A Very Happy New Year to All!

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My son made this image several years ago, with me holding a soccer ball and him splicing in the actual Times Square New Years Eve countdown ball.

I think he was so clever doing this :)

 

Now let's see if I can stay awake to see the actual event!

 

A happy and (more!) healthy New Year to all!

 

Happy New Year!

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haven't been feeling up to keeping my blog current, many apologies. ;) I wanted to wish everyone a Happy New Year!

I'm actually doing quite well right now. Have you ever been afraid to say something out loud just in case the world might hear you and everything would go to hell in a handbasket? *ducking*


Right now I am in enrolled in a medical study on heart disease in women with low estrogen and I'm hoping that my participation helps. I also enrolled in the genetic study portion. Do people really refuse that on a regular basis? They seemed delighted that I agreed to join in. ??? I have two daughters and anything I can do to help resolve this mystery medical nightmare is a "good thing".

Have a happy and safe New Year!

From a doctor with a chronic disease and Cushing's

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This anonymous doctor posted here: http://some-elsie.blogspot.com/

S/he said in part

I think there must be a huge transition point when you realize that chronic relapses and remissions are going to be part of your life - with a lot of struggle and distress beforehand. Also there is the hope things will get better, with just a little more rest, etc. But then you plunge into anger and loss of what was, not knowing what exactly will be.

I continue to work part-time, but I am in a fairly constant state of low grade pain which is incredibly wearing and draining.

I've been on full disability for over 5 years, and it was an awful decision to make, but no real choice due to severity of my symptoms. I have kept my license up, hanging on to the thread of hope that some great biologic will come along and put me back in the game.

It is incredibly challenging to look well and have others expect you to function like a normal person. Most people don't know that my round face is not robustness, but Cushing's secondary to long term steroids.

I know how this doctor feels for sure.  I don't have what he/she has but I know the feeling of not being able to function well.

I'm hanging on to only 2 piano students, who  I usually hope will cancel - or I cancel them - but I'm scared to death of quitting teaching altogether.  What if, by some miracle, I do feel better someday?  In my mind I know that this is so unlikely because I've felt like this for nearly 30 years but somehow, maybe?

My temporary job is cutting into my energy, too.  People just don't understand the need to nap NOW, that I can't do just this little one more thing. 

My husband still doesn't get it, either.  If not now, when?

I don't think at this stage of the game the Cushing's will come back but there are those aftereffects.  The panhypopituitarism, low growth hormone, adrenal insufficiency followed by the removal of one of those low-functioning adrenals.

Whenever there's an ache or pain, I wonder if there's a cancer growing somewhere else, ready to grab my other kidney or worse by moving somewhere else.  Will my parent's colon cancer finally strike?

Growing older is the pits but, as they say, it beats the alternative!

Originally posted on Cushings & Cancer

A bitter pill...

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Low Vitamin D levels in Type 1 Diabetes

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Many of us who face Cushing's know what happens to our vitamin D levels. They drop and we experience the problems caused by the low levels. Many of us fight a lowered immune system and low calcium because of it. It really hampers us and in ways we probably don't even realize. Dr Friedman from Good Hormone Health writes:

Vitamin D appears to have many effects besides being related to calcium and bone health. Some patients with low vitamin D levels have fatigue and bone pain, which is easily reversible with proper replacement of vitamin D. Vitamin D may protect against heart disease and some types of cancer. Vitamin D may also have some role in regulating the immune system and also reducing blood sugar levels in patients with diabetes. Proper vitamin D levels are needed to prevent osteoporosis. In conclusion, proper vitamin D levels are essential for one’s health, especially if you have thyroid problems. Unless a patient is exposed to sunlight or foods containing vitamin D, screening for Vitamin D deficiency is recommended for all thyroid patients.


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New drug that could bolster the immune system

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This new drug caught my attention. I have a disease that suppresses the immune system. The longer it goes on, the worse the immune system can become. Naturally I am quite interested in anything that could possibly help. This drug is a long way off from the average patient. Just knowing that something like this is being worked on is a good feeling. Hopefully it works well and reaches those who need it quickly and safely.

SCOTTSDALE, Ariz. - Dec. 19, 2008 - The Translational Genomics Research Institute (TGen), Scottsdale Healthcare and Mayo Clinic are testing a new drug that could help cancer patients by stimulating the immune system.




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A tree full of Christmas memories

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Ever since I can remember, making ornaments for our Christmas trees has been a family tradition. Walk with me down memory lane while I share some of the ornaments which grace my tree this year.

