Friday, September 25, 2015

Kate's Letter to Family/Friends about Cushings


(Piggy&Dirt star: Tabby Cat. They are bringing out their Halloween Stars and it's looking spooky!)

Hi, Readers.

 I had been bracing myself for a week before D - DAY- * Drop in Prednisone Day. I was scared.


(Piggy & Dirty on etsy can make this Scary Skull for ya. No, thanks for me, Kurt.)
 
It came. 
I have a disease that required I be on it and then I was on it so long or something clicked and I got Cushing's Syndrome.  : (  So now I am fighting to get off the prednisone as fast and safely as possible. It is not fun. There have been some set backs. The body hasn't got a way to handle the stress since it is synthetically made. So some things like a car accident, for instance, can cause a lot of problems. And set back the tapering process, which can make you deal with Cushings sydrome for a longer time.

 Which is scary. Look how cute Becky over at Piggy & Dirt, their etsy. com store, can make scary wrapping of a gift! They are just too cool.
It isn't as ugly as it's going to be in a few days so I will brace myself for that for good measure.
 
******************************

The day my body figured out the drop was for real, happened. And it is ugly. Glad I measured.
*******************************
I re-read some info. on Cushings after getting pumped up about football games, people's athletic goals, so on an such.

Anyway, the support group over at the Cushing web site helped me. Kate puts it best, so here is her much needed letter tonight!


(In Memory of Kate Myers- photo courtesy of cushingsbios.com)

Dear friends and family:

I am writing this letter to share with you some basic facts about Cushing’s Disease/Syndrome and the recovery process so that you will have sufficient information to form realistic expectations about me and my ability to engage in certain activities in light of this disease and its aftermath.

As you know, Cushing’s is a rarely diagnosed endocrine disorder characterized by hypercortisolism.

Cortisol is a hormone produced by the adrenal glands and is vital to regulate the body’s cardivoascular functions and metabolism, to boost the immune system and to fight inflammation.

But its most important job is to help the body to respond to stress.
 
The adrenal glands release cortisol in response to stress, so atheletes, women experiencing pregnancy, and those suffering from alcoholism, panic disorders and malnutrition naturally have higher-than-normal levels of cortisol.

People with Cushing’s Syndrome live life with too much cortisol for their bodies as a result of a hormone-secreting tumor. Mine is located in the pituitary gland. Endogenous hypercortisolism leaves the body in a constant state of “fight or flight,” which ravages the body and tears down the body’s major systems including cardivascular, musculo-skeletal, endocrine, etc.

Symptoms vary, but the most common symptoms include rapid, unexplained weight gain in the upper body with increased fat around the neck and face (“moon facies”);



(I am in the middle and was on my way to not fitting those shorts. Which, at the time, were my "big" shorts and I thought I was "big" at the size 7 or 8 because I was used to being thin due to Crohns. J. and I are crossing the street in Cody, Wyoming. I could barely walk due to some Crohns problemos. But you can't tell.....)


 buffalo hump; facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoperosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, infertility, hirsutism, male-patterned balding and steroid-induced acne.
Cushing's Symptoms    Attached, you will find a sketch of a typical Cushing’s patient. As you can see, the effects of the disease on the body are dramatic.
Worse, the psychological and emotional effects of having a chronic, debilitating and disfiguring disease range from distressing to demoralizing.
Imagine that, in the space of a year, you became unrecognizable to those around you and to yourself. You look in the mirror, but the person staring back atyou is a stranger. You endure the stares and looks of pity from those who knew you before Cushing’s, fully aware that they believe you have “let yourself go” or otherwise allowed this to happen to your body. Nothing you can say or do will persuade them otherwise, so at some point, you stop trying and resolve to live your life in a stranger’s body.
You feel increasingly sick, but when you explain your array of symptoms to your doctor, you are dismissed as a depressed hypochondriac who needs to diet and exercise more. Worse, your family members think the same thing — and are often quick to tell you how you need to “change your lifestyle” to overcome the effects of what you eventually will discover, once properly diagnosed, is a serious and rare disease.
If only it were so simple! No one would choose to have Cushing’s. Those of us who have it would not wish it even on our worst enemy.
Most people with Cushing’s long for the ability to do simple things, like walk a flight of stairs without having to sit for half an hour afterwards, or vacuum the house or even unload a dishwasher.
One of the worst parts about this disease is the crushing fatigue and muscle wasting/weakness, which accompanies hypercortisolism.

