Publishing ideas

 

Goals for rebuilding

As I’m coming up to the one year mark for being in the fight of my life, I’m looking back on some of my older blogs and wondering if there is a book in my story for dealing with chronic illness and accepting what cannot be beaten.

I’ve found that there are a number of resources out on the web, particularly TCK Publishing.com that claim that one can turn their writing into a published book on Kindle and in hardcopy format.

Found this particular page very helpful for outlining the “getting started” process now that I’ve got a years worth of writing under my belt:

. http://www.tckpublishing.com/how-to-turn-a-blog-into-a-book/

or:

. http://www.writersdigest.com/online-editor/5-ways-to-turn-your-blog-into-a-book-writing-machine

Since June is “National Blogging” month, and it’s about to come to a close, I want to take a moment to look back on what I’ve managed to accomplish in the past year, despite being frustrated beyond belief.  This blogging effort has enabled me to keep my sanity when otherwise not able to keep it together.  Learn more about National Blogging month here:

http://howtoblogabook.com/category/national-book-blogging-month/

It’s too soon to be finalizing plans for 2016, but I will hope to be able to finish my home purchasing / reorganization efforts and possibly attend the September 10th Writing Workshop in San Francisco:

https://writingworkshopsanfrancisco.com

to learn how to get published, or think about doing it later in the year in Las Vegas, when things are more settled and I have to go check on my aunt:

https://lasvegaswritingworkshop.com

For now, I have the analytics from this site which show my high and low points for wellness and blogging, and I can use that tool to measure whether or not I have what it takes to possibly pursue this goal.

Analytics

If nothing else, attending one of these events appears to be a relatively low cost (when compared to flying in a helicopter or seeing another show) and it’s a good goal to have – attending a writing conference and see if it may have a place in my future.  If I don’t make it for 2016, there’s always 2017 to try again.

Teary. Frustrated. Resilient.

Trying my hardest

 

I may be self-analyzing too much, but I’ve noticed my frustration level and temper getting out of control much faster as my journey through disability progresses.

Maybe it’s the fact that I don’t have the daily diplomacy challenges that I used to have to force me to exercise control when frustrated.

Maybe it’s the fact that I don’t have the daily mental challenges for juggling complex contract negotiations that leaves me so often frustrated when having to be resilient and handle what many people would think are routine tasks (such as buying a house).  The otherwise normal tasks now appear to be way too complex for me to ever want to have to deal with them (and I never was much for bureaucracy and needless gibberish in juggling finances, insurance or life in the first place).

Not sure what’s going on, but I hate the fact that we have Alzheimers in the family, and COPD, and I spend my limited “up time” worried that my mental capabilities are slipping as my oxygen levels drop.

Blue Angry Emoji

Feeling my face flush with anger, and my heart rate increase, and the tears threaten as I’m trying to comprehend complex tasks and feeling myself driven to tears of frustration really makes me aware of the toll the disease is taking on my coping abilities.  I hate my new flash point for anger erupting when I used to be able to control the angry blue meanie.

This morning, I was all set to sign my paperwork for the 401K loan, and found out that my moment of brilliance (remembering the after-tax ROTH IRA value from last years’ attempt at $9,7xx), was not reflected in the extraction of pre-tax 401K dollars they were using to fund my hardship withdrawal.  (Yay, one point for me !)

As I chased this through the various 401K agency channels, they agreed that they weren’t touching the IRA account and taking from only the pre-tax 401K accounts (Yay, I haven’t lost it completely!), but they couldn’t simply inform me that part of that money was also allocated to the $16k personal loan that hasn’t yet been repaid to my account.

It took 3 different agents to get to the point where someone could look at my account and TELL ME that part of the money (the missing $2k) was being held against the personal loan’s outstanding, unpaid value, and was not a loss in value within my account.

And, no, they could not re-allocate the funds backing the $16k loan to deal with the cashout for the hardship withdrawal.

Miss my mind the most

0 to 60 in terms of frustration and tears, which could have been resolved if the first guy had simply explained it directly – or, if I was smart enough to realize that the “apportioned” balance of my accounts applied to the loan, too.

Once the 3rd person was able to explain what the source of the missing funds were, it all made sense and the tears started.

I really miss who I used to be.

Resilient.

This dropping back into tears of frustration reminds me of my childhood, and I really don’t want to go there as the disability progresses.

Frustrated girl

Trying to remain positive as I prepare to (hopefully) qualify for funding and move into my new home within the next 6-8 weeks or so.

