Well, I felt pretty bad yesterday. I think I had a virus or something. James was sick the day before with fatigue and low grade fever. That's what I had yesterday. I think Violet may have it today, poor baby!
I wish my appointment was tomorrow. I just want to go already, it's SO hard to just wait! I made an appointment with a pediatric LLMD in PA for Elijah in April. I will mention Elijah's symptoms at my appointment in 2 weeks (from tomorrow!).
I don't have a lot to say, it's getting late and I'm getting ready for bed!
I'll end with the lyrics to one of my favorite songs....
Who taught the sun where to stand in the morning
Who told the ocean you can only come this far?
Who showed the moon where to hide 'til evening
Whose words alone can catch a falling star?
Well I know my Redeemer lives
I know my Redeemer lives
All of creation testify
This life within me cries
I know my Redeemer lives
The very same God that spins things in orbit
He runs to the weary, the worn and the weak
And the same gentle hands that hold me when I'm broken
They conquered death to bring me victory
Now I know my Redeemer lives
I know my Redemer lives
Let all creation testify
This life within me cries
I know my Redeemer lives
Wednesday, February 25, 2009
Sunday, February 22, 2009
Sunday, Feb 22, 2009
Well, I just re-read my last post and I am still just as tired (or more so). The breathing was bad Thursday night. I was laying there at 12:30 still feeling like my breathing was off, so I got my stethoscope out and while I thought I heard an abnormality in the left lower lobe of my left lung, I don't think it was anything. I finally fell asleep around 1 am and awoke at 4 to potty. My dog came barging into the bathroom, scaring me and then it was hard to fall asleep. My breathing was bad, I started to worry, got some nice adrenaline rushes and finally just got up and sat on the couch. James came out a few minutes later and asked if I was OK.
I said yes and he went to the bathroom. A couple minutes passed and I heard two loud 'thumps'. I raced into the bathroom (as best I could) to find my husband unconscious in the bathtub, his legs hanging over the side. He awoke as I talked to him. I got some sugar into him immediately (since diabetics can pass out due to low blood sugar), and checked his sugar. His sugar was high, not low. And not high enough to cause anything.
He went to bed and finally agreed to go to the ER after he kept feeling faint. So we spent the better part of Friday in the ER. Of course I had slept 4 hours and I was feeling tired, but nervous for him. I think today I'm feeling the effects.
I have a slight fever today, my neck is stiff and painful, I'm dizzy, feel very foggy, I have a productive cough and my throat is a little sore.
I received my lab tests since we were at the same hosptial that I had them drawn. Most of them were within normal limits. Even my Lymphocytes and Monocytes that had previously been low were normal. My CH50 is low and the C4 is on the low side (16.1). Which online says can mean Autoimmune like Lupus.
I am very interested to see what my new LLMD thinks. I wish my appointment was sooner, I am counting down each day. 18 days left. I am thrilled that this man may be able to help me get well.
I ate sugar last night (we had family night with our kids), had chocolate, sesame treat things and some Panda licorice (which for the record isn't processed sugar, but does have molasses).
I just feel like I am drunk today or something and I don't drink alcohol. I think it's the candida. So I'm doing mostly raw. I know I need to and James needs to make sure he's eating live food too.
I want him to be tested for Lyme. He's got the brain fog down pat. His body temperature was 96.7 at 11 am.
I was hoping that he wouldn't get it. I'm sure the kids all have it, even if 2 aren't really that symptomatic.
Well...I'd better go lay down again, this dizziness is just no fun esp when I have SO much laundry to do (but I did get the house cleaned a few days ago).
I said yes and he went to the bathroom. A couple minutes passed and I heard two loud 'thumps'. I raced into the bathroom (as best I could) to find my husband unconscious in the bathtub, his legs hanging over the side. He awoke as I talked to him. I got some sugar into him immediately (since diabetics can pass out due to low blood sugar), and checked his sugar. His sugar was high, not low. And not high enough to cause anything.
He went to bed and finally agreed to go to the ER after he kept feeling faint. So we spent the better part of Friday in the ER. Of course I had slept 4 hours and I was feeling tired, but nervous for him. I think today I'm feeling the effects.
I have a slight fever today, my neck is stiff and painful, I'm dizzy, feel very foggy, I have a productive cough and my throat is a little sore.
I received my lab tests since we were at the same hosptial that I had them drawn. Most of them were within normal limits. Even my Lymphocytes and Monocytes that had previously been low were normal. My CH50 is low and the C4 is on the low side (16.1). Which online says can mean Autoimmune like Lupus.
I am very interested to see what my new LLMD thinks. I wish my appointment was sooner, I am counting down each day. 18 days left. I am thrilled that this man may be able to help me get well.
I ate sugar last night (we had family night with our kids), had chocolate, sesame treat things and some Panda licorice (which for the record isn't processed sugar, but does have molasses).
I just feel like I am drunk today or something and I don't drink alcohol. I think it's the candida. So I'm doing mostly raw. I know I need to and James needs to make sure he's eating live food too.
