This week’s big chronic illness to do list

July 18, 2012

Well that was an unexpectedly long blogging break.  You’d think that after the big health insurance scare things would have gotten easier, but instead more shit piled on.  I won’t go into details now.  Instead, here’s my current checklist of health-related things I need to work on this week.  Of course there’s regular stuff too, like paying bills, doing laundry, and visiting an ill relative.  This is just the health stuff.  People think it’s all about taking pills.  If only.

  • Get infectious disease testing done.  To get testing, see a specialist.  To see a specialist covered by insurance, get a referral from PCP (primary care physician.)  To get a referral, have all recent specialist records sent to PCP.  To save time, since I am about to lose my health insurance, bring records to PCP myself.
  • Read stack of materials received at latest naturopath appointment.
  • Get food/mold/toxin/etc. testing done.  In order to get this covered by insurance, get a doctor to order the test.  Naturopaths aren’t licensed in Massachusetts, so find another doctor to do this.  Waiting to hear back from one specialist.  If she can’t or won’t, ask another specialist.  If he can’t or won’t try, the PCP.  If she can’t or won’t, get PCP to give referral to another doctor.  If she won’t, then consider spending $1100 to get test done without a doctor’s order.  If I do get a doctor’s order, call the testing company to figure out how to get the blood drawn at a lab that the insurance will cover, even though none of them seem to do it.  If this can not be done, consider spending $1100 to get the test done.
  • Call my state senator about getting the bill to license naturopaths out of committee and ready for a vote in the state legislature.
  • As part of the LTD appeal, talk to a former coworker about having her write a letter describing the poor condition I was in while I was still working.  I need them to understand that I was working, but even then I was not functioning well.
  • Find out what happens to my health insurance if I have COBRA and I win my LTD appeal.
  • Find out what happens to my health insurance if I have MassHealth and I win my LTD appeal.
  • Apply for SSDI.  More realistically, begin figuring out what is necessary to apply for SSDI and take first steps.
  • Prepare to apply for MassHealth (Massachusetts’ version of Medicaid).
  • Talk to “Joan” about what happened with the LTD company (see the big health insurance scare for details.)  She was supposed to call me back and hasn’t yet.
  • Get new orthodics fixed.
  • Find one of the few pharmacies that sells the specific supplement I need and then drive over to get it.
  • Take new medications.
  • Keep track of dates new meds are started and any effects, whether good or bad, over the coming hours and days and weeks.
  • Continue taking all other meds.  Be careful about timing to make sure there are no conflicts.  Take first med upon waking, then exactly one hour later eat breakfast, and immediately after breakfast take the rest of the morning meds, etc. etc.
  • Do physical therapy daily.
  • Take a walk for exercise daily.
  • Follow special diet carefully.  Go food shopping more often.  Plan meals well in advance.  Never eat out.
  • Track how I feel every day and how it relates to food, activity, stress, etc.
  • Be careful to go to sleep at the same time every night.  Wake up at the same time every day.
  • Avoid stress.  Or at least try to minimize stress and to handle it well.
  • Try to have a life outside of my illness.

And that, my friends, is why having a chronic illness is like a full time job, but with a lot more stress and no income.

What’s on your list?  Share your to do’s and spread the word.  Let’s show why it isn’t just sitting home and watching tv all day.

4 Comments | Educating, Expectations, Healthcare, Limitations, Medication, Rants | Permalink
Posted by chronicrants

Salt in the wound: losing health insurance

July 12, 2012

Apparently the universe saw my post from yesterday and said “Screw you!  We’ll make sure you’re not ‘bored’!”

Today was bad.

This morning I decided to call HR at my old employer again.  I started calling about a month ago to find out what my health insurance status was now that my long term disability claim has been denied.  The person with all the answers was out of the office indefinitely. The other, let’s call her Joan, wasn’t calling me back.  I figured I should try again today.  I looked at the clock: 8:56am.  Too early.  I read the news.  I read email.  I read random web sites.  I ate breakfast and took my pills.  I did more reading.  Nice morning, right?  As I was about to start my physical therapy, I realized I could finally call HR.  I couldn’t get Joan on the phone but I got someone else, let’s call her Ruth.  Ruth checked with Joan and came back to the phone, asking me, “Have you received a COBRA packet in the mail?”  And from there my day went to shit.

