Encouraging Cushies

Although these were written for people with fibromyalgia, these ideas would also work for someone with Cushing's.  8 Ways to Encourage a Chronically Ill Mom

I especially liked number 4:

Avoid telling her about the cures you’ve heard for her illness, the juice products you may sell that could help her, or about your mother’s cousin’s sister who has the same illness but still manages to raise five children and work full-time. Don’t comment that the diet she is on is harmful, that the medications are just a bunch of poison or say, “don’t you realize those doctors are just out to make money off of you?” She’s heard it all and if you can be her safe haven from that it will result in a deeper friendship.

I can’t remember how many suggestions I’ve had to fix my Cushing’s, my lack of energy, my fears of cancer recurrence.

I should take fish oil capsules, essential oils, selenium, antidepressants, SAM-e, join yet another gym, rejoin Weight Watchers, buy a Wii Fit…

Tried them all and none of it helps.

Read that article and send it to all your friends and relatives!  Her book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Conquering the Confusions of Chronic Illness), is out of stock but I’m adding it to my wish list!

What ideas have people suggested to you?

From an MS Blog but fits Cushies, too!

The steroid taper finished up this past Sunday, but instead of finding some new energy, I've been caught in a fog of fatigue. Without too much choice in the matter, I've drifted off to the land of comatose and nod for hours during the past three days. As I know many of you have been in the same place far more often than either of us would like, I thought you might enjoy the following poem taken from Falling Up by Shel Silverstein, a well-loved book which sits in the waiting room of my music studio.

The Nap Taker
No--I did not take a nap--
The nap--took--me
Off the bed and out the window
Far beyond the sea,
To a land where sleepy heads
Read only comic books
And lock their naps in iron safes
So that they can't get took.

And soon as I came to that land,
I also came to grief.
The people pointed at me, shouting,
"Where's the nap, you thief?"
They took me to the courthouse.
The judge put on his cap.
He said, "My child, you are on trial
For taking someone's nap.

"Yes, all you selfish children,
You think just of yourselves
And don't care if the nap you take
Belongs to someone else.
It happens that the nap you took
Without a thought or care
Belongs to Bonnie Bowlingbrook,
Who's sitting' cryin' there.

"She hasn't slept in quite some time--
Just see her eyelids flap.
She's tired and drowsy--cranky too,
'Cause guess who took her nap?"
The jury cried, "You're guilty, yes,
You're guilty as can be,
But just return the nap you took
And we might set you free."

"I did not take that nap," I cried.
"I give my solemn vow,
And if I took it by mistake
I do not have it now."
"Oh fiddle-fudge," cried out the judge,
"Your record looks quite sour.
Last night I see you stole a kiss,
Last week you took a shower,

"You beat your eggs, you've whipped your cream,
At work you punched the clock,
You've even killed an hour or two,
We've heard you darn your socks,
We know you shot a basketball,
You've stolen second base,
And we can see you're guilty
From the sleep that's on your face.

"Go lie down on your blanket now
And cry your guilty tears.
I sentence you to one long nap
For ninety million years.
And when the other children see
This nap that never ends,
No child will ever dare to take
Somebody's nap again."

http://brassandivory.blogspot.com/2009/07/nap-taker.html#ixzz0Ks2gGAQZ&D

The Internet can be a wonderful place But...

...sometimes it can lead you down paths you don't want to/shouldn't go.

I started this post a few days ago and couldn't continue.

I follow the blog of a woman who is dying of "my" cancer.  She's doing it with grace and dignity.  Her friends and family are leaving wonderfully supportive comments.  She seems to be so loved - by everyone.

It makes me wonder about how it will be for me.  I don't have that many real life friends and very little family.

I remember being a college student when my Nana died.  The family - my step-granddad, my father, my mom and I - sat for hours at the calling hours and no one came.  Same with the funeral.  Just us, and a minister.

How sad is that?  To live your whole life and at the end there's no one?

~~~~~~~~~~~~~~~~~~~~~~

On another completely different note, one of the message boards I participate in recently asked the question of whether the members still felt pretty.

That raised a whole can of worms for me.  I have never, ever felt pretty.  Even when I was a kid and your parents are supposed to think you're cute, my family let me know that I was fat and ugly. 

When by a fluke of teenage nature I was going to a prom and showing off my dress my grandmother only said that I'd inherited the family moles.  Not even that the dress was nice.  Just another of my imperfections.

