I found this song tonight on another blog.

As I read the words, I was instantly back to Justin’s jr/sr years of high school. He was in very bad shape and we had found no doctor to help us. He went through a suicidal phase, I believe in some people that is a part of Cushing’s. It’s not something I talk about much. I lived in fear for quite awhile never knowing if he would be alive the next day. I cried so many tears thinking of the torment he was going through and there was nothing I could do for him.

He’s My Son – Mark Schulz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Can You hear me?
Can You see him?
Please don't leave him
He's my son

Just because I found a song that reminds me of Justin in no way diminishes the pain I feel for Jess & Bill. Just haven’t found the song for that. I think there may have been more heartache with Justin because he was getting no help and he was sort of blazing the trail for our family.

I finally ordered new glasses today. Should have them in a couple weeks or so. It’ll be nice to get rid of these “readers.” I really need them or I can’t read anything but it’s a pain to have to deal with them. Jess went with me just to make sure I didn’t picky out anything too dorky!

Jess had her MRCP (Magnetic Resonance Cholangiopancreatography) today. I really don’t think anything will be found. Dr. M decided to order this test back when Jess was in the middle of her five weeks of puking after she had her BLA. I think the vomiting was just something that happened and really has no explanation. Guess we’ll see.

She also had blood work for Dr. M. He wanted to check her liver panel again. Actually, this was going to be done several weeks ago. When we went in a few weeks ago to do the blood work, the orders weren’t there. Now, if the supervisor would of been the one helping us, he would of just drawn the blood and worried about getting the orders later. Of course the one time he did this he trusted us to know what tests were being ordered. It seems a particular nurse has trouble actually getting the orders faxed over to the lab. Anyway, the last time we were there, we got tired of waiting for the orders and said we’d be back. Kind of forgot about it for awhile then. Hope the liver panel comes back okay.

Justin told me the other day that he forgot his afternoon dose of hydro one day. I asked him when he remembered. He said when his eyes went really weird at work he remembered that he needed hydro and took it right away. I thought it seemed like a weird symptom but he said his eyes cleared up after taking the meds.

Bob’s family got moved to Florida last week. I’m sad. My sister is taking Dad to see them next week. When they first talked about moving, Dad said he really wanted to go down and see where they were living. I think Elsie is going so soon because school will be starting in a few weeks (yikes!) and it will be harder for anyone to get away and take Dad to Florida.

A few more photos of the farewell meal for Bob’s family.     

♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♫♫♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫

“I don’t know what I’m supposed to do

so I sit down and I cry too”

♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫

From the song “Her Diamonds” by Rob Thomas

I don’t think I get this quite the way it’s meant in the song. But it seems quite appropriate at the moment.

Cushing’s is a b**ch. I’ve always thought that the mental part was at least as bad if not worse than the physical. Of course I’m looking at it from a different perspective than the patient. I just (?) have to live with someone who has Cushing’s.

This is a quote from a “cured” Cushie.

“My relationship with my hubby is way better. This disease does a good one on marriage - for anyone who thinks their spouse is the worst person ever, I'm sorry but you need to take a few deep breaths, grit your teeth and wait for cure before deciding on a break-up...it may turn out that a lot of the blame is at your feet - not your partner's. It really distorts your view of other people so try not to jump to conclusions about someone with this cloud over your head.”

I really, really like that. With Bill I never know, is it him, is it the Cushing’s? Who is he? Do I know him? Did I ever know him? Which one of these “Bills” that talks to me is the real one? Does he know, does anyone know? Will the real Bill please stand up. Will I know you after surgery if you go into remission? Will we be able to have a regular conversation without some innocent remark setting you off?

And some days you wonder why I hardly talk anymore. If you ever get a cure/remission will I ever be able to make you understand what it’s like to live with this damn disease as my partner?

Since we started suspecting that Bill had Cushing’s, I’ve wondered about his sister. She had/has a lot of symptoms. And like Bill her blood pressure has been high for years, starting when she was really too young to have to worry about that.

Bill said when he talked to her the other night she told him she is getting more symptoms and is starting to feel a lot like Bill does. That must be miserable. She does have insurance now but you wonder what use it is as I doubt that she would have any better luck with her local doctors than we had with ours. I really don’t know if she could afford to travel to a specialist, but I suspect it would take a lot of saving to get there.

What a truly horrible disease Cushing’s is. And no one understands what it puts a person through.

Plane tickets bought and reservations made at the Extended Stay in Houston. Somehow that makes it seem more real than when I scheduled the surgery.