I want him to be tested for Lyme. He's got the brain fog down pat. His body temperature was 96.7 at 11 am.
I was hoping that he wouldn't get it. I'm sure the kids all have it, even if 2 aren't really that symptomatic.
Well...I'd better go lay down again, this dizziness is just no fun esp when I have SO much laundry to do (but I did get the house cleaned a few days ago).
Thursday, February 19, 2009
Thursday Feb 19, 2009
I am tired today. I was so tired last night and ready to sleep. I went to bed around 11 and woke up at 1 am completely drenched in my own sweat. I stripped completely and moved to an unsoaked part of the bed and fell asleep. At 5-6 am, again I woke up soaked. Moved to another spot in the bed and fell asleep again. I awoke at 8:45 am to Noah barking outside.
I jumped up as I thought James had forgotten to take our son to school (well that he overslept or something). Nope, they had a 2 hour delay due to the snow.
I feel like I keep forgetting to breathe today. Like every so often, my lungs will expand and take in a big breath of air. It may be air hunger (a symptom of Babesia). My neck was also sore and stiff this morning.
I would really like to just lay in bed and watch movies all day, but cannot with the kiddos. I really need to clean my house and finish the laundry.
ugh.. this getting well business was so much easier when I was 18 because my mom did the household stuff and I had no kids to care for. Getting well is a bigger incentive now though because of my babies.
I've also had this symptom for a few months occassionally of walking and feeling like the floor is moving under me. It's very bizarre. I hope to ask my new LLMD about that next month. I wish my appointment was sooner. Maybe I will call the office and make sure they know I am ready and willing to see him sooner if possible!
Supposedly my bloodwork may be ready tomorrow from the hospital. I plan to call to see if it's all in or not. If it is, then that is fantastic. I'm very eager to see how it is, how it's changed since my Oct bloodwork in the ER and to see the Rheumatoid factor and inflammatory responses. I've never had those taken/measured.
Some days like today when I feel so crappy, I wonder if I will make it until March 12. I know that I have felt this bad or worse over the years, but it still stinks and makes me worry.
Well, I really need to try to do something. The dizziness makes it so hard. I need to keep drinking water too, I often forget and since I lost a lot of fluid last night, my urine was very dark and sparse this morning.
I jumped up as I thought James had forgotten to take our son to school (well that he overslept or something). Nope, they had a 2 hour delay due to the snow.
I feel like I keep forgetting to breathe today. Like every so often, my lungs will expand and take in a big breath of air. It may be air hunger (a symptom of Babesia). My neck was also sore and stiff this morning.
I would really like to just lay in bed and watch movies all day, but cannot with the kiddos. I really need to clean my house and finish the laundry.
ugh.. this getting well business was so much easier when I was 18 because my mom did the household stuff and I had no kids to care for. Getting well is a bigger incentive now though because of my babies.
I've also had this symptom for a few months occassionally of walking and feeling like the floor is moving under me. It's very bizarre. I hope to ask my new LLMD about that next month. I wish my appointment was sooner. Maybe I will call the office and make sure they know I am ready and willing to see him sooner if possible!
Supposedly my bloodwork may be ready tomorrow from the hospital. I plan to call to see if it's all in or not. If it is, then that is fantastic. I'm very eager to see how it is, how it's changed since my Oct bloodwork in the ER and to see the Rheumatoid factor and inflammatory responses. I've never had those taken/measured.
Some days like today when I feel so crappy, I wonder if I will make it until March 12. I know that I have felt this bad or worse over the years, but it still stinks and makes me worry.
Well, I really need to try to do something. The dizziness makes it so hard. I need to keep drinking water too, I often forget and since I lost a lot of fluid last night, my urine was very dark and sparse this morning.
Tuesday, February 17, 2009
Tuesday, Feb 17. 2009
Well it's hard to believe that there are only 11 days left in Feb! I'm glad because it means March is nearing and better weather should be upon us as well as my first appointment with Dr. J.
On Valentine's Day, James and I went to the local hospital and had my pre-appointment bloodwork drawn. Only 7 vials of blood were taken, with the order sheet I was afraid I was going to be donating a large amount of blood! I'm glad I will be tested for EBV, I was told in 2002 that I did not have it, therefore I never had mono. But who knows?!! I've been told many conflicting things from a variety of doctors.
I watched part of Dr. Phil today (I never watch it, but heard them speaking about fear, so I started watching) and I think I want to start counseling. Something REALLY awful happened to me and my family in Oct 2007 and I have not gotten past it, partially because I do not know how this will affect my future.
I do believe I have PTSD. I have not driven by myself since July 2008, and I am sometimes very fearful in public places. I just don't know how having this terror will affect my LD treatment. It's quite obvious to me that this awful thing crashed my immune system and allowed me to relapse for the third time.
So can I heal without addressing this issue? I doubt it. But I am petrified of talking about it. I can only imagine how fearful it will be to talk with another person about this. Plus I feel guilty because James and the kids will have to take me to the appointment.
