How do I tell you about my illness and what it does to me? Do I start with today (so far)? Do I tell you about yesterday or last month…year? Do I start at the end and work my way back or do I start from the beginning? It is really hard to say. I want you to understand how complex illness is without explaining it in a complex way? The only answer I have is to break it down into parts. I have had at least 70 symptoms from Cushing’s (never counted them before today…always told my friends more than 40…guess I was a little off).

About six I don’t have now thanks to the help of a good doctor but as the disease and treatment progresses more will be added. Of the over 60 remaining symptoms they fall into three categories those that appear when the cortisol is the highest, those when it is the lowest and those present during transitions (raising or falling). I have been able to identify a pattern (with the help of my doctor) of symptoms that are indicating that my Cushing’s is Cyclical. We have not been able to identify (or visualize) the source (tumor location yet, but it is still suspected based on test results that it is in the head). More testing this week was conducted to identify the 3 peaks and over the next weeks the 2 troughs necessary for a formal “Cyclical” confirmation…but the pattern kind of speaks for itself. It isn’t funny that I have been telling my mom for years that “whatever is wrong with me seems to follow a pattern”… glad we figured that out 3 years after I started saying it.  

The most debilitating symptoms for me are: (some are worse somedays this is today's perception)

Spontaneous bruising (walking around in grocery store to get 10 items come back to car…vein busted in thigh… did not strike it on anything just exploded)

Sore joints -knees/ankles/elbows (Ouch)

Backache - really bad after raising arms (imagine lifting your arms to put on makeup or brush your hair and by the time you are done feeling so bad you have to laying down and recover before doing anything else)

Lack of & decreased energy (zzzzzz… did you say something...zzzzzzzzzz)

Brain fog (severe) hard to concentrate, understand remember things (might be my least favorite as a social person, student, mom etc. Though it may come in handy I hear that teenagers give you a lot of blank stares and this enables me to give them right back.

Hard time articulating thoughts (sometimes)

Severe constipation (days to weeks without)

Eye pain with compromised vision

Low blood pressure (sometimes…these are averages) 75/59

High blood pressure (sometimes…these are averages) 140/110

Reoccurring infections – Here is a list of infections just since

·         August 2011 – Post surgical infection in abdominal cavity (Viral & bacterial suspected) Finally part of my 1 of the types of headaches I get were diagnosed as “Cluster Headaches”

·         September 2011 – Urinary tract infection symptoms began

·         October 2011 – Uti – A round of Cipro to treat

·         November 2011 – Uti STILL now a 2^nd round of Cipro

·         December 2011 – Some relief  (Uti finally gone) but swollen lymph nodes

·         February 2012 – Pharyngitis round of Amoxicillin

·         March 2012 –  Oral Thrush (Yes like babies… from constantly taking anti-biotic and having no immune system to speak of.

·         April 2012 – lymphadenitis has been hanging around since December moving from lymph node to lymph node like the “Mole” in “whack a mole”.

Try to keep in mind that the infections alone are not the only things I was diagnosed with during that time just the infections.

So imagine a day when you wake up you have a back ache from brushing your teeth and hair that make you have to lay down for a few minutes to “recover”.

You are very weak as you try to get up and all of your bodies’ joints hurt especially the ones you need to get up the knees, ankles, wrists, elbows (even hips).

You have headache that hurts so severely that it makes it hard to see.

Your heart is racing but you feel dizzy likely from your very low blood pressure.

You are trying to talk to your spouse but you can’t find the words to express how tired you are, that you still have a urinary tract infection made painfully clear by the feeling that you are peeing acid or that you noticed that you have a new bruise from doing absolutely nothing

You can’t remember or concentrate on what your spouse is saying in return long enough to understand them.

Oh and you have not been able to go to the bathroom (*you know what I mean) for over 10 days.

Now if you can imagine all of that and that’s less than 10 % of the symptoms of Cushing’s

Can you imagine how it feels to live a life fighting this disease?