ME And Invisible Illness Day: May 12th

May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see.  If someone has the measles or is in a wheelchair, you can tell that just by looking at them.  Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, Multiple Sclerosis, mental health problems, Complex Regional Pain Syndrome, Celiac Disease, Ehlers Danlos Syndrome, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses.  Mental health problems fall under this umbrella, as well, and often go hand-in-hand with physical ailments such as anxiety, depression, PTSD, bipolar disorder and many others.  This is by no means a comprehensive list, just a few examples.

Crack of Doom, © Sarah Allegra.  A detailed shot from my latest ME-related self portrait.  Scroll down to see the entire image!

 

According to Wikipedia and the 2002 US Census Bureau, 96 percent of chronic illnesses are invisible.  This adds in an enormous extra challenge in obtaining proper medical care and treatment, as well as being misunderstood by the population in general.  If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?

That’s why May 12th is so important.  We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to.  Awareness is the critical first step in any change happening.

Why is it so important that we treat ME?  What makes our disease so special?

The Blue Ribbon, © Sarah Allegra.  Model: Katie Johnson.  An underwater image I shot to use our blue awareness ribbon theme as much as I could!

It can be fatal.  People die from this.  If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily pain and torment.  The rate of suicide among people with ME is not known exactly, partly due to the stigma surrounding suicide and the lack of accurate diagnoses, but it is estimated to be anywhere from 26 to 53 percent in the US.  The average suicide rate in the US holds pretty steady for the general population at around 11 percent.

No one should have to live like this.  As someone who has what is considered only a “moderate” case of ME, I can tell you it’s a living hell.  The pain is nearly constant, sometimes to the point where I am in tears and desperately wishing to die.  I have migraines more days than I don’t.  It takes away all the plans you had for a normal, fulfilling life.  Careers, hobbies and passions are snatched away from you.  You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything.  Brain fog is a condition similar to when you have a fever and can’t concentrate or think clearly.  Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language.  Most days it’s more like mentally wading through a bog — or the Swamp of Sadness — at least for me.  Because our immune system is busy fighting itself, we live with very little functioning immunity.  If a cold, flu or other illness comes along, we will almost certainly get it.  This often means that if I do manage to actually see other living people, I can pick up a bug while I’m there and am “double sick” for a period after.

A Thousand Battles, A Thousand Victories, © Sarah Allegra.  A Viking-inspired self portrait in defiance of the horror ME has brought into my life.

Chronic illness almost never strikes alone.  Other physical health issues like blood pressure and weight problems occur far more often than not.  Mental health deteriorates rapidly in the face of unending pain and suffering, especially when compounded by doctors and a society which dismisses you and your problems.  Remember how we talked about the high rates of suicide among those with ME?  This is a big part of the problem.

We deserve to live happy, fulfilling lives, just like everyone else.  When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself.  And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before (although one of the harshest ironies of ME is that while you’re exhausted all the time, you frequently have insomnia and whatever sleep you do get feels completely unrefreshing).  I sleep for 11 to 12 hours every night and I still wake up feeling more tired than when I went to bed.  On a good day for me, it’s like how other people when they have the flu.  A constant, crushing weight that makes the slightest exertion a Herculean effort.  On bad days, all I can do is lay in bed and drag myself to the bathroom periodically.  Sometimes even feeding myself is a challenge.  I might have to choose between feeding my animals or myself, because I don’t have the energy for both.  And of course the animals always win; they’re my responsibility.

I am mostly house-bound and I require help with the sorts of tasks I used to take for granted.  Forgot something at the store?  No problem, just go back tomorrow!  Nope, not with ME.  Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it.  If it’s something at night, someplace noisy or an extra stimulating activity, I must plan on two to three days recuperation at least.  (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.)  When I do gather my strength to photograph models, that is my exertion for at least the entire week.

Living With The Tombstones, © Sarah Allegra.  Model: Katie Johnson.  An image about how invisible we are, society’s projections upon us and how close to death we feel.

ME is extremely isolating.  You can’t just go hang out with friends.  You can rarely make it to family functions.  A few years ago, I had to miss a surprise birthday party thrown for my own mother, something which still upsets me still today.  I was just too exhausted to go and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.  (Thankfully, she is very understanding since she has a milder form of ME, herself.  But still, ME took my mom’s birthday party away from me.)  Chronic fevers and sore throats are a new normal for me.  How are you supposed to plan for lunch with a friend when you know that at least half your week is going to be spend feverish, in bed, fitfully sleeping, unable to do anything at all, but you don’t know which days it will flare up?  How am I even supposed to make it to doctor’s appointments like that?

The effects of loneliness are still being studied, but it’s being taken more and more seriously by the medical community.  Some argue that it’s as lethal as smoking 15 packs of cigarettes per day.  That’s a looooooot of cigarettes.

The grief is unending.  You grieve for the normal life you once had.  You grieve the hopes and plans you made which now are out of the question.  You grieve the relationships that wither as you’re unable to tend to them.  You grieve making the simplest plan, like taking a shower today, and finding that, no, you don’t feel well enough for that after all.  Every time you think you’ve reached the end of what ME can take away from you, it finds something new to rob you of.  Its cruelty never seems to have an end.

ME is vengeful god.  If you violate any of its insane decrees, you WILL be punished.  Probably for a long time; sometimes forever.  There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it.  For the rest of their lives.  At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off, too.  Damned if you do, damned if you don’t.

Silenced, © Sarah Allegra.  Model: Travis Weinand.  Inspired by the doctors who don’t take us seriously and everyone who thinks we can’t have anything wrong with us because we “don’t look sick.”

We are massively underfunded.  Right now ME received approximately $5 million a year in funding from the United States government.  To put that in perspective, that’s about the same amount given to researching hayfever.  Male pattern baldness gets FOUR times as much.  HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets 600 times that amount.  I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should!  I’m saying that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.

Out of all the doctors I’ve seen (more than a dozen), only ONE had even heard of ME before I was their patient.  This is not okay.  Doctors are not well educated about ME; if they miss one day of class, they may miss out on it entirely.  Given its seriousness and how many people it affects, this should be something every single doctor learns about.  It’s estimated that 15 to 30 MILLION people around the world have ME, with 80 to 90 percent of those cases being undiagnosed.  Since the majority, 75 to 85 percent, of the cases affect women, it’s taken far less seriously.  I personally know a woman who had been diagnosed with “conversion disorder” (that’s what they call female hysteria today) and I myself have been told by a previous GP that I was simply “anxious and depressed.”  The irony was that I was currently on anxiety medications and antidepressants, so if that really was my issue, then clearly the meds were not working well enough.  But that doctor didn’t care anymore, she just wanted to get me out of her office and to stop bothering her with my irritatingly persistent issues.  Thankfully, both my “hysterical” friend and I KNEW that we had things physically wrong with us.  If we had given in to those diagnoses, we could have easily killed ourselves by pushing ourselves too hard, as our doctors wanted us to do, by having our hearts fail, catching something our frail bodies could not fight off, getting so brain-fogged that we walked into traffic or any number of terminal scenarios.

Shades of Dreams, © Sarah Allegra.  A self portrait about brain fog and living with ME.

