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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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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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A post about getting through those moments you ask yourself: “What fresh hell is this?”, or beg, “Not again, please!” and, “When Food Is The Enemy”

Recently, yesterday I guess it was, but it seems eons ago, I managed to poison myself.

Not in the typical, swallow something toxic way, of course.

No, not me.

My poison?

A bowl of oatmeal. A stupid bowl of gluten-free oatmeal. A big bowl of oatmeal.

I knew almost immediately that I had made a serious error, as it first sat in my stomach like a brick, and then, the bloating and the pain and the overall “oh, crap, what fresh hell is this?” feeling came over me.

Like many with ME/CFS and Fibromyalgia, I have Leaky Gut Syndrome, which in some patients is labeled as only IBS – (Irritable Bowel Syndrome). I’ve got both labels, but today’s topic is Leaky Gut.

What that means, in very general terms, is that my intestines are far more permeable than they should be. Particles from foods I eat can enter my blood stream, and my body becomes hyper-sensitive to them. The more frequently I eat something, the more common reactions become.

For a more expanded discussion of this, see this post:
The Problem, The Plan, via Dr Z

I have quite a large number of items on “The List” of things I simply can’t eat. Oatmeal used to be on The List, but after avoiding it for a number of months, and then trying it again, it seemed to be okay.

Until yesterday. When suddenly it was not okay, and I have been enduring the misery of severe bloating (as in, looking 6 to 8 months pregnant), belly cramping, nausea, migraines, and an overwhelming toxic feeling ever since.

It is hard to define what it is to feel “toxic,” but in general, like you’ve been poisoned. Very weak, difficulty thinking, palpitations, nausea/vomiting, extreme migraines, on & on.

Note: To the family members of ME/CFS patients, I would just like to add: this, this horrifying misery, is why we don’t get excited about going out to dinner (if we’re able), or trying new foods. The tiniest bit of an offending food can lead to misery that lasts days – long after you’ve gone home.

So, what’s to be done when you’ve poisoned yourself with food?

Not much. Take a hefty dose of magnesium, which acts as a laxative, to move it along as fast as possible.

As long as it’s in your body, it’s going to be setting off your symptoms. So you need it out of there – and fast!

But mostly, you have to wait it out.

If your doctor (likely an alternative practitioner or LLMD) has indoctrinated you into the Gerson Therapy (the infamous coffee enemas), they can certainly help both move things along, as well as detox your blood.

Substituting chamomile for coffee, as explained in The Gerson Therapy, helps to calm intestinal spasms. You can also mix coffee and chamomile. Experience tells me that a slightly overly warm brew will produce better, umm, results.

For info on my own experience with the Gerson Therapy, you can see all posts tagged “Gerson,” starting with The Problem, The Plan, via Dr Z.

Breath by Breath. Moment by moment.

I wrote this to my mother earlier tonight, after two days spent complaining of being too nauseated to eat, and how awful I feel:

“Can’t think of much else right now except get through this moment, this minute, this misery. Its a thing my very ill friend, S., and I say. Just focus on this moment. Don’t think about how long the misery will last. Just get thru this one moment at a time.

“It’s how we keep from becoming another ME/CFS suicide statistic. If you think, “it will never be any better than this,” or, “this is gonna last forever,” or “I’ll never be any better than this,” or, “what’s the point, this is just gonna happen again & again,” that is the path to becoming a statistic.

“So when our heads are pounding, are bellies are churning, the pain is just so much we want to crawl right out of our skins, we say to each other, “Just get thru this moment. This one breath. Don’t think about the moments to come. Just this one moment.”

“And that is all I can do right now.”

I am very happy to report:
After my second round of coffee & chamomile today, the offending oatmeal has been well & truly expelled. I feel better already, although it will take a few days to get back to “my normal.”

Always remember: You can get through it. One breath, one moment, at a time. Just take a big deep breath… and let it go. See the pain/misery/illness/despair flow out with it. And then just take one more big breath…

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“How do you do it?” she asked. “Just how do you manage to keep it together in spite of how miserably sick you often are? It is just so hard to keep doing this, you know?”

It is a question I get asked often, and there are a number of answers.

First, a rundown of what we’re dealing with.
The common perception of someone with one of the Neuro-Immune Diseases (NID) of Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), chronic Lyme disease or other tick-borne disease (TBD), is that it can’t really be as bad as we say it is, we’re lazy, or, we’re making it all up. Or, that we’re just depressed and “need to get out more.”

Nothing could be further from the truth.

