Why too much strength can be bad

November 20, 2012

When I had to leave my job last year, I expected everyone to be supportive.  The responses shocked me.

Yes, my close friends and family were very supportive.  Really, except for my sister (but there are other issues there), I couldn’t have asked for more.  It was amazing.  The shocking part was the number of people who seemed surprised when I left my job.  Many asked why I was leaving; it had never occurred to them that it could have been because of my health.

Over the years I’ve put on a brave face.  I do this partly because I don’t like to dwell on all the health crap.  I like to focus on the better parts of my life.  I do this partly so people don’t get annoyed that I complain too much.  I also do this partly because I feel like if I let my guard down and give in a little, that I’ll end up giving in a whole lot, and I won’t be able to keep things in control anymore.

I thought of that just now when I saw this on Facebook.  It’s so true.  I work hard to “keep it together,” to not dwell on the shit I deal with daily, and to appear ok.  And that means that most people have no idea what I deal with, even in the smallest way.  I’m not looking for every person I know to check in on me constantly, but I suppose I need to let them know at least a little bit about what’s happening.  After all, how can I expect to raise awareness when even the people in my life don’t realize how sick I am?  And on a much simpler note, I need to let people know so that they’ll understand that sometimes, I really just need a hug. Being strong is good, but some days, a hug makes all the difference.

8 Comments | Educating, Expectations, Isolation, Kindness, Rants, Support | Permalink
Posted by chronicrants

The rare CI benefit: helping others with a recent diagnosis

November 13, 2012

There aren’t many benefits to dealing with chronic illness.  I can only think of two.  The first is the one we all hear about constantly: a greater appreciation for what we do have, a better view on life, etc. etc. etc.  Sure, that’s all true, but hearing it gets tiresome, because it’s usually said with the implication that it makes all of the CI crap worthwhile.  I disagree.  I’d gladly give up my great insights if it meant greater health.  That’s a big reason why I started this blog.  But I digress.

The other benefit is being able to help others who are dealing with new diagnoses, which is what I did yesterday.

The first time I really experienced this was several years ago when my mother had a bad fall that resulted in multiple broken bones and kept her mostly off her feet for several months.  She became very grumpy, and my father had trouble transitioning to the role of caretaker.  I sat my mother down and explained that she needed an attitude change, like actually saying “thank you” occasionally, and not taking her frustration out on others.  Several times she started to say “But you don’t know what it’s like to be in so much pain….”  Then she’d remember who she was talking to.  She couldn’t use excuses with me, and so it forced her to confront her problems head-on and to address them.  I was also able to use my experience to help my father be a better caretaker.  After our talks, they did much better.

This week is less emotional at the moment and more practical, but I can see that the emotional parts will come soon.  A friend just got the official diagnosis that her son has autism.  She has been waiting for these evaluation results for a long time, and throughout the wait she spoke as if she already knew the results would be positive.  Of course, there’s a big difference between knowing and knowing, and she’s having a tough time now that it’s official.  We spent an hour and a half on the phone yesterday.  She griped about how poor the system is, knowing that I understood.  She vented about how frustrated she is trying to get answers, knowing I’d understand.  She didn’t talk about her feelings regarding the diagnosis, but I know she’s still processing that.

After a lot of complaining about our broken healthcare systems, my friend mentioned how impossible it is to understand health insurance plans.  That’s when she first told me that she’s in her open enrollment period, meaning that for a short time she can change her plan if she wants to, and she’s lucky enough to have two options through her job.  Unfortunately, it’s possible that neither option will cover her son’s needs.  Boy am I glad she brought this up!  I told her that I was around to help any time she wanted, but she just sounded so overwhelmed that I threw out a few off-handed comments about various health insurance provisions and, sure enough, one caught her attention as something she’d read but not understood.  For the next half hour we just focused on health insurance.  I explained deductibles, co-insurance, and out-of-pocket maximums.  I explained the way doctors can sometimes get exceptions to the coverage rules.  I covered a few of the things that might change in 2014 as the ACA goes into effect.  I told her what to ask when she calls the insurance companies’ customer service lines, and what kinds of notes to take.  I told her that if they said they would cover something, to insist that they send her that statement in writing.  We didn’t cover everything, but we covered a lot.  And I promised to come to her house next week to read over the paperwork myself, so see if I might pick up on something that she wouldn’t know to look for.