Not only do we become socially isolated because of the virilzing effects of an endocrine tumor, which drastically alters our appearance, but we no longer feel like ourselves with regard to energy. We would love to take a long bike ride, run three miles or go shopping like we used to — activities, which we took for granted before the disease struck. Those activities are sadly impossible at times for those with advanced stages of the disease.

Sometimes, as with any serious illness, performing even basic tasks of daily care such as showering and dressing can exhaust the limited reserves of energy available to a Cushing’s patient.
How do we explain to you what it’s like to watch our lives slip away? What response is sufficient to express the grief and frustration over losing so much of ourselves? It is often difficult to find the strength to explain how your well-meaning words of prompting and encouragement (to diet or exercise) only serve to leave us more isolated and feeling alone.

Though we wouldn’t want it, we wish our disease were as well-understood as cancer so that those who love us would have a frame of reference for what we go through. With Cushing’s, there is such limited public awareness that we are left to describe the effects of the disease from a void, often with limited understanding from those who love us most, which is disheartening.

The most frustrating misconception about this disease is that we somehow are “doing this to ourselves,” or delaying recovery because we need to continue steroid replacement or lack the energy to exercise often, which is sadly false. Trust me that we would love to have that much control over such a terrible disease.

Fortunately, there is a good likelihood of remission from Cushing’s in the hands of a skilled pituitary surgeon. Unfortunately, the long-term remission rate is only 56%, meaning that 44% of people with Cushing’s will require a second (sometimes third) pituitary surgery, radiation or bilateraly adrenalectomy to resolve the hypercortisolism. Without successful treatment, Cushing’s leads to death. Even with successful treatment, I will have to be monitored for possible recurrence for the rest of my life.

After surgery or other treatment, the recovery period can last months or even years. Because the tumor takes over control of the body’s production of cortisol, the adrenal glands, which had lain dormant prior to surgery, require time to start functioning properly again.

Until this happens, we must take synthetic steroids or else risk adrenal insufficiency or adrenal crisis, which can be quickly life-threatening. Careful monitoring of our cortisol levels is critical during the weaning period. It is a rare but sad fact that some people’s adrenal glands never return to normal, and those people must continue to take hydrocortisone or prednisone — sometimes for life — simply in order for the body to perform correctly its basic systemic functions.

The physical recovery from surgery can be quick, but the withdrawal from hydrocortisone can be a lengthy and extremely painful process. As I described above, Cushing’s causes a tearing-down of muscles and bone. While there is an over-abundance of cortisol in our bodies (as a result of the tumor), we often can’t feel the effects of the muscle-wasting and bone deterioration because of the anti-inflammatory action of cortisol. Upon weaning, however, these become painfully (literally!) evident.

The physical pain experienced while weaning from cortisol has been described as worse than weaning from heroin. When cortisol levels are low, one experiences the symptoms akin to a really bad flu, including severe fatigue (”like a wet cement blanket laid on top of me”); weakness and exhaustion; nausea; headache; vomiting; mental confusion. It is imperative for people who are on replacement steroids after Cushing’s surgery to carry extra Cortef (or injectable Solu-Cortef) with them at all times in addition to wearing a medic alert bracelet so that medical professionals will be alerted to the possibility of adrenal insufficiency in the event of an adrenal crisis.

People who have struggled with Cushing’s Syndrome all hope to return to “normal” at some point. Though none of us want to have Cushing’s, it is often a relief finally to have a correct diagnosis and treatment plan. For many, there is a gradual resolution of many Cushing’s symptoms within a few years of surgery or other successful treatment, and a good quality of life can be achieved.

But regrettably, this is not possible in every case. Depending on the severity of the disease and the length of time before diagnosis and treatment, the prognosis can be poor and lead to shortened life expectancy and diminished quality of life. This is not a choice or something we can control, but it is the reality for some people who have suffered the consequences of long-term hypercortisolism.

The best support you can give someone who is suffering from Cushing’s or its aftermath is to BELIEVE them and to understand that they are not manufacturing their illness or prolonging recovery. Ask them what they are able (and not able) to do, and then be prepared to help them in ways that matter — whether that be to bring them a meal or help them to run errands, pick up prescriptions from the pharmacy or clean their house.

