tag:blogger.com,1999:blog-89637295394103885562024-03-12T23:35:42.461-05:00Learning To LiveDancing through life after lung transplant, despite cystic fibrosis, PTSD and all that other stuffCarlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.comBlogger730125tag:blogger.com,1999:blog-8963729539410388556.post-45627657938416265092021-01-14T18:56:00.000-06:002021-01-14T18:56:23.675-06:00Abuse<p> Abuse.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">This is going to be long, but it’s
important.<span style="mso-spacerun: yes;"> </span>If you only read the beginning,
I want you to know:<span style="mso-spacerun: yes;"> </span>If you are a
survivor of abuse, or going through an abusive situation, you are not the
abuse.<span style="mso-spacerun: yes;"> </span>You don’t have to let it define
you, and while it’s hard to move on, you can.<span style="mso-spacerun: yes;">
</span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">I want to end the stigma for abuse
victims – which is why I’m writing this.<span style="mso-spacerun: yes;">
</span>I want there to be stigma for the abusers, not the abused.<span style="mso-spacerun: yes;"> </span>I need to practice saying, “My mother is abusive.”<o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">I don’t know why it still hurts so
much so long after it happened.<span style="mso-spacerun: yes;"> </span>I know
she still hates me.<span style="mso-spacerun: yes;"> </span>My dad has to be
careful mentioning me to my mom or she’ll flip out.<span style="mso-spacerun: yes;"> </span>Why does it bother me so much that someone who
could be so awful to me doesn’t like me?<span style="mso-spacerun: yes;">
</span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>A few days
ago – January 10<sup>th</sup>, a memory popped up of a note I had typed in
2008.<span style="mso-spacerun: yes;"> </span>The gist is, I was sick.<span style="mso-spacerun: yes;"> </span>My mom was staying with me and I was doing
home IVs.<span style="mso-spacerun: yes;"> </span>Keep in mind I was 21 when
this happened.<span style="mso-spacerun: yes;"> </span>I packed and took my 9pm
IV dose with me so I could stay out with my friends longer.<span style="mso-spacerun: yes;"> </span>And by “out with my friends,” I mean we were
at someone’s house watching movies – the same thing I would do at home while my
IV infused, just with people.<span style="mso-spacerun: yes;"> </span>My mom watched
me pack up my meds, but at 9:20 my phone rang. I answered and she was screaming
I was late to do my 9pm IV dose.<span style="mso-spacerun: yes;"> </span>I
reminded her I had it with me and it was infusing.<span style="mso-spacerun: yes;"> </span>She changed to screaming I would wake her up
when I came home at “all hours of the night.”<span style="mso-spacerun: yes;">
</span>I was home by 10:30. I promised not to wake her when I got home.<span style="mso-spacerun: yes;"> </span>I didn’t wake her, and did my treatments in
my bedroom so she wouldn’t wake up.<span style="mso-spacerun: yes;"> </span>I
was writing in my journal, when at 11:40 my phone rang again.<span style="mso-spacerun: yes;"> </span>I answered, really puzzled.<span style="mso-spacerun: yes;"> </span>This time she was screaming that I didn’t
wake her when I got home, so she had no idea if I was home or not.<span style="mso-spacerun: yes;"> </span>I reminded her that she’d asked me not to wake
her, but it didn’t matter.<span style="mso-spacerun: yes;"> </span>She devolved
into her “When will you grow up?/Why are you so irresponsible?”.<span style="mso-spacerun: yes;"> </span>I just agreed with her, like I always did, but
had to keep from laughing because I could hear her yelling from the room next door,
and then heard an echo through the phone. <span style="mso-spacerun: yes;"> </span>I hung up and I cried myself to sleep.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>Before the “final
disowning,” I always tried to live my life to make my mom happy, not for me.<span style="mso-spacerun: yes;"> </span>I didn’t want to make her mad, so I often did
what she wanted, not what I wanted.<span style="mso-spacerun: yes;"> </span>This
happened because any time I did what I wanted, she would disown me.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>Once, I
kept a big secret – that Dan and I had decided to build a house – because I knew
she would be furious.<span style="mso-spacerun: yes;"> </span>She had told us we
shouldn’t.<span style="mso-spacerun: yes;"> </span>I hid our decision from her
because it was important to me that she attend out vow renewal and wedding reception.<span style="mso-spacerun: yes;"> </span>And damnit! She has fun that night.<span style="mso-spacerun: yes;"> </span>I’d never seen her and my dad so happy or
having so much fun.<span style="mso-spacerun: yes;"> </span>Never.<span style="mso-spacerun: yes;"> </span>And then when she found out, she disowned
me.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>When she
found out Dad and I were planning a trip to Hawaii for February 2019, she
flipped out.<span style="mso-spacerun: yes;"> </span>I wasn’t necessarily
keeping the secret because she wasn’t speaking to me.<span style="mso-spacerun: yes;"> </span>But she found out our plans, and then called me
to tell me she wished I were dead.<span style="mso-spacerun: yes;"> </span>She
said she wished she had never helped me get through transplant.<span style="mso-spacerun: yes;"> </span>This was in June 2018, a few days after
George and I started dating – and he didn’t run!<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>Fast forward
to Christmas 2018, George and I are on our way to central Illinois to spend the
holiday with his family.<span style="mso-spacerun: yes;"> </span>Mom found out
Dad and I were still planning to go to Hawai’i in a few months, she again
called me and told me she wished I were dead. <span style="mso-spacerun: yes;"> </span>Dad and I still went to Hawai’i.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>In May of
2019, I tried one last time to reconnect with my mother.<span style="mso-spacerun: yes;"> </span>We talked on the phone a few times, but one
day, for no reason, she laid into me.<span style="mso-spacerun: yes;"> </span>She
told me it was rude for me to go to Hawai’i with Dad and the Swensons.<span style="mso-spacerun: yes;"> </span>She said I ruined their family vacation, and
they didn’t want me there.<span style="mso-spacerun: yes;"> </span>She told me I’m
bipolar, or at the very least, have borderline personality disorder, and I was
sobbing.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>When my mom
tells me horrible things, I freeze.<span style="mso-spacerun: yes;"> </span>I
always have.<span style="mso-spacerun: yes;"> </span>I usually just agree with
her to end the conversation faster, because it’s never helped to stand up for
myself.<span style="mso-spacerun: yes;"> </span>This time, Dad was in my living
room, and could hear what she was saying.<span style="mso-spacerun: yes;">
</span>He told me to end the conversation, and reminded me that he, the psychiatrist,
doesn’t think I’m bipolar or have BPD.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>Now I’m
wondering why it was her business if I was rude and invited myself along?<span style="mso-spacerun: yes;"> </span>How does it hurt her?<span style="mso-spacerun: yes;"> </span>I didn’t invite myself along, but
whatever.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>She’s always
tried to hurt me by insulting my friends – ever since I was in elementary
school.<span style="mso-spacerun: yes;"> </span>My two best friends – Sarah and
Katie – were rarely my best friends at the same time because my mom was always
telling me they were a bad influence.<span style="mso-spacerun: yes;"> </span>If
I was hanging out more with Sarah, she’d say horrible things about her and her
family so I wouldn’t spend as much time with her.<span style="mso-spacerun: yes;"> </span>So I’d swing over to hanging out with Katie,
and she’d say horrible things about her.<span style="mso-spacerun: yes;">
</span>She would even go as far as to say things like, “Why don’t you hang out
with Sarah anymore?<span style="mso-spacerun: yes;"> </span>She’s a much better
influence and her family is nicer.”<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>I didn’t like
inviting my friends over – but it happened sometimes.<span style="mso-spacerun: yes;"> </span>Katie was the first person to ever tell me
that I was being abused.<span style="mso-spacerun: yes;"> </span>We were in the
second grade, and I remember sitting on the old blue-green couch in their basement.<span style="mso-spacerun: yes;"> </span>I was sobbing because of something my mom had
done, and Katie looked me square in the eye and told me that she was
abusive.<span style="mso-spacerun: yes;"> </span>We were eight.<span style="mso-spacerun: yes;"> </span>She made me promise that if I ever had kids
when I grew up, that I would be nicer to them than my mom was to me.<span style="mso-spacerun: yes;"> </span>And I never forgot it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>My mom continued
to gaslight me to influence my friendships into adulthood – and my marriage –
but I tried to ignore her and love the people I loved.<span style="mso-spacerun: yes;"> </span>I think that bothered her more.<span style="mso-spacerun: yes;"> </span>She always told me how horrible the Swensons
were.<span style="mso-spacerun: yes;"> </span>“They’re bad parents,” or “They
don’t really like you,” are some of her greatest hits.<span style="mso-spacerun: yes;"> </span>Anyone I care about, she needs to pick them
apart to hurt me.<span style="mso-spacerun: yes;"> </span>My theory is, for some
reason, it hurts her to see me have other relationships.<span style="mso-spacerun: yes;"> </span>She seems hurt if I care about anyone but her,
or maybe it’s that I’m more well-liked than she is.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>This has
all been bothering me again – even more since I found and remembered the IV med
and phone calls incident.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>I just don’t
know why it bothers me so much that she hurt me so much.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>I’ve always
justified her behavior – she was abused as a child, she suffered great tragedy
with the death of my sister and my illness, etc.<span style="mso-spacerun: yes;"> </span>But I don’t think any of that is an excuse to
be a shitty human being.<span style="mso-spacerun: yes;"> </span>Somewhere in
there, I think she cares for me, but I don’t know.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>If she
cared for me, why did she destroy everything I made for her in elementary school?<span style="mso-spacerun: yes;"> </span>All the clay projects – she has my brother’s
on display, but mine are nowhere.<span style="mso-spacerun: yes;"> </span>I once
confronted her, and she said it was Dad’s fault because he failed to rescue my stuff
from the basement before she threw it out.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>My brother’s senior photos still
hang in the living room, but mine are long gone – I assume trashed, as well.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>Just the
other week I got a phone call from my dad, asking me if I had all our home
video DVDs that Darin and I had made for them for their 25<sup>th</sup> Anniversary.<span style="mso-spacerun: yes;"> </span>I said I didn’t, and I told him where they
were the last time I was at their house (Easter of 2018).<span style="mso-spacerun: yes;"> </span>Later that day, I talked to Dad, and they
were exactly where I said they were, she just couldn’t see them because they were
pushed to the back.<span style="mso-spacerun: yes;"> </span>Why would she be so
upset about home movies – a giant gift from my brother and me, if she didn’t
care a little?<span style="mso-spacerun: yes;"> </span>Was she looking for
something to scream about?<span style="mso-spacerun: yes;">
</span>Probably.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span><o:p></o:p></p>
<p class="MsoNormal"><span style="mso-tab-count: 1;"> </span>Last fall,
I fixed her sewing machine.<span style="mso-spacerun: yes;"> </span>Dad brought it
to me, and I had some energy one day, so I took a look at it.<span style="mso-spacerun: yes;"> </span>It was a really easy fix – her bobbin was
tangled.<span style="mso-spacerun: yes;"> </span>So I did basic maintenance on
her machine and sent it back with Dad.<span style="mso-spacerun: yes;">
</span>She also requested that I wind a few bobbins for her because she doesn’t
know how.<span style="mso-spacerun: yes;"> </span>I chuckled because she taught
me how, but whatever.<span style="mso-spacerun: yes;"> </span>I used Amazon to
ship her some pre-wound bobbins, rather than wind them myself, and Dad said she
was thrilled with the maintenance and the bobbins, but I never heard it from
her.<span style="mso-spacerun: yes;"> </span>Things like that confuse the hell
out of me.<span style="mso-spacerun: yes;"> </span>Is she just using my strengths?<span style="mso-spacerun: yes;"> </span>Is dealing with me and my daily medical dramas
too painful, so she’s found excuses to disown me?<span style="mso-spacerun: yes;"> </span>Maybe.<span style="mso-spacerun: yes;">
</span>Is she just friggin’ nuts?<span style="mso-spacerun: yes;"> </span>Yeah.<o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">Anyways.<span style="mso-spacerun: yes;"> </span>I’m trying to be open and say the words, “My
mother is abusive.”<span style="mso-spacerun: yes;"> </span>Because I can’t
dance around it.<span style="mso-spacerun: yes;"> </span>No matter of pain or suffering
in your life allows you a free pass to be a jerk.<span style="mso-spacerun: yes;"> </span>I don’t know why my brother escaped a lot of
this – but that’s a whole other topic.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal">My mother is abusive, and every day I choose to be better.<span style="mso-spacerun: yes;"> </span>From her, I learned I want to be kind.<span style="mso-spacerun: yes;"> </span>I want people to like me.<span style="mso-spacerun: yes;"> </span>I want to feel the love of friendship.<span style="mso-spacerun: yes;"> </span>And I do owe her a lot.<span style="mso-spacerun: yes;"> </span>I will stop short of saying I owe her my life
– because while she was instrumental in saving it several times, I like to
think I am strong enough I would have done it on my own.<span style="mso-spacerun: yes;"> </span>I like to think that she hasn’t held my life
in her hands and she never will again.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-43342671140409547492020-10-04T08:38:00.001-05:002020-10-04T08:38:44.420-05:00Social Media Break<p class="MsoNormal" style="text-indent: .5in;">Today, on Facebook I posted, "I want to delete my social media apps for the entire month of October, or until I'm feeling better, but I know I'll never be able to do it. I rely on photos of friends' kiddos and food and sewing projects to keep my spirits up, and I worry about my CF and Transplant friends, and I want to stay in touch with everyone. I want to encourage my friends who are also going through tough things and just be there to support anyone who needs a supportive ear. So I won't delete my social media, but I won't be monitoring it as closely. I'll be limiting my time spent scrolling, and I'll avoid all the political articles. Go to my blog for the longer explanation of how I'm doing." </p><p class="MsoNormal" style="text-indent: .5in;">Yesterday was “Mean Girls” Day, October 3<sup>rd</sup>,
and George suggested we watch it.<span style="mso-spacerun: yes;"> </span>I know
