The Balancing Act

I just read an interesting article in the Huffington Post entitled "Six Ingredients for a Good Life".  The basic premise is that life is a balancing act.

"The true measure of greatness is our capacity to navigate between our opposites with agility and grace -- to accept ourselves exactly as we are, but never to stop trying to get better."

I love the author's ideas and think that even though I'm chronically ill they still apply to me.  Here is my synopsis:
We need to find balance between three pairs of extremes.  While either end is a good thing too much can lead to problems and a balance between the two ends is the ideal position.

Constantly seek to learn and grow, but accept yourself exactly as you are.
Learning and growing require a willingness to look honestly and unsparingly at our shortcomings. Start with your own greatest strength. When you overuse it, it's almost surely a window into your own greatest weakness.  By being aware of my inclination to overuse a strength -- by recognizing my own vulnerability -- I was [sic] able to make a different choice.

Add Value to Others and Take Care of Yourself
Gratifying our most immediate needs and desires provides bursts of pleasure, but they're usually short-lived. We derive the most enduring sense of meaning and satisfaction in our lives when we serve something larger than ourselves. Giving to others generates an extraordinary source of energy.

Focus Intensely and Renew Regularly
Unlike machines, however, human beings aren't meant to operate at the highest intensity for very long. Instead, we're designed to pulse between spending and renewing energy approximately every 90 minutes.
It's not the hours you work that determine the value you generate, but rather the energy you bring to whatever hours you work. The more skillfully you renew, the more energy you'll have.

The first one I learned as in my yoga class years ago.  It is a Buddhist idea.  You always strive for perfection but know that everything is perfect the way it is now.

The second one we, as chronic chicks, have to be careful with.  We are often at the extreme end of giving to others.  We need to pull to the other end and take care of ourselves so that we can get better.  I have found writing this blog, writing Fast Foodie and reading/commenting on other blogs is my way of giving back to the community in a way that doesn't deplete my energy stores.

"Selfishness is about making your own gratification paramount. Self-care is about making sure you're addressing your own most basic needs, so you're freed and fueled to also add value to others."

I particularly like the last one.  I think I'm going to try an experiment where I set up a timer and go lie down and close my eyes every hour and a half no matter what I'm doing.  If the body naturally resonates on this schedule this could be a great help to recovery.  I know that prior to getting ill I was a pusher.  I would work for hours without a single break.  I would sit down at my workstation in the morning and then be surprised that it was time to eat lunch.  Where had the last four hours gone?  For me, pacing is the hard lesson of the chronic life.

Just Ask

Remember that old adage "it never hurts to ask"?   Well, it works.  If you don't ask, people can't help you.

I got the idea late last night to contact my friend that is high up in HR and tell her my plight and what I needed.  This is based on a tactic I learned in a "Dealing with Difficult People" seminar that I attended years ago.  If you very clearly lay out what you need and why, more often than not you will get what you want or close to it.

So, at about 1am in the morning, I composed an email to my HR friend.  I told her that I had been denied LTD.  I told her that I was appealing the denial.  I told her that I was the sole provider of health insurance for my whole family (husband and son).   I told her that I had doctor appointments pending.  And then I asked her the following questions:

1. What is my status at work?  (employed/not employed)
2. What is the status of my health insurance? (exact date of cancellation)
3. Can my sick leave be extended to include the period of time of the LTD appeal?

I got a very nice response today.  After six months if an employee is still unable to work then they are terminated.  Sick leave can not be extended during the appeal process.  However, they can tinker with my termination date so that I have health coverage during December which will give me enough time to arrange for insurance to start on January 1st.  This means I won't have a lapse in coverage!  Yay!  I thought this was a great compromise.  And, as a bonus they are going to help me with the appeal process!  How cool is that!?!

I knew I stayed at that company for a reason.  The benefits are fantastic!  And the people in HR are great to work with.