Because it’s these little everyday tasks, which can fall by the wayside when someone has (or has had) Cushing’s, and these are the things we miss the most: doing for ourselves.

Ask us questions about the disease, and then actively listen to what we say. We know you don’t know much about Cushing’s — even our doctors sometimes lack information about this rare disease. But know we appreciate the interest and will tell you everything you want to know, because those of us who have it necessarily become experts in it just in order to survive.

Thank you for caring about me and for hearing what I am saying in this letter. I know you love me and are concerned about me, and I appreciate that so much. Thank you also for taking the time to read this letter. I look forward to discussing further any questions you might have.
In the meantime, I am attaching a brief article written by a woman who recently was diagnosed with Cushing’s. I hope hearing another person’s experiences will help you to understand what I’m going through so that when we talk, we will be coming from a similar starting place.

Endocrinologists (doctors who specialize in Cushing's Syndrome and its related issues) realize the medical aspect and know the damaging effects that Cushing's has on the body. Family and friends see their Cushie suffering and know they are hurting physically and often times mentally and emotionally. However, understanding the debilitation of Cushing's and how it can affect every aspect of a person's life can only be truly realized by those who have experienced the syndrome.

Cushings Help Organization, Inc., a non-profit family of websites maintained by MaryO, a pituitary Cushing's survivor, provides this letter for patients to provide to their family and friends in hopes of providing a better understanding Cushing's and it's many aspects.

We're sorry to hear that your family member or friend has Cushing's Syndrome or suspected Cushing's. A person may feel better at times then at other times. It's common for a Cushing's patient to have burst of energy and then all of a sudden they become lethargic and don't feel like moving a muscle. There are many symptoms that are associated with Cushing's. They include weight gain, fatigue, muscle weakness, shortness of breath, feeling achy all over, headaches, blurred vision, mood swings, high blood pressure, stretch marks (straie), buffalo hump, diabetes, edema and the list goes on. Hormones affect every area of the body.

It is important to note that not all patients have every symptom. Even some hallmark symptoms, such as straie or the "buffalo hump", may not be noticable on every patient. Not everyone who has Cushing's will experience the same symptoms, treatment, or recovery. Because not all "Cushies" have these symptoms, it makes diagnosis even more difficult.

Cushing's can cause the physical appearance change due to weight gain, hair loss, rosacea, acne, etc. This can be very disturbing when looking in the mirror. Changes in appearance can often cause the Cushing's patient to withdraw from family and friends making it a very lonely illness. Patients often feel alone or withdrawn because few others understand.

Cushing's can affect affect anyone of any age although it is more commen in women.
Cushing's patients need to be able to take one day at time and learn to listen to their bodies. There will most likely be times when naps are needed during the day and often times may not be able to sleep at night due to surges of cortisol. Your Cushie doesn't expect you to understand Cushing's Syndrome completely. They do need you to be there for them and try to understand to the best of your ability what they feel and not give up on them.

Often a Cushing's patient may be moody and say things that they don't mean. If this should happen with your Cushie try not to take it personally and know that it's most likely caused by the elevated cortisol and disturbances in other hormone levels caused by the Cushing's and not from the heart or true feelings of your Cushie.

It can be very depressing and frustrating having so many limitations and experience things in life being taken from you. Cushing's patients are sick, not lazy, not hypochondriacs or even the newer term "Cyberchondriacs". If a Cushing's patient says they don't feel like doing something or they express how bad they feel let them know that you believe them. One of the most frustrating things to someone who is sick is to have those you love not believe you or support you. Telling a Cushie to think positive thoughts will not make him/her well and will just be aggravating.

Testing procedures can be lengthy and this can become frustrating for the patient and family. Often, it takes a while for results to come back and this can be stressful. Don't look too far ahead just take one day at a time and deal with the situation that is at hand at the present time.

After a diagnosis is made then it's time for treatment. Surgery is usually the best treatment option for Cushing's that is caused by tumors. Don't be surprised if the surgeon's facility wants to run even more tests or redo some of those that have already been done. Your Cushie may have to travel a ways to find a surgeon who is trained in these delicate surgeries and who has performed many of them.
Once the diagnosis has been made and treatment has finished then it's time for the recovery process. Not all patients who have surgery are cured and they have to make a choice along with the advice of their doctor as to what their next treatment option will be.

