Tag Archive: chronic illness


Rabbit holeHelp! I have fallen down the rabbit hole. My husband is self-employed and has insurance through the Health Insurance Marketplace.  We actually enrolled him during the initial roll out. There were no problems.  Signing up was quick and painless.  This year I received a letter, in my name, that we needed to resubmit his application through the government Marketplace. We wanted to carry the same policy.  Yikes! The only time I have ever encountered customer service this poor was dealing with disability insurance companies when filing a claim. Those of you following my blog know what that was like.

First I tried to renew through the website at 8:00 a.m. Everything went fine till the financial portion.  Because my husband is self-employed as a sole proprietor, he does not get a monthly paycheck.  The first question was asking the monthly income.  We base our income on the profit for the year before so I divided it int0 12 months. The same way I did it the year before. After completing this it said I had to send in a W2, pay stub, business ledger, or 2014 tax return. He is self-employed so he doesn’t get a W2 or a pay stub! I ought to copy our business ledger and send it to them, but I don’t want to kill that many trees or pay that much postage.  Obviously we don’t have a 2014 tax return. I gave up and decided to call the number provided.

It was now 8:45 a.m.  After a 10 minute hold time a very courteous young lady answered the call. She took all my information then told me she couldn’t discuss my husband’s insurance with me.   I reminded her that I received a letter to me for my husband’s insurance.  She absolutely would not, could not speak with me without my husband with me.  Thank you very much for the help. It was now 9:15 a.m.

Now for the biggest fiasco yet! At 9:30 I decided to try to call one more time and get another representative a try.  This time there was a 15 minute wait time. The call was answered by a young man that confidently responded that he could certainly help me with the task.  Everything went well till we got into the financial portion.  Once again he asked for the monshooting-starthly income and I explained the self-employment issue.  I stated our income hadn’t changed.  Finally after 2 hours going back and forth, we get his insurance set up for $325 a month.  But I still have to send in nonexistent paper work! Plus there is another number I have to call to get it started.  Wonder how long that will take? It  was now 11:35 a.m.

But it gets even better.  The same day I received a letter in the mail from my insurance company stating that if we didn’t renew it would automatically renew for $183 a month! If you saw a shooting star that night it was just the top of my head exploding!

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Trying New Things

Painting, gardening and crafts

As I continue to define my role in life as a disabled retiree, I have tried several alternative directions. I have tried tutoring, sewing, painting, care-giving, volunteering, and gardening. Oh yeah, I blog. There just hasn’t been anything that cranks my tractor yet. I know I have a hidden talent that is just waiting to be found.

Tutoring went well and I enjoyed it.  The point of tutoring is to get the student to the point that they don’t need to be tutored.  At first, I got several calls a week requesting tutoring. I had 4 or 5 regular students for 3 or 4 sessions.  Each student became confident enough to end the sessions.  The school hired another math teacher and I quit getting calls.  Guess I was too good for my own good! I even tutored a few adults that wanted to learn different technology. While I enjoyed that, adult students taking private lessons can be truly demanding and required too much babying.

I thought I knew how to sew.  I made pillows and seat cushions.  I even taught a friend to sew.  We made at least 5 summer dresses and tops.  She wears the dresses all summer and they look great on her.  They just look like sacks on me!  I tried to make my great-nieces clothes.  I only saw them wear them a few times.  I suspect their mother made the girls wear them then.  I left wads of elastic in the waistband because I couldn’t get it back around to cut it off.  The seams were too large making the legs tight.  Honestly, I wouldn’t wear them and I won’t even display them here!  And my bloody fingertips became too sore.

 

crafts displayed on a table

Countless hours and burnt fingertips produced an array of crafts to sale.

