My Face Book newsfeed has exploded with news of Robin Williams’ suicide, and his struggles with drugs and depression. I am very saddened by the death of this wonderful comedian and actor. Robin Williams was one of kind. A true classic. I can’t imagine the sadness his family is feeling right now. My heart goes out to them.
I find it sad that it takes something like the death of a great comedian to bring a very serious illness to light. People have struggled with mental illness for years, but you rarely hear about it until it happens to someone that’s more “newsworthy”. Is Robin Williams’ life more valuable than Susie that lives down the street? Not in my eyes. Every life is valuable.
Mental illness has a very taboo reputation. You hear it on the news, but only when something tragic has happened as a result.
Why can’t we have mental health funding like we have cancer funding? Why can’t we show mental illness in a day to day environment, showing the people that are struggling, but still making it work. I’m sure there are millions that could represent those struggling with some form of mental illness.
My daughter suffers from a mental illness. General and Social Anxiety, or for short, GAD and SAD. It took me 4 years to get her diagnosed and on medication. Since the medication, she has improved tremendously. She still has her moments, and triggers, but now that she’s on medication, her hair isn’t falling out, as bad, and the weight she had lost is slowly gaining. I asked professionals for 4 years, is this normal? Do you see this? Do you notice these behaviors? No, no and no, she seems fine to me. It wasn’t until this past school year, one of her teachers opened up to me and told me she noticed the behaviors immediately. I asked her why no one would tell me in the past. Because sometimes the parents don’t want to hear the truth, and sometimes parents don’t see it themselves. But I was seeing it, AND asking about it. Still, no one wanted to get involved. I want to help my daughter, not look the other way or act like it’s non existent.
Now that I had a teacher that would confirm my concerns, it was time to talk to the doctor again. Let’s just wait and see if it gets better before we start meds. Okay. Then her hair started falling out, and she lost a lot of weight. The wait was over. Back to the doctor again. Get a referral to be evaluated. Wait a little longer for that appointment. Get a diagnosis. Back to the doctor for meds. Start therapy.
Why does the process have to be so long, and take so much time and effort? 4 years. She’s now 8 years old.
Because I’m only her mother, and not a doctor, I’m not qualified to make a judgement call that something isn’t quite right with my childs behavior?
Getting help is the hardest thing I’ve ever had to do. Family doctors can only prescribe meds, and refer you for evaluations. The people that evaluate, do just that, evaluate, and give their opinion on what they feel is the issue. Then you go to a therapist and spend countless visits learning nothing. When we were seeing the therapist, I would come away with more questions, and no answers.
Mya’s behaviors continue to be erratic. We don’t know what to expect from one day to the next. Do we have the help we need? No. Is the doctor helpful? Only for the meds. Is the therapist helpful? He wasn’t for us. Is the school helpful? Not at all. Where does that leave us? Needing help. Where do we go from here? I honestly don’t know.
Tuesday, September 9, 2014
Wednesday, August 13, 2014
Sensory Integration Disorder
We have more answers. During our last visit with the psychiatrist, Dr. U, he gave Bob and me an Asperger’s questionnaire to complete, separately. I completed mine at the office while he was talking with Mya, and Bob completed his at home. Neither of us knew what the other had listed for our answers, so it was an honest test that showed how we each view Mya and her behaviors. I had anxiously been waiting for our visit yesterday.
Based on what Bob and I answered, he doesn’t think she has Asperger’s, but he did say that one thing we both scored her very high on, was sensory. He believes she has Sensory Integration Disorder (SID). This could explain why she doesn’t like to be hugged; it could explain why she’s a picky eater. It could explain a lot of things.
What happens next? The school OT (occupational therapist) will evaluate her for sensory integration. He said using the school OT would likely be the quickest, least expensive way of having her tested. And, being done in the school system, it will give records that may be helpful in the future.
Since SID is a neurological disorder, she can do OT to help her overcome the sensory issues. He told me about a place, here in town, which comes highly recommended.
Also, he added, working on the SID may help with the anxiety. He gave the example: Imagine her being at school all day, worried to death that someone is going to touch her, or hug her, or maybe there will be a loud noise. For a kid that already has anxiety, this can be torture on a daily basis.
We talked about the meds. I had told him before that the first 2 weeks on meds were amazing. She was a completely different child. She actually went to the board, at school, twice in the first week. The third week, we took a nose dive. He explained that the dosage may need to increase. Again, I expressed my concerns about the meds, and wasn’t sure if being on meds is the right thing to do. He assured me the meds were a good thing to keep her anxiety at bay. Okay. We go this Friday to the family doc to see what he says about dosage. I’m still very nervous.
Since I started this post, and put it on the back burner, we have discontinued our visits with the therapist. We’re still waiting for the evaluation from the OT, and depending on what that shows, we will decide how to proceed from there. The medication dosage remains as it is. I told the pediatrician we would see how things go once school has started. So far, Mya is doing great, she loves her new teacher, and has come home in a good mood every day. I’m keeping my fingers crossed.
TTFN
Based on what Bob and I answered, he doesn’t think she has Asperger’s, but he did say that one thing we both scored her very high on, was sensory. He believes she has Sensory Integration Disorder (SID). This could explain why she doesn’t like to be hugged; it could explain why she’s a picky eater. It could explain a lot of things.
What happens next? The school OT (occupational therapist) will evaluate her for sensory integration. He said using the school OT would likely be the quickest, least expensive way of having her tested. And, being done in the school system, it will give records that may be helpful in the future.
Since SID is a neurological disorder, she can do OT to help her overcome the sensory issues. He told me about a place, here in town, which comes highly recommended.
Also, he added, working on the SID may help with the anxiety. He gave the example: Imagine her being at school all day, worried to death that someone is going to touch her, or hug her, or maybe there will be a loud noise. For a kid that already has anxiety, this can be torture on a daily basis.
We talked about the meds. I had told him before that the first 2 weeks on meds were amazing. She was a completely different child. She actually went to the board, at school, twice in the first week. The third week, we took a nose dive. He explained that the dosage may need to increase. Again, I expressed my concerns about the meds, and wasn’t sure if being on meds is the right thing to do. He assured me the meds were a good thing to keep her anxiety at bay. Okay. We go this Friday to the family doc to see what he says about dosage. I’m still very nervous.
Since I started this post, and put it on the back burner, we have discontinued our visits with the therapist. We’re still waiting for the evaluation from the OT, and depending on what that shows, we will decide how to proceed from there. The medication dosage remains as it is. I told the pediatrician we would see how things go once school has started. So far, Mya is doing great, she loves her new teacher, and has come home in a good mood every day. I’m keeping my fingers crossed.
TTFN
Wednesday, April 9, 2014
At Last, We Have Answers!
Since Mya was about 4 years old, I knew something wasn’t quite right. She was unusually shy, and had quit showing affection toward me, and others. At first I fluffed it off as her being around adults, mostly, and not being comfortable in her peer group. I assumed it would get better when she started school. Kindergarten wasn’t better. 1st grade was horrible, and by 2nd grade, she started losing weight and her hair was falling out. Last year I mentioned my concerns to her doctor, and we just took the wait and see approach. This past fall, when her hair started falling out, the wait and see was over. I told the doctor I wanted her checked out, to rule out anything medical that might be causing the sudden hair and weight loss, and if everything came back okay, I wanted a referral to have her evaluated. Mya was down to 50 pounds, and her hair had thinned significantly. Finally, we had an appointment at the Weisskopf Center in Louisville.
Before our visit, I made a list of observations, explaining various behaviors I was seeing at home. Each year in school, I asked the teachers if they noticed anything odd, or out of the ordinary, only to be told Mya was a good kid, and got along well with others. Hmmm… There was a time I was beginning to wonder if maybe it was me. If I was seeing all these quirky behaviors, and the teachers weren’t, maybe it’s me. Well, this year, when I again mentioned it to her teachers, her all day teacher assured me she was fine. Her Math teacher, on the other hand, said she noticed it almost immediately. I spent a lot of time talking to her Math teacher, and when we prepared for the evaluation, it was the Math teachers input that I used for the “teacher questionnaire”. I received a packet from the Weisskopf Center, and there was a letter for me, instructing me to go online and complete a behavioral form, and there was a letter for her teacher, to do the same. Since I was getting zero information from her all day teacher, I decided to give the letter to her math teacher. When we went for the evaluation, the doctor told me the teacher and I were seeing the exact same behaviors. Not that I want anything to be wrong with my child, but I was so happy to hear those words. I had confirmation. I’m not crazy, or over protective. Then I became angry because had the teachers been honest with me in the past, we could have gotten her help sooner.
The day of the evaluation was long, and exhausting. I’m a talker, and I do believe I wore myself out talking that day. The doctor met with me first, and we talked about everything. Then she met with Mya, and then back with me again.
After talking to Mya, the doctor discovered that Mya has a very low body image, and would like to change many things about her appearance. She thinks she’s fat. Mya feels like she’s not good enough, and she feels she’s a bad person. My heart broke in two. The doctor was very concerned about Mya’s body image issues, not so much for now, but for in a few years, when puberty and body changes start to happen. This will have to be monitored closely so that it doesn’t escalate in the future.
Mya was officially diagnosed with general and social anxiety. She doesn’t want people to look at her. If you see us out, and speak to her, she will not respond. The doctor said we may even notice that she may lie from time to time, but only to tell us what she thinks we want to hear, not to be devious. This is a reaction of her feeling like she’s not good enough, or a bad person. If she lies, and tells us what she thinks we want to hear, in her mind, she thinks it will make her look like a better person.
When we left the doctors office, and were driving home, I asked her if they played games, or just talked. At first she ignored me, which is a sign that she doesn’t want to talk about it. Later, she mentioned something about the visit, so I brought it up again, and she burst into tears. When the doctor took her back, to talk to her, she thought she was in time out. The doctor told her where to sit, and Mya thought it was a time out chair, and she was in trouble. This type of meltdown I’m so used to dealing with. You have to be really careful what you say, because you never know how she’s going to take it. The doctor explained that people with anxiety issues will always grab the negative of a situation. The doctor explained so much about anxiety, and how it affects people. The list of behaviors I took with me made so much more sense.
We started anxiety medication this past Sunday, and on the 25th we will start seeing a therapist. From what I was told, the therapist will give her tools to help her cope and deal with the anxiety. I’m very hopeful.
On a positive note! Yesterday, Mya actually sang with me, in the car. She’s never done that, and in the past would never allow anyone to hear her sing. She was on the honor roll again, for this 9 weeks, and went in front of the crowd to receive her award. Mom asked me this morning if I’ve noticed any changes since the medication, and I told her that I’ve seen small changes, and she said for the first time in forever, Mya hugged her when she came home. My heart is so full of joy to see these wonderful, small things that mean so much. If we’ve seen this much change in a few days, imagine where we’ll be in a month!
Lesson for the day: You know your child, and you know when something isn’t right. If you have the means, push, push, push until you get answers. It’s been a long 3, going on 4, years, but I kept talking and asking questions, and finally, we have answers.
At last, maybe the world will be able to see just how wonderful, funny, and smart Mya is, and not just hear about her in my postings.
Before our visit, I made a list of observations, explaining various behaviors I was seeing at home. Each year in school, I asked the teachers if they noticed anything odd, or out of the ordinary, only to be told Mya was a good kid, and got along well with others. Hmmm… There was a time I was beginning to wonder if maybe it was me. If I was seeing all these quirky behaviors, and the teachers weren’t, maybe it’s me. Well, this year, when I again mentioned it to her teachers, her all day teacher assured me she was fine. Her Math teacher, on the other hand, said she noticed it almost immediately. I spent a lot of time talking to her Math teacher, and when we prepared for the evaluation, it was the Math teachers input that I used for the “teacher questionnaire”. I received a packet from the Weisskopf Center, and there was a letter for me, instructing me to go online and complete a behavioral form, and there was a letter for her teacher, to do the same. Since I was getting zero information from her all day teacher, I decided to give the letter to her math teacher. When we went for the evaluation, the doctor told me the teacher and I were seeing the exact same behaviors. Not that I want anything to be wrong with my child, but I was so happy to hear those words. I had confirmation. I’m not crazy, or over protective. Then I became angry because had the teachers been honest with me in the past, we could have gotten her help sooner.
