Tag Archive: sarcoidosis

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!
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!



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.


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!

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!

And It Just Gets Better

My cat at work

At least my cat helps out!

This week I had my regular check with the Ear Nose and Throat doctor for my Meniere’s which is secondary to the Sarcoidosis. In other words, it is a gift from my good friend Sarcoids. I though it was under control and expected some positive news from this visit so I went in with a big smile on my face. Leaving I felt like crying.

The first thing I had to do was a hearing check. This was expected as they generally do this once a year. Meniere’s can cause hearing loss if it isn’t controlled. This time I had to do some testing that I don’t usually have. Still I wasn’t alarmed.

Then the doctor came in and sat down. If a doctor ever sits down, you can bet you aren’t going to hear anything good. I have lost all the lower range of hearing in my left ear. The Meniere’s is now full blown in the left ear.

He has doubled my medication and if that doesn’t work, he wants to do the steroid infusions into the left inner ear. While this isn’t a horrible procedure, it does involve making a tiny hole in the eardrum. Not something I am eager to do.

On top of this, I realized I had not had my lab work in six months. This is normally done every 3 months. The medication I am on can cause damage to the liver, kidneys, heart, and thyroid. The disease can cause a build up of calcium in the blood while sucking it from your bones. It also can cause anemia and an elevation of white blood cells so it is very important to have this blood work on a regular basis.

Guess you could just call me Lucky, like the three-legged, blind dog!

And So It’s Official

The neurologist sent me to yet another doctor. This one is a neurologist-ophthalmologist. I guess when they get a rare disease they feel obligated to spread the opportunity around. After a ten minute consult, he stated that my eyes were fine and he agreed that it was a stroke. His advice, return in 6 weeks. I have an outstanding neurologist and an outstanding ophthalmologist so I did not make a return appointment.

At 55 I felt fear and disappointment after hearing this news. Disappointment that the only thing that could be done was a baby aspirin. No magical fixes. Fear because I know that strokes are signs of Sarcoidosis becoming progressive and possibly terminal.  Disappointment that the plans I made may change now.

have known from the beginning that the sarcoidosis is producing granulomas on my brain stem which causes inflammation. I knew this day would come when the goal would no longer be to get the disease in remission. Now the goal is to control the disease enough to keep me alive. A stroke in the brain stem area of the brain can kill you instantly.

I spent a week pleading, cursing, and bargaining with God. Then I read a secular supernatural thriller written by a christian author that made a point that I really needed to hear. Who are we pleading, cursing or bargaining with God. Even Jesus prayed “Take this cup from me” and “My God, Why have you forsaken me?” That was the son of man side of Jesus. The Son of God said “Not my will but Thine” and “I commend my soul to Thee.” (I am paraphrasing so please forgive me if they do not match your Bible word for word.)

I found a peace in knowing that a power greater than I, a power that I can never understand, is in charge. All I have to do is relax and let Him control my destiny. Whatever His plan, I am in good hands.

You Know You

I recently started having headaches that were becoming more frequent and lasting longer than my usual migraines. One night I was relaxing watching TV, playing solitaire on my laptop, and talking on the phone.  (You know women can’t relax if we aren’t multi-tasking.) I noticed some blurriness so I got off the telephone. Pretty soon, I was just listening to the TV since I could no longer see it.  I became alarmed when I had to shut down the laptop because I could no longer see well enough to tell the numbers or suits of the cards.  About all I could see were colors.

At Kennedy Space Center

I know when I have just done too much and need to relax.

I have had migraines since age 15 and have always had some visual signs before the headache started.  This is very typical of a classic migraine.  These headaches were different.  It wasn’t just having to squint to see or blink to refocus.  I just could not see.  It was as if the my glasses had suddenly become clear fake glasses.   I can’t say that it was double vision because I could not see enough to tell if the image was double.  I could feel my left eye pull and droop.  My husband came in and saw it.  He thought I was just very tired.  I didn’t say anything.  I really was so out of it, I wasn’t thinking.  I fell asleep on the couch at 8:00pm and he sent me to bed.