Every victim of these very real, physically devastating illnesses I know actually is quite skilled in hiding their true level of discomfort and pain from their family and friends, struggling to hold on to some semblance of normalcy in their life until it simply becomes physically impossible.

Patients with mild ME/CFS, NID, etc, can sometimes work part-time, look after their families, and have a social life.

But for severely ill patients, that is not the case. Not at all. They ever so slowly get worse, and enter the phase we call “the living death.”

A really brief “refresher course” for those not familiar with our illnesses:

  • Many cannot leave their house except for medical appointments.
  • Most spend almost all day “vertically challenged” – either in bed, on the couch, or in a recliner, too utterly exhausted to move. There have been times I’m so exhausted, I’m acutely aware of the effort it takes just to breathe.
  • Most can’t cook for themselves, and some need assistance just to go to the bathroom.
  • Pain is usually a constant, even with the best of doctors – something many are lacking.
  • Many are severely sensitive to sound & light. They may eventually wind up living (if you can call it that) from their darkened bedroom, the shades drawn, speaking and being spoken to softly.
  • Cognitive problems get worse, and short term memory problems make things very difficult. Concentration, comprehension, “word-finding,” and spelling all become issues, and the more tired you are, the more pronounced the cognitive problems.
  • Me & Cherokee, about 1988


    “The Before Times”

    Virtually every patient I know was very active in “The Before Times, ” – what we call the years before these horrible illnesses blindsided us.

    Many of us were “outdoorsy” types – campers, hikers, runners, gardeners, and a disproportionate number of us were horseback riders (perhaps – or perhaps not – because a strain of Bartonella has been found to infect horseflies and be transmissible to humans).

    We were not lazy folks, generally speaking, and we’d all love to be strong and healthy enough to take up our previous pastimes. What I wouldn’t give to be able to ride again!

    But you know, we’d really all just be happy if we could function well enough to take care of ourselves, and not be a burden on the family or friends we’ve come to rely on for everyday care.

    I’m intensely grateful for the loving care my youngest daughter, Rhiannon, gives me every day, and her partner, Ben’s care, too, as well as the support I receive from the rest of my family.

    Some of us don’t have anyone, and suffer alone, in a sheer struggle for survival. My heart goes out to them, and if you are one, I urge you to get active online in some of the forums and facebook groups, and build yourself a virtual support network.

    Grieving My Losses

    I think an important first step in dealing with these illnesses is recognizing all that they have taken from you, and grieving your losses. And then, grieving for them again, because I don’t think we ever really finish the grieving process – it’s a spiral, not a circle.

    All those things I love to do, but can’t anymore – the horseback riding, the gardening, etc – periodically come up to be acknowledged again, and I try to remember that I led a life full of unique and rare experiences before I became ill, and to be grateful for what I had, rather than regret what is lost.

    However, there are always new things to grieve, as I get sicker.

    Many of us have been avid readers, but the ability to lose ourselves in a good novel is often one of the first things to go. When you can’t remember what you read the day before, or keep track of charechters, it becomes impossible… and yet another thing lost to these illnesses.

    Recently, my migraines and light and sound sensitivity have gotten so severe that I’ve lost the ability to watch TV, even with the brightness, contrast and sound down. I’d love to go to a movie, but haven’t in a long time, and doubt I could handle one.

    So, I acknowledge the losses, but I then let them go, and embrace what I can still do.

    Blogging

    Blogging has turned out to be far, far more than I thought it would. I started blogging just to keep my family updated on what crazy health stuff was going on, but then I found my voice… and I was found by fellow patients, some of whom have become dear friends.

    Many others have emailed or messaged me telling me how a blog post has really touched them, sometimes bringing them to tears (usually the good kind), often expressing that if they’d had the ability, they could have written exactly what I had. Sometimes people have questions, and I do my best to answer them.

    Slowly, the realization has come to me that maybe this blog was the point all along, maybe it’s my “work” here on Mother Earth. I always wanted to write, but never had the time. Now, I do, and plenty of subject matter.

    There are a lot of really sick people out there, suffering from these very misunderstood illnesses, and a lot of very odd “coincidences” and connections have been made to bring some of them into my life.

    I’ve seen that my writing is making a difference, which is huge. I may spend 90% of my day in bed, but I’m still having an impact in the world, and for that, I am so very grateful.

    Nature

    Mother Nature is strong medicine, and while I used to enjoy Her during epic horsetrekking trips or camping, now my options are more limited.

    But, that doesn’t mean they aren’t there! I’m blessed to live in the mountains I’ve loved since I was a child, with amazing views right from my bed. A screened in porch with a hammock-chair is well used, many times a day for very short periods of time (that whole “vertically challenged” thing).

