Dear Sherri,

I am so sorry that your father has stage 4 cancer and your sister died
recently. Plus Miranda's headaches and your health issues, you need a
break! Thanks for the baby congratulations- all is well so far, I am
19 weeks pregnant now, and we are not yet sure what it is as far as
gender, but the ultrasound looked good for a healthy baby otherwise.
No obvious boy parts seen, but they did not want to call it the other
way yet, so we will wait and see! I am sure to have another
ultrasound later on, since they are keeping me in the high risk group
since I have had pre-term labor with our boys.

Nate will be going to the NIH July 8-12th with Seth for the
appointments, and I got the schedule from Nikki a few weeks ago (big
surprise to get it so early). So I have been able to go over it and
make the many needed corrections and confirm things, which is good.
Make her do this for you too!

I wonder if the periods and puberty with Miranda are adding to the
headaches and flares? Just a thought. I have seen girls with seizure
disorders come into the hospital with breakthrough seizures every time
they got their first few periods, and had a ton of trouble until the
body sorted things out, which was so hard on the girls! Can you
imagine getting grand mal seizures each time your period came, on top
of that alone as a teen? I would look at the NOMID diaries to see if
there are correlations with PMS and stuff, just to rule it out.
Perhaps if there is a correlation, you could go up on the kineret for
a few days with it to see if it helps or something.

I so wish we were closer by to give some help to you! I do not know
how you are able to cope with it all, and I hope the kids are doing
well. How was the musical? Is your son going to try out for American
Idol this year? (That would be so cool, but another project to deal
with which may not be needed now). Seth is in another opera this
month, "Don Giovanni" with the SF opera, and he is one of 4 kids in
the wedding scene. He is having fun as usual with it. The music is
so beautiful, but Don Giovanni is a real villian! both boys still are
singing a lot with the Sf Boys Chorus, and our oldest will promote to
the top level next year, and will then get a chance to try out for
singing roles for boys in the Opera, which he is excited about
already! Ethan does solo parts now for the chorus at his level, and
has a good voice, so we shall see. Seth sings well too, but is not
old enough for such roles. It is nice that they enjoy this together,
along with other things too.

Our prayers will be with you all, and I hope that things settle down
soon. With all the stress you are under, no wonder your body is
showing problems with cholesterol and triglycerides! They go up with
stress, even if you are eating well. Try using a lot of olive or
grapeseed oil in cooking, since these help a lot. The grapeseed oil
really is proven to benefit the heart and boost LDL. I use it a lot
now, since Seth's LDl was low for awhile and they were concerned about
triglycerides with him last year. Within a few months of using it or
olive oil for all our cooking, his levels were good. It is more
pricy, but works! The best would be if you could go to a tropical
place for a vacation, eat lots of fruit and veggies, sleep in, get a
massage, sit on the beach, swim and relax, and repeat for a few weeks!
It doesn't sound like that will happen soon, so find some time for
yourself whenever you can. maybe someday when the NOMID Alliance gets
more awareness done, and has more resources,we can get something like
a convention for the NOMID families in Florida or something. That is a
ways off ,and a lot of fundraising to do, but it would be fun to get
together and relax!

Good luck, and I hope things get better.

Karen Durrant



--- In nomidsyndrome@yahoogroups.com, "sherrip12s" <Sherrip12s@...> wrote:
>
> Hello to everyone!! I am so sorry it has taken me so long to write!
> Between work and kids, life is flying right by!
> Anyhow, life has been crazy, my sister died on good friday, she was
> only 23. Now, my dad is stage 4 cancer and we called hospice in 2
> weeks ago. So I have not been home much.
> Miranda started her period!! And she handled it better than I did!
> She didn't like it, but I just told her it was normal and all girls
> get it. She called it a bandaid and was waiting for the boo-boo to
> get better! It was actually cute. Although the morning routines and
> nightly routines were quite different! For me anyways!
> But we managed.
> Nikki called me too, she wanted to move me to the end of September,
> I told her no, that wouldn't work. Miranda has been having "break
> through" with symptoms of fevers and pain. A lot of headaches too.
> Her eyes have been acting up too. So Nikki moved us to july 29th. We
> will be there for 5 days.
> Other than this, life is great!
> Today is my birthday, and I just found out, I am a walking heart
> attack! My cholesteral and triglicerides and LDl are high! So,
> change of life coming for me!
> Karen, I am sooooooooo happy for you! I didn't even know you were
> expecting until 20 minutes ago! How exciting!! When is the due date?
> Please let me know how your doing!
> I have to get to bed, long day at work tomorrow. Hope everyone is
> doing well, I will have to get on tomorrow and read the rest of the
> emails.
> Take care and lots of love to all!!
> Sherri
>