The recovery from the surgery itself is similar to any other surgery and will take a while to recover. The recovery process obtained from getting a cure from Cushing's is quiet different from other surgeries. A Cushing's patients body has been exposed to excess cortisol, usually for quite a long time, and has become accustomed it. When the tumor is removed that has been responsible for the excessive cortisol and the body is no longer getting it this causes the body to have withdrawal symptoms. Withdrawal can be very hard causing an array of symptoms muscle aches, weakness, bone and joint pain, emotional disturbances etc.

Thank you for reading this and we hope it will help you to understand a little more about Cushing's and the dibilating affect it can have on a person. Thank you for being there and supporting your Cushie during this time in their life. We realize that when a family member has Cushing's it not only affects the individual but other family members and those around them as well. Showing your love and support will encourage a speedy recovery for your Cushie.

Wednesday, September 16, 2015

I miss Salsa & Papa Tom's Pizza


(the actor for Louie Zamperini- someone who really did go without food for a long time after his plane went down in WWII)

Readers,

Have you ever been on a raft in the middle of the ocean without food?
 
Me neither.
 
Have you gone hiking for a week without food that was so good and then you just sit and talk about what you will eat when you get home from hiking with your siblings or friends?
 
Me, too.
 
I am making that mental food list right now.
 
Why?
 
THE ESOPHAGUS
 
 I "eat" some chicken broth for lunch and sucked on some wafers. It makes me feel horrible for taking for granted all the times I went out to eat with friends and there was the basket of tortillas and you dipped them into the salsa like you didn't have a meal coming out in ten minutes. 
 I didn't appreciate it as much as I could have.
 
So SALSA. I miss it. Fresh. On tacos. Whatever.
 
Everything sounds good to eat after you haven't had it, shouldn't have it, and so on. If you have Crohns Disease you are sometimes limited. Earlier in my Crohns career, people would ask:
 
 "Do you have to avoid certain foods?"
 
I chuckled.
 
"Yeh, I feel the best when I don't eat! Or drink!" When I was out of a" flare", I could eat what I wanted. Nothing "triggered" a flare. Then my Crohns progressed and I was on the best of the best cause I went to the UofU and before I knew, it had been two decades on and off a steroid that was given for inflammation.
 
I really needed it. It was that or Crohns eating you away and that helped minus all the side effects it was a hair off of being worse than Crohns itself.
 
Then my Crohns got old and my body wanted more things wrong with it which leads us to now;
Making the 'Miss You' List.
 
Spicy food. Oh- and swallowing in general. That always helps whether a sharp shard of tortilla laden with salsa is on it, or not.
 
Papa Tom's Pizza- their sauce isn't like it was a couple decades ago when Tom was still there. However, I have to leave the table if everyone is eating it.
 
Tomato sauce on any pizza.
Or on spaghetti.
 
Since I am spent, I will just throw out there all food that doesn't have to be pureed in a blender and is bland.
 
Oh, and out of all things guess what was the WORST when I did my tube down the throat test?
Chocolate.
 
Any of these foods, once eaten, can cut a craving when it hits the place wanting to tie off in my esophagus. but I miss them.
I need to reheat my broth but will leave this cool picture of Louie in the movie Unbroken.
 
Unbroken-New-Wallpaper-7766
 
 

Monday, September 14, 2015

I Miss Our Football Life- BYU vs. BSU





Hi, Readers.


Just laying here enduring the backfire of some injections in my back. They worked for a bit but not today. And the grieving the days when my son and I were eat, slept, and lived football.

It's fall now in I. F. The smells of the cold front coming in, it rained. The way the sun glows. I haven't said it much because I have wanted to support J.'s decisions and I have been too sick to make it to games.

But I miss it. I miss seeing him pull his helmet off his head and his sweaty hair matted down on his noggin'




with his little cousins running up to him once they could recognize which blue helmeted knight was him.
 

 
I will never forget when he came out of nowhere and leapt in the air, taking down a guy and both of them sliding within' inches of my feet. I recall me throwing him the ball


(RB getting the ball)



 over and over as he wore a Skyline helmet- loaned to him during Halloween. Play after play.

