Wednesday, March 20, 2013

What to Wear on Prednisone-Pictures of Prednisone Belly and Moon Face



(Okay, I couldn't even put such a negative selfie on here without another to off-set it. My, my. How vain and proud we can become..... and how quickly prednisone can steal what we thought was beauty. )




On prednisone you may consider a tarp, burka, or a bag over your head and a poncho.
Okay. Kidding. But you feel like it. And maybe with a belt and decent make-up you could pull it off.
 
 
 
Okay, I know that there are millions out there that wondering and will google: pictures of moon face on prednisone. Or picture of what prednisone could do to my waistline. (Waistline? Don't waste your time! It all becomes one, big delicious Idahoan Potato. Really.
 
See:

 
The picture above is after a full day. So that includes errands and appts. and raising J.
I wanted it next to what I "normally" looked like on this blog pic so you could see the change; so I could. On prednisone or with Crohns, I should say, I get red blotches on my face and other areas.
And the harder I work, or worse I feel, the more red. So I really appreciate make-up concealer in a lighter skin tone to TONE down those rashes.
 
 

Let's look at it again. hmm. the rash is on my right cheek and chin- if you can notice.
 
The double chin is there along with the Charlie Brown Round Face. And classic look J. must be used to by now. ?
 
Who knows.
I even started this day out with the works. But it ended harsh. (See last photo)
Being sick is devastating. The top photo, where I am minus the buffalo hump on my shoulders and back, minus the chin and huge potato middle; I am sick.
But you can't tell.
 
You can't tell that I am hurting just as much or more. That the possibility of fissures is lurking. That I am going to the bathroom 20 to 30 times. Except that I might be a size 4 or 5.
 
Let's look again for my sake.
 
I've been sicker and a size 2 but I wasn't holding up a camera at those times. It would've been too heavy. But people thought I was healthier.
It's easy to take for granted being able to wear clothes you have and look good. That is a blessing and I appreciate the compliments at these times- although underneath I felt like a fraud. When I see models that are so thin I imagine it must be Painful to be that thin because it was for me.
I wasn't trying to be anorexic but it looked that way. I was eating. I just couldn't keep it in me.
And sometimes I couldn't eat and abhorred even looking at food because it hurt so bad.
So, inadvertently, I was anorexic and got the facial fuzz, the hair falling out. Maybe it was cause of the flare.
 
Again, make-up color can hide the shallow, gaunt. The purple-blue under the eyes.
Thank goodness for those things during times of duress.
It's important to take care of the little things like that in order to keep from falling into the pit of depression.
 
Back to my middle/center picture. Again, I will post it so you can don't have to scroll up.
 
 
 ***Note how my decadent center is almost flush with my now 38 somethings bra size. Yes, I went from 34 B to bodaciousness over the course of a year. Not as cool as you would think. Because this redistributed body fat to your trunk makes it hard to BREATH.  It sits or lays, on your lungs, I swear. And makes you wheeze and suck wind all the time. I swear this drug is so dangerous. Less oxygen= heart workin' harder. Which puts you in there with the heart attack folks, I guess.
That's my "gut" feeling.

You don't die from Crohns. You die from some infection from being so immunosuppressed. Or you put on so much weight right THERE that you have a freaking heart attack. That is my opinion.
 
 
So I am going to include a Fashion tip here.  That Navajo lookin' belt was a small penny at Target. It's S-t-r-e-t-c-h-y and flat. Which is what you want so you can wear shirts and have a seamleass look.  Along with the pants. Little give in them. You'll need that in order to bend over and breathe, too!!
 
 
 In order to get some REAL professional opinion I had to check in with one of my favorite fashion websites.   Almost too afraid to go to one of my favorite blogs:





 cardiganempire.com, to verify with Rachel Bagley, a color that might look good on me and get some serious style inspiration.  I covered my eyes and typed in her site.
 
However I covered them like I was shading my eyes from an eclipse, I was so scared to see all the cuteness that didn't include buffalos.

I typed.

Fashion Goddess, Rachel, has put blogged more about skin color and I found  am a warm and fresh light spring.

I think.

Where is Bagley lady when I NEED her help?????.  AAAGGGGGGGGHHHHHHH!!!
 
Then I went to the body shape section where she helps you to determine what fruit or vegetable shape wise you are. 
 
NO longer mythical curves.

Yup. That was the only one that wasn't an edible item.
 
 I am now "soft and delicious",  expressed in the shape of an Apple.

 
 
 I hope it's a Fuji Apple.
 
I looked at some things. Got some ideas..... sooooooo important and THEN found this woman's blog:
mommagoround.com
 
You can feel the love just in the name, eh?
 
And she is this amazing plus size gal that shops on a budget and works like superhero on a sewing machine to FIX things on sale and make them look right on her. huh. who thunk? Nina, the sorceress of clothes shopping loves old Navy and Target. And you should SEE what she does to some of the clothes to take them from, meh to MAMA MIA!!!!! Let me EAT that it is so cute! It takes some craftiness.

Like scissors. Thread.
 
Most important:


(Seam Ripper. Don't go crazy with these as you take out seams because you may want to use that thread and go back and fix it once you lose the weight. Comprende?)
 
Impressive. ALL on the cheap. Cause who can afford anything right now? And what if you don't stay a Fuji Apple for a long time? You gotta shop thrift. Get creative. And this girl got my head spinning with some fun ideas....

 
I took an old Target shirt and was able to make it bigger by inserting a cute hankerchief. I am debating going all around the bottom with the doily, but you get the picture.
I even added it to the top because my cleavage is pretty, well I finally have some. And I don't like it to spill out THAT much.
 
 
The ruffle pulled it all together. Even with cami, or whatever, it adds some cuteness and pulls the eye away from that center.
 
I'd already put the seam ripper into effect with a couple of my other shirts. One was an Empire Waisted shirt that was a little too tight. So I released the band so it could be adjust by the tie alone.
 
 
Coupled with a cute cardigan, this was just right for a day of errands.
 
Another shirt is this blouse that was really popular in style a few years back. But it only looks good if you are skinny. You don't want your gut blousing out with it. But I noticed A LOT of bigger sized ladies would wear this style.
 
 
So I released the tension in various spots at the top and then took completely took out three or four rows on the bottom. Now it hangs instead of hugs my apple.
 