My eyesight very slowly came back over the next week, but my left eye still seemed to twitch and jump.  It felt like I was only looking out of my right eye. And I was still having more frequent headaches.  I knew this wasn’t normal for me so I called my eye doctor.  After a thorough exam, he said he couldn’t see anything in my eyes to explain it.  No sarcoid granulomas or inflammation.  However, my vision had decreased considerably in the left eye and I wasn’t using it for some reason.  So, he wrote me out a prescription for new lenses which just happened to have to be custom-made.

At my next regularly scheduled neurologist appointment, I explained what I had been experiencing.  I had just had an MRI of the brain last year but another one was required.  Two days before vacation we got the news.  I had another lesion in my brain.  The doctor gently explained that this lesion was close to the brain stem but that no sarcoid inflammation was seen.  With no inflammation apparent, he thinks the probable cause is “small stroke activity.” (His words.)

What does this mean?  I have no idea.  More to come on the neurologist recommendations.  If I had not been aware of what was normal for me with migraines and what was unusual, an MRI would not have been scheduled.  I am certainly seen by numerous doctors, but they can only know what I tell them.  Please, be aware of your body and be sure to tell your doctor of any changes that are not normal for you.

I am not the disease!

I am not sarcoidosis! The disease does not define me.  I am a christian. I have a sense of humor.  I want to be needed and to contribute to society.  Yet, sometimes, I feel like others see only the illness.

Where Was I

As often happens, I have gotten off track once again.  I have been told that I am flighty, scatter-brained, willy-nilly, and other less flattering adjectives.  Maybe I have Attention Deficit Disorder and was never diagnosed.  Who knows and frankly, who cares.  This blog seems to be a perfect example. Life just has so much to offer and I am interested in it all!  Think of all the things that are out there that we will never experience.

I have been feeling much better and have had greatly increased mobility.  I am on medication that is doing a TKO on my immune system, but the test results have leveled at mildly above normal.  I am gradually becoming accustomed to the medication which is great.  I still get over tired easily and the nerves in my legs curse me for days. The biggest disappointment is the lack of normalcy.  I want that back!

How do I know what is just old age and what is this disease. Somewhere, somehow, I have aged and didn’t know it.  I look around at my friends and think, “Goodness they are getting older.”  I looked in the mirror the other day and, God help me, it was a haunted mirror.  There was a middle-aged woman returning my stare and she looked as horrified as I did!  I must have looked really scary.

Thank goodness I am getting older, but wouldn’t it be nice to have the energy of a three-year old when you are over 50.  I would be accomplishing so much.  My house would be cleaner, my car would get serviced more often, and everyone would be happy.  Right!!

No thanks.  I am glad to be getting older and glad to be able to complain.  If you haven’t got anything to complain about, that probably is not a good thing.

Good News Bad News

doctorGood news! My health is finally beginning to stabilize.  The methotraxate appears to be working and I am finally getting adjusted to it.  I go to the doctor next week so we will see what we see.  The bad news is the new insurance and health care cost are now my ailment.

My husband and I have to each meet the first $2500  as a deductible.  Since I had no clue who my employer would be 3 weeks before the contract changed there was no way to prepare for this.  My husband went to the doctor 3 weeks ago and an x-ray showed a mass in his left lung so a CT Scan was ordered.  Good news is that they think it was only pnuemonia.  Bad news is another CT Scan will have to be done to confirm that was indeed the case. More good news is that his deductible will be met.  Bad news we will owe over $1500.

I went to the dentist today and found out I need a crown.  Bad news is my new dental insurance only pays 50% of the crown or $450.00.  My goodness!!  It isn’t even gold!  Good news is I can use my health saving account.

There was a time when my finances were pretty comfortable.  Now when I should be looking toward retirement, I look for ways to pay our medical bills.  Good news is pretty soon we will both have met our $2500 deductible and won’t have to worry about it till next year.  Bad news is we have to save this year for next year.

None of this allows much room for putting aside extra for those rainy days.  I guess this is the rainy day.  At least I hope so. I seem to be working to pay medical bills. Don’t get me wrong, I want good health for both me and my husband.  But doesn’t it seem like maybe the medical system has us right where it wants us.  We don’t argue about the price.  We just pay it.  We don’t argue about the cost of insurance.  We just pay it.  We don’t negotiate.

The good news is that medicine is so advanced that we are living longer.  The bad news is that every penny we earn goes to pay for it.