My body was pushing and finally the bottom fell out. Our lives detoured- he took up other sports.
Then today I had to be reminded of the fact we haven't even watched football together except the two times we went into Carl's Jr. so he could have a burger.

I love the game. I loved watching him. I still love watching a game with him.


(Padre took this of Eli Ames in one of J's games.)

In real time or on the big screen. Most kids go through football all the way - through HS. He played hard. He learned the discipline.

For us- J. and I it has possibly been cut short. And that transition was hard. Heck, yeh, I was relieved about some aspects. I couldn't be there on the sidelines- as involved as much as I was back then.


The pain and discomfort was becoming unbearable and the teaser my P.A. had given me when he asked if J. and I took in the game helped me reach for the computer.... on it held emotions of memories that we made on a day to day basis. We lived for it. The ache for that for what he does now





flooded my whole body.

My P.A. strategically told me the summary version of the game as I lay face down on the table waiting for the sting of a needle( due to alcohol wipes not drying all the way) going into balled up, radiated muscle pain from the esophagus closures. 

Complicated, I know. So after eating good healthy food, and laying down or resting as much as I could after a tough day
(even in P.T. they had me doing more stuff! It doesn't let up. And I can't let up. Maybe that's just it- it is my turn to train, put in practice to get stronger. ?)

I took in the 15 seconds of BYU's freshman come in and throw a hail mary that was caught in the end zone and then some dude name, Kai, had an interception for BYU and runs it clear into BSU's end zone.

I lost at least 5 mg of prednisone as I replayed it and then had my veteran player come in and watch it with me. Even J was gripping the lap top as the unbelievable game unfolded before his eyes.
What I would give to be at a game like that and be able to rise up and shout and cheer like I used to.

After watching a few times he jumped up from my bed and said in passing:

"That's what I wanted. I wanted to be Running Back. That would be hard now." he chuckled and patted his gut.

The guilt lessened inside my heart because it seemed that if I couldn't be there to watch those tackles, to understand the intensity of every play he made on the field, and to cheer him on (until the last year and then he wanted me to be more chill and do the thumbs up or just the hands in the air.)- Readers, it was some of the best moments of my life.

Not that what he chooses to do now


(Some dirt bike competition in Transylvania)

doesn't give me enjoyment and I love to see the skill set he has with his new sports- it's just something I can't explain.... maybe it's in my ability to be there and take it in like others. To have the strength to even get excited or bummed about it and not have it affect my cortisol levels due to long term prednisone in my body.......
(flying has always been what he's wanted to do. I know he will.)

Now I can sit in a chair and read a magazine or just look at the mountain that my boy skis down and tells me frequently he can't get enough of it!  I can't be there to watch him burst through fresh powder. Or make fresh lines early in the morning after a snow fall.

Kenny Chesney sings the song: The Boys of Fall- there will always be those boys; the ones that will don the hometown uniform for us to cheer them on to win to acknowledge all the sweat and rucking it that they paid to be ready for The Game.

 When I get better, I am gonna be in that stadium (I will start out slow with a TV version)- cheering on whoever happens to be wearing that Skyline helmet just because the thrill of watching "The Game."
The smell of their stinky locker room will flood my senses as the cool air, painted end zones, and "rabid fans", as J. calls them, go crazy while the parents sit in the chilled out section.

( our hearts are beating just as fast while we hold our breath just like we did when we were young)
And what I do now when J. grabs one of his helmets to go on a different adventure.
I hope that my fight helps give him the lift to get off the ground and take flight.



Saturday, September 12, 2015

Crow Hoppin' Belgiun Horses for the Fair




 (photo by peachesrox)
 
Morning, Readers.
 

It's that typical time of night that my prednisone laden body wakes up and either I try to keep my eyes closed or I "study."

Lately I have had to lean on my endocrinologist for lab work and what to do next. Now that I am below ten mgs of the pred. I am closer to what the body makes by itself and closer to a recovering set of adrenal glands. That appear to be not so happy.

(Like a bull at the Idaho State Fair. Picture courtesy of the site.)

Good news is that I have had relief again from the esophagus that wants to close off and I have stayed on top of drinking that chalky stuff regularly.

*If you have Crohns, Cushings, or are in prednisone withdrawal, I will put the symptoms I am having below the post that I wrote this morning.

