Feeling trapped

July 6, 2012

It’s probably been only a few weeks, but it feels like so much longer.  The heat rose, and the dew point rose, and I started spending more time indoors.  Now I feel stuck.

When you live in a climate with long, cold, snowy winters, I suppose it’s natural that people want to spend their summers outside as much as possible.  The problem is, I can’t be out in the heat and sun.  This is really hurting my already-sucky social life.  I can’t seem to make plans with anyone outdoors, and there isn’t much happening indoors, especially since my new diet makes it nearly impossible to go out to eat.

Part of this is surely in my head.  I could probably find something to do and make plans and people wouldn’t mind staying in doors.  Probably.  Maybe.  It’s hard.  Tomorrow a friend is having a bbq, but it’s supposed to be hot and humid and I just don’t think I can go.  If only it was going to be cooler out….  Next week a friend and I want to meet up for lunch.  I’ll bring food, since I won’t be able to eat at most restaurants, and we’ll picnic.  But again, this only works if it’s cool enough and not raining.  It’s getting harder and harder to find free, or at least inexpensive, things to do indoors.

I’m sure this is a common problem for heat-sensitive people.  How do you handle it?  What activities do you do indoors?  How do you explain it to people?  I need to get out of the apartment occasionally and be around other people!

Leave a Comment » | Educating, Expectations, Frustration, Isolation, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

The subjectiveness of a “good” day

July 2, 2012

Sometimes I write about what a great day I’ve had healthwise.  Sometimes I write about a lousy day.  Right now, I’m not sure what I’m having.

One year ago I was struggling to get through each day.  9 months ago I left my job because I just couldn’t manage.  6 months ago I couldn’t read books because I always fell asleep.  I needed naps many days.  I could barely socialize.  3 months ago I had slightly more energy.  I wasn’t napping as much.  I could go out more, but only slightly more.  And today I don’t know what my limits are.  I know I have them, but I don’t know how to define them.

Ideally I wouldn’t have limits, or at least I’d have the same limits as most of my friends.  Chances are that I’ll always have extra limits, and I can probably live with that as long as they’re a lot fewer than what I’ve been dealing with in the last year.  The thing is, in the last year they’ve been changing so much.  Six months ago I wouldn’t have tried to visit with my grandparents for an afternoon and then come home, relax for a while, eat dinner, then take a walk in the evening.  But recently I did that!  For many people this wouldn’t seem like much: have a conversation for a few hours, relax for several hours, then take a 15 minute walk?  But for me that was huge.  I could probably do that today if it wasn’t so hot out and that’s exciting.  But I know I couldn’t do that every day, and not even necessarily any day.  So where’s the line?

I just don’t know.  The 1-10 scales aren’t accurate because they depend not only on memory and perception, but also on mood and on the status of that exact moment.  I could keep track of how I feel each day in a journal or using an app, but it still wouldn’t tell me what my limits are.  Clearly the big problem is that I’m afraid to push my own boundaries.  After so many bad results, now I want to play it safe.  The result is that sometimes I don’t realize that I could do more, or I know I could do more but I don’t know how much more.  A “good” day is now one where I don’t feel lousy.  I need to change that, to make it so that a good day is one where I do more than I did last week, and where I still don’t feel lousy.

I guess that’s something to aim for tomorrow: a new kind of good.

Leave a Comment » | Expectations, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Blown away by support

June 27, 2012

I did the math.  Then I did it again.  Sadly, it just didn’t add up.

Let’s see, there’s rent and phone and electricity and gas for the stove.  There’s groceries and health insurance and medications and gas for the car.  There’s all the other little expenses that pop up, though not all that many any more, since I’ve been cutting back a lot.  As if that’s not enough, there’s the new naturopath and new tests and new treatments that aren’t covered by insurance.  There’s the lawyer.  And there’s no income.  I have savings, but they won’t last forever.

I was turned down for long term disability insurance.  I have hired a lawyer to appeal the denial, but of course that costs money.  If the appeal works, I would get paid in February or March and they insurance company would pay me everything they have owed me to that point – almost a year’s worth of payments.  If the appeal doesn’t work, then I’m totally screwed.  Great.

At best I need to find a way to pay for everything until March.  At worst I need to cover a much longer period of time.

My savings can last a while, and actually, if I didn’t hire the lawyer or try new treatments, I might even be able to make it last until March. Well, at least until January.  Unfortunately, I need the lawyer and I must try to improve my health.  I spoke to my parents and we agreed that I’d ask my grandparents.  My parents said they’d find a way to help me if my grandparents couldn’t, but I know it would be hard for them.  They are finally near retirement and I’d hate to see that put off for this.  Plus, my grandparents have offered to help me many times.  They want to help me, and since they can’t physically do anything, they want to financially help.

Now, I know that my grandparents have some money.  They aren’t rich, but they have enough to take care of themselves and to leave a bit to their kids.  Still, I hated to ask.  Maybe it’s an ego thing, but I’ve never wanted to take handouts.  This time I had to admit defeat.  I simply need help.

Today was the day to ask.  My stomach was in knots.  I was nauseated.  I couldn’t eat lunch (a rarity for me!)  My biggest fear was that they’d want to help (because I knew they would) but that they wouldn’t be able to give me as much as I need.  I figured $10,000-$12,000 would cover my gap.  Could they afford that much?

