Sunday, May 31, 2015

Losing Friends, Finding Them Again


Christine Daae by dminor78

(I never had group parties and watched the show Friends like a lot of people I knew did. -Just for the record.I did watch some episodes and laughed.  I was sick during their popular span of popularity so I didn't understand a lot of the hoopla and parties with guacamole dip and chips for people who were friends in real life that got together to watch a movie called "Friends" I was busy starting my business of Crohns Co. and trying out Prednisone. )

I finally moderated some comments and one made my heart break. So here is my letter to this person.

Dear Reader who anonymously asked me some questions tied to the day I was trying to return Jaden's church pants to Kohls,

For the new Reader I had to return some pants that didn't fit my son, J. to Kohls and it was evening and I was running out of cortisol, (energy) that has been synthetically given to me steadily for over four year.intermittently twenty years)
 So it was kind of tragic to get running low. Like the time we were with Friends in the middle of the desert after boating with their new boat and the tire started on fire. Not a car in sight.

Once at Kohl I had to walk clear to the back. Then I wondered if I should try to find a shirt that wouldn't embarrass Jaden at his game. I walked while pushing the wheelchair. This must have looked funny. 

Despite the bomb time clock of cortisol ticking, I sought out a shirt that would cover the Cushings weight I have put on. I have been out of those boys' life for four years. And I look different. And there are the Yo Momma jokes.

So there I was collapsing while looking for a shirt and found several. I picked out a bunch threw them in the wheelchair and then tried them on..  frantic to get to his game and see him pitch.

*The movie Friends makes it another season. They made a lot by being such good friends.

But it didn't happen- that I could stay because my body broke down in the store. By broke down I mean it literally started to lose parts- my left leg, the one that dorsal flexed down the stairs started to massively hurt, as I hobbled to the bathroom as fast as I could.

 Once there I was then held hostage by my own body!

'Thank you Dear Father, for helping me walk to that place where the last 20 years I have been in more often than most and have seen more bathrooms in more places than most. ' (part of my prayer

Behold, The BATHROOM:

 My Gethsemane.

It isn't a cool Gethsemane. But whatever.

The questions a Reader asked me was touching and had to do with friends and them distancing themselves after an illness. Or maybe it could be in general to anyone reading. She wanted to know or just talk about how it hurts.

It just does.

When my first friend moved I was so sad. However her dad got so angry at the mother one day when she accidently vacuumed over the chord. And the mom was so nice. Maybe they had money problems but I decided then and there I wouldn't marry a man like that. And I didn't.

We played a lot together but it was a three some with another play date girl and so that was hard. She moved. I felt a hole in my heart. Now what?

Then a miracle happened another friend moved in across the street. We played even more and she was from India and named Shobba Sharma,and her mom had long black hair that I could sit and brush. She had the dot on her forehead and wore the traditional dress. (she struggled with English so we communicated through doing hair which gave me a bird's eye view to her clothing.

It was so exotic. And bright. And different. And I liked combing hair.

There were no other girls that competed with play time with Shobba. I don't know if it was the fact they were the only foreigners on the block, I mean neighborhood, or what. And that they weren't of the same faith? They didn't live there long enough for many to get to know them.

But then they moved.

 (Remember when everyone was going to beauticians and asking for this cut on Jennifer Aniston? And it suddenly was the biggest hair do ever???)

Once again I was in utter pain. I sat on my big wheel at the top of Percivals "steep" driveway while the sun was setting and cried. Then I pedaled as fast as I could and took the narrow turn, skidded and kept on pedaling. Big wheels are fun. And that's what seemed to help me work through losing Shobb and all the hours we played Gingham Dolls. She had all of them and so it truly was a real loss....

But guess what?

Someone else moved in her house and they had a daughter my age too!
*they moved too. But then my friend around the block was there for twenty plus years so I was good.

 People, on the whole, instinctively pull away when something they don't understand or is scary, happens to another person. It is human. I have done it. When you come from a town that hasn't had food prepared with real spices from India their nostrils are hesitant.