 
But there still is some shape there. And, yes, you will have to accept and love that your center will be front and center. You can't hide it all. And that is the part you and I have to accept. (and accept that hang nails don't heal well on pred. Hi, bandaids! )
 
In my circle I am blessed to get hand-me-overs from friends and family. In a variety of sizes.
I made the mistake, once, of getting rid of some things thinking I'd never get THAT big again.
But as luck would have it! They say to dieters to get rid of anything big because of some psychological leaning to go back to that size.
Baloney.
 
You will save yourself time and money if you file those sizes away for a rainy weight.
Unless you are fit as a fiddle and don't have to take meds, lack space and can't hold onto all those extra clothes, then you need to make that decision. All I know is when I have reached some of those higher numbers and have some of the "basics" like skirts for church- oh, bay-be am I relieved.
And they are usually clothes from others that I felt I better hang on to.
 
 
Finally, my foot. Yes, after pushing yourself to more and more walking, running, weight bearing you may end up with this:
 
 
Swollen, bruised areas on your lower appendages.  I get them along my shins, below my knees the most. The skin is thin on prednisone and shows areas where inflammtion is happening.
 
Wear good shoes. Back off pounding the pavement. Wear shoes on the Tread Mill, even if it is a short stint of three to four minutes. Thank goodness the weather is getting a bit better and we can walk on the edge of grass. (This really strengthens my ankles).
 
For now, we will rest. Do 50 toe ups. (Stand next to your dresser and go up like a ballerina but stay on the ball of your foot. Hold it, then slowly go back down. This helps the circulation in the legs!! Better than putting them up in the air and having it come back to your face!
 
These are the things that I wanted to help  others with today.
It's been a post I've worked on over the course of several days. Debating whether or not I should let you in on what I'm looking like. But I know it has helped me to see others in their rainy moments and some of the tips I've gotten from them have been life savers for me!
The biggest is seeing them smile despite the loss of their original looks; to see them become those Renoir paintings because their true beauty shines through and you don't see the outer, you see their spirit.
 
M&Ms burned yesterday and today had to put me up in the 200 range. Ran errands and went to appts.
I will try to do 20 minutes straight on the Tread Mill tonight. See how it goes.
 
 
 

Monday, March 18, 2013

I am in love with a dishwasher



Remember how I said I love to hand wash dishes?
 
Well, I do.
However, when Madre announced that she had a change of heart about owning another washer--- I about wept.
 
(There is no room to put it in cupboard space that is already needed. So sometimes it would sit in the middle of the crowded kitchen 24/7. And you would have to shimmy and turn and it was not. worth. it. Sooo..... we all learned to love washing by hand. )
 
Some guests would arrive and wonder: "Are those all your dishes?", after a large gathering.
Or some visitors would look over at the counter and want to offer to help start up washing them, but became discouraged by the amount.
 
That is when you really had to dig deep down. Start with rinsing the dishes until they "looked" clean. Then clean the sink out with clorox. Scrub. Scrub. Rinse. Turn on scalding hot water.
 
Pull up the black stool and put on your gloves.....  
 
Grab that first glass and BEGIN. ENDING with the wretched arthritis aching forks.
 
No more!!!!!!
 
Yes, I am in love. I am happy. Madre worked her magic and arranged the kitchen to fit our new friend who I am sure to love and thank many, many times in the coming days.
 
Could life get any better?
 
Sure I can still hand wash pots and pans and wooden knives! But Whirly will do my forks, to which I owe a huge amount of debt.
 
Jaden will learn to load a REAL dishwasher! (It made Padre nervous when J. would hand wash the dishes. He'd be worried J would miss a spot or something.I did all the time! Ha! But not on purpose.
Now we can have scalded clean-all-over dishes to Padre's delight!
 
Changing topics... I am going to start putting down my M&Ms burned to date on here. That will be fun. I was under the impression each were 11 cals. So that's what I have been calculating roughly on the Tread Mill. I joke when I say I burned a couple. When actually I burned 10 in that "sitting".
 
The reason for this misunderstanding of the calorie count I believe was because I was on hold waiting to talk to someone at some important establisment that had a woman say that one of those little bitty chocolate goodness-iz was 11 calories and would take walking the extent of a football field. I think there and back. It was football season. And lugging all the gear you need for a game has to chip off some of those cals.


(here is one of my middle of the night projects... writing down J's baseball practices. And finding a very cool poem in the hallway drawer while I was trying to find a frame.)
 
As I waited on this important phone call I recalled all the times I ate M&Ms. I never took just ONE.
It was more like a scoop from the bowl and trickle it into your mouth. This left me horrified. And I wasn't even bloated on prednisone like I am right now.
 
So- we will continue with our 11 cal count. I should post how long it takes me too. But that would be to personal. As would telling you how many calories, converted into M&Ms I eat in a day.
 
It would shock me. And we don't need that right now.
 
So. I have to be around 150. Since it is fuzzy how much, I am choosing to say 150. Won't this be fun?
 
Will this build rapport with my dear Readers? Padre was having a class the other day in his office and I walked in to ask him something- the LIVE instructor said: "There is nothing FLUFFY about Rapport."
 
Empasized on his screen with a big circle and line through it.
 
I had to go look up the word Fluffy. And I wondered why the instructor just didn't use it's synonym.
Because how many pictured a bunny just then? Was this for real? I had to leave the office.
 
I am almost ready to leave this computer. It is early. I am fighting prednisone pain. UGH! So I am up blogging. When I should be pacing the halls. Because my hands are starting to get kitten-ish. Put on a pair of mittens and try to type and you will know what I am talking about.
 
But there is more! Remember the last post? When I needed to know what my end result/goal keeping purpose of life would look like?
 
A neighbor kindly showed me.
 
Like Renoir Paintings... explanation: later. I've got to do some pacing.




Saturday, March 16, 2013

Goals. small. goals.

I've always believed in setting them. But, at a point over the years I starteed to believe that I couldn't make any with my circumstances.
Say for instance completing my degreee. 3 or 4 times I got shut down.
Even in looking at pictures or "rating" my health from various years or days or weeks- it was impossible to  quantify it. I guess that is the word I'm looking for or fits what I am trying to say.

It is more like walking down an escalator at the same speed it is rising and just staying in the middle. Or worse, working hard core to not even keep up with trying to make it down the steps and moving upward.

As I write this I think of J. and his desires to accumulate money. He doesn't want to fiddle with the pennies. I encourage him with smashing his cans to keep doing it because at least he has one more penny than he started with. He'd rather wait for the big job that pays the big dollar bill.

