Monday, February 29, 2016
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.
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.
Sunday, February 28, 2016
Don’t worry there is still snow at the snow stick.
I went to the wood shop for awhile. Still don’t have the Christmas Ornament for 2016 decision made, I will be working on a prototype this week. My first idea is just not workable.
We went for a ride before supper/ after my nap complete with dreams of playing cards with Barry from Oklahoma with photographs and arguing with him about a trip to the casino. You know how hard it is to shuffle photographs? But it was nice to have a lively discussion with Barry.( We always play cards with Barry and laugh and argue.)
Saturday, February 27, 2016
We decided to send Far Guy to surgery to have his port replaced. It will happen soon. He asked my opinion and I think that having a port keeps him out of the clinic and all the germy people…which in turn keeps him out of the hospital. I am not certain how many times he can have it replaced, I suggested they just put a zipper in his chest.
I am going to start logging our hours spent at the clinic/hospital. Last week one of the nurses was coughing…we are both a tad paranoid about that. I almost suggested that she should have stayed home…but I kept my big mouth shut.
The Income Taxes are done and were sent electronically, how about that …no last minute filing for us. Our accountant answered all our questions. Cross something off the list. Years ago after an audit, I made the decision to use an accountant and I am glad I did.
The local hospital doesn’t have a copy of our Advanced Care Directive but I will make a copy so they have it on file. The clinic has it and I hear that soon the hospital and the clinic’s computers will be able to talk to each other…sometimes change happens very slowly in the boonies.
Do you have an Advanced Care Directive? Do you have a Last Will and Testament and has it been recorded? We were talking with a young widow the other day and her husband had no will…so she was making her way through a ton of paperwork. Sometimes the decisions we don’t make can become real problems for those left behind.
Friday, February 26, 2016
We are discouraged but it could be worse…we were reminded of that as we spoke to a friend whose husband was buried ten days ago. Dead is worse that having some port problems.
Far Guys port is severely occluded, now even the fancy smancy too expensive pump will not push the liquid gold through his veins. We made a mad dash to the infusion center and from now on he will have a normal IV there until the doctors and Far Guy figure it out. It ties us down, but where do we go anyways? Not far.
Sometimes it is dangerous to leave the boonies.
Garden path at a display garden
Now…what do you think the proper response is when another car tries to force you off the road…go into the ditch, let them hit you from behind or tromp on it to get ahead of the bums? It has happened to me twice in the new passing lane on the way to town…being a nice old lady I go to the right lane in case someone wants to pass me…not any more ..no more Minnesota nice for me. I am taking that left lane if a vehicle is in sight. I refuse to yield to idiots that want to come along side me until MY lane ends. If I hadn’t been driving I would have taken a photo and reported them. ( One time I tromped on the gas and sped ahead, the other time I stomped on the brakes before my lane ended in the ditch…those rumble strips are awfully loud.)
When I called them some really nasty words Far Guy said “Calm down sweetheart.” I think they were probably on the phone and distracted…I would like to see mandatory jail sentences for phone use while driving. Throw a whole bunch of them in jail for six months and impound their vehicles and sell them at auction….that would stop a few distracted drivers and save a few lives….then again we as a society cannot even get the drunks off the road and out of vehicles… something is rotten in our traffic laws/court system. Discouraging isn’t it?
Thursday, February 25, 2016
We got some more snow it brought the snow stick up a bit.
Lovely isn’t it.
We have been busy and exhausted. Far Guy said yesterday “If I croak you will be so bored.” This was during our second trip to town for the day…usually we go to town once a week…not twice a day.
Men do read instructions, I have proof I caught him reading the instructions to the IV Pump. They sent a checklist so we should be able to figure it all out between the two of us. The bill said it would be $ 2,500 weekly …so I hope insurance covers it…yes you read that right a two and a five and two zeros with no decimal point…must be the new and improved affordable care act.