I steeled my nerve and began by explaining the insurance denial.  It just happened a few weeks ago and I hadn’t told them yet.  I hadn’t wanted to worry them.  Then I told them a bit more about my treatments, filling in some details from what I’d told them before.  Then I started to explain about the money.  Before I could finish asking for help, they both said that they’d give me as much as I need.  I hadn’t even mentioned the numbers yet.  For now they wrote me a smaller check, and said that as soon as I spent that, I should come back and they’d write another.  No hesitation.  No asking me what my expenses are.  I said I could pay them back if I win the insurance appeal and they adamantly said no; they don’t want to be paid back for this.  They just want to help me.

The only negative response?  That I didn’t come to them sooner.  Actually, my grandfather was a bit angry that I didn’t ask for money a while ago.  I had to explain that I didn’t know it would be an issue until 2 weeks ago, and even then I hadn’t figure it all out yet.  He was only mildly placated.  He made me promise over and over and over that I would tell him immediately if I needed any more money, or even if anything else changed with the insurance and of course with my health.  The last thing he said before I left was reminding me of that promise.

Our family is far from perfect.  I’ve written before about my strained relations with my sister.  And there are plenty of other issues too.  But I’ll say this: we all support each other, no questions asked.  Having the financial support helps a lot.  But having the emotional support makes me feel like maybe I can handle all of this crap after all.  I could never put a price tag on that.

P.S. Don’t my grandparents just have the best smiles?

Leave a Comment » | Expectations, Kindness, Limitations, Raves, Support, Thoughtfulness | Permalink
Posted by chronicrants

Wondering how to eat

June 25, 2012

As the next step in my last-ditch effort to improve my health, I am starting a new diet.  This diet is titled “The Anti-Inflammatory Diet” (if this link doesn’t work for you, see below) and should really be called the “Eat the Same Thing Every Day Diet.”  So here’s what I’m asking from you:

HELP!!!!!!!!!!!!!

Some people will look at this diet and think it’s easy, but there are a few things to consider:

  1. This was a huge accomplishment for me.  Until 3 years ago I could hardly cook.  Now I can cook a handful of meals decently and a few really well.  And none of them will be allowed on this diet.  Learning those took a long time and now I need to start over.
  2. I don’t like to cook.  I will do it because I have to, but I won’t spend hours at it.
  3. Some people have a natural ability to understand which foods can be substituted for others, and which flavors will go well together.  I don’t have that.  I have the opposite of that.  I have no clue.  I can’t make things up.  I need solid, explicit recipes.

So yeah, it’s a bit intimidating and overwhelming.  Oh, and one more thing is that I won’t use the oven for the next few months.  I react badly to heat and humidity, both of which Boston has plenty of in the summers.  I’ll use the stove, but I won’t stand over it for long periods of time.  Last summer I did 90% of my cooking in the crockpot and I’d love to do that again, so crockpot recipes are especially welcome.  But at the moment, I’d love anything that will add to the contents of my currently-pathetic refrigerator.

Having said all of that, PLEASE PLEASE PLEASE send me any recipes or useful web sites that could help me with this new challenge.  This is the first week and I’m already out of ideas!

I’m looking for three things:

  1. Main courses
  2. Snacks besides fruit and nuts, especially snacks that can survive a day in a purse
  3. Easy small meals for when I just don’t have the energy to cook, and I’ve already eaten whatever was in the freezer.  I used to do eggs (they’re on the bad list now) or oatmeal (that’ll be my breakfast every day now) with peanut butter (also on the bad list.)  I need something that would be that level of effort.  You know, for days like this.

I will be unbelievably grateful to anyone who can help me out.  And if cooking isn’t your thing either, any messages of support will also be gratefully accepted.  You can comment here or tweet me @CIRants or email me at msrants at gmail

This isn’t about complaining, it’s just about being overwhelmed.  I’ll do whatever it takes to make this work… as soon as I figure out how.

Thank you in advance for your ideas!

The Anti-Inflammatory Diet:

  • No gluten
  • No dairy products
  • No refined sugar products
  • No Corn, tomatoes, peppers, eggplant
  • No pork, cold cuts, bacon, hot dogs, canned meat, sausage, shellfish
  • No alcohol, caffeine-containing beferages, soy milk, soda or fruit drinks that are high in refined sugar
  • Foods high in fats and oils, including peanuts, refined oils, margarine, shortening, hydrogenated oils
  • Additional specific foods to avoid: oranges, corn, creamed vegetables, soybeans and other soy foods, peanuts, peanut butter, cashews, cashew butter, mayonnaise, spreads, canola oil, ketchup, mustard, pickle, relish, chutney, soy sauce, barbecue sauce, white or brown or refined sugars, honey, maple syrup, corn syrup, high fructose corn syrup, all artificial sweeteners, all candy

***Note: This diet was suggested to me by a licensed naturopath.  I am not suggesting or recommending it for anyone else.  To be honest, I’m not certain that it will even work for me, but I’m taking a shot at it.  If you think it makes sense for you also, please speak to a trained practitioner.***

4 Comments | Frustration, Healthcare, Limitations, Medication, Support, Symptoms | Permalink
Posted by chronicrants

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