The day of the evaluation was long, and exhausting. I’m a talker, and I do believe I wore myself out talking that day. The doctor met with me first, and we talked about everything. Then she met with Mya, and then back with me again.
After talking to Mya, the doctor discovered that Mya has a very low body image, and would like to change many things about her appearance. She thinks she’s fat. Mya feels like she’s not good enough, and she feels she’s a bad person. My heart broke in two. The doctor was very concerned about Mya’s body image issues, not so much for now, but for in a few years, when puberty and body changes start to happen. This will have to be monitored closely so that it doesn’t escalate in the future.
Mya was officially diagnosed with general and social anxiety. She doesn’t want people to look at her. If you see us out, and speak to her, she will not respond. The doctor said we may even notice that she may lie from time to time, but only to tell us what she thinks we want to hear, not to be devious. This is a reaction of her feeling like she’s not good enough, or a bad person. If she lies, and tells us what she thinks we want to hear, in her mind, she thinks it will make her look like a better person.
When we left the doctors office, and were driving home, I asked her if they played games, or just talked. At first she ignored me, which is a sign that she doesn’t want to talk about it. Later, she mentioned something about the visit, so I brought it up again, and she burst into tears. When the doctor took her back, to talk to her, she thought she was in time out. The doctor told her where to sit, and Mya thought it was a time out chair, and she was in trouble. This type of meltdown I’m so used to dealing with. You have to be really careful what you say, because you never know how she’s going to take it. The doctor explained that people with anxiety issues will always grab the negative of a situation. The doctor explained so much about anxiety, and how it affects people. The list of behaviors I took with me made so much more sense.
We started anxiety medication this past Sunday, and on the 25th we will start seeing a therapist. From what I was told, the therapist will give her tools to help her cope and deal with the anxiety. I’m very hopeful.
On a positive note! Yesterday, Mya actually sang with me, in the car. She’s never done that, and in the past would never allow anyone to hear her sing. She was on the honor roll again, for this 9 weeks, and went in front of the crowd to receive her award. Mom asked me this morning if I’ve noticed any changes since the medication, and I told her that I’ve seen small changes, and she said for the first time in forever, Mya hugged her when she came home. My heart is so full of joy to see these wonderful, small things that mean so much. If we’ve seen this much change in a few days, imagine where we’ll be in a month!
Lesson for the day: You know your child, and you know when something isn’t right. If you have the means, push, push, push until you get answers. It’s been a long 3, going on 4, years, but I kept talking and asking questions, and finally, we have answers.
At last, maybe the world will be able to see just how wonderful, funny, and smart Mya is, and not just hear about her in my postings.
Wednesday, March 26, 2014
What is Rheumatoid Arthritis, or RA?
Web MD describes it as such:
Arthritis means inflammation in a joint. Joint inflammation causes redness, warmth, swelling, and pain within the joint.
Rheumatoid arthritis is a type of chronic arthritis that occurs in joints on both sides of the body (such as both hands, both wrists, or both knees). This symmetry helps distinguish rheumatoid arthritis from other types of arthritis.
Rheumatoid arthritis may also affect the skin, eyes, lungs, heart, blood, or nerves.
Symptoms of rheumatoid arthritis are:
• Joint pain and swelling
• Stiffness, especially in the morning or after sitting for long periods
• Fatigue
How do I define RA? Life sucker.
What they don’t tell you in the description, or the symptoms, is that the fatigue is so bad; you can hardly drag yourself out of bed most days.
I was diagnosed with RA a few years ago, after struggling for a diagnosis for almost 3 years. All the signs and symptoms were there, but I didn’t test positive for the RA blood test, so the doctor kept testing, and prescribing meds, for everything else he could think of. I switched doctors, and she did her own blood work, and x-rays, and immediately gave me the diagnosis, and started me on medication to prevent further joint damage.
Medications are tricky when it comes to RA, and there are 100’s of medications, and concoctions they can try so as to find the right treatment for you.
I started on Methotrexate (MTX), initially. Methotrexate is described as:
METHOTREXATE is a chemotherapy drug. This medicine affects cells that are rapidly growing, such as cancer cells and cells in your mouth and stomach. It is used to treat many cancers and other medical conditions.
I started on a low, weekly dose, and gradually increased to 10 pills taken at one time, once a week.
Now, the tricky thing about MTX is, in order to offset the side effects, you are also given a prescription of folic acid, and with me having a sensitive stomach, I was already on Omeprazole, which is basically prescription strength Zantac, or similar. I noticed, after starting the medication, I was having terrible headaches on a daily basis. I later discovered, by process of elimination, the headaches were from the folic acid. As long as I don’t take the folic acid, I don’t have headaches. Guess what, I stopped taking the folic acid. The down side, if I don’t take the folic acid, I get mouth sores, and some slight hair loss. The mouth sores aren’t so bad that I go back to the folic acid. On the plus side, the MTX did significantly slow the hair growth on my legs! Win!
After a few months of no relief, I was put on Humira injections, and taken off of methotrexate. I was scared to death to give myself a shot, so Bob does that for me. Even today, I still can’t bring myself to do it. I know, I’m a chicken, but there’s just something about inflicting pain on yourself. I take the shots in my stomach, and was so scared when we did the first shot; I thought I was going to pass out. Turns out, they only sting, just a bit, while the medicine is being injected. The needle part is practically pain free.
I had some issues with my insurance and getting my Humira injections started, so I was without any medications for almost a month. It was then that I realized just how much the MTX was doing for me. After being on the Humira for a few months, and not seeing a difference, the doctor put me on a Humira and MTX treatment. Now I take my shots, and am back to my weekly doses of MTX. Right now I’m taking only 6 pills each week, instead of the 10 I was taking previously. So far, no improvement.
The other thing they don’t tell you is that you will have okay days, and you will have bad days. Pain is a constant, and you just learn to live with the daily discomfort, but there are days the pain is almost unbearable, not so much because it’s extreme pain, but because it’s a constant pain, that doesn’t let up.
Shoes. Oh, how I love my shoes. With RA, I’ve had to give up my heels and cute, strappy sandals. Anything that squeezes the sides of my feet, or goes over the top of my feet, is no longer an option. It’s very difficult to buy shoes that are stylish, age appropriate, and feel good. So, with RA, comes sacrifice. Major sacrifice. :)
Swelling. When I get home, my feet are so swollen, it’s ridiculous looking. It’s not the type of swelling you get when you retain water, it’s in different areas of the foot and ankle, so it’s actually quite odd looking. The knuckles on my hands will swell and turn red, and those hurt to move, or even touch them.
Eyes. Who would have thought RA can affect your eyes. I thought I had pink eye, my eyes were so red and puffy. The only thing I couldn’t figure out was why did it feel like someone was trying to squeeze my eyeballs, as if trying to get them to burst. After a doctor’s visit, and then an ophthalmologist visit, I discovered it was inflammation in my eyes, and not pink eye at all. More medication! At least this was eye drops and not more meds on my stomach. I will occasionally get inflammation in my eyes, and after several days, it will subside. I’m not sure if there are any long term effects of eye inflammation. I guess I need to make a note and ask the doctor.
Activity. While gentle walking is good for the joints, and helps prevent stiffness, finding the energy to do any type of walking is very difficult. If you do find the energy, within 15 minutes, it hurts so bad, you can’t stand the thought of walking back. I used to be so active. I danced; I played coed soccer and basketball, and was always on the go. Now, not so much. With reduced activity comes weight gain. And, boy have I put on the weight. This makes me sad because I worked really hard to lose all my weight about 10 - 12 years ago. Now I’m bigger than ever.
People. It’s a good thing I don’t take things to heart. My Dad is always telling me about an herbal cure for “arthritis”, and no matter how many times I try to tell him that RA is different than osteoarthritis, he still insists on the cures he sees on Dr. Oz. I just shake my head and move on. The thing is, to look at me; you don’t see the pain in my feet, knees, hips, and hands. I look perfectly normal. I think I do a pretty good job of keeping my illness to myself, and I try to keep my complaining to a minimum, or at least keep it down to just one or two people. It’s hard some days, especially if I’m having a bad day, and have to be at work. All I can think about is going home and wrapping up in a blanket, and sleeping, but the show must go on, so you have to push forward.
Living. I would love to be able to put on my dancing shoes and dance like I used to, but it won’t happen. I would love to have the energy to chase Mya around the yard, or shop all day with Andrew, but it won’t happen. Day long events require a couple of days of down time, just to recover. Long shopping trips means a long night of pain, and a morning of even worse pain. My life will never be what it was, but I’m alive, and I’m thankful for that. I’m well enough to spend quality time with my kids, even though it may not be the most fun time for them.
Marriage. I have to say, RA has taken a toll on my marriage. I’m completely and utterly exhausted all the time. By the time I get home from work, get dinner, clean up the kitchen, get homework, and everything else done that needs to be done, for the next day, I’m wiped out. It doesn’t leave much when it comes to intimacy. I feel guilty a lot of times, and sometimes I struggle with how to handle it all. I’m lucky that Bob understands, or at least pretends like he does, if he doesn’t. Not that our marriage is in trouble, but it’s nothing like it used to be when we were both healthy.
I don’t want sympathy, and I’m not writing this to gain sympathy. I just want to make people aware that not all illnesses are outward illnesses. Never judge a book by its cover. While you may see me smiling, joking, and laughing on the outside, I’m struggling, daily, with pain that will never go away. I struggle, worrying that one day I will be crippled and disfigured, or worse, the RA will affect my heart.
My daily lesson: Don’t take your health for granted. Live, laugh, and love, with everything you have. And, as the saying goes, dance like no one is watching.
TTFN
Web MD describes it as such:
Arthritis means inflammation in a joint. Joint inflammation causes redness, warmth, swelling, and pain within the joint.
Rheumatoid arthritis is a type of chronic arthritis that occurs in joints on both sides of the body (such as both hands, both wrists, or both knees). This symmetry helps distinguish rheumatoid arthritis from other types of arthritis.
Rheumatoid arthritis may also affect the skin, eyes, lungs, heart, blood, or nerves.
Symptoms of rheumatoid arthritis are:
• Joint pain and swelling
• Stiffness, especially in the morning or after sitting for long periods
• Fatigue
How do I define RA? Life sucker.
What they don’t tell you in the description, or the symptoms, is that the fatigue is so bad; you can hardly drag yourself out of bed most days.
I was diagnosed with RA a few years ago, after struggling for a diagnosis for almost 3 years. All the signs and symptoms were there, but I didn’t test positive for the RA blood test, so the doctor kept testing, and prescribing meds, for everything else he could think of. I switched doctors, and she did her own blood work, and x-rays, and immediately gave me the diagnosis, and started me on medication to prevent further joint damage.
Medications are tricky when it comes to RA, and there are 100’s of medications, and concoctions they can try so as to find the right treatment for you.
I started on Methotrexate (MTX), initially. Methotrexate is described as:
METHOTREXATE is a chemotherapy drug. This medicine affects cells that are rapidly growing, such as cancer cells and cells in your mouth and stomach. It is used to treat many cancers and other medical conditions.
I started on a low, weekly dose, and gradually increased to 10 pills taken at one time, once a week.
