Hello there world! I had a follow up appointment with my rheumatologist today who treats my Lupus and Fibromyalgia. As you may recall in a previous blog, I have been having a very difficult time with the fibromyalgia for the past 7 months and have had to try several drugs such as a combination of Lyrica and Prozac, Soma, and now Cymbalta.
Good news: I am now on week 3 and the Cymbalta is now finally starting to help with my fibromyalgia pain and paresthesia. I am 30% better than I was before starting the Cymbalta. I still have depression and the Cymbalta hasn’t done a single thing to help that out. The doctor said to let it take a little more time to work its way into my system before we try an added medication to help with the depression.
Bad news: Lupus has been slowly making its way back in the forefront. My fingers are swollen to the point that they are shiny and red, my knuckles are bright red. I have traveling joint pain. My rashes from Tumid Lupus are out of control, covering my upper arms, cheeks and chest. And last but not least, my scalp is inflamed and forming new sores on a daily basis.
What does this mean? I am in a flare up, and its a bad one! I am on the generic version of Plaquenil called Hydroxochloroquine. This medication should be helping out my rashes and joint pain but it is not doing a single thing for my symptoms. It is time to start name brand Plaquenil to see if it helps me out any more than the generic version. He does not want to raise my Prednisone again, as we have been trying to lower it since September.
If the name brand of Plaquenil does not work then we will try Methotrexate weekly injections to try and control the skin and joint flare up. He does not want to jump into the Methotrexate, as I am already on another immunosuppressant called CellCept for my Lupus related kidney disease. The rheumatologist is testing my kidneys to see if they are going haywire again as well. I had 5 tubes of blood drawn today, which is not too bad seeing as though most of the time they draw anywhere from 5-10 vials.
My rheumatologist has informed me that I am not just sensitive to most forms of commercial lighting and sunlight anymore, it is making me extremely sick! Well, isn’t that lovely? He told me that I need to break down and buy a big hat to shade my face and wear long sleeves any time I am outside of my house on top of using the sunscreen. He said to buy sun protective clothing as well and to call my dermatologist for a visit. I looked online for some clothing, and Mr. Rheumatologist is out of his mind! These clothes are outrageously expensive!
I was so upset earlier today because of my news from my doctor that I called my husband to cry to him. I told him, “This whole Lupus business is way too expensive to keep up with.” He said that I was referring to the Lupus as if it’s the newest fad that I could choose to or not to follow. Okay, well, maybe the way I said it was a little bit ridiculous, as are many of the things that spit out of my mouth when I’m upset, but it is so true as well! Being sick is so expensive!
As far as my inflamed and sore covered scalp goes, I am a bit discouraged. Last December 2008 I began to develop the same symptoms of sores, inflammation, and itchiness which lead to hair loss by the end of the month. I had lost my hair for 3 months straight, and had a patch missing that was the size of my hand on my left side and on the back of my head. Oh goodness gracious, please don’t let me lose my hair again! I do have 2 wigs from the last time my hair fell out, but no matter how wonderful a wig looks, it is still not MY hair! And even if the wigs do look natural, they are itchy and make my head sweat. Big brimmed hat, you are my newest accessory!
Well, I guess it is time to get to researching sun protective clothing and preparing to sweat in long sleeves in the Sunshine State. I wonder if I am better off buying clothing or material to make my own clothing. Maybe there is a special type of detergent that will add the protection that I need. There has got to be a way to adjust more to my incredibly sensitive skin.
Thursday, December 3, 2009
Saturday, November 28, 2009
Medicare Part D- Tips, Tricks and More!
Hello! As I have stated in a previous blog, I had worked for a Medicare part D supplemental insurance company in the past, and have learned a lot of tricks on how to obtain some of your medications at little or no cost AND how to receive extra help paying for your medications while in the dreaded coverage gap (aka the donut hole). I have compiled a list of resources to help people out and an explanation as to what each of the stages of Medicare part D prescription plans consist of. Click here to read more.
Thursday, November 26, 2009
Thanksgiving Prayer
Dear God,
I hope that I show you how much I love and appreciate You each and every day. There have been times throughout my life where I have had to struggle, but I have never doubted that You were with me. I sometimes wonder why I am experiencing so much pain, whether it be physical or mental, but I know that this is just a part of life, and I am not the only one who feels these emotions.
It is amazing, God, how my life has played out. I have always known that You have a plan for each of us, and that those who trust in You will be rewarded, but I never could have imagined that You would bless me as much as you have done.
God, I thank You for blessing me with a beautiful daughter. She was very tiny, and it was a struggle for her and for myself in the beginning of life, but I knew You were with me throughout the whole experience. I remember feeling the security and warmth as she lay in the NICU under her little isolette. You had calmed me when I should have been a complete mess. You let me know in a way that only you can that everything would be just fine. I trusted in You dear God, and You were right! She is a happy, healthy 3 1/2 year old princess today.
God, I know that my first marriage ended in a divorce, but I feel that the reason that You had guided me to my daughter’s father was to have my daughter. My kidneys were not going to wait until I found the perfect soul mate. There is no reason to look back and wonder what the outcome would be had everything been different, as everything has laid out perfectly.
Despite a marriage that did not last, I am now forever connected with an amazing extended family: my daughter’s grandfather, step-grandmother, great grandmother, and uncle. These people are a testimony to Your love and devotion to us. Throughout all obstacles, they have stood by me and my daughter, only looking out for what is best for us.
My daughter’s father has cut all connections with his father. God, I know it hurts my daughter’s grandfather more than words can explain, but I also know that it is for the best. Her father is not a true believer in You, and despite all of the blessings that You have placed in his life, he chooses to live by his own rules. Dear God, I ask You to comfort my daughter’s grandfather during his toughest times, as he is truly an amazing person.
I thank You God for leading me to my husband and his daughter. I wake up every morning smiling and go to bed every evening with that same warm smile. Even with being as sick as I am, my husband has stood by me. He has never known me to be healthy, yet he does not see the sick me. He sees me for what I believe in and who I am beneath all of these illnesses.
His daughter, my-step daughter, is an absolutely beautiful little girl inside and out. God, she loves You and truly lives by You. She has had so much heartache for a child so young, and yet she has never strayed from You.
I have the most wonderful family that anyone could ever dream of. Dear God, I thank you for all you have given me. I promise to always believe in You and to help others find their way to You. I love You.
In Jesus name I pray, Amen.
I hope that I show you how much I love and appreciate You each and every day. There have been times throughout my life where I have had to struggle, but I have never doubted that You were with me. I sometimes wonder why I am experiencing so much pain, whether it be physical or mental, but I know that this is just a part of life, and I am not the only one who feels these emotions.
It is amazing, God, how my life has played out. I have always known that You have a plan for each of us, and that those who trust in You will be rewarded, but I never could have imagined that You would bless me as much as you have done.
God, I thank You for blessing me with a beautiful daughter. She was very tiny, and it was a struggle for her and for myself in the beginning of life, but I knew You were with me throughout the whole experience. I remember feeling the security and warmth as she lay in the NICU under her little isolette. You had calmed me when I should have been a complete mess. You let me know in a way that only you can that everything would be just fine. I trusted in You dear God, and You were right! She is a happy, healthy 3 1/2 year old princess today.
God, I know that my first marriage ended in a divorce, but I feel that the reason that You had guided me to my daughter’s father was to have my daughter. My kidneys were not going to wait until I found the perfect soul mate. There is no reason to look back and wonder what the outcome would be had everything been different, as everything has laid out perfectly.
Despite a marriage that did not last, I am now forever connected with an amazing extended family: my daughter’s grandfather, step-grandmother, great grandmother, and uncle. These people are a testimony to Your love and devotion to us. Throughout all obstacles, they have stood by me and my daughter, only looking out for what is best for us.
My daughter’s father has cut all connections with his father. God, I know it hurts my daughter’s grandfather more than words can explain, but I also know that it is for the best. Her father is not a true believer in You, and despite all of the blessings that You have placed in his life, he chooses to live by his own rules. Dear God, I ask You to comfort my daughter’s grandfather during his toughest times, as he is truly an amazing person.
I thank You God for leading me to my husband and his daughter. I wake up every morning smiling and go to bed every evening with that same warm smile. Even with being as sick as I am, my husband has stood by me. He has never known me to be healthy, yet he does not see the sick me. He sees me for what I believe in and who I am beneath all of these illnesses.
His daughter, my-step daughter, is an absolutely beautiful little girl inside and out. God, she loves You and truly lives by You. She has had so much heartache for a child so young, and yet she has never strayed from You.
I have the most wonderful family that anyone could ever dream of. Dear God, I thank you for all you have given me. I promise to always believe in You and to help others find their way to You. I love You.
In Jesus name I pray, Amen.
Sunday, November 22, 2009
Fibromyalgia Flare-Up Rant
Fibromyalgia is one of those incredible diseases in which you never know what each day will bring. I almost wish that I got a memo to let me know what would be hurting me the following day so that I may plan my activities accordingly.
I have been suffering with Fibromyalgia since 2002, however, I have never had a flare up that has lasted for this long! It has been 7 agonizing months since my current Fibromyalgia flare up has begun, and there is no sign of it backing down. I have tried everything and anything that have been suggested with no success, and I am fed up.
Muscle relaxers do not help, narcotics do not help. I cannot take a bath, as the tub is too hard of a surface to sit on. The couch does not offer enough support and creates a restlessness in my hips that I cannot shake. The TENS unit feels good as long as I am using it, as does the heating pad, and no longer than that. We did manage to sweet talk Brent's father into giving us their memory foam mattress and that has been the only saving grace.
Muscles burn and tense up from my shoulder blades down to the back of my thighs. I can actually feel the muscles contracting, which is a very strange and uncomfortable feeling. Sitting or laying in one position for more than 5 minutes is impossible. I have got to keep shifting the weight of my body from one side to another. I catch myself clenching my jaw throughout the day from the muscle pain that just will not let up, and I grind my teeth in my sleep all night long. Brent tells me that the sound of me grinding my teeth is so loud that it wakes him up from a dead sleep. This is a man who wouldn't wake up if you told him that he had won the lottery, and the poor thing is waking up from my jackhammer jaws.
I have random stabbing pains in my hips. All I can think of to describe it as is a long needle being forced into my hip repeatedly as if it were a dart board. Soft massages help, but any sort of real pressure will send me flying out of my pants.
My clothes feel as if they are rough. Imagine wearing a shirt lined with short pine needles, and every time you move, the needles scrape against your skin. Now imagine wearing that pine needle lined shirt on top of a sunburn. Ouch! Yes, that is what my clothing feels like. I spend a lot of time during the day wearing nothing more than underwear (blinds closed of course!). My 3 1/2 year old daughter thinks its fun and takes her clothing off too. She wants to be like mommy. My poor angel, if she only knew!
Put any sort of pressure onto my skin, even the slightest touch, and I flinch. I feel as if I am one big gigantic bruise, and not one of those light bruises. I feel like a deep purple, black, and red fresh bruise. It is hard for people to understand how much pain they inflict by touching me at times, and I feel so horrible for backing away before physical contact.
I am so tired of trying medication after medication, and having to wait a few weeks to see if they will help me out. I am beginning to think that Fibromyalgia is a disease with no relief. The only thing I can do is pray that tomorrow will be the day that I wake up flare free.
I have been suffering with Fibromyalgia since 2002, however, I have never had a flare up that has lasted for this long! It has been 7 agonizing months since my current Fibromyalgia flare up has begun, and there is no sign of it backing down. I have tried everything and anything that have been suggested with no success, and I am fed up.
Muscle relaxers do not help, narcotics do not help. I cannot take a bath, as the tub is too hard of a surface to sit on. The couch does not offer enough support and creates a restlessness in my hips that I cannot shake. The TENS unit feels good as long as I am using it, as does the heating pad, and no longer than that. We did manage to sweet talk Brent's father into giving us their memory foam mattress and that has been the only saving grace.
Muscles burn and tense up from my shoulder blades down to the back of my thighs. I can actually feel the muscles contracting, which is a very strange and uncomfortable feeling. Sitting or laying in one position for more than 5 minutes is impossible. I have got to keep shifting the weight of my body from one side to another. I catch myself clenching my jaw throughout the day from the muscle pain that just will not let up, and I grind my teeth in my sleep all night long. Brent tells me that the sound of me grinding my teeth is so loud that it wakes him up from a dead sleep. This is a man who wouldn't wake up if you told him that he had won the lottery, and the poor thing is waking up from my jackhammer jaws.
I have random stabbing pains in my hips. All I can think of to describe it as is a long needle being forced into my hip repeatedly as if it were a dart board. Soft massages help, but any sort of real pressure will send me flying out of my pants.
My clothes feel as if they are rough. Imagine wearing a shirt lined with short pine needles, and every time you move, the needles scrape against your skin. Now imagine wearing that pine needle lined shirt on top of a sunburn. Ouch! Yes, that is what my clothing feels like. I spend a lot of time during the day wearing nothing more than underwear (blinds closed of course!). My 3 1/2 year old daughter thinks its fun and takes her clothing off too. She wants to be like mommy. My poor angel, if she only knew!