As I try to fulfill my goals it feels like these pennies. Small, non-earth shattering progress. In fact, sometimes I am busting it to keep status quo. Earning or seemingly going no where.

Like the Tread Mill. I'm walking but it isn't taking me anywhere. I am still in the same place.

So do you stop? Stop making the goals because it doesn't move you forward?

Unless I wanna go backward, I gotta keep trying to go forward when all it ends up being is facing forward.

This probably makes no sense- but my goal is to keep writing. Whether I feel it, or not.

Documenting is my goal.

On another note, last night I had J. take a pen to my toes and touch each one to see if I could feel it. Yup. It sent lightning like shocks when he touched the tip of the pen to each toe. I'd thought they were numb. But they are ultra sensitive. However it was a sharp pen.

So it's just pressure from water retention. And slowly. Slowly I am coming off the cause of that. Which is another frustration. half mgs. longer weeks. I don't like that.

You can't do crunches very well with a double chin and prednisone "redistributed belly fat" very easily. It just gets me laughing. Then wanting to cry.

So I gotta revamp how I look, quatify or measure my goals. I need to rethink what I believe Progress is in my scenario.

I'll update when I figure out what that looks like.

Tuesday, March 12, 2013

3 Miracles in ONE day!



Whoa. If you read last night's post you know it was a long night. Wait- let me read it again....
 
So today I find out that I get a great referral to a Dr. here in I.F. to help with the prednisone taper, etc.
 
That EIRMC is now certified to do the infusions of my particular drug, here, in I. F. BIG thanks to nurse Sonda at U of U Hospital for going the distance for me and others involved. She is top notch and an inspiration of what hard work, professionalism and empathy is for a nurse. If I were one, I'd want to be like her.
 
And last but not least- the La-Z-Boy chair that faded, was returned by the older lady that still had it under warranty, to the Preston outlet and the amazing deal I got for it. The saleslady said it must have happened for me.
 
Get this...... it is Buckskin, JUST like Padre's. But has a few imperfections for whatever reason. It is now in the basement.
 
(Background info for Readers. This chair is a chair that is perfect for your arthritic back. Whether reading, sitting, needing to sleep in it. It is just heaven. Often I would sit in the same style at my Grandparents house and every time I came home from the hospital or when I was really struggling I had the wish in my heart: "I'd kill for a chair like that." I even wanted to save my money to buy me a chair like THAT because it was so helpful and kept me aligned. And then Madre got a great deal on one from the Preston store and Padre's gift for Father's Day came true.
 
They are made the same year, etc.  So the two chairs must have been brothers. Except this one was defective a bit. I will take it!!!!!!!!!!!!! So buy stuff in Preston, Idaho.
 
And I will put up the serial number on here so you can know what is the best chair for arthritis suffereing!
 
J. called dibs on the old chair downstairs because the wear and tear on it resembles the "Buffalo" look. And that is the theme of his bedroom. Ha.
But he will keep it in the fam room he says, next to Buck. Aren't we so Blessed?
 
If you are curious about Wegener's Disease, I found a great blog that talks about it and bringing attention to auto-immune diseases in general: weggiesunite.blogspot.com
Not "wedgies",, like I kept saying. Marta is an awesome gal who came down with this sudden disease that has prednisone on the menu for her care, too.
 
She is also the one who came up with the T-shirts. However, I'd have one made up that you could write with a dry-erase marker how many mgs you are on so others could have a heads up on how much longer they need to deal with you.

I Am Not Ashamed- Prednisone Rant


Wellllll, actually I am. I am ashamed of my moon face. I don't like to look in the mirror and I don't want others to see me like this. Tonight while talking to my mom in the kitchen I got a good reflection in the microwave.
 
But this is what I see in front of me tonight when I had to tread a few feet and burn two M&Ms: My mom's little scripture mastery cards on the Tread Mill. It is in Romans... and I can only keep saying the first line- I am not ashamed of the gospel of Christ.
 
But prednisone isn't the gospel..... or is it part of my understanding of it?
 
Yes, I am up. Prednisone Insomnia.
 
Note to Dr. who I can't get into until April- sleep med not working. If you read this. And not that you can do anything about this but I can't feel my big toes. Sort of. They tingle. Feel like lead. My hands too.I feel like someone has wrapped floss around them really tight and they just may get floss bitten and fall off one of these days.
 
 
So I sat up and went in search of someone who can relate; forums where we Prednisone ranters complain. And I am put in check by a few of the stories that give thanks.

So I go walk, barefoot, in the middle of the night, to get through a few more moments on this dang drug. And to buck up.


(Shameful feet, eh? I imagine I'm Bruce Wayne climbing a Mtn right here.)



 I read about a gal that has been on prednisone since she was 12. She is now 31
 
I will admit that I have laughed at people who have bemoaned being on the drug for a few weeks and gotten onto a forum and let loose.
 
"oh, boo hoo! wah, wah! A week on prednisone!"
A couple months. Sob.

I am now in check.
 
The poor girl is younger than me by a bit, hasn't had any weight gain however- but she can't eat, really.
 
(I really can.)
 
She mentioned all of the problems the drug caused to her bones. Hip and knee transplants... Total disability at 31. Stays with her folks, too. (doh)
 
Described the weight distribution on the trunk and moon face even though she isn't very heavy. AND then said she was as hairy as a
Gorilla.
 
Readers, non- prednisone using readers- sorry I have written a lot about this lately but it is A LOT about me. When you are comparing yourself, and it is a pretty good assesment, to a gorilla- you aren't in a good place.
 
A zoo would be better.


Another person ran with an idea of  Prednisone shirts and has come up with several good ones....
dang it. She has Wegener's Disease and a good attitude. And a 3 year old at home who wouldn't recall her if she were to pass early. Which is staved off by a cocktail of chemo and prednisone which keeps her alive. And she is HAPPY to be alive. So she made some funky shirts that bring attention to her rare immune disease and has a section on prednisone.
 
This made me shape up and made me feel a tinge
 
 guilty for indulging in one person's Pred rant riddled with swear words. (she really did deserve to swear)
 
But then...... a young lady posted about how prednisone saved her life. Sje is young, had an organ go ker-plunk and was on huge amounts of the Beast. She told how kids at her school made fun of her and then she realized she was alive, what was on the inside was what counted.
 
