Don't think my lack a posts is a sign I'm not feeling well. I know, I know, in a prior post I said just the opposite, but the unfortunate thing about lyme is there is a complete lack of consistency when it comes to presenting symptoms.
I actually have had only two bad days since Thursday. A bad day is a day where I am so lethargic I can't barely motivate myself to meet my own basic needs. Even if I tried to get up my body wouldn't work and allow me to cook or do a chore. These are days where I sit in the recliner and am only able to think about how helpless I am. If I were to lose my home or my husband I wouldn't even be able to motivate myself to get to the homeless shelter let alone figure out how to get myself help.
A good day is a day in which my body isn't aching, I'm awake and alert, my mood is positive and I have the desire to be productive. I am able to move around the house almost normally. I can cook my own lunch and get my own meds. I can do a load of laundry and pick the dog toys up off the rug. I think I am beginning to have more good days then bad thanks to the antibiotics. Unfortunately, having a good day and being able to do some general activities that take little thought doesn't mean I'm better.
I'm finding that I'm now more aware of the neurological symptoms. These are the symptoms that antibiotics in pill form won't touch. It will take shots, or IV antibiotics to break the blood brain barrier and start eradicating the lyme bacteria from my central nervous system.
This morning is an excellent example of the struggle I have with these symptoms. I woke up feeling relatively normal. I didn't feel the need to have a morning nap like I usually do after my second dose of meds. Instead I got up and headed toward the bathroom to shower with hopes of accomplishing a long to do list of tasks I had been saving for a good day. While in the shower I started to go over the to do list in my head. Very quickly I felt a mild seizure coming on. I then had to stop thinking and start emptying my mind, breathing slowly, so that I could relax and not have a seizure in the bathroom. Once I regained control of my body I finished my morning routine and returned to the couch physically and mentally exhausted. Unfortunately, the mere use of my brain to organize tasks by priority was to overstimulating. So here I sit, attempting to write this blog instead.
Writing this blog is extremely difficult. I have to stop and stare at the wall every couple of sentences to regain focus. Usually ideas flow from my brain to my fingers with ease but instead I am finding it difficult to retrieve the word I want to use from my brain and put it into the sentence. Actually, that's when I try to figure out what I want to say in each sentence. I've spent more time staring at the wall then I have typing.
So, my initial motivation to get things done today has been beat out my the lyme bacteria hanging out in my head. Not only does organized thought trigger seizures, but something as simple as writing a blog has worn me out.
Watching TV is difficult as well. I hear the people talking, but struggle to process what they said. Reading is a slow and laborious process for me too. I am finding that the only activity I can consistently do is play Candy Crush....that should tell you how little brain effort that game takes.
The good news is I am FEELING better. I am just not functional yet. The side affects of antibiotics aren't fun but I am so ready to get better I don't mind.
Tuesday, November 26, 2013
Monday, November 18, 2013
Vet's are in the Know...growing epidemic as observed by an increase in canine lyme
Cato the Ninja Dog has been sick. Well, maybe a little out of sorts would be a better description. Sunday his face swelled up significantly, the swelling went down but the little guy was shivering often, lethargic, was losing some hair and had a slight rash on his belly.
The swelling in his face went down but his continuing shivering concerned Scott and I. We discussed whether or not he should go to the vet. We would feel pretty silly spending money on a vet visit to be told that Cato was shivering because he was cold. We love this dog to pieces, but we are on a very tight budget with my medical expenses. In the end, Scott took him to the vet.
No worries! Cato was just having an allergic reaction to a possible bug bite. To be on the safe side Scott had him tested for Lyme. Our previous dog, Brownie, had lyme back in 2010 so we knew that Cato could be just as likely to catch it. (test came back negative)
What was maddening for Scott and I was how knowledgeable the Veterinarian was on the prevalence of lyme disease and the unreliable testing available for people. The vet shared that lyme testing in dog's is over 95% accurate but in humans the testing is lucky to have a 50% accuracy rate. Scott shared with the vet my story in how hard getting diagnosed was. The vet was shocked that I had been sick for 20 years but no one ever figured out what was wrong with me. What none of us get is why the medical community doesn't recognize that testing negative for lyme doesn't mean you don't have lyme. What I don't get is why vet's seem very educated on this fact. The vet told Scott that there has been a dramatic increase in dogs testing positive for lyme over the past few years. They are taking this epidemic very seriously.