Having chronic illnesses sucks, no doubt about that.  Again, I’d gladly give up all of my insights if it meant better health.  Still, if I’m going to be stuck with this bullshit in my life, I’m glad that I can at least use it to help a dear friend.  She has a tough road ahead of her, and she knows it, but at least by the end of our conversation she sounded a bit less overwhelmed, a bit less terrified, and a bit more in control.  She is a smart, caring person, and a great mom.  I know she’ll do right by her son.  And I’m glad she can focus on that now instead of studying the fine print of health insurance paperwork.

7 Comments | Educating, Expectations, Frustration, Healthcare, Isolation, Kindness, Raves, Support | Permalink
Posted by chronicrants

So happy I could cry: I finally have great-seeming health insurance

November 9, 2012

I’ve long since given up on going out on a Friday night.  If there’s a special event, like a friend’s birthday, then I’ll make the effort when I can, but otherwise, I just stay in.  I hope that changes one day, but for now, paying bills is the same to me on  Friday as on a Wednesday.

So I was going through my bills and other paperwork tonight, and I came across my new health insurance handbook.  It arrived in the mail earlier this week and I hadn’t gotten to it.  Unlike most people, I actually read these things.  Plus, I went to my PCP’s office today to show them my new insurance card and arrange a referral for my rheumatologist and they said I didn’t need a referral, so I wanted to make sure for myself.

I started flipping through the handbook, figuring I’d do a thorough reading later, but then it really caught my attention.  You see, I’ve always had employer-provided HMO plans.  With these plans, PCPs (primary care physicians) must give referrals for all specialists, and I pay premiums and co-pays for everything.  I’ve been lucky to have plans that didn’t have deductibles or co-insurance.  It was a very restrictive system, but it was the only one I knew.

That’s why I was shocked to find out about my new plan!  Now, I haven’t used any of these services yet, so I can’t be sure if they’ll work out the way they’re supposed to.  And I don’t know how long I’ll have this plan.  For one thing, I appealed my denial of medicaid, so I could end up with that instead of this.  And of course that doesn’t compare to the uncertainty of the long term disability insurance mess.  If I get the insurance coverage when we appeal, then I’ll get my old health insurance back.  I’d rather keep this new insurance, I think, but I definitely need to win that appeal so that I have an income.

I was accepted for this new plan despite my pre-existing health problems because Massachusetts rocks, and it was given to me without having to pay premiums because I have no income and Massachusetts rocks some more.  Believe me, I know how lucky I am!  But I was still shocked to read the details of this plan.  I can see specialists WITHOUT A REFERRAL!!!!  I feel like I’m dreaming.  This means that I don’t have to worry about whether or not my PCP agrees with my decision to see a certain doctor!  My big issue now is that I need to find a new endocrinologist, since my last one dumped me for being the cause of too much paperwork and too many expensive tests.  I’ve been worried about finding someone who practices what I think is best approach based on the research I’ve done.  Then, once I find them, my PCP would have to approve…. but not anymore!  I figure if I can see someone soon, then even when/if I get my old insurance back, my PCP would be more likely to go along with it because I’d already have seen the new doc (or she’d be pissed, in which case I’d find a new PCP.)

Even more amazing, there are no co-pays for visits, and the co-pays for meds are incredibly low.  Now again, this is a plan for people who have no income, so I know this isn’t what everyone gets.  Still, it’s amazing to me that they did it right!  They are offering free coverage to people who can’t afford to pay, so that we don’t get really sick and end up costing even more money to them later.

It’s amazing, almost unheard of, but I think I’ve finally encountered a health-related, government-related system that isn’t broken!  I sure hope it turns out to be as good as it seems, because right now, it seems too good to be true.