~~~~~~~~~~~~~~~~~~~~

So...I've been depressed for about a month now.  I'm feeling overwhelmed, overworked, under appreciated.  I'll never, ever, catch up with the web work that I need to do.

Every day there are would-be hackers posting on the message boards and other ones signing up for another of the Cushing's sites to do God-knows -what kind of damage as members there.

New bios, newsletters - no time or energy to do those.

Non-profit - I need to put together a resume and recreate all the past years financial records as well as guess what will be in the future.

All I want to do is sleep.

What have I gotten myself into?

The New Year

So, the New Year is going.

I haven't kept any resolutions but, then, the ones I "made" were the ones I always do - exercise more, eat less, drink more water, tidy the house more.

I think that those are all kind of hopeless.

I think I'm doing generally better than I was last year at this time.  My counselor thinks I am, at least doing better than I was two years ago.

We both think it's maybe because of my part-time, temporary job.  I'm getting out of the house more, being with people, getting away from talking about Cushing's all the time and working on the computer with websites, news items, blogs and whatnot.

So, I'm working more and napping less but I seem to be getting it mostly done.  I was never great with housework so it's hard to tell if things are worse or not.

I am teaching piano less than ever.  I hate to give it up completely, though, just in case.

Today, Friday, is my day off and I so enjoy this - although I'm catching up on Cushing's work.  All the new bios and accumulated news items through the week.

What will this year bring? 

Will I get more energy somehow? 

Will I decide to work part-time on a more permanent basis?  Could/should I even think of that? 

Will my family stay healthy?  No more strokes, cancer, unknown issues!  Will we travel more like we always say we will?

Tune in as all these questions are answered!

Sleep, tired, nap, Sleep...

Seems like an endless cycle of either sleeping or being sleepy, napping or dozing off.  I miss the olden days when we used to have "project weekends" and get so much done, things built, rooms organized, going places, doing things, living.

My life now seems like it's a prelude to death.  I mostly can't stay awake for anything.

Yesterday I just slept most of the time.

I got up this morning and went to church - my kiddies sang at the first service, then another group rang at the second.  I left right after the bells and was home by 11:15AM.  And I napped until I had to leave for rehearsal at 4:45.  Home by 6:15 and - napped until dinner.  Ate and slept during TV. 

What a bore I must be.  Can't go anywhere, or do anything because I'm too tired. 

I cancel piano students because I'm too tired to clean stuff off  the piano before they come, don't call friends because I don't have the energy to talk. 

We run out of stuff because I'm to tired to go to the grocery and I can't remember when I vacuumed last.  And dust is everywhere.

Not that I'd spend my time cleaning if I had it but I'd like to make the choice myself what to do and not just depend on my lack of energy.

Maybe sometime I'll take a pile of Cortef and be done with it.  I'll gain my Cushie weight back again but maybe it would be worth it.

Decisions, decisions, part 2

On Saturday I wrote Cushing's & Cancer: Decisions, decisions: "Although this was not completely unexpected, I have been asked to be the interim assistant music director of my church. Prior to being asked, I had always thought that I would turn this position down immediately but now I find myself thinking about it. I have said that I would call in my decision on Monday so my weekend is cut out for me."

I think I've pretty much decided that I will say no. I actually made the call but got an answering machine. I talked to lots of people about this. Husband said YES, Best friend said that there was no way I would have the energy to do this.

When I woke up this morning, my first thought was "what if I had to go to work today?" and I realized that I couldn't do it, not today, anyway.

When I think about my naps and the little energy I have now... and since then we were looking at a puppy.

If we get her, that will be a further energy drain. But how could we resist this beautiful face?

So, at least until I get the return call, the answer is no.

Exhaustion, again

Today, we went out to "our" farm again. We've been members of this CSA (consumer supported agriculture) farm for 13 years now.

It's wonderful! They deliver fresh, in season, no pesticides veggies, various fruits and berries from May through October, once a week. The other days, we can go out anytime we want and pick whatever is available.

I love just going out there, even if I don't feel like picking. It's wonderful to get away, out to "our" farm, and see the animals, and the veggies...very soothing and healing.