Language gaps don't help either. Shobba was a great translator, her Dad spoke English well but she had older brothers that scared me. Why? Their names. How lame is that? I was four or five so give me some slack.

(And another season, they have more money and look better due to losing weight and plastic surgery.)
Have you ever been to a funeral? Or seen a person who has lost a loved one and not known what to say so you don't say anything, figuring they want some space?

Well, that is the same with disease.
We tell ourselves that 'someone else has got it' and they are being taken care of and so we pass on.

I took a college Psychology class where I learned that the more people that witness a tragedy, the less likely someone is to call 911. Why? Because we think the other guy has already done it and we just sit and stare.

That taught me to be the one to make the call even if it flooded the lines.

When someone is sick, it's almost as if we are afraid we might "catch" it. Like cooties in elementary. We don't want our friends to see the class nerd sit by us at lunch cause we may end up being teased at recess. It's a big circle of hurt and pain but we dish it out as much as we cry over it, too.

Who wants to catch or hear about Crohns? My own son has asked me to not talk about something at the kitchen table as he tries to eat and he's been around me over a decade! *and had just used the bathroom himself so it was totally hypocritical! (sarcasm and happy humor when you read that last part)
(here they are more confident and funny- money must make you feel that way)
Let's face it, Crohns has to do with " #taking a dump. " And your intestines. Which still eek me out.

Remember that old western movie where the Indian takes the really cool cowboy's intestines out and let's him die while the ugly looking vultures pick at his innards, then the enfamous Indian goes off and shoots an arrow into Gus' leg?

Yeh, it's that sort of "UHHH....tragic" that people and friends stare wide eyed about. They see intestines about the ordeal and need time to get used to it. Maybe give them a copy of Lonesome Dove (I just recalled the western movie I was referring to up there. It's been several days and I am editing.)

 I am being funny here, sorry,  it isn't as easy as how it was when you were healthy, went to the bathroom, one or two dollops of feces fell from you and you went on with your life. You never thought you had a bum hole until it was riddled with disease and even if you sneezed, it hurt.

Maybe that was as scary as a toddler being potty- trained they need a book on it, possibly a video like the one my nephew is now watching, and then they have the courage to watch a part of them leave.

 When he finally pooped in the toilet, the picture of his head in the toilet, checking it out, was on FB befor you could say: "potty."
(Uh-oh. Now they are getting really into artsy here...)

 No, when we Crohnies go to the bathroom we leave part of our soul in there. Literally. I have had moments that have been so excruciating, or possibly so draining, that I thought I would pass out. Actually, I have passed out.

If you have had the disease a long time you are able to use medical terms and verbage that is Greek to your average high ASAT scoring friends. - They will just sit wide eyed as you explain how the duodenum plays a role in life, and then get a glazed over look to endure how long you talk because they have never been on prednisone and you are talking at the speed of light.

The humiliation, if you are still working on caring what others think when you have flushed the toilet 12 times to give the others in the department store a break and to mask the noise that you make when you are going, is something you can get over.

  At least that's my trick or service to mankind and I have gotten over it in some instances. But it is still something that the average person doesn't even think about. And they shouldn't have to. Unless they are potty training a child. And then the topic can be brought up.

(Getting in better shape and that means ya gotta show more skin, right?)

Or they come across my blog....

Fortunately, I enjoy meeting people and that means an endless line of potential "friends" and I have  educated those with me and myself about Crohns, I understand- It is serious and now, after twenty years of immune suppression I am finding out just how serious and ugly it can get.

It doesn't cease to surprise me. And if we are surprised just think what the average friend is thinking.

 For example, I didn't think I would be fitted for a Victorian looking shoe orthotic because of what the disease and the prednisone did to my ankle,

 thus making it more unstable and hurt worse when I have to use it- which I try to at least every day. Bed to Bathroom on bad days. And then I have to strap it into a boot to keep the muscles from shrinking and pulling the feet back..

So your friends think you have a stomach problem and here you are wearing a boot and driving the scooter at Wal-Mart. It's confusing.