Maybe I should have gone to the vet for treatment. Geesh.
So, how am I doing? Well, I stopped taking the medicine that was triggering so many seizures. I only had two seizures today. WooHoo! I went in to the hospital this morning and had my blood drawn. Scott packed it up and fedex came to the house and picked it up. Right now it's on it's way to IgenX lab in California. IgenX is a lab that specializes in testing for Lyme and it's co-infections.
Will anything show up in this testing? I have no idea. I am praying something does. I don't need a positive test result to start treatment. Lyme is a clinical diagnosis. I've already started treatment. I would like to have something come back positive to have on record for future battles with insurance companies and social security. (Yes, reluctantly I have started that process. I am determined to go back to work as soon as possible, but I have to be prepared just in case.)
So, $1000 out of pocket, it's like gambling. Unfortunately, it is necessary, and would help direct treatment easier if co-infections showed up.
I started my small dose of amoxicillin today. I was optimistic this morning that I wouldn't notice the small dose and would have more energy like I did before our trip. NOPE. I feel run down and unmotivated. I'm also getting the nasty side affects that come with antibiotics. Despite this, where I'm having fewer seizures now I have been able to do some paper work for our ATA School. It was nice to take a small burden of my overwhelmed husband. It is also nice to be able to watch tv and read again. (these activities were triggering seizures).
It's testing week in taekwondo! I am wishing I could be in the studio to see our students perform. I am enjoying listening to their yells downstairs while I chill up statirs on the couch.
I am thankful for all the kind messages and assistance in various forms I have received. Overall, if I'm writing a blog then I'm having an ok evening. Let's see what tomorrow brings.
The swelling in his face went down but his continuing shivering concerned Scott and I. We discussed whether or not he should go to the vet. We would feel pretty silly spending money on a vet visit to be told that Cato was shivering because he was cold. We love this dog to pieces, but we are on a very tight budget with my medical expenses. In the end, Scott took him to the vet.
No worries! Cato was just having an allergic reaction to a possible bug bite. To be on the safe side Scott had him tested for Lyme. Our previous dog, Brownie, had lyme back in 2010 so we knew that Cato could be just as likely to catch it. (test came back negative)
What was maddening for Scott and I was how knowledgeable the Veterinarian was on the prevalence of lyme disease and the unreliable testing available for people. The vet shared that lyme testing in dog's is over 95% accurate but in humans the testing is lucky to have a 50% accuracy rate. Scott shared with the vet my story in how hard getting diagnosed was. The vet was shocked that I had been sick for 20 years but no one ever figured out what was wrong with me. What none of us get is why the medical community doesn't recognize that testing negative for lyme doesn't mean you don't have lyme. What I don't get is why vet's seem very educated on this fact. The vet told Scott that there has been a dramatic increase in dogs testing positive for lyme over the past few years. They are taking this epidemic very seriously.
Maybe I should have gone to the vet for treatment. Geesh.
So, how am I doing? Well, I stopped taking the medicine that was triggering so many seizures. I only had two seizures today. WooHoo! I went in to the hospital this morning and had my blood drawn. Scott packed it up and fedex came to the house and picked it up. Right now it's on it's way to IgenX lab in California. IgenX is a lab that specializes in testing for Lyme and it's co-infections.
So, $1000 out of pocket, it's like gambling. Unfortunately, it is necessary, and would help direct treatment easier if co-infections showed up.
I started my small dose of amoxicillin today. I was optimistic this morning that I wouldn't notice the small dose and would have more energy like I did before our trip. NOPE. I feel run down and unmotivated. I'm also getting the nasty side affects that come with antibiotics. Despite this, where I'm having fewer seizures now I have been able to do some paper work for our ATA School. It was nice to take a small burden of my overwhelmed husband. It is also nice to be able to watch tv and read again. (these activities were triggering seizures).
It's testing week in taekwondo! I am wishing I could be in the studio to see our students perform. I am enjoying listening to their yells downstairs while I chill up statirs on the couch.
