Well, let's see... I'm on dose 4 of Nortriptyline for the new ball and chain in my life, fibromyalgia. I wouldn't say life is better per se, just a little different. I know, I know. I'm only on day 4. I need to give it time to build to a therapeutic level.
Some days have been good and some days have been meh. I'm lucky that so far I haven't really felt any adverse reactions from the medication except for a mild dizziness at times. I did have some nausea this morning but very mild in comparison to what I normally have been feeling every morning for almost a year now.
Yesterday and today my knees are bothering me, and I was unable to make it up the stairs to wake my daughters up for school today. Luckily I was able to coax my oldest out of bed by telling her I couldn't come up this morning.
Otherwise I have hours where I feel pretty good overall. Then I will have a chunk of time where I ache, but not severe pain in more than 6-7 spots like before I started this medication. For the most part I'm back to having 3-4 level pain (out of 10) at times in several spots of my body, but I have been living with that for many years so it's manageable.
Emotionally I feel very isolated, I have had a few people tell me they are available if I need to talk. As with the pain of my childhood, I know from experience that my life is unrelatable for the most part. I have struggled with having been physically and mentally abused by my mother, sexually abused by my father, infertility...
I understand that most people cannot grasp what I explain. I get the general feeling that the things in my past are too crazy, too horrific for most people... and fibromyalgia has made me feel this way once again.
In the end, people ask the questions but rarely really want to hear the answers. So I have learned to plaster on a happy face. Not many people get to see behind the curtain to the real me which is fluffed, powdered and painted for the general masses... for public consumption. I self deprecate and joke to hide my pain, but I have been doing this for so long it is my song and dance, my vaudeville production. I find myself hovering just at the edge of despair and try to go about my day as I would have before my pain was given a name.
What I find hilarious on a cosmic level is this: I have for many, many years swallowed my pain, distracted myself from the depths of depression, avoided "professional help" because I do not want to be lumped in with the likes of my mother. I do not want to be diagnosed with mental illness. I do not want to be told I have problems and that I need to be on medication. I most certainly have never wanted to walk around in a drug induced haze to numb the pain.
And yet here I am... on an antidepressant for this. I have laughed bitterly about this to myself. I can do nothing but cry out to God for some sort of solace and relief, and even though I know ( and have known in my 42 years, and the knowing has kept me from falling into the blackest of depressions) that there are all sorts of people out there in this world- especially little ones- that are going through so much worse than what I have experienced in my life.
It makes me sad and thankful. It makes me pray on occasion, especially when I happen to hear the unspeakable things going on outside my little bubble.
It brings me to my knees and I thank God for the breath I draw, for this life that I have, for a man that loves me even though I have fallen short in so many ways, for children that I was told I would never have.
So excuse me for a moment, pardon my dust while I sort through the storm. I will find a place of quiet safety, I will be glad for all that I have... mostly. :) It's not going to be rainbows and Disney animals all the time folks but even now I am swimming my way to the surface for a breath of air.
Excuse me while I let love and light build to therapeutic levels.
I am still trying to change my point of view, one positive thought at a time.
Showing posts with label dealing with illness. Show all posts
Showing posts with label dealing with illness. Show all posts
Tuesday, April 17, 2012
Wednesday, April 11, 2012
I passed the test...Do I get a prize?
Today I had my doctors appointment, and let me first say that I am so blessed to have a family doc that listens and does not patronize me. He truly cares. I suppose it helps that he and John go to the same men's group at church on Saturdays and that they are kind of friends.
Knowing me and my medical history can be overwhelming so I took some time this morning to type up a brief history of complaints specifically related to what I think is going on with me. Call it OCD, call it odd... You would be right. I am nothing if not prepared.
After listening to me, and letting me know he had read my semi-exhausting exhaustive history, he told me that there were pressure points he wanted to check. I nodded in agreement, wincing internally, already knowing where those points were from my Google searches on Fibromyalgia.
It went a little something like this:
Doc, while pressing on my hips: Here...
Me: Yeh-ESSS!!!
Doc, pressing my lower back: Herrrrre...
Me: YUP!!!!!
Doc, pressing my right inner elbow: HERRREEE...
Me: Ummmm no...
Doc: Really? *he moves his fingers slightly*
Me: OK. Yes. YESSS!! YUUUUUUUP!!! *begging and pleading with my eyes and inflection for him to stop*
It went on like this until he had checked all 18 points, apologizing profusely as he went. He then told me that I had all 18 out of 18. My doc told me, "Yes, I believe you do have Fibromyalgia. You have all the classic symptoms."
He wants to try the lowest dose of Nortriptyline one pill at bed time, then to see me in 4 weeks.
