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
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
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