Good News: Bad News

I just called work and not only do I have no sick pay, I also have no job and no insurance of any kind.  The good news is that it is all reinstated once I win the appeal with the LTD company.  The bad news is that I carried the insurance for the whole family for health, dental and vision as well as life for myself.  So not only do I have no income source at all I also have no way to go to the doctor unless I pay out of pocket.  The good news is that I live in MA which is the first state to mandate health insurance.  Since hubby made so little money this year due to the bad economy we might qualify for the state subsidised health insurance.  The bad news is that it won't kick in until Jan 1 and I need tests and appointments done pronto for the appeal for LTD.  Good news is that I have found a lawyer that does insurance cases for individuals (there are tons of law firms that do them for businesses but few that work for the individual).

So in summary:

• Waiting for the lawyer to call back
• Waiting for the rejection letter from LTD
• Waiting for the info packet from LTD company so I can start a battle plan
• Need to file for insurance through the state but need pay info from hubby first
• Need to cancel all unnecessary doc appointments for the rest of the month
• Need to return CPAP machine (no big loss there: I detest that thing)

I'm trying to see the good in all of this.  I'm trying to tell myself that things will be okay.  But I am getting stressed out.  I want to cry and I'm getting overwhelmed and fatigued and can feel a crash starting.  Things are just crap right now.

LTD

or My Very Bad Day

It started out well enough. My cold is getting better but my cough has been keeping me up. That coupled with the decongestant gets me wired so I was up until 4am again. Then the neighbor's dog started barking outside my bedroom window at 8:30am. When I haven't slept well for days I start to have trouble falling asleep at all and once woken up I can't go back to sleep again. Thanks to the dog and much to the shock of my family I got up before 11am and had breakfast with my husband.

Since I felt better than I had in days I did a load of dishes and cleaned up the kitchen a bit. I knew at the time that it was probably a bad idea to be using up my precious energy stores cleaning the kitchen but I was tired of it being so horribly messy.

When I was done with that I got dressed, loaded my Mum in the car and drove off to the yarn shop. I knew which side street I could park on so I could walk a very short distance to the shop.  I also knew there would be seats in the store so I would be ok.  Once there, I sat and looked at pattern books while Mum ogled the yarns. Mum is the knitter. I never did master the art of even a simple scarf. I pull the stitches so tight I can't jam the needles through anymore. Anyway, Mum found some wonderful pink yarn to make me some bunny slippers for my Christmas present. She also found the needles she needed and even picked up a pattern for a sweater that I would like for my birthday.

Then we were off to the library. I got a great parking spot right in front of the door and I headed right into the new book area where there are chairs to sit in. I pulled a few books off the shelves to peruse while Mum picked up some more books to read over the weekend. She is one of the fastest readers I know on the planet. It isn't unusual for her to finish a whole book in one day. A week later I'm only half way through my first library book and I've got two more to go.  I was so happy to be out of the house for a change and it felt so weird to be driving my car.  I couldn't believe how well I felt although I still had the remnants of the cold hanging on.  I was in a great mood.

I swing round the bank on the way home to pick up some cash while I was still mobile. My kid tends to suck all the money out of my wallet. At least it takes me a month to go through the pocket money I used to burn through in a week and a half when I worked. It is much cheaper staying home in some regards.

We finally got back to the house and I was pooped. I knew I needed to sit down but I also wanted to get some food into the crock pot first. I'm sick of take out food and wanted some real food to eat for a change. I found a simple chicken in applesauce recipe and started filling the pot with ingredients. I was just adding the applesauce when the phone rang. It was the insurance company: my claim had been denied for "insufficient medical data to support inability to work". I kept it together and asked about the appeals process, the amount of time I had to make the appeal and how long it would take them to reassess it after submission. I hung up the phone and burst into tears. Mum came over to hug me. Holy crap what am I going to do? I have NO income this month and Christmas is three weeks away. Am I going to loose my house? Will hubby get his wish and we'll end up in a trailer in the NM dessert? WTF?!?  How did this happen?  What the hell went wrong?  My doc had assured me that the insurance wouldn't be a problem.  I had tons of tests and I knew that the insurance company had gotten all of the results.  What the hell?

