Finding a Name for The Pain...

My name is Meagan Maureen Jenkins I am 26 years old.  I am married to my best friend Matt and together we have three beautiful children.  Owen, age 6. Isabelle nearly 5 and our baby is already just over 2.5!  Matt and I met the summer of 2004, at Kohls Department Store in Madison where I got a job as a cashier after losing my job as a CNA because of health problems, which I now know where and are related to my Cushing's diagnosis. 

Before I had the painful symptoms of Cushings my life was very different.  I spent a lot of my free time running around, swimming and playing.  I was involved in sports and loved playing “house” and dreaming of the life I would one day have when I built a family.  I loved running, I use to run 3-5miles a day and ran in many different races!  I spent time volunteering at my church, and helping elderly neighbors anyway I could.  I spent many weekends feeding the homeless and bringing them things they needed to survive living without a home.  My passion in life was and still is to help and serve others.  When I was between the ages of 10 and 11 I had two major surgeries and lost my right kidney do to un-diagnosed urinary tract infections.  Around 12 I started gaining a significant amount of weight and noticed stretch marks around my abdomen area.  This was chalked up to be because of hitting puberty—but I didn’t get a period until I was almost 16. 

Within a couple years after the unexplained weight gain  I started my first “real” job at Culvers.  After a few short months of working I developed pain all over—in my muscles.  I experienced sleepless nights and tossing and turning because of all the pain I was in and not able to sleep.  I went to countless doctors—and tried many different therapies & drugs.  Anything the new specialist recommended I tried. Nothing relieved my pain and I kept gaining mainly in my abdomen area and the stretch marks spread and were always a deep purple.  I made it thru high school with many different adaptions:  I was reserved a parking spot right near the front doors,   I had two study halls in the morning so that I could make it to my actual classes by mid-morning as I never seemed to “wake up” until around 10 or 11 am, I had two lockers so I didn’t have to use up energy walking back and forth thru out the day.  I had teachers and fellow students help me with note taking and an aid to help me take tests.  Around 16 or 17 my parents even bought me a special bed hoping that would help with the sleepless nights and the pain all over –it didn’t.

I was in so much pain, yet I kept fighting.  I didn’t know what was wrong, but I knew my only choice was to LIVE thru it. With this pain I felt like I couldn’t even help myself.  You see I’m a fighter, and fighting this pain was an “unfair” fight.  Without a name to it—without knowing the cause I couldn’t fight it with everything I had.  So I just prayed that one day it would reveal itself. 

I graduated high school and got a summer job at Kohls Department Store where I met Matt, who is now my husband, best friend and the love of my life.  He gave me the boost and strength I needed to keep fighting thru this pain.  I really wanted to go to college but with the memory fog and fatigue—completing college the way I wanted to wasn’t an option because I wouldn’t be able to get the grades I wanted—or use the degree as an RN because the job was way to strenuous on the body.  Matt and I became pregnant and had Owen in March of 2006, and were married in May of that same year.  Within 7months we found out we were expecting and we were blessed yet again in August of 2007.  Towards the end of each of these pregnancies my health started to decline, and never seemed to get better .  This was especially true with the birth of our last son, Nolan—who was born in January of 2010.  Nolan was born nearly 2 months early because my blood pressure was sky rocketing and I was having severe headaches, dizziness, and not to mention my all over pain was thru the roof.  I seemed to gain excessively around my pregnancies and I went up 115lbs within 3-5years.

  I’ve tried just about everything, and nothing takes the weight off.  Despite the pain—I’ve tried fighting thru it and exercised twice a day for over an hour. While I was on the “No sugar, No flour” diet I lost about 10lbs, after losing that initial weight NOTHING else would come off.  In fact after the initial weight loss I started to gain it back again.  It killed me to exercise.  In fact—I have to “collect up” energy to do most things.  To me, I’ve always believed if I couldn’t do something absolutely PERFECT-(the best I knew how) then I shouldn’t waste my time.  I’m learning still to this day that just because I may not be able to do things to the ability I once could—there are many things still WORTH doing.

Finally, after exhausting several diet plans and failing I chose to try going back to a doctor for help.

