Sunday, August 21, 2011

“The determination of the mind to win will always overpower the will of the body to quit.” - Awareness Week Blog by Courtney Powell

Wow, am I exhausted! My family just got home from a weekend
camping trip in PA. I haven’t gone camping since I was really young and
normally my family wouldn’t pick something like camping to do because of all
the supplies we have to bring along for me. It’s just hard to travel anywhere
when you’re on TPN. It was for my moms DMAT team though and I know she was
excited about the family camping trip and seeing all her friends and their
families, so I really wanted her to have a good time and just enjoy the weekend
without having to stress about me and my medical issues. She doesn’t get to do
a lot of things that are just for her because she spends most of her time
scheduling my doctors appointments, taking me to the doctor’s appointments,
dealing with surgeries and meds and just mini crisis’s like having an infected
port currently.

Yeah, that’s right. My port is infected. It’s awful. It
oozes pus and is so incredibly painful. I am keeping ice packs on it which does
help but lifting my arm or using my right arm for any reason intensifies the
pain in the port. Did I mention that I am right handed?? Yeah, that makes it a
tad bit harder. I went to see my surgeon on Monday and he said that for now the
port has to stay in unless I get a fever of 101 or higher even though it is
infected. I don’t tolerate feeds through my mic-key J button currently so if we
take out my port I have no way to get nutrition. My port is my life line and we
are stick in a lose lose situation. So, for now I am getting antibiotics
through my infected port to hopefully prevent the infection from getting any
worse. I can’t handle it getting any worse that’s for sure. My nephew’s baptism
is on Sunday and then I leave to go back to college afterwards. This kind of
stuff only happens at the most inconvenient times though, boy have learned that
already. My sister would hate me if I missed her son’s baptism though. I was
admitted when she hosted a party to announce her pregnancy and I was in the ER
the day of her baby shower. She was real emotional and mad one night telling me
I have already missed everything about the baby’s life so far. It made me feel
horrible because what she doesn’t realize is that I cried too when I was
admitted and the rest of my family was at the party and I found out she was
pregnant last via a phone call. It makes me upset too to miss out on life. I
would do anything to be able to attend everything, but sometimes it just not my
fault and she doesn’t really understand that. We can’t expect everyone to understand
life with GP but I just hope she realizes I love her and my nephew and do my
best to be there for them when I can.

Anyway, back to telling you about the camping trip. I don’t
think camping was as much fun for me as it was for my sister and mom. My little
sister brought two of her friends with and they had a blast swimming in the
pool, canoeing, going down a big blow up slide, taking walks, roasting
marshmallows, etc. You know all the normal camping activities. My moms work
friends were all there so she sat around and chatted a lot. It’s not that I
mind or anything, I’m not a little kid, I can occupy myself. It’s just that I
kind of felt out of place or in the way most of the weekend. We rented a cabin
that had a mini kitchen and a bathroom because my TPN and antibiotics have to
stay refrigerated and a bathroom is kind of a necessity with Gastroparesis. I
wasn’t able to go in the water at all because my G-tube was placed a week ago
and they say 4 weeks before you can submerge yourself in water. Plus, my port
is accessed and we didn’t want to deal with taking it out because of the
infection making it hurt exponentially when being accessed and de-accessed. I
had to sit inside for an hour each day while my antibiotics ran (if you ever
need a traveling IV pole hangers work great! Just put the bag on the hanger and
hang the hanger from the curtain rod or a cabinet) and I had to carry around my
backpack for my TPN and fluids the rest of the day. I felt like having GP
really held me back this weekend and I had to watch everyone else have fun
doing things I couldn’t participate in. At one point I wanted to go canoeing
with my sister and figured if I de-accessed it would be fine because it’s not
likely that I would really get wet canoeing. Last minute my sister decided she
didn’t want to go even though my mom had already de-accessed me. That was kind
of a let down and frustrating because then we had to re-access my port and boy
does that hurt right now. The good thing about having my moms DMAT team there
was that there were doctors and ER nurses. So, my mom’s friend who is a nurse
practitioner accessed my nasty infected port for us (took 3x to get blood
return) and then gave me a lecture on how the doctor needs to take it out this
week. Duh. I want it out too but he isn’t convinced yet. I couldn’t even do the
simplest camping activity of eating a toasted marshmallow. Well, I mean I
actually did eat one but then I ended up throwing up way more then just the
marshmallow. Thankfully I made it to the bathroom and didn’t do it in front of
my sisters friends (she would have been mortified) but then my sister had to
pee and I was in the bathroom for a long time so she was getting annoyed with
me. I felt like I was trying to be polite by using the bathroom instead of a
barf bucket, and I still get snapped at by her! 15 year olds, what can I say.
I’m just glad I’m not 15 anymore!

You know how kids wrap their retainers in napkins and then
the napkins accidently get thrown out leaving them to have to garbage pick for
them? Well, we had a similar experience last night or I guess early this
morning. Only, it wasn’t my retainers that got thrown out. I went to take my
meds around 1am and I couldn’t find my extender for my J tube. I knew it was in
a zip blog baggie and in the med bag on the counter last time I used it. I
searched everywhere in that small cabin kitchen and living room with no luck.
So I finally had to wake my step dad up because he was the one who crushed my
meds for me before going to bed so I assumed he moved it. Well, he didn’t (so
he says at least ;-) men never own up to losing things). So we both keep
searching and my mom heard us rummaging around and woke up and helped us. We
looked in every nook and cranny and finally all that was left to possibly look
in was the two garbage bags. So my parents garbage picked for my extender and
what do you know? The zip block baggie with it in it had gotten tossed out.
How? That’s still a mystery. At least we found it, but it’s this kind of stuff
that makes me feel in the way. If I didn’t have GP I wouldn’t have to take all
the meds I do, then I wouldn’t need my extender and they wouldn’t have had to
garbage pick at 1am. I am so thankful
they do this stuff for me though. I would never be able to get through this
hard journey with out all the love, help, and support my mom and step dad give

We have gone through so much the past 5 years. We thought life couldn’t
possibly get any harder then me having Dysautonomia (POTS) and then suddenly
God switches things up a little bit and had my POTS cause GP last summer. It’s
been a struggle not only for me but for my family. They say that when a family
member gets sick the whole family does too and I think it’s a very true
statement. POTS and GP have not only changed my life but my family’s lives as
well. So many things revolve around me; where we can go for vacation, the
temperature of the house, the length of shopping trips, etc. It makes me feel
like a burden but I know my family loves me and would do anything to see me get
healthy again. For now though as I wait for that miracle just having them to
love me and support me makes it all better because what would life be without a
family to pick you up when you’re down, or to hold your hair well you puke??

I want to leave you all with a quote I always remember when
feeling discouraged.
“The determination of the mind to win will always overpower
the will of the body to quit.”

Keep fighting!!!

1 comment:

  1. Have they ever checked you for SMA Syndrome? Just a question since you have so many symptoms for it. They are checking me now and have new tests to run. It is very rare, but if you are very thin and have the symptoms, you might want to check out the fb site for SMA awareness and support group and check our=t Samantha Mina's videos on youtube.

    Good luck with your future and God Bless you, Rene Forbes