This ceramic angel is probably one of the oldest ornaments on the tree. There were 7 at one time, but one did get broken through the years. I don't remember how. I just remember that it did. There are now 6 of them on my tree. I made these when I was about 11. My mother took a ceramics course and I tagged along with her when she went. At one of the sessions, I was invited to participate and I made the angels with a mold. They were fired and the next session I applied the gold to them. They hung on my parents' tree until I had my own family, and have since hung on our family tree.

My mother is a gifted artist. She is also a gifted seamstress. She combined those to make many ornaments for us through the years. When my daughters were 2 and 5, she made them these beautiful, quilted stockings. It isn't Christmas without them. That's the first thing they grab EARLY on Christmas Day and delight going through now at 23 and 26 just as much as they did when 1 and 4.

Mother's also made many other ornaments on our tree through the years. Most have a special meaning. For instance, the quilted and stuffed cats and rabbits are reminiscent of my girls' love of animals through the years. They had many of each, and I'm surprised there aren't ducks, geese, turkeys, dogs, mice, hamsters, fish, chickens, turtles, frogs, and more. They had those, too.

Other quilted ornaments were lovingly made as the years went by. Quilt squares of all sorts, stuffed and quilted trees decorated with buttons, and many more. Each button on the trees has a story, too, and came from some garment of significance or were leftovers after making such a garment. I smile as I write this because it reminds me of the button jar my mother has full of very old buttons. I started to write I used to love to play with those buttons, but honestly, I still love to play with them.








The wooden ornaments were made with help from my dad. He cut them out for us to paint or decorate in some way. The angels and gloves were painted and/or decorated with fabrics. The doves we left natural and strung with ribbon. He also helped us with wooden clothespin reindeer.

A long time ago I learned to make beaded ornaments and string angels. Together the girls and I made enough of the beaded ornaments for a large extended family reunion many years ago. My mother's whole family gathered for an old-timey Christmas in the mountains of Gatlinburg, TN. We celebrated by sharing handmade ornaments and gifts.




There are also several cross-stitched pretties on our tree. Again, my mother spent many long hours on those. The angels were made for my girls, one for each. She used her embroidery machine to make some pretty ones, too. Adorning the tree are two sets of ballet slippers which remind us of the years those little feet tripped along the dance floor, gradually growing into much larger feet.



The stained-glass ornaments (see below) were made with kits bought for the girls one year. They glittered softly in the light and fascinated them after they were done. They had to place them "just so" for the most effect.

A long time ago, when I was a child, my maternal grandmother embroidered Christmas balls for each of us. Years later, we made Christmas balls using fabric and styrofoam.

And there are more...so many more. I feel so blessed this Christmas when I remember all the love, sharing, caring, and laughter that has surrounded my family. Our Christmas tree symbolizes that. May you be surrounded with love and laughter this Christmas.

God bless you.




Published at survive the journey

Why? Why Not?

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This quote is from Herding Zebras

When I start asking “why me”, I turn to…
Isaiah 6:8
Then I heard the voice of the Lord saying,
“Whom shall I send? And who will go for us?”
And I said, “Here am I. Send me!”
..and say “why not me”.
Like the saying goes, “It is choice, not chance, that determines your destiny.” We control how we react to bad situations. Life isn’t about fair or unfair. Life is about the ability to choose. Some things, like cancer, cushing’s and life threatening illnesses give us little or no choice in the matter. Most of us do not raise our hand and say pick me. What we do have is the ability to choose on how we react to it and how we let it define us or rather, how we redefine ourselves after facing something tragic.

Over the last 25 years or so I've asked myself the same question, like most of us have, I'm sure.  My dad was from the Why Not? school so I kind of leaned that way, too.

If someone had to get Cushing's why wouldn't it be me?  But the main question is why anyone had to get Cushing's in the first place.  It's not like a disease caused by bacteria or parasites where another organism is trying to live and prosper.  Cushing's just is.

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Why Not?

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When I start asking “why me”, I turn to…

Isaiah 6:8

Then I heard the voice of the Lord saying,
“Whom shall I send? And who will go for us?”
And I said, “Here am I. Send me!”

..and say “why not me”.