I just don't know. I did call one counseling place and asked if they have any experience with Lyme Disease induced anxiety and depression. I was not surprised that they do not. However, I do believe that there are many people in OH who do have Lyme with A and D and don't know they are sick. So they probably have seen people like myself.
I need to get over my fear of taking medications. I had a reaction (whether fear based or allergic, I'm not sure) to something called Seroctin I bought online last summer. I took the liquid and within minutes, my heart made a huge BOOM! And it just took off. It was beating harder than I'd ever experienced it, I placed James' hand on my chest and his worried expression let me know that this was bad.
It took about 15 minutes for the rate to slow enough that I could start to breathe normally. I never took it again and have not experienced it since. James took the supplement twice without ill effects. It's hard to say what caused it.
As a result, I am very fearful that I will either have an anaphylactic reaction to a medicine or one with tachycardia/hypertension again that will kill me.
So I struggle with wondering if I should just remain in my current state and hope that the Lyme dosen't kill me or take meds that may kill me.
What a rotten choice!
Sometimes I wish I could return at least to Sept 2007 and ensure that this trauma would not occur. What would my life be like? Vastly different without the recurrance of Lyme I'm sure! My children are missing out without me. I know this. It kills me. I often wish that I had never made that trip to South Carolina in 1996. What I thought would be a wonderful time turned out to be the most devestating lifealtering occurance in my life.
I wish people without Lyme had the capacity to understand the magnitude that lyme changes a person. I can hardy rememver who I used to be. My mother remembers. She has stated several times that it just seemed that something came and took her daughter one day. Physically I am still here. Yes. Part of me anyways. I can walk and clean and cook, somedays are more of a a struggle than others.
Yesterday I was trying to help James with the basement walls. He wanted to remove the paneling and drywall after our water pipes broke and the basement flooded in January. Well, we removed the walls last week, but they were both nailed AND glued and there is MUCH glue to scrape off. It's very difficult to scrape. I could scrape about 10 inches worth and I would have to sit down. Then repeat.
I know he gets frustrated, but I did warn him that I may not be of much help.
Such is my life.
Sorry I am not full of hope today about my healing. It just feels imppossible sometimes.
Anyway.....I will end this post now.
On Valentine's Day, James and I went to the local hospital and had my pre-appointment bloodwork drawn. Only 7 vials of blood were taken, with the order sheet I was afraid I was going to be donating a large amount of blood! I'm glad I will be tested for EBV, I was told in 2002 that I did not have it, therefore I never had mono. But who knows?!! I've been told many conflicting things from a variety of doctors.
I watched part of Dr. Phil today (I never watch it, but heard them speaking about fear, so I started watching) and I think I want to start counseling. Something REALLY awful happened to me and my family in Oct 2007 and I have not gotten past it, partially because I do not know how this will affect my future.
I do believe I have PTSD. I have not driven by myself since July 2008, and I am sometimes very fearful in public places. I just don't know how having this terror will affect my LD treatment. It's quite obvious to me that this awful thing crashed my immune system and allowed me to relapse for the third time.
So can I heal without addressing this issue? I doubt it. But I am petrified of talking about it. I can only imagine how fearful it will be to talk with another person about this. Plus I feel guilty because James and the kids will have to take me to the appointment.
I just don't know. I did call one counseling place and asked if they have any experience with Lyme Disease induced anxiety and depression. I was not surprised that they do not. However, I do believe that there are many people in OH who do have Lyme with A and D and don't know they are sick. So they probably have seen people like myself.
I need to get over my fear of taking medications. I had a reaction (whether fear based or allergic, I'm not sure) to something called Seroctin I bought online last summer. I took the liquid and within minutes, my heart made a huge BOOM! And it just took off. It was beating harder than I'd ever experienced it, I placed James' hand on my chest and his worried expression let me know that this was bad.
It took about 15 minutes for the rate to slow enough that I could start to breathe normally. I never took it again and have not experienced it since. James took the supplement twice without ill effects. It's hard to say what caused it.
As a result, I am very fearful that I will either have an anaphylactic reaction to a medicine or one with tachycardia/hypertension again that will kill me.
So I struggle with wondering if I should just remain in my current state and hope that the Lyme dosen't kill me or take meds that may kill me.
What a rotten choice!
Sometimes I wish I could return at least to Sept 2007 and ensure that this trauma would not occur. What would my life be like? Vastly different without the recurrance of Lyme I'm sure! My children are missing out without me. I know this. It kills me. I often wish that I had never made that trip to South Carolina in 1996. What I thought would be a wonderful time turned out to be the most devestating lifealtering occurance in my life.
I wish people without Lyme had the capacity to understand the magnitude that lyme changes a person. I can hardy rememver who I used to be. My mother remembers. She has stated several times that it just seemed that something came and took her daughter one day. Physically I am still here. Yes. Part of me anyways. I can walk and clean and cook, somedays are more of a a struggle than others.
