Refusing To Hide

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We had an ongoing joke in my mother’s home, “That Doesn’t Count”.

Mom’s COPD was first diagnosed about 1988, and from that point onward, insurance coverage got harder and harder to obtain for the use of the benefits she was paying for as the health records became digitalized, and could be data-mined to blame her for her illness and deny her coverage.  Profit above the concept behind buying insurance to assist if something goes wrong and life hands you a rainy day, season or life.

Like Leonard Nimoy, Mom was a smoker, and so there was lots of shame and self-recriminations because she found it impossible to beat her addiction. Similar to Daisy Gamble in the film, “On a Clear Day”, she tried hypnosis and many other alternative medicine therapies but nothing worked.   Smoking was her go-to habit that she just couldn’t quit.

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While my sister and brother harped on her to stop smoking, I knew the truth.  It was too late, and stopping her 1 addictive joy wouldn’t change anything.  They didn’t or couldn’t realize how much help she needed in the home.  Stairs were off limits.  Yet the washer and clothes dryer were in the basement.  Up and down an exhausting set of stairs.  If she didn’t do her own clothes, no one else living in town would.  I knew, though.  When I challenged her on the exhausting realities of her weekly / monthly / quarterly routine for getting things done and the physical barriers she faced, I’d get her standard response, “Stairs?  Oh, that doesn’t count.”

Eventually, I talked her into selling her home and moving into a condo to reduce the amount of space she had to maintain, so that she could maintain her independence as her world got smaller and smaller as the disease progressed.  I flew back from CA five times in a year to help her pack up her home and sort through her possessions to reduce the bulk.  Meanwhile, my brother and sister lived withn 5 miles of her home and were oblivious about the reality of her abilities and how hard she worked to hide the truth.

I guess my early years, spent mostly bedridden, gave me a more realistic insight into her situation and how best to support her decisions.

To illustrate… When I was well enough to be allowed out of bed and off the leash, nothing was going to stop me experiencng all that life had to offer.  Climbing trees.  Horseback riding.  Jumping off the swingset at the height of the swing.

Despite cutting off my pointer finger (successfully reattached), head wounds, ankle injury bike riding, leg impalement, being tossed off a horse, being dragged downhill (a chest-first belly-flop in a bikini when a rope swing over the lake went horribly wrong because I just didn’t have strength in my arms due to my chest muscles being cut – again – for yet another repairative surgery), etc., etc., etc., I wasn’t going to be contained ‘for my own good”.  So, I had a clear and realistic insight as to the source of her denial, and refusal to ask for help.  If you ask for help, you are less.  Less capable, less autonomous, less (whatever).  By asking for help, you are making yourself vulnerable to someone else’s judgement.  If you were in need, after all, shouldn’t they just notice, and volunteer?  So many crazy, conflicting emotions and cultural messages to wade through.  So, I learned to bull my way through things from a wonderful woman and a perfect example for, “Do what I say, not what I do”.

Despite hearing my Mother’s voice any time I was allowed off the leash,

“J______, you WALK !”

being bawled at me across woods and playgrounds, I ignored her fears or her good intentions and did what I wanted, regardless of the risk, regardless of my parent’s financial worries for another medical bill, regardless of any measure of good sense.  I was alive, and I would worry about the repercussions tomorrow for today’s choices.

Despite it all, however, I understood very intimately the fight to live and do what you choose, just because you’re not dead yet.  Not merely “still alive”, but more an acknowledgement that no one ever gets enough time in life, so it’s up to us to seize life with both hands because only we know what makes life worthwhile to us on a personal basis vs. an endurance of tedium and restrictions to ensure we keep on living while sucking the joy out of whatever life we have left.  Or, heaven forbid, to be beholden for someon else, no matter how loving, expecting gratitude for sitting in judgement on your health circumstances.

So, it’s incredibly hard for me to be lectured in all the COPD literature about stopping smoking.

I’ve never smoked.  But, I do know, intimately, how pointless it is to lecture someone about something they already know. Especially when it involves an addiction.

When your life is built upon beating the odds, however, it’s important to focus on what you can do, vs. what you can’t do, or shouldn’t do, as part of making the best use of every minute we have on this earth.  Stuff has to get done.  Choices have to be made (as there’s never enough time and energy to do everything we wish to accomplish).