I am thankful for all the kind messages and assistance in various forms I have received. Overall, if I'm writing a blog then I'm having an ok evening. Let's see what tomorrow brings.
Saturday, November 16, 2013
Lyme focal seizure
I don't know if the term "Lyme Seizure" is even an official term. My brief research on Dr. Google tells me that the type of seizure's Lyme patients have are actually Focal Seizures. These seizures can take many forms, but the one common denominator is that the patient is conscious during the episode.
I'm talking about seizures because that has been my life for the past few days. As annoying as they are getting to be, it's a very distinct sign that neurological lyme is what I'm suffering from. Don't worry, I emailed my doc and she confirmed this is a normal response to the medicine I'm currently on. The antibiotic "metro", is likely to intensify neurological symptoms in lyme patients.
The question I've been pondering this week is WHEN the lyme bacteria began affecting my neurological system. I guess it doesn't matter. I am still processing the past twenty years of my life. My entire adult life.
Today both girls were home all day. I would have loved to have done something with them. The fall weather makes me want to decorate my house, cook goodies, do a project, play a game. Instead, I have been sitting on the couch all day barely able to speak let alone hold a conversation.
I'm feeling a bit better at the moment. My eyes are open, I'm on the computer, I will be thankful for this moment right now.
Lyme seizure's are interesting. I feel them coming on, I can even hold them off for a bit. It's like being nauseous. You feel like you have to puke, but you don't want to puke. After a while of feeling this way you realize puking would give you relief from the nausea. So then you WANT to throw up and you sit and wait for your body to do what it's trying to do. My seizure's don't make me exactly nauseous, maybe dizzy is a better description. But the experience is the same. I want to try and not have one, but after a while of feeling funky, I relax and wait for what is going to come tot come. I have found that when I let them come they aren't as bad. When I hold them off, trying to prevent them from happening I end up being over come by a huge seizure. Wednesday I only had one. Thursday I had a couple. Here I sit today and I have been having small ones all day, thus the reason I haven't left the couch.
I am attaching a video of the seizure because I think it's important to educate our community. If this video catches someones attention enough so that they want to learn more then having the seizure is worth it. We are in the middle of an epidemic so large I consider it a national crisis. Our government is ignoring the sickest of the sick in our country. My initial lyme test came back negative, that doesn't mean I don't have lyme. Our state just passed a law mandating that patients are informed of this when receiving a negative result on a lyme test. Despite this law, which was passed in June, I have had a doctor look me in the eye and say, "You DON'T have lyme". If I don't have lyme then why am I having seizure's due to the antibiotics?
I'm talking about seizures because that has been my life for the past few days. As annoying as they are getting to be, it's a very distinct sign that neurological lyme is what I'm suffering from. Don't worry, I emailed my doc and she confirmed this is a normal response to the medicine I'm currently on. The antibiotic "metro", is likely to intensify neurological symptoms in lyme patients.
The question I've been pondering this week is WHEN the lyme bacteria began affecting my neurological system. I guess it doesn't matter. I am still processing the past twenty years of my life. My entire adult life.
Today both girls were home all day. I would have loved to have done something with them. The fall weather makes me want to decorate my house, cook goodies, do a project, play a game. Instead, I have been sitting on the couch all day barely able to speak let alone hold a conversation.
I'm feeling a bit better at the moment. My eyes are open, I'm on the computer, I will be thankful for this moment right now.
Lyme seizure's are interesting. I feel them coming on, I can even hold them off for a bit. It's like being nauseous. You feel like you have to puke, but you don't want to puke. After a while of feeling this way you realize puking would give you relief from the nausea. So then you WANT to throw up and you sit and wait for your body to do what it's trying to do. My seizure's don't make me exactly nauseous, maybe dizzy is a better description. But the experience is the same. I want to try and not have one, but after a while of feeling funky, I relax and wait for what is going to come tot come. I have found that when I let them come they aren't as bad. When I hold them off, trying to prevent them from happening I end up being over come by a huge seizure. Wednesday I only had one. Thursday I had a couple. Here I sit today and I have been having small ones all day, thus the reason I haven't left the couch.
