Family: Friends or Foe?

February 25, 2012

I knew I could not solve the heat problem alone and would have to ask for help. Begging is not something that comes easily for me. However, how your family sees you and your illness can have a huge impact on the quality of your life. I have not seen one adult child in over four years even though they live nearby. Another adult child has been trying to exit out the back door of my life for the last couple of years. This one has my only grandchild. I have gotten some help from this one over the years. However, he does not try to understand the complexities of invisible chronic illnesses and chronic pain. I've actually been called a drug addict. Neither one of them understands or knows how to deal with the ups and downs of energy levels. What really frustrates me is when one of them wants to tell me what I should and should not do about my struggles with these illnesses. I have even been told I ought to go into a nursing home! Yet they will not even make an attempt to read books, check out reliable we sites about them or attend a local support group.

Now an oil company has put me in a position of having to go to my children and ask "beg" for help. I believe they should both help. They have good jobs. I asked them how long they were going to hang onto their bitterness and anger. After all I raised them as a single parent. I was the one at their sports events and other school activities etc. When I told them I could not get any more oil and would have to find a place to stay until the end of the heating season, one was shocked and the other's reaction was more anger and finger pointing. My only solution at this time is to buy an infrared quartz space heater to help heat the downstairs along with the wood stove. I hope I can save enough fuel oil in the tank to at least heat the house in the morning since I turn the heat down to 62 degrees at night.

Number Crunching Gets Smashed

February 21, 2012

When my stress and anxiety levels go into high speed my ability to do math almost evaporates. I struggle to even add and subtract. Now I have to add another $100 or more into my budget that does not break even. It is difficult to make a budget when your income changes weekly. I really haven't gotten a chance to celebrate getting my garage studio rented to a young couple, after five months of it being vacant. Now it felt like I was not going to recover and get caught up on other bills and repairs. I felt like the rug was slipping from under me with a large looming hole under the rug. Over the last six months I have seen all my hard work to rebuild a credit rating after having gone through bankruptcy slipping through my fingers.

When this level of crisis comes into my life, I first cry and feel sorry for myself. Next I get angry. Then I go to work. I do my homework to find out what are my resources. I have felt for a long time that putting my budget on a spread sheet might reduce my anxiety about money or make it worse. I just never seemed to find the time or energy. It has been a long time since I used a spread sheet. I certainly don't have funds to purchase home budget software.

I found a template in Microsoft Works under "Home & Money": Financial Worksheets-monthly "Home Budget" which is a simple, easy to use spreadsheet. It can also be edited to my personal budget lines. I was proud of myself for getting it set up. Plus there is research that learning new and challenging things may help to prevent Alzheimer. The spread sheet will defiantly help during times of stress by just crunching the numbers. It was no surprise to me to see how I'm always coming up short. Are there any lines that can be eliminated? Heat is not one of them.

DISABLED SENIOR DENIED HEATING OIL

February 20, 2012
Last Wednesday, I got a call from the oil company announcing that they were going to raise the monthly payment plan from $71 per month to $250. I was dumbfounded. I replied that less than a month ago my account was in good standing. Now I'm being told if I didn't pay $250 a month my account would go into collections and I'd be taken off the even payment plan.
In addition, I could not get any more oil until the whole account was paid off. So I stammered that I had less than 3/8 tank left. I would need more oil in less than a month. Why had this happened? I felt like I could not breathe. I wanted to scream. I tried to tell them about my hands turning white and getting numb when the temperature got below 68 degrees. I told the oil company I am already heating at least half the time with a wood stove. Heating with wood is hard work and physically I could not do it as the only source of heat. The oil company made me feeling like I was somehow irresponsible. Yes I had paid my bill late a few times but I thought I was caught up. Now they gave me only a few days to tell them what I was going to pay. I was waiting to hear about my energy assistance application. By now I was getting angry. I had tried to be very frugal by only ordering a minimum delivery which costs close to $500 for 125 gallons. Fuel oil is more expensive than gasoline. However, the price per gallon has not fluctuated much since last fall. Last year my payment plan was $150 per month. I use about the same amount each year. Each year I have tried to set the thermostat lower and lower. So all of a sudden I am now going to be homeless even though I actually have a home. On top of this I am almost out of wood. Bottom line, low income families can no longer afford to heat their homes with fuel oil. There is a real problem here!

Blue Elephant- Sjorgen's Syndrome

February 11, 2012
I use to read a children's book to my kids about the Blue Elephant in the Bathtub. A little boy kept telling his parents about his very large blue friend. His parents could not see the elephant so they told him it was not real. For the little boy the blue elephant was very real indeed.
This is how I view my chronic health issues. A lot of people do not even know I am on disability or have chronic illnesses. It is all invisible unless a person is around me for a day or two. In a lot of ways I like it this way. I am not treated any differently and I feel "normal". On the other hand, I lost a job over my "blue elephant". I had been getting informal accommodation until there was a big change in personal. More details in the future. However, it ended up in an EEOC (Equal Employment Opportunity Commission) lawsuit in violation of ADA (Americans Disability Act).
I have had an autoimmune disorder since I was a teen but did not know it. I only remember hanging out with my friends at the "Hot Shoppes". They would eat the burger and fries followed by a drink. I had to drink some soda after each bite.
After college I had to stop wearing contacts because there was so much sand and grit in my eyes. In the 1980's a dentist diagnosed me with "Sicca syndrome" or dry mouth and eyes.
NIH (National Institute of Health)
The dentist recommended me to a study at NIH. I helped to develop a medication for dry mouth problems. It was a really good experience. I learned about what was going on in my body and was treated with acceptance. I didn't feel so much like a freak. Even today Sjorgren's syndrome (SS) is considered "one of those unusual diseases". In Sjorgren's the body attacks itself, especially the salivary glands and tear ducts. Sjogrens is a systemic disease that can affect many organs of the body including the lung and the kidneys.


