I will be honest. I'm having a tough day today.

It isn't just the pain, though that's there. It isn't just the collection of "other" symptoms, though those are there too. (Seriously, where do these fevers come from?!) It isn't just the lag from yesterday's 4-hour-both-way rides to see my geneticist, though that's definitely there. It's just... all of it. All of it and the mental checklist and morass of file folders for undone tasks that's taking over my life and never seems to get any smaller. I have to do ______ for disability process, I have to do ____ and _____ so I can continue to receive basic medical care, and oh yeah, I have to evaluate whether I'm just not trying hard enough and that's why I'm gaining weight that I can't lose and why I'm taking money at exorbitant rates from my dad who totally deserves better and why I've doomed my husband to a life of "in sickness" with no "in health" and why I quit school and work and maybe I'm just not really trying, you know, to make the most of my days at home? Maybe I really am just lazy, and being sick is a convenient excuse to give up altogether? Maybe I'm not really that sick and I'm tricking myself into feeling more ill than I am?

I think anyone with a serious chronic illness will ask these questions of themselves at some point, especially if they've given up anything significant because of it, and especially if they're still young. I'm just having a hard time with staring down the years and wondering if I'm going to continue to decline or not. I'm doing my best not to, I really am. Sometimes, especially when you don't see any improvement, it's hard to keep at it, to take the meds, to swallow the vitamins, to do the physical therapy, to eat healthy, to look on the bright side. I'm just tired. I'm so tired, you know?

Anyway, the trip to Tucson yesterday was to see my geneticist, the one who actually diagnosed me with EDS. She had gone to a conference last month, and I was eager to hear if she had any insights for me that were new, and eager to discuss some research that I'd been doing into various co-morbid diseases and syndromes and possible other diseases that could be aggravating the EDS. (For anyone who is new and doesn't know what EDS or Ehlers-Danlos Syndrome is, the Ehlers-Danlos society has a nice, concise run-down of the various "types" found in the syndrome family. I fall very neatly into the Hypermobile type of EDS.) Unfortunately, there are no miracle cures as of yet, but she did have some interesting observations on preventative care.

The conversation we had was wonderful-- I enjoy a good discussion peppered with medical terms :)-- and I came away with a clearer understanding of what symptoms lie in the domain of the EDS, what symptoms come with comorbid diseases or syndromes, and what symptoms are the completely unusual outliers that I can focus on in a bid to find more answers about what's broken inside of me. I have a few interesting leads, but I don't really want to discuss them yet, not without further research. Something I am going to try out is kenesio tape, which I'm not really familiar with but she says is great for EDS because it supports the joints and provides compression to aid with blood flow. I've heard of it before, but not really looked into it because I'm allergic to adhesives, but I think I can make it work anyway, maybe with something like "vet tape" that doesn't have any glue. The idea is to be more proactive with splints and braces, to avoid injury before it happens instead of treating it afterward, and that's a new approach for me. I guess I hadn't really accepted my diagnosis yet, kind of hoping that it was all a big mistake or something... but if I'm being proactive about it, then that means that I accept that it's a thing, and that makes it real. It's not like I haven't done that before, but the funny thing about "chronic" is that it drags on through years and years and you have to face things more than once. I've read that chronic illness is cyclical, and I believe that the acceptance is cyclical too. Or maybe it's just a process. Either way, it just feels big and scary and I don't wanna! But on the other hand, if it can make me feel even a bit better, it's totally worth it, cause that means that I can apply that energy that was tied up in feeling crappy and making myself power through so much unpleasantness and I can use it for something productive, even if it's just having a friend over for tea.

Well, whatever. All I can do is keep trying, right? Plodding forward, one millimeter at a time, that's me. Maybe this plodding will lead me forward into a better place. I can only hope so.
I watched an anime with Corey last night that really tore me up. There's a stray cat that "adopts" one of the main characters and it's black and lovey and adorable little kitten thing, and through the few episodes it shows up you watch how it just adores this girl and she adores it and they're so happy together… and then it gets hit by a car, but it doesn't die right away. She finds it and it dies in her arms and she (and I) both basically lose it.

I thought I was over the loss of Bob and Cortes, but this silly cartoon brought back all of the grief as if it were totally fresh, and I have been mourning so HARD since then. One thing leads to another and I find myself grieving all the losses of my life at once, and I am paralyzed.