I pulled myself together enough to finish slapping dinner together and collapsed in a kitchen chair. Now what? Call hubby and ruin his day too? I wanted his shoulder to cry on. I tried talking with Mum but I kept tearing up. I couldn't get any words out. This anger, this frustration, I needed a way to funnel it into something constructive so I hit up the internet. Thank goodness I had the presence of mind to attach CFS links to this blog. I looked up the legal advocacy group and sent them an email I looked up the disability and insurance information on the MA CFIDS site. I got the number for MA Disability Lawyers Association.

I found out that under ERISA I could request the documents they used to asses my claim, the documents they rejected for the assessment and the clinical criterion they used to make the decision.  I was back on the phone with them within a half hour of the initial phone call.  They were now going to send me the complete document packet along with the letter of denial.

A wonderful lady from the advocacy group emailed me back within an hour with some great information. She told me that the insurance company is looking for test data to support my claim. My word and the doctor's word aren't good enough. I need test data. This makes sense. So now my engineering brain kicks in; what tests do I need to prove I'm not functional? Again back to my blog page to get the link for Dr. Komaroff's lecture. I knew he had lists of tests to show CFS along with papers to support his claims. I also came up with a few extra tests that could show cognitive impairment and joint degeneration. I was on a roll. I emailed my doctor and explained to him about the denial and my idea about getting more tests lined up. I also attached the link to Komaroff's talk   A battle plan was forming in my head. Talk with the primary, review the letter of denial, figure out what tests we need to supply and file the appeal. Suddenly I didn't feel helpless and lost. I was still upset but I had a plan.  I was lining my weapons up prior to going into battle.

Now that I was calmer, I called work and left a message; I needed to find out if I was going to loose my health insurance and what would happen during the appeal process. I have money to cover the bills during that period but it would be a disaster if I lost the insurance.  I knew I wouldn't hear from them until Monday.  It was too close to quitting time on a Friday afternoon for them to call me back.


I did some more research and then cleaned up my desk and the desk drawers. I spent the next two hours sorting papers.  I didn't want to stop doing stuff. I was exhausted. Words were starting to jump around the page and I was having to read things several times over for them to make sense but I didn't want to stop. If I stopped I would have started crying.

Hubby came home. I broke the news to him and then told him of my plan. We discussed it for a while and I could tell he was having trouble digesting all of the information I was throwing at him. I was starting to slur my words.

He made the sides for our dinner and we sat and ate in silence. I was beyond tired. I was freezing cold and coughing up a storm. My throat had that weird too tired CFS ache. After dinner I went back to the internet and sent off some more emails, including a Christmas is canceled one to my sister. I had already gotten out of doing presents with my brother. I decided that until the LTD settlement was resolved that we had to stop spending money. no more eating out, no more clothes, no presents, no books. It would have to be a financial clamp down for the next two to three months. I don't want us burning through our savings faster than we have to.

Hubby and I sat and talked a bit more and I was now mangling sentences. I couldn't get words out. I would use the wrong words. English just escaped me. He knew I was burned out and needed to be left alone for a while so he went off to kill some zombies.

I decided to look through the list of funny links on my blog. I needed to laugh. After some great pictures at My Food Looks Funny and some good stories on Dr Grumpy I felt a bit better. Mum had come over to find out why I was laughing and joined me looking at cute animal pictures. We then watched our favorite BBC show Doc Martin, which turned out to be a great episode.  Everyone headed off to bed except me.  I'm feeling just shy of normal again. I'm scared that if I stop typing and go to bed I'll start crying and worrying so I'm up too late again. When I finally get to sleep tonight I'm betting I have a huge crash in store for me tomorrow.  Bummer.  I was just starting to feel better.

