Wednesday, April 17, 2013
Just a crumb
Do you ever feel like you are stuck in a vast deserted place void of landmarks looking for a breadcrumb from heaven that urges you to 'go this way?'
Monday, April 8, 2013
Oregon bound? I think.
Looks like I'll be heading back to Oregon for a couple weeks during the first part of May, Lord willing. Then, I may go back to Oregon every 6 weeks or so for 1-2 week treatments, as the Lord allows. After a lot of prayer and thought, this is what Jim and I feel led to try to do. With my illnesses, there isn't a quick fix and this is a longer term approach to gaining and maintaining wellness. We only have the first trip planned at this time with my doctor. We will buy airline tickets for it today. Please pray that we will be clearly led the way in which we should go, one step at a time. This is what we want even more than simply me being well.
I have to tell you all, God has been good in providing helps in all forms when we need them. I can't praise God enough for the amazing ways in which He is evident in our lives through this. One huge bonus of being so sick is there is no doubt about a real and living Savior. His presence is undeniable when things suddenly just simply unfold before us out of complete confusion at times. We have this first trip mostly hammered out, but not the next. We are learning to take things one at a time, in faith, as we never did before.
This may be no big revelation to you, and if that is the case, I am very glad, but I have learned something I would like to share. As a person who used to plan things way in advance and stick tight to my plans, it is a big deal for me to learn to give my "planning" up for "whatever-comes-next" instead. Even at the risk of appearing flaky, unreliable, lazy and all of those other undesirables that type-A personalities loathe, I do not plan like I once did. Regrettably, I gave up my planning problem only by force, so I cannot toot my own horn here. (Note: more force required to change more stubborn people.) Currently, I am often unable to even plan to cook supper a few hours later, so I rarely make plans anymore. Here is where the problem/lesson learned about planning is:
I used to make decisions fast and often without consulting anything other than my own agenda. I used to be guilty of praying that God would work according to my very detailed plans rather than fully trusting His. It is silly to think I could become so focused on my own plans and still think I was allowing God to be in control of me day to day. There is a fine balance to be found between not wasting your day/time/resources by thinking ahead a bit and truly being free to adjust to life as God leads. One sign you may need help with this is if you constantly have feelings of disappointment or failure for things 'not going as you had planned.' I have become very familiar and comfortable with things not going as I planned as I never have before. It's quite freeing, really. When you give up pretending to be in control over your life and trust God, you employ someone who is actually capable!
God is immovable. His plan will not be halted by even the most obsessively painstakingly detailed hour to hour monthly planner. Who do we think we are here, people? We can either go His way quickly, willingly and cheerfully on our feet, or we can go dragged, kicking, screaming, pouting, donkey-legs-out where He wants us to go...right? Sometimes our only choice in life is the level of resistance. I have learned that some difficulties in life are simply the aftermath of the self-created injuries from resistance. Ouch. (Note: stubborn people often learn the hard way, by painful experience.) I'm *trying* to go His way now, walking, no more donkey-legs.
I do know that without a doubt, God will continue to bless us if we seek to remain in His will, no matter how things turn out, or where we go next. I've experienced this to be true. I wish I had figured this out sooner. I hope to keep this in the forefront of my mind (...and stay off my stubborn behind).
I'll try to update as things unfold. Thank you for your prayers.
Nicole
I have to tell you all, God has been good in providing helps in all forms when we need them. I can't praise God enough for the amazing ways in which He is evident in our lives through this. One huge bonus of being so sick is there is no doubt about a real and living Savior. His presence is undeniable when things suddenly just simply unfold before us out of complete confusion at times. We have this first trip mostly hammered out, but not the next. We are learning to take things one at a time, in faith, as we never did before.
This may be no big revelation to you, and if that is the case, I am very glad, but I have learned something I would like to share. As a person who used to plan things way in advance and stick tight to my plans, it is a big deal for me to learn to give my "planning" up for "whatever-comes-next" instead. Even at the risk of appearing flaky, unreliable, lazy and all of those other undesirables that type-A personalities loathe, I do not plan like I once did. Regrettably, I gave up my planning problem only by force, so I cannot toot my own horn here. (Note: more force required to change more stubborn people.) Currently, I am often unable to even plan to cook supper a few hours later, so I rarely make plans anymore. Here is where the problem/lesson learned about planning is:
I used to make decisions fast and often without consulting anything other than my own agenda. I used to be guilty of praying that God would work according to my very detailed plans rather than fully trusting His. It is silly to think I could become so focused on my own plans and still think I was allowing God to be in control of me day to day. There is a fine balance to be found between not wasting your day/time/resources by thinking ahead a bit and truly being free to adjust to life as God leads. One sign you may need help with this is if you constantly have feelings of disappointment or failure for things 'not going as you had planned.' I have become very familiar and comfortable with things not going as I planned as I never have before. It's quite freeing, really. When you give up pretending to be in control over your life and trust God, you employ someone who is actually capable!
