I was looking for a notebook this morning. I found one that had barely been used under a pile of books . When I took a look at the two pages that had been used I discovered it was journal entries I had made seven years ago. Now being me, I only made two entries, but those two entries were enough for me to see that I knew all my symptoms were related and I knew something was seriously wrong.
This was around the time I stopped going to the doctor about these chronic symptoms. I was in my early 30's and had spent the past twelve years seeking help from the medical community. The only answer they gave me was fybromyalgia. The problem was, even the doctors couldn't agree on that diagnosis. This was when they were looking for a certain number of pressure points that caused pain. I didn't really have any. I soon rejected this diagnosis, because it appeared to me that the doctors were just blaming all my ailments on it when they couldn't figure out what is wrong. Along with fybromyalgia, I had doctors tell me I was depressed and it was manifesting itself physically. Honestly, I began to feel like a hypochondriac, the doctors often looked at me like I was nuts. This probably was in my head, but I truly felt some doctors thought I was faking it. Of course I would think this, I was beginning to feel as if maybe I was over reacting to what everyone else easily copes with. Even now, I have a hard time grasping the concept that there are people out there not in pain. I don't know what that is like, and before I knew I had lyme I felt like such a wimp because pain interfered with my life in a drastic way.
Here is the journal entry,
"April 10th 2007
I have decided to keep a journal of my health to try to find patterns that may help me find the cause of my symptoms. Daily issues include:
fatigue,
knee pain,
pain in knuckles and shoulders and elbows,
muscle ridgedness (muscles get tight and I use heat to relax them),
foggy thinking abilities-difficulty in remembering things-slow to answer questions (this really annoys my son)- hard time focusing
Headaches aren't as bad as they use to be now that I run the karate school. I am better able to manage pain and take a nap when I need it. I tried to go back to work in the school in January. I missed more days then I was there. I have just given up working a regular job because I am not reliable as an employee. Running the business helps in some ways but my stress level is higher and my husband has to do things for me more often then not, so he misses work himself.
Quick recap of last few days
Sat. April 7th 2007
Severe pain in right back had to sit and stop teaching class. Pain continued on and off so on Sunday April 8th, 2007 I went to ER thinking I might have a UTI. (I also had frequent urination, which isn't abnormal for me). Left ER with an answer that it was pain due to fybromyalgia. Went to walk-in-care on Monday, April 9th and left with a diagnosis of nerve pain. I've been given ________? and prednisone.
Tuesday, April 10, 2007 the back pain is gone this morning. My pain is back to joint pain"
WOW, any lyme literate doctor could have diagnosed me on the spot. The symptoms, and the fact that every day I had different symptoms are a red flag for lyme. I was tested for lyme a second time during this search for an answer. I was told I didn't have it, so I accepted that answer not knowing the fallibility of testing. Seven years ago I could have easily been diagnosed, instead, seven years ago I gave up and decided to just tough it out. Look where that got me.
Thursday, March 13, 2014
Friday, February 28, 2014
It's a Marathon not a Sprint ~ Living and Loving Life with Lyme
Wow, I had some really rough days! At first I thought my medicine wasn't working because I wasn't experiencing a change in symptoms, good or bad.
And then it hit...........................................
I quickly learned first hand what it meant to Herx. I was having focal seizures multiple times a day. I was unable to leave the house. The simple act of riding in the car was torturous. I would pull a thick hat down over my eyes because sunglasses weren't enough to block out the sun which hurt my eyes in a way I had never before experienced. Even with my eyes covered, the motion of the vehicle was something I couldn't tolerate. I have never experienced motion sickness to this extent, and I hope I never feel that way again. Sound and movement were also difficult to handle. I couldn't block noise out, and everything felt louder then I'm sure it was. There were days I hid in my room just so I could control the environment for light and sound. I couldn't read. I couldn't watch tv. My only outlet was brief excursions to facebook from my phone.