Another helpful coping strategy  to do when in dire need away from home- I use the handicapped restroom so I can lean on the rails. My blood pressure can drop, during this Gethsemane trial.

 I have dropped in the bathroom a couple times. Once at a Jazz game while preggers.

(I am a fan. Not to any particular team because I have been sick and couldn't watch anything so my fandom was really sparse. But we were huge local HS fans. J. and I before I plummeted.


Perfect place. We had free tickets and a date night.

All I could think was: "just get your pants up, just get your pants up. And I half way did while opening the door.

The tile was so cool on my flushed face that I, a germ a phob in the making laid there while a woman kept trying to keep me awake. J. was still in the oven at 8 months so it was critical. The ambulance ride up to the UofU was the highlight of the evening.

The firemen deemed my low blood pressure too low and I had to miss the game.

Where was I? Oh, giving a tip to my friend who wanted to know about losing friends and how to not.
Lose friends.
One last shout out to the rails in bathroom stalls!

So rails, cloroxed first, are a good support even if you don't pass out. I love rails. Thank you rail people.

Other, non Crohns Readers, this is not what the person wanted to know how I cope with. She/he wanted to know how to not lose friends with this disease. Sorry I got derailed on the topic.

 Maybe you can answer that question better than I can. Send me comments and I will moderate them some time this summer when I feel better.

(Pretending to eat. Right now I can't so it's fun to look at food and I appreciate this Friends photo.)

Maybe losing friends is because they think that we could be carrying an infectious disease. Maybe they think we are faking it and are just annoyed hearing us rattle one about things like enemas and bowel movements and which brand of baby cream they should buy for their baby cause you have tested them all (just make sure it has zinc oxide in it. Equate brand is just as good as any I have tried.)

(It's a jean thing.....)

 Maybe they are busy doing what normal thing they should be doing and that is raising their kids and making dinner and going to the grocery store and we only notice their absence because our ability to do those things has stopped; we have come to a stand still- so we hyper notice their absence.

I believe in being pro-active in our situation and making the first moves; reaching out to them. I learned this after my divorce. I felt like a leper. People vanished when I walked into church. And then again some people I barely knew were there helping me clean my house. They may have wanted the gossip, but at least they were there.

Swallowing your pride and asking help from others is critical with disease or we don't make it.

(Jennifer Aniston smokes cigars??? Gosh, no wonder Brad Pitt left her for Angie 2 have kids)

 Letting them know it is okay to interact with me; that I won't take offense to their questions and if they do ask something odd, I will be honest helps them and encourages them to talk to us.

The first thing I learned with this disease was I had to have a sense of humor. "The Torment", which is the name I use in my blog for my older brother who teased me as a kid and just last week, helped me learn this after my first surgery for Crohns.

We were all at the table and I was able to come out and I was given a donut (not the kind you eat) to sit on. We have a family of funny people so the jokes were tossed back and forth like a ping pong game. They were so funny I WAS laughing and then that made me hurt and then I was crying. And when I say hurt, I mean HURT. I think it could fall into the lines of having your intestines pulled out and left for vultures to eat, hurt.

(I never knew there was a Space Shuttle episode. Does Houston know I have a problem with that?)

Educating them is the key. Telling them straight up: "Hey, I"m on prednisone so when I turn into a Werewolf tonight or any part of the day just be aware.," I've found this is a good heads up.
But even then they will not be prepared for your happy crying and then really knick picky personality when it comes to washing hands when the flu is going around.

 I've found I am different on prednisone and possibly they don't like the way I speed talk and don't want to speed walk with me anymore cause I take all the time talking and they have had more of a mental work out by being with me than loss of calories from walking.

(When you are young and have friends, you always whine to have sleep overs. )

This illness is all over the board; It affects so many areas;  One day you can be bed ridden- paralyzed by Crohns  and thinking about the good 'ol days when you could actually function, and then, with the flip of a light switch, you are on so much prednisone you are over to your friend's house cleaning out her sink just because you have cleaned your entire house with a Q-tip and found yourself with some extra time on your hands.

My point:

I just don't know the answer.