Now, the tricky thing about MTX is, in order to offset the side effects, you are also given a prescription of folic acid, and with me having a sensitive stomach, I was already on Omeprazole, which is basically prescription strength Zantac, or similar. I noticed, after starting the medication, I was having terrible headaches on a daily basis. I later discovered, by process of elimination, the headaches were from the folic acid. As long as I don’t take the folic acid, I don’t have headaches. Guess what, I stopped taking the folic acid. The down side, if I don’t take the folic acid, I get mouth sores, and some slight hair loss. The mouth sores aren’t so bad that I go back to the folic acid. On the plus side, the MTX did significantly slow the hair growth on my legs! Win!
After a few months of no relief, I was put on Humira injections, and taken off of methotrexate. I was scared to death to give myself a shot, so Bob does that for me. Even today, I still can’t bring myself to do it. I know, I’m a chicken, but there’s just something about inflicting pain on yourself. I take the shots in my stomach, and was so scared when we did the first shot; I thought I was going to pass out. Turns out, they only sting, just a bit, while the medicine is being injected. The needle part is practically pain free.
I had some issues with my insurance and getting my Humira injections started, so I was without any medications for almost a month. It was then that I realized just how much the MTX was doing for me. After being on the Humira for a few months, and not seeing a difference, the doctor put me on a Humira and MTX treatment. Now I take my shots, and am back to my weekly doses of MTX. Right now I’m taking only 6 pills each week, instead of the 10 I was taking previously. So far, no improvement.
The other thing they don’t tell you is that you will have okay days, and you will have bad days. Pain is a constant, and you just learn to live with the daily discomfort, but there are days the pain is almost unbearable, not so much because it’s extreme pain, but because it’s a constant pain, that doesn’t let up.
Shoes. Oh, how I love my shoes. With RA, I’ve had to give up my heels and cute, strappy sandals. Anything that squeezes the sides of my feet, or goes over the top of my feet, is no longer an option. It’s very difficult to buy shoes that are stylish, age appropriate, and feel good. So, with RA, comes sacrifice. Major sacrifice. :)
Swelling. When I get home, my feet are so swollen, it’s ridiculous looking. It’s not the type of swelling you get when you retain water, it’s in different areas of the foot and ankle, so it’s actually quite odd looking. The knuckles on my hands will swell and turn red, and those hurt to move, or even touch them.
Eyes. Who would have thought RA can affect your eyes. I thought I had pink eye, my eyes were so red and puffy. The only thing I couldn’t figure out was why did it feel like someone was trying to squeeze my eyeballs, as if trying to get them to burst. After a doctor’s visit, and then an ophthalmologist visit, I discovered it was inflammation in my eyes, and not pink eye at all. More medication! At least this was eye drops and not more meds on my stomach. I will occasionally get inflammation in my eyes, and after several days, it will subside. I’m not sure if there are any long term effects of eye inflammation. I guess I need to make a note and ask the doctor.
Activity. While gentle walking is good for the joints, and helps prevent stiffness, finding the energy to do any type of walking is very difficult. If you do find the energy, within 15 minutes, it hurts so bad, you can’t stand the thought of walking back. I used to be so active. I danced; I played coed soccer and basketball, and was always on the go. Now, not so much. With reduced activity comes weight gain. And, boy have I put on the weight. This makes me sad because I worked really hard to lose all my weight about 10 - 12 years ago. Now I’m bigger than ever.
People. It’s a good thing I don’t take things to heart. My Dad is always telling me about an herbal cure for “arthritis”, and no matter how many times I try to tell him that RA is different than osteoarthritis, he still insists on the cures he sees on Dr. Oz. I just shake my head and move on. The thing is, to look at me; you don’t see the pain in my feet, knees, hips, and hands. I look perfectly normal. I think I do a pretty good job of keeping my illness to myself, and I try to keep my complaining to a minimum, or at least keep it down to just one or two people. It’s hard some days, especially if I’m having a bad day, and have to be at work. All I can think about is going home and wrapping up in a blanket, and sleeping, but the show must go on, so you have to push forward.
Living. I would love to be able to put on my dancing shoes and dance like I used to, but it won’t happen. I would love to have the energy to chase Mya around the yard, or shop all day with Andrew, but it won’t happen. Day long events require a couple of days of down time, just to recover. Long shopping trips means a long night of pain, and a morning of even worse pain. My life will never be what it was, but I’m alive, and I’m thankful for that. I’m well enough to spend quality time with my kids, even though it may not be the most fun time for them.
Marriage. I have to say, RA has taken a toll on my marriage. I’m completely and utterly exhausted all the time. By the time I get home from work, get dinner, clean up the kitchen, get homework, and everything else done that needs to be done, for the next day, I’m wiped out. It doesn’t leave much when it comes to intimacy. I feel guilty a lot of times, and sometimes I struggle with how to handle it all. I’m lucky that Bob understands, or at least pretends like he does, if he doesn’t. Not that our marriage is in trouble, but it’s nothing like it used to be when we were both healthy.
I don’t want sympathy, and I’m not writing this to gain sympathy. I just want to make people aware that not all illnesses are outward illnesses. Never judge a book by its cover. While you may see me smiling, joking, and laughing on the outside, I’m struggling, daily, with pain that will never go away. I struggle, worrying that one day I will be crippled and disfigured, or worse, the RA will affect my heart.
My daily lesson: Don’t take your health for granted. Live, laugh, and love, with everything you have. And, as the saying goes, dance like no one is watching.
TTFN
Monday, October 28, 2013
How Would You Respond?
Several years ago my son stopped by to visit. I could tell by the way he was pacing, he had something on his mind. We stepped outside to talk, and finally he told me he wanted to tell me something. He told me he thought he had romantic feelings for a good friend of his. His friend is male.
How would you react to this news, from your adult child?
I’ve heard many replies that vary from supportive, to downright cruel.
I would disown them. Really? You would turn your back on your child? They need to get right with God. Do you think that God wasn’t his creator as well? He’s going to Hell, it’s a sin. Isn’t judging someone a sin? Gays are sick. Fags need to be shot. The list goes on and on.
When I hear people say these things, it hurts. It hurts because he’s my child, and I love him with all my heart and soul. It hurts because I know there are so many cruel people in this world. It hurts because I know he will have a hard time finding acceptance among certain crowds or groups.
To turn my back on my son, when he came to me with this news, would be a sad situation on my part. I think the reason so many LGBT kids take their lives is because they have no one to turn to. I’m happy my kids can come to me, and talk to me, no matter what the situation.
Our family is very conservative, so there are many that don’t know. Not because I’m ashamed to tell them, but because I’m afraid of what they might say, whether it’s to me, or to him. As a Mother, I want to protect my child.
Is my son happy? Very. He’s been in a monogamous relationship for 5 years. He has completed his Masters degree. He has a home. He hopes to adopt in the future.
How did I respond? With as much love and support as I could offer. He's my child, and I won't turn my back on him.
How would you react to this news, from your adult child?
I’ve heard many replies that vary from supportive, to downright cruel.
I would disown them. Really? You would turn your back on your child? They need to get right with God. Do you think that God wasn’t his creator as well? He’s going to Hell, it’s a sin. Isn’t judging someone a sin? Gays are sick. Fags need to be shot. The list goes on and on.
When I hear people say these things, it hurts. It hurts because he’s my child, and I love him with all my heart and soul. It hurts because I know there are so many cruel people in this world. It hurts because I know he will have a hard time finding acceptance among certain crowds or groups.
To turn my back on my son, when he came to me with this news, would be a sad situation on my part. I think the reason so many LGBT kids take their lives is because they have no one to turn to. I’m happy my kids can come to me, and talk to me, no matter what the situation.
Our family is very conservative, so there are many that don’t know. Not because I’m ashamed to tell them, but because I’m afraid of what they might say, whether it’s to me, or to him. As a Mother, I want to protect my child.
Is my son happy? Very. He’s been in a monogamous relationship for 5 years. He has completed his Masters degree. He has a home. He hopes to adopt in the future.
How did I respond? With as much love and support as I could offer. He's my child, and I won't turn my back on him.
Wednesday, October 9, 2013
Michelle Obama Can Shove Her Broccoli
Last year the school starting giving kids “healthy eating” talks, as part of the “Let’s Move” campaign. While I’m a firm believer in healthy eating, I do not think it’s the schools place to put our children on diets. I feel it is my responsibility to raise my children; the school is there to educate my children so they can be productive members of society. I know that sounds hypocritical, but as a parent, isn’t it my responsibility to feed, clothe and assure their safety and well being? Then why does the school feel the need to step in to my area of responsibilities?
My daughter started hearing the lectures in 1st grade. Now, there are ways to go about teaching children to be healthy and active, but reinforcing the word FAT is not one of them. In 1st grade, my daughter started refusing to wear certain clothes “because they make her look fat”. Mind you, my daughter is anything but fat!
Let’s skip ahead to 2nd grade, where my daughter is leaner than she was in 1st. A week or so ago, I attended a healthy eating lecture at the school. Again, it’s great they want the kids to be healthy, but the way they’re throwing this out to the kids, is in no way healthy for developing minds. Fat is a bad word. It’s bad to be fat. Those were the ideas I was left with when the lecture was over.
My daughter has told me the cucumbers she eats all the time are going to make her fat. About a week later, she told me she shouldn’t be drinking milk, because it is making her fat. She will show me her belly and comment on how fat it is. Notice the word fat being thrown around so freely? Just this week, she showed my Mom her belly and told her “look how fat it is”. My Mom showed her the ribs sticking out, both on her sides, as well as on her chest.
MY CHILD IS NOT FAT! PLEASE STOP WITH THE LECTURES THAT MAKE HER FEEL THIS WAY ABOUT HER BODY!
Not only are the lectures putting body image issues in her mind at an early age (that will come soon enough, thank you very much), it’s also teaching her that overweight people are bad. I don’t want her to think overweight people are bad people. There are people with health issues, beyond their control, that cause them to keep extra weight. I don’t want her to look at people, and judge them, based on their size.
My daughter doesn’t always eat healthy, but, for the most part, she does very well. On the flip side of that, and this seems to be an “after thought” in the lectures, she’s very active. She’s not ADHD active, but she has been known to climb a few walls. When I went to the lecture at the school, they briefly mentioned activity being part of a healthy lifestyle. I know diet and exercise are the key to a healthy lifestyle. If the schools are so head strong on making sure our kids aren’t FAT, then why did they take away P.E.? When I was in school, from 1st through 8th grade, we had P.E. every day, for an hour. AND!!! we also got 10 to 15 minutes of recess every single day of the week. We had the FAT laden food the cafeteria served, we weren’t obese. Now, the kids get P.E. once a week, and recess is not ever guaranteed. What happened there?
I want my kids to be healthy, but I don’t want my kids to be unhealthy. When my already thin 7 year old thinks she’s fat, we’re not heading in the right direction. At this rate, she will be anorexic by the time she’s 10. I think we need to rethink our goals and training for a “healthy lifestyle” for our future. In my opinion, the first step should be eliminating the word FAT from the lesson.
My daughter started hearing the lectures in 1st grade. Now, there are ways to go about teaching children to be healthy and active, but reinforcing the word FAT is not one of them. In 1st grade, my daughter started refusing to wear certain clothes “because they make her look fat”. Mind you, my daughter is anything but fat!
Let’s skip ahead to 2nd grade, where my daughter is leaner than she was in 1st. A week or so ago, I attended a healthy eating lecture at the school. Again, it’s great they want the kids to be healthy, but the way they’re throwing this out to the kids, is in no way healthy for developing minds. Fat is a bad word. It’s bad to be fat. Those were the ideas I was left with when the lecture was over.
