Monday, January 14, 2013

Let's just get this all out there....

I am writing this because this year I promised myself that I would make 2013 a more positive year where I will focus all my attention and energy onto positive friends, family, work projects, events, ideas, etc. Although a lot of people really dislike hearing that people had a horrible 2012...I really did. I am very blessed in several ways, but if we sum up my year it was a very tough and stressful one.  The second half of  my year was consumed with my disease and I FINALLY want to fill everyone in on what exactly is going on with me so that I can move forward and stop repeating myself to everyone that finds out about it little by little. I do not want this to be the main focus of my year since there is really nothing I can do about it at this point in time. So...BAM...we'll just tell everyone all at once so we can all focus on the fun stuff. 

So basically...before I got married in 2008 I put on 30lbs in one month which was very strange. I went from a size 2 wedding dress to a size 10 in one month. I was humiliated, felt ugly, and was horrified that I had to look like this on my big day. Not to mention the other symptoms that I was feeling. I went to my doctor they tested my thyroid and it's normal. My mom ends up seeing a special on tv about a women suffering from Cushings Disease and how she kept gaining weight etc and one night when I asked her to massage my neck she freaks out because I have big ball on my neck which happens to be one of the symptoms of this disease. It's called a buffalo hump. I feel like a camel. Haha! I bring this up to my doctor and they test my cortisol levels and they're a little high so he sends me over to an Endocrinologist. (this is a symptom of cushiness) She sees me and at this point I'm not too heavy, but I am 30 to 40 lbs over what I am used to weighing. She tells me to go on a diet. Keep in mind...I had already been particularly healthy with my performance schedule. Work out 5 days a week, 6 hours of dancing and singing on stage in heels 3 nights a week, and not a big person to eat snacks or sweets.  I was pissed. Was nobody listening to me???? I was working out when I gained the weight in the first place. Is it normal to gain 30lbs in 1 month??? I don't think so. 

So...I went on a diet and nothing happened. Then miraculously in 2010 I started to shed some weight. I was able to lose 25lbs in about a year. Although it felt like a huge relief to be fitting into my pants again (even if they were snug) all the low carb dieting and 10 mile stationary bike rides seemed like a bit much with such small results to show for all of my work. It stayed off for a bit. Then this past summer 2012 I felt some weight creeping back on. I started doing Jillian Michaels 30 day shred. I did it everyday like the program says you are supposed to. I GAINED 10lbs. :( I knew what was coming. I could see little red dots on my upper thighs which only meant that the stretch marks were returning. You see....with my lovely disease my skin doesn't heal correctly and is very thin. I get covered in these beautiful (sarcastic) purple stretch marks that prevents me from wearing swimsuits, dresses, or anything that would show any part of my legs because they're all the way down to my calves. If my cat scratches me even just a light  little graze will bleed, scab and then scar as opposed to everyone else who would heal in a week or so. Booring! I went to see my family doctor immediately as I was feeling the same as I was the last time. My face was looking different, (moon face), my hair was falling out again, I had horrible mood swings, only for him to tell me to go on a diet and do a workout his wife does. I wanted to punch him and cry.  I demanded to be re-referred back to my Endocrinologist. When I finally saw her we did some more tests and my ACTH levels came back high. The highest range is 65 and mine was in the 300's.  This is a huge factor that can point to a ACTH producing hormone. What is ACTH...a hormone our body releases. You can google it. ACTH tumors are either caused by a brain tumor or an adrenal tumor. This past year I have been poked more than ever, I have seen my doctor several times, spent a ton of money because I don't have health insurance, and I have felt so alone. 2012 really showed me who my friends are and I can tell you that maybe 2 of my friends have taken the time to ask how I've been and I was able to share this with them. A family member even called me an attention seeker and drama queen for bringing this up. I don't know how that could be when hardly anyone knows what's going on, but now you all will and not because I want attention, but because I want everyone to move on to the next subject. I have gained almost 60lbs since July 2012 and YES...I know everyone has noticed. I had not wanted to share this disease with anyone because I don't want anyone to feel like they can pick at my flaws or ask if something with my appearance is part of my disease, because if it is not it will probably be an awkward moment for both you and I. Besides...I don't want people focused on my changing appearance and feel like it's ok to say..."Oh Hayley...i can tell you've gained weight." I already feel uncomfortable enough as it is.   I had a brain MRI in November which was so scary because I am very claustrophobic. My pituitary gland came back oversized, but had no evidence of a tumor. I was so excited!!! So excited that my doctor cut it short and said that I could have a false negative because the gland is the size of a pea and therefore the tumor would be extremely small making it difficult for an MRI to pick up creating a false negative. You see...the fact that it is borderline oversized indicates a possible tumor. So...with my tests and MRI and gland being oversized she can only come to the conclusion that we need to let this thing grow and hope it makes it's debut on my MRI which will take place later this year. So yes...I have a possible brain tumor and it's out for everyone to know. As you can see..I have to wait a whole year to see if it has grown so there is really no point in dwelling on this disease and wasting time. 

