Last one wins PG version 2.0

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Status
Not open for further replies.
High Flight
Oh! I have slipped the surly bonds of earth
And danced the skies on laughter-silver wings
Sunward I've climbed and joined the tumbling mirth
Of sunsplit clouds, and done a hundred things You have not dreamed of...
Wheeled and soared and swung
High in the sunlit silence..hov'ring there
I've chased the shouting wind along,and flung
My eager craft through footless halls of air
Up,up the long delirious burning blue
I've topped the windswept heights with every grace
Where never lark or even eagle flew
And while with silent mind I've trod
The high untrespassed sanctity of space
Put out my hand and touched the face of God.
John Gillespie Magee Jr.
 
Maybe you could build an engine cmack but I am not sure how to use that information except to maybe file it for future use......however I appreciate your willingness to share the information..
My talents lie in other directions...clinical sciences and poetry...etc
 
Second loading dose for me tomorrow. Must remember to take ear plugs and slip on shoes.
 
Why would you want to slip..on shoes Kirsty?
Would you like me to send some non slip ones..........just kidding....
Hope everything goes smoothly with the IV for you.
Life seems full of endurance tests for us
Hugz
 
My 3rd loading dose of Entyvio will likely have to be postponed. While the insurance company has finally come around, I think it is too late for Acreedo to get the med to me by this Thursday! I will talk to my Dr's office and Acreedo tomorrow and find out when I can get my medicine.

At least this is now a logistics problem and not a "whose going to pay for it" problem.
 
Wow CMack....was it helicopter ride?
If it was a taxi the city hall should be looking into price gouging
'Course if you were at the top of a cliff....then it counts as danger money....just thinking.....
 
To dream...a perchance to sleep [emoji42]

Some days I wish my healthy friends and family would read about the medications we need to take, to help them understand... and not try to say I can heal myself if I did this or that, eat this or that...

But then they would probably wrap me up in cotton wool to manage the risks [emoji1]

I'm just whinging, so take no notice, just a geyser venting off steam
 
cmack said:
My worst bill was 500 bucks for a 5 kilometer ride to the ER. I thought that was bad.
Click to expand...

We got that beat. Sandy had a few ambulance rides to a hospital just 7 miles from here. Each one of them cost (before insurance) over $1,000.00. Our cost was nothing though, because she is double insured, through my work's insurance and through her medicare coverage.
 
I hear you Aura. I can use a little of your steam. People just don't get it. I do though. Life isn't easy being a crohnie. I appreciate you and I feel for you too. :ghug:
 
DougUte said:
We got that beat. Sandy had a few ambulance rides to a hospital just 7 miles from here. Each one of them cost (before insurance) over $1,000.00. Our cost was nothing though, because she is double insured, through my work's insurance and through her medicare coverage.
Click to expand...

That is very ridiculous to say the least! My goodness. Who can afford that?
I would hate to pay that bill. Thank God it was covered.
 
Aura said:
To dream...a perchance to sleep [emoji42]

Some days I wish my healthy friends and family would read about the medications we need to take, to help them understand... and not try to say I can heal myself if I did this or that, eat this or that...

But then they would probably wrap me up in cotton wool to manage the risks [emoji1]

I'm just whinging, so take no notice, just a geyser venting off steam
Click to expand...

OMG, I know right! My family and friends have this attitude towards me too! ✋

My dad thinks that if I do something like a "bowel cleanup" (whatever the heck that is), I would magically be cured. Wow, I didn't know that there was a CURE for Crohn's :O

Actually, come to think of it, if there was really a cure for Crohn's, wouldn't my GI doc have recommended it already? Why go through all the trouble with all the medication? XD

But on the other hand, my mum, who never fails to think of the worst case scenario, wishes that she could put me into some sort of bubble and let me stay in there forever XD

Oh well, at least I know that I'm not alone ¯\_(ツ)_/¯

Sending hugs your way, Aura :hug:
 
Just a quick post (for me) to say that I haven't disappeared. I made the mistake of downloading a new game app on my phone, and found myself working like a mad idiot today trying to get a "reward" in that game before a limited time St Patrick's day (weekend) challenge disappeared.
Jane, i hope you are able to get some relief at the hospital. CYY, i hope all goes well with yours. I hope all infusions, etc. and everything goes well for all having/ just had them.
Carry on, all, I'll be back to take over the win tomorrow. After that, the win is mine. All mine, i tell you, bwa ha ha :hallo3::hallo3::hallo3:
 
cmack said:
CYY,

Did you have to go back to the hospital yet?
Click to expand...