We had a thought about ten days ago, we were in the vehicle going for a ride, it was something we should have done before we left the house but we could do immediately when we got home. Well that was ten days ago and neither of us can remember exactly what it was. Old age is coming on fast.
We had a long time friend who we were both very fond of. He carried a little notebook and a pencil in his pocket of his True Value Hardware blue shirt. Now we understand.
The store in Osage was getting new shingles yesterday.
Yesterday there was a strange bright orb in the sky. I had to wear my sunglasses.
Wednesday, February 24, 2016
She shared those photos with her 94 year old Mother who was thrilled to see them.
“She says she remembers her grandmother Trace (Theresa Marie) who retired to a house across the street and up a hill from where my mother lived in Persia, Iowa. She owned a cow, and she liked to milk it. My mother said she would take a pail to grandma Trace's and she would fill the pail with fresh milk.”
That is Theresa Marie way on the right and Far Guys Great Grandmother Martha Jane sitting down on the right.
I see one of John’s Granddaughters in Park Rapids from time to time. The next time I see her I will have to tell her I heard from a cousin!
There were twelve children in this family, ten survived to adulthood.
Fred was a bachelor all his life. Amelia had eight children but they all remained single. Rosa had no children. So some of these family branches end with the people in the photo.
Thanks to Far Guy’s Grandma for being a saver of papers, I have been transcribing obituaries to Find A Grave one by one. I also added this photo.
I have many questions about this family, I know there is a book out there called Persia Centennial 1883 –1983 or Persia 100 years written by the people of Persia Iowa. Someday I hope to find a copy.
Two cousins, Eileen and Vivetta wrote a book about this family a number of years ago. It was called the Smart Aleck, we inherited a copy and are very thankful for it and the history it holds.
Right now I am just trying to get what I know down in an orderly fashion. I am trying not to go down “the rabbit trails” and get steered off course until I have more general information in place…birth, deaths, correct names…etc.
Tuesday, February 23, 2016
Hours just seem to slow to a crawl when you are in the hospital.
We spent most of the day there yesterday for a treatment of special DRANO and Far Guys port is still occluded…even the surgeon says it is a problem…and will possibly have to be replaced which means surgery.
For now we must learn the fine art of operating a IV Pump. If the “stuff” won’t go in well lets just give it some help and force it in. The surgeon says “WELL of course someone will come out and teach you how an IV pump works.”
NOT TRUE. The pump is coming but hopefully with instructions because the Medical Supply place will not sent out anyone because Far Guy is not homebound. If he were homebound they would send a nurse. I suppose I can search for a You Tube…
Far Guy is fit to be tied and I am so sleepy I am having a hard time staying awake.
One more hurdle to get over. I was never a good runner anyway…but hurdles…I would have killed myself with boob flap.
Monday, February 22, 2016
Have you ever put an entire brand new out of the plastic covered box puzzle together and had an extra piece?
We did at Christmas time. If it was part of someone elses puzzle I bet they were disappointed. It must have been a mix up in the puzzle factory.
Jen is pointing out the extra piece.
We finished it on Christmas Eve, the next morning when it was time to put it away…
Someone had to see if holding up a puzzle was possible…it was.
Sunday, February 21, 2016
We are having a thaw, what a mess. It just makes for icy areas that will eventually be covered by snow. Hip breakers.
We still have some snow. It was 36 F or 2 C eh! yesterday.
Lets call it five inches of snow at the snowstick.
I tried to work in the woodshop yesterday…tool troubles caused a hissy fit and a near melt down, I came in and collapsed on the couch. I am going to buy my very own Rotary Tool and smile when I hand back Far Guy his piece of
crap junk that doesn’t work for me. He has no problems with it…when he is in the woodshop I just ask for his assistance. I know I am mechanically challenged…but still…why do some things have to be so difficult.
This is my after Christmas look at the wreath by the door. Rummage sale stuff.