My daughter has told me the cucumbers she eats all the time are going to make her fat. About a week later, she told me she shouldn’t be drinking milk, because it is making her fat. She will show me her belly and comment on how fat it is. Notice the word fat being thrown around so freely? Just this week, she showed my Mom her belly and told her “look how fat it is”. My Mom showed her the ribs sticking out, both on her sides, as well as on her chest.
MY CHILD IS NOT FAT! PLEASE STOP WITH THE LECTURES THAT MAKE HER FEEL THIS WAY ABOUT HER BODY!
Not only are the lectures putting body image issues in her mind at an early age (that will come soon enough, thank you very much), it’s also teaching her that overweight people are bad. I don’t want her to think overweight people are bad people. There are people with health issues, beyond their control, that cause them to keep extra weight. I don’t want her to look at people, and judge them, based on their size.
My daughter doesn’t always eat healthy, but, for the most part, she does very well. On the flip side of that, and this seems to be an “after thought” in the lectures, she’s very active. She’s not ADHD active, but she has been known to climb a few walls. When I went to the lecture at the school, they briefly mentioned activity being part of a healthy lifestyle. I know diet and exercise are the key to a healthy lifestyle. If the schools are so head strong on making sure our kids aren’t FAT, then why did they take away P.E.? When I was in school, from 1st through 8th grade, we had P.E. every day, for an hour. AND!!! we also got 10 to 15 minutes of recess every single day of the week. We had the FAT laden food the cafeteria served, we weren’t obese. Now, the kids get P.E. once a week, and recess is not ever guaranteed. What happened there?
I want my kids to be healthy, but I don’t want my kids to be unhealthy. When my already thin 7 year old thinks she’s fat, we’re not heading in the right direction. At this rate, she will be anorexic by the time she’s 10. I think we need to rethink our goals and training for a “healthy lifestyle” for our future. In my opinion, the first step should be eliminating the word FAT from the lesson.
Monday, October 7, 2013
Speaking Of Mya
"The wildest colts make the best horses."
-Plutarch, Greek Essayist (46-120 A.D.)
"The next time your child acts like a bucking bronco, be encouraged that her spirit is strong. That’s a good thing. She will be less likely to follow the crowd or to get lost in the shuffle. Be heartened that she will make waves in this world instead of drowning in anonymity. I’m a firm believer that being strong-willed is not a bad thing. It takes a pretty strong will to make it in this world. Trust me. If you want your child to grow up and be a leader, a person of influence, you want her to be strong-willed.
That does not mean that we wink and smile when our kids misbehave. We show our children what choices they have and what choices they don’t have in this world. And we have firmly established boundaries and consequences in place for the choices that they make. But, we do our best not to take it personally when our children push back against us. Our job, after all, is not to break our child’s spirit. It is to show her how to harness it."
-Hal Runkel, LMFT, Author of ScreamFree Parenting & ScreamFree Marriage
While the quote, and the tip for the day, refer to wild colts, or broncos, I sometimes find myself referring to Mya as a wild thing. I've always said, if I had a girl, I want her to be strong willed. Yes, we argue. Yes, we're both stubborn. Yes, she tries me, and pushes the limits. Yes, there are days I want to pull my hair out, or scream at the top of my lungs.
No, I wouldn't have it any other way.
-Plutarch, Greek Essayist (46-120 A.D.)
"The next time your child acts like a bucking bronco, be encouraged that her spirit is strong. That’s a good thing. She will be less likely to follow the crowd or to get lost in the shuffle. Be heartened that she will make waves in this world instead of drowning in anonymity. I’m a firm believer that being strong-willed is not a bad thing. It takes a pretty strong will to make it in this world. Trust me. If you want your child to grow up and be a leader, a person of influence, you want her to be strong-willed.
That does not mean that we wink and smile when our kids misbehave. We show our children what choices they have and what choices they don’t have in this world. And we have firmly established boundaries and consequences in place for the choices that they make. But, we do our best not to take it personally when our children push back against us. Our job, after all, is not to break our child’s spirit. It is to show her how to harness it."
-Hal Runkel, LMFT, Author of ScreamFree Parenting & ScreamFree Marriage
While the quote, and the tip for the day, refer to wild colts, or broncos, I sometimes find myself referring to Mya as a wild thing. I've always said, if I had a girl, I want her to be strong willed. Yes, we argue. Yes, we're both stubborn. Yes, she tries me, and pushes the limits. Yes, there are days I want to pull my hair out, or scream at the top of my lungs.
No, I wouldn't have it any other way.
Friday, October 4, 2013
My Unsociable Butterfly
I’m writing this piece because it has bothered me for a couple of years that an educator thought my 5 year old was rude, because she wouldn’t speak to her.
For years I would refer to my now 7 year old, as anti-social. The doctor told me anti-social personality means you’re a menace to society. I was using the term incorrectly.
If you see us out, you will see a lively, rambunctious 7 year old. If you approach us, and speak to my daughter, she will look at you as if you have 4 heads. See, my daughter won’t talk to you, and heaven forbid you try to touch her. She’s not being rude, she’s our unsociable butterfly. You will find her, at a distance, flitting around, carefree, but if you approach her, she quickly becomes withdrawn. She will not talk to you. She’s not being rude, or disrespectful to you, she’s being Mya. She’s this way with most family member, so please don’t take it personally.
On the flip side, there are some people Mya will immediately gravitate toward, and act like she’s known them her entire life. Why is that? I have no idea.
I’ve struggled for years, trying to get her to open up and share her wonderful personality with the rest of the world. Dance classes, gymnastics, soccer, anything, where I could get her involved and it required interaction with others. Dance was a disaster. Mya wouldn’t go in the room without me, and the instructor took her from me and held her, and I left, closing the door behind me. I knew the cries and screams could go on for hours, but the teacher didn’t. After 4 classes, we were told “I don’t think she’s ready”. Gymnastics was great until she moved up to a class that not longer allowed the parents to be involved. Again, she wouldn’t go without me, and the gym made some exceptions for us. After a while, it didn’t get any better, so we moved on from there. Soccer was great, for a while. The coach would have to come and get her, in order to get her on the field, and once she was out there, she loved it, and was good at it. During the breaks, I would encourage her to run and play with the other kids, but she would choose to come and sit with us. Once she moved up and was with a larger group of kids, with most of them being new faces, she totally lost interest in soccer. As an outgoing Mom, it hurts to see your daughter missing out on so much fun. It hurts to see your daughter laughing, from the sidelines, while watching the other kids run, laugh and play. I know she wanted to join them, but something in her wouldn’t allow it. If a child did approach her and invite her to join them, she would turn her eyes from them, as if she didn’t see them. I promise you, she’ not being stuck up, or thinking she’s better than your child. She doesn’t know how to interact with her peer group.
When Mya was about 4, she quit giving hugs and kisses. Oh, how I loved those sweet little arms around my neck, and the sloppy kisses. Only 2 people are now allowed to hug and kiss Mya, and that’s me, and her Mamaw. She will stand firmly while you give her hugs, but she will allow me to hug her. She will tolerate you kissing her cheeks, but don’t expect the same affections from her. There are times she will come to me, and give me the biggest hug. Oh how I savor it, and take in the sweetness. From the time she was a baby, we would always hug and kiss each other, and say our “I love you’s”, at bedtime. Not any more. We always tell Mya goodnight, and I love you, but we never expect to hear it in return. I know in my heart, Mya loves us with all her being, I never doubt that, but over the years, I’ve come to accept, this is Mya.
Last year, Mya and I switched doctors. We had been seeing her previous doctor for probably 4 or 5 years. In all the time we were at the previous doctor, Mya never spoke a word to her. The doctor was bubbly, and always walked in the room with open arms, ready to give hugs. Again, heaven forbid you try to touch her. Mya would always, immediately, bury herself into me and try to get as far away as possible. When we had our first visit with the new doctor, I scheduled the appointments so that I could be seen first, because I wanted to talk to the doctor, about Mya’s behavior, without her being in the room. I gave a few examples of her behavior, and expressed my concerns. He asked a few questions and then asked to have Mya brought in to join us. Mya was so cooperative, but when he would talk to her, she wouldn’t respond. She asked me if I could leave the room, she didn’t want me in there while she talked. I left the room, but stood outside the door, with the door slightly open so I could hear. Mya answered all his questions, without hesitation. In doing so, it made me look and feel like I have totally over exaggerated everything. But I didn’t. Oh my gosh, what if it was me? Have I been holding Mya back? No, I have tried everything to encourage her to engage with others. Maybe I’ve pushed too hard. No, because after the dance incident, I never pushed her that far again.
To this day, my 7 year old still struggles in social situations. I don’t know what to do to help her, other than be supportive.
Unless you’ve dealt with YOUR child exhibiting this type of behavior, please don’t think my child is rude. She’s not rude, she’s our unsociable butterfly, she’s Mya, and she’s just being herself.
For years I would refer to my now 7 year old, as anti-social. The doctor told me anti-social personality means you’re a menace to society. I was using the term incorrectly.
If you see us out, you will see a lively, rambunctious 7 year old. If you approach us, and speak to my daughter, she will look at you as if you have 4 heads. See, my daughter won’t talk to you, and heaven forbid you try to touch her. She’s not being rude, she’s our unsociable butterfly. You will find her, at a distance, flitting around, carefree, but if you approach her, she quickly becomes withdrawn. She will not talk to you. She’s not being rude, or disrespectful to you, she’s being Mya. She’s this way with most family member, so please don’t take it personally.
On the flip side, there are some people Mya will immediately gravitate toward, and act like she’s known them her entire life. Why is that? I have no idea.
I’ve struggled for years, trying to get her to open up and share her wonderful personality with the rest of the world. Dance classes, gymnastics, soccer, anything, where I could get her involved and it required interaction with others. Dance was a disaster. Mya wouldn’t go in the room without me, and the instructor took her from me and held her, and I left, closing the door behind me. I knew the cries and screams could go on for hours, but the teacher didn’t. After 4 classes, we were told “I don’t think she’s ready”. Gymnastics was great until she moved up to a class that not longer allowed the parents to be involved. Again, she wouldn’t go without me, and the gym made some exceptions for us. After a while, it didn’t get any better, so we moved on from there. Soccer was great, for a while. The coach would have to come and get her, in order to get her on the field, and once she was out there, she loved it, and was good at it. During the breaks, I would encourage her to run and play with the other kids, but she would choose to come and sit with us. Once she moved up and was with a larger group of kids, with most of them being new faces, she totally lost interest in soccer. As an outgoing Mom, it hurts to see your daughter missing out on so much fun. It hurts to see your daughter laughing, from the sidelines, while watching the other kids run, laugh and play. I know she wanted to join them, but something in her wouldn’t allow it. If a child did approach her and invite her to join them, she would turn her eyes from them, as if she didn’t see them. I promise you, she’ not being stuck up, or thinking she’s better than your child. She doesn’t know how to interact with her peer group.
When Mya was about 4, she quit giving hugs and kisses. Oh, how I loved those sweet little arms around my neck, and the sloppy kisses. Only 2 people are now allowed to hug and kiss Mya, and that’s me, and her Mamaw. She will stand firmly while you give her hugs, but she will allow me to hug her. She will tolerate you kissing her cheeks, but don’t expect the same affections from her. There are times she will come to me, and give me the biggest hug. Oh how I savor it, and take in the sweetness. From the time she was a baby, we would always hug and kiss each other, and say our “I love you’s”, at bedtime. Not any more. We always tell Mya goodnight, and I love you, but we never expect to hear it in return. I know in my heart, Mya loves us with all her being, I never doubt that, but over the years, I’ve come to accept, this is Mya.
