**Disclaimer** By reading this you are agreeing not to take anything said on this blog as medical advice. Please see a medical professional for guidance and/or treatment. Thank you.
What if you had something that was killing you?
What if that something was an epidemic?
What if that epidemic was hidden?
I have it, and it is. Lyme disease.
What is lyme disease?
Lyme disease is a very serious disease in which if it turns chronic, does not have a cure. It is a huge compilation of serious, often debilitating symptoms.
How do you get lyme disease?
It is most often transmitted through a tick bite, but can also be transmitted through deer flies. Pets can bring ticks into the house. There are cases that show lyme disease is also an std. These bacteria go into your blood stream when a tick bites you. From there, they can move through your body into any organ or system.
What can I do to avoid getting lyme disease?
Don't go in the woods or high grass areas. Even so you can still get it, anywhere. It is suggested if you are in any woodsy area to cover up your skin as much as possible. Tuck pants into socks, wear long sleeves. When you get in, remove all clothing and wash it immediately. Check over your entire body to see if you have any ticks on you. They can be extremely small and hard to notice. If you find any, remove them completely with a tweezers. Do not leave the head in. Save it and you may be able to have it tested for lyme disease and other co-infections. See an LLMD immediately if you find a tick on you.
Is it "just" lyme disease or does the tick cause something else too?
Often it is not just lyme disease. There are many co-infections that can also be extremely serious and involve their own treatment plan. Long term, lyme disease can cause a large number of other complications.
Will you know if you have lyme disease?
The classic key symptom of lyme disease is a bullseye rash anywhere on your body, small or large, especially if there is a tick still attached. Other key symptoms are flu like symptoms of fatigue, muscle aches and pains, stiffness, headache, chills and fever. However, you can get bit by a tick and not know it; you can have lyme disease and not have these classic symptoms.
You can also have, especially if lyme turns chronic, many other symptoms and more serious ones especially neurological... memory issues, trouble talking, vision problems, trouble swallowing, facial paralysis, sensory issues, ringing in the ears, headaches, temperature sensitivity, absolutely extreme fatigue, tiredness, horrible pain, muscle and joint pain and stiffness, mood swings/fits of rage, becoming very emotional, nausea, balance trouble, seizures, heart trouble, etc. Lyme can cause a number of other diseases, or those diseases may be lyme misdiagnosed. Lyme can kill you, though the number one reason people die from lyme is from suicide. Lyme disease is that bad that people feel they have to do that. Lyme disease is unable to be put into words. It is living an absolute nightmare while trying to put on a smile to the world carrying on around you.
In addition to all that, you can have lyme and not know it. It can perhaps be in your system but not brought out unless something serious happens such as pneumonia. You can have it and possibly transmit it to others and not know it. It could show up in them and not you even if they got it from you. It can be transmitted from mother to child.
Can I get lyme disease more than once?
Yes. You can get it again and again and again. Or you can get it and it may never go away.
Is there a test for lyme disease?
The regular testing at a regular doctor for lyme disease is highly inaccurate. Furthermore, testing will most likely not show positive until at least weeks to months after being infected. There is special testing through a special lab which is much more accurate but often not covered by insurance.
Who treats lyme disease?
#1 thing to know- if you go to an infectious disease doctor, which is who a primary care doctor will refer you to if you have a tick bite, the infectious disease doctor will most likely say you do not have lyme due to the huge controversy behind it. If you want lyme treated properly, you will probably have to see an LLMD- lyme literate doctor. They are hard to find again because of the controversy. They kind of hide out and the best way to find one is a recommendation through another lyme patient or a lyme literate organization. More importantly, they most likely will not accept insurance because of the controversy which leads to hundreds and thousands of dollars out of pocket for consultation and treatment.
What is the controvery?
Bottom line is that the people who run the rules of everything lyme disease have a conflict of interest with receiving money from different sources. Also when they were laying out the lyme guidelines, when it came to discuss chronic lyme, it never got discussed. So they based their information off what they already had. It is highly inaccurate. These people run all the rules. Insurance doesn't want to pay. Thus regular doctors cannot treat chronic lyme disease without risking losing their license. Doctors who do treat can't accept insurance because it goes against the guidelines of treatment. It is all a bunch of politics.
There is speculation that lyme disease was actually created as a biochemical weapon long ago. There is also speculation that there is a cure but it is kept highly under wraps. There is speculation that whether there is or isn't a cure, a cure will never be available to the public because of how much money lyme makes, "lyme" meaning a bunch of other illnesses/diseases which are actually lyme or caused by lyme but classified as multiple other things depending on symptoms such as MS, POTS, alzheimers, etc.
What is the treatment?
It will vary from person to person. The cdc claims you can be treated and cured with about 2 weeks of antibiotics. LLMD's and those of us who have lyme disease know that is not true for chronic lyme. Chronic lyme is treated for months if not years. It involves multiple medications, sometimes cycling different medications, pulsing different medications, supplements and therapies. Most likely it will involve a medication to bust open the cysts that the lyme hide in, a supplement to dissolve the biofilms, a medication or more than one that then attacks the lyme to kill it, a medication or more than one to attack any co-infections that come along with lyme, a medication or supplement to fight the yeast overgrowth that often comes on with taking antibiotics, probiotics to build up the good bacteria after the antibiotics kill off all bacteria, multiple supplements and treatments to detox the body from the outpouring of the lyme dying and multiple supplements to support the body going through this process. These medications can be orally or through IV. Often the day of a lyme patient revolves around a very hectic and strict medication schedule- some with food, some without, some you can't lay down afterwards, some taken away from other supplements.