As her energy waned, I saw my mother shamed, under the presumption that her smoking caused her COPD, and I live in contrast to her particular situation.   Kind of a “tough love” version of ignoring a handicap or a frailty because “you only have yourself to blame”.

Ridiculous thinking – to blame the victim, however, I grew up with a variation on that same shame stigma because of my frailties – even though I had done nothing to earn such a difficult journey.

Truly, there are many folks who believe that suffering must be penance for some yet to be discovered character flaw, or as a penance from a prior lifetime of evilness.  Crazy, but that’s just one of the many unspoken messages I picked up from an indifferent culture who wanted me to either be miraculously cured, or hurry up and die.  Regardless of my reality, I was a waste of precious resources, so I needed to suck it up and move along.

To quote:  “There were plenty of people who had it worse than me.”  (That thinking will be the subject of another blog).

If I was asking for less hassle because I was ill, I must have done something to turn God’s love and healing light from me.  Society had no time or interest in the reality of my life as a survivor, flaws and all.  They wanted hale and hearty, or they wanted me gone so that I wouldn’t be taking up space, possibly “contaminating” the healthy folks.

When comparing Mom’s illness journey and mine for dealing with COPD, there appeared to be only 1 visible difference:  I had birth defects; I have a partial excuse.

Due to my first-discovered birth defect (there were more) I had a pectus excavatum (rib cage deformity; fixed multiple times before I said, “enough”), and I, too, grew up in a household where second hand smoke was the norm (just as she did for the whole smoking issue).  I therefore submit that my COPD is through no fault of my own.  There was nothing I could have done differently in my birth or formative years, so I refuse to feel shame.  If Mom & Dad had never smoked, the bad lungs gene was already in our family tree, so she might also have ended up with COPD regardless.  That’s the fickle finger of fate that I rail against.  Why is one person’s life so blessed and another’s so challenged?  No answers here, but it’s just something I think about for evolutionary variants as I see so many people struggling to survive, to remain independent, to be happy despite their realities.

I just wish I could have gotten it through to my Mother that shame doesn’t help and that sh*t happens, despite our best intentions.  She grew up in a house of smoking parents.  Her siblings all smoked.  1 sister has already passed due to COPD and other health complications.  The other sister is gravely ill with COPD, and other health complications, despite ceasing smoking almost 20 years prior to her diagnosis.

Life is what you make it, and how you deal with the spanner thrown into the works is just another challenge to be faced down and defeated or endured.  Shame has no place in my story, so I will talk loudly and without embarassment about my challenges and how I’ve adapted and continue to evolve to pursue life without regrets over things whch are out of my control for changing.

If we are going to insist that people live, that they use whatever talents some nameless, faceless, yet-to-be-proven higher power has bestowed upon them, then we must accept that bumps, bruises and damage happens and is a normal part of the journey through life as less than perfect beings.  Recriminations about things that can’t be changed is a pointless exercise.  No one can live in a cage, regardless of how pretty, well padded or gilded.  Sh*t happens.

Magic Beans?

Magic Bean Hand

In my efforts to ensure that I’m not too old to benefit from cutting edge technologies, I do my own research.  Even if my health insurance company won’t pay for a treatment (heck, they called a CT scan “experimental” on a recent invoice), it doesn’t mean that I shouldn’t consider alternative medicine.

While I’d love to be wealthy and able to choose my line of work without consideration of the ultimate pay rate, that’s just not my reality.  Not being paid for my disability through continuation of my salary (as originally promised in the materials and procedural outline provided by my company), means that things got very real when they (finally) approved me for unpaid disability (Family Medical Leave Act), while denying the fact that my doctor has declared that it’s time for me to stop working.  I’m now under what remains of a 12-week job protection deadline, where I’ll be booted to the curb and terminated sometime after December 31st, and the ticking of that clock is getting louder every day.  What’s my backup plan if it turns out that I myst return to some sort of employment to keep the wolf from the door?  No idea, but there’s a bookstore locally that I’d apply to while looking for receptionist-type jobs.