I had a number of different images planned for this May 12th, but I’ve also been dealing with possibly the worst ME flare I’ve had since I first came down with it 13 years ago.  Since the middle of March, I have spent at least half of each week (often more) with a fever, a horribly sore throat and other cold/flu symptoms that make anything not absolutely essential fall by the wayside.  At one point, I had only one clean shirt left because I’d worn all my clothing and hadn’t had any energy to do more laundry.  Each time I planned an image, I would realize after more and more days of being stuck in bed and feverish that I no longer had time to complete the photo I wanted and came up with a new idea.  Then that new idea became too big to take on, so I came up with another idea.  And on it went until we got to the point where we are now.  But I wasn’t going to let May 12th pass without adding something new to my Enchanted Sleep series on living with ME.  Thank you to Geoff for his generous help in getting it done at all!

I want you: you, who are reading this right now, to #GoBlue4ME!  Why blue?  Because that’s our disease’s awareness ribbon color.  What does “going blue” mean?  There are any number of things you could do to go blue.  I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!).  You are more than welcome to download them and use them however you’d like!  You could dress all in blue and post a photo or video of yourself with the #GoBlue4ME hashtag on any of your social media accounts.  You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too.  Take a photo of blue flowers!  Create a makeup look featuring blue, spray your hair with temporary blue coloring, pop on a blue wig; anything blue works!  Post it online and use the #GoBlue4ME hashtag!

For makeup artists, I’m issuing a special challenge. You can see in the self portrait I shot here that I used shades of blue for everything, even foundation!  You don’t have to get quite that extreme (although you get an extra gold star if you do!), but I challenge you to create your best, fiercest look featuring blue.  I know you can do this!

Shades of Dreams, © Sarah Allegra A self portrait about brain fog and living with myalgic encephalomyelitis.

And please, pass these around!  Share the links, videos and images with anyone and everyone!  We have to make a lot of noise to get the change we so desperately need.  You have my full permission to share far and wide!  If you take up the #GoBlue4ME challenge, let me know!  I’m very excited to see what you come up with!

One last note, your going blue does NOT need to happen on or before May 12th.  Keep doing it as long as you’d like to!  The longer we can keep the word spreading, the better.

Want more info?  Want to take action?  MEAction has you covered!  MeAction is a fantastic site where virtually every actionable step a person can take has been collected, along with reports on research, definitions and help available to sufferers.  Here is a great overview of the disease and statistics.

You can find info about the #MillionsMissing campaign and how you can join here!  This movement is named for the millions of people around the world who are affected by ME and missing from their jobs, their children’s lives, their own lives.  Read about the multitude of ways you can easily get involved and show your support!

Watch the excellent documentary Unrest created be Jennifer Brea, herself suffering with severe ME.  I adore this documentary as it not only covers our poorly understood disease but also has extremely engaging human subjects and documents the challenging relationship between Jen and her caretaker-husband which is reflective of the love lives so many of us have.  I got to help with the Kickstarter for the film, so I’ve been a fan of it for a long time!  It is available on Netflix, DVD, BluRay and many other streaming services.

 

Watch the informative documentary Forgotten Plague, created by Ryan Prior, a young man with ME, as he searches for answers and treatments and documents his own life and the lives of others with ME.  It is available on Amazon Prime, iTunes, DVD and BluRay.

 

Sign a petition!

Donate to MEAction to help them in their many quests!

Download these images and make them your profile photos for a day or more!

 

Thank you to absolutely everyone who has and will participate in this!  You are helping so many more people than you know.  I thank you from the deepest recesses of my heart.

And now… this year’s brand new May 12th image!

Crack of Doom, © Sarah Allegra.  A self portrait for my Enchanted Sleep series on living with ME.

This self portrait is drawing from the historic plague doctors and the iconic masks they would wear.  I recently finished re-reading a favorite book of mine, Doomesday Book by Connie Willis, part of which takes place during the bubonic plague of the middle ages.  No mask-wearing doctors appear in it, but the thought was fresh in my mind.  That combined with the current Covid-19 pandemic, the scarcity of masks, thinking about immune systems and how easily they can be gotten around by a determined germ… and this was the visual that came to mind.

Of course, a May 12th image wouldn’t be complete without it tying in to my experience with having ME.  This year, I asked myself, how could I explain what it feels like to have an incurable illness to someone who’s never experienced such a thing?  For once, a large portion of the world has actually had a small taste of ME, due to Covid-19.  The way Covid has forced you to stay inside, rarely see other people, isolate, protect yourself from any potential germs, taken away your livelihood, these are all hallmarks of nearly every chronic immune-compromised illness.  Except that for us, social distancing will never end.  Our isolation will never end.  We will never go back to work.  This is our reality for the rest of our lives.

This is not the life I want to live.  No one wants to live forced into a cage, denied the things that make life meaningful and enjoyable.  But still, this IS my life right now.  Until a cure can be found.  I’d gladly take even a treatment.  But the medical world has almost nothing to offer me or the millions and millions of others with ME.  I cannot break this cage; I cannot pick the lock and let myself out to freedom.  But I can scream inside it.  I can shout and bang on the bars until someone notices; until enough people notice.  And once they notice, they will start demanding freedom for us too.

And maybe, someday, I can actually leave this dirty, nasty, bug-infested prison and feel the sun on my face again before I die.

Shades of Blur, © Sarah Allegra.  A self portrait about brain fog and living with ME.

I would like to leave you with this last thought in these times of pandemic.  Covid-19 is a very serious and deadly threat and every possible action should be taken to heal those who have contracted it and to find a vaccine.  But we are able to focus on more than one thing at a time.  It’s entirely possible that many who have been afflicted by Covid will, with weakened immune systems, go on to develop ME or other health issues.  The Millions Missing may grow substantially.  But for those who have escaped its clutches and remain healthy, please… remember us.  Your lives may go back to normal.  You may go back to work, seeing your friends and enjoying life.  But our quarantine will never end.  Remember how frustrated you felt having to stay inside and not being able to do anything fun or meaningful?  That’s our life, forever.  If we can come together and work this quickly to devise testing, treatment and a vaccine for Covid-19, the same thing can be done for ME and other invisible illnesses.  Don’t forget about us when you get your life back.  We’re never getting ours back.

Image created by Original Art 4 ME: https://www.redbubble.com/people/originalart4me/shop

*[There are various theories and arguments about whether ME, CFS and fibromyalgia are all the same disease or different.  You’ll find as many disparate opinions as there are sufferers.  It is my personal belief that they’re probably all the same thing, or at least all very closely related.  Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with.  I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]

Tags: #GoBlue4ME #ME #MECFS #MyalgicE #maylgicencephalomyelitis #MillionsMissing #pwME #COVID-19 #Covid19 #Covid #Pandemic #InvisilbleIllness #InvisibleIllnessDay #May12 #May12th #OriginalArt4ME #MEActionNetwork #MEAction #Unrest #JenniferBrea #ForgottenPlague #RyanPrior #LeaveNoOneBehind #BlueRibbon #MEAwarness #MEAwarenessDay #ChronicIllness #ChronicPain #ChronicMigraines #Spoonie #Fibromyalgia #SEID #AutoimmuneDisease #SpoonieLife #ButYouDontLookSick #Anxiety #ChronicIllnessWarrior #ChronicFatigue #MentalHealth #Depression #MultipleSclerosis #ChronicallyIll #Pain #InvisibleDisability #Endometriosis #ChronicPainWarrior #EhlersDanlosSyndrome #Dysautonomia #InvisibleIllnessAwareness #Health #POTS #Autoimmune #Gastroparesis #MS #IBD #EDS #bhfyp #ChronicFatigueSyndrome #SpoonieWarrior #MentalHealthAwareness #Lupus #SpoonieSupport #IBS #PTSD #Awareness #MSWarrior #Love #Fatigue #ChronicIllnessAwareness #Spoonies #ZebraStrong #FibroWarrior #YouDontLookSick #SelfCare #Type #CrohnsDisease #EndoWarrior #UlcerativeColitis #EhlersDanlos #SpoonieProblems #Crohns #Bipolar #Fibro #Healing #MSAwareness #Help #Action #TakeAction #MakeChange #MakeNoise #WeAreEssential #Housebound #Bedbound