God is immovable. His plan will not be halted by even the most obsessively painstakingly detailed hour to hour monthly planner. Who do we think we are here, people? We can either go His way quickly, willingly and cheerfully on our feet, or we can go dragged, kicking, screaming, pouting, donkey-legs-out where He wants us to go...right? Sometimes our only choice in life is the level of resistance. I have learned that some difficulties in life are simply the aftermath of the self-created injuries from resistance. Ouch. (Note: stubborn people often learn the hard way, by painful experience.) I'm *trying* to go His way now, walking, no more donkey-legs.
I do know that without a doubt, God will continue to bless us if we seek to remain in His will, no matter how things turn out, or where we go next. I've experienced this to be true. I wish I had figured this out sooner. I hope to keep this in the forefront of my mind (...and stay off my stubborn behind).
I'll try to update as things unfold. Thank you for your prayers.
Nicole
Monday, March 25, 2013
Correction
I spoke with my doctor and he thinks I had a sort of sleep walking/narcoleptic type episode, not a seizure. After his explanation, it makes sense to me. He had some suggestions about improving my sleep cycles and doing a detox for 4 weeks to see if that helps me.
I just thought I better update with the correct info!
Thank you for praying for me/us,
Nicole
I just thought I better update with the correct info!
Thank you for praying for me/us,
Nicole
Sunday, March 24, 2013
3/24 Seizure info & this mornings seizure
Apparently, this morning I had a seizure while in bed with Jim. I have had mild seizures before, but nothing like this one.
Here is info about the seizures that have affected me. The story of today's is below:
ABSENCE SEIZURES
Absence seizures cause a short loss of consciousness (just a few seconds) with few or no symptoms. The patient, typically interrupts an activity and stares blankly. These seizures begin and end abruptly and may occur several times a day. Patients are usually not aware that they are having a seizure, except that they may be aware of "losing time.
Example: ("Mom! Mom! You never listen.") I've have people tell me long stories and I cannot recall any part of later. I find myself stuck into a loop of thoughts that won't stop that are typically unimportant and it closes off my senses to what's going on around me. People think I just don't listen. It's more like I "can't" listen when that happens.
MYOCLONIC SEIZURE
Myoclonic seizures consist of sporadic jerks, usually on both sides of the body. Patients sometimes describe the jerks as brief electrical shocks. When violent, these seizures may result in dropping or involuntarily throwing objects.
(Examples- these happen most when I'm relaxed. During the day, I fight against them. It feels like an electrical pulse that jerks your leg or arm or whatever. Small motors skills are hindered by these because I can't keep steady hands or fingers because of them. Jim experiences these the most when I am sleeping and beating him up or thrashing in the bed all night. I drop a lot of things and fumble my fingers. I get electrical shocks that stiffen a limb or my whole spine, my neck, pelvis, whatever. It results in a sudden jerk for no reason)
CLONIC SEIZURES
Clonic seizures are repetitive, rhythmic jerks that involve both sides of the body at the same time.
(Jim said these repetitive rhythmic movements when I'm asleep are faster than anyone could ever do awake. Nerves are firing uninhibited by a conscious brain to slow it down. It would appear like squeezing my fists repetitively really super fast or "bicycling" my legs in bed, scratching on the sheets, etc.)
Tonic seizures are characterized by stiffening of the muscles.
(The stiffening is by far the most uncomfortable thing of them all. Drugs don't relieve it. I've had it last from 1 hour to 6 hours. It's the highest threshold of pain for me. You feel like your muscles need to stretch to relax, so you stretch, but they instantly ball back up tight as before. It typically affects my arms, legs, entire back, and neck and even my jaw. I've tried every medicine, water, minerals, etc and cannot get it to stop. It just has to run it's course. It's so painful it's made me behave desperate and crazy- going downstairs without appropriate clothing on (and not caring at all) digging in cabinets for all the drugs and supplements I could find that might help, guzzling water in case it's dehydration, eating bananas for potassium and praying for mercy for hours. It has been just pure desperation to relieve the vice grip on my body. When it's done, I can sleep a whole day.
PARTIAL SEIZURES
Partial seizures are divided into simple, complex and those that evolve into secondary generalized seizures. The difference between simple and complex seizures is that during simple partial seizures, patients retain awareness; during complex partial seizures, they lose awareness.
Simple partial seizures are further subdivided into four categories according to the nature of their symptoms: motor, autonomic, sensory, or psychological. Motor symptoms include movements such as jerking and stiffening. Sensory symptoms caused by seizures involve unusual sensations affecting any of the five senses (vision, hearing, smell, taste, or touch). When simple partial seizures cause sensory symptoms only (and not motor symptoms), they are called "auras."