he wanted to cheer me up and help, but I got sucked into the internet – again –
and ended up binging on articles about PTSD.<span style="mso-spacerun: yes;">
</span>I read about PTSD and chronic illness, PTSD and divorce, PTSD and
politics, and PTSD and triggering television. <o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">My PTSD is complex.<span style="mso-spacerun: yes;"> </span>I say that because it is both complicated AND
from multiple traumas over many years.<span style="mso-spacerun: yes;"> </span>Death,
stalkers, assault, family drama, chronic illness, etc.<span style="mso-spacerun: yes;"> </span>Believe it or not, my double lung transplant was
one of the LEAST traumatic things I’ve been through, at least in terms of how I
handled it mentally.<span style="mso-spacerun: yes;"> </span>There were parts
that were scary – especially the hallucinations and complications, but I’ve had
few long-lasting mental affects from the transplant itself.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">The article I read on PTSD and
triggering television was incredibly interesting and poignant, and then I promptly
lost it into the void of the internet so I can’t link it.<span style="mso-spacerun: yes;"> </span>To summarize, many people continue to watch
TV that reminds them of their trauma.<span style="mso-spacerun: yes;"> </span>I
knew this is true for me, but I didn’t know why, exactly.<span style="mso-spacerun: yes;"> </span>One of my favorite shows used to be “Law and
Order: SVU.”<span style="mso-spacerun: yes;"> </span>The show premiered in 1999,
and until two seasons ago, I watched every episode and watched reruns
fanatically.<span style="mso-spacerun: yes;"> </span>USA Network was my best
friend.<span style="mso-spacerun: yes;"> </span>In the hospital I just kept the marathons
on.<span style="mso-spacerun: yes;"> </span>It didn’t matter how many times I’d
seen an episode, I couldn’t get enough.<span style="mso-spacerun: yes;">
</span>Then, two years ago, I suddenly stopped watching, not really able to
handle it, but maybe I just didn’t need it anymore.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">I’ve connected some dots about my
SVU habits.<span style="mso-spacerun: yes;"> </span>One of my major traumas
began in 1999.<span style="mso-spacerun: yes;"> </span>I had a stalker for about
6 years.<span style="mso-spacerun: yes;"> </span>While he lost his job, I doubt it
was directly because of me; there were others involved.<span style="mso-spacerun: yes;"> </span>He never served any time.<span style="mso-spacerun: yes;"> </span>I never got justice.<span style="mso-spacerun: yes;"> </span>I was told by police no crime was committed
against me because “being creepy isn’t a crime.”<span style="mso-spacerun: yes;"> </span>In 1999, I turned 13.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">On TV, being “creepy” is absolutely
a crime.<span style="mso-spacerun: yes;"> </span>And you get caught.<span style="mso-spacerun: yes;"> </span>The police love their “special victims,” –
the sex crimes victims, and the perps always go to jail or prison.<span style="mso-spacerun: yes;"> </span>Justice is served in under an hour on
television.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">I found all that soothing.<span style="mso-spacerun: yes;"> </span>I found bad guys getting caught and cops
caring so soothing, I mostly used SVU as a way to help me fall asleep.<span style="mso-spacerun: yes;"> </span>I always said it was because I could fall
asleep because I’d seen them all, so I wasn’t afraid of missing anything, but
it was much more than that.<span style="mso-spacerun: yes;"> </span>I was using
SVU to calm my anxieties.<span style="mso-spacerun: yes;"> </span>I knew the bad
guy would be caught, the victim was believed, justice was served and all was
right with the world.<span style="mso-spacerun: yes;"> </span>The facts in the
Television World helped calm my anxieties about the Real World.<o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">Another show I’ve always adored
from when I was very young is ER.<span style="mso-spacerun: yes;"> </span>I own
all 15 seasons and have watched them multiple times through – like, 6 or 7
times, plus all the reruns on TNT I watched when I was in college.<span style="mso-spacerun: yes;"> </span>I’ve always had medical traumas.<span style="mso-spacerun: yes;"> </span>Just living with a chronic illness can be
trauma enough to cause PTSD.<span style="mso-spacerun: yes;"> </span>That is the
other article I read that I wanted to post, but promptly lost.<span style="mso-spacerun: yes;"> </span>I first really got into ER after a botched
appendectomy when I was 18, and after the recent nightmare hospital stay in
July, I found myself craving to watch ER again.<span style="mso-spacerun: yes;">
</span>Now I realize why.<span style="mso-spacerun: yes;"> </span>The doctors and
nurses care so much.<span style="mso-spacerun: yes;"> </span>They always go
above and beyond for every patient.<span style="mso-spacerun: yes;"> </span>It’s
not that my doctors and nurses don’t go above and beyond – my favorite example
is when Cloe brought me a little Christmas Tree after transplant, or basically
everything my friend Erin ever did for her patients.<span style="mso-spacerun: yes;"> </span>I’ve even had doctors go above and beyond,
and when I almost died, I saw the honest pain and fear in Dr. Dolan’s
face.<span style="mso-spacerun: yes;"> </span>But on TV, it’s EVERY patient that
ALWAYS gets the best care.<span style="mso-spacerun: yes;"> </span>Again, the
patient’s word is taken at face-value and they always believe their patients
without blame.<span style="mso-spacerun: yes;"> </span>And doctors in real life can’t
always solve what’s wrong with me or solve it quickly like on TV.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">So I guess I probably need to talk
to my therapist.<span style="mso-spacerun: yes;"> </span>But he’s new-to-me.<span style="mso-spacerun: yes;"> </span>In March, the last time I met with him, I was
mentally doing well, but physically a mess.<span style="mso-spacerun: yes;">
</span>I was about to explain past traumas including my mother and other
familial trauma, but Covid hit and I never rescheduled after an ER visit that
caused me to cancel.<span style="mso-spacerun: yes;"> </span>Now I regret that
because there’s just so much more trauma that’s happened since March.<o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">I mean, July.<span style="mso-spacerun: yes;"> </span>I could write an entire book about that July
hospital stay alone.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">My mind still spins when I think
about the gastric emptying study.<span style="mso-spacerun: yes;"> </span>The panic
attack I had was so bad my legs stopped working.<span style="mso-spacerun: yes;"> </span>I collapsed to the floor and couldn’t feel
them for several hours.<span style="mso-spacerun: yes;"> </span>Of course, I was
accused of faking and of being crazy, which made it worse. <span style="mso-spacerun: yes;"> </span>After I got back to the floor, one of my
nurses recognized my panic and got the doctor to prescribe a lorazepam, and
suddenly my legs worked again.<span style="mso-spacerun: yes;"> </span>How am I supposed
to process that?<span style="mso-spacerun: yes;"> </span>I guess my therapist is
supposed to help me, rather than the medical mystery-solving sleuths on
ER.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">I guess I have a very important
phone call to make on Monday.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">Yesterday, I also read an article
about PTSD and political trauma.<span style="mso-spacerun: yes;"> </span>For me,
there are times I literally can’t watch the news or political coverage without
having a panic attack.<span style="mso-spacerun: yes;"> </span>I don’t
understand how my brother and my parents can watch so much political
coverage.<span style="mso-spacerun: yes;"> </span>Maybe it’s similar to how I
used to find SVU soothing – they find being informed and up-to-date
soothing.<span style="mso-spacerun: yes;"> </span>I find it alarming,
overwhelming and I panic because I feel I have no control over it and it’s so
messy.<span style="mso-spacerun: yes;"> </span>The only way I can currently
handle the news is through reading brief articles and watching people who make
me laugh report on it- like Stephen Colbert.<o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">Even the articles are starting to
really bother me because I see the comments with them.<span style="mso-spacerun: yes;"> </span>Social media is not my friend, as stupidity is
triggering and I can’t see to help myself from arguing pointlessly.<span style="mso-spacerun: yes;"> </span>As if yelling facts into the void of the
internet will fix stupidity.<span style="mso-spacerun: yes;"> </span>I need to
remember what my Great Aunt Ruby always said, “You can’t fix stupid.”<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">But part of me hates that – can’t
we educate, inform and debate our way to progress?<span style="mso-spacerun: yes;"> </span>Can’t I post enough truthful articles to
change someone’s mind?<span style="mso-spacerun: yes;"> </span>Can’t I explain
how science works and how masks work and suddenly it’ll click with
someone?<span style="mso-spacerun: yes;"> </span>Can’t I beg and plead with them
to have compassion and consideration?<span style="mso-spacerun: yes;">
</span>Apparently not.<span style="mso-spacerun: yes;"> </span>And trying so
hard has worn me out, so I’m considering being mainly off of social medica for
October.<span style="mso-spacerun: yes;"> </span>What’s holding me back from deleting
the app are my CF and transplant families.<span style="mso-spacerun: yes;">
</span>I don’t really have any other connections to those people, and I need
them in my life.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">The other reason I’m finding
avoiding Facebook hard is I have so many friends I love who are currently
pregnant or recently gave birth, and baby photos recharge my sou land give me
life.<span style="mso-spacerun: yes;"> </span>I love watching all your
littles.<span style="mso-spacerun: yes;"> </span>I love the innocence of
children and the pure love they have for everything and everyone, and I can’t
remove seeing that joy from my life.<span style="mso-spacerun: yes;"> </span>I’m
not going to completely delete my social media apps or anything, but I’m trying
to avoid scrolling endlessly and arguing with people.<span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;">And I need to let go of the arguing
– I already voted for Joe Biden.<span style="mso-spacerun: yes;"> </span>I
already said my peace – well, I said a lot about why you should vote for Joe,
too, and from where I am mentally right now, that’s all I can do.<span style="mso-spacerun: yes;"> </span>So please keep fighting and loving and living
to the best of your abilities, take care of your mental health, and spam me
with photos of your lovely children.<span style="mso-spacerun: yes;"> </span>I’m
always up for private chats – video, phone, text, whatever.<span style="mso-spacerun: yes;"> </span>So Facebook messenger and text are still
great ways to get ahold of me while I’m trying to avoid the internet.<span style="mso-spacerun: yes;"> </span>I will always be here for my friends and
family – so don’t hesitate to contact me.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span><o:p></o:p></p>
<p class="MsoNormal" style="text-indent: .5in;"><o:p> </o:p></p>Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-59202815598109922692020-01-18T18:33:00.000-06:002020-01-18T18:33:05.211-06:00Best Day<div class="MsoNormal" style="text-indent: .5in;">
Am I a horrible person because I
don’t believe that “my donor’s worst day was my best day?”<span style="mso-spacerun: yes;"> </span>One, it doesn’t make sense – not
literally.<span style="mso-spacerun: yes;"> </span>My donor was brain dead
several days before I was transplanted.<span style="mso-spacerun: yes;">
</span>I assume that was the worst day for his family and loved ones.<span style="mso-spacerun: yes;"> </span>And while I feel very blessed to have new
lungs, beyond grateful to my donor who decided to save the lives of strangers
he would never meet, I wouldn’t say my transplant date is “the best day of my
life.”<span style="mso-spacerun: yes;"> </span>Life-changing, yes.<span style="mso-spacerun: yes;"> </span>I received the gift of life.<span style="mso-spacerun: yes;"> </span>And it’s incredible, amazing, and beyond
words.<span style="mso-spacerun: yes;"> </span>But all I remember from that day
are going to surgery, and a little bit when they woke me in the ICU to prove to
my family I was still there.<span style="mso-spacerun: yes;"> </span>They woke
me long enough for me to open my eyes a little and squeeze hands.<span style="mso-spacerun: yes;"> </span>And honestly, is it the best day of my
family’s lives? <span style="mso-spacerun: yes;"> </span>They sat around, waiting
to hear if I made it through surgery.<span style="mso-spacerun: yes;"> </span>If
I was expected to live.<span style="mso-spacerun: yes;"> </span>And then they
had to see me on a ventilator in the ICU, hooked to up to 12 plus different
lines and IV medications.<span style="mso-spacerun: yes;"> </span>I’m sure it
wasn’t a particularly fun day.<span style="mso-spacerun: yes;"> </span>Or a “Best”
day.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>I know
since my transplant, my loved ones and I have had many “Best Days.”<span style="mso-spacerun: yes;"> </span>My dad and I hiked Parfrey’s Glen this fall,
and that was one of my “Best Days.”<span style="mso-spacerun: yes;"> </span>The
day I danced at Chris and Kyra’s 10-year anniversary party was a very Best Day.<span style="mso-spacerun: yes;"> </span>I spent nearly 6 months in the hospital post-transplant,
and the whole time nurses and physical therapists would ask what my goal was…
and I always said, “I have to be dancing by May.”<span style="mso-spacerun: yes;"> </span>I needed to be there and be dancing.<span style="mso-spacerun: yes;"> </span>And I was.<span style="mso-spacerun: yes;">
</span>I was there.<span style="mso-spacerun: yes;"> </span>I danced.<span style="mso-spacerun: yes;"> </span>I chased Astrid around on the floor and I
told Luca sweet stories about how his parents fell in love as he made a
grossed-out adolescent face.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>One of my Best
Days, I met my boyfriend.<span style="mso-spacerun: yes;"> </span>I decided
after my divorce that I was going to date casually, have fun, and get laid.<span style="mso-spacerun: yes;"> </span>I was going to go out and about on the town
like I couldn’t when I was married.<span style="mso-spacerun: yes;"> </span>And
the first date I went on post-divorce, was George.<span style="mso-spacerun: yes;"> </span>We talked for hours, and we really
clicked.<span style="mso-spacerun: yes;"> </span>At the end of the evening, I
went home super excited, super giddy, and super mad at myself because I really
liked him, and could see myself dating him long-term.<span style="mso-spacerun: yes;"> </span>I could even see my dad liking him – which
was going to be important, since I lied to my dad about where I was that
evening.<span style="mso-spacerun: yes;"> </span>“Coffee with a girlfriend,” was
actually “cheese curds at the Dane with a first date.”<span style="mso-spacerun: yes;"> </span>But that was a “Best Day.”<span style="mso-spacerun: yes;"> </span>I was able to park blocks away, and seem
healthy enough to not scare an interested guy to death.<span style="mso-spacerun: yes;"> </span>I was able to sit on a stool at a bar –