Yesterday I was trying to help James with the basement walls. He wanted to remove the paneling and drywall after our water pipes broke and the basement flooded in January. Well, we removed the walls last week, but they were both nailed AND glued and there is MUCH glue to scrape off. It's very difficult to scrape. I could scrape about 10 inches worth and I would have to sit down. Then repeat.
I know he gets frustrated, but I did warn him that I may not be of much help.
Such is my life.
Sorry I am not full of hope today about my healing. It just feels imppossible sometimes.
Anyway.....I will end this post now.
Wednesday, February 11, 2009
Wed, Feb 11, 2009
Well, today was a strange day. I was awake at 6 am with a terrible nightmare, it was difficult to fall asleep after that. I awoke again at 9 am. I was exhausted and did not think I would make it until bedtime.
I came downstairs and watched the last part of Seventh Heaven on TV. Got the girls breakfast and cleaned up the spilled oatmeal on the floor/table.
Noah (our dog) has been driving us crazy lately. I know he needs walked more. I've just been so tired and James just doesn't like him and won't walk him....sigh....
If I need to go do laundry I either have to tie him up or ask James to watch him. He constantly gets things he knows he isn't supposed to have and chews them. Like today, our brand new rug pad that we haven't even used yet. I was in with Madison (she was on the naughty chair for stratching her brother), and I went out to check on Noah who was in the hallway. I opened the door and he jumped up and ran to the other side of the hallway with tape in his mouth (from the rug pad).
I felt pretty good anxiety wise today which was a blessing. Just felt tired and a little depressed, two Chronic Lymies committed suicide this past week I just found out. I feel awful for them and pray that I don't get to that state of mind again, it is worse than any imaginable amount of pain.
I wonder if I will truly be well again. James and the kids will not even know me. It's exciting to ponder the possibilities, but sobering to realize it may never happen. I can still remember (somewhat) how I felt before my senior year in high school when I got so sick. This disease makes me so angry to have taken so much of my life. So many good years. Sometimes I wish it could have happened to me later in life, my 40's or 50's so I could have enjoyed my youth.
Last week I had a good day. I still had a little anxiety, but I felt pretty darn good. It felt like such a gift. And I realized that to the rest of the world, this is every single day. I remember in CA when my symptoms were for the most part non-existant in 2005-2006 and on those days when I just didn't want to go to work, I smiled knowing that a year before I would have taken that anyday.
I functioned working as a Neonatal Intensive Care nurse in a level 3 NICU with critical neonates, and I loved it. Now? Now I would not be able to stand and do assessments or remember how to calculate meds correctly.
That makes me sad. Right now were are remodeling our basement after it flooded in January, and it's all I can do to try and keep the house clean and try to do a little to help with the basement. It needs to be done before I start treatment as I may get very ill and will not be able to function at all.
How do you feel when you start taking medication to kill the bacteria that's been allowed to party in your body for 12.5 years? How bad can the herxheimer reaction get?
THAT is what frightens me. I know the local hospital has no experience with Lyme Disease. I went there in Oct with a panic attack (it had been lasting for 4 hours and even after being in the ER, didn't let up for several more hours). I told the Triage Nurse that I had been diagnosed with Lyme 2 weeks before. She looked at me wide-eyed and asked, "Where did you get THAT?"
Doesn't matter that PA has the highest number of new cases of Lyme and it is right next to OH! Doctors here don't know the s/s of Lyme, so everyone is diagnosed with MS, Lupus, FibroM, Chronic Fatigue Syndrome, ect. How many of these people are suffering with Lyme and hiding behind a misdiagnosis?? I was one of them for years.
Well, I should start watching Noah better, he's tried to eat a picture frame he saw on the table and went upstairs to eat the rugpad, chewed a sock, ect. Just in the last 5 minutes.
Good Night.
I came downstairs and watched the last part of Seventh Heaven on TV. Got the girls breakfast and cleaned up the spilled oatmeal on the floor/table.
Noah (our dog) has been driving us crazy lately. I know he needs walked more. I've just been so tired and James just doesn't like him and won't walk him....sigh....
If I need to go do laundry I either have to tie him up or ask James to watch him. He constantly gets things he knows he isn't supposed to have and chews them. Like today, our brand new rug pad that we haven't even used yet. I was in with Madison (she was on the naughty chair for stratching her brother), and I went out to check on Noah who was in the hallway. I opened the door and he jumped up and ran to the other side of the hallway with tape in his mouth (from the rug pad).
I felt pretty good anxiety wise today which was a blessing. Just felt tired and a little depressed, two Chronic Lymies committed suicide this past week I just found out. I feel awful for them and pray that I don't get to that state of mind again, it is worse than any imaginable amount of pain.
I wonder if I will truly be well again. James and the kids will not even know me. It's exciting to ponder the possibilities, but sobering to realize it may never happen. I can still remember (somewhat) how I felt before my senior year in high school when I got so sick. This disease makes me so angry to have taken so much of my life. So many good years. Sometimes I wish it could have happened to me later in life, my 40's or 50's so I could have enjoyed my youth.