Why doesn't treatment cure lyme?
The lyme disease hide in cysts inside your body. There they are hard to attack or find. Often by the time lyme is diagnosed, patients have gone years or even decades of misdiagnoses and improper treatment. Over that time the lyme takes over the body causing more and more symptoms and different stages of lyme. The lyme can get into any organ or system in your body. They can attack your heart, your brain, your eyes, your nerves and muscles, anything.
What else can you do to help yourself if you have lyme?
Eat healthy! By healthy I don't mean cut out fats and watch your calories. Society misunderstands healthy. Healthy eating means clean eating. This means cutting out anything processed- most everything that comes in a box, cutting out GMO's which isn't exactly food to begin with it's genetically modified who knows what given the word "food", cutting out sugar, eating organically. Many lyme patients find that also cutting out gluten or grains all together and dairy sometimes including eggs is a big help also.
So why doesn't everyone with lyme just eat healthy?
We try our best to. One problem is a lot of people with lyme get GI problems. That causes nausea and food aversions often to what is healthy, and cravings often to what is very unhealthy. That can be the lyme doing that to you because the bad stuff feeds it. Sometimes we have no appetite and can't eat at all and other times we throw up what we have eaten. Even when our GI system seems to be working fairly normal, often we don't have the energy to prepare anything to eat and we eat out of convenience. And unfortunately the problem still exists that eating organic can sometimes cost more and when we are unable to work, have to pay to see doctors and get treatments out of pockets, everything starts to suffer because of it. But if you are going to start anywhere, lyme or not, start by eating healthy.
If LLMD's aren't covered by insurance, the cost is very high, and there is no cure, why bother?
Treatment helps, it just doesn't cure. What that means is if we didn't get treatment we may be crippled, stuck in bed 100% of the time, progressed so far that we can't walk or talk, or killed when it attacks the heart or brain and makes us suicidal. Those with lyme are often willing to pay any price to improve their quality of life- which may just mean- just being able to get through the day.
Lyme disease is just as serious if not more serious than cancer. The reason some people may be offended by that statement may unfortunately be due to ignorance, lack of proper education and knowledge about a deadly horrible disease, thanks to those that run the medical industry. Lyme disease needs awareness and attention more than anything else I've encountered so far. Lyme disease may in fact be the cause of some of the other problems I've encountered so far, and may cause more in the future. Lyme disease is chronic pain and suffering inside a body that looks "fine". For more detailed information to better understand lyme disease and the controvery please watch this video here Thank you so much for reading!
Thursday, November 20, 2014
Tuesday, November 18, 2014
It's so hard. And I need you.
I get annoyed when people act as if I'm going to get better. That's the thing about chronic illness, it's chronic, it's kind of sort of forever.
Yes there is prayer and hope for remission in my future, but it is not guaranteed and outside the miracle by God, very unlikely. Even if one thing goes into remission, it doesn't mean they all will. Many of them can't go into remission, they are just conditions I have. Life long.
I don't just have Myasthenia Gravis. I don't just have Lyme Disease. One diagnosis does not replace another. I have (in order of when I got diagnosed including serious and not as serious):
bad allergies/sensitivities to foods, fumes, environment etc.
Scoliosis/another back problem
GERD
Gastritis
Chronic Epstein Barr Virus
Yes there is prayer and hope for remission in my future, but it is not guaranteed and outside the miracle by God, very unlikely. Even if one thing goes into remission, it doesn't mean they all will. Many of them can't go into remission, they are just conditions I have. Life long.
I don't just have Myasthenia Gravis. I don't just have Lyme Disease. One diagnosis does not replace another. I have (in order of when I got diagnosed including serious and not as serious):
bad allergies/sensitivities to foods, fumes, environment etc.
Scoliosis/another back problem
GERD
Gastritis
Chronic Epstein Barr Virus
Tendonitis
Myasthenia Gravis
blood clot disorder
POTS/Dysautonomia
Candida
Adrenal Fatigue
Mast Cell problem
immune deficiency
Lyme Disease
Bartonella
There is a chance that in treating my Lyme Disease, many others will improve. Improve, not go away. Improve could mean I could just do a little more. It doesn't mean I won't still struggle every day, still be in pain, still be extremely fatigued, still be weak, etc. Again there is no guarantee and getting lyme under control is something most people attempt to do for many many years without success.
I will always have to be careful not to be around anyone sick because there is nothing I can do about my immune deficiency. That means my body doesn't fight off illness like normal. I get sick much easier and "little things" like a cold can easily turn into big things like pneumonia, which has happened in the past. Pneumonia can flare my MG and land me in the hospital on a vent. I will always have to try to avoid dust, cats, ragweed, smoke, and so many common foods such as gluten, yeast, sugar, dairy, anything processed as much as possible because they make me worse. Again the breathing thing. I will always have to walk every 2 hours and take things to thin my blood due to my blood clot disorder (high risk of blood clots including pulmonary embolism which I've had previously). I will probably always need to drink liters upon liters of water a day, always have healthy food available to me for blood pressure and blood sugar drops, and take lots of supplements in addition to prescription medications.
