I had this great blog all written in my head this morning. It has taken until now for me to feel up to getting on the computer, and now I can't remember the meaningful words I had wanted.
So, I will try to write the same thoughts down, but it probably won't be as well written as what I had transcribed in my head.
As many of you probably know, Scott and I were interviewed for a news story on lyme last week.
This news story introduced me to many more people suffering with lyme, as they reached out to contact me.
I am overwhelmed by the number of people suffering in our state, who have no support system. All though I am stressed about money and paying for treatment along with paying are bills, I am lucky to have supportive family and friends who actually BELIEVE we are sick.
This disease is horrible. People suffer for years with no answers. Their support system gets tired of hearing about their ailments, especially when doctors are telling these individuals there is nothing wrong, or its all in their head. I heard a story of one lady who went to the doctor with her husband due to the seizures she was having. The doctor told her nothing was wrong with her and when the husband asked about the seizures the doctor told him that his wife was just having tantrums. Can you believe it? I would have a hard time believing it if I hadn't experienced it myself.
So, Lymies suffer for years, friends and family get tired of the constant illness, the sick individual is slowly abandoned and ignored.
This isn't the only reason Lymies have a hard time maintain a support network. Even if we never tell anyone about our illnesses and attempt to function normally, we still are sick. Maintain friendships is near impossible. I can speak for myself on this. I never have had the ability to socialize on a personal level. I have never been able to visit people, or hang out with friends. I often blamed it on having a job and running a business, but the truth is I was just plain exhausted. I was to embarrassed to tell people I couldn't go out because I wanted to stay home and sleep. Making plans was impossible because I never new when I was going to have a headache. Most times that Scott and I tried to go out, I was miserable because the extra activity almost always caused a severe headache. Sundays were especially frustrating. Scott and I would both have the day off, but after church we came home and went to bed. We needed to rest up to prepare for another busy week. The kids were always forced to fend for themselves. If we wanted to do a family activity we had to skip church so that we could sleep in, allowing us to have the energy to do the activity in the afternoon.
So, as you can see, people with lyme struggle to maintain a support system. It's not like suddenly having a accident, or coming down with a disease like cancer. In these scenarios, the sick were previously healthy and had maintained healthy relationships. These established relationships help the suddenly sick to get through their crisis.
Lymies often have been sick for years. They are often isolated, or if they work their relationships are superficial with no depth. When the lyme takes over so that they can no longer function on there own, there is no one left in their lives to help.
I have heard this over and over again over the past five months. It is heartbreaking to hear people talk about how excited they were to finally get a diagnosis only to have their families not believe them.
And hear we are. The CDC suspects 300,000 new cases of lyme a year. This is a number of epidemic proportions. Along with getting infected through a tick, babies can get infected from their mother, and a study was just published indicating a high probability that it is transmitted sexually. Those of us in the lyme world aren't surprised. There are thousands of couples who are both infected along with their children. Despite this, our government denies the existence of chronic lyme. Doctors aren't educated on how to diagnosis. The CDC says diagnosis has to be done clinically, based on symptoms. The doctor in my news story made the statement that tests were very accurate.....WHAT?! Even the CDC says they aren't! To add insult to injury, our government only allocates $25,000,000.00 a year to lyme research. Compare this to the hundreds of millions that they give to other infectious diseases. I am not exaggerating when I make the statement that THE GOVERNMENT IS IGNORING A PANDEMIC!
Just like when citizens had to fight hard to get the government to pay attention to AIDS through protests, we need to stand up to the government again and demand attention be paid to lyme disease.
THERE'S A PROBLEM, those of us who are sick and desperate for our government to pay attention, are to sick to stand up and fight. Unfortunately, our illness has also caused many of us to lose our friends and family. We have no one to stand up for us.
So, here is my plea.....our problem could one day be YOUR problem. You have a choice. To continue and ignore what is happening to the citizens of our country, our state, our world, or to stand up and demand something be done. Yes, I said our world. This is a problem in many countries, not just ours. This is a problem that is literally in your back yard. I am going to post my news story. I want you to watch it, watch it close. A year ago I was on the news preforming martial arts, and now I am on the news unable to walk and having seizures. THIS COULD BE YOU NEXT! This isn't a fear tactic, this is a statement of fact. For all you know, lyme is growing in your body right now. Ticks are very small, you could have been bitten by one and never known it. So you aren't just standing up for me and my family, you aren't just standing up for those in your community who are sick, you are standing up for yourself!
Click HERE to watch my story
Maine Lyme Disease Rally and Protest
Faith Race: Moving forward through life challenges, persevering during struggles, sharing what we've learned with others, staying focused on the goal God has given us, celebrating milestones, not giving up till we reach the finish line.
Sunday, January 26, 2014
Monday, January 20, 2014
Childhood Worries
When I was a kid, I had this overwhelming worry that something was seriously wrong with me. I often worried that I was dying of some unknown disease. It was like I had this sense that there was an illness growing in my body. Of course, I was always assured that wasn't the case.
I use to tell my mom about symptoms. After awhile, I felt silly always complaining and I just kept my physical complaints to myself.