Having been a nurse I already knew that serotonin plays a big part in a lot of disorders and illnesses like OCD, depression, altered pain pathways and excessive pain. I also already knew that depression meds have been helpful in these instances so I was not surprised to find that I would be on a med that was normally prescribed for depression.
He is also having me try a new medication for reflux. I have had a sensitivity and allergic reactions to many medications in the past, including recently Prilosec. I have taken Cymbalta in the past and only stayed on for 5 days because it made me feel nauseated and sick, loopy and apathetic. I hope I do ok on these new meds. I guess I'll try the Nortriptyline first, taking two new meds would be just stupid in my case.
I did cry briefly when he gave it a name. I'll be honest. It was a mix of relief and sadness that washed over me, but he was very sweet and that made such a huge difference. He reassured me we would try what we needed to until we found something that worked for me.
He told me to stay away from caffeine, chocolate, greasy food and spicy food. I gave him a grumpy face and "harrumphed", and he laughed. I told a dear friend today that my doctor had basically cut out my whole diet.
What happened in the next few minutes is typically what you can expect from me. I always use humor to make people laugh, deflect pain, lighten the mood. It's one of my strongest survival skills. My doc asked my how on earth I had gone this long without being diagnosed, why I had never brought up fibromyalgia before. I told him again how I lived most of my life in pain, pain was just a fact of everyday life for me. Being that I have not spoken to my mother in eight years, it had not ever entered my mind until I started having MORE pain, and more pain simultaneously.
Doc, shaking his head and chuckling: Well, you have 18 out of 18...
Me: I'm an over-achiever... you should already know this about me!!! I had 30 gallstones for Pete's sake, I don't do anything halfway!
When I told my husband what my doc had taken out of my diet, he nearly fell over laughing hysterically. I pleaded with my husband, "What the -insert expletive here- am I supposed to eat then? RICE???"
I guess I'm going on the Survivor diet.
Until then ...
I hope and dream.
~Mary
Knowing me and my medical history can be overwhelming so I took some time this morning to type up a brief history of complaints specifically related to what I think is going on with me. Call it OCD, call it odd... You would be right. I am nothing if not prepared.
After listening to me, and letting me know he had read my semi-
It went a little something like this:
Doc, while pressing on my hips: Here...
Me: Yeh-ESSS!!!
Doc, pressing my lower back: Herrrrre...
Me: YUP!!!!!
Doc, pressing my right inner elbow: HERRREEE...
Me: Ummmm no...
Doc: Really? *he moves his fingers slightly*
Me: OK. Yes. YESSS!! YUUUUUUUP!!! *begging and pleading with my eyes and inflection for him to stop*
It went on like this until he had checked all 18 points, apologizing profusely as he went. He then told me that I had all 18 out of 18. My doc told me, "Yes, I believe you do have Fibromyalgia. You have all the classic symptoms."
He wants to try the lowest dose of Nortriptyline one pill at bed time, then to see me in 4 weeks.
Having been a nurse I already knew that serotonin plays a big part in a lot of disorders and illnesses like OCD, depression, altered pain pathways and excessive pain. I also already knew that depression meds have been helpful in these instances so I was not surprised to find that I would be on a med that was normally prescribed for depression.
He is also having me try a new medication for reflux. I have had a sensitivity and allergic reactions to many medications in the past, including recently Prilosec. I have taken Cymbalta in the past and only stayed on for 5 days because it made me feel nauseated and sick, loopy and apathetic. I hope I do ok on these new meds. I guess I'll try the Nortriptyline first, taking two new meds would be just stupid in my case.
I did cry briefly when he gave it a name. I'll be honest. It was a mix of relief and sadness that washed over me, but he was very sweet and that made such a huge difference. He reassured me we would try what we needed to until we found something that worked for me.
On a lighter note!!! (wait for it... )
He told me to stay away from caffeine, chocolate, greasy food and spicy food. I gave him a grumpy face and "harrumphed", and he laughed. I told a dear friend today that my doctor had basically cut out my whole diet.
What happened in the next few minutes is typically what you can expect from me. I always use humor to make people laugh, deflect pain, lighten the mood. It's one of my strongest survival skills. My doc asked my how on earth I had gone this long without being diagnosed, why I had never brought up fibromyalgia before. I told him again how I lived most of my life in pain, pain was just a fact of everyday life for me. Being that I have not spoken to my mother in eight years, it had not ever entered my mind until I started having MORE pain, and more pain simultaneously.
Doc, shaking his head and chuckling: Well, you have 18 out of 18...