I’ve launched an ERISA inquiry through my employer as of Monday morning, and as of today I stepped up the heat to remind them that they owe me an answer – not the insurance company.  My employer will be on the hook for any benefits owed to me, should it be determined that I was treated improperly due to a conflict of interest for preserving profits (vs. caring for their patients with paid up benefit entitlements).  Of course, I could be dead by the time that they make up their minds, so I’m also looking at Plan B for pursuing Stem Cell therapy for my breathing difficulties.  If I have to work, I need to explore every option to improve my erroded endurance.

Magical

The steam cell theory seems like it may be worthwhile pursuing, however, they have only treated 1,000 patients since launching their operation, and all track record information for how effective the treatment was is empirical in nature, and less than a year old.  Magic Bean territory, for sure.

I found a few more companies providing similar services – one right here in Silicon Valley – however, since their efforts are geared toward the cosmetic industry in the Silicon Valley operation, I may do better considering the option out of Arizona.  Maybe.  I’m very biased against narcissism being the core treatment philosophy for the doctors providing a medical service to me.  Regardless of how wonderful their credentials appear to be, if they spend days injecting lips and moving around fat for appearances sake?  They just don’t feel credible with regard to their core vales for truly helping people on a core level (yes, I’m very judgy) and so do not appear to be the right doctor for me.  All this, before I’ve met a single person from that office.  See?  Judgy.

The least expensive option for treatment is $7,500 – not out of reach – but certainly not chump change.   It remains to be seen if my doctor will agree that the treatment is worth pursuing, or if I’d be buying some magic beans in the hope of restoring my life and energy level to normal (for me) so that I don’t have to keep on worrying about money 10-15 years sooner than society says I’m entitled to stop working…

What you want to hear

Home is where – part II

Fix yourself

As I wrote in an earlier post, “Home is where you go…”, I’ve been trying to help out a senior friend of mine with regard to getting prepared to move into her own mobile home, courtesy of her family.

However, as with all events lately, there’s been a spanner in the works.

C’s older sister has mild dementia.  It means that she doesn’t remember much for new memories in the short term.  She repeats a lot, but generally knows who people are, has happy and sad days, and is doing ok as long as she’s living in a protected and calm environment.  However, the older sister, N, is married to a Doctor (yes, capital “D” for his eminence), who loves to stir up drama.

Unfortunately, C chose to go to N and D for help in having a temporary place to live, and from there it’s evolved into the nieces wanting to get C set up with a mobile home, because D was all overwhelmed and bezerk, and then D becoming a megalomaniac over C’s living arrangements, financial issues, etc., etc., etc.  Background:  D’s life is messed up because his wife isn’t waiting on him hand and foot anymore (he’s in his late 70’s, so you have an idea, I’m sure, of the kind of housewife he’s always enjoyed, the the spoiling he was used to. etc.,), before N began to be effected by dementia.

So, while C was very surprised and pleased by the offer to get her a mobile home, that was never her request and never her goal.  It was something offered to her by her nieces.  And, everything was looking well until D lost his mind over how bad “C’s” life choices had been, her dependence, etc.  All for the cost of a home that’s less expensive than many car loans, and which everyone in this picture can afford.

C was told that the home had been purchased, but then was subsequently informed that the nieces were taking over her finances.  Immediate red flag.  Especially since it hadn’t been discussed prior to the purchase of the home.  (Which, update, it now turns out was NEVER purchased.  Red flag # 2).

Chris s new home 12NOV15

C persevered, though, as she was under an eviction notice from the landlord / friend, and the time limit was running out.  Cut to the chase in this drama, they picked up all of C’s large items last Saturday after some drama with the landlord (she didn’t want anyone in her house), and the nieces drove away with the bulk of C’s belongings.

Sunday night, after the belongings removal, however, one of the nieces then informed C that she was “too handicapped” (whatever that means) to take care of herself, and that they were moving her into assisted living instead of the mobile home as discussed and agreed upon.

So now, C’s having a meltdown.  Decisions are being made without her involvement, her money is being allocated (verbally) for expenditure without her consent, and her monthly costs have gone from an estimate of $800 (both mortgage and land use fees) to $1,100 and living under “supervision”.  No discussion, no negotiation; just a done deal.  A deal that she didn’t sign up to in concept or in actuality.

Crazy.