Put any sort of pressure onto my skin, even the slightest touch, and I flinch. I feel as if I am one big gigantic bruise, and not one of those light bruises. I feel like a deep purple, black, and red fresh bruise. It is hard for people to understand how much pain they inflict by touching me at times, and I feel so horrible for backing away before physical contact.
I am so tired of trying medication after medication, and having to wait a few weeks to see if they will help me out. I am beginning to think that Fibromyalgia is a disease with no relief. The only thing I can do is pray that tomorrow will be the day that I wake up flare free.
Promises to myself
As I sit here tonight on the couch, I can only wonder how long I will be able to last before my body tells me that it is time to get back into my comfy bed. This is the time of the day that I miss most. The kids are in bed, the dog is curled up next to me and I can finally catch up with my husband... if only I could tolerate sitting in the upright position. I do not know when the last time I was able to sit on the couch for a whole evening and just relax. I used to love getting into bed, but now it seems as if it is something that I am unable to get away from. I have to start taking better care of myself.
Fibromyalgia has been out of control, and now Lupus is coming back with a vengence. I'm not too sure what I did to start this rebellious behavior within my body. I have been being a very good girl. I have been trying my hardest to learn to let things go. If there are dishes in the sink when I go to bed, if the garbage hasn't been taken out yet, if the laundry piles up, well... the walls are not going to cave in. Do you know how hard this is for me to let things get a little bit sloppy from time to time? I don't think its just a me thing, a woman thing, or even a mom thing. Its a control thing! And by the way, when did I get to be so controlling?
You know, the funny thing is that I am controlling only in the fact that I want the house to be perfect and clean at all times. Heck, when it comes to my children's behavior, that is completely out of control. I am a push over. I tell them to do something, and sometimes they listen, sometimes they look at me as if I'm nuts. Well, not any more my dear children. I love you very much, but its time for respect for mom. God help me to stay strong and finally go through with this new routine.
These are my promises to me: I promise to let others do housework and not criticize how it is done. I promise to buy frozen meals from time to time. I promise to follow through with the chore list for the girls. I promise to ask Brent for help. I have no other choice but to organize my life, as I can barely get myself out of bed, nevermind run the house by myself.
Fibromyalgia has been out of control, and now Lupus is coming back with a vengence. I'm not too sure what I did to start this rebellious behavior within my body. I have been being a very good girl. I have been trying my hardest to learn to let things go. If there are dishes in the sink when I go to bed, if the garbage hasn't been taken out yet, if the laundry piles up, well... the walls are not going to cave in. Do you know how hard this is for me to let things get a little bit sloppy from time to time? I don't think its just a me thing, a woman thing, or even a mom thing. Its a control thing! And by the way, when did I get to be so controlling?
You know, the funny thing is that I am controlling only in the fact that I want the house to be perfect and clean at all times. Heck, when it comes to my children's behavior, that is completely out of control. I am a push over. I tell them to do something, and sometimes they listen, sometimes they look at me as if I'm nuts. Well, not any more my dear children. I love you very much, but its time for respect for mom. God help me to stay strong and finally go through with this new routine.
These are my promises to me: I promise to let others do housework and not criticize how it is done. I promise to buy frozen meals from time to time. I promise to follow through with the chore list for the girls. I promise to ask Brent for help. I have no other choice but to organize my life, as I can barely get myself out of bed, nevermind run the house by myself.
Saturday, November 21, 2009
Narcolepsy warning signs- treatment options available (my personal experiences)
Hello again! As you may have read in my previous blogs, I collect illnesses. That sounds horrible but gosh, if I have to have them, the least I can do is joke about them! My newest addition is Narcolepsy, a disease in which I fall asleep during inappropriate circumstances.
I could remember falling asleep in classes as far back as 7th grade. It would only be for 2 minutes at a time, and maybe only 3 or 4 episodes a week. I always figured it was because I did not sleep very well the night before. I had seen others fall asleep in class, so to me, it seemed normal. I could also remember having very vivid dreams, and lots of them.
Throughout my high school years, I remained at a constant 3 to 4 episodes of short, inappropriate naps a week. College was the year that everything started becoming more frequent, however, and I would be snoozing in class on a regular basis. My naps would consist of no more than 2 minutes, however my eyes would feel so heavy throughout the day that everything would turn to a blur the minute I sat down. Do not ask me why, but I still did not think anything of these strange experiences. I just kept blaming everything on lack of sleep.
You have to understand that I was diagnosed with Lupus in 1999, so by then I had attributed any sort of strange symptom that popped up as Lupus related. Lupus patients often suffer from sleep disorders, so I just lumped myself into one of the statistics. No need to look further into the situation, as I already get poked and prodded enough each month for bloodwork.
Funny thing is that I NEVER thought that I had any sort of issue with sleeping other than being tired due to my weakened immune system. It wasn't until my husband, Brent, had pointed out that I fall asleep during very random situations that I may have a problem other than Lupus or the other two illnesses that I had been diagnosed with as time passed by. He did many searches on the internet, and came up with Narcolepsy.
I checked out the symptoms of Narcolepsy and my jaw dropped... and then I fell asleep.... Just kidding! No, really, I checked out the symptoms of Narcolepsy and had found that I was experiencing most of the symptoms! Still, even with matching my symptoms, it was a strange thought that I could actually have Narcolepsy. I made an appointment with my primary care doctor immediately, as I had been telling my rheumatologist for years about my extreme sleepiness and she never did anything about it. My primary care doctor made an appointment for me to have 2 different sleep studies done.
I had symptoms such as falling asleep 7-10 times a day for up to 5 minutes at a time every single day. I would fall asleep during a phone conversation, while watching a movie, and yes, you guessed it... even then too. I had even been falling asleep at work on a more consistent basis. I worked for a medical company and remember answering the phone for a patient, asking her to verify that her house was on fire. When I dozed off, if I was in the middle of speaking, I would keep on speaking. My words would become slow, slurred and jumbled. I would not make a bit of sense. My head would just bounce as I kept trying to keep my eyes open. All I can think of is that I must have looked like one very drunk individual! It was extremely embarrassing to fall asleep in public, but no matter how much I had tried, I could not control it.
The sleep studies were ordered immediately. The first sleep study, called a Polysomnogram, is an overnight study designed to test how well you sleep at night and if there are any disturbances. The second study that I had done is called a Multiple Sleep Latency Test (MSLT), which consists of taking 5 short naps consisting of 20 minutes each the following day. These nap time periods will show if a person is able to fall asleepduring each nap, how quickly, and if they fall into REM sleep.
Well, needless to say, I passed with flying colors. When I say that I passed, I mean that I fell asleep within the first 3 minutes of the overnight test, slept 93% of the time, and had many long dreams. The following day I fell asleep during all 5 naps, as I was not allowed to have any caffeine. I had been using caffeine for years to help me stay awake and was pushing 3 pots of coffee a day.
I did not get my results right away, as they had to be sent out and analyzed by a sleep specialist. I waited patiently for the doctor's office to call me and let me know of my results. The day before the doctor's office called, I had the worst episode of sleepiness I had ever experienced. I was at work and my body became heavy, tingly, and numb. I could barely move my limbs, couldn't keep my eyes open, and couldn't talk. My words were frozen.
When I was finally able to hold my eyes open long enough, I headed straight to the medical clinic inside of work. I did not tell anyone where I was going, I just booked it. By the time I got to the clinic I was exhausted again. I tried to explain what was going on with me but I couldn't concentrate and my words were slurred. The nurse on duty checked my vitals, all of which turned out okay, but was worried. She wanted to call an ambulance because she was unsure of whether or not I was having a stroke. I could barely move my mouth to talk.
Luckily, Brent worked in the same building with me and I was able to call him to have him bring me to the emergency room. While in the emergency room, I had every sort of test you could possibly think of done. All they were able to come up with in the emergency room was a Lupus and Fibromyalgia flare up. I was so fed up with feeling so tired and having the same response that I grasped for any sort of answer other than a flare up. I blamed it on the baked potatoes that I had eaten the night before (I always get a stomach ache from them, so why not?). Brent kept shaking his head and telling me that it wasn't the potatoes. He said that they may not have been my best potatoes, but they were not all that horrible!
I was discharged from the hospital with a big fat diagnosis of flare up. I was told to rest for a couple of days before returning to work and to follow up with my primary care doctor, and to come back if symptoms became worse. I was starting to think that I was making myself sick, and that this was all in my head. How on earth could no one find anything wrong with me other than a stinking flare up?
Well, it just so happened that the very next day I received a phone call from the primary care doctor letting me know that I did in fact have Narcolepsy and that he was referring me to a neurologist/sleep specialist. It was not Lupus or Fibromyalgia related, and it was not in my head.
I had my appointment with the neurologist/sleep specialist and he had explained to me that what I was experiencing was very normal for a person with Narcolepsy. Better yet, there were medications that would be able to help me.
Hallelujah! I was prescribed 200 mg of Provigil to take once to twice daily. I started it immediately, and within days, I felt like a brand new person. I did not know what to do with my lively self! I watched a whole movie, I did not worry about talking on the phone, and I did not fall asleep in the middle of a conversation with Brent.
Provigil has helped me tremendously, however I do find that I need to take it twice daily or half way through the day I need a nap. The best part about taking a nap while on Provigil is that I can actually make it to my bed and nap in comfort.
I still have my good days and bad days with Narcolepsy, but I am so grateful that Brent had taken the time to research everything and push me to pursue this diagnosis. Since being diagnosed I have fired my old rheumatologist and found a wonderful new one who listens to every single concern that I have. I will not be placed on the back burner anymore for any unusual symptoms that may arise, as this diagnosis could have been made nearly 10 years ago!
I could remember falling asleep in classes as far back as 7th grade. It would only be for 2 minutes at a time, and maybe only 3 or 4 episodes a week. I always figured it was because I did not sleep very well the night before. I had seen others fall asleep in class, so to me, it seemed normal. I could also remember having very vivid dreams, and lots of them.
Throughout my high school years, I remained at a constant 3 to 4 episodes of short, inappropriate naps a week. College was the year that everything started becoming more frequent, however, and I would be snoozing in class on a regular basis. My naps would consist of no more than 2 minutes, however my eyes would feel so heavy throughout the day that everything would turn to a blur the minute I sat down. Do not ask me why, but I still did not think anything of these strange experiences. I just kept blaming everything on lack of sleep.
You have to understand that I was diagnosed with Lupus in 1999, so by then I had attributed any sort of strange symptom that popped up as Lupus related. Lupus patients often suffer from sleep disorders, so I just lumped myself into one of the statistics. No need to look further into the situation, as I already get poked and prodded enough each month for bloodwork.
Funny thing is that I NEVER thought that I had any sort of issue with sleeping other than being tired due to my weakened immune system. It wasn't until my husband, Brent, had pointed out that I fall asleep during very random situations that I may have a problem other than Lupus or the other two illnesses that I had been diagnosed with as time passed by. He did many searches on the internet, and came up with Narcolepsy.
I checked out the symptoms of Narcolepsy and my jaw dropped... and then I fell asleep.... Just kidding! No, really, I checked out the symptoms of Narcolepsy and had found that I was experiencing most of the symptoms! Still, even with matching my symptoms, it was a strange thought that I could actually have Narcolepsy. I made an appointment with my primary care doctor immediately, as I had been telling my rheumatologist for years about my extreme sleepiness and she never did anything about it. My primary care doctor made an appointment for me to have 2 different sleep studies done.
I had symptoms such as falling asleep 7-10 times a day for up to 5 minutes at a time every single day. I would fall asleep during a phone conversation, while watching a movie, and yes, you guessed it... even then too. I had even been falling asleep at work on a more consistent basis. I worked for a medical company and remember answering the phone for a patient, asking her to verify that her house was on fire. When I dozed off, if I was in the middle of speaking, I would keep on speaking. My words would become slow, slurred and jumbled. I would not make a bit of sense. My head would just bounce as I kept trying to keep my eyes open. All I can think of is that I must have looked like one very drunk individual! It was extremely embarrassing to fall asleep in public, but no matter how much I had tried, I could not control it.
The sleep studies were ordered immediately. The first sleep study, called a Polysomnogram, is an overnight study designed to test how well you sleep at night and if there are any disturbances. The second study that I had done is called a Multiple Sleep Latency Test (MSLT), which consists of taking 5 short naps consisting of 20 minutes each the following day. These nap time periods will show if a person is able to fall asleepduring each nap, how quickly, and if they fall into REM sleep.
Well, needless to say, I passed with flying colors. When I say that I passed, I mean that I fell asleep within the first 3 minutes of the overnight test, slept 93% of the time, and had many long dreams. The following day I fell asleep during all 5 naps, as I was not allowed to have any caffeine. I had been using caffeine for years to help me stay awake and was pushing 3 pots of coffee a day.
