Spreading the word on chronic pain and chronic illness

February 13, 2012

I found this great web site the other day, How to Understand Someone With Chronic Pain.  This is one of the more accurate and insightful sites I’ve seen.  The problem is, it only works if people read it.

I emailed this site to some specific people, I posted it on Twitter and on Facebook.  I’ve told people about it.  But I can’t force anyone to read it.  I’ve seen other good sites and videos, but again, they only work if people read the pages and watch the videos.

For the people important to me, I think that if I email them the site and tell them that it’s important to me, they’ll read it.  But then, these people already have a better understanding than most, since they’ve watched me deal with this for 20 years (or as long as they’ve known me.)  How can I get their friends and acquaintances to read it?

Really it all comes back to the same old issue: ignorance in the general population.  I’m tired of people suggesting that I’ll feel better if I get more exercise, or that I just need a good night’s sleep, or that I can’t really be doing that badly if I’m acting or looking so good.  I know that at some point I have to ignore people and just not care, but that can be very difficult to do.  I’ve learned to ignore strangers, but what about friends of friends?  What about coworkers?  It gets complicated.  We all have our thresholds, and lately I’ve been hitting mine.  A lot.

There’s no real point here, only that I hope everyone who reads this will email/post this site, or a similar one, to the people they know so that we can spread the education.  There are millions of people with chronic illnesses; we can’t pretend otherwise.  Let’s spread the word!

 

It would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

2 Comments | Educating, Frustration, Insensitive, Intrusions, Isolation, Rants, Raves | Permalink
Posted by chronicrants

If you think it’s so easy, then *you* try it!

January 30, 2012

What is it with people saying that what I have to do really isn’t so bad?  Unless you’ve gone through it yourself, you just don’t get to say that.

The latest is that I think I need to try a gluten-free diet.  I’ve been putting this off, but from what I’ve researched, it’s worth a try.  Nothing else is working, after all.  I figure I’ll live it up for a couple more weeks, until I see my PCP for a checkup, and then I’ll talk to her about getting a referral for a nutritionist, because I sure as hell am not doing this myself.

I was telling all of this to a friend, and she said that getting a nutritionist is good, but that really, going gluten-free isn’t all that hard.  Now, we’ve been friends for ages and I love her, and I know she can be a bit know-it-all, but that’s just who she is and I accept it.  But today was annoying.  Going gluten-free is a big, big deal for me.  I have such a restricted diet already, and this will make it harder.  Cooking at home will be a pain in the ass.  Even worse, going out to eat will be horrible.  Yes, there are dishes at restaurants that appear to not have gluten-containing ingredients, but if they aren’t marked “gluten free” then they could be contaminated.  She didn’t get it.  And what about eating at other people’s homes?  When I go to a party, I can avoid the bowl of chips, and I can ignore the cheese and crackers, but what about main dishes?  Will I have to eat at home before every party?  Ok, I do that now from time to time, just in case, but to always do it?

Now, I know there are plenty of people on gluten-free diets.  I know they are successful at them.  I am not saying that it can’t be done.  I’m just saying that, especially at the beginning, it will be very difficult, and I resent being told that it won’t be by someone who’s never done it.

It’s like when someone tells you how to compensate for not being able to do stairs, even though they’ve never been in that position.  You can’t say it’s not hard unless you’ve done it yourself, and even then you can’t assume that your experience applies to everyone else.  We’re all different.

So I’m being patient, because I love my friend and I know that she only means well.  She’s trying to help.  But damn, it can get annoying to hear that kind of stuff.

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Leave a Comment » | Educating, Frustration, Insensitive, Intrusions, Kindness, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

Political interference

November 27, 2011

Politics affects all of us.  It has to.  Government builds and maintains infrastructure (roads, mass transit) and regulates taxes.  Government creates laws and enforces them.  Government controls the big picture and also a lot of minutiae.  It must play a role in our lives, but I question how big of a role.

