Category: medical

Coping with Pain and Living

pain level conceptual meter indicate maximumIt has been 15 years since I began a journey of living each day with chronic pain.  It hasn’t been easy but I do not take pain pills. I am finally at a point where I am comfortable with the daily struggle.  I have found some helpful things that doctors and therapist will not tell you about.  Coping is hard but to live a full life coping is essential. Peace of mind, contentment and a willingness to change your mindset can do wonders. There are also some useful treatments you can do yourself when the pain is intense.

Number one on my list of tips would have to be pity parties.  You are allowed to have them but set a timer for one hour.  At the end of the hour, fix yourself up.  Put on makeup, perfume, or whatever makes you look your best. If you struggle with this, at least brush your hair, brush your teeth and wash your face.  When you feel clean and refreshed you just feel better.

Number two is meditation.  Meditate with a montra, music, or prayer.  Breathe deeep breaths and realize how good it is to be alive. When your mind is calm your pain will decrease.  Meditation is very difficult when you are in pain but it is surprisingly effective. As pain increases, agitation and worry increases. As agitation and worry increases, pain increases. This creates a cycle of increasing pain.  Calming the mind, calms the pain.

Number three is spiritual awareness. This is the ability to let go of your responsibility to fix it. Sometimes things in our life are not what we planned.  An awareness of our spiritual beliefs and a feeling that we cannot control everything in life can ease our soul.  When pain is chronic it is easy to get bitter and concentrate only on the negative.  Look outside yourself. There is always someone in more pain, guaranteed. I believe in Jesus Christ as my savior and that belief gives me peace.

Number four on the list is smiling.  Try to smile whenever you look in the mirror.  Smile at everyone you meet.  It is extremely hard not to feel good when you are smiling.  A positive, happy outlook will make anything you are going through easier.  Even when my hair was falling out and I had a red rash all over my face, I got in a habit of smiling when I look in the mirror. I must admit I did look funny.

Those are the most important things on my list. They are also the four hardest.  Now I will give you simple things that help.

Heat always helps arthritic pain (swelling needs cold).  A heating pad is my best friend. I have wrapped my hand and my feet with one, sat on one, leaned on one and many other positions of comfort or comedy.  Of course, a hot tub is great if you don’t have high blood pressure. For arthritic hands or feet, a paraffin dip is fantastic.  If you hands get cold, sleep in gloves. My favorite is a warm bath.

Vicks Vapor Rub, or a generic version, is the most versatile of aids.  There are expensive over the counter medications with the same ingredient, menthol.  Rub this wherever you have pain.  It smells horrible but it works great!  If the smell is a problem there are many other products that work but they do cost more. Look for the highest percentage of menthol. If your hands hurt rub them with Vicks and put gloves on; for your feet rub and put on socks.

Stretching and exercise is very important.  My condition flares up after exercise so I quit exercising and my pain increased.  It is very important to keep your muscles and soft tissue strong and flexible.  I do yoga to keep my range of motion, balance and flexibility.  I often combine yoga and meditation. I go to physical therapy once a week to keep my muscles from atrophying. I have a treadmill and I try to walk everyday.

The best thing you can buy for pain is an e-stim, electrical stimulation, machine.  This is a battery operated version of the machines in use by physical therapist and chiropractors.  Most drug stores have these and they are available on Amazon for under $30.  If you decide to purchase one, buy one with leads and sticky pads.  This allows you to better target your painful areas.  Versions are available for various areas that are butterfly shaped with the pads and control in one device.  I have tried them and found they are great for small areas but require someone else to start them if they are for your back. And they are more expensive.

I truly hope my tips help you. Once you have your mind calm and your body exercised, take a warm hot bath with bath salts. Dry off well. Spray your bed with lavender scent. Hook the e-stim up, cover it with the hot pad and relax with deep breaths. You are alive! You are truly wonderfully made.


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!

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!

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.

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!

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.

In Honor of Nurses

Nurse’s Day is May 6.    No one deserves a day of honor more than nurses.  If you are sick,  your nurse can be the key to getting better.  The best medicine is a smart, caring and professional nurse.  Only a very special person becomes a nurse. They must be smart, dedicated, patient, organized, and canursering.

They must be extremely smart to pass all the courses they have to take.  I once took Anatomy for Medical Professionals when I was in college which was a big mistake.  I majored in math, but that had to be the hardest course in my undergraduate schedule. The amount of information they have to be able to remember is overwhelming. Many have advanced certifications that allow them to specialize. Some certifications allow them to resuscitate a patient whose heart has stopped. Others can administer cancer fighting medications or put someone to sleep for surgery.

A nurse actually provides your care.  They deal with the daily realities and unpleasantries of illness.  People are not nice to be around when they are sick.  Physically we are gross.  A nurse takes care of things only our parents have done before.  There is nothing more humiliating than being that dependent on another human being.  A good nurse can make you feel comfortable and save you a little pride.

I am not pleasant when I am sick.  I get whiny and  irritable.  I can not imagine having to deal with sick people every minute of the day.  I do not have the patience.  A nurse not only deals with it, but a good nurse makes patients feel special.  A good nurse can have the patient in the palm of her hand.

For routine care the nurse can be your best friend.  The nurse is the one who calls in your medicines, calls you with lab results, and takes your phone calls.  Generally, the path to the doctor is through the nurse. A good relationship with the nurse can facilitate good communication with the doctor.  The nurse is usually an administrative assistant,  research clerk, file clerk, evaluator, psychologist, chemist, janitor, recorder, and a caregiver.

So to all the special people who chose nursing as a career, I say thank you. Thank you for doing a job that is difficult and stressful.  Thank you for caring for us at our worst. Most of all, thank you for being a putting up with us.