I did not get my results right away, as they had to be sent out and analyzed by a sleep specialist. I waited patiently for the doctor's office to call me and let me know of my results. The day before the doctor's office called, I had the worst episode of sleepiness I had ever experienced. I was at work and my body became heavy, tingly, and numb. I could barely move my limbs, couldn't keep my eyes open, and couldn't talk. My words were frozen.
When I was finally able to hold my eyes open long enough, I headed straight to the medical clinic inside of work. I did not tell anyone where I was going, I just booked it. By the time I got to the clinic I was exhausted again. I tried to explain what was going on with me but I couldn't concentrate and my words were slurred. The nurse on duty checked my vitals, all of which turned out okay, but was worried. She wanted to call an ambulance because she was unsure of whether or not I was having a stroke. I could barely move my mouth to talk.
Luckily, Brent worked in the same building with me and I was able to call him to have him bring me to the emergency room. While in the emergency room, I had every sort of test you could possibly think of done. All they were able to come up with in the emergency room was a Lupus and Fibromyalgia flare up. I was so fed up with feeling so tired and having the same response that I grasped for any sort of answer other than a flare up. I blamed it on the baked potatoes that I had eaten the night before (I always get a stomach ache from them, so why not?). Brent kept shaking his head and telling me that it wasn't the potatoes. He said that they may not have been my best potatoes, but they were not all that horrible!
I was discharged from the hospital with a big fat diagnosis of flare up. I was told to rest for a couple of days before returning to work and to follow up with my primary care doctor, and to come back if symptoms became worse. I was starting to think that I was making myself sick, and that this was all in my head. How on earth could no one find anything wrong with me other than a stinking flare up?
Well, it just so happened that the very next day I received a phone call from the primary care doctor letting me know that I did in fact have Narcolepsy and that he was referring me to a neurologist/sleep specialist. It was not Lupus or Fibromyalgia related, and it was not in my head.
I had my appointment with the neurologist/sleep specialist and he had explained to me that what I was experiencing was very normal for a person with Narcolepsy. Better yet, there were medications that would be able to help me.
Hallelujah! I was prescribed 200 mg of Provigil to take once to twice daily. I started it immediately, and within days, I felt like a brand new person. I did not know what to do with my lively self! I watched a whole movie, I did not worry about talking on the phone, and I did not fall asleep in the middle of a conversation with Brent.
Provigil has helped me tremendously, however I do find that I need to take it twice daily or half way through the day I need a nap. The best part about taking a nap while on Provigil is that I can actually make it to my bed and nap in comfort.
I still have my good days and bad days with Narcolepsy, but I am so grateful that Brent had taken the time to research everything and push me to pursue this diagnosis. Since being diagnosed I have fired my old rheumatologist and found a wonderful new one who listens to every single concern that I have. I will not be placed on the back burner anymore for any unusual symptoms that may arise, as this diagnosis could have been made nearly 10 years ago!
Friday, November 20, 2009
Deadbeat mothers do exist
Hello! As you already know, I am a mom. I have two beautiful daughters. Alexi is my 3 1/2 year old daughter and Arianna is my 6 year old step-daughter. I hate to use the term step-daughter, as she is really my daughter... her mother is what you would call a deadbeat, and does not contribute a single thing towards helping to raise Arianna. I just have such a hard time coming to terms with the fact that her mother, Tiffany, comes in and out of Arianna's life whenever she pleases and Arianna is the one who has to suffer through all of the painful emotions that get stirred up inside of her.
Tiffany left Arianna 2 years ago, as she chose herself over her family. She moved back from Florida to New York. There is a whole story as to why she left, but it all boils down to the fact that Tiffany wanted her own life without any strings attached. From what I have heard, Tiffany never really cared to be a mother and always chose to indulge in herself over spending time with Arianna. My husband is Arianna's father, and from the moment I met Arianna, it was very evident that she and her father had a bond that went beyond father-daughter. He is her stability, her security, and her world.
I met my husband, Brent, on December 31, 2007, just after Tiffany left. At the same time, I was going through a divorce with Lexi's father. Brent and I clicked right away, and our girls, despite the age difference, became friends instantly. Brent and I have a lot of the same interests, views on life, and believe in God. You can say that we are meant to be together, and anyone who knows us would agree.
Lexi and I moved in with Brent and Arianna in February of 2008 (I know, very quickly!). It is absolutely amazing how God places you in a safe place at the very moment you are about to crumble. I became Brent and Arianna's rock, and they became mine and Lexi's. As our household merged, an amazing thing had happened. We had become a family.
From the first day I met Arianna, she would talk about Tiffany. She had told me that her mommy was in New York and would ask me why her mommy left her. I did not know what to say. Brent would tell her that her mommy had to go back to New York to take care of her mommy but that she loved her very much. I could tell that Brent was hurting for Arianna. He was always the main caregiver, but he had been forced into the position as sole caregiver, and did not know how to protect Arianna from the pain of abandonment by her own mother.
I stepped in, as anyone who already is a mother would do, and did my best to make sure that Arianna had everything she could possibly need that she was missing in her life. The last thing that I wanted was for Arianna to feel like I had moved in to take her daddy away from her. Let me tell you, God is amazing, and all had fallen into place so perfectly that to this day it seems as if I am living in a fairytale. Arianna and Lexi are inseparable and Brent and I just got married on October 10, 2009.
Fairytales are not as they seem. A fairytale is not a perfect life, but the perfect life for you. Arianna still has crying spells 2 years later due to insecurities, but her life is more stable and loving than it has ever been. She speaks freely to Brent and I about how she feels about her mother. She loves Tiffany, however, she loves her because she is her mother, and no other reason.
Tiffany is involved in Arianna's life only through the telephone about once a week for 10 minutes. Tiffany does not send any money for child support, does not send Arianna letters, does not send gifts. She contributes nothing but her voice and broken promises. I hear Arianna playing in her room with her dolls. She always tells her dolls that their mommy is not coming back but that it is alright because they have another mommy who loves them and will do anything for them. Arianna is dealing with her loss at her own pace and is overall a very happy child, but I cannot imagine how this has impacted her life and if she will have any issues with self esteem in the future.
Last September of 2008, Arianna had asked me if she could call me mommy. As tears flowed down my cheeks, I scooped her up and gave her the biggest hug. I didn't want to let her go. From that day forward, Arianna has called me mommy. Arianna's mother knows that she calls me mommy, and despite her getting upset initially, she has not done a single thing to try to regain their relationship.
I wonder what Tiffany actually thinks about the situation that she is in. Does she even care that she has done this to Arianna? Why does she even still call Arianna? Is it to ease her own mind and make her feel like a better person? Why doesn't she just give her up so that I can adopt Arianna as my daughter? Does Tiffany even think about how Arianna feels?
Deadbeat moms do exist, however, so does God, and he has placed our family together for a reason... because we are perfect for each other and this is our fairytale.
Tiffany left Arianna 2 years ago, as she chose herself over her family. She moved back from Florida to New York. There is a whole story as to why she left, but it all boils down to the fact that Tiffany wanted her own life without any strings attached. From what I have heard, Tiffany never really cared to be a mother and always chose to indulge in herself over spending time with Arianna. My husband is Arianna's father, and from the moment I met Arianna, it was very evident that she and her father had a bond that went beyond father-daughter. He is her stability, her security, and her world.
I met my husband, Brent, on December 31, 2007, just after Tiffany left. At the same time, I was going through a divorce with Lexi's father. Brent and I clicked right away, and our girls, despite the age difference, became friends instantly. Brent and I have a lot of the same interests, views on life, and believe in God. You can say that we are meant to be together, and anyone who knows us would agree.
Lexi and I moved in with Brent and Arianna in February of 2008 (I know, very quickly!). It is absolutely amazing how God places you in a safe place at the very moment you are about to crumble. I became Brent and Arianna's rock, and they became mine and Lexi's. As our household merged, an amazing thing had happened. We had become a family.
From the first day I met Arianna, she would talk about Tiffany. She had told me that her mommy was in New York and would ask me why her mommy left her. I did not know what to say. Brent would tell her that her mommy had to go back to New York to take care of her mommy but that she loved her very much. I could tell that Brent was hurting for Arianna. He was always the main caregiver, but he had been forced into the position as sole caregiver, and did not know how to protect Arianna from the pain of abandonment by her own mother.
I stepped in, as anyone who already is a mother would do, and did my best to make sure that Arianna had everything she could possibly need that she was missing in her life. The last thing that I wanted was for Arianna to feel like I had moved in to take her daddy away from her. Let me tell you, God is amazing, and all had fallen into place so perfectly that to this day it seems as if I am living in a fairytale. Arianna and Lexi are inseparable and Brent and I just got married on October 10, 2009.
Fairytales are not as they seem. A fairytale is not a perfect life, but the perfect life for you. Arianna still has crying spells 2 years later due to insecurities, but her life is more stable and loving than it has ever been. She speaks freely to Brent and I about how she feels about her mother. She loves Tiffany, however, she loves her because she is her mother, and no other reason.
Tiffany is involved in Arianna's life only through the telephone about once a week for 10 minutes. Tiffany does not send any money for child support, does not send Arianna letters, does not send gifts. She contributes nothing but her voice and broken promises. I hear Arianna playing in her room with her dolls. She always tells her dolls that their mommy is not coming back but that it is alright because they have another mommy who loves them and will do anything for them. Arianna is dealing with her loss at her own pace and is overall a very happy child, but I cannot imagine how this has impacted her life and if she will have any issues with self esteem in the future.
Last September of 2008, Arianna had asked me if she could call me mommy. As tears flowed down my cheeks, I scooped her up and gave her the biggest hug. I didn't want to let her go. From that day forward, Arianna has called me mommy. Arianna's mother knows that she calls me mommy, and despite her getting upset initially, she has not done a single thing to try to regain their relationship.
I wonder what Tiffany actually thinks about the situation that she is in. Does she even care that she has done this to Arianna? Why does she even still call Arianna? Is it to ease her own mind and make her feel like a better person? Why doesn't she just give her up so that I can adopt Arianna as my daughter? Does Tiffany even think about how Arianna feels?
Deadbeat moms do exist, however, so does God, and he has placed our family together for a reason... because we are perfect for each other and this is our fairytale.
Thursday, November 19, 2009
Recipes- creativity is key
Hello! Have you ever looked inside your fridge and scoured the cabinets only to find that you have a whole bunch of nothing? Oh, and to top it off, your children are at your feet saying, "Mommy, I'm hungry." By the time you realize that there is nothing to make they have already repeated themselves 5 times and now the husband is chiming in. Lets just say that this situation is a regular occurrence in my household.
There are not enough hours in the day to get everything done. It is either that or I sleep too much! Sometimes I am just way too exhausted to go grocery shopping. It is a huge ordeal to look at the sales online, make a list, drive to the store, get the groceries, drive home, bring the groceries in the house, and then put them away! Now, before you judge me and call me lazy, you have to admit to yourself that you feel the same way.
Anyways, I tend to get off topic, so I am going to just cut to the chase before it happens again. As much as I cannot stand grocery shopping, I love to cook. It is so fun to get into the kitchen, look through those empty cabinets and come up with some crazy concoction. I would say that I have about a 90% success rate with my inventions, and about 75% of that is kid approved by the toughest critic around: my older daughter Arianna.
I have started a recipe page and will be adding my creative masterpieces on a regular basis. Because I have kidney disease, a lot of my recipes are low in sodium and you may need to add additional salt. I am a vegetarian, so you will see a lot of recipes that do not include meat. Have no fear, the recipes that do call for meat have been taste tested and my husband does not lie. He lays it all out on the line when it comes to flavor, and helps me to improve my recipes if they are not quite up to par.
I encourage you to please come check out my recipe forum and add your favorite recipes to my list. I am always looking for new things to make. Thank you so much for reading about my obsession with creating recipes and I am looking forward to seeing your submissions!
There are not enough hours in the day to get everything done. It is either that or I sleep too much! Sometimes I am just way too exhausted to go grocery shopping. It is a huge ordeal to look at the sales online, make a list, drive to the store, get the groceries, drive home, bring the groceries in the house, and then put them away! Now, before you judge me and call me lazy, you have to admit to yourself that you feel the same way.
Anyways, I tend to get off topic, so I am going to just cut to the chase before it happens again. As much as I cannot stand grocery shopping, I love to cook. It is so fun to get into the kitchen, look through those empty cabinets and come up with some crazy concoction. I would say that I have about a 90% success rate with my inventions, and about 75% of that is kid approved by the toughest critic around: my older daughter Arianna.
I have started a recipe page and will be adding my creative masterpieces on a regular basis. Because I have kidney disease, a lot of my recipes are low in sodium and you may need to add additional salt. I am a vegetarian, so you will see a lot of recipes that do not include meat. Have no fear, the recipes that do call for meat have been taste tested and my husband does not lie. He lays it all out on the line when it comes to flavor, and helps me to improve my recipes if they are not quite up to par.