Me: I'm an over-achiever... you should already know this about me!!! I had 30 gallstones for Pete's sake, I don't do anything halfway!
When I told my husband what my doc had taken out of my diet, he nearly fell over laughing hysterically. I pleaded with my husband, "What the -insert expletive here- am I supposed to eat then? RICE???"
I guess I'm going on the Survivor diet.
This is the face of Fibromyalgia :)
One day it will be this again...
I hope and dream.
~Mary
Tuesday, April 10, 2012
Hoping
I'm hoping there is a light at the end of this tunnel; I know tomorrow's doctor visit is just the beginning of finding out what is going on with my body.
I wonder if he will send me to a rheumatologist?
I basically feel like I have the flu[s]. I am so tired, my body aches in different spots, sometimes all at once. I have lower stomach aches every time I need to use the restroom, and I often become nauseated. That coupled with CONSTANT heartburn and the fact that I fell yesterday (I am feeling the affects of that on the right side, the side I fell on)...
I can feel myself slipping into a depression. I do not want to live like this for the rest of my life, but it's not my choice.
I feel like my constant complaining is annoying to my family, and they tune me out. So I choose to suffer in silence. They ask me what's wrong. I say "nothing".
My 20 month old is going through an extremely clingy phase just like the other 2 did. I find I cannot walk 5 feet, let alone leave the room for a few minutes without him whining, crying or going full tilt. It makes me more anxious... I feel so trapped in so many ways.
The things I choose to concentrate on are giving my kids hugs and telling them I love them, thanking them for helping me when I ask- even if they help me begrudgingly. I have been trying to be affectionate with my husband but I'm not sure he notices (or cares) , which makes me desperately sad. BUT... my kids accept my love and soak it in. That will have to do for now :)
Tonight I get to polish some jewelry I have up for sale in a salon in town, bring in a table for the vintage teacup candles I have made and a table to display them on. I also hope to get in a few new pieces as well.
I'm hanging on to the glimmers and glimpses of hope, and in the meantime I try not to be too anxious about wondering what my doc will have to say.
I hope you have a peaceful day, wherever you are.
~Mary
I wonder if he will send me to a rheumatologist?
I basically feel like I have the flu[s]. I am so tired, my body aches in different spots, sometimes all at once. I have lower stomach aches every time I need to use the restroom, and I often become nauseated. That coupled with CONSTANT heartburn and the fact that I fell yesterday (I am feeling the affects of that on the right side, the side I fell on)...
I can feel myself slipping into a depression. I do not want to live like this for the rest of my life, but it's not my choice.
I feel like my constant complaining is annoying to my family, and they tune me out. So I choose to suffer in silence. They ask me what's wrong. I say "nothing".
My 20 month old is going through an extremely clingy phase just like the other 2 did. I find I cannot walk 5 feet, let alone leave the room for a few minutes without him whining, crying or going full tilt. It makes me more anxious... I feel so trapped in so many ways.
The things I choose to concentrate on are giving my kids hugs and telling them I love them, thanking them for helping me when I ask- even if they help me begrudgingly. I have been trying to be affectionate with my husband but I'm not sure he notices (or cares) , which makes me desperately sad. BUT... my kids accept my love and soak it in. That will have to do for now :)
Tonight I get to polish some jewelry I have up for sale in a salon in town, bring in a table for the vintage teacup candles I have made and a table to display them on. I also hope to get in a few new pieces as well.
I'm hanging on to the glimmers and glimpses of hope, and in the meantime I try not to be too anxious about wondering what my doc will have to say.
I hope you have a peaceful day, wherever you are.
~Mary
Saturday, April 07, 2012
What is this pain? Could it be fibromyalgia?
I have been living with physical pain for quite some time, I believe my first chronic pain started when I was 11. I can remember falling onto my back from a great height for the second time in my life, the first time being when I was probably only 4. Since the 6th grade I have had back problems.
Everyday I have pain. Sometimes aches, sometimes a tremendous amount of joint pain after sitting for 1/2 hour. This has been my life for the last 31 of my 42 years, until recently.
Let me just say that having a baby at the age of 40 was hard on me, I strongly recommend you do NOT try it unless you are of sound body! I was very sick most of the pregnancy, living from my recliner and just standing for a few minutes had me contracting. This son of mine took me down, literally. I shrunk a whole inch while pregnant with Jacob. I ached, I struggled to move from my trusty recliner just to use the restroom or get a drink.
Nearly two years later, still feeling so very sick after he was born my surgeon discovered a whopping 30 gallstones in my gallbladder. But why I am I still nauseated most mornings? Surely I cannot live like this after being told that I would feel so much better after having my gallbladder removed.
