Thursday, April 19, 2012

Day nineteen of Cushing's Awareness: The mental toll of Cushing's.

This blog is about Cushing's Awareness, but it's also about my personal journey.  It took me a good fifteen days just to get caught up on my current situation and it seems that every day something new seems to come up.  Later today I'm going back to the ENT to have them stick a scope up my nose again and clean out whatever is still causing that smoke smell.  Apparently I was supposed to have an anti-fungal in my mix of medications that was supposed to be put in my nebulizer, but it never got ordered.  I got a call from the company who handles my nebulizer medications today and they told me it would be roughly $90 for just the anti-fungal for a 30 day supply.  Plus, I'm almost out of my previous supply of two antibiotics, a steroid and the saline.  Apparently they changed the way they bill and something that should have cost $25 is now $90.  Apparently they are now able to bill for each individual ingredient that goes into the medication.  My fear is tomorrow I will find out that I have to pay $400 for something I previously paid a little over a $100 for and that even included the nebulizer.  Being sick is very expensive.  I'm unable to work, but we have to make ends meet on one income.

I put in a claim for disability and I really hope that I get approved.  I will be very discouraged if I do not, but I will continue to appeal it until I do.  This disease has really made me feel like a burden to my family.  My poor husband works to keep our heads above water and picks up all the slack with the chores that I am unable to do.  I really lucked out in the husband department.  He has stood by me through some really dark times and yet he still wants to be with me.  I think he is crazy, but I appreciate him more than I can ever express.  I know if the roles were reversed I would be right there to take care of him as well, but I just can't help feeling like such a burden to all my loved ones who are continually doing the things *I* should be doing.

Cushing's causes all types of mental disturbances.  Depression and mood swings play a very big role in this disease.   Any person who has been diagnosed with a disease that is debilitating and alters your life and your life expectancy would cause depression, then you add in the hormone imbalances and you have yourself quite a mental mess.  The mood swings can be all over the place.  Some people experience rage just like "roid rage."  Cortisol is our bodies natural steroid, so when there is too much of it we experience the same types of side effects as someone who chooses to abuse steroids. Something that would normally frustrate a person can send us over the edge in a fit of rage.  Another issue that I personally have is I am extremely hypersensitive to criticism.  I take things entirely too personally and am often filled with horrible anxiety over situations that I know I cannot change.  I have a very hard time of letting things go when I am upset.  Years ago I took several different types of medication for depression, but I didn't find any relief from them. I ended up getting off of all of them and just cope with my episodes of depression.  I honestly don't think of myself as a depressed person all the time, I think what I experience is situational depression.  I am depressed because my life isn't where I want it to be and my recovery is not even remotely close to where I expected it would be.  Every day I try to see the good in the situation, but I look in the mirror and see my cheeks puffing back out and I get very sad.  It's hard to hold on to hope every day when you don't see any positive changes, but I do still have hope.  I am a fighter and I will keep on trucking along because one day I will be able to finally say that I beat Cushing's Disease.  I hope you all stick around to see it, because it will be one of the best days of my life.

Another mental issue that happens to a lot of people with Cushing's is memory loss.  I never really experienced this until about two years ago.  I started taking the drug Diamox for my brain pressure issues and after that I started noticing that I was having a very hard time remembering every day words that I would use.  I had to actually stop mid conversation and dig around my brain to find the correct word to pull out and use.  I have always been known for my amazing memory and now I have to actually spell check simple words.  Yesterday I couldn't remember if you spelled the plural of son as sons or son's.  It's silly stuff like this that I am forgetting and it's very, very frustrating to me.  Someone can tell me something and by the next day I will have forgotten it.  It's one thing that Cushing's stole my body, but now it's taking my mind and I am not okay with that.  I feel my IQ dropping every day and it's upsetting.  I hope that I am able to reclaim my brain one day when this is all behind me.  I miss it.


  1. I've been noticing more IIH issues with me. I called our surgeon asking for a referral latter to our local county hospital. It's scary, but I don't want to have to take diamox, not when I'm not cured :(

    Hugs. I hope I'm here to see you beat this thing.

  2. Please keep me posted on how things turn out with that. I worry about you, girl. You are going to beat this too! Diamox stinks, but it's better than having your vision go completely and it helps with that intense pressure feeling inside of your skull. Hey, if you lose weight it can get better...LOL! I'll get right on that, how about you?

  3. thank you SO much for this blog entry! you have no idea how much it means to me to know that someone else knows exactly how it all feels. I have to stop mid sentence as well and figure out a word.I'm a hairdresser and one of my clients even told me that I was speaking really slowly. that was last year when I had some strength left in me to work, now not so much, I stopped working because of my health.
    one day I forgot my father in laws name. I thought about it for awhole day after I remembered that it's the same name as my husband's!
    I'm 25 and I feel like I'm 90.
    I feel the same way about how whatever I have, (cushings or not, will find out soon) has stolen my mind as well as my body. I'm a really, happy bubbly person, but now I'm on depression medication (that doesn't seem to be working) and I get into fits of rage that aren't normal for me.
    thank you SO much for helping me know I'm not alone.