Last week I had a good day. I still had a little anxiety, but I felt pretty darn good. It felt like such a gift. And I realized that to the rest of the world, this is every single day. I remember in CA when my symptoms were for the most part non-existant in 2005-2006 and on those days when I just didn't want to go to work, I smiled knowing that a year before I would have taken that anyday.
I functioned working as a Neonatal Intensive Care nurse in a level 3 NICU with critical neonates, and I loved it. Now? Now I would not be able to stand and do assessments or remember how to calculate meds correctly.
That makes me sad. Right now were are remodeling our basement after it flooded in January, and it's all I can do to try and keep the house clean and try to do a little to help with the basement. It needs to be done before I start treatment as I may get very ill and will not be able to function at all.
How do you feel when you start taking medication to kill the bacteria that's been allowed to party in your body for 12.5 years? How bad can the herxheimer reaction get?
THAT is what frightens me. I know the local hospital has no experience with Lyme Disease. I went there in Oct with a panic attack (it had been lasting for 4 hours and even after being in the ER, didn't let up for several more hours). I told the Triage Nurse that I had been diagnosed with Lyme 2 weeks before. She looked at me wide-eyed and asked, "Where did you get THAT?"
Doesn't matter that PA has the highest number of new cases of Lyme and it is right next to OH! Doctors here don't know the s/s of Lyme, so everyone is diagnosed with MS, Lupus, FibroM, Chronic Fatigue Syndrome, ect. How many of these people are suffering with Lyme and hiding behind a misdiagnosis?? I was one of them for years.
Well, I should start watching Noah better, he's tried to eat a picture frame he saw on the table and went upstairs to eat the rugpad, chewed a sock, ect. Just in the last 5 minutes.
Good Night.
Tuesday, February 10, 2009
Tuesday, Feb 10, 2009
Well it's still morning, but I've been sneezing a lot today, maybe from helping James rip out paneling 2 nights ago. I'm feeling discouraged today, wondering if this will EVER end. I added some friends to my facebook page last night and (they didn't know I have Lyme) they asked what I was up to, ect.
Sometimes I feel like I've never gotten to have a real life. It's been clouded by this illness. I had so many dreams back in high school. I was so smart and ready for life. Now sometimes like when I'm in the shower I will look at both the shower gel and the shampoo and try to think really hard to remember which one I use on my body and which on my hair. I get really confused sometimes.
I apparently will say something to James and he will give me a 'huh?' I will say it again and he will say, "No, that's not what you said before, you didn't make any sense." I will swear that I said the same thing both times though, it seems like I did.
I looked at pictures of my old friends on facebook enjoying their kids/life. My kids have never had a 'normal, healthy mom'. Back in the day before I knew it was Lyme, I just kept reiterating what the doc said, "panic disorder". It's all in my head. I would get so frustrated that I couldn't overcome it.
Thing is, when I went on a raw diet, it took about 6 months, but the panic/fatigue stopped. Now if it was panic disorder, why in the world did it go away without counseling?? But just diet??! My theory is that the diet enabled me to detox the neuro toxins from the Lyme while strengthening my immune system and knocked the spirochetes into cyst form (dormancy). Then when I got pregant 6 months later, I started eating junk food and my body was working really hard to make te baby and immune function crashed.
When Violet was just 1-2 months old, I started getting the heart symptoms again. Plus after she was born, I had night sweats for about 8 weeks following her birth. I had not had that with the other 2 kids. My mom assured me it was 'just hormones'.
2 weeks ago I had a few heart episodes, I was also having sheet soaking night sweats for 5-7 nights in a row. I haven't had another heart episode since, nor the night sweats. Babesia flaring it's ugly head?
I cannot wait to see Dr. J next month in PA. I know that someone told me that he doesn't buy into the idea that everyone has a co-infection, but I'm hopeful that he will consider Babs for me, esp since it came up on Electrodermal testing before I ever knew I had Lyme.
Well, I need to get moving, crazy James wants me (haha) to rip out all of the paneling in his office basement, and we need to take it to the landfill later today, swing by Lowes. I've promised Elijah that we can go to the library after his Good News program after school. He really wants to get some Junie B Jones books, his teacher reads them at school to the students.
I may write more later if I get a chance!
Sometimes I feel like I've never gotten to have a real life. It's been clouded by this illness. I had so many dreams back in high school. I was so smart and ready for life. Now sometimes like when I'm in the shower I will look at both the shower gel and the shampoo and try to think really hard to remember which one I use on my body and which on my hair. I get really confused sometimes.
I apparently will say something to James and he will give me a 'huh?' I will say it again and he will say, "No, that's not what you said before, you didn't make any sense." I will swear that I said the same thing both times though, it seems like I did.
I looked at pictures of my old friends on facebook enjoying their kids/life. My kids have never had a 'normal, healthy mom'. Back in the day before I knew it was Lyme, I just kept reiterating what the doc said, "panic disorder". It's all in my head. I would get so frustrated that I couldn't overcome it.
