Breathing a sigh of relief: we had the sense to re-elect Obama

November 7, 2012

I was worried last night that Mitt Romney could be elected president.  Actually, it was more like scared.  Well, to be honest, I was absolutely fucking terrified!

A few days ago I wrote about Romney’s lack of compassion when it comes to providing healthcare for the non-millionaire sick people in this country.  You see, unlike every other industrialized country, the United States does not have universal health insurance.  Incredible, right?  I had planned to write about some of his other stances that could affect us, but I didn’t feel well for several days and wasn’t able to write.  I didn’t feel better until this evening, and by then I had already reveled in the wonderful news: President Barak Obama was re-elected!

My joy at this news might offend some people and that’s fine.  You have your opinions and I have mine.  But since this is my blog, I’m expressing mine.  😉

There are so many ways that last night’s election was a good thing, but let me list just a few here, in no particular order, including some great health-related results:

  1. While there is still racism in this country, it isn’t enough to stop Obama’s election or his re-election.
  2. There are now a record number of women in Congress.  We are still incredibly under-represented, but we’re moving in the right direction.
  3. There is still misogyny and and sexism in this country, but the worst offenders, those who suggested that there is such a thing as “rape that is not forcible” and that “rape is a form of conception,” were voted out of office.
  4. The Affordable Care Act will not be repealed.  I didn’t think it would be anyway, but at least now we don’t have to watch our government waste time and money with the attempt.
  5. Three states voted to legalize marriage equality and one state voted against a ban of marriage equality.  This is the first time that marriage equality has won at the polls and it happened in FOUR states!
  6. My own state elected a smart, sensible, honest woman to the senate.
  7. With the ACA safe, women with health insurance will still be able to get free birth control.  Now we need to make this happen for the women without health insurance!
  8. With Obama in the oval office, I feel much better about who will next be appointed to the Supreme Court.
  9. It is less likely now that Roe v. Wade will be over-turned.
  10. My state and others passed medical marijuana laws.  Finally, there will be a treatment without the horrible side effects of so many (all?) of the others!
  11. My faith in the American people has been generally reaffirmed.  Yes, there was the riot on a college campus last night.  Yes, there were racist comments being made.  But overall, the American people showed themselves to have, in my opinion, good judgement.  Overall they were not racist or sexist or homophobic.  Overall they voted for the good of the nation, not only for the good of themselves.  And now I can breathe a bit easier because of it.

I could go on and on.  There was the first Hindu woman elected to Congress.  And the first openly bisexual woman.  And so many others.  But in the end, the important thing is that I feel our country is moving in a great direction.  I can hardly wait to see what happens next.

3 Comments | Decisions, Expectations, Healthcare, Medication, Politics, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

Which treatment might have done it?

October 9, 2012

M scoffs at me when I refuse to try multiple treatments at once.  She thinks I’m just dragging my feet, trying to avoid being proactive.  The truth is, with other parts of my life that is totally true and she’s nail me.  But when it comes to medical treatments, she’s way off base – I just don’t want to have something work without knowing which treatment it is.  And if something goes wrong, I need to know which treatment it is then, too.

Today a relative asked me for the first time in a long time if my new diet is helping at all.  What could I say?  I explained that in some ways it’s definitely helping – the daily nausea is gone (woo hoo!)  On the other hand, my energy has also improved, and I’m certain that’s at least partly from one of the supplements I’m on.  But could it be from the diet too?

I’d broken my own rule and tried many things at once.  Unlike any time before, these multiple treatments were all recommended by my trusted naturopath, plus they were recommended in books I’d read and by people I’d met online.  Everyone said that this stuff was too important to wait, so it should be done simultaneously.  I believe they’re right, but that doesn’t lessen the mystery.

I’m continuing to spend a lot of time and effort following this new diet, because I’m sure that even if it’s not having an immediate effect, it will help in the long term.  As for the many, many supplements, I’ll continue those for now.  Something is working, and since I can’t be sure what it is, I don’t want to eliminate anything.  My naturopath’s plan is to remove me from all of them over time, and to even lessen the dietary restrictions, so I’m hopeful that one day it won’t matter at all what’s working.  Still, I’m curious: which treatment might be helping me?  And could one of them be slowing down my recovery?

2 Comments | Decisions, Expectations, Frustration, Insensitive, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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!

8 Comments | Educating, Frustration, Healthcare, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

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.

Leave a Comment » | Expectations, Limitations, Medication, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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