A Good Movie

 Far Guy and I are watching Vikings Valhalla on Netflix at night.  It isn't as funny as Norseman but still entertaining enough for us...it is fairly violent so it is not for the squeamish.  The special effects and wardrobe department did an awesome job on this series and we hope that there is a second season. 

I keep reminding Far Guy that Vikings are his people...as the Vikings bodies naturally developed Alpha 1 Antitrypsin Deficiency because they ate so much fish and would get worms....of course they only lived to be 40 or 50 years old so the effects of Alpha 1 were all positive ...they didn't get worms.  However they did pass their genes on down the line.  Far Guy has both genes, our daughters are carriers and we have one grandson that also carries one gene.   

A few days ago it was rare disease day...since Far Guy is lucky enough to have two rare diseases  (Trigeminal Neuralgia and Alpha One Antitrypsin Deficiency)...I thought I would at least mention it. 

Back to the movies. 

My Niece Stacy sent me this photo...she said "It must have been a good movie!" 

Dad and Mom with four of their Great Grandchildren.  ( I am guessing that the movie was The Yearling)

Far Side

February 29 Rare Disease Day

Far Guy is a bit of an expert on Rare Diseases as he has two of them.  Seems he won the Rare Disease Lottery.

The last day is February is Rare Disease Day every year.

Far Guy was diagnosed with Trigeminal Neuralgia or TN on December 25, 2007.  Even I recall the date.  He spent two weeks in extreme pain until the medication took effect.  Trigeminal Neuralgia is often called the suicide disease as the pain is so intense and relentless.

The pain is like a cattle prod to the side of your head and then burning that is constant.   There are many different medications and combinations of medication over the years he has tried them all.  He has also had injections into the nerve and acupuncture.

Right now Far Guy is in remission and off all medications, he has a wonderful Neurologist who he sees several times a year.  We are so very thankful for a good Doctor and for remission, we hope the remission lasts forever.

Far Guy was diagnosed with Alpha 1 Antitrypsin Deficiency on May 18. 2015. 
Alpha 1  Antitrypsin Deficiency is an inherited/genetic disease.   Alpha 1 is a protein made in the liver, when you get a lung infection the protein goes from the liver to the lungs to protect them.  In people with the deficiency like Far Guy the proteins are in the liver but the wrong shape and they are stuck there so they cannot travel to the lungs to do their job.

Alpha 1 is rarely diagnosed although there is a confidential free blood test available at Alpha 1.org The blood test there is the ONLY reliable test available in the United States...sure you can go to your local clinic and have the test but don't count on the results being correct.  Everyone who has any kind of breathing problems should be tested in my opinion.  I was tested..and I am normal so our daughters got one bad gene from their Dad and one good gene from me.  Only one of our grandchildren has a bad gene.

Far Guy receives weekly infusions of the protein to protect his lungs.  Right now his lung function is about 20%  He is presently on The Lung Transplant list at the University of Minnesota.  Our bags are packed and we are ready to go when ever they call.

We are very careful...we don't go very many places in the winter time.  Fragrances, smoke, cleaning solutions, fabric softner, hair spray, smelly shampoo, gasoline fumes, exhaust from vehicles all make difficult breathing more difficult.  The candles being extinguished at church...many things that a normal person doesn't even think about cause breathing problems. A simple cold can end up with a stay in the hospital.

1 in 8,000 people get Trigeminal Neuralgia.
1 in 2,500 people get Alpha 1 Antitrypsin Deficiency.

I suspect that one person getting both rare diseases is very rare.

Far Side

Ongoing Projects

Every day or two I pick a project to FINISH.  My desk is cleared off now…so more projects will accumulate there.

Can you guess what this is?

I designed this pattern last year.  No it is not a winter bikini top for a skinny minnie with no boobs.   I used a heavy chenille yarn that is very soft. 

The sleigh bell Christmas ornament project is completed.  Well ahead of the 2018 Christmas deadline. I hope I don’t forget about them.

I contacted a “bell expert”  who said that these bells on a brass stand were most likely used on a dinner table and maybe the guests used them to ring in the new year.  Since I wasn’t planning any such dinner in the future the bells were taken apart.

There was a screw that held the base onto the bell.  Far Guy removed all the bases and ribbons were attached at the point where the screw attached and then the screw was replaced holding the ribbon firmly in place…it worked perfectly…the extra brass “stands” are now in the button jar along with one small bell without a dinger.   It was a fun project but I am glad it is done.