This is the life I've been given. Do I like it? In regards to this health part- no, I don't. I really really don't. I pray to God every day to remove these things and make me better. But the reality of it is this is what I am dealing with in the now. And I need to live how I can and do what I can when I can. It's not what you are used to or want but it is what it is.
By always acting as if I'm going to "get better" it makes me feel like my life is on hold. It makes me feel like I'm useless for this time being. It makes me feel like I'm not valued for who I am in the present. It makes me sad that this is what I have to live with and I can't be healthy, able bodied, working and enjoying life more fully. It makes it harder.
I do my best to be positive, but sometimes there are days I just break. I cry. I feel useless. I feel unloved. I feel so alone. I am in pain, weak, miserable. And those are the days I need you the most. Today is one of those days.
All you need to do is be there, listen, care, offer to help however you can- cooking healthy meals, driving me where I need to go, texting to say hi or you are thinking about me, sending a card just to make me smile. It all helps, tremendously.
Thank you for your support and encouragement. One day I hope to pay it back, but until then I'll try to pay it forward when and how I can. God bless.
Friday, November 14, 2014
Confusion of Chronic Illness
What does it mean to be chronically ill?
Those who are healthy think of being sick as something like this-
- you "catch" something
- you feel lousy
- you take medicine
- you get better.
Chronic illness is very different. You don't exactly "catch" something, it just sort of happens. You feel lousy, beyond lousy. You go from doctor to doctor to doctor trying to figure out what is wrong with you and why you aren't getting better. You take medicine, and more medicine, and vitamins, and supplements, and treatments, you stop medicine, you get surgery. You add another diagnosis. You repeat this cycle. Over and over. You never fully get better.
There is a lot of confusion with this. It's hard for those of you who are healthy to relate when it is something you have not experienced. But even if you can't relate, we need you to understand.
We don't want to be sick. We did not choose this. We can not reverse it. You cannot see it, but we can feel it, all the time. Some days are worse, some days are better, but never "better" like how you understand that word.
For example, Tuesday night I had an extremely rough night. You might have seen me and thought I should be in the hospital. Wednesday I rested, all day, literally. Thursday I had energy and was go go go all day getting things done around the house. I over did it. By the end of the day my eyelids were droopy, my vision was unfocused, my voice felt strained to talk, my arms/shoulders/chest was struggling to be typing on the computer. Today I'm in between, mainly my throat is affected with weak swallowing and talking. I'm wearing my neck brace. My vision is still unfocused. I have to take it easy with my upper body. I had stiffness and pain in my joints. I did a little and rested a lot. I have no idea what tomorrow will bring. Perhaps I'll get a surge of energy and get out to a few stores. Or perhaps I'll barely be able to sit up in bed and need my mom to be more of a caregiver than a mom all day.
We don't know what it will be day to day or even hour to hour. We take advantage of the time we have feeling half decent because we don't know when it will end. So yes, you may see us out and about, wanting to meet for lunch, making phone calls, doing housework, traveling, etc. But at any given moment that changes and we can decline slowly or rapidly. That is when we have no choice but to cancel plans even if we really wanted to be there, when we can't talk on the phone because our voice is too weak, when we look depressed because we literally don't have the strength or energy to expel, when we wish there was someone there to help us but sometimes we don't want to ask and people think we are perfectly fine.
Chronic illness doesn't end, it only changes, sometimes better, sometimes worse, always unknown.
So let's just show one another some support, some grace, some encouragement and some love- healthy or chronically ill. God bless.
Those who are healthy think of being sick as something like this-
- you "catch" something
- you feel lousy
- you take medicine
- you get better.
Chronic illness is very different. You don't exactly "catch" something, it just sort of happens. You feel lousy, beyond lousy. You go from doctor to doctor to doctor trying to figure out what is wrong with you and why you aren't getting better. You take medicine, and more medicine, and vitamins, and supplements, and treatments, you stop medicine, you get surgery. You add another diagnosis. You repeat this cycle. Over and over. You never fully get better.
There is a lot of confusion with this. It's hard for those of you who are healthy to relate when it is something you have not experienced. But even if you can't relate, we need you to understand.
We don't want to be sick. We did not choose this. We can not reverse it. You cannot see it, but we can feel it, all the time. Some days are worse, some days are better, but never "better" like how you understand that word.
For example, Tuesday night I had an extremely rough night. You might have seen me and thought I should be in the hospital. Wednesday I rested, all day, literally. Thursday I had energy and was go go go all day getting things done around the house. I over did it. By the end of the day my eyelids were droopy, my vision was unfocused, my voice felt strained to talk, my arms/shoulders/chest was struggling to be typing on the computer. Today I'm in between, mainly my throat is affected with weak swallowing and talking. I'm wearing my neck brace. My vision is still unfocused. I have to take it easy with my upper body. I had stiffness and pain in my joints. I did a little and rested a lot. I have no idea what tomorrow will bring. Perhaps I'll get a surge of energy and get out to a few stores. Or perhaps I'll barely be able to sit up in bed and need my mom to be more of a caregiver than a mom all day.
We don't know what it will be day to day or even hour to hour. We take advantage of the time we have feeling half decent because we don't know when it will end. So yes, you may see us out and about, wanting to meet for lunch, making phone calls, doing housework, traveling, etc. But at any given moment that changes and we can decline slowly or rapidly. That is when we have no choice but to cancel plans even if we really wanted to be there, when we can't talk on the phone because our voice is too weak, when we look depressed because we literally don't have the strength or energy to expel, when we wish there was someone there to help us but sometimes we don't want to ask and people think we are perfectly fine.