something I didn’t have balance or energy to do before my transplant.<span style="mso-spacerun: yes;"> </span>I was able to chat without taking long breaks
to cough.<span style="mso-spacerun: yes;"> </span>I was able to talk and laugh
without getting winded.<span style="mso-spacerun: yes;"> </span>It was
definitely a Best Day.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>Running on
the beach in Hawai’I with Astrid was a Best Day. <o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>Showing
Luca “Star Wars” for the first time was a Best Day. Returning to my beloved
West Coast Swing Club to dance was a Best Day.<span style="mso-spacerun: yes;">
</span>Hanging on to life in the ICU was definitely not a “Best Day,” but it
was an amazing gift leading to many of the Best Days of my life.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-34607258228608647342020-01-11T18:25:00.001-06:002020-01-11T18:25:57.660-06:00Wednesday<span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;"><i>"Excuse me Paul -- I'm having a problem with this</i></span><br />
<i><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">This credo -- My T-cells are low --</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">I regret that news, okay?</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Alright</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">But CARLA - How do you feel today?</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">What do you mean?</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">How do you feel today?</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Okay</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Is that all?</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /> <br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">BEST I'VE FELT ALL YEAR!</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Then why choose fear?</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">I'm a CFer!</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Fear's my life!</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Look - I find some of what you teach suspect</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Because I'm used to relying on intellect</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">But I try to open up to what I don't know</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Because reason says I should have died</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">Three years ago</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">No other road</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">No other way</span><br style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px;" /><span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;">No day but today"</span></i><br />
<span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;"><i>- Adapted from "Life Support" from Rent <3 </i></span><br />
<span style="background-color: white; color: #222222; font-family: "Helvetica Neue", arial, sans-serif; font-size: 14px;"><br /></span>
Today I felt GREAT. Despite not sleeping much (I'm on an antibiotic for a sinus infection that keeps me awake... ALL. DAMN. NIGHT), I felt AMAZING. What not throwing up can do for you!!! Yesterday, after my asshole doc told me he wouldn't prescribe me the medication I logically should try, I called my PCP's office and got an appointment for today. I went in ready to fight. Ready to plead my case - logically lay out all the reasons trying the version of levothyroxine makes sense. I first talked to her about a couple minor issues, and then dove into my thyroid-vomit saga. The doc cut me off and asked where I would like to have the prescription sent. I explained how the other endocrine doc I saw yesterday for my bones did want to get involved because of "hospital politics." My doc immedicately said, "I don't care if I piss off a Froedtert doc; I don't work there. We're very pro-patient here."<br />
<br />
And that's why I LOVE my PCP and her practice. <br />
<br />
I mentioned to my PCP I had many labs done yesterday. I had 14 tubes of blood drawn, at Froedtert and my PCP sat and went through all the results with me because they hadn't yet resulted in MyChart yet. <br />
<br />
...that's when I got my shittiest news of the day. And my PCP didn't even realize. I saw my TSH level was 100, meaning I need an increase - possibly a big increase - in my levothyroxine. I sighed, and was very thankful that she is allowing me to try the Tirosint. Hopefully, it won't make me sick. <br />
<br />
Next, I asked to see my thyroglobulin level. Thyroglobulin indicates the level of thyroid tissue - or thyroid cancer - in the body. It's complicated, but the level should be zero. Before my radioactive iodine, mine was 150, and today it was 118. It should be zero. I knew right then that I will be facing more scans, more testing and probably more radioactive iodine. <br />
<br />
I walked out of my PCP's office feeling so grateful for doctors who listen, and with a prescription in my pocket, and one on the way to my pharmacy. I felt... mostly happy. Despite knowing I might/probably still have cancer, I felt pretty good. <br />
<br />
I've said this before, but LISTENING to a patient is so. damn. important. I live in this body every day. It is me and me alone that is violently retching and spewing every. damn. day. for months. It's me that is exhausted to the point of being unable to do anything requiring me to be awake before noon. My loved ones - mainly Dad and George - observe patterns more easily than a doctor who has never set foot in my house. So when I and my loved ones discuss something and I say, "Hey, we've observed..." that the doctor says, "Who's WE?" As if me and the people who are most often with me can't see patterns, can't know or talk to people who've been in similar situations. I usually say, "My dad, the DOCTOR and I have observed." <br />
<br />
After my appointment, I went to Panera to simultaneously drown my sorrows and celebrate with food. I called my pharmacy to check on the Tirosint. I was pretty sure we would be paying out of pocket for it, at least until we prove it works better. I was skeptical Walgreens would stock it. But i was told it will be in stock tomorrow, with a copay of $3.25. <br />
<br />
I cried. I was so relieved to not have to fight for one. more. thing, I broke down at a corner table at Panera. I let myself mourn the fact that I can't re-start my life cancer free - yet. A sudden fight came over me. I've always known I would get through thyroid cancer, but it SURE IS A PAIN IN THE ASS getting there. I picked my head up and put in my head phones to groove and dance while I ate my food. I put on a pick-me-up playlist and listened to it all afternoon.<br />
<br />
I danced around to Lizzo on repeat. <br />
<br />
I belted out "<span style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">I do my hair toss / </span><span style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">Check my nails / </span><span style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">Baby how you feelin'?/ </span><span style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">Feeling good as hell" as I tossed my hair and checked my nails. I danced and felt empowered. Lizzo has never really resonated with me until today; today I felt GOOD AS HELL. </span><br />
<span style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;"><br /></span>
<span style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">"</span><span style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">Come now, come dry your eyes</span><br />
<span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">You know you a star, you can touch the sky</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">I know that it's hard but you have to try" </span><br />
<div>
<span style="color: #222222; font-family: Roboto, arial, sans-serif;"><span style="font-size: 14px;"><br /></span></span></div>
<div>
<span style="color: #222222; font-family: Roboto, arial, sans-serif;"><span style="font-size: 14px;">Why have I never listened to this song before? How did I randomly come across it today? Whoever or whatever it was that put that song in my life today, thank you.</span></span></div>
<div>
<span style="color: #222222; font-family: Roboto, arial, sans-serif;"><span style="font-size: 14px;"><br /></span></span></div>
<div>
<span style="color: #222222; font-family: Roboto, arial, sans-serif;"><span style="font-size: 14px;">"</span></span><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">Woo girl, need to kick off your shoes</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">Got to take a deep breath, time to focus on you</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">All the big fights, long nights that you been through</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">I got a bottle of Tequila I been saving for you</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">Boss up and change your life</span><br style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;" /><span jsname="YS01Ge" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px;">You can have it all, no sacrifice"</span><span style="color: #222222; font-family: Roboto, arial, sans-serif;"><span style="font-size: 14px;"><br /></span></span><div>
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And while I don't drink Tequila, and I'm not currently pissed at a guy who's "done me wrong" (unless you count my doc), so many of these lines apply to me today. And that is how I'm doing. I'm feeling "Good as Hell."<br />
<br />
Later in the afternoon or early evening, my thyroid cancer doctor called me to tell me what I already knew. I told him I had already seen my labs, and yet he, to use an over-used term, mansplained my labs to me. I knew what I was looking at. I knew I still have cancer or thyroid tissue and I will need more imaging. All he told me was I still have cancer or thyroid tissue and I need more imaging. Ugh.<br />
<br />
After work, George picked up a cake for me on his way home. He picked up the cutest little carrot cake, that I called, "Carla Continues to Have Cancer Carrot Cake." It had white chocolate shavings on the frosting, and I loved it. It was a brilliant gesture; I loved it. George amazes me with his attitude about our life together. He tells me all the time, no matter what we encounter, we will conquer it - day by day, minute by minute if we have to, and always together. So, he got me a cake to cheer me up, even though I was already in pretty good spirits!<br />
<br />
ALSO:<br />
<br />
Deja Vu. Just a little side note, but today is bringing up feelings from when my CF doc fired me. I looked back, and it was <a href="https://dancing65roses.blogspot.com/2008/01/do-i-have-to.html">January 31st, 2008</a>. Dr. do Pico fired me for being "more-correct" than he was. *EYEROLL*</div>
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Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-8070656302819902732020-01-07T19:10:00.000-06:002020-01-08T19:40:59.358-06:00FLYINGI feeeeeeeeel like I'm FLYYYYYYYYYYING!<div>
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One day vomit-free and I feel like I'm going to conquer the damn world!</div>
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<br /></div>
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I WILL get better!</div>
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I will BE better!</div>
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My life can re-start post cancer (maybe... we still need to see what today's blood work showed)!</div>
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<br /></div>
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I want to dance and sing and jump and QUILT!</div>
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I want to organize the house! I want to quilt and sew and knit! </div>
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I want to write about my experiences!</div>
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I want to see the world!</div>
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<br /></div>
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...but for today, I'm going to continue teaching myself to crochet (basically the only craft I've ever failed and given up on), and make sure my body keeps getting better!!!</div>
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Short-ish note on why I was so sick:</div>
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Levothyroxine. The thyroid hormone you have to take forever once they remove your thyroid. I am very clearly allergic to something in it. It's unlikely that it's the levothyroxine itself. It's most likely the blue dye or additives. This is why I've felt like complete GARBAGE since August.</div>
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<br /></div>
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So, my options seemed to be: find an alternative. CHECK. The alternatives exist and so I thought I'd call my doctor, explain that WE (read: Chris, my dad, me and NOT my doctor) figured out what's wrong with me, and he'd agree to let me try the alternative, even if he didn't really believe me. Nope. He's a bigger tool than I ever believed (and I didn't have a high opinion of this asshole) and said it's not possible and he won't prescribe the alternative. </div>
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What the literal FUCK?!?!</div>
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This drug is literally something I HAVE to take for the rest of my life. My doctor told me it's "the same thing your thyroid produces. You can't have a reaction to it." BUT I could have a reaction to the stuff they add to the tablets. </div>
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I LITERALLY have to take this for the rest of my life. Why would you not help me find a drug that doesn't make me throw up daily? The daily vomiting is putting me at a HUGE risk of aspiration, which can lead to rejection. </div>
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WHAT THE LITERAL FUCK?!?!?!</div>
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What is WRONG with people?! What is wrong with DOCTORS?!?!?!</div>
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WHAT'S WRONG WITH THIS ASSHOLE?!?!?</div>
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This is literally the first doc I've ever had problems with at Froedtert. I'm kind of shocked, because usually their care is sooo good. Ugh.</div>
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<br /></div>
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...but it'll be good. It'll be fine. I'll doctor bounce until someone is willing to fight in my corner, and possibly fight my cancer doctor with me. </div>
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And honestly, I was super pissed... okay, I AM super pissed, but I feel so DAMN good that I really don't care.... until tomorrow comes and I have to figure out whether to take the important med and throw up, or skip it and see what happens (which would probably be allllll the hypothyroidism symptoms, which are awful).</div>
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BUT I MIGHT BE BETTER!!! <3 <3 <3 </div>
Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-23549044450990647012019-04-10T18:29:00.000-05:002019-04-10T18:29:03.211-05:00Sitting in the LibraryI hate this. I'm sitting in the library watching the seconds tick away. I'm supposed to be writing a chapter for my book about my ex-husband. <br />
<br />
Groan.<br />
<br />
I am writing the chapter that introduces him as a person - before things were terrible. Before he left. When I was really happy. <br />