Yeah, I'll be leaving soon. Keeping my fingers crossed and wishing for the best.

There's a saying in this part of the world that goes something like "bad luck never strikes twice". I don't think that I'd be so unlucky as to fall into the category of people who cannot tolerate MTX too, right? XD

Thanks for the concern though :D

EDIT: Friend requests: I guess it's about time ^^
 
I'm up too late too, time for Zzzzzz. Glad you get to leave soon CYY. And you've definitely been part of this group for awhile now, friend.
 
CYY, my family is similar. My dad is supportive (but clueless). But my mom and brother think that there are miracle cures that I just haven't tried yet. My mom thinks that gluten is my issue (it's not) and if I just went gluten-free that I'd be cured forever (I've tried it and gluten isn't a problem for me). My brother misinterprets self-help tapes. He told me that if I just have "autonomy and mastery" over my illness, and if I just tell my cells to heal, that they'll heal themselves and I'll magically be healthy. So basically he's saying I don't want it badly enough to be healthy and that's why I'm sick. Ugh. Thanks for the victim-blaming. Believe me, if it were just a matter of wanting it badly enough, I'd be the healthiest person on the planet!

Cmack, wow, only $500! That sounds like a bargain to me. There's not much in the US healthcare system that costs as little as $500. And certainly ambulance rides cost more than that here. I can tell you that my hospitalization last year (5 days/4 nights in the hospital) cost over $27,000 before insurance (I paid about $800 out of pocket for that). In the 7 years that I've been ill, I've basically always had medical debt. I'm currently about $2,000 in medical debt and I'm paying that off in installments each month. Once that's paid off, I'm sure I'll accrue some more debt! I want to get into remission not only for health reasons of course, but also for financial reasons. It's too expensive to be ill in this country.

So you guys remember that there are shakeups at my workplace and I was worried about layoffs? I haven't even met our new regional president yet, but she keeps assigning more work to me. It's getting a bit stressful, but hopefully more work is a good thing. I think this means she likes my work and appreciates what I do and sees me as someone who is competent. So therefore I'm less likely to be laid off, I hope. I had heard an unofficial rumor that my department should be safe from layoffs, but it's nice to feel like our new president likes me.
 
Every remicade infusion is billed approximately $40,000 for us before insurance of course. I'm thankful we pay only $1750 per year. Once we reach that, we are covered for the rest of the year. Can't believe they charge that much!
 
Trysha said:
High Flight
Oh! I have slipped the surly bonds of earth
And danced the skies on laughter-silver wings
Sunward I've climbed and joined the tumbling mirth
Of sunsplit clouds, and done a hundred things You have not dreamed of...
Wheeled and soared and swung
High in the sunlit silence..hov'ring there
I've chased the shouting wind along,and flung
My eager craft through footless halls of air
Up,up the long delirious burning blue
I've topped the windswept heights with every grace
Where never lark or even eagle flew
And while with silent mind I've trod
The high untrespassed sanctity of space
Put out my hand and touched the face of God.
John Gillespie Magee Jr.
Click to expand...

My mom used to always quote this poem, grew up knowing it. She said the tv would show airplanes going across the screen and the poem being read when it was time for sign off at night. She remembers this as a teenager....wow remember when tv used to sign off at night.
 
Madhu said:
Every remicade infusion is billed approximately $40,000 for us before insurance of course. I'm thankful we pay only $1750 per year. Once we reach that, we are covered for the rest of the year. Can't believe they charge that much!
Click to expand...

That is ridiculous! And Remicade is the oldest of the biologics. Makes no sense whatsoever. I was billed $15,000.00 for 1 infusion of Entyvio. I thought that was bad!
 
DougUte said:
That is ridiculous! And Remicade is the oldest of the biologics. Makes no sense whatsoever. I was billed $15,000.00 for 1 infusion of Entyvio. I thought that was bad!
Click to expand...
I think most of the bill is for the hospital facilities and nursing than the cost of remicade itself. When we enrolled in remistart, we found that the actual cost of remicade comes only to around $400
 
Yeah, when I had iron infusions, they billed my insurance well over $1000 per infusion. And most of that was hospital costs - it's apparently not cheap to have somebody sitting in the infusion center for 2.5 hours at a time getting iron through a slow drip. The iron itself was not expensive at all, most of the cost was for the nurse and the hospital and the infusion center, etc.