The most severe symptom was my startle reflex being out of control. Sometimes just one of my daughters walking down the hall into my line of vision would cause me to scream as if they had jumped out of the dark to scare me. I think they were often just as startled by my screaming as I was by their sudden appearance. The slightest unexpected noise would trigger a seizure. I love my family, we can make a joke out of anything. My daughter would burp and I would respond with a focal seizure. During these types of seizures you are aware of what is going on, you just don't have control over what your body is doing. With me, I make a yelling noise and my arms fling up over my head. Only in my house would my children start laughing at this, and of course, as I'm seizing, I'm snickering as well. I'm not sure if my dog was worried or thought I was playing. He would jump in my lap and dig at my hand trying to get me to respond. Sometimes my seizures were so bad that afterwards I would be unable to speak or move. I would just stare blankly at the wall wondering when I would feel normal again.
This lasted for about a month, then something wonderful happened. I realized I was beginning to feel better. I would have a day, or a couple of days where I felt like doing things. Granted, I was physically unable to do anything, but just having the desire to be productive was a huge improvement. Gradually, my ability to watch tv returned. I spent a week watching netflix all day. Then, I found I could get on my laptop for brief periods of time. I began this years book keeping. I placed ATA orders. I worked on class plans and promotional projects. Last week I decided to attempt to read a book. I haven't been able to do this since August. I have read six books this past week.
All of this is great, right?! Yes and no, the difficult part for me now is that I am impatient to do more. All of my good days are equally matched by bad days. No, not as bad as when I was herxing, but still bad enough to make me not feel like getting out of bed. Still bad enough that I was to tired to sit up straight, let alone do anything productive. Mornings are the worse. Thankfully my afternoons and evenings are usually an improvement. My husband is currently in the difficult part of treatment and hasn't felt able to teach taekwondo. I have been able to manage to get downstairs to our studio and teach a class or two from a chair. Sometimes I had to rest all day just to have the energy to do that, but that's ok. The brief hour I'm teaching is an hour when I feel like I am my old self. I hang on to the memory of that hour to help me get through the days that I can't get out of bed.
I'm afraid I am in the long and difficult part of this journey. The part where I have to remember I will get well. I am alert enough to want to function in life like I use to. I can envision myself getting up and folding laundry. I can envision myself running errands downtown. I can envision myself helping out at my daughters school. Unfortunately, when I try to make my body do what my mind is envisioning it doing, I am quickly reminded that I'm home on disability for a reason. Sometimes the joy of being able to walk further distances then I was able to a few weeks ago isn't enough for me. I want more.
So here's the truth. I'm lonely. I'm bored. I'm frustrated with things from feeling trapped in my home to knowing how much weight I'm gaining. That could be a whole blog in itself! Geesh, when I do get an opportunity to leave the house, none of my clothes fit. Facebook use to help me feel like I was part of the world, but lately it is just a painful reminder that everyone's lives are going on while I'm stuck in this rut.
The worst part of this illness is there is no time line. I can make goals, but I have little control over whether or not I will meet those goals. I'd like to be out and about by summer. I'd like to return to work next fall. Realistically, I may have to go another whole year of this before I am able to even begin to do the things I want to do. I am hopeful, I need hope or I'd go crazy. The truth is I AM improving. I am improving surprisingly fast. As long as I don't plateau functioning by summer may actually happen. There is just no way to know.
So, I hang on to small milestones.
It was a joy on Thursday when I had an appointment with my primary care physician. She hadn't seen me since I started treatment. I was able to walk into the office, sit up straight in a chair, and have a conversation without uncontrolled muscle movements. She was ecstatic! For her, not seeing me for almost three months, the change was HUGE! I realized how far I had come so far in my recovery. It helped me not to be down on myself for having a week where I couldn't do housework because I needed to save my energy for teaching. Three months ago I couldn't even get down my stairs.
So, it's a marathon, not a sprint and I have the endurance needed to win this race.
Tuesday, February 11, 2014
Lyme Rage~Anger over the Treatment of Lyme Patients
Sometimes when you have lyme you are prone to sudden rages that seem to have no cause. This phenomena is called "Lyme Rage". Some of you have experienced this with yourself or someone you love. The title of my blog isn't about this definition, instead I used this common term in the Lyme Community to set the stage for what I really am feeling led to write about.
I am enraged at the treatment lyme patients receive from the people who are suppose to care for them the most. I am enraged at the stubborn and arrogant attitudes from many in the medical profession, who like blind mice, follow the IDSA with no independent thought of their own, refusing to do the research and ask the questions with an open mind, willing to HEAR the answers. Then and only then can someone make an informed choice as to what side of the fence to stand on.
