tag:blogger.com,1999:blog-54380078866330737272024-02-08T05:18:04.500-08:00Fight of My Life (Girl fighting in zebra print)Fighting for your life with Cushing's is a lot like being a pro-fighter.
You do the fighting alone and if you are lucky you have a few good people in your corner.Unknownnoreply@blogger.comBlogger3125tag:blogger.com,1999:blog-5438007886633073727.post-6787158389660104872012-04-25T07:58:00.001-07:002012-04-25T10:55:45.103-07:00It is with you every day in so many ways.<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">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 </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">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. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">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.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">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.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">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. </span></div>
<span style="font-family: Calibri;"><strong>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?</strong></span><br />
<strong>
</strong><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><strong>If I do that am I admitting defeat and am being negative
about the outcome of my health?</strong></span></div>
<strong>
</strong><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><strong>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?</strong></span></div>
<strong>
</strong><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><strong>If I do that am I living in denial and not facing the
reality of my illness?</strong></span></div>
<strong>
</strong><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><strong>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?</strong></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">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. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">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?</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Happy Birthday to me. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Ps. I bet you can figure out my wish.</span></div>
<br />
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<br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5438007886633073727.post-71569986901546583782012-04-07T11:24:00.002-07:002012-04-07T11:38:21.513-07:00<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">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. <b style="mso-bidi-font-weight: normal;">I have had at least 70 symptoms</b>
from Cushing’s (never counted them before today…always told my friends more
than 40…guess I was a little off). <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">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 <b style="mso-bidi-font-weight: normal;">60 remaining symptoms</b> 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. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 115%;"><strong>The
most debilitating symptoms for me are:</strong><span style="font-size: x-small;"> (some are worse somedays this is today's perception)</span> <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Spontaneous bruising</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> (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)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Sore joints</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> -knees/ankles/elbows
(Ouch)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Backache</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> - 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)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Lack of & decreased
energy</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">
(zzzzzz… did you say something...zzzzzzzzzz)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Brain fog (severe) hard
to concentrate, understand remember things</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> (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.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Hard time articulating
thoughts</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">
(sometimes)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Severe constipation</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> (days to weeks without)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Eye pain with compromised
vision<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Low blood pressure</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> (sometimes…these are
averages) 75/59<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">High blood pressure</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> (sometimes…these are
averages) 140/110<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">Reoccurring infections –</span></b><span style="color: black; font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> Here is a list of
infections just since </span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Symbol; font-size: 12pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">August 2011 </span></u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">–
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”<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Symbol; font-size: 12pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">September 2011 </span></u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">–
Urinary tract infection symptoms began<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Symbol; font-size: 12pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">October 2011</span></u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">
– Uti – A round of Cipro to treat<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Symbol; font-size: 12pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">November 2011</span></u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">
– Uti STILL now a 2<sup>nd</sup> round of Cipro<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Symbol; font-size: 12pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">December 2011</span></u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">
– Some relief<span style="mso-spacerun: yes;"> </span>(Uti finally gone) but
swollen lymph nodes<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Symbol; font-size: 12pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">February 2012</span></u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">
– Pharyngitis round of Amoxicillin<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Symbol; font-size: 12pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">March 2012</span></u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">
– <span style="mso-spacerun: yes;"> </span>Oral Thrush (Yes like babies… from
constantly taking anti-biotic and having no immune system to speak of. <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 10pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<span style="font-family: Symbol; font-size: 12pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">April 2012</span></u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">
– lymphadenitis has been hanging around since December moving from lymph node
to lymph node like the “Mole” in “whack a mole”.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Try to keep in mind
that the infections alone are not the only things I was diagnosed with during
that time just the infections. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">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”.<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">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).<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">You
have headache that hurts so severely that it makes it hard to see.<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Your
heart is racing but you feel dizzy likely from your very low blood pressure.<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">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<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">You
can’t remember or concentrate on what your spouse is saying in return long enough
to understand them.<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Oh
and you have not been able to go to the bathroom (*you know what I mean) for
over 10 days.<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Now
if you can imagine all of that and that’s less than 10 % of the symptoms of
Cushing’s<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt 0.25in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Can
you imagine how it feels to live a life fighting this disease? <o:p></o:p></span></b></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5438007886633073727.post-71634167504177401452012-04-05T15:10:00.000-07:002012-04-07T11:38:41.830-07:00<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="color: #444444;">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?</span></span><span style="color: #444444;"><br /></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="color: #444444;">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 <b style="mso-bidi-font-weight: normal;">I HAVE.</b></span></span><br />
<br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="color: #444444;"><b style="mso-bidi-font-weight: normal;">I HAVE CUSHING’S (hypercortisolism)</b></span></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="color: #444444;">So let me tell you about what else I have<b style="mso-bidi-font-weight: normal;">. I have a soul mate</b>. 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.</span></span></div>
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<span style="color: #444444;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">I
have three sons</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">. 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. </span><span style="font-family: Wingdings; font-size: 12pt; line-height: 115%; mso-ascii-font-family: "Times New Roman"; mso-bidi-font-family: "Times New Roman"; mso-char-type: symbol; mso-hansi-font-family: "Times New Roman"; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span></span></div>
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<span style="color: #444444;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">I
have a family made up of blood and non-blood relatives. </span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">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).</span></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="color: #444444;">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.<o:p></o:p></span></span></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="color: #444444;">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.<o:p></o:p></span></span><br />
<span style="color: #444444;"><br /></span><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="color: #444444;">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.<o:p></o:p></span></span></b><br />
<span style="color: #444444;"><br /></span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="color: #444444;">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. <o:p></o:p></span></span><br />
<span style="color: #444444;"><br /></span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="color: #444444;">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.<o:p></o:p></span></span>Unknownnoreply@blogger.com0