The first year we belonged, I did a comparison study of several of the local stores, and carefully weighed everything. The farm was a bargain.

In addition to getting all this stuff, we've made some new friends, I've tried some new veggies and herbs - and I think it's important to support the small local farmer like this - and to have a source of food that hasn't been sprayed with chemicals.

Anyway, we went out again today. We haven't been so much since our son went away to college. But just driving out into the country is so refreshing.

For the last several years, I've had trouble getting back from picking stuff. I could hike out to the fields ok and pick but coming back, I'd have to stop and sit by the side of the dirt road, sometimes even lying down. After a while of this, I found that taking an extra Cortef would help. I found that eating a raw green pepper would sometimes help, too. I don't know if it was the heat, the walk, the 'work" of picking or some combo that caused this to happen.

Today seemed better. We went to the peach orchard and picked about 10 pounds of peaches which we took back to the car. My husband wanted to stop by the blackberries - just a little out of our way. I wanted to take the farm wagon out for the blackberries. In addition to the field we knew, there was supposed to be a new one, further away.

So...we got back to the car and put our peaches away. We waited a while for the wagon but my husband got impatient and wanted to walk back to the berries. I gave him the boxes and told him I'd wait on the porch, in a rocking chair, in the shade, thank you.

I finally summoned up some more energy and went out and helped him finish the blackberry picking. On the way home, we were talking about how I seemed to have more energy, that I had made it back after the peaches but I reminded him that it was cooler than it often is and that the peaches were about halfway to the fields where we've usually picked vegetables. So, maybe my energy level isn't really any better.

We got home about 5. And I napped until 9:45. Some improvement - HA!

Electronics and Health

A while back I posted about my WiiFit in a post called Just Mii and My Shadow... Sine the Music Camp experiences, I've gotten out of the WiiFit habit but I've also started a Nintendo DS program called My Weight Loss Coach.

I just started doing this today and it was kind of interesting - better than the games I usually play, anyway! Maybe by the end of the year or so I'll actually lose some weight and / or get some more energy. Either or both would be great.

I'm sure that this program gets harder as time goes on. They didn't want to put people off the first day.

Now, I have to restart the WiiFit after too long a hiatus.

It's amazing how easily the excuses come. I couldn't do this because of music camp, because of the dentist, because of an eye doctor appointment, because I was napping...

So - wish me luck as I try to get healthier.

Trying to go on Growth Hormone, part 2 (Golden Oldies)

Continuation of Trying to go on Growth Hormone (Golden Oldies)

Nov 5, 2004

After all this time, to get so close to getting GH, my insurance company rejected me.

I am not approved or authorized and I don't meet medical criteria necessary and a whole lot of other stuff which indicates that they don't care a bit, even though they call themselves "CareFirst".

So some insurance idiot thinks he knows more about the testing than a Growth Hormone Specialist. Sheesh!

Of course, I got this too late to talk to my case worker at Genentech, but I left her a message on her answering machine. I don't know if she'll understand it, since I was crying so hard.

I hate my life!

~~~~~~~~~~~~~~~~

Nov 22, 2004

I haven't got the stuff yet, and I'm already worried about traveling with it.

I know that the type that my insurance will pay for (Norditropin) doesn't have any preservatives so it can only be unrefrigerated for an hour, then it becomes trash - however much is left in the cartridge.

Those little cooler things with the bricks to freeze that they provide for you - how long do they actually keep the stuff cold?

For car trips, has anyone bought one of those refrigerators that plug into the cigarette lighter and, if so, is there any type that you recommend?

How hard is it to get a refrigerator in a hotel room? I know that there was none in Nashville, unless you asked specifically. If you have one of those car cooler things, can you get it so it plugs into a regular outlet, too?

If flying, will the plane staff put it in one of the plane coolers during the flight?

The things we worry about!

Now I just have to get my hands on the stuff LOL

~~~~~~~~~~~~~~

Mar 4 2005, 12:22 PM

From what I've read, many people here have lost weight on GH. I've gained about 10 pounds since September sad.gif I've been on the GH since Dec. 6, about half that time.

Very little, if any, extra energy. AARRGGH!