<br />
And that's some of my problem - I was never truly UN-happy. At least I didn't think I was unhappy. Maybe I was too sick to pay attention to my marriage, but I didn't think it was so bad until Dan announced he was leaving me. <br />
<br />
In retrospect, of course, there were things that were terrible, and I'm doing much better now. <br />
<br />
I think sometimes I'm still stunned that all this happened, that this is my life. <br />
<br />
Today I ran up the stairs and thought, "Shit. I have different lungs in me." Sometimes, I almost forget. <br />
<br />
Today my writing coach said to me, "W<span style="font-family: "Times New Roman", serif; font-size: 12pt;">ell, cripes. You just had your lungs torn out. Then your heart was torn
out as well."</span><br />
<span style="font-family: "Times New Roman", serif; font-size: 12pt;"><br /></span>
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">And it's true. I was shocked at how I was mistreated and abandoned less than three months after my double lung transplant and three months before I would spend any long stretch of time outside of the hospital. Did that happen to me? It seems surreal. </span><br />
<span style="font-family: "Times New Roman", serif; font-size: 12pt;"><br /></span>
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">The absence of my husband and my mother are both very surreal - they were the first voices I heard when I woke up from surgery. And they're both gone. </span><br />
<span style="font-family: "Times New Roman", serif; font-size: 12pt;"><br /></span>
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">At times I'm still so angry. I'm angry because I had wonderful post-transplant plans. I was going to travel the world with my dad and brother. I was going to sew my little heart out. I was going to dance, dance, dance and go to competition weekends and have so much fun with my friends. And a lot of that isn't possible without the income I had while I was married to Dan. Dan made these plans with me. Promised me these things, and now he's gone and sometimes, I'm still very angry at the plans he destroyed. </span><br />
<span style="font-family: "Times New Roman", serif; font-size: 12pt;"><br /></span>
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">My health has made some of those plans difficult as well, but I feel I was more prepared for that to be my obstacle than a lack of funds. I'm used to having to give up things because I'm sick. I do what I can, and make it work. It's much harder to "make it work" when money is the issue. </span><br />
<span style="font-family: "Times New Roman", serif; font-size: 12pt;"><br /></span>
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">I don't want to confuse anyone - I LOVE my life now. In most ways, I'm better off than when I was with Dan. I love where I live, I love who I live with - Dad and soon, George - and I love the things I'm doing. I'm working on getting stronger so dancing is easier. I'm sewing as much as my legs will tolerate. I have taken up embroidery, which I LOVE. </span><br />
<span style="font-family: "Times New Roman", serif; font-size: 12pt;"><br /></span>
<span style="font-family: "Times New Roman", serif; font-size: 12pt;">I'm just hating writing about what I had and thinking about that part of my past because it makes living this different present emotionally challenging. </span>Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-34763641674674787592019-03-24T12:35:00.001-05:002019-03-24T12:35:57.347-05:00"Five Feet Apart" - The Review *WARNING: SPOILERS*If you have not seen the movie "Five Feet Apart," please quit reading. It's a movie worth seeing - worth getting a feel for what having CF is like. So, stop now. Go see the movie, and come back to read what I thought. I want to encourage people to see this movie - especially if you want a small glimpse into my world. Is it my exact story? No. Is it close? Not really. But it IS a CF story, just not mine. <br />
<br />
First, I want to say I really liked the movie. I thought it did a descent job of portraying a young life (well, 3 young lives) with CF. Are there inaccuracies? Of course, it's Hollywood. Is the story a little cheesy? Yes. But despite a few negatives, I overall really enjoyed the movie. I also cried through about 85 or 90% of the movie. The parts where I wasn't crying made me laugh or cringe at inaccuracies, and sometimes it was all three. <br />
<br />
My biggest pet peeve was how the hospital stay was depicted as kind of a playground. The main character went to the NICU whenever she wanted, the two main characters ended up swimming in a pool late at night (like, what the hell?) and carried around a pool cue to keep them "Five Feet Apart." *eyeroll*. It was implied she found the pool cue in the rec room, but I don't think so. Not for a CF patient. When I was in pediatrics, the CF patients were kept on the infant side to reduce our contact with other sick children so we wouldn't pass our nasty bugs to them. I wasn't allowed in the "rec room" like other sick kids. I admit that pediatrics was much less strict about rules, in that I could roam the halls or go out on a pass, but, some of that was also because it has been 12+ years since I was in pediatrics. <br />
<br />
I did like how the movie explained meds and treatments, and showed the main characters coughing and getting out of breath. I don't feel they were "sick enough," but showing the reality of how sick someone on the transplant list is, would not be sexy at all. CF "tuneups" aren't really fun. The first few days I was always too sick to leave my room. Were there times I roamed the hospital? Absolutely. Was there a swimming pool or a kitchen that was unlocked? No. Nothing that fun. <br />
<br />
In regards to the characters not being "sick enough," for example, at one point, the main character rushed up several flights of stairs to beat her nurse to the NICU, and then pretends to be asleep. Once the nurse leaves, she has a coughing spell, but there is NO WAY she climbed those flights of stairs. With oxygen. While on the transplant list. I mentioned that scene to my ex-husband when he asked about the movie, and he said, "You couldn't go up the one flight in our house when you were on the list!" And it's true. Once, while on the list I had to go to the basement because there was a tornado warning, and I needed help from my mother and Dan to get back up - and even with them helping me, it took about 5 minutes for me to climb the stairs. I had to stop and rest. There was no winning races and then coughing- I would've just collapsed.<br />
<br />
The thing they got the most right? The emotions. The two main characters who fall in love have a third CF friend, who, *SPOILER* dies. And it wrecked them all. Their nurses, too. That's what happens. My best CF friend, Lauren, and I were in the hospital at the same time a few times, and we did things like in the movie - one night late at night, we went roaming around the hospital. Seeing if there were unlocked filing cabinets, being creeped out by ghost stories, and riding our IV poles. We shouted to one another down the hall, and communicated via text from next door. It was the best hospital stay of my life because she was there. Lauren didn't take her CF too seriously, and always made me laugh and then cough like crazy. We were friends with the nurses and that camaraderie was shown perfectly in the movie. It showed how much we care for each other, despite the fact that we're not supposed to be in the same room because of cross infection issues. <br />
<br />
And in 2011, Lauren died. I was wrecked and so angry like Stella was in the movie. She left a huge hole in my heart, as have all the CF friends I've lost. The movie did a great job showing this despair. Knowing that your close friend died from the same disease that's coming for you. It's a hard emotion to process. It's hard to keep living because of survivor's guilt. But somehow you keep going, keep living because you know your friends wouldn't want you to give up this fight. <br />
<br />
As I watched "Five Feet Apart," there were times where I was rooting for the two main characters to say "Fuck it all!" and end up together. Personally, I HATED the last scene. Will says goodbye and basically breaks up with Stella as she's waking up from her double lung transplant. Dick. Move. She just woke up and the guy she loves dumps her. And it showed her crying and devastated, but still on the ventilator. It's incredibly hard to cry while on the ventilator. Also, I received bad news a couple times while I was in the ICU, and it made everything so much harder. He should have waited until she was doing better. You wake up confused enough from surgery, how terrible to dump her as she's waking up with new lungs - which is supposed to be happy. <br />
<br />
But overall, I really enjoyed "Five Feet Apart." If you have any questions about the movie or CF, transplant or my life, please never hesitate to ask! I enjoy spreading awareness of what CF is like, and am an open book. <br />
<br />Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-2515407231193864912019-03-20T20:03:00.000-05:002019-03-20T20:03:50.569-05:00BlockedI feel blocked tonight.<br />
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I usually come to the library on Wednesday nights, now, and write for at least one hour. I used to go dancing on Wednesday nights, but lately I've had so many issues with my legs getting swollen or my lungs not being the best, or being afraid of catching something. I am sad that my pre-transplant dreams of dancing up a storm went up in smoke with the complications I had and still have. I thought I'd be joining my friends in advanced classes, dance weekends, and private lessons. I took a couple more advanced classes last summer - but I was too sick to continue. I was always getting nauseated or nearly passing out during the more challenging parts. My body still can't keep up and it pisses me off. Also, my financial situation is almost the exact opposite of what it was when I was married. When I still had CF lungs, I didn't mind if I missed a class here or there, even though I'd already paid, because money wasn't a big deal. It's a bigger deal now, and I feel I need to attend every class I sign up for, and my attendance record is spotty, at best. So now, I come to the library and write instead. <br />
<br />
Well, I usually write, but tonight, I feel stuck. I was first trying to write my review of "Five Feet Apart," but the right words wouldn't come. Next, I tried working on my book, but I didn't feel like working on the piece on my mother (which is almost done, yahoo!), and I'm feeling too lazy to think much. The next two pieces I have to work on are about my brother, Darin, and my ex-husband and they will take some more thought to become cohesive. <br />
<br />
I guess was also feeling lazy yesterday when I laid out a quilting project I'm working on. I didn't pin the backing to the carpet like I usually do, so when I went to quilt it today, the back ended up all wonky. I then spent about an hour and 1/2 ripping out what took me a 1/2 hour to do. So, now I can't stop thinking about what a waste my day has been. <br />
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I usually really get into my writing on Wednesdays at the library. It's quiet and peaceful, but today I am antsy. <br />
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I mean, I just spent 40 minutes playing Bejeweled, and about 10 minutes looking for my mom's mac and cheese recipe (by the way, it's from the Taste of Home website... it's with Gruyere and white cheddar cheeses, and it's AMAZING). And I spent the rest of the hour absentmindedly typing this random blog post, when I have much more important things to work on. <br />
<br />
Well, now my hour is up. And look! A blog post! Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-9045575352684968302019-03-13T19:58:00.002-05:002019-03-13T19:58:38.307-05:00"Five Feet Apart"On Friday, the movie "Five Feet Apart" opens. I'm thinking of going opening weekend. It's a romance about two teens with CF. The kicker is they are supposed to stay six feet apart for infection control. There's my first problem with the movie. The CF Foundation around 2014 changed that policy to say that no CFers should ever be in the same indoor space. At outdoor events more than one CF person is allowed to attend, but there they must remain six feet apart. The whole premise is wrong, according to current policy (say, the last 5+ years or more). Here are more of my thoughts so-far. <br />
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I hate this movie. I hate the inaccuracies already. I hate the bad comparisons the HR team made (they compared a long distance relationship to the situation in the movie and to the hardships of cystic fibrosis. It's not the same. It's nothing like that. Not being able to touch the person you love, EVER, because of a risk of cross-contamination is much bigger than being away from someone for a long time. Eventually you are reunited with your loved one and you can hug and kiss them. That's not so in this movie between the main characters). Also, there is no way they will get the medical stuff correct. It's too complicated and will be simplified for the movie. I hate that it seems like a typical teen romance movie. It seems they are exploiting CF for the dramatic near-death situation and drama to make a desperate romance work. ::eyeroll:: I think there could be a smart, funny, articulate character with CF in some movie. As a friend of mine suggested, why not a super hero with CF? Or a Bond-like character? The CF would be another obstacle conquered or the reason the hero turned out the way he or she did.<br />
<br />
I love this movie. I love they are bringing CF to the big screen in a way that has so many people talking about CF. We need awareness. I'm not sure this is the correct type of awareness, but any awareness is better than none. Will the movie show how much time we spend fighting with our health insurance or tying to get or keep health insurance? Are these teenagers privileged and don't have to worry about that? Are they Canadian? I think I'd rather they be Canadian. Then the glaring question of "where is that health insurance coming from?" wouldn't bother me so much. I was a privileged white teenager, but I still had to worry about my health insurance. My dad had to change jobs at least once to keep health insurance for me and I've worried about and fought with health insurance ever since. I'm currently in a health insurance struggle for the ages. It's terrifying, and I have a feeling it will be a big thing that gets no attention in this movie. <br />
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I guess I should come up with more reasons I love this movie. It looks to be a rom-com. And I'm girly and love a good rom-com. (God, I hope it's a least a 1/2 way descent movie). I hope the story is not too cheesy, I hope there are some good twists, and I hope they realize that the small-ish risk of cross-contamination or a life-shortening bacteria is worth being together. Now, I doubt that. I personally believe that if two CFers culture similar bugs and no super nasty ones, the risks to dating are small. The risks with friendship are even smaller, and in my experience, having CF friends is way beyond worth the small risk of infection. <br />
<br />
I used to belong to a support group, and even though we followed CF guidelines in the meetings, we were friends outside of them. We hugged and hung out like normal humans, and there was never any sign of cross infection. I had a close friend stay at my house and I stayed at hers. We did our vests and nebulizers together. I never cultured anything different and neither did she. <br />