I encourage you to please come check out my recipe forum and add your favorite recipes to my list. I am always looking for new things to make. Thank you so much for reading about my obsession with creating recipes and I am looking forward to seeing your submissions!
Wednesday, November 18, 2009
Prozac Side Effects - Anxiety!
I started Prozac on October 7th, 2009 in hopes that this medication will help with the depression I was experiencing from Lupus and Fibromyalgia. I had been on Celexa in the past, however, that had caused me to gain weight. I was already on Prednisone, and the Celexa just added that little extra push to make my weight a grand total of 169 pounds on my 5 foot 3 inch frame.
My neurologist had suggested that I try Prozac, as it could also be used to help control my Narcolepsy in conjunction with Provigil, another medication that I had just recently started. He gave me the usual side effect speech and asked if I wanted to try it. I said sure! Why not?
The neurologist had told me how to wean off of the Celexa and start the Prozac. We had a 3 week plan to get me completely switched over and onto a 30 mg daily dosage. By week two of being on Prozac, I had started noticing a difference in my moods. It had started out as me having small bouts of crying episodes for no reason. My husband would ask me what was bothering me and I couldn't tell him. I did not know.
At the start of week three came the heart palpitations and nervousness. I was constantly in a state of worry, feeling as if the world was going to crumble beneath my feet. I was on edge and any sort of noise would trap itself inside of my mind and consume me. I could not remember simple words or names of people; I would just stutter and random words would flow from my mouth. I was becoming a wreck.
By the time week four came around, I would have multiple crying spells a day every day. I would feel on edge in the morning from the time my feet hit the floor. Within an hour, my heart would start beating faster and my stomach would be tied in knots and I would be so nauseous that just the sight of food on television made me gag. If the phone rang, I would silence it. If the dog barked I would jump. If my children asked me a question, I would say no. It didn't matter what the question was, I just couldn't comprehend what they were asking. It was as if I was living in a foreign country and I didn't know the language.
One day in week five of Prozac I had forgotten to take my medication and it was then that I had realized that I hadn't cried but twice that day. I had made dinner and did not need a reminder that I was cooking. It clicked. It had to be the Prozac that was causing me to feel as if nothing was attainable. I had contacted my doctor's office and they had gotten me in to see my doctor within a two day period (thank you to my awesome friend Sharon, who just happens to be a nurse there).
At the doctor appointment I explained what was happening and how I was feeling. My mother went with me to my doctor appointment (as she or my husband always does), and the doctor had explained to us that the Prozac was causing anxiety attacks. He told me not to worry... it will go away once off of the medication. He said that I am going to be a B.O.W. for a little bit longer while weaning off of the medication, however I will not be plagued by this awful mess forever. I asked what a B.O.W. was and my mom laughed so hard I think her eyes were tearing... "bitch on wheels". Good to know that my doctor is not only an excellent doctor, but he's a bit of a comedian too.
It took me 2 days to get off of that dreadful drug and I am now onto the next. It is my 4th day of Cymbalta. Day 1, 2, and 3 went well, but here we go again... the heart is starting to flutter today. With my fingers crossed that this is just the tail end of the Prozac, I will do my best to take deep breaths and re-evaluate every situation that makes my eyes start to water.
***I would just like to say that even though I had a horrible reaction to this drug, Prozac is an absolute life saver for some people. Everyone's body reacts differently to medications, so please keep that in mind as you read my story. Thank you!***
P.S.- I'm down to 152 pounds as of today! Possibly from the anxiety, but at least its a start towards a healthier me.
Please be sure to check out my website Lissa's World for more useful information.
My neurologist had suggested that I try Prozac, as it could also be used to help control my Narcolepsy in conjunction with Provigil, another medication that I had just recently started. He gave me the usual side effect speech and asked if I wanted to try it. I said sure! Why not?
The neurologist had told me how to wean off of the Celexa and start the Prozac. We had a 3 week plan to get me completely switched over and onto a 30 mg daily dosage. By week two of being on Prozac, I had started noticing a difference in my moods. It had started out as me having small bouts of crying episodes for no reason. My husband would ask me what was bothering me and I couldn't tell him. I did not know.
At the start of week three came the heart palpitations and nervousness. I was constantly in a state of worry, feeling as if the world was going to crumble beneath my feet. I was on edge and any sort of noise would trap itself inside of my mind and consume me. I could not remember simple words or names of people; I would just stutter and random words would flow from my mouth. I was becoming a wreck.
By the time week four came around, I would have multiple crying spells a day every day. I would feel on edge in the morning from the time my feet hit the floor. Within an hour, my heart would start beating faster and my stomach would be tied in knots and I would be so nauseous that just the sight of food on television made me gag. If the phone rang, I would silence it. If the dog barked I would jump. If my children asked me a question, I would say no. It didn't matter what the question was, I just couldn't comprehend what they were asking. It was as if I was living in a foreign country and I didn't know the language.
One day in week five of Prozac I had forgotten to take my medication and it was then that I had realized that I hadn't cried but twice that day. I had made dinner and did not need a reminder that I was cooking. It clicked. It had to be the Prozac that was causing me to feel as if nothing was attainable. I had contacted my doctor's office and they had gotten me in to see my doctor within a two day period (thank you to my awesome friend Sharon, who just happens to be a nurse there).
At the doctor appointment I explained what was happening and how I was feeling. My mother went with me to my doctor appointment (as she or my husband always does), and the doctor had explained to us that the Prozac was causing anxiety attacks. He told me not to worry... it will go away once off of the medication. He said that I am going to be a B.O.W. for a little bit longer while weaning off of the medication, however I will not be plagued by this awful mess forever. I asked what a B.O.W. was and my mom laughed so hard I think her eyes were tearing... "bitch on wheels". Good to know that my doctor is not only an excellent doctor, but he's a bit of a comedian too.
It took me 2 days to get off of that dreadful drug and I am now onto the next. It is my 4th day of Cymbalta. Day 1, 2, and 3 went well, but here we go again... the heart is starting to flutter today. With my fingers crossed that this is just the tail end of the Prozac, I will do my best to take deep breaths and re-evaluate every situation that makes my eyes start to water.
***I would just like to say that even though I had a horrible reaction to this drug, Prozac is an absolute life saver for some people. Everyone's body reacts differently to medications, so please keep that in mind as you read my story. Thank you!***
P.S.- I'm down to 152 pounds as of today! Possibly from the anxiety, but at least its a start towards a healthier me.
Please be sure to check out my website Lissa's World for more useful information.
Tuesday, November 17, 2009
Here we go again!
Good evening! Or rather good morning... early morning. As you may have read in my earlier blogs, I have several health issues. I am in the middle of changing medications, trying new ones, weaning off of old ones, and it is taking a toll on my body right now.
I have been in a major flare up of Fibromyalgia flare up for about 6 months now. Before finding my current rheumatologist, I had gone to another one who believed that the only thing that would ever help me was steroid treatments of prednisone. I had no relief from the prednisone, but my doctor would not listen to me. I started to feel as if my symptoms were all in my head. How could I possibly feel so awful with being on steroids, muscle relaxers, and narcotics?
After months of agonizing pain that only the healthy can imagine when they are actively sick with the flu, I said enough is enough! I am extremely lucky to have a very good friend who is a nurse, who by the way just happens to work at my doctor's office. She sweet talked the top rheumatologist to take my case on and help me (this is a doctor who is not accepting new patients).
So, to make a long story short, I saw him and it was love at first visit! This doctor has taken his time to review my records all the way back to 1999 when all hell broke loose. He listens to my complaints and to be honest with you, I think he enjoys the challenge of trying to fix me!
No matter how wonderful my doctor is, I lay here in bed in a full fledged flare up of the dreadful Fibromyalgia. We have tried Lyrica with no success. I am onto Cymbalta as of 3 days ago. I should be able to tell within a couple of weeks if this will help me. I would love to be able to sit on my couch or in a chair for longer than 5 minutes before I want to curl up in a ball and curse the world for my muscles aching and my skin burning.
As if muscles and skin weren't enough of a problem, now I am experiencing more intense joint pain again and headaches are a daily occurrence. Oh Lupus why do you have to come back with a vengeance?
I sometimes wonder how much abuse my body can handle, but each time I begin to doubt myself, God reaches for my hand and guides me. My mother has always said that God doesn't give you more than you can handle. So, of course, you know what that means: I'm a force to be reckoned with.
Brent, just bear with me, and I am sorry for snoring, kicking you, grinding my teeth, and talking all night long in my sleep. And please try not to wake me up too much tonight to tell me to stop waking you up. If you just deal with it for tonight so I can finally get a little bit of a better night sleep, I will bake you a nice big batch of brownies! I love you honey!
I have been in a major flare up of Fibromyalgia flare up for about 6 months now. Before finding my current rheumatologist, I had gone to another one who believed that the only thing that would ever help me was steroid treatments of prednisone. I had no relief from the prednisone, but my doctor would not listen to me. I started to feel as if my symptoms were all in my head. How could I possibly feel so awful with being on steroids, muscle relaxers, and narcotics?
After months of agonizing pain that only the healthy can imagine when they are actively sick with the flu, I said enough is enough! I am extremely lucky to have a very good friend who is a nurse, who by the way just happens to work at my doctor's office. She sweet talked the top rheumatologist to take my case on and help me (this is a doctor who is not accepting new patients).
So, to make a long story short, I saw him and it was love at first visit! This doctor has taken his time to review my records all the way back to 1999 when all hell broke loose. He listens to my complaints and to be honest with you, I think he enjoys the challenge of trying to fix me!
No matter how wonderful my doctor is, I lay here in bed in a full fledged flare up of the dreadful Fibromyalgia. We have tried Lyrica with no success. I am onto Cymbalta as of 3 days ago. I should be able to tell within a couple of weeks if this will help me. I would love to be able to sit on my couch or in a chair for longer than 5 minutes before I want to curl up in a ball and curse the world for my muscles aching and my skin burning.
As if muscles and skin weren't enough of a problem, now I am experiencing more intense joint pain again and headaches are a daily occurrence. Oh Lupus why do you have to come back with a vengeance?
I sometimes wonder how much abuse my body can handle, but each time I begin to doubt myself, God reaches for my hand and guides me. My mother has always said that God doesn't give you more than you can handle. So, of course, you know what that means: I'm a force to be reckoned with.
Brent, just bear with me, and I am sorry for snoring, kicking you, grinding my teeth, and talking all night long in my sleep. And please try not to wake me up too much tonight to tell me to stop waking you up. If you just deal with it for tonight so I can finally get a little bit of a better night sleep, I will bake you a nice big batch of brownies! I love you honey!
Monday, November 16, 2009
28 ounces: Alexi's Story (Part 3)
January 1, 2007
Lexi is turning 6 months old on January 3rd!!! She is the most amazing little baby ever. Lexi is still so tiny. She is about 10 1/2 lbs and 21 1/2 inches long, but she can do things that 6 month old babies can do. It is pretty funny to see reactions of people who expect her to act like a newborn because she's so petite. Lexi is really starting to establish likes and dislikes. She is so fun!
Lexi is teething now, loves to chew on everything and anything. You can tell Lexi is truly content when she curls her shoulders forward, puts her head back a bit and laughs this little "ah hah" sound. Lexi can stand up with assistance, isn't crawling yet, but is acting interested, so maybe it won't be that long until then. She loves the sound of her own voice, and will scream just to hear herself, it’s so funny!
January 10, 2007
It takes a village to raise a child, and Lexi thanks God everyday for our village! Here I was thinking that Lexi was posing and the poor thing was just trying to tell me she had an ear infection!!!
Lexi is trying to feed herself. We are still working on it, bottle doesn't quite make it into the mouth yet.
February 15, 2007I can't remember if in the last update I told you that Lexi is up to 12 lbs. Her ear infection that she had is all better, and she is doing great. Lexi still doesn't want to crawl. She gets so mad when you put her on her belly, it’s like she gets insulted! She loves to hold onto your fingers and walk around! She may very well just skip the whole crawling thing all together.
Lexi has been staying up a whole lot more during the day, barely taking naps, but she is sleeping wonderfully at night. She is into everything and all she wants to do is explore
As far as I go, I am getting my tubes tied in the morning (Friday) at 7:30 am. It was an extremely hard decision for me to make, but it is the only logical answer. My doctors said that I should not ever get pregnant again as my body doesn't like being pregnant. I have also started on CellCept (chemotherapy drug) for my kidney disease, as the protein in my urine has shot up to above 5,000 grams and the nephrologist wants to take action to prevent kidney damage.
March 25, 2007Lexi can sit up on her own, pull up and stand up on her own, and is so so close to walking! She has no interest in crawling. April 3rd she'll be 9 months old! She's around 13 lbs, and maybe about 23" tall (a guess).
Lexi starts daycare on April 23rd, and I go back into work in the office then.
April 30, 2007
click here for Lexi's first steps video
Lexi took her first couple of steps Sunday night. My neighbor was over, and we were playing with Lexi. All of a sudden she tried to take some steps. I didn't have my camera right then, so we tried to re-inact!