COMPLEX PARTIAL SEIZURES
Complex partial seizures, by definition, include impairment of awareness. Patients seem to be "out of touch," "out of it," or "staring into space" during these seizures. There may also be some "complex" symptoms called automatisms. Automatisms consist of involuntary but coordinated movements that tend to be purposeless and repetitive. Common automatisms include lip smacking, chewing, fidgeting, and walking.
HERE IS THE STORY OF THIS MORNING
This morning I had my first complex partial seizure. I would reply to some questions, but was behaving abnormally. I don't remember all that was said or done. Jim had brought up a coffee for me in bed to drink. Tom came up blowing a whistle and playing around our bed and Jim said I stared at the wall and didn't acknowledge him at all. (Even though the whistle was quite obnoxious and hard to ignore) Willy came up to get Tom and I don't remember seeing him come in at all. Then, I asked Jim why is everything double? The fan was double, the walls were wonky and covered in green iridescent scaly wall paper. Willy had extra arms. Of course it wasn't so, but it was to me. Jim asked if he could take my coffee for me since it was just sitting on my chest. I declined and then took a sip. Afterward, it was tipping like it would spill, so he asked again and then I leaned forward a little like I would take another drink, but then just let it spill all over my chest and stomach 3-4 inches from my mouth. I had no reaction to the spill at all. Then I asked Jim, "Am I ok?" He said, "I don't know." (I don't remember this at all.) Jim went and got towels to clean me up. He asked me if he should take me to the hospital and I didn't adamantly refuse like normal, I just didn't reply. I fell asleep before he was even done cleaning me up. Then, my poor husband who is already worried to death about how much longer I have, cried on me as I slept.
A day in our lives. Central Nervous System infections make life interesting, everyday!
SOURCES about seizure facts:
Epilepsy Foundation: "Types of Seizures."
National Institute of Neurological Disorders and Stroke: "Seizures and Epilepsy: Hope Through Research."
Epilepsy Foundation: "Recognizing Seizures and First Aid."
Here is info about the seizures that have affected me. The story of today's is below:
ABSENCE SEIZURES
Absence seizures cause a short loss of consciousness (just a few seconds) with few or no symptoms. The patient, typically interrupts an activity and stares blankly. These seizures begin and end abruptly and may occur several times a day. Patients are usually not aware that they are having a seizure, except that they may be aware of "losing time.
Example: ("Mom! Mom! You never listen.") I've have people tell me long stories and I cannot recall any part of later. I find myself stuck into a loop of thoughts that won't stop that are typically unimportant and it closes off my senses to what's going on around me. People think I just don't listen. It's more like I "can't" listen when that happens.
MYOCLONIC SEIZURE
Myoclonic seizures consist of sporadic jerks, usually on both sides of the body. Patients sometimes describe the jerks as brief electrical shocks. When violent, these seizures may result in dropping or involuntarily throwing objects.
(Examples- these happen most when I'm relaxed. During the day, I fight against them. It feels like an electrical pulse that jerks your leg or arm or whatever. Small motors skills are hindered by these because I can't keep steady hands or fingers because of them. Jim experiences these the most when I am sleeping and beating him up or thrashing in the bed all night. I drop a lot of things and fumble my fingers. I get electrical shocks that stiffen a limb or my whole spine, my neck, pelvis, whatever. It results in a sudden jerk for no reason)
CLONIC SEIZURES
Clonic seizures are repetitive, rhythmic jerks that involve both sides of the body at the same time.
(Jim said these repetitive rhythmic movements when I'm asleep are faster than anyone could ever do awake. Nerves are firing uninhibited by a conscious brain to slow it down. It would appear like squeezing my fists repetitively really super fast or "bicycling" my legs in bed, scratching on the sheets, etc.)
Tonic seizures are characterized by stiffening of the muscles.
(The stiffening is by far the most uncomfortable thing of them all. Drugs don't relieve it. I've had it last from 1 hour to 6 hours. It's the highest threshold of pain for me. You feel like your muscles need to stretch to relax, so you stretch, but they instantly ball back up tight as before. It typically affects my arms, legs, entire back, and neck and even my jaw. I've tried every medicine, water, minerals, etc and cannot get it to stop. It just has to run it's course. It's so painful it's made me behave desperate and crazy- going downstairs without appropriate clothing on (and not caring at all) digging in cabinets for all the drugs and supplements I could find that might help, guzzling water in case it's dehydration, eating bananas for potassium and praying for mercy for hours. It has been just pure desperation to relieve the vice grip on my body. When it's done, I can sleep a whole day.