Losing $2,000 in income a month overnight has really escalated the necessity to resolve this matter NOW vs. waiting for the lawsuit against my employer (for matching salary benefits I paid into in the event of being put on disability).  I don’t want to live in the boonies of CA, so I just have to think positively and remind myself that I have to get over myself.

Until I reach that point, I’m 8 pounds heavier than I prefer to be (208 is for the birds on a 5’5″ frame), but I’m hoping that I’ll work it off as I get my life more into my own control and get out of my own way.

Until I reach that point, screw the diabetes and hand over the chocolate !

Chocolate vs Control

Oh, and watch lots of silly movies and listen to musicals to get over myself.  Whatever it takes to get through this fight to retain my independence.

Less Frustration

Resilient.

 

Packing

Old Lady

Well, I’ve hit a snafu in that the mortgage company who gave me the pre-approval with a State Disability income of $4,408 per month (or, $1,102 per week unless it’s a 5-week month), has now decided to deny my loan application once my income for Federal Social Security / Disability was determined to be $2,408 per month.

Since my rent is $1,735 per month as of August 1st, I’m still packing as I have to move SOMEWHERE to reduce my cost of living…

But, I’m struggling with making an offer to the Seller to buy their mobile home while I can’t provide documented proof from my employer of a guaranteed supplemental income each month.

Now, this isn’t a pity party.  This is just another reality for dealing with the high cost of getting ill in this country.  And, with not wanting to have to move to the boonies (2-3 hours away from everyone and everything important in my life) to reduce my monthly rent or mortgage costs down to $735 or so per month.

I really worry about losing my ability to drive.

I really worry about losing contact with my friends if I try and live further away.

I know I’m lazy, and understand “situational” friendships where you love folks, and you go out of your way for them, but once you’re further away than 30 minutes or so, the friendship falls by the wayside as they are just outside of your “routine” of life.

I could talk to the roomie and see about putting 90% of my stuff in storage and moving in with her for a year or two (ugh !).

I could choose to move to the boonies and renting for a year or two while living 2-3 hours away and waiting for the drama to resolve itself (ugh !).

Or, I could chose to counter-offer the Seller with a rental option equal to the value of the mortgage in a rent-to-own option with a two (2) year limit, in the hope that I could be able to opt to buy this unit as soon as I can document a higher income.  But, that’s pretty ballsy.  However, with a 2-year option, they could terminate the deal at any time if I’m late, or if we’ve reached the 2-year timelimit and my case still hasn’t settled.  I want to be fair and not keep them on the hook indefinitely.

I’m really thinking that my Plan A is going to be the ballsy option, with me offering to pay for the costs of putting in linoleum and painting the unit inside (all white) so that it’s clean enough for me to move into while reducing my costs…

Plan B will be to move to the boonies.

Plan C will be to move into the Roomies for a year or two (she can use the income).

Decisions, decisions, decisions.

For now, I’m continuing to pack as I clearly can’t afford to stay where I’m at, regardless of whatever option is the final outcome.

New Thresholds

 

Disability approved

Got into my bank account this evening to transfer money from Savings into Checking to find that my Disability approval for long-term status has been approved.

Phew !

Of course, that started a whole bunch of other work between me and the employer’s reps and the lawyer to update everyone on the approval (in the hope that the employer will do the right thing and pay me my matching wages so that the legal fight will just go away).

Yes, I sometimes live in fantasy land.

The other surprising thing was to find that the real estate agent for the trailer I was looking at reached out to me on Friday… maybe I can still qualify for the unit?

Whatever’s going on, I’m at a variety of new thresholds and hoping that everything will go well moving forward.  So very pleased to be off this stagnant plateau !

Time keeps slippin’, slippin’, slippin’…

…into the future ♪ ♫ ♬

I’m just not good about waiting.  My life is always planned ahead for about 3-6 months at a time, as I always need something interesting or fun to look forward to.

Yes, I admit it.  I’m shallow, and find doing the same thing all the time BOR-ing !

The top of that list of boring things is housework, and I’m speaking as someone who was a chambermaid for 5+ years from 13 to 18 years of age.

Cleaning

I *can* do it.

When in the right mood, I *like* doing it.

I just can’t get motivated at present.  Truly, I’m looking at how much energy I have each day, and I’m juggling my need to clean and get chores done with actual time spent outside of the house, enjoying myself, before tiredness takes over.