Lexi's stats: 10 months old on May 3rd, over 14 lb, about 25 inches long, week 2 of daycare
May 6, 2007Lexi is feeding herself. She is to the point now where if I want her to eat, then I need to let her do it herself, or she will throw a fit. She wants to be a big girl so badly. So, I cleaned the kitchen floor and put Lexi and a cup of yogurt down on the floor. As much of a mess as she made, she actually got quite a bit into her mouth!
Lexi is going to be starting her 3rd week of daycare, and loves it. I have seen a huge difference in Lexi since she started daycare. She talks more, entertains herself more, and she sleeps more at night.
May 31, 2007
click here to see Lexi kissing the camera on video
Lexi had a double ear infection earlier in the month and was put on augmentin. That didn't clear it up, so she is now on omnicef, and they have added zyrtec to see if that will help her out. She has had a bunch of ear infections already... I believe we are on #5! She has been finally feeling better since being on this second antibiotic and being on the zyrtec.
Lexi is 14 lb 9 oz, what a whopper! She'll be 11 months old on June 3rd!!!
July 4, 2007
Lexi went to the doctor last week for her ears, and she still has the same ear infection. She has had this ear infection since the very end of April/beginning of May. She is on her 6th round of antibiotics. She has been on Augmentin, Omnicef, Rosephin shots, back to Augmentin ES, back to Rosephin shots, and now back to Omnicef. I have finally thrown my hands up in the air and taken her into the local natural foods store where a licensed MD specializing in wholistic medicine owns the store. She said to take Lexi off of all dairy to see if it helps. We took her off of dairy, switched her to soy and are crossing her fingers that the ear infection goes away.
Lexi has an appointment tomorrow, July 5th, for her 1 year check up. We will know her stats then, and find out if her ear infection is going away. We will also be referred to an ENT I would like to inquire about getting Lexi tested for allergies.Other than all of this ear infection nonsense, Lexi is doing great. She's still tiny, and people still stare at her like she is a 6 month old, and practically fall out of their seat when they see her walk around. And yes, she has practically perfected walking despite having the longest ear infection on record. As of last week Lexi was 15 lbs 9 oz. She is still in 3-6 months clothing, and we have gotten such great use out of all of her clothes. She grows so slowly, that she wears every single outfit she has, definitely getting our money's worth on the clothing!
FAST-FORWARD TO TODAY...
Today, November 17 2009, Lexi is a happy and healthy 3 1/2 year old who loves Thumbelina, food, and anything pink. She has had 2 sets of tubes in her ears due to frequent ear infections and the milk was not an allergy. Still to this day, Lexi has a hard time with ear infections, but all in all she is a very healthy, smart, beautiful princess who can recite her ABC's and count to 15.Lexi is still small; she is 26 pounds and 34 inches tall, but she makes up for her size in her attitude. Lexi is truly one of God’s precious miracles and I am thankful for my stubbornness to have a family despite the odds that were stacked up against me! Take me back to Lissa's World.
28 ounces: Alexi's Story (Part 2)
LEXI IS HOME!
Hey guys!!! Sorry it took so long to send an update out. LEXI IS HOME!!! She came home August 27th and she was sent home on a monitor that alarms if her heart rate drops or is too high or if she has an apnea spell.
Lexi had her first doctor appointment with the pediatrician last week and he said that besides her being tiny, she looks nice and healthy! She weighed 3 lb 13.5 oz and was 15 1/2 inches long!
Lexi also had an appointment with the eye doctor and she has stage 1 ROP- retinopathy of prematurity.
Lexi had a follow up appointment today with the eye doctor and she said that she is pleased with how her eyes are looking. The ROP is even more mild than it was last week. There is a real good chance that she will outgrow the disease and have no lasting effects from it.
Monday is another appointment with the pediatrician and they are going to give her the first set of immunizations and vaccines. I cannot wait to see how much she weighs at this appointment! I have to wake Lexi every three hours to eat, but she has been wanting food halfway in between feedings a lot, and I'm assuming that means she is going through a growth spurt.
She is a great baby! Poor thing, though, she is very gassy, I've been going through lots of gas drops, which seem to help her a lot.
Well, Lexi is starting to wake up. I will promise to try and update you all more frequently! I'm so glad she's home!!!!
September 11, 2006Hey guys! Lexi had her 2 month check up and got her 3 shots today. She was not happy at all! I got sick over it too, my stomach was so upset by the time everything was all said and done. But it’s over now, thank goodness!
The doctor said that Lexi looks like a nice healthy baby! Her weight is up to 4 lb. 15 oz!!! One more ounce and she's a 5 pounder!!!! And she is 16 1/2 inches long.
Just wanted to let you all know how she's turning into a little chub!
October 7, 2006
Hi guys, sorry it’s taken so long to update. As you can imagine, I have been really busy! Lexi is off of her apnea monitor. She came off of her monitor on September 26th, the day after my original due date. The doctor said that she had no true episodes of apnea, just false alarms due to her breathing shallow and he is very pleased with her progress!
The ROP (retinal eye disease) is almost completely gone and the doctor said that Lexi most likely outgrow it completely (she is 99% sure) with no residual side effects!
Lexi now weighs 6 lbs 8 oz and the doctor said she is really healthy! Lexi has developed a slight case of colic though. She is fussy most times that she is awake and there is not really much that helps to calm her. The dr said to just hold her and swaddle her as much as possible. My mom suggested I get a snuggli (baby carrier that you wear) and I have. I got it yesterday. So far it is working great! Lexi is sleeping right now while I am wearing it. She looks so sweet and peaceful!
Lexi is going to be starting her first round in a series of 7 shots of the drug synagis which is to help her out during this winter with the RSV virus. Its an upper respiratory virus which can be dangerous, even deadly in babies, especially preemies. She gets her first shot on October 19th. The only side effect that she should have is a sore leg from where she got the shot and I am allowed to give her a little Tylenol before she gets her shot to help ease the pain.
I really can't complain here, Lexi is doing awesome and she is truly a little miracle! She is healthy as ever! And as fussy as she is I have stocked up on Tylenol and am just waiting for her to grow out of it, and the doctor said that she should within a couple of months.
October 19, 2006
Lexi had her eyes checked on Monday for the Retinopathy of Prematurity that she has been dealing with. It is gone!!! The eye doctor was very pleased with what she saw, said that Lexi's eyes are perfect and look just like newborn eyes! We don't have to go for another eye checkup until 6 months from now.
Tuesday Lexi rolled over for the first time! She was laying on her tummy with her hands under her chest, so she had a bit of help to begin with, but it counts for going in the baby book.
Today Lexi had her pediatrician appointment for her Synagis shot (shot to help out with RSV season- nasty bronchial respiratory infection that lands many infants in the hospital). She will get the shots every 28-31 days all the way into March or April. She did real well with the shot. I gave her some Tylenol first and it helped her to sleep a bit afterwards. Poor girl, she was exhausted after the shot.Lexi weighs 6 lb 12 oz now and is 18 3/4 inches long. She's fitting into some of her newborn clothes now, and outgrowing those preemie clothes finally! She is sleeping for longer periods of time now, about 4 hours at a time and eating more too. Lexi is also wanting to play more and she loves her play mat that has the toy bar. She is starting to interact a whole lot more now and is so much fun! I love watching her look at everything so curiously! She is not very colicky now (well... as of a couple of days ago, I won't press my luck just yet).
October 26, 2006Not much of an update really, nothing too new. You will see in the pictures though that Lexi is so curious now, and she smiles, and likes to play a bit too!
November 6, 2006
Hi guys!! Lexi turned 4 months old on Friday, and she had her 4 month check up and shots. She did much better this time with her shots.
Lexi weighs 7 lb 11.5 oz and is 19 1/2 inches long now. She is healthy as a horse, and she is progressing fast! The pediatrician is very pleased with her growth and maturity. Lexi is getting to hold her head up for a little while now on her own, and she is smiling true smiles… and she just might be in the very beginning stages of teething. She is drooling a lot more than before and is starting to chew on everything. We were given the go ahead to start trying rice cereal!
November 11, 2006Hey guys! I'm excited to report that Lexi had her first bite of single grain rice cereal on Wednesday! It was very messy feeding her with a spoon, but we had fun.
Now that Lexi is eating cereal, she will be packing on the pounds... she's going to be a chunky monkey before we know it! She is just an absolute joy! Lexi is talking a lot more, she loves to hear her own voice. Haha! No complaints here. I just wish I could see everyone in person so I can show off my little princess. She is just beautiful!
November 22, 2006
Last Thursday Lexi had her doctor appointment for her RSV shot (respiratory virus vaccine), and she did real well with the shot. She only cried for a couple of minutes, and then the poor thing slept for 2 days. Lexi now weighs 8 lb 9 oz and is still healthy as ever. The pediatrician gave us the go ahead to start her on fruits and veggies and her first fruit she tried was bananas. She really liked the bananas. She has also just tried pears yesterday and likes them too. Lexi wants cereal in all of her bottles now, she's a little piggy. The cereal is awesome!!! I am now able to get a 6 hour stretch of sleep, which is the best thing ever!
November 27, 2006
We had a great Thanksgiving! Lexi got to visit with a lot of family. She had a very busy but fun Thanksgiving holiday and she's worn out!
So far Lexi has tried bananas, applesauce, prunes, and sweet potatoes. She loves the bananas, likes the applesauce after she gets over the initial tartness, is not too sure about the sweet potatoes yet, and absolutely does not like the prunes one bit. I have been feeding her a little bit of the food with the spoon, which she does real well with, and will make her smoothies with her formula, cereal and fruit. She chows down big time on the smoothies.Lexi is now using the baby bath tub that goes inside of the regular tub... I call it the big girl bath tub... and she loves it!
December 6, 2006
Lexi was sick on Monday with a tummy bug. She didn't eat much all day and what she did eat came right back up. Yesterday she slept a lot, and was a bit crabby, but today she is back to her charming self and eating like a little piggy.
Lexi is getting so big! Well, as far as weight goes, I don't know how much she weighs. Maybe around 9 1/2 lb or so. She is rolling over more, and trying so hard to crawl a little, or at least to move. She is one strong little girl! Lexi is always happy, smiles at everything, and talks away like nobody's business.
December 11, 2006
First off, Lexi is feeling much better from last week's tummy bug. She is so over it. She has been crabby, and I thought it was because she was still feeling a bit woozy, but it is because she is teething now. I've been rubbing her gums with Orajel, giving her a bit of Tylenol here and there, and giving her cold wet wash cloths to chew on. The teething toys are too big for her tiny little mouth.
Lexi is now 5 months, 1 week and 1 day old and her adjusted age is 2 months 2 weeks and 2 days old. (adjusted age is age she would have been if full term, going by my due date of 9-25); She is a little bit ahead of schedule if going by the adjusted age to be teething, but she is pretty much on target from what I have read if going by her actual age. Lexi has actually been almost on target for a lot of milestones from reading about what to expect and when for newborns. She is very strong in her legs, and is able to stand with some assistance for a few seconds at a time (lightly holding her waist), she can roll over from tummy to back with almost no problem now, she follows objects with her eyes, she looks at you when you talk to her.
Lexi is grabbing things like my shirt, batting at toys, talking up a storm and using many different sounds. She is an extremely smart baby, and I'm not JUST saying that because she's my daughter, but because she is on target for her real age and ahead of schedule for her adjusted age. She's acting like a full term baby. I can gush about Lexi all day long. We are just so incredibly proud of her and feel so blessed this holiday season to have a happy healthy baby. ->
28 ounces: Alexi's Story (Part 1)
November 17th is Prematurity Awareness Day. I am sure everyone has heard of the March of Dimes Foundation and seen the advertisements regarding premature babies, however until you have had encountered one of these tiny miracles first hand, you will never fully grasp just how precious life really is.
On July 3, 2006, I gave birth to my daughter Alexi. I knew from early on in my pregnancy that Alexi would be premature, but I never could have imagined that she would be born at 28 weeks, weighing in at only 1 pound 12 ounces and measuring 13 inches long.
I had just found out earlier the year before that I had developed Membranous Glomerulonephritis, a kidney disease specifically related to Lupus. My nephrologist wanted to put me on heavy chemotherapy drugs, however warned me of infertility. I was given two options: start the medications or start a family. I chose to start a family. Please join me in my journey from Alexi's first breath to her first birthday.
NICU DAYS
First day in this world- click here for video
July 11, 2006
Alexi's only 1 lb and something ounces... so she's a tiny little bugger! I got to hold her yesterday! Alexi is doing really well, she is off a lot of her tubes and wires!
July 13, 2006
Alexi is 10 days old. She had a very minor setback to where she is back on her CPAP (the oxygen), but she is breathing mostly on her own. Lexi is only on it to help her so she doesn't have to work so hard. The doctors are adding some extra calories to my milk to help her gain more weight. And they have her lying on a wedge to help with acid reflux. Lexi is a fighter though, and she is doing real well!!