Still guessing what I crocheted?

No… not a bank robbers mask.  It is a face mask that people with breathing problems can use in the winter…the yarn is heavy enough to keep out the cold and the way it is designed air can be warmed up before you breathe it in.  This one serves a dual purpose as it is soft enough that Far Guy can wear it next to the right side of his face where his Trigeminal Neuralgia resides.  When he puts his parka on you only see his eyes.

We have a fellow at woodcarving that complained about breathing in the cold air…so I made him a mask also.

We struggled for years to find something that worked for Far Guy…we have a whole collection of face masks…that were either too tight, too loose, too cold…this one is just right.   One skein of bulky chenille yarn from wallyworld makes two facemasks. 

On the road

Far Guy had an appointment yesterday (the last one this week!!)…well it was Friday anyways …duh?

He saw his Neurologist for his Trigeminal Neuralgia, nothing has/is changing other than old age neuropathy that may require a cane.  He has a walking stick, but the Doc wants him to be fitted correctly so he will go to Physical Therapy for instructions.

It was too warm and sunny for Chance to go along, so he stayed home and guarded the house and we made the two hour trip over and back and an hour there for the appointment. Five hours total.  Chance was happy to see us when we returned!

This is what will greet the We Fest thousands of people the first weekend in August. What a mess. Welcome to Detroit Lakes Minnesota and the construction season every summer.

Finally almost home, no freaking traffic or construction areas.

Perfect.

I get real bored in the car and usually have my camera ready, if I take photos I am not falling asleep.

So this was our daytime date, no stops …just trapped in the car together for four hours. We saw one accident and several other situations that could have been accidents if we had not been paying attention…I swear some people should not be driving.

Cross another Doctor’s appointment off the list. It is often said that there are really only two seasons in Minnesota …Winter and Road Construction.

Patience and Patients

We had a mid morning appointment far away. It was –12 F Friday morning.  So we were up early.  I am so NOT a morning person.

There is no snow over there…oh maybe a few piles here and there but not much snow for this time of year.

Construction is already going to start over there.  Good thing we had our appointment before they started.

We have seen this before…it is called job security.  Put in a street with a median then in a couple of years remove it. 

Well anyways we were there a half an hour early.  The Doctor was running an hour late which turned into an hour and a half.  So we were there over two and a half hours.  We decided not to have lab work done there because that usually takes well over an hour, so the Doc ordered lab work to be done at our local clinic.  Ten minutes and you are in and out locally.

Far Guy’s appointment with his Neurologist went well, I need to keep a better eye on him and his medication.  He has been having too many Trigeminal Neuralgia flares.   The Doc and I would like to see him in less pain.  

On the way home I got hangry…that is hungry and angry and was too bossy to the driver so I got to drive.  We walked Chance and gave him some water.  He was a very patient boy…unlike me.

We stopped by Hometown Crafts which used to be Ben Franklin in Detroit Lakes…I just needed two ink pads…how hard can that be?  One brown and one black.  I got the Chocolate Brown one but they were all sold out of the black and don’t stock refill ink except in fuschia, iris, sandlewood and some more gosh awful colors.  They also had some of those dry as a bone ink pads just like our local Ben Franklin.  I could come back at 5PM and talk to the gal that does the ordering…REALLY???  That is so not happening. I would have died from starvation by then…

We finally made it to our favorite “After a Doctor’s visit place to eat that serves breakfast all day.”  I had blueberry pancakes…Far Guy had a Southern Biscuit Chicken something.   I think I was just too hungry as it did not sit well with me and it is just sitting in my stomach many many hours later….was it the pancakes or the coffee I had in the waiting room whilst waiting?

We stopped by “the home” and visited with a friend who now has a new knee. He is in rehab for another week maybe longer since he lives alone and has to take care of himself when he gets home.  He was happy to see us.  Didya know that that big incision for a knee surgery no longer has stitches or staples…it is glued together and then a clear tape is put over the whole thing?  They no longer use that machine that bends your knee back and forth for hours either.

Rare

Today is a day set aside to acknowledge rare diseases.

A Rare or Orphan Disease is :
A disease or disorder that affects 200,000 or less people in the United States.
Usually has no cure.
Often misdiagnosed.

If you tell someone what you have more often than not they say “never heard of it.” OR “what the heck is that?”

It becomes even more scary when Health Care Professionals/ Doctors have never heard of it.  How can they help you with something they are unfamiliar with?

