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Veta Collins, beloved Mom

I was doing it wrong, and I knew it. It was one year ago today, my mom had just died, but I wasn’t crying.

“Something’s wrong with me,” I confided, oh so quietly, to those closest to me, a week later. They assured me there was no right way, no wrong way, to grieve. That it would come, when it was time, when I was ready.

Apparently, that time arrived at 9 PM last night. I was thinking about what state of mind I was in a year ago, waiting for The Call to tell me she had passed away.

The dam burst, and finally, the river of tears flowed. I wasn’t just missing her any more – I was mourning.

All day today, I’ve gone through it all again, remembering the sad details of the time between her stroke and her death, writing them out. If I don’t remember them, and acknowledge them, how can I let them go?

I was in a very precarious state, physically, by the time my mom died, two months after a hemorrhagic stroke. Those months were a nightmare, watching my strong, capable, and independent mom being broken into a mere shell of herself. I suspect the mourning got put on hold, subconsciously, so I could recover from the toll the physical, emotional, and mental stress had taken on my own fragile body. Those of us with ME, CFS, fibromyalgia, etc, have to carefully and frugally measure out our energy use, our spoons. (See Always Counting Spoons if you aren’t familiar with this concept).

But there was little I wouldn’t do for my mom. She had always been there for me, through my many mistakes in life, always ready to pick me up and help me out. We were best friends who spoke most every day, and had no secrets.

She was also a real rarity, because she believed in me despite my illness, and supported me both emotionally and financially.

You might think any mother would support a sick daughter, but that’s very sadly untrue when the illness is ME (myalgic encephalomylitis), CFS (chronic fatigue syndrome), fibromyalgia, chronic Lyme. They are not understood even by many doctors other than a few specialists, and family, well, most family members don’t take the time to try to understand. I have a lot of friends ill with the same things, and very few have the support of their families, or only part of the family.

I was so very lucky, to have my mom until she was 89. She was still telling me about any article or show she saw where my illnesses were mentioned, still reading articles about it that I posted on Facebook, trying to understand better. She still listened to me moan and groan and complain when I needed to.

I had her, and I have my youngest daughter, who has a milder version of these damn diseases. She’s my caregiver, my best friend, my defender, intelligent and brave, and with a bit of her grandmother’s iron spine. You don’t want to piss her off anymore than you did my mom – her grandmother taught her well. I have my son-in-law here, too, who very bravely accepted the weight of being part of our family. It’s not an easy thing, being a caregiver to someone like me, mostly bedbound. But such is the power of Love.

I couldn’t get through this life without them, and I don’t know how my friends who have no family support do it.

I’ve been blessed, that’s for sure, and I’m so very thankful for my mom’s steadfast love and support. I will always love her, and I know she’s watching over me, loving me still.

Love never dies.

Shores of Avalon

Reflecting…
In some ways, I was relieved when my mom finally passed away. Seeing her the way she was, two months after a hemorrhagic stroke, ripped my heart out every day. She’d had the stroke in early September, and the months since had been filled with far too few ups, far too many downs, and devastating punches to the gut.

She was only affected physically a little, and that mostly passed. But her mind… That bore the brunt of the bleeding in her brain. That is what haunts me.

Dementia was just a word, without real meaning, until I watched, from a distance, as she slid further and further away. I wanted to go to her, in Houston, but I’m homebound with my own illnesses, and there was no way I could travel.

There were endless phone calls, trying to talk to her, and talking to her doctors, nurses, and my brother and sister-in-law, who were there. Hours spent researching, trying to understand the possibilities for recovery.

More hours went into hacking into her patient record at the hospital, pouring over the flood of lab and test results, learning a whole new area of medical terminology, translating that for family, and relaying it all to my eldest, who was deployed to the middle east.

I’d already spent 4 years being my mom’s patient advocate from a distance, intervening with doctors, calling, faxing, emailing, tracking her labs, researching her meds and demanding changes from doctors who were too busy to spend the time I was.

She was 89 years old. Every problem was written off as “just getting older.” How angry that still makes me. If they’d paid more attention, they’d worked harder to control her blood pressure, and sent her to the ER when her BP was incredibly high and she had a headache, the outcome could have been different.

After the stroke, my brother would bring the iPad to the hospital, so we could do video chats. They were difficult from the start, seeing my mom’s confusion, anxiety, distress, and fear. She didn’t understand that she’d had a stroke, where she was, or what was happening. Sometimes she knew me, sometimes she didn’t. The nurses said she was often combative, angry and afraid, cussing them out while they tried to help.

As the days turned to weeks, getting her to eat, drink, and take her meds, became nearly impossible. She went from hospital to nursing facility and back numerous times, with new issues cropping up, one after the other. She often would wander around, and had many falls.

The last video chat we had haunts me. My brother propped the iPad up on the table, so I felt like I was there, but I don’t think she even looked at me. Her face was gaunt, and her always beautiful skin was marred by large deep purple and green bruises, with more on her arms and legs, from her falls. Her eyes stared blankly, empty except for anger when my brother tried to get her to eat her meds-laced ice cream.

She wasn’t there. The spark of Love and Life that animated my mother, spilled from her over me for my whole life, was gone. I knew she would be appalled at her condition, and would never have wanted to go through all this. I cried that day, to see her so diminished, bruised and battered, who had always been so strong and imposing.