Dang it. I hate when young ones are so wise.

Where is my gratitude? Have I forgotten who I am????????????????

And who am I?

Not Batman/woman.
 
Although I'm sure he has great insurance and Fox could figure out a cure.
 
I am a
"Hobbs".
 
The Elk reminds me.
 
(I put in backpack for inspiration as well. So I can look at it from here:)



The equivalent of my Kilamanjaro. My Denali. Where I work off a few M&Ms in between switching loads of laundry. And resting. And going through the mental torment of Prednisone.
 
But I am more than just my name....I am so sorry I have been ashamed. I have a body. I am alive. I need to hold onto that. But, like, Mammoth Depression said in her rant on a forum: It's really hard.
 
Dang hard. Nothing has been this hard. The physical is one thing but what your head tells you about what others think of you. What your family is sick of dealing with, with you being "sick". The burden that you could possibly become..... these are real fears and are what keep me going.
Sometimes. The rest of the time my glands are trying to figure out what heck.....
 
So I am ashamed, still. And maybe, just maybe- I will somehow find a way to let the gospel pull me through this........

Monday, March 11, 2013

He Doesn't Remember? igland idea





Sorry to post twice. The first was simply thinking aloud. This time it is to get rid of to let go of some pain.
 
Tonight as we talked- J. and I talk still do that at night. But some of our routine has been wiped out.
 
I used to sing. The same songs, in the same order before he went to sleep at each nap time and then at bed time. I'm sure you all had that phase out. But I liked finishing reading out scriptures and books then leading into the songs. It calmed me too. Where did my lung capacity go?
 
But tonight when I asked about a particular bike ride- he could not recall it. We went on zillions. Me with my orange cruiser. Before they were popular. He became mobile with the help of a hard seated little bike minus the shanks.
 
A trip down to the gun shop down town. (he picked the destination.) He padded the little skeleton of a bike into the store to the chagrin of the owner, patrons, and his mom....
 
We then went Parisian-esque to Great Harvest and got bread that we ate under the umbrellas.
 
He was saddle sore. And you would be too if you'd seen his seat. So we were picked up.
 
We came home, traded out bikes for the one with the pedals- he wasn't out of energy yet and he rode down the street by himself.
 
He was mobile. It was the first time in his life that I felt he was "off" and on his way without me.
 
I was majorly tired and burdened with the burdens of divorce.
 
But we rode.
 
Kids aren't supposed to have Alzheimer's moments! The bike ride I eluded to was a blur to him,, but are so vivid in  my mind.
 
Those times are all jumbled in a blur to a child. But tonight, when I referred to the ride, and he couldn't recall it hurt me more than I expected.
 
Why?
 
Was it because so much  went into those first few years of his life? So much heartache and sleepless nights, worries and sacrifices over so many things?

And the kid can't recall any of it?
I should be glad that those things- those worrisome things were, as planned, kept far from his little mind. He shouldn't have to feel those burdens. But, Oh! How I wished he recalled the fun times. 
 
I'm glad I kept journals. Wrote them down. So one day he will go back and "remember". And thank heavens there are the pictures. He'll see when I didn't have the double chin and prednisone effects.

But it doesn't take away the heartache that I feel now in trying to get back to the point where I can ride with him again.
 
If it comes. I did intervals on the Tread Mill. Walk. Stop and Rest. Walk. I don't even bother with shoes. I only go on level 1. (J. takes level 10 and run  like it is nothing- but having good lungs helps._). Since day 1 he has been my physical trainer.
 
* I just got on the Tread. Burned another M&M. I think I've burned 16 since three days ago. Man, they are a hard price to pay for such a little thing.
 
As I did my penance walk, I got to wishing.
 
I wish Steve Jobs were still alive. I'd email him, set up a time we could walk barefoot  around his campus(he did this) and talk about an" igland"
 
 
A device that would hook up to all his others that would tell me how much cortisol I had used. So I wouldn't lie in bed or back off on pushing myself to the "limit".  It would be huge and would go directly into what he told his son would be the wave of the future.... medicine.
 
Then each day I would wake up with my igland attached and I would type in what I needed to do- and it of course would calculate all the cortisol needed for those tasks and tell me when to slow down and when to pour it on. And my adrenal glands would come back to life. I wouldn't burn them out.
 
I wouldn't sit in bed, depressed about being non productive. I'd know that I was letting my gland rest and fix itself. It wouldn't feel like dead beat time. It would feel, well, productive and smart.

this thing probably already exists and an Endocrinologist will tell me thus or tell me there is some test that doest the same thing. But not in a cool, Apple, Inc. sort or way.
 
 
Instead I have to trust and follow my gut. That is harder. However, probably more accurate. Human instinct will always trump computers/technology.

It's just following it that is hard.

Item numero uno today- get an Endocrinologist.

Sunday, March 10, 2013

Adrenal Insufficiency

I have been studying this topic a lot lately. Before you leave this post it hit me that this problem of mine- being on a synthetic cortisol producing drug for almost two years doesn't apply to you- it does.

A nurse suffering from similiar "withdrawel" moments of prednisone posted some info online,, on a forum, that made sense. And she got hooked up with an Endocrinologist.
 
How does it apply to mainstream people? I believe that all the energy drinks, that are so popular do the same thing to the adrenal glands. Coffee does it, too. Caffeine. All of the "energy" producing drinks have the same effect on those little glands on top of the kidneys; makes them shut off.
 
This nurse was able to get into the Endo and have tests done to show how much Cortisol was needed, how much she was deficient and get the help she needed.
 
It simply was one of those light bulb moments. That possibly would help me and the side effects/pain. Prednisone isn't the only synthetic producing med out there. I know there have been some deaths associated with those energy drinks. I know that caffeine works in a milder way to boost you when you are lagging and must have the same effect on the glands.
 
If someone, like me, has to be monitered closely as I taper off such a thing- then possibly those other synthetics are equally or close to needing to be monitered. I never made the connection but the suffering I feel is probably what a teen feels when they need more of those drinks,or whatever.
 
There is literally bone pain, circulation problems, migraines from Hates, inability to lift your corpse off a bed if you don't have that cortisol..
 
I guess my point is:
 
Prednisone is awful.
 
Yes, it has saved my life and is the only med out there to stop inflammation and disease progression. But if you don't HAVE to put yourself through something like this... then I wouldn't.
 
It's awful.
 