So, I talked my friend off the ledge momentarily, but (at the time of the first draft of this blog) we’re still dealing with the reality of trying to figure out if the unit has been purchased (leaving me to deal with her family and finances), or if we can go and see the unit and put down the downpayment and related credit check so that I can purchase it and live there short-term with her, while things settle down for both of us.

Yes, it would reduce my expenses tremendously to spilt such cheap rent with another person.  But, it would also mean that I’d be moving 2 hours away from where I’m currently living in order to have a roof over my head while working out the details of the ultimate ownership unit.

I’d have a roommate, and while that’s not an ideal situation long-term, it would be a workable solution for the both of us to reduce our expenses short-term, while we figure out what’s happening with my disability, as well as getting C stablized in a place of her own.  I can always move out later, leaving her to assume the mortgage, after she gets her own situation straightened out.  Or, I can remain the landlord and then have a quitclaim deed signed so that the property evolves to her in the event of my passing.

Lots to think about, but since I was already on this road anyway, earlier this year, it’s something to consider while trying to determine if the deal is doable.  And, if I can get approved for this new loan knowing that my disability status is still up in the air.

This will also give us time to lock in the place while seeing if the nieces will calm down and co-sign as long as I’m there in the interim, and before my friend gets her knee replacement surgery.  Whatever, we’ll figure out something, if the Gods are willing and the bank agrees…

I am just a really liberated woman, and get aggravated at some man taking down my friend because her situation is not to his liking.  My friend being homeless is not to my liking, but that’s life.  We all have to do things that we might not otherwise consider.

Dignity vs. Dogma

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*** IMMEDIATE DISCLAIMER ***

The contents of this next blog represent an esoteric series of thoughts as well as an opportunity for discussion of the recently passed “Death With Dignity” law in California, and in no way represent any kind of suicidal feelings from me.  It’s a sensitive topic, and like all sensitive topics the context should be able to be discussed without anyone freaking out and worrying that my belief in euthanasia means I’m suicidal.  If I write something in this blog that triggers that kind of concern within yourself, please re-read this disclaimer.  Thank you.

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Heather Parrie defined the above suicidal / depression survival tattoo’s meaning as follows from a Huffington Post article earlier this year:

“A semicolon is a spot in a sentance where an author has an option to stop, but chooses not to.”

A lot of people appear to be running with that concept this year, choosing to brand themselves with a semicolon as a reminder of their own strength, and their decision to persevere.  I applaud them for opening up the door to the conversation as we have an unworkable system, the denial of death as a part of life.

Unfortunately, there is no similar tattoo that one can carve into their skin which illustrates an equally strong feeling or committment to support their belief in euthanasia.  When it’s time.  Whatever the heck that means -“When it’s time.”  Who the heck knows when it’s time before the event, who would not immediately be accused of being suicidal?

Euthanasia cloud. Image by fotolia.com.

There is such a swirl of emotions around the cloud of the euthanasia concept, that I went looking for those tattoos.  Let me assure you, I would not last through the engraving process of a single letter, never mind front and back stensils of my preferences in an entire sentence.  If someone wants to go enough to get a tattoo, IMHO they have clearly given the topic some extended thought.

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Ouchie !

Does my fear of unnecessary pain mean that I’m not an ardent (enough) believer in the right to end one’s own suffering?  No, it just means that I hate needles.  To illustrate, I had some bloodwork done this past weekend, and it’s now 4 days later and I’m still carrying around the battle scars from that simple, routine procedure.

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The bruising is fading, but the image above is symptomatic and very illustrative of one’s body being unable to tolerate intrusions well and bounce back without pain from what should otherwise be a routine procedure (giving blood) on a healthy body.

My body isn’t happy most days, but I can hide the battle scars under clothing, our last refuge from prying eyes, and so it makes me wonder where best to install an “I choose euthanasia” tattoo on my body.

If I were to follow the battle lines of my bruising, the tattoo would be on the back of my hand – the most likely place they would be able to insert a needle to either take blood or host an IV treatment of some sort.

If I were to follow the logic that my torso would be involved, I’d be tattooing both my back and front of my chest. However, that’s just too ugly for me.  Nevermind likely to be painful to endure during the inscription.  So, I went looking for a bracelet, and here’s what I found:

image Along with image

personally, though, I’m not willing to put on such a bracelet yet, as there is a lot more to the living will / medical care directives beyond a 1-size-fits-all DNR bracelet or tattoo.

