We
have another guest blogger: my mom (AKA: nurse, caretaker, confidant, friend, and supporter--especially when I'm sick). Other than my hubby, she's the one I want around the most when I'm sick. You just WANT your mom, right? She anticipates what I need, asks good questions when I can't think clearly, and advocates for me like no one else (talk about mama bear instincts). This lady's got 'em! And I gotta save, I love it, and am sooooo thankful for all that she's done to help me...especially when I'm NOT the easiest patient in the world! Love you, Mom!
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| Love her!!! |
Even though I’m not a mom, I have heard her
and countless other mothers say that it is so extremely hard to see their
kiddos sick, so I asked her to share her thoughts and memories from the past
few years to give you a window into her world (many of which I have either blocked out or do not remember because they were just too traumatic).
This was even fun (if that's possible--maybe "enlightening" would be a better word) for me to read, and I really learned some interesting things
about HER and ME from reading this from her perspective. Without further ado….
Hello all, Kristin’s
mom here!
Reading
her blog over the last few weeks certainly caused some vivid memories to stir
within me, ones I don’t often recall but haven’t forgotten either. I told her a few weeks ago that perhaps I
should write a blog from a mom’s perspective, and of course, she was eager for
me to write one, but writing doesn’t come as easily to me as it does her, but
here goes (Kristin here again: she's a GREAT writer...don't let her fool you for a second!!!)!! It makes the most sense for
us to plot out the story geographically and along a timeline...
New
York City--2005:
While
she lived in New York, it was very difficult to assess her health just through
phone conversations with her. We moms
can look into our kids’ eyes and tell whether they’re sick or not, and I
couldn’t do that from a thousand miles away.
It was frustrating to say the least.
We had daily contact with her by phone, hoping that every day she would
feel somewhat better!! When we got the
phone call that they wanted her to be hospitalized for a blood transfusion, it
was clear to her and to us that we needed to bring her home!! When your kids need you, God gives you
amazing courage and strength to do what you need to do!! Hopping on a plane to New York BY MYSELF is not in my comfort zone!! But I was like a
mama bear needing to rescue her cub, you better not get in my way, I was on a
mission!! God provided amazing friends
who lined up the flights for us in less than 24 hours, and both of us were
never so glad to be on our way home the next day!! We had wheelchairs lined up at LaGuardia and
also O’Hare, as she was so tired and weak, I knew she could not walk on her
own!! We didn’t talk much about how sick
she was, as we were fearful they might not let us on the plane!! I’ll never forget trying to find a bagel for
her at OHare airport, while we waited for both the weather to clear and a plane
to be replaced. I ran all over the
place, and was so fearful I’d never find my way back to her, where she was
lying on the floor resting and trying to watch our stuff!!
Back
in Hampton, Iowa, where we were living at the time:
We
saw our doctor in small town Iowa and they agreed she needed a blood
transfusion (a normal blood count is usually around 11 or 12, when it gets down
to 9, they do a transfusion, and hers was already at 7 by the time we got to
our doctor). She was in the process of
being admitted for the transfusion when her doctor came flying in the room and
blurted out, “You need to go to either Iowa City, or Mayo Clinic. Where do you want to go??” We knew nothing of Mayo at the time, and had
spent much time at Iowa City Hospitals, where we eventually, after several open
heart surgeries, lost our son Matthew, 2 years before Kristin was born. Since we knew that hospital, we felt like
that was the place to go!!
To
Iowa City we go:
We
were thankful to be at the U of Iowa Hospitals, but it was also unsettling to
be at such a good hospital and watch them try to figure out what was going on
with her medically. The fevers, diarrhea,
low red blood count, weakness were all a confusing set of symptoms, and
therefore it was difficult for them to figure out what all the issues
were!! It was exhausting for her to
answer all the questions of the different teams of doctors who came in, and she
would often turn to me and say, “Mom you answer them, I’m too tired.” Because of HIPPA laws, they would at times,
ask us to leave the room to ask her questions as well. Her first night there, she ran a high fever
again (104, as I recall), and they immediately packed her in ice to bring the
fever down. By now, her RBC count is down
to 5, and as the nurses listened to her heart and lungs, breathing was very
labored and her heartbeat was very irregular.
We still didn’t have a plan from the doctors yet. I remember staying in her room that night,
and pleading with God not to take another one of my children from me!! Late in the evening they decided to go ahead
with the blood transfusion so they got her all set up, prepared us for all the
monitoring that would be done within the first hour, and began
transfusing. Within the first 10
minutes, several doctors came running in her room and yelled STOP!! We don’t
think this is the right protocol!! We
were stunned!! So they began to explain
to us the crazy things that were going on with her blood (you can click here for more info on that), and instead, stopped the transfusion and gave her several steroid shots. We now know
they (the steroid shots) were the reason her GI issues got better, and we also know she
was too sick to do a colonoscopy at the time, or we would have probably then
discovered the onset of her ulcerative colitis.
Needless to say, we would find this all out years later, down the
road.