Dreams Of The Last Flight

I have a new self portrait for you along with a new post, though I am sadly overdue to tell you about the best, most wonderful recent development in my life: Lissar.   She deserves her own post, so I’ll save most of her story for that, but she is our new Silken Windhound, and she has done WONDERS to help heal my poor broken heart.  I can, it turns out, love again.  No one will ever replace Calantha, but I love Lissar wholeheartedly for who she is.  She is, as are all Silkens, absolutely stunning, and her coloring is almost the exact opposite of Calantha’s.  Cal was mostly white with some brown brindle patches and Lissar is red brindle with a white blaze and patches.  I’ll post just one picture of her for now.

I also feel that it would be weird if I didn’t address the current Covid 19 pandemic, but I’d also like to keep that a separate post.  So for now I’ll just say that I hope you are all safe, your families are safe, we’re all washing our hands a lot, practicing social distancing and protecting each other.  I know that having your life suddenly taken from you is shocking and takes a lot of adjustment, but you can get through this.  We will get through this.

As for my self portrait, some of you might remember another self portrait I shot quite a few years ago (and two homes ago) inspired by the same character, the great white hunting merrel from Robin McKinley’s Spindle’s End, a retelling of Sleeping Beauty, but with active female characters.  He is a smaller, but very important character, in a well-populated world equally full of animals and people.  Several of the main characters, including Rosie, the Sleeping Beauty, can talk to animals, making for delightful conversations that sound exactly like you’d imagine chatting with these animals would.

I’m going to let Robin McKinely tell us about the merrel in her own words, because I certainly can’t improve upon them!

“[Rosie] thought of the merrel stretching its wings, silently, in the dark peak of Lord Prendergast’s Great Hall; she thought of how carefully it moved among its cage of the rafters, so that the chain around its angle did not clink; so carefully that any of Lord Prendergast’s guests who did not know it was there would never look up to find it… She thought of the story of the huntsman told her, of how it had been wounded – they guessed – by a dagger of falling ice in the mountains… and how Lord Prendergast’s hunting party had found it, but that he had stopped them killing it.  Even with a broken wing and half dead of starvation no one liked to approach it.  The huntsman threw a net to tangle its feet, and Lord Pren himself had hooded it… and then had it bound and brought home, and its wing set.  But the wing had not healed as it should, and so it was was given the vaulted height of the Great Hall to live in, where no one dared trouble it, and it was fed by a falconer with a very long pole.

The merrel also knew its wing had not healed.  But I could reach a great height once more before it failed me, it said.  And from there I would fold my wings and plummet to the earth as if a hare or a fawn had caught my eye; but it would be myself I stooped toward.  It would be a good flight and a good death.  And so I shall eat their dead things cut up on a pole, dreaming of my last flight.

I have often felt a kinship to the merrel.  I can sympathize with an outside force coming along and stripping away your freedom, your dreams, your desires, your ability to move freely.  The forced isolation he’s put into, the seemingly pointless, yet unending life.  I suspect we all can to some degree more now than usual.  For most though, this time of quarantine and social distancing will end.  Outside of a miracle happening, for those of us with chronic illnesses, that is to be expected for the rest of our lives.  Remember us when life returns to normal.  There is a surprising amount I have in common with fictional, chained, broken-winged birds thanks to the chronic illness of ME.

I shot this, oh, a few years ago now, in an empty field in Kansas.  I had a crowd of cows watching from across the small road we were on, who seemed quite interested in observing my process!  Geoff helped be my human shutter release and the Kansas winds did lovely things to my wig and dress all on its own.  It was a cold, but easy shoot!  It only took me several years to get around to editing it.  🙂

That’s about the end of my energy for now, but I’ll leave you with some detailed shots along with the main one.  Enjoy!  I hope you’re all staying safe and keeping sane!

Dreams Of The Last Flight, © Sarah Allegra, a self portrait.

Dreams Of The Last Flight, © Sarah Allegra, detail.

Dreams Of The Last Flight, © Sarah Allegra, detail.

Dreams Of The Last Flight, © Sarah Allegra, detail.

And just for funsies, here’s the original image I used as the “base” to build everything on top of.  Ignore the mid-blink expression on my face, I swapped out my torso and head from another shot XD  Also ignore my bra strap which, as it likes to do, had fallen down without me noticing!

Roses For The Unicorn Dog

I’ve been putting off writing this as long as I can, but I can’t procrastinate any longer.

Calantha was put to sleep on June 18th.  My sweet, quiet, loving, dog-daughter, my dog-soulmate.  Her passing was extremely easy and peaceful for her, thanks to Lap of Love, who specializes in home euthanasias.  Easy for her, which was the most important things.  Geoff and I will never be the same.

They Lived To See The Dawn, A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

If this seems sudden, it was sudden for us too.  In May, I had another round of nerve-blocking injections when I started noticing that she was drinking more water than usual.  This was followed by a few accidents inside the house; something that she hadn’t done since was being house-trained as a puppy.  Alarmed, I sent Calantha to the vet with Geoff, where he Facetimed me inside the exam room since I was still in too much pain from my procedure to get out of bed.  After a lot of testing, we found out right after Memorial Day Weekend that she had kidney disease, which I’d suspected from her symptoms.

Her kidney values weren’t horribly high, but they were elevated, and I felt better after hearing what they were.  We changed her diet to a kidney-specific one, which she even liked at first; something pleasantly surprising from my girl who has always thought food was pretty optional.  We got into a schedule of putting her outside more frequently and around the clock which almost got rid of the accidents inside.  She seemed to be doing pretty well.

She’s about a year and half old here.

And then, it all fell apart.  She stopped eating the kidney food, her old food, and essentially all food.  She would occasionally eat McDonald’s hamburger or cheeseburger patties, with Geoff making runs over there every other day or so.  We went to the specialty, fancy-food pet story, the regular pet-food store and the grocery store, getting about one of every kind of wet food meant for dogs.  We bought her a rotisserie chicken.  We got her canned tuna, canned chicken, meat-flavored baby food.  I was spending 6-7 hours every day hand-feeding her from at least a dozen open containers of various food, people- and dog-food, and it was just barely keeping her alive.  She was on several nausea medications, which helped a little, but not enough for her to want to eat.  We tried an appetite stimulant, but it only made her ravenously hungry without making her actually want to consume anything.  She would come into the kitchen with me, stare at me with huge eyes, begging “Please, Mommy, I’m hungry,” but when I’d offer her the thing she’d asked for, she would sniff it, then sadly turn away.  It was absolutely horrible for everyone

She was suffering.  I knew the end was coming, much, much sooner than I’d expected from her initial kidney values had led me to believe.  One night, close to the time we put her to sleep, I found her laying on the couch.  I sat down next to her and said through my tears, “Calantha, I need to know what you want me to do.  Is it time?  Do you want to keep going?  I don’t want to call it too early, but I don’t want you to suffer either.”  And very, very clearly, I heard a voice in my head that said, “Please don’t let this get any worse for me.”  It did not sound like my voice.  It sounded and felt like hers.  I knew it was her.  So I called the at-home euthanasia vets and made an appointment with them.  It was the least I could do to honor her wishes after all the years of love she’d given me.  This was only six weeks from her original diagnosis.  Like I said, it happened fast.