Far Guy has two rare disorders/diseases.

Trigeminal Neuralgia diagnosed in December of 2007.  Luckily he had a smart Doctor in the ER where he was diagnosed immediately.  In retrospect the ear pain that he used to have with no ear infection was a sign, so were the toothaches with no abscess. Trigeminal Neuralgia can be a hereditary disease…so far we know that two relatives suffered with it.  There is no magic cure, pain is “managed.” Some people are helped with brain surgery, others not so much.

Alpha 1 Antitrypsin Deficiency was diagnosed by a blood test in April of 2015.  We noticed a pamphlet in the Pulmonary Doctor’s office.  When the Doctors used to tell him that he had bronchitis and would just have to get over it they were in effect damaging his lungs.  A1AD is a genetic disorder, you can have a combination of bad genes….or you can have a combination of good and bad.  There has been some recent discoveries on the diseases beginnings.  The Vikings had a problem with all the raw meat and fish in their diet…and they got worms.  If their genes mutated they were not bothered with worms… but they had lung and liver problems instead. There is no cure, but treatments given weekly by IV replace the missing protein, so you can help fight off life threatening infections. Testing is free.

Spoons…and how many do you have?  Unlimited?  People with a rare disease have only a  few spoons available to them in any given day. ( Every activity takes a spoon)  Everyday is different…how you manage your spoons becomes a challenge.  Some days there are only enough spoons to manage day to day activities and nothing extra…

Both of Far Guy’s Rare Diseases are not readily visible.  He looks normal and reasonably healthy …well except for the oxygen that he wears some of the time.  He often gets the “Well you don’t look sick” comment.

Lack of knowledge is something that we the voice of the rare disease have to fight continually.

A little sunshine

Yes the rain turned to ice and now the walk is slippery…but we had some sunshine.

We almost had some color near sunset too.

I scraped on the ice some…where the snow fell off the roof and scared Chance…that snow is like cement….if I had a pick axe I might be able to budge it.  I hope for a melt…and that rain can stay away it is nothing but a headache.

Nothing is new…no big projects have been completed lately.  Same old same old…laundry, dusting, wonder what to cook and do up the dishes. We might be in a bit of a rut.

Far Guy has his Neurologist’s permission to decrease his Tegretol…he is down to one tablet a day now with hopes to be Tegretol free in a month.   The Aralast that he is infused with every week for his Alpha 1 Antitrypsin Deficiency has made a difference in his Trigeminal Neuralgia pain OR his Trigeminal Neuralgia is in remission after eight years.  We wish we knew which one was responsible.  From my perspective, I think Aralast could be a cure for Trigeminal Neuralgia pain…but I am not a medical researcher or even a Doctor… I am just  an observer.  Recently I read about a study being done with Tegretol as a medication to fight off the liver damage in Alpha 1 Patients.  I have a cousin who is in Medical Research, he is working on trying to find a researcher or two that might be interested in researching a connection with these two rare disorders.

Second Snow, Alpha1 and TN

Yes it snowed, but it mostly melted.

Chance and the snow along the edge of the woods.

I didn’t even move the snow shovel to the front door yet.  My sister in law has hers all ready but she lives further north than me!

Alpha 1 Update:

Far Guy has a new Pulmonary Doctor, his last one went into Sleep Medicine so we were without a Doc for a bit.  The new one is from Poland, he speaks English quite well and is easy to understand. (He went to Medical School in Iowa) I think he will be okay, Far Guy got a Kenalog Injection..it seems to help with his shortness of breath. We now have antibiotic and steroids on hand in the event that Far Guy gets sick …we are to begin the medications immediately…the instructions were IF AFTER FIVE DAYS HE IS NOT BETTER HE NEEDS TO BE IN THE HOSPITAL.  I like that I have a hard and fast rule to follow.

The every Thursday Infusions are going well for the most part.  They are not as scary as they first were…Far Guy is working on getting the needle sticks down to one good one…he has done four sticks and two sticks…so he is improving.  I made a step by step list of how things are done so he can refer back to it if need be.  Part of the problem is that his port moves around in his chest a bit…so you have to make sure you anchor it.  He had Lynn at the infusion center check it out and she agrees..the port moves.  The infusions always tire him out.  We stick pretty close to home Thursdays and Fridays…only going for a short ride with the dog.

900+ people a year have to give plasma so that this treatment can continue for just one individual.