I constantly had swollen lymph nodes.
I had urinary track issues that were unable to be explained.
I would have moments when my heart pounded in my chest, or I felt like I couldn't breathe, or it hurt to take a deep breath.
Sometimes I felt dizzy, or like I was going to faint.
The weirdest was when I had moments where I felt like I was moving in slow motion, or the opposite would happen where I felt like I was on fast forward.
These were all regular symptoms that I didn't talk much about. They went along with the knee pain, neck pain, headaches, double vision.....why wouldn't I think I was dying? Scary stuff for a kid.
Even as an adult, I have had this overwhelming impression that something was seriously wrong. I just knew there was a time bomb ticking away in my body that nobody could locate. I would be placated when doctor's would do blood work and tell me I was fine. Unfortunately, the fears would slowly creep back.
It was such a sense of validation to find out I was right all along. That feeling, deep down in my gut, was my body telling me something wasn't right.
I use to pass it off as crazy anxiety.
Now, I want you, the reader, to know it's OK to question your doctors. It's OK to push for answers. If you feel something isn't quite right, trust that gut instinct. Don't accept, "nothing's wrong" as the answer if you truly feel something IS wrong!
I can wish that I had figured it out years ago, but wishing doesn't change anything. What I WILL do, is to keep sharing my families experiences so that others can learn and maybe seek help before they get as sick as I am.
I use to tell my mom about symptoms. After awhile, I felt silly always complaining and I just kept my physical complaints to myself.
I constantly had swollen lymph nodes.
I had urinary track issues that were unable to be explained.
I would have moments when my heart pounded in my chest, or I felt like I couldn't breathe, or it hurt to take a deep breath.
Sometimes I felt dizzy, or like I was going to faint.
The weirdest was when I had moments where I felt like I was moving in slow motion, or the opposite would happen where I felt like I was on fast forward.
These were all regular symptoms that I didn't talk much about. They went along with the knee pain, neck pain, headaches, double vision.....why wouldn't I think I was dying? Scary stuff for a kid.
Even as an adult, I have had this overwhelming impression that something was seriously wrong. I just knew there was a time bomb ticking away in my body that nobody could locate. I would be placated when doctor's would do blood work and tell me I was fine. Unfortunately, the fears would slowly creep back.
It was such a sense of validation to find out I was right all along. That feeling, deep down in my gut, was my body telling me something wasn't right.
I use to pass it off as crazy anxiety.
Now, I want you, the reader, to know it's OK to question your doctors. It's OK to push for answers. If you feel something isn't quite right, trust that gut instinct. Don't accept, "nothing's wrong" as the answer if you truly feel something IS wrong!
I can wish that I had figured it out years ago, but wishing doesn't change anything. What I WILL do, is to keep sharing my families experiences so that others can learn and maybe seek help before they get as sick as I am.
Monday, January 13, 2014
Day in the Life
I have been away from this blog for awhile. I have been herxing. Herxing is when bacteria are dying off and your body is unable to eliminate the dead bacteria as fast as it's being killed. That isn't the exact scientific answer, it's just the quick description. Basically, your present symptoms get worse, and new or old symptoms appear. Anyway, I haven't felt up to blogging, and I didn't want to just write blogs describing how sick I am.
Last week, Scott got back his test results, which were positive for lyme. He started his antibiotics and it hasn't taken long for his herx reaction to happen.
Right now, the two of us having a conversation consists of, "What did you say?", "I don't remember", "I know what I want to say, I can't spit it out", "huh?", "never mind".
The first thing he noticed was an increase in fatigue. He then noticed increased vertigo.
And then there was today. I am praying God allows one of us to be able to function when the other one can't.
I woke up, Scott started to cook my breakfast like he usually does. I am usually unable to stand up long enough to cook the eggs and bacon which I need to eat when taking one of my meds. I need 20 grams of fat each time I take the Mepron. I take it twice a day...that can be a whole other blog.
Scott found himself unable to finish cooking, thankfully I was able to take over.
Scott then drove the kids to school and I took my meds and fell back asleep.
I woke up two hours later to find Scott sitting at the other end of the couch staring blankly at the wall.
I asked him if he was ok, he held his hand up to show me how bad he was shaking. He looked like he had Parkinson Disease. When he got up it was apparent that his whole body was shaking. He looked like I do when I try to walk around. This was a dilemma, he had a chimney to clean today and we really need that income. There was no way he could drive let alone climb on a roof.
I called our son, he was able to help Wednesday. Time for him to learn the family business! He did come over and drive Scott into town to run some errands.
While they were gone I spent the morning making phone calls.
Talked to HR. I found out my employment is safe until March even though my disability runs out in February. I'm waiting to hear back to see if my medical insurance will be in place until March as well.
Talked to the girls Lyme Literate Doctor's Office to reschedule one of their appointments. Both girls will be evaluated for Lyme in April.
Talked to the case manager at my new insurance company. I have an appointment with their social worker to find local resources that can assist us.
Talked to the head of the Maine State Lyme Nonprofit about possible ways they can assist with education in correlation with our fundraising efforts. This lady has never met me but seemed to know I could over do it and reminded me a couple of times to make sure I am having people help me with my project.