I have a very nice boss. She had me use the points on the store’s credit card to purchase the plane tickets. She’s been a big support all these years. Good thing, it would of been tough keeping my job without her.

Bill is home. He had been staying in Plainville for about a month. It was closer to the rig. Now the rig is closer to home so he is home again. In the time he was gone he was only home a couple of times and then just for a few hours. When he was home either he was sleeping or I was at work – or both.

After not seeing him for so long it’s somewhat astonishing to see what he looks like. When you see someone every day it’s easy to get used to how they look. Cushing’s is really doing a number on Bill. He looks old.  Although I do think his pain level has something to do with how he looks. The higher the pain level, the older he looks. After some good meds and some time for them to kick in, he doesn’t look quite as old.

The texture of his hair has changed a lot also. I used to envy him his hair. It was black and thick. It’s quite gray now and just has a weird texture to it.

I’m so glad his surgery is only a month away. Of course we neither one have real high hopes of remission but maybe some relief. He is in incredible pain and still works. I truly don’t know how he does it. Sheer willpower because he knows if he doesn’t keep working he will no longer have insurance and no hope of surgery. He’s really caught in a bad place. It makes me feel so bad for him. There really is nothing I can do to make him feel better. I wish there was.

To make it all worse, he hasn’t really had a day off in about a month. I know, a while back I was moaning because there wasn’t enough work which meant not enough money. Now he’s working steady and it’s about killing him.

We leave for MDA in Houston on August 11. I’m starting to count the days.

I have seen this list before but tonight when I saw it posted on the Cushing’s board I thought I should include it here. I need to study it and have the kids study it also. There is so much to learn after having the adrenals removed.

This is from the UK Addison's site

How to distinguish between adrenal insufficiency symptoms related to inadequate Florinef or Cortef dosages.

How can you tell if your fludrocortisone dose is inadequate? Not always easy, because the symptoms are more subtle than the grinding headache, nausea and whole body chills of not enough hydrocortisone. In the past, people who need more fludrocortisone have typically reported at least some of the following:
1. Cold hands and feet - can also be numb because blood pressure is too low for proper circulation
2. Shaky hands
3. Feeling extra sleepy
4. Unable to get through the day without a rest
5. Feeling extra thirsty
6. Needing to pee after lying down for an hour or two
7. Muscle cramps, tics or spasms
8. Rapid or erratic pulse, perhaps with intermittent slow beats
9. Feeling dizzy when getting up out of a chair/bed
10. Sudden headache when getting up out of a chair/bed
11. Specific type of headache, eg eyebrow piercing
12. Salt, liquorice or lemon juice cravings
13. Non-specific exhaustion and despair

Symptoms typically associated with inadequate dosage of Hydrocortisone/Cortef include:
1. Headache
2. Nausea
3. Vomiting
4. Diarrhea
5. Chills
6. Extreme weakness
7. Inability to speak or slurred speech
8. Dizziness
9. Loss of appetite
10. Sudden irritability
11. Piercing lower back pain
12. Awake from sleep feeling like you can’t move
13. Abdominal pain

Bill is home. The rig’s next location is only about an hour from home. The last location was over two hours away and he stayed in Plainville. He’s only been home a couple of times for a few hours in the last month.

Last night I finally got brave and went through the whole stack of medical bills that has been laying on the table. It wasn’t quite as scary as I thought it would be. I also went through all the insurance statements. It seems odd that I can find nothing for Justin’s surgery. There are a few insurance statements that relate to the surgery. I even went through the statements online and can’t find one. I know how much it should be because it should be real close to the amount of Jess’ bill. Plus, we’ve not gotten a bill from the hospital for his surgery. Weird.

And I was right, my brother and his family didn’t leave for Florida today.

Jess & I had an interesting time today.

We took Dad to lunch. The little girls went with us for the last time. They should leave for Florida next week. I meant to get a picture of Dad, Jess & the girls together but when we got back to the farm there was a mad dash for bathrooms and the photo never got taken.

As we were returning to the farm after lunch we saw there were goats out at my sister’s house and her family was gone for the weekend. She just lives a half mile from Dad. One of my first thoughts when I saw the goats was “I wish I wasn’t wearing flip flops” as I knew I would have to help round them up. Jess & I found them in a pasture half way between Dad’s and Elsie’s houses. We took them on through the pasture and circled them back to their place. My brother and cousin went up and opened up the fence to let them in the back way.