I have been in contact with my cousin Kurt who is involved in Medical Research. I also mentioned this observation to the new Pulmonary Dr as his wife is a Neurologist.

Since beginning the infusions with the Aralast for the Alpha 1 Antitrypsin Deficiency the Trigeminal Neuralgia pain is much less.  Is there a connection?  Our regular Neurologist says  “No they are not related.”  I am not so sure…how many patients are there out there that have both of these rare disorders?  1 out of 15,000 people get Trigeminal Neuralgia and 1 out of 5,000 people have Alpha 1 Antitrypsin Deficiency.

What are the odds that one person would get two rare disorders?  What are the odds that the treatment for one of the rare disorders would make a difference in the other?

I don’t begin to understand all this…but perhaps it will benefit someone else someday.

TN Awareness

Yesterday was Trigeminal Neuralgia Awareness Day.  It is marked by a teal ribbon.

Far Guy has had Trigeminal Neuralgia since Christmas Day 2007.  Six miserable years.  Right now he is taking only one medication.  He weaned himself off of the one that made him feel brain dead. 

 

When you have TN you need a good Neurologist.  Far Guy’s opinion and mine differ on Doctors.  He thinks that his Neurologist doesn’t always listen to his complaints.  I think he listens he just doesn’t have any solutions.

I can tell you that it is no wonder that the suicide rate amongst those with TN is very high.

What we have found what helps, taking your medication on time, NO STRESS (easier said than done for a Type A personality), never leave home without a hat, cap or something hooded.  Even a slight breeze can trigger a bad “attack.”   I don’t care if it is summer or winter. Ceiling fans are  the worst, and places with high ceilings that have air currents….like the grocery store.  Sometimes he must eat softer foods, he never eats anything crunchy.  Sometimes it hurts for him to talk, I can tell when that happens because he talks funny.  Chance is very in tune to him, he could be a TN Service Dog, he doesn’t like the wind either and he knows when it is time to rest.  Chance will take him by the hand and lead him to the couch or to bed.

People with TN look normal, they don’t have a visible sign of the rare disorder.  Unless of course their hats give them away.  They don’t have “headaches” they don’t like to have their faces touched, they don’t like to hug women especially ones with fluffy hair.

In six years we have tried just about everything that we can.  Different medications, different Doctors, different oils, acupuncture, chiropractor and nerve injections.  We even thought about hypnosis, I used to work with a hypnotist years ago, I attempted to contact him and found out he was deceased. Fat bunch of help he is now.

The pain is misfiring nerves out of control…the pain feels like a cattle prod has touched the side of your face/head.  Sometimes many times a day, sometimes a few times a day. Then there is the background pain that never goes away. Far Guy has Atypical Trigeminal Neuralgia, the rare form of the rare disorder. 

There are some things we cannot control.  Weather systems moving in make for a real miserable day. The wind, no one can control that either.

We will attend a support group in the St Cloud area during the winter if the weather cooperates.

I know there are many of you out there with TN that read the blog.  I pray everyday for a cure…I am sure you do too..Shirley and Lisa please know we think of you often:)

 

Fall is visiting and a TN Update

Fall came a visiting yesterday..and is going to stay for a long weekend.  40 F or 4 C.  The snow is melting:) 

Forty degrees in December is something to celebrate in Minnesota.  I sat out in the yard in my shirt sleeves with no coat.

We had a busy day yesterday.  We left before daylight for a long drive.  To a Trigeminal Neuralgia Support Group Meeting.  Far Guy felt like he learned some things and his feelings toward Doctors, medication and the frustrations of TN were validated.  I kept telling him he was not nuts and I was sure that other people shared his feelings..and they do.

No one within the group has had the Steroid Injections in their face..nor had they heard of the procedure.  They made lots of painful looking faces when Far Guy described the procedure. The long needle and the pain he endures during the procedure.

Far Guy’s last injection was on September 20 and it did nothing.  Or at least that is what Far Guy says.  I think it did something, it kept the painful zaps at bay but not the everyday pain.  He is scheduled for another injection soon…he has had it with the zaps..which lately have brought him to his knees and unable to speak.. it is time.  Perhaps this is the injection that will keep the pain at bay for six months or more..other people that we know are pain free..so why not him? 