Scott arrives home, looking like he was going to throw up. I quickly decided I would be picking my daughter up at school. He also shared the news that half of our meds still weren't into the pharmacy and also payment for my bicilin injections was denied by my new insurance. That's $800 I don't have for a medication I desperately need.
Made plans with Mrs. Stanley to ensure class could be taught tonight. I decided it's time I start helping out with teaching class, even if I have to do it from a wheel chair.
While waiting in the jeep for Chelsea to come out of school I called the insurance company and was told my doctor would have to call and file for an appeal stating why the injections were medically necessary. I then shot an email out to my doctor. Hopefully that gets taken care of quickly, I only have enough injections left for this week.
On my way home Chelsea asks me if she would get as sick as us when she starts treatment. I told her I didn't think so because she didn't have the severe symptoms we did. When discussing the difference in symptoms she informed me that she gets dizzy all the time. Her words, "Sometimes when I get up and leave my room everything goes black like I can't see and I feel like I'm going to fall down or fall to the side. I have to hold the wall to not fall over". I asked her how long this had been going on. She told me she always has done that. Add that to the list: tinnitus, sensitivity to sound, worsening eye sight, stiff neck and neck pain, headaches, knee pain, fatigue, rib pain....I suggested she write down all of her symptoms. She replied, "I don't know what symptoms I have, I think every thing is normal because all the symptoms you've told me about I've head as long as I can remember". GREAT. She was right. The only symptoms we know of are symptoms I have mentioned out loud and she then says, "Oh, I have that! That's a symptom?"
Yup. I may need to prepare for my girls to get worse before they get better.
Get back home and discovered my husband was sound asleep. I put together a class plan.
By now I am so exhausted I felt ill. I was ecstatic when Scott woke up feeling a little better and able to teach. He wanted to save my assistance for tomorrow, which is a busier night.
We then realized tonight was an injection night. I expressed my concern that he was shaking to much to give me my shot. He demonstrated to me that if held his wrist with his other hand he was able to keep his hand from shaking. Um, OK, I'm still not convinced, but there isn't much I can do about it.
I took my Galaxy supplement and felt a bit better. I drove Chelsea back to school for cheering, very thankful I had arranged a ride home for her.
I took a phone call from a potential student. I was able to talk for twenty minutes, give clear information, and I didn't have a seizure! PROGRESS!
Once home I realize I was navigating the stairs better then usual. YAY! I can't feel the bottom of my feet, but my legs are working ok today. As long as I don't walk to far. (i.e. up and down my hall way once or twice)
So I decided to blog. My upper back hurts and my arms are sore like I have done a hundred push ups. Despite this, I enjoyed being the healthier one today. Days like this help me get through the days I am really sick.
Don't forget, our family isn't the only family who has these kind of days. We are raising money this winter for two other families besides our own to pay for appointments, medicine, supplements, and travel. Click on the link to make a donation!
http://www.gofundme.com/atalymewarriors
Last week, Scott got back his test results, which were positive for lyme. He started his antibiotics and it hasn't taken long for his herx reaction to happen.
Right now, the two of us having a conversation consists of, "What did you say?", "I don't remember", "I know what I want to say, I can't spit it out", "huh?", "never mind".
The first thing he noticed was an increase in fatigue. He then noticed increased vertigo.
And then there was today. I am praying God allows one of us to be able to function when the other one can't.
I woke up, Scott started to cook my breakfast like he usually does. I am usually unable to stand up long enough to cook the eggs and bacon which I need to eat when taking one of my meds. I need 20 grams of fat each time I take the Mepron. I take it twice a day...that can be a whole other blog.
Scott found himself unable to finish cooking, thankfully I was able to take over.
Scott then drove the kids to school and I took my meds and fell back asleep.
I woke up two hours later to find Scott sitting at the other end of the couch staring blankly at the wall.
I asked him if he was ok, he held his hand up to show me how bad he was shaking. He looked like he had Parkinson Disease. When he got up it was apparent that his whole body was shaking. He looked like I do when I try to walk around. This was a dilemma, he had a chimney to clean today and we really need that income. There was no way he could drive let alone climb on a roof.
I called our son, he was able to help Wednesday. Time for him to learn the family business! He did come over and drive Scott into town to run some errands.
While they were gone I spent the morning making phone calls.
Talked to HR. I found out my employment is safe until March even though my disability runs out in February. I'm waiting to hear back to see if my medical insurance will be in place until March as well.
Talked to the girls Lyme Literate Doctor's Office to reschedule one of their appointments. Both girls will be evaluated for Lyme in April.
Talked to the case manager at my new insurance company. I have an appointment with their social worker to find local resources that can assist us.
Talked to the head of the Maine State Lyme Nonprofit about possible ways they can assist with education in correlation with our fundraising efforts. This lady has never met me but seemed to know I could over do it and reminded me a couple of times to make sure I am having people help me with my project.
Scott arrives home, looking like he was going to throw up. I quickly decided I would be picking my daughter up at school. He also shared the news that half of our meds still weren't into the pharmacy and also payment for my bicilin injections was denied by my new insurance. That's $800 I don't have for a medication I desperately need.
