How sick is sick enough for you?

October 7, 2012

When I was a kid and my symptoms first started, a lot of people said that it was all in my head.  Doctors, nurses, teachers, friends, and family all expressed doubts at one point or another.  My mother was the only one who never doubted me.  I heard it so much that even I started to wonder myself.

After 11 years of symptoms, it was a relief to finally have a blood test as proof.  “Look world, it’s not in my head, it’s a real thing!”

Now I’m fighting the same fight again.  Only this time, instead of saying the pain isn’t real, people are saying it isn’t bad enough.  I keep wondering, how sick is sick enough?  What’s the limit?  What’s the definition?  My boss clearly didn’t think I was too sick to work.  Or maybe that was just wishful thinking on her part.  The long term disability insurance folks have said that they don’t think I’m too sick to work.  I’ve been spending months preparing the materials, bit by bit, to prove otherwise.  Now, I just found out that the MassHealth folks (our state medicaid system) also don’t think I’m too sick to work.  Now I have to figure out how to prove otherwise to them, too.  Of course, I’m expecting to get denied by the SSDI folks, since almost everyone is denied on their first try.  I just applied, but I’m pretty sure I’ll have to work on an appeal.  I got dumped by a doctor who’s tired of dealing with my expensive tests and extensive paperwork, and who was unwilling to state for the record that I’m too sick to work (even though he said it off the record many times.)  He told me to have another doctor do it.

Being this sick is the worst thing in my life.  Being unable to work is demoralizing and scary.  So what’s happening?  Instead of focusing on the positive parts of my life and trying to work through this crap, I’m forced to focus on the worst parts of this crap and explain and define it over and over again for all of the doubters.  I’m forced to examine and then reexamine the most negative parts of my life and lay them bare for strangers to judge me.  And they certainly do judge me.

I’m not the first person to go through this and I won’t be the last.  But at this moment, I may be the most irritated.  I just want to yell at all of those idiots, “If you don’t think I’m sick enough, then just how sick do you think I need to be?  How sick is sick enough?  How sick would you have to be to not be able to do your job?  How sick would your kid/parent/sibling/best friend need to be to not be able to work?”  Not that I think it would do any good.  I’m just tired of being judged.

Why medical records stress me out

October 4, 2012

How many of your own medical records do you have?  Really think about that.  These are pieces of paper (or maybe electronic files, if you’re lucky) that delve into various aspects of your health from the day you were born.  They are from every practitioner you’ve ever seen.  How many do you really have?  And how do you find any particular piece of information within them?

It bothers me sometimes that I have so few of my medical records.  Of course, I don’t know how to quantify this, but I know I’m missing a lot.  There are the many doctors I only saw once or twice.  There are a few doctors who I saw a bit more.  And I no longer remember who any of them are!  There’s just no way to get those records now.

Then, for each practitioner, there’s the matter of getting my hands on every record from the time I started seeing them.  For the practitioners I am still seeing, this means constantly asking for new copies of records once or twice a year.  For many people, this costs money. I can get some of my records for free, but I pay for others.  Frustratingly, I can arrange for specialists to send copies to my PCP for free, but I have to pay to get copies for myself.  Why is this?  I think it’s wonderful that the law (at least in Massachusetts) requires that PCPs receive all medical records at no charge.  This is important to maintaining patients’ health.  At the same time, though, I think that patients need to be responsible for their own care, and that those who want to be responsible for their own care should have free access to their own records.  There should not be any roadblocks to this.

Asking for medical records is frustrating, but I am completely mystified that I can not get copies of any lab work without going through my doctor’s office.  I get some testing done through the doctor’s office’s lab, but some of it is done through an independent lab.  I called that independent lab to ask for a copy of my test results recently, and they said that they were not allowed by law to give me those results.  This was my blood that they tested.  This is my health they checked.  But I can’t know the results?  Really?  I understand that they don’t want uneducated people to panic when they get abnormal results, but what about those of us who are educated about our conditions and who want to take charge of our own healthcare?  I should not have to wait an extra week to get my doctor on the phone, or maybe even have to go into the office and pay an extra copay (if I’m lucky enough to have insurance, which I don’t have the moment) just to find out that my TSH levels have changed.  That’s absurd.

And having copies of my medical records isn’t handy for just my own use and knowledge.  Every time I see a new doctor, it helps to bring my own records instead of waiting weeks or months to have another practitioner send them over.  With the insurance appeal, SSDI application, and Medicaid application, having my own records speeds up the process by weeks or more.  Not having the records slows down these already-painful processes.