Trust me, you don’t want to wear flip flops and capris while traipsing through a pasture. But there really wasn’t time to go find a pair of shoes at Elsie’s house. When we got the goats up to where my brother Bob had the fence (not the gate, it was the fence) open, she told him “Well, I can cross goat herding off my things to do list.” She can also mark off herding goats in the heat (around 100°)without enough hydro! Oh, and she was also in flip flops and my brother was in sandals. She felt pretty rough when we got done, took some extra hydro and kept the AC on high the whole way back home.

She maybe wouldn’t of felt quite so bad but this morning she weaned on her hydro. She was going to drop from 15 mg to 12.5 mg but instead just took 10 mg. Neither of us even gave it a thought when we got out of the van to go chase goats.

So that was our excitement for the day.

Justin says he is feeling better but still taking some extra hydro. Hope it’s all better soon. He has been back to work for two days. I think it tires him out.

Last night we had a farewell meal with my brother, Bob and his family. It seems they really are moving to Florida. It’s been talked about for so long that it has always seemed to be in the distant future. But the future must be here because as of last night the plan was for them to pull out next Tuesday. I figure that really means they will be gone by Wednesday or Thursday.

Bob, Jackie

Genial, Grace & Gianna

Jay & Grace

Jay & Gianna

Jay & Genial

 

The fire pit mostly smoked and hot dogs were eventually put on the grill. Jess is in the black tee, looking good, huh?

Jay, Gianna & Genial roasting marshmallows.

Shooting off roman candles. No this is not safe! But no one got hurt.

Part of the family enjoying the meal.

Good bye, Bob & family.

Colby now has three confirmed cases of the H1N1 virus. I know that doesn’t sound like a lot but considering how small of a town we are, it really is. And there are many more that are quarantined at home. Time to be very careful.

Sometimes I am so stupid!! Today I was at Palace Drug picking up a prescription for Justin and standing next to me was a lady buying a bottle of B12. Light bulb moment. I haven't taken my B12 since before we went to Milwaukee for surgeries. How dumb is that. It's prescribed for once a week. No wonder I haven't been feeling so great and feeling sooooo depressed. Granted, there is a lot going on right now that could be reason to be depressed but it usually doesn't get me down quite this bad.
So I came home and took a dose and I actually tackled all that mail that has piled up on the table for two months. Scary stuff. Bills that should of been paid a month or two ago. I hate paying bills late. Which is why most of ours are now set for auto debit. The last few years, I just can't seem to remember to get things paid on time. But these were all medical bills, not set to auto debit. I remember that I did used to be organized. I keep hoping that person comes back to live in my body - soon.
Justin has an ear infection and a terrible cold. Unfortunately it zapped him good before he was really aware of it. By the time I was called this morning he looked really bad. Mostly I think he was low on hydro. He had a doctors appointment today and got some meds. Extra hydro and a lot of sleep today and I think he was starting to feel some better. I brought him to work and made him sleep on the couch.
Some day we will all get used to this no adrenal gland thing and not get quite so worried with every little thing. But he looked so bad when I got to his house and he had been vomiting. I had reason to worry. A few days ago he had weaned down on his hydro. I told him until this cleared up he better go back up on the hydro. No need to take chances. I think it was just poor timing that he was getting an ear infection at the same time he was weaning. He had felt really good up until last night.
It seemed like I spent half the day running around for/with him.
There is a learning curve to all this and obviously we have a lot more to learn.

Jess & I stayed out way too late last night. On our way home from Sue’s we saw that the Klipperts were still out shooting fireworks. So we decided to stop. We stayed and talked for a long time. Morning came way too early today.

Saw Justin for a few minutes tonight. I asked him how much hydro he was taking at the moment and how he was feeling. He said he’s taking 15 mg in the morning and 5 mg in the afternoon. I asked how he felt on the lower dose and for once it wasn’t a wishy washy answer. He said he thought he felt better. So that’s good.

Jess completely skipped her afternoon dose yesterday. That wasn’t the original plan just the way it turned out. She seemed to do okay. But I’m not sure it’s something that will happen often. Today she took 2.5 mg in the afternoon. She’s on 15 mg in the morning.

We’ll see how it all plays out for both of them.

Happy July 4th!

Long may she wave.

 

Tonight Jess & I will go out to my sister, Sue’s house to watch the fireworks. She lives right outside of town so we have a good view from her front porch. We usually set off our own fireworks while watching the public display. She is outside the city limits so it’s legal to use them at her house. Some years a lot of the family shows up and some years it’s just a few of us. I think a couple of years ago there was just Sue & I.