If you do- you have my deepest,  most sincere empathy. Hang in there. That's what this nurse said and it made me cry. To know someone has been through what you are sloshing through and made it.
Hold on. I hope you have family or friends like I do, and are supported in your efforts.
Be careful to not overdo it or come off too quickly.
I have made that mistake and it has cause some of the worst mental physical torment and could have taken my life.

But often we have to go through ourselves to be a believer. I know that I have been that way in my life.
 
I do know that I won't ever go on prednisone again, like this nurse unless it is to absolutely save my life. It has been too hard. EAch of us has to weigh those decisions.

Friday, March 8, 2013

Email Request From Friends, etc.

Hey, I am still having problems with Yahoo, despite setting up a new account and hopefully getting the transfer info to the new account so I can get into the old. NOT working. Really not impressed with Yahoo for this.....

So, if you have my cell number, can you send me your email addresses? I have to re-build. Such a bummer.

Sharkie

 
(a stellar cowgirl in her day. Forgot the name- sorrry!)
 
 
Sharkie was a horse.
 
My Great Great Gpa earned rights to him for breaking him in.
 
In some town, in some corral a horse was onery as hell and no one could break him.
 
 Doesn't this sound like John Wayne, or something? The horse ran around the fenced corral like he was on prednisone. Circling it like a mad man.
 
The offer was made, Gpa somehow jumped on him as he circled past and then proceeded to break Sharkie in.
 
He took that thing they use with tassels--- why do I have to pull a word memory loss right now in a story??-- put it over the horse's nose, to stop him from breathing and then bit down on his ear.
 
Yes. Bit his ear.
Hard.
 
It brought Sharkie to his knees.
 
But I think Sharkie wasn't named such until later because sometimes, the horse would bite Gpa.
Gpa would chuckle and say: "Sometimes he gets the Devil in him." Because Sharkie was a good horse, respected my gpa and did what he was supposed to do.
Most of the time. 
 
I have heard this story many times. Padre tells it like Uncle David tells stories in winter time in the winter room from the book of the same title that Jaden and I are reading.
 
There, in the Winter Room, which would be like a living room to us but they only use it when it is winter; when all the work is done, that is where Uncle David and Nels sit with the family and tell the SAME stories
. About where they were from, how Uncle David married the beautiful Alida, she became pregnant and then the two die in childbirth.
And he dies with with them.
Except he comes to America to become a Woodcutter. 
 
The same stories.  Every winter. Told the same way. The same pauses. As the two boys sit in front of a snapping fireplace while their father whittles and their mother knits socks and mittens.
 
 The same way that I listen to the stories that my parents and grandparents tell and have told over the years. 

Does this happen in your homes?
 
The same stories told as if on a recording? Has technology replaced the time that today's kids have to stop and listen to stories from before? The stories that are part of their history? Their story? To they feel a connection to a line that went before them?

I wonder.

Wednesday, March 6, 2013

Coping with Chronic Flopbott Syndrome





Finally I can text my good friend who has texted and called: Can you talk now?

It has been over two weeks that I have been waiting to have the strength to talk.

"You need to write about this." she says to me on the phone.

Me: This? (and I stop and wonder what  this  is? And what good will it do, you, Reader ?)

So early in the morning when I am up for a moment, having been to the lew I disect what this is- and I have to go back to what her first q's to me were:

"OK. What are you doing right now??"

This threw me. I had called to hear all the lovely things that go on in normal people's lives. I did not expect her to jump right to the heart of the matter.

hmmmm.... I have to think. Look at my surroundings. I have my laptop on my lap. I am looking at past pics of family. Going through things for inspiration for something to write. I happen to be at this picture when I called her- and it makes me laugh.

 
(pouty nehpew. ha. His mother is pregnant and he calls the soon to be baby boy: Baby John Wayne. So we have pulled out all the John Wayne movies lately and watched them. This is one thing you should do for yourself in a lifetime. John Wayne. Classic.)

So I confess to her:

"Well, I am looking at pictures that I have taken in the past on my computer. I have gotten out of bed today only to do the basics. Eat. Bathroom. I showered yesterday. I moved to J's room briefly while my mother changed my sheets for me. I came back in and helped finish the top and we talked for a moment....

 ummmm. J. went with cousins today for a wild time and then they came back and have been playing on the Wii Pirates of the Caribean and an Aircraft game "

You see I had pneumonia,and probably had it before I did the infusion of the new drug that bottoms out your immune system on a good day. But a CT scan was what showed the P. and all the X-Rays showed clear as a bell lungs.

(b-day roses. Lucky me. I keep getting fresh flowers. And I haven't been able to take down twig tree and snowflakes cause we keep getting snow! )

But I felt a weight in them... but you go ahead, right? Until later you mount a fever of 103 for a few days and after spending the nights in Padre's chair, J. on the couch camping out next to me. Like Sounder I just sort of went into the back room in a daze and crawled under the sea foam quilt of the guest bedroom. Actually, Sounder, the dog from the book doesn't have a bed to crawl to but he goes off somewhere else for the the imminent death. I can think of other animals/dogs in my reading that do that; leave their masters headquarters for some reason to die.



Not that I thought I was gonna diie. But I sure as heck wasn't going to the ER on a holiday weekend.
Faintly, in the back of my fuzziness of fever I could hear my mother talking to a Dr. down at the U.
Something about a daughter. The Dr.s daughter. If it was him, he'd take her.

No. Please. Just let me stay under the sea foam and not have to go and have needles stuck in me, get whatever the rest of the waiting room folks have on top of what I have, and have a Dr. tell me my labs look great and give me a clean bill of health.

Which is almost what happened... except this time my Dad, Padre,




(He's a good trouble shooter on a case of trouble and I'm glad he came on this one...)

 caught my oxygen levels. As did the competent nurse and pointed them out to Captain ER. The x-Ray became obsolete, CT scan was done. Sneaky Pnuemonia shows up and Specialist is brought in.

All of this happens as I am sinking. Oxygen is important and without it. I just sort of didn't recall anything. I did think I was hallucinating when a woman walked by that resembled a child hood friend and I said her name... thinking that I was dreaming or crossing over. She backed up. It wasn't her. But it was her older sister. Somehow in the mix she grabbed my arm to look for good veins. NOT one. And she said something about how hard it was to get her boys here. Twins. Close in age to my boy. And my mind goes to that boy- of mine. And I think of all the things we do together and I keep breathing.