Somewhere along the line, I learned to move every 6 months to a year, which negated the need to do heavy cleaning, as it would be easier to pack up and move and deal with it all in the spanking fresh “new place”.

As I’m getting closer to finding out whether or not I’m going to be approved for disability, and whether or not I’ll be able to buy a home and move, there’s even less incentive to clean.  Dust has become a fact of life in my house.

Internet was down

Sad but true.

I tell you all of that to tell you this:  I saw the movie, “Doris”, last night.  Looking at her house was scary !  Not scary enough to clean today, but scary enough to get me thinking about the need to clean.

That’s progress, right?

Kinder to say nothing

Cry about being tired

So many of the stories I read on here and on myCOPDteam’s website deal with people being at the end of their lives.  Being there, and unable to face reality.

Because I’m coming to this from a different viewpoint, in that they never expected me to live this long, and my body is still doing pretty well despite it being time to go onto disability in order to avoid being homeless and poverty stricken if I’m no longer able to work and am fired due to my underlying illness, I find it’s often kinder to say nothing on other people’s posts as I just don’t get the fear of the inevitable.

Maybe I’m just too shallow-minded?

Maybe I just accept that there are lots of grey areas in life, without clear-cut answers?

Whatever it is, I feel like this crazy woman riding a bike through their stories, unable to see anything but her own view of the world, while also empathizing with all that everyone else is going through.  Yet still unable to change their outcomes or make any difference in my being there.

Styling

At the end of the day, when the pantyhose have been torn by brambles, and my turban is askew, I’m still going to be who I am, the crazy woman who started the day styling, and certain that I looked my best with what I had to work with, and game enough to try and have fun.  I just can’t be sitting on the sidelines, angry at the world, denying that time is running out, and bemoaning my fate.

I am just too shallow to sit and wallow.  Even I get bored with myself and the whining.  While also knowing that contemplation and venting has its place.  I just can’t keep up the energy level to worry, even when it’s a realistic concern, as I just get aggravated.

To illustrate, I’ll tell you another story.  Many years ago, we were camping in the woods.  We’d gone with a bunch of people from work, including a bunch of my girlfriends hoping to hook up with the engineering types and prove that they were “worthy” dating material.

Yeah, I was a girl scout, camping badge and all, so I was there to camp vs. worrying about how cool I looked staying outdoors and sleeping on the ground while trying to snag a man.  I would never date anyone at work, as I’d long ago decided that I wasn’t dating material, so my agenda was very different from other girls of my age.  I was the admin for the guys, as I ran 3 engineering teams of designers, 50 in all, so I was also the entry to this party for all my secretarial friends.  Girls that I tried hard to enjoy and get along with, but whose life experiences were so different than mine that it was like I was an alien being.

Girl-Scout-FIRST-Non-Earned-Patch-CAMPING-1970s-NEW

But, I tell you that to tell you this.  By the time Terri screamed for the 15th time as lighting thundered, and the girls had run back and forth over my body getting into and out of the tent, running to the cars for “safety”, I was fed up.  Tired.  Grouchy.  Indifferent.

It was the middle of the night.  I was cold.  The ground was hard.  I was tired.  I didn’t care if a bear got me or I was hit by lighting.  Whatever happened, or didn’t happen, life would go on.  I’d either be eaten by a bear (not likely!), or hit by lightening (again, not likely), but I was going to get some sleep before the night was through.

We’d already made a run to my grandparent’s cottage to pick up extra blankets (October camping in New Hampshire is FREEZING), and I wasn’t leaving this bed again.  Whatever was going to happen was beyond my control, so please just leave me to sleep.

I didn’t have a lot of patience then, and I have even less now as I work my way through life.

At the end of the day, we all make this journey alone, and I need my beauty sleep.  Rather that get sucked into all of the drama going on around me, I generally think it’s kinder to just keep my mouth shut and go on my way.  It doesn’t change anything, but at least I stay out of trouble (most of the time).

 

I won, I won, I won !

Exercise Day 2

Anyone who knows me would *know* that it’s silly that I’ve been fighting for the right to exercise, especially since the picture above shows what happens as soon as I’m done.  I need a nap.  Sometimes a lo-o-o-o-o-ong nap.  But, don’t let anybody tell me I am not allowed to do something, as that will only guarantee that I will not be able to be at peace / rest until I get it done.