I got to hold her today for 45 minutes, and she let out all sorts of little coos, it was sooo cute!! I will be able to hold her more once she reaches 1,000 grams, and we can't wait!
July 15, 2006
Lexi had a tiny bit of a set back today; she is on antibiotics due to a slight infection. She will be alright, but she needs to just get over this little bit of infection that she is battling. The nurses said that she will probably be on antibiotics for just a couple of days.
I held Lexi for an hour today, and it was great. She was so content just cooing away. Lexi is now 1 lb 10.6 oz. She's almost back up to birth weight.
July 21, 2006
Alexi is 2 weeks and 4 days old. Since she's been born, she has had 2 blood transfusions (one on July 6th and one on July 17th) and a platelet transfusion (July 6th). Both transfusions have been successful and for the second transfusion, she received her dad’s blood!
Lexi was put on antibiotics last week for a slight infection, but is better now, and her last round of antibiotics was today at 4pm. She is through with the antibiotics. Lexi lost a little bit of weight at first and was having a hard time keeping weight on. She was not completely digesting her food either, but as of two days ago, things are turning around and looking better! All of her food is being digested, and she is tolerating her feedings well, and she is gaining weight now!
Tuesday Lexi was finally above her birth weight- 1 lb 12.2 oz. Wednesday she was 1 lb 13.4 oz and as of today she was 1 lb 14 ounce. She is doing very well and the nurses and NICU doctors are pleased with her progress at this time. Lexi is getting some cheeks and even a little bit of a chin!!!
Lexi will be able to come home most likely in the middle of September. They do not determine when she can come home based on her weight, but on her progress. Even when she comes home from the hospital, we are going to have to be careful with her for a while. The nurses were saying that Lexi's immune system is very weak and she will be coming home from the hospital during flu season. She will be a candidate for a special shot for preventing the flu which will be given monthly. It's recommended that she stay away from large crowds until the end of flu season and to make sure that whoever comes in contact with Lexi is healthy.
I go into the NICU to see Lexi at 2pm and 8pm every day. At the 2pm feeding I stand there looking at her, she holds my finger and I talk to her. She is so cute, she just looks at me and it’s amazing that my voice can be so soothing to her. At the 8pm feeding, I get to hold her for an hour. I love this time. I sit there with her and hold her so close, and I just talk to her. She makes all sorts of coos and she sneezes and just all those baby sounds make me melt.
July 23, 2006
Lexi is doing well. Her weight is up to 2 lbs 0.8 oz as of today, and she keeps on gaining. She is still doing well and her feedings are up to a half ounce each feeding. I can see Lexi starting to fill out a little!
July 26, 2006
Lexi is doing really well and gaining weight a lot quicker now. It seems once she hit the 2 lb mark, she started gaining quicker. The beginning of the week Lexi was 2 lb 0.8oz. She went up to 2 lb 2 oz...2 lb 3.9 oz...2 lb 4.8 oz... and today she is up to 2 lb 5.6 oz. The doctors are really pleased with her progress so far. We are finally able to hold Alexi twice a day now because she has gained enough weight.
Lexi gets a shot of Procrit on Mondays, Wednesdays and Fridays to help her make red blood cells. Preemies have a hard time making red blood cells on their own and this drug will help prevent Lexi from needing to get another blood transfusion. The doctors said that too many transfusions could result in her rejecting the transfusions later, so they like to save the transfusions for when they are absolutely needed.
I am starting to get my symptoms of lupus back, and need to go back on my medication. I am unable to breastfeed because the medicine passes into the milk and there is contraversy over whether or not it could cause dammage to the retina.
We have decided to go through a milk donation center to get breastmilk for Alexi. The lactation nurse, NICU doctor and nurse at the hospital spoke with me about the pros of giving Lexi breastmilk vs just formula so we feel confident in our decision to use donor milk.
With breastmilk, Lexi will most likely be able to come home from the hospital sooner. Breastmilk helps with allergies, colds and upper respiratory diseases, helps to prevent bowel problems common in preemies, helps to give them immunity and a whole host of other things.
August 6, 2006
Lexi is up to 2 lbs 8.4 oz today and has been doing really well. They keep having to turn her isolette bed down because she is starting to be able to maintain her own temperature a little better. Her nasal cannula (the oxygen prongs in her nose) is turned down also to 0.25, which is real low, almost non existant. Her weight has been slowly getting up there. When Lexi reaches 1300 grams, we will be able to hold her at every feeding. Right now we are only able to hold her twice a day. Also, soon they are going to try bottle feeding on Lexi. I told the nurses that they NEED to contact me when they are going to do so. I don't care what time of day or night it is, I want to be there.
We painted Lexi’s room light purple last week and put it all together and decorated it this week. It is sooo cute!! I Now, since we put her room together, I've been a little bit depressed. I just can't wait for her to come home. Only one and a half more months, hopefully sooner! I wish that the time would just fly by.
We picked out a pediatrician the other day. And we looked at car seats and strollers. Because Lexi is going to be under 5 lbs when she gets discharged from the NICU, she needs a car seat that is designed for 4 lb babies. We found one that we will be getting at Babies R Us.
And then today we took an infant CPR class. We've been real busy trying to get everything done!
August 11, 2006
Lexi started bottle feeding this past Monday, and we are feeding her by bottle twice a day. She still has her feeding tube in, but she's giving bottle feeding her best effort.
Lexi has also been taken off of her nasal cannula (oxygen) and is breathing completely on her own. It's so good to be able to see her without all of this stuff all over her!!! They took the oxygen off of her on Wednesday night. And.... Lexi had her first bath too!
Lexi is really starting to get her own personality. If she doesn't like something, she will let you know! It's soo funny! And she smiles (or maybe its gas), and wrinkles her nose at us. Lexi is up on her weight too! She had a big jump in weight from yesterday to today. Yesterday she was 2 lb. 10.6 oz, and today she is up to 2 lb 13.3 oz!
August 16, 2006
Lexi is doing awesome! She's getting to be a big girl... meaning more mature. The doctors are really impressed with how well she is doing. Weight wise, she's still a little peanut but she's coming along!
Lexi is up to 3 lb 3.3 today! Yesterday she had a little bit of quick breathing, and the drs checked her out. They said that she has a little bit of a heart murmur, but it is nothing to get very worried about. The drs are just going to keep an eye on it, and said that lots of people have heart murmurs. Most of the time it is no big deal. She hasn't had any more episodes of quick breathing since.
Lexi is now taking the bottle at every feeding and she loves her bottle. She is usually finished with her bottle within 15 minutes. The doctors said that Lexi will most likely get her feeding tube taken out within a week. They just want to make sure that she continues to tolerate the bottle feedings before they take the tube out.
Lexi has quite a reputation here at the NICU. She's known as a little feisty one. And the nurses love it. They all fight over who gets to take care of her. They said that she's got a cute little personality :)
August 21, 2006
Lexi is doing great! I had some cute pictures so I just wanted to send them out. She is going to be home in a couple of weeks and we are so excited! I can't wait!
Lexi is up to 3 lb 6.6 oz tonight and she's a little piggy, she loves her bottles! She was still hungry tonight after she was finished with her bottle.
Not much else to report, just that she's a feisty little thing! ->
On July 3, 2006, I gave birth to my daughter Alexi. I knew from early on in my pregnancy that Alexi would be premature, but I never could have imagined that she would be born at 28 weeks, weighing in at only 1 pound 12 ounces and measuring 13 inches long.
I had just found out earlier the year before that I had developed Membranous Glomerulonephritis, a kidney disease specifically related to Lupus. My nephrologist wanted to put me on heavy chemotherapy drugs, however warned me of infertility. I was given two options: start the medications or start a family. I chose to start a family. Please join me in my journey from Alexi's first breath to her first birthday.
NICU DAYS
First day in this world- click here for video
July 11, 2006Alexi's only 1 lb and something ounces... so she's a tiny little bugger! I got to hold her yesterday! Alexi is doing really well, she is off a lot of her tubes and wires!
July 13, 2006
Alexi is 10 days old. She had a very minor setback to where she is back on her CPAP (the oxygen), but she is breathing mostly on her own. Lexi is only on it to help her so she doesn't have to work so hard. The doctors are adding some extra calories to my milk to help her gain more weight. And they have her lying on a wedge to help with acid reflux. Lexi is a fighter though, and she is doing real well!!
I got to hold her today for 45 minutes, and she let out all sorts of little coos, it was sooo cute!! I will be able to hold her more once she reaches 1,000 grams, and we can't wait!
July 15, 2006
Lexi had a tiny bit of a set back today; she is on antibiotics due to a slight infection. She will be alright, but she needs to just get over this little bit of infection that she is battling. The nurses said that she will probably be on antibiotics for just a couple of days.
I held Lexi for an hour today, and it was great. She was so content just cooing away. Lexi is now 1 lb 10.6 oz. She's almost back up to birth weight.
July 21, 2006
Alexi is 2 weeks and 4 days old. Since she's been born, she has had 2 blood transfusions (one on July 6th and one on July 17th) and a platelet transfusion (July 6th). Both transfusions have been successful and for the second transfusion, she received her dad’s blood!
Lexi was put on antibiotics last week for a slight infection, but is better now, and her last round of antibiotics was today at 4pm. She is through with the antibiotics. Lexi lost a little bit of weight at first and was having a hard time keeping weight on. She was not completely digesting her food either, but as of two days ago, things are turning around and looking better! All of her food is being digested, and she is tolerating her feedings well, and she is gaining weight now!
Tuesday Lexi was finally above her birth weight- 1 lb 12.2 oz. Wednesday she was 1 lb 13.4 oz and as of today she was 1 lb 14 ounce. She is doing very well and the nurses and NICU doctors are pleased with her progress at this time. Lexi is getting some cheeks and even a little bit of a chin!!!
Lexi will be able to come home most likely in the middle of September. They do not determine when she can come home based on her weight, but on her progress. Even when she comes home from the hospital, we are going to have to be careful with her for a while. The nurses were saying that Lexi's immune system is very weak and she will be coming home from the hospital during flu season. She will be a candidate for a special shot for preventing the flu which will be given monthly. It's recommended that she stay away from large crowds until the end of flu season and to make sure that whoever comes in contact with Lexi is healthy.
I go into the NICU to see Lexi at 2pm and 8pm every day. At the 2pm feeding I stand there looking at her, she holds my finger and I talk to her. She is so cute, she just looks at me and it’s amazing that my voice can be so soothing to her. At the 8pm feeding, I get to hold her for an hour. I love this time. I sit there with her and hold her so close, and I just talk to her. She makes all sorts of coos and she sneezes and just all those baby sounds make me melt.
July 23, 2006
Lexi is doing well. Her weight is up to 2 lbs 0.8 oz as of today, and she keeps on gaining. She is still doing well and her feedings are up to a half ounce each feeding. I can see Lexi starting to fill out a little!
July 26, 2006Lexi is doing really well and gaining weight a lot quicker now. It seems once she hit the 2 lb mark, she started gaining quicker. The beginning of the week Lexi was 2 lb 0.8oz. She went up to 2 lb 2 oz...2 lb 3.9 oz...2 lb 4.8 oz... and today she is up to 2 lb 5.6 oz. The doctors are really pleased with her progress so far. We are finally able to hold Alexi twice a day now because she has gained enough weight.
Lexi gets a shot of Procrit on Mondays, Wednesdays and Fridays to help her make red blood cells. Preemies have a hard time making red blood cells on their own and this drug will help prevent Lexi from needing to get another blood transfusion. The doctors said that too many transfusions could result in her rejecting the transfusions later, so they like to save the transfusions for when they are absolutely needed.
I am starting to get my symptoms of lupus back, and need to go back on my medication. I am unable to breastfeed because the medicine passes into the milk and there is contraversy over whether or not it could cause dammage to the retina.
We have decided to go through a milk donation center to get breastmilk for Alexi. The lactation nurse, NICU doctor and nurse at the hospital spoke with me about the pros of giving Lexi breastmilk vs just formula so we feel confident in our decision to use donor milk.
With breastmilk, Lexi will most likely be able to come home from the hospital sooner. Breastmilk helps with allergies, colds and upper respiratory diseases, helps to prevent bowel problems common in preemies, helps to give them immunity and a whole host of other things.
August 6, 2006Lexi is up to 2 lbs 8.4 oz today and has been doing really well. They keep having to turn her isolette bed down because she is starting to be able to maintain her own temperature a little better. Her nasal cannula (the oxygen prongs in her nose) is turned down also to 0.25, which is real low, almost non existant. Her weight has been slowly getting up there. When Lexi reaches 1300 grams, we will be able to hold her at every feeding. Right now we are only able to hold her twice a day. Also, soon they are going to try bottle feeding on Lexi. I told the nurses that they NEED to contact me when they are going to do so. I don't care what time of day or night it is, I want to be there.
We painted Lexi’s room light purple last week and put it all together and decorated it this week. It is sooo cute!! I Now, since we put her room together, I've been a little bit depressed. I just can't wait for her to come home. Only one and a half more months, hopefully sooner! I wish that the time would just fly by.