Everyone does things differently.
And illness is no different when it comes down to how to keep your friends.

(I never knew the cast from Friends tried out for George Clooney...)
One way to handle the loss is to find new ones. Put the old ones on hold cause you will still need them and want them.  but believe me, new ones will come out of the wood work if you work at trying to be a friend to others and find out about their problems. Because this illness can teach you empathy if you will let it.

One such unlikely friend was recently diagnosed and dealing with a MAJOR life changing illness. She has lost everything; a business, the ability to walk at times, talk, move, take care of her kids with the help of her husband. The list just goes on.

Moving out of the dream home and back to the city where parents can help has been the result of this insidious trial. However, 17 friends came and cleaned the other day while we sat by each other at a Norwex party. (you get invited to and you throw a lot of parties when you get sick it seems like- that might be their way of reaching out and your way of dealing with being sick. Or maybe sales people really can work on those that are sick in ways.  Ya can't judge their efforts)

(One thing is for sure, to keep friends, ya gotta have fun. And paper-mache, underwater basket weaving and painting are all good ideas.)

We (my friend and I) leaned on the same pillow and barely talked. Both of us had legs that needed to be propped up and I had to leave early. Which made me sad cause I wanted to talk to her because she is moving and all the hopes I had of learning how to do some things she knows how to do; can't happen. At least not on the time table I had set.

That is the hardest part- the loss of 'what could have been.' And that is something worth giving yourself time to mourn. It, in a sense, is a death. A death of a future friendship that could have been edifying, fun, blah, blah, etc. etc. But once you have mourned it ya then have to move on to the next friend God has waiting for you. Unless you are on
(If you sweat a lot on prednisone, stink, or are going through puberty; take a bath or ask for help!)

prednisone and then the rules change because it MAKES you think of your life and you pull out memories and re-hash them.

The best "advice" since I am acutely aware of losing friends is:
 learn to be alone and like it.
Like that one huge Broadway production where the guy somehow wears a white mask on half of his face and gets it to stay on.

(If the real Phantom was this hot, he'd have himself a good lawyer and could have lived upstairs)

He is ugly from some scarring.

And not from prednisone or Cushing induced acne!

He is socially backward- from living in a canal his whole life

and before that being in a circus or something, and now is writing songs and teaching a girl to sing from the heating vents.

(And she happens to be the cute one of course. Even Phantoms have favorites.)

Oh, and he's killed some people.
It just isn't in the cards for him to be friends with the people that live upstairs without some serious consequences. So he gets put on prednisone or something and tries to date the girl he is teaching to sing, and ends having to go further into the canal because he can't get the killing thing under check  and so he escapes police but has to now write for rats or something and the cute girl marries the cute guy.

(Christine visiting her father & friend. Wishing You Were Here.)

And Phantom despite no doctor visits and living in a damp area lives to be 100 or something.
His secret to good health, despite all his trials, leaves a rose on the grave of what's her name.


Sounds strange, I know.

 But everyone has to come to grips with their life whether they have a disease that is one you would trade in for another, and we have to be at PEACE with ourselves.

Listen to this horrible way I was a friend- I had a friend who had cancer. The last phone call we had together was when I called to see if she wanted to come to a Pampered Chef party. (notice the pattern her?)

I noticed the weakness in her voice. And she said she "physically" couldn't make it. I could barely host the party so I totally understood.

I didn't hear from Steph again. I was busy being sick and then moving to Utah to be closer to doctors and one day my mom called and told me my friend had died. I felt sick. I didn't tell her good-bye. I didn't call. I didn't visit.
In my defense I couldn't even lift my head off a pillow at one point and the phone was upstairs. My Dr. couldn't even get ahold of me. It was bad.

Image result for phantom of the opera leaving rose on grave of Christine Daae pictures

That is my # 1 coping priority: A CELL PHONE. Without it you are dead meat. And just as stuck as Christine when Phantom finds out she doesn't like him quite as much as Raul.

She was married but had to move home for her mother to take care of her. I went over once and it was hard for me to even drive with my arthritis... she was holding her husband's hand and really just talking to him and I knew she wanted every second she could with her family.  She was tired. I was tired.

