Living While Recovering

Just like anyone else with chronic illnesses, I have my good days and my bad days.  Some of them are just a part of the natural cycles of such illnesses (for me, at least, both depression and anxiety seems to be somewhat controlled by cycles, not on the same cycle as my menstrual cycle as if it were PMS, but still cyclical).  And the chronic pain cycles too, some of which is due to barometric changes, some just simply due to good days and bad days.

But, this is also the first chance I have had in 20 years to get consistent, supportive and quality healthcare.  It’s been hard to have consistency in medical care, because the last time I had consistent medical insurance was when MY job had it – which I was laid off from, because the job was literally killing me (this was when I was first diagnosed with high blood pressure, because it was 200/100 – the doc insisted on an EKG because she was absolutely convinced I had had a heart attack, but never noticed it.  Thankfully, I had no signs of a heart attack, and have not had any since then).  That was 2004, when I went back to school to get a degree in the job I was already doing as a freelancer, because no one would hire me as a web designer without that degree.

So, relying on retail business’s chosen medical insurance (which, let me tell you, is constantly bottom of the barrel, and often costs so much to have your spouse added to it that it would take the ENTIRE paycheck), especially when most jobs he had rarely lasted longer than 6 months.  And that usually was only 3 months of care, because most retail places only give you insurance after you’ve been there for 90 days.

It’s wonderful to have consistent and supportive care.  But, it also means that as we work through assorted health disorders, other ones come to the forefront.  Like with my emotional and psychological work, once the major things are dealt with the “less major” things start to need to be dealt with.  Except, they aren’t really “less major,” they’re just things that were hidden by the more extensive symptoms.

For example, this week has been pretty difficult.  I had two different MRIs scheduled, one on Monday and the other on Tuesday.  One was in a hospital, which is bad enough, but the other was in a mobile unit (MUCH smaller than the stationary unit in the hospital).  The second was painful as hell, and was much longer than the first.

I’m trying to coordinate my physical care with my mental care.  And I’m struggling a bit with the mental care.  Why?  Well, remember back in February when I discussed the MMPI-2? I’ve requested a referral from the initial testing doctor, to get more in-depth testing.  Unfortunately, my interaction with him has been rather negative since he completed the report.  As much as he claimed to believe that I was not “malingering” (part of the MMPI and the more updated versions is an analysis of the cooperation of the patient with the tests – both he and his assistant observed me, and both agree I was doing the best I could with all of the testing) the fact that I want more in-depth testing seems to make him act defensive.  I can understand it, particularly given he’s a post-doc, and thereby my arguing for further care could easily be causing him some confidence issues.

He passed me off to his assistant, to get the referral.  When I asked her if I could send the research I had found that supports the fact that those with fibromyalgia and/or chronic pain are consistently more likely to test as if they were malingering. The fact that he specifically claimed that he thought I took the tests completely honestly, but still added somatic disorder to the diagnosis, means that someone else reading the results and report are likely to also continue to consider me more likely to be a “malingerer.”

But, there has also been further deterioration in my cognitive function since his testing.  My short-term memory seems to be getting damned near useless.  I’m losing vocabulary (I used to joke that it was ‘noun cancer’ – but now it’s becoming ‘English cancer’ as in I am consistently seeming to lose random words far more often than I used to). I’ve been finding myself needing to consult websites meant to help teens understand their classes in order to actually do some of the normal day-to-day shit.  Hell, I have to use the calculator to add numbers or figure out percentages – something I used to be able to do in my head.  There are times I actually have to make Google searches in order to get the right word to use here on my blog.

Given that it’s gotten bad enough for others to see it happening, I’m very motivated to get further testing. And I HAVE to get the referral, because otherwise my insurance won’t cover the more in-depth testing.

Unfortunately, as my sister reminded me and why I tend to have a chip on my shoulder when it comes to doctors and therapists, there are different standards of care for the different classes of people.  Those who live in poverty are more likely to be given slap-dash care, or be assumed to either be drug-seeking or faking their illnesses.  It’s why many people living in poverty DIE of diseases that could have been cured if the standard of care were of better quality.

Now, there are two reasons for the lower standards of care.  The first is that many of the practitioners out there who are ministering to those living in poverty are excessively over-worked.  Anyone living in poverty who has tried to get to see a particular doctor based on recommendations, only to be denied because “we’re not taking any more patients with state-supported medical insurance” know that there are only a limited number of practitioners who are willing to care for the poor.  Sadly, when someone is over-worked (and also forced to keep the appointments limited) their diagnostic ability is severely depleted.

The second is that some of them just really don’t care.  They don’t take the time to do diagnostic tests, or anything else that might actually give the person real medical care, and only diagnose the “easy” stuff – the things that are obvious right off the bat.  And they spend even less time with poor patients than the over-worked practitioners do.

It’s not just the greater population that likes to think that people living in poverty are all lazy assholes looking to suck off the government tit.  And if the poor die, who really cares?  We’re all a faceless stereotype, so why worry about one death – particularly if one can assume that the reasons we are having illnesses is because we’re all junkies or alcoholics or any other stereotype you want to paste onto the poor.

You know what?  I would truly like to be able to work.  I would like to be able to rebuild my financial life, fixing things that have taken 20 years to destroy themselves.  But, my brain is not consistent – so taking a job that requires memory is out of the picture.  My arthritis won’t allow me to stand more than 10 minutes at a time and I can’t lift anything over 20 pounds, so most retail jobs are out of the picture.  Secretarial jobs almost killed me with the stress.  And my web design is suffering, because I can’t always remember simple coding.  And sitting at a computer?  Guess what?  It takes me hours to write these posts because I have to move around about every 10 minutes.  So, my mind and body won’t let me work right now.  But I’m doing it all to myself, really – I must be faking it somehow.

Yes, this is a subject I have strong feelings about.  And I won’t be labeled because you think you’re superior to me.

Categories: Body Health | Tags: , , , , , | Leave a comment

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