We picked out a pediatrician the other day. And we looked at car seats and strollers. Because Lexi is going to be under 5 lbs when she gets discharged from the NICU, she needs a car seat that is designed for 4 lb babies. We found one that we will be getting at Babies R Us.
And then today we took an infant CPR class. We've been real busy trying to get everything done!
August 11, 2006Lexi started bottle feeding this past Monday, and we are feeding her by bottle twice a day. She still has her feeding tube in, but she's giving bottle feeding her best effort.
Lexi has also been taken off of her nasal cannula (oxygen) and is breathing completely on her own. It's so good to be able to see her without all of this stuff all over her!!! They took the oxygen off of her on Wednesday night. And.... Lexi had her first bath too!
Lexi is really starting to get her own personality. If she doesn't like something, she will let you know! It's soo funny! And she smiles (or maybe its gas), and wrinkles her nose at us. Lexi is up on her weight too! She had a big jump in weight from yesterday to today. Yesterday she was 2 lb. 10.6 oz, and today she is up to 2 lb 13.3 oz!
August 16, 2006
Lexi is doing awesome! She's getting to be a big girl... meaning more mature. The doctors are really impressed with how well she is doing. Weight wise, she's still a little peanut but she's coming along!
Lexi is up to 3 lb 3.3 today! Yesterday she had a little bit of quick breathing, and the drs checked her out. They said that she has a little bit of a heart murmur, but it is nothing to get very worried about. The drs are just going to keep an eye on it, and said that lots of people have heart murmurs. Most of the time it is no big deal. She hasn't had any more episodes of quick breathing since.
Lexi is now taking the bottle at every feeding and she loves her bottle. She is usually finished with her bottle within 15 minutes. The doctors said that Lexi will most likely get her feeding tube taken out within a week. They just want to make sure that she continues to tolerate the bottle feedings before they take the tube out.
Lexi has quite a reputation here at the NICU. She's known as a little feisty one. And the nurses love it. They all fight over who gets to take care of her. They said that she's got a cute little personality :)
August 21, 2006Lexi is doing great! I had some cute pictures so I just wanted to send them out. She is going to be home in a couple of weeks and we are so excited! I can't wait!
Lexi is up to 3 lb 6.6 oz tonight and she's a little piggy, she loves her bottles! She was still hungry tonight after she was finished with her bottle.
Not much else to report, just that she's a feisty little thing! ->
Saturday, November 14, 2009
How to buy gas with your PayPal Card
Hi there everyone! If there is one thing more stressful than being broke, it is trying to figure out why the last little bit of money I have is unable to be used in my gas tank. It's my money, so what is the issue? I am here to explain in less than 3 minutes what took me over 1 hour and 3 representatives to find out today: how to buy gas with your PayPal card. Please read beyond these easy to follow instructions for an explanation of how I stumbled across this absurd topic.
First of all, you will want to know how much money is in your PayPal account. If the amount of money in your account is at least $75.00, you are able to pay at the pump as a debit purchase. If the amount of money in your account is $35.000 or more, you are able to purchase gas at the pump in the form of credit. For any account balance under $35.00, you must prepay for your gas inside of the gas station in the form of a predetermined credit amount.
Here is how I became an expert in PayPal gas purchases:
Today, my PayPal account had a balance of $17.23 and my gas tank was running on fumes. My family and I had just left our home and were on our way to a family gathering. We pulled into the gas station and up to the pump to replenish our supply and be on our merry way. My husband ran the PayPal card through as a debit purchase through the pay at pump option. The message that followed read, "see cashier for payment". He tried running the card through as credit and the same message appeared. A bit frustrated, he sent me into the gas station to prepay for the gas. The cashier swiped the PayPal card as credit, and the card was giving a declined message.
I contacted PayPal to recheck the balance on the card. We still had $17.23 on the card. I chose the option to speak with a representative so that I could find out what was going on and why I was unable to use my money at the pump. I spoke with a nice young lady who spoke very broken English and apologized several times for the inconvenience we had experienced. She insisted that we should be able to use the PayPal card to pay for our gas purchase, however, the gas station makes the ultimate decision and they were not allowing us to pump any gas.
Within the first couple of minutes of being on the phone with the representative, I felt like I may have been explaining the situation incorrectly. I was not getting anywhere fast with the representative, so I handed the phone to my husband to try and handle the situation. Turns out, it wasn't me, it was her. After being placed on hold 3 times, the representative had decided that she would transfer us to a specialist to help with the situation.
While waiting for a specialist, we drove back home so that our daughters would not be cooped up in the car for too long. The girls are age 6 and age 3, and any time frame over 5 minutes is an eternity to them!
After a lengthy hold time, a PayPal specialist with a foreign accent different from the first greeted my husband, and told him that the reason we were unable to purchase gas at the pump was because there is a certain amount of money that the gas station places on hold when a pay at pump transaction is processed. My husband asked the specialist how much money is required for the hold. She did not know the amount, however, she would be able to transfer him to another specialist who deals primarily with debit purchases. Wonderful.
Finally, after another 10 minute hold for another specialist, a woman with an American accent answered the phone and all within 3 minutes, she explained to us the simple steps I had explained above: a balance of $75.00 or more, you can pay at the pump as a debit purchase; $35.00 balance or more, you can pay as a credit purchase at the pump; a balance less than $35.00 must be paid as a specific amount run through as credit in the store. My husband asked why it took an hour to find the answer to this and the representative could only apologize and say that she did not know as this is a common problem with gas stations.
Kind of makes you wonder... why isn't everyone at PayPal trained at handling this "common problem"? I almost want to send them a bill for the Tylenol my husband and I had to take after this whole ordeal. Is that even possible? Can we?
Be sure to check out Lissa's World for other useful information!
First of all, you will want to know how much money is in your PayPal account. If the amount of money in your account is at least $75.00, you are able to pay at the pump as a debit purchase. If the amount of money in your account is $35.000 or more, you are able to purchase gas at the pump in the form of credit. For any account balance under $35.00, you must prepay for your gas inside of the gas station in the form of a predetermined credit amount.
Here is how I became an expert in PayPal gas purchases:
Today, my PayPal account had a balance of $17.23 and my gas tank was running on fumes. My family and I had just left our home and were on our way to a family gathering. We pulled into the gas station and up to the pump to replenish our supply and be on our merry way. My husband ran the PayPal card through as a debit purchase through the pay at pump option. The message that followed read, "see cashier for payment". He tried running the card through as credit and the same message appeared. A bit frustrated, he sent me into the gas station to prepay for the gas. The cashier swiped the PayPal card as credit, and the card was giving a declined message.
I contacted PayPal to recheck the balance on the card. We still had $17.23 on the card. I chose the option to speak with a representative so that I could find out what was going on and why I was unable to use my money at the pump. I spoke with a nice young lady who spoke very broken English and apologized several times for the inconvenience we had experienced. She insisted that we should be able to use the PayPal card to pay for our gas purchase, however, the gas station makes the ultimate decision and they were not allowing us to pump any gas.
Within the first couple of minutes of being on the phone with the representative, I felt like I may have been explaining the situation incorrectly. I was not getting anywhere fast with the representative, so I handed the phone to my husband to try and handle the situation. Turns out, it wasn't me, it was her. After being placed on hold 3 times, the representative had decided that she would transfer us to a specialist to help with the situation.
While waiting for a specialist, we drove back home so that our daughters would not be cooped up in the car for too long. The girls are age 6 and age 3, and any time frame over 5 minutes is an eternity to them!
After a lengthy hold time, a PayPal specialist with a foreign accent different from the first greeted my husband, and told him that the reason we were unable to purchase gas at the pump was because there is a certain amount of money that the gas station places on hold when a pay at pump transaction is processed. My husband asked the specialist how much money is required for the hold. She did not know the amount, however, she would be able to transfer him to another specialist who deals primarily with debit purchases. Wonderful.
Finally, after another 10 minute hold for another specialist, a woman with an American accent answered the phone and all within 3 minutes, she explained to us the simple steps I had explained above: a balance of $75.00 or more, you can pay at the pump as a debit purchase; $35.00 balance or more, you can pay as a credit purchase at the pump; a balance less than $35.00 must be paid as a specific amount run through as credit in the store. My husband asked why it took an hour to find the answer to this and the representative could only apologize and say that she did not know as this is a common problem with gas stations.
Kind of makes you wonder... why isn't everyone at PayPal trained at handling this "common problem"? I almost want to send them a bill for the Tylenol my husband and I had to take after this whole ordeal. Is that even possible? Can we?
Be sure to check out Lissa's World for other useful information!
Monday, November 9, 2009
Personal Medical Affidavit: My Disability Determination Process (SSD)
As promised, here are some excerpts from my personal medical affidavit. **Please note** I have not yet been approved for disability. You are going through the process with me. I apologize in advance, as the letter doesn't flow well. There are several more personal paragraphs that have been cut out to protect myself from humility.
"
To whom it may concern in Disability Determination:
My name is Melissa and I am 27 years old. I would like to write to you to help you to understand my disabilities and how they have an impact on my life every day. I have many different roles that I must satisfy in my life and having disabilities limits my abilities to perform these roles.
I was diagnosed with Lupus (SLE) in September, 1999 after several months of being sick and told that I had amoebas, giardia, parasites, mononucleosis, and Lyme disease. I was just entering my senior year of high school and was hit with this diagnosis and worse yet, the feeling of extreme fatigue, body aches, depression, and questioning why I was the one to become sick. It has been a major struggle physically and mentally since being diagnosed.
Since being diagnosed with Lupus, I have added several other diseases to my list. I have Fibromyalgia, Membranous Glomerulonephritis, Herniated discs, and Narcolepsy as well. Each illness has symptoms or sub-illnesses that create more of a difficult time for me. I will explain each of these symptoms and sub-illnesses in detail.
With Lupus, I also have Reynaud’s Phenomenon. Reynaud’s Phenomenon is when your circulation is poor and your extremities turn red, white and blue and get numb and tingly. In my case, my Reynaud’s Phenomenon was so severe that I had to move from my home state of Connecticut to Florida for warmer weather. While I was in Connecticut I had developed ulcers on my fingertips that were so painful that I did not have use of my fingers. The ulcers would ooze green and brown slimy, creamy puss, and keeping the ulcers clean was such a task as they took 9 months to heal. I still have scars on my right pointer and middle finger from my ulcers and every now and then they start to reform. Luckily, the warm weather of Florida allows me to stop the ulcers before they get too painful.
Lupus has caused me to develop Acid Reflux Disease. I have a burning sensation that goes from the pit of my stomach into my throat that never quite goes away. At times the burning is so intense that I end up throwing up a little bit in my mouth. Anything I eat or drink causes the burning sensation. Something as simple as lying down causes the burning sensation. Although this illness is not a disability at all, it is very painful and in the larger picture of things, adds to all of my pain.
Lupus has caused me to develop an on again off again pattern of Idiopathic thrombocytopenic purpura (ITP). I bruise very easily most of the time and my platelet count is sometimes very low, which means that I have a hard time clotting if I get a cut and start bleeding.
Lupus has caused me to go through a period of time in the beginning of 2009 where I had lost half of the hair on my head. I had lost so much hair that I bought a wig to wear. Hair is just hair until you are the one losing it. Being a woman, losing hair is devastating. My self confidence has been shot down. Beauty may only be skin deep, but when half of your head is bald and you do not know when your hair will stop falling out or if it will even re-grow, that is one of the most depressing feelings I have ever experienced. My hair is growing back now, and I have 4 inch sections that stick out in cowlicks all over my head. I am very thankful that my hair is growing back, however I still suffer from low self esteem from the disaster that I call my hair. I am afraid that my hair will go through another period of time where it will fall out again, and I will have to wear a wig again.
From Lupus, I have rashes on my arms and on my face. These rashes are red, bumpy, scaly, and itchy. I have tried creams, foams, washes and nothing helps to alleviate the itching and take away the rash. This is another issue with Lupus that causes me to be depressed and have low self esteem. I have had people ask me if I have poison ivy, if I got stung by a jelly fish, or if I am having an allergic reaction to something. Having people constantly ask me why my face and arms are red, bumpy and scaly is horrible, and it is just one more reminder that I cannot escape the Lupus. Sun exposure and UV lighting exasperate the rashes.
I experience joint pain daily from having Lupus. I have had pain in every single joint, including my toe joints. When I have joint pain, I feel as if my bones are being drilled into. The pain starts in the joint and I can feel the pain extend throughout the bone. My bones feel like they could break from the pressure that the pain causes. I have tried time and time again to explain in words what joint and bone pain feels like, however it is impossible to explain to a person without joint and bone pain what it feels like. I have days where I see any sort of physical activity, including walking, and I cry in anticipation of the pain that the activity will cause.