Made plans with Mrs. Stanley to ensure class could be taught tonight. I decided it's time I start helping out with teaching class, even if I have to do it from a wheel chair.
While waiting in the jeep for Chelsea to come out of school I called the insurance company and was told my doctor would have to call and file for an appeal stating why the injections were medically necessary. I then shot an email out to my doctor. Hopefully that gets taken care of quickly, I only have enough injections left for this week.
On my way home Chelsea asks me if she would get as sick as us when she starts treatment. I told her I didn't think so because she didn't have the severe symptoms we did. When discussing the difference in symptoms she informed me that she gets dizzy all the time. Her words, "Sometimes when I get up and leave my room everything goes black like I can't see and I feel like I'm going to fall down or fall to the side. I have to hold the wall to not fall over". I asked her how long this had been going on. She told me she always has done that. Add that to the list: tinnitus, sensitivity to sound, worsening eye sight, stiff neck and neck pain, headaches, knee pain, fatigue, rib pain....I suggested she write down all of her symptoms. She replied, "I don't know what symptoms I have, I think every thing is normal because all the symptoms you've told me about I've head as long as I can remember". GREAT. She was right. The only symptoms we know of are symptoms I have mentioned out loud and she then says, "Oh, I have that! That's a symptom?"
Yup. I may need to prepare for my girls to get worse before they get better.
Get back home and discovered my husband was sound asleep. I put together a class plan.
By now I am so exhausted I felt ill. I was ecstatic when Scott woke up feeling a little better and able to teach. He wanted to save my assistance for tomorrow, which is a busier night.
We then realized tonight was an injection night. I expressed my concern that he was shaking to much to give me my shot. He demonstrated to me that if held his wrist with his other hand he was able to keep his hand from shaking. Um, OK, I'm still not convinced, but there isn't much I can do about it.
I took my Galaxy supplement and felt a bit better. I drove Chelsea back to school for cheering, very thankful I had arranged a ride home for her.
I took a phone call from a potential student. I was able to talk for twenty minutes, give clear information, and I didn't have a seizure! PROGRESS!
Once home I realize I was navigating the stairs better then usual. YAY! I can't feel the bottom of my feet, but my legs are working ok today. As long as I don't walk to far. (i.e. up and down my hall way once or twice)
So I decided to blog. My upper back hurts and my arms are sore like I have done a hundred push ups. Despite this, I enjoyed being the healthier one today. Days like this help me get through the days I am really sick.
Don't forget, our family isn't the only family who has these kind of days. We are raising money this winter for two other families besides our own to pay for appointments, medicine, supplements, and travel. Click on the link to make a donation!
http://www.gofundme.com/atalymewarriors
Wednesday, December 18, 2013
Lets talk money-why lyme patients fundraise
First, know this, in the Lyme world patients don't go to the doctor and then get billed like when you go to the emergency room. Lymies can't make payments, can't save the bills for later, can't ignore the bills are there. These things are only possible when visiting medical professionals in the regular world. In Lyme World we don't get seen, don't get tests done, don't get medicine without cash up front.
The first few visits to a Lyme Literate Doctor are the most expensive. The appointments are longer and you have to pay for testing. Not only this, most of us have to pay to travel.
My first visit, not including costs of travel, $750.
My testing, $1100
My second visit, $500
Then like other Lymies, it's time to begin treatment.
Monthly appointments, $250
Monthly medicine copays, $200
Probiotics and other supplements, $200
Let me add that up for you, $650 a month. That's only as long as I have insurance. I won't even begin to discuss medicine costs not covered by insurance. Ok, maybe I will. The two meds pictured below are $4000 total if I didn't have insurance.
Lyme can be passed on through pregnancy and nursing. Both of my daughters have multiple symptoms that they have had their entire lives and that are clear indicators of them catching lyme as fetuses. I have spent my years mothering teaching them pain and discomfort is normal and it was their jobs to learn to function despite it. How would I know any different? I have been suffering from symptoms my whole life. They would complain of the same symptoms I had. I thought everyone felt this way and that we just had to toughen up. Sad, Sad, Sad, it is inexcusable that they suffer even a little. I've done a good job, a lot of you have no idea that these beautiful ladies have issues with pain, fatigue, and other symptoms associated with lyme. So, let's talk the cost of that. We won't include costs of traveling.
The first few visits to a Lyme Literate Doctor are the most expensive. The appointments are longer and you have to pay for testing. Not only this, most of us have to pay to travel.
My first visit, not including costs of travel, $750.
My testing, $1100
My second visit, $500
Then like other Lymies, it's time to begin treatment.
Monthly appointments, $250
Monthly medicine copays, $200
Probiotics and other supplements, $200
Let me add that up for you, $650 a month. That's only as long as I have insurance. I won't even begin to discuss medicine costs not covered by insurance. Ok, maybe I will. The two meds pictured below are $4000 total if I didn't have insurance.
That's not all. Lymies often are unable to work. The most important part to healing is resting and reducing stress. Physical exertion, stress, and over stimulation can cause worsening symptoms. Along with this treatment doesn't take months, it takes YEARS!
