PERICARDITIS

July 1, 2013

My stressed level seemed to increase weekly, no matter how many hours of sleep a night I had. Usually I had to take a nap when I got home from work. I tried to take all of the substitute jobs I could. The local vocational technical school was always in need of subs. I was a good disciplinarian and respected by teachers and students. I still remember feeling fine when I walked into the school building. But climbing up to the 2nd floor left me huffing and puffing. It was either 1st or 2^nd period and I felt my chest tightening. I had difficult time breathing. It felt more like a bad case of bronchitis without the coughing. The kick was how rapidly I started having chest pains, sharp stabbing pains. At that time, women were not the same as men when it came to having a heart attack.

I had a student go to the office with a note saying I gotten really sick and needed to leave immediately. I would try to stay until another adult came to take over the classroom. I certainly did not want to put a cramp in any future job offers. I drive myself home. One of my sons was still at home at that time and just barely had his license. He was in school when I called an ambulance. They carried me downstairs in a chair, off we went. This period of time still has some fuzzy spots in it. Recently my son told me he remembered taking me to the hospital, more than once. But this was the first time. I must've called him at school and told him I was going to the hospital. I remember him telling me at first he thought the whole thing was really cool getting to drive fast behind an ambulance with sirens and flashing lights. After that, not so much.

Well, I did not have a heart attack thankfully. The diagnosis was acute pericarditis. There is a sack, around your heart called the pericardium. When he gets inflamed it is called pericarditis. The pericardium holds the heart in place. Pericarditis is usually caused by an infection. A viral infection is the most common cause. Although a serious heart condition, with proper care, full recovery is possible for most people.

They put me in intensive care in the hospital. I was pretty sick and really had not wanted to see or talk to a bunch of people. The priest and my son and a BFF were good enough. Next door was a patient who always had company from breakfast to 10 PM. It sounded like a party. When I started to come back into the real world, I complained-please shut those people up. This was supposed to be a place for really sick people. The nursing staff enforced quiet hours and the number of visitors. But the neighbors were not my only problem. This was about the time health insurance companies were starting to be primarily in a profit making business mode as opposed to the healthcare business. I was admitted into intensive care in the early evening. After one full day the insurance company was ready to boot me out and send me home. My doctor and the nurses were flipping out. I was in no shape to put up a fight. I knew I did not want my 16-year-old son to have to worry about taking care of me, or worry that I might die. It took some creative coding by the medical staff to get me an additional day. However, I had to be transferred out of intensive care to a regular unit.

It was 12 years before I returned to substitute teaching. I did manage to keep up with a couple of days a week working at the department store. This was until one day I got out of bed and fell on the floor because of the stabbing and burning in my feet. I felt like I was walking on shards of broken glass. It was about this time that my cousin said, you need to think about filing for disability. I was raised to believe that with an education and hard work, you should be able to get a good job and support your family. I had never experienced living with a chronically ill person, let alone being one. My world was rapidly crashing around me. However, I was not going to give up the fight

MIXED CONNECTIVE TISSUE DISEASE

June 27, 2013

According to Mayo Clinic report #D500675, http://Mayoclinic.com/health.MCT, it is mostly young women who get this disease much like Lupus. It can also feature symptoms of Scleroderma and Polymyositis. I haven't gotten either of these last two diseases. In addition these symptoms don't present all at the same time. Mixed connective Tissue Disease often involves the fingers which turn white and numb. Raynauds had already been diagnosed for me by this time. In the later stages of MCT the lungs, heart and kidneys may be involved. AS in most of these autoimmune diseases it is difficult to get definitive diagnoses.

 

Symptoms of Mixed Connective Tissue Disease

• A general feeling of being unwell and sometimes an increase in fatigue.
  
• Cold and numb fingers. One of the most common early indicators is known as Raynaud's phenomenon in which your fingers feel cold and numb in response to cold or stress. Toes also can be affected.
  
• Swollen fingers. Many people with mixed connective tissue disease experience swelling in their hands and fingers.
  
• Muscle and joint pain. Next connective tissue disease can result in muscle aches and joint swelling. Joints may become deformed similar to rheumatoid arthritis.
  

When to see a doctor

Make an appointment if your symptoms are bothersome enough to interfere with your daily routine, especially if you have already been diagnosed with Lupus or another connective tissue disease. Doctors don't know what causes the disease. It is known as an autoimmune disease. In mixed connective tissue diseases your immune system mistakenly attacks the fibers that provide a framework and support in your body. Women under the age of 30 are at the greatest risk. You may not need treatment if you have a mild form of the disease.

Medication

• Corticosteroids. Prednisone is one of the standard drugs used to control your immune function. However, side effects can include mood swings, weight gain, high blood sugar and increase blood pressure or weakened bones and even cataracts
  
• Immunosuppressant. If your signs and symptoms of organ involvement, similar to those of lupus may call for a stronger drug
  

 

Resources

The National Organization for Rare Disorders (NORD): patient assistance programs, patient information Center online communities, news about clinical trials, patient stories, rare disease database, patient organizations database, advocacy alliance, news and events.