Fibromyalgia has caused my muscles to be in constant spasms. The muscles affected most are from my neck down to the back of my upper thighs. Sitting in any position for more than 5 minutes is so painful and I feel like I want to rip my spine and legs out. I know that sounds a bit extreme, but if you felt the pain and uncomfortable feelings that I feel you would say the same thing. Imagine having sunburn over a bruise. Now imagine someone scratching your skin on your sunburned bruise. Imagine this feeling constantly with no relief. This is how my whole back and thighs feel every second of every day. I do what I call the “hotdog”, I rotate constantly as if I’m a hotdog on a grill. I also get this deep down muscle burning sensations throughout the front of my thighs, my arms and my hips. Sometimes it is very hard to determine if the pain I’m feeling in my joint areas are coming from muscles, bones or both.
I have had headaches daily for 2 months because of muscle spasms in my neck. I have tried Tylenol, Head On, cool compresses, and hot compresses, along with a rice sack around my neck. Nothing at all helps my headaches.
I would like to thank you very much for taking the time to read my letter in regards to my disability case. Please contact me if you need any further information regarding my case.
Melissa Fairchild
Be sure to check out Lissa's World for other useful information!
"
To whom it may concern in Disability Determination:
My name is Melissa and I am 27 years old. I would like to write to you to help you to understand my disabilities and how they have an impact on my life every day. I have many different roles that I must satisfy in my life and having disabilities limits my abilities to perform these roles.
I was diagnosed with Lupus (SLE) in September, 1999 after several months of being sick and told that I had amoebas, giardia, parasites, mononucleosis, and Lyme disease. I was just entering my senior year of high school and was hit with this diagnosis and worse yet, the feeling of extreme fatigue, body aches, depression, and questioning why I was the one to become sick. It has been a major struggle physically and mentally since being diagnosed.
Since being diagnosed with Lupus, I have added several other diseases to my list. I have Fibromyalgia, Membranous Glomerulonephritis, Herniated discs, and Narcolepsy as well. Each illness has symptoms or sub-illnesses that create more of a difficult time for me. I will explain each of these symptoms and sub-illnesses in detail.
With Lupus, I also have Reynaud’s Phenomenon. Reynaud’s Phenomenon is when your circulation is poor and your extremities turn red, white and blue and get numb and tingly. In my case, my Reynaud’s Phenomenon was so severe that I had to move from my home state of Connecticut to Florida for warmer weather. While I was in Connecticut I had developed ulcers on my fingertips that were so painful that I did not have use of my fingers. The ulcers would ooze green and brown slimy, creamy puss, and keeping the ulcers clean was such a task as they took 9 months to heal. I still have scars on my right pointer and middle finger from my ulcers and every now and then they start to reform. Luckily, the warm weather of Florida allows me to stop the ulcers before they get too painful.
Lupus has caused me to develop Acid Reflux Disease. I have a burning sensation that goes from the pit of my stomach into my throat that never quite goes away. At times the burning is so intense that I end up throwing up a little bit in my mouth. Anything I eat or drink causes the burning sensation. Something as simple as lying down causes the burning sensation. Although this illness is not a disability at all, it is very painful and in the larger picture of things, adds to all of my pain.
Lupus has caused me to develop an on again off again pattern of Idiopathic thrombocytopenic purpura (ITP). I bruise very easily most of the time and my platelet count is sometimes very low, which means that I have a hard time clotting if I get a cut and start bleeding.
Lupus has caused me to go through a period of time in the beginning of 2009 where I had lost half of the hair on my head. I had lost so much hair that I bought a wig to wear. Hair is just hair until you are the one losing it. Being a woman, losing hair is devastating. My self confidence has been shot down. Beauty may only be skin deep, but when half of your head is bald and you do not know when your hair will stop falling out or if it will even re-grow, that is one of the most depressing feelings I have ever experienced. My hair is growing back now, and I have 4 inch sections that stick out in cowlicks all over my head. I am very thankful that my hair is growing back, however I still suffer from low self esteem from the disaster that I call my hair. I am afraid that my hair will go through another period of time where it will fall out again, and I will have to wear a wig again.
From Lupus, I have rashes on my arms and on my face. These rashes are red, bumpy, scaly, and itchy. I have tried creams, foams, washes and nothing helps to alleviate the itching and take away the rash. This is another issue with Lupus that causes me to be depressed and have low self esteem. I have had people ask me if I have poison ivy, if I got stung by a jelly fish, or if I am having an allergic reaction to something. Having people constantly ask me why my face and arms are red, bumpy and scaly is horrible, and it is just one more reminder that I cannot escape the Lupus. Sun exposure and UV lighting exasperate the rashes.
I experience joint pain daily from having Lupus. I have had pain in every single joint, including my toe joints. When I have joint pain, I feel as if my bones are being drilled into. The pain starts in the joint and I can feel the pain extend throughout the bone. My bones feel like they could break from the pressure that the pain causes. I have tried time and time again to explain in words what joint and bone pain feels like, however it is impossible to explain to a person without joint and bone pain what it feels like. I have days where I see any sort of physical activity, including walking, and I cry in anticipation of the pain that the activity will cause.
Fibromyalgia has caused my muscles to be in constant spasms. The muscles affected most are from my neck down to the back of my upper thighs. Sitting in any position for more than 5 minutes is so painful and I feel like I want to rip my spine and legs out. I know that sounds a bit extreme, but if you felt the pain and uncomfortable feelings that I feel you would say the same thing. Imagine having sunburn over a bruise. Now imagine someone scratching your skin on your sunburned bruise. Imagine this feeling constantly with no relief. This is how my whole back and thighs feel every second of every day. I do what I call the “hotdog”, I rotate constantly as if I’m a hotdog on a grill. I also get this deep down muscle burning sensations throughout the front of my thighs, my arms and my hips. Sometimes it is very hard to determine if the pain I’m feeling in my joint areas are coming from muscles, bones or both.
I have had headaches daily for 2 months because of muscle spasms in my neck. I have tried Tylenol, Head On, cool compresses, and hot compresses, along with a rice sack around my neck. Nothing at all helps my headaches.
I would like to thank you very much for taking the time to read my letter in regards to my disability case. Please contact me if you need any further information regarding my case.
Melissa Fairchild
Be sure to check out Lissa's World for other useful information!
Applying for Social Security Disability Benefits
Hello! Filing for disability is a major life change and can be scary. I thought that since I am applying for SSD and there are many others out there in my situation I would allow you into my world and take you along for the ride to disability determination. So, hold on to your seats and lets dig in!
First of all, I would like to give you a brief background on my situation. I was diagnosed with Lupus (SLE) in 1999, when I was going into my senior year of high school. Then, in 2002, came Fibromyalgia; 2005 was Membranous Glomerulonephritis; 2009 was Narcolepsy. Along the way I had bits and pieces of my illnesses form into new illnesses. My skin Lupus is called Tumid Lupus (TLE), I have Thrombocytopenia, Raynaud's syndrome, 3 herniated discs, mood swings and bouts of depression, and the list goes on and on. Like I said, I am trying to make this as brief as possible so we can get to the good stuff! If you want to know more about my illnesses, got to the Mayo Clinic or WebMD website. These two sites are full of fantastic information.
Okay, so back to the meat and potatoes... the process! First thing you will want to do is call around to every doctor, hospital and clinic that has treated you for your illnesses and request copies of your medical records and diagnostic tests (blood work, sleep studies, x-rays, etc.). Some providers will mail your records to you, however if you are able to, I would strongly suggest picking up the records yourself. Pick up a 3 ring binder and organizer tabs to organize your records in. I organized my records according to doctor, with the most recent documents first.
After gathering your records, contact the Social Security Office and request an appointment to apply for disability benefits. There are several ways of applying for disability: by phone, by internet application, by walk-in at your local office, or by office appointment. I preferred to call for an appointment and apply for disability benefits at my local Social Security Office. There is a lot of paperwork to fill out, and I did not want to leave out any important information.
When I called for an appointment I was given a date that was two weeks out, which I found was just the right amount of time to schedule follow up visits with my doctors and inform them of my decision to apply for disability benefits. I had downloaded and printed out a form for my rheumatologist to fill out called a Physical Residual Functional Assessment (SSA-4734-U8). This form is approved for use in Social Security Disability cases, and I thought, why not get the ball rolling? I also had asked my neurologist to write a letter to Social Security regarding my disability that he is treating me for. My doctors are all on board with my decision to apply for disability benefits, which is a must for your case.
Some other things to consider as evidence of your inability to work may be your attendance record at your employment, notarized letters from your caregivers and friends who witness how your disability affects your life, and a personal affidavit. I will post excerpts from my personal affidavit in the blog following this one, or you may click here to read it now.
The Social Security Office sent me forms to fill out ahead of time and bring with me to my appointment. I filled out the forms at my leisure and in the comfort of my own home. I was able to take my time and make sure that I filled everything out as accurately and descriptive as possible.
My appointment went well. The appointment lasted about 20 minutes, and because I had brought all of the necessary paperwork, my work history, medical records, social security card and other form of ID, there was no delay in processing my initial paperwork.
Since attending my first appointment, I have received additional paperwork to fill out. Social Security is very quick with this paperwork and I had received the packets within a week of my appointment. This paperwork (form SSA-3368-BK) required me to write in greater detail about how my disabilities affect my daily life, what I used to be able to do before becoming disabled that I am no longer able to do, and lists of my medications and any side effects. It is extremely important to fill out this paperwork and send it back to Social Security within 10 days of the date of the letter sent along with the paperwork.
So, for now, I sit here and wait! I have submitted my records, had my office appointment, my doctor appointments, written my personal affidavit, and have filled out all of the paperwork sent to me thus far.
Please stay tuned as I go through my disability application! I will post more as I learn more, and my ultimate goal is to hopefully help others like me!
For more useful information, please be sure to check out Lissa's World.
First of all, I would like to give you a brief background on my situation. I was diagnosed with Lupus (SLE) in 1999, when I was going into my senior year of high school. Then, in 2002, came Fibromyalgia; 2005 was Membranous Glomerulonephritis; 2009 was Narcolepsy. Along the way I had bits and pieces of my illnesses form into new illnesses. My skin Lupus is called Tumid Lupus (TLE), I have Thrombocytopenia, Raynaud's syndrome, 3 herniated discs, mood swings and bouts of depression, and the list goes on and on. Like I said, I am trying to make this as brief as possible so we can get to the good stuff! If you want to know more about my illnesses, got to the Mayo Clinic or WebMD website. These two sites are full of fantastic information.
Okay, so back to the meat and potatoes... the process! First thing you will want to do is call around to every doctor, hospital and clinic that has treated you for your illnesses and request copies of your medical records and diagnostic tests (blood work, sleep studies, x-rays, etc.). Some providers will mail your records to you, however if you are able to, I would strongly suggest picking up the records yourself. Pick up a 3 ring binder and organizer tabs to organize your records in. I organized my records according to doctor, with the most recent documents first.
After gathering your records, contact the Social Security Office and request an appointment to apply for disability benefits. There are several ways of applying for disability: by phone, by internet application, by walk-in at your local office, or by office appointment. I preferred to call for an appointment and apply for disability benefits at my local Social Security Office. There is a lot of paperwork to fill out, and I did not want to leave out any important information.
When I called for an appointment I was given a date that was two weeks out, which I found was just the right amount of time to schedule follow up visits with my doctors and inform them of my decision to apply for disability benefits. I had downloaded and printed out a form for my rheumatologist to fill out called a Physical Residual Functional Assessment (SSA-4734-U8). This form is approved for use in Social Security Disability cases, and I thought, why not get the ball rolling? I also had asked my neurologist to write a letter to Social Security regarding my disability that he is treating me for. My doctors are all on board with my decision to apply for disability benefits, which is a must for your case.
Some other things to consider as evidence of your inability to work may be your attendance record at your employment, notarized letters from your caregivers and friends who witness how your disability affects your life, and a personal affidavit. I will post excerpts from my personal affidavit in the blog following this one, or you may click here to read it now.
The Social Security Office sent me forms to fill out ahead of time and bring with me to my appointment. I filled out the forms at my leisure and in the comfort of my own home. I was able to take my time and make sure that I filled everything out as accurately and descriptive as possible.
My appointment went well. The appointment lasted about 20 minutes, and because I had brought all of the necessary paperwork, my work history, medical records, social security card and other form of ID, there was no delay in processing my initial paperwork.
Since attending my first appointment, I have received additional paperwork to fill out. Social Security is very quick with this paperwork and I had received the packets within a week of my appointment. This paperwork (form SSA-3368-BK) required me to write in greater detail about how my disabilities affect my daily life, what I used to be able to do before becoming disabled that I am no longer able to do, and lists of my medications and any side effects. It is extremely important to fill out this paperwork and send it back to Social Security within 10 days of the date of the letter sent along with the paperwork.
So, for now, I sit here and wait! I have submitted my records, had my office appointment, my doctor appointments, written my personal affidavit, and have filled out all of the paperwork sent to me thus far.
Please stay tuned as I go through my disability application! I will post more as I learn more, and my ultimate goal is to hopefully help others like me!
For more useful information, please be sure to check out Lissa's World.
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