Chronic illness doesn't end, it only changes, sometimes better, sometimes worse, always unknown.
So let's just show one another some support, some grace, some encouragement and some love- healthy or chronically ill. God bless.
Tuesday, November 11, 2014
Another obstacle
Imagine this: You are standing in front of an obstacle course. It looks extremely hard with so many walls to climb, holes to jump over, a current to swim against. Even so, you are excited. You are excited to get started, to push through and to reach the finish line.
A voice comes on the microphone and says "Ready... Set... Now slowly walk around the course, peacefully over to the finish line to get your ribbon. Congratulations!" What? Congratulations for what? What did you really accomplish? Those looking on have puzzled looks on their faces and aren't very impressed. That wasn't very rewarding.
You are the person about to run that course. That course is life. If there weren't any twists and turns and ups and downs, what would you really have accomplished? What strength would you really have shown? Who would be inspired by what you did? Would it be rewarding? The answers are probably nothing, none, no one and no.
The Bible says "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." James 1:2-4 It then goes on to say "Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him." James 1:12
That crown of life comes after... after persevering... after persevering under trial. And while we are going through the trial we should consider it joy. We should acknowledge that God is molding us into who He wants us to be. Furthermore, through tough times we are able to count on God and boldly show God's strength in us. That allows us to glorify Him and allows others to draw near to Him seeing what He has done in us.
Yes it is hard and sometimes we just want to sit down and quit, but we wouldn't finish the course if we did. We wouldn't be mature and complete, who God intended for us to be.
For the past 10 years-ish my life has taken some twists and turns. For the past 5 years I've experienced things I never ever expected to. I'm sure many reading this can think of similar times in your own life. But as I keep going, God is writing my story, God is furthering my testimony. And perhaps closer to the end, God will help me write that book everyone keeps telling me to write. But without all those obstacles, there wouldn't be a story in order to write a book. There wouldn't be a testimony. No one would be able to see God's strength in me if I didn't have anything I needed to draw on His strength for.
So now imagine this: You are standing in front of an obstacle course. It looks extremely hard with so many walls to climbs, holes to jump over, a current to swim against. Even so, you are excited. You are excited to get started, to push through and to reach the finish line. You look to your side and there beside You is Jesus. He wants to run through this course with you. Will you let Him?
A voice comes on the microphone and says "Ready... Set... Now slowly walk around the course, peacefully over to the finish line to get your ribbon. Congratulations!" What? Congratulations for what? What did you really accomplish? Those looking on have puzzled looks on their faces and aren't very impressed. That wasn't very rewarding.
You are the person about to run that course. That course is life. If there weren't any twists and turns and ups and downs, what would you really have accomplished? What strength would you really have shown? Who would be inspired by what you did? Would it be rewarding? The answers are probably nothing, none, no one and no.
The Bible says "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." James 1:2-4 It then goes on to say "Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him." James 1:12
That crown of life comes after... after persevering... after persevering under trial. And while we are going through the trial we should consider it joy. We should acknowledge that God is molding us into who He wants us to be. Furthermore, through tough times we are able to count on God and boldly show God's strength in us. That allows us to glorify Him and allows others to draw near to Him seeing what He has done in us.
Yes it is hard and sometimes we just want to sit down and quit, but we wouldn't finish the course if we did. We wouldn't be mature and complete, who God intended for us to be.
For the past 10 years-ish my life has taken some twists and turns. For the past 5 years I've experienced things I never ever expected to. I'm sure many reading this can think of similar times in your own life. But as I keep going, God is writing my story, God is furthering my testimony. And perhaps closer to the end, God will help me write that book everyone keeps telling me to write. But without all those obstacles, there wouldn't be a story in order to write a book. There wouldn't be a testimony. No one would be able to see God's strength in me if I didn't have anything I needed to draw on His strength for.
So now imagine this: You are standing in front of an obstacle course. It looks extremely hard with so many walls to climbs, holes to jump over, a current to swim against. Even so, you are excited. You are excited to get started, to push through and to reach the finish line. You look to your side and there beside You is Jesus. He wants to run through this course with you. Will you let Him?
Monday, November 10, 2014
Introverts and Chronic Illness
An extrovert is someone who gets their energy from outside sources, craves being with others. They love to go out and will probably get bored if they don't have plans. They love talking on the phone and in person, heck they just love talking. They need those connections with people to fuel them with energy to keep going. They love group projects. They are the ones sitting on a crowded train during commute wanting to start conversations with anyone and everyone frustrated that everyone around them is reading, listening to music or on their phones.
Does the sound of all that make you uncomfortable or sound draining to you? Then you are probably an introvert, as am I.
There is nothing wrong with either category looking at it as a whole. Yet sometimes extroverts will think there is something wrong with introverts. Sometimes they will push them to go out more, criticize them for being anti-social, tell them they have to get out of their shell or lighten up, so on and so forth. Why do introverts have to transition over to become an extrovert? Why not the other way around? Better yet, why not just realize we are all different and that is ok, we weren't created to be identical (unless you are a twin ha ha).
Recently, I've been hearing and reading a lot about this. So I thought I would take a moment to discuss it and try to help people understand some misconceptions.
As an introvert, generally (not always):
1- We are not shy. Around friends, family and sometimes in public, we can be very outgoing. Even if we are quiet, quiet does not mean shy.