I explained to my PCP that I’d been experiencing many other symptoms in addition to the all over muscle pain—and

My symptoms include: Heat intolerance-I use to be cold ALL the time but the last 4years or so I’m EXTREMELY warm all the time, like I can’t sleep without the a\c on in the summer and in the winter I need a fan and the window open.  (I’m from Tampa, FL originally and let me tell you I use to LOVE the heat…now I can’t stand it) Hair Loss, I lose a lot of hair every time I brush it and shower. My hair use to be so thick—and beautiful. Purple striate –Yes, I do have three smalls kids ages  6, 4, and 2 years of age but I’ve had these stretch marks this color since I had my first rapid weight gain around the age of 12.  They have since spread and gotten a lot worse—in my arm pits all the way around my stomach etc…All over body pain, my muscles feel so tired and weak I can barely move—yet I do. I don’t have any other choice but to with three little ones at home. Hump, below my neck near shoulders-- I’ve had it since around 10—that’s when my mom first noticed it. Nausea, low vitamin D, thyroid antibodies and fluctuating TSH. Extreme Fatigue -I’m so tired.  I barely sleep at night, I get an urge or second wind around 9-930 that lasts until like 2am on a regular basis. Hard blood draws. Low Immune system--When I get the flu or sick with a cold or something I’m sick for like a month vs. everyone in my house has it a couple days.  G.I. issues, cramps that keep me up all night—amongst “frequent” trips to the bathroom. Facial Flushing- at various times during the day, along with redness. Bruise easily. Rapid heart rate, which at times makes me feel like I’m going to faint. Adrenal Crisis symptoms, so weak I could barely move, heart beating so fast it felt like I couldn’t breathe. Depression & Anxiety.  I never would have said before that I had this.  I thought to be “depressed” was to be shut away in this deep dark corner and to not really exist. Within the past 6 months I’ve realized you can be depressed and still want to live.  I am depressed.  Inside I’ve felt a deep loneliness.  I’ve even had days when I’ve wanted to give up. I have 3 beautiful kids whom I wouldn’t ever hurt in that way.  They push me to keep going! Matt?  He provides strength to my backbone. With the support of Matt, my kids and some very close family members and friends—I’m still here.  I’m still fighting.

Not knowing all these years what I’ve been fighting, I fought to still have a life.  I wanted to believe that it’d all one day just go as it came.  I didn’t realize that after each pregnancy my symptoms would only get worse because of the ongoing hormone changes in a pregnancy.  My three children, Owen 6, Isabelle almost 5 and Nolan 2.5 years old give me three of the best reasons I could ever have to fight for my life and win back my health.

My PCP thought that with these symptoms  I should probably see an endocrinologist (again? I thought.)  That’s what I did. I went to one a few weeks later, and he was confident that I had a few things going on, one of which was Cushing's Disease. 

I went home to GOOGLE: “What is Cushing's ?” Cushing's Disease is a specific form of Cushing's syndrome. It occurs when a benign (noncancerous) tumor on the pituitary gland, just below the brain, produces excessive amounts of a hormone called adrenocorticotropic hormone (ACTH). ACTH travels through your blood to your adrenal glands (located on your kidneys) and signals them to produce an excessive amount of an important steroid hormone called cortisol. When too much cortisol is produced—it poisons your body, causing many symptoms, many of which match up to the ones I experience.  I knew for sure that this was the answer I’d been seeking for all these years.

My cortisol came back only slightly elevated—so this diagnosis was dismissed.  I would not let go of it that easy.  It explained every symptom I had.  To GOOGLE I went. “Can you have Cushing's disease with cortisol levels that cycle?” Cyclical Cushings Disease.  Yes! You can.  It’s rare, but it exists.  While researching more I came a crossed a woman’s blog whom had dealt with Cyclical Cushings.  In her blog she goes on to talk about a specialist in Cushing's—Dr. Theodore Friedman. 

I got close with a few people who belonged to a Cushing's Support Page on Facebook—and one of them offered to help me start a page to raise money to get to Dr. Friedman in California.  Dr. Friedman does not take Insurance, so everything was going to be out of pocket.