It’s sad that I’m that predictable, but the reality is that I come from a long line of stubborn people who seem to need someone to fight with, and in my case it’s bureaucrats.  (Much nicer than picking on an innocent spouse).

Just got back from the Pulmonary Doc, who agrees that there are beds and chairs all over the world, and that my request to be able to travel despite my breathing challenges and exhaustion is not unreasonable.

I also got the results of my social security breathing tests (very similar to what I’ve previously posted in this series of blogs), and the Doc says that they still aren’t passing, so we’re hoping that Social Security will ultimately approve my request for benefits.

My breathing numbers are still falling (somewhere between 25 and 33% on a good day), but I can now move my butt a little each day without fear that being “caught” doing so will mean an automatic denial of benefits and a charge of fraud for faking my breathing difficulties.

Clearly, the bureaucrats never heard of Catch-22, in that I must keep on moving in order to remain healthy, but I also have to move less than I would be when working as my battery is just not charging up to full power any more.

COPD Daily Activities Example

This war isn’t over, but I’m glad to see that I made it through at least one battle with things appearing to go my way.

 

Living with ADHD

Conditions Sign

I’ve been reluctantly in therapy because “they”, the experts on my condition should I choose to have stem cell treatment, advocate that the head docs need to weigh in on life and death matters.

Even though I’m not dead yet, but accept its eventual reality.

So, I chose a therapist who specializes in “life coaching”, “transitions” and “grief counseling”.

I chose my particular therapist because I’m aware of the school of thought which tries to rate one’s stress level as a wellness predictor.  In my case, I have my mental health baggage organized and ready to go.  The problem is when my heart argues with my head.

Knowing what the “best” or “right” decision to make is, and actually making it, are two different things.

I first went to counseling when I was about 7 years old and defiant about going to school.  Those people were wasting my time, and I saw no reason to deal with a teacher who talked down to me, babied me, and disliked me.

I say “disliked” and I mean it, because I saw her for what she was, unhappy and cruel, and knew that we’d never give each other the time of day if we hadn’t been forced to be together.  At 5-3/4 age, I entered her class already knowing how to read and write – cursive, even ! – and instead of promoting me ahead, they left me with her because first grade is hard and I needed the social exposure to kids my own age.

I had spent the first 5 years of my life in and out of hospitals, battling my own body to live.  My mom, when allowed to visit (because this is in the days when visiting hours were strictly enforced), entertained me with stories and gentle activities that could be done while lying in bed.  So, I was ahead of the curve in terms of reading and writing, even if I was behind the curve in socializing with my peers.

Multiple surgeries and recuperation periods means that I know how to sit.  Just sit still and endure.  My body may be trapped, but my mind roams freely.

So, I think I’m pretty much on top of my mental health challenges, and dislike having to tell my story to anyone just because I have to check a box on a form that I’ve done what they asked and gone through the necessary counseling.

That doesn’t mean that I won’t cooperate, but that I do it because I know I must, and I deal with the fallout of my heart fighting my mind whenever I open my mouth.  Tears are normal for me.  It doesn’t mean that there’s something else going on subconsciously, because I acknowledge my unhappiness while still cooperating.  I’m a big fan of getting out of one’s own head without adult supervision, and letting the experts weigh in.

In my case, I don’t need:

– compassion, respect and practical guidance (I have that, thanks)

– to gain perspective on past patterns and negative feelings (ditto)

– new strategies for enacting positive change (I like my life the way it is)

– to gain a sense of inner calm, self-awareness or self-acceptance (got it, thanks)

– to gain a feeling of empowerment or control over my life (nope. Fantasyland).

I have great friends who see me as I am and who like me.  Really like me.  I am blessed.  I’ve even been able to figure out how to have a significant other without driving the both of us crazy trying to fit into traditional roles.  We truly are friends with benefits.  We laugh over our individual peccadilloes, and enjoy each other for who we are – warts and all – without trying to force the other into a mold which just won’t work for us.

I don’t hate my father.  (It’s certainly complicated, but I feel for the child he was).

I don’t idolize my mother (although I am her biggest fan).

I don’t regret things that take two to change  (and which I can’t fix on my own).

I understand boundaries and where I have to let things be and simply accept what is in life.

While I still envy a good looking bosom, and wish I was able to be born with a rocking body, I’m grateful for the tattoo’d generation of young women who showed me that my scars are not a burden but just another reality.  Age would have come along anyway to impact my body perspective, so it’s all good.  I accept that my body functions, not as well as some or as poorly as others, but it functions.