My latest effort was crafts.  A local church was having a bazaar and you could rent a booth for $20.  Great. I was excited. A friend of mine decided she would do it with me. We spent a week gluing, painting, and tying.  We collected craft ideas and were diligently preparing to sell our first million, or a 100 at least.  I found it very painful. Hot glue and hands that shake or drop things should not be in the same room together. I think I lost the fingerprints on at least two of my fingers. The big day came and we went to find our booth.  It was at the very end of the booths, behind the musical equipment for the band that was playing.  And it was farther from the door than any other.  I think we sold $120 but spent $60 on materials and paid a $20 booth rental.  We cleared about $30 each and I got rid of those pesky fingerprints!

So far I haven’t found my next calling, but I am certainly going to keep looking. The desire for individuality and purpose is uniquely human. As long as my fingers hold out, I am going to keep searching for what I want to do with my life when I grow up!

Wet cat

Ordinarily I do not write about my family, but the past two years have been a wild ride for our family.  Life has been a tiger that we just had to hold tight for the ride.  Our youngest was in Afghanistan, and our oldest was out of work.  I am disabled and receiving Social Security Disability but still, after nearly three years, considered able to work by my disability insurance company.  We have been building a new house and trying to sell our home of 20 years.  My husband wants to retire but the tiger came in and made that impossible for now.

I have not posted while my son was in Afghanistan as my sacrifice to honor his service.  A Mechanical Engineer with a wife he served for one year, and completed his Master Degree while away.  He is in the National Guard serving when there is only moderate personal gain and much sacrifice.  His poor wife had to maintain the house, the yard, the finances, two vehicles, and take time for her own career while he was gone! All these men and women that serve in the Armed Forces have my gratitude and respect.  They leave their homes, their jobs, their wives and children to fight wars and protect us during those times when we are most vulnerable.

The economy has definitely been felt in our household.  My oldest was out of work.  He went through 12 years of high school, passed all the grades, but could not pass the required exit exam. He has a learning disability which makes passing standardized testing very difficult for him. He tried for 10 years and finally got a GED this year!! He has been hired on a temporary job but definitely a step forward.  I am so proud of them both. They aren’t shy about hard work and rode the tiger down!
Happy-cat
I live with active sarcoidosis and severe bilateral Meniere’s Disease. I do not drive to protect the safety of the other drivers on the rode, so it has been a blessing to have an offspring available.  It has been liberating to have a driver available whenever I needed or wanted.  And I didn’t feel guilty since he was eating my food!  Now that he has gone to work I am once again confined to socializing and shopping through technology. (You can spend a lot of time shopping and money on the internet!)  Most of the time lately I am in too much pain and fatigue to do anything.  With little time to accomplish anything, it is hard to get anything done!  Unfortunately, recent bouts with pneumonia and bronchitis have set me back. I am back on track now and hope to be back up to mischief.

There is always hope in everything. That is what makes us keep riding … the hope of a future!

 

More to come about this year!

Surprised?

Well, Cigna canceled my disability insurance payments.  Surprise!  I am initiating an appeal. My doctors have not changed their positions. Cigna Life Insurance coverage is no longer in force, as they have canceled the premium waiver.  On top of all this, my COBRA health insurance coverage expires the first of September, but I can’t get Medicare until November. I am about at the end of hope.

I expected my disability payments to be canceled.  That is how the insurance game is played. But they canceled it because the strength in my legs had increased. I never knew that leg strength helped to type or hear! Once again my ENT and rheumatologist had to fill out forms and send in letters. They make it so difficult to get and keep payments coming.  The reason I signed up for disability insurance was to make sure that I would have enough income to pay my bills.  These payments are less than I draw from Social Security, but they are needed to cover the bills for insurance.

Image

I cannot get life insurance coverage outside what I used to have.I received a letter from Cigna stating that they had also canceled the premium waiver for my life insurance.  The letter said I had the right to appeal the decision, but I had to apply for conversion to a private policy within 30 days.  AND I had to send in the first three months payment with my application which would run about $1400.00!  I am fortunate to have some room with my finances but that and my health insurance run more than I draw from Social Security. Our home is on the market and we are building a smaller, handicap accessible home to lower our expenses.

