Wednesday, April 25, 2012

It is with you every day in so many ways.

I have not been keeping up with the blog. Not because it isn’t important or I don’t think about it but because like so many others I just don’t have enough time, energy or “spoons” to get through most days. Bringing me to today
On this day I turn 36 years old and yesterday I had to renew my driver’s license. The lady hands it to me and despite the optimism I feel (most days) when she said you will need to renew again in 2020 I heard myself say (to myself) if I am still here. I hate that being sick makes that a part of every day.
I have been a college student online for a couple of years now and even on my own time with this illness it has been a CHALLENGE to say the least. Of course I have only recently been diagnosed with Cushing’s before that it was a lot of other things the doctors “thought” it was. The symptoms no matter what it is called are wide spread throughout the body and it often feels like how I will feel moment to moment is about as certain as a roulette wheel. The same is true for the question of if I will be able to regain my health. That leaves me constantly wondering how to live my life.
A few years ago I got married, had great kids, enrolled in college for a 4 year degree and was drafting my business plan with my husband for after graduation. Those dreams though have felt increasing more like water and the more I try to hold on to them the more they seem to slip through my fingers. Stress is not a friend of mine since the illness has set in…like most people when I faced a deadline in the past it meant that I pushed through and got it done. Having this illness means that my body is always in that state already so when I need to go “into this state” my body shuts down and I am unable to function properly...if I was even functioning to begin with.
I have tried to explain to my friends and family that being ill not only makes me feel awful all the time but it leaves me feeling lost without direction. It has taken the certainty and determined self guidance away from me that I have always had. I no longer know what to do or what to be planning for or how I should be living.
Should I live like this is my last years on earth and try to spend time with family and friends and get through the bucket list?

If I do that am I admitting defeat and am being negative about the outcome of my health?

Should I continue with my business plan, college and networking as strong as I can even if it makes me feel awful when I do have free time?

If I do that am I living in denial and not facing the reality of my illness?

Does that mean I may be wasting the time I have on trying to get somewhere I will never reach and sacrificing other dreams and time with my family for no reason?

I am so confused about what is the right thing to do and I know that the right thing is what is right for me but WHAT IS THAT? I know that every time I turn an assignment into school I wonder if I will ever be able to use the degree I am working to acquire. I know that If Stephen Hawking can live his life the way he does... I can think I can run a business. Right? My field is not like his and I won’t be changing the world so I don’t think a bank is going to support a business loan and a plan around a sick person who has a great idea she may never be able to carry out. So does that leave me getting a job in my field not without a treatment and remission I can barely pass courses online (in my own time) there is no way I could meet the demands of a job (any job right now) in my field especially.
I know that I try not to pass up the good things I could do with my kids, do the best I can to go on like things are still “normal” and my future is still on the course I have set. I just can’t help the fact that the questions are ever present... if I am heading in the right direction or if I am living in denial or reality…if I am living with optimism or pessimism and where to draw the line with both. How do I find a balance between being sick and still living? Is there a balance that will still allow progress in both my personal and professional life on this road back to healthy? Will I ever be healthy again?

Happy Birthday to me.

Ps. I bet you can figure out my wish.

Saturday, April 7, 2012

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 2nd 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?

Thursday, April 5, 2012

In an effort to raise awareness about our illnesses it was hard to know where to start. It is personal. It is uncomfortable. It is misunderstood. It is however also important so this is what I came up with, an answer to the question what will happen if I am not cured?

So when trying to figure out where to start this blog about the fight of my life writing about what will happen if I am not cured seems like the best choice. It is a question that I can answer quickly off the top of my head even when my concentration isn’t so good. It is also a question that when analyzed results in some gruesome details of misery, disfigurement and it isn’t very different in many ways from other serious degenerative diseases that lead to death when not “cured” except that this is the one I HAVE.

I HAVE CUSHING’S (hypercortisolism)
So let me tell you about what else I have. I have a soul mate. I have husband that I am completely in love with. A man, whom I cannot get enough of in so many ways. He loves me passionately in return. My husband has talked about us growing old together since we started dating. He is interesting and well rounded, active, musical, philosophical and tries so hard to make me happy…no matter what.
I have three sons. The smallest is still a toddler. He has spent every day of his entire life with me except for the time I have spent in hospitals since his birth for various procedures and surgeries. He loves to go outside, read stories (he can read already I am proud to say) and loves cars like no other little boy I have seen. I have a tween that I share with my ex-husband who is moral, bright, outgoing, honest and fun loving and just beginning to dream of what he wants to do with the rest of his life. I have a step-son that plays baseball, has interest in drawing and while he isn’t with us all of the time is missed and thought about every day. We speak to him several times a week by phone and follow him on facebook. J
I have a family made up of blood and non-blood relatives. People that I would not trade for anything (even if they don’t understand what is going on with me…most of them try…most of the time). Friends that say hello for no reason and family members who are not blood relation who happen to live miles away and still feel as close as the next room. Those that would change their lives to be a part of mine just to be near us (that is family isn’t it).
So what will happen if I’m not cured? All of those whom love me, and I love in return will get to watch me if I am lucky slowly die. If I am unlucky...pass in the next few years or months perhaps. Who can say? Not the doctors at this time. As a mother I think of my poor youngest who if I pass away in the near future will have no memory of me at all. No mother wants that. To create a child out of love with a man you are madly in love with and then not be able to raise him, let alone have him remember you or know anything about you first hand.
Then again if he remembers me and I am never cured he will only remember me being sick and unable to be a real part of his life. A mother should be able to participate; I don’t think any child would say they don’t want that. No matter how much I love him, if it is from the sidelines it is not the same as being a part of the day to day. It makes me feel guilty (even though I had no way of knowing or preventing this illness, Cushing’s isn’t like smoking). I feel guilty because I want him to know and remember me even if I am sick. My tween aged son already feels “robbed” because I am not the mother I once was and he misses me even though I am still here. The effects of Cushing’s and how it prevents you from doing “normal” things “everyday” things leaves you feeling like a prisoner.

I so very often trapped in this body. So to answer the question of "what will happen if I’m not cured"? I will likely die, my family and friends will have to watch and the hearts of no one will be spared. I know this is hard to hear and seems all worst case scenarios but it’s true. The death of a fellow member of my support group just last month (Bless them) is proof of just that.

Cushing’s syndrome and/or Cushing’s disease may be rarely diagnosed but it is (in my opinion) more common than it is realized. The effects of hypercortisolism on the body are that it destroys all of the bodies systems (cardiovascular, nervous, gastrointestinal…all of them). It is painful, debilitating, misunderstood, often disregarded due to its complexity and a lack of knowledge about its existence let alone what it means. This post today isn’t about what Cushing’s has done to me or is doing to me along the way (that cannot be covered in one day) but about what having Cushing’s will do to me (the final result) if I am not cured.

One more thing…can you please help us raise awareness of this disease. Many people I know are shocked when I tell them what is going on with me...that I have been diagnosed with this terrible rare disease. I understand it is not the type of thing you hear every day and it’s kind of unbelievable (but let me tell you one day in my body and you would get it, hell one hour on a bad day would have you begging for mercy) but it is real. I also understand that you don’t know what to say or what to ask but not saying anything or turning away from us is not the right thing. Fastest way to clear a room isn’t to yell fire it’s to say I have Cushing’s (or a brain tumor) within 3 seconds all you hear is crickets. Those of you who stick around don’t feel sorry for us just be our friends, family and neighbors we need you. If we (all of us/everyone) can’t make this as easy to talk about as say “chicken pox” then we can’t raise awareness. We are the few who have it...and you as the many without it must understand that we need your help in the fight of our lives.