I scheduled her appointment about three days from when I made the call to give us a little time to fully say goodbye to her.  We went on her favorite walk route every day.  I got what food down her that I could.  Geoff made countless trips to McDonalds and other fast food places to try and tempt her into eating.  I stopped the appetite stimulant since it was only making her feel ravenously hungry without actually making her eat.  That seemed to help her feel a little better those last few days, though of course not enough to call the appointment off.  We spent as much time with her as we could and made her as comfortable as possible.

She went out of her way to say goodbye to the dog-friends she saw on her walks.  One morning, we were starting to walk back up our driveway home when she stopped and wouldn’t go any further.  I looked around and saw one of her dog-friends across the street.  I looked at her and willed her to tell me what she wanted, and I felt that she wanted to say hello to her friend.  So we crossed the street and I let them greet each other.  When they were done, I started to bring her inside again, and, again, she stopped.  This time, two other dog friends of hers were walking up the street, coming our way.  We waited and she said hello to them as well.  There was one particular dog she’s always liked, a yellow lab named Bodhi, that we didn’t see any of her last days, but we saw all of her other close friends and she got to say goodbye to them.

No matter how much we didn’t want it to come, the day of her appointment arrived.  Unlike the last few days, she seemed agitated and didn’t settle down after her walk.  She kept asking to be let outside and went to the gate to bark, something she hadn’t done in days.  I was having a minor freakout, wondering if I was doing the wrong thing, if she was trying to tell me she didn’t want to go ahead with her appointment all of a sudden.  Then, I went to the gate to bring her inside so her barking wouldn’t annoy neighbors and I saw it.  Bodhi was being walked across the street.  She wanted to say goodbye to him.

I went inside and got my shoes and put on better clothes than the PJs I’d been wearing, but by that point, Bodhi was back at his house.  I didn’t care very much how much of a crazy dog lady I sounded like; Calantha had made her wishes known to me and I was going to to my damnedest to honor them.  So we walked down to his house, knocked on the door and I asked if Calantha could say hi to Bodhi, explaining that she’d seen him walk by and wouldn’t settle down after that.  They were very kind and indulgent and let us in.  I was trying very hard to keep myself from falling apart, but I finally got out that she wanted to say goodbye to Bodhi because this was her last day.  Bodhi’s parents are wonderful people, and not only immediately believed me, believed that this was Calantha’s wish and that I had interpreted her signs correctly, but were so kind and caring to me.  They threw their arms around me and hugged me tightly, not minding as I cried on them.  They empathized, pointing out the urn of their previous dog’s ashes on their fireplace mantle.  They were so gentle and loving to me in that precarious moment, I will forever be grateful to them.  Calantha seemed to be done saying her goodbyes to Bodhi, so we walked back home, while I tried to keep it together enough to just put one foot in front of the other.  When we got home, Calantha hopped up on the couch and settled right down.  No more going to the gate to bark, she was at peace and ready.  She had let me know what she’d wanted to do, and now that it was done, she dozed until the vet arrived.

Calantha with Byron as a baby

The vet was a wonderful woman, probably about my age if not a little younger, and the first thing I noticed was that she was wearing a The Last Unicorn baseball cap.  Since that’s such an important story to me and I’ve always called Calantha my Unicorn Dog, I knew it was a sign that we were doing the right thing, and that she was the right vet to do it.  She had also recently lost one of her own dogs to kidney failure and reassured us that we were making the right call at the right time for Calantha.  She had familiarized herself with Silken Windhounds and seemed to understand Calantha’s personality right away, speaking about how she was “a sensitive girl within a sensitive breed.”  She was absolutely wonderful and perfect.

I’d planned on having a couple readings during her ceremony, which started by allowing her to eat something she’s wanted her entire life: a whole can of cat food.  Cat food can very easily cause pancreatitis in dogs (she was on the verge on being hospitalized for it once after getting into some cat food) so even when I was desperate to get her to eat anything, that was still the one thing she wasn’t allowed.  But now it didn’t matter, so she got to eat a whole can and she loved it.  It had clearly been worth the wait.  Then she received her first injection, which was a sedative and pain killer combo.  It hit her pretty hard and fast, and we all helped her up onto her favorite spot on the couch.  While the drugs ran their course, we pet her and I read her two poems, She Walks in Beauty and Stanzas to Jesse by George Gorgon Lord Byron.  Her name is an indirect Byron reference (which I won’t get into here since this is already going to be long) and I felt like she’d come into the world with Byron, she should go out with him.  I managed to read them without having to pause to sob too often and by the time I was done, she was perfectly relaxed and out of all pain.  She looked so peaceful.

The vet let us take our time, and when we were ready, She gave Calantha the final injection.  She went very quickly and quietly.  I knew she had left her body before the vet confirmed it, listening to her heart, because I felt her nuzzle the back of my neck as she made her way into the afterlife.  I wanted to keep some locks of her beautiful, incredibly soft fur, so I took several clippings and the vet made a paw print for us.  We helped carry her body out of a stretcher to the vet’s car where she was carefully arranged and strapped in so nothing would harm her body.  We got her ashes back exactly four weeks later, which I arranged on my vanity along with all my other unicorn figurines and stuffed animals.  A fitting place for my Unicorn Dog.

She got a little wet running through sprinklers at this park, but clearly had such a great time that she didn’t mind.

Geoff and I wondered what sort of ceremony we could do that would help us feel closure over her death, and finally decided on walking her favorite route down the block and back with a bouquet of flowers, leaving a flower at each favorite spot that she’d stop to sniff, potty or otherwise engage with.  We ended up getting two bouquets since she had a lot of favorite spots; a dozen of the palest pink roses and what ended up being camomile flowers.  I also wanted to make sure I wasn’t scattering anything around that would be toxic to any cats or dogs who came across the sprigs, and those were both beautiful and safe.  It took about a week for me to work up the emotional strength, but we did our walk one morning and didn’t encounter anyone else.  The street was littered generously with roses and bunches of little white camomile flowers, which was comforting to see.  I went inside, but Geoff had to run over to the post office, so he walked back out to his car.  As he got to the end of the driveway, he saw one of our neighbors, the mom to one of Calantha’s dog friends, walking with another woman and they were pointing at the flowers and clearly discussing them.  Since Geoff was there, they asked if he happened to know who had placed the flowers around the street and why, so Geoff was able to let the women know it had been done for Calantha and that she had crossed over.  They were very sorry to hear that, but thought the flowers were a lovely tribute to her.  It was very nice for me to see them every time I’d leave the house.