They give me oxygen. And suddenly the lights seem to come back on instead of closing like the shutter of a camera. I am wheeled out past Captain ER and we make eye contact and I am slightly mad at him for a moment because I had been in weeks before with him. Before the infusion. With this same problem. But he didnt' find it.

Is he regretful? Does he care that he didn't catch what was wrong? Then I am too tired to hold a grudge. It is the ER. Unless there is blood it is really hard to catch a chronic, flopbotting ordeal.

Which in the world of Chronic- could mean Anything.

(button garland moved down to mix with the berries and a strung up rose- the laffy taffy one. We'll see how it dries- if it retains its triple center....)

Fissures. A blockage in your intestines that makes it so you can't go to the bathroom.

Too much going to the bathroom.

An infection. Upper Resp. The Flu. Again. ANYTHING.

And usually you try to work these things out in the Dr. office BEFORE 5. BEFORE the weekend.
So as NOT have to end up dragging your dehydrated self into the ER.

So you push fluids.

I hate that phrase out of the mouths of nurses. Even my favorite nurses. If I were a nurse I would even hate myself for saying it: "Push Fluids!" Like it were watering a flower and you could just pour fluids on top of the plant and they grow.

No.

Pushing fluids when you are sick is like trying to climb Everest without having trained or even bought the plane ticket over there. You are sick. Rolling over in bed is a Herculean effort. And sipping on the mug you got from your last hospital visit or one of the many, is just a dang hard thing to do. But it beats getting stuck 4 or 5 times before they get a vein and possibly picking up staph.

So you push yourself. Hug the mug under an arm and sip. Finally it is futile and you end up going to the infusion people who can get a vein and give you the needed fluids. Cause you lose them fast.

Am I on track, C? Talking about "this"?



Our conversation leads to the Oscars. The pretty dresses. And I think of how irrelevant that all is but then again it isn't. I love that there are mediums of trying to turn life into poetry.
And then give a gold prize to the person who can most poetically do it, hope he/she is dressed worthry of our judgement and go from there. It's a distraction to the real life that is unpoetic as we live it. Because there is nothing poetic about my day it seems. Unless I put relevance to it, and possibly turn to the One that can consecrate it. And on paper, it seems more poetic. Like in a journal.

I tire. And our conversation has to end. This makes me the most sad. Oh! How I love to pretend that my life is still LIFE! That in normal times I could jump in my car and race down to see friends down south- or ANYWHERE! That we would do the normal things friends do that have kids. And that's swim with them in the pool, go on little hikes, ride bikes.  Sled.

Car pool to different sports.

(more white buttons.... in a Mason jar. I love jars as you can see. And old buttons. They connect me to my aunts. Whose buttons they belong to. As well as my own have been added. )

oh. That reminds me, she mentioned snow boarding. This hits hard. Why? Because snow boarding started to become "in" right when I was going "out" of health. One last ski trip in college and a jaunt with a cousin to Targhee almost whispered to me: "you will never do this again."
My bones. Or joints. Or muscular skeletal frame was DONE. They would never ski again.

As was dating. Done. My bed time was when they wanted to pick me up. Nope. Drive in my little red car to the investment center where I worked under the stressful mandates of a stock broker, drive back home, eat at 5, go to bed, start all over the next day at 5 a.m.

So back to today...... why the struggle?


 we used the least amount of anti-biotic to help me fight it off that we could to avoid C-Diff. And blood tests say I have a virus or two right now. Three days ago I walked 13 minutes. The next: I did errands. So who knows. Then:. A block and  half with a friend- amazing how much further you can go with a friend.

Today: nothing. Flat. Flop bottommed out. On my Arse. The night before I googled viral syndrome. Chronic Fatigue Syndrome and ME which is what he CFS people feel is more of a description.

"Is this what you were meaning, C.? When you said I should talk about this? "

What kind of life is this?

Later I call my other friend. *It is good to have friends!

This One that has walked a path I can not imagine. She has suffered. But has NEVER let on to it.
 I tell her what has happened to me. She gives me bits of  her wisdom. I'm sad that I can't go over and talk to her. She isn't far; Two blocks. Her advice on pacing my physcial self is good; use the wall to do weight bearing exercises; the dresser to steady myself as I do knee lifts and go up on my toes. 

Why this work out? I am coming down off of prednisone. "Rescue prednisone" given  in the hospital to help my body from going into shock.  In the hospital it is called: Prenisonlone. Before I knew about it, I had a hospital stay after a trip skiing with my cousin. I could barely walk. THEN eventaully I went into the hospital, got this apparently, and felt on top of the world! So guess what I did! I climbed Table Rock with Alyssa and Amy.

Two weeks later, I talked about it with a kid who came home from his mission and he wanted to go- I said: "Let's do!" And I did. Except this time... was a lot slower. Because I was tapering from prednisone that I failed to even look at or question the side effects- because who does that? I just felt I had been healed and rebounded from whatever it was that happened. Chalked it up to the fever!

Back to this week, now that I KNOW this horrible, toxic drug.- I have done three day courses of a certain amount and THEN will get back to my regular dose that I was at BEFORE the pneumonia.

I am tired.

I think of the people on the forums that I have delved into to find out what is wrong with me- but really it is just to find that I am not the only one out there that is dealing with chronic 'drag your body down into the depths of THIS-NESS.' (This-ness is a term medical personale don't know about. And it is an infirmity that can mold to your very own problems. It's a blanket term we patients can now use cause I have added it to my personal dictionary!)

This is the reality. It doesn't make me afraid. But I do wonder how my son deals with it. He says he likes me just the way I am. But I am not stupid. He wishes I was out there right now in the snow sledding with him or hitting the slopes like we thought we would this year.

He has seen me healthy. We have ridden 11 mile bike rides. But he has grown and even if I was in good health, my arm wasn't as fast with a baseball as his friends and coaches can throw to him. But I can still do grounders and pop flies!

I am tired. And there is so much more to....this....

That is all I could describe to my friend, C. and it makes me feel better and glad she knows and cares about all of THIS! : )



Tuesday, March 5, 2013

Part II of Last Night

 
(This is how the taffy triple rose dried..)
 
 
Since Star Wars came out backwards, so will the post of last night.,,, And we will blame it on Darth Prednisone. Because, why else when you are so tired, you would suddenly get up and start cleaning?
 
After a blog post?
 