2- We like to listen.
3- We need a reason to interact. We don't want to just small talk or gossip just for the sake of talking. We'd rather sit in silence than do either of those.
4- We feel fake when forced into a situation of small talk. We'd much rather dive into an intensely deep, meaningful conversation. We can also feel fake if we are discussing a topic we have no interest in or know nothing about.
5- We may love public speaking. We just need our time to reflect before and probably also after.
6- We dislike talking on the phone, actually strongly dislike it. Expect your calls to go to voice mail so we can listen, reflect and then call you back when we are ready, or more than likely text or email you back.
7- We choose not to make plans every weekend. Answering "nothing" to "what are you doing this weekend?" is perfectly acceptable and often times preferred. We need to recharge.
8- We like things many people don't such as lectures, seminars, libraries, etc. where we can listen and/or learn.
9- We enjoy reading, writing, artwork, puzzles, researching, spending time with animals, gardening and chatting over the internet.
10- We do not mean to come off as arrogant, rude or stand-offish. Often times we are just deep in thought.
11- We do not like being interrupted and don't see it as being a break. We lose our train of thought.
12- We can be very good leaders. We just would prefer working solo as opposed to in a group more often than not. That is when we do our best work.
13- We make lists, lots of lists. We write everything down.
14- We tend to have our own opinions, which often times go against the vast majority of society. We like to think outside the box and do a lot of soul searching and research, sometimes over-analyzing, before coming to a conclusion on something.
15- We are self-motivated, but occasionally procrastinate.
16- We are most relaxed and comfortable when on our own or alone with significant other.
17- We tend to dislike crowds. We may be overwhelmed by all the stimulation.
18- We enjoy others with deep personalities and find them intellectually stimulating.
19- We don't get impressed by social, economic or career status of anyone. We see people as a whole, as a soul, not as a label.
20- We like to go out and be social, we just don't like to do it for nearly as long or as often as extroverts.
21- We tend to like to plan when we go out, so we can mentally prepare for the outing which even if enjoyable will make us exhausted by the end of the night.
Now add in a chronic illness to that. Add in several chronic illnesses. Add in these:
22- Sensory overload. Every sight, sound, motion shoots at you at once and your brain just can't handle it.
23- Anxiety and panic attacks.
24- Extreme fatigue, weakness, exhaustion- physical and mental.
25- Just straight out feeling sick- nausea, dizziness, lightheaded, tired, in pain, stiff, itchy, etc.
26- Feeling surrounded by people who don't understand that even though you "look fine" you are very sick and it's very hard.
27- Or worse, people who question you accusingly, criticize you, judge you and ridicule you for making up an illness.
28- Adrenal fatigue in which any sort of stimulation or stresser adds up and too much can possibly land you in the hospital.
29- A need to control your environment, not a control issue but a true medical need- certain room temperatures, no allergens or fumes, having to sit/stand/walk/lay down whenever the need arises.
30- Sometimes choosing not to go out because you feel like a burden because of all those accommodations- different foods, needing certain temperatures in the room, allergies, sensitives to fumes, needing to bring a wheel chair, etc.
2- We like to listen.
3- We need a reason to interact. We don't want to just small talk or gossip just for the sake of talking. We'd rather sit in silence than do either of those.
4- We feel fake when forced into a situation of small talk. We'd much rather dive into an intensely deep, meaningful conversation. We can also feel fake if we are discussing a topic we have no interest in or know nothing about.
5- We may love public speaking. We just need our time to reflect before and probably also after.
6- We dislike talking on the phone, actually strongly dislike it. Expect your calls to go to voice mail so we can listen, reflect and then call you back when we are ready, or more than likely text or email you back.
7- We choose not to make plans every weekend. Answering "nothing" to "what are you doing this weekend?" is perfectly acceptable and often times preferred. We need to recharge.
8- We like things many people don't such as lectures, seminars, libraries, etc. where we can listen and/or learn.
9- We enjoy reading, writing, artwork, puzzles, researching, spending time with animals, gardening and chatting over the internet.
10- We do not mean to come off as arrogant, rude or stand-offish. Often times we are just deep in thought.
11- We do not like being interrupted and don't see it as being a break. We lose our train of thought.
12- We can be very good leaders. We just would prefer working solo as opposed to in a group more often than not. That is when we do our best work.
13- We make lists, lots of lists. We write everything down.
14- We tend to have our own opinions, which often times go against the vast majority of society. We like to think outside the box and do a lot of soul searching and research, sometimes over-analyzing, before coming to a conclusion on something.
15- We are self-motivated, but occasionally procrastinate.
16- We are most relaxed and comfortable when on our own or alone with significant other.
17- We tend to dislike crowds. We may be overwhelmed by all the stimulation.
18- We enjoy others with deep personalities and find them intellectually stimulating.
19- We don't get impressed by social, economic or career status of anyone. We see people as a whole, as a soul, not as a label.
20- We like to go out and be social, we just don't like to do it for nearly as long or as often as extroverts.
21- We tend to like to plan when we go out, so we can mentally prepare for the outing which even if enjoyable will make us exhausted by the end of the night.
Now add in a chronic illness to that. Add in several chronic illnesses. Add in these:
22- Sensory overload. Every sight, sound, motion shoots at you at once and your brain just can't handle it.
23- Anxiety and panic attacks.
24- Extreme fatigue, weakness, exhaustion- physical and mental.
