writing has changed.  This is to be expected.  

Everything is going to be fine.

Love,

Susan

Anxiety Mode

A friend recently posted a really accurate description of his anxiety symptoms on Face-bot this week and it got me thinking about how those of us who suffer from daily anxiety experience the world differently from those who do not.  My family cannot relate to the nausea I feel at the thought of dialing the phone, or the fear and panic I experience at the sound of a ringing doorbell.  They think it's weird.  Maybe it is.  But it's still how I feel.

It's not something I can control in terms of having this anxiety.  Sure, I can make a phone call despite my fears (rational or irrational), but being functional doesn't mean I'm not dealing with something significant.  And it's EVERY DAY.

* I worry about my loved ones experiencing injury, illness or death all the time.  If they aren't right in front of me, there's this ever-present thought that they might be hurt or dead right now but I just don't know it yet.

* I really do love people, but the thought of interacting with anyone is really complex: I will probably embarrass myself, say something dumb, inadvertently offend. I dread it.  Even a trip to a store or doctor's office is prefixed with this anxiety.  The I DON'T WANT TO screaming inside my head that I must try to ignore.

* Both of my parents have dementia and the responsibility for their care overwhelms me daily.  They are in a Memory Care facility, but I visit often and take care of their bills, shopping, etc.  I feel as though I am carrying a boulder that crushes me slowly.  I want to do everything right and fear it's never quite enough.  They have degenerative diseases and keep getting sicker no matter what we do.  It's just so damn hard.

* I am overwhelmed by the little things: the spiky weeds popping up in the front yard, the crack in the driveway, the groceries in the fridge that might spoil and be wasted if we don't consume them quickly enough.  We went to Costco yesterday and now there is too much food in the house and it's actually freaking me out.

* I am having intense, intense anxiety about my weight.  It fluctuates (sometimes wildly) due to multiple chronic illnesses and it makes me feel as if the world is spinning out of control.  I gained 25 lbs on high dose prednisone followed by a 50 lb weight loss due to digestive disease.  I've now gained back ten of those 50 and I weigh myself every day to see if it's up or down and panic as it inches upward again.  Oddly enough, I know this signifies that my illness is under control and I'm finally able to get enough nutrients, but because I know how much kinder the world is to women who are thin, it frightens me.  I know that's royally fucked up.  I used to be totally comfortable in my body, even when I was at my normal weight (about 20 lbs heavier than I am today).  Not now.

* I am not currently medicated for anxiety (although I have been in the past).  I can still leave the house, make the phone call, appear functional to the outside world.  But how do you control your wild thoughts, your pounding heart, the fear you carry with you always?  I don't know.  Maybe it's just a natural state for some of us.

* The current political climate is beyond horrifying.  I think even those of us who don't suffer from anxiety can relate to feeling that we are watching the world implode as hatred and cruelty become mainstream.  I ask myself: what can I do to make things better? Am I doing enough?  Crowds terrify me.  But I want to help, to make the world a place where kindness and respect triumph over fear and hate.  I think about this so much and often feel just helpless.

***


I vote and I support those who fight for a better world and I try to treat people with kindness and challenge hatred when I see it ( and yes, I have had some heated political arguments with people, even though it's difficult), but there must be so much more I could be doing.  This haunts me.

Is there power in practicing empathy, in being a good listener instead of just waiting for your turn to speak? Is it enough?

All I can say, Anxiety Friends, is that I love and understand you.

Hello again, blog

I've been struggling to write, at least formally.

Dealing with my parents' illness seems to have sapped all the (limited) energy I once had...

TRUE CONFESSION: I don't want to see them sometimes.  It's so painful.  I try to go at least once a week to sit with them and bring them treats and necessities.  The last few visits have been really awful.  My dad barely responds to my presence.  Now I just sit next to him in silence sometimes, because he doesn't talk very much, except to grumble about getting out of there.  I don't think he knows me.  I wish I could comfort him, but there's no way to reach him.  I picture his brain, shrunken and clogged with amaloid plaques and neurofibrillary tangles, and wonder: how much worse is it going to get?