 I went to my PCP and asked him if he would put three tests on standing order:

1.      Saliva-Cortisol

2.     24-hr Urine Free Cortisol

3.     Cortisol –Serum (Am, Pm, and Midnight)

He agreed to do so, and after reviewing information I gave him from Dr. Friedmans website was confident that I had Cushing’s it was just a matter of figuring out where all the pieces went.

Within about a month and half, I had enough to get to Dr. Freidman.  My new hope was going to begin January 10th, 2012.

Time quickly passed I made it to my appointment, My husband Matt went with me. I was nervous.  Mostly excited.  Excited from what I’d been told about Dr. Friedman.  That he really really listens.  He takes every symptom into consideration and never gives up on you.  It wasn’t just one opinion of him either, it came from numerous people, and that to me was remarkable—someone who would never give up? That makes a good Dr. GREAT.

 

The appointment wasn’t really like any other appointment, he mostly listened and observed.  For once in my life I did most of the talking!  My exam consisted of an exam that maybe lasted about 2-3min, in which Dr. Friedman stated that he couldn’t believe how large the hump was on my back.  (Hearing him say that—that was incredible for me because I know how many people hes helped with Cushings (as well as other various endocrine problems) so hes definetly seen a lot of “humps”!   At the end of the appointment he told me he felt Cushings was likely, however I needed to collect more evidence and have an MRI done on a T3 machine.  He saw something on my MRI from home but wanted a closer image.  I had an MRI done at Torrance in California, it took them over 45minutes to get the IV in to do the MRI with contrast. I picked up a copy of the MRI report later that afternoon as well as a copy of the MRI on a disk.  Sure enough! There it was—a micro adenoma, possibly even two!

Of course I still needed to collect more “evidence” but I was so on the right track.  No one could dis-prove this!

I went home and began testing. I did “marathon testing”.  I’d collect urine for 24hrs for 5 days straight, and then collect 10hr urines for the next 5 days.  Then in between there I would do a few saliva’s every night for a week at a time straight.  I caught LOWS and I caught HIGHS.  It was a battle.  Id get so discouraged by the lows but then I’d have a friend give me the pick me up I needed…and I realized the only person stopping me from a diagnosis (officially) was me.   I couldn’t be asking God to provide the answers if I wasn’t turning in the labs!  So, as a friend suggested I picked up my crown—dusted it off and put it back on.

…and so it came! The search was over! April 4th 2012, I had a phone appointment with Dr. Friedman and he said, “Meagan, I’m comfortable and ready to diagnose you with Cyclical Cushing's Disease and recommend you have surgery.”  I wanted to cry. I wanted to scream. I wanted to jump up and down. I wanted dance. I wanted to run, skip, hop—but I decided I better get in all my questions and listen to what he had to say.  After the phone appointment, I went outside and said very loudly “Matt I’ve just been diagnosed.” And then I just started bawling and Matt came running over and started crying too.

So have I had surgery? Am I on the road to recovery?  Do I have a cure?  NO.

I am now fighting with any energy I have to have the surgery I so desperately need.  I went to the UW Hospital and had a consult with a neurosurgeon, who believes I have Cyclical Cushing's—but wait for it—he as a surgeon has to follow HIS endocrinologists’ protocol.  So we wait for her to come into the room and she pretty much hashes out my entire work-up and says nothing about it is definitive of Cushing's.  What? Are you kidding me?  I’ve been diagnosed with Cyclical Cushing's by this country’s lead research doctor, you can’t take that away from me.  Her response?  Well, Dr. Friedmans ways are radical and he often thinks outside the box!  I said I am proud to say he is my endocrinologist and I am extremely happy he thinks outside the box—because he thinks outside the box I have a diagnosis.  No, you don’t she says.  “Cushing's is rare, Cyclical Cushing's is rarer we can’t be sure you have this by the tests he’s done.”  What happened to the oath they take as doctors, “FIRST—DO NO HARM.”  Don’t you think I’ve received enough harm and run around?

So here I am.  I stand before you knowing that I have Cyclical Cushing's.  I’m fighting for surgery, I’m fighting for my life.

 

“When the world says give up, Hope whispers…Try it one more time.”

Never giving up~Meagan