Friday, May 20, 2016


Originally I posted this to my DISH support group and had a lot of positive feedback on it. I figure if I am opening up on my health issues (ie: my daily life) that I might as well toss this one out to the rest of the universe as well.  Just as an FYI...its clean, but not necessarily appropriate for everyone as I (humorously) discuss a real problem I am facing with being a plus size gal with DISH.

Here is one of the oddly humorous curves DISH has thrown at me:

I realized this morning that with as much image posting I do from my small phone, that I should probably clear some photos out of my standard folder, as I wouldn't want to post them by accident and be met with villagers wielding pitchforks and burning torches claiming I am a menace to society and all that is holy in the world.

Let me explain:

My surgeon and I are waiting to hear if insurance will approve a breast reduction to ease my back and neck pain. Having been amply endowed since puberty, this struggle has been going on for over 3 decades now. "The girls" (as they call themselves) merely laugh in the face of weight loss and refuse to budge by so much as an inch; zoning regulations be damned. Being the darn little (uh...not so little) squatters that they are, they refuse to listen to reason, so I am now forced to consider drastic measures.

In preparation, my surgeon asked what I felt would be a reasonable setting on the va-va-va-voom yardstick (my measuring reference, not his!) I had no real frame of reference on what “normal” sizes equated to in terms of spacial volume, so I said, “C”, and then felt I needed to tack on a hurried disclaimer of, “it doesn't matter how they turn out so long as they are smaller that what I deal with now, you know. I don't care what direction they point or shape or anything...please just make them smaller.”

My surgeon laughed along with me, noting that, yes, as size C is a good 7 or 8 letters down the scale from where I currently reside (not counting those tricky twin or triplicate sizing course corrections), it would be just fine as my final destination. However, as I left his office I began to wonder... were C's going to be too big?

So I started researching before and after shots, and even saved a few on my phone with the reasoning that I would point them out to my surgeon like some freaky show and tell: “see Doc, her original set is similar to mine and see what she was able to get...can I have those too?”

Heaven help me if someone finds them, as I am really a clean-cut girl, though it probably wouldn't be hard to explain since all of the before shots are marked up with surgical “cut here” dotted lines, x's and arrows, making these poor victims of "excess coverage" look like impromptu chalkboards recording lines of scrimmage for the home team's next big play!

Of course I can't be so forward as to walk up to a gal and simply ask for her cup size; “Where did you get those earrings?” no problem. “Love the haircut, mind if I snap a shot to show my hairdresser?” easy as pie. “Can I ask you what your breast size is, 'cause I want those?” sorry....nope. I'd either wind up with a slap to the face, which I don't need (but then, everything hurts anyway), or a speculative glance and maybe someone's phone number, which really doesn't fit my style either.

Which leaves me with my current situation...googling (googling, not ogling...thankfully, there is a difference) breasts online; hoping no one sees my little stash and start thinking I have a problem.....

Which I do....

Curse you DISH!

Where it all stands

I guess I should break down just where my health stands, shouldn't I?  After all, my last two posts must seem a bit cryptic without clarification.

First, a little background....

I've had back and neck pain since my teens (hello big boobs, but more on them later). I've had problems with my feet since my mid-twenties, but I pegged that to weight. I've thrown up daily since I was 17 and had my stomach stapled (which does no favors to your teeth and esophagus); had issues with rupturing (painfully, I might add) ovarian cysts since my teens as well, and added tendonitis of my shoulders/arms in my thirties. Just for kicks my body decided to give me severe knee inflammation three years ago, just in time for our move across several state lines.

In other words, life, for me anyway, has been all about pain and how best to work around it and ignore it when possible. Seriously...ever since I was a kid (as far back as I can remember, which is preschool days kids!) I was getting grief on being heavy and needing to not eat as much, which is sad because I've seen pictures of myself as a kid and while I wasn't a willowy stick, I wasn't fat (not at first anyway...depression and self-loathing took care of that eventually though). Physical pain followed pretty hard on the heels of puberty.

Me, 9 years of age. Man I'd love to be "that fat" again!

Last year I decided to do a few things about it, and that's when things went a little sideways...