Making the decision to put her in the gentle hands of hospice care that day was easy. The doctors now said she had terminal dementia. Hospice would see that she was comfortable, allowed to slip away naturally.

The day after hospice took over, she went to sleep, and became unresponsive. My brother showed me her nice room on chat, with all her furniture, as she laid still, on the bed. No more IV’s, no more prodding her to eat, no more distress. Resting gently, she slipped deeper and deeper into a coma.

I thought she would pass away quickly after that, but she was stubborn to the end. Every night I went to sleep, so lightly, in case The Call came in. A kind-hearted hospice nurse told me it could “be a while,” and he had one patient who went 33 days in a coma, in what is basically a hibernation state. I had no idea someone could linger that long without water or an IV.

The waiting was hard, and very busy, helping to arrange a funeral in her tiny home town of Loop, TX, and keeping folks aware of developments.

My ill body was not taking all this well, and I was having some major physical issues. Too little sleep, too much laying in bed wondering how she was in the middle of the night, too little eating… I tried desperately to stabilize my own system.

My mom lasted 6 days. The Call I’d been expecting came moments after I woke up on my own, alarmed. We’d both always known when the other was going to call, and this final call was no exception.

Gazing over the mountains my mom had loved so much, I watched the dawn light creep into the day, as I had just enough time to say a final goodbye.

I felt her then, and I’ve felt her presence many times since then. And I always will.
She was truly my guardian angel in life, and nothing’s going to stop her from continuing to look out for me.

This, I know.

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This story starts with a dog, and ends with another. It’s long, and touches on sensitive subjects, with raw, open, honesty. The last 10 months have been quite a journey, full of sorrow, shock, a moment of extreme clarity, a lot of contemplation, reflection, unexpected dreams, and then resolution, when the dream became reality.

It started with watching the slow decline of our elderly dog, Kasha, who had a number of health issues. The most difficult was degenerative disc disease, and as last summer turned to fall, she was having increasing difficulties controlling her rear legs.

Then came a shocking phone call, when I found out my spinal x-rays didn’t show the herniated disc I expected, but instead showed that I, too, have, “severe multilevel degenerative disc disease,” on top of everything else.

I was caught way off guard. I had been working on the premise that I am going to get the ME/CFS under control, using all my supplements, and that one day, once I figure out these migraines or get thru perimenopause, I was going to be back to some semblance of myself – I know there’s damage that will always be there, but I think there’s a lot that can be fixed, too, slowly, over time.

But, it’s basically going to be with me the rest of my life. There are a few things I can do, some supplements and maybe some physical therapy, and I’ve gotten a TENS unit that helps. But my spine is very unstable – I’ve been going through periods for two years, where I “throw my back out,” and I can feel the discs moving out of place, and pain and sciatica flares like a bonfire.

After absorbing this news, I walked out into the living room to find that Kasha had lost control of her bowels, and there was a trail of poop leading through the living room and onto the porch. She was lying there looking so very ashamed.

It triggered a moment of extreme clarity, a frozen moment in time, where I knew two things for certain:

Kasha was at her “red line,” the place where dogs with degenerative disc disease are no longer recoverable – it was not going to go away with rest and time, and was going to be the end of her, and soon.

And just as clearly, I felt that I, too, now have a red line, though I’m not to it yet. My mind played it out for me… me with a walker, or in a wheelchair, although I don’t know how I could even use either because of a torn up shoulder, and the weakness and utter exhaustion of ME, CFS, fibromyalgia, etc.

There was the feeling of a door slamming shut in my mind, those images simply shut out. I won’t, I simply can’t, live in a condition where I’m bed bound and need a wheelchair just to get around. And I won’t be that kind of burden on Rhiannon and Ben, either.

I wasn’t afraid.
I wasn’t sad.
I felt acceptance.
And, much to my dismay, I felt relieved.
Relieved, because the long fight would be over. I didn’t realise how very tired of the constant struggle I was.

I didn’t so much as make a decision as have one thrust on me from deep in my soul. Just as Kasha would find her peaceful end, in a beautiful, sacred, manner, when the pain became too much and when she couldn’t rise, I too, would find that place.

I have many friends, fellow patients, who have to use wheelchairs or walkers or scooters, and I have the utmost respect for them.

But that’s simply not something I can accept.
I have been sick for more than 17 years, and almost entirely housebound for 10 years.
I cannot accept any further limitations on my ability to move around.

I am meant to roam mountains and walk through my beloved woods.
I am meant to be a wild thing, and I can barely take the captivity I have already been in for much longer.
I am the wolf, tightly caged, pacing back and forth, going slowly crazy from my longing to be free.

But here was this realization that I wasn’t ever going to go running barefoot again, through the golden autumn woods calling to my Heart that day, because my spine is simply too unstable. That’s a huge and terrible loss, and the shattering of all the dreams and plans I’ve been holding on to… I wanted to get well enough to be able to help some of my dearest friends, my soul sisters with ME, CFS, fibromyalgia, etc, maybe share a house with them, all of us working to heal each other.

I watched each day as Kasha had a few ups and lots of downs, and it was like watching a train wreck in slow motion, knowing it was heading my way…

In the months since that moment of clarity, and through Kasha’s gentle passing, the sacredness of her death, a gentle release with mercy, I’ve spent many sleepless nights, thinking about just what I wanted to do, and how much fight was left in me for this new, seemingly insurmountable, challenge to my health and my life. There are things I want to do, and things I need to do.

