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.

Almost Ready

The shopping what little there was is done.  Most of the people on our list are difficult to buy for and it is just simpler to write checks or get gift certificates.  I am so over shopping for Christmas Gifts. When I get a little older everyone will just get knit or crochet scarves…isn’t that a special thought!

I still need to bake some Pumpkin Bread…maybe today. I should do a double batch and deliver some to various neighbors.  I used to be better about all this “stuff” surrounding Christmas.

All the decorations are up…at least all that are going to see the light of day.

Yesterday we spent the day away at a checkup with Far Guy’s Neurologist.  All is well and he agreed with me that Far Guy is elderly getting a tad older.  It rained most of the day…Fargo ND has no snow.  Lakes in Minnesota are turning dark from the rain…not a good thing when it is warm enough to rain.  Our patio is like a skating rink.  Chance doesn’t like outside when there are icy puddles to walk through.

Twenty six wild turkeys a few days ago when the sun was shining.

Our menu is simpler this year for our dinner.  Ham, baked potatoes, lettuce salad, homemade mac and cheese for the boys…simple foods…Jen is making homemade crescent rolls…her boys will eat lots of those! 

It is at this time of year that I wish I had an extra fridge.  Oh well coolers have been used before!  Two people only need extra fridge space a couple of times a year!

I almost fell in the yard Sunday night…one of those oh crap what will I break this time…with visions of hospitals and surgery dancing in my head…I made a great save by running through half the yard…funny how when you begin to fall that momentum is carried on for what seems like forever.   I must have tripped over my big feet…funny I have had them forever you would think by now I would be used to them.  Anyways my right arm and shoulder and left ankle are sore….that ankle hasn’t seen that kind of action for years…and my arm and shoulder must have been doing the windmill ninety mph.  Uffda.

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:)

Happy 4th of July!

The 4th falling in the middle of the week makes for two weekends of celebrating.

Monday night the fireworks began..after the rain.  We can hear the pop pop of explosions down by the lake.

I put up a new flag.

The museum is closed for the 4th..it is just as well.  It was like a sauna yesterday.  Mark is painting the floors in the basement and the smell of paint thinner permeates the building.

Far Guy had two bothersome teeth pulled yesterday.  He is just a little miserable.  They were teeth that have been giving him fits, they are on the good side of his face.  If it isn’t one thing it is another. (The bad side of his face is the right side with the Trigeminal Neuralgia)  He had another special nerve block last week..it made the pain worse for a few days but since then has slowly become less painful. We are praying that the next injection will be the one that does the pain in..other patients are reporting good pain relief results..so we have a little bit of hope.

We have nothing planned for the 4th other than staying home and keeping cool:)

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:)

Frustrations of TN

As you all know Far Guy has Trigeminal Neuralgia, if you don’t then let me just say that is is the most horrid disorder that has a mind of it’s own.  Far Guys pain is always present..but then he gets a “spell”of excruciating pain.   Anything can trigger a spell..eating crunchy food, brushing his teeth, someone touching his face, a hug, the wind, and stress.  September has not been a good month, this is his third “spell”.. It began Saturday night when I was gone..the stress of me being gone could have triggered this “spell.”  He helped Jen cook supper for all the gals at the Scrapbook Retreat and was doing just fine until he returned home.  Of course he told no one, when I returned on Sunday he was in a full blown “spell.” He had already taken some of his pain pills, there is not much I can do except take him to the ER which he refused to do or wait to call his Doctors on Monday morning.

Our Neurologist. Dr. P  is on vacation..someone will return my call…we wait and wait.  Far Guy finally called his Primary Care Physician because he is sure his pain meds are too old to be effective. (I called his Pharmacist..they are still good.)  Later that Nurse calls with a new script..I ask if we can increase the dosage to get on top of the pain..she says “NO.”  I said OK tell the Doc that we will be at the ER then..she says well if it is that bad maybe he can give you something else…the something else was a pain patch.
 
Finally Dr P’s nurse calls me back to find out what the problem is, a different Neuro will return my call, a Dr. F.. I said “No thanks, he and I do not see eye to eye, and he was no help whatsoever a long time ago when we had him.”  ( I am still waiting for him to return a phone call I left for him two years ago.)  She is so sorry..well I am too..there is a Doctor C. that might be able to speak with me today.   An hour later he calls..he doesn’t quite understand the division of power between the Primary Care Physician and the Neuros.( The Primary Care Doctor handles everything but the TN..but he ends up prescribing the pain meds for it.)  He doesn’t like that the Primary Care Physician has ordered a Pain Patch..we can use it, but are to be careful of side effects. He tells us to increase the Tegretol dose.  It always takes a few days for the Tegretol to reach higher levels in your system.  Dr P. says that he always wants to be aware of the dosages and wants us only to increase them if he says it’s ok, he picked a fine week to go on vacation. 

Well the excruciating pain left at ten o’clock last night..it lasted 48 hours this time..was it the pain patch that worked or was the spell over?  Far Guy took the patch off in the middle of the night..it was supposed to remain in place for 72 hours..he said it was making him breathe funny, he was dizzy and sweating.