Today's topic is how fascinating I found a particular breed of horses: The Draft Horse

(greengardensfarm.com)
 
Just one of the random things to come along as I endure the effects of tapering off prednisone.
Which I have decided has officially and totally changed my life.
 
Okay, so back to the Draft Horses that caught my interest
.

My sister returned home from a trip the other day to some visitors in her corral; Belgiun Horses who had just endured a 14 hour stretch of standing in the same place from North Dakota to Iona, Idaho.
 
The draft horses are here to compete in the Idaho State Fair! 

 
(I write that as if I would be in attendance but you won't find me there this year. Possibly the next three. Picture courtesy of Eastern Idaho State Fair )
 
The first thing the huge horses wanted to do was play around in the dirt like my nephews. They rolled around and put their feet in the air like they were riding a bike upside down. Then they would do the cutest looking little stretch and then hop. It actually had a name: Crow hopping.
 
A horse loves freedom, and the weariest old work horse will roll on the ground or break into a lumbering gallop when he is turned loose into the open.
~GERALD RAFERTY

(or Zebra. Shout out to those with Cushings as this is our mascot. Hooves beating on the ground, and obvious rolling around on the ground we would assume horse. But NO! A Zebra. )


(chickensmoothie.com- this one is just hilarious)

 
The sun was set in the sky just right to glisten a golden glow off the dirt kicked up and the horses inside it.
 
In a word: Stunning.

(horsenation.com Clydsdale cousin)


And STRONG.
 
It wasn't until actually the next day that mom asked if I wanted to accompany her and my nephew with them to see the horses in person.
 
We took the short jaunt out to the country where the fences are "broken." (my son, J. ,used to say that was one of the reasons he loved it out in the country; broken fences.) There by the corral were some lawn chairs set up for us to sit down.
 
After tip toeing through the "horse tulips" we sat down a few feet from the animals that were about to be tied up to a truck and then left to do what they were meant to do- work. Or pull heavy trucks to get ready for Fairs.

(courtesy of Eastern Idaho State Fairs.) 
 
The horses went in a circle, starting out with just a bit of weight and then the driver put the brakes on and that is when these horses ability to pull was put to the test. Their flanks suddenly burst out some serious muscles and their front hooves dug into the dirt.
 
Me and the "regular horses" of my sister's gaped at the show in front of us. We had front row seats to these amazing animals.

(cs.thehorse.com)
Next to me was Grandpa. Padre had picked him up and brought him over to watch the event. It led to a story about a man from Preston, Idaho- whose pair of Belgiuns won every year. But they didn't "train" for it in the way these ones do for State Fairs, instead they truly worked on a farm.
 
They did enter the fair each year and won consistently.
 
I didn't stay long enough to interview the owner of the horses or Grandpa about the animals that were so strikingly strong and beautiful. Everything about them was grand and ornate. The leather reins and bit? were black with golden studs against the light brown colored hair of the Belgiuns.
 
 
So that is the news for today. And a diagram to help those who have no idea about horses even though they are related to those who do!

Have fun eating fair food like cotton candy, Idaho Spuds swimming in butter, and scones the size of a Large Pizza.

I wonder if they have scooters like those at the library.....

 



*I am still at 8 mgs and have been there for more than the anticipated "3 weeks" due to lab work and the levels they found. I am so glad to be in good hands with my tapering right now. In the past I never had this kind of help.
 
So you can imagine my gratitude for a doctor's office that is readily available- from when I call and get right through to a nurse who promptly returns a call, to having an in house lab that can do everything that I was sent all over the city for from lab work to IVs.
 
It makes coming off prednisone safer. Now that I have been on it this long (four years) I have learned some big lessons. So- sniff- I feel very weary. The esophageal stricture was dilated again a week ago and that was mixed in with getting J. ready for Jr. High. I had almost two days of being awake which were not helped by racing thoughts, anxiety,  and then crashed.
 