You have to be on Social Security for two years to be eligible for Medicare.  COBRA coverage last 18 months and cost me about $900 a month.  That means that for 6 months I will not have health coverage.  I cannot possibly afford insurance that will cover my pre-existing condition (about $1300).  Believe me I have checked. I went through the procedure to try to get COBRA extended but they denied it because they weren’t notified within 60 days of receiving SSD.  That also has an appeals process.

The Sarcoidosis is in the joints of my fingers and my wrists.  I cannot type for more than 30 minutes without pain. I lose my grip at all the wrong times.  I can’t sit comfortably due to pain in my hips. I can’t walk without pain in my knees or feet.  I can’t stand still without falling because of the Meniere’s. I can’t walk without looking at my feet.  I can’t drive more than 10 miles from home.  Yet Cigna thinks I am faking and can work a full-time sedentary job.

I don’t have the energy on a good day to be active for more than 4 or 5 hours.  Someone is with me whenever I leave home in case I fall.  The medication I take is messing with my body and the disease markers keep going up.  The doctors tell me to avoid stress.  The insurance companies count on people either giving up or dying.  And the way this is going I think they are literally killing me!

 

 

Here We Go Again

doctorMy private disability insurance policy from my former employer finally approved my long term disability payments.  The Social Security Administration, SSA, approved my disability coverage six months ago and ruled “disabled without hope for improvement.”  This means that SSA will not need to reevaluate my disability for five to seven years. After receiving one monthly payment from the private insurance, I received a call from their representative that I will need to be reevaluated due to criteria changes.  It is a wonder that I didn’t have a stroke right then.  I know my blood pressure must have been elevated because smoke was coming out my ears.

I don’t understand insurance companies.  Disability insurance is gambling, period.  The insurance companies are betting that you will not be disabled before reaching retirement at 65.  You are betting that you will be disabled.  In my case, I won the wager, but I have to prove that I won.  Unlike bookies that pay out winnings, insurance companies do not simply pay out winnings.  You must prove you won and guess who decides whether you proved it.  That’s right.  It’s the insurance company.  Even the law is on the side of insurance.

The Employee Retirement Income Security Act, ERISA, was passed by the U.S. Congress in 1974 and applies to most insurance obtained as an employee benefit. According to the website of Pillsbury & Levinson, LLP, ERISA is one of the worst and most poorly understood laws ever passed by Congress. ERISA gives insurance companies enormous advantages that may actually encourage them to deny claims unfairly.  It would appear there are no penalties for the insurance companies that deny benefits.  After 2 years, I am finally approved but must be re-evaluated because they changed their criteria.  The insurance companies can decide to change the requirements for disability at any time without notice to you.

US SenateUnder ERISA, a policyholder may NOT sue an insurance company for any damages caused by the wrongful denial of benefits no matter how egregious, outrageous, or malicious is the conduct of the insurance company.  Under ERISA there cannot be a jury trial, the policyholder must sue in federal court and there is no pretrial discovery.  If you sue the insurance company, under ERISA it must be filed in federal court and heard by a federal judge.  I had to go through this process in order to received short term disability from the same company that is providing long term benefits.  You do not get damages for the time without an income or the cost of filing the law suit.

ERISA covers retirement, health and other welfare benefit plans (e.g., life, disability and apprenticeship plans). Among other things, ERISA provides that those individuals who manage plans must meet certain standards of conduct,  detailed provisions for reporting to the government and disclosure to participants, assuring that plan funds are protected and that participants who qualify receive their benefits. As pointed out above, this law actually encourages abuse by insurance companies instead of assuring that qualified individuals receive benefits.

ERISA has also been expanded to include new health laws. The Affordable Care Act addressed pre-existing conditions, coverage of adult children, and other protections to ensure affordable health coverage for all.  The Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) amended ERISA to provide for the continuation of health care coverage for employees and their beneficiaries (for a limited period of time) if certain events would otherwise result in a reduction in benefits.  The Health Insurance Portability and Accountability Act of 1996 (HIPAA) amended ERISA to make health care coverage more portable and secure for employees.