It’s been very strange to not have Calantha here with me physically.  She is with me in spirit all the time, I feel her constantly.  Occasionally I get dream visitations from her that leave me with the most profound and unexplainable sense of peace.  I know she is alive and well and waiting for me.  I believe she will even come back as another dog for second round with us, as she told me in a dream, but that there will be a different dog that we have first, to share our love with another soul before she comes back.  That is comforting, but it doesn’t stop the frequent sobbing, the wondering of what the point of living without her is, the incredible trial of existing day after day after day without her physically by my side.  She has been with me for 14 years, since she was 10 weeks old.  Almost every major event of my adult life was with her by my side.  Her loss is devastating.  This has been a big challenge to my already existing clinical depression.  I don’t think I’d have made it if it wasn’t for the frequent signs she makes sure I see, the dream visits and the knowledge that she’s happy and at peace just on the other side of a door I can’t quite cross.  But I know she’s there, waiting for me.

As I tried to force myself back into a normal routine, I began working on an image of the lovely Aly Darling that I shot quite a while ago.  I wasn’t consciously aware of why I chose it, but the roses now remind me of the roses I left out for Calantha, so I suppose that probably is at least part of the reason.  It also feels very peaceful to me, with a gracefulness and beauty in Aly’s pose which reminds me of Calantha’s effortless beauty and grace.  It was a soothing image to work on, which is what my soul has needed.  It needed something lovely, graceful and easy to start with before I get back into heavy editing.  I’ve also had the raw images sitting on my computer for so long, I feel quite bad about it (sorry Aly!) and that was good for me too, to finally get it worked up.  Thank you, Aly, for your wonderful posing and for being a part of my healing process, even though neither of us knew this would be a part of it when this was shot.

The Soul of the Rose, model Aly Darling, © Sarah Allegra, sarahallegra.com

I took loose inspiration from a painting by the same title by John William Waterhouse, my favorite Pre-Raphealite painter (and also just favorite painter).  It’s not at all meant to be a replica, it just gave me a starting place with the general idea of the image, the pose, the mood, the tone.  I do believe his is still the stronger image, but he is a master painter and very famous, after all, so I don’t mind being second to him.  🙂

Part of the reason I wanted to post this (and also why I didn’t want to post this) was to share the extremely sad news about Calantha’s sudden passing.  How does one even live without a Calantha??  How does everyone else in the world who didn’t have a magical, unicorn dog do it every day?  I have no idea.  But I also wanted to share the less sad news that for the month of August (at least), all profits from any sales of any prints, any items from my Red Bubble shop, anything I sell at all, will be going towards a fund I’m raising to pay for a Calantha memorial tattoo.  It’s going to be beautiful, in the Art Nouveau style of Alphonse Mucha.  I think that’s the most fitting style for a portrait of her.  This is going to be part of my healing, to have her on my skin forever.  But tattoos aren’t cheap and her treatment was expensive (and worth every single cent), so I’ll be saving up for it.  If you’d like to contribute and get something pretty from it, help yourself to anything in my Red Bubble shop!  Or get a limited-edition, fine-art print made from the highest quality papers and inks  (if you don’t see the image you want listed, just ask me; it’s almost certainly available, it just takes to much time and money to list every single image I create on Etsy).  Or, if you’re feeling extra generous, you can just donate directly to my PayPal account here.  Please feel no obligation towards doing any of this, but if you would like to help this step of my personal healing process happen, I would certainly appreciate it!

This image will be the basis of my tattoo.  It sums Calantha up beautifully.

With my birthday coming up in slightly less than a week, I have never been less excited for one to come around.  A big part of me feels that there’s nothing to celebrate without Calantha here to share in it.  But I know she would want me to be happy, would want me to eat yummy vegan food and cake, and that she’ll be gently pawing me in spirit for tidbits.  I’m trying to be excited about it for her sake, but I’ll be honest, I cried a lot yesterday after putting in an order with the vegan cake-baker.  It’s going to be a hard one this year, but thankfully Geoff and my family are all very understanding and letting me take it all at my pace and not urging me to have more fun than I feel like I can endure right now.  It’s probably going to be a sucky day.  I’m going to ask Calantha for extra signs and dreams as a gift from her to me, as that’s all I can imagine wanting right now and maybe that will make me feel different.  Time will tell.

Thank you for reading this very long post, and thank you to everyone who has cared about and loved Calantha.  I do have one more image of her that I started, oh, a few years ago, but it’s MASSIVE, and it’s going to take a long time to finish.  I tried working on it for about half an hour one day, began sobbing and it took several days to pull myself out of the extra-deep depression just that threw me into, so it won’t be coming right away… but it will eventually.  It will be my last love letter written to her while she was alive in this world.  I have many other photos of her which would be used in future images, but I’m not ready to even think about that yet.  What I have on my plate right now is more than enough.  I’m taking it all one day at a time, sometimes one hour at a time or even five minutes at a time.  This will not heal quickly, no matter how many tattoos I get of her, how many images I create with her beautiful form.  There will always be a Calantha-shaped hole in my heart.  But she is worth it.  God, is she worth it.  I would go back and have her a thousand time, even knowing exactly how it would end.  I love her.

The Lady’s Doing, A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

I’m sure there will be more posts about her in the future, but this is more than long enough for now.  I will leave you just with this quote that she nudged me to re-read from the book version of The Last Unicorn, of Schmendrick talking to Lir:

“Your true task has just begun and you may never know in this life if you have succeeded, but only if you fail.  As for her, she is a story with no ending, happy or sad.  She can never belong to anything mortal enough to want her.  Yet be content, my lord.  No man has ever had more of her grace than you, and no other will ever be blessed by her remembrance.  You have served her and loved her.  Be content and be king. … It cannot be ill fortune to have have loved a unicorn.  Surely it must be the dearest luck of all, though the hardest earned.

She is my unicorn.  Always.

The first time I held her, 14 years ago.

A Very Late 2017 High/Low – Coming Out Of The Spiritual Closet

I usually do a post at the end or beginning of the year, looking back at the high points, and mulling over the low ones to release them.  My blog has been so neglected the whole of last year, as my art has been too, and it’s taken me up till now to find the time and energy and mental ability to put this post together.

2017 was just a bad year ME-wise.  At the start of the year, I honestly felt like I was slowly dying (and not just in the sense that we all are).  Thankfully, last August, I began seeing a naturopath who gives me IV vitamin and mineral infusions and I’ve seen a big difference in how I feel getting them regularly.  I’m still crawling out of the ME-hole and have even less energy than any year before, but I feel like it’s getting slowly better instead of always worse, now that I’m getting these treatments.

Speaking of, an enormous THANK YOU to every single one of you who has contributed so generously to my GoFundMe campaign to help me continue the quite expensive IV treatments.  Thank you, thank you, thank you!  I am incredibly grateful and humbled and every gift has been so deeply appreciated.

Last November my neurologist put me on a new medication to try and help ease my migraines.  He warned me that it would make me feel “extremely nauseated” for the first week, but I’d just have to push through that, and then he thought it would help me.  I finally screwed up my courage and swallowed one of the dubious pills and did, indeed, have a terrible night full of nausea, hot and cold sweats, extreme temperature swings and a strange, but not unwelcomed, detachment.  I continued on like a good patient and after three weeks I finally stopped needing to take a sublingual Zofran the second I opened my eyes in the morning (morning nausea was always the worst, maybe because I take it at night?) and it began to settle into my body.  The good thing is that it did indeed help decrease the number of migraines I’m getting per month.  The bad thing is that ever since taking it, I’ve needed to sleep for a good 2-4 hours EVERY SINGLE AFTERNOON.  This is on top on the 10-12 hours I spend sleeping every night.  Do you realize how few hours are left in the day to do ANYTHING of value after all that damn sleeping, winding down and waking up is over with?  It’s really insane.  I will be bringing this up to my neurologist and seeing what can be done because I’m not sure this is a realistic way for me to live the rest of my life.  On the other hand, some months prior to this I was getting up to 19 migraines a month, which destroys your ability to do anything meaningful as well.