Has anyone else gained on GH instead of losing?

~~~~~~~~~~~~~~~

Apr 13 2006 (The night before my kidney cancer diagnosis)

I'm at the hotel, back from my 6-month appointment at Johns Hopkins. When they ran the arginine test for growth hormone over a year ago, they did it wrong sad.gif Not just me, but everyone for a couple years.

This means that I've been on the wrong amount of GH for the whole time. I have to go off for 2 weeks to get it out of my system, be retested the right way and start again.

The way the test instructions are worded, the infusion lab misinterpreted. My endo was doing some GH research, writing a paper and came across this "little" mistake.

So, no wonder I'm not feeling any better like most everyone on here does after starting GH.

Sheesh!

Music Camp is done!

I posted last week about my energy levels and music camp teaching. I came out of it better than I thought I would but I ended up having a headache from Friday until Sunday. And, I'm not supposed to take any meds without approval from my kidney surgeon. So, I toughed out the headache.

The first day was a nightmare - one of the 6th graders started crying during the first handbell rehearsal. I don't blame her, either. She was the only one in the group who had never rung before. Her class had also come directly from Orff class and I guess that some experience would have helped there, too.

The second day our church's assistant music director got sick with a high fever and didn't come in. Actually, she didn't make it for the whole rest of the week. So, there was a lot of shuffling around of classes and some students were moved from one class to another. Somehow, we got through the day. I had to take a bit of extra Cortef to make it until naptime.

By Wednesday I figured that I could have 2 groups ready to play something on Friday, both with a water theme. So, the second graders would play Lightly Row and the sixth (even the cryer!) would play The Water is Wide, both by that famous composer - Traditional.

Thursday I was finally getting the hang of all these different classes. There was virtually no time to set up between class which made it a little tough since every class had different pieces and some had chimes instead of bells, some doubled different parts, some had TAs filling in. But it worked out!

Friday was mostly spent on the dress rehearsal and show. My kids did great playing their pieces before the show. My mom even came to see!

I left Friday with such a headache. It started in the right side of the back of my neck, then worked its way up to the left side of my forehead by Sunday afternoon.

Sunday, the kids performed a couple songs from the musical at all 3 church services. My husband even came to the first service. Even rarer than my mom coming to the performance. Since the assistant director was still out sick, I stayed for all 3 services as a second director in case the kids looked my way.

All in all, a success!

Things must be getting better. When I first started music camp about 5 years ago I would sleep until about 11:30am, go to camp, get home about 4:30 and sleep and sleep. I think I was on growth hormone by then, too.

I was definitely on cortef again at that point. I had been off for something like 15 years after my pituitary surgery, then the scar tissue caused the pituitary to not work so well so my endo had me go back on the cortisone. He wanted me to take a lot more but when I did, the Cushing's symptoms - including weight gain and that hump - started coming back.

So, I'm on the smallest possible dose. It's not enough to help me feel better but not enough to bring on Cushing's. When I'm "stressed" I'm supposed to up the dose. The growth hormone was supposed to help with my energy and weight issues but it did neither.

Then 2 years ago I had just had my kidney cancer surgery and I was still tired from that experience - and newly off the growth hormone. (Because of the cancer, I can't take growth hormone) I got through camp, just barely.

So, maybe next year, if I still get "volunteered" I'll be able to do this without any extra cortisone and no headaches.

Summer Music Camp

My church is doing music camp again this summer as it has for the last 4 or 5 years. And once again, I was "volunteered" to help out. Every year, for the whole week, I have come home exhausted, bone-tired.

This year is no different but I found out last week that I was in charge of the handbell classes. EEEK! There are 5 classes each day from second to sixth grade. Each group is a mix of kids, some have rung for a few years, some have never rung at all. Getting these kids organized and capable of playing something at the end of this week will take a miracle! Except for the sixth grade, at the end of the first day none of the other classes could ring any actual music other than left hand, right hand, left hand...

I don't know if I could have handled (no pun intended!) this pre-Cushing's when I was younger or not but the stress and the long afternoons are really sapping my energy levels to next-to nothing.

Golden Oldies - Posts from the Past - Part 2

From November 17, 2006:

Catching Up With The Cancer

Since I had surgery for kidney cancer May 9, 2006, I've been looking around for somewhere to read and talk about this with other survivors (hopefully!) I haven't found anyplace I'd like to visit or feel comfortable with yet, so I decided to make a new blog here.

I'm sure that my recovery will be much the same as for any other major abdominal surgery, although I'd like it to be faster.

Before my surgery, I didn't have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe... Just boom, there it is. Cancer.