PARTIAL SEIZURES
Partial seizures are divided into simple, complex and those that evolve into secondary generalized seizures. The difference between simple and complex seizures is that during simple partial seizures, patients retain awareness; during complex partial seizures, they lose awareness.
Simple partial seizures are further subdivided into four categories according to the nature of their symptoms: motor, autonomic, sensory, or psychological. Motor symptoms include movements such as jerking and stiffening. Sensory symptoms caused by seizures involve unusual sensations affecting any of the five senses (vision, hearing, smell, taste, or touch). When simple partial seizures cause sensory symptoms only (and not motor symptoms), they are called "auras."
COMPLEX PARTIAL SEIZURES
Complex partial seizures, by definition, include impairment of awareness. Patients seem to be "out of touch," "out of it," or "staring into space" during these seizures. There may also be some "complex" symptoms called automatisms. Automatisms consist of involuntary but coordinated movements that tend to be purposeless and repetitive. Common automatisms include lip smacking, chewing, fidgeting, and walking.
HERE IS THE STORY OF THIS MORNING
This morning I had my first complex partial seizure. I would reply to some questions, but was behaving abnormally. I don't remember all that was said or done. Jim had brought up a coffee for me in bed to drink. Tom came up blowing a whistle and playing around our bed and Jim said I stared at the wall and didn't acknowledge him at all. (Even though the whistle was quite obnoxious and hard to ignore) Willy came up to get Tom and I don't remember seeing him come in at all. Then, I asked Jim why is everything double? The fan was double, the walls were wonky and covered in green iridescent scaly wall paper. Willy had extra arms. Of course it wasn't so, but it was to me. Jim asked if he could take my coffee for me since it was just sitting on my chest. I declined and then took a sip. Afterward, it was tipping like it would spill, so he asked again and then I leaned forward a little like I would take another drink, but then just let it spill all over my chest and stomach 3-4 inches from my mouth. I had no reaction to the spill at all. Then I asked Jim, "Am I ok?" He said, "I don't know." (I don't remember this at all.) Jim went and got towels to clean me up. He asked me if he should take me to the hospital and I didn't adamantly refuse like normal, I just didn't reply. I fell asleep before he was even done cleaning me up. Then, my poor husband who is already worried to death about how much longer I have, cried on me as I slept.
A day in our lives. Central Nervous System infections make life interesting, everyday!
SOURCES about seizure facts:
Epilepsy Foundation: "Types of Seizures."
National Institute of Neurological Disorders and Stroke: "Seizures and Epilepsy: Hope Through Research."
Epilepsy Foundation: "Recognizing Seizures and First Aid."
Wednesday, February 27, 2013
The Latest News
I got my latest blood tests done. Some old news, some new.
Problems that are unresolved continual problems are: thyroid instability, cortisol low (from adrenal fatigue), candida high, hormone levels low, and cytomegalovirus antibodies are very, very high.
New problems are: a low platelet count and glucose level too high. Usually my glucose is too low, so I suspect glucose/insulin regulation is what the problem actually is here. Another problem of concern is a my C4a level is 12,240. Normal is 0-2,830. This is a measure of bodily inflammation due to immune system response to pathogens. It means, there are still many bacteria, viral, fungal and/or protozoal infections out of control and my immune system is working hard. This number alarmed me because I am on anti-inflammatories around the clock for pain, low dose steroids at times, an antibiotic, anti fungal and an anti-protozoal medication which are all anti-inflammatory in nature and should lower that number considerably. I wonder how high it would be if I stopped all anti-inflammatory medication?
Things to be grateful for are: my liver enzymes have returned to normal in response to liver cleaning herbs and care. They have been high since last summer and I've been working to reduce the enzyme level. Thank God! My B12 level which was very low when I went to Oregon has rebounded with my IV's and is beyond the high side of normal now. This is good! My iron levels have responded well and I'm in the normal range there too. These are all in response to treatments we have been doing to support organs and build nutrition.
Jim and I have been working hard to improve my health. We are exhausted physically, financially and trying hard to keep spiritually where we want to be despite our daily difficulties. We are a bit at a loss what to do now. I haven't spoken to my primary care doc yet about these results. My Oregon doc is a $180 appt to discuss this with, so we have held off calling him as Jim has missed a lot of work recently with the snow and FMLA days. Hopefully soon we can connect with them both and make a plan and things we will have a plan as to what to do next.
Pray for our stamina for the long haul on this for my whole family as there is no easy or fast fix, direction to go since there are multiple paths we could take, and for me personally- please pray for my fatigue, pain, and hypersensitive nerves.