And, for some completely unknown reason, the medication also seems to be helping (in conjuncture with the IV infusions) with my temperature regulation issues, ie, my “hot flashes.”  I believe I’ve mentioned them here before, but in case I haven’t, these have been slowly increasing for the last three or four years.  Essentially, what seems to be happening, from my vantage point stuck inside this body, is that in the mornings, wild rabbits have run through my brain overnight, nibbling on wires, pulling things apart, gathering bits of gray matter together to make little warrens, disconnecting neurons and causing a bit of havoc.  My brain is wildly trying to repair itself, ideally quickly, and makes a lot of very broad guesses about what temperature my body should be at for the first several hours of the day.  What this translates to practically is that I can be sitting miserably directly in front of the heater, covered in layers of blankets, bathrobes and cats, sweating profusely, simultaneously far too hot, but getting many more signals that I’m far too cold and must stay PERFECTLY STILL for several hours until it passes on its own.  This is also very not conducive to getting anything done at all.

And  yes, I did see numerous doctors about this.  The first three shrugged at me and told me it sounded hormonal and that wasn’t their field, which is fair enough.  I finally saw an endocrinologist for this problem and he ran a bunch of blood but didn’t bother to look at a single hormone.  Apparently you have to request that an endocrinologist, a doctor who specializes in hormones, test your hormones when you’re seeing him for something which sounds, to laymen and other doctors, like a hormone problem.  I did not punch him, but probably only because I was too tired.  (I also asked my gynecologist about it since they deal with female hormone issues too, to a degree, and she had a “Oh, let’s not go looking for trouble,” attitude about it.  I AM ALREADY IN TROUBLE.)  So the underlying issue there is still unknown but hell, if the infusions and the weird pill help with it, I’m happy about that at least.

Basically I feel like 2017 was mostly spent crawling on my stomach through a disgusting swamp while people shot at me from hidden locations, periodically shouting that I wasn’t trying hard enough or that I was just over-reacting, while also making sure I brushed and flossed my teeth and fed my animals twice a day.  I’ll freely admit it was a pretty shitty year.

Here is the upside to all that time spent in deep solitude, my mind active as ever but my body unable to do much: I had a lot of time to meditate and connect with my spirit guides.  I think I met my first guide near the end of 2016, so I was primed for more contact when 2017 came around.  And boy did they.  I acquired five new main guides and spoke to numerous others.  I talked with and made friends with various interdimensional beings.  I am learning to channel, astral project and remote view, be  medium, a conduit and a spirit translator, although I’m getting fairly good at some of them, considering the short amount of time I’ve been at it.  For some reason historical figures I read about seem to connect best with me.  The spiritual growth in the last year has been an absolute explosion of love and light into a very dark year.  And though it was such an awful year, I look back on it and remember all the love and grace that was shown to me.  I have never felt more loved, protected and cared for.

So while I am disheartened with the amount of art I was able to put out last year, I AM very happy with what came in its place.  I’m thinking of it as I took a year off from art to go have mystical, spiritual experiences, and hopefully now I can marry the two together better.  I just need to find a new way to work in really short chunks instead of stretches of the afternoon so I can increase my art output.  Then things will be much more the way I’d like them to be.

If I had to have such a crappy year to gain so much spiritually, I’ll take it.  I don’t know if it was a direct trade or how it works, but I wouldn’t give up the new friends I have for anything.  And I’ve found some really, really wonderful online communities who love me, support me, have my back, help me work through confusing things, answer my questions and reassure me that I’m always ok.

For anyone concerned, I have shared many intimate details of my experiences with both the wonderful Geoff and my excellent therapist and neither of them is concerned about my mental wellbeing.  🙂  Only loving beings are allowed to talk to me, and as I said, I feel much greater peace, security, love and support than I ever have.

Now on to this image… this might look like it goes against what I just wrote, but it’s inspired by someone else’s experiences, not mine.  🙂  Over Christmas, I re-read Demons in the Age of Light by Whitney Robinson, which I’ve read many times now and is a favorite for its beautifully poetic prose.  Whitney’s memoir is about a psychotic break she suffered in college, where she felt like she was possessed by a demonic entity but everyone diagnosed her as schizophrenic.  Her journey back to wellness is haunted by the ever-present question of if she’s experiencing something mental or spiritual, and the answer is often allusive and not nearly as clear as you’d think.

“The sentience envelopes me while I sleep…  I awaken with a gasp in a strange bed.  No, it’s not the bed that’s strange – it’s the same one I’ve slept in since I was a child…

The strangeness is that I am not alone, here in my bed.  I will never be alone again.

I feel it slithering out of the darkness for the first time, the presence that’s been whispering its sinister enigmas.  A living, breathing thing – cold stars and glittering mathematics with the inhale, hot copper and rotten fruit with the exhale.  Foreign from anything I have ever known.  Other.”

I loved how the usually comforting, loving idea of never being alone has been turned in this passage into something deeply wrong and full of dread.  I wanted to try and capture that feeling just before she was overtaken by the being she calls the Other, of knowing the possession is imminent and you are helpless to stop it.  And of course I used my favorite little lamp to light the scene, exactly as it’s shown in the image.

I wasn’t planning on uploading this on Valentine’s Day, but I suppose it does make a dark, sinister anti-Valentine’s-Day image, haha!

Never Alone Again – ​​© Sarah Allegra

My GoFundMe Campaign – Help Me Fight ME/CFS!

My poor blog has been so neglected this year!  And this isn’t going to be a real, proper update either, but I did want to share this important information here.  Let me get that out of the way first.

I need some help.

Most of you reading this will know I’ve been battling ME/CFS for over nine years and it’s been a losing battle.  However, I recently started seeing a local naturopath who has been giving me IV vitamin and mineral infusions.  I was delighted and shocked when I realized that they really, truly help me!  In fact, they help much more than any other treatment I have yet tried.  All without any side effects, and they boost my overall health in addition to helping my body fight off the ME/CFS.

The ONLY downside to them is that they need to be done weekly, they are very expensive and none of it is covered by insurance.

This is where I can use your help.

After much thought, I decided it was ok to ask for help and set up a GoFundMe to help me afford my treatments.  If you can contribute, any amount, I would be so grateful!  If you can’t, I also completely understand.  Even if you can’t contribute, just sharing the campaign on your social media accounts would be extremely helpful!  My GoFundMe page is located here: https://www.gofundme.com/helpsarahbeatmecfs

I have also revamped my Red Bubble account to include prints at much more affordable prices, among the many, many other items they have to offer (tshirts, mugs, scarves, phone covers, etc) which all have my images on them.  Any profits from those sales will go towards funding my treatments as well: https://www.redbubble.com/people/sarahallegra

Thank you to each and every one of you.  I am very ready to be done with the ME/CFS chapter of my life.  It has gone on for far too long already.  I’m hopeful that with the continued treatments, I will get better and better, which will hopefully also give me more time, energy and spoons to spend creating art and giving my blog a little more attention!

Thank you to absolutely everyone!!