Like the saying goes, “It is choice, not chance, that determines your destiny.” We control how we react to bad situations. Life isn’t about fair or unfair. Life is about the ability to choose. Some things, like cancer, cushing’s and life threatening illnesses give us little or no choice in the matter. Most of us do not raise our hand and say pick me. What we do have is the ability to choose on how we react to it and how we let it define us or rather, how we redefine ourselves after facing something tragic. I still remember leaving MD Anderson hospital after recovery. The air was sweeter. The sun was brighter. Life seemed fresh and anew.

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I think I want to elaborate on my last post about depression & illness. Let's call it depression, illness & stress.
I spent many years being sick on an almost daily basis. When I was feeling good, my life seemed to have very little stress. Just the average stress that most people have; working, raising kids, school functions, is there enough money, what will I fix for supper, what will it cost to replace the car, etc., etc.
When I was getting ready to go to my first appointment with my current GI, I was feeling sick on a daily basis, and depressed. My sister was going with me to the appointment which was three hours away. Two days before my appointment the door handle on the passenger side of my van quit working from the outside. I spent a frantic day finding a place that could get it fixed right away. It was finally replaced with a door handle from a salvage yard. I was so thankful because it stressed me so much to think that Sue would not be able to open her door to get into the van. Getting it fixed before the appointment was a very major thing to me.
Jump forward several months. My new meds were keeping things on a pretty even keel and life seemed pretty good. Well, one morning while doing papers with Justin the same door handle quit working again, from the outside. I just laughed and said that it hadn't lasted long. I think it took a week or more to get it fixed. It got to be a little unhandy so I couldn't let it go too long.
During this same week I also had to take the cat to the vet. A couple other things out of the ordinary also happened that week, I just can't recall them. But, none of it stressed me at all. If it wouldn't of been for the door handle incidents I might not of noticed this. When I was sick it was a major thing, when I was feeling good, barely a blip on the radar.
That got me to thinking about other things in my life and how I handle them when I'm sick versus when I'm feeling good. When I'm sick, any change of plans really throws me. I suppose because it's going to take brain power (that's seriously missing when sick) to rearrange my schedule. A change of plans when I feel good is no big deal. In fact we all have changes of plans daily. Small things such as one store not having a product I need so I have to make a stop at another store. Most days I don't even think about those kind of things but if I'm sick it's major.
Something as small as forgetting to thaw meat out for supper could put me in a tailspin when I was sick. When feeling good, I seldom forgot things like that & if I did, it didn't really matter.
So what I'm saying is that being sick is stressful. I remember reading a book about Crohn's Disease when I was newly diagnosed. There was a chapter about keeping stress to a minimum so as not to induce a flareup. Even then, I remember thinking "but my life isn't stressful, except for dealing with Crohn's." Farther into the book I found a passage from another doctor who stated that he thought it was stressful to have a chronic illness. Bingo!I do realize there are other things that can cause major stress but I maintain that it will be much easier to deal with if the body is healthy.

Illness & depression

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I've heard it said many times and I've read it many times, depression can cause illness. HHMMMM? I would wonder. I have my own personal theory about that and love to tell anyone who will listen.

I have lived with Crohn's for many years. It took several years to get it under control (for the most part) and keep it that way. I still have the occasional flareup but these days they are usually short lived instead of days/weeks long.

One thing I have noticed over the years is how often I suffer from depression.

When I was with my original GI, I sometimes noticed the depression. But truthfully at that time it was somewhat hard to tell as I seemed to be sick most of the time or on massive doses of prednisone. Of course each time I was getting to the end of my wean off of prednisone I was starting to feel sick again. When you walk around daily feeling like you will throw up any minute, have stomach cramping to rival both childbirth labors I've been through, run a constant temp of over 100, while trying to raise young children, work full time and keep up with the house work and everything involved with keeping the family running, it would probably be a little hard to notice some depression mixed in there.

I do remember once telling my GI that I thought I noticed my mood changing a lot right before I would have a really bad attack. Really bad, meant having most of the above symptoms plus severe diarrhea and vomiting for about twenty four hours. I would then go back to the "normal" feeling bad. He told me it was my cycles. I didn't believe him.

I eventually dropped this GI and just went through my PCP. Mostly what kept me feeling semi decent through this time was that I only ate soup. Five months and all I ate was soup. A couple of bites of solid food could set off an attack. I finally had a NP refer me to a new GI.