I am dealing with weak wasting skeletal muscles, tendons feel shredded, stiffness in my joints. Especially in the a.m. I tire super fast. During family get to gethers, I had to take them in doses.
Interacting and visiting then laying down to rest.
Pushing myself in the area of interacting is helpful even if there is set backs because it gives me that time to talk with others.
Like right now- I need a break from blogging. Which means I will go swallow a nexium generic and then the chalky stuff before I eat.
 

 my bedroom shelf. background picture is of the woman from the New Testament with the issue of blood drawn by Christensen. A frame and water color painting all from J and I's Easter weekend in Driggs, Idaho. The artist is a holocaust survivor. Each came to $1.00)

Tuesday, September 8, 2015

8 Sentences!!!!






Not Jail Time, Reader. A summary. For school.

J: "Mom, I can't go to an appt.- I HAVE to go to school. I CAN'T MISS.

ME: "Okay. What class is at blah, blah, blah, time?"
J: Such and Such. We watch a movie and have to write 8 sentences in 3 MINUTES!

ME: That sound like the perfect thing to make up or arrange to make up!

J: "RE-schedule it! I can't miss!"

ME: " OH, GEEZ."

7th grade is rough, Readers. I forgot. However he boasts being able to open his locker in 3 seconds, is able to eat his cold lunch in around the same amount of time and then play football outside with the guys.

??? Wha?? I never had that kind of time. But I had to eat hot lunch. And I didn't play football.

Tuesday, September 1, 2015

Back to School Eve and Esophagus re-opened



Well Readers, A Sevie is tucked into bed and I am out here basking in the glow of the

Back to School Tree.
 
I think I might have shown it to you already, but Oh well. It's what I am looking at right now while butterflies dance in my stomach for J. tomorrow. Or today. It's in the a.m. now.

I love the
 busy bee
 at the top.
 
(Kurt or Becky made it and sell it on their surprisingly popular etsy store:Piggy & Dirt.)

This last week was one BUSY week- first there was the dilation deal, and then school supplies.
What an ORDEAL that can be but I got through it with a lot of prayer, friends, and angels.
*a story for another post.
 
J. double checked his back pack last night and we did a run through of his classes then it was to bed for him.
There are still a couple of things that I need to get that I got on Amazon, then un-got by cancelling the order once I saw Wal-Mart restocked and then FORGOT when I picked everything up.
 Got it? Good. Just remind me to get index cards.
 
The week felt like we were being chased by some angry wasps rather than the sublime busy bee making.

Good grief.

I can't believe I did all we did after the dilation inside my chest. It was sheer miracle.
 A dear friend asked me today how they open my esophagus and I didn't know exactly how the thing works. I know that afterward I took a long nap and when I woke up, I could breathe deeply.

Peptic Esophageal Stricture2

Apparently, having your esophagus narrowed makes it so you just use a couple of those
grapes in your lungs and I had gotten used to it that I didn't let it go further because then it would hurt.

When I took a full breath I felt like I did when I had gotten glasses for the first time- I finally saw what I had been missing!! The finite of full vision is something you never can take for granted. Once you have seen what there is with glasses.
Same with breathing.

Thank you, thank you.

And this was only five weeks after they had opened it before......

I am so grateful tonight, or morning.

Readers, being able to breathe is something you just do- like blinking your eyes and being able to gulp down oxygen; clear down to the bottom of my rib cage. It was a moment that I wanted to weep for modern technology. And thank whoever invented it and shake hands with everyone I passed along my way that day.
However, even a few days from when they did it and I have a sore throat.

How it is done will be at the end of the post.

So, back to: BACK to SCHOOL
 
Shout out to Mo over at Amazon for cancelling orders that I got much cheaper once wal-mart got new material in and I actually was fortunate enough to be there when it was put out.
 
 

That's why I can't focus. The camera. But here is our back to school bird... I am telling you, Readers, these are the colors for Fall and winter. Kidding. I actually have no idea.
Let me google it for you since I am up with a sore throat.
K- I just googled it and guess what- I sorta nailed it in some areas! woo-hoo, me!
 
See that green below? That advocado or army green has been in J's room since I was born.
And his room has the same color of paneling around it.
Talk about come backs!
And how lucky am I that I was sent the wrong color of a throw two Christmases ago?
It is that SAME green that matches J's carpet. It took a year to grow on me and now I can't get enough of it.
I want it to be the "green" in my Christmas decorating.
 
I was spot on with my teals thanks to Piggy & Dirt. And one wall in my room is the peach color. Not 80's peach. But the one in the picture. Always loved that color. Love it in sea shells. Love it.
And don't get me started on coral.
 
