A Very Happy New Year to All!

0 comments

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!

0 comments

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

0 comments

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...

0 comments

Low Vitamin D levels in Type 1 Diabetes

0 comments

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.


Read the full story

New drug that could bolster the immune system

0 comments

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.




Read the full story

A tree full of Christmas memories

1 comments

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?

0 comments

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.

Read the rest of this post here

Why Not?

0 comments

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.

Read the entire story...

1 comments

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

2 comments

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

0 comments

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

0 comments

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

0 comments

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

1 comments

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...

1 comments

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.

Cushing's: More prevalent and hard to diagnose

0 comments

New research has shown Cushing’s syndrome to have a substantially higher prevalence than previously thought

Diagnosing and treating Cushing’s syndrome is sometimes just as difficult as it was 70 years ago.

See the full article at survive the journey.....

Noninvasive Medical Technologies Helps Make Young Tennessee Woman's Wishes Come True

0 comments

Due to surgery to remove an invasive pituitary tumor, Kristin Shumpert of Oak Ridge, TN, suffers from diabetes insipidus. Regulating thirst and urination becomes a difficult task with DI when controlled by vasopressin. Over medicated, one can become overhydrated and suffer water intoxication. Undermedicated, there is a danger of dehydration.

Kristin's mother read about a device developed by Noninvasive Medical Technologies, Inc.: "ZOE(TM), an FDA-approved noninvasive medical device that monitors a person's fluid status using bioimpedence." She contacted the company, and long-story-short, they were able to help Kristin.

Read more....,

Also posted at survive the journey

From last Spring: A repost...

0 comments

I was talking online today with an old friend and Natalie's name came up.  It is so heart-wrenching when another Cushie dies :(

I still hate Cushing's.  It has taken away some of my best friends.

Read the rest of this post...

Top 5 things that pick me up when I’m down

0 comments

OK fellow Cushies, let’s face it, we all have moments when we feel like we’re carrying the weight of the world on our shoulders or we’re faced with never ending obstacles. Just simply living with the after effects of Cushing’s is enough to make me what to stick my head in the sand and cry ’til my eyes bleed (although, I’m proud to say those moments are now far and few between).

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

Cushie Depression

0 comments

Reprinted with permission from the Message Boards.

Honeybee says:

I went through my cushie folder and found this, a letter from my journal..

I was going through my folder, and I found a entry in my journal that brought me to tears and reminded me just how difficult it is living with this disease. This was before I had even heard of Cushings. My depression was very very bad. One of the very 1st things that I noticed that was gone after surgey was my depression..all these feelings were due to
cushings.

"Since I have nobody to talk to, I am going to write, I talk to myself all the time, this way seems a little less nuts. I have decided to not fight anymore, not throw back anymore pills. I'm not going to go threw anymore dr. appts. I honestly do not see the use.

I don't feel wanted in this life, but I don't feel like God wants me in his heaven either. I'm so tired of asking why and getting no answer..why am I here? I have no purpose, here or anywhere. I am a waste, a total burden. Everyone I have ever loved does not at all care whether I live or die. It will probably be weeks if not months before anyone knows I am gone.

I just want to be understood a little bit, sometimes. I really do have feelings, I'm not mean, I want hugs and want to give hugs just like everyone else. I am not destined to be happy, here or anywhere. I have been a better person for a long time now but still I am always paying for my mistakes, it will never end.

I cry every single day. Mostly because I'm so scared, and alone. Alone even though I am married. Ive lost everything. My mother, father AGAIN and for the last time, my sister again , and also for the last time. My best friend Tara, who turns out I never really knew, even though I was my most true self in everyway. She said "you will miss me before I ever miss you" She was right, and that kills me. Ive lost my best friend and husband Tim. I don't know how, I don't know exactly where or when, all I know is he left me mentally, I lost my husband, my lover, my everything in him. He's gone. My marriage is ruined, over. I lost my children, my teenager, who is the only person in this entire world who might miss me, probably just because Ive known her so long. She has her own problems. E is determined to kill me I think. T must hate me , I understand why, I'm sorry for the pain I must cause him. Most of all I have lost myself. I am a wreck. Most days I try to hide it, some days I'm sure it shows, and those are the days I am unpredictable, sometimes I am angry, and I come off as being a nag or a b**ch. Other days I am sad, well most days I am sad. I cry alot more than I'd like to admit. I try to not wear mascara too much, so that nobody will know I have no hope left.