Of course, let’s assume you actually have all of your medical records.  What do you do with them?  I stopped counting a long time ago, but I know that I have many hundreds of pages of records.  It could easily be over one thousand pages.  Yes, 1000 pieces of paper containing both important and unimportant information.  (The picture above shows some, but not all, of my records.)  While almost all of my records exist in computers at doctors’ offices, I am not able to receive electronic files.  At one point I considered going through my records and entering all of the information into a searchable spreadsheet, but it was just too overwhelming.  Then I figured I would do the same thing for only my current records, but I couldn’t figure out how to set it up in a way that would actually be useful.  Analysis paralysis.  Shoot.

This stresses me out!  I know that there are important tidbits in those pages.  I know that it would help to have access to every record of mine that exists, and to have it in some useful format.  I just don’t know how to make that happen.

When I was first diagnosed with an autoimmune condition it was a real shock to me.  I had been having symptoms for 11 years at that point, and this seemed to come out of nowhere.  My ANA levels were incredibly high.  At the first appointment, I gave my new doctor a copy of my old medical records.  I can’t imagine how long it took him, but he went through those records and found two previous ANA tests that were high.  I wonder if there were others that he didn’t find in that mess of papers.  The two previous tests weren’t high enough to diagnose me, but they should have been flagged and watched.  Someone should have been continuing to test those levels.  My PCP back then was less than useless, and he never coordinated my care.  No one told me about the tests.  Back then, I didn’t read my own test results, and since no one had mentioned autoimmune conditions to me, I didn’t know what to watch for anyway.  Now imagine if this had been different.  What if some of my other doctors could have easily done a search in an electronic file and seen those high scores?  Or what if I could have done it myself?  I could have been diagnosed years sooner.

There have been a few other times that I have read parts of my medical records for one reason or another, and found surprising notes.  I learned that a doctor thought I was overly emotional, and that was the reason behind my pain.  I learned that something was found during surgery which the doctor never mentioned (and I have witnesses that he didn’t!)  I discovered suspicions that doctors had about my conditions, but which were never tested (and some of them turned out to be right!)

What’s done is done, so I am not dwelling on that.  What I am dwelling on is the fear that it could happen again.  I have dozens of blood tests run every year, plus other tests.  What if I am missing something?  I won’t rely on the doctors anymore.  I need to keep track of it all myself.

What do you do?  How do you keep track of your records?  Do you have copies of everything?  Do you create electronic files? How do you organize it all?  I would love to get ideas from everyone!

Feeling a bit less pain

October 1, 2012

I’m trying to focus on feeling a bit less pain.  In general I’ve had plenty of good days, but I’ve also been having bad days.  On this blog, though, I’ve been focusing almost entirely on the negative aspects lately.  Of course, there’s a reason this blog is called Chronic Rants.  Yes, I like to rant.  Yes, I think that sometimes it’s necessary to rant.  But it’s also necessary to focus on the good parts too, to make sure we don’t just wallow in negativity.  I sometimes have to make an effort at that.

So today I’m thinking and writing about having less pain.  The pain really skyrocketed last month, thanks to the change of seasons.  I’m not sure exactly when this week the pain went back down to my pre-transition levels, but I love that it did.  I know that it might not last, but I’m going to focus on it while I can.

I think there’s a tendency, especially with a new symptom or a new diagnosis, to expect a complete “cure” of a particular problem, and anything less isn’t good enough.  Over time, that attitude changes.  When you’ve suffered from level 6 pain (remember that good old pain scale?) for years and then it shoots up to a 9 for a while, going back to a 6 feels great.  Sure, my fingers still curl more than I’d like, it’s hard to rest my hands palm down, and I can’t carry heavy things, but so what?  And the truth is, I had many years of pain at levels 8 and 9 on a daily basis, so I’m actually able to do a lot now, thanks to hydroxychloroquine, that I couldn’t do before.  I can hold a pen and write a full paragraph, I can hold a knife and cut vegetables, I can pick up a pot of water and pasta and drain it in the sink, and I can type with two hands.  This is fantastic!  Is it perfect by a “healthy” person’s standards?  Nope, far from it.  But for me it’s heavenly.

I have a lot more tough topics coming up, and I won’t shy away from those in my mind, in my heart, or on this blog.  But today, it feels good to focus on having a bit less pain and feeling a bit happier because of it.

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