Boy Boy was this week a long week. Monday morning, my
mom and I headed up to Rochester, Minnesota on a quest to figure out what to
else to do for my chest (which you can see what's wrong in my last post).
So it took about 8 and 1/2 hours to get there and if you don't know Rochester,
it's a very old town. So when we drove in, I could NOT stop laughing because
there water tower is a giant corn and all the hotels were just very old to say
the least. But it worked and we lived. hahahaha. However, Rochester does have a
diverse and amazing restaurants up there. During our whole trip I got to eat
Indian and Mediterranean food and it was killer.
Anyway, Tuesday morning was my first appointment
with a dermatologist who knew a lot. I felt very informed after that
visit. She confirmed with me that I do have Hiddradenitis Suppurativa because
that disease isn't just something that you can swab and it comes back and says
I have that; the symptoms are what you look at to see that you have it. So she
confirmed I had it and then told me that my sweat glands just always get
infected because of the disease and it could be because of how weak my immune
system is. She compared the disease to acne inside my sweat glands, just a
bigger type of acne. It has a lot of sores and infection and lumps in it that
my body can't get rid of. So then the question came up, "what's are
next step?"
Obviously I always have to watch being around sick
people (I even got a mask!!) and making sure I covering any open cuts with bandages,
but for my chest they had a couple options. A big surgery was not an option
because of the way I heal and laser treatment wasn't either because of how long
it takes and it basically just burns your skin. So they decided to do two
things. One, they want to put me on a birth control because hormones with this
disease is a bad combination because I am still becoming a woman so my hormones
aren't regular which makes me get flare ups all the time. So putting me on
birth control will regulate my hormones. The second thing that they are going
to do, which is kind of the scariest thing for me is put me on a drug
called Acutane. Acutane will completely shut down my sweat gland system
and my oil production so that there is no way I can get really any flare ups or
infection down there. But there becomes side effects with that. All of my skin
will become extremely dry since I can't produce oil. So my face and arms
and lips will constantly be extremely dry so I will have to be special
skin care and chapstick for myself while I am on it. My diet also has to
be pretty good because it raises your cholesterol levels and blood sugar
while you're on it so I don't want to add more to that. They said once I get
off it though, my levels should go back to normal. It also increases
mental health problems so that is kind of scary but I am doing good and
right now I think that I can do anything. I have amazing friends to go to and
if it starts acting up, there are ways to stop it. If anything becomes to
serious, they can take me off it and we can find a different treatment plan I
guess. I will be on these two medicines for a year and while I am on it, I
will have to go and have monthly blood drawn to make sure everything is good
and that I am not pregnet. So that will also kind of be a hassle in
college but I'm not complaining. They helped me and that's what I asked
for. I'm just a little leary of Acutane but I will be okay. I also
can't drink more than a cup a day of alcohol while I'm on it and I'm gonna be
honest, I'm going to college and it could happen but I just can't have more
than a glass if any. So that is kind of scary as well. Then next year in
July I will come back to Mayo and they will check me out and if everything is
ok at that time, I will set up an appointment for that upcoming winter break to
have cosmetic surgery on my scar which would be awesome!!
Tuesday afternoon, I got to go up to Cannon
Falls, Minnesota which was about 45 minutes away and I got to see my Aunt
Kristi that I was very happy to see because I hadn't seen her in a while. It
was awesome to see her and we went to a gorgeous little town and had a really
good dinner. Wednesday morning, I got to go to educational classes in the
morning that can help me while I go through the medicine and the treatment. I
went to an eating healthy class which was pretty cool and I learned that I
know I am going to college and they don't really have the best food to choose
from but if half my plate is healthy, then I am doing good. The other class I
went to was how to handle stress. Stress has a hugeeee part in my disease and I
am almost always stressed so it was cool to see other ways I can handle it and
the lady was awesome.
Wednesday
afternoon, I had my last appointment which was with a surgeon and I didn't
really think that he would do anything but when we got in there, he talked a
little more about my medicine and some details with the cosmetic surgery but he
also found a spot at the lower end of my chest that was full of infection. So
they sat me on a table and and I looked away and they numbed me all up and
cut out a portion of my chest. It was kind of gross cause I could hear
the tools and the snipping and stuff but they got it out and drained all
the fluid out of my chest and I was good to go within an hour. They didn't
stitch it up because they wanted the rest to drain and heal from the inside
out. So I have bandages covering my chest right now and it's pretty painful but
it will get better (: I was just so happy when they numbed me up because that's
really the only time I don't feel pain in that area!! So they let me go and I
was free to leave. Then me and my mom decided to get some driving out of the
way that night so we drove 3 hours to Madison, Wisconsin and stayed there which
is always a fun place to stay! We ate at another awesome restaurant called
the Old Fashioned. I definatley recommend it if you're ever in
Madison! I just got back home today at around 5:30 and I am exhausted and am
going to take some IbProfen to help with the pain! Thank you for anyone
who has stayed by my side during this whole journey! You guys rock!!!
"Let's marvin gaye and get it on,
You got that healing that I want,
Just like they say it in the song,
Until the dawn, let's marvin gaye and get
it on.
"Marvin Gaye" by Charlie Puth and
Meghan Trainor
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