(Anne Bachelier's Christine; Phantom of the Opera. I'd buy it.)
So I made the trip home to her funeral and said good-bye then.

There is a saying: "You find out who your real friends are." and we say it when something happens and some of our friends disappear. It's happened to me. I have gone AWOL on some friends simply cause I couldn't 'get to them,' So that saying isn't really true. To an extent it is simply you find out how to be real with your friends and yourself; you learn that life takes unexpected turns and you can either pout, and keep pouting. or pout and then move on.

It hurts. It does. I'm sorry you are alone in this, that you lost a good friend. It hurts so badly to feel rejection, in all its forms, when you are healthy let alone ill!
You wonder what you did or if you did anything to make them disappear. Then you think of all the possible reasons and that does you no good in a flare.

(Anger and jealousy makes the Phantom break a chandelier. He can afford to replace it. Some engagements make a person mad. Have I told  you Readers I have been engaged four times? Three times to one person? Yeh, now I know what happened to my body I see why he had cold feet and then I had that gut feeling.... and it turned out to be right! He is happily married and has children. I didn't know J. would need me FULL time. So it worked out best. And I am still friends with my engagement ex-s All is Well. So cry. Take Ibuprofen for your sinus head ache if you don't have Crohns. )

Keep in mind that you will have some friends that you can not talk to for a year or so cause they are on a different continent and they come and visit and you just sorta pick up where you left off.
That has been my experience.

But if they don't ever return and you don't pick each other up and they have left you ticked off don't break anything like Phantom. Try watching the movie instead. Especially if you are dehydrated.  It helps.

Being unable to reach you, Anonymous Commenter is why I blog. I know suffering. I now know there are others out there that I could help. (I have read more Amazon reviews than I would like to admit and I have found some seriously good tips for the sick, lame or just lazy)
Oh, I blog for my friends, neighbors, complete strangers, and other Crohns or Cushings suffering folks.

Padre thinks I am setting us up for ISIS to nail first and given the government all our secrets. I re-assured him they already knew he wore flip flops to the shower and has never gone bare foot.

Blogging also helps you as your friends live because I am sick and I don't want to be a high maintenance friend. So I am just high maintenance.

Financially speaking. (some meds are as much as a nice car. sigh. sorry United States of America. Thank you, thank you , thank you.)

AND I have J.

I have to stay alive for him. He is numero Uno. Which makes it that I need to take care of me first. Which would make him look like he was numero Segundo. 2md but he is first. It's like the airplane advice if it is going down- put the oxygen on yourself, then your child; pretty hard for a toddler to put one on if mom or dad or the adult is passed out.

J and I have talked frankly and he is cool with "it" and knows that when I am at appts. and he is finding an almond butter sandwich nowhere to be found and settles for bread and jam- I am working. I am working a job higher than a real one: The job of being his mom. At some moments that is sitting on a hard chair in the Dr. 's  office or driving across town to physical therapy with Padre. Which, P.S. those days are over, Readers! I am on my own! Padre graduated!

(Mary Philbin as Christine Daae. I didn't know Mary, we were not friends. Well she died before I was born. But she played Christine and had a lot of friends)

Okay, back on topic.

Whatever is going on with your body you have to find a way to cope with it first. Friends or, no. You have to take care of YOU first. If that means making new friends or calling new doctors, trying a different approach- plug your nose and jump in.

I think in the post:" Today Part II"-  that I wrote and you responded to illustrates how I missed my son's game.  Actually, I saw him bat- once. And then I had to take care of me- I had done my best and now I had to gauge my strength and knew I had enough left to drive home.

Getting him there and then getting his pants, which my mom actually got in several sizes that he tried on and found what fit and then I tried to return; maxed me out.  It got done but barely.

And I paid a hefty price. To top it off I scared a woman whose husband has Crohns bt looking like someone who needed to go to the ER.

