Why I really want to shovel snow

February 10, 2013

We all have chores that we hate to do, but there’s something about having to ask others to do them that really changes that attitude, at least for me.

I have always hated having to ask others for help, and I especially hate depending on them when I know it’s something they’d Blizzard 2013rather not do either. That’s why I’ve turned down my mother’s offer to clean my apartment. I know she would hate it, and she really doesn’t have the time for it. So I pay someone. I pay someone to come once a month to do the things that I can’t do.

Now the truth is, when I was able to clean, I didn’t do it as much as I should. At this point, I’d gladly do it. Ok, maybe not gladly, but you know what I mean. Unfortunately, dragging a vacuum is too painful, stretch and dusting and grasping a cloth to dust would hurt, and bending over the tub to scrub it out would knock me out for days.  And then there’s the energy it would take, energy that I just don’t have to spare. I know that I can’t do it now, but I sure would like to.

Shoveling snow is the same. I used to think of shoveling as a chore. I live in the Boston area, so it’s not like this was a rare occurrence. I did it because I had to, but I didn’t enjoy it. And now? Now I dream that I could.

We got more than 2 feet of snow this weekend. Since I rent my apartment, I thankfully don’t have to worry about shoveling out the stairs to my building or the sidewalks, but I am definitely responsible for shoveling out my car if I ever want to drive it again before the spring thaw.

After spending two days indoors, I felt antsy yesterday, so I put on many layers and went for a slow walk. I chatted with neighbors as they shoveled out their cars and driveways, and I was amazed at the envy I felt. It’s backbreaking work. It takes hours. It’s thankless. And I wanted to be doing it. The jealousy practically dripped from my mouth as I commented on what a good job each person was doing.

I’m lucky. A neighbor had offered to help me out. And several of the other neighbors who I had just met on my walk joined in. I had been friendly to them, and they saw me help someone whose car was stuck (since I couldn’t shovel or push, I drove the car while the owner and others pushed it.) I guess it was a bit of karma or something. Or maybe it was the damsel in distress effect (let’s face it, there are men who just love to help out a “helpless” woman and I told them that I had a “physical condition” that stopped me from shoveling.) What it was, the big relief is that my car is free now. Still, I worry about what happens when I drive someplace. If I come back and there’s no free spot, I won’t be able to shovel out a space on my own. And what about the next time it snows?

I’m not naive. It could be much worse. But at the same time, this is frustrating and stressful for me at a time when I really don’t need more frustration and stress. And it won’t go away. I continue to hope that my health will improve. One day I may be able to dust, but my guess is that shoveling snow will always be beyond my abilities. I want to be self sufficient and right now that’s not an option. Some days I can accept that, some days I can’t. I guess this is one of the days that I can’t.

How are you handling the winter weather?

2 Comments | Expectations, Frustration, Isolation, Kindness, Pain, Parking, Rants, Support, Symptoms | Permalink
Posted by chronicrants

“A great doc, but you didn’t hear it from me”

December 6, 2012

Our medical system is seriously fucked up.  I’m sure this isn’t news to you (and if it is, you can start learning about it here and here.)  Now, I know that some parts of it work well.  I used my new health insurance for the first time today, and that was great.  But in so many other ways, it just doesn’t make any sense at all.

What do you think is the point of healthcare?  Personally, I think it is to maintain good health, and to achieve improved health when needed.  Unfortunately, healthcare here is a business, so to the people in control, it’s about making money.

I saw my rheumatologist today, and of course at one point we talked about how I need a new endocrinologist since my old one dumped me.  He didn’t like that I require so many expensive tests, so much effort, and so much insurance-related paperwork.  I asked my rheumatologist for her advice.  She confided in me that there were a few in her hospital system that I should stay away from, and she asked me not to tell anyone that she’d said that.  Ok, I get that.  She shouldn’t bad-mouth colleagues.  No problem.  I would never say a word.  No one should bad-mouth a colleague – it’s bad etiquette – but when it’s a matter of someone’s health, it’s worth it.  All good, right?

But then she considered things, and finally told me about a center at another hospital that specializes in thyroid work, which is what I need.  She said multiple times “but you didn’t hear it from me,” and I assured her that I would never let on.  If I thought that writing this would in any way haunt her, I’d never write a word of it.  The last thing I want is to hurt someone who has fought on my behalf many times, helped me immensely, and gone above and beyond.

So here’s why I’m upset: why should a doctor get in trouble for telling a patient about a treatment center that could help them?!?  Think about that.  She would get in trouble because she suggested that I go to a different hospital.  She is not telling me that her hospital sucks.  She is not telling me to leave her practice.  She is not treating me badly. On the contrary, her primary concern is my health, and for that reason she is suggesting that I see the practitioners who are most likely to help me improve my health.  Once again, her focus is on my health!

And that’s why our system is completely fucked up.  Because a doctor can get in trouble for helping a patient improve their health, if it means sending the patient (and therefore the patient’s money) to another center.  Wrong wrong wrong.

So while we’re at it, PLEASE let me know if you can recommend a good endocrinologist in the Boston area.  I will consider my rheumatologist’s suggestion, but I don’t know yet if that place will offer what I need, or if they’re taking new patients.  Please send any and all suggestions.  I need someone who does thyroid work, especially Hashimoto’s.  Thanks!

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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
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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

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