For those not from the U.S., let me explain.  While every other industrialized country provides universal health insurance to their citizens, the U.S. does not.  There is currently a new law that will expand coverage, but it does not cover everyone, and we must still pay for health insurance ourselves.  No, I’m not kidding.  It just make sure we won’t be turned down by the insurance companies.  And then there’s an election coming up and one of the presidential nominees wants to repeal that law, which will only make things worse.  But I could write an entire book on my thoughts about that.  So moving on….  Most of us get health insurance through employers.  Getting it ourselves, without an employer, is very expensive.  When I left my job last fall I got to keep my health insurance.  However, when my long term disability claim was denied, I lost my health insurance.  By law, I am entitled to COBRA.  This allows me to keep my health insurance for up to 18 months (possibly 29 months if I can prove disability) and all I have to do is pay exorbitantly high rates.

Obviously this is bad.  I’m ill so I have to stop working, my long term disability claim is denied, so now I have no income and no health insurance.  This is very very bad.  I start wondering how much COBRA will cost me.  $500?  $600?  And when does it begin?  Does it begin today?  When my LTD was denied a month ago?  When STD ended back in April?  I could owe $2000 in back payments!  Very very bad.

Ruth in HR didn’t know anything, and I can’t blame her – it wasn’t her job.  She promised that Joan would call me back, and asked would I be able to talk this afternoon?  That’s when I lost it.  I do not like to cry in front of other people.  I just don’t.  And I lost it.  I started sobbing about how I was freaking out and I just needed to know.  I’d been trying to reach Joan for weeks and she could call me any time, she could call me at midnight, I just needed to talk to her!  And through the sobs, I could tell that Ruth felt awful about it.

Later I ran into a neighbor I’m friendly with while I was doing laundry in the communal laundry room (with the phone by my side) and when he asked how I was doing, I started crying again.  How embarrassing!  I had good reason, but it was still embarrassing.

I spent the next 5 hours bringing the phone with me everyplace.  I got all the way to the bathroom in my apartment, then trudged back to the living room to get my phone and bring it with me so it would be nearby while I peed.  I took it to the microwave to heat up food.  I had it next to me while I researched my Medicaid (state health insurance for the poor and disabled) options.  I had it on my lap while I briefly thought about going back to work.  (Then I pictured what I’d have to do, and realized I wouldn’t last through the first week.)  I had it with me on the bed while I lay there and cried.  I skipped my shower, just in case.  I wanted to get that call.  Of course, she didn’t call.

As the end of the workday approached, I tried calling Joan and she didn’t answer.  So I called Ruth instead and asked to speak to the head of the department.  Ah ha!  Joan came on the line, apologizing profusely.

At this point I should interrupt myself and say that I don’t blame Joan.  She was covering for the person who normally handles this and the department was understaffed even before that person had to take a leave.  I worked with Joan when I had to set up STD and she was very nice, though hard to reach then too.  This is not her fault.  In fact, she has been sympathetic and kind through the entire thing.

So Joan came on the line and started by simply confirming that my LTD was denied and that I was appealing it.  And here’s where the story finally took an upswing.  But to understand it fully, I should mention that I have a big mouth.  It runs in the family.  My mother’s side are all talkers.  We kid each other about it, and my father’s side jokes about it too, finding us all amusing.  I’m perfectly happy to spend an hour or more on the phone with a friend and not even notice the time flying by.  I can be overly chatty, and sometimes it gets me into trouble.  Often I don’t know when to shut up.  But this time, it saved me.

Joan asked if the LTD company had given me a timeframe for reviewing the appeal.  A normal person would have said, “I haven’t filed the appeal yet, so no.”  Not me.  Oh boy.  No, me and my big mouth started in on, “Well, no, but even if they had I wouldn’t believe it, after they delayed my claim by several weeks and lost part of my file.”  She was horrified and angry and wanted the story, so I told her the whole thing.  And that’s when she told me something crucial that I wish I’d known earlier (but I guess it did make perfect sense once I thought about it): the insurance company has to answer to them!  My employer pays this company and expects their employees to be treated fairly.  And lucky for me, Joan is the person they report to.