This girl.
 
After finally talking with a good friend, and trying to heed her request to write THIS --- meaning  day to day  reality of fighting chronic fatigue, chrohns, depression, infections, side effects and pioneering new drugs upon the pages of this blog. I guess that was what you meant, C?

Well, I did. And then...

 I stopped.

 And had to do something else with my hands. They hurt and I needed to move them in a different way than typing. Can you believe that I haven't written in my journals for months because it hurts? Well,  I take that back. I have written small blips. But not MY story.Which is what they are for.

 So I pulled out the wire I stole from my neighbor which has given  me countless hours of threading buttons to try and help get my mind off my arthritic, hurting, non-circulating hands. Thanks, D.
 
I owe you a spool of wire.

 
(Although it is hard to see, I am beneath the table of The Rock- my second to last trip up there. Since becoming sick. I am proud of that pic and owe it all to Prednisone. It was before I knew its initial super human powers. Thanks for trekking up there with me Dave, and taking this pic.
 It means a lot to me and is a source of inspiration.)

As I moved, more energy came- that needed to be let out..... the next day was a big day for my mother. We'd said our good-nights. She tiredly looked at the floor and mop and decided she'd 'get up early' and do the mopping. 
 
I descended into my "hard evenings" as she went to her bed where I know she fell asleep before her head hit the pillow. 

A big family get together. Two babies. Two Blessings;
One Padre.
 
One home that needed cleaning.

(Some major googling on viruses, flu on top of all this and I went into Disinfect. Sterilization Mode.)
 
I have even avoided holding these new nephews for fear of getting them sick.
I've told Jaden to not breathe right in their faces and have made great strides because of this flu season. And my overly obsessive worry whilst on prednisone.
 
Sooo.... despite the tired. I got up and stretched out my legs and arms. Did some high knees. Then set a small goal: 

Maybe just this basebment bathroom. I told myself.
 
I took out the purple cleaning gloves, gathered several cleaning rags from under the sink and started in slowly. Thinking all the while of Hugh Jackman in Les Mis as he was pulling in the ship and looking like Jafar off Aladin.

(I always love a sink side flower. Nothing says good morning better or 'cheer up!' than sink side, Especially if this is your office and you have to a lot of anguish in this room- try and make it cheery!)

They say start top to bottom. So I did. I wiped the light fixture dust off witha damp  paper towel. I sprayed windex on  the mirror wiped it down and found I had energy to do the hand streaked hallway mirror.

No problems. The curmudingly blood was moving through those veins, like thick grease. For some reason it hurts. But it is better than just being horizontal and having it pool.

Next I tackled the counter tops, sink and down all wood work drawers, the handles and light fixtures.

New rag of course on those light switches and door handle!. I went to each in the basement. I started a load of laundry to clean the shower curtain.

Then I knelt at the throne and cleaned. Scoured. New rag. I knelt on top of the bath mats and slowly hand mopped the floor. As if it was some sort of penance for whatever in life.

(and nothing helps you pull up your petticoats than a good talk with an old or new friend. I have overcome and rose above much cause of those talks. Thanks, C. This is what the young man picked out for me. I will have to find this delivery boy and give him a thank you!)

I found myself with a new rag, a rinsed out bucket and more Lysol going up the stairway. Scouring the walls, handrail and along the trim. And can I plug in here a shout out to Jackman's wife who gets a lot of flack for not meeting the Hollywood standard? She apparently is older than he is, and isn't a size 2. I know that they suffered two miscarriages. Can you imagaine? She is a real person, a mom. She's soft and cuddly like one should be and who knows what kind of health problems she could have? Or all the horrible medicines and shots she had to do to try and get pregnant? If that is what she had to go through. Heck, I applaud a human being on the red carpet next to Hugh, who loves his wife.
It seems to be that way. And I thank the Lord that it wasn't me who had to walk the red while on prednisone to support my really hot husband in an amazing movie. But that is because I am proud.

Yay for people who can look past all us judgemental people! Bravo Mrs. Jackman and thank you. You helped me clean my house too.

Back to my original story......

I reached the top of the stairs where, a landing that was so covered in soot needed sweeping. I stood. ugh. head rush. Do I keep going? This is insane. But I want to GIVE this to my mom. I want her to be rested. I want her to not feel down that the house isn't clean.

Was this me at 4 am?

Yes.

I swept that landing. I knelt down and used the last of the semi dirtywater in the blue bucket.

Did I stop here?

NO. I did not.


(although unfocused, still precious! The last of the V-day Daisy bouquet. You outlasted them all!)

I opened the landing door to a whole new project.

 Sigh:Dishes.
 
The original floor that needed mopping that was what we were going to worry about the next day and let the rest go by the way side. I mean, who notices brand new towels placed strategically? And who lives that way? I am lucky to get J. to not crumple it up into a knot on the bar. (actually he does a good job of folding it and hanging his towel and bath mat. I am proud he is trying to learn those little things that are important.)

 I paced myself through the kitchen. Sterilize sink iwth Clorox. Sweep. Empty sink and start washing some dishes that I let dry while I -Mop. Let dry. While I sit on a chair with the fan blowing above me to speed up the drying process.  Gather my gumption and walk into the upstairs bathroom.
And it's in these moments that I come to know my mother.

Yes, I am a stay-at-home daughter. But we pass like ships in the night due to our schedules. But it is in the cleaning, the folding, the tiredness that I come to know my mother and appreciate her. Does my being here help? Am I an asset to my family, despite being sick?
 I push on.

Clear clutter and wipe down mirrors. The smell of Lysol, Clorox and clean wood is emanating in the house and it makes me happy. It is a backdrop that no one will take notice of unless you are my mother, a mother, or someone who appreciates cleainging before a party or having to put on a party.   
 
Mom and I will have a moment later on that is like passing the baton in a relay race; I will hand off to her what I can not finish.

At this point my lower back is screaming. But I have half of the kitchen floor to cover. And the upstairs bathroom to finish disinfecct.
 
Also.... I have to put my signature atmosphere to the rooms...

Divide up my yellow birthday roses and place them strategically throughout the living room and kitchen for atmosphere.



The idea: a Fresh Palette with which my mom mother could work with the next day as she fed our guests. At 6:30 a.m.  she joined me in making some dishes for the compnay.

(again, a quick pic and out of focus. oh, well. There the yellow beauties show for a day and then, tonight, I  gather them;divide them one, final time to put in my room- so that I can enjoy the last their last moments.)