And now, two weeks ago I started having aches and pains in my left shoulder which gradually escalated to full on fire and tenderness. Just gently wrapping a towel around my shoulders after a shower brought tears to my eyes just a few days ago.
The pain seems to have started in my left shoulder and each day after moved across my torso a little more. I don't mean that the pain was only in the new spot, I mean I was and am having simultaneous pain firing off at the same time throughout my body. It brought me to tears. It has worked it's way to my right shoulder now and my lower right back.
In the midst of this I realized that my mother had told me many years ago that she was diagnosed with fibromyalgia. I Googled symptoms and I seemed to have the almost all of them, which is unsettling and yet comforting at the same time. The cause of my pain now (possibly) has a name, yet the thought of living with this for the rest of my life is very depressing.
From WebMD:
Common symptoms of fibromyalgia -- also known as fibromyalgia syndrome or FMS -- may include:
I once again am sequestered to my trusty recliner while my house work and jewelry to do list seems to grow to unmanageable levels. I take care of my kids and do the basics like dishes, while the laundry piles up.
In the meantime, I have an appointment this next week with my family doctor. I am axious to hear what he has to say.
If you have a history of FMS and you have some tips for me or websites that you would like to share, I would be grateful! Tell me what you are doing to ease your symptoms and what you are doing to cope.
Thanks for reading!
Keeping it real, keeping it honest with a glimmer of hope,
Mary
Everyday I have pain. Sometimes aches, sometimes a tremendous amount of joint pain after sitting for 1/2 hour. This has been my life for the last 31 of my 42 years, until recently.
Let me just say that having a baby at the age of 40 was hard on me, I strongly recommend you do NOT try it unless you are of sound body! I was very sick most of the pregnancy, living from my recliner and just standing for a few minutes had me contracting. This son of mine took me down, literally. I shrunk a whole inch while pregnant with Jacob. I ached, I struggled to move from my trusty recliner just to use the restroom or get a drink.
Nearly two years later, still feeling so very sick after he was born my surgeon discovered a whopping 30 gallstones in my gallbladder. But why I am I still nauseated most mornings? Surely I cannot live like this after being told that I would feel so much better after having my gallbladder removed.
And now, two weeks ago I started having aches and pains in my left shoulder which gradually escalated to full on fire and tenderness. Just gently wrapping a towel around my shoulders after a shower brought tears to my eyes just a few days ago.
The pain seems to have started in my left shoulder and each day after moved across my torso a little more. I don't mean that the pain was only in the new spot, I mean I was and am having simultaneous pain firing off at the same time throughout my body. It brought me to tears. It has worked it's way to my right shoulder now and my lower right back.
In the midst of this I realized that my mother had told me many years ago that she was diagnosed with fibromyalgia. I Googled symptoms and I seemed to have the almost all of them, which is unsettling and yet comforting at the same time. The cause of my pain now (possibly) has a name, yet the thought of living with this for the rest of my life is very depressing.
From WebMD:
Common symptoms of fibromyalgia -- also known as fibromyalgia syndrome or FMS -- may include:
- Pain
- Anxiety
- Concentration and memory problems -- known as "fibro fog"
- Depression
- Fatigue
- Headaches
- Irritable bowel syndrome
- Morning stiffness
- Painful menstrual cramps
- Sleep problems
- Swelling, numbness, and tingling in hands, arms, feet, and legs
- Tender points
- Urinary symptoms
I once again am sequestered to my trusty recliner while my house work and jewelry to do list seems to grow to unmanageable levels. I take care of my kids and do the basics like dishes, while the laundry piles up.
In the meantime, I have an appointment this next week with my family doctor. I am axious to hear what he has to say.
If you have a history of FMS and you have some tips for me or websites that you would like to share, I would be grateful! Tell me what you are doing to ease your symptoms and what you are doing to cope.
Thanks for reading!
Keeping it real, keeping it honest with a glimmer of hope,
Mary
Saturday, January 16, 2010
WOW
I am copying some of this from a response comment I left for Pam on my previous post, and I wasn't sure if I should even post this because I'm a mess and I have nothing good to say lately:
Thank you everyone for your responses and support :)It truly is appreciated.
My ob office called yesterday and said that my pap came back with some abnormal cells so they want to do more tests on my next appt 2/4/10. My best friend just happened to call me right after they did, so it was a real blessing. They weird thing is I KNEW as he was doing my pap that it was going to come back abnormal.
Maybe it was God warning me and preparing me. I don't know.
I am hanging by a thread, I don't know how much more stress I can take. Last night I had to lay down for 1/2 hr because I could feel my uterus contracting. I'll be 13 week this coming tuesday so...