To compensate me for my horrible treatment, she would immediately extend my health insurance for two more months as of today.

TWO MONTHS!  I could have fallen over!  I was shocked, relieved, happy, amazed.  This doesn’t fix everything, but it gives me some time, some breathing room.  Medicaid applications are processed in about a month, so I can apply several weeks from now and with any luck, if they approve it, I’ll have Medicaid when my employer-provided health insurance is cancelled.  Whew!

Oh, and as a bonus, she’s going to call the supervisor of my contact at the LTD company and discuss this whole thing.  I planned to address it later, after my claim was settled, but she’s doing it now.  Great!

I did a lot of crying today, which is unusual for me.  At times I felt alone and helpless.  I was angry, confused, and angry again.  Then somehow, unexpectedly, I got a small boost.  It won’t last long, but I’m grateful for it.  I’ll still lose my health insurance, but at least this time I’ll see it coming.

Now I just have to hope my lawyer can file that appeal quickly!

2 Comments | Expectations, Frustration, Healthcare, Kindness, Politics, Rants, Support, Unpredictable | 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

Long term disability insurance: Navigating a system that is designed to screw us

June 15, 2012

I’ve written about the roller coaster effect before, and it’s happening again now.  This time it’s both physical and emotional, not to mention financial.

In addition to all of the irritating, difficult, painful physical problems, I’m also dealing with bureaucratic crap.  I wrote last week that the long term disability insurance company is denying my claim for benefits, but it turns out that it’s worse than I’d thought.  As it turns out, they aren’t suggesting that I’m not ill.  Instead, they are saying that I’ve been sick for a long time and they see no evidence that it’s gotten any worse.  Basically, if I was well enough to work a year ago, I should be able to work now, too.  But how do you prove worsening fatigue?  I don’t have a blood test or MRI for that.

Then it gets worse.  According to the lawyer I spoke to (who came highly recommended by friends who used her for their own SSDI claim) I will have an extra problem because I did not see a doctor in the few weeks leading up to my leave from work.  In fact, my last appointment before leaving my job was 2 months earlier.  At that appointment my doctor and I discussed the possibility that I might have to stop working, but I don’t know if that was recorded in my medical records.  I think it’s time to cough up the money and get a copy of my own records.  I wish someone would have told me that life would be easier if I saw my doctor in person before leaving my job, instead of just speaking with her on the phone 4 separate times.  I’d have gladly done it, if I’d only known.

The lawyer talked about the many steps we would take to appeal the LTD denial, including getting letters from my doctors and from friends and family, as well as hiring a vocational expert to study my case and write a report explaining why I can’t work.  This all sounds wonderfully proactive, but there’s one part that makes me very nervous: the lawyer isn’t confident enough in my case to take it on a contingency basis.  Damn!

So basically the system is designed to screw us.  I got insurance and paid my premiums, and the company denied my claim to save themselves money.  In order to get them to pay what they rightfully owe me, I have to spend a lot of time and energy and effort and money (none of which I have any extra of) to hire a lawyer.  If I ever get well (or well enough, at least) I am going to fight this system.  I don’t know how I’ll do it, but I will get it publicized, I’ll get my legislators involved, I’ll do whatever it takes, but this simply can not be allowed to continue!  But first I need to get my own claim approved and focus on my health.

And in case you’re wondering, the appeal will take approximately 6 months and cost me $7000-$10,000, plus expenses.  Expenses are for things like paying for copies of medical records, paying for the vocational expert, etc.  If we lose, I’m out that money.  If we win, the insurance company owes me $30,000 per year and they will pay me what they owe me from the date I became eligible a few months ago.  They will not pay the legal expenses I incur.

Yep, the system sucks.

Oh, and of course this is also at the same time that I am looking into practitioners, tests, and treatments that will not be covered by my health insurance, I feel like crap daily, I am enduring the most stress of my entire life, and my scant energy should be used to research my treatment options and to recover.  Like I said, this system is designed to screw us.

3 Comments | Educating, Expectations, Frustration, Healthcare, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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