Thing is, when I went on a raw diet, it took about 6 months, but the panic/fatigue stopped. Now if it was panic disorder, why in the world did it go away without counseling?? But just diet??! My theory is that the diet enabled me to detox the neuro toxins from the Lyme while strengthening my immune system and knocked the spirochetes into cyst form (dormancy). Then when I got pregant 6 months later, I started eating junk food and my body was working really hard to make te baby and immune function crashed.
When Violet was just 1-2 months old, I started getting the heart symptoms again. Plus after she was born, I had night sweats for about 8 weeks following her birth. I had not had that with the other 2 kids. My mom assured me it was 'just hormones'.
2 weeks ago I had a few heart episodes, I was also having sheet soaking night sweats for 5-7 nights in a row. I haven't had another heart episode since, nor the night sweats. Babesia flaring it's ugly head?
I cannot wait to see Dr. J next month in PA. I know that someone told me that he doesn't buy into the idea that everyone has a co-infection, but I'm hopeful that he will consider Babs for me, esp since it came up on Electrodermal testing before I ever knew I had Lyme.
Well, I need to get moving, crazy James wants me (haha) to rip out all of the paneling in his office basement, and we need to take it to the landfill later today, swing by Lowes. I've promised Elijah that we can go to the library after his Good News program after school. He really wants to get some Junie B Jones books, his teacher reads them at school to the students.
I may write more later if I get a chance!
Sunday, February 8, 2009
Bible Verses and Lyme
I wanted to start a post with bible verses that pertain to Lyme disease.
This verse stuck out this morning, because I often feel so alone and afraid, but the battle is truly not mine!
He said: "Listen, King Jehoshaphat and all who live in Judah and Jerusalem! This is what the LORD says to you: 'Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God's. ... You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the LORD will give you, O Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the LORD will be with you.'"
2 Chronicles 20:15,17
This verse stuck out this morning, because I often feel so alone and afraid, but the battle is truly not mine!
He said: "Listen, King Jehoshaphat and all who live in Judah and Jerusalem! This is what the LORD says to you: 'Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God's. ... You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the LORD will give you, O Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the LORD will be with you.'"
2 Chronicles 20:15,17
Saturday, February 7, 2009
Saturday, Feb 7, 2009
Well, today was kind of a yucky day. I was really tired and we had to go to our niece's birthday party. It was good to go, and I was able to sit most of the 3 hours, so that was nice. I just feel so foggy today, like I'm drunk or something? It's 9:35 pm and I am so ready for bed!
I have an appointment with my new LLMD on March 12 and I am so excited. Now we are trying to figure out how much our health insurance will pay for my lab tests. This new doctor wants me to have them all completed a few weeks before the appointment, and our insurance doesn't switch until March. Ugh!!
Whichever insurance we do end up having, we'll have to pay some out of pocket regardless...so....
I really hope that these antibiotics will give me my life back. I'm tired of feeling so disconnected from everything and everyone (including myself).
It takes a toll over the years. Funny how when I first started feeling this way, it was just unbearible. This was 12 years ago and had I known 12 years later, nothing would have changed, well I would have gone insane for sure!
I think having 3 wonderful kids makes me keep going. I want to be a good mom for them, and I can't when I am sick.
I just pray that my new doctor in Pennsylvania is the answer to my prayers!!!
I need to put the kids to bed, we have church in the morning (I haven't gone in 3 weeks, hope I'm feeling better tomorrow!).
Good night.
I have an appointment with my new LLMD on March 12 and I am so excited. Now we are trying to figure out how much our health insurance will pay for my lab tests. This new doctor wants me to have them all completed a few weeks before the appointment, and our insurance doesn't switch until March. Ugh!!
Whichever insurance we do end up having, we'll have to pay some out of pocket regardless...so....
I really hope that these antibiotics will give me my life back. I'm tired of feeling so disconnected from everything and everyone (including myself).
It takes a toll over the years. Funny how when I first started feeling this way, it was just unbearible. This was 12 years ago and had I known 12 years later, nothing would have changed, well I would have gone insane for sure!
I think having 3 wonderful kids makes me keep going. I want to be a good mom for them, and I can't when I am sick.
I just pray that my new doctor in Pennsylvania is the answer to my prayers!!!
I need to put the kids to bed, we have church in the morning (I haven't gone in 3 weeks, hope I'm feeling better tomorrow!).
Good night.
Thursday, February 5, 2009
Feb 5, 2009
So today my main symptoms are some major fatigue, pretty heavy brain fog, minor muscle twitching, and some worried thoughts. I felt pretty good yesterday, so in comparison, today is a crappy day, but nothing compared to last fall. I ate OK today, had a few apples, oatmeal with pure maple syrup, some pretzels, egg salad sandwich (on whole wheat bread) and a vanilla yogurt. I've managed to gain 8 lbs this past month, wahoo! I was wearing pretty thin, so this a good thing, my face looks so much better now!
There are some organic cookies calling my name in the cupboard behind me and so far I've resisted, but...they are tempting. I'll try and eat another apple instead!
