Sunday, December 15, 2013

A TALE OF 23 YEARS



Trevor, The Tell Tale Dog, here again, to share with you another inspiring story of Brenda's life. It has now been almost 23 years, since Brenda was diagnosed with Rheumatoid Arthritis, at the age of 31.

It was a very dark Wednesday in May when she was in the rheumatologist's office, when he said, "I am afraid that this is going to take longer than we thought." He didn't even really come right out and say she had RA. Her nurse handed her a bunch of pamphlets, which were to explain, how she was supposed to live with this disease. She was supposed to go back to work after hearing or not really hearing this news. She was in shock and she thought her life was really over, as she knew it.

She had been having some problems for quite some time. In fact she had had an RA factor test done along with an ANA, because they were suspicious of Lupus, but that came back negative. The RA factor test however, was extremely high. She had had a bad bout with bursitis in her left shoulder, so they decided to do some tests. Her primary care physician was gone, so they sent her home to try and get that shoulder feeling better.

At this time, she was still not officially diagnosed and she went back to work, but over the next few months, she continued to get worse. Her hands, ankles, and feet were the worst at this time. In fact her left pinky turned into a trigger finger. She would have to literally pull it back with her other fingers.

She was walking to work, which I have no idea how she managed this. After she was diagnosed, she started using a cane. She was getting worse really fast. Her doctor and rheumatologist decided that they had to get her on something quick. They had discussed Plaquenil, but they both felt, that would take too long to start working, as she needed something right away. They thought Methotrexate would be the best option.

She started it, but it made her sick, so they had to lessen her dosage. She still would get so sick and fatigued from it. All kinds of things were happening. Her thick hair was now much more thin and she developed sores on her scalp, along with chronic sinus problems, which she still deals with to this day.

They tried everything, injecting it, but they soon ran out of places, because she developed scar tissue. So they would put the injection in yogurt or juice, but nothing really helped, she still got so sick. She finally just decided she had had enough. After 4 and a half years, she started weaning herself off of it and 3 months later told her doctor. She wouldn't recommend that you do this.

It was at this time, that she was able to start exercising again. She was doing her range of motion exercises, twice a day, which she still does. She wanted to start working out and it really seemed to help. Her fatigue lessened.

There really wasn't anything out there that she could really tolerate. Biologics were not even out yet. It was finally in 2001, that she decided she should start doing some research on Enbrel. She researches everything. They give her such a bad time at work about this. If there is something new they are talking about, they will say "Brenda, you should research this and she usually does."

Anyway, she approached her doctor one day and said, "I am finally ready to consider Enbrel." So they made all the necessary calls and she received a card and was put on a list. Yes, at that time being it was so popular, it was hard to get.

She went to her rheumatologist and he thought it could be quite some time before, she would get on Enbrel, so he wrote her a prescription for Arava. She never filled it. She felt the Enbrel would become available. She just wasn't comfortable with the fact of more hair loss or even worse problems which could occur because of this drug.

This was about a month before. On Friday, April 13, 2001 notice the date? It was also Good Friday, she received a call at work that Enbrel was now available and would she like to start it?

The next Friday, April 20th, she had her first injection of Enbrel. They had her stay a while after, because they wanted to make sure there would be no bad reaction.

The first couple of times, she had a headache or would feel nauseous, but that went away within a month. So every Thursday for almost 13 years now, she has been on what she calls her miracle drug. There are times when she cannot do the injections, like when she has any type of infection. She also keeps a diary, because it's hard to remember where you injected last, because you can't always tell. She now uses the auto injector, which is so quick and easy to use.

Living with RA while it can really be a challenge, can really turn out to be a blessing as well. You ask how can this possibly be so?

Someone once told Brenda that she was stronger than this disease and you know she is. Her strength was really tested when she went through her brain tumor surgery for her non-malignant meningioma on September 8, 2008. It was again tested, when she lost her primary care giver, which was her Mom, who passed away on May 31, 2011, from congestive heart failure.

While she was dying, Brenda was dealing with having to wear an air cast on her right foot, because an MRI confirmed that she had some torn tendons. They healed, but somewhere down the road, she may possibly be facing some surgery.

Her Mom told her 2 things. Live your life and grab something if you want it. She has been truly doing both. She spreads awareness and hope with my help on both fronts, living with RA and being a brain tumor survivor. She now has issues with constant nausea and motion issues because of the brain surgery, but she just keeps plugging along. She has managed to hold down a full time job throughout her diagnosis with RA.

I am going to close with one of my quotes. Life is what you make it, you can either choose to be a victim or a victor. Which have you chosen? I know which one Brenda has. She is doing some fantastic work with advocating and bringing awareness. She really wants to inspire and help people. It helps you as well, and really makes you feel better for doing something for others.

She has recently had some great opportunities coming down the pike. It has taken years, but she is beginning to realize, that you just have to take your blessings where you can get them.

This is Trevor, The Tell Tale Dog, until next time, wishing you peace and love.

Saturday, December 14, 2013

A Tale of Traditions

Well, it's Trevor, The Tell Tale Dog, here to bring you, some of Brenda's past holiday traditions.

Brenda used to really enjoy these and now things are much different, with no family close by, but
that is just the way it is.  We thought we would share some of what she remembers from when, she
was a little girl.

Brenda always enjoyed with helping decorate the tree.  The trimmings consisted of rings made
of different colored construction paper, that were put together with glue and made into strings,
that were put around the tree.  She always had a real tree, except for one year, when she was
told that they couldn't afford a tree.  There was a drawing at the school after the Christmas
program, and guess who won the free tree?  I guess that was what you could call a Christmas
miracle.  They had no choice but to decorate one after all. 

Some of the other traditions were of course the many goodies that her Mom would make.
Sparrows were only had at Christmas and a favorite of everyone.  There were deep fried
donuts with raisins in them and were usually eaten with butter.  Germans after all,
really know how to keep the calorie count down.  BOL

Another tradition was, that her Dad had to have St. Johns Bread or Johnny Bread, which was not
actually bread at all.  It was carob with seeds inside.  You would warm them up in the oven or
now, the microwave works also.  Personally, Brenda could not stand the smell of it.  Her
Dad and one of her sisters were crazy about it.  Not as easy to get, as you would think.  It
is found in the produce, but you would be surprised, how many people would try to take Brenda
to the bread section.

Another thing was buying Chocolate Covered Cherries for Dad, because he loved them.  Truth,
he didn't like them at all.  It was just an excuse for my sister who liked them, to get them for
herself along with dried apricots, if we could find those. 

Things like the Johnny Bread, Sparrows, dried apricots, were actually shipped, when we could
not all be together for Christmas.

Brenda always also enjoyed the various Christmas programs she was involved in, when she didn't
end up getting sick.  Looking back now, her immune system pretty much was bad even then.

Brenda favorites of her Mom's goodies were, her caramels, hopscotch, peppermint almond bark
rounds and of course her peanut brittle.

We hoped you have enjoyed this little trip down memory lane with holiday traditions.  We
wish you and yours a very Merry Christmas.