I finally hit an age where doctors and insurance agreed that a hysterectomy was the right course of treatment to not only deal with my cyst issue, but because I was also higher risk of uterine cancer due to my abnormal bleeding over the years (oh, did I fail to mention that one earlier? I guess its because I had an outpatient procedure a few years earlier that literally scraped my ill-functioning uterus clean and then cauterized that sucker into more periods period. Seriously, the best decision I ever made in my life!) Take THAT you dysfunctional mess...who says you get to decide to give me massive periods of non-stop bleeding for months at a time???? Anemia and iron deficiency take a hike!

So I had high hopes for the hysterectomy nipping my rupturing cysts in the bud (seriously, these were not fun...the day before my wedding to Richard I was in the ER insisting the doctors just give me some painkillers to get me through "my day" rather than opting for the surgery they honeymoon found me curled up in a ball, crying in agony...soooooo not attractive).

You know what?  The surgery worked, and the long scar left behind was totally worth it too. I have a teeny nub of my left ovary left to help ease me into menopause gently, but everything else is gone baby...and the cyst issues went with them (big sigh of relief). I was crazy enough though to be taking calls from work the day of my surgery (before and after) and then working from home during my "recovery time" fielding calls and billing online from a networked laptop. That's where some of the stupidity started...I should have actually rested instead of rushing back into work when I wasn't ready to, but that's just my personality type of being such a "people pleaser" regardless of the cost.

I had been vomiting daily for decades, but it was getting more out of control. In the past there would be a few days in a row where I couldn't even keep water down, but it was usually only a couple times a year... it stepped up to every couple weeks, so I had some testing done and my doctors and I made the decision to reverse my gastric stapling. It hadn't really done me much good anyway over the years...I was still heavyset, but for decades I had trouble eating fruits and vegetables unless they were highly processed, so my Vitamin D levels were in the toilet (literally...sorry, unintended puke joke!)

I had an outpatient procedure to stretch my stomach opening as a temporary reprieve until the surgery could be approved and fit into my surgeon's schedule, and then had the reversal done in October. I'd love to say I woke up and began enjoying life again, but I actually had complications and was in the hospital for a week. I went home, had more complications and had another outpatient procedure to correct the issue.

Which means I pretty much lived on liquids and heavily blended foods for October, November and much of December (blech).  I had a very slow comeback from much fatigue that I have no recollection of many of those days. I'd just sit and stare blankly at the wall; too tired to read or even use a remote control. Yikes! I had never felt so helpless in my life (at least, I felt that at the times I'd sort of snap out of it and starting thinking again). Still, I'm happy I had it done...that first crisp apple was divine and don't get me started on how I felt on eating fresh pineapple! Raw fruits and vegetables are now a part of my life, as well as rice, and I am finally getting my D levels up (of course, being able to take and keep down vitamins as well as my prescribed medications really helps).

I had other doctors trying to work out my back, neck and shoulder issues until finally everyone found answers they could all agree with: Fibromyalgia, Tendonitis and, instead of the arthritis they expected to find, I have instead an issue called Forstiers (also known as DISH). It isn't so much a degeneration, but rather an excessive calcification problem where bone spurs occur and the vertebrae are slowly covered with flows of calcium similar to melted candle wax.  This condition will eventually fuse the spine, but that isn't the painful part...what hurts is the tendons in the body calcify as well. I have chronic inflammation throughout my body (thank you Fibro) and get flareups of pain (that's the DISH talking) where moving is absolute agony; it hurts to stay in one position for more than 20-30 minutes at a time (road trips that I once loved are now rather painful, but sometimes you don't get a choice on that, especially when your specialist is a 4-hour round trip). Even writing this post is hurting arms are feeling the burn and my back is aching from sitting in this chair, but I love to write, so I'll gladly pay for it later.

Pathetic, isn't it?

My hands get tired and start shaking...and they've become real wimps too. I can't hold even a paperback for long before they start cramping and trembling, and forget being able to use my camera (okay, that part gets me angry...I miss my camera).