If that's not enough, very often lyme is found in more then one family member. Although I am trying to focus on me when I blog, I've warned my family that I will be mentioning them at times. It is so important for our society to understand the struggles of this disease!

Initial visit with pediatric lyme litterate doctor, $950x2
Testing:$1000x2
Follow up visits every other month:,$350x2
We will underestimate copays on meds, they aren't as sick as I am, $75x2
Probiotics and Supplements: $200x2
Feeling overwhelmed yet? I'm still not done. The verdict is out as to whether or not lyme is an STD, BUT there is evidence pointing in that direction and some lyme docs will tell you it is. Either way, the process of searching out a diagnosis for me led to us looking at my husband and many of the symptoms he is plagued with. His list is ALMOST as long as mine. In fact, he is where I was at five years ago when looking at symptoms. We lucked out and found a llmd close to home who takes insurance. I'm not seeing this doctor because he is unable to treat as aggressively as I need. He needs to tote the line because he bills insurance and we live in a state that doesn't protect lyme literate doctors from having insurance companies bring them before the medical review board. We are hoping that we have caught things early enough that a less aggressive approach will be effective.
So, we will estimate copays for meds and doctors appointments at $100 a month.
Testing was $250 (we did just the basic lyme test. Any co-infections will be treated based on symptoms)
Probiotics and supplements, $200
Ok, it's time to add it up. The cost of our family to get life saving treatment is, $1,850 a month. That is after a down payment (testing and initial appointments) of: $6,400!
This isn't just my family. This is many families in our community. So many parents are selling of possessions, downsizing their homes, working multiple jobs, just to keep their children and spouses ALIVE.
This is why we fund-raise.
Every year our taekwondo studio raises money for a cause. I bet you can guess what we are raising money for this year! Not just for my family, but we will help a couple of other families in our community who have multiple family members fighting lyme. We will do this not just this year, BUT EVERY YEAR! There are so many great causes, but for me this is personal. Our government can pay for so many things: welfare, foodstanps, housing, insurance, drug treatment, therapy....I'm not knocking this. I won't lie, I will be utilizing some of these resources. My issue is I am guessing many of our society members who are to sick to work for various reasons , have lyme. Our government is denying chronic lyme exists and states lyme is easy to diagnosis and easy to treat. I'm living proof of the opposite. I have been told multiple times in the past twenty years that I don't have lyme. After shelling out tons of cash I finally get a test back that says I unequivocally have lyme AND coinfections. There are hundreds of thousands of individuals who know differently then what our government wants us to believe.
So, when you see posts and blogs and fliers concerning lyme fundraisers, give a few dollars.
The last great thing I want to share with you about lymies is that we ALWAYS GIVE BACK. We don't just take and take, we turn around and help each other because we are the only ones who have each others back. Support us, because you may very well find yourself in our shoes some day in the future. I promise, we will help you.
The last great thing I want to share with you about lymies is that we ALWAYS GIVE BACK. We don't just take and take, we turn around and help each other because we are the only ones who have each others back. Support us, because you may very well find yourself in our shoes some day in the future. I promise, we will help you.
Thursday, December 12, 2013
from despair to elation ~ how I feel now that I have a positive western blot
I can't even begin to express the joy I feel right now. It was like a weight was lifted off my chest and I could breath again. Yes, I already had the lyme diagnosis based on symptoms. Yes, I had proof of the diagnosis based on how I responded to antibiotics. For what ever reason, having a piece of paper that says POSITIVE gives me a validation that I didn't know I needed.
All the headaches, the fatigue, the lack of motivation, the crazy changing emotions, the ditziness...cough..I mean the lack of focus, the concentration and memory issues, the difficulty working out, the muscle fatigue and weakness, the dizziness, the vertigo, the sensitivities......I guess you get the point. There was a legitimate reason as to why I felt this way.
My LLMD (lyme litterate doc) thinks I was infected in childhood. In the back of my head I thought that as well. I just didn't say that because I knew for sure I had a funky rash along with joint pain and flu like symptoms in 1993. If I go back further in my childhood my third grade year stands out in my head. That was when my migraines started, migraines that originated from neck pain. In fact, back then the doctor didn't think they were migraines. They didn't present that way. The headaches were unique and painful. So painful I ended up hospitalized at the age of 9. After a few days of tests I was sent to a psychiatrist. The psychiatrists didn't find anything of significance wrong with me. My mom started sending me to a chiropractor after that. I was so tired of being drug to appointments I just said that the chiropractor was helping. He may have helped a little, it's hard to tell. Also at the age of 8 or 9 I had a lot of knee pain. I had fluid under my knee cap, and my knees would often lock up on me. Of course all these symptoms would come and go. At that young age I felt judged. I felt like others thought I was being a hypochondriac. Actually as an adult, I have described myself in just that way when talking about how I was when I was young. I felt so badly about over reacting to these symptoms that I have been less then sympathetic when my own children have complained of various ailments. I didn't want them to be "hypochondriacs" like I was. HA! Have I been wrong! I'm looking at everything differently now.