Now that I'm about 6 months post-op, I'm thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn't a cell hiding out.

I know I have to be careful with meds - no NSAIDs so my arthritis is worse. I can no longer take hGH (recombinant growth hormone by daily injection, due to panhypopituitarism) even though I'm deficient. In 5 years (if I survive!) I can take the GH again, supposedly.

I'm supposed to be eating less protein, more fruits/veggies, drinking more water.

And I'm supposed to avoid playing football and other things that might damage my remaining kidney.

Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.

Sometimes, at night when I can't sleep, I wonder why I was lucky like this. What haven't I done with my life that I should. Seems to me that I've accomplished what I should already.

And, in the night, I worry about the cancer returning, taking my other kidney or worse.

At this time, there's no standard chemo unless it's metastasized, although there are some promising clinical trials. Radiation doesn't seem to work for this kind of cancer, so if it returns it's more surgery.

From my past posts:

First off, I'd like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say "...and I can't deny the fact that you like me, right now, you like me!" but I won't.

I plan to print everything out and take it with me to the hospital as a cheery-upper.

Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.

As it is, I'm currently feeling "normal" whatever that is. If I didn't know I had a problem, I would think that I was just fine.

I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.

I know that the tumor has been growing for quite a while - it's very large. I saw the MRI images and even I can tell that it's not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.

When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdominal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an "emergency" (not scheduled weeks in advance) bone scan. Oh, well.

My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital ( http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I'm expected to stay there for 3-5 days post op and they don't anticipate any pesky complications like chemo or radiation at this time.

For now, I'm keeping my normal schedule, avoiding reading horror stories online, eating, sleeping - even napping! - as usual. Sometimes I even forget that I have this little medical appointment next week.

For a non-phone person I've talked with so many people these last few days, it's mind-boggling.

I'm happy to report that all is not lost on the cruise. Someone will replace me - and there will be another cruise later in the year. YEA! My main "concern" on that now is that I'll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.

In thinking back, I think it's a good thing that my arginine test was messed up in Sept of 05. If it hadn't been, I wouldn't have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.

So, it's all good.

Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like...

and

June 12, 2006 post-op:

Thank you all for your prayers, good wishes, cards, phone calls, gifts, general "cheery-uppers". They all really helped me on my road to recovery.

I do have a ton of thank you cards to send out to lots of people - I'm very slow at that sad.gif Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse.

I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren't so great. Of course, they were awful before. I can no longer take the GH even though I'm deficient. In 5 years (if I survive!) I can take the GH again, supposedly.

I've had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed - at least I think that's what set it off. If I hadn't had all the blood and pain for one day only, I'd have had no clue that I had this cancer and who knows what would have happened in that next week.

I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.

I plan to keep a kidney cancer journal of sorts in here, so years from now I can look back and laugh and wonder why in the world I was so worried.

I just updated my bio. I said:

Update October 26, 2006

I went to see my Johns Hopkins endo again last week. He doesn't "think" that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

He was happy to see that I had lost 22 pounds since my last 6 month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more.

He thought that my blood pressure was low - for me, not for "normal" people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer.

My energy levels are lower than when I was on GH, and they're lower again because I had the adrenal removed, because of my panhypopit, because of my cancer (even though currently NED, it can come back at any time, because of my GH deficiency...

Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something "easy". I'm starting to get very depressed over all this.

If this is the way the rest of my life is going to be, why bother?

People mostly assume that everything is OK with me because I am not getting chemo or radiation and because I look so "healthy" (thanks to the Cushing's/daily Cortef!). They figure that if there was any real danger of the cancer metasticizing that I would be on chemo, like other cancer patients do.

They don't understand that I have to wait and pray because there are no approved ajuvant treatments. If/when my cancer returns, it's just more surgery. If I'm "lucky" enough and get to a stage 4 THEN I can have chemo/radiation as a pallative measure.

Aarrggh! Do I see starting a kidney cancer support group in my future?