Day four of Cushing's Awareness

I need to rewind a little because looking back I realize I left out some key information that may be helpful to someone.  In my early twenties I ended up with carpal tunnel in both hands.  I had to have surgery in both hands. Neither of those surgeries were successful.  Also, I was bike riding while camping and managed to slide down a hill and fall off my bike and get my leg caught.  Technically the fall wasn't that bad and shouldn't have caused an issue, but days later my knee started hurting so badly I could hardly even walk on it.  I ended up needing two surgeries on my right knee.  When the doctor went in he found that I had basically no cartilage left and that I had Synovitis.  He shaved some bone and told me it was a temporary fix and that hopefully my knee would get a bit better with time and therapy.  It didn't.  I still have massive issues and a painful bone spur that has developed in it, but it's just one of the many issues that I am sure can only be blamed on Cushing's.  Carpal tunnel has been a known issue with Cushing's, but at the time it was never suspected that Cushing's could be to blame.

So now I shall move forward to where I left off yesterday.  After the birth of my daughter I felt myself declining.  When she was roughly 18 months old I decided to get a job working as a Sterile Processing Tech at one of our local hospitals.  I really love working in the medical field and enjoyed being a part of surgery.  I have always had dreams of being a nurse, but it seemed life always had something else in store for me. Working as a Sterile processing tech required me to lift and sterilize surgical trays and instruments that weighed anywhere up to 50lbs day in and day out.  It was very rough on my body, but I was determined to work through the pain.  I didn't want to let this disease beat me to the point I couldn't work or work towards the goal of what I finally wanted to accomplish in life.  While working there I decided to make another appointment with the Endocrinologist I had seen who sent me to Mayo Clinic.  There really weren't many options locally, which is sad considering I do not live in a small city.  I went to see him to beg for him to do more testing.  He sent me home to do another 24 hour urine free cortisol test, another dex suppression test, and he also was checking my levels because of  my fluctuating blood pressure.  Everything came back normal. I suppressed on the dex test so at this time it was another dead end.  I was so discouraged.  Knowing you have a disease and not having the numbers show up when needed takes such a mental toll.  Once again, I lost my will to fight so I just continued living as a prisoner in my own body.

While working at the hospital I had that feeling that something was off in my body again.  I knew instantly I was pregnant again.  I raced home from work and this time had a digital pregnancy test that plainly says pregnant or not pregnant.  PREGNANT showed up on that test stick almost immediately.  I was in complete shock.  I had always longed to be a mother and figured my miracle card had been used up when I had my daughter.  Lo and behold I was indeed pregnant again.  My pregnancy with my son was for the most part much easier than with my daughter.  I managed to work through the majority of my pregnancy, but once again my blood pressure started spiking really high.  I was told I needed to quit my job for the remainder of my pregnancy.  Since I worked in a department that you really couldn't take that amount of time off, I put in my notice.  I was sad, but I had planned on staying home with my son for at least the first year of his life.  I waited so long to be a mother and I had no intentions of working crazy hours and never being able to see my children.  I am lucky my husband was able and willing to make up extra hours to help with the loss of income.  As with my previous pregnancy, my blood pressure would go normal, then spike yet again.  I had to have fetal monitoring done every week to make sure everything was okay with my son.  Everything always was fine.  I never tested positive for gestational diabetes which is surprising considering most people with Cushing's deal with insulin resistance or diabetes.  I still to this day believe God was watching over me and gave me both of my babies.  They are complete miracles and I will never see them as anything less.

During the last month or so of my pregnancy my back started to hurt so badly.  I am no stranger to pain and usually can work through pain that would make most people fall to the floor in tears.  This was so intense that I could hardly walk anymore.  I couldn't even lift my legs to get in the shower without help, lifting each foot forward was extremely hard to do and made me wince in pain.  I don't know if my son was lodged up against my sciatic nerve or what, but when my OB/GYN decided she wanted to induce me I was okay with it.  I knew I could not make it any longer and he was already measuring to be a very large baby.  The induction went well and I delivered him in one contraction.  I won't go into great detail, but I was ready to push for thirty minutes before my doctor showed up, so when she finally arrived my son came quickly.  lol  He weighed in at 9lbs 6oz.  A very large boy indeed and perfectly healthy.  Looking back at my photos towards the end of my pregnancy my skin was so discolored.  I was extremely tan looking when I shouldn't have had any tan at all.  I am positive my body was spitting out ACTH like crazy.  I had many areas of my body turn extremely dark. When there is an overproduction of ACTH it can cause a person to look extremely tan.

I was able to breastfeed my son, but it was no easy task.  I was up with him all the time and I still to this day do not know if he was getting enough, but I pushed through it.  One thing that was extremely noticeable in both of my children was they were SO colicky.  It was absolute hell.  My son was the worst of the two by far.  He just always seemed miserable.  I tried everything.  Gripe water, baby Zantac, changing my diet, different positions of holding him.  He was just a very unhappy baby and it made things miserable.  I am pretty sure that both of my babies were dealing with withdrawal from cortisol and all the excess hormones that had been flowing through my body.  It is the only thing that makes a lick of sense to me as to why they were so fussy.  My son was a very slow gainer with weight as well.  It turned out he had a tongue tie.  At ten months of age we had his tongue tie released and he began to gain weight properly and turned into a much happier child.  However, as my son was starting to bud and begin to show his real personality my body was failing me and quickly.