Going
home (back to Hampton):
After
4 or 5 days in the hospital, she went home on folic acid and iron, to build her
blood back up, since transfusions were not possible. She was not allowed to finish out that
semester in school, so we got to keep her at home for that semester!! What a blessing to have that bonus time with
her!! I was also blessed to have a job
in which they released me for two weeks, so stay home and care for her, as she
was so weak, she couldn’t even fix her own meals, shower on her own, or do
simple things like get ready (blow drying her hair, putting on make up, etc)!! Her bedroom was in the basement, but she
lived on the main floor of the house, while regaining her strength, so she
didn’t have to do the stairs!! She was
not allowed to be outside in the cold (it’s now Oct-November in IOWA), so we
got very creative in our efforts to keep her entertained (movies, puzzles,
books, cards, etc). As Kristin wrote in
her blog, it was also a wonderful time of getting to know our future
son-in-law, as Matt would come visit on the weekends. We will always cherish that special time together
that God allowed us to share!!
Fast-forward
to the End of 2010, when we are now living in Arkansas:
Moving
ahead to the process of getting diagnosed with UC: it was an extremely frustrating time. We were thankful we lived here in Arkansas at
the time, as we were able to go with Kristin to some of her doctor’s appointments. Again, she was in a flare up (we didn’t know
it then, because her UC hadn’t been diagnosed) for a lot of weeks, and trying
to teach at the same time, and obviously not feeling well, but pushing through. The wheels of the medical system can move
very slowly when you’re sick and that was the case for her. From the time she began seeking medical help,
until she was diagnosed, was almost 6 weeks, which is a long time to keep
working when you don’t feel well. As we
look back on that process, we are so grateful to God for the doctor he provided
that got her referred to a GI doctor, who recognized how sick she was and even
agreed to do a colonoscopy on Christmas Eve day!! God bless you, Dr. Stagg!!
She
had been so sick again for so many weeks with bloody diarrhea, that we were
finally grateful for a diagnosis, even though we didn’t fully understand it
once we knew it was ulcerative colitis.
We all had much to learn, and still do, about this disease. It’s hard to watch your kids not feel well,
no matter the cause, but I think none of us know how awful she feels when she’s
in a flare up—stomach rumbling, diarrhea, physical pain in your belly, tired,
weak, even feverish at times, due to the ulcers in the colon. It’s then that I wish I had the disease
instead of her!!
Where
we're at now:
As
I’ve watched her go through these cycles of remission, flare ups, stool
samples, prednisone, remission, etc. its difficult to watch her go through the
physical and emotional pain that goes with the disease. When she’s having a flare up and waiting for
her doctor to prescribe the right medicine (it’s a lengthy process of calling
the doctor, leaving a message with his nurse, getting her call back, orders to
collect stool samples, getting materials for stool samples, turning them in, waiting
for results so the doctor knows what to prescribe), it feels like an eternity
of watching her feel sick, become discouraged, be sick of being sick and be so
ready to take the prednisone, because she knows it will take away the
symptoms. As soon as she takes the
prednisone, then everything changes-her GI issues correct quickly on the
medicine, but what an emotional toll this medicine takes on her—severe mood
swings, irritability, endless energy that allows her to keep going like the
Energizer bunny, a mind that never shuts down, lack of sleep, etc. Sometimes it’s like walking on egg shells
around her, never knowing what mood she would be in, and what she would feel
like from day to day. It also led to
other medications to deal with the side effects of the prednisone, so to her
I’m sure it feels like a vicious cycle, and when will I ever feel “well”.
I have to say, I am so proud of the hard
decisions she and Matt have made recently.
In light of the frequency of her flare ups, her doctor suggested it was
time to start this new medication, Remicade.
It has the potential to heal the lining of her colon and keep her in
remission!! YAY!! Sounds like a miracle drug!! Stress really seems to be a trigger for
Kristin’s UC, so as Matt and Kristin have looked at their lives, making the
hard decision to quit teaching, work less and remove the stress to allow this
medication to do it’s healing work, I am sooo proud of them. Kristin loved teaching kids and I think she is
a great teacher (remember, I’m her mom so probably pretty biased), so this
truly was the death of a dream. It’s not
easy to give up something you love so much, but they had to think about her
long term health, and it truly was the right decision!!
Again,
we have seen God’s hand of provision for them in this entire process, God
reassuring them that he would be their provider. A number of times they were given financial
gifts from generous friends and family, her teaching staff at school, anonymous
individuals, and on and on. Her new part
time job was completely crafted by God and seems to be just the right fit for
her, part time work with flexibility for doctor’s appointments and days when
she’s not feeling well (hopefully not many of those)!!
We
know that God can use every situation in our lives for His good and His
glory!! We’ve already seen God do that,
and we look forward to all that God has in store for Matt and Kristin in the
future!!
_____________________________
Kristin again:
Day 2 of Thankfulness in November-
Thankful for the privilege to vote and for all the people that have defended and given their lives for our freedom! Extremely grateful!
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| Voting early!! |
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