I was thinking about what July 4th was like when we were kids. I don’t remember ever going to a public fireworks display. My older brother, Sam, usually orchestrated one. I think what he liked the most was using firecrackers to blow cans into the air. He spent a lot of time getting everything set up just so and then lighting the fuse. It seems he spent a lot of time doing that in the driveway.

Dad seemed to usually be in the field. I remember some years Mom would have hotdogs, chips and pop for lunch. Talk about a treat! I remember eating on the front porch at least once. That seemed pretty cool. 

I was still playing with Shan’s camera today. After we took Dad to lunch I took a picture across the road from his house. He has asked me to several times. I wanted to wait until the pasture was green and then I kept forgetting to take a photo. This is pretty much what he would see if he walked out his front door.

I think he wants the photo because he misses seeing this view. He doesn’t leave his house often these days. Some things are just harder when you’re ninety.

 

My sister, Elsie, just lives a half mile from Dad. We stopped there on the way home. Her daughter, Manda and her family are there for a few days. Jeff & Jordan were not there at the moment but Isabella was. She made a great (and willing) subject.

 

Isn’t she just so cute?

Manhandling the dog!

With Jess.

Just running.

Feeding the cats.

Love those purple shoes!

Helping (?) her Grandpa.

 

Ronnie getting ready to cut wheat. I was standing across the road in front of their house. Shan’s camera really has a great lens.

I always have liked interesting windows. This is on the side of a cattle shed.

Jess picked up an application for a job today. They told her not to bring it back until Monday as they will be very busy this weekend. It will seem really odd, her having a job. I’m assuming they will hire her.

Justin is starting back to work next week. Wednesday will be his first day back. I saw him for a few minutes today but forgot to ask him how he was feeling after he cut back on his hydro.

For the last several months my left shoulder has been pretty sore. A lot of days I can’t lift it above my head without a lot of effort. I’ve come up with a lot of different reasons for it being sore. Not too long ago my right shoulder started aching sometimes. Yesterday I got a few weird, sharp aches of some kind on the top of each foot. It has crossed my mind that I could have rheumatoid arthritis. I got to thinking that I’ve only been taking half a dose of my imuran for Crohn’s. I feel okay on that dose and since it has the potential to cause liver damage, I’d really like to take as little as possible. I remembered that when my boss’ sister was on certain drugs for her RA the drugs also helped with some of the GI issues she had. I wondered what would happen if I started taking my evening dose again. So last night I took my dose and woke up this morning with barely any pain in my shoulder. That’s good except I’m afraid it means that I do have RA, at least early stages. It will be interesting to see how this goes. I guess the good thing is that the same meds are quite often used to treat Crohn’s and RA.

My niece had to get a camera for the college horse program. I helped her order it a few weeks ago. She brought it by today for me to play with. She got a Nikon Coolpix P90. I had found this camera online several months ago and was really wishing that I needed a new camera. It has a 24x optical zoom!!! Impressed me.

I took it out and played with it after work.

I was probably 20 ft. away from these flowers.

I have no idea what these are, but they photograph well. They look even better close up.

We ran into a friend while at the Experiment Station taking pictures. It’s a great place to take photos, so many plants and flowers. I liked his tee.

In the photo below, I was standing right out the back door at work. The power pole that is in the center of the photo is three blocks away. Pretty impressive, even if the photo is boring.

I didn’t bring the instruction book home. I should of because I want to see what some of the “extras” do.

Since we have a surgery date I need to start checking into flights and hotels. I always hate doing that. I'm always sure that as soon as I book one, I'll then find one that is a lot cheaper. I'm going to book our flight using the points on the store's credit card. My boss told me to use them. That was very kind of her. She has always been supportive.
Tonight Jess had a chiro appointment in Oakley. We set up an appointment for Justin next month. He and Jess can go over together. After the appointment we went on to Grinnell and ate at the VFW with some of the family.
Jess thinks her hydro dose might still be a little high. I think she said she'd wait a few days and then drop another 2.5 mg and see how it goes.
I talked with Justin tonight and he's thinking that he may also need to be dropping his hydro dose. At first we thought that his dose was too low, so he added an extra, small dose some evenings. Last night I remembered that he got some of his highest midnight results when he felt the worst. So I got to thinking that it's possible that he's too high now and that is why he isn't feeling the best. Or maybe I'm wrong. Guess we'll see. He said he's talking to his boss soon to get back on the schedule. Hope that goes okay.