My doctor doesn't want to send me in for a sinus sampling as this is a very dangerous procedure. As it is, when and if I get this thing removed it will require brain surgery which in itself is very dangerous. So...she's being considerate and saving me from 2 dangerous surgeries in hopes that Mr. Toomy Tumorsin will decide to grow.  Cushings is a very difficult disease to live with. My body hardly has any vitamin D which in turn makes it hard for my body to absorb calcium which can result in osteoporosis. My bones ache all the time. I get hot flashes like a menopausal lady. I have stretch marks everywhere. I feel like a new born baby growing out of clothes every month and my energy levels are zapped. So I truly apologize if I have been a scatter brain in the past 6 months between mixing Scentsy orders up, not filming for my youtube channel, looking tired at gigs, not wanting to go out, or even being rude at times. Shopping for new clothes a size up doesn't make any girl happy...haha add raging hormones from this disease and you've got a recipe for Bitchy! Haha! But, now that we all know what is going on I will open up a question and answer session in the comment section of my FB page below this blog post so we can all get it out of our systems because I really don't want to be talking about this all year. :) I hope you all understand and at this point feel free to ask whatever you want. I will try my best to answer it. You can also subscribe to my youtube channel (Hayley7363) as I have made a few videos about my symptoms etc to help other people who may suspect cushings disease. I have already received a few letters thanking me as there is hardly any content on youtube talking about this disease. PS...for all of you hypocondriacts...if you've gained some weight you DO not have this disease. Haha! It's very rare...only 10-15 people out of every million get this AND if you feel like I've described something familiar feel free to see your doctor. It's been a 4 year journey and it's still going. So..ask your questions or forever hold your least until my next visit. :)

1 comment:

  1. Hi Hayley! I just wanted to mention that when you are pregnant, the baby's stem cells can help the body repair itself in ways it couldnt before. I have been following your story and hope you can find some relief at some point. It all doesnt have to be solved with surgery they can put a person on cortisol inhibiting drugs. Basic anti-histamines can help with the swelling somewhat and reduce the cortisol production that way. You may want to look into getting a tech degree where you work in a hospital setting so you can get decent insurance. You have so much to look forward to and I hope you can keep working on making progress just to safe guard your future for your family. My mom has had osteoporosis and they found 3 fractures in her back so that is something to take seriously. Also eat as many anti-inflammatory foods as possible like ginger, green tea, celery, etc. And you may be on the road to recovery right now due to your pregnancy which would be great! Make sure and get enough sunlight and vit D supplements. Also make sure and get probiotics. They will help your body be more efficient at digesting the food you eat and turning it into energy. Also make sure you are getting enough iodine and or eating seaweed for it. Take care and best wishes for the new year!!!