The really, really hard part is that if I had done just one thing differently, both might still be alive. With Cortes, I saw the puddle of antifreeze that had leaked out of Corey's truck before Cortes ever got to it, and I knew that I should sprinkle kitty litter over it to absorb the antifreeze so one of the cats wouldn't get hurt, but… I wasn't feeling well, and I was in pain, so I decided to leave it for later. I had the front door open to let in the lovely spring air, and that's how I saw Cortes lift his little face up and lick his mouth when he had lapped up most of that puddle of antifreeze. I didn't see him soon enough to stop him, but I had seen the puddle maybe an hour earlier and had chosen not to do anything about it, and he died because of my selfishness.

Then there's Bob Cat. He and I both grieved terribly for Cortes, he especially since they were litter mates and had never been separated. Bob had never been alone without his best friend before, and he would walk the house, crying for his brother. It was very distressing for both of us. He eventually got over it a little, as did I, but he didn't perk up entirely. I thought maybe he was still depressed, but he got a respiratory infection type thing and it lingered on for a few weeks. I took him to the vet to find out what was wrong, and it was discovered that Bob had feline leukemia, something he had probably contracted from some other cat in our neighborhood. I could have had him vaccinated, but I had chosen not to because we were struggling to pay for my medical bills already, and we didn't want to add vet bills on top of that. It's not an expensive vaccination, but I thought that I could gamble and win and thereby save money for my medical problems. My decision cost Bob his life. Both of the brothers lost, out of the blue. No warning. (Now I'm very paranoid whenever any of the cats seems to be looking a little run down or displays any kind of health problem.)

I miss my little babies. I raised them from newborns! They were my furry children and I miss them so much, and I hate myself so much for being so selfish that they died before they could even become full grown. My anger and my grief over my lovely babies of course brings up all of the feelings of loss and anger I've had to deal with over the past 5 years, and I feel like it's too much. I just want to lay down and not wake back up. I'm so tired, and I hurt so much.

I have been comforting myself with the knowledge that, had Bob and Cortes not died, I would never have gotten to experience the love and silly quirks of Fancy and Vladimir, both of whom I love deeply. They make me laugh often, and along with Juneaux I am often overwhelmed with their love and loyalty to me. I'm just afraid that I'm going to make a wrong choice somewhere along the line and lose one of them as well. Or worse, one of my people.

I'm just hurting. Hurting and worn down and tired and depressed and really, really frustrated all of the time. I feel like calling myself "princess warrior" is a stupid joke. There's nothing I'm dealing with that I can actually fight or change. I just try not to think about all of the crappyness, distracting myself with books or movies and such, but sometimes a memory or a feeling gets triggered and you just can't help yourself. Writing all this out makes me feel better, actually, along with the irrepressible and all consuming sobs and wailing.

I have some stuff for the weekend I need to get done. Hopefully it'll help distract me a bit, and I'll probably end up blasting some music that always makes me feel better while I work. Either that or I'll nap for a bit, THEN blast the music and work. I'd rather curl into a ball and just fade away, but I've already made promises, so… trudge on, I shall.
You remember yesterday/last night/actually early this morning, when I was musing about how I want to leave a mark in the world, to do something important and worthy with my life? The gist was that I couldn't really fully put into words what I was longing for, but I've found it! I found the words to explain my mission! Whenever I read the Hands Free Mama blog, it's perfect timing for something, either a struggle I'm going through or a thought or philosophy taking shape that needed a little guidance and a shove in the final direction. This time, I came across this article called Your Most Important Role, In Case Someone Forgets, and I'll go ahead and copy the sections that jumped out at me the loudest.

I ended up taking that two-hour drive with Scott. I can’t even remember if he got the job; I only remember the look of gratitude on his face when he dropped me off, saying he would have been way more nervous if he’d gone alone. All I’d done was simply remind him of what he already knew—the good stuff we tend to forget about ourselves in times of doubt, stress, uncertainty, and fear.
Over the past two decades, I’ve referred to that experience many times: As a special education teacher looking into the eyes of a young man who killed his pet … as a mother whose Noticer of Life child admitted she felt “different” from the rest … as a confidant whose friend confessed dark truths she thought made her unworthy of happiness and true love.
“You might not be able to see it right now, but you hold great value,” I’d said to all of these precious people. “I see your value. And I am here to remind you when you forget.”
I have a dear friend who has written a literary masterpiece coming out in April that “illuminates one highly dysfunctional family’s tentative, desperate crawl toward a life of meaning and worth.” My friend says it happened largely because I believed in her. What Katrina doesn’t understand is that I had no choice. Her gift was so obvious and so needed in this hurting world I simply could not let her give up.
While working on the manuscript for my third book a few weeks ago, I needed grammar assistance. I knew exactly who to go to for help.
“Thank you, literary genius,” I texted Katrina after she provided exactly what I needed.
“You’re welcome, soul changer,” she wrote back.
I began to cry.
Out of all the things I could be in this world, I couldn’t think of anything better than that.