And then along came some dreams, and some info about dogs, that had me reevaluating how long I am willing to fight to go on.

Twenty years ago, living in fear from a relationship gone terribly bad, I lay awake in bed at night, too stressed and worried to sleep. I found solace in meditation and visualization (shamanic journeying). Usually, I would “go” to a beautiful forest at night, and run as a wolf until I finally curled up, safe, in my den. I’d fade off to sleep that way.

But one night, instead of being in my forest, I found myself high on a rocky outcropping, in a sea of rippling sand. I could see in every direction around me, see that I was safe. I laid down in the sand, pulled my cloak around me, and felt desert winds deposit a soft blanket of sand on me. For years, every night, I went to the desert to sleep.

I studied the desert as it is today, and as it was. I drove my family crazy with my sudden obsession with the desert. I didn’t explain that the desert had come to me, unexpectedly, but it was saving my sanity.

The decades passed, and I eventually went back to my forest – until my moment of clarity. Ever since then, every night, I retreat to incredible vistas of desert dunes, open caves and hidden chambers. This time, though, there is something else there with me: a lean desert dog, colored the same as the sand, and with electric eyes that look right through me. I know the feel of her soft ears, and my fingers remember the shape of her head under my hand.

Salukis, a beautiful desert Sighthound, have fascinated me since the desert came to me. They are perhaps the oldest of all dog breeds, and the only type of dog who was not seen as “unclean.” Desert nomads have cherished the Saluki for thousands of years. I’ve wanted to have a Saluki or Saluki mix for 20 years.

But now, through chance, I learned that most people in the middle east treat dogs in horrible, horrifying, ways. They do not value them as we do. Many Salukis and other dogs are simply dumped in the desert when the owner tires of them, or if a racing Saluki doesn’t run fast enough. Some racing Salukis have their ears cropped off “to make them run faster.”  The Salukis have bred with the many other dumped dogs, and now “desert dogs” are pretty much a breed of their own – small Sighthounds, usually with short fur and tails that spiral into a curl.

The pictures are terrible to see. Dogs so emaciated you can’t believe they are alive, or who’ve been viciously beaten, or thrown out of a moving car, leaving them with broken legs. Dogs who have been shot by the police, in front of children, when an area has too many strays. Dogs beaten with stones by children, who know no better. Need I go on?

It broke my heart.

The question changed from “when” to give up the fight, to a very simple, “do I want to die without first rescuing a desert dog? Or do I want to hold on long enough to rescue my dream dog, a true desert dog, and experience her life with me?”

Adopting a dog from the middle east can be somewhat complicated, but there are many groups and individuals there, mostly westerners, who are involved in rescuing the ones they can, fostering them a time, then finding them new homes in the U.S. and Europe. Some send the dogs to the U.S. first, and then put them up for adoption, and others work directly with those wishing to adopt.

I began watching the various groups on Facebook in late winter, and the number of dogs needing new homes is overwhelming. But if I was to rescue one, it had to be the one from my dreams…

And then, there she was. A desert dog with electric, topaz blue eyes, just as I’d been dreaming of. I really didn’t think she could exist. But she does.

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Ellie is about one year old, and was found dumped to starve or fend for herself. Despite that, I hear she’s an incredibly loving and gentle dog. She’s not too big, and not too small, either, weighing in at 40 pounds.

After weeks of working on arrangements, my Ellie will be flying from Dubai, in the UAE, home to me on Monday, June 27. What a birthday present!

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For me, Ellie is Hope – hope that I will have improvements in my health, and she is incentive to keep on fighting, keep on going, no matter how hard it sometimes is. By fulfilling my dream of having a desert dog, my motivation and inspiration to keep moving forward to experience her whole life with her is immensely boosted. That’s just how much I love dogs.

I’ve also become close friends with Ellie’s amazing rescuer, Charlotte, and with Marci, who is practically a one woman whirlwind of dog rescuing in Al Ain, UAE. I am completely in awe of what they are doing, and will be forever grateful for all the hours of work, time and money, that went into getting Ellie cleared to fly and come home to me.

I’ve set up a fledgling Facebook page for them, in the hope of helping other dogs find homes. It gives me inspiration, to know that I can still do something with my life, even if all that it takes is monitoring a Facebook page. I’m not completely useless, after all.

I believe everything happens for a reason. It was not coincidence that I learned about the desperate conditions for dogs in the middle east, and it was not coincidence that Ellie showed up in need of a home, the dog from my dreams, one I didn’t think could possibly exist.

Ellie of the Topaz Eyes is the fulfillment of a 20 year long dream. If she can happen, what else might be waiting around the corner? All I know is that I have Hope again.

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Kasha

“Veterinarians deal with death the most out of any medical profession.”

“Does it ever really get any easier, euthanization?” asked the first year student.

“Every euthanization is difficult, but some hit harder than others…”
– from “Vet School” (TV show, NatGeo Wild)

Is there any such thing as a good death? A beautiful, peaceful, passing?

Is there a right way and a wrong way for the owners, scratch that, the human family of a beloved companion animal to act, when they have to free a well loved furry family member from life, because of illness or injury? When the vet is there, administering the fatal meds, is there a proper or expected or normal way to act? Or do they see a whole range of responses?

Strange questions to ask, I know, but you ought to be used to strange questions from me by now.

Our vet cried, along with Rhiannon and I, when we put dear Kasha to sleep, on Nov 2. I’m pretty sure it was my actions that caused that.