This is another rummage sale bargain. I need to touch up the paint on the flowers and fix that poor birds leg. I know it is kinda Christmasy but I still like it.
HP is sending a box so Far Guy can mail back his computer. He is using the laptop for the moment. He has it hooked up to his monitor and says it isn’t too bad. We usually only use the laptop when we are away from home.
Saturday, February 20, 2016
It was a week. One difficult situation after another.
I wish I was an Ostrich…don’t they bury their heads in the sand until everything is back to normal?
Far Guy said “Hey I am proud of you, you were stressed out but didn’t fall asleep on me.”
During the infusion this week I could push saline through his port but once the IV was hung (gravity flow) there wasn’t enough of a hole in the fibrous tissue that has grown over the end of the catheter in his vein to drip even one drop. The drop just hung there ready to drip but was held frozen in time. Once the protein is mixed it must be administered within three hours. His port was accessed twice last week and has been properly cared for. His body must be working overtime to cover up the foreign object that is in his body. We ended up at the infusion center where of course they cannot hang outside meds…but they could do an IV for him ( and I administered the protein) while they tried to access his port, he had a dose of Cathflow( he has standing orders for that) anyways that sat in the catheter about two hours with no results.
The Surgeon will see him Monday. We have a back up plan that may work. We will see. I guess I need to become IV Certified….not something I really want to do…but I can access a port now and I thought that would be a big deal too…and it isn’t when the port works correctly.
He has had this Bard Port-a-cath since June of 2015 seven months plus with no problems. Going to surgery every seven months seems a bit scary to me. Not only that but what are these clot busters doing to his body and or blood? He had clot busters on January 4 and again February 18…every six weeks? I am not a Doctor but there must be something wrong with this picture.
Friday his computer was corrupted by some super virus. HP is working on it, and luckily he had back upped his computer. This computer was brand new December 15 2015…so it is only two months old. Did you know that warranties are voided if you have a virus. Me neither. He runs Virus Software daily. Time will tell if it is repaired or not.
Friday, February 19, 2016
We took a short day trip on Wednesday. It was cloudy and gloomy.
Headed west and then south to a few antique shops that we had not been to since last spring.
We saw this cute haybale snowman. The snow is dirty and the fields are getting bare south of us.
I had good luck finding some interesting old photos at least they are interesting to me. One was kind of sad, it was a elderly woman’s trip to Hamilton Montana in 1969, she took photos of downtown, the railroad depot, the fairgrounds and views of streets and mountains. They are all color photos and not the kind I collect so I will do some research and find the local Historical Museum in that area and mail it off. I cannot believe that someone would sell it…but then I bought it so there you go… supply and demand.
Hamilton Montana 1969 Photos
The lady had quite a common name, I think I found her obituary but one never really knows for sure. As most little old ladies do it is marked with her name and the address of a Nursing Home. It was probably part of an Estate and has more value/meaning going to a museum than relatives.
I found many old photos (1880-1940) with names, not that I needed anymore but they were calling my name. I had several interesting conversations with people in the antique shops…and you know the saying that if you talk to some one long enough you will have a person in common…I met a fellow that was a classmate of a gal in Park Rapids (former church organist), he used to have a crush on her in high school back in Beardsley Minnesota…so much so that he named his daughter after her, not sure what his wife thought of that but she was busy shopping whilst he was talking to me.
Far Guy found this F-16A Block 15 Air Defence Jet Fighter it even has The Happy Hooligans banner on the tail. I think it needs some weapons …so some will be carved and painted.
On the way home it was late afternoon we found a place to walk Chance and stopped at a Mexican Resturaunt …there are two Mexican places in that little town, one is purple and one is rust colored we probably stopped at the wrong one, my other baby brother said they had the best Mexican food ever…people in the parking lot said the food was good…but we didn’t think so. What I ordered Far Guy couldn’t even eat…and he eats a lot of weird food. AND no Chance didn’t get any of it, hardly fit for a dog.