I finally made it into the comet scoured bath tub and cleaned myself, tied my wet hair into a bun and fell into a coma.


(Oh, how I love the flowers even when they become tired and droop. They are beautiful. )

I missed two babies get blessed, because I was too tired. But I felt the importance and special moment that would take later that day as I cleaned. I felt that I was present in a different sort of way.)
I even stuck a mask on and held one of the babes until Torment Jr. pulled it off like it was a game.
 
But what was funny, I was too tired before I started the cleaning mission.

What changed?
 
(well cortisol level of adrenaline due to prednisone)


 
However
It is amazing what you can accomplish when you realize someone is coming over and you need to clean your toilet. There was company coming and I felt them and thought of my mother who would have gotten up and tried to do all of she could before church and then entertain.
 
 It pushed me on.

I am paying for it today, tonight. As many of you who have dysfunctional bodies can attest.
 I am glad that I have some yellow roses that will be with me another day and sad that this bunch wasn't as hearty at the ones Padre picked up after V-Day.
 
I am happy to report that the two cray fish that joined our fam. will be leaving our fam.
They stink and J. only needed one time of cleaning out their little home to realize that once a week of that would be too much work for him. And even he can't stand the smell.
 
Luckily we didnt' name them. So off they will go. To a home somewhere. Probably back to Wal-Mart. Yay.

*Tell me where you think the best roses come from here in I.F.

I know that in the summer they come from Sister Rose Bush and my Grandmothers. --We will sit for and just admire them and she will tell me too cut one off wrap it in a wet paper towel and put it in a prescription pill vase for the ride home. I love it.

*Tell me what you are reading! J. and I are reading Gary Paulsen's The Winter Room and our FAVORITE The Cricket In Time Square.
 
What are you grateful for right this moment?
 
Don't send these answers to my email. It's defunct and I will be opening up a new one. So don't be afraid to use the link below and you can even be anonymous.
 
What is the hardest thing for you to throw away?
 
How do you keep track of all the cute things your kids make-or do you?
 
What do you do when you are at your wits end? Is there someone special that you can depend on?
 
Tell me!
 
 



Friday, March 1, 2013

Cute Nephew Party Theme


(I love this pillow: Let's Stay Home- Perfect for Cold Idaho Days)


K.W. 's B-day is approaching. His desired theme:" Cute Cousin Party".



So my Bday theme is: Cute Nehpew and Son- But I don't think I can pull it off this year.



(now here's a guy that is willing to follow his older brother into some serious mischief)

Why??



It's hard to get them ALL together in one sitting. And so my bday will have to mesh with K.'s.


I did ask J what he was getting me the other day and astonished he said:....."You expect me to buy you a present? With MY money?"

Me: With my money. Here.(hand him some change from my purse) You know what I like..... get creative. Walk down the aisles of Wal-Mart and pick something out.

He eyed the money and confirmed that the ownership had rightfully taken place, that he now had such and such PLUS this much. And I could see the cogs turning in his brain.

J: "Aren't you a little old for gifts? (looking at my money as if ownership had rightfully taken place.)

And then he went on to say this:

"There is a saying: "When you are too old to get gifts, you don't."'


 (oh, look! another cute, innocent looking nephew. don't let those big eyes and vintage Torment cardigan sway you! He'll tear your glasses off as you walk past him in the hall.)

Me: I'm still 9. I'd take a La-Z-Boy like Padre's. (And P.S. you gift yourself when you're my age, monkey.)

J: Papa is NOT going to take me out to buy you a chair- right now. And not with this much money.(he says holding out the dollar bills like they are chump change.)

Me: You mean to tell me that the day, okay the day plus some before my b-day, you are not at least getting my craft stuff out and making me a home made card?????

J: Cards are dumb. They are just letters. Words. That's dumb.

Me: I love words. Don't you read my blog?

J: Why would I read your blog? I don't even have a lap top.

Now. If you would quit complaining about me getting you a gift, I will.


****
I have a dozen yellow roses sitting on my table upstairs. I gifted myself the annual gifts: cuticle cream. Nail File. And gave myselft a manicure the other day. I also had to get a couple plus size shirts. ugh. I looked at last year's pics and party and it's amazing what a year can do. Especially if you are fighting against disease and an occassional infection.

K's theme for cute cousins is a perfect bday wish- they are really what keep you going. I am minus a pic of one them on here but I'll update eventually. He's  been busy with colic and every time he's been here he's been like a sack of rocks after spending all night keeping his parents up.

Since my email has been down I feel like I have to update a bit.

Have I told the good news that we have a Tread Mill? I can now try and hack it out on the mill without compromising my lungs outside. J easily was running 10 mph and I cranked out a good half lap in 5 min. It was on manual so I was making it turn.... if that counts. And I'm pretty religious with the breathing instrument I have to open up the bronchial tubes.

The other day I saw someone who hasn't seen me in awhile and she was a bit surprised at the change.
-It can be very surprising. I feel that I should post pics of me and not be ashamed. Like the gal that passed away from cancer that I read about... she was beautiful and when she was on all the prednisone and meds at the end of her life- I didn't think any differently! Her spirit shone through! She was grateful for every little thing. While I hum bug a lot of things. I must not be learning what I need to learn from all this.

Thanks so much to those who sent cards, texts, and everything on the table upstairs. I love the flowers, Michelle. I am a stubborn penny pincher one minute and the next, heck, I'd buy fresh flowers for inside the house. And that's saying something for me!

We have two new cray fish that J. added to our family. They give me the hibbie jibbies, flailing their hand out and making me think they could crawl up the side of their aquarium, down the sides, across the floor, snip onto the bedspread and creep right up onto me while J. and I read. 

Thanks to the people in my life who see a need and fill it. I've actually written you thank you notes. But they are unsent.

There are some people that I have met in my life that are constant and aware. It isn't that we hang out all the time, but they watch after me and my son and associate with us in ways that humble me. Thanks. I hope that one day tables turn and I can be that way, too.

Obviously, it is late and I am up. Unlike Michelle, I haven't cut out bangs as a mid-life crisis. So, I blogged in the wee hours.

I've gone in and kissed my boys cheeks a few more times and thought on what it has been to be a mom. He will turn 10 this year and pass me up in bday age. So our "Special Year" will soon come to a close. He's made a lot of strides and I am proud.

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