I'm thinking about buying a newer car. I've been telling myself that I'm in no rush as my current car is fine (older with higher mileage and some quirks, but runs fine). For a new car, I wanted something that's small and efficient, Japanese (Honda or Toyota), low mileage, not too expensive, and no accident history. And, this is silly, but I want it to be blue. :p I just found a car online that meets all my qualifications, and it's blue! I might go test drive it soon. It's in my price range and it looks really good to me. And I'm really stupid but I'm excited that it's blue, ha ha. :p Wish me luck with the test drive!
 
That's funny how each country had there own way of signing off. I would have never guessed. I learn something new each day.

I finally got my butane soldering iron in the mail. I'm pretty stoked about that. It works great! :)

I just came in from outside having a look around the back yard. Things are looking pretty good. It is starting to feel like spring! I'm very thankful for getting some fresh air today.

Peace!
 
Still lots of brown colors in my part of the world but the sun is more effective at warming the air temperature these days and the smell is so fresh!

Good luck on car shopping Cat. Blue is a great color. 😊
 
Lots of brown here as well but I agree that it feels and smells like springtime. It was 60 degrees F today and I took a lunch hour walk without a jacket and it was just lovely! The sun came out and it was gorgeous to be outside with the sun shining and the warmth of spring. The birds are all chirping and there are little hints of springtime everywhere - even in my own yard, the day lilies are starting to come up.

Thanks, Shanen! Blue is my favorite color, but oddly enough I've never owned a blue car. I've owned 4 cars in my life, my current car is black. The other 3 were white, brown (with a yellow interior), and fuchsia pink. :p So I told myself that I'm going to treat myself to a blue car this time around. I'm slightly nervous because the blue car I'll be looking at is a manual, and it's been a long time since I've driven a stick shift. I used to be very good at it back when I owned the fuchsia car (nearly 14 years ago) as that car was a manual, so hopefully it's like riding a bicycle and I can just get right back into it without needing any sort of refresher. Even if I don't end up buying this particular car, I still need to be able to test drive it. So I'm just a little nervous about that.
 
Mornin' everyone! ^^

I had my first MTX jab on my left tricep yesterday. Funny how the nurse had to pinch my arm just to find enough fat to insert the needle XD

Although I was feeling a little nauseous after that, but everything went smoothly. The nausea became much better today after catching some sleep last night. So yeah, everything's fine and it looks like I might be able to get discharged today \ ^^ /

I'm still waiting for my prescription of folic acid that I requested from my GI doc on Friday. Hopefully that comes with the discharge papers as well :D

Breakfast is coming in about half an hour. No surprise this time; the dietitian has requested for Modulen ._.
 
CYY said:
Mornin' everyone! ^^

I had my first MTX jab on my left tricep yesterday. Funny how the nurse had to pinch my arm just to find enough fat to insert the needle XD

Although I was feeling a little nauseous after that, but everything went smoothly. The nausea became much better today after catching some sleep last night. So yeah, everything's fine and it looks like I might be able to get discharged today \ ^^ /

I'm still waiting for my prescription of folic acid that I requested from my GI doc on Friday. Hopefully that comes with the discharge papers as well :D

Breakfast is coming in about half an hour. No surprise this time; the dietitian has requested for Modulen ._.
Click to expand...
Hope the best for you.
 
Hi CYY
Good to hear things went well for you today.
Don't be in too much of a hurry to leave hospital....they may want to see how the next injection goes
I love your breakfast...?
winning...
 
Funny that CMack....now you've got me going....
Have not eaten much all day....one of those days we all know so well....think I'll have an egg sandwich made with focaccia cheese bread..a very light easy to eat bread...it has been a depressing day for me....a very good friend has cancer and they seem to have run out of options for now....it has hit his wife ,my former colleague,very hard.
its a bit late for eating...but...why not..
Did you go to the store yet CMack...
 
Can't take your delicious food CYY....I'll let you know how the egg sandwich tastes though....
Just made it...now eating it.....dee-licious........
 
Well CYY .....it's an acquired taste....the jury is out on that one...imagination is a wonderful thing though....
 