Wet cat

My benefits were reduced by the amount of my Social Security Act Disability funds so the amount to be paid by the insurance company is rather small.  They are supposed to pay for about eight years.  It appears that the eight years will consist of constant harassment, evaluations, and forms.  My employer paid for this benefit, but I wonder if the harassment will be worth it.

The really bad thing is that there isn’t a thing I can do about it. We are always told these laws are to protect us, but who do they actually protect!

Goodbye, Mustang Sally

Old picture of boys leaning against cars.

I grew up in the 60s and early 70s.  Mustangs were THE hot car.  The boys would park their Mustangs, and other muscle cars outside the gym.  They would lean up against their cars in their bell bottoms that fit comfortably  tight, no need to buy boxers for show.

Looking back I am sure some of these boys were just skinny pimply faced kids, but they sure did look hot to us girls when they leaned up against those muscle cars.

When I turned 50, I guess I had a midlife crisis, but I absolutely had to have one of the new retro style Mustangs.  I specifically wanted the pony package in gray with a black convertible roof.  In 2009, I found her.

Mustang Sally

She was on a car lot covered with leaves.  I knew I had to have her.  She went home with me that very day.

On bleak cold or rainy days, she rode me to work safe and secure.  When the sun was out and the day was warm, she would put her top down and ride with the wind.  On those days, I felt young and free riding with my friend.  I would get challenges at red lights and would race her engine just a little to have some fun.  (Never enough to break the law.  Never. Honest.)  Going into drive through service windows were a hoot!

Then my doctor said those words, “You need to use extreme caution driving.”  I began to have vertigo spells where someone would have to come get me.  More words followed that changed my life, “You need to stop driving.”

“Mustang Sally, think you better slow your mustang down.
Mustang Sally, think you better slow your mustang down.
You been running all over the town now.
Oh! I guess I’ll have to put your flat feet on the ground.


All you want to do is ride around Sally, ride, Sally, ride.
All you want to do is ride around Sally, ride, Sally, ride.
All you want to do is ride around Sally, ride, Sally, ride.”
~Wilson Pickett

Now my old friend, Sally, is going to a teenage girl who will treasure her as she deserves to be treasured. Maybe they will make their own teenage memories.  Memories that she may look back on 40 years later and smile.  Hopefully, they will be memories she can cherish and remember with laughter.  A classic ride driven by a classy young girl.

Take care of Mustang Sally for me, Christina!

Brain Fog

out of orderIt has been over a year since I have went shopping on my own. It has been over a year since I drove myself to the doctor. It has been nearly a year since I went by myself to visit a friend. It has been almost a year since I have done anything unplanned. It has been over a year since I had to think!

Everything seems slowed down, almost like swimming in hard set jelly. I hear people tell me things and react as one should react. Later though I can’t remember them telling me and I have to ask again. I never remember people’s names, but then I never did in the past either. I have a degree in math, taught high school math, and did graduate work in computer science, but I find myself stumped when trying to figure out the difference between two prices. I used to always be elected to keep score during game night. Now I am accused of cheating because I add wrong!

I truly do not believe it is due to any physical calamity, although God has given me a few. I think this “brain fog” is just laziness. I have set and hibernated for the past year.  Am I better physically? Maybe in some ways.  Mentally?  Definitely not. Because of my physical limitations, I have allowed my brain to atrophy. I have not been challenged with true problem solving. I let my physical dependencies morph into emotional dependencies. My brain became a couch potato.

So I need to get off my rear and motivate. I am not sure how to go about it. I know exercise is in order in some format. Balance and fatiguing the muscles are issues. I need to find some way to volunteer for something even though I can’t get anywhere or predict if I will even be able to volunteer on any given day. Crossword puzzles and smartphone games are gwoman holding shopping bagsreat, but lack that charge you get from social interaction.