Soul changer
I never had to ask my friend what she meant by the term.
I knew exactly what it meant because of the experiences I had with my husband, my former student, and my child.
It means seeing someone’s inner light when he cannot see it for himself. It means putting your hands protectively around her light through upheavals and uncertainties so the precious light doesn’t diminish. It means reminding people of the beautiful things they know, but tend to forget, about themselves.
And I don’t do it for others due to noble reasons; I do it because it is what I hope someone will do for me. And because certain people in my life have done it for me.
One night Avery was playing her guitar and singing her heart out. Suddenly, I remembered an uplifting video I wanted to show her. As a self-professed “fan of adorable old people,” I knew Avery would enjoy seeing this video showing the impact of familiar songs on despondent seniors in a retirement home. The video was so touching and so personal, the newscaster lost his composure at the end of the segment.
After seeing the way the guitar-playing music therapist brought foot taping and hand clapping to the nearly lifeless seniors who began to sing along, Avery jumped up with excitement. “Music therapist? I never knew there was such a thing! I could do that, Mama! I want to do that!”
“There is very strong connection between music and memories,” I repeated from the news clip. “Just imagine. You could transport elderly people back to a beautiful time in their lives. You could help them remember their best memories and remind them of who they are.”

Soul changer
It suddenly occurred to me that we all have instruments in which we can change people’s souls. Some instruments are more obvious than others, but we all have them. Sadly, some people may never even know they’ve changed someone’s soul.

Soul changers
Thank goodness, they are all around us. Thank goodness, they are within us.
My friends, what an important role each of you play in this often-hurting world. You have the power and the instrument to help someone remember these critical truths: You are worthy. You hold value. You are not alone. 
Perhaps you do it with strong hugs or comfort food delivered right to their doors.
Perhaps you do it with a make-up brush and healing hands.
Perhaps you do it with long drives, quiet presence, or faithful prayers.
Maybe it is your green thumb or the tender way you wipe tears.
Maybe it’s the way you remember people’s names and say them with love.
Maybe it’s the way you bring humor to heavy situations or drop everything when needed.
Maybe it’s the way you always know when to pick up the phone or send a hand-written card.
Soul changers
Sometimes all we need to believe in ourselves is one person to remind us of what we already know.
And like a familiar tune from long ago, just a few notes is all we need to start tapping our toes and singing the lyrics we never forgot. And low and behold, we find it’s just the anthem we need to carry on.

That, my dear friends, is what I want to be. That is the essence of what I found myself longing for after hearing Rachel Scott's story, after watching The Mission for the first time and every time after when I listened to the soundtrack with my eyes closed. That's the quintessential Mark Maker that I want to be, the one people remember as the changer and caretaker of souls. Even just one.

I know that I truly loved my work with The Healing Journey, even though it brought up a lot of difficult things for me in the dark of night, and I know that I would have thrown my whole self into my massage therapy, had I been able to complete the training. I continually gravitate toward these professions of healing and helping, because that's who I am. That's what I wanna be. Now that my body is in a state of constant rebellion I can't accomplish the goals I once had for myself, but the delicious thing is that I can be a soul changer and a caretaker of hearts even from the depths of my own pain and from the cushions of my couch. It doesn't seem like such an unattainable goal after all, framed in this kind of concept. The very very best part? I know that I've already met this goal many times over, but each time will be beautiful all over again. Also, when you invest in the people around you, they tend to turn around and take care of you right back, which I've experienced much of. Now that I'm more dependent than ever, I have a lot of good people who have my back. Give and receive, ebb and flow.

Suddenly the next 28 years don't seem so much of a burden anymore.
Tomorrow is my birthday. Tuesday, that is. I know it's technically Monday right now where I'm at, but I've been awake for a few hours after another few hours sleeping, only a short nap, so it still feels like Sunday to me. Ah, who am I kidding? The days don't "feel" like anything to me anymore. I don't have a regular enough sleep/wake cycle for that. It's all one long day, punctuated by naps long or short.

On Tuesday I turn 28. I can't help but take stock, think about the passage of time and how much I may or may not have left. When I was in high school (during one of my several sophomore/junior years) I attended a prayer breakfast where the keynote speaker was the father of Rachel Joy Scott, the first student to die in the Columbine shootings. His story of Rachel's life touched me deeply, and it also lit a fire inside me that I've never really been able to explain. You see, she had this purpose and direction to her life that makes me ache for something similar, and even though she died quite young, she still left an indelible mark on the world around her with her kindness, her inclusiveness, and her determination to make the little universe she inhabited a better place. The best part is that she did. She knew somehow that she was going to die young, that year that she was shot. She wrote in her journal some time previous that "this is my last year on earth, I have learned what I can" or something to that effect. (I'm going off of a ten year old memory, so it's not exact.) And now that I'm facing the accomplishment of year number 28, it astonishes me because I always felt that I was going to die young, too. I never really expected to reach thirty. I suppose it's because I've spent so much of my life focused on immediate survival, which was the only way to make it through the trauma of the first decade and a half, but the dreams of the future always seemed unreal and hazy, not concrete at all.