Squee

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The Cold: Day 5

or Better Life Through Chemistry

I could kiss my doc.  I'm doing so much better today.  The cold seems to have run its course and the drugs are doing wonderful things like letting me breath and stand up without the room spinning.  While my hearing is still a bit dull, I can now pop both ears and I no longer have the stabbing pain everytime I move my head.  The congestion in my chest is loosening up and thining out and starting to run clear so the antibiotics are kicking some major bacterial butt.  Take That!!  It is wonderful when you can eat food and breath at the same time. 

I now have the mother of all cold sores setting up shop on my upper lip.  Holy cow this thing is huge!  I have never had one this big even when I contracted the original virus over twenty years ago.  I had been so happy that each time the virus had a party on my upper lip that it was smaller than the previous one and that it took longer and longer between parties.  I thought I had vanquished its ugly butt.  I guess I was wrong; it just needed a little backup from good old XMRV.  Now they are doing the tango together on my upper lip and having a grand old time.  It is gross and ugly and makes me look as diseased as I feel.  Hah, visible evidence of the viral war raging inside my body.  At last some proof that I am indeed sick.  Some outward ugliness.  A horrible battle wound.  Hopefully I won't have a horrible battle scar when they finally poop themselves out.

The Cold: Day 4

I am truly shocked at how fast and how thoroughly this cold has wrecked my body.  Day one was a simple sore throat that quickly progressed to a full on runny forgot to turn the taps off nose.  One box of tissues and one day later it was in my right ear causing all sorts of pain and swishing noises along with lots of vertigo.  I couldn't move my head in any direction without shooting pains and the room swimming around as if I had just stepped off a Tilt-a-whirl.  The nose continued to run unabated but the mucus had disturbingly thickened up occasionally producing the green goo indicative of a sinus infection.  Luckily I had no sinus pain to speak of just one hell of a cough.  I did however start spiking mild fevers.  The worst one was in the middle of the night when I got so cold my teeth started chattering.  At 4am I wasn't about to go hunting for the thermometer for confirmation so I just piled on the blankets and went back to sleep.  Day three the coughing fits were so bad I was turning bright red because I couldn't breath.  Hubby was worried I was going to pass out or have an aneurysm.  No more fooling around I hit up the stash of left over prescription cough medicine.  This helped a lot but I was still having the occasional coughing fit.  I could feel the congestion in my lungs.  I have a history of colds turning into bronchial infections so I knew where this was heading.   I also started swinging between being hot and cold with the occasional sweats thrown in just to make this interesting.  Although the pain in my ear had subsided, I could no longer hear well on the right side.  I probably had an ear infection as well.  I spent most of the day sleeping.  When I woke up this morning I was coughing up green goo balls .  When I called the doctors office, the receptionist informed me that 'green goo balls' isn't a medical term but I needed to come in to see the doctor.  So now, four days into what should be a routine cold I had a chest infection that was probably bronchitis and an inner ear infection.  I went home with orders to take a decongestant, an expectorant, an antibiotic, and prescription cough medicine.  Of course this is in addition to my B12, C, D, Zinc and prescription anti-inflamatory meds.  And I hate taking pills.  Ugh.

Oh and by the way, one hour before I went to the doctor a cold sore showed up on my lip and grew exponentially.  By the time I got to the doctors office, it was a quarter of an inch in diameter and already had a pussy head on it.  OMG, I haven't had one of these suckers in over ten years.  I also get a 24 hour warning before one pops up and it takes days to get this big.  WTF??  I had to get cold sore medicine along with all the other pills at the pharmacy on the way home.

At least I'm on meds now and can maybe at least slow this thing down and maybe avoid pneumonia.  I am truly flabbergasted how fast and how extensively this has spread.  I am also surprised that I didn't get a sinus infection along with all the other infections.  Hopefully tomorrow I will see some improvement.