By hypersensitive I mean, my eyes are overly sensitive to things like fluorescent lighting and to driving. Usually, I'm half deaf from my ear surgery years ago, but everything sounds overly loud to me now. Worst of all, my skin crawls and itches and is so sensitive that normal touch often ranges from annoying to painful. I feel like I am covered in rash and itch like mad, but nothing is on my skin. I startle easy and the lights and sounds bother me so much at times it makes me nauseated. I have better and worse days with this, but it's been a problem for several weeks now and has made an already bad situation worse. It is probably related to the inflammation I suspect making my nerves overly sensitive.
Thank you all for asking and caring for us and for all of your gifts including monetary gifts, encouraging cards with verses sent to me, your prayers, emails, FB messages and for simply not forgetting us. I haven't done a perfect job thanking each person and for each gift and for that I apologize. You have all been treasured by our family and have been an amazing example of a church family for our children, which is priceless.
"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away." (Revelation 21:4)
He "shall change our vile body, that it may be fashioned like unto his glorious body, according to the working whereby he is able even to subdue all things unto himself" (Philippians 3:21)
"And of his fullness have all we received, and grace for grace." (John 1:16)
Problems that are unresolved continual problems are: thyroid instability, cortisol low (from adrenal fatigue), candida high, hormone levels low, and cytomegalovirus antibodies are very, very high.
New problems are: a low platelet count and glucose level too high. Usually my glucose is too low, so I suspect glucose/insulin regulation is what the problem actually is here. Another problem of concern is a my C4a level is 12,240. Normal is 0-2,830. This is a measure of bodily inflammation due to immune system response to pathogens. It means, there are still many bacteria, viral, fungal and/or protozoal infections out of control and my immune system is working hard. This number alarmed me because I am on anti-inflammatories around the clock for pain, low dose steroids at times, an antibiotic, anti fungal and an anti-protozoal medication which are all anti-inflammatory in nature and should lower that number considerably. I wonder how high it would be if I stopped all anti-inflammatory medication?
Things to be grateful for are: my liver enzymes have returned to normal in response to liver cleaning herbs and care. They have been high since last summer and I've been working to reduce the enzyme level. Thank God! My B12 level which was very low when I went to Oregon has rebounded with my IV's and is beyond the high side of normal now. This is good! My iron levels have responded well and I'm in the normal range there too. These are all in response to treatments we have been doing to support organs and build nutrition.
Jim and I have been working hard to improve my health. We are exhausted physically, financially and trying hard to keep spiritually where we want to be despite our daily difficulties. We are a bit at a loss what to do now. I haven't spoken to my primary care doc yet about these results. My Oregon doc is a $180 appt to discuss this with, so we have held off calling him as Jim has missed a lot of work recently with the snow and FMLA days. Hopefully soon we can connect with them both and make a plan and things we will have a plan as to what to do next.
Pray for our stamina for the long haul on this for my whole family as there is no easy or fast fix, direction to go since there are multiple paths we could take, and for me personally- please pray for my fatigue, pain, and hypersensitive nerves.
By hypersensitive I mean, my eyes are overly sensitive to things like fluorescent lighting and to driving. Usually, I'm half deaf from my ear surgery years ago, but everything sounds overly loud to me now. Worst of all, my skin crawls and itches and is so sensitive that normal touch often ranges from annoying to painful. I feel like I am covered in rash and itch like mad, but nothing is on my skin. I startle easy and the lights and sounds bother me so much at times it makes me nauseated. I have better and worse days with this, but it's been a problem for several weeks now and has made an already bad situation worse. It is probably related to the inflammation I suspect making my nerves overly sensitive.
Thank you all for asking and caring for us and for all of your gifts including monetary gifts, encouraging cards with verses sent to me, your prayers, emails, FB messages and for simply not forgetting us. I haven't done a perfect job thanking each person and for each gift and for that I apologize. You have all been treasured by our family and have been an amazing example of a church family for our children, which is priceless.
"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away." (Revelation 21:4)
He "shall change our vile body, that it may be fashioned like unto his glorious body, according to the working whereby he is able even to subdue all things unto himself" (Philippians 3:21)
"And of his fullness have all we received, and grace for grace." (John 1:16)
Monday, January 21, 2013
Phone visit with Dr V, Jan 21, 2013
I had my check up with Dr V today via telephone. He asked me to consider getting IV chelation done in Wichita three times a week or come back to his office for chelation (and other treatments) to reduce my toxic metal load (among other things.) He said he'd like me in Oregon for 8 weeks, but I just can't see how either Wichita or Oregon can be done either financially or practically speaking. IV chelation cannot be done safely at home. So, I convinced him to give me additional things to try at home first.
He wants me to do a lot more system support via supplements, add several things to my IV's plus increase their frequency, stay on the antibiotics Dr. B has me on and report back to him. Adrenal fatigue and hypo-thyroid are big issues as well as the MTHFR gene that is causing my natural detox body processes not to work. My and Babesia load is high, CMV virus is beyond the reference chart and Candida is very high as well. In a nutshell, these are the sources of all my problems.