(The Phantom of the Opera in 1925- heh, heh)

I was in a wheel chair up at the cashiers desks, sweating profusely by the way (which you Readers know that is my favorite Crohns and Cushings side effect), red and acne faced, shaking and unable to walk, drinking water by the cup full, until I stopped shaking.

It wasn't what most Kohl's cashiers or customers see when they first walk in to grab a cart and start spending money. Once the shaking ceased and I could get my wits about me after the bathroom evac., I left and vowed never again.

I knew I was risking things when I tried to do all of this after 5. I know my body.. but forged ahead in the name of independence!

Below: Leading Lady outfits for The Phantom of the Opera all by Giuly RedRose.

And for J. He needed to look sharp for church when he was to be pass the sacrament.

Which leads to another coping strategy I have; God. I have a strong belief system. I know that God provided me with a Savior that suffered my ailments before I even was born on this earth. He knows how to help me. And if I am living right, praying, trying- he answers eventually. Or at least gives me the strength to go on and show my face in public. Re-introduce myself to people that don't recognize me.

Another coping tip: Hydration and healthy foods. You most likely won't absorb a single thing but at least you tried. After Kohls I hit DQ for an orange Julius, and slowly drank ,it to avoid brain freeze, in their parking lot. Then drove to the ball park to watch my son play for twenty minutes.

(Now this is a Phantom that would make an Opera singer hit high notes out of fear)

Maybe people who saw me years ago when I could go to his games and coach  (cause I was on prednisone) are now wondering why I am such a lazy mom? (The prednisone took my body over the edge of too much cortisol levels for my life time I guess. But it was all we could do, I guess.

When actually they are just trying to keep their kids from falling off the stands and needing to take a kid with a broken arm to the ER.

Honestly, that is what it is. Family. As the years go on, I have seen my mom have distance with her friends and it is simply because she has a large family and a daughter that is almost 40 still living in her home and she is helping raise a grandson. It's not the typical family setting but as time goes on, kids still at home is on the rise.

Whether kids living with their parents is for illness, financial, selfish reasons, it is on the rise.
I have neighbors and friends with their own health problems that I can't get to them because of my own health problems. Heck, look how long it took me to realize I had comments to moderate.....

Think of Me
Christine's debut

You are on my mind. My mind just has to prioritize and it starts, unfortunately with me. Take care of me first. Which means I am banging down Doctors doors to find a cure, or answer to what is happening and I am finding that doctors are still " practicing" and what they do for and to me is really just a stab in the dark.

There have been times I couldn't talk. And a note on my hospital door had to read:
"No Visitors, Please." 
"Vintage" Broadway Photos - the-phantom-of-the-opera Photo
Thankfully, I had an Uncle come just at the right time, ignored the sign, knocked on my bathroom door and carried me back to my bed! He was an answer to my prayer! I needed someone who loved me to help me.
I had just lost most of my innards and was leaning on the rail
 (I had e.coli- watch out for that I've heard it can kill ya. It spontaneously can happen if you have Crohns. Sorry.)
and I was weeping. At first I was feeling like: "Oh, great. I am on the toilet and my great uncle is walking in and pushing passed my IV pole.

I had difficulty wiping and he gave me privacy but he got tears in his eyes cause he lost his wife, who had diabetes, when  she was only in her early 40's. He's been alone ever since. I have rarely visited him. And I loved his wife. She was so nice to me and she was the first person I visited in a hospital that was in it for a longer time than having a baby.

It easier to read a letter for me than talk at times, And I mean snail mail. I can't log on to the computer at times. <y son will text for me at times. But I try to write to people and email.
I have lost the numbers to some friends.

When I was so sick- I got off FB and apparently missed out on all that life has to offer. Two people I knew had passed away and I didn't know until a friend or neighbor pointed it out to me that it had been in the paper. How sad is that?

I hope I answered your question. My friends- my friends from years ago- I know care for me. I know because I have heard and seen them care for their families and husbands, neighbors and fulfilled their duties in our church. That is the nearest their arms can reach and that is an answer to a prayer.

Their prayers for me are answered by people close in proximity to me- whether friend, or stranger, or whatever. I have felt that they were the answer.

In all Sincerity,

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