This morning I tried to make an Appointment before our November Appointment with Doctor P.   We are on a waiting list, because they are full.  So I will print out this blog and send it to Dr P..I am sure that he will squeeze us in sometime…or at least call me with further instructions.

I hate being a bitch, I really do, I realize that these Medical people have their jobs to do..but I have to be proactive about the care my husband receives.

I know that Lisa, Shirley and Grace all friends of Far Guys read this blog..they have TN too. Many people out there have TN..no research is being done, no one is doing Jack Squat to cure this disorder…sometimes it seems that no one cares either.  It is often called “The Suicide Disease” ..I wouldn’t have been able to understand how that was possible..but I have seen the pain and felt the helplessness that Far Guy has..only wanting to be free of the pain.

Far Guy just asked me what I was writing about..he also asked me if I have any pretty pictures today..nope.. none today.  I am just thankful that this “spell” is over..it was the worst one in a long time.  Today he will rest,  perhaps we will go for a drive later and look at some pretty leaves turning colors and then we will come home and have a nap:(

Somedays : (Far Guy TN Update)

For those of you new to my blog, Far Guy has Trigeminal Neuralgia Type II..atypical facial pain. He was diagnosed on Christmas Day 2007. From time to time I do updates on "Our Situation" .. our struggles..our sucesses (not many) and our failures. Presently he takes Tegretol and Neurontin to try to control the pain. The support group that we formed back in October has gone by the wayside..however we still keep in contact with some of the people in our area that also are afflicted with this horrible disorder.

Somedays even though Far Guy is better..he is worse. He does not want to talk to the Nurse Practitioner on the phone anymore. (Y'all know how I feel about talking on the phone.) He is totally capabable of talking to his own Nurse. A dedicated one at that, she called this morning..on a Sunday, her day off..because she cares and had not been able to return Far Guys call on Friday. They discussed his medications, she is just as confused as we are..why somedays are better and some days are not. Far Guy will work up a pain graph for his Nurse, once she has a look at it..she will increase his Neurontin. That is good news..I was afraid she might want to increase the Tegretol again..

Somedays I get SO frustrated with prescriptions.. numbers of pills needed..prescriptions changing. Being in the middle sucks. Far Guy is off in La La land with his prescriptions.. He told me "I have enough of that prescription to last at least another month." I started counting the pills.. eight days is not a month...at least the last time I was totally sane..a month was thirty days. We need a new prescription. Far Guy says "OK, guess I need a new one"..

I wrote a letter concerning medications and refills to his Primary Care Physician that is local.. I have found that Doctors may or may not return your phone calls..but they usually respond to letters. It is a paper trail, I think that leaving one scares the bejesus out of most Doctors. Anyway, I wrote it all out for Far Guy..told him to type it up or send it just the way it was..longhand and signed by me..

I have learned that Trigeminal Neuralgia is an extremely frustrating rare disorder. I believe we are on a better track after our visit to the U of MN..but Far Guy is getting a little/lot stubborn on me. I want him to be pain free, but he is willing to cope with the pain as long as it is not excruciating. We differ in our opinions, we discuss it..he is supposed to keep a pain diary..I sometimes fill in for him..It is a medication/pain log that sits near the bottles of pills in the kitchen. He has stopped keeping track, he is digging his heels in..If I ask him what his pain level is..he ignores me..or gives me a number that makes no sense what so ever..a million, five hundred thousand and thirteen.. all that tells me is that he does not want to share. The pain level is only 1 through 10.. I can usually tell what it is..if he is on the couch it is a seven, if he is in the bedroom it is above a seven. If he talks funny, biting down on his cheek while speaking..it is a five..if he is really cranky and pacing or just holding his head in his hands it is a ten. God, I hate tens. There is no rhyme or reason to the pain fluctuations, one day can be miserable as all get out of Far Guys way, the next the pain is tolerable. If only I could find a clue to the answer of why the pain fluctuates..the weather..the wind..chewing..it is like looking for a needle in a haystack.

Far Guy has a theory..shit happens..AND he thinks that the nerve only has enough energy to transmit the faulty signals for so long (the most painful times) then it burns itself out..and he can have a day or two with less pain while the nerve builds up the ability to transmit the faulty pain signals again.

He is much better than he was, he is not in a fog, but he is more moody..and cranky..uffda..somedays. The real pits is that everything revolves around pain, most things that we do are on the spur of the moment..if Far Guy feels good and is having a good day..we can get out and about. Bad days we just stay home..pain sometimes hold us hostage. Somedays he is a real trooper and says "I can feel just as rotten anywhere we go."

Somdays I wonder, why a good, kind person like Far Guy has to suffer so much. Somedays I wonder what I can do next. Somedays I would just like to give up, just like the Medical profession and research has..but I can't..cause Far Guy has it everyday...

Chance is very intune to Far Guys pain, he leads him to the couch, he comforts him by licking his hands. He does what he can in his own way to make things better. We TRY to laugh everyday, instead of cry, we try to make the best out of every day, somedays I just need to unload:)