Wednesday, April 4, 2012

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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  1. What are the chances that you could genetically have passed Cushing's onto one of your children? I know very little about maybe it's not a genetic thing at all, but I couldn't help but wonder as I was reading about you having babies. I just think it would be so incredibly sad if they ended up fighting this same battle that you've been fighting. :(

  2. When I got pregnant I was told that this disease was not genetically passed on. This information came from several Endocrinologist's. Since having both of my children I have met several families online who have had a spouse and two children have it, and I have also met two sisters who have it. There is one form that seems to be more likely to be genetically passed on and it's called Multiple Endocrine Neoplasia. There is a type one and a type two. It seems that they are more likely to pass that on and it can cause Cushing's disease. No one else in my family has Cushing's so hopefully I'm just the "special" one. It is something I worry about daily. I always look for the little things in my children, but so far they are perfect and healthy. I don't think I'd ever forgive myself if I found out it was passed on to my children. Even though I know I had no way of knowing at the time, it would still tear at my heart.

  3. Thank you for your question on genetic related Cushing's Disease. The answer isn't very clear cut. It is very possibly linked to family histories, but it doesn't have to be. My father has it, I have it, and my son is showing signs and symptoms. We think the root of our case is exposure to hazardous waste and pesticides. We have several families of siblings and fathers who have had to have their adrenal glands removed to end the cycle of Cushing's.

    The best thing to do is not rely on genetic diagnosis but individual symptoms to see if it's passed on.

  4. I didn't realize your father has it and that your son is showing signs. :(

    I am watching my kids like a hawk for symptoms. My daughter keeps getting really flushed cheeks and I worry. My son is extremely tall for his age so I worry about him. It's this never ending cycle of worry thanks to this disease.

  5. Your story is so similar to mine. I have not been diagnosed with Cushings yet but have started Growth Hormone. I'm hoping to go see Dr. F for the first time this summer. I felt compelled to comment after reading about your colicky babies! My son looked absolutely miserable the first 8 months or so. He cried non stop and I rarely left the house. I never once thought it could be because of my health but it makes sense!