I’m sure all of you readers in other countries are wondering what all the fuss is about.  I just can’t even tell you.  Click on the “Healthcare” category in the sidebar on the right (you might have to scroll up or down) and you’ll start to understand just a little bit.  It’s really lousy here in the U.S when it comes to health insurance.  Most of it is linked to employers, and many people choose jobs based less on their passions, the work, or the job potential than on the health insurance that’s provided.  I really hope this ray of sunshine lasts for me, and that the new Affordable Care Act helps things!

6 Comments | Educating, Expectations, Healthcare, Medication, Politics, Raves, Support, Unpredictable | Permalink
Posted by chronicrants

The chronic illness-depression connection

September 28, 2012

A friend of mine does suicide prevention work.  And she needs your help.

From time to time I pass along information to my friend that I think might be useful.  Sometimes it’s a blog post, or a tweetchat, or just an idea.  Other friends do it too, to give her ideas for new angles.  Recently I sent her a blog post from someone else’s blog that I thought might be helpful and she wrote back and asked if I’d give my personal perspective on living with a chronic illness.  I’ve always been completely open about my health stuff when someone asks, but I don’t talk about it too much otherwise.  I’m not trying to hide anything, I just want to focus on things other than my health sometimes.  So when we met up this week, I found that first I had to explain what it really means to have a chronic illness.

We met up in person to talk about chronic illness and its intersection with depression.  This is an area that gets talked about a lot in chronic illness circles, but I don’t hear much about it in mainstream mental health care.  As it turns out, they do talk about it in her office, but she didn’t feel they’d examined it thoroughly.  So we talked for over an hour and we covered a lot of areas.  We talked about the depression that is a part of the illness, the depression that’s a side effect of medications, and the depression that comes from the pain, isolation, frustration, etc.

I talked about being told the symptoms are all in our heads, about the self doubt, and about not having a diagnosis for years or decades.  I talked about the strain it puts on relationships and the difficulty dating.  I talked about the lack of control over my present and the lack of control over my future.  I talked about rare conditions taking longer to get a diagnosis, but then not having support groups available after diagnosis because of the condition’s rarity.  We talked about chronic illness causing PTSD.  We discussed autoimmune-type diseases versus more well-known chronic illnesses such as heart disease or diabetes.  We talked about society’s judgment on us: society saying that we caused our illness or that we’re worthless because we can’t work at a job, etc.  We talked about stigma from government and from individuals.  I talked about our own feelings of worthlessness.  I talked about wanting to contribute to society in some way.  We discussed how hard it can be to connect with family and friends when we can’t do “normal” activities.  We talked about how hard it is to “keep a positive attitude” when the truth, the reality, is that things will not get better, and they will most likely get worse.  And of course we talked about the 5 stages of grief.

She was blown away by all of this.  When I talked about being in pain all the time until a few years ago, it became clear that she hadn’t realized that it was literally all the time.  When I talked about the relief of having a few minutes at a time without pain, she was shocked.  This is a woman who has always tried to understand, but she simply didn’t because no one had ever really explained it to her.  Now she’s learned a bit more.  And of course, she wants to help.  She can not help with the physical symptoms, but she can create practitioner trainings and outreach programs and also write on her blog in order to help our mental health.  And in return, we can help her.

So here’s where you can help.  I am only one person.  I told my friend about my own experiences and about those of some others in the community, but of course I can’t talk about everyone, nor should I.  Instead, I encourage you to talk about how your chronic illness affects your mental health and vice versa.  Write a line or 2 or 20.  Comment here, email me (msrants at gmail dot com) or write to me on Twitter (@CIRants) and I’ll be sure she sees it.  This is a good chance to assist someone who wants to help our community, so let’s give it our all!

Part of the email from my friend:

In my work, we do talk about chronic pain and illness in relation to suicide, but we haven’t done a thorough job of examining the issue, I believe because we’re not sure the best approach to take…. I’d love to talk with you about ideas/approaches for addressing this issue and possible interventions/programs. Or, if you know of folks you think would be good to talk with – people living with chronic conditions, health care providers, etc. who I should talk with, please let me know.

7 Comments | Educating, Healthcare, Isolation, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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