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In her prime...

Let me back up, and set the scene… Kasha was 12 or 13 years old, quite old for a giant of a dog, weighing over 100#. She was a shelter dog, rescued from the ASPCA when less than a year old. She had been a member of the family a long, long, time.

Kasha had developed multiple issues, including deafness, a heart condition, gallbladder problems, and then, canine degenerative disc disease began taking a huge toll on her, worsening dramatically in August. She had muscle spasms in her rear thighs and legs, and stiffness, then finally started having a hard time getting her rear legs up, standing or walking. She just couldn’t coordinate her back legs properly.

I watched her those last two weeks with her spinal issues weighing heavily on my mind. I had just been told that my own back pain wasn’t just scoliosis or a slipped disc.

No, nothing is ever that simple with me. Instead, I have “severe multilevel degenerative disc disease” of pretty much my whole spine. And Kasha had the canine equivalent.

So the question on my mind that last few weeks was, “is she in as much pain as I am?” Because I was in a lot of pain, with sharp pains in my spine, feeling discs moving around, sciatica in my hips making it hard to get comfortable, no matter what position I tried.

Did she feel that way? I don’t think so, at least not until the last few days, and I dosed her with pain meds then, while we waited for it to be Monday, and the vet able to come…

Books on grieving pet loss all say when you have to be the one to make the call, that so-dreaded and very final decision, that everyone feels guilty to some extent.

I didn’t. It couldn’t have been any clearer, watching this beautiful, still so-very-loving, old friend, drag herself around with her front legs, unable to stand her rear up without assistance. How affectionate she was those last few weeks, relishing all the extra attention she was getting…

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A young Kasha, right after her adoption...

We were lucky, and a local vet has just started doing house calls. She had known we were almost there, and was waiting to get the call… and then it was clearly, so clearly, time.

The vet was running late that day, but it turned out to be for the best, I think. We had moved Kasha out into the yard, and as the sun fell and the light began to die, we brought candles, many candles, outside.

For an hour or so, Rhiannon and I sat beside Kasha, lavishing her with Love, expensive treats, and cheese. We told her how much she meant to us, swapped stories about what a good dog she’d been, shared the funny stories, and commemorated her life.

We were ready, when the vet arrived. She quietly asked questions, to understand the situation better. We managed to stop crying long enough to answer them. I suspect our tear-streaked faces told her more than enough.

The vet was gentle and patient, and Kasha was soon sedated, nearly asleep, her head in my lap… the vet waited until we were ready, to give that final injection.

My forehead rested on Kasha’s, one hand cradling her head, the other in Rhiannon’s tight grip, as tears streamed like a river over Kasha’s head. I whispered to her that it was okay, that she should fly free, my beautiful girl, away from the pain, and that we’d be okay.

Kasha’s nose against my leg told me when her breathing slowed, and stopped.

I don’t know how it is for other people in the same situation.

But as deaths go, this one was peaceful, reverential, sacred. An act of mercy, a setting free, done with so very much Love. I can only hope my own passing, when it comes, is such a gentle one.

And maybe that’s why the vet cried. I don’t suppose it’s every day she sees a sacred passing, a silently sobbing owner, forehead to forehead, eye to eye, with her beloved companion, as their soul takes flight.
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You’re in the arms of the angels, now, Kasha.
We Love you.
Now, forever, and always.


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The Eagle (Social Security) delivers a kick in the face to the hapless canine (me).


Warning: there will be foul words in this post. I don’t use them often, but this is just the final straw. Venting ahead…

As you, my friends, know, this Summer has been hell.

Things got even “hotter” yesterday with the delivery of a letter from social security – and it wasn’t the kind of letter I had been hoping for.

The craziness started in May, when my Mom moved to Houston, I subluxated my shoulder & tore it even worse, was diagnosed with adrenal exhaustion, and re-visited Tick-Borne Disease treatment with my LLMD.

Then Rhiannon’s father become very ill and passed away, and we headed to Ohio, where he lived. My body has been precariously teetering ever since. There have been issues with the will, and her father’s estate, I have to deal with.

Stress on top of stress.

My shoulder has continued down its path of self-destruction, subluxating at will, catching & tearing more, making it more & more painful. I have no choice but to have surgery now.

I have to get appointments with an orthopedic surgeon and for a repeat shoulder MRI, and would if this migraine would just let up for a little while, and the crap stop falling on my head.

That’s why I’ve been writing less & less.
It hurts. A lot.

My weight continues to drop.
My doctors are very concerned by the muscle wasting (as am I). They have done countless labs, turned up a few abnormalities, but nothing to really explain it.

My LLMD thinks it might be TBD, likely Bartonella, but she thinks I’m too weak to do IV antibiotics, and might need IV nutrition first, because of malabsorption.

Both my docs want me to get an MRI/MRCP of my abdomen/liver/pancreas, plus a transvaginal ultrasound.

They are very clear about what they are looking for. Mostly, cancer. And, a reason as to why I’m not absorbing what I eat, and why I’m having “dysfunctional uterine bleeding” (I’m getting my period every 2 weeks, and with it a 5 or 6 day hormonal migraine from hell).

As I was getting a grip on all this, suddenly, my own father became very ill and passed away. This triggered a flood of memories of growing up, deep grief, sadness, and mourning.

My body reacted badly to the stress of that.