I am attaching a video of the seizure because I think it's important to educate our community. If this video catches someones attention enough so that they want to learn more then having the seizure is worth it. We are in the middle of an epidemic so large I consider it a national crisis. Our government is ignoring the sickest of the sick in our country. My initial lyme test came back negative, that doesn't mean I don't have lyme. Our state just passed a law mandating that patients are informed of this when receiving a negative result on a lyme test. Despite this law, which was passed in June, I have had a doctor look me in the eye and say, "You DON'T have lyme". If I don't have lyme then why am I having seizure's due to the antibiotics?
Friday, November 15, 2013
I will keep talking until you not only listen to me but you HEAR me
I have so many causes that are dear to my heart, but as of now, Chronic Lyme disease is the one topic I will talk about the most. I had NO IDEA the controversy around it. I had NO IDEA that it's a topic doctor's aren't educated on. I had NO IDEA a negative lyme test doesn't mean you don't have lyme.
I asked my PCP today if she had heard about the legislation passed in June concerning informing patients who are tested for lyme that a negative test result doesn't mean you don't have lyme. She had just heard about this in passing conversation over the past month or two.
Did you know that if you don't pass the initial lyme screening doctor's wont' test you for the more accurate Western Blot? That is CDC guideline. How does that make sense? You don't pass the more inaccurate test you don't get to have the test that is more detailed? What?! Seems pretty backwards to me.
I have spent 20 years ignoring lyme because that initial test came up negative. That test that only tests for one of the over one hundred strains of lyme. Even better, that one strain is a strain from Europe. (Plant fist to head)
I'm trying not to be angry. I'm trying to reprogram my brain. I have spent twenty years telling myself that symptoms I experienced weren't' as bad as I thought, or that they were in my head. Even now, when I'm having a focal seizure, my body is convulsing and my brain is saying "cut this out, you can control this, you're letting this happen" This is what twenty years of misdiagnosis has done to me.
So, I feel it's important to share this journey. I feel it's important that you know things, such as finding a doctor who treats chronic lyme means joining an underground network of private messages and quiet connections. Doctor's run a great risk when they treat chonic lyme.
I'm not a doctor, so I run no risk.
I will share this journey and hope that by doing so I am raising a level of awareness.
Light needs to be shed on the suffering of hundreds of thousands of citizens.
Light needs to be shed on our insurance companies refusal to pay for treatment.
My Lyme is neurological. I also most likely have co-infections making my treatment even more complicated. I need IV antibiotics because those nasty bugs are in my brain and the pills can't adequately cross the blood brain barrier. Insurance will only pay for one month of IV antibiotics and one month of in-home care.
My casual estimate is that we will be paying $1000 a month for medicine, supplements, appointments and blood work. I have no idea how we are going to do it, but we have to do it. My life literally depends on it. The CDC and our insurance companies don't want to acknowledge patients like me.
I want to live this disease out loud. I will be talking about it on facebook, please don't think it's attention seeking or complaining. I am trying to start dialogue that will not only educate, but also help others who are sick and don't know why. I don't want others to wait twenty years to figure it out.
I will be posting pictures and videos. I am doing this because I know what would have captured my attention before this. I saw things about LYME but I didn't think it was any different then any other disease people suffered from. The difference is the medical community not seeing, not understanding the suffering of the patients they see. The difference is that patients are forced to pay out of pocket for their treatment.
My diagnosis is a clinical diagnosis based on symptoms and the ruling out of all other possibilities. My diagnosis is confirmed by my reaction to the start of treatment. I am currently taking an antibiotic to stir the little bugs up. I will then have blood drawn Monday. The blood will be sent to a lab in California that specializes in Lyme testing. I will also be tested for co-infections. It is uncertain if anything will show up because I have been sick for so long and my immune system isn't responding to the disease. They test looking for an immune system response.
The first day on this antibiotic I felt like I had the flu and had a seizure. I am so thankful for that! It is a clear sign lyme is being killed. The die off of the bacteria cause what is called a HERX reaction which is basically an increase and intensifying of symptoms. So when things like tinnitus set in (a new symptom) I rejoice because I know there is a war going on and my body is doing it's job.
I say bring it on. I don't mind being sicker because I'm ready to get better!