The new plan means IV's everyday, except Friday, since I have to take Jacob to get his allergy shot in KC and re-stock house supplies and groceries that day. I am to take a pile of pills three times a day so complicated I made a program in my phone to remind me! I took 25 pills at lunch. The last 6 pills were hard to get down. Over half of them are the largest size capsules they make. Blech. Six days of IV's a week are debilitating because they take a long time, plus several of them wipe me out physically so I have to nap for hours afterward. Several IV's have to be done when Jim is home so I have a driver and an adult available should a problem occur so it puts us on a schedule.
I'm working on ordering the necessary supplies to put the new treatment plan in place. The worst part is giving up more time and more money that I'd prefer to spend on my family for these diseases with no guarantee really that I'll be better for it. I am reasonably sure both doctors know how to help me though. It's a perplexing thing to know the Lord can heal me without any of it and then decide where to draw the line on how much treatment to do, how much money to spend and how much hope to put in any of it. Is there an easy answer to this?
I have to praise God because we have experienced several very timely helps in the forms of food, monetary gifts and encouraging messages that can only be from Him moving the hearts of people all around us. This is not to mention the many personal lessons and re-prioritizing that inevitably happen when health issues demand so many resources from a family. My only goal is to be able to be well enough to be a mother and wife. I used to have many other ideas of things I wanted to do with my time, none anywhere near as important as those. As complicated as my health and treatment plan has become, my personal wants have become refreshingly simple.
Thank you for caring enough to read.
He wants me to do a lot more system support via supplements, add several things to my IV's plus increase their frequency, stay on the antibiotics Dr. B has me on and report back to him. Adrenal fatigue and hypo-thyroid are big issues as well as the MTHFR gene that is causing my natural detox body processes not to work. My and Babesia load is high, CMV virus is beyond the reference chart and Candida is very high as well. In a nutshell, these are the sources of all my problems.
The new plan means IV's everyday, except Friday, since I have to take Jacob to get his allergy shot in KC and re-stock house supplies and groceries that day. I am to take a pile of pills three times a day so complicated I made a program in my phone to remind me! I took 25 pills at lunch. The last 6 pills were hard to get down. Over half of them are the largest size capsules they make. Blech. Six days of IV's a week are debilitating because they take a long time, plus several of them wipe me out physically so I have to nap for hours afterward. Several IV's have to be done when Jim is home so I have a driver and an adult available should a problem occur so it puts us on a schedule.
I'm working on ordering the necessary supplies to put the new treatment plan in place. The worst part is giving up more time and more money that I'd prefer to spend on my family for these diseases with no guarantee really that I'll be better for it. I am reasonably sure both doctors know how to help me though. It's a perplexing thing to know the Lord can heal me without any of it and then decide where to draw the line on how much treatment to do, how much money to spend and how much hope to put in any of it. Is there an easy answer to this?
I have to praise God because we have experienced several very timely helps in the forms of food, monetary gifts and encouraging messages that can only be from Him moving the hearts of people all around us. This is not to mention the many personal lessons and re-prioritizing that inevitably happen when health issues demand so many resources from a family. My only goal is to be able to be well enough to be a mother and wife. I used to have many other ideas of things I wanted to do with my time, none anywhere near as important as those. As complicated as my health and treatment plan has become, my personal wants have become refreshingly simple.
Thank you for caring enough to read.
Monday, January 14, 2013
January Update
Well we made it through all the holidays and birthdays at our house. We kept it simple and as stress free as possible. In fact, we just took down our tree. Everyone knows the Christmas decorations never survive past Dec 26th at my house unless something is wrong. :)
As far as my health goes, it's no better than November, maybe worse. Liver enzymes are still elevated, albeit maybe a bit less. Pancreas is holding on. Haven't had a flare up in a little while. Thyroid is still out of whack. I feel like I've gotten more and more tired and I'm slowly creeping back to the way I was before I went to Oregon. I don't know what can be done about it more than what we are doing. Adrenal fatigue is just difficult to reverse alone, much less with multiple diseases continually sapping the life out of me.