You may say to me, "I'm sure doctors do that". Yeah, I thought that too, that's why I have been sick for so long. I blindly, unquestionably, trusted everything my doctors told me. Even last summer, when friends started trying to point me in the direction of lyme, I simply accepted my doctor's answers and didn't research it myself. It wasn't until I was unable to walk and having seizures, that I became desperate enough to look at the possibility of lyme. Especially when I was sent home from the hospital told, "we don't know what is wrong, sometimes we can't figure it out", and when the neurologist said, "There is nothing wrong with you".
OH REALLY?
After having MONTHS of sitting around my house, I have done my homework. I am SHOCKED at how uneducated our medical community is on this topic. They strongly state chronic lyme doesn't exist, it's easy to test and easy to treat. They say this, and then give out information that is totally wrong, even wrong according to the CDC. Multiple doctors told me the ELISA test was accurate. WRONG! The CDC says that lyme is a clinical diagnosis. Positive tests are only needed for reporting to gather statistical information. They are not intended for diagnosis. Despite the inaccurate ELISA tests, doctors won't look further into a possible lyme diagnosis if that test comes back negative. It doesn't matter what your symptoms are, it doesn't matter if you have ruled out other diagnoses through testing, negative ELISA means no lyme.
No doctor ever thought to give me the Western Blot. They don't give the Western Blot test unless the ELISA comes back positive. The western blot gives more information for the doctor to use to help diagnose lyme. It still isn't accurate, but it gives more specific information. I'm lucky, when I finally got my Western Blot done, it came back glaringly positive. I already had been given the diagnosis of lyme based on clinical observation, but now that I have the positive Western Blot, I feel I can be a huge advocate when discussing the existence of chronic lyme, and the benefits of long term antibiotic treatment. NO ONE, can dispute I have lyme. I have the VERY POSITIVE test, I have more then enough clinical symptoms, and I have had enough testing to rule out everything else.
So yeah, I'm angry.
As many of you know, WABI featured my husband and I in a story about lyme. Since then I have experienced the negative back lash that many "lymies" talk about, but I had yet to go through myself.
I'm curious how anyone, has the right, or knowledge, to tell someone who's ill with lyme, that it isn't real, or that it's all in their heads. I am shocked and appalled at the behavior of friends and family of lyme patients, who discredit or ignore their supposed loved one. Many lyme patients handle this by not telling anyone what their diagnosis is, and by hiding their symptoms. Not, me, I have a strong voice, and I will use it! The more you push against me the more I will push back when it comes to this particular topic.
Anger isn't always bad. It's ok to be angry over actions of injustice. It's what you do with your anger that determines if it is a positive or negative element in your life.
So, I am going to finish this blog, by refuting all of you who have said I don't have lyme, there is nothing wrong with me, it's all in my head, I've been misdiagnosed, I'm grasping at straws............
As I stated above, there is no refuting my diagnosis, even the CDC acknowledges it. I'm not going to tackle that argument here. Be advised, you DON'T need a positive lyme test to be diagnosed with lyme. I was diagnosed based on symptoms well before my blood work came back. Many people test false negative. I don't want to discuss false positives. Any discussion of that and I simply will point you to the CDC's diagnostic criteria. No argument there.
I am going to discuss long term antibiotic treatment.
Where is the common sense in stopping treatment when the patient is responding but not completely well yet? How does that make sense?
My insurance only paid for one month of my most needed antibiotic. That is what the IDSA guidelines suggest, so the insurance can justify refusing payment. Here's the dig, if one month is all that's needed, why am I, three months into treatment, seeing significant improvement? I'm, once again, lucky. (plus I have one of the best llmd's on the east coast). If I had stopped my medicine after one month, I'd still be bed ridden, I'd still be having seizures, it's not an exaggeration to state that my life was at risk. So,I've been paying for my meds out of pocket, I'm more alert and awake, I'm up and around doing light housework, and best of all, I'M CURRENTLY NOT USING MY WHEELCHAIR!