When my LLMD told me my test results I felt many feelings in just a few seconds. I cheered with excitement and then immediately started crying, I hate crying so that quickly turned to anger. Right now I am just full of gratitude. After all these years of tests for various ailments coming back negative I was finally awarded with a positive test result. My first positive test felt like the first time I got an A on a difficult subject. I felt like I finally was an over achiever in the sickness world! How many times have I gone to the ER for various pain to be sent home with a shrug of the shoulders. YAY! I HAVE A DISEASE!
The other feelings are there under the surface. How sad is it that I don't even know what it feels like to be healthy? My husband and children have never known me healthy. Heck, I don't even know myself healthy! I've been sick for almost thirty years! I'm not angry at doctors from my early childhood. Lyme was only discovered a few years before I became ill. I am angry about it not being discovered around the time they realized my symptoms COULD be due to lyme. You know, around 1994 when they first tested me for it. I can be angry, but honestly, the doctors back then were only doing what the CDC and IDSA recommended. Unfortunately, the doctors around here are STILL doing what the IDSA recommends. We need to change those recommendations!
So, right now I will relish the fact that someday in the future I may be able to live the way healthy people live. I may be able to do things with my family without pain. I may be able to train and be a better martial artist. I may be able to be more productive in all areas of my life. I may not be scatter brained any more! I hope you will all still love me when some of the quirkiness I'm known for is gone!
My LLMD is very optimistic that I will recover at a fast pace. (fast to lyme standards is still months or years). I have responded beautifully to the amoxicillian I have been on. Now it's time for the big guns to be put on board! I can't wait to start loading on the heavy meds! I will get through the side affects and HERXING because of my desire to discover what HEALTHY feels like!
All the headaches, the fatigue, the lack of motivation, the crazy changing emotions, the ditziness...cough..I mean the lack of focus, the concentration and memory issues, the difficulty working out, the muscle fatigue and weakness, the dizziness, the vertigo, the sensitivities......I guess you get the point. There was a legitimate reason as to why I felt this way.
My LLMD (lyme litterate doc) thinks I was infected in childhood. In the back of my head I thought that as well. I just didn't say that because I knew for sure I had a funky rash along with joint pain and flu like symptoms in 1993. If I go back further in my childhood my third grade year stands out in my head. That was when my migraines started, migraines that originated from neck pain. In fact, back then the doctor didn't think they were migraines. They didn't present that way. The headaches were unique and painful. So painful I ended up hospitalized at the age of 9. After a few days of tests I was sent to a psychiatrist. The psychiatrists didn't find anything of significance wrong with me. My mom started sending me to a chiropractor after that. I was so tired of being drug to appointments I just said that the chiropractor was helping. He may have helped a little, it's hard to tell. Also at the age of 8 or 9 I had a lot of knee pain. I had fluid under my knee cap, and my knees would often lock up on me. Of course all these symptoms would come and go. At that young age I felt judged. I felt like others thought I was being a hypochondriac. Actually as an adult, I have described myself in just that way when talking about how I was when I was young. I felt so badly about over reacting to these symptoms that I have been less then sympathetic when my own children have complained of various ailments. I didn't want them to be "hypochondriacs" like I was. HA! Have I been wrong! I'm looking at everything differently now.
When my LLMD told me my test results I felt many feelings in just a few seconds. I cheered with excitement and then immediately started crying, I hate crying so that quickly turned to anger. Right now I am just full of gratitude. After all these years of tests for various ailments coming back negative I was finally awarded with a positive test result. My first positive test felt like the first time I got an A on a difficult subject. I felt like I finally was an over achiever in the sickness world! How many times have I gone to the ER for various pain to be sent home with a shrug of the shoulders. YAY! I HAVE A DISEASE!
The other feelings are there under the surface. How sad is it that I don't even know what it feels like to be healthy? My husband and children have never known me healthy. Heck, I don't even know myself healthy! I've been sick for almost thirty years! I'm not angry at doctors from my early childhood. Lyme was only discovered a few years before I became ill. I am angry about it not being discovered around the time they realized my symptoms COULD be due to lyme. You know, around 1994 when they first tested me for it. I can be angry, but honestly, the doctors back then were only doing what the CDC and IDSA recommended. Unfortunately, the doctors around here are STILL doing what the IDSA recommends. We need to change those recommendations!
So, right now I will relish the fact that someday in the future I may be able to live the way healthy people live. I may be able to do things with my family without pain. I may be able to train and be a better martial artist. I may be able to be more productive in all areas of my life. I may not be scatter brained any more! I hope you will all still love me when some of the quirkiness I'm known for is gone!
My LLMD is very optimistic that I will recover at a fast pace. (fast to lyme standards is still months or years). I have responded beautifully to the amoxicillian I have been on. Now it's time for the big guns to be put on board! I can't wait to start loading on the heavy meds! I will get through the side affects and HERXING because of my desire to discover what HEALTHY feels like!
Tuesday, December 10, 2013
I May Not Be Happy, But I Still Have Peace
I've been feeling pretty down the past couple of days. It may be another way the lyme is manifesting itself as my symptoms slowly worsen. Or it may be that I'm just down because I have been stuck in my house and away from my life for three months. Either way, I'm pretty mopey.