I had a flare up of Bartonella and Babesia and in Nov/Dec sometime and experienced the worst night of my life. I was only semi lucid that night and clearly remember the pain, but I don't remember that I said or did anything. I thought I suffered quietly in bed save for some uncomfortable flip flopping. Apparently, that wasn't the case. I thrashed wildly about even accidentally kicking and hitting Jim. I bolted suddenly out of bed crying out and got up an wandered the house moaning and crying out in pain. I remember taking various pain medicines, muscle relaxers, sleeping medicine, minerals and water for cramps and powerpaks over the long hours thinking something would work to calm my cramping muscles, but nothing did. I have had these cramps before, but usually minerals and water and/or a muscle relaxer calms it within an hour or two. This time it went from 10pm until 6am nonstop. It's so agonizing I could not think clearly at all and as I said, I have a partial amnesia of that night. I remember thinking it was worse than childbirth pain and funny thing was Jim said later that it reminded him of childbirth too. Too bad we didn't get a baby for it this time. :) Jim of course didn't sleep either and he read from Hebrews aloud to me and prayed the whole night for me. I think he aged a few years from worry that night.
After this episode, I went to the doctor and he surmised Bartonella and Babesia were fully active and wreaking havoc, so I began a treatment for them that will last a good portion of this year. I only hope it works this time. We have succeeded in beating the diseases back, but never have I been fully cured of it. Bartonella must be treated first because it's immunosuppressive and keeps you from successfully treating Babesiosis. Babesia is like malaria and is treated with precisely the same medication. The symptoms of Babesiosis are terrible and it's hard to endure it while we painstakingly try to gain ground on Bartonella. They cannot be treated simultaneously. I have done about 40 days of Bartonella treatment so far, In a couple more weeks we will see how things are and whether to keep on this medication or switch to treating Babesiosis.
Jim has taken on a lot of my responsibilities and the kids have had to do even more to help keep our household running. I have resigned myself to do as Jim has asked and sleep when I am tired (against my true wishes) and reserve energy by letting go things that don't matter. My house isn't as clean as I would keep it and I can't do certain things with the kids like I would prefer, but if I don't give my body a chance to heal, I won't be here at all. This isn't the life I would choose, but I am certain there is purpose in it. Obviously, God's ways are not our ways. I don't mean to sound unhappy either, because I am not.
The insurance trouble goes on. The money they paid before they stopped payment on the treatments they had pre-approved they are now requesting a refund back on. They want us to pay them back by the end of the month. The frustrating thing for me is that had they said they wouldn't cover any of my treatment in Oregon, I would not have spent that money to begin with. They claim they should not have approved it but I made decisions to get treatment because I was told 70% would come back to me and indeed it did at first. They didn't say otherwise until I had left Oregon. I have to keep reminding myself God knew this all along. Good things came from those treatments although I would not have chosen to spend so much money there. Jim and I both agree had I not gone I could very well be dead now. I have to remind myself all of this to let it go.
I am doing IV infusion treatments at home- several times a week. My vitamins and minerals are sapped fast and I can feel it when I need another bag. My body gets more twitchy and tired as I run out of B vitamins and magnesium. I also discovered IV magnesium alone to be a fairly powerful pain reliever. I am guessing because it's a vasodilator. Of course I can't overdose it, but had I known this that terrible night, I would have put a magnesium bag through my port. I expect the IV meds are helping because I decline between treatments but it's not enough alone to cure me. I am hoping the IV support alongside the antibiotics may prove to be the key since I have only previously done one or the other but not both simultaneously. Who knows through. Truly, I mostly am just trying to live as long as I can. I don't really expect anymore than I'll be fully well in this life.
The kids are doing well. Tom and Shreya are blissfully clueless that other Moms don't do IV's at home. The other three forget and have to be reminded at times why our lives are different than they'd like. We don't run around or do as much as we once did, but in some ways it's a blessing. Instead, we play board games, enjoy cooking a meal together, talk, look forward to Downton Abbey on PBS to watch with the older children, have more time to watch and crack up at Tom and Shreya's ridiculous antics and Jim has started reading aloud to me everyday. It's the highlight of my day honestly. He is reading a book about Saint Patrick to me now. I sew sometimes when I can. Some days just making a meal or two is about all I can muster to do. Friday is my busy day when I have to drive to Kansas City for Jacob's allergy shots and get my groceries. I have a steroid I take that day every week, or any other day I leave the house for long. I like to joke that my family eats so much that I have to take steroids to be able to do the shopping each week for them. Hehe
For those of you who are well and running all the time as I once was, slow down a little. There are things you miss when you keep too busy and too distracted to notice the simple things. Do more of the things that make memories. If you don't know what that is, ask your kids what they remember most fondly...then do that.
Thank you all for your prayers and support.
As far as my health goes, it's no better than November, maybe worse. Liver enzymes are still elevated, albeit maybe a bit less. Pancreas is holding on. Haven't had a flare up in a little while. Thyroid is still out of whack. I feel like I've gotten more and more tired and I'm slowly creeping back to the way I was before I went to Oregon. I don't know what can be done about it more than what we are doing. Adrenal fatigue is just difficult to reverse alone, much less with multiple diseases continually sapping the life out of me.