Every pregnancy affects the pituitary and for someone who already had a pituitary that was not functioning normally it was bound to cause issues.  My decline was so rapid.  I became a hermit, I no longer had the ability to leave as easily as I did before.  Lifting my arms to shampoo my own hair became exhausting.  I started gaining weight again, started noticing I was bruising much worse than before and was starting to break out in rashes in my scalp and on my right arm.  I went to the doctor about the new rashes and they were stumped as to what it was.  They sent me home with steroid creams, ketoconazole shampoo and other various things to try, but nothing helped. I no longer could sleep at night, but still had to get up with both of my children in the morning.  I was running on empty, but had to keep on for my children.  How was I going to keep up with this if no one would help me?  I had proof that I had intermittent elevated cortisol levels, but no one would pursue it and really keep testing me.  I was sure that before long I would be leaving my husband a widow and that my children would no longer have a mother.  I often would just start crying because no one would help me and I was sure that I would be knocking on death's door before long.

Little did I know that a regular vision check up would be the biggest turning point in my life.  Change was on the horizon, but I had no idea it was coming.

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Day three of Cushing's Awareness

In 2003 I went to the Mayo Clinic in Rochester, Minnesota.  I had huge expectations and dreams of how this would be the trip to change my life.  All my life I had heard how amazing they were and I really did believe this was going to be the beginning of the end for me.  I met with a wonderful Doctor there who did believe I had cyclical cushing's, but the issue with Mayo Clinic is they do not ever rely on outside testing.  In the span of one month I traveled to Rochester, MN from Illinois four different times when I felt I might be cycling.  Every time the test results came back normal, except for my blood. Apparently there was some rarities in my blood that made them think I had Leukemia.  I was scared to death when this was brought up.  Eventually it was ruled out, but to this day I still don't have an explanation as to how it is all tied together.  While I was there I had an ACTH stim test done, but those numbers came back normal as well.  It was becoming very frustrating to be me and not have the results show up when I needed them.  Basically at the end of the fourth trip there I was sent back home and mailed a letter stating all my test results and how there was a moderate suspicion that I had Cyclical Cushing's Disease. I felt one of two emotions with that letter.  One emotion was that someone did believe me, but I also felt dismissed yet again.  Left to die with no one to help me. Cushing's does and will kill someone if it is left untreated.

At this point I was pretty discouraged with the whole battle of trying to get help.  I saw the Endocrinologist back home who had been helpful a handful of times, but nothing really came of it.  I sunk into a very deep depression.  All my life all I really wanted was to be a mom.  My husband and I tried for seven years to get pregnant and with every period that would show up, I would mourn the loss of the child I never thought I would have.  It was absolutely devastating to me.  Everyone around me was ending up pregnant and I was left to my own despair and frustration.  During those two years I frequented the cushings-help.com forums, but never really posted often.  I had given up on fighting and was pretty much sure that I would never have the option of being a mother.  On May 5, 2005 my whole world changed.  I realized my period was late and that I was having horrible cramping that was not the usual cramping that I experienced at the onset of my period.  I had my hubby run to the store to pick up several pregnancy tests.  I had been through this many times before, but this time it was all different.  I watched a faint line show up on the test line.  My heart stopped.  I took another one, then another.  All three of them showed that I was pregnant.  Yet, I was still in denial.  I called a friend of the family who is a nurse and she drew my blood and had it checked in a lab that night.  That phone call changed my life.  I was indeed pregnant.  To this day, I am still in awe of the miracle that was created inside of my Cushing's ridden body.

My pregnancy was not the easiest.  I had several scares that involved quite a bit of bleeding where I thought I had lost my baby, but in the end everything turned out okay.  Towards the end of my pregnancy my blood pressure went up fairly high.  I was put on bed rest for a week, but a week later was able to go back to normal.  Somehow my blood pressure normalized.  When someone has elevated blood pressure in pregnancy, it usually remains elevated.  Mine went back to a normal level. This should have been a pretty good indicator that I was cycling during my pregnancy.  On Christmas morning of 2005, I gave birth to my daughter and to this day she is and will always be the best Christmas present and miracle I have ever received.  She made me a mother and I felt complete for the first time in my life.

I wanted so badly to be able to nurse my daughter.  I did everything I could and managed to keep at it until three months, but whatever hell was happening in my body was not allowing me to produce milk like a normal mother.  I was devastated and felt like less of a woman because of this.  Everyone told me I needed to not dwell on it and that it was okay to feed my baby formula, but unless they had been in my shoes they just cannot understand the devastation a woman feels when her body isn't functioning as it should and doing what should come naturally.  To this day I still have a hard time thinking of those days and how much it hurt me to always be angry and frustrated with this disease and how it was always playing against me.  After giving birth I lost all of my baby weight plus some within two weeks of having her.  I was amazed at how quickly it fell off.

The weight loss was short lived, as was the feeling of euphoria I had after having my daughter.  My body was busy plotting against me and I felt myself declining.  It wasn't extremely rapid, but it was rapid enough that I found myself not able to keep up with my daughter like I once had.  The pain became very extreme, but I pushed on.  At this point I decided it was time to start fighting for my life again.  What good was having an amazing child if I was just going to sit by idly and watch myself wither away into nothingness? Onward I went, but closed doors were always soon to follow.