So, I am a 26 years old
and right now, I am unable to work due to me having all of the following
conditions, gastroparesis, endometriosis, migraine headaches, right hand only tremors,
extreme fatigue, excessive nausea and congenital adrenal hyperplasia, plus some other things going on the doctors are
not sure of! On 06.23.2011, I was diagnosed with Gastroparesis. This
is a condition in which the muscles in your stomach
do not function normally. My stomach function is 33% at 4 hrs. and
normal results for the 4hr mark is 10%-0%. The way they measure your
"stomach emptying function" is by a test called "gastric
emptying study", which is preformed by nuclear medicine physician.
You get to eat radioactive eggs and stand in front of a scan from time to time.
It is not a fun test/scan to do! Anyways, ordinarily strong muscular contractions propel
food through your digestive tract. But in gastroparesis, the muscles in the
wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. This is interfering with my digestion, causes excessive nausea, and I vomit some of my food (when I
can eat), and it has messed with my blood sugar levels and wreaking havoc on my body from a nutrition stand point; as well as messes with my bowel movements/habits.
YUCK! I know I can't believe I just told the world this...haha...I have lost 53 pounds since 04.15.2010. I am abnormally fatigued for someone of my age, who used to play all kinds of sports, go
out on the town with friends and work 40 plus hours a week! No matter how much
or little I sleep, I am still exhausted. I take naps a lot and sit around the house,
too. I do try to get outside as much as I can to take little short walks, to
keep the body moving because that is KEY! There is also no cure for gastroparesis!
On 04.15.2010, I was diagnosed with Stage 4 Endometriosis. Endometriosis is a very
painful disorder in which tissue that normally lines the inside of
your uterus — the endometrium — grows outside your uterus. Endometriosis most
commonly involves your ovaries, bowel or the tissue lining your pelvis. Stage
4 is the worse stage you can have which means severe
disease, deep endometriosis, dense adhesion and
it was everywhere in my abdomen: colon, bladder, both ovaries,
urethra, uterus, stomach and I had a “Chocolate cyst” that
made my right ovary burst open, and it was almost the same
volume size as my uterus! I have had two abnormal surgeries for endometriosis,
the first was on 04.15.2010 and the second was on 02.04.2011.
I will have to continue to have surgeries that
use a laser to cut out the adhesions, and cysts. I am unable
to take birth control. This is due to how it affects my 17-Hydroxyprogesterone. Birth
control is one way that can help slow down the growth of the endometriosis. I
was in absolute 24/7 pain before the surgeries. The first one
helped a very little, the second took a little while to kick in. I was pain
free, besides when I ovulated and when I was on my cycle. Now, I am back
starting to have pain/pressure even when I am not ovulating or
on my cycle. Plus, when I am ovulating or on my cycle the pain/pressure is
getting more intense again! The pain/pressure is in my abdomen and
lower back. In addition, I have more headaches, migraines, nausea,
and if that’s not all more fatigue!!
On 03.02.1985, I was diagnosed with
classic Congenital Adrenal Hyperplasia (CAH). The only
reason I was diagnosed almost died at 3
weeks of age. C.A.H is a collection of genetic
conditions that limit your adrenal glands' ability to make certain vital
hormones. In most cases of C.A.H, the adrenal glands don't
produce enough cortisol. The production of two other classes of hormones also
may be affected, including mineralocorticoids (for example, aldosterone) and
androgens (for example, testosterone). I have to take corticoid
steroids (Prednisone) and (Fludrocortisone) twice a
day, which affects my body, and if I do not take them I can experience a life-threatening "adrenal crisis," due
to inadequate production of cortisol from the adrenal glands. An adrenal crisis
can result in a seriously low level of sodium in the blood,
diarrhea, vomiting, dehydration, low blood sugar levels and shock. With C.A.H.,
my immune system is compromised so I can get
sick much more easily than the average person. My body has a harder
time handling stress because of the C.A.H. With me having to take the
corticoid steroids, I have to get a bone density scan every two years and my
most recent measurement indicates there has been a statistically
significant loss of bone mineral density equal to 6.4%, which
means compared to my previous bone density study reveals evidence of ongoing
bone loss, suggesting the existence of an ongoing disease process. C.A.H. affects
my life greatly by, having to go to an Endocrinologist every
3-6 months (labs, visit, etc.), have to take corticoid steroids (and the
side-effects that come with them), low immune system (which
means I get sick more often), etc. and it complicates the
treatments of the above stated conditions and illnesses. I have not
meet ANYONE who has this disease! I know there are people out
there who have it and are embarrassed to have it, don't be! God made
you! We ALL have a purpose and a destiny! I would love to hear from you if
you have C.A.H.! There is no cure for Congenital
Adrenal Hyperplasia.
Quick note, it has made
dealing with this a little harder for me since I lost my job in March 2009.
Then I lost my unemployment benefits in March 2011. I now have no
money or insurance, but I am SO extremely thankful for my parents for
letting me live with them! And I have been able to get on a program called Project Access, here in
Durham County where most of my medical costs have been PAID! Plus, I
am getting food stamps which help out a lot for food...it's not like I can eat
to much right now...hehe ;-)
So that's all of the
health craziness in my life! I don't see this as the last of me...I see this a
mere hurdle that life has given me to challenge me to make me stronger! So
whatever you may be facing keep FIGHTING and NEVER EVER GIVE UP!