Because of my illness, I rely on my government to create and enforce non-discrimination laws, to keep the roads and sidewalks passable, and to ensure that the medications I take are safe for consumption.  These are all important.  However, I feel that sometimes government goes too far in “protecting” its citizens.  I will write more later, but for now, think about medical marijuana and assisted suicide.  How involved should the government be?

In the United States, one big problem is that some states have legalized each of these, but the federal government does not recognize them as legal.  That sets patients and doctors up for potential problems, and that’s not fair.  It must be decided once and for all whether or not states can regulate either of these areas.

As far as marijuana goes, I won’t get into whether or not I think it should be legal for general use.  However, for medicinal purposes it should be treated like any other drug.  There should be studies to determine its efficacy, then it should be subjected to an FDA approval process to ensure it is safe for medicinal use.  Why not do this?  After all, it is no more harmful to a person than alcohol, cigarettes, or many prescription medications.  It is not dangerous to non-users as long as second-hand smoke is avoided (it could follow the same rules as cigarettes) and people do not drive under the influence (it should follow the same rules as alcohol.)  I would happily accept government regulation of medical marijuana so that I could trust that it came from good sources.  I can not accept, though, that the government will not even consider it.  Given the choice between the side effects from marijuana or the side effects from prednisone, I’ll choose pot, thank you very much.

Now, as for assisted suicide, the idea that suicide is illegal is ludicrous.  A person who wants to commit suicide should get proper counseling, of course, and be of sound mind.  But if a terminally ill person is in a lot of pain and wants to end their suffering a few weeks early, why shouldn’t they be allowed to make that choice?  And if they are going to end their suffering early, shouldn’t it be done with the aid of a doctor, so that it is done in the least painful way possible?  I simply can not imagine why people have a problem with this.  And I certainly can not see any reason why the government should be regulating it.

These are just my opinions, of course.  Everyone needs to do their own research and their own thinking.  For me, though, the answers seem very clear.  My opinions are strong, so I will definitely be elaborating on these in later posts.  For now, I just needed to vent a bit.

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6 Comments | Educating, Frustration, Healthcare, Intrusions, Medication, Politics, Rants | Permalink
Posted by chronicrants

How broken is our health care system?

November 16, 2011

It is important for everyone to have doctors they feel comfortable with.  For those of us dealing with chronic conditions, it is especially important that we have a medical team we trust and who respects us.

Sometimes I think about leaving the Boston area (the climate here is horrible for me) and it saddens me to think about leaving my family and friends.  But then I think about having to get new doctors, and that terrifies me.  It took me many years to get doctors I like.  In the past year I have had to find a new PCP twice and that has been a horrible experience.  I can not imagine having to start over with a new rheumatologist, a new endocrinologist, etc.  Still, when/if I move, I know that I will have to build up a new medical team.  But that will be my choice, based on my actions.

What upsets me is being forced to change doctors!  To be clear, this is not happening to me personally, but it may be happening to a lot of people in my community soon, and that is very disturbing.

The current health care system is broken on many levels, in many ways.  I would like to say this is an isolated issue, but sadly, it’s not.  According to this article and other reports, a lot of people may have to find new doctors because of a breakdown of negotiations between an insurance company and a hospital.  Corporate negotiations will force people to get new doctors!  How horrible is that?  Now, to be fair, I’m sure patients will be more than welcome to stay with their current doctors if they pay for the costs themselves, but realistically, how many people can do that?

I’m not saying I have all the answers (though I certainly have a few suggestions), but I do know that the system needs to change so that when negotiations break down, patients aren’t the ones being harmed.  It is hard enough to be sick, then to find good doctors, and to negotiate the maze of insurance rules and medical terms and tests and procedures.  To then have that all taken away and be forced to start over, that is criminal.  The Blue Cross and Tufts Medical negotiators must work this out and they must do it now.  There is simply no excuse.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

Leave a Comment » | Educating, Expectations, Frustration, Healthcare, Intrusions, Politics, Rants | Permalink
Posted by chronicrants

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