Last year, Mya and I switched doctors. We had been seeing her previous doctor for probably 4 or 5 years. In all the time we were at the previous doctor, Mya never spoke a word to her. The doctor was bubbly, and always walked in the room with open arms, ready to give hugs. Again, heaven forbid you try to touch her. Mya would always, immediately, bury herself into me and try to get as far away as possible. When we had our first visit with the new doctor, I scheduled the appointments so that I could be seen first, because I wanted to talk to the doctor, about Mya’s behavior, without her being in the room. I gave a few examples of her behavior, and expressed my concerns. He asked a few questions and then asked to have Mya brought in to join us. Mya was so cooperative, but when he would talk to her, she wouldn’t respond. She asked me if I could leave the room, she didn’t want me in there while she talked. I left the room, but stood outside the door, with the door slightly open so I could hear. Mya answered all his questions, without hesitation. In doing so, it made me look and feel like I have totally over exaggerated everything. But I didn’t. Oh my gosh, what if it was me? Have I been holding Mya back? No, I have tried everything to encourage her to engage with others. Maybe I’ve pushed too hard. No, because after the dance incident, I never pushed her that far again.
To this day, my 7 year old still struggles in social situations. I don’t know what to do to help her, other than be supportive.
Unless you’ve dealt with YOUR child exhibiting this type of behavior, please don’t think my child is rude. She’s not rude, she’s our unsociable butterfly, she’s Mya, and she’s just being herself.
Wednesday, March 23, 2011
Easter
With Easter only a month away, I just have to post my all time favorite Easter picture! I knew Mya would be terrified, so I told the lady to get ready to take the picture as soon as I set Mya on his lap. I didnt' care what the picture looked like, I wanted to capture her true reaction at that age. I love it!
Easter Dress: $50.00
Easter Shoes: $20.00
Easter Basket: $30.00
Picture with the Easter Bunny the day before Easter: Priceless!!!
Easter Dress: $50.00
Easter Shoes: $20.00
Easter Basket: $30.00
Picture with the Easter Bunny the day before Easter: Priceless!!!
New Glasses
Mya had to get glasses. While at first she cried, she's doing much better about wearing them.
Friday, February 18, 2011
Wow!
I can’t believe it’s been 4 months since I’ve posted. Of course, there are all kinds of things going on, yet nothing exciting to tell.
We’re expecting a new baby in the family. My brother and his girlfriend are expecting Bentley any day now. With all the little girls running around, it’s refreshing to hear we’ll have a baby boy.
Mya will start Kindergarten in the Fall, and the closer it gets to Fall, the more I lean toward home schooling. Not really, I’m just so nervous about her starting school, and the separation anxiety I know we’ll both suffer. Since Mya stays with Mom while we work, and pretty much being an only child at home, she’s not comfortable around kids her own age, especially large groups of kids her own age. I know she will love school once she gets over the newness of everything, but those first few weeks will be tough on all of us, I’m sure.
We’re planning a weekend getaway soon, and we’re all looking forward to it. Bob and I told Mya about it this morning, and she doesn’t want to wait, she wants to go now. Me too! We invited Andrew and James to go along, but they declined, so I guess it’s just the three of us. We will stay at the Lodge, which I love! The rooms are so nice, and they each have a porch that looks out over the lake. I can hardly wait to sit on the porch with a hot cup of coffee and enjoy the sunrise. Of course, they have the most awesome shops, and a fabulous Variety Show, which we will see while we’re there. I’m getting more excited just writing about it. Just a few more weeks!
TTFN!
We’re expecting a new baby in the family. My brother and his girlfriend are expecting Bentley any day now. With all the little girls running around, it’s refreshing to hear we’ll have a baby boy.
Mya will start Kindergarten in the Fall, and the closer it gets to Fall, the more I lean toward home schooling. Not really, I’m just so nervous about her starting school, and the separation anxiety I know we’ll both suffer. Since Mya stays with Mom while we work, and pretty much being an only child at home, she’s not comfortable around kids her own age, especially large groups of kids her own age. I know she will love school once she gets over the newness of everything, but those first few weeks will be tough on all of us, I’m sure.
We’re planning a weekend getaway soon, and we’re all looking forward to it. Bob and I told Mya about it this morning, and she doesn’t want to wait, she wants to go now. Me too! We invited Andrew and James to go along, but they declined, so I guess it’s just the three of us. We will stay at the Lodge, which I love! The rooms are so nice, and they each have a porch that looks out over the lake. I can hardly wait to sit on the porch with a hot cup of coffee and enjoy the sunrise. Of course, they have the most awesome shops, and a fabulous Variety Show, which we will see while we’re there. I’m getting more excited just writing about it. Just a few more weeks!
TTFN!
Monday, October 25, 2010
Leave it to the Professionals!
I’ve never claimed to be a writer, although I do sometimes love to get my thoughts on paper. The other day Bob and I were on our way to work, and as we approached E’town, we could see and smell the smoke from the wildfires that took place in Fort Knox and Sonora. It was an eerie feeling as we drove through the smoke, so I wanted to try to capture it in writing. Well, I wrote my short descriptive story about our drive to work that morning, and I asked Andrew to take a look at it and let me know what he thought. Here’s my story:
"A pungent odor filled the air as we made our way down the WK Parkway this morning. A caliginous sky left us questioning the events of the previous evening. An old combine, with not enough grease on its bearings, had sparked a field of soy beans. What started as a small, containable fire rapidly grew into the area’s worst wild fire. Burning out of control, consuming acres and acres of soy bean field, the fire quickly approached the small community, threatening the homes and barns standing in its path. The quick response of the fire department, combined with the Forestry Department’s knowledge, and the local farmer’s tractors, brought the fire in control within hours. Throughout the night the fire was watched, with nervous hearts, to assure the wind didn’t stir the still burning embers.
This morning, making our way to work, we were witness to the remnants of the devastation. The air, thick with smoke, lingered throughout the town, creating an intense fog for the morning commute. The smell, lingering in the air, thick and heavy, bringing back childhood memories of our wood burning stove, was embedded deep in our nostrils."
I guess I should have known that a professional writer would rip it to shreds. LOL! Good thing I’m not sensitive to constructive criticism. Andrew replied with the following:
“Well, it needs a middle and an end. A story, for the most part, is about character, and what you have here, is a premise for a story. I need to see character(s) and what they learn, going back to the memory of a woodburning stove is good--but more specific, what does a wood-burning stove smell like to you--and I want to see more and more of this happening. And, on that note, leave out the Fire Dept, the Forest Dept. that its the area's biggest fire. That's exposition. Again, bring it back to characters. Or, make what you have much more concise, and create a metaphor for this fire and your memory, and really elaborate the images that are brought up, but conclude on something punchy...this could be a comment on something going up in smoke, an old flame, whatever, but it could be great. (The note about the combine is very beautiful :) )”
After giving me this tidbit of information, he went on to write how he thought I should have written the story. Here’s his version:
“The road was black as pitch for the furrows of smoke and ash like fat flakes of snow. In the distance, the waves of fire crop licked the sky, and the black clouds rolled up like burning wallpaper. There was a smell in my nostrils, one of kindling, an old wood-burning stove on a brick hearth in Winter. My eyes watered then as they do now, my second marriage the heavy cherry log that melts, melds with the soot. The soybean field smolders now, waiting for fairer weather to be burnt out.”
Talk about pencil envy! After reading his version, my sad little story didn’t seem fit, even for a children’s book. Also, do you know how long it would have taken me to come up with something like that! Not in my lifetime! LOL! Of course, I was only writing a short description of what we experienced, but Andrew, in his response, wanted me to make it into a story. There’s just not enough time in the world for me to come up with something like that…. I guess that’s where the saying “Leave it to the professionals” comes into play.
I’m very proud of Andrew, and truly welcome his input on my inadequate writing skills. I hope to see him published in the near future.
TTFN!
"A pungent odor filled the air as we made our way down the WK Parkway this morning. A caliginous sky left us questioning the events of the previous evening. An old combine, with not enough grease on its bearings, had sparked a field of soy beans. What started as a small, containable fire rapidly grew into the area’s worst wild fire. Burning out of control, consuming acres and acres of soy bean field, the fire quickly approached the small community, threatening the homes and barns standing in its path. The quick response of the fire department, combined with the Forestry Department’s knowledge, and the local farmer’s tractors, brought the fire in control within hours. Throughout the night the fire was watched, with nervous hearts, to assure the wind didn’t stir the still burning embers.
This morning, making our way to work, we were witness to the remnants of the devastation. The air, thick with smoke, lingered throughout the town, creating an intense fog for the morning commute. The smell, lingering in the air, thick and heavy, bringing back childhood memories of our wood burning stove, was embedded deep in our nostrils."
I guess I should have known that a professional writer would rip it to shreds. LOL! Good thing I’m not sensitive to constructive criticism. Andrew replied with the following:
“Well, it needs a middle and an end. A story, for the most part, is about character, and what you have here, is a premise for a story. I need to see character(s) and what they learn, going back to the memory of a woodburning stove is good--but more specific, what does a wood-burning stove smell like to you--and I want to see more and more of this happening. And, on that note, leave out the Fire Dept, the Forest Dept. that its the area's biggest fire. That's exposition. Again, bring it back to characters. Or, make what you have much more concise, and create a metaphor for this fire and your memory, and really elaborate the images that are brought up, but conclude on something punchy...this could be a comment on something going up in smoke, an old flame, whatever, but it could be great. (The note about the combine is very beautiful :) )”
After giving me this tidbit of information, he went on to write how he thought I should have written the story. Here’s his version:
“The road was black as pitch for the furrows of smoke and ash like fat flakes of snow. In the distance, the waves of fire crop licked the sky, and the black clouds rolled up like burning wallpaper. There was a smell in my nostrils, one of kindling, an old wood-burning stove on a brick hearth in Winter. My eyes watered then as they do now, my second marriage the heavy cherry log that melts, melds with the soot. The soybean field smolders now, waiting for fairer weather to be burnt out.”
Talk about pencil envy! After reading his version, my sad little story didn’t seem fit, even for a children’s book. Also, do you know how long it would have taken me to come up with something like that! Not in my lifetime! LOL! Of course, I was only writing a short description of what we experienced, but Andrew, in his response, wanted me to make it into a story. There’s just not enough time in the world for me to come up with something like that…. I guess that’s where the saying “Leave it to the professionals” comes into play.
I’m very proud of Andrew, and truly welcome his input on my inadequate writing skills. I hope to see him published in the near future.
TTFN!
Tuesday, October 19, 2010
What to do, what to do???
Now that we have doctor’s visits out of our schedules, life seems pretty calm. No appointments, not nearly as much worry, what do we do with ourselves? It feels like I have so much free time on my hands. Final diagnosis for Mya: None. We are in the wait and see if it happens again mode. Hopefully she never has another episode. I’m still left with the question of “If it happens again, then what?” I guess we’ll see.
Andrew and James will close on their house this week. I couldn’t be more excited for them! Andrew has plans drawn up of what he wants to do to the house as far as some small remodeling, and tons of decorating. I can’t wait to see the finished product! Of course, it will take place over time, and not happen over night. I know that disappoints Andrew. I think he gets his impatience from his Mum. LOL!
Bob and I are planning a Halloween party for the immediate family. Halloween is one of our favorite times of the year. The scarier we can get the house, the better! Of course, since we will have smaller kids at the party, we will keep the tricks as mild as possible. Don’t want to send anyone home with a permanent fear of the dark! LOL! I’ve got several games planned, as well as “hayride style” trick or treating through our neighborhood. I think the kids will have a great time!
There’s a lot of turmoil and chaos going on in the family right now. I have a feeling it’s going to make for a very awkward Christmas gathering. I hate it for Mom, and really wish everyone would come to their senses, but I don’t see it happening any time soon. Maybe, one day, people will grow up and realize the world doesn’t revolve around them alone. Sorry, I just had to get that out there, in case the right people are reading my blog. GROW UP AND GET OVER YOURSELF!