Remember I told you that a lot of the d├ęcor has to match Aunt Maxine's paintings and they involve a lot of yellow and orange. So...... This left over material that must have a name got turned into a wreath or something verrrrryyyy frooofy and TEAL with gold in it in the form of my stars from Piggy and Dirt were pinned to it.
That cowboy needed a golden cloud and teal stars to hover over him as he rode into the sunset Aunt Maxine painted.
 
I am telling you the home fashion forecast Readers- Animals, not dead- just in pictures, and Go Big or Go Home Froofy is the forecast. Or it better be because this golden cloud above the mantel downstairs is borderline Celestial.
 
Basing my instincts on the above pain palette, I see I went wrong with my favorite Safron star
and I just loved the orchid color!
 
 
 oops. Rasperry was the color to stick with! Dang!
 
 The colors, and being up to date on the styles don't  matter;  how the mantel turned out or the other decorations I put up for the school year, really are irrelevant. It's that I kept up one of the things my Sevie looks forward to as school starts: The decorations.
 
I said this in another post but I asked J. what he was looking forward to now that school is here and he  mentioned about what he loved most; the decorations/traditions. I was sitting in my Lazy Boy Chair just after an esophagus dilation and wondered whether he was challenging me, or what.
 
Then I recalled that I felt the same way. In fact I was bummed when I was in HS and Padre stopped putting up the Christmas lights! It was one strand of the 'Old School' lights but they were tops.
 
Did I just say, "Tops?"
 
But that is what makes a kid feel safe. The traditions. Having the garden put in. When I became too sick to do it, one night it came out in one of our "debates."
 
It troubled him not seeing the different vegetables out there, me changing the water and picking raspberries for our cereal and maybe some jam if there was enough.
 
Tomorrow and this school year is making me just as nervous as J. I want more than ever to help him with his math. I'm more stoked than he is about some classes. Like Spanish.
And Science. History. All of it. I have gone through the list and my stomach is doing back flips to- making sure I remembered a drink for his lunch, washed the socks he likes, so on and so forth.


-By the way I am still under 10 on the prednisone for all you poor people on it and wondering how it's coming.  It is seriously so painful. My body wants to go above ten again and we need to try and see if I can keep up with the taper.
If not, you'll know.Wait- I did have my esophagus dilated and that can make the body go through more stress and what not.
-ANYWAY-

I may have wacked out ideas:

(how cute would these be for the grandkids at Christmas?)


and put up several wreaths in one room, written about Piggy and Dirt and used their stars so much you Readers might have wanted to puke- but they bring us some cheer.
 
 

What isn't cheerful, besides not knowing how to open your locker or it jams when you close is that a lot of kids don't have the school supplies they need.
I am going to take over a bunch of things that are left overs from J's packs of colored pencils that we buy new every year for some reason.
 
I wish they'd sell packs of the most used colors then we could just add red, blue, and black to the pack that would be minus the most used colors and we'd be in business. Or maybe Crayola could just
sell each color separately or in a four pack or six pack like they do their glue.
 
 
Mothers could do it on etsy.
 
 
All I know is school supply shopping is horrendous and I can't imagine the butterflies in a kids stomach that shows up without ANY of them. Or how their moms feel. Sorry moms that are work
 
He won't need colored markers anymore. Yeh, I still have to pick up a few things but never in our lives have we been so fortunate. Which is so surreal- because never has it been harder.
I had miracles happen in a 24 hour time period that would make one fall to their knees for a few hours.
 
 
And, yet, there are still the trials. Sure, it's great to be able to afford what you need and often what you want. But when the background of your whole existence is fighting your own body- and then add years of prednisone..... it's the bitter/sweet I talked about in a previous post. Or to a friend. Or thought to myself.
I can't remember.

More later on how my Sevie survived the first day of School.




 ".....your doctor will determine whether to use a dilating balloon or plastic dilators over a guiding wire to stretch your esophagus. You might experience mild pressure in the back of your throat or in your chest during the procedure. Alternatively, your doctor might start by spraying your throat with a local anesthetic. Your doctor will then pass a tapered dilating instrument through your mouth and guide it into the esophagus. Your doctor may also use x-rays during the esophageal dilation procedure." (ASGE site)
 
Hm. No wonder my throat is sore.





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