The mountain and the squirrel had a quarrel
And the former called the latter little prig
Bun replied you are doubtless very big
But all sorts of things and weather must be taken altogether
To make up a year and a sphere
And I think it no disgrace to occupy my place
If I'm not so large as you...you are not so small as I
And not half so spry
I'll not deny you make a very pretty squirrel track
Talents differ,all is well and wisely put
If I cannot carry a mountain on my back...neither can you crack a nut
Ralph Waldo Emerson

In this poem a squirrel and a mountain have a quarrel because the mountain feels more important.
Each person has their own individual talents and purpose in life, none greater or less than another.
 
Hope you don't mean those whistling kind.....can't sleep right now
 
Now keep in mind I am without a mate. I liked it when B.B. King said, "Just because I like all the ladies, it doesn't make me a dirty old man." I like people in general. That's just me.
 
882754813f1f4822dfb36ae53e82ec7c.jpg


Just been asleep for couple of hours. At mums for tea. Waiting for Steve to fly back to Wellington then drive me home.

Quiet day planned for tomorrow.

Sorry Trysha about your friend. Love the poem. I think you are an amazing knowledgeable woman.
 
Update: Settling the discharge paperwork right now. Getting ready to go home soon. Woohoo! *\(^o^)/*
 
Just ordered a chicken and and egg from ebay to see which comes first, will keep you posted.
 
CYY, yes, EN is definitely an acquired taste! I was on Vivonex (elemental formula) last year. The taste of Vivonex, it reminds me of horses and wood. :p It's got a barn-like flavor with a hint of glue, it's hard to describe. It definitely doesn't taste like food and it's not delicious in any way, it's pretty gross. But, even so, I still find myself craving it from time to time. My body must know that it was very good for me, that's all I can figure. I don't know why else I'd crave something that tasted so disgusting.

It sounds like my dad might come down and test drive the blue car with me if it's still available on Saturday. That's good, because it sucks being a woman by yourself trying to buy a car without getting ripped off (my husband works Saturdays so he can't come with me). It's a stick shift, though, and my dad isn't allowed to drive it. :p Years ago when I bought the fuchsia car, I couldn't drive a stick at the time. My dad said he knew how to drive a stick, and he volunteered to test drive it for me. So we went to the house of the lady who was selling the car, my dad hopped in the driver's seat... and he immediately crashed it into the lady's garage door! Oops. Turns out he hadn't driven a stick in nearly 30 years, and he just plain forgot to step on the clutch before turning the car on. So the car lurched forward and hit the garage door. (Fortunately there was no damage to the car and just a smallish dent in the garage door.) Sooo, when I test drive the blue car, I'm doing to make darn sure to step on the clutch, and my dad isn't allowed to drive it!
 
Our dog,Alex, was able to herd another dog who had jumped out of a car and kept that dog from getting hurt.
 
Hmmm. I'm grumpy now. What kind of a used car lot isn't open on Saturdays? I don't think I'm going to buy that blue car after all. They're only open when I'm at work. Hmph!
 
Good job, Alex! The most herding my dog can do is to herd squirrels out of the yard. :p And she's a herding breed! Ha ha.
 
Hells bells Cat...not open on sat what the heck is that all about. I wanted my car to be blue but had to settle for red 😕. Only brand new ones were available in blue at the time n i couldnt afford brand new... hope you can get sorted with a blue one tho hun. 💕

Aw bless Alex, what a good dog ☺ . Give him a hug n a well done from me Ron🐶🐾

Cyy so glad your on your way out of prison.. sorry hospital 😃
. Take it easy now 💕

Trysha your a poet on legs girl. Loving them hun. Keep well 💕

Trev which ever comes 1st let us know...then we will all know the answer to that age old question 😃
Love hugs n best wishes to you all... 💖💕💞💝💋💋💋
 
Just before I go to bed... Can anyone explain why I can't seem to access my notifications that are at the top of the page. I press on it and nothing happens??? 😕 💕
 
Mandy, I don't know but I'm tagging Jennifer so that she can look into it. Tagging Lisa too. Are you accessing the forum on your phone or on a computer? They like to know that sort of detail when there are weird issues with the forum.
 
I just tried and found that the drop down menu is showing up on the far right off the screen on my tablet..... Took a few tries to find it..... Let me know if you still have problems!
 
Not looking forward to tomorrow.....appointment with GI.
When we met last November he mentioned scopes when I was recoveredfrom the knee surgery.
His mood was not the greatest at that time....think he has too many patients.
Here's hoping for a more cheerful visit...if that's possible.
The time has come...the walrus said
To talk of many things
Of shoes and ships and sealing wax
And cabbages and kings
And why the sea is boiling hot
And whether pigs have wings.
Lewis Carroll...TheWalrus and the Carpenter
 
Any of the techie people on here have any experience with rasberry pi, i want to build a remote weather station. We have only been away a few days and i am already bored, and i am here till june. Maybe that explains the lame jokes, although i thought the flower one was ok.
 