25- Just straight out feeling sick- nausea, dizziness, lightheaded, tired, in pain, stiff, itchy, etc.
26- Feeling surrounded by people who don't understand that even though you "look fine" you are very sick and it's very hard.
27- Or worse, people who question you accusingly, criticize you, judge you and ridicule you for making up an illness.
28- Adrenal fatigue in which any sort of stimulation or stresser adds up and too much can possibly land you in the hospital.
29- A need to control your environment, not a control issue but a true medical need- certain room temperatures, no allergens or fumes, having to sit/stand/walk/lay down whenever the need arises.
30- Sometimes choosing not to go out because you feel like a burden because of all those accommodations- different foods, needing certain temperatures in the room, allergies, sensitives to fumes, needing to bring a wheel chair, etc.
So Now
Add all of this together. This is why those with chronic illness who are introverts choose to stay in, choose to hold get-togethers in their own homes, choose to converse with people through chat or text, make and maintain close friends on facebook, write blogs to promote awareness, let go of people in their lives that make doing all of this and merely living more difficult for them.
We love our friends and family and we want to spend time with them, but we do things a little differently, and that is ok.
Sunday, November 9, 2014
Thank You
Since this is the month of thanksgiving, let me take a moment to say thank you.
I want to say thank you to everyone who has stuck by me through everything I've been through, not just currently but really my entire life. Thank you to the ones who lift me up when I fall, the ones who send a card just to let me know they are thinking about me, the ones who don't run when it seems so easy to do. Thank you for your grace, your support, your helpfulness, your love. Thank you.
But I also want to say thank you to some others. Thank you to all the people who let me down. Thank you to the ones who ridiculed me, attacked me, criticized me and put me down. Thank you to the ones who didn't believe in me or support me. Thank you to the ones who hurt me, walked all over me and kicked me when I was already down. Thank you to the ones who walked away when it was so easy to do so. You are the ones who allowed me to grow closer to God. You are the ones who helped make me stronger. You are the ones who helped shape me more and more into the person God created me to be. You are the ones who made room in my life for so much more. You are the ones who made me realize all those attacks weren't even about me but about you. You are the ones who exposed me to all the evil in the world and showed me how much I need God in order to overcome that evil. You were the stepping stones to my brighter future. Thank you.
There will always be pain, suffering, sickness, wrong-doing, evil. We live in a fallen world. Will you allow that to bury you beneath it? Or will you let it drop to the ground where it belongs, and then step on up and over to overcome? Will you try to do it on your own and fail? Or will you give it to God and allow Him to pick up the pieces to succeed? Will you look at all those times as negative experiences? Or will you look at them as positive ones, ones you are thankful for, ones that shaped you? Will you allow those things to consume you and defeat you? Or will you allow them in as growth and experience while becoming stronger?
You have choices. The biggest choice you have is do you accept Jesus or don't you? Jesus suffered and died on the cross, nailing our sins right there with him. We have the opportunity to be forgiven for all that wrong doing we have done. We have the opportunity of a relationship even better than with our closest loved one. We have the opportunity of an eternity in Heaven greater than our minds can even imagine. It's God's free gift to us, but we have to first accept it. Do you accept it?
Thank You God for that free gift You have given us of salvation. Thank You for Your grace, Your mercy and Your love. Lord, thank You for blessing us so much more than we will ever deserve. Lord, I pray right now that anyone who is hesitant on coming to You loses that fear, that You break down that wall for them, break down their heart and restore them. Lord, I pray for the sick, that they may be healed. I pray for the lonely, that they find comfort in You. I pray for those seeking jobs, that they may find their path clearly and quickly and that You will provide for them. Lord, I pray that You change the hearts in this evil world we live in, and that all may run to You. We don't know how many days we have, we don't know what those days will encounter, but in knowing You we can know we are free, we are loved and we have a home with You. Thank You Lord, for allowing me to be transparent with the world and not fear what others will do or say to me because of it. Thank you for my life and You being my strength in it. Thank You for hearing my prayer. In Jesus name I pray, Amen.
I want to say thank you to everyone who has stuck by me through everything I've been through, not just currently but really my entire life. Thank you to the ones who lift me up when I fall, the ones who send a card just to let me know they are thinking about me, the ones who don't run when it seems so easy to do. Thank you for your grace, your support, your helpfulness, your love. Thank you.
But I also want to say thank you to some others. Thank you to all the people who let me down. Thank you to the ones who ridiculed me, attacked me, criticized me and put me down. Thank you to the ones who didn't believe in me or support me. Thank you to the ones who hurt me, walked all over me and kicked me when I was already down. Thank you to the ones who walked away when it was so easy to do so. You are the ones who allowed me to grow closer to God. You are the ones who helped make me stronger. You are the ones who helped shape me more and more into the person God created me to be. You are the ones who made room in my life for so much more. You are the ones who made me realize all those attacks weren't even about me but about you. You are the ones who exposed me to all the evil in the world and showed me how much I need God in order to overcome that evil. You were the stepping stones to my brighter future. Thank you.
There will always be pain, suffering, sickness, wrong-doing, evil. We live in a fallen world. Will you allow that to bury you beneath it? Or will you let it drop to the ground where it belongs, and then step on up and over to overcome? Will you try to do it on your own and fail? Or will you give it to God and allow Him to pick up the pieces to succeed? Will you look at all those times as negative experiences? Or will you look at them as positive ones, ones you are thankful for, ones that shaped you? Will you allow those things to consume you and defeat you? Or will you allow them in as growth and experience while becoming stronger?