<br />
Anyways, I know the movie will make me cry. I've loved people with CF. Some of my best friends and mentors have or had CF. I know people who married other CFers. I contemplated dating another CFer when I was in my early 20s, but he lived out of state and I knew it wouldn't work out. I have cared and currently care deeply for people with CF, and I have CF. So, for me, there's an extra layer of emotion there. I've lived the CF life they are trying to portray - the difficulties, ups, and downs are mine. I know them intimately. <br />
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In one of the trailers the female lead has the male lead do his treatments with her to make sure he does them. I used to do that with my friend Lauren. I've done that with other friends, as well, to keep myself accountable, but I did it with Lauren because I was better at doing mine. Lauren passed away in 2011. I'm sure this movie is going to tug at those heart strings that still love my friends who have passed. I miss them every day. I keep photos of my angels by my bed. <br />
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I'm excited and nervous to see "Five Feet Apart," and I'm anxious to report my feelings and thoughts on the movie. I can't wait to write what glaring errors there were, and what they got pretty spot-on. I can't wait to write about how it made me cry or why it kept me laughing. <br />
<br />
<br />Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-15011910579539133772019-03-09T14:06:00.003-06:002019-03-09T14:06:46.015-06:00Why I WriteToday a friend of mine posted <a href="https://www.latimes.com/local/abcarian/la-me-abcarian-mallory-20190308-story.html?fbclid=IwAR0xbprFXyOZBmASw02ryqwIMAOPixvWCNh3tlbghUQ0Zpea40dlmAD2vRg">THIS</a> article on Facebook. At first I didn't read the article. I couldn't. My first thought was, "Oh great... someone beat me to writing my book." I was a little bit angry that this CF mom got her daughter's journals published by a big publishing house because I know the odds are that won't happen to me. <br />
<br />
The book I'm working hard on is a memoir of my life with cystic fibrosis and my experience with double lung transplant. I've taken the journals I've kept since I was 11 and inserted key parts into my memoir. And the woman in the article had her journals posthumously published. <br />
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I've joked in the past about someone coming across my journals when I'm gone and publishing them, but that's not what I want. I want to write while I'm here. I want to share my story with people who identify with it and with people who can learn from it.<br />
<br />
This is the real reason I'm working with my writing coach now instead of waiting anymore. It was the right time to write. I've been through CF life, and my transplant journey, and a marriage, a divorce, a new relationship. I survived high school and a stalker. I am surviving with PTSD, anxiety and depression. I have troubles with my mom and possibly the world's most wonderful father. I have a wonderful brother, and friends who are like siblings to me. I have a niece and a nephew I adore. I love my boyfriend. And I want all these people I love to be able to read about what I've been through and see the important roles they've played. I want people to realize where my strength came from - love - and that they, too, can be strong. I want to help even just one person by telling my story. Inspire one person to leave a toxic relationship or stand up for him or herself. I want someone to learn to self advocate in the medical world. <br />
<br />
I'm glad I read the article. I think there is room for everyone's survival memoir. Mallory's is just as important as mine and I'm glad her dream of having it published is coming true. Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-21128077165226078112019-03-07T17:48:00.000-06:002019-03-07T17:48:15.971-06:00Blog, RelaunchHey Everyone!<br />
<br />
It's me! I'm back! And I have new lungs! I thought I would relaunch this blog because I have a lot to say and I'm really tired of making incredibly long Facebook posts. <br />
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There are many, many topics I would love to cover here - including experiences with my lung transplant and the complications I had, my troubles with insurance companies, living my life post-divorce, etc. I also want to keep people updated on my health, but hopefully that will be a small part of my blog because I will continue to do well!!!<br />
<br />
Thanks for reading!<br />
<br />
CarlaCarlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-91307734448902898502019-03-06T19:20:00.002-06:002019-03-06T19:20:43.751-06:00Goals 14 Years Apart<br />
<div class="MsoNormal">
June 27, 2005, age 19<o:p></o:p></div>
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Goals:<o:p></o:p></div>
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<!--[if !supportLists]--><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="mso-list: Ignore;">1.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->Gain weight. For real - I want to be 135.
Currently, I weigh 122. I know that 135 is an unrealistic goal, but it's the
healthy weight for someone of my height. I really want to weigh 130. I need to
change my views on food. I've realized that for me, eating is part of my health
routine - it's just as important as my other treatments. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: normal; margin-left: 40.5pt; mso-list: l0 level1 lfo1; tab-stops: list 40.5pt; text-indent: -.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->Stay at school for the full semester. I will
take care of myself - and if one of my classes is too stressful or taking up
too much time, I will just drop it. Taking care of myself is a full-time job,
so from now on I'm looking at things differently. It's like I'm taking a few
classes on the side, but my job comes first. My health is first. I can always
re-take a class, but I can't un-do damage in my lungs.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: normal; margin-left: 40.5pt; mso-list: l0 level1 lfo1; tab-stops: list 40.5pt; text-indent: -.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I will not be hospitalized before next May. Dr.
Green said when I got out of the hospital in April that he seriously doubted
that I would be able to stay out of the hospital for a year. Since he said
that, it's been my goal to prove him wrong. I'm staying out of the hospital for
at least a year. I'm not going to be stubborn on this one - if my lungs are
bad, then of course I'll let them hospitalize me, but this is my goal. I want
to fight and be strong like I've always done. Being hospitalized for my lungs
once was enough for me. I'd rather it never happen again.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: normal; margin-left: 40.5pt; mso-list: l0 level1 lfo1; tab-stops: list 40.5pt; text-indent: -.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="mso-list: Ignore;">4.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I want to graduate from UW Madison. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: normal; margin-left: 40.5pt; mso-list: l0 level1 lfo1; tab-stops: list 40.5pt; text-indent: -.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="mso-list: Ignore;">5.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I'm going to throw a huge party for everyone I
know on my 33rd birthday. 33 is the average life expectancy for someone with
CF, and I know I'm above average so I'm going to make it to at least 33. MARK
YOUR CALENDARS - JULY 30th 2019 - HUGE PARTY.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
March 6, 2019, age 32</div>
<div class="MsoNormal">
Review of goals from almost 14 years ago:</div>
<div class="MsoNormal">
</div>
<ol>
<li><span style="text-indent: -0.25in;"><span style="font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span><span style="text-indent: -0.25in;">I gained that weight.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I gained the hell out of that weight.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I ended up at 200 lbs by the end of 2011.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">And then I lost weight.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">After transplant, I got down to 115.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">They nearly needed to put in a feeding tube.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">And now I’m a healthy 145 again.</span></li>
<li>Nope! Was never able to complete another semester.</li>
<li><span style="text-indent: -0.25in;">Nope! I was hospitalized in September for 6
weeks.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I tried still going to my one
class everyday and it was such a shit show.</span><span style="text-indent: -0.25in;">
</span><span style="text-indent: -0.25in;">I got in a car accident while I was technically inpatient in the
hospital… ahhhh pediatrics where you can leave for almost anything.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I left that hospital stay to go for a Sunday
drive with my dad and to go dancing with my best friend.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I literally laughed out loud at the “being
hospitalized for my lungs once was enough.”</span><span style="text-indent: -0.25in;">
</span><span style="text-indent: -0.25in;">Who was I kidding?</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">And here I am
almost 14 years later with new lungs!</span></li>
<li><span style="text-indent: -0.25in;">HAHAHAHAHAHA! But they clearly didn’t want me to
graduate or they would’ve been more accommodating.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">I don’t care if I ever have a degree in
anything.</span></li>
<li><span style="text-indent: -0.25in;">THIS!</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">The
life expectancy for CF is now around 37, I think.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">42 if you’re in Canada bc, gee, socialized
medicine.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">BUT I could still throw a big
party for my 33</span><sup style="text-indent: -0.25in;">rd</sup><span style="text-indent: -0.25in;"> bday! It’s 2019!!!</span></li>
</ol>
<br />
<div class="MsoListParagraphCxSpLast" style="mso-list: l1 level1 lfo2; text-indent: -.25in;">
<o:p></o:p></div>
<br />Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-84578218077029622952016-10-04T14:46:00.001-05:002016-10-04T14:46:07.592-05:00Fall: Then and NowI love fall. I'm not a pumpkin spice girl, but I am a boots girl. I bought two new pairs this fall because I love boots so much - I have boots in 4 colors now. So I think I'm set for awhile. <br />
<br />
Today I went and put on my leggings and top, and as I was putting on my socks I had a flashback to last fall - which was pretty damn rough. So I wanted to make a list of things I am thankful for today that weren't possible last year. <br />
<br />
I'm thankful that I was able to put my socks on today - all by myself - and then I was able to walk to a different room and put on my boots - all by myself. All this, while not wearing oxygen. Last year I had to have Dan help me get dressed and undressed most days because it was too hard to breathe and get dressed at the same time. <br />
<br />
I'm thankful that I can shower on my own - a real shower, in the shower. Last year Dan was helping me clean up in the bathtub and washing my hair. But I'm well enough to do it all by myself.<br />
<br />
I'm thankful I can make my meals.<br />
<br />
I'm thankful Dan can spend the whole day at work without worrying about me falling or calling him because I'm in some desperate need of help. <br />
<br />
I'm thankful for the dancing I've done so far this fall - and hopefully *fingers crossed* there will be a lot more dancing this month! I love my dance friends, and I'll continue to go and socialize even when I can't dance, but I love dancing. It means the world to me. <br />
<br />
I'm thankful that I had the energy to put up my fall decorations this year - all by myself. Last year I think my mom and Dan helped me, but I don't remember. I know I didn't do much decorating for Christmas, but hopefully that will be different this year as well. <br />
<br />
I'm so very thankful that I just had a virus over the weekend and it wasn't my lungs failing me... because I'm not ready to be as sick as I was last fall. Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com1tag:blogger.com,1999:blog-8963729539410388556.post-42378479937238450822016-04-13T12:46:00.001-05:002016-04-13T13:01:36.211-05:00PerspectiveLast Wednesday Dan and I went to a quaint little restaurant for dinner. We sat down and ordered, and I told Dan I would go to the bathroom and be right back. I walked to the bathroom and as I pushed open the door this wave of memories hit me. The peacock wallpaper reminded me how hard it was to push the door open and how I couldn't breathe just from trying to walk the 50ish feet from our table to the bathroom. The memories were from the last time we were there, about December 26th. We were there for brunch that day, and it was a struggle to get me out of the house. It was a struggle to get me out of the car and into the restaurant. I had a coughing spell and had to sit down in the front area of the restaurant and catch my breath before I could hobble and gasp my way to where my friends were seated. Soon after I sat down, I had to go to the bathroom. Dan offered to walk me there because I was breathing so poorly, but I refused his help because I thought, "if I can't make it to the bathroom on my own, I should be in the hospital." The door was so hard to push open and everything I did in the bathroom was hard. Setting my oxygen concentrator down so I could do my business. Picking the oxygen concentrator back up, washing my hands. Opening the door again. Part of me wondered why the hell I bothered. And four days later we would call 911 because my breathing was so labored, and I would spend the first two weeks of January inpatient and wondering if I was going to survive my trip to Hawai'i. <div><br></div><div>Fast forward to last Wednesday. I walked into the restaurant like a normal person - no oxygen, no coughing spell, just me. I walked from our table to the bathroom without getting out of breath, and opening the door was easy. </div><div><br></div><div>All of that is possible because of pulmonary rehab. I have been exercising my butt off and it's been paying off. I had a check up on Monday and my lung functions are about the same as when I was released from the hospital - and that was the best they had been since August! </div><div><br></div><div>I feel so lucky to be able to get my lung functions up this much, and I'm hoping to get them up a little more. I feel lucky to be doing lost things without oxygen, and to be able to do things like open doors so much more easily. The strength I've been building in rehab really shows. </div>Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-3074807481073369982016-03-28T15:21:00.001-05:002016-03-28T15:21:35.120-05:00FORTYIt took me EIGHT months, but I got my FEV1 back up to 40%. I'm being discharged from the hospital today and don't have to do home IVs this time.Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-19658702773323589632015-09-06T10:48:00.002-05:002015-09-06T10:48:46.076-05:009-6-2015 Health Update<div class="MsoNormal">
I’m home! Can you
believe it? Because I’m having a hard
time believing it’s real and it could last.