If I’m unconscious from a fall or a car accident, I’d want to have the proper medical treatment provided to get me back up on my feet.   …The key concept being the fact that I’d be restored to independence and enjoy some quality of life.

Unfortunately, people don’t seem to want to think through difficult concepts in this world, and just want the quick answers.  DNR bracelet = withhold care / let me die, vs. the living will setting out the standards of my care, and under what circumstances the Death With Dignity decision should be triggered.

I went through this whole debate on behalf of my mother when her COPD had taken a turn for the worse and she was found unconscious in her home by my baby sister.  Transported to the hospital, ignored by her primary care physician, Mom was left in limbo for 9 days in the hospital, until I was finally advised to fly home because the nurses feared she wouldn’t make it through the night.

Upon arrival, questions asked of my big brother on the way home from the airport got nonsensical responses because no one knew, or wanted to know, what was going on with her health.  Because she was a smoker, they’d written her off as slowly killing herself, vs. having the difficult conversations necessary to understand her quality of life and what she did or didn’t want for her end of life options.

Conversations with my baby sister were equally painful, once I realized that this was just another chapter in symptoms management,  and that hospice should be called vs. leaving her to waste away in the hospital until she died of neglect from starvation.  Accused of cruelly “forcing” my mother to live by bringing her home under hospice care, I had to provide both my siblings and their families a copy of Mom’s Living Will, and demand that they read the document and show me any other options open to us as the folks charged with carrying out her final wishes.

Death and dealing with terminal illnesses isn’t for wimps. Respecting someone’s Living Will is critcal for understanding what their flavor of euthanasia and death with dignity involves.

So, I kept on looking and found another euthanasia-supportive bracelet which includes either a copy of one’s healthcare directive and living will, or sends the emergency response team to the internet to download and read it for themselves.  Think anyone will actually bother to read the document?

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I think I’m goung to have to make a custom bracelet which says, “Living Will – no ventilator life support” vs. the 1-size-fits-most DNR that normally accompanies such thinking.  Or, I’ll be far enough along in my disability journey that I won’t care about the whole DNR issue because I’ll have run out of options which allow me to continue to pay for my own preferences with regard to living in peace.

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Want to read Heather’s article?  Click here.

Foolish Choices

Internet Librarian

Alternative Medicine = Foolish Choices according to generally accepted western medical practice standards.  Granted, the insurance company won’t pay for the allowed standards of care, but heaven forbid that one try alternative medicines as a way to ease symptoms of a chronic condition.

Largely self-educated when it comes to my birth defects and self-care requirements, I’m also a tight-fisted Yankee who won’t spend outlandish sums of money on routine care if it’s not going to change the status quo.

I saw what the pursuit of “normalcy” did to my parents finances, and the toll my expenses ultimately took on their marriage.

After my parents separated and divorced, it was up to me to stop my mother’s continued ill-advised spending on my health, and to have the deep, middle of the night, soul-searching conversations about managing expectations and dealing with a tight if not impossible budget.

So, it was with that point of reference that I moved to California in 1985, and watched my formerly-available coverage dry up before HIPPA and as digital file sharing and data mining of information began and became the norm about 1985 – 1992.

“Wall Street”, a film about corporate greed, was released in 1987, and it dealt with how to glorify corporate greed and justify rapacious profits without delivering anything in exchange.  That’s my point of reference when dealing with healthcare insurance companies, which are a bureaucratic nightmare.

By 1997, the insurance industry was coming under scrutiny for its own rapacious practices, and films like “The Rainmaker” dealt with how health insurance firms are designed to deny benefits to people until they give up and go away, or die for lack of care.

Into that denial of care scenario comes me, pre-existing health conditions rampant, who uses as many alternative medicine, palliative care options as possible to keep moving and functioning, with what amounts to one hand being tied behind my back.  I just don’t have the patience to debate medical options with a bunch of idiots whose goal is to get to “denied” as fast as possible, regardless of whether or not your care should be covered under the terms of the medical plan.  You know – the plan you and your employer pay into every month.

I’ve gotten a lot more years on this earth than anyone expected, however, the health care / benefits system isn’t set up to handle a chronically ill patient who doesn’t spend all her spare time in the emergency room, running up medical expenses and co-pays that would break any normal budget.

