Mark Your Calendars 

Okay, I need prayers now more than ever…as I will be talking at the state Capitol on Feb 29th for Rare Disease Day!! Haha, I bet I scared ya there for a minute but really, pray for me to say the right things and to be at peace while doing so.

Sharon has been doing so much for this event that the least I can do is talk for five minutes. My health has not been great recently but I am trying to do whatever I can to help her out!

But, I am also encouraging all of you, especially those who are close by the Des Moines area, to come to our event! It is from 1pm to 2:30pm and there will be snacks too😉 Please consider coming to support us and our cause!

This is from Sharon Ponce‎ Iowa Rare Disease Day Committee and hope the link works…

Hey everyone,

If you plan on attending the State House Event please go to, go to the “Events” drop down screen, click “event locations” and scroll down to Iowa. Fill out the form to attend and submit it. I put the link below, hopefully it will take you there. Thank you!

And as far as my health goes, no word yet from any of my doctors which again is fine as I have been dealing with a major sinus infection. Sunday I began to have extreme head pain while sitting in church and after it not letting up, I went to the walk in clinic. Doctor felt my sinuses looked clear so I was sent home to take over the counter medications. Waste of my time but Asher sure enjoyed the trip… 

And then Monday hit and I had the worst head pain I have ever experienced…and remember my SVC was completely blocked at one time😳 It was to the point where I avoided any and all type of movement for a few hours until I was able to function again in the late afternoon. But, I was back in bed early with the kids and okay…I am laughing at what I am about to share!!

Many of you know I usually sleep on the couch to elevate my head in order to reduce pain and pressure in my head and chest. Well lately I’ve been sleeping in our bed with pillows to prop me up…Leah’s huge giraffe pillow to be exact. And, I’ve been sleeping with compression socks to help the circulation in my legs…haha, I know, I’m a catch right?!

Today Tim informs me that he walked in to our bedroom last night, the smell of insulin in the air because my pump was unhooked and there I was spread across the bed sleeping high in the air on all of my pillows, including Leah’s huge giraffe pillow that takes up half the bed…and my legs with the compression socks were sticking out from beneath the blanket! 

Oh my gosh I about died when he told me that he just stared at me and seriously thought “wow, seven years of this!”

While it’s hard to let Tim see me at my sickest or help me after my procedures or bandaging me up, this is different and I can’t help but laugh at the site I must have been!! Hey, this is the reality of my illness and with all of my dreary news lately, I figured this might lighten things up😜 But yes Tim…you are one lucky man!!🤓🤓🤓

Haha, anyway another bad morning of head pain today was more than enough so I went back to the doctor who finally gave me some antibiotics to hopefully clear up the issue! And once again Asher was stuck coming along with mom to yet another doctor appointment but he did great and I am so thankful for cars and tractors😍 

So by the time I hear back from Iowa City, I should be over this sinus junk!

Today I also got the chance to go listen to Leah read at school for her reading celebration! All night and all this morning she was reminding me what time to come to her classroom so I am extremely grateful that I was feeling better by the time I had to be there…not that I would have missed it anyway!

So once again…I would love to meet all of my followers so don’t forget to mark your calendars and come support us in Des Moines on February 29th for Rare Disease Day.

Sharon explains the details in the following paragraphs…

 Rare Disease Day Awareness event on Monday, February 29, 2016 from 1 p.m. to 2:30 p.m. in the Legislative Dining Room #15 at the Iowa State Capital, 1007 E Grand Ave, Des Moines, IA 50319. This will be an excellent opportunity for you to learn about Rare Disease Day and Rare Diseases from the members of our community – your constituents – about how rare diseases affect people in the great state of Iowa.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed.

See you all then!!

2 thoughts on “Mark Your Calendars 

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