I’ve spent all week very weak, very shaky, having adrenal dumps & in hormonal migraine.

Just when I thought that there surely couldn’t be any more shit left to be dumped on me, that we had to be due a break…

I got a letter yesterday from social security.

I had appealed my social security disability application to the highest level, the appeals council. This has been going on for FOUR years.

There is mounds of evidence.
Thousands of pages of records.
Multiple letters from three different doctors.
And one very frank, very honest, heartbreaking letter from my youngest daughter, Rhiannon.

Despite all that, they turned me down. Again.

They didn’t even review it, standing by the administrative law judge’s decision.

According to my understanding, the judge broke the rules, because there’s a special rule for people with ME/CFS. I even pointed it out to him at the start of the hearing, and put that in my appeal.

I tried to get an attorney. You have to get a really good attorney. There’s lots of lawyers out there saying they do disability, but ME/CFS is not in SS’s blue book, so you can’t just have anyone. It has to be someone really good.

When I first applied, I was forced to have the application done by an organization that “specializes” in helping people get disability, because we were, and still are, receiving food stamps & TANF. They totally fucked up the application.

So I went to the attorney after my first two denials, and she pulled my file, read through it, but said she couldn’t take the case, because it was a mess, and she wouldnt get paid if she didn’t win, and she didn’t think she could win. She used to work for social security. She knows how they operate.

So I did the hearing & appeal myself. Was denied. Again and again.

Now I have 2 choices.

1. Appeal their decision, which means take them to Court – real, true, court. Civil court, the kind before a real judge, not one employed by social security. Sue the assholes. I would assume that would take a year or two.

Or,

2. File again & start from scratch, except since they have my medical records already it won’t really be from scratch. Instead of having my start date for disability be 1/2007 it will be 3/2011.

It means filling in a new application, which is about 40 pages long, if not more, but it can now be done online. I’ve spent much of today wandering through the social security website.

The kicker here is that they have dragged the process out so long that our TANF and, most importantly, my Medicaid, are about to run out, when Rhiannon turns 18 in December. My prescriptions and monthly doctor visits are at least $2,000 to $3,000 a month.

I cannot be without health coverage.

If it’s not going to be the SSDI Medicare I had hoped for, then it’s going to have to be SSI, and if I understand this correctly, the state will give me Medicaid until I get Medicare next March, and pay the co-pays, Medicare Part D, etc, after the Medicare kicks in.

Assuming I get approved.

I have a feeling I will, though. Not only am I a lot sicker, with this very dramatic weight loss (they apparently like shit like this), but I have a lot more documentation now than when this whole damned mess started, the forms will be filled in correctly, and I know a little known secret…

…Social Security has a rule whereby if you make a declaration that you are in “dire need” of approval immediately, for financial or medical reasons, they are required to move your application to the top of the stack.

It doesn’t get much more dire than this, folks. We’d have been out on the street years ago were it not for the generosity of my mother, and if I don’t get health care coverage lined up by December 1st it’s going to be very ugly.

So I will be very, very busy, in the coming days (or weeks), filling in the damned forms and marshalling the paperwork and re-reading the social security website.

Assuming my head doesn’t explode first. It really feels like it’s about to…

Thanks for listening…
~Ash

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My Dad, Feb., ’06

Today my father, Joseph L. Collins, passed away, but just moments before he did, I had a great and rare blessing, and I would like to share it with you.

My father was 84, and had been in the hospital a week, before being moved to rehab. However, he took a sudden turn for the worse early yesterday morning, with pneumonia and organ failure.

I spoke to him yesterday, and told him goodbye, and that I loved him, over the phone. I could hear him trying to reply, thru his oxygen mask.

My brother, Clay, flew down yesterday to be with our father, in Tampa, and hold vigil.

I spoke to my brother about 10am this morning, and he said that my dad wasn’t really conscious, but the nurses said that my dad was aware of those around him, and to keep talking to him.

I asked my brother to hold the phone to my father’s ear, intending to tell him that it was okay to move on, and that I loved him. The arrival of doctors & nurses interrupted this, and my brother said he would call me back.

The minutes turned to hours, and I heard nothing.

But, I felt a strong call to the porch, to sit & rock & survey the Woods.

Almost immediately, I very strongly felt my father’s presence.  I didn’t know if he had passed away already or not, but I could feel him standing there in front of me, and that there was a Divine Presence there with him, as if it was behind him. He was just radiating great Love.

I could not exactly see my dad… it was as if he stood in front of a very brilliant Light, so I could only see my father’s silhouette. That Light, I knew with absolute certainty, was the Light of God, and it was so bright I could not look upon it. But it was much more than Light… it was tremendous Love, Joy, and Peace.

My father spoke to me, then. I could hear his words, in his own voice. He said he loved me, and then he gave me an incredible hug: he enveloped me in Love; he wrapped me in Love like a warm blanket on a freezing cold night. It was such an amazing feeling, and really, there aren’t words for it.

We often say, “God is Love,” and the few times I have been so touched in this way, it has brought tears, as it did today… but they were not tears of sadness at the realization that my father was passing away, but tears of overwhelming Joy & overflowing Love. My heart was so full of Love that the extra Love came out as silent, effortless, tears, and I found myself smiling, to see my father with the Divine. I believe, and my experience has been, that God, or the Divine Presence, is Love, is Joy, is Peace… it is all those, and much more, and those were with my father, because God was with my father, when he came to say goodbye to me.