I contemplated not blogging, but if I am sharing my experiences I wouldn't be honest if I only discussed things positively. I do feel sad sometimes, and it's ok that I feel sad. God created all of our emotions.
Sad or not, I still have hope. My hope is based on my belief that no matter what, God's will is perfect and all though things that happen to me cause sadness, I still have a peace that God will take care of me.
I have so much to lose. I feel like I'm dangling on a string of uncertainty. My hope isn't that God will prevent me from losing what I value, but instead my hope is that if I do lose what I'm holding on to God has something better planned. I don't mean bigger, I mean better. For me better is simply fulfilling God's purpose for my life.
Still, right now I feel down. I tried to go watch my daughter cheer at a basket ball game, but the pain from sitting on the bleachers in the cold gym made me nauseous. My poor mother-in-law watched the game alone as I spent the game trying not to pass out or throw up. I was with her in body but not in spirit. Getting out of the building was a challenge. I decided my mother-in-law and I are a dangerous combination. We are both at high risk of falling, and neither of us could help the other get around.
At the game I was reminded of what I don't have right now. I watched as parents socialized and cheered. I feel like I've been removed from life and am watching, as an outsider, everyone else go on living. I am stuck in this illness, being left behind as everyone else moves forward.
I also have fear. Here I am, so sick I can barely meet my most basic needs, and our government denies that my illness even exists. Laws are slowly changing but it isn't happening fast enough to help me right now. I have to pay out of pocket for my doctor appointments and needed treatment. When I feel over come with fear I meditate on how God has supplied my needs so far. Thanks to donations I have now been able to pay for my first two, most expensive donations. My bills are up to date as of November. And the generosity of friends and family helping to meet our basic needs is noted and appreciated. I promise, when I am well I will pay it forward.
I do plan on getting well. I just don't know how long it will take or how we will pay for it. I hate uncertainty. I know I am growing in my faith through this. I know God is working in this situation. I just wish I knew what the plan was. The uncertainty of whether or not I will be better before my disability runs out is driving me nuts. I want to plan and be a good steward of what I have but I don't know what I'm suppose to do.
Every morning, I have a quiet time with God. I pray that He will guide my steps for just today. I simply say, "God, help me to be able to focus on whatever task it is you want me to accomplish. Please give me wisdom for how to utilize my time. Let me know what it is you what me to do TODAY"
That's all I can do. If I need to sleep...I sleep. If I am blessed with a relief from my brain fog I try to get some work done. If my body is having a good day I do some light housework. If I am feeling motivated to blog, email, text, network....that's what I do.
So, I've laid my soul out there. Tomorrow I may feel happy and energetic. Who knows how I will feel from moment to moment. This is a crazy disease. I can't plan what I'm going to do in a couple of hours let alone plan for the next day.
The one thing I can, and will, do is to continue to educate everyone whom I have contact with that there are hundreds of thousands of people in our country just like me. We are all suffering while our government is ignoring us.
I contemplated not blogging, but if I am sharing my experiences I wouldn't be honest if I only discussed things positively. I do feel sad sometimes, and it's ok that I feel sad. God created all of our emotions.
Sad or not, I still have hope. My hope is based on my belief that no matter what, God's will is perfect and all though things that happen to me cause sadness, I still have a peace that God will take care of me.
I have so much to lose. I feel like I'm dangling on a string of uncertainty. My hope isn't that God will prevent me from losing what I value, but instead my hope is that if I do lose what I'm holding on to God has something better planned. I don't mean bigger, I mean better. For me better is simply fulfilling God's purpose for my life.
Still, right now I feel down. I tried to go watch my daughter cheer at a basket ball game, but the pain from sitting on the bleachers in the cold gym made me nauseous. My poor mother-in-law watched the game alone as I spent the game trying not to pass out or throw up. I was with her in body but not in spirit. Getting out of the building was a challenge. I decided my mother-in-law and I are a dangerous combination. We are both at high risk of falling, and neither of us could help the other get around.
At the game I was reminded of what I don't have right now. I watched as parents socialized and cheered. I feel like I've been removed from life and am watching, as an outsider, everyone else go on living. I am stuck in this illness, being left behind as everyone else moves forward.
I also have fear. Here I am, so sick I can barely meet my most basic needs, and our government denies that my illness even exists. Laws are slowly changing but it isn't happening fast enough to help me right now. I have to pay out of pocket for my doctor appointments and needed treatment. When I feel over come with fear I meditate on how God has supplied my needs so far. Thanks to donations I have now been able to pay for my first two, most expensive donations. My bills are up to date as of November. And the generosity of friends and family helping to meet our basic needs is noted and appreciated. I promise, when I am well I will pay it forward.
I do plan on getting well. I just don't know how long it will take or how we will pay for it. I hate uncertainty. I know I am growing in my faith through this. I know God is working in this situation. I just wish I knew what the plan was. The uncertainty of whether or not I will be better before my disability runs out is driving me nuts. I want to plan and be a good steward of what I have but I don't know what I'm suppose to do.