The guest speaker at the meeting was a Neurologist, she seemed to have different opinions than our Neurologist.  She refers most of her patients to the Mayo Clinic..and most end up having some kind of “procedure” which may take the pain away for awhile..but many report that their pain is back.  One lady there said that she has been pain free since starting her one tablet of Tegretol a day and that the rest of us were scaring her.  One poor fellow is bilateral..he has TN on both sides of his face and has had it for 16 years. Another fellow had a “procedure” at U of MN that made half of his face numb..so he cannot tell if he is drooling or his nose in running. He seemed happy to be numb..he was the only one who saw the same Doctor H. that we saw at the University of Minnesota several years ago..the Dr. H. that told us “Anything we do to you would probably make you worse.” 

And so it goes.  We were happy that the weather cooperated to make it an easy traveling day.  After the meeting Far Guy dropped me off at Menards and waited for me whilst I ran in and purchased a gift that our local Menards was out of.  Five minutes..in and out which included waiting in line..speed shopping at it’s best. Twenty- three shopping days left..one package down and who knows how many to go:)

The Last Week

Far Guy had another injection last week.  The anesthetist takes a needle and injects a local anesthetic and a steroid into his face, just under his ear.  The injection is to calm the Trigeminal Nerve which in turn halts the false pain signals that the nerve transmits.

Here is my record of the injections so far.

May 14, 2012  Injection: the pain was held at bay for 7 days.

June 28, 2012  Injection: The pain became worse.

July 5, 2012  Injection:  Pain free for six weeks.

September 20, 2012 Injection:  So far so good. 

We are hopeful that this time it last for months…or years.  This is the only procedure that the Neurologist would advise for the Atypical Trigeminal Neuralgia that Far Guy has endured for almost four years.

The Gaillardia is still blooming and the big old bees are sluggish.  It has turned cold..and the Fireplace is on to warm us up in the morning.

We spent Sunday afternoon with good friends.  We had a lovely salad and steak lunch at their lake place…it was delicious! It was too cold and windy to go out on the lake..but the view was great! It was so good to get away and just download for a little while.

This is my (our) last week at the museum. It closes September 29. The building has no heat and this is Minnesota. Our program this week is “Our Take On Antiques Roadshow.” I have a volunteer recognition luncheon this week and two Boy Scout groups coming after school for tours. It will be a busy week.  Five days and counting:)

Far Side Whatnot

I finally finished that darn book.  The Third installment of the Hunger Games..The Mockingjay.  I liked the first two but the last one just dragged and dragged. I had to force myself to read it.  For me that is not fun reading.

Right now I am reading at lunch all about the U.S. – Dakota Conflict of 1862.  What a scary time to live in Minnesota.  One of my volunteers at the Museum shared that his Grandmother lived in the Morton Minnesota area and she left an oral history.  I am interested in reading it.

I have been approached by a Television Producer to arrange some interviews at the museum for a Public Television Show called Postcards.  I am not familiar with it.  However it sounds like good PR for the museum.

Work is going fine..busy, hot and a little dusty.  We had a work day yesterday.  We did not accomplish everything on my list..but we made some headway.  Those rooms in the basement must be back together really soon..before July 29.  How many days away is that..10 days..panic??  Not yet .. maybe in a few days.

Far Guy has had real good luck with the injection to take away the Trigeminal Neuralgia pain he has had for the last four years!  No pain…yet…fourteen days and counting! HOWEVER he is still suffering with the two dry sockets from when he had two troublesome teeth pulled sixteen days ago. He wonders if he will ever be “normal” or “pain free” ever again. I keep telling him to be patient. He is tired of being patient.

Chance is doing something strange since Miney and Little Elvis were here.  Whilst they visited..he may have missed a meal.  Far Guy would make three dishes of food and put them down..his finicky ways may have resulted in Miney eating his supper one night.  Ever since they were here he eats his food all gone like no ones business. There is no taking a bit and wandering off to play ball..and no sitting with him until he finishes encouraging him “Good Boy..Good Boy.”  I wonder if we should be worried as he has been finicky for most of his eight years..and all of a sudden he isn’t? 

Shell Lake and a Great Blue Heron July 2012

I am tired.  Working in the heat and sweating all day long must be exhausting because I have a nap after work most days.  Maybe I am getting am old:)

July something

I have been off a day all week.  One day I forgot to deactivate the alarm and the alarm went off when two ladies entered the building..it makes a terrible noise.  Then the phone call came from the Security Company “Yes I am fine..it was just me being forgetful.” 