I told my dad I loved him, and always had, no matter the distance that had been between us. He asked for my forgiveness, and I told him he’d had that long ago. He said he was sorry for the past, and I said I was, too. He asked what I’d done to my shoulder, and I told him, and he said I lived in a beautiful place. I told him he was welcome anytime.

Then he scolded me a little, noticing how very ill I am, and saying I hadn’t told him just how sick I am. I asked for his help then, explaining that my work here is not finished yet.

“God is with you now,” I said, and I asked him to touch me with healing & strength. I closed my eyes, and felt him touch me, touch my heart, and my heart & soul overflowed with radiant Love & Joy again. Tears streamed down my cheeks, and I felt myself smiling what I know must have been the most transcendent smile of my life, because when my dad touched me, I felt God touch me, too.

We both said that we’d always Love each other, and that Love never dies.

I could feel him being pulled away then. It was time for him to go Home, to go with God, and I could only feel peace and joy to feel him go.

I was still filled with the “afterglow” of this experience, when, within just a minute or two, my brother called. Our father was still alive, but just barely, and my brother was going to hold the phone up to his ear as he’d said he would.

I hesitantly explained that I no longer needed to talk to our dad, as I already had, and a bit of what I had experienced. I explained that I’ve had other experiences like this, since I was a child, starting with my grandma’s passing.

Within a few minutes, my father passed away. The nurses said they’d never seen anyone go so very peacefully.

My heart aches now for my brother & sister-in-law, my niece & nephew, and all those who will be mourning his passing.

But, because he stopped by here on his way, I got a rare glimpse of the Loving Arms of the Divine that are now holding my father tight. I know that he is now wrapped in that same Love and Joy that brushed me briefly, and he is experiencing it in a much, much deeper way than I did. I cannot be sad for him.
He has gone Home.

– This post is dedicated with great Love to my nephew, Clay, Jr., and my niece, Erin, who are mourning their Pa-Pa very deeply. He will always be watching out for you, and he will never, ever, stop Loving you. Neither will your Aunt Kelly.

My Dad & I, Feb. 2006

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It seems that for us, “when it rains, it hurricanes,” as one friend put it. As most of you know, Rhiannon’s father passed away last week, and we embarked on a daring (for us) journey to Ohio, & back.

I want to thank all of you who have sent messages of love & support to Rhiannon & I, both privately and publicly. I haven’t had the energy to respond to hardly any of them, but please know how much we do appreciate them!

I know many of you have been anxious to know what happened and how we are doing.

After 6 full days & nights away, we are home from Ohio. We left Monday, the 4th, around 6PM, and arrived back Sunday, the 10th, late in the evening.

The dogs were very happy to see us. They didn’t eat the house, and in fact, had stopped eating much of anything at all…

Now…

I am, indeed, very crashed, as many of you worried about. I’m beyond exhausted and stressed out, with viruses (EBV & HSV) flaring, and in post-exertional hell. I somehow never remember quite how bad it feels, how horribly drained I can be, the weakness, the shakiness… but then, I haven’t felt this bad in a long, long time…

Rhiannon, who also has ME/CFS, MPS, and Adrenal Stress Syndrome, is also crashed. She is not as weak as I am, since she’s, thankfully, not as sick as I am. But she’s very tired, and we are both kind of dazed.

Actually, I’m more than dazed… everything that happened is kind of a blur at this point, and this week has been one of resting, trying to conserve every precious drop of energy I have. We had to make one trip out, for groceries & dog food, and I got so shaky & weak that we left before we completed our shopping.

The Journey…

Our journey to Ohio was hard on everyone, not just physically, but also emotionally and mentally, bringing up a lot of old “crap” that we found we weren’t quite done dealing with.

It was also a chance for healing old wounds, renewing bonds of Love & sisterhood, and enjoying the beautiful cliffs & woods & gardens where we stayed, with my wonderful spirit-sister, Kathy.

It was a difficult decision whether to go out at all, considering the strain this was going to put on my fragile body, and whether I could even handle it. This is the longest & farthest away from home I’ve been in almost 6 years, and my condition has gone rapidly downhill the last two years.

We debated it every day as Rhiannon’s father lingered in the in-between state, maintained on life support & unresponsive after having been hospitalized for COPD & pneumonia & then having a heart attack, with brain damage from lack of oxygen. He was 65.

As bits of news made it’s way to us, we got our packing done, and waited for Ben, Rhiannon’s more-than-boyfriend, to finish his classes, so he could do most of the driving, and be there to support Rhiannon.

When it’s difficult on a good day just to spend three hours out grocery shopping, the decision to undertake a journey like this, with a day-long drive (or 2 half-day long drives), heightened-emotions and a heck of a lot of stress thrown in on top of it, is a very serious one. As I said in a message to one friend, “we mustn’t kill Rhia’s mother getting her to her father’s funeral,” and I meant that quite literally.

Discussions were started with Rhiannons’s aunt about funeral arrangements. Rhiannon’s father, Brian, wanted to be buried on his farm, and it would have been fairly easy to do, but in the long run, not a good idea, as the farm will be sold.

Rhiannon found a township cemetary just across the road from the back side of the farm, a beautiful spot (thank you, flicker!), and expressed her desire for burial there, so she could have a place to one day bring Brian’s grandchildren. It was easy to envision this location as her father’s final resting place & a small, informal, memorial service.