    From there, I can watch gorgeous sunsets, the deer amble through the “yard,” fawns in tow, observe the nesting birds, flight of the hawks, occasionally spy the fox, and watch as the seasons change. A few steps away is the container garden on our deck, with fragrant herbs and flowers.

    Friday, I watched the Blue Moon rise above The Mountain, alone in the moonlit forest, and it was wonderful, if only for a little while.

    Beauty, natural beauty, is integral to my staying sane.

    Facebook

    I have many friends on Facebook, but most importantly, a strong, loving and supportive Circle of Sisters, most of whom are also ill. We catch each other when we stumble, cheer each other on, and commiserate over the pain. It is somewhat ironic that after being pretty much a loner all my life, with few friends, I now have more friends who I deeply love than ever before.

    I am gratefulfor each and every one, and all the Love they bring into my heart and my life.

    Creativity

    It may take me a month to do something a healthy person could do in a couple hours, but it doesn’t matter. What matters is that I work at it (usually “it” is crafting a bead from fossil ivory) as I’m able, 10 minutes here and there, and when I’m done, I’ve created something beautiful.

    Gratitude

    (Bet ya saw this one coming.)
    Maintaining an attitude of gratefulness for all that I do have – a loving family; wonderful, supportive friends; a home I love in the mountains I adore; good medical care; access to the internet with all its fascinations and distractions, etc – helps tremendously. When things get rough – and they’ve been very rough lately – I try to remind myself of all the good things I have.

    Sometimes…

    …none of that is enough. Sometimes, I wilt under relentless migraines that go on for weeks at a time, or get so frustrated at my inability to accomplish even small goals that I just want to scream.

    I’m not the perfect pillar of strength that some people seem to think I am. And like most of my more seriously ill friends, I’ve watched as I’ve become more and more of a burden on the people who love me.

    Those are the days I either contact one of my spirit sisters for support, vent to my mom, relentlessly sand a bead to distract my aching brain, whine a lot, reach for a klonopin…

    …or, all of the above.

    Getting By

    As one friend and I say, those are the days we get by, one breath… one moment… one hour…at a time.

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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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    My mother said to me the other day that my brother can’t seem to wrap his mind around the concept that I’m really sick and there’s really very little that can be done about it. He seems to still think that “if I only went to better doctors or the right hospital, they could figure out what was wrong, and could fix it and I’d get well”. He has said the same thing to me. I know he means well, but he doesn’t seem to understand some things.

    We know what is wrong with me. I have (and have had for over two decades) a diagnosis that is shared with at least one million other people in the US, with an estimated additional 3 million who have it but have yet to find a doctor who can diagnose it. It is poorly understood, although there is more research being done, worldwide. We learn a little bit more, get a few more pieces to the puzzle, every year.

    Going to see another doctor would not change anything. I’ve had more than a second opinion – there have been thirds & fourths & even fifth opinions. There have been specialists from every specialty there is to look at my case & weigh in, and everyone is in agreement.

    I have been diagnosed with Chronic Fatigue Syndrome (CFS, or alternately, ME – Myalgic Encephalomyelitis, or ME/CFS), a complicated neuro-immune disease. I also have Fibromyalgia (FMS), and chronic Lyme Disease, diseases that commonly overlap with ME/CFS.

    In July of this year, a group of internationally recognized experts came together to develop a new International Consensus Criteria (ICC) for ME/CFS, which was published in the Journal of Internal Medicine. I’m attaching it here in case you’d like to read it – this is the ICC.

    First, a note from the ICC about the name issue:

    The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

    Here’s a taste of what they have to say about it:

    Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS)  and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.

    I more than meet the ICC for ME, which require the patient to have symptoms from several categories, and every possible other cause of my illness has been tested for repeatedly. This is what is wrong, and why I’m still sick & getting sicker all the time. ME/CFS is a progressive illness.

    I have seen:

    • Three Primary Care Providers (at least)
    • Two Rheumatologists plus the Rheumatology Department at Ohio University Medical School
    • An Internal Medicine Specialist
    • An Infectious Disease Specialist
    • An Endocrinologist
    • Two Gastrointestinal Specialists
    • Two Neurologists
    • A Cardiologist
    • An Ear, Nose & Throat Specialist
    • And one literally world-renowned Pain Management Specialist

    I have had every test, every lab (and as the Labcorp tech put it the other day, my doctor orders tests that don’t exist – they do, but only thru speciality labs), CT’s, MRI’s, EEG’s,  EKG’s, a sleep study, cardiac studies (at none other than NIH), and another cardiac study at Johns Hopkins.