So much has happened in the last few days, I feel writing a giant update
on my blog is the best way to update everyone.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The general background: <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After I got a cold around the 4<sup>th</sup> of July I was
hospitalized for 3 weeks. I came home,
not really better, and then got slowly sicker. I was home for 2 weeks, and then
I ended up being taken by ambulance to a nearby hospital because my pulse ox
was so low and my pulse was so high. I
went home on oxygen. Less than a week
after that, I was back at the hospital in Milwaukee and spent almost 2 weeks
there. </div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
The more specific update and recent details:<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On Friday I did my PFTs.
I was POSITIVE they were going to be at least a little better. On Tuesday my FEV1 was 34%, and on Friday I
was hoping for at least a 39%. My
reality was 30%. My FEV1 went down, of
all things.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
We’re all baffled. Dan
and I, my parents, and my doctors are sort of stumped as to what the hell is
going on with my lungs. My CT scan of my
lungs was fairly clear and looked really good for a pair of CF lungs. It definitely doesn’t match my numbers, how I
feel, or why I’m still on oxygen. My
doctor, Dr. B, came to my hospital room and we had a very long chat about what
the plan should be and where we go from here.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
First, this all could still be viral. Dr. B said that sometimes it takes up to 12
weeks for a virus to clear the system of a CFer and since we’ve kicked the shit
out of both the MRSA and pseudemonas with so many IV and oral antibiotics, it’s
probably time to stop the IVs. I am on
one IV at home to treat a couple little other random bugs that were growing in
my last culture. We’re hoping and
praying this is viral and will go away in the next 4-6 weeks and I’ll get
better. I will work my butt off and get
better.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My parents and I discussed the mannitol, and then I
discussed it with Dr. B. When my mom
started making it for me, I started using it more (almost daily) because I was
no longer trying to make my supply last as long as possible. This coincides with needing prednisone more
often, so I’m going to back off on the mannitol and go back to doing it 1-2
times per week. Hopefully this will
reduce some inflammation in my lungs. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The prednisone could also be causing rebound inflammation
now because I’ve been on such a high dose for so long, so we’re going to taper
down the prednisone very slowly. It’s
going to take about 2 months for me to get off of the prednisone, which is
sad. I’d really like to sleep better,
eat less, and have a slimmer face again.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A VERY exciting thing is I got approval for the new
AffloVest – the vest that has no tubes or a box. It can run on a battery so you can wear it
anywhere and you can wear it and be active.
Like, I could be ironing and wear my vest. I could ride my stationary bike and wear my
vest. I could wear it in the car or on a
plane. It’s very exciting! I’m going to try to do my new vest 1-2 times
per day along with 1-2 manual chest PTs.
The more treatments the better! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When my new vest arrives next week, the first thing I’m
going to do is wear it while I ride my stationary bike. I’m so excited to do that! The next key part of our plan is
exercise. I must exercise. First, to kick my lungs into shape and
second to lose weight. I need to lose
10-15lbs before I’d be eligible for transplant.
I thought that was odd, but it’s what Dr. B said. I’ll talk about the T word in a minute.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I talked to my psychiatrist and Dr. B and we decided I can
go back on the antidepressant I had to stop cold turkey to go on an antibiotic
for my lungs. Dr. B and I don’t feel we’re
going to use that antibiotic (Zyvox) all that often, since it was a major
culprit in causing the terrible tachycardia, and some other reasons. So I’ll go back on the
PTSD/depression/anxiety med that was working pretty well. Yay serotonin in my brain!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That’s our basic game plan. Med changes, lots of airway clearance
and exercise, and good rest at home. Do
those things and wait and see if I get better.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. B presented me two (well three) other possible options
to try. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]-->1)<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Trying a drug called “cystagon.”</div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]-->2)<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Being part of a clinical trial in Canada where I
would receive inhaled nitric oxide. <o:p></o:p></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]-->3)<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Transplant<o:p></o:p></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<br /></div>
<div class="MsoNormal">
The prescription for the cystagon had already been sent
out. We’re waiting to see if my
insurance will approve it, or if they’ll need a lot of paperwork to approve
it. I’m not really sure what the drug does,
or why I’ll be taking it - I clearly
need to be reading medical journals instead of typing this - but Dr. Biller said it might help me, so I’ll
try it</div>
<div class="MsoNormal">
. <o:p></o:p></div>
<div class="MsoNormal">
The clinical trial in Canada is an interesting option. I’d love to be part of that. The hard part will be it will require me to
go to Vancouver for about 2 weeks with little to no notice. And inhaled nitric oxide. I need to read more about that in cystic
fibrosis as well. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dr. B brought up transplant.
I’ve talked to her about transplant before, but it’s always been brought
up by me because I had a specific question.
Dr. B said that it’s an option, but she “doesn’t think we’re there yet.” And she told me that I need to lose about 10
pounds because my BMI is a touch too high to qualify for a lung
transplant. Honestly, I’d rather be in
this boat than needing to gain weight to qualify for transplant. I think losing is easier than trying to gain
weight when you’re sick - and I’ve been on both ends. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
So that is the update on my physical health. I’m home, but not well. I’m still happy to be home and working hard
here to get better. It’s much better for
my mental health – which I’m hoping to discuss in a different post soon. <o:p></o:p></div>
Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-87189282157870152152014-12-31T11:44:00.001-06:002014-12-31T11:44:37.678-06:0010 YearsI've been wanting to write this post since November, but about that time I put up an item on my etsy store and got overwhelmed with orders. I've finally found a moment to sit down and write this (despite having about 3 quilts I still need to make), so here it is.<br />
<br />
November 17th marked 10 years. Ten years since I almost died. Not "almost got hit by a bus" almost died, but "lost half my blood volume and needed emergency surgery" almost died. I was in my first semester of college and one day on my way to my Intro to Engineering class I had a sharp pain that caused me to double over. I called my mom and let her know that I had the pain, but I was still going to class. I went to class, and then I went my chemistry lab. I informed my TA that I probably had an appendicitis, so if I doubled over in pain or collapsed, they should call an ambulance. But I really wanted to be there and to complete my lab. After chem lab I walked back to my dorm basically doubled over in pain the whole way. I decided to go to the ER. I took my backpack full of books (because I had a calculus midterm the next day and I needed to study, duh), and hopped on the bus to the ER. I TOOK THE BUS TO THE ER. Looking back, I was way too stubborn and dedicated to my studies. <br />
<br />
I waited in the ER for a long time, and studied for my midterm while doubled over in pain. I called my mom and asked her to drive the two hours to where I was going to college. She arrived as I was being taken to CT. I was so relieved. <br />
<br />
This is getting long, so I'm going to make a REALLY long story shorter and focus on the important parts. <br />
<br />
A mess of things happened in the ER. They said I was full of poop and that was causing my pain. I disagreed. I pooped all the poop out and the pain wasn't any better. Mom and I were sent home from the ER around 4 am, We ate from the vending machines. Cheetos. Mom slept on the floor of my dorm room. Once they were open, we went to my CF clinic to get some actual help. They called a surgical consult and then I was on my way to have my appendix out. <br />
<br />
I woke up from surgery and made sure I could still do a triple integral, and then went back to sleep. Because midterms were still incredibly important at this point. In the morning, a med student woke me. He jabbed my surgical site; I backhanded him. I was given a med I didn't want to take. My mom fed me some Jell-O, and I fainted. I wanted more Jell-O but it got spilled when I fainted. I had no blood pressure. My mom DEMANDED that surgery come see me. They didn't come for hours. Finally she demanded I be seen by pulmonary, and they demanded that surgery do something, I was almost dead. My pupils fixed and dilated. I was in and out of it. I felt a darkness pulling at me and I fought it off. I fought hard. I thought, "My parents, my doctors and I haven't fought my CF this hard for 18 years for me to die from an appendectomy." The darkness faded. I gave my mom a "thumbs up" with all the strength I had, and she began to cry. I was trying to tell her I knew I would be okay. I had a CT that showed a ton of blood in my abdomen. I wanted my mommy to sign the surgical consent form for me, but I had to do it. I was barely able to lift my arm, but I made an 'x'-like thing on the paper. I had emergency surgery. <br />
<br />
I woke up. I couldn't remember how to do a triple integral. It didn't matter. A nurse was wiping vomit off my face because I had thrown up in the OR. I had a garden hose in my nose. I was panicked. I thought they had punctured a lung. They hadn't, but my lungs were full and weak. I had three blood transfusions. The rest is a blur.<br />
<br />
It was a long time, but when I could finally lift my head and whisper, I said to my mom, "Call. Sarah." My mom had already saved my life, but somehow I knew I would need the support of my childhood best friend. <br />
<br />
I didn't fully recover for 8 months. I tried to go back to college and my classes about a week after my surgeries. I'm going to blame that decision on complete determination to not let anything medical derail my college dream and the brain damage I had from lack of blood. <br />
<br />
I did have brain damage. I was lucky I was young so I recovered. I had problems following conversations, and figuring out puns. Fast TV shows confused me and wore me out. I once told my mom, "I feel like I'm a Monet painting. From far away I look pretty and put together, but once you get up close I'm fuzzy and messed up." <br />
<br />
My mom literally saved my life during this ordeal, and she nursed me back to health in the following months. I was so sick for a while my parents couldn't leave me alone. They had to go to a closing a couple hours away, and if I remember correctly, they had my brother stay home from school to babysit me. He might have had a day off, but I know Darin babysat me - his older sister. <br />
<br />
Socially, recovery was hard. My college friends were amazing. I had only met them months before, but they were so supportive and wonderful. One friend took me to the doctor, they all came to check on me in my dorm room, and they would go to the grocery store with me so I could get the milk I needed to keep my weight up. When I was at school I did better, but I was honestly too sick to be away from home, so I went home. <br />
<br />
Home was a disaster. What few friends I had in my hometown were away at school, and one friend in particular was awful to me. I thought she was my best friend, and the first time she came to visit after my surgery she brought her new best friend to meet me. I was so weak I couldn't follow their conversation and when they left I just cried. We had an ugly parting of ways, and I didn't know if I was going to be well enough to go back and be with my new amazing friends at college. <br />
<br />
The only person in my hometown who came to visit me more than once after I got home was Sarah. Whenever she was home over that holiday season she would come visit. She was wonderful. If I just wanted to rest she would just sit with me. She took me to visit my favorite teachers - even our favorite elementary school teachers. She invited me to go sledding, and when I was too weak to walk back up the hill she told me to sit on the sled and she pulled me up the hill and suggested we just go home and watch a movie. She was, and is, the best. <br />
<br />
My mom saved my life physically, but I was really depressed after my surgery - I had brain damage and was so weak and frustrated. I lost the person I thought was my best friend, but my TRUE best friend showed her colors and pulled me out of my funk. She gave me a reason to keep fighting every day. I had to fight very hard, but she helped me see it was completely worth it and I was loved. <br />
<br />
Right about this time ten years ago Sarah took me sledding. She pulled me up the hill and helped pull through the toughest time in my life. I am forever grateful for her. <br />
<br />
I could never thank my family and Sarah enough for getting me through that ordeal. I owe them my life and all the happiness and joy I have experienced since. I love them all infinitely. I am infinitely grateful. As awful as everything that happened was, it brought me and Sarah back together and gave me perspective on how short and wonderful life is - and I gained that wisdom much earlier than I probably would otherwise. And I am grateful. <br />
<br />
I can't believe it's been 10 years. <br />