With my mom, it's even more devastating: she's very, very delusional and while she will sit and talk to me, nothing she says makes much sense.  Sometimes I think it's like she lives in a waking dream, forever lost in this hallucinatory world where she's being stalked by the devil and her children have morphed into cruel wizards or at other times are all lying dead in their coffins and my dad's face is melting and all the elderly residents in her facility are having wild riots and throwing chairs and her books have been subtly altered to mess with her head and her toothpaste has been poisoned.  It's more exhausting than you can even comprehend.

I would like to get back to writing poems again, but my head is not in the right place.  I just want to shut down, check out, lose myself in books or binge-watching or sleep.  I don't know if I will get back to any kind of creative work at this point.  It just feels so unreachable.  I tell myself this will pass, but I just don't know. Maybe it won't.

So, I come here and write, because at least that's something, to journal, to get some thoughts down, to say something.

I am, however, grateful for many things: my supportive husband and son, the medicines that have brought my own illness under control so I can function better, good books, good tea, a good night's sleep.  

Health-wise, I am okay.  I just got (another!) cortisone shot for my right knee and I'm definitely walking better, although it took a while and seemed significantly more painful this time.  I couldn't walk at all the next day and was almost in tears.  My stomach is still screwy but functional enough to get by...I'm looking at some herbal supplements and a different digestive enzyme to see if that might help with my gastroparesis symptoms.  I've got the vomiting under control, but still struggle with pain, nausea, and severe reflux. I've also been dealing with recurring ulcers on the roof of my mouth, which is minor but still sucks. Salt water rinses all day long, yo! I've been on Benlysta infusions for almost a year now.  I believe it has really lessened my symptoms and my labs look much better, so that seems like a legit observation, yes?

Okay my lovely blogstalkers!  That's it for now.

XO

All Good Things, Really

It's amazing how leaving an unhealthy situation can change your life so dramatically.  I feel so much better lately.  I am excited to finally get back to work on some writing projects, to cook wonderful things, to be with all the people I love.

Life with mom and dad is still heartbreaking, but you learn to love the small moments.  Sometimes I see people their age who are healthy (able to care for themselves, travel, live independently) and it's hard not to make comparisons about quality of life.  Dad doesn't speak very often and barely lifts his head.  Mom has both physical and cognitive impairments that leave her unable to lift herself from a chair or even put on a pair of pants by herself.  She believes there is a nemesis who steals her toothpaste and creates "fake" copies of her books to torment her.  She believes she receives anonymous, threatening letters (memory care residents do not get mail).  She believes my sister works at the nursing home but does not speak to her and that my brother (a lifelong bachelor) has a "secret" wife and baby he is keeping from her.  I have to remind myself that while these things are not real, they are real TO HER.

So, distraction is the best strategy.  You cannot talk someone who is suffering from neurological impairment out of a delusion.  Instead, you must change the subject.  Talk about sitting outside during a bright blue and green spring day, about favorite places to go and favorite foods.  I bake them cookies, which seems like a small thing, but it makes them so happy. Last week I even managed to corral them into a game of cards! Dad and I played as a "team" against Mom. We played War and he did flip over some cards for me and point to the images, especially the face cards--the Jacks, Queens and Kings.  We "won" two hands and I asked him if we needed to play again to give Mom a chance to win and he said "Why not?"

It was a really good day.

I am cooking again!  My stomach is still dysfunctional (once you have damage to your organs, that is pretty much that), but it works well enough not to need a feeding tube or TPN which is really, really fortunate.  I am hoping that all my medication has my autoimmune diseases under control so there will be no more new and major issues.  It's March already so I want to make Colcannon Soup and Irish Soda Bread and maybe a fancy Chocolate Guinness Cake!  I have to be careful what I eat and how much but soup and bread remains a pretty safe bet! I've been taking digestive enzymes to help break up the food (Papaya extract).  Ginger and Mint are also awesome for digestive troubles--I take them in teas and lozenges.