You have choices. The biggest choice you have is do you accept Jesus or don't you? Jesus suffered and died on the cross, nailing our sins right there with him. We have the opportunity to be forgiven for all that wrong doing we have done. We have the opportunity of a relationship even better than with our closest loved one. We have the opportunity of an eternity in Heaven greater than our minds can even imagine. It's God's free gift to us, but we have to first accept it. Do you accept it?
Thank You God for that free gift You have given us of salvation. Thank You for Your grace, Your mercy and Your love. Lord, thank You for blessing us so much more than we will ever deserve. Lord, I pray right now that anyone who is hesitant on coming to You loses that fear, that You break down that wall for them, break down their heart and restore them. Lord, I pray for the sick, that they may be healed. I pray for the lonely, that they find comfort in You. I pray for those seeking jobs, that they may find their path clearly and quickly and that You will provide for them. Lord, I pray that You change the hearts in this evil world we live in, and that all may run to You. We don't know how many days we have, we don't know what those days will encounter, but in knowing You we can know we are free, we are loved and we have a home with You. Thank You Lord, for allowing me to be transparent with the world and not fear what others will do or say to me because of it. Thank you for my life and You being my strength in it. Thank You for hearing my prayer. In Jesus name I pray, Amen.
Monday, November 3, 2014
Suicide Prevention
Disclaimers: First, no I am absolutely by no means considering doing this, please do not take it in that way. Second, if you or anyone else is please seek professional help/guidance immediately. I am not a medical professional and this does not constitute medical advice. The suicide prevention hotline in USA is 1-800-273-8255
In getting diagnosed with lyme disease and bartonella (a tick born co-infection), I have spent some time researching and conversing with others in the lyme community. More times than I can count I have heard about others who were pondering suicide or ones who already have. That breaks my heart. Before lyme disease, honestly I never understood how anyone could even consider taking their own life. But now in having lyme disease, though I don't agree with it, I understand their thinking and that in itself is hard to swallow.
When you talk to another person or look at another person or hear about another person, do you truly know what they are going through? Do you have all the facts at hand? Is what is called a fact even a fact, or is it misinformation, deceit and facts removed? Are you by chance judging that person, criticizing that person, or simply walking in the other direction when instead you could be of help? You could be the one that saves a life...
Lyme Disease and co-infections can possibly put you at risk of becoming suicidal. In my opinion, this is why:
- Lack of knowledge: Lyme disease is brushed off as no big deal... by medical professionals and therefore by family and friends also. People gasp at the word cancer. People don't even flinch at the words lyme disease. Both can kill you whether from the disease itself or complications of. Cancer patients receive support, encouragement, donations, gifts, walks, events, etc. Lyme disease patients... not much. The support is greatly lacking as a whole. This leaves a lyme patient feeling alone and isolated. The need to explain and re-explain, defend oneself over and over gets exhausting when we are already exhausted. We need people to believe us and support us.
- The financial burden: Because of lyme disease being brushed off in the medical community (which I can write an entire post about later), lyme patients typically have to make a choice that doesn't really end up being a choice: go to a regular MD who will brush it off and don't get proper treatment, don't go to any doctor and don't get treatment, or go to an LLMD (lyme literate MD) and get proper treatment. LLMD's don't accept insurance. The initial visit can be hundreds and hundreds of dollars. Then come follow up visits, medications, blood tests, imaging etc. As of next year apparently Medicare along with not covering LLMD's also won't cover anything they order like prescriptions. I've heard of lyme patients who have spent 10s of thousands of dollars in seeking and receiving treatment, out of pocket, in debt. These are patients who typically cannot work. The money to get treatment therefore typically doesn't exist. We go broke trying to get well or we continue to get sicker.
- Physical Sickness: Every single second of every single day in varying degrees. I was able to go on that road trip I mentioned previously because of accommodations which included reducing my medication dosage. I can't keep my dose low. Now that it's back up I'm really sick again. It's hard to eat, what I can manage to stomach is not the healthiest food, that in return makes me sicker. Lots of pain, stiffness, chills, nausea, dizziness, extreme extreme fatigue and tiredness. The quality of life is typically pretty horrible for someone with lyme unless/until it happens to go into remission. Remission is not guaranteed or permanent. It is SO hard, even if it is invisible to you.
- Mental Illness: Lyme and bartonella along with taking the meds for them can mess with your brain, very badly. I've already dealt with it and it's crazy hard. It makes you feel like a different person. It takes over. Sometimes you don't know if it's you or the lyme anymore. It makes you have mood swings, personality changes, rage, depression, anxiety. Mental illness in general is shrugged off a lot, but this is stemming from a physical disease and even then gets shrugged off. People seem to think we can just change our way of thinking or seek help. It's not that easy. There is a bacteria spiraling through our bodies and our brains making physical changes happen inside us. We don't like it but we can't change it.
- Isolation: The loss of family and friends. Again coming back to the isolation. Even when people do believe you and start out supporting you, slowly they sometimes start to leave. This isn't like the flu or chickenpox that after a week or month or so it all goes away. It is chronic and people either don't quite understand how that works and/or can't handle it. It causes break ups, divorces, friendships lost and so much abandonment, loneliness and pain.