When I look back, though, I am very happy with what I've accomplished, particularly knowing now that I was fighting against Ehlers-Danlos the whole time, and some of the other stuff like adrenal fatigue and food allergies as I got into my teens. I've had some grand adventures in my time. I feel particularly fond of my Idaho adventures. They were the ones most closely aligned with my most closely held daydreams of adult life. Have I ever mentioned that one of my most passionate wishes as a girl was to grow up and join an Amish community? The rustic, living off of the land "survival" lifestyle holds a deep, deep appeal for me, and living on the premises of Summer Hill Farm away up in the mountains was a dream come true in a lot of ways. I only wish that I could have stayed longer, or gone up there sooner. The timing worked out, though, to be for the best. I could not live up to the rigors of country life in my current state of disability, so it's best that I moved back to a soft city life before it got too bad! ;-)

I do feel a sorrow, though, for the life that I will not get to live. Chronic illness and intractable pain have changed my life irrevocably, and there is a deep sadness that comes with that certainty. Granted, I'm the most comfortable that I've been in years, now that I have the proper balance and dosage of pain medications, but the thought of years and years of this is… daunting. To say the least. I feel like I'm constantly dancing on the edge of a chasm, and if just one little thing goes wrong anywhere in the chain of events, I will topple over the edge and be broken on the jagged rocks below. If something happens to  the manufacturing or delivery of the pain medication, I'm doomed. If the pharmacy has troubles with stocking (like they have the past 6 months), I have nowhere to turn. I tried getting my meds filled at a different pharmacy, but they all turned me away because my needs were too great. If I can't get the hundreds of dollars necessary each month to buy the meds… I'm toast. So it's not just the thought of the huge drifts of pain that will accumulate through the years, but the stress of not knowing, each and every month, until I'm rolling out the pharmacy door with meds in hand, that seems the most unbearable. It's a really doomy, gloomy thought, so I try to not think about it much. Sorrow? Check. Stress? Double check. Moving on.

I read a really interesting sci-fi book a few days ago called "Factoring Humanity" by Robert J. Sawyer. I don't wanna give away spoilers, but one of the premises of the book is that humanity isn't a bunch of individuals on a spinning rock, totally unconnected from each other, neither is the information gathered over a lifetime lost when an individual dies. Rather, humanity is all connected to one another through what the book terms the "over mind", a collection of the consciousness and information of every human mind that has ever existed. The information isn't lost at death, but rather "uploaded" and saved, like backing up your computer data, and the book goes over the story of how the over mind is realized and explored by a few humans at first, using the information sent to Earth by intelligent life on Alpha Centauri over a period of ten years via radio signals. I know it's just a fictional book, but it really does give me a framework for understanding the world around me that really appeals to me and just makes a lot of sense in some ways. It's given me much to think about, in any event.

That brings me back to the idea of "making a mark" on the world around me, though. Discount the idea of the over mind and just focus in on the thought that when a person dies a shadow of them lives on in a way through the memories of the people they interacted with. I would really like to be able to say that my interactions with the people around me left them happy and better able to cope with the harsh realities of life, you know? Because life is hard. Really hard. Anyone who says differently is selling something. Hehehehe. (Princess Bride reference, in case you didn't catch that.) We all know at least one person who is definitely not a delight to be around, and who seems to just make everything a bit harder to bear; someone who sucks the energy and life from those around them and either doesn't know or doesn't care. I don't want to be that person. Even if I have excuses that seem valid, I do NOT want to be that person. My young life was ruled by a tyrant of that sort, and I know how miserable it can be under their thumb. I absolutely refuse to do that to anyone else if I can help it. I think I've done a pretty decent job of avoiding that pitfall, even with my new neediness that came with the nosedive of my health. Perhaps my "mark" is simply that I made some people happy some of the time, made their lives a bit easier, even? I mean, in a first world world, what else is there?