Thursday, February 18, 2016
The road up there was a little icy….but the sun was out and it felt so good to
They live further in the boonies than we do and the road gets narrower as you go. We met one snowmobiler and no vehicles.
We were a little late…took a wrong turn. Eventually we took the correct right turn. We were never lost LOST we knew where we were and how to get home.
Susan and Mike lived across the street from us when we lived in Regal Estates in Moorhead Minnesota in the mid 1970’s. We have kids the same age…she cried when she put Chadd on the bus for Kindergarten…I just waved happily goodbye to Trica. So we have been friends a good long time.
We always exchange Birthday and Christmas Gifts.
Guess what? Shiny Brites with Red Gingham Check design from the Poloron Corporation. They purchased the Shiny Brite Division from Eckmar about 1974 and went out of business in the early 1980's. A Poloron Trademark is on the box a red circle with a large P and the word Poloron.
Wonderful gift, wonderful lunch and wonderful friends.
For the record we are lunch and supper people. We have lunch in the afternoon and supper at 6 PM.
Wednesday, February 17, 2016
1 Friday Thresa and kids and Harrys and Anna and their kids went to Dakota I took cream and hauled rock got stuck and wet rained
2 Saturday Helped Robinsons fill silo
3 Sunday To Osage in PM took teachers books
4 Monday Helped Robinsons finish silo worked on barn foundation in PM Thresa and kids came home
I wish Grandpa was a man of more words. He is short and to the point.
I knew that this photo must have been taken about 1922 because of my Father in laws age being eight years old (Grandma marked it) and he was born in 1914, and Uncle Jimmy is a babe in arms and he was born in October of 1921. Finding the diary entry we can date the photo to September 1-4 1922.
Looks like a fine automobile to travel in, spare tires were carried right with you just in case and roads were not the super highways we know today. Note that everyone has a hat on all ready for the big trip to Dakota.
The women are sisters Anna or Annie as she was called and Tracie or Thresa or Theresa Far Guy’s paternal grandmother. Tracie is on the right with her three children, and Annie and her husband Harry and four children are on the left.
I wonder what the children thought of he trip? I wonder how far into Dakota they went? Fargo or further? Whom did they visit? Perhaps the diary and Grandpa will tell me in some later entries….I will keep my fingers crossed.
Update from Cousin Pat
Jack read your blog today and said Gram was on her way to see the
McKee's at their farm by Valley City.
Update from me:
The trip would have been 150 miles one way.
Yes they all traveled together, the kids all fit in here and there.
Tuesday, February 16, 2016
We went out to breakfast for Far Guy’s birthday then in the afternoon I cut my nap way short to make him a decent meal…pork chops and rice and then lemon pudding one of his favorites. Putting it in a custard cup is a whole lot better than making a whole pie. I am no good at crust anyways.
My meringue turned out better this time, last time it was flat as a pancake.
I am keeping busy with obituaries and photos added to Find A Grave. The old obituaries need to be transcribed and then entered. My note book is coming in handy. One day I left an obit edit for a gal, turns out she is a cousin of Far Guys and she maintains many of the graves for Far Guy’s Aleck side of the family. Fun stuff.
Monday, February 15, 2016
Sunday, February 14, 2016
They had lunch. Far Side asked Savannah what she wanted for lunch…”You know those crescent roll pepperoni cheese things we made one Christmas Eve?” That was simple enough along with a salad and some early birthday cake for Far Guy(a brownie with ice cream topped with hot fudge).
Those girls can giggle, I settled down after lunch for a long nap lulled to sleep by the sounds of their giggling. Several card games of “Golf” were played in between lunch and dessert.
Then they had to leave, I was sad to see them go. I would have gone with them but I am needed here…plus they both have dogs of their very own.
I kissed them goodbye.
Happy Valentines Day!
Saturday, February 13, 2016
* WIND CHILL READINGS... AS LOW AS 35 BELOW.
