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.
Showing posts with label Fibromyalgia. Show all posts
Showing posts with label Fibromyalgia. Show all posts
Thursday, December 3, 2009
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!
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 9, 2009
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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