So what can you do in support of others struggling? In my opinion, just be there, and make sure the other person knows it. Don't try to solve the problem. Just provide an ear to listen, a shoulder to lean on, a hand to hold. Send a card, say a prayer, make a donation, offer a ride to the doctor, ask to learn more about what they are going through. Ask what you can do, or better yet just say you are going to do it... and then, actually do it, and do it again and again. Don't give up on us.
Lastly, as I mentioned in the beginning, I am not considering this. The reason for me is Jesus. If you don't yet know Him, if you believe but haven't given your life to Him, there is no better time than now. Don't go another day, another second, without the best relationship of all, the relationship that means you will never be alone, the relationship that provides hope, joy and love. The relationship that never ends and always cares, the hand always reaching out to you. Jesus. The way, the truth, the life. My everything who can be your everything also. There is hope and that hope is through Him who gives you strength. Seek Him first and the rest will be provided to you.
Stay strong. God bless.
In getting diagnosed with lyme disease and bartonella (a tick born co-infection), I have spent some time researching and conversing with others in the lyme community. More times than I can count I have heard about others who were pondering suicide or ones who already have. That breaks my heart. Before lyme disease, honestly I never understood how anyone could even consider taking their own life. But now in having lyme disease, though I don't agree with it, I understand their thinking and that in itself is hard to swallow.
When you talk to another person or look at another person or hear about another person, do you truly know what they are going through? Do you have all the facts at hand? Is what is called a fact even a fact, or is it misinformation, deceit and facts removed? Are you by chance judging that person, criticizing that person, or simply walking in the other direction when instead you could be of help? You could be the one that saves a life...
Lyme Disease and co-infections can possibly put you at risk of becoming suicidal. In my opinion, this is why:
- Lack of knowledge: Lyme disease is brushed off as no big deal... by medical professionals and therefore by family and friends also. People gasp at the word cancer. People don't even flinch at the words lyme disease. Both can kill you whether from the disease itself or complications of. Cancer patients receive support, encouragement, donations, gifts, walks, events, etc. Lyme disease patients... not much. The support is greatly lacking as a whole. This leaves a lyme patient feeling alone and isolated. The need to explain and re-explain, defend oneself over and over gets exhausting when we are already exhausted. We need people to believe us and support us.
- The financial burden: Because of lyme disease being brushed off in the medical community (which I can write an entire post about later), lyme patients typically have to make a choice that doesn't really end up being a choice: go to a regular MD who will brush it off and don't get proper treatment, don't go to any doctor and don't get treatment, or go to an LLMD (lyme literate MD) and get proper treatment. LLMD's don't accept insurance. The initial visit can be hundreds and hundreds of dollars. Then come follow up visits, medications, blood tests, imaging etc. As of next year apparently Medicare along with not covering LLMD's also won't cover anything they order like prescriptions. I've heard of lyme patients who have spent 10s of thousands of dollars in seeking and receiving treatment, out of pocket, in debt. These are patients who typically cannot work. The money to get treatment therefore typically doesn't exist. We go broke trying to get well or we continue to get sicker.
- Physical Sickness: Every single second of every single day in varying degrees. I was able to go on that road trip I mentioned previously because of accommodations which included reducing my medication dosage. I can't keep my dose low. Now that it's back up I'm really sick again. It's hard to eat, what I can manage to stomach is not the healthiest food, that in return makes me sicker. Lots of pain, stiffness, chills, nausea, dizziness, extreme extreme fatigue and tiredness. The quality of life is typically pretty horrible for someone with lyme unless/until it happens to go into remission. Remission is not guaranteed or permanent. It is SO hard, even if it is invisible to you.
- Mental Illness: Lyme and bartonella along with taking the meds for them can mess with your brain, very badly. I've already dealt with it and it's crazy hard. It makes you feel like a different person. It takes over. Sometimes you don't know if it's you or the lyme anymore. It makes you have mood swings, personality changes, rage, depression, anxiety. Mental illness in general is shrugged off a lot, but this is stemming from a physical disease and even then gets shrugged off. People seem to think we can just change our way of thinking or seek help. It's not that easy. There is a bacteria spiraling through our bodies and our brains making physical changes happen inside us. We don't like it but we can't change it.
- Isolation: The loss of family and friends. Again coming back to the isolation. Even when people do believe you and start out supporting you, slowly they sometimes start to leave. This isn't like the flu or chickenpox that after a week or month or so it all goes away. It is chronic and people either don't quite understand how that works and/or can't handle it. It causes break ups, divorces, friendships lost and so much abandonment, loneliness and pain.
So what can you do in support of others struggling? In my opinion, just be there, and make sure the other person knows it. Don't try to solve the problem. Just provide an ear to listen, a shoulder to lean on, a hand to hold. Send a card, say a prayer, make a donation, offer a ride to the doctor, ask to learn more about what they are going through. Ask what you can do, or better yet just say you are going to do it... and then, actually do it, and do it again and again. Don't give up on us.
Lastly, as I mentioned in the beginning, I am not considering this. The reason for me is Jesus. If you don't yet know Him, if you believe but haven't given your life to Him, there is no better time than now. Don't go another day, another second, without the best relationship of all, the relationship that means you will never be alone, the relationship that provides hope, joy and love. The relationship that never ends and always cares, the hand always reaching out to you. Jesus. The way, the truth, the life. My everything who can be your everything also. There is hope and that hope is through Him who gives you strength. Seek Him first and the rest will be provided to you.
Stay strong. God bless.
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