A WIND CHILL ADVISORY MEANS THAT VERY COLD AIR AND STRONG WINDS WILL COMBINE TO GENERATE LOW WIND CHILLS. THIS WILL RESULT IN FROST BITE AND LEAD TO HYPOTHERMIA IF PRECAUTIONS ARE NOT TAKEN. IF YOU MUST VENTURE OUTDOORS... MAKE SURE YOU WEAR A HAT AND GLOVES.
I read this after I walked the dog in my shirt sleeves and my crocs…it was a tad chilly out there.
Seems another storm is headed this way on Sunday. Snow and wind. More fun.
We ran some errands yesterday so we are good to go. When we get a clear day the temperatures drop. It was nice to see the sun but it nearly blinded me!
We have been watching the progress of the renovation of the Grocery Store in Osage. The guy that bought the store has been working in all kinds of weather, the rumor is that it will be a Grocery/Hardware Store and will open May 1st! It will be nice to have the store open again.
They took the whole roof off and are rebuilding. Looks like the new entrance might be on this side…just have to wait and see.
It was another sad week in local news. Our sympathy to all those who have lost a loved one this week.
A local fellow was killed in a snowmobile accident one night. I went to school with his sister and I knew his wife…they have a 13 year old at home…he was young…57. His Mom still lives on the old farm place…she must be incredibly sad.
This was also a sad week for our friends Gravy and Dawn. Gravy’s sister had Lewy Bodies Dementia. It is a progressive dementia often misdiagnosed. Lewy bodies are protein deposits that develop in the nerve cells in your brain. It is a horrid disease for which there is no cure… they think that Robin Williams may have had Lewy Bodies Dementia. Gravy’s sister was 61 years old.
A 33 year old Police Officer was shot and killed by a nut case in Fargo North Dakota. Fargo has not had an Police Officer shooting death since the 1880’s.
So we should all make the best of everyday that we are upright and feeding ourselves.
Friday, February 12, 2016
Right now we have nine inches of snow at the snow stick. A winner will be declared when the stick is surrounded by water or when the snow is all gone. Here is some snow stick history.
2011 April 8
2012 March 13
2013 April 30
2104 April 10
2015 March 11
Right now we have nine inches of snow at the snow stick.
I took this photo last night just before dark through the window…too lazy to go back outside…it was cold out there.
Please enter a date and either morning or afternoon with your guess.
So what about a prize? It might be a carving! Maybe…it is a good possibility!
I have been working on some little carvings. These still need window and door holes but it has been too cold to go to the wood shop to finish them. I use power tools that raise dust. They also need to be painted…but they will be finished sometime this spring…probably about the same time as the snow melts.
Please enter by leaving a comment with your guess, for you shy ones you know the email. Guessing will remain open until Sunday night Feb 14 at 9PM. Please check back to make sure I got your guess correct!
Date and AM or PM Happy guessing!
Auntie Pam Feb 29 PM
Linda Reeder March 4 PM
Sam I Am March 10 PM
Elaine S March 12 PM
Gail March 13 3 PM
diane March 15 AM
linda M March 15 PM
the crazysheeplady March 16 PM
Linda in Alberta March 18 PM
Shirley March 20 PM
The Furry Gnome March 21 AM
Sonja March 21 PM
LD March 23 PM
Cynthia March 25 PM
Gravy March 26 AM
Intense Guy March 26 PM
Jan March 27 AM
Karen March 27 PM
Rita March 28 PM
Kathy March 29 PM
Pee Jay March 30 AM
Wendy Danielson March 30 PM
Red March 30 PM
Country Gal March 30 PM
Terry and Linda April 1 AM or PM??
DJan April 1 PM
Mildred April 2 AM
Anonymous ?? April 2 PM
Anonymous (Sharon) April 4 PM
lisa April 5 PM
carrington April 9 PM
MJM April 15 AM
Molly M April 21 AM