Hey Trysha, we are seeing the GI tomorrow too. But actually looking forward to it. Lol. I can't wait to find out what is trying to bring him out of remission. He is still a bit on the downside, but definitely better than last week. I can't imagine what you crohnies go through physically, it sucks to just see a loved one suffer :(

Good luck with your appointment!
 
Madhu,

You are a very caring person. I really hope everything improves for your husband and for your whole family. It is hard to have a disease, if it is under control things are much better. I wish you the best at the appointment tomorrow. :)
 
Trysha,

I wish you the best at your appointment. You are going in well armed, with plenty of knowledge. That never hurts.

Success is the only option. :thumright:
 
Sometimes knowing what to expect and outcomes can be harder than knowing very little.your comments are much appreciated though CMack...thank you for caring..
Madhu...hope things go well for you both tomorrow....it is very hard to watch loved ones suffer...I have been there many times being from a large family and having to part with younger ones as well as older, at an early age.
However...the sun will come out tomorrow...bet your bottom dollar...
 
Sleep my child and peace attend thee all through the night
Guardian Angels God will send thee all through the night
Soft the drowsy hours are creeping
Hill and vale in slumber sleeping
I my loving vigil keeping
All through the night
 
Oh my, just recovering from vomiting and pooping at the same time. So not nice.
 
Then I had both Wolf and Jammer on my belly when I laid back down in bed. It's the gut wrenching and bowel cramps I really do not like.
 
Hi Lisa. Thanks for that, I have found it in the same place. Would never have thought to look there.. Also I can't find visitors msgs anymore either?? 💕💕
 
Madhu and Trysha... Hope all goes well for you at your appointments. Best wishes n love 💕💖

Love and support to all :ghug:
 
Trev said:
Any of the techie people on here have any experience with rasberry pi, i want to build a remote weather station. We have only been away a few days and i am already bored, and i am here till june. Maybe that explains the lame jokes, although i thought the flower one was ok.
Click to expand...

No experience with Raspberry Pi here, but loads of experience on a similar microcontroller called Arduino (I've got UNOs and Pro Minis). One major difference that I can think of between the two is the programming language used: Raspberry Pi is in Python, Arduino is in C.

In my opinion, Arduino is better because it is easier to get the hang of C programming language, and there are more tutorials online on similar projects others might have built. Plus, everything's open sourced on Arduino.

I think you may want to invest in some DHTs, LDRs and a couple of other sensors. And an LCD screen to display the weather information. You might want to consider getting some LEDs as well. Oh, don't forget to get either a breadboard or a perfboard (with a soldering iron and some soldering lead), and lots of wires. And you could also build a box to hold all your electronics too.

If you're thinking about getting an Arduino, my suggestion would be to get an UNO. And download Arduino IDE so that you're able to code in all your stuff. SparkFun is a good website to get all the above-mentioned electronic components.

Feel free to drop me a message if you need help with anything (except coding in Python)! :')

Have fun! :D

Your fellow electronics hobbyist,
CYY ^^
 
Hi everyone!! I've been reading this thread for a while now and I love how positive and supportive it is in here. I could use some of that myself so I thought I'd come and say hello.

I'm slowly sliding into the spiral of a flare now and it's getting harder and harder for me to concentrate on my uni work thanks to pain and brain fog. I'm in the library right now trying to get as much work done on this lab report today as I can. It's raining horribly outside... really, the only reason I made the journey to the library is because my flat won't have any power for six hours today, thanks to maintenance on the electricity. Still, it's forced me to get out and to the library and get some work done, so I suppose it's a blessing in disguise!

Hope you're all doing well! :)
 
Status
Not open for further replies.

Similar threads

L
The decision : On Biologics or Not
Replies
18
Views
3K
NeverBeenEasier
N
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D
valleysangel92
Hello Old Friends
Replies
1
Views
308
my little penguin
my little penguin
K
This has destroyed my life.
Replies
27
Views
3K
kephra
K
Crohn2357
GUT STERILIZATION FOR CROHN’S DISEASE (THEORETICAL CURE)
Replies
2
Views
1K
cheka
C

Latest posts

Back
Top