Recently I did go on a shopping trip with two other friends. I was out of the loop when they began talking jobs, shopping, or anything outside our little group. I quickly tired and began walking slower. How do people do this?

How do you become a healthy shut-in? I do not live near a metropolitan area. My husband would not move to the city. There is no public transportation. My husband works long hours and has to rearrange employees to take me places. I want to get healthier and continue to grow stronger. I want to grow sharper mentally and to continue to live independently. Any suggestions?

I take methotrexate injections. My regular pharmacy is a large chain drug store and do not carry this drug. They said that it was no longer being manufactured. A small locally owned pharmacy had the drug and has been able to get more for me when needed. My insurance, however, will not pay for the drug because I am injected it on my own. If I went to a doctor’s office and they gave me the injection, the insurance would pay. This has caused me to wonder who is responsible and why this situation has developed. One can only decide that the insurance and pharmaceutical companies are primarily responsible, but politicians have allowed these companies to have total control.

Medication and syring

According to The American Society of Health-System Pharmacies these shortages were caused when manufacturers ceased production of the drug. APP Pharmaceuticals application to manufacture methotrexate has sat dormant since 2010. The New York Times reported there is a backlog of applications for new generic drugs at the F.D.A. because the government does not have the money to hire enough reviewers to analyze the applications or inspectors to visit the facilities. The generic drug industry proposed providing the agency with $299 million in annual fees to finance the review process as they grew tired of waiting for Congress to fully finance the F.D.A.’s generic drug office. Looking at the Food and Drug Administration’s website it would appear that current drug shortages are primarily generic drugs. The reasons listed are consistently either high demand or manufacturing delays. Could the true reason be greed? There is obviously more money in the brand name drugs than generic.

I have health insurance coverage with a major national insurer. This insurance will not cover my methotrexate unless I go to the doctor’s office and they give the injection. If I give myself the shot it works out to about two dollars a shot. If I went to the doctor’s office, it would cost much more. According to the online Health Affairs Journal physicians purchase products from wholesalers or directly from manufacturers, administer them to patients, and then charge insurers at prices much higher than those they paid. This practice undermines any insurer effort to extract volume price discounts from manufacturers. When accompanied by large price mark-ups, this gives financial incentives to physicians to prefer high-price, office-administered drugs over products that can be obtained through independent pharmacies. So I wonder who benefits from non-coverage of self-administered drugs.

So who is in charge of our health care and the drugs we need to stay healthy or even to live? Amy Klobuchar, US Senator has said that “over the past five years the number of life-saving drugs in shortage has increased dramatically – from 55 to 231 reported drug shortages in 2011. A female doctor This is a crisis that has grown to such proportions that current drug shortages have impacted individuals all across the country, forcing some patients to delay their lifesaving treatments or use unproven, less effective alternatives. In some cases, drug shortages have even resulted in patient deaths. This is a national public health crisis that must be addressed.” However, any government intervention in health care is met when fierce opposition. Why? We have had price controls and subsidies for milk, corn and soy beans. According to The Daily Caller, under current law, milk processors must pay a federally mandated minimum price for unprocessed milk. Where is the outrage over this government intrusion?

Our health is too important for government not to intervene. Of all the crisis we are facing as a country, insurance and pharmaceutical reform must be a top priority. If the health of our citizens fail, who will fight our wars? Who will lead our nation? Who will be able to work at a full-time job? Is the fox watching the hen house? Our representatives and senators seem to be listening to the insurance and pharmaceutical industry lobbyist more than they hear the private citizens. We are losing our voice as citizens. Voters have less influence than they do. It seems we need to speak louder.

Riding the Tiger

Life is like riding a tiger.  It will try to throw you, scar you, bite you and chew you up.  We have been with out my income for 8 months now.  I haven’t driven at all in months and spend most of my time sick.   My husband recently reminded me that we have been thrust into drastic changes before.