I'm not completely better, of course. I still fatigue easily, I have trouble out in public due to sensory overload, and I still have joint and muscle pain. So, do you think I should stop treatment or should I keep spending my own money on meds to see if I continue to improve?! Mainstream doctors would STILL tell me, despite the evidence, that I've been on antibiotics to long, or that my recovery is psychosomatic. Use your imagination as to what my response to that is!
So, here is what I have to say to those of you who have ignored or discredited someone who has lyme, "SHAME ON YOU"! This is slowly become a heated political issue, and in twenty years, when this is resolved, how will you feel when you look back and remember how you treated or negatively talked about someone who has lyme. I only hope that you never have to experience this horrible illness yourself. Unfortunately, even the CDC statistics show that lyme is a growing epidemic, worse then any other vector born illness. This means that you will, one day, experience this disease up close and personal whether you want to acknowledge it now or not.
Since when do people blindly accept what our government says? We, as citizens, have an obligation to be diligent, and to keep our representatives in check. We voted them in, we can vote them out. They are in government to do the will of the people. It is irresponsible and lazy to blindly follow whatever our government says.
Lastly, it shouldn't matter what the diagnosis is, you should be supporting those you know who are ill no matter what the cause. All you have to do is say, "I support YOU, I just can't support the diagnosis." Once this statement is made, you should still BE THERE for your friend or family member. Ignoring them is a horrible thing to do. Don't think they don't notice, they do. I will tell you I am very aware of the friends who have ignored me and my illness. It doesn't matter if you agree with my diagnosis or not, I still was unable to walk, I was still having seizures, I am still unable to work or participate in life. The only reason to ignore me would be if you thought I was faking it. If that's what you think then you don't know me at all. Bottom line, it doesn't matter what the illness is, if your loved one is suffering then you should be there for them. End of Story.
If you are interested in where many of our representative are on this debate, read this petition and the information in it. If you choose not to read it, then you are choosing ignorance.
http://www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf?share_id=ByifDHrMlm&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition
I am enraged at the treatment lyme patients receive from the people who are suppose to care for them the most. I am enraged at the stubborn and arrogant attitudes from many in the medical profession, who like blind mice, follow the IDSA with no independent thought of their own, refusing to do the research and ask the questions with an open mind, willing to HEAR the answers. Then and only then can someone make an informed choice as to what side of the fence to stand on.
You may say to me, "I'm sure doctors do that". Yeah, I thought that too, that's why I have been sick for so long. I blindly, unquestionably, trusted everything my doctors told me. Even last summer, when friends started trying to point me in the direction of lyme, I simply accepted my doctor's answers and didn't research it myself. It wasn't until I was unable to walk and having seizures, that I became desperate enough to look at the possibility of lyme. Especially when I was sent home from the hospital told, "we don't know what is wrong, sometimes we can't figure it out", and when the neurologist said, "There is nothing wrong with you".
OH REALLY?
After having MONTHS of sitting around my house, I have done my homework. I am SHOCKED at how uneducated our medical community is on this topic. They strongly state chronic lyme doesn't exist, it's easy to test and easy to treat. They say this, and then give out information that is totally wrong, even wrong according to the CDC. Multiple doctors told me the ELISA test was accurate. WRONG! The CDC says that lyme is a clinical diagnosis. Positive tests are only needed for reporting to gather statistical information. They are not intended for diagnosis. Despite the inaccurate ELISA tests, doctors won't look further into a possible lyme diagnosis if that test comes back negative. It doesn't matter what your symptoms are, it doesn't matter if you have ruled out other diagnoses through testing, negative ELISA means no lyme.
No doctor ever thought to give me the Western Blot. They don't give the Western Blot test unless the ELISA comes back positive. The western blot gives more information for the doctor to use to help diagnose lyme. It still isn't accurate, but it gives more specific information. I'm lucky, when I finally got my Western Blot done, it came back glaringly positive. I already had been given the diagnosis of lyme based on clinical observation, but now that I have the positive Western Blot, I feel I can be a huge advocate when discussing the existence of chronic lyme, and the benefits of long term antibiotic treatment. NO ONE, can dispute I have lyme. I have the VERY POSITIVE test, I have more then enough clinical symptoms, and I have had enough testing to rule out everything else.