Work has been crazy busy this year. Based on our business you would never think we were in a recession. I hope it continues to boom through 2011 and beyond.
I’ve been thinking about a hobby, but can’t really decide what I would like to do that doesn’t require a huge investment. I used to love to scrapbook, but I just can’t seem to get in the right mind set to get started back on that road. I’ve tried the cooking thing, and that just wasn’t my cup of tea. I’ve been reading a lot lately, but I don’t really consider that a hobby, it’s more of my relaxation time. I’m looking for something to occupy my mind and hands. I’ve considered photography, and even have a make shift studio set up in the basement, but I can’t afford to get all the great pictures developed. LOL! I think it’s because I want a copy of all of them, and multiple copies to share. Although I love having a digital camera and the ability to sort out the crap, I don’t like the idea of not having a picture in my hand. I need to sort, look, rotate, and study my pictures to see which ones really capture what I see in the lens. I can’t do that with a digital without tons of development costs. There’s a wide variety of editing software out there, but like scrapbooking, I just can’t seem to get my mind focused on learning all the “tricks”. We have an editing program on our computer, but so far I’ve experienced some unwanted cropping when transferring my final masterpiece to a photo developing website, so I never use it. I can’t figure out why the software is cropping a huge portion of pictures during the transition. Maybe I need “Photo Editing for Dummies”! LOL!
TTFN!
Andrew and James will close on their house this week. I couldn’t be more excited for them! Andrew has plans drawn up of what he wants to do to the house as far as some small remodeling, and tons of decorating. I can’t wait to see the finished product! Of course, it will take place over time, and not happen over night. I know that disappoints Andrew. I think he gets his impatience from his Mum. LOL!
Bob and I are planning a Halloween party for the immediate family. Halloween is one of our favorite times of the year. The scarier we can get the house, the better! Of course, since we will have smaller kids at the party, we will keep the tricks as mild as possible. Don’t want to send anyone home with a permanent fear of the dark! LOL! I’ve got several games planned, as well as “hayride style” trick or treating through our neighborhood. I think the kids will have a great time!
There’s a lot of turmoil and chaos going on in the family right now. I have a feeling it’s going to make for a very awkward Christmas gathering. I hate it for Mom, and really wish everyone would come to their senses, but I don’t see it happening any time soon. Maybe, one day, people will grow up and realize the world doesn’t revolve around them alone. Sorry, I just had to get that out there, in case the right people are reading my blog. GROW UP AND GET OVER YOURSELF!
Work has been crazy busy this year. Based on our business you would never think we were in a recession. I hope it continues to boom through 2011 and beyond.
I’ve been thinking about a hobby, but can’t really decide what I would like to do that doesn’t require a huge investment. I used to love to scrapbook, but I just can’t seem to get in the right mind set to get started back on that road. I’ve tried the cooking thing, and that just wasn’t my cup of tea. I’ve been reading a lot lately, but I don’t really consider that a hobby, it’s more of my relaxation time. I’m looking for something to occupy my mind and hands. I’ve considered photography, and even have a make shift studio set up in the basement, but I can’t afford to get all the great pictures developed. LOL! I think it’s because I want a copy of all of them, and multiple copies to share. Although I love having a digital camera and the ability to sort out the crap, I don’t like the idea of not having a picture in my hand. I need to sort, look, rotate, and study my pictures to see which ones really capture what I see in the lens. I can’t do that with a digital without tons of development costs. There’s a wide variety of editing software out there, but like scrapbooking, I just can’t seem to get my mind focused on learning all the “tricks”. We have an editing program on our computer, but so far I’ve experienced some unwanted cropping when transferring my final masterpiece to a photo developing website, so I never use it. I can’t figure out why the software is cropping a huge portion of pictures during the transition. Maybe I need “Photo Editing for Dummies”! LOL!
TTFN!
Monday, September 27, 2010
How do you spell relief! E-K-G
Great news! We just got back from the Cardiologist and everything is fine with Mya's heart! She does have the small hole, but nothing that will require surgery, or even follow up visits with the Cardiologist!
It was listed on Mya's paperwork that she had Long QT, but the doctor couldn't figure out why. While we were there, they did another EKG and Echo, and both showed her heart to be functioning perfectly. The doctor looked at the results from her previous tests, and said those looked good as well. It's a mystery to everyone as to why that was put on her paperwork.
Bob and I are both extremely relieved to get this news. It's caused a lot (and that's an understatement) of unnecessary stress this past week, but we're so grateful to find out everything is fine.
We're scheduled to see the Neurologist again, on Thursday. Depending on what he says, and now that we know it's not a life threatening thing, we may just opt for the wait and see approach. Maybe this is something she will outgrow.
We want to thank everyone for their well wishes, prayers and support! It means a lot to us!
TTFN!
It was listed on Mya's paperwork that she had Long QT, but the doctor couldn't figure out why. While we were there, they did another EKG and Echo, and both showed her heart to be functioning perfectly. The doctor looked at the results from her previous tests, and said those looked good as well. It's a mystery to everyone as to why that was put on her paperwork.
Bob and I are both extremely relieved to get this news. It's caused a lot (and that's an understatement) of unnecessary stress this past week, but we're so grateful to find out everything is fine.
We're scheduled to see the Neurologist again, on Thursday. Depending on what he says, and now that we know it's not a life threatening thing, we may just opt for the wait and see approach. Maybe this is something she will outgrow.
We want to thank everyone for their well wishes, prayers and support! It means a lot to us!
TTFN!
Tuesday, September 21, 2010
Nervous Nellies! That's what we are!
As you know we took Mya to Kosair on Friday, August 27th, to have an Echo and an EEG. The results of the EEG were normal, but when I spoke with the doctor about the Echo, he said it shows that Mya has a hole in her heart. The doctor assured us this was not a life threatening thing, and it's quite common (not that it makes us feel good about the news!). We will see a Pediatric Cardiologist on September 27th so they can review the results, and I'm sure do further testing on her heart, and see where we go from there.
The Pediatrician also stressed, over and over, that the hole in her heart has nothing to do with the "seizure" episodes Mya has been having.
This is what we were dealing with the past few weeks. Not getting overly excited, knowing it was easily fixable.
Well, yesterday I "accidentally" found out more about Mya's test results. On Saturday I received the paperwork to fill out for the Cardio doctor. On the paperwork, it asked that I call to confirm, and it also stated that I needed to bring in all the test results from Mya's previous tests. Well, when I called to confirm, and also to make sure the Pediatrician had sent all the test results, the lady started going through paperwork and reading off which test results she had, and what each one showed. She got to either the EKG, or the Echo (I can’t remember which), and said, "here are these results with a diagnosis of Long QT Syndrome". I said, excuse me, and then proceeded to question the diagnosis of Long QT. Yes, the test showed she has Long QT Syndrome. No one had told us any of the results show Long QT. I can only assume, since the Pediatrician stressed over and over that her syncope and seizures had nothing to do with the hole in her heart, that they preferred to let the Cardio doctor give us Long QT results and explain things face to face, rather than the nurse trying to explain on the phone. At least I hope that’s the case, otherwise, we’re going to start questioning whether or not we’re with the right Pediatrician.
I'm attaching, below, a link that explains a little about Long QT Syndrome. To be honest, this scares me more than the hole in her heart. Everything I’ve read seems to lead to the severity of possible cardiac arrest. However, after reading the article below, it does answer a lot of questions as why things were happening to Mya the way they did. On the flip side, now that we think back, knowing she’s had the “fainting spells” since she was a year old, she could have gone into cardiac arrest at any point in her life and we wouldn’t have known why until it was too late. What’s even more scary is that she started out with only the fainting spells, and those graduated into fainting spells with seizures to follow. Now we're even more anxious to see the Cardio doctor on Monday.
http://www.bing.com/health/article/mayo-126133/Long-QT-syndrome?q=long+qt+syndrome&qpvt=long+qt
More to come next week after we see the Cardiologist!
TTFN!
The Pediatrician also stressed, over and over, that the hole in her heart has nothing to do with the "seizure" episodes Mya has been having.
This is what we were dealing with the past few weeks. Not getting overly excited, knowing it was easily fixable.
Well, yesterday I "accidentally" found out more about Mya's test results. On Saturday I received the paperwork to fill out for the Cardio doctor. On the paperwork, it asked that I call to confirm, and it also stated that I needed to bring in all the test results from Mya's previous tests. Well, when I called to confirm, and also to make sure the Pediatrician had sent all the test results, the lady started going through paperwork and reading off which test results she had, and what each one showed. She got to either the EKG, or the Echo (I can’t remember which), and said, "here are these results with a diagnosis of Long QT Syndrome". I said, excuse me, and then proceeded to question the diagnosis of Long QT. Yes, the test showed she has Long QT Syndrome. No one had told us any of the results show Long QT. I can only assume, since the Pediatrician stressed over and over that her syncope and seizures had nothing to do with the hole in her heart, that they preferred to let the Cardio doctor give us Long QT results and explain things face to face, rather than the nurse trying to explain on the phone. At least I hope that’s the case, otherwise, we’re going to start questioning whether or not we’re with the right Pediatrician.
I'm attaching, below, a link that explains a little about Long QT Syndrome. To be honest, this scares me more than the hole in her heart. Everything I’ve read seems to lead to the severity of possible cardiac arrest. However, after reading the article below, it does answer a lot of questions as why things were happening to Mya the way they did. On the flip side, now that we think back, knowing she’s had the “fainting spells” since she was a year old, she could have gone into cardiac arrest at any point in her life and we wouldn’t have known why until it was too late. What’s even more scary is that she started out with only the fainting spells, and those graduated into fainting spells with seizures to follow. Now we're even more anxious to see the Cardio doctor on Monday.
http://www.bing.com/health/article/mayo-126133/Long-QT-syndrome?q=long+qt+syndrome&qpvt=long+qt
More to come next week after we see the Cardiologist!
TTFN!
Wednesday, August 25, 2010
Another Day, Another Test
Today we go for more testing on Mya. The tests today will check her heart and heart function. Since the people at Kosair mentioned heart tests on several different occasions, we brought our concerns to the doctor’s attention. Based on Mya’s last episode, the doctor seems to think that Mya is having seizures, but she wants to rule out heart problems, and also sleep apnea. The last seizure happened through the night, and if it was brought on from breath holding due to sleep apnea, the doctor would be thankful. We’re not real clear on what the heart would have to do with seizures, but I’m anxious to rule out any heart problems.
We did take Mya to see the sleep specialist, and let me tell you, that was an interesting visit. Just imagine, when you walk into the room at the doctor’s office, what it looks like, the table with the paper draped over it, the sink, and all the scopes used for looking in the ears and throat. Well, at the sleep doctor, the room is actually a bedroom. I think my jaw dropped when we entered the room. It was nicely decorated with low lights, decorative pillows laying at the head of the queen size bed, a nice big recliner, TV, end tables, and all the makings of a bedroom. I have to give the decorator kudos; it was a nice relaxing environment. Bob and I sat on the recliner, and the doctor sat on the bed. Of course, we had to hear a lecture on sleep, sleeping patterns, and the importance of sleep. The doctor was very monotone, so it was hard for me to pay attention, especially with such an inviting looking bed. LOL! I’m joking. Personally, I didn’t care for the doctor at all. He was very condescending when speaking to us about Mya’s sleeping habits. He asked about her bedtime, as well as what time she gets up in the morning. I told him (she sleeps about 8 to 9 hours through the night). His response was, “now, do you think that’s enough sleep for a 4 year old?” I told him I didn’t think she had any issues. I got the look! I proceeded to tell him that she takes a 2 to 3 hour nap pretty much everyday. I was still getting the look. This doctor told us he thinks Mya is chronically sleep deprived. I’m thinking if he wants to see sleep deprived, he needs to ask about my sleeping patterns. Seriously! LOL! Anyway, we are scheduled to take Mya for a sleep study on the 9th, but I’m really not convinced she has apnea. We were sent home with a brochure that talks about apnea and the signs and symptoms, and other than snoring, Mya exhibits no symptoms. Even her snoring isn’t the choke and gag type snoring he was describing, it’s just normal snoring. That test may be ruled out!
