Diagnosed with an incurable disease

I've been diagnosed with an incurable disease.

Several of them actually.

I have to live with these diseases the rest of my life, until it maybe takes my life.


But nothing has changed. I've been struggling through this for almost 5 years now. However, I recently discovered if you refer to chronic illness as incurable disease, people take you more seriously. And that's important, because it's very serious. It's life changing. It's quality of life declining. And sometimes it is life ending. And when you get that in your 20's, you have decades of it to not look forward to. I hate when people say "at least you are young." Really? I'd much rather have gotten sick when I was 80, or at least 60 or 50 even. Geeze, allow me to live my young adulthood at least. But no, instead I'm given multiple conditions, illnesses, incurable diseases, whatever you want to call them, at a young age. Treatment helps but doesn't cure. And treatment thus far on me has barely helped any. I'm one of those "lucky" ones.

I'm thinking I need to change the title of my blog because I'm not chronically cheerful, no one is. I try to be, but if I was positive and smiling 100% of the time I think there would be something even more seriously wrong with me.

I've been having some extremely down days. Part of it is because it's my first Christmas season divorced, realizing he's living his perfect little life now with his perfect healthy family. She replaced me when I wasn't good enough, couldn't do enough and couldn't provide what he wanted. That hurts. No matter how much time passes.

But the bigger thing at the moment is my MG is horrible. Worse than that is my lyme and bartonella are horrible. They are attacking me mentally. It's not something you can snap out of. It is a physical thing physically attacking the brain. It changes you. It makes you think, say and do things you don't want to. You get so angry. Fits of rage. Hatred. Sadness. What is even worse than this? No one seems to believe you or understand it unless they also suffer from it.

I have several incurable diseases. They attack me every second of my life, it never ends, all it does is change. This symptom, then that symptom, physical impairment then mental impairment then both. It's one heck of a horrible ride to be on.

I just want people to realize that even though I look fine, I'm not. I can't handle being accused, argued against or forgotten again. It hurts when people acknowledge me when I am positive but many go into hiding when I'm negative. It hurts when you cry out for help and still feel so alone. I need support, prayers and love more than ever right now. Thank you.

Sorry for such a downer post, but this is my life and I'm not going to edit it to appear to be someone I am not. I'm struggling.

The things you don't see

Friends and family see us out. We look fine. Therefore others mistakenly perceive that we are fine. That is so far from the truth and that is hard for us to explain over and over. With chronic illness, many times what you see is not what you get. Here is a little behind the scenes with chronic illness, the things you don't see or maybe don't realize the reason behind them:

-- laying in bed doing nothing for hours before and after "going out" in order to survive that outing (MG/POTS/Lyme/Adrenal/Candida)

-- taking hours to get ready not because we are high maintenance but because we actually need rest breaks while attempting to get ready (MG/POTS/Lyme/Adrenal/Candida)

-- scheduling things every other day or even every two days, including doctors appointments or trips to the store, in order to give our bodies a break from the "having to get ready" part of the day (MG/POTS/Lyme/Adrenal)

-- sitting in the back corner of church and trying not to shake hands so to do our best to avoid catching any germs (immune deficiency could be by itself or as a result of another illness)

-- needing, not wanting, but needing to avoid church, social outings, etc. because our bodies literally cannot do more than the minimum of just existing today (MG/POTS/Lyme/Adrenal/Candida)

-- holding a child or pouring a jug of milk means we might not be able to use our arms later or tomorrow or for a few days (MG)

-- our heart racing 180 beats per minute (when the average should be around 60), blood pressure dropping and blood pooling to our legs, just while standing and talking to you or waiting in line at a store, which causes all sorts of other symptoms and thus the need to rest and recover after those "simple" tasks (POTS)

-- waking up drenched in sweat and needing to open the window in the middle of the winter and get an ice pack, minutes later absolutely freezing with the chills, repeatedly through the night and sometimes day, every night, every day (POTS/Lyme/Bartonella)

-- waking up in the middle of the night with air hunger or partial diaphragm paralysis gasping for a breath of air (MG)

-- wearing a soft collar neck brace to support the muscles that hold up our head because they can't do it on their own (MG)

-- wearing a cold mask on our eyes so that they stay open enough to see you or to drive or to read (MG)

-- others in our home needing to avoid perfumes, lotions, hair sprays, certain cleaning products and detergents, etc. because they make us have a very bad flare up (Mast Cell which could be related to POTS/Lyