So my dear friend, who is like a sister to me, is trying to surprise me today. I love that she wants to do something nice for me, I really, really do. There's just one thing she won't tell me what we are supposed to be doing and I HATE surprises. My experiences have reinforced over and over again that my surprises are rarely, if ever, good ones; therefore, I hate them. They make me uneasy and anxious.
Surprise example number 1. R tries to throw me a surprise party for my birthday. F ends up sick and hospitalized with pneumonia. Surprise example number two plan a vacation and your husband gets pink slipped at his county job (no vacation!). My list could go on and on.
She wants me to dress comfortably and bring comfortable shoes. You know... this is defined differently by each of us. Not only that I'm going to be gone ALL day on my only Saturday that I had to spend most of the day at home. Part of the problem is I'm rarely home. I can't get my head above water on laundry, housework, blogging, etc. because I'm only home for a few hours and I can't get anything done that requires a good chunk of time.
What I'd like today is a number of things. Wash my dog so I can cut his hair tomorrow (standard poodle). Go to the library. Get in a 10 minute fat burning workout. Do laundry. Change the sheets. Get my math worksheet done. All those things that have just piled up. Maybe even watch a movie with the family before I go get my hair done.
I need more hours in my day!
Saturday, November 3, 2012
Thursday, November 1, 2012
Just trying to keep my head above water...
I know I keep abandoning this blog. I don't mean to. Thank you, Lee, for reminding me I have one and for your kind words. Your words were honestly an answered prayer that day.
I'd like to catch everyone up on all that's going on, but honestly I'm simply just overwhelmed by my life. I know many people in my life think I'm strong and I can handle everything, but I've kind of had my limit recently. I'm not super mom. My marriage is crumbling and I'm coming up on the 15th anniversary of Cienna's terminal diagnosis, her 18th birthday, and the 15th anniversary of her death are around the corner. Right now I'm just telling myself "fake it until you make it" when really I'd like to curl up in a ball in my warm bed and just cry. I'm also wondering what the hell I was thinking trying to train for a marathon that is December 2. I've got a 20 mile training run on my to do list for Monday and I barely have the energy to function. Really... what WAS I thinking?
I'm just praying for God to ease my sad heart and help me through this challenging time. Grief sucks! I miss my daughter and all the memories and milestones we should have had together.
Just trying to survive the day.
F is doing great. He registered to vote and is super excited about the election. I'll try to write about that later. I couldn't be more proud of him.
I'd like to catch everyone up on all that's going on, but honestly I'm simply just overwhelmed by my life. I know many people in my life think I'm strong and I can handle everything, but I've kind of had my limit recently. I'm not super mom. My marriage is crumbling and I'm coming up on the 15th anniversary of Cienna's terminal diagnosis, her 18th birthday, and the 15th anniversary of her death are around the corner. Right now I'm just telling myself "fake it until you make it" when really I'd like to curl up in a ball in my warm bed and just cry. I'm also wondering what the hell I was thinking trying to train for a marathon that is December 2. I've got a 20 mile training run on my to do list for Monday and I barely have the energy to function. Really... what WAS I thinking?
I'm just praying for God to ease my sad heart and help me through this challenging time. Grief sucks! I miss my daughter and all the memories and milestones we should have had together.
Just trying to survive the day.
F is doing great. He registered to vote and is super excited about the election. I'll try to write about that later. I couldn't be more proud of him.
Wednesday, September 26, 2012
I abandoned my blog... AGAIN!
Once again I have abandoned my blog. So much has happened since my last posting. Just a quick run down of what's been going on. My daughter started middle school. F's routine has gone into full swing with speech, physical therapy, music therapy, and direct instruction. I seriously contemplated filing for divorce (even downloaded the court documents to do so). We said goodbye to our beloved nurse, Caroline. She was with us over two years. Our family still hasn't recovered from the latter. And let's not forget, I got a diagnosis for F regarding the cysts that keep getting infected by his ears and I started taking a college Algebra class and started marathon training (I ran 14 miles on Monday). Whew! Let me catch my breath.
Now I must sign off and lay my head down. I'm pooped and the day begins at 5:30 am. I've shorted myself sleep once again!
Now I must sign off and lay my head down. I'm pooped and the day begins at 5:30 am. I've shorted myself sleep once again!
Wednesday, August 1, 2012
Prednisone and Asthma Update
Yesterday F had a follow-up visit with the pediatric pulmonologist. We were there to discuss the use of the prednisone. Prior to the appointment I had asked F if he felt that weaning off the prednisone had a negative impact on his breathing? He communicated yes to me. The outcome of our discussion was that it would be in his best interest to begin taking the every other day dose again.