    I have over 1,000 pages of medical records & lab results, all of which point to my having as “classic” a case of ME/CFS, FMS, and chronic Lyme, as a person can have. As a result of those, I also have Irritable Bowel Syndrome, Migraines, Hypothyroidism, Neurally Mediated Hypotension, Myofascial Pain Syndrome, and Inflammatory Reactive Arthritis.

    In other words, I am a “typical” late stage ME/CFS patient.

    It is believed there may be a number of different triggers for ME/CFS, which set off a chain of events in the body, similar to a cascading system failure in a computer. Once started, it’s difficult to stop. Very few people recover completely, and if they do, it’s usually within the first few years.

    This has also been called “Post Viral Syndrome.” It is fairly common in patients recovering from mono, which is caused by Epstein-Barr Virus (EBV) – they simply never get over it. Having ME/CFS is like having a slowly worsening case of mono that never ends, and it expands to affect multiple body systems. Most ME/CFS patients have very high levels of antibodies to infections such as EBV and members of the herpes family, and I am typical in that regard – my EBV, HHV-2, HHV-6, Human Parvovirus B-19, and others are off the charts.

    My first diagnoses with “CFS/FMS” was almost 20 years ago. At the time, the illness was fairly mild, relapsing & remitting episodes of fatigue, severe headaches which lasted days & I initially attributed to recurrent sinus infections, and some sleep issues. I had good weeks & bad weeks, and during the good weeks, it didn’t really seem like much was wrong. I “pushed through” the bad weeks because I had to – something most patients do, but unfortunately for us, those who push through the longest & the hardest are the ones who wind up the sickest.

    In late 1998, I seemed to get the flu, except it never left. The headaches were constant, and after three rounds of antibiotics without improvement, with incapacitating exhaustion, I and my doctors realized that something was wrong beyond sinus infections. That is when the formal diagnosis of “CFS/FMS” first shows up in my medical records.

    As the years have passed, it has slowly gotten worse. We have tried (and are still trying) every medication possible, as well as alternative therapies. I follow the clinical trials that are ongoing, and my doctor is more than willing to give me my own trial of medications that might help. Sometimes they do, and sometimes they don’t.

    I worked too long. I should have stopped in 2004, when my rheumatologist told me to. But I’d just bought this house, and had a thriving business, so with the “help” of stimulant medications, I pushed onward, pushed myself beyond what you would believe, to work a few more years. But we know now that it’s the patients who push the hardest who get hit the hardest, who go downhill the quickest.

    Now, I am primarily housebound, if not bedbound. Going out at all is very hard.

    I have incredible exhaustion which is beyond your wildest nightmares, and which gets worse after any exertion, whether physical or mental, and can be worse for days, weeks, months, etc. This has it’s own name, and is one of the defining symptoms of ME/CFS: Post-Exertional Malaise (PEM).

    As is typical, I have severe headaches, which are accompanied by intense sensitivity to light & sound. There are some patients in whom this gets so bad that they must move to an isolated area, and spend their lives in silence & the dark, not even able to speak above a whisper.

    I have pain, in so many places, a generalized ache all over my body, but also knots in the muscles and the fascia (the covering of the muscles), and also osteochondroitis (inflammation & pain in the spaces between my ribs & breastbone). The pain is not helped by tylenol or advil, it takes the strong stuff – opiates – to dent it at all. There is never a time without pain. It’s a matter of degrees.

    I have constant gut issues, commonly called Irritable Bowel Syndrome, but it goes beyond that. I have Leaky Gut Syndrome, where particles from food I eat leaks into the bloodstream. Since it doesn’t belong there, my body develops antibodies & sensitivities to it. It has reduced the number of foods I can eat tremendously, and what I do eat often causes bloating & cramps.

    There is more, but I don’t think I need to go into it any further. Hopefully, you are finally getting the idea that it’s not a matter of finding the right doctor who will magically get me well.

    I will continue to watch the clinical trials that are ongoing, and continue to hope that there will be a breakthru. I’ll also continue to try the complementary therapies my rheumatologist thinks might help.

    But seeing another doctor, getting another opinion, that’s really just not needed. Not at all. And besides, I can’t travel anymore. That’s out of reach. I’m glad we traveled and did cruises as long as I was able to.  I will forever cherish the memories of Hawaii, Alaska, the Caribbean, and the trip to the UK & Wales I did right before it got severe.

    We know the enemy, we know it’s many names – CFS, ME, FMS, Lyme.

    But what no one, anywhere, knows is how to cure it.

    Maybe, one day, they will.

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