*Sigh* I am hanging in there trying to be positive.
Thank you everyone for your responses and support :)It truly is appreciated.
My ob office called yesterday and said that my pap came back with some abnormal cells so they want to do more tests on my next appt 2/4/10. My best friend just happened to call me right after they did, so it was a real blessing. They weird thing is I KNEW as he was doing my pap that it was going to come back abnormal.
Maybe it was God warning me and preparing me. I don't know.
I am hanging by a thread, I don't know how much more stress I can take. Last night I had to lay down for 1/2 hr because I could feel my uterus contracting. I'll be 13 week this coming tuesday so...
*Sigh* I am hanging in there trying to be positive.
Friday, May 30, 2008
Every Silver Lining Has It's Cloud
I know yesterday I was pretty upbeat... but the realization that one day my child will have to have her chest cracked open is finally sinking in. Yesterday after sending the email out, then posting the email on my blog I came down of the good news high. We will see the pediatric cardiologist again in 2 years, and man... it's going to be a long 2.
Statistically, Emma will have to have surgery one day, and it doesn't matter how long from now, sooner or later she will have it... I feel like there is a heavy thing hanging over us, and knowing that this thing is there just waiting... I'm scared for my child.
Though I have resolved to make sure that we need to stop messing around with the health of our family (John with high triglycerides and high blood pressure, and Anna bordering on being considered obese earlier according to her BMI last summer - which we resolved with a lot of cutting back and watchfulness), but now seriously we are making or breaking Emma. What she learns now in eating habits and exercise is crucial. If we teach her healthy things hopefully it will follow her into her teens and adulthood, making recovery for her much easier.
What is troubling me is that her valve flaps are already showing signs of thickening, which isn't good. If they become very thick and stiff, they will not close properly. Which could mean that surgery could be sooner rather than later in our future.
If you could, please pray for me to see the silver lining, and enjoy her health right now. Not only enjoy it, but continue to nurture and support it so she can go as long as possible without having to have surgery. I'm trying to focus on that right now. Tears , and more tears, and lots of prayer.
I am having trouble with faith. I find it amazing that with Rachel, I had no doubts that she would be healed, and this makes me feel really bad as a mom. *tears again* Why is that? How could I possibly have more faith for a cousin than my own child, who I carried for nine months? Who is a part of my very flesh and heart? How could something so little have a broken heart, when she was so very vital in healing mine after losing a baby?
Sheesh, I think we know where Anna and Emma get their drama genes from *LOL*
Anyway, prayers for me too would be great because my faith is wavering, and I know it is because of fear.
~mert
Statistically, Emma will have to have surgery one day, and it doesn't matter how long from now, sooner or later she will have it... I feel like there is a heavy thing hanging over us, and knowing that this thing is there just waiting... I'm scared for my child.
Though I have resolved to make sure that we need to stop messing around with the health of our family (John with high triglycerides and high blood pressure, and Anna bordering on being considered obese earlier according to her BMI last summer - which we resolved with a lot of cutting back and watchfulness), but now seriously we are making or breaking Emma. What she learns now in eating habits and exercise is crucial. If we teach her healthy things hopefully it will follow her into her teens and adulthood, making recovery for her much easier.
What is troubling me is that her valve flaps are already showing signs of thickening, which isn't good. If they become very thick and stiff, they will not close properly. Which could mean that surgery could be sooner rather than later in our future.
If you could, please pray for me to see the silver lining, and enjoy her health right now. Not only enjoy it, but continue to nurture and support it so she can go as long as possible without having to have surgery. I'm trying to focus on that right now. Tears , and more tears, and lots of prayer.
I am having trouble with faith. I find it amazing that with Rachel, I had no doubts that she would be healed, and this makes me feel really bad as a mom. *tears again* Why is that? How could I possibly have more faith for a cousin than my own child, who I carried for nine months? Who is a part of my very flesh and heart? How could something so little have a broken heart, when she was so very vital in healing mine after losing a baby?
Sheesh, I think we know where Anna and Emma get their drama genes from *LOL*
Anyway, prayers for me too would be great because my faith is wavering, and I know it is because of fear.
1 John 4:17-19
In this is love perfected with us, that we may have confidence for the day of judgment, because as he is so are we in this world. There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and he who fears is not perfected in love.
~mert
Thursday, May 29, 2008
Matters of the heart
Hey y'all,
Just wanted to update you on Emma's heart situation. We went to her appointment yesterday.