The doctor came in and said that he had reviewed all of F's records and happenings over the last seventeen months (that's how long it had been since F had been to clinic). We explained F's decision to wean down on the prednisone after being told by a handful of doctor's that the secondary skin infections had to do with immune suppression to which the this doctor replied "Do you have urinary tract infections? Do you have other infections sinus, ear, respiratory? Is your blood sugar out of control?" All questions were answered with a no. Although F has had his fair share of infections this year, he did not have an excessive amount of infections (the cysts by his ears... another story completely), other respiratory infections were secondary to viral illnesses, and his lab work looks great.
In a quick nutshell, the doctor spoke directly to F, Caroline, and I. He informed us that this dose of steroid is low. That other doctor's have somewhat of a narrow viewpoint that is isolated to there area and level of expertise. That they are overlooking what is most important and that is the comfort of the patient. That if F breaths easier his body is less stressed. He will have fewer seizures. He will be more comfortable which is ultimately most important. He should be breathing comfortably enough to ENJOY his life and his life's daily activities. Which F admits he's been less comfortable and it has impacted his activities.
I love that the doctor and F interacted together. The doctor understood by facial expression and F's head turns all of his yes and no responses (we do not use high tech communication at appointments it's too fatiguing and stressful). F was pleased with the doctor's plan for him. F was not happy when learned he can no longer be a patient in the clinic because of his age, but was relieved and pleased when he told F he is only a phone call away and that his primary care doctor or any other doctor is always welcome to call and consult with him about his respiratory needs. We have to be diligent and find a primary care doctor who is willing to put the focus on keeping F comfortable to enjoy his daily life and not on solving whatever problem is right in front of us for that moment be it a skin infection, ear infection, or cold.
F needs to be cleared for surgery to have his preauricular cysts removed. Due to the increased inflammation he developed from the use of the lower dose of prednisone from the weaning process F needs a five day prednisone burst to get it under control and then he'll return to his regular 10 mg every other day for his maintenance dose.
Overall this was a valuable learning experience for me, but mostly for F. I think it built F's confidence in himself and his abiltiy to communicate. That he can make his comfort a priority when it comes to his daily needs and care. That it is VERY important for him to be able to live the best life he can.
The doctor came in and said that he had reviewed all of F's records and happenings over the last seventeen months (that's how long it had been since F had been to clinic). We explained F's decision to wean down on the prednisone after being told by a handful of doctor's that the secondary skin infections had to do with immune suppression to which the this doctor replied "Do you have urinary tract infections? Do you have other infections sinus, ear, respiratory? Is your blood sugar out of control?" All questions were answered with a no. Although F has had his fair share of infections this year, he did not have an excessive amount of infections (the cysts by his ears... another story completely), other respiratory infections were secondary to viral illnesses, and his lab work looks great.
In a quick nutshell, the doctor spoke directly to F, Caroline, and I. He informed us that this dose of steroid is low. That other doctor's have somewhat of a narrow viewpoint that is isolated to there area and level of expertise. That they are overlooking what is most important and that is the comfort of the patient. That if F breaths easier his body is less stressed. He will have fewer seizures. He will be more comfortable which is ultimately most important. He should be breathing comfortably enough to ENJOY his life and his life's daily activities. Which F admits he's been less comfortable and it has impacted his activities.
I love that the doctor and F interacted together. The doctor understood by facial expression and F's head turns all of his yes and no responses (we do not use high tech communication at appointments it's too fatiguing and stressful). F was pleased with the doctor's plan for him. F was not happy when learned he can no longer be a patient in the clinic because of his age, but was relieved and pleased when he told F he is only a phone call away and that his primary care doctor or any other doctor is always welcome to call and consult with him about his respiratory needs. We have to be diligent and find a primary care doctor who is willing to put the focus on keeping F comfortable to enjoy his daily life and not on solving whatever problem is right in front of us for that moment be it a skin infection, ear infection, or cold.
F needs to be cleared for surgery to have his preauricular cysts removed. Due to the increased inflammation he developed from the use of the lower dose of prednisone from the weaning process F needs a five day prednisone burst to get it under control and then he'll return to his regular 10 mg every other day for his maintenance dose.
Overall this was a valuable learning experience for me, but mostly for F. I think it built F's confidence in himself and his abiltiy to communicate. That he can make his comfort a priority when it comes to his daily needs and care. That it is VERY important for him to be able to live the best life he can.
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