I’m grateful for all the pancakes that I burned while dating who showed me that I could make healthy dating choices by waiting until guys were older and maturer, without latching on to a “Daddy” figure at a young age.  Or deciding that a guy was the key to financial or emotional stability.  I have remained:

Uncompromising.

Strident.

Strong.

I’m all of those things while also being:

Realistic.

Compassionate.

Diplomatic.

I tell you all that to tell you this, at any rate:  When I was at my worst, as a child, I was diagnosed with ADHD.  Attention Deficit Hyperactive Disorder.  In my case, a type of mania which said that I couldn’t concentrate on anything (I didn’t want to concentrate on), or sit still for five minutes (when forced to do so).

My ADHD was situationally-related.

While I took ritilin, I was also blessed with a Mom who assured me that people had lived millions of years with mental health challenges and no medicine, and survived.  I was going to be on that medicine until I could control myself, or until maturity arrived and my actions demonstrated that I didn’t need it any more.

Mom was a huge champion of mental health therapy, even when she saw the damage it was doing to me in trying to help me.  Mom was trying to keep me out of the institution personified in the State Boys Rebellion up through the 1970’s, and before the mental health institution exposures began to come to light:

9780743245135-us  p30513_d_v8_aa

She knew what could happen to me, just like it happened for others worldwide, if the state stepped in to remove me from our home (which the school was suggesting was “best” for everyone involved).  Mom had already lost a few kids to miscarriage and death – she wasn’t losing me to an institution.

When I’ve seen a movie like “Evelyn”, or read a book like the “State Boys Rebellion”, I have few memories of that time as I believe most have been lost through PTSD.  Thankfully, I have blank spaces in my head, and that’s ok.  At this point, and while it was happening, I knew/know that my Mother was my greatest ally, and that many of her unorthodox theories have really worked to put me on an even keel in life.

One of her key theories, however, is that you need to take your medicine when dealing with an invisible illness (mental health issues) as it has the ability to force or enable one to endure intolerable conditions (in my case, being treated like an idiot just because I’d had multiple surgeries and was refurbished).  Being treated as “lesser” was never tolerable to me, and that’s before one understand’s that Mom also raised me to be a lady with the Queen’s sensibilities:

– Never without my permission may anyone (touch me, kiss me, dictate to me, etc.)

– A lady never resorts to violence or public displays of temper (seriously)

– Never rest when facing injustice; acceptance of the intolerable is unacceptable.

I had those sensibilities, yet I was being forced to deal with a teacher who insisted on cuddling and kissing me (yeah, the more I hated it, the more she did it).  I was also dealing with regular beatings from the kids at school.  Like animals, they know if someone is defective, and my warnings from Mom to never raise a hand to another (although I had quite the mouth), ensured that I was out of step with my peers, and too tempermental to realize that my big mouth was causing most of the problems.

I was born into a family with a bedrock of independence and royal manners, but without the money necessary to fund such an effort in a public manner to make the acceptance of such airs commonplace.  Since Mom felt that the idle rich were damaged by being idle, she assigned me chores and gave me resources to work off my excess energy to tolerate those things that I could not otherwise contemplate enduring.

If scrubbing the floors and such keeps me from falling into despondency and depression, then it’s a beneficial side effect for being OCD about having an immaculate home.  If doing all that work exhausts me enough that I can live in my body without the aid of medicine, then it’s all to the better.

When the going gets tough, though, one falls back into the old cleaning patterns first, trying to nip depression or despondency in the bud.  Yes, I’m powerless at present.  But, it’s only at present.  I’m in limbo waiting for the next phase of the process to begin, and things will evolve, given time.  I just have to continue to exercise my patience and not let my OCD plus ADHD drive me insane in the meantime.  (The ADHD is causing me to have 1,001 projects unfinished in “piles” about the house, and my COPD tiredness is causing me to nap any time I need to get stuff done.  Very counter-productive).

Many years have passed since those early lessons, and my home is anything but immaculate at this point.  But, I’ve stayed on top of the mental health housekeeping, so I’m ok.  Yes, my life is frustrating right now, but it’s manageable.  The lessons she taught me are still effective and helpful.

I can tolerate the therapy if I must check the box to have something else accomplished, but otherwise, I’d prefer to skip contemplating my feelings.  Things are what they are, and I’m ok with it all.  Excuse me while I go and scrub the tub…  ’nuff said?