On Friday we will take Mya back to Kosair for an EEG. If she’s having seizures, the Neurologist is hoping to catch the activity on the test. It’s really bothersome to me because we’ve had so many tests, and the Neurologist is ready to diagnose her with seizure disorder, or epilepsy, based solely on what we’ve told him, and put her on medication. Bob and I aren’t ready to commit to a lifetime of medication for our 4 year old. Of course, if the EEG shows the seizure activity, we will do everything needed to assure the seizures are controlled. On the flip side, if all the testing comes back normal, we’re back to “what’s causing the fainting, seizures and memory loss”?
When we speak of Mya’s memory loss, we’re not talking about her having no memory of the seizure’s, we’re talking about her losing an entire day’s worth of memory, or at least 6 to 8 hours prior to the seizure. As a mom, that’s scary. We know Mya is a bright child, and we know that she doesn’t forget anything, so when she’s not able to remember what happened the evening prior to the seizure, something isn’t right. Especially if it was a significant evening, not just an evening at home watching cartoons. My biggest concern is what this will do her learning development during her school years. Based on the past episodes, she would lose an entire days instruction if she had a seizure after school one day. I guess we’ll take what’s given to us and handle it the best we can.
We had another scare in the family. My brother, Joe, who was diagnosed several years ago with melanoma cancer, had a place come up on his head. The spot that came up was on the rim of the “hole” he has on the side of his head from the original cancer removal. Thankfully, he took immediate action and went to the doctor to have it checked out. It was nothing to be concerned about. The doctor checked him from head to toe and said he looks great! Wonderful news! The doctor did stress, since Joe is coming up on his 5 year milestone, he would like for him to have a PET scan done so they can catch anything that might be microscopic in size. Joe will schedule that and we’ll all keep our fingers crossed for the best.
Andrew and James put in a bid on a house yesterday, so that’s exciting news! I hope they are able to get a home of their own. The apartment they live in hasn’t been as nice as originally perceived. As with any apartment rental, they’ve had their share of problems. Now they know why the rent was a lot cheaper for the size of apartment they leased.
For Andrew’s MFA at Murray, he will still spend a couple of weeks, a couple of times a year, at Murray State, which isn’t bad. I was really pleased to hear that Andrew wouldn’t be moving to Murray. I can hardly wait to see something complete that Andrew has written. I’ve read a few of Andrew’s stories, but none of them have been complete, so I was left hanging for the outcome. The plans for the book to be published with Nickole Brown have been delayed to 2011. I was so hoping they would be able to complete that this year. I’ll patiently await its release!
I’ll have test results, and hopefully good news to post within the next week or so.
TTFN!
We did take Mya to see the sleep specialist, and let me tell you, that was an interesting visit. Just imagine, when you walk into the room at the doctor’s office, what it looks like, the table with the paper draped over it, the sink, and all the scopes used for looking in the ears and throat. Well, at the sleep doctor, the room is actually a bedroom. I think my jaw dropped when we entered the room. It was nicely decorated with low lights, decorative pillows laying at the head of the queen size bed, a nice big recliner, TV, end tables, and all the makings of a bedroom. I have to give the decorator kudos; it was a nice relaxing environment. Bob and I sat on the recliner, and the doctor sat on the bed. Of course, we had to hear a lecture on sleep, sleeping patterns, and the importance of sleep. The doctor was very monotone, so it was hard for me to pay attention, especially with such an inviting looking bed. LOL! I’m joking. Personally, I didn’t care for the doctor at all. He was very condescending when speaking to us about Mya’s sleeping habits. He asked about her bedtime, as well as what time she gets up in the morning. I told him (she sleeps about 8 to 9 hours through the night). His response was, “now, do you think that’s enough sleep for a 4 year old?” I told him I didn’t think she had any issues. I got the look! I proceeded to tell him that she takes a 2 to 3 hour nap pretty much everyday. I was still getting the look. This doctor told us he thinks Mya is chronically sleep deprived. I’m thinking if he wants to see sleep deprived, he needs to ask about my sleeping patterns. Seriously! LOL! Anyway, we are scheduled to take Mya for a sleep study on the 9th, but I’m really not convinced she has apnea. We were sent home with a brochure that talks about apnea and the signs and symptoms, and other than snoring, Mya exhibits no symptoms. Even her snoring isn’t the choke and gag type snoring he was describing, it’s just normal snoring. That test may be ruled out!
On Friday we will take Mya back to Kosair for an EEG. If she’s having seizures, the Neurologist is hoping to catch the activity on the test. It’s really bothersome to me because we’ve had so many tests, and the Neurologist is ready to diagnose her with seizure disorder, or epilepsy, based solely on what we’ve told him, and put her on medication. Bob and I aren’t ready to commit to a lifetime of medication for our 4 year old. Of course, if the EEG shows the seizure activity, we will do everything needed to assure the seizures are controlled. On the flip side, if all the testing comes back normal, we’re back to “what’s causing the fainting, seizures and memory loss”?
When we speak of Mya’s memory loss, we’re not talking about her having no memory of the seizure’s, we’re talking about her losing an entire day’s worth of memory, or at least 6 to 8 hours prior to the seizure. As a mom, that’s scary. We know Mya is a bright child, and we know that she doesn’t forget anything, so when she’s not able to remember what happened the evening prior to the seizure, something isn’t right. Especially if it was a significant evening, not just an evening at home watching cartoons. My biggest concern is what this will do her learning development during her school years. Based on the past episodes, she would lose an entire days instruction if she had a seizure after school one day. I guess we’ll take what’s given to us and handle it the best we can.
We had another scare in the family. My brother, Joe, who was diagnosed several years ago with melanoma cancer, had a place come up on his head. The spot that came up was on the rim of the “hole” he has on the side of his head from the original cancer removal. Thankfully, he took immediate action and went to the doctor to have it checked out. It was nothing to be concerned about. The doctor checked him from head to toe and said he looks great! Wonderful news! The doctor did stress, since Joe is coming up on his 5 year milestone, he would like for him to have a PET scan done so they can catch anything that might be microscopic in size. Joe will schedule that and we’ll all keep our fingers crossed for the best.
Andrew and James put in a bid on a house yesterday, so that’s exciting news! I hope they are able to get a home of their own. The apartment they live in hasn’t been as nice as originally perceived. As with any apartment rental, they’ve had their share of problems. Now they know why the rent was a lot cheaper for the size of apartment they leased.
For Andrew’s MFA at Murray, he will still spend a couple of weeks, a couple of times a year, at Murray State, which isn’t bad. I was really pleased to hear that Andrew wouldn’t be moving to Murray. I can hardly wait to see something complete that Andrew has written. I’ve read a few of Andrew’s stories, but none of them have been complete, so I was left hanging for the outcome. The plans for the book to be published with Nickole Brown have been delayed to 2011. I was so hoping they would be able to complete that this year. I’ll patiently await its release!
I’ll have test results, and hopefully good news to post within the next week or so.
TTFN!
Friday, August 13, 2010
Racism and Prejudice At An Early Age
For this post, I’m not sure if the correct term to use is racism, or prejudice, so I'll give the definition of both.
Racism: 1. a belief or doctrine that inherent differences among the various human races determine cultural or individual achievement, usually involving the idea that one's own race is superior and has the right to rule others. 2. a policy, system of government, etc., based upon or fostering such a doctrine; discrimination.
3. hatred or intolerance of another race or other races.
Prejudice: 1. an unfavorable opinion or feeling formed beforehand or without knowledge, thought, or reason.
2. any preconceived opinion or feeling, either favorable or unfavorable.
3. unreasonable feelings, opinions, or attitudes, esp. of a hostile nature, regarding a racial, religious, or national group. 4. such attitudes considered collectively: The war against prejudice is never-ending.
5. damage or injury; detriment: a law that operated to the prejudice of the majority.
Maybe both definitions apply, but for this post, I’m going to use racism when telling my sisters story.
My sister had to take her daughter to the doctor yesterday. I won’t go into the details of why, but it turned out they ended up sitting in the waiting room for hours. When I spoke with my sister, she said that she just can’t get over the people you meet when you’re in a public place. She went on to tell me what happened in the waiting room.
In the waiting room, there was my sister and her family, a family of color that we’ll call Family A, another family of color that we’ll call Family B, a white family, and a family, as my sister described, from Middle Eastern descent. Family A had several children, one boy being very young, and all the kids were playing and behaving themselves quite well. The young boy approached my sister and started talking to her in his toddler jabber, and my sister, being polite and knowing how toddlers like to chatter, tried to carry on the conversation. Out of the blue the little boy looked at my sister and said, “You’re a white bitch!” My sister didn’t know what to say! However, the lady sitting beside her, from Family B, didn’t care to speak her mind. The lady looked at my sister in total disbelief and said, “Can you believe that?”, then turned to the toddler’s dad and asked the age of the boy. He’s 2. The lady from Family B just couldn’t contain her anger. She looked at my sister and said, “He’s 2, now can you believe that!” Then she turned on the dad. She told the dad that he needed to send that boy to live with her for a while, “I’d break him from that cussing real quick!” she shouted, for everyone in the waiting room to hear. The dad, being embarrassed, called the boy over, put him on his lap and proceeded to tap his little mouth, as punishment for what he had done. After tapping his mouth, the dad then apologized to THE LITTLE BOY! The lady from Family B just about came unglued! She looked at that dad and told him how he didn’t need to be apologizing to that boy, and just on and on and on. My sister just sat there in total shock over the entire ordeal.
Okay, later on, while still waiting to be seen, another child from Family A, and the son from the white family were playing. My sister said she figured they were around 6 or 7 years old. The two boys, one white and one of color, were playing with a toy that either belonged to one of the boys, or was a toy they have in the waiting room at this office, I’m not sure which, but they were playing fine when all of a sudden, the little boy of color took the toy and triumphantly announced to the white boy that he could no longer touch the toy. “I’m the king, and you’re no longer allowed to touch the King’s toy!” The white boy just looked at him and said, “You’re not a king.” The boy of color says, “Yes, I’m the king, I’m Obama, you can call me King Obama!” The white boy, in reply, says, “My dad said Obama is the President, and he’s a ni**er!” My sister about fell out of her seat! Other than the white dad being thoroughly embarrassed, my sister didn’t say if words were exchanged between the dads. And, the lady from Family B wasn’t there to witness what had just happened.
I can only imagine this scene in my head. I couldn’t believe what my sister was telling me. This incident tells me that we’re teaching our children, at a very young age, to be racist. I know that none of those children would have said what they did, had they not heard it at home. Racism and prejudice are taught at an early age. I guess there might be circumstances, when you’re older, that a tragic experience might leave you feeling biased, but what these kids were saying was taught.
When we were growing up, using the “N” word was just as bad as any curse word you could think of. We weren’t taught to hate, or even dislike, someone that might be different. I can’t imagine teaching my children to dislike someone of a different race, religion, etc. I was under the impression that we were starting to get past the differences, but after hearing this, it tells me that we’ll always have generation after generation of racism and prejudice. Maybe I’m just naïve.