One afternoon the phone rang and a lady asked what our hours were.. I told her..and she asked if we were open seven days a week..I said “Sure.”  Well some weeks it seems like seven days a week.. does that count?  Maybe the paint fumes are destroying what few good brain cells I have left.   The paint in the basement is really smelly:(

I guess Far Guy’s week has finally got to me..he had two teeth pulled then he had another injection in his face..Jen came and stayed overnight and took him to that appointment.  I am tired.  That is always my reaction to stress..sleep through it and when you wake up it might be all better.  So far so good with the last injection in his face..BUT he thinks he has a dry socket from where the other two teeth used to be.  I mixed him up a vile concoction of cloves and tea..he said it took away some of the pain.  It was the best I could do as it takes 15 days to make oil of cloves yourself.  Maybe tomorrow he can call his Dentist or we can go to the Health Food store and get some oil of cloves…it is the only thing that has ever taken his pain from a dry socket away before..yes he is prone to dry sockets.  I should have known that he would get a dry socket this time…if it ain’t one thing it is another.

Last night we went to the County Fair…we had our usual Pork Burger along with some cheese curds and homemade French fries..if you are going to indulge why not just go for it!   Far Guy was part of a woodcarving demonstration in one of the buildings.  I kept him company..I should have walked through all the exhibit buildings but I was just too tired it was a long hot week:(

Blue

There are Bluebirds flying around here and there.  I hope we have two sets..it is hard to tell.

I believe they are feeding young.

The little wild violets are blooming too.

I still have my cold, it is getting old.  Coughing at night until I get enough Nyquil in me that I can sleep through the coughing. ( The Nyquil induced dreams are amazingly colorful)  They say it is just a virus and it takes three weeks to get over..I have only had it for 13 days.

Chance was to the Vet for his annual shots and he is not feeling at all well.  His Blood Panel for Tick diseases came back negative..Yahoo! He has a hot spot over one of his hips..he is taking Rimadyl for a few days.  Last night we had thunder and lightening..he hates stormy weather and will try to refuse going outdoors alone.  He MUST have company.

Four days..that is all Far Guy got pain relief for.  His TN pain came back on Friday morning..he woke up with it.  We are both bummed out..he can have another injection in five weeks.

I will get better. Chance will too. Far Guy will just endure:(

Trigeminal Block

As many of you know.  Far Guy has  Atypical Trigeminal Neuralgia.  He has had it since December of 2007.  He lives with pain everyday.  He takes anti seizure medication to help control the pain, without the medication he would not be able to endure the pain. The medications must be taken throughout the day, if he forgets a dose or is ill and cannot keep his meds down he is in terrible pain. Pain medications are useless…nerve pain especially the pain from the Trigeminal Nerve seems to have a mind of it’s own.

In January I asked his Neurologist about new treatments?  Nothing was new. I asked “What do we do when the pain is so bad he cannot take it?” The reply “Call and I will get you set up with a nerve block.”

In March Far Guy had a real bad spell.  During his April appointment I asked the question “When he cannot take the pain anymore and I call you how long will it take to get him in for a Nerve Block?”  The answer was two days to two weeks.  I frowned and shook my head. Far Guy said  “Damn.”  The Doctor suggested that Far Guy try the nerve block now..NOW??  okay!!

Last Monday off we went.  We saw an Anesthesiologist, a Doctor who specializes in pain relief.  Far Guy had an injection of numbing medication and a steroid into his Trigeminal Nerve. (Just below his ear on the right side of his face.) He said “It was pure heaven not to have pain in my face.”

When I first saw him as they wheeled him out of the hospital into the waiting car his face and eye was droopy.  We knew it would be and that it would go away.  What we didn’t know is that he could not blink..so his eye got very dry and sore.  He held his eye closed most of the way home.  Some eye drops and some tape and he was a one eyed wonder. By the next morning his eye was almost normal and his face was back to normal.

The result..so far so good.  His pain is a ZERO!!!!  It may stay that way for six weeks to six months to six years.  (We will take the years please.)  Far Guy is scheduled for another injection in six weeks.

We asked the Anesthesiologist why we were not told about this treatment before?  He said It is becoming more commonly used for the treatment of Atypical Trigeminal Neuralgia. He has had good results with other patients.

One of the reasons we chose this procedure is this.  It does not damage the nerve.  There are other procedures out there, alcohol injections and gamma knives and one treatment that pulverizes the nerve.  ALL procedures that were we warned could make the nerve more angry and cause more pain in the long term.