<br />Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com2tag:blogger.com,1999:blog-8963729539410388556.post-7148673459580019832014-08-29T11:45:00.001-05:002014-08-29T11:45:47.050-05:00My Life Story, AbridgedI'm really tired of this dance I have to do with my CF clinic. I don't know what else to say, other than that. My parents and I have always had to dance with the CF clinics in one way or another. My best CF clinic was the pediatric clinic at UW Madison, but eventually we had to dance with them too. <br />
<br />
I'm just so fed up and annoyed because being sick is hard, and then dealing with doctors and clinics is hard. I would rather just do things on my own and not deal with doctors at times, because they and their staff make my life more difficult. <br />
<br />
This is the story of my two week dance (thus-far) with my current clinic:<br />
<br />
Last Tuesday I called CF clinic because they had never scheduled my follow-up appointment from my hospital stay and it has been a month. I requested to do PFTs locally and go from there. I got a call on Wed. saying my doc is out of town, but the NP would like to see me in clinic. I don't really like her because she's been rude to me about a couple issues, and I would prefer to wait to see my doctor. They gave me orders to do PFTs locally, so I was mildly content.<br />
<br />
Friday I do my PFTs locally and am not happy with the results... I don't hear anything from clinic. <br />
<br />
Called CF Clinic Monday because I felt horrible - knew it was allergies, wanted an Rx for Prednisone and my doc's opinion. <br />
<br />
Missed a call Tuesday from my NP, but she said she'd call me back. She didn't. I left a msg with the RN - but she NEVER EVER calls me back.<br />
<br />
Wednesday, nothing. I started leftover Prednisone and within a couple hours was feeling better.<br />
<br />
Thursday, nothing. Felt much better, and still have no idea what my doc thinks. Don't really care now.<br />
<br />
Friday (today) - it's going to be a 3 day weekend and I still haven't heard from clinic. I also am going to Europe in about 20 days, and I'd like their opinion on some stuff - like, what the plan should be. I call and leave a passive aggressive message for the RN because she's the bane of my existence. <br />
It may have included "Well, I know you're probably not going to call me back, but it would be AWESOME if you could this time."<br />
<br />
Doin' what I have to do, whether I have support from my docs or not, since 1986. What can I say? I'm still here!Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com1tag:blogger.com,1999:blog-8963729539410388556.post-51907642616801493952014-08-13T10:50:00.000-05:002014-08-13T10:50:00.045-05:00Depression DaveOn Monday, a man I have always loved committed suicide. While I never met him in person, Robin Williams seemed like a friend. I saw him (as characters on TV and in movies) more often than I would see some friends and relatives. He made me laugh - a lot. I remember one depressive episode where Mrs. Doubtfire was the only movie that could make me smile. I included lyrics from "Friend Like Me" in my vows when Dan and I renewed them in June. Robin Williams was always around and could always cheer me up. <div>
<br /></div>
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And now he's gone. He took his own life, and that reminds me that on occasion, I think about taking my life.</div>
<div>
<br /></div>
<div>
Someone else's horrible depression can trigger thoughts of my own depression. Who thought that would be fair? One cancer patient talking to another cancer patient doesn't make either cancer worse. In fact, it's probably almost always cathartic. Now, talking about my depression to people who really understand depression can be very cathartic, but it can also be horrible and, well, depressing. </div>
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<br /></div>
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I am depressed. </div>
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I don't know what to do about it. </div>
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I feel like I'm drowning.</div>
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The last couple months have been a roller coaster for my husband and I. My health has been up and down, and then down and down and down and maybe it's almost coming up again? We've been busy. We've moved, are trying to sell a condo and construction on our new house begins soon. I've been completely crazy at times. The prednisone is mostly to blame for that, and I made some mistakes because of the highs and lows that come with taking prednisone. I made some mistakes that caused a "parting of ways" with some friends, and parting ways with those people completely devastated me. My eye is twitching thinking about it and I can't talk about it. </div>
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I am depressed. I keep thinking it's mainly related to current stress and recent events and that I'll pull through it soon. So I keep waiting. I'm also waiting because I don't know what to do if it doesn't go away. I don't just have depression. I have anxiety that is completely like quicksand - it sucks me in and keeps pulling and I can't get out. The more I try to escape the worse it gets. I can't escape it. I am anxious about almost everything. Right now I am anxious because I'm thinking about depression and anxiety. I am anxious because my depression is bad and I might need more medication, but I'm already on a really high dose of anti-depressant, and I think my brain is too broken to fix. </div>
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I am anxious because my brain is telling me that I will always be depressed and my life will just suck. Even the best times will suck a little because depression will always be there. I might as well give my depression a name - like, Dave - and just accept the fact that Dave lives in my brain and always will. Maybe I'll try to make friends with Dave and Dave will become more of an acquaintance that you pass in the hall and say "Hi" to and then ignore the rest of the time, instead of being that constant nosy upstairs neighbor who is always judging you and making a ton of noise in the middle of the night and ruining everything including your sleep pattern. </div>
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I wish I could move. I wish I could move away and no longer have Dave living upstairs. He follows me everywhere, telling me how horrible I am and how I screw everything up. He lies to me - tells me things I know aren't true and convinces me they might be true. He makes me second guess myself and the people around me who tell me they love me and that things will get better. Dave is the worst. I HATE YOU DAVE! GO AWAY!</div>
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Depression sucks and I'm mad as hell about it. I want to fight it - not just my depression, but help everyone else who is suffering fight, too. And then Depression Dave tells me that I won't succeed and I should just go back to bed... so maybe I'll sew, or play a video game to distract myself for now. Because at least when I'm doing those things I'm not thinking about my depression. I'm at least just numb instead of incredibly sad. </div>
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And that's how I feel about my depression today. </div>
Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com2tag:blogger.com,1999:blog-8963729539410388556.post-21528258712076786102014-07-16T19:05:00.004-05:002014-07-16T19:05:58.776-05:00Wherein I combine all the blogs!I have a separate craft blog and a separate blog for travel photos, but really, I want just one blog. So the plan is to revamp this one a little, and add in travel photos, photos of craft stuff I've made, and photos in general. <br />
<br />
Here is the first photo:<br />
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<a href="http://4.bp.blogspot.com/-qYgbtOkV3Sg/U8cTJXVXP3I/AAAAAAAABXo/w-90KQ4XTag/s1600/Pumpkins+and+Knitting+102.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-qYgbtOkV3Sg/U8cTJXVXP3I/AAAAAAAABXo/w-90KQ4XTag/s1600/Pumpkins+and+Knitting+102.JPG" height="240" width="320" /></a></div>
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It's a simple pair of mittens I knit and then lined with fleece. </div>
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Happy crafting!</div>
<br />Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-80590212052013978272014-07-16T18:33:00.000-05:002014-07-16T18:33:32.770-05:00"How to be a Patient"I'm going to start teaching classes on how to be a patient in the hospital. From my most recent stays here, it is apparent these classes are very, very necessary. Now I could go the traditional route and teach patient advocacy, and things like, "How to fill out a healthcare power of attorney," but I've got some other ideas I want to teach. I want to teach how to make a hospital stay a pleasant experience for everyone involved. I think it might help the staff too - and who doesn't want to help the awesome staff that makes me healthy again?<br />
<br />
My first class would be "Patient Basics." Otherwise known as, "Don't be a pain in the ass."<br />
<br />
First rule: Keep your voice at a level that won't carry to other rooms unless it's a life or death situation. <br />
<br />
Other Important Rules:<br />
~The "silence" button on your IV pump is your friend. Please, call your nurse when your pump beeps and then silence it. There is no need for you to scream and shout down the hall that your thing is beeping.<br />
<br />
~I know being here sucks, I know you're in a ton of pain, you've told your nurse who is currently with you, that you're in a ton of pain. Stop shouting about your pain. <br />
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~Stop SHOUTING. <br />
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~Food does not magically appear. You have to order it and then wait. Don't yell at your nurse because your food didn't arrive 5 minutes after you ordered it. <br />
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~People are nice if you are nice to them, in general. Smile and talk to the staff - they are humans, too. It'll make your stay much better.<br />
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~Say "Please" and "Thank You" to the staff. You can't go wrong with being polite. <br />
<br />
~Learn the difference between your nurse and your nursing aid. Know the difference between what each can and can't do. It'll be really helpful. <br />
<br />
I'm going to offer other classes like "Knowing the difference between your doctors" - a class that completely focuses on the differences between medical students, interns, residents, fellows and attendings. I will teach ways to help them learn how to be good doctors and how to take care of you at the same time. I can also educate basics about the different specialties and when to ask for a consult or a 2nd opinion. <br />
<br />
I think I could also offer a "Fun ways to occupy your time in the hospital" class, full of activities for every level of sickness. Even f you can't even sit up, or if you can just sit in bed, or if you can walk around the hospital, I've got fun activities for you! IV pole riding, Code Blue Bingo, Sharps Basketball, Making art out of medical waste left in your bed - all WONDERFUL activities. <br />
<br />
I could even teach patients how to make edible - possibly even enjoyable - meals out of the stuff that comes up on your tray! <br />
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Think I could make a career out of this?Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com1tag:blogger.com,1999:blog-8963729539410388556.post-14822766187723754342014-07-05T21:29:00.001-05:002014-07-05T21:29:56.572-05:004th of LuckyI thought I was having the WORST Fourth of July weekend EVER. Like, THE. WORST. I'm in the hospital on my favorite holiday and my husband can't be here because he's getting over a virus. My Dad can't visit because he's on call. No visitors. No fireworks. No sparklers. No barbecues. No picnics. No parades. No delicious brats or hot dogs. Not even a decent burger anywhere. No fun at all. Just a whole weekend of me, Netflix and my quilting. <br />
<br />
My husband and my mother-in-law are packing our house for a move, and I want to be there to be involved, which has caused some friction, which has stressed us all out. So not only is my weekend no fun at all, but it's also stressful. <br />
<br />
And lonely - did I mention the gut-wrenching loneliness? Despite the medical students, residents, doctors, nurses, respiratory staff, and various other staff, it's really isolating and lonely in the hospital. I often feel forgotten, too. Sometimes, I just want to be surrounded by the people who understand me best. It can be really overwhelming telling your life story to new person after new person.<br />
<br />
So my weekend was already awful, stressful and full of loneliness. Then I'm doped up on Benadryl which makes me sleepy. I was cranky, grumpy and thirteen other unfriendly dwarfs. My doctor had told me to go to the 9th floor around 9:30 on the 4th so I could see the fireworks. I had been arguing with my husband and feeling sorry for myself so I decided I was in no mood to do anything fun. I had decided there was no way anything - not even fireworks - could make my weekend better. <br />
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At about 9:20 last night I changed my mind. I decided that it was up to me to try and make the best of my terrible, horrible, no good, very bad hospital stay. I put on my shoes, got unhooked from my IV, and wandered towards the 9th floor. I had no clue how to get there, but a very nice resident and medical student let me ride the staff elevator up with them. <br />
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I arrived at a little sitting area with giant windows facing south. To my amazement, we could see more than one fireworks show going off. In all, we could see EIGHT fireworks displays. EIGHT. I knelt on the floor and rested my head on my folded arms on the windowsill. I could see the fireworks and my reflection in the glass. My glasses, my French-braided pigtails, my new pajamas and a little bit of fog on the glass from my hot breath. All good things. I had washed my glasses - something I don't always have energy to do when I'm in the hospital. Also, I had the energy to wash up and braid my hair after my best friend came (a visitor!) and brought me new pjs to wear. And I had enough breath to fog up the window. I had enough breath to get me from my hospital room to the 9th floor lounge without a wheelchair. And now I had eight fireworks displays at once. <br />