So yeah, I'm angry.
As many of you know, WABI featured my husband and I in a story about lyme. Since then I have experienced the negative back lash that many "lymies" talk about, but I had yet to go through myself.
I'm curious how anyone, has the right, or knowledge, to tell someone who's ill with lyme, that it isn't real, or that it's all in their heads. I am shocked and appalled at the behavior of friends and family of lyme patients, who discredit or ignore their supposed loved one. Many lyme patients handle this by not telling anyone what their diagnosis is, and by hiding their symptoms. Not, me, I have a strong voice, and I will use it! The more you push against me the more I will push back when it comes to this particular topic.
Anger isn't always bad. It's ok to be angry over actions of injustice. It's what you do with your anger that determines if it is a positive or negative element in your life.
So, I am going to finish this blog, by refuting all of you who have said I don't have lyme, there is nothing wrong with me, it's all in my head, I've been misdiagnosed, I'm grasping at straws............
As I stated above, there is no refuting my diagnosis, even the CDC acknowledges it. I'm not going to tackle that argument here. Be advised, you DON'T need a positive lyme test to be diagnosed with lyme. I was diagnosed based on symptoms well before my blood work came back. Many people test false negative. I don't want to discuss false positives. Any discussion of that and I simply will point you to the CDC's diagnostic criteria. No argument there.
I am going to discuss long term antibiotic treatment.
Where is the common sense in stopping treatment when the patient is responding but not completely well yet? How does that make sense?
My insurance only paid for one month of my most needed antibiotic. That is what the IDSA guidelines suggest, so the insurance can justify refusing payment. Here's the dig, if one month is all that's needed, why am I, three months into treatment, seeing significant improvement? I'm, once again, lucky. (plus I have one of the best llmd's on the east coast). If I had stopped my medicine after one month, I'd still be bed ridden, I'd still be having seizures, it's not an exaggeration to state that my life was at risk. So,I've been paying for my meds out of pocket, I'm more alert and awake, I'm up and around doing light housework, and best of all, I'M CURRENTLY NOT USING MY WHEELCHAIR!
I'm not completely better, of course. I still fatigue easily, I have trouble out in public due to sensory overload, and I still have joint and muscle pain. So, do you think I should stop treatment or should I keep spending my own money on meds to see if I continue to improve?! Mainstream doctors would STILL tell me, despite the evidence, that I've been on antibiotics to long, or that my recovery is psychosomatic. Use your imagination as to what my response to that is!
So, here is what I have to say to those of you who have ignored or discredited someone who has lyme, "SHAME ON YOU"! This is slowly become a heated political issue, and in twenty years, when this is resolved, how will you feel when you look back and remember how you treated or negatively talked about someone who has lyme. I only hope that you never have to experience this horrible illness yourself. Unfortunately, even the CDC statistics show that lyme is a growing epidemic, worse then any other vector born illness. This means that you will, one day, experience this disease up close and personal whether you want to acknowledge it now or not.
Since when do people blindly accept what our government says? We, as citizens, have an obligation to be diligent, and to keep our representatives in check. We voted them in, we can vote them out. They are in government to do the will of the people. It is irresponsible and lazy to blindly follow whatever our government says.
Lastly, it shouldn't matter what the diagnosis is, you should be supporting those you know who are ill no matter what the cause. All you have to do is say, "I support YOU, I just can't support the diagnosis." Once this statement is made, you should still BE THERE for your friend or family member. Ignoring them is a horrible thing to do. Don't think they don't notice, they do. I will tell you I am very aware of the friends who have ignored me and my illness. It doesn't matter if you agree with my diagnosis or not, I still was unable to walk, I was still having seizures, I am still unable to work or participate in life. The only reason to ignore me would be if you thought I was faking it. If that's what you think then you don't know me at all. Bottom line, it doesn't matter what the illness is, if your loved one is suffering then you should be there for them. End of Story.
If you are interested in where many of our representative are on this debate, read this petition and the information in it. If you choose not to read it, then you are choosing ignorance.
http://www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf?share_id=ByifDHrMlm&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition
Sunday, January 26, 2014
Support System for Lymies
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
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
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!
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.
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.
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