I had a flare up of Bartonella and Babesia and in Nov/Dec sometime and experienced the worst night of my life. I was only semi lucid that night and clearly remember the pain, but I don't remember that I said or did anything. I thought I suffered quietly in bed save for some uncomfortable flip flopping. Apparently, that wasn't the case. I thrashed wildly about even accidentally kicking and hitting Jim. I bolted suddenly out of bed crying out and got up an wandered the house moaning and crying out in pain. I remember taking various pain medicines, muscle relaxers, sleeping medicine, minerals and water for cramps and powerpaks over the long hours thinking something would work to calm my cramping muscles, but nothing did. I have had these cramps before, but usually minerals and water and/or a muscle relaxer calms it within an hour or two. This time it went from 10pm until 6am nonstop. It's so agonizing I could not think clearly at all and as I said, I have a partial amnesia of that night. I remember thinking it was worse than childbirth pain and funny thing was Jim said later that it reminded him of childbirth too. Too bad we didn't get a baby for it this time. :) Jim of course didn't sleep either and he read from Hebrews aloud to me and prayed the whole night for me. I think he aged a few years from worry that night.
After this episode, I went to the doctor and he surmised Bartonella and Babesia were fully active and wreaking havoc, so I began a treatment for them that will last a good portion of this year. I only hope it works this time. We have succeeded in beating the diseases back, but never have I been fully cured of it. Bartonella must be treated first because it's immunosuppressive and keeps you from successfully treating Babesiosis. Babesia is like malaria and is treated with precisely the same medication. The symptoms of Babesiosis are terrible and it's hard to endure it while we painstakingly try to gain ground on Bartonella. They cannot be treated simultaneously. I have done about 40 days of Bartonella treatment so far, In a couple more weeks we will see how things are and whether to keep on this medication or switch to treating Babesiosis.
Jim has taken on a lot of my responsibilities and the kids have had to do even more to help keep our household running. I have resigned myself to do as Jim has asked and sleep when I am tired (against my true wishes) and reserve energy by letting go things that don't matter. My house isn't as clean as I would keep it and I can't do certain things with the kids like I would prefer, but if I don't give my body a chance to heal, I won't be here at all. This isn't the life I would choose, but I am certain there is purpose in it. Obviously, God's ways are not our ways. I don't mean to sound unhappy either, because I am not.
The insurance trouble goes on. The money they paid before they stopped payment on the treatments they had pre-approved they are now requesting a refund back on. They want us to pay them back by the end of the month. The frustrating thing for me is that had they said they wouldn't cover any of my treatment in Oregon, I would not have spent that money to begin with. They claim they should not have approved it but I made decisions to get treatment because I was told 70% would come back to me and indeed it did at first. They didn't say otherwise until I had left Oregon. I have to keep reminding myself God knew this all along. Good things came from those treatments although I would not have chosen to spend so much money there. Jim and I both agree had I not gone I could very well be dead now. I have to remind myself all of this to let it go.
I am doing IV infusion treatments at home- several times a week. My vitamins and minerals are sapped fast and I can feel it when I need another bag. My body gets more twitchy and tired as I run out of B vitamins and magnesium. I also discovered IV magnesium alone to be a fairly powerful pain reliever. I am guessing because it's a vasodilator. Of course I can't overdose it, but had I known this that terrible night, I would have put a magnesium bag through my port. I expect the IV meds are helping because I decline between treatments but it's not enough alone to cure me. I am hoping the IV support alongside the antibiotics may prove to be the key since I have only previously done one or the other but not both simultaneously. Who knows through. Truly, I mostly am just trying to live as long as I can. I don't really expect anymore than I'll be fully well in this life.
The kids are doing well. Tom and Shreya are blissfully clueless that other Moms don't do IV's at home. The other three forget and have to be reminded at times why our lives are different than they'd like. We don't run around or do as much as we once did, but in some ways it's a blessing. Instead, we play board games, enjoy cooking a meal together, talk, look forward to Downton Abbey on PBS to watch with the older children, have more time to watch and crack up at Tom and Shreya's ridiculous antics and Jim has started reading aloud to me everyday. It's the highlight of my day honestly. He is reading a book about Saint Patrick to me now. I sew sometimes when I can. Some days just making a meal or two is about all I can muster to do. Friday is my busy day when I have to drive to Kansas City for Jacob's allergy shots and get my groceries. I have a steroid I take that day every week, or any other day I leave the house for long. I like to joke that my family eats so much that I have to take steroids to be able to do the shopping each week for them. Hehe
For those of you who are well and running all the time as I once was, slow down a little. There are things you miss when you keep too busy and too distracted to notice the simple things. Do more of the things that make memories. If you don't know what that is, ask your kids what they remember most fondly...then do that.
Thank you all for your prayers and support.
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