Tag Archive: sarcoid


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!

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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.

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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!

 

 

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.