I asked my PCP today if she had heard about the legislation passed in June concerning informing patients who are tested for lyme that a negative test result doesn't mean you don't have lyme. She had just heard about this in passing conversation over the past month or two.
Did you know that if you don't pass the initial lyme screening doctor's wont' test you for the more accurate Western Blot? That is CDC guideline. How does that make sense? You don't pass the more inaccurate test you don't get to have the test that is more detailed? What?! Seems pretty backwards to me.
I have spent 20 years ignoring lyme because that initial test came up negative. That test that only tests for one of the over one hundred strains of lyme. Even better, that one strain is a strain from Europe. (Plant fist to head)
I'm trying not to be angry. I'm trying to reprogram my brain. I have spent twenty years telling myself that symptoms I experienced weren't' as bad as I thought, or that they were in my head. Even now, when I'm having a focal seizure, my body is convulsing and my brain is saying "cut this out, you can control this, you're letting this happen" This is what twenty years of misdiagnosis has done to me.
So, I feel it's important to share this journey. I feel it's important that you know things, such as finding a doctor who treats chronic lyme means joining an underground network of private messages and quiet connections. Doctor's run a great risk when they treat chonic lyme.
I'm not a doctor, so I run no risk.
I will share this journey and hope that by doing so I am raising a level of awareness.
Light needs to be shed on the suffering of hundreds of thousands of citizens.
Light needs to be shed on our insurance companies refusal to pay for treatment.
My Lyme is neurological. I also most likely have co-infections making my treatment even more complicated. I need IV antibiotics because those nasty bugs are in my brain and the pills can't adequately cross the blood brain barrier. Insurance will only pay for one month of IV antibiotics and one month of in-home care.
My casual estimate is that we will be paying $1000 a month for medicine, supplements, appointments and blood work. I have no idea how we are going to do it, but we have to do it. My life literally depends on it. The CDC and our insurance companies don't want to acknowledge patients like me.
I want to live this disease out loud. I will be talking about it on facebook, please don't think it's attention seeking or complaining. I am trying to start dialogue that will not only educate, but also help others who are sick and don't know why. I don't want others to wait twenty years to figure it out.
I will be posting pictures and videos. I am doing this because I know what would have captured my attention before this. I saw things about LYME but I didn't think it was any different then any other disease people suffered from. The difference is the medical community not seeing, not understanding the suffering of the patients they see. The difference is that patients are forced to pay out of pocket for their treatment.
My diagnosis is a clinical diagnosis based on symptoms and the ruling out of all other possibilities. My diagnosis is confirmed by my reaction to the start of treatment. I am currently taking an antibiotic to stir the little bugs up. I will then have blood drawn Monday. The blood will be sent to a lab in California that specializes in Lyme testing. I will also be tested for co-infections. It is uncertain if anything will show up because I have been sick for so long and my immune system isn't responding to the disease. They test looking for an immune system response.
The first day on this antibiotic I felt like I had the flu and had a seizure. I am so thankful for that! It is a clear sign lyme is being killed. The die off of the bacteria cause what is called a HERX reaction which is basically an increase and intensifying of symptoms. So when things like tinnitus set in (a new symptom) I rejoice because I know there is a war going on and my body is doing it's job.
I say bring it on. I don't mind being sicker because I'm ready to get better!
Monday, November 11, 2013
Home with a plan
I'm using this blog as a way to update all of my friends and family as to what is going on with me and my health.
I'm home from a very long and tiring trip to DC. I'm slowly recovering some energy and processing all of the information I received at the doctor's appointment and all of the information concerning my treatment. I'm feeling very overwhelmed right now and am trying to slowly educate myself and prepare for the journey I am finding myself on.
I'm processing anger over years of illness. I had stopped going to the doctor's about my symptoms because there were no answers.
I was reminded how difficult it was to raise toddlers. I felt like a failure because I didn't have the energy to have a job during that time. When I tried to work I was so sick and tired that I would have to leave my job The best years were when I was homeschooling. I was able to set a schedule around my own health needs. That is how I was able to train in the martial arts and start the ATA school. I don't know if any of you have noticed, but in 2009, when I returned to work, I stopped being as involved in the daily running of the school. Scott and I knew this would happen when I decided to go to work. My history of headaches, needing a lot of sleep, and getting sick often would prevent me from "doing it all". I have found things like going gluten free, and using health products from Juuva have helped me have more energy and better health. Unfortunately, my brief times of finding energy and a better since of well being were always followed by a return of symptoms, or a change of symptoms.