I'm going to try and get to bed earlier tonight and get better sleep (no more nightmares please!), and see how I feel in the morning.
Good night!
There are some organic cookies calling my name in the cupboard behind me and so far I've resisted, but...they are tempting. I'll try and eat another apple instead!
I'm going to try and get to bed earlier tonight and get better sleep (no more nightmares please!), and see how I feel in the morning.
Good night!
Welcome to my Blog!
Wow, I can't believe I have my own blog! James has been asking me to make one as he knows how much I adore reading online!
I wanted to have a blog that chronicles my battle with Lyme Disease. I have had Lyme Disease since July 1996, but just recently found out on October 20, 2008 that this 'thing' is Lyme Disease.
I hope that you learn with me about this devestating illness as I hopefully conquer it for good this time!
I wanted to have a blog that chronicles my battle with Lyme Disease. I have had Lyme Disease since July 1996, but just recently found out on October 20, 2008 that this 'thing' is Lyme Disease.
I hope that you learn with me about this devestating illness as I hopefully conquer it for good this time!
My Lyme Story
Like so many Lyme sufferers, I have a story to tell. How this 'thing' called Lyme disease raped me of the life that I once knew. Turned my whole world upside down in a few short months.
For me I was 17 years old with the whole world ahead of me. I had a lot of friends, was a gymnast, cross country runner, competed in track. I led a very active life. Until Lyme ran over me like a freight train.
Soon I was having difficulty swallowing, I started getting panic attacks. My body was too exhausted to stand at times. A friend's mother died tragically during that time and I remember being at the funeral and having to sit in one of the only chairs available. There were people decades older than me whom I'm sure were wondering why this young person was taking one of the only available seats.
I had been told it was 'mono'. So I waited for it to pass. Soon, my thoughts turned dark. Of death. Constantly, I could not shake it from my head. I would speak with a classmate only to inadvertanly invision them in their casket. It frightened me to no end.
I began believing that this 'must' be a spiritual issue. I tried to go to church as often as I could. I wondered what I had 'done' that was so wrong that I was now cursed.
The last 18 weeks of high school were almost unbearable. I cried often. I missed 18 days of school, really 36 half days. I would go to school in the morning when most of my classes were and then leave before lunch. Especially at night, it felt like I couldn't get enough air into my lungs, my mom slept with me for weeks as I was sure I would not wake up. Back to the doctor I went.
This time I was told it was anxiety. I would just need to learn to overcome it. The depression got worse by the day. I felt so strange in my body. Light hurt my eyes. I didn't understand what was happening to me or how to stop it. I just wanted to be me again.
I graduated and started working a summer job in a factory. After work I would go to sleep and sometimes not wake up until it was time to work again. The fast heart rate happened before work at times and my mom would drive behind me and sit in the parking lot to make sure I would be OK.
The first year of this, I had a constant low grade fever. My friends talked me into giving blood at the blood mobile at school and I was too sick to argue. Then I was denied, I had a fever and would not be permitted. Thank the Lord I had a fever. A person with Lyme Disease should never donate blood or organs as it can infect the person receiving the donation.
The second year, my body temperature was 96. I went to another doctor four months after graduating. He tested me for Hepatitis, thyroid, and Lyme Disease. All was negative except for my thyroid which was "a little low, but not low enough to really do much" according to the Physician. I had just turned 19 years old.
The new doctor gave me a diagnosis of Chronic Fatigue Syndrome and some vials of clear fluid and syringes. I was to inject myself twice per day and hope for the best. I did not improve. The last time I saw him, he said I would be like this forever as he couldn't help me. I went home and cried.
A few months later, I went to another doctor, this time a Chiropractor. He used something called electrodermal testing and told me that my Pituitary, Hypothalamus and Thyroid were not functioning properly. I took some of his treatments without much success.
I then heard about and started the Hallelujah Diet. I became a vegetarian overnight and purchased a juicer and started juicing carrots. In a few months I was well enough to go away to college. I still felt 'weird', but my energy and many of my symptoms had improved tremendously!
I got straight A's the first semester and all A's and 2 B's the second.
I continued to get stronger and then a few years later, relapsed again. This time I thought I just had anxiety, because the fatigue wasn't quite as bad as before. Plus I read about anxiety symptoms online and many had difficulty swallowing, fatigue, weight loss, muscle twitches, ect. after 2 years of feeling like this, I went back to the Hallelujah diet thinking that maybe even though I wasn't 'sick this time' that it could help with the anxiety.
It did. I started working as a Registered Nurse for the first time in a Neonatal Intensive Care Unit. It was an AMAZING experience. I loved it! Then I became pregnant and we moved back to Ohio.
Shortly after our third child was born I began having episodes of tachycardia (racing heart). I tried to chalk it up to anxiety, problem is, it wasn't anxiety.
I just lived with it, until a year later, the most traumatic thing happened to me in my life and my health just started failing. Just days before I became traumatized, an alternative doctor whom my husband and I went to see for a physical for foster parenting told me I had Lyme Disease and Babesia.