I fell in love. I had my initial visit and I believe, went home with a prescription, although I can't remember for sure. I know I went to my second appointment with a long list of questions and more questions depending on what answers I got to the original questions. I never had to ask one of them. Dr. Johnson walked in, greeted me and sat down and started talking. He addressed every question I had without me having to ask. He had a plan! And if the plan didn't work he had some backup plans. Wow, I was so impressed. It took several visits to get my medication regulated. And for the most part I've been doing okay for the last few years. I have checkups every few months.
All this has been leading up to my bouts of depression. While Dr. J and I were working on getting my meds regulated to the correct dosage I would quite often have depression. It would take me awhile to recognize the symptoms. At first I always found something to blame the depression on. But I began to notice that after being depressed for a few weeks or so, I would then start to show symptoms of a Crohn's attack coming. Sometimes my dosage would have to be change. Sometimes I'd need antibiotics to clear it up. Bet e-v-e-r-y time my Crohn's symptoms were successfully treated, my depression would disappear. How cool was that?

I think of other people that I've known that seemed to be suffering from depression. Usually it has been someone who had always seemed so positive and then one day it was as if their personality changed and they found everything to be depressing. I believe all were later diagnosed with a medical condition. I don't remember what each one had.

I firmly believe that depression is probably the first outward sign of a very real medical problem. I think since it shows up before any physical symptoms that it is thought that the depression brought on the illness. I personally believe that is backwards.

If I had any idea how to go about it, I'd find some grant money (you know, just pull it out of thin air) and do a very comprehensive study. I believe it could change the lives of many who suffer from depression.

I have watched my family suffer off and on from depression while battling Cushing's Disease. I have watched the depression lift as if by a miracle after surgery to treat the Cushing's. I am now seeing it return as there is a recurrence of Cushing's.

Anyone have any thoughts they'd like to share about depression? I'd welcome them.

Second time around

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In the middle of chasing a Cushing's dx for my kids, Justin & Jessica, I began to suspect that my husband also had this horrible disease. I never mentioned it because he really hates to talk about medical issues. He's getting a little better with that. Bill brought up the possibility himself. Then it was okay to talk about.

He was pretty adamant that we let his slide until the kids were taken care of. Well, a few things made him/us change our minds. One was the fact that he drove for about two hours in something similar to a blacked out state. He was pretty scared when he came to and was no where near where he should of been. He also had a hard time processing where he was from the road signs. He was in an area he drove quite often, and area fairly close to where he grew up. Normally he wouldn't of even needed signs to know where he was, the landscape would of told him.

I got him in to see the PA that the kids had been seeing and we told him our concerns. I asked about doing some testing for Cushing's and Andy gave us the orders. He also had several other things tested but at the moment I can't remember what they were. What I really remember was that Bill's first midnight cortisol came back at 39 and 7.5 at midnight is diagnostic. I didn't know whether to laugh (because it seemed we were on our way to getting answers) or cry because I didn't want it to be so. I believe he also had a high 24 hr. UFC (urinary free cortisol).

Silly me, even knowing how hard it can be to get a Cushing's dx, I assumed that surely the second time around couldn't be near as tough as the first. The kids had gotten their official dx about a week after Bill's "blackout." I decided that Bill should see a somewhat local endo that comes once a month to Goodland from Denver. I truly thought "how hard can it be the second time", I have so much more knowledge now. So we waited about six weeks or so to see this guy and I was pretty excited. Got that out of my system in the first 20 seconds! Dr. G looked over the labs we'd brought with us and the first thing he said was "Why did you test at midnight?" I knew then he would be no help. He said the results couldn't be used because they were drawn at the wrong time of day. The fact that he had two kids with Cushing's would probably not be cause to think that Bill could have it too. That would be really rare. Well, so what, that doesn't mean it can't happen.

He also wanted to test Bill's strength as Cushies quite often lose muscle. He had Bill sit with his arms straight out to his side and he stood above him and pressed down on his arms. Even though Bill's arms were shaking he couldn't push them down. He said there was no problem there. I'd already decided we wouldn't be back so I never bothered telling him that a year or more ago Bill's arms wouldn't have even budged. This is a man that used to pick up a couch, chair whatever and move it. Don't wait for help just move it. And I literally mean pick up the couch, he didn't drag it. So, yes, he was getting weaker. Dr. G had nothing to compare him to but other patients. I could go on and on about that visit but................. What for?

We then decided to cut to the chase and go to Dr. Friedman in Los Angeles. He'd helped the kids and I knew we would get somewhere with him.

So here we are one year later and getting closer to diagnosis. Bill has followed behind the kids by about a year. One difference being the kids had a dx before they had IPSS. Bill just had IPSS today and will have adrenal venus sampling on Wednesday. He had an adrenal and pituitary tumor show. Dr. F thinks it's also possible that he has aldosteronism. Hence the IPSS and AVS. Hopefully we will have some answers soon.