I'm doing physical therapy though to try and strengthen some stuff up (hands, back, shoulder). I am determined to get the strength back in my hands and arms so I can take photos...even if its from the passenger seat of the car (oh yeah, the fatigue and weakness also wipe me out unexpectedly at times and I have difficulty walking any sort of distance), Good news is that I have a handicap parking pass now and access to store motorized scooters, so there's a confidence booster!) (Okay, I'll be embarrassing as it is to be a somewhat young (I'm not yet 50...damn that sounds old when you think of it though) fat girl in a scooter, it is fun to zip down the aisles...what great obstacle courses some stores turn out to be!)

At least I don't feel like a mindless slug like I was while recovering from the last surgery...blessings there! I do tend to be awake most of the night, and therefore have the habit of taking multiple cat naps throughout my day, but since I am not working right now that hasn't been a deal-breaker for me. I'm still in pain, forget stuff a lot and can't bend properly, but I am working to adapt myself to a new routine, new hobbies and new ways of getting things done.

Now back to the boobs....I have decided on (and am waiting on insurance to approve) breast reduction, as my doctor's agree it will help with the back/shoulder/neck issues. It won't fix everything, but any pain relief and reduction of tension will be welcome. Oh, and it should help me be able to breathe saturation levels like to dance around the "needs oxygen" line. Fingers crossed!

In the meantime I try not to wallow in the "woe is me" aspect and try to take a more positive approach (laughter really is great medicine sometimes).

With the help of my doctors and an attorney, I am waiting to hear if they will qualify me for disability. I've tried going back into the workforce, but my reduced capacity apparently makes me undesirable for employment (and, in case you missed it earlier, it really hurts too).

Not working does, however. allow me time to deal with my health and how best to manage it. Sadly, "rest and heal" seems to be a big part of it when I have flare-ups.

I am pretty sick of being cooped up in the house (I have issues navigating the stairs to our second floor apartment, so I don't wander out unless I need to) but I have spoken with my landlord about letting us know when something becomes available on ground level.  It may not happen immediately as we just went through a renewal process through the complex, but she says she can guarantee me something by next summer at the latest. I am not looking forward to all the work that packing and moving (even if its just downstairs) will bring, but in the long run it will be a blessing, so I'll have to deal with it.

Once that hurdle is dealt with, then I will be able to get out much more often, but, for now, I try and find a reason to force myself to go out once or twice a week...even if its a short drive with Richard to the store. I feel more confident with him behind the wheel right now anyway, because turning my head too far to one side or the other to check my blind spots is very painful, and extending my arms to hold the wheel for extended periods of time irritates the tendons of my arms. Well, that and I never know when my energy levels will crap out.

Yup, my health is a big time pain-in-the-butt right now...but its a work-in-progress. We've all seen construction sites...bits and pieces of the old, broken down bits tossed in a pile and support beams and safety netting tacked up while the reconstruction is underway...that's me right now.  I've tossed out the malfunctioning reproductive tract, removed the stomach bypass to get traffic moving again, and now we're hoping to lose some over-the-top ornamentation that is threatening to cause the entire structure to collapse.

It may not be pretty to look at now, and we're still revising the blueprints as we come across new issues, but I am certain that, in the long run, my doctors and I can turn this runaway disaster into something more functional, more productive and more durable than what it is now.

Bring out the hard hats gang!

Wednesday, April 13, 2016

The downside to being up....

Hey all...this is an older post that's been sitting in my draft folder since January 2015...thought I'd go ahead and share as it is something I feel strongly about.

I came across an informative and interesting look at Bi-Polar Disorder today... something that I, too, suffer from.  Luckily I am on the low-end scale of the disorder, but I recognize a lot of my own behavior patterns in these people.


Why do I share this?  Because I feel that it is better for people to know what to look for, and to understand what it is that we deal with on a very daily basis.

I remember having a friend, years ago, who used to joke about needing her "Shawna Fix"; like I was some drug of choice, and I being so angry and resentful every time she would say it.  All it said to me was that she preferred me in my more manic, entertaining mode... like I was a performing monkey for her entertainment, and I was left with a feeling that a balance was not desired, because someone a little more even-keeled would not be nearly as fun to be around.

I am no longer in such a toxic relationship, thankfully, but I notice I am far more elaborate and peppy when I am around other people... its when I am alone and safe in the comfort of my home that I am able to collapse back into periods of blank flatness, and there are times that I crave this blankness that it scares me.

