Mary the Medical Mystery

Left to right- 2008 2 months before my surgery when I was at my worst. 2 months after my surgery and 2011 when it started to show again.

I am fighting what seems to be a battle I will never win.
A battle I am tired of fighting.
A battle I am forced to deal with every single day.
 Cushings Disease has been a part of my life since 2007- too long as far as I am concerned. To think I am actually considered one of the lucky ones makes me sad. I am sad knowing there are so many others who are not yet diagnosed. Sad that there are those who are not yet treated.
I have also had several close calls and times when I thought I would be going back to the Mayo Clinic. Times when my blood work and/or symptoms were abnormal but not alarming but today it is not an if but a when and for what.
So almost 5 years after my original diagnoses, I am facing the beast head on- hoping this time I will win! I am one test away from making a decision that will change my life in so many ways.
 But for now, for today I need to get it all on paper.
Why? Because I must find a way to discuss my situation without falling apart. When people ask how I am doing, it is difficult, and I am always so close to losing it. When I write my story down, I write not for people to feel sorry for me or to pity me,  but because I know the more people that know, the more who will pray and knowing people are praying for me brings comfort. I never want to use this disease as an excuse for the way I act,but it does come out in my behavior and reactions to what to some may be minor upsets but to me they are quite large.  I also know that it is all important information and I must keep record of it for my family and my doctors. I also write because it helps ME to gather my thoughts and to process my medical mess.
Cushings Disease has been the hardest thing I have ever had to deal with.  Some doctors will go their entire careers and never see a patient with cushings- it is a rare disease. I have done so much research, possibly more that the CIA does and I still don't understand it.
 When my doctor and my friends have asked me how I knew it was back  I say:

I have once again become THAT person who is always tired, always sick and always with a pain. It is hard to have become that person again who I do not know or recognize. I wish I could be a typical mom- running committees, volunteering, being more active at church, but my reality is, it is just hard to be...On a daily basis I deal with
*Short term memory issues. I can only do one step at a time. Give me 2 and you are in for a laugh.
*word retrieval. I find myself searching for words a lot.
* I have no stamina.
*I have feelings of isolation and because of my sleep problems, I am a roller coaster of emotions and lack any sort of motivation.
* I am usually a motivated person but lack of energy and lack of interest now hinders that.
* This disease has made me unreliable and I hate that.
* I do not know what morning will bring and my body aches every minute of the day.
* My ACTH levels have been on a steady rise for a long time and the migraines are back.
*I have to force my brain and my body to work together just to do the things I used to enjoy.
* Little things, good or bad go to the extreme in my head.
* Depression
*Anxiety
*Stretch marks, a side effect of the disease ( this makes me mad. I birthed 2 children without a single stretch mark)
* Loss of friends. This is the one I struggle with the most because it leaves me hurt. I have friends that have been loyal to me, that forgive or ignore my shortcomings, who know that underneath this illness, I am a good person. but I also have friends that do not understand, that have distanced themselves, and friends that no longer call. Lets face it, I am a high maintenance friend, To some it was OK some it was not.  I know it is OK because the friends that matter the most are by my side now- still some days it stinks!


I am what I once heard described as "CUSHINGS-FULL THROTTLE" All symptoms, all the time, to the extreme.
Kevin and I have always agreed that we would wait it out until the time comes where it is taking over our lives, and that time is now because my symptoms are reaching the point that waiting just doesn't make sense anymore.
So after an especially trying summer of denying we are prepared to deal with it.
I have completed several tests here that have all indicated a recurrence. On Monday, I will have an MRI with dye contrast and I am hoping for a BIG FAT TUMOR. I hope it screams out to the radiologist, "Come and get me." because that would make it a little less complicated.

IF THEY FIND A TUMOR
I can repeat the surgery I had in 2008, which is basically brain surgery through my nose. If the MRI  shows a visible tumor this would be the treatment of choice and it SHOULD be what I hope for BUT this is a hard one for me because this time I know what it will be like  and the reality is, it is because of this knowledge I am more terrified than the last time. I know the risks and I know how I will feel.This will include but not be linted to:
Excess bleeding of the nose- we are talking bath towel, not Kleenex.
The stuff they shove up your nose after surgery to keep your brains in place hurts.
Other risks include meningitis, spinal fluid leaks, spinal headaches and oh boy the congestion. Not the sniff, sniff kind more like blood clots in your nose the size of Texas and this is made worse by strict orders not to sneeze or blow your nose for 2 weeks.
After I returned home, there were days I could not get out of bed.  It is knowing all of this that makes it worse this time.
So what will they do if they do not spot a tumor? I can either undergo a bilateral adrenalectomy or I can remove my entire pituitary neither of which sound appealing. Both will require a lifetime of hormone replacement. I cant really figure out any pros to these options other than they have high cure rates. I do know my recovery would be much longer and because my body would no longer produce cortisol I would require a lifetime of replacement therapy. the other issue I have is that people die in the months or even years following surgery from adrenal crisis. It happens a lot! Yep! pretty scary if you ask me!
So Monday is the day of the MRI- I would hope for immediate results but know it will take time. to send the film, to read them and to get back to me. I will try to be patient. I know God's plans for me are not hindered by my fears and my struggles so I will try to "be still and know"