There…

11 days ago we headed out, and drove part way the first day. The decision to discontinue life support was made the next day, and Rhiannon’s father died about 4 hours later, about the time we arrived at Kathy’s home & land.

I could, and will try to, write a whole blog post dedicated to the wonderful, warm & loving support with which Kathy & her partner, Constantine, received us. Kathy has been a more-than-friend, a member of my “soul family,” since I was pregnant with Rhiannon. She welcomed us into her home, and provided us with wise counsel & abundant Love when we needed it the most, for which we will be eternally grateful.

I’m pretty certain that without Kathy’s calming, soothing, presence, that I’d be in the hospital right now. Her guidance and support was essential.

Then came more difficult news. Brian’s brother had made the decision to cremate him, and they would spread his ashes on the farm at some date in the future, possibly in the fall.

Rhiannon had come out all that way expecting a funeral, or at least an informal memorial service. We had known that they were considering cremation, but it still hurt.

We made several trips to Brian’s farm, finding things going missing from one trip to the next, and the sheep, which Rhiannon had specifically asked to see, appeared to have been sold & moved the morning after we arrived there. She didn’t get to say goodbye to them, either.

It became clear that we needed to learn about how an estate is settled, how wills & probate work, which is something I’ve never before needed to know. We had a very long visit with an attorney, who is now representing Rhiannon. We believe she is the heir to the estate, or at least that’s what her father told both her & I.

Rhiannon’s aunt has been good about corresponding with me via email, and I have been trying to build some bridges there, because they are her family, and because it is clear that we are going to be working with her and Rhiannon’s uncle for some time.

Almost everything we went expecting – a memorial service, a chance for Rhiannon to see her aunt & uncle, to find some closure, didn’t happen.

But other things, important things, did.

We went because of a death, but we found a new life: a tiny black kitten, by the side of the road near Brian’s farm, with a respiratory infection & lip injury. She came running into Rhiannon’s arms.

With lots of TLC (and food), the kitten is now doing much better. Dusty, Rhiannon’s first cat, is not very welcoming, and Kodi would like to eat it, so we will see.

Kathy holding me tight just before we left for home.

The bond that existed between Kathy & I was reinforced as we spent hours talking, not so much casual “catching up,” as reconnecting, in deep conversation about matters of Life, Spirit, Love, Mother Earth, and much more. We really “see” each other. Namaste, Kathy!

Kathy saying goodbye to Rhiannon & Ben, in front of her new addition.

Rhiannon’s bond with Kathy, who was the midwife’s apprentice at her birth, and so who has known Kathy her whole life, was reaffirmed. They hadn’t seen each other in a long time. They, also, had those deep-connecting conversations. Rhia left inspired by all that Kathy has accomplished, and even more firmly seeing Kathy as her “second mom,” which makes my heart smile.

Poor Ben put up with a lot: Rhiannon & I both blowing off steam & venting, and he missed his high school graduation (that last wasn’t a big deal to him). He was a great support to both of us, and he’s a terrific “kitty-daddy!”

And back again…

We were sad to leave Kathy’s, which felt like home, but our dogs weren’t eating, and it was time.

For now…

I may be very quiet for a while, as flares can & often do last for weeks or even months. I have doctor appointments next week, and appear to have broken a tooth along the way, so there’s that to be dealt with, too.

But even if I’m quiet, I’ll still be thinking about all of you, my friends & family. Thank you again for being there for us, for your words of support & encouragement as we undertook this journey. They meant a great deal to us.

*gentle hugs*

~ Ash

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Note: This is long, but kind of has to be as it covers a lot of ground – it’s about the past, the present, how the body works, and why I’ve been so quiet.

This Halloween, there will be no chocolate for me; no Halloween goodies. An “old friend” (and I use that term very loosely) has come back to haunt me (pun intended):

When I was 14 or 15, I was into fasting, at first for the spiritual aspect of it, and then later, because I wanted to be thin like all the other girls, especially the girls in Drama, the dancers. My parents didn’t know – they were preoccupied, going through a separation and divorce. It was altogether too easy to say I’d eaten at a friend’s house, earlier, or wasn’t hungry. Some of my fasts were “only” 3 or 4 days long, but a couple were 7 days, though I usually had to drink juice, tea, or broth to fly under the parental radar.

The first hint that this was not doing good things to my growing body was during a visit to the National Mall, and there, in the shadow of the Washington Monument, on a day of blazing heat, I passed out. It was the weirdest experience. I started feeling shaky & unwell, walked a few feet to my father, and as I started to tell him, my vision faded to black from the  outside in to a pinpoint circle, and then I dropped like a rock. I came around almost immediately, lying in the grass, looking up at my parents’ concerned faces. They thought it was the heat, or dehydration. I didn’t tell them I hadn’t eaten in 3 days.

Over the next couple of years, I had trouble with spells of shakiness, dizziness, nausea, feeling disoriented & on the verge of passing out. I had trouble staying awake in some of my classes at school.

A  glucose tolerance test (drink a bottle of coke syrup, have 8 blood draws, and nearly pass out in the doctor’s office) showed I had hypoglycemia, or low blood sugar. It’s kind of like diabetes in reverse.

My body was on a roller coaster ride: when I ate sugar (even natural sugars, like those found in juice or fruit) or carb-heavy foods,  my blood sugar level first rose steeply, then, over-reacting, it was over-producing insulin, and causing my blood sugar level to drop too far, too fast.