Instead, as my doctor and I have agreed that it’s time for me to stop working as a safety issue, the insurance company suddenly rears up and demands I keep on working because I don’t have a list of medical expenses a mile long proving that I’m sick.

And, this is from the same insurance company that denied my CT scan as “experimental”, before they finally paid for that treatment 4+ months later.

So, as it’s COPD Awareness month, I’m busy studying up on alternative medicines (and looking for a new way to raise the headboard of my bed off the floor by 3-4 inches safely to ease my breathing while I sleep) while also trying to compose a letter to explain my medical situation to insurance people who don’t care, and who won’t read what I write.  All in the hope that it will change their minds and enable them to grant me my disability benefits.  Benefits that I’ve paid for, and which the theory behind Obamacare would seem to grant me in exchange for such a payment…  Seems like a hopeless case, and cause, but I’m dedicated to trying to achieve 1 impossible thing a week, and that’s my new mission.

Crazy? Desperate?

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So, I started looking at alternative therapies this week to have a stem cell infusion into my lungs to see if the technology is hokum or a potentially under-utilized option in a cutting-edge field.

Stem cell research is largely banned by the US government due to the whole fetal tissue / abortion drama, but I’ve come across a couple of firms who are pursuing this option in Southern California and in Arizona.  One firm’s treatment will cost $7,500 (initial discussions) and the other firm’s treatment choice will cost $13,500.

So, I’ll be doing a webinar next week to listen to an indepth conversation on the theory, and how it all works.  And, I’ll be posting the information on line via facebook to get some feedback from other viewpoints about how the procedure works.

Still struggling with whether or not to tell this to my employer’s insurance company as part of my appeal for benefits that my employee handbook says I should be earning while out on disability, but still on the fence for all of that.  The biggest thing for me is to get this info in front of my regular doctor during our next appointment  so that we can review the proposed technology, just like we did for lung ablations and his favorite, a lung transplant.

Wish me luck !

Home is where you go

…and they have to take you in.

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Blew two days this week sitting and breathing, trying to get up and get moving, but not able to get out of my own way.  Monday was easy to understand, as it was raining (our first big storm of the season), so I wasn’t going anywhere.

Wednesday didn’t make any sense at all, other than it was fallout from the nerves related to the talk therapy session.

Yesterday, however, I spent the day running around with my senior friend trying to get her license re-issued since she will be buying a mobile home in Sacramento, and will need to be signing papers.  Or, so we thought until yesterday.

Unfortunately, she has zero survival instinct for taking care of herself vs. spending thousands of dollars on a lost cause (an older pet with unstable diabetes, whose treatments left her further impoverished, and who had to be put down a year ago due to illness).

So, it was a landmine of diplomacy conversations yesterday as she was weighing her options and trying to come to terms with the fact that she’s going to have to give up control of her finances if her family is going to set her up in a home of her own.

Luckily, we seemed to get through everything reasonably well, and the mobile home has been purchased.

C is embarassed for everyone to be judging her and the decisions she’s made to get her to the point where she’s at right now, but the upshot is that she’s coming to terms with the fact that she’s just not managing well and has nothing to lose by having what amounts to a financial “guardianship” so that she’s not ending up homeless and on the street.

We talked about how to approach her niece (who will be handling her funds) and asking for a walking around “allowance” of $5 a day – $35 a week – so that she’s not feeling completely strapped at giving up control.  We talked about the fact that she’s not doing well with seeing what’s directly in front of her face (she lost and found her replacement wallet and phone again yesterday), and accepting the fact that someone else handling her money while moving her into a mobile home of her own may turn out to be wonderful.

C showed me the pictures of the unit, and it looks bright and airy and clean.  It will allow her to keep both of her remaining dogs with her.  And, she will also have a home with its own washer and dryer.  Bonus !

Losing control of chaos is very scary for C, but she’s sucking it up and moving forward with this plan.  I am hopeful that it will all work out, and that no amount of unrealistic demands are going to screw the pooch for getting her out of her current living situation and moved into a fresh start.  “Home is where you go and they have to take you in”, as the quote goes.  Hopefully, this will all be for the best.

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Salem, MA, port.  Harbor photo by a cousin.