If you remember, Emma complained of chest pain April 22nd, and we tool her to the ER. They ordered an chest xray and said they thought it was muscular pain or growing pains, but wanted us to see a pediatrician just in case (we normally just see a family doc). The pediatrician we saw a week later said that- after me telling her that Emma had been known to have a murmur on occasion, only to have it gone on other visits- that she did hear a murmur but didn't think it was anything to lose sleep over. She listened to Em's heart for a very long time, but she said she would like to have it checked out by a pediatric cardiologist just to be sure, and so that we would have a baseline diagnosis/evidence of normalcy for the future things like other doctor visits and checkups, plus sports in the future. I also told her (just as I had the ER doc) that Emma had periods where her lips wold be a little dusky/blue, as well as her nail beds. I would have her move around a bit and she would "pink up" after a few short minutes, always without complaints about the whole thing. Emma was always asymptomatic. The doctor said that this was actually fairly normal for kids Emma's age and to not worry about it.
Surprisingly, no EKGs were done either visit, but the pediatrician said that she would rather have the specialist do it.
So... yesterday, Em had an EKG at the ped. cardiologists office, which was normal. The doc then came in to see her and said that she did hear a murmur and the spot she heard it in seemed to be one of the lower chambers. Her thoughts were that it was most likely a small hole in one of the lower chambers (called a ventricle). She thought that the blue lips/nail beds was normal for her age, that the murmur was slight leading her to believe that the hole was very small because her EKG was normal... but she wanted to do an ultrasound of the heart to check out the size of the hole.
The BAD news:
She checked the heart valves and came across a birth defect that turns out to be pretty common.Normally the aortic valve, when closed usually looks like a Mercedes sign and it has 3 flaps that open and close when the heart pumps blood from from the lower chambers. This is called a tricuspid.
Emma's aortic valve is what is called a Bicuspid because 2 of the flaps are stuck together, and because they are stuck, her valve looks more like a foot ball shape when the flaps are open, instead of a perfect round shape that a tricuspid has when open. She also noted that the valve flaps are a bit thicker than they should be.
The GOOD news is that she couldn't find the hole in the lower chambers of the heart, she she believes it is a pin sized hole. Also, even though she has this heart defect, she said the heart is beating normally, not working too hard to compensate. Also she said there was no regurgitation of blood back into the lower chamber of the heart, meaning , as she put it " the heart isn't back washing blood back into the lower section". VERY good news. Also, the valve is closing completely right now. She believes that Emma will have a normal childhood, the heart is beating perfectly. The problem will be if and when her body grows but the aortic valve doesn't, therefore causing the Bicuspid (two flapped) valve to remain partially open, causing back flow of blood and making the heart work twice as hard. If this happens - most likely near or into adulthood- she will need surgery to fix it.
There are no restrictions to her activity, thank goodness. She is allowed to run and play like any normal kid. ;)
She wants to see Emma back in 2 years for a full work up, and wants both of the kids to have their cholesterol checked since Johns side (maternal and paternal) all pretty much have high cholesterol.
Through all of this Emma was very watchful yet grouchy, but she didn't cry once. She did complain when the doc was doing the ultrasound of her heart. A few times she cracked us up by saying "OW!" when the doc wasn't even touching her. I said that she was probably complaining because she's pretty bony, Emma is a peanut. The doc was trying to distract Emma by asking her questions and encouraging her to look at the screen, but Emma- in TRUE 'vich fashion (John's side of the family)- ignored her out of sheer stubbornness, which we also thought was hilarious. She would only answer the questions if I re-asked them, refusing eye contact while watching Nemo.
Anywho, we are praying that God keeps her heart working normal, the hole heals up... I might even get the courage up to ask for complete healing... Because we have had evidence recently that God is an awesome God, and he hears our prayers, haven't we (my cousin Rachel)? *big grin*
Thanks for listening, and your prayers too.
~mert
Just wanted to update you on Emma's heart situation. We went to her appointment yesterday.
If you remember, Emma complained of chest pain April 22nd, and we tool her to the ER. They ordered an chest xray and said they thought it was muscular pain or growing pains, but wanted us to see a pediatrician just in case (we normally just see a family doc). The pediatrician we saw a week later said that- after me telling her that Emma had been known to have a murmur on occasion, only to have it gone on other visits- that she did hear a murmur but didn't think it was anything to lose sleep over. She listened to Em's heart for a very long time, but she said she would like to have it checked out by a pediatric cardiologist just to be sure, and so that we would have a baseline diagnosis/evidence of normalcy for the future things like other doctor visits and checkups, plus sports in the future. I also told her (just as I had the ER doc) that Emma had periods where her lips wold be a little dusky/blue, as well as her nail beds. I would have her move around a bit and she would "pink up" after a few short minutes, always without complaints about the whole thing. Emma was always asymptomatic. The doctor said that this was actually fairly normal for kids Emma's age and to not worry about it.