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In the glass I saw a tear stream down my cheek. I suddenly felt very foolish. I have so much to be thankful for, and I was wasting time choosing to be grumpy. I was choosing to not appreciate what I have and instead focusing only on the things I couldn't have. <br />
<br />
My heart filled with a sense of love and hope. I sat there and watched the fireworks until all the displays were done. After the last embers fell, I said a silent prayer of thanks and returned to my room. I called my Dan to tell him about my wonderful experience and to apologize. I wanted to thank him and his mom for doing all the work I don't have the energy or health to do. And I just wanted to hear his voice. Dan tucked me in from afar, meaning he stayed on the phone with me while I got comfy and until I was almost asleep. And while that's not as good as being in our bed together, it's good enough. It's the best I've got available and I am grateful for it. <br />
<br />
I'm extremely grateful for my best friend Sarah and her husband for going to Kohl's yesterday to get me more pjs and things Dan was planning on bringing me this weekend, but couldn't. It was so wonderful to change into clean pjs. It was wonderful to spend some time chatting with people who know me well and who were also in the same room as me. <br />
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I'm thankful for the strangers who have helped me in the cafeteria when I have been trying to juggle my IV pole, my wristlet, my phone, and a tray of food. Their kindness means so much. It restores my faith in humanity a little. <br />
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I'm thankful I'm getting better. My lung functions were up on Thursday and hopefully they'll be even better on Monday when I test again. I'm thankful for the energy to quilt while I'm here and the attention span to watch Netflix. Sometimes I'm so sick all I can do is lay there. <br />
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I'm thankful and lucky. <br />
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<br />Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0tag:blogger.com,1999:blog-8963729539410388556.post-39975019628690663652014-06-25T10:33:00.000-05:002014-06-27T10:34:11.897-05:00Three Years Ago Today<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">Three years ago today, at right about noon I pulled my car into
the parking lot at the Great Dane. Standing on the corner outside the
restaurant was a boyish looking man wearing an over-sized, gray, short-sleeved,
dress shirt. He also wore a nervous expression that told me he was
probably my date. I then confirmed what I was thinking because I
recognized him from his online profile. I recognized him first by his
shirt - the same, over-sized, gray, short-sleeved dress shirt he was wearing
was also the one he wore in his profile picture. It did make me wonder
whether or not he owned any other apparel that was appropriate for going out in
public. As I parked my car, I grabbed my purse and the box containing my
copy of Scrabble, and I again looked at my date. He seemed really nice
and pretty confident over email, but I could tell from 100 yards away that he
was so nervous he thought he might die. That was when I decided to smile.
I smiled all the way from my car to where he stood, and it was a good
decision because he would later tell me my smile was what he noticed first
about me. <o:p></o:p></span></div>
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<span style="font-size: 13.5pt;">He recognized me because I was awkwardly
carrying a copy of Scrabble. We had decided over email that we would play
Scrabble at the Great Dane for our first date. A silly, nerdy thing to do
seemed appropriate.<span class="apple-converted-space"> Bored games and
nerdy things were the reason I looked at his profile in the first place. I walked toward him still, and when I
approached he stuck out his hand to shake mine, and I laughed at him and said, “Oh,
come on! Give me a hug!” <o:p></o:p></span></span></div>
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<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">I remember almost every detail of that
first date – what he wore, what I wore.
We ate Idaho nachos (which are sadly no longer on the menu at the Dane),
and I had the tomato mushroom soup and he had a cup of peanut stew. While we ate we talked. I first told him about my health, which for
me was the first test for any guy. It
was my “hold onto your hats” move. As I
pricked my finger to test my blood sugar and then gave myself a shot of
insulin, my date told me about his cousin and her son and their mysterious
health problems. I remember him saying, “I
think you’d really like her. She’s
great!” <o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">We played Scrabble and he crushed me. I was pretty sure this was going to happen
because I’ve never been particularly good at Scrabble. During the game we talked more. He told me about the condo he just bought
(bonus points for being a grown-up, a few minor points deducted for making it a
tricked out bachelor pad), and the work he does “at this little medical
software company.” I, laughed and listed
my friends who also worked at Epic, and not shockingly we both knew one
person. <o:p></o:p></span></span></div>
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<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">My date and I talked about our families –
my brother, his sister, and our parents.
He impressed me by telling me how much he admires and looks up to his
little sister and how they talk once a week – usually on Sunday. I remember thinking how thrilled I’d be if my
brother called me once a week. <o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">We finished lunch at the Dane, and I
offered to split the bill with him and he refused to let me pay. After lunch and Scrabble we were crossing the
street and I thought, “5’ 7” isn’t such a bad height. I think it’s completely fine that we’re
exactly the same height.” I suggested we
go for cupcakes, and even though he said he was too full, my date said he didn’t
mind if I got a cupcake. I remember
feeling really happy and a little bit silly.
I remember being able to be completely myself. <o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">We walked past the movie theater and my
date saw “Cars 2” was playing. He asked
me if I’d like to join him because he’d been dying to see it. I said sure, but when we went in we realized
we had missed the 2pm showing by 10 minutes.
I remember the sad expression of disappointment on his face and the way
it innocently changed to hope as he cautiously asked me, “would you want to
hang out until the 4:30 showing?” I said, “Sure why not.” I had to check and make sure it would be
okay with my Dad, since he was in town and not expecting my date to take all
day –especially since it was a first date.
My Dad had no problem with me staying out longer, so now the only issue
was what do we do for 2 hours? <o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">I got a broad smile on my face and said, “Let’s
go to the toy store!” He looked a little puzzled, but had nothing better to do
so he followed. We looked at the toy
dinosaurs and commented how our respective nephews would love them. I’m pretty sure I took two and proceeded to
make them duke it out. T Rex probably
won. We wandered through Playmobile
isles and over to the board games. We
talked about which board games we each owned, and oddly we owned several of the
same games. Blokus and Carcassone, plus
a couple others. <o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">We tired of loitering at the toy store, we
wandered through the mall and the grocery store, and finally we settled at a
table outside the grocery store for the remainder of the time before the
movie. The more time I spent with him,
the more I liked him. We were able to
talk about anything and everything and I really enjoyed talking to him. All the nerves I had seen as he stood on the
corner a few hours earlier had vanished and I sat chatting with someone I felt
I had known for a very long time. <o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">We saw the movie and I don’t remember most
of it because I spent most of the movie trying to get my date to hold my
hand. At the really funny parts I would
look over at him to share a laugh, but he was glued to the screen, which made
me laugh harder. When the movie ended he
said he would walk me to my car. We
walked the block almost completely without talking. I could tell once again my date was extremely
nervous. He fidgeted with his hands as
we exchanged the required “I had a really good time,” and “we should do this
again.” I had been on a lot of first
dates, but this was one of the very few times that I actually meant that I had
a great time and I really wanted to see him again. <o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">We exchanged what I thought was the world’s
most awkward hug, and as I got into my car I said, “Bye, Dan! I’ll talk to you
soon!” I had a really good, happy
feeling. I know now that feeling was the
beginning of the best three years of my life.
<o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span class="apple-converted-space"><span style="font-size: 13.5pt;">I have loved every day since I met
Dan. I love how our relationship started
slow and awkward and after a month we became inseparable. I love that we knew very early on that we
were meant to be together. I love all
the good times we’ve had, and even the bad ones. I love the support and love Dan gives me and
how he takes care of me when I’m sick. I
love that we never stop laughing. I love
our love and I love you, Dan. <o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<span style="font-size: 13.5pt;">Happy three years since our first
date!</span><span style="font-size: 13.5pt;"> </span><span style="font-size: 13.5pt;"><3 Carla</span><br />
<br />
<br />Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com1tag:blogger.com,1999:blog-8963729539410388556.post-51889171599493362692014-03-23T20:40:00.001-05:002014-03-23T20:40:03.199-05:00Reason I WriteTonight I remembered the reason I write this blog. <div><br></div><div>I got an email from the granddaughter of a former coworker of my father. She told me that I am amazing and strong. She said she'd like to talk to someone who also has health problems and knows what it's like. </div><div><br></div><div>That's why I write here: to help people who are going through hard things. And I need to get back into writing despite the 10,000 wedding projects I'm currently working on. </div>Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com1tag:blogger.com,1999:blog-8963729539410388556.post-11990799401195254482014-03-08T10:57:00.001-06:002014-03-08T10:57:27.301-06:00Forever DancingYesterday I was on my way home from clinic in Milwaukee. I was feeling sad about my lung functions and something that happened to me on Thursday. Thursday I went to get my blood drawn, and at the lab there was a woman who looked so much like my friend Lauren it was scary. Except for the fact that she was pregnant (and Lauren and I used to compare our distended abdomens to see who looked more pregnant), I could have sworn it was Lauren. I almost said something to the woman, except Lauren passed away in 2011 and "Hey! You look exactly like my friend, but she's dead." is not the most tactful thing to say in public. <br />
I was sure that seeing Lauren in that woman was a sign - a sign my lung functions would be up and I would be back where I want to be. But that didn't happen, and I was sad. I was sad for myself and sad because I miss Lauren. I was frustrated that she hadn't come through for me and given me the boost I thought I needed. <br />
<br />
And then my iPod did something strange. Out of 2,000+ songs on my phone, just as I was thinking about Lauren, "MmmmBop" started to play. Hanson was her favorite band and I will always think of her when "MmmmBop" plays. I knew it meant she is still with me, and that maybe the lung functions not being where I want them to be is a push to work even harder. I thought I was doing as much as possible, but maybe I'm not. Maybe I can push myself a little more and get my lungs back where they should be. <br />
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After "MmmmBop" my iPod played "Dance in the Graveyards" by Delta Rae. It's a song and band my friend Kyra turned me on to, and I've heard it many times, but yesterday it just clicked. As I drove I put it on repeat and sang aloud and cried and eventually was washed over with a sense of peace and calm. I know I can win this. I know I can fight. I have to fight for all my angels no longer with us and all my angels on this Earth. <br />
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The following are the lyrics to "Dance in the Graveyards"<br />
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<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif; font-size: x-small;"><span style="background-color: magenta; line-height: 17.999799728393555px;">"Dance in the Graveyards"</span></span><br />
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<span style="background-color: magenta;"><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">When I die</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">I don’t want to rest in peace</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">I want to dance in joy</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">I want to dance in the graveyards, the graveyards</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">And while I’m alive</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">I don’t want to be alone</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">Mourning the ones who came before</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">I want to dance with them some more</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">Let’s dance in the graveyards</span></span><br />
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<span style="background-color: magenta;"><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">Oh my love, don’t cry when I’m gone</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">I will lift you up, the air in your lungs</span><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;" /><span style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 17.999799728393555px;">And when you reach for me, we’ll dance in the darkness</span></span><br />
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And this song has made me want to throw a party. I want to dance and invite all my angels to come along. I can't wait until it gets warmer and I can do just that. Carlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.com0