So I'm turning 28. My husband will be 30 next month. I remember the days when 30 seemed so old! My girlfriend is even older than my husband, if you can believe that. Age never really mattered much to me as much as personal maturity, although I do tend to have a thing for older men. Daddy issues, most likely. I'll own that. lol. So I guess that's it. Just some musings on my life and what I hope I'm doing with it. At this point I don't feel like there's much I can achieve anymore beyond interpersonal goals. I'm just too damn tired. Somehow, I have to make peace with my multitude of dreams and my achy, sleepy reality. I have been doing "better" the past couple months, though. I'm starting to feel like myself again, really and truly. An altered version, no doubt, but no one stays a static version of themselves forever anyway. I'd be altered no matter what.

I've started going for walks again, though, and I get out of the house twice a week regularly, once for grocery run with Corey and once for coffee date with Saka. I've even stopped throwing up all the time, thanks to a lovely med they give chemo patients! I have to take it consistently, though, or else the nausea sneaks up on me really fast and I find myself on the couch clutching my vomit bowl within a span of ten minutes from feeling fine. Gotta keep it in my system. I can't help but laugh sometimes at how different my every day life is from what I'd ever imagined it being!
No artsy cafes or guitar in the park, no challenging classes out at the college with a yoga session afterwards.
No five mile walks in the muggy warmth of a summer's night.
No swell of a pregnant belly.
No certificates of continuing education, no job, no paycheck.
No numbers in my savings account.
No trip to Europe, touring art and culture and food.

There are losses, to be sure. I gotta quit that or I'll start crying. But hey, everyone has losses, and everyone has gains, too. I know I'm better off than I was a year ago, and for that I'm very thankful. Here's to another year of, um… tea and Netflix! Yeah! And a circle of good people who love me very much. That's always a good one.
Yeah, I know, I've been quite absent of late. That's partially because I don't want to wind up saying the same things over and over again, which would probably happen, and partially because I just don't have the gumption for much besides waking up, moving to couch, occasionally getting up for pain meds or bathroom or whatever food I can handle that day, managing liquids, and returning to the horizontal position.

I've started doing this thing where I'm working with a coach to try to make money from home, working online, like a go-at-your-own-pace class type thing. Selling stuff on eBay, that's what I'm working on right now. It's hard, though, really hard, when the word "energy" is a dim memory of a time gone by, and nausea stalks the streets, seeking whom it may devour. Hint: it's me. I have to force myself to sit up and try to focus and learn, and many days it just doesn't happen.

I've basically spun down into a crumpled mass of "I can't fucking DO this anymore!" and I refuse to budge. Symptoms have flared up and recruited other symptoms that I hadn't become acquainted with yet. I started doing some more research on EDS this week, but I stopped after a day or two because it's too dismal of a prospect, knowing what I'm in for. It did help me to get some ideas as to what this chronic nausea and vomiting problem might be related to, though. I'm throwing up all the time, and when I'm not throwing up I'm either so nauseous that I can't stand up or sit up or my stomach is threatening to toss the cookies. Sometimes I have a day where I'm alright, but they're getting fewer and farther between.

Don't get me wrong, there are some good things happening too. It's not all crappy. My sister sent me a pastel rainbow colored alpaca stuffed animal for Christmas, whom I have named "AlpaCapone", and he goes almost everywhere with me. My cats are a delight, generally as a rule, and my husband continues to be the thing that keeps my heart going. I have a friend that has come to mean the world to me, and she's been a breath of fresh air, being there when I don't have the energy to reach out. I've stopped interacting on social media, for the most part, because I just don't have the energy to reach out, and I don't feel like I have much to share at the moment, at least nothing that people need.
~Alpacapone in his gangster hat~

Sorry this is brief. My brain is just not wanting to flip on the "eloquent" switch, plus I'm typing away as the husband tries to sleep next to me, so I figure I should wrap things up. It's not that I want to be a downer or have a huge pity party, it's just that this is where I am right now. I found this website called themighty.com and I'm excited about it. There's a particular story I read on there the other day that was just what I needed--just read the comments where I say so!--and it helped to pull me out of my huge depressive funk by realizing that it's okay to fall down and fall apart sometimes. I'm really discouraged with the fact that I have a rare, incurable, systemic, degenerative set of diseases that makes my every waking moment a misery and will only continue to worsen as time passes. I don't know what to do with the enormity of that fact, and I don't know how I feel about it except for "angry". I'm trying to figure that out, trying to learn how to live with this. Anyway, here is the story I read that helped give me some peace: "To the Person With Chronic Illness Who Feels Like You’re Falling Behind". Fyi, the girl who wrote this also has Ehlers-Danlos Syndrome, so I know she gets it. So, yeah. That's it for me for now. I need to take some pain medication and try to sleep so I can maybe accomplish something tomorrow. I'll be back soon to vent, I promise. I need it. The words are starting to choke me from the inside.