Without enough blood sugar, or glucose,  the body can’t function – the glucose is needed for carrying oxygen in the blood, and for energy.

Fainting is the body’s defense mechanism. You hit the deck, and your head is (theoretically) level with the rest of your body, so that the available oxygen-laden blood can be sent to the brain & organs, which the  body must protect at all costs.

The treatment is really very simple & entirely diet based: elimination of all sugar and simple carbohydrates from the diet, including natural sugars.  No juice,  fruit, or even potatoes, which are easily converted to glucose by the body. Keep the intake of protein high, and eat only complex carbs, that are digested slowly, and so converted to sugar very slowly. That avoids the sudden plunges in blood sugar levels caused by the body’s release of too much insulin.

Within a couple of years, eating a reasonable diet, and getting  to a more reasonable weight, my body was able to normalize, and I wasn’t bothered by it anymore. The doctor told me to watch for the possibility of diabetes later in life, as it often occurs in those who have hypoglycemia.

I realized the hypoglycemia was back, 30 years later, a week or so ago.

I’ve been really struggling with my weight, with it being too low (something that still shocks me), for months now. It’s gotten as low as 116#, and has been hovering within a few pounds of there for months. If I’d only lost fat, it would be one thing, but I’ve lost a lot of muscle.  My arms & legs have never been this thin in my entire adult life. My ribs and shoulder blades are starkly visible.

After a lifetime of struggling to keep my weight from being too high, this has been a difficult adjustment, both physically and mentally.

The doctor has been urging me to eat high calorie foods, like nuts and avocados, and I’m under orders to add olive oil to everything I eat (for the record, olive oil in oatmeal is really not that bad).

I’m really struggling to keep my weight from going even lower. Just feeling like eating is difficult. I’ve had so many migraines, with accompanying nausea, that I have very little appetite. It’s possible that some of my meds are contributing to the lack of an appetite. It’s also possible that my level of thyroid hormone is too high, so on Thursday, as I discussed this problem with my PCP, we decided to lower it. I hope that helps.

September was spent battling a severe sinus infection, which became bronchitis severe enough I had to get a chest x-ray. I’ve never coughed up so much green mucus in my life, for weeks. It took:

  • Two antibiotics
  • Two different inhalers,
  • Three different meds for the candida that resulted from the antibiotics
  • Gallons of hot tea
  • Gallons of emergen-c
  • A bottle of Andrographis (an herbal antibiotic)
  • Half a bottle of Oil of Oregano capsules (both internally for the candida, as well as in hot hot tea I used to steam my lungs with, huddled under a towel)
  • Way too much honey, mixed into hot lemon juice with water, or just honey with lemon juice, to cut the phlegm

and weeks in bed to defeat it. And I’m still coughing a bit, still wheezing some.

There was a time there when I really wasn’t sure I was strong enough to kick it; people die from pneumonia all the time, and my body has no reserves anymore. I was worried I was going to die before Rhiannon made it to 18, and was legally an adult. It was a strange feeling. I’m certainly not afraid of dying, but I don’t want to do it until she’s of age. The weakness caused by this illness, and this weight loss, was greater than anything I’ve experienced since my year with the PICC line, when I nearly died from medication reactions.

I wrote a post called “Still, Surreal, and Chocolate” in August, about standing in the store with Rhiannon, picking out chocolate, thinking that it was okay to eat some, to help me hang on to my weight. It’s definitely a high calorie food.

When the middle of September arrived, with it’s Halloween candy everywhere, Rhiannon thought it would be good to pick up a few bags of the snack size bars, and started leaving them out on a plate for me. She’s very concerned by my weight loss, and is trying her best to fatten me up just a little, get me into the “safe and healthy” zone.

But once I started eating the chocolate treats, as well as dried papaya spears, after all the honey & lemon juice I’d gone through, I wanted more, & then more.

At this decidedly too-low weight, my metabolism is not functioning the way it should (not that it ever functions properly). I soon realized that I was craving more sweet things about an hour after the previous sweet thing, and then those all too familiar feelings from my teenage years started up – the shaking hands, the sudden weakness (as if I’m not already weak enough),  the lightheadedness.

I talked to my doctor about this on Thursday, and told her my suspicion that the hypoglycemia was back. She was unsurprised, and agreed. Thankfully, she won’t require I go through another glucose tolerance test. Hopefully, we’ve caught it early enough that I can get over it more quickly.

So there will be no Halloween candy for me this year. It’s back to the sugar-free, low-carb, low-glycemic, diet. Gluten-free. Dairy-free. Preservative- & additive-free.

Despite all those “-frees,” I’m still trying to find enough to eat to get my weight up just a bit. It’s time for things like coconut milk (high in medium-chain fatty acids, an essential nutrient), lots of nuts, brown rice pasta, oatmeal, avocados, vitamin & DHA enhanced soymilk, unsweetened granola, and lots of protein – boiled eggs being a staple at the moment. Popcorn has been sounding good a lot lately.

When all else fails, and I have not eaten enough calories for the day, we use my nightly Ambien to get me eating , as it gives me terrific munchies. If I get up after having taken it, Rhiannon shovels the food into me. I’ll eat anything in sight, and often have no memory of it.

So everyone who can, eat a sweet piece of Halloween candy for me, and send me chocolately goodness vibes.

Happy Halloween to all, and a Blessed Samhain.

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