This is further exacerbated by the fact that I often forget to take my meds.  On my meds it is easier to feel that I am really fine, that there is nothing wrong with me and I find myself forgetting them... until I find myself turning into what I call my "super bitch" mode... where anything is capable of setting me off and leave me fuming; a bomb that is not always easily defused once triggered.

Balance is hard to find, as I never seem to find the energy to try and plan a less-stressful schedule than what I currently have.  I find being asked to do additional tasks frustrating, and I fly off the handle angrily at being asked to tackle the simplest of tasks on top of what I am already doing.  I often burst into tears when I am alone, simply because I am so tired.

Don't get me wrong... I love the creativity, the energy, the being excited and on-fire about a new project, but it is so exhausting.  I find myself just collapsing... hardly having energy to make it to the bathroom, and often don't bother feeding myself or accomplishing tasks around the house. The idea of cooking a meal just exhausts me and seems beyond my capability at times like these.

Weekends are worse, especially when nothing is planned, as I spend my time mindlessly staring at the computer... I can't even be bothered to reach for a book or some other distraction that I normally love.  I spend it doing essentially nothing... a sort of buffer to unwind from a week of running non-stop.  A pressure release valve that leaves me feeling worthless and like I have nothing to offer, as Monday comes all too soon and I am left looking back at a weekend wasted with nothing to show for it.

Maybe it is time to look at having my meds adjusted: at this time I am only on an anti-depressant, but maybe it is time to look at the bigger guns.It is definitely time to re-think my work schedule... 10 to 13 hour days have to stop as I am driving myself into the ground and I hate myself more the longer it goes on.  I am not saying that I hate what I do for a living... honestly, its a nice job that I enjoy, but it is easily overwhelming, as I allow it to consume far too many hours.

These last couple of weekends have found me sleeping through them entirely... which terrifies my husband.  Up to that point I was bringing work home with me; not taking a day off at all.  There is a huge pile of work beside me now that demands I focus on it, but, as much as it needs to be done, a part of me is incredibly resentful that it sits here judging me.  I know that if I don't do it today, it will be just that much more work dumped on me tomorrow, and I know my week is already going to be crazy enough without this added to it.

The load I stack on myself is also hurting others... I become so overwhelmed that I lash out if I am disturbed (for example Richard just walked into my office to see if I needed anything and all I could do was angrily glare at him for interrupting me).  He apologized, recognizing "that look" and now I feel like an utter shit... all he wanted to do was to see if I was doing okay and I became super bitch (at least in my mind... wisely I kept my mouth shut) but I still hurt him needlessly.

So now I need to apologize, and all I want to do is cry because I hate being this way.

I hired a second assistant to help with the workflow, who will start as soon as I have a computer ready (which cannot happen soon enough in my opinion).  We had increased our field support employees (our staff in the field has doubled since last December) but I hadn't brought in help for the increase in billing paperwork that it generated.  I hope having another assistant helps, but I know that I need to speak to my doctor about other changes as well.

I need to find a way to stop the mood swings that seem to have taken over so much of my life.  I need to learn to find a way to say "no" (politely , of course) to additional tasks that so easily overwhelm me, which will not be easy, because I am naturally the kind of person who wants to say "yes" and not hurt anyone's feelings.

Frankly, I am not sure why I am throwing this out into the void, but I hope that it will help me to get a better picture if I do, since I am very good at ignoring things that I do not want to deal with.  Will I post this?  I doubt it, as I do not like worrying others with my own trivial problems.  Most likely it will sit here in my drafts box, and I will later go back to it and laugh at what a Drama Queen I was being and how overly melodramatic I can be.  Of course, I will safely be back on my meds by that time, and not likely to feel connected to these feelings.  Like I said, I am good at ignoring things, and forgetting the unpleasant bits of my personality is second nature to me.

But if I do post this, I wanted to add a link to the documentary I watched, as it was so very well done.  I want to throw out my thanks to Mr Fry for sharing a very personal side of himself and to the many people who graciously granted interviews to discuss their own challenges with this lousy disease.

And for the record Mr Fry... I would push that button in a heartbeat.