 

 

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Equal Employment Opportunity Commission

June 23, 2013

I was fortunate that when working in two Federal programs within a community based organization, there are resources outside of the local nonprofit. I went up the chain of command at the state level. I was advised that I should file with EEOC (Equal Employment Opportunity Commission). The director of the Department of Housing and Community Development felt it was a clear case of discrimination based on Americans with Disabilities' Act.

Since I was a program director, I had access to documentation of the things I had done, and memos and organization documents. Since this company was one of the biggest employers in a small town community, no lawyer was going to touch it. However, I was able to find an attorney who was also an advocate for the poor and disenfranchised. I also had to do tons of research.

I found an organization nearby that assisted in helping people requesting job accommodation. They also worked with companies in providing a workplace accommodation. It was called JAN or "Job Accommodations Network". It is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. Jan helps people with disabilities, and enhances their employability and shows employers how to capitalize on the value and talent that people with disabilities add to the workplace. (http://askjan.org/links). The Job Accommodations Network offers free consulting services for individuals with physical or intellectual limitations that affect employment, including a one on one consultation about the job accommodation ideas. Contact Phone number 800-562-7234. The service is offered through the US Dept. of Labor's Office of Disability Employment Policy.

The Jan counselors were terrific and were able to take my job description and duties and match them up as a request for accommodations for my learning disabilities to my employer. Well it didn't take long after I submitted a formal request that I figured out that they had no intention of complying. I was told that my employer was playing games and intentionally trying to intimidate me. This is when I knew it was time to find a lawyer. When I received my letter from EEOC TO proceed with legal action, I started to pack my bags. Not a good idea to sue your employer while still employed.

In the meantime, I started to look for another job. After all, I had a kid in college and my own parent loans for their education. Plus, I had a 2nd child just starting high school. After a five-week penalty, I got unemployment benefits. As a single parent, this was extremely stressful. Even though I still got child support for one child, their father didn't help at all with college expenses for the other. In addition, I owned a four bedroom house.

I was really positive that I would have a good opportunity to find another job with the experience and skills I now had plus my MBA (Masters Business Administration). I had interviews for some good jobs, but was not selected. I did some substitute teaching and worked part-time at a local department store. I had only worked full-time for about 6 years. Prior to that, I was a stay at home mom for about 10 years. So it did not take long before the bills started to pile up. The one bill I made sure I paid every month on time was the mortgage payment. I continued to wrestle with extreme fatigue and pain. This was given a generic diagnosis of "mixed connective tissue disease" (MCTD). It is actually a rare autoimmune disorder. The disease usually presents symptoms of three different disorders and is called an overlap disease. The primary component is Lupus. At the time I did not have a definitive diagnosis of Lupus. I always thought of mixed connective disease as what you called an autoimmune disease that the doctor really did not know what it was.

As the dollars dwindled the fatigue and pain went up. At one point I was in the hospital intensive care unit with Pericarditis or inflammation of the lining of the heart.

HOW DID IT ALL BEGIN: How Did My Life Take Such a Hit?

June 20, 2013

Since this blog is about how a person who is smart and well-educated became so bad off, both physically and financially, well, how did it all start? What was the big trigger event? Prior to the "big trigger event" I was on my way to work and just a half a block from my office when I was struck by someone who ran a red light and slammed into the driver's side of my car. It didn't hit the door, but spun me around. I was not really injured except for "whiplash" this was about 1993. The aches and pains never went away and I became more and more exhausted. I took a three-month disability leave and was diagnosed with Fibromyalgia, but I got it under control and I went back to work.

Then in 1995, I had to resign from my job as a program manager in a nonprofit organization. Basically the job was making me sick, according to my doctor. I had loved my job even though I didn't make much money. I was able to bring the program through a fast-paced metamorphosis of technological change. It became one of the top 3 programs in the state. Most of the Funds for my Programs came from "Pass through Federal Funds".

There was a change in supervisors. I went from being that "Golden Girl" to being marked as expendable. It was a complex situation. I was diagnosed with Attention Deficit Disorder and was informally accommodated with two great secretaries. So there was no need to disclose. I tried to learn all I could about Attention Deficit Disorder. I recalled all those years in elementary school, daydreaming and spending more time looking out the window then at the blackboard. In addition, I have a son with ADD. Now at last, I began to understand why so many things were frustrating and why I would always get distracted. However, in 1995, the general public did not believe that adults had ADD. It became more and more of an issue on my job as I was constantly criticized for not dotting all my "I's", nor crossing all my "t's". My 1st supervisor gave me outstanding evaluations. My 2nd supervisor never gave me a evaluation. There were other factors too. My 2nd supervisor had no secretaries and I had two. I was also working on my MBA. The CEO of the organization never completed her MBA.

 

EAR, NOSE & THROAT DOCTOR---SO WHAT IS NEXT?

