Friday, May 20, 2016

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!

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