Getting infused! https://www.gofundme.com/helpsarahbeatmecfs

Mourning Dove

Oh my goodness… so, so much has happened recently that I feel completely overwhelmed in sitting (or, rather, laying) down to tell you about it!  But I have a new image to share with you and I really wanted to post it and maybe give you guys a little gloss-over update at least, so I’m just going for it.  If I let myself think about it any longer, I’ll just get frozen with intimidation over how much I’d like to cover!

First news: health is poor.  I mean, yes, you all know my health is pretty much always poor, but it’s been even more so lately.  I feel like it’s been slowly sliding downhill over the past… year?  year and a half?  two years?  But the last six-to-nine months have been extra bad.  I think I’ve told some of you at least about the “hot flashes” I’ve been getting.  It’s actually quite a lot more complicated than calling them “hot flashes” implies, but I don’t know a better name to get the general idea across with, so we’re going to call them “hot flashes.”  What it really is, is my body suddenly seems unable to regulate its temperature properly, which sends me into sudden, drenching sweats, often while I’m shivering with cold at the same time.  Very similar to the sort of sweats you get with a fever, but it only lasts a few hours, it comes and goes quite randomly, I have absolutely no other fever symptoms and it seems to ONLY happen in the morning (because that’s when my day is busiest, I have the most appointments scheduled, etc, so it can be the most obnoxious).  This sounds like something that’s just annoying, which it is, but it’s quite a bit worse than that.  It makes me weak and lightheaded, it’s not something I can simply push through by will alone; I might have to cancel appointments or send Geoff to the grocery store on his own.  We both utterly detest grocery shopping, but I’m much too weak to do it on my own anymore, and if I at least go with Geoff, it’s company for a task no one enjoys, so I always feel bad if I have to make him do it by himself.

These were getting so bad and disruptive for a while that I saw my GP about it.  He tested my thyroid and a couple of other things in my blood, examined me, decided it wasn’t anything menopause-related (which, yes, would be QUITE young to start having them, but stranger things have happened), said it sounded hormonal and sent me on my way.  I saw my neurologist, he said it wasn’t anything neurological and I should probably see an endocrinologist; a doctor who specializes in looking at your hormones.  I also happened to see my pain specialist during this time just for my every-three-months-check-in, and mentioned it to him, and he agreed it sounded hormonal, but was outside his expertise.  So I did some research, found an endocrinologist nearby who got good reviews online and made an appointment.

The first bad sign was that the endo’s office doesn’t accept credit cards of any kind, only cash or checks, which they had not mentioned in ANY of the conversations I had with them when I set my appointment up.  Not only is that just absurdly behind the times, but I, like most people this day and age, very, very rarely carry either cash or a checkbook on me.  Before going to this doctor, I couldn’t tell you the last time I wrote a check.  Thankfully, I happened to have shoved my checkbook in the bottom of my purse anyway, but I had a mini panic attack in the waiting room wondering how I was going to pay these people.

Eventually I found it though and went into my appointment, which was mostly going over my medical history with the doctor and explaining what the problem I was seeing him for was.  Obviously, my medical history is much more like something George RR Martin would write about than a quick-read paperback, but the doctor interrupted me quite a lot as I tried to tell him details which were important and extremely pertinent to the hot flashes I was seeing him for.  Obviously, I did not care for that, but it is a very common problem with doctors.  If I wrote off every doctor who interrupted me while I was explaining things, I wouldn’t have any doctors left to see.  Anyway, he ALSO agreed it sounded hormonal and said we’d run a bunch of blood tests to see what was going on.  We’d be repeating everything my GP had already run because, the endo said, his tests were more thorough.  Ok, fine.  Six vials of fasted blood later, they were sent to the lab, Geoff bought me breakfast and I waited a week’s time until I could get my results from the doctor.

In this appointment (paid for with the check book which I’d triple-checked was still in my purse after the stress of the first visit), the doctor went over each page of the bloodwork results with me, explaining what was tested and how every single thing came back normal.  My blood was normal, thus, I was “perfectly healthy!” and did not need to see him any more expect for in another six months to recheck my blood and make sure it was still all normal and I was healthy.

Obviously, I am not healthy.  Even if you discount my mountain of other ME-related issues, the fact that I was presenting with extremely hormonal-sounding problems should indicate that something is amiss.  This doctor had absolutely no interest in finding out what this life-interrupting issue was though.  The impression he gave me was that he thought I was an overly worried, mildly hypochondriac girl getting her pigtails in a twist over nothing and that showing me that my bloodwork said there was nothing wrong would make the problem go away, because it was  probably something I’d dredged up on my own through pure will.  But the most offensive part of all… he did not check one single motherfucking hormone.  Not ONE.  On a case where three other doctors all had said the issue sounded hormonal, I told him I was concerned it was hormonal, he didn’t bother to check anything.

I’ve since been told by other people who have to see endos regularly that you usually have to specifically ask them to check your hormones, if that’s something you want.  WHY???  You don’t have to do this with ANY OTHER medical specialty.  I don’t have to tell my neurologist to check my brain, I haven’t had to tell my gynecologist to examine my lady parts.  How is this something that is not only allowed, but is COMMON in this one niche???

At the time he was going over the bloodwork with me in the room, I was trying to control being wildly disappointed over having yet another problem come back testing as “normal” and being shunted off again, again being treated as if I was making this all up, again being patronizingly patted and being told to not worry my pretty little head about it.  Look, I’m sorry that my disease isn’t something they teach a lot about in medical school, I really am.  I’m sorry that most doctors feel threatened when confronted with something they can’t simply write a prescription for and it’s solved.  I’m sorry that it makes them feel insecure, as if they don’t know what they’re doing because I don’t have an easy fix.  I am far, far sorrier about that than any doctor who’s treated me like a hot potato could ever be.  But I do not go around to doctors’ offices for fun to mock them for their lack of knowledge.  I go in with an open mind every time, despite years of consistent disappointment, hoping that, just maybe, this will be the time when I get an answer.  Not even THE answer, just a part of it.  But to not test any hormones for a presenting issue that, to every lay-person and doctor I’ve spoken to, sounds extremely hormonal is inexcusable.  I spent a lot of money in copays, I spent six vials of blood my body could have used, I spent a lot of time gearing up for appointments and recovering from them, I spent incredibly precious energy getting to my appointments, getting tests done, and sobbing after my last appointment as my hopes were again dashed and I realized it had all been wasted.  The absolute least the doctor could have done was run the tests I wanted done but didn’t know that I had to ask for specifically by name, because that’s how endocrinologists are.

Each time I have one of these horrible experiences with medical professionals, it makes it so, so much harder to even fathom trying again.  Why should I if most of them are going to just call me crazy and kick me out of their offices as quickly as possible?  And of course I know that I have to keep trying because giving up isn’t an option, but for fuck’s sake, can’t they at least try and meet me in the middle somewhere?

After that edifying experience, I couldn’t even bear the thought of looking for another endo and starting the process over again, even knowing now that you have to ask for your hormones to be tested.  The wound was just too raw.  What I did have was an appointment set up with Celestine Grace, my very favorite medium, who’s helped me a lot in the time we’ve been working together.  I asked her what would help my body and she told me to take rose hip supplements, which I knew are very high in vitamin C.  They’re cheap and easily available from Amazon, so I got a bottle and started taking them.  And you know what?  Within a couple weeks, my hot flashes had gone down considerably.  They still popped up now and then, but the difference was huge.  I ran out of them and it took a few days before I could get my replacement bottle in, and while I was off them, my hot flashes spiked again.  I’m back on them now and they’re going back down, but it might take a couple weeks, like it did the first time.