I feel a sense of validation. I remember the summer of 1994, a year after my onset of symptoms. I was working at Living Waters. I would do my morning job and then sneak a nap in before morning chapel. I would do my lunch time chores and then take another nap in the afternoon. I remember being so exhausted I could barely stand it. I saw the nurse, spent some time in bed, didn't get better, went home to see my doctor, got tested for every disease and condition you could think off, still couldn't find anything wrong. I ended up leaving camp early that summer feeling like a complete failure. I was worried about people thinking badly of me. I just couldn't do it. I spent the next ten years going to the doctor about these symptoms until I finally gave up and figured that like Paul, this was my thorn in the side that I had to live with. I prayed that if it was God's will He would relieve me of my suffering.
I am grieving the lost years with my children. All the activities they wanted to do when all I could do is sleep, or hide in my room from a headache. Playing games, doing crafts, cooking....all the things I wanted to do with them, I often didn't because it was just to overwhelming and I was to tired. The taekwondo trips I spent with a blinding headache. The family outings I spent with a blinding headache.
20 years.
I have a new awareness of my own strength. I have pushed and functioned to the best of my ability until my body literally stopped working. I am now struggling to accept that I have NO ability to take care of myself. If it weren't for my wonderful husband I would be in tough shape. I hate, hate, hate that I can't take care of myself right now. I hate that I am unable to work, to be productive, instead I feel like a burden.
I am scared. I am sicker then I realized. The Lyme isn't only neurological, but it is beginning to affect my cardiovascular system. I have no choice but to begin treatment. Treatment that isn't recognized by the CDC. I have joined a club of people who are the sickest on the planet and also the most ignored by our government. Treatment will make me sicker for awhile, will cost money that only God can provide, but I don't know much longer I can survive without treatment. It isn't a choice.
So I sit here. I have said it before, but I will say it again. God is teaching me to depend on Him and not myself. So far He has provided, so I ask your prayers that I will stop worrying.
So, now my venting is done I will share the plan.
I will start a heavy load of antibiotics on Wednesday. They will hopefully stir up the stinking bugs in my body so they will show up in testing. On Monday I am having specific blood testing drawn to test for not only Lyme, but for co-infections. My diagnosis is a clinical diagnosis based on history, and doctor's office exam. The tests for Lyme are unreliable and best. The longer you have been sick the more difficult it is to get positive test results. On Tuesday I will start amoxicilian and remain on that until my next appointment (which will be over the phone) to go over my test results. Once the results are back, Ginger will decide on the best course of treatment. Most likely shots, and maybe IV treatment. I am also on a detox diet. I am trying to prepare my liver and gut for the antibiotics. I will also be purchasing therapeutic levels of probiotics , along with some supplements for my liver to ensure I protect my internal organs during treatment. I am on an elimination diet to check for food allergies. I am also calcium and zinc deficient so I will need to take care of those issues.
Lastly, I appreciate all opinions and advice. At this point I will be strictly following the treatment given by my practitioner. I have spent a lot of time researching and I have asked lots of questions. Now that I have decided on a course of treatment I need to trust and follow the instructions of the practitioner I have chosen. I am blessed that I got into her just in time. Her practice is now full and she isn't accepting new patients. Lyme is her specialty and she has extensive training. Not only that, but she, herself, has recovered from Lyme. My story is HER story.
If you have read this entire blog then I assume you are someone who cares about me and my family. Thank you! I beg for your prayers that we can get through this very difficult winter. I will be laying low from this point out. Cato and Netflix are my new best friends :)
I'm home from a very long and tiring trip to DC. I'm slowly recovering some energy and processing all of the information I received at the doctor's appointment and all of the information concerning my treatment. I'm feeling very overwhelmed right now and am trying to slowly educate myself and prepare for the journey I am finding myself on.
I'm processing anger over years of illness. I had stopped going to the doctor's about my symptoms because there were no answers.