Surprisingly, no EKGs were done either visit, but the pediatrician said that she would rather have the specialist do it.
So... yesterday, Em had an EKG at the ped. cardiologists office, which was normal. The doc then came in to see her and said that she did hear a murmur and the spot she heard it in seemed to be one of the lower chambers. Her thoughts were that it was most likely a small hole in one of the lower chambers (called a ventricle). She thought that the blue lips/nail beds was normal for her age, that the murmur was slight leading her to believe that the hole was very small because her EKG was normal... but she wanted to do an ultrasound of the heart to check out the size of the hole.
The BAD news:
She checked the heart valves and came across a birth defect that turns out to be pretty common.Normally the aortic valve, when closed usually looks like a Mercedes sign and it has 3 flaps that open and close when the heart pumps blood from from the lower chambers. This is called a tricuspid.
Emma's aortic valve is what is called a Bicuspid because 2 of the flaps are stuck together, and because they are stuck, her valve looks more like a foot ball shape when the flaps are open, instead of a perfect round shape that a tricuspid has when open. She also noted that the valve flaps are a bit thicker than they should be.
The GOOD news is that she couldn't find the hole in the lower chambers of the heart, she she believes it is a pin sized hole. Also, even though she has this heart defect, she said the heart is beating normally, not working too hard to compensate. Also she said there was no regurgitation of blood back into the lower chamber of the heart, meaning , as she put it " the heart isn't back washing blood back into the lower section". VERY good news. Also, the valve is closing completely right now. She believes that Emma will have a normal childhood, the heart is beating perfectly. The problem will be if and when her body grows but the aortic valve doesn't, therefore causing the Bicuspid (two flapped) valve to remain partially open, causing back flow of blood and making the heart work twice as hard. If this happens - most likely near or into adulthood- she will need surgery to fix it.
There are no restrictions to her activity, thank goodness. She is allowed to run and play like any normal kid. ;)
She wants to see Emma back in 2 years for a full work up, and wants both of the kids to have their cholesterol checked since Johns side (maternal and paternal) all pretty much have high cholesterol.
Through all of this Emma was very watchful yet grouchy, but she didn't cry once. She did complain when the doc was doing the ultrasound of her heart. A few times she cracked us up by saying "OW!" when the doc wasn't even touching her. I said that she was probably complaining because she's pretty bony, Emma is a peanut. The doc was trying to distract Emma by asking her questions and encouraging her to look at the screen, but Emma- in TRUE 'vich fashion (John's side of the family)- ignored her out of sheer stubbornness, which we also thought was hilarious. She would only answer the questions if I re-asked them, refusing eye contact while watching Nemo.
Anywho, we are praying that God keeps her heart working normal, the hole heals up... I might even get the courage up to ask for complete healing... Because we have had evidence recently that God is an awesome God, and he hears our prayers, haven't we (my cousin Rachel)? *big grin*
Thanks for listening, and your prayers too.
~mert
Wednesday, May 07, 2008
Update on little Emma Rose
Well, we had a follow up appointment for Emma today, our little peanut. Just so you know how much of a peanut... she's3 feet tall and 27 pounds fully clothed. ;)
Anyway, our new pediatrician said that she did hear a slight systolic heart murmur, classified as a stage 1. She said if I hadn't mentioned that Emma was diagnosed with a heart murmur (at birth, which they recanted later at a peds appointment because they couldn't find it- then last year when she had pneumonia they heard it again, only to not be able to find it during a follow up after antibiotics), she might not have caught it.
So... Emma has an appointment to see a pediatric cardiologist out of town on May 28th. They will do an EKG there and will look at her chest xray from her ER visit... and based on those the doctor will decide whether or not she needs to have an echocardiogram.
The doc did say that overall, she isn't too worried about it, and that I shouldn't lose sleep over it and that it's good to just have it checked out and documented now because later in life other doctors will notice it and will want all of these tests done anyway (if we don't look into it).
I want it looked at anyway, whether or not it is considered minor. This is my baby we are talking about here... nothing is minor to me LOL!
I let the doc know about Emma having gray/ grayish-blue lips at times, and dusky nail beds... and that it usually resolves itself within a few minutes, and she listened intently. She asked if her fingers and toes were cold during these episodes and said it was common for children with heart murmurs to experience this. I was really glad that she took me seriously because when I mentioned this during her bout with pneumonia last year they blew me off because she was fine by the time we got her to the ER.