In all our years of doctoring with TN and Neurologists and Neuro Surgeons this is the FIRST treatment that we have been advised to do. So we did it.

I was not optimistic.  I was expecting that it would work a few hours and then wear off.  After three days I am cautiously optimistic.  Far Guy is just happy to be pain free.  However I still make him wear his hood outside in the wind and I told him he should not eat anything crunchy.   Both the wind and crunchy food have made his pain worse in the past.

For now we will take it one pain free day at a time.  The Anesthesiologist said “You have had a raging forest fire in your face for over four years.  We will hope for good results in calming down that nerve.”

Me too..it has been a long road. If you are inclined to do so..please pray for complete healing and many pain free years.

Last night the boys were out on Bass Lake enjoying a nice evening on the water.  Chance tried out his new life jacket:)

Monday March 07, 2011

Far Guy is better today, he is upright and ate some breakfast.  His fever is gone.  He slept all night long and most of yesterday.  Chance was very worried about him.  I was worried too.   As most of you know, Far Guy has Trigeminal Neuralgia and has pain everyday.   When he is ill and has a temperature the Trigeminal Neuralgia is always worse.  Thankfully he was able to keep his medication down, it was touch and go there for awhile..I think the worst has passed.  Thank you everyone for your kind comments!

He gets a flu shot to avoid the flu..apparently it is NOT working.

“The lonely blue hockey ball”

It snowed off and on all day yesterday.   Chance and I went out and played ball many times.   Far Guy usually goes in and out all day long..playing ball, and hockey and chase me. They go for walks together and do guy stuff. They fill the bird feeders and sweep the walk.  They do exciting“stuff” out in the workshop/greenhouse. I play ball and then I do boring “stuff” like watching the birds..and taking photographs.

This is a Common Redpoll, the ones with the rose breasts are males.  The plainer ones are either females or juveniles.   A group of Redpolls is called a “gallup” I didn’t know that..I learn something new everyday!

Redpolls love Niger thistle seed..we have two feeders that we try to keep full of thistle seed and many of the birds end up on the ground eating below the feeders.

Someone asked if Chance chases the birds..no he watches them..and they watch him..they will fly if he runs through the bird feeding area.  Yesterday he chased a big fat grey squirrel out of the feeder area and up a tree.  Somehow I think the birds know that Chance is their friend:)

Chance: The Best Part of Christmas

It is I the handsome blogging Border Collie.  Far Side is not fit to talk to anyone today.  I betcha wanna know why?  Well..you see some nurse called her yesterday and CANCELLED her appointment to get her stitches out.  It seems the other nurses from same day surgery have no clue what their Doctors want. This clinic nurse who bossed Far Side around does and she is in charge of the appointments.  So the itchy bothersome stitches that are not supposed to get wet will stay in until Monday.  That was not a pretty phone call..afterward when Far Side started to bawl..Far Guy said “Sweetie, I can always remove those stitches if they get to be too much for you.”  I guess I could always chew them off …might be a bit messy..

On to the best part of Christmas. Food..oh yes a few leftovers..the BBQ Ribs that Far Side made were to roll over and die for..and Cheesy Bread..and corn that came out of the local fields last summer…and cookies..my sister made cookies.

Presents..Miney got a bag of Tennis Balls and shared her good fortune with me!

I got my very own Hockey Stick!! Now we have two..so we can really play hockey in the the driveway now. There was some confusion when it was purchased..apparently it goes by the height of the player..one of my girls said “It doesn’t matter it is for a dog.”  Now there will always be two sticks on hand..we play with a tennis ball..so we can play all year round.  I also got this..

a spidery looking ball that squeaks..I can’t take it outside because I might lose it in a snow bank.  This was a gift from Lisa J who lives in Washington State..she has Trigeminal Neuralgia just like Far Guy..and reads Far Sides blog everyday. She also sent a few ornaments …

  The most beautiful little Goldfinch..the State Bird of Washington.

Now get ready for a drop your socks off one of a kind ornament..Far Side thinks it is one of the most beautiful ornaments she has ever seen.( This was picked out especially for her by Lisa’s husband Doug..he  has really good taste:)

Far Side is reminded..that whatever silly discomfort that she has with her thumb is just a minor irritant…it will be all better in a few more days.. Trigeminal Neuralgia never goes away. Thank you Lisa and Doug J for thinking of us!  Presents, food and friends that understand make for a perfect Christmas for this handsome dog:)