Oddly enough, Probiotics make me super-sick.  I think they contribute to bacterial overgrowth because I have dysmotility, but who knows?

I am working on a book review and writing pieces for the manuscript that I am thawing out after letting it languish in cryostasis for a couple of years--heh! I miss being an active writer and poet.  It's been harder than I expected to to make it a daily habit, but I'm getting there.

Listography:

Reading: Just finished Night Film and The Word Exchange and I am currently reading A History of Wolves by Emily Fridlund which is so beautifully written it's kicking my ass.

Watching: Season 2 of The Magicians and Season 2 of Colony and I am re-watching Buffy on Netflix because Why Not?

Cooking: Mostly cookies and stir-fry noodles and brewing endless cups of fancy loose-leaf tea.

45 and Still Alive

So, it's been a month since my last day of work already!  Where does the time go?  I turned 45 on February 17th and it was a really wonderful birthday.  I am surrounded by people I love.  I can walk (not for a super long time, but long enough), drive, and keep food down (so long as I am not foolish!) Life is never perfect, but I am so, so grateful right now.

I am doing well, I think.  I had a cortisone shot in my crazy bad leg on Tuesday and now that the soreness has (finally! after 3 days of ice packs!) gone away I see some improvement in my range of motion.  I also had my IV Benlysta on Tuesday along with my shot.  No changes to my medication.  Still on Prednisone, but hoping to see the dosage continue to drop...

Not waking up at 3 a.m. anymore has helped me tremendously.  I feel almost-normal.

I am happy.

I am reading lots of books. I am writing again, albeit kind of slowwwwwwwly.  That's okay though.

I am cooking again, too.  I baked some snickerdoodles for my mom.  Of course there are fancy soups in the works and maybe a fabulous chocolate cake?  Who knows?

Aaaaaand I just dumped a glass of ice water on my poetry notebook, because some things never change! Off to dry my pages!!

Sick life, quitting, and starting over

Every February I am sick, sick, sick.  Meh.

In addition to this crap cold my immune system (pissed off by this virus, I'm sure) is in overdrive and my joints are swollen and the roof of my mouth is covered with sores so I feel like garbage.

Soooooo, at least I don't have to drag myself to work because I QUIT MY JOB, YO.

My body couldn't take it anymore.

It's not worth getting up in the middle of the night to start work at 4 or 5 a.m. limping and barfing and suffering from headaches and blurred vision and all that business.  I realize I'm very lucky to be in a position to take some time off and get healthier.  I plan to work on a couple of book projects while also doing everything I can to get as well as possible.  I used to freelance before it became necessary to take a retail job for the reliable income and I'm hoping to get back to that, if I can.

My last day was a week ago.  I thought I might be sad but I am not sad at all just so, so relieved to be able to slow down a little.  My first week at home wasn't very productive.  My last couple of days of work were really, really rough with huge problems and extra work due to a number or issues with staffing problems and untrained people messing around with stuff they shouldn't touch.  I was stuck there for 11 hours (I was supposed to be working short shifts) and this kind of thing was becoming a pattern.  NOT OKAY.

I couldn't walk for two days after that because my leg was so swollen and painful.  This was followed by the sores and fevers/chills.  After that, I got slammed with this monster cold.  It is an endless cycle of pushing myself and collapsing.  Hopefully, that's going to change.

My main goals are to get healthier, spend more time with my mom and dad, and to write.

For all my frustrations, I am doing better.  Two years ago, Lupus attacked my heart and I was in the hospital where I contracted multiple infections, getting sicker and sicker.  I developed fevers so high they reached 105 and my body would go into uncontrollable spasms.  It was horrible.

So this cold and minor flare?  Kid stuff.

Looking forward to better days!