I used to find things funny even when stuff was bad. Not anymore. I lost my looks. I am gross, my hair has been falling out and turning gray from stress I suspect. I am always broke out, from stress I suspect. I am so ugly. I don't even look in the mirror anymore, because I cry. I am so fat. I weigh 200 lbs, I am so disgusting. That alone makes me want to kill myself. I have lost my health, terrible blood pressure, worse than anyone I have ever heard of. I take so many pills. My heart is probably really f***ed up, my kidneys hurt now too. I won't lie and say I'm not sraced, because I am terrified, just because of the unknown. I just don't want to feel like this anymore. I'm so lonely. I feel so unwanted. I feel like T doesn't want me. He just feels bad for me. I feel like he doesn't want to be home with me. I feel lke he is doing bad things when he is out. I can't compete with his job. He says he loves me, but I can't see it anymore.

I'm pathetic, I have nowhere to go, nobody will help me, so once again I'm stuck. Dependent should be my middle name. So I'm going to change everything. He and everyone else is off the hook now. I won't b**ch or nag to T anymore about falling asleep on me, about all the stuff with his job. He always says "I don't go out with the guys like everyone else" which tells me he wants to. He can now. I won't say anything anymore. He can do anything he wants, he doesn't have to be held back by me anymore. I won't b**ch about how I don't feel good, I will keep all my pain and worry to myself. I'm not going to ask for anything anymore, it's all a waste..like me. I'm not going to take any of my pills, I just want to let God do what he needs to do with me. Things will be alot better for everyone to not have to deal with me. No more of "walking on eggshells". No more of my "issues".

Who did I wrong in my past life?? Must have been someone important because any and everything that could happen to a person has indeed happened to me. I just want to be happy for more than a few seconds. I wanted to love without fear and to be loved without judgement. Loyalty, understanding, contentment, faithfulness, truth, passion, fidelity..into eternity, all a dream for me, never my reality.

Cushing's: it's a family affair

0 comments

This holiday season is an important milestone for me - and my family. Last year, at this time, I was under going testing to find out what the hell was making me so sick. Shortly after Thanksgiving, I learned that I had Cushing’s syndrome and had no idea of the struggles that lie ahead.

To continue reading this post, please visit my battle with cushings.

Mind body balance

0 comments

I’ve been anxiously waiting two weeks to meet with my new endocrinologist. I had fears of him telling me that something else was wrong with me or that nothing was ever wrong with me. I know, I know - totally irrational. It’s hard not to feel that way when I spent so much time trying to explain or convince previous doctors that something was wrong with me.

Click here to continue reading.

CT Scan, 2

0 comments

Sheesh!  I drank all the barium like a good little girl and got to the hospital in plenty of time.  I filled out all the extra paperwork as requested.

Finally got back to the CT scan room.  ESL person asks why I'm supposed to be doing this with contrast.  I told her why my doctor, my specialist wanted this.  I wasn't doing it for fun.

She said, well, I've never had contrast before for CT scans.  I said that my doctor wanted it this time.

She said I'd had 4 CT scans for kidney stones since 2006, never had contrast.  I said I'd had 1 scan for kidney stones.  After that, they were all related to my kidney cancer.

She asked if I had my BUN/creatinine results.  I said that I didn't have that test done recently.  She said that since I was having iodine contrast they would need to be sure my kidney was functioning.

I said that my doctor had not ordered iodine contrast.  He knew I was allergic, it wasn't needed for this test, just the barium.

So, she went to talk to the radiologist who called my doctor who knew what he was doing when he wrote the order in the first place. 

I went back out and waited during this conversation.

She finally came back and said that my doctor didn't want the iodine contrast dye, just the barium because I had only one kidney.  Hello!  That was what I said in the first place but I'm just a patient and how could I know.

So, too much time had passed since I finished my barium at 11:30AM and I had to drink more.

The CT scan lasted for about 10 minutes after all that.

Originally posted here:  CT Scan, 2

CT Scan Time

0 comments

I'm sitting here drinking my berry smoothie barium, getting ready for a CT scan this afternoon of my abdomen and pelvis.

It's partly because of my kidney cancer that I'm having this and partly because I was having pain in my left side and now in my right, too.

My kidney doctor is concerned about the left side pain because of it's location near the colon.  I have a strong history of colon cancer.  Both parents and my aunt had it, twice each.

The right side pain is something newer, up in the ribcage area.  It started by feeling like my liver or some other organ was being pinched by my ribs when I bent over but now it seems to be a dull ache, there all the time.

