The story of Mistie Gillespie & her medical adventures:
We are so thrilled to present to you, Mistie Gillespie. She is such a great example of pure strength and determination. The Cupcake Charity couldn't be happier to be helping this amazing family. All of the proceeds from the 5K Cake Walk & Run will go directly towards medical expenses for Mistie's ongoing medical treatments.
We hope that you will join us for a SUPER, DUPER,FUN night on August 9th, 2013 for our 5K Cake Walk & Run & Family Fun Night.
Some of you may not know what has been happening in our little corner of heaven for the past year and a half. Goodness. It's a story and a half, so I am going to try and condense.
A few details:
ONE sinus surgery
THREE broken ribs
FIFTEEN months of coughing
FIVE trips to the ER
TWO trips to the Instacare
SEVEN CT scans
ONE MRI
ONE chest tumor biopsy
ONE bronchoscopy
FOURTEEN doctors
FIFTY feet of oxygen tubing at home
ONE nebulizer
ONE go-with-me-everywhere Oxygen monitor
ONE PICC line (that took TWO tries)
TWO lung biopsies
TEN different antibiotics
ONE found medicine allergy
EIGHT nights spent in the hospital in Provo
FIVE nights spent in the hospital at IMC
THOUSANDS of tissues and cough drops
ONE Thymoma, staged at 2A - that at pathology had 'broken the capsule'
LOTS of rounds of steroids
ONE Sternotomy
TWO Chest Tubes
ONE swallow study under x-ray
ONE occupational therapist
ONE physical therapist
ONE speech therapist
THREE diagnoses (Chronic Sinusitis, Bronchiectesis, Myasthenia Gravis)
TWO boys who have been very patient
ONE husband who has done everything possible for this family
ONE mom who is ready to MOVE FORWARD!
INFINITE blessings
Over the past couple of months, my respiratory problems were increasing. I had to go back on 24/7 oxygen support. About 3 weeks ago, other problems started to manifest. First I started to lose function in my left hand. It wasn't numb - it just wouldn't work right. A few days later, my left eye started drooping. After that, my right side smile drooped. Then, my left arm was losing strength and function. I was having a harder time breathing and coughing. I was having a hard time chewing, and my mouth in general wouldn't work right. Again, it wasn't numb - it just wouldn't work right.
We FINALLY found doctors who were willing to figure it out! I was diagnosed with Myasthenia Gravis. I stayed 5 nights in the hospital, receiving IVIG treatments. They take about six hours each - only one a day. After the first one, my arm and my mouth were dramatically better. I'm a little stronger every day, now that I know what has been wrong. All of the antibiotics over the past year wouldn't have made me better - some of them actually exacerbating the problem. All of the cultures and biopsies and bronchoscopy results... never showed a measurable bacterial, viral or fungal infection. But, the RIGHT medicines are working. The frustrating part of this story is ... Myastenia Gravis and the Thymoma tumor I had removed from my chest really go hand-in-hand. Having the thymoma removed isn't a 'cure' for the MG, but is often used as a diagnostic point. Until I could nearly no longer function, did someone look at MG.
It's going to be a long road. We have a lot to learn. The physical and occupational therapists have helped me to understand how to best live the best life. There will be times of remission. Hooray! There will be times when those darn muscles and my brain just won't communicate. They warn of watching and resting when "you're tired while eating" and "when your head is too heavy to hold up" ... you know, hard core stuff!
As a family, we really want to say THANK YOU to so many who have helped our little family. So many have given time, service, friendship, love and prayers. We are So blessed to have amazing family, friends, neighbors, ward family members, and now the right doctors.
We hope that you will join us for a SUPER, DUPER,FUN night on August 9th, 2013 for our 5K Cake Walk & Run & Family Fun Night.
Some of you may not know what has been happening in our little corner of heaven for the past year and a half. Goodness. It's a story and a half, so I am going to try and condense.
A few details:
ONE sinus surgery
THREE broken ribs
FIFTEEN months of coughing
FIVE trips to the ER
TWO trips to the Instacare
SEVEN CT scans
ONE MRI
ONE chest tumor biopsy
ONE bronchoscopy
FOURTEEN doctors
FIFTY feet of oxygen tubing at home
ONE nebulizer
ONE go-with-me-everywhere Oxygen monitor
ONE PICC line (that took TWO tries)
TWO lung biopsies
TEN different antibiotics
ONE found medicine allergy
EIGHT nights spent in the hospital in Provo
FIVE nights spent in the hospital at IMC
THOUSANDS of tissues and cough drops
ONE Thymoma, staged at 2A - that at pathology had 'broken the capsule'
LOTS of rounds of steroids
ONE Sternotomy
TWO Chest Tubes
ONE swallow study under x-ray
ONE occupational therapist
ONE physical therapist
ONE speech therapist
THREE diagnoses (Chronic Sinusitis, Bronchiectesis, Myasthenia Gravis)
TWO boys who have been very patient
ONE husband who has done everything possible for this family
ONE mom who is ready to MOVE FORWARD!
INFINITE blessings
Over the past couple of months, my respiratory problems were increasing. I had to go back on 24/7 oxygen support. About 3 weeks ago, other problems started to manifest. First I started to lose function in my left hand. It wasn't numb - it just wouldn't work right. A few days later, my left eye started drooping. After that, my right side smile drooped. Then, my left arm was losing strength and function. I was having a harder time breathing and coughing. I was having a hard time chewing, and my mouth in general wouldn't work right. Again, it wasn't numb - it just wouldn't work right.
We FINALLY found doctors who were willing to figure it out! I was diagnosed with Myasthenia Gravis. I stayed 5 nights in the hospital, receiving IVIG treatments. They take about six hours each - only one a day. After the first one, my arm and my mouth were dramatically better. I'm a little stronger every day, now that I know what has been wrong. All of the antibiotics over the past year wouldn't have made me better - some of them actually exacerbating the problem. All of the cultures and biopsies and bronchoscopy results... never showed a measurable bacterial, viral or fungal infection. But, the RIGHT medicines are working. The frustrating part of this story is ... Myastenia Gravis and the Thymoma tumor I had removed from my chest really go hand-in-hand. Having the thymoma removed isn't a 'cure' for the MG, but is often used as a diagnostic point. Until I could nearly no longer function, did someone look at MG.
It's going to be a long road. We have a lot to learn. The physical and occupational therapists have helped me to understand how to best live the best life. There will be times of remission. Hooray! There will be times when those darn muscles and my brain just won't communicate. They warn of watching and resting when "you're tired while eating" and "when your head is too heavy to hold up" ... you know, hard core stuff!
As a family, we really want to say THANK YOU to so many who have helped our little family. So many have given time, service, friendship, love and prayers. We are So blessed to have amazing family, friends, neighbors, ward family members, and now the right doctors.
This is the CT of the Tumor Mistie had removed in November 2012