May 22, 2013

I returned to the ENT. He didn't have much of an answer. He only did a basic in your face exam. I have waited and waited for someone to come up with an answer to my questions. Why did I develop vertigo, dizziness or vestibular neuritis, or whatever you want to call it? What was the cause? How about a definitive diagnosis. Why won't it go away? The waxing and waning drives me crazy. How do you fix the problem? The ENT thinks it is a form of benign positional vertigo, but does not know which ear is the problem. He also sent me to the neurologist because he thought I might have Hydrocephalus, which is caused by the "interference with the normal circulation of the cerebrospinal fluid (CSF) in the brain. CSF filters through a membrane in your brain. And later, is reabsorbed from these subarachnoid spaces above your brain."

"In adults, there is a variation of hydrocephalus, in which the pressure is normal, but the re-absorption is defective." Mayo Clinic Family Health Book, David E, Larson, M. D., Editor-in-chief; William Morrow and Company, Inc., New York, 1990.

He asked me if the neurologist mentioned it. Well, no, why do you ask? There is no neurological indicator for my vertigo. Now he wants me to go back to the hearing and balance testing people to see if there's been any change. Since I already did these tests 6 months ago, I can tell you there have not been any changes. I think it is time to think out-of-the-box and get a 2nd opinion.

The physical therapist thinks I have vestibular neuritis. I will say I am getting him to start to think out-of-the-box ie. Consider the effect of stress on the dizziness. By now, I can do all the little exercises with very little if any negative impact. i.e. Provoke dizziness. My balance is much better when I stand on a pillow.

However, when I walk my head feels like it is going to roll off, or it gets filled up with cotton. My head can also feel like someone put a rubber band around it and tightens it. The dizziness occurs when it is dark and when I am tired. It can also occur when my brain goes into overload from too much visual stimulus. The grocery store is the worst. Next is Wal-Mart. I can get so overloaded that I can't function. I can't figure out where to go or what I need to buy. It is totally overwhelming. This is followed by high levels of dizziness.

I feel that the more I practice, not using my cane, the faster I will return to a normal state. It forces my brain to use the input signals (eyes, body sensing signals and touch) to walk and move without getting dizzy. I feel like I'm learning to walk all over again. When I go to school on a substitute job and feel okay at first, I will take a folding cane and not use it. By the end of the day, I will feel really tired and start to feel dizzy. This is when I have to monitor myself in the level of dizziness. I often get asked if I'm afraid of falling, my answer is no. Even if I do fall, well, you just get up. I continue to find it very annoying when people treat me like I'm a frail old woman. Get a grip folks I'm only 66.

Another thing that pisses me off is that more specialists are not accepting Medicare or my state Medicaid. This has meant I have had to pay out $35-$40 co-pays +20% not covered by Medicare. These doctors do not even think about how this might affect their patients. I just got done paying off the bill from the round of hearing and balance testing. Now I am supposed to go back next month. Plus, I return to the ENT at the end of June and I still owe him money. Even physical therapy once a week is $140 in co-pays for the month. The month of June means extra medical bills as I go into loss of teaching income. The medical community does not seem to get it. There's a reason I have Medicaid. How do these folks think poor people are going to pay those co-pays and other medical costs, just because they don't want to take or be a provider? No wonder low income people and/or especially those at or below the poverty line do not go to the doctor or get their scripts filled. This causes a worsening of chronic illnesses and the development of new winds. This affects people's ability to work and take care of their families and home.

 

POT- AS IN FLOWERS

May 10, 2013

Have been busy cleaning and bleaching my pots to use for flowers. I attended a "planting in pots" workshop given by the local extension office about a month ago. I have not emptied my flowerpots and scrub them in a long time. The pansies I planted in the window boxes (they droop a little on the old front porch) are large and their yellow and deep blue colors are real eye poppers. Since I don't have a lot of money to purchase flowers, I purchased geraniums. I put them in clay pots and put them around my small perennial garden. The key is a pop of color. I also keep my geraniums over the winter by pulling them up out of the pots. I trimmed them back and shake off the soil. Then they are placed in paper bags and put into the pantry where it is cool and dark. Depending on the weather, I will set them in their bags on the enclosed (but unheated) front porch. This is usually sometime in March. In a couple of weeks I get them potted and remove the dead stems as the weather warms up, they quickly produce leaves. Since I do not have a heated porch, I do have to wait a little longer for flowers. However, it cost a lot less.

If you wonder how a person with balance disorders can do gardening, it is due to the waxing and waning of my dizziness. I do have some days when I'm okay. My body lets me know when it is not a garden day.

BEING POOR AND TECHNOLOGY

May 2, 2013

I was unable to find a ride to the University to see the neurologist, even after asking 5 people. Several people suggested I try to have my MRI results transmitted electronically. Then, if he thought I should come back, I could set a follow-up appointment at that time with the neurologist. I called the radiology center to see if they could do this, the records Dept. confirmed my information and told me it was done. Just click a button, amazing- stress vaporized.

The bottom line was that the neurologist just could not find any neurological reason for all of their vertigo and balance, dizziness problems. So, back to square one. Huge let down. I have an appointment with my ENT at the end of May. So what's next, have already started searching on the Internet for another university that actually has a program that specializes in balance disorders. So for now, there's not much else I can do but let go of it for a while