Hopefully, they won't find anything but the yummy barium smoothie will help tell the tale!

Originally posted at CT Scan Time

Sleep, Tired, Nap, Sleep...

0 comments

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. 

Read the rest of this post here.

My two cents worth

0 comments


The authors say the biochemical evidence is "unremarkable". I disagree. To read more: Just how do you define "unremarkable? Geez...

Mirror, mirror...

0 comments

Today I walked past a mirror and thought "Ugh". I usually think that when I see myself, but today it brought up memories of the day a doctor finally thought there might be something to my suspicions that my health problems were endocrine. I'd taken in a picture of me and my husband that was taken 5 years earlier, at our 2nd daughter's high school prom. The doctor, who hadn't known me for 5 years, looked at me in astonishment and said "You don't look anything like that. I wouldn't recognize you." I said "That's what I've been trying to tell you." That is how my Cushing's testing journey began. Two years later, I underwent transphenoidal pituitary surgery and had hopes of seeing my old self again in the mirror. That was nearly two years ago, so I've been on this rollercoaster for 4 years now. I still don't see my self in the mirror. I wonder if I will ever just accept as fact that that person is gone for good?

The Journey Begins...

0 comments





Lifes HighwaysMy name is Steve Owens. My online friends call me sowens. I am a husband, father, son and brother. I have many friends both near and far. I am a veteran. I have a good life and only a few regrets. I am also a Cushing's survivor. Cushing's is a disease that strikes about 200 people a year in the US. In reality, it probably strikes many more who never know what it making them sick. I am fighting recurrent Cushing's, in my case a brain tumor, which has come back stronger than before.
It is my hope to write about this part of the journey to show how the process works. Since my surgery failed at MD Anderson and I have no cure, I have a few options left to try and get better. One of them is a bilateral adrenalectomy or BLA for short. My pathology shows I have corticotroph hyperplasia, which we are told is a rare form of Cushing’s. Another poke in the head probably won’t work and the BLA seems the best option.

Click here to read the entire story

We Are Not Alone: Learning to Live With Chronic Illness

0 comments

MaryO'Note: I don't usually write, or post, book reviews, but I just love this book and I'm so glad to see it back in print. I've owned this before my Cushing's days, when I "just" had osteoarthritis - another disease I wasn't supposed to have, at least at my young age.  This book gave me such hope and inspiration when I felt I was so alone with my "stuff".  It still sits on my bedstand and I read it when I'm feeling down and helpless.

I've bought copies for everyone I know who might benefit from this - and that's practically everyone!  Because it's an older book, I got lots of copies at second hand book stores and gave them to all my friends.

So, I'm glad to see that it's listed on amazon again and anyone can get it brand new .

We Are Not Alone: Learning to Live With Chronic Illness by Sefra Kobrin Pitzele

chronic-illness Book Description
This is an essential layperson's guide to coping with chronic illness-- or the 50 million Americans who suffer from diseases such as arthritis, diabetes, and multiple sclerosis, and for the people who care for them.

With firsthand insights of one who has been there, Sefra Pitzele details every phase, from the frightening onset of disease through the process of readjustment to the successful adaptation to new norms. She addresses the issues that most concern the chronically ill: dealing with relationships; participating in sexual activities; helping your doctor help you; managing pain and depression; maintaining humor and dignity; more. She details adaptive living strategies from new ways to shop and cook to ingenious modifications at home and at work. There are nationwide listings of helpful organizations, support groups, products, and services. 44,000 copies in print.

About the Author
Sefra Korbin Pitzele is Secretary of the National Sjogren's Syndrome Association and serves on the Operations Committee of the Minnesota Chapter of the Lupus Foundation of America. She is co-founder, co-publisher, and Vice President of ADVANTAGE: A Magazine for People with Chronic Health Conditions. She is often the featured speaker at healthcare conferences and on radio and television shows.

Originally posted on Cushing's & Cancer

I just liked this Motto

1 comments

life

It seems that there have been so many storms in my life, some major, some little summer showers.

I guess everyone has these storms, but it seems so much worse when it's happening to us.  I know I always have felt so alone with my various things, whether they be illnesses or anything else.

When I had Cushing's, there was no one else around who had ever heard of that, even in dogs.  It was something that "no one" got, therefore I couldn't have it, either.

When I got kidney cancer, I wasn't supposed to get that, either.  I was supposed to be  an older man of a different race who smoked and had polycystic kidneys.  According to my family history,  I was supposed to get colon cancer.  Maybe I still will.