So no, second time around is not easier.

Both kids have a recurrence. Maybe all three can have surgery together! Only have to travel once that way. We should be so lucky.

I know there are others who suspect one or more of their children have Cushing's and will soon be in the same boat we are.

Emails that change your Life

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Just thought that I would share the two notes that changed my life.
1)
"Ted Friedman, MD, PhD" wrote:

Just when we thought it was safe to conclude you didn't have cushigns, yourlast ufc was 878 nl < 105 and 17OHS 13.8 nl < 10. It was done atlabcorp. Can you give lynne your fax # and she can fax itPlease collect 4 more ufc and request them sent to esoterix.
Theodore C. Friedman, M.D., Ph.D.
Associate Professor of Medicine-
UCLAEndocrinology Division
Charles R. Drew University--


2)
Dear Phil, I'm sorry I had to request your address again, it has slipped somewhere into the vast reaches of my computer and I knew I needed to get back to you on your MRI.
I have had a chance to go over things there, and here is what I think.
The latest scan (on the disc, from 09/06) is the one with best quality, and it shows an abnormal pituitary gland. The stalk is tilted to the left, a bit more than is really allowed in normal variation. This would imply a mass of some sort on the right (i.e., opposite) side of the gland.
On the dynamic images, there is a subtle suggestion of just that. The only kicker is that the abnormality isn't confined entirely to the right side of the gland, as there seem to be small patches of low signal, or "hypointensity," present on both right and left side.
In a circumstance such as this, we would consider operating on the pituitary if the hormonal numbers pointed to Cushing's. It's hard to give a specific tumor diagnosis here, but I'd bet that an exploration of the gland would reveal such.
MRIs in Cushing's can be very hard to sort out, some show nicely specific areas of tumor, others show patchy changes such as I see in yours (usually suggestive of tumor but not allowing the surgeon to pin it down to a specific part of the gland prior to surgery) and some show no change at all (yet can still have a tumor hiding within).
Have the numbers that Dr. Friedman has been gathering supported the Cushing's diagnosis as yet? In any case, I don't really agree that the MRI is normal, for the reasons given above....Hope this helps you,
Best regards, Ian McCutcheon


My energy is in the C-R-A-P-P-E-R

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I know that sounds harsh, but damn it, that’s how I feel.

I won’t lie, this past weekend was rough. I felt like I was back in my early recovery days, where it was hard just to get out of bed in the morning and all I wanted to do was sleep. Saturday morning I managed to drag myself out of bed at 10:30am (and I probably could’ve slept for another 2 or 3 hours).

To continue reading this post, please visit my battle with cushing's.

The girl who couldn't wake up

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5 years of misdiagnosis

"For five years, beginning in 1999 at age 16, Jenkins complained of fatigue, nausea, dizziness, memory loss and severe headaches. She frequently fainted. All she wanted to do was sleep."

A must-read article, 'The girl who couldn't wake up', details the events after Jennifer Julian Jenkins was in a wreck which caused the pituitary to be separated from it's stalk (infundibulum). She was misdiagnosed and mistreated for 5 long years.
In addition to the flu, Jenkins was diagnosed with anemia, gastroenteritis and a viral infection. A psychiatrist said there was nothing medically wrong with Jenkins, she was depressed and lazy...

..."At one point, my parents talked about putting me in a mental institution because no matter how hard they tried, nobody could find anything wrong. And the thought of being institutionalized really didn't bother me. All I could think about was, 'At least there, I could sleep without anyone disturbing me.' "...

Once a doctor took the time to do two simple tests for cortisol and thyroid, the problem became clear: hypopituitarism. When asked why it took so long for doctors to test and treat her appropriately, Jennifer says, "I hope some of the doctors I saw read this. I hope they slow down, listen to their patients a little more and take the time to figure out what is wrong instead of just chalking everything up to age or depression."

To read more, click here. A sound bite is included.

Jennifer's story will air on Discovery Health's Mystery Diagnosis December 15. Check your local listings for the time.


Orignially posted at survive the journey

This time last year...

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It was this time last year that I finally pushed myself to see my doctor to have tests done to see why I couldn’t loose weight, even though I was working out with a personal trainer 3 times a week. It was this time last year that I learned there was a real reason as to why I was so sick - it’s name was Cushing’s.

To continue reading this post, please visit my battle with cushing's.

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