Emma did well, she followed directions during the exam and didn't shed a single tear. She did however scowl at the doctor while the doc listened several minutes to her heart, moving the stethoscope every 5 seconds or so. Emma was awarded with a sucker, which was blue of all things... but at least her lips are tinted blue for a good reason for once. ;)
I will let you guys know what the pediatric cardiologist says after the 28th, thanks in advance for your thoughts and prayers. We really appreciate it!
Here are a few pics of miss thang after her appointment, sporting a pony tail, my sunglasses and blue (sucker tinted) lips. :D
PS- I forgot to add that as of 2 days ago, Emma has told us that she isn't afraid of bugs anymore. Her kitty cat- the one she has a death grip on in the photos above- IS afraid of bugs, but she isn't. ;)
Anyway, our new pediatrician said that she did hear a slight systolic heart murmur, classified as a stage 1. She said if I hadn't mentioned that Emma was diagnosed with a heart murmur (at birth, which they recanted later at a peds appointment because they couldn't find it- then last year when she had pneumonia they heard it again, only to not be able to find it during a follow up after antibiotics), she might not have caught it.
So... Emma has an appointment to see a pediatric cardiologist out of town on May 28th. They will do an EKG there and will look at her chest xray from her ER visit... and based on those the doctor will decide whether or not she needs to have an echocardiogram.
The doc did say that overall, she isn't too worried about it, and that I shouldn't lose sleep over it and that it's good to just have it checked out and documented now because later in life other doctors will notice it and will want all of these tests done anyway (if we don't look into it).
I want it looked at anyway, whether or not it is considered minor. This is my baby we are talking about here... nothing is minor to me LOL!
I let the doc know about Emma having gray/ grayish-blue lips at times, and dusky nail beds... and that it usually resolves itself within a few minutes, and she listened intently. She asked if her fingers and toes were cold during these episodes and said it was common for children with heart murmurs to experience this. I was really glad that she took me seriously because when I mentioned this during her bout with pneumonia last year they blew me off because she was fine by the time we got her to the ER.
Emma did well, she followed directions during the exam and didn't shed a single tear. She did however scowl at the doctor while the doc listened several minutes to her heart, moving the stethoscope every 5 seconds or so. Emma was awarded with a sucker, which was blue of all things... but at least her lips are tinted blue for a good reason for once. ;)
I will let you guys know what the pediatric cardiologist says after the 28th, thanks in advance for your thoughts and prayers. We really appreciate it!
Here are a few pics of miss thang after her appointment, sporting a pony tail, my sunglasses and blue (sucker tinted) lips. :D
PS- I forgot to add that as of 2 days ago, Emma has told us that she isn't afraid of bugs anymore. Her kitty cat- the one she has a death grip on in the photos above- IS afraid of bugs, but she isn't. ;)
Wednesday, January 09, 2008
Glamour, Interrupted: a book review
I recently got the opportunity to choose from a wide assortment of books at Collins, and I jumped at the chance to read Glamour, Interrupted: How I Became the Best-Dressed Patient in Hollywood by Steven "Cojo" Cojocaru. I have been a fan of his for a while and have always loved watching him on Entertainment Tonight or during Red Carpet events. His particular style of wit while critiquing the rich and famous is chicken soup for my sarcastic soul. In short, I feel a certain camaraderie. ;)
Cojo's book is filled with humor and sarcasm, and as I read his book I realized that I'm not sure that I could even be that upbeat if I had gone through what he did. In his book he talks about the exact moments he suspected serious health problems, later becoming diagnosed with a life threatening kidney disease, and his ongoing struggle to stay afloat in a cold and not so sterile world of kidney transplants and dialysis.
Steven's book chronicles his struggles and triumphs, and eventually acceptance that life isn't perfect no matter how hard you work to make it appear that way. Through his illness, Steven learns what real unconditional love is in the form of friends, fans, and family and he puts a very human face to kidney disease in spite of his fame and celebrity.
I applaud him for writing his story, and despite suffering so much, being able to do it in a way that is so honest and open... and so very, very funny.
I really enjoyed reading Steven Cojocaru's book and I would recommend it to anyone, especially fans and anyone who has hit rock bottom and thought that there was no way up; his book clearly proves that you can overcome with the love and support of the ones around you.
Glamour, Interrupted is scheduled for release January 22nd, 2008. You can click the links for more info.
*** All the book reviews done for HarperCollins or Collins Publishing (an Imprint of HarperCollins Publishing) are done with one stipulation- I receive the book for free and read it. If I like it, I review it on my blog. These are not paid reviews per se, except for receiving the book.***
Subscribe to:
Posts (Atom)