I think the feeling that we are alone with whatever is a universal thing.  I see it on message boards all the time, people thinking that they are the only person to have whatever symptom.  But they aren't.  Lots of people seem to be dealing with all kinds of things.

Thanks to the Internet, more and more of us are able to find each other.  I've been able to find other Cushing's sufferers, some who have had Cushing's even longer than I have.  there are younger women with kidney cancer, too.

Thanks to the Internet - it's helping me, and lots of others, dance in the rain.

Originally posted here:  I just liked this Motto

Showing my Stripes

0 comments

Showing my stripes
What a surprise! Shocked are you? HaHa. First impressions are very important and most people will decide if they love you or hate you in the first three minutes. Will it help that I display my zebra stripes right off?
Where did I get the feeling that you are comfortable with my naked belly? Doesn't matter! You saw it anyway and I must believe that you are as impressed as I am. Or not.

Blech

0 comments

I haven't done a "personal" post in a while, and debated about doing this one. However, I think it's important to document what honestly goes on in the life of a person who deals with the repercussions of Cushing's on a daily basis.

As a quick recap, I had transsphenoidal endoscopic surgery to remove a pituitary adenoma almost 2 years ago. Prior to the surgery, I had a very Cushie body with numerous symptoms, and had most of those for a very long time (over 20 years). I was already suffering from hypothyroidism, multiple low hormones, and was probably growth hormone deficient, but I didn't test for that prior to surgery.

Since surgery, I have been diagnosed with adult growth hormone deficiency along with my hypothyroidism and my anti-TPO keep going up and up, indicating an auto-immune problem with my thyroid. I have very low levels of estradiol, LH, FSH, and testosterone. Also low are potassium, vitamin D, and ferritin. After surgery I had a problem with diabetes insipidus, but that gradually decreased. I still have days when I think I may have a bit of that, but not often.

Right after surgery, I made so little cortisol on my own that it was next to nil. ACTH was also under the testing limits. I was on 20 mg of cortef in the a.m. and 5 in the p.m as a replacement. Gradually, my levels have come up and a few months ago I was able to wean down to 5 mg a day. I was able to maintain that for the most part. Except....


Click here to read the rest...

Here am I

0 comments

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!"


We are the orphans. We are the zebra's in a world of horses. The ones who have a rare disease many have never heard of. We have no famous speakers to bring life to our voices. We have no sports stars to put a face on Cushing's. We have no pink ribbons. We have no simple tests to tell us if we have it. If no one cures us, our lives will be shortened at best and ended at worst.

Click here to read the entire story

Zebra Crossing

0 comments

"If you hear hoofbeats, think horses, not zebras."

That statement baffles me. Should I be surprised to see a zebra? I'd LOVE to see a zebra!
I rode a pony for the 1st time when I began kindergarten and met the neighbor girls down the road. After school we would saddle their ponies and trail ride through the woods and cornfields. Horses were exciting to me. I dreamed of owning my own horse and living in the West as a cowboy. Oh to be a boy again!

Before I got sick( think ZEBRA), my wife had an opportunity to get a job caring for 3 horses belonging to a local woman who trained and showed warmbloods. Was I jealous. But after some time, the lady offered us an apartment and a shared job fulltime running the stable and property. 9 years, and 11 horses later we had to quit as my health was failing daily.
Why was I sick? In Spring of 2000 I missed 9 weeks of work. My primary doc ran a blood test and it came back positive for Epstein Barr virus( think HORSES).

While that was an obvious answer, there were other symptoms that he could not explain. Frustrating to me was his lack of interest in "why". Every 15 minute appointment was little more than telling me that my blood pressure was up, my fasting glucose was high, my cholesterol was off and my weight was too much.

But "why?" I was eating a light breakfast of Cheerios and milk, lunch was a plain lettuce salad with carrots and tomatoes and dinner was rarely more than chicken or a hamburger.

I know now "why" and "what", but it took alot of digging and research on my own. My pcp was content to increase the dosages of all 7 of the meds that he had prescribed to cover the symptoms.

One symptom that I had shown to him and had been a source of slight embarrassment to me was the purple racing stripes that had spread across my belly and thighs. He had no idea and other than a passing interest in the color, nothing. 15 minutes, in and out.

While sitting at my computer in my underwear( more often than you think ladies! LOL), I Googled "abdominal stretch marks". That was it, that one simple computer search and I had diagnosed my failing health, began a quest for a doctor who was interested in solving the rest of the puzzle, and treatment.