I am so, so grateful to Celestine for that bit of advice and for helping to turn around a very bad situation (and also all the other help and advice she’s given me over the year or so we’ve known each other) but it’s so incredibly ironic to me that four conventional doctors couldn’t or wouldn’t help me, but my medium did.  It goes to show the strength of her talent while underscoring how little conventional Western medicine has to offer me.  Thank you, Celestine, I can’t tell you how much those rose hips have helped me!

The whole thing got me thinking that I may just need a whole different approach to my health, so I began to look into different specialists and alternative treatments.  I mean, that’s something I’m continually on the lookout for, but I was searching with a new urgency this time.  Giving vitamin C intravenously has been a growing trend… since my body had responded well to the rose hips, maybe it would like a more concentrated dose even more!  I have found a naturopath who is nearby, returned my phone call herself to discuss if we would be a good fit for each other and offers IV vitamin C along with a ton of other therapies I’ve been interested in but haven’t been pushed far enough to try yet, since most are expensive and not covered by insurance.  I have an appointment with that doctor next Monday morning, which will just be a consultation between one to two hours where we just go over my history, what changes I’d like to see and what treatments might be good for me.  They also test hormones.  🙂  As hard as it is for me to allow myself to be hopeful that maybe this time it will work, I can feel hope trying to quietly creep in.  I’ll let you guys know how that appointment goes.

As my body has gotten more and more painful and uncomfortable to inhabit, I’ve been turning to my own form of spirituality for strength and comfort.  It works for me.  It helps significantly, so much so that Geoff has noticed its effect.  It’s a bit too much to get into it all now, but it’s based in meditation and finding my own path up the mountain toward god/source.  A lot of it might sound like new age woo-woo, but I stick with what works, and this does.  My variety of spirit guides have been a big part of keeping me from utterly falling apart as things have gotten more and more difficult all around… just thinking about them makes me feel more peaceful.

I frequently mourn the health I once had, the life I once had, everything ME has taken away from me.  I mourn for those who I wish I could have gotten to know in this life and not just in the next.  I still mourn the loss of our previous home with our incredible neighbors, even though this place is finally feeling more like home and we have great new neighbors here.  Mourning is a universal human experience; I’m sure every one of you can think of things you mourn.

My new city has a lovely, tiny, serene, old little cemetery within what would be walking distance for most people from my home.  I wanted to shoot there when I had the excellent Teri Wyble over (quite a while ago now, I’m terribly behind on editing).  I didn’t know exactly why I wanted to shoot there, or what I was trying to say at the time.  This sometimes happens.  I’ve learned by now to just go with it, that its reason will become clear to me later.  That was the case with this image.  I asked Teri to imagine this was the grave of someone she loved and missed horribly; someone whose loss she still mourned.  I don’t know if she was tapping into a loss in her own life or if she’s just very good at imagining, but she portrayed exactly what I wanted:

Loss.  An inability to move on from the blow of death.

But I didn’t want it to be completely bleak.  The birds swooping in to comfort her speaks to me of the healing that comes after we let ourselves grieve.  Yes, you have to pass through the darkness first, but there is eventually light.  Sometimes it comes to you on feathered wings when you least expect it.

Whether the viewer has recently experienced this themselves or not, it’s such a common part of just being human, I wanted to create this.  Not to wallow in the mud of despair, but to remind myself that the heaviness will someday lift.  The pain will ease.  The grief will lessen.  Maybe even, a treatment will eventually work.

Thank you so very much, Teri, for your beautiful, emotive modeling!  You are a wonderful human being and model.  🙂

Enjoy, my friends!  If this speaks to you, I’d love to hear what it brings up if you’d like to share that in the comments!

Shades Of Sleep: Invisible Illness Day

Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject.  If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see.  If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them.  Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses.  This is by no means a comprehensive list, just a few examples.

According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible.  This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general.  If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?

That’s why May 12th is so important.  We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to.  Awareness is the critical first step in any change happening.

Why is it so important that we treat ME?  What makes our disease so special?

It can be fatal.  People die from this.  If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.

No one should have to live like this.  As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell.  Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die.  It takes away the plans you had for a normal, fulfilling life.  Careers, hobbies and passions are taken from you.  You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything.  (More on brain fog later.)

We deserve to live happy, fulfilling lives, just like everyone else.  When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself.  And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before.  On a good day for me, it’s like how other people when they have the flu.  A constant, crushing weight that makes the slightest exertion a Herculean effort.  On bad days all I can do is lay in bed and drag myself to the bathroom periodically.  Sometimes even feeding myself is a challenge.  I might have to choose between feeding my animals or myself, because I don’t have the energy for both.  And of course the animals always win; they’re my responsibility.

I am mostly house-bound and I require help with the sort of tasks I used to take for granted.  Forgot something at the store?  No problem, just go back tomorrow!  Nope, not with ME.  Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it.  If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least.  (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.)  When I do gather my strength to photograph models, that is my exertion for the entire week at least.

ME is extremely isolating.  You can’t just go hang out with friends.  You can rarely make it to family functions.  Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today.  I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.

ME is vengeful god.  If you violate any of its insane decrees, you WILL be punished.  Probably for a long time; sometimes forever.  There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it.  At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too.  Damned if you do, damned if you don’t.

Right now ME received approximately 5 million dollars a year in funding from the US government.  To put that in perspective, that’s about the same amount given to researching hayfever.  Male pattern baldness gets at least four times as much.  HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount.  I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should!  What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.

This year I decided to do something that was a big stretch for me physically.  I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME.  Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head.  But I’m not sorry.  It was worth it.

Oh yes, brain fog.  (Which I’ve got a bit of as I’m writing this.)  It’s like when you have a fever and can’t concentrate or think clearly.  Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language.  Most days it’s more like mentally wading through a bog, at least for me.  I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst.  I think it will be obvious how I incorporated that element into the images.

I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well!  I want you: you, who are reading this right now, to #GoBlue4ME!  Why blue?  Because that’s our disease’s awareness ribbon color.  What does “going blue” mean?  There are any number of things you could do to go blue.  I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!).  You are more than welcome to download them and use them however you’d like!  You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts.  You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!

For makeup artists, I’m issuing a special challenge.  As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look.  Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING.  I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag!  If you’re on YouTube and create makeup tutorial videos, this would be perfect for you.  There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend!  You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!

I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same.  And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂  Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!

Ready to see the video and my images?  Here you go!  I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.

And please, pass these around!  Share the links, video and images with anyone and everyone!  We have to make a lot of noise to get the change we so desperately need.  You have my full permission to share far and wide!

And please, if you take up the #GoBlue4ME challenge, let me know!  Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!

One last note, your going blue does NOT need to happen on or before May 12th.  Keep doing it as long as you’d like to!  The longer we can keep the word spreading, the better.

Thank you to absolutely everyone who has and will participate in this!  You are helping so many more people than you know.  I thank you from the deepest wells of my heart.

Download these images and make them your profile photos for a day!

Shades of Sleep, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shades of Dreams, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shades of Blur, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate.  You’ll find as many different opinions as there are sufferers.  It is my personal belief that they’re probably all the same thing, or at least all very closely related.  Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with.  I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]

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