No More Spices Please
For me it has caused problems and money related to my dry mouth. My salivary glands are impacted with white blood cells. I've spent enough dollars on dental work to purchase a car or even a house. In the end I lost all of my teeth. Sjogrens teaches you the value of salvia. There are many foods I simply cannot eat: hot wings, most spices, barbeque sauces, crackers, popcorn, soft and hard bread and lots of meats unless covered in gravy. Even peanut butter can get stuck in my throat. I eat a lot of fruit and soft foods. I have to read the labels carefully for the spices. I generally have to make my food from scratch eating small portions because it takes so long to chew food and to keep from choking when I swallow the food.
However, I have no problems eating ice cream. I use to weigh 200 lbs. on a 5'3" frame – a bit roly- poly. Then a swallowing disorder kept me on an almost liquid diet for 9 months. I lost 65 lbs. However, I do not recommend this as a way to diet. It only takes a couple of terrifying chocking episodes to realize this.
In the scheme of things Sjogrens has been a nuisance for me. I use the medication "Salagen" I helped to develop. I also carry a water bottle with me at all times – even in church. I guess I won't have to worry about drooling in my advanced years.
So how did I actually get on this ride? According to researchers I worked with at NIH there is evidence to suggest that viruses play a role especially the Epstein Barr virus (EBV). It is a member of the herpes family. Mononucleosis is a severe form of EBV. In the sixth grade I was seriously ill with "mono" the first four months of school. This may have set me up to be a recipient of Sjogrens. My "Blue Elephant" has a friend "Ray" or Raynauds. Meet him in an upcoming blog.
RESOURCES
The Sjogrens Syndrome Handbook from the Sjogren's Syndrome Foundation, 6707 Democracy Blvd., Suite 325 Bethesda, MD 20817. Toll free Number: 1-800-475-6473 http://www.sjogrens.org
Sjogren 's syndrome –Mayoclinic.com

WebMD, Arthritis Health Center Community TV http://www.webmd.com/rheumatoid-arthritis/arthritis-sjogrens

PACKING UP THE CHRISTMAS TREE

February 3 2012

Yes I just finished packing up the artificial Christmas tree. I am not one to put up our tree by December 1. My parents didn't put up the tree until Christmas Eve – after we children went to bed. As we got older we got to go help pick out a tree. Typically it was decorated close to Christmas Eve. This way the magic, beauty and wonder of the tree had the highest impact and you weren't bored of it. It was close to 12^th Night or the 12 days after Christmas before the tree came down.

In more recent years I have kept the tree up for the month of short dreary days with little sunlight. The kids are grown and gone and the grandchildren live too far out of town. I find keeping the tree up is a way to jump start early spring and out of SADD.

LET THERE BE LIGHT

• I now use Phillip's Wake-Up light. Check it out http://sadtherapylamps.com/phillips
  
• Or some others to look up: SunBox Company www.sunbox.com or
  
• Bio-Brite www.biobrite.com for sunrise clocks and light boxes.
  
• National Organization for Seasonal Affective Disorder (NOSAD)
  

A NEW TIRE

January 28, 2012

I am in the waiting room of a local tire place. I had let my inspection sticker expire over the holidays – just did not notice. This past week I got my 1997 Toyota Tercel inspected. With 170,000 miles on the car it is getting to the point of inspection anxiety. It past. Yeah, but with a warning about a rear tire and not enough tread for good traction in the snow.

There was a time in the past that car maintenance was routine. You did not buy one new tire at a time but four new ones. I was a bit surprised that the inspector did not say anything about the muffler. It makes that hot rod noise. So a new muffler along with a new door handle is on my list of negative dollars. The muffler is on the border between hot rod sound and siren sound. So which cost more the ticket or the muffler? The lack of car maintenance is routine for many low income people. My list of negative dollars grows and includes an oil leak.

It is not just car maintenance, if you even own a car, that is a problem but home maintenance too. 40% of low income families own a home. My home was part of a divorce settlement when my children were little. It still needed a lot of work back then. There were a few growth spurts. In the last 5 years it has been mostly backslides. You know things are getting bad when you can't get the last emergency repair bill paid before you have several more in a row. My washing machine has not drained properly for almost a year. A friend put my snake down the drain pipe and it didn't help much. Now it is time to call the power eel guys. Last spring my roof started leaking in the family room. It was so bad I could not get the five gallon buckets emptied fast enough. Fortunately it was a simple fix for now. I had to tear out several rows of wet ceiling tile and insulation. I had planned to have it fixed before winter. Then the water heater crashed and I had a flue fire. Get the picture!