That was in July of 2005. I had pituitary surgery to remove 2 tiny tumors on Oct. 31, 2007. I am on only one prescribed med., down from 7 at surgery.

More baffling to me than the horses/zebra analogy is the lack of interest from doctors. You would think that most would love the chance to have an intriguing case to solve. Where are the Perry Masons? The Sherlock Holmes'?

Instead the easy way out is to prescribe meds to mask the symptoms and hope that the patient feels good enough to not come back for a while.

I missed it!

0 comments

With all the hubbub over the weekend, and finding out yesterday morning that my best friend was in the hospital, I completely forgot that yesterday was the 21st anniversary of my pituitary surgery at NIH.

I even had a reminder on my calendar, a notice on the calendar section of the message boards, all kinds of places.  But it just slipped my mind.

Maybe this is a sign that I should somehow forget that I had Cushing's, that I should move on with my life as a "cured" Cushie.

My new life, in addition the the panhypopituitarism, involves kidney cancer and, for me anyway, that's a zebra disease.

I consider this a zebra disease because it's one that I shouldn't have had.

For one thing, I "should" have had colon cancer because both parents and an aunt had it twice each.  Of course, there's no guarantee that I won't get that, too.

Anyway, other "zebra" reasons are the risk factors for kidney cancer aka renal cell carcinoma.
The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:

  • Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.

I was younger than this.

  • Sex. Men are more likely to develop renal cell carcinoma than women are.

I am female

  • Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.

Not me!

  • Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.

A Cushing's gift

  • High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn't clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.

Never had this until the kidney cancer.  It went away immediately post-op.

  • Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.

What?  Me work?.

  • Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.

Nope.  Some sites also list polycystic  kidney disease.  I don't have that but half my husband's family does.  Hmmm - wonder if that's contagious

  • Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.

I've wondered about this but, you know, it's too "rare".

  • Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you'll develop one or more renal cell carcinomas.

Not that I know of. 

So, yesterday after I went with DH to his doctor, I went to see my new zebra doctor - my kidney surgeon - for pain I've been having.  Over the summer he said if I "wanted" my CT scan earlier than my next visit, just let him know.  I've been having pain in my abdomen and he is sending me for the CT I requested.  Plus, he suggested I call my gastroenterologist just in case there's something happening in my colon. 

Oh no!  What if I finally get the disease I always felt I was destined to get?

But, like Scarlett O'Hara, I'll think about that another day and head off with DH to see his new surgeon...

Originally posted here.

Losing Martha and other Cushies

0 comments

This post was originally here:

Drat!

Another Cushing's patient has died :( Over the years that I've been running the Cushing's sites, we have lost at least 16 Cushies - about 2 a year - that I know of. I wonder how many others there have been that I don't know about. Or they weren't even diagnosed yet at the time that they died.

Somehow, we have to get the system improved, to save the lives of more Cushies, known and unknown to us.

Even before I heard of the Internet, while I was waiting for surgery at NIH, a woman with Cushing's died. I would not have known except that there was an article about her in my college alumni magazine. She had been my age, lived in my city, graduated from my college with my major the same year as I did, was also a teacher, had my doctor... It could have been me. Thank goodness I didn't read about that until after my surgery.

The patients I have known about who died - 3 I have known very well. We had gotten to be good friends over the years. We managed to share good times, laughs, times of thoughtfulness, times of sadness, many phone calls and visits, adoptions of children, births of grandchildren, even a vacation! Just like "normal" friends. But we were bound by the bonds of Cushing's and we understood each other.

Even though I didn't know Martha who died last night, her death saddens me deeply. Too many deaths, too young.

Someday, I'd love to meet a Cushie in her 90's or older!

Martha's Story @ Survive the Journey

0 comments

Stacey and Martha had been together for 11 years. During most of those years Martha struggled with IBS and acid reflux. About 6 years ago, they noticed her cheeks were getting "bigger" but her legs and arms were very thin. In fact, until the last 5 years she was a thin/normal woman. Stacey said she would squeeze Martha’s cheeks saying "look at those chipmunk cheeks".

Five years ago her health started dramatically changing. She had an ovarian cyst burst, then after problematic periods she had a fibroid tumor removed and a D&C performed. After that she never had her period. Her GP told her she was going through early menopause. Her strength was never the same. Stacey and Martha thought it was because she was pushing herself too hard with a long commute and getting up very early in the morning. To read the rest....

.