Every morning, I have a quiet time with God. I pray that He will guide my steps for just today. I simply say, "God, help me to be able to focus on whatever task it is you want me to accomplish. Please give me wisdom for how to utilize my time. Let me know what it is you what me to do TODAY"
That's all I can do. If I need to sleep...I sleep. If I am blessed with a relief from my brain fog I try to get some work done. If my body is having a good day I do some light housework. If I am feeling motivated to blog, email, text, network....that's what I do.
So, I've laid my soul out there. Tomorrow I may feel happy and energetic. Who knows how I will feel from moment to moment. This is a crazy disease. I can't plan what I'm going to do in a couple of hours let alone plan for the next day.
The one thing I can, and will, do is to continue to educate everyone whom I have contact with that there are hundreds of thousands of people in our country just like me. We are all suffering while our government is ignoring us.
Monday, December 9, 2013
a pollutant you may not have thought about
One of the top things Lyme patients spend time focusing on is detoxing. As you enter the Lyme world you are quick to learn the importance of ridding your body of unwanted substances. We stop eating gluten and sugar. We worry about mold and heavy metal toxins in our bodies. There are many reasons for this, but that isn't the focus of my blog today.
I am noticing that there is little discussion in the lyme world on EMF's and how over exposure can cause headaches, pain, increase the risk for cancer, and cause an abundance of free radicals.
Even before I knew I had lyme I learned that by protecting myself from EMF exposure I had a decrease in symptoms.
The National Council of Radiation Protection and Measurement declared that 2 mG is the maximum amount of EMFs that the human body can handle at any one exposure.
You probably think of this when it comes to microwave ovens that put out 200mg's, but did you know that the blender you use to make those healthy smoothies puts out 220mg's? Your cell phone that you probably spend a lot of time on staying connected to the world puts out 100mg's. Your computer puts out 20 and your tablet puts out 10, still well above the recommended 2mgs.
"When exposed to man-made frequencies, our body absorbs and stores such energy fields. These are unnatural and chaotic electromagnetic fields such as microwaves. It can weaken our immune system and ultimately lead to illness.
http://www.caribarena.com/antigua/mobile/emf-exposure/97301-emf-effects-on-your-body-cells.html#ixzz2TZVmvQJh" ~JUUVA fact sheet
Think about it, our bodies are made up mostly of water, we are a perfect conductor for electricity. If you want to go further, to the molecular level, we are made up of atoms, so not only do we conduct electricity, we are basically an electrically charged being!
We want to keep our body in balance. The electrical appliances we surround ourselves with put out positive ions. Positive ions are BAD, they're free radicals and they harm our bodies.
Here's a list of the harm they can cause:
- constrict blood vessels
- increase blood pressure
- increase blood acidity
- weaken bones
- suppress urination
- decrease nitrogen in urine
- make breathing more difficult
- increase pulse rate
- impair heart function
- prolong physical recovery
- tense and strain the nervous system
- suppress and delay growth
Are you ready to go live in the middle of the woods yet? It might be a good idea, the woods will have an abundance of negative ions. Negative ions are GOOD for you! You can find them in nature, at the ocean, after a thunderstorm, next to a waterfall......in your home you can find negative ions in your hot shower! Negative ions help neutralize positive ions.
Negative ions:
- Dilate blood vessels
- stabilize blood pressure
- increase blood alkalinity
- strengthen bones
- promote urination
- increase nitrogen in urine
- stabilize respiration
- decrease pulse rate
- enhance heart function
- speed physical recovery
- calm and relax nerves
- promote healthy growth
Don't worry, you don't have to move to the wilderness. I have found a way to protect myself and my family.
All of our dangerous devices have a cation shield. So when I stand in front of my blender, making a super healthy smoothie, I'm not worried about the EMF's being produced. My father-in-law put one on his cell phone, which he carries in his pants pocket, and discovered relief from leg pain that he had been suffering from. I no longer get headaches when I'm using my laptop.
I also wear an anion emitter. The one I use is from a company called JUUVA. JUUVA's emitter is the strongest on the market, putting out 2,000 negative ions per linear inch, a total of 10,000 negative ions. Juuva's emitter is also the best priced on the market. Now, you can get emitters cheap on amazon, I tried one, they don't work nearly as well. My symptoms are severe, in fact on a bad day I use two or three emitters. I no longer take pain meds, and only take a muscle relaxer occasionally. Not only does this dramatically decrease my headaches, and my muscle pain, but it provides me energy and an over all sense of well being. Don't get me wrong, I still have bad days where I literally feel like I'm dying, but I don't think my bad days are as bad as some of the days I see others in the lyme community talking about. Honestly, most days I feel relatively good, my complaint is that my body doesn't work. Nothing is more frustrating then feeling like doing things, but not being able to stand on my two feet long enough to accomplish anything. Negative Ions aren't a cure for lyme, but they sure do help!
Yes, I do distribute JUUVA products. So, don't take my word for it, listen to Myrtle. Myrtle is a sweet lady who is 104 years old and feels she has been left on this earth to help people. Take a minute to listen to this sweet lady from New Hampshire.
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