In 1994, we sold a rental property and my husband’s business property to the state for a highway.  The state paid residential prices for highway frontage.  My husband could not rebuild with the price they paid.  He was without a job. A male Sumatran tiger  I had just finished college and did not have a job.  Then a real-estate agent knocked on our door.  He had a couple that were interested in our home that wasn’t on the market.  Next thing we know we had sold our home and had no place to live.

I found a teaching position and went to work. My husband took a much needed vacation, raised our two sons who were teenagers, cooked, cleaned and fished a lot.  We built a new house with a pool.

Two years later I lost my job.  I found another, better position with much better pay.  My husband was able to rebuild his store. We not only came out on top but better for it.

We call this “riding the tiger.”  If you can image yourself sitting on a tiger, it becomes clear.  The only thing you could do if you found yourself on a tiger is hold on for dear life.  Unexpected things happen.  Just as being on top of a tiger is unimaginable, so can some of our experiences in life.

The tiger will not allow us to have any control.  I am a control freak and this is probably the hardest thing for me.  The more you struggle to get back in control, the more it bucks and twists.  By struggling for control, you allow the tiger more control.  If you hold on and relax the tiger will slow down eventually.

If you try to give up and jump off, the tiger will attack.  Once you are on the ground, it mauls and tears you apart.  Life can get to the point where you want to give up, but where does that get you?  If you give up and lose hope, you can’t survive till a better day.   Life can be painful and leaves scars.

I have to keep reminding myself that it isn’t the tiger that determines how the ride will end.   Each of us determine our own outcome.  We control our attitudes and actions during crisis.  When things get tough, we have to climb on and “ride the tiger.”

I trust in God that he will see me through, but we don’t know God’s will for us.   The tiger may be part of the plan.  Sometimes, we just need to ride the tiger.

Disability Dizzy

I bit the bullet and filed disability.  Boy, it is either the biggest mistake I have ever made or the best decision I ever made.  (Although actually I had no choice in the matter.)  The doctor had talked with me about disability.  Being the sensible and “level-headed” person I am, I said no I was better and could handle it.  As my husband would say, “I’m tough.” Well I tried for two months after the profusion to go to work and lead a normal life. At first it did seem somewhat better.  Soon the constant ringing in my ears made me put in earphones just to try to dampen sound.  I kept crackers and a coke beside me in my car if I became sick.  When I got home from work, I was exhausted and drained.

I elected to take short-term disability insurance.  The last company I worked for had disability sick leave. It was much easier to use and I often used it when I needed to rest and recover.  I assumed this worked the same way. I called the doctor who said that basically all that could be medically done had been done and I needed to file for disability. I made an appointment with the doctor but couldn’t get in for three weeks since it was not an emergency.  I filed the Family Medical Leave Act, which was approved with no problem.  The doctor signed and wrote a statement on both the FMLA forms and insurance forms the day after I filed.

The insurance claim manager had a problem with it as soon as she got it because she said I did not see the doctor the first day I stayed out of work. I had been sick two weekends in a row with nausea and ear aches.  Not to mention feeling like everything is leaning and moving.  When I could not go to work the second Monday I knew the time had come to file.  I didn’t go to the doctor because it wasn’t necessary.  We all knew it was the Meniere’s.

They requested the latest doctor’s notes and it was the week I was “level-headed”.  The notes say I had improved with only occasional dizziness.  Never again will I try to put on a good front!!  From now on I will tell it like it is.

Anyway, the insurance company turned me down. Said there was no proof I was sick on my last day of work.  Now the doctor will not release me to go back to work and the company I work for will not let me go back to work without it. Pardon me, but basically I am screwed.

Now there is an appeal process and of course, I had to get a lawyer.  Meanwhile I have to pay my bills. Thankfully, I had saved enough money for a few months.  Politicians like to say private insurance is better than social security.  I bet they don’t have the same company I have!