My sister went on to tell me that the white family appeared to be very “redneck” in their ways. I guess after their sons comment, one can agree. The man of Middle Eastern descent approached the white family, only to discuss their children’s common issues at hand, and the white lady was very rude to the man. She wouldn’t look in his direction, and wouldn’t speak to him to answer his questions. As Stacey put it, “she’s was just out and out rude and made no qualms about it.” Since this office was a Pediatric Orthopedic Specialist, all the parents in the waiting area had children with orthopedic issues of one form or another. I’m sure the Middle Eastern man was just trying to strike up a conversation to discuss what issues they were having with their child to compare to what they were experiencing with theirs. The white lady snubbed him completely. The guy finally said, “I guess it’s just trying times for us all”, and left it at that.
I think it’s sad to hear stories like this. Maybe, as a Libra, I just want peace and harmony all around. One can always hope!
TTFN!
Racism: 1. a belief or doctrine that inherent differences among the various human races determine cultural or individual achievement, usually involving the idea that one's own race is superior and has the right to rule others. 2. a policy, system of government, etc., based upon or fostering such a doctrine; discrimination.
3. hatred or intolerance of another race or other races.
Prejudice: 1. an unfavorable opinion or feeling formed beforehand or without knowledge, thought, or reason.
2. any preconceived opinion or feeling, either favorable or unfavorable.
3. unreasonable feelings, opinions, or attitudes, esp. of a hostile nature, regarding a racial, religious, or national group. 4. such attitudes considered collectively: The war against prejudice is never-ending.
5. damage or injury; detriment: a law that operated to the prejudice of the majority.
Maybe both definitions apply, but for this post, I’m going to use racism when telling my sisters story.
My sister had to take her daughter to the doctor yesterday. I won’t go into the details of why, but it turned out they ended up sitting in the waiting room for hours. When I spoke with my sister, she said that she just can’t get over the people you meet when you’re in a public place. She went on to tell me what happened in the waiting room.
In the waiting room, there was my sister and her family, a family of color that we’ll call Family A, another family of color that we’ll call Family B, a white family, and a family, as my sister described, from Middle Eastern descent. Family A had several children, one boy being very young, and all the kids were playing and behaving themselves quite well. The young boy approached my sister and started talking to her in his toddler jabber, and my sister, being polite and knowing how toddlers like to chatter, tried to carry on the conversation. Out of the blue the little boy looked at my sister and said, “You’re a white bitch!” My sister didn’t know what to say! However, the lady sitting beside her, from Family B, didn’t care to speak her mind. The lady looked at my sister in total disbelief and said, “Can you believe that?”, then turned to the toddler’s dad and asked the age of the boy. He’s 2. The lady from Family B just couldn’t contain her anger. She looked at my sister and said, “He’s 2, now can you believe that!” Then she turned on the dad. She told the dad that he needed to send that boy to live with her for a while, “I’d break him from that cussing real quick!” she shouted, for everyone in the waiting room to hear. The dad, being embarrassed, called the boy over, put him on his lap and proceeded to tap his little mouth, as punishment for what he had done. After tapping his mouth, the dad then apologized to THE LITTLE BOY! The lady from Family B just about came unglued! She looked at that dad and told him how he didn’t need to be apologizing to that boy, and just on and on and on. My sister just sat there in total shock over the entire ordeal.
Okay, later on, while still waiting to be seen, another child from Family A, and the son from the white family were playing. My sister said she figured they were around 6 or 7 years old. The two boys, one white and one of color, were playing with a toy that either belonged to one of the boys, or was a toy they have in the waiting room at this office, I’m not sure which, but they were playing fine when all of a sudden, the little boy of color took the toy and triumphantly announced to the white boy that he could no longer touch the toy. “I’m the king, and you’re no longer allowed to touch the King’s toy!” The white boy just looked at him and said, “You’re not a king.” The boy of color says, “Yes, I’m the king, I’m Obama, you can call me King Obama!” The white boy, in reply, says, “My dad said Obama is the President, and he’s a ni**er!” My sister about fell out of her seat! Other than the white dad being thoroughly embarrassed, my sister didn’t say if words were exchanged between the dads. And, the lady from Family B wasn’t there to witness what had just happened.
I can only imagine this scene in my head. I couldn’t believe what my sister was telling me. This incident tells me that we’re teaching our children, at a very young age, to be racist. I know that none of those children would have said what they did, had they not heard it at home. Racism and prejudice are taught at an early age. I guess there might be circumstances, when you’re older, that a tragic experience might leave you feeling biased, but what these kids were saying was taught.
When we were growing up, using the “N” word was just as bad as any curse word you could think of. We weren’t taught to hate, or even dislike, someone that might be different. I can’t imagine teaching my children to dislike someone of a different race, religion, etc. I was under the impression that we were starting to get past the differences, but after hearing this, it tells me that we’ll always have generation after generation of racism and prejudice. Maybe I’m just naïve.
My sister went on to tell me that the white family appeared to be very “redneck” in their ways. I guess after their sons comment, one can agree. The man of Middle Eastern descent approached the white family, only to discuss their children’s common issues at hand, and the white lady was very rude to the man. She wouldn’t look in his direction, and wouldn’t speak to him to answer his questions. As Stacey put it, “she’s was just out and out rude and made no qualms about it.” Since this office was a Pediatric Orthopedic Specialist, all the parents in the waiting area had children with orthopedic issues of one form or another. I’m sure the Middle Eastern man was just trying to strike up a conversation to discuss what issues they were having with their child to compare to what they were experiencing with theirs. The white lady snubbed him completely. The guy finally said, “I guess it’s just trying times for us all”, and left it at that.
I think it’s sad to hear stories like this. Maybe, as a Libra, I just want peace and harmony all around. One can always hope!
TTFN!
Thursday, August 5, 2010
Mya's MRI Results
First things first, Mya’s MRI came back normal! We are so thankful for those results. However, while we were at Kosair, the good people up there left the question in our minds as to why they haven't checked Mya's heart. At least 3 different people questioned us about her "heart tests", which she has not had. One lady even stated, "She’s having this problem, and they haven't checked her heart?" So, now we have to wonder about that. In the mean time the doctor has told us to call them immediately if she has another episode and they will run an EEG to monitor for seizure activity. We're discussing what we should do as far as approaching the doctor about the heart stuff.
Last night, when putting Mya’s pajamas on her, I noticed a terrible looking rash on her chest. The discharge papers from Kosair said that we should contact our pediatrician immediately, call 911 or take her to the nearest emergency room if she develops a rash. We weren’t sure if a reaction to the MRI contrast would develop a rash at this point (it had been more then 24 hours since the test), so I called Kosair, Care First, and then the local hospital, trying to get someone to tell me whether or not we should panic be concerned. The lady at Care First said the contrast, being put in an IV, is in her blood system, and could cause an allergic reaction at various times. She advised we take her to the ER since the rash could quickly turn into Anaphylactic Shock. To make a long story short, after several phone calls, we ended up at the ER to have the rash evaluated. It was a simple allergic rash, to something, but not the MRI contrast. The doctor at the ER told us, had it been a reaction to the contrast, she would have had problems within a few hours. Bob and I thought that might be the case, but after the Anaphylactic Shock comment, we didn’t want to take any chances.
While at the ER, with a doctor face to face, and not a nurse on the phone, I took the opportunity to ask about Mya’s passing out, seizure episodes, memory loss and why Kosair kept referring to the heart tests. Should we push the heart tests on her doctor? Should we be overly concerned that she might have a heart defect? The ER doctor told us that we should probably approach our pediatrician and let her know our concerns. Bob seems to think we should wait until she has another episode and follow the doctor’s instructions. I’m still torn. While I’m extremely worried there could be an underlying condition, I don’t want to put Mya through a bunch of testing that might otherwise prove to be unnecessary. The episodes are so scary, and I would love to be able to find out what’s wrong and hopefully prevent another one. As a Mom, and you moms out there know how it is, you know when something isn’t right with your kids. In Mya’s case, I know she doesn’t forget anything, not even the smallest details, so for her to be having the seizure like episodes, and losing almost an entire day’s worth of memory, tells me these are more than just passing out spells. Oh, I forgot to mention above, the pediatrician has diagnosed her “episodes” as Syncope, which is considered to be “fainting spells”. I’m not so convinced, yet I can’t decide what to do. I don’t want to come off as a Munenhauser mom (just a little humor), but this really worries me.
On a different note, my brother was admitted to Life Springs yesterday. The doctor said he is suffering from severe depression. I just hate this, and I feel so helpless. Joe has been through so much in the past 5 years. His battle with cancer, and not being able to afford to complete his chemo treatment, losing everything, and now going through some personal issues, I can see why he’s having problems. I wish he would have talked to someone sooner, and not let himself get this point. I’ve never seen this side of my brother. He’s always been so laid back and easy going. I wish there was something I could say or do to help him. I hope he gets the help he needs. I’m just thankful that he asked for help.
As usual, it’s never a dull moment in our family!
TTFN!
Last night, when putting Mya’s pajamas on her, I noticed a terrible looking rash on her chest. The discharge papers from Kosair said that we should contact our pediatrician immediately, call 911 or take her to the nearest emergency room if she develops a rash. We weren’t sure if a reaction to the MRI contrast would develop a rash at this point (it had been more then 24 hours since the test), so I called Kosair, Care First, and then the local hospital, trying to get someone to tell me whether or not we should panic be concerned. The lady at Care First said the contrast, being put in an IV, is in her blood system, and could cause an allergic reaction at various times. She advised we take her to the ER since the rash could quickly turn into Anaphylactic Shock. To make a long story short, after several phone calls, we ended up at the ER to have the rash evaluated. It was a simple allergic rash, to something, but not the MRI contrast. The doctor at the ER told us, had it been a reaction to the contrast, she would have had problems within a few hours. Bob and I thought that might be the case, but after the Anaphylactic Shock comment, we didn’t want to take any chances.
While at the ER, with a doctor face to face, and not a nurse on the phone, I took the opportunity to ask about Mya’s passing out, seizure episodes, memory loss and why Kosair kept referring to the heart tests. Should we push the heart tests on her doctor? Should we be overly concerned that she might have a heart defect? The ER doctor told us that we should probably approach our pediatrician and let her know our concerns. Bob seems to think we should wait until she has another episode and follow the doctor’s instructions. I’m still torn. While I’m extremely worried there could be an underlying condition, I don’t want to put Mya through a bunch of testing that might otherwise prove to be unnecessary. The episodes are so scary, and I would love to be able to find out what’s wrong and hopefully prevent another one. As a Mom, and you moms out there know how it is, you know when something isn’t right with your kids. In Mya’s case, I know she doesn’t forget anything, not even the smallest details, so for her to be having the seizure like episodes, and losing almost an entire day’s worth of memory, tells me these are more than just passing out spells. Oh, I forgot to mention above, the pediatrician has diagnosed her “episodes” as Syncope, which is considered to be “fainting spells”. I’m not so convinced, yet I can’t decide what to do. I don’t want to come off as a Munenhauser mom (just a little humor), but this really worries me.
On a different note, my brother was admitted to Life Springs yesterday. The doctor said he is suffering from severe depression. I just hate this, and I feel so helpless. Joe has been through so much in the past 5 years. His battle with cancer, and not being able to afford to complete his chemo treatment, losing everything, and now going through some personal issues, I can see why he’s having problems. I wish he would have talked to someone sooner, and not let himself get this point. I’ve never seen this side of my brother. He’s always been so laid back and easy going. I wish there was something I could say or do to help him. I hope he gets the help he needs. I’m just thankful that he asked for help.
As usual, it’s never a dull moment in our family!
TTFN!
Friday, July 30, 2010
Gulf Shores in June
All in all, I'm glad we kept our reservations and went to Gulf Shores.
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