I was reminded how difficult it was to raise toddlers. I felt like a failure because I didn't have the energy to have a job during that time. When I tried to work I was so sick and tired that I would have to leave my job The best years were when I was homeschooling. I was able to set a schedule around my own health needs. That is how I was able to train in the martial arts and start the ATA school. I don't know if any of you have noticed, but in 2009, when I returned to work, I stopped being as involved in the daily running of the school. Scott and I knew this would happen when I decided to go to work. My history of headaches, needing a lot of sleep, and getting sick often would prevent me from "doing it all". I have found things like going gluten free, and using health products from Juuva have helped me have more energy and better health. Unfortunately, my brief times of finding energy and a better since of well being were always followed by a return of symptoms, or a change of symptoms.
I feel a sense of validation. I remember the summer of 1994, a year after my onset of symptoms. I was working at Living Waters. I would do my morning job and then sneak a nap in before morning chapel. I would do my lunch time chores and then take another nap in the afternoon. I remember being so exhausted I could barely stand it. I saw the nurse, spent some time in bed, didn't get better, went home to see my doctor, got tested for every disease and condition you could think off, still couldn't find anything wrong. I ended up leaving camp early that summer feeling like a complete failure. I was worried about people thinking badly of me. I just couldn't do it. I spent the next ten years going to the doctor about these symptoms until I finally gave up and figured that like Paul, this was my thorn in the side that I had to live with. I prayed that if it was God's will He would relieve me of my suffering.
I am grieving the lost years with my children. All the activities they wanted to do when all I could do is sleep, or hide in my room from a headache. Playing games, doing crafts, cooking....all the things I wanted to do with them, I often didn't because it was just to overwhelming and I was to tired. The taekwondo trips I spent with a blinding headache. The family outings I spent with a blinding headache.
20 years.
I have a new awareness of my own strength. I have pushed and functioned to the best of my ability until my body literally stopped working. I am now struggling to accept that I have NO ability to take care of myself. If it weren't for my wonderful husband I would be in tough shape. I hate, hate, hate that I can't take care of myself right now. I hate that I am unable to work, to be productive, instead I feel like a burden.
I am scared. I am sicker then I realized. The Lyme isn't only neurological, but it is beginning to affect my cardiovascular system. I have no choice but to begin treatment. Treatment that isn't recognized by the CDC. I have joined a club of people who are the sickest on the planet and also the most ignored by our government. Treatment will make me sicker for awhile, will cost money that only God can provide, but I don't know much longer I can survive without treatment. It isn't a choice.
So I sit here. I have said it before, but I will say it again. God is teaching me to depend on Him and not myself. So far He has provided, so I ask your prayers that I will stop worrying.
So, now my venting is done I will share the plan.
I will start a heavy load of antibiotics on Wednesday. They will hopefully stir up the stinking bugs in my body so they will show up in testing. On Monday I am having specific blood testing drawn to test for not only Lyme, but for co-infections. My diagnosis is a clinical diagnosis based on history, and doctor's office exam. The tests for Lyme are unreliable and best. The longer you have been sick the more difficult it is to get positive test results. On Tuesday I will start amoxicilian and remain on that until my next appointment (which will be over the phone) to go over my test results. Once the results are back, Ginger will decide on the best course of treatment. Most likely shots, and maybe IV treatment. I am also on a detox diet. I am trying to prepare my liver and gut for the antibiotics. I will also be purchasing therapeutic levels of probiotics , along with some supplements for my liver to ensure I protect my internal organs during treatment. I am on an elimination diet to check for food allergies. I am also calcium and zinc deficient so I will need to take care of those issues.
Lastly, I appreciate all opinions and advice. At this point I will be strictly following the treatment given by my practitioner. I have spent a lot of time researching and I have asked lots of questions. Now that I have decided on a course of treatment I need to trust and follow the instructions of the practitioner I have chosen. I am blessed that I got into her just in time. Her practice is now full and she isn't accepting new patients. Lyme is her specialty and she has extensive training. Not only that, but she, herself, has recovered from Lyme. My story is HER story.
If you have read this entire blog then I assume you are someone who cares about me and my family. Thank you! I beg for your prayers that we can get through this very difficult winter. I will be laying low from this point out. Cato and Netflix are my new best friends :)
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