I believed it immediately due to all of the health problems I'd had in my life. Then this horrible thing happened to me, and I just threw the diagnosis under the rug, especially since the diagnosis had been with the electrodermal testing. However, my husband did not test postive with this machine and I had not gone to him expecting him to find anything. This doctor seemed pretty surprised himself with the findings!
Finally a year later I had a blood test and saw one of the best LLMD's in the country. He told me that based on my test results, he believed I had Lyme Disease.
The twelve year battle had a name. Lyme Disease. This bacteria had somehow had the capacity to ruin my life to a tremendous extent. It disgusts me and fascinates me both.
For me I was 17 years old with the whole world ahead of me. I had a lot of friends, was a gymnast, cross country runner, competed in track. I led a very active life. Until Lyme ran over me like a freight train.
Soon I was having difficulty swallowing, I started getting panic attacks. My body was too exhausted to stand at times. A friend's mother died tragically during that time and I remember being at the funeral and having to sit in one of the only chairs available. There were people decades older than me whom I'm sure were wondering why this young person was taking one of the only available seats.
I had been told it was 'mono'. So I waited for it to pass. Soon, my thoughts turned dark. Of death. Constantly, I could not shake it from my head. I would speak with a classmate only to inadvertanly invision them in their casket. It frightened me to no end.
I began believing that this 'must' be a spiritual issue. I tried to go to church as often as I could. I wondered what I had 'done' that was so wrong that I was now cursed.
The last 18 weeks of high school were almost unbearable. I cried often. I missed 18 days of school, really 36 half days. I would go to school in the morning when most of my classes were and then leave before lunch. Especially at night, it felt like I couldn't get enough air into my lungs, my mom slept with me for weeks as I was sure I would not wake up. Back to the doctor I went.
This time I was told it was anxiety. I would just need to learn to overcome it. The depression got worse by the day. I felt so strange in my body. Light hurt my eyes. I didn't understand what was happening to me or how to stop it. I just wanted to be me again.
I graduated and started working a summer job in a factory. After work I would go to sleep and sometimes not wake up until it was time to work again. The fast heart rate happened before work at times and my mom would drive behind me and sit in the parking lot to make sure I would be OK.
The first year of this, I had a constant low grade fever. My friends talked me into giving blood at the blood mobile at school and I was too sick to argue. Then I was denied, I had a fever and would not be permitted. Thank the Lord I had a fever. A person with Lyme Disease should never donate blood or organs as it can infect the person receiving the donation.
The second year, my body temperature was 96. I went to another doctor four months after graduating. He tested me for Hepatitis, thyroid, and Lyme Disease. All was negative except for my thyroid which was "a little low, but not low enough to really do much" according to the Physician. I had just turned 19 years old.
The new doctor gave me a diagnosis of Chronic Fatigue Syndrome and some vials of clear fluid and syringes. I was to inject myself twice per day and hope for the best. I did not improve. The last time I saw him, he said I would be like this forever as he couldn't help me. I went home and cried.
A few months later, I went to another doctor, this time a Chiropractor. He used something called electrodermal testing and told me that my Pituitary, Hypothalamus and Thyroid were not functioning properly. I took some of his treatments without much success.
I then heard about and started the Hallelujah Diet. I became a vegetarian overnight and purchased a juicer and started juicing carrots. In a few months I was well enough to go away to college. I still felt 'weird', but my energy and many of my symptoms had improved tremendously!
I got straight A's the first semester and all A's and 2 B's the second.
I continued to get stronger and then a few years later, relapsed again. This time I thought I just had anxiety, because the fatigue wasn't quite as bad as before. Plus I read about anxiety symptoms online and many had difficulty swallowing, fatigue, weight loss, muscle twitches, ect. after 2 years of feeling like this, I went back to the Hallelujah diet thinking that maybe even though I wasn't 'sick this time' that it could help with the anxiety.
It did. I started working as a Registered Nurse for the first time in a Neonatal Intensive Care Unit. It was an AMAZING experience. I loved it! Then I became pregnant and we moved back to Ohio.
Shortly after our third child was born I began having episodes of tachycardia (racing heart). I tried to chalk it up to anxiety, problem is, it wasn't anxiety.
I just lived with it, until a year later, the most traumatic thing happened to me in my life and my health just started failing. Just days before I became traumatized, an alternative doctor whom my husband and I went to see for a physical for foster parenting told me I had Lyme Disease and Babesia.
I believed it immediately due to all of the health problems I'd had in my life. Then this horrible thing happened to me, and I just threw the diagnosis under the rug, especially since the diagnosis had been with the electrodermal testing. However, my husband did not test postive with this machine and I had not gone to him expecting him to find anything. This doctor seemed pretty surprised himself with the findings!
Finally a year later I had a blood test and saw one of the best LLMD's in the country. He told me that based on my test results, he believed I had Lyme Disease.
The twelve year battle had a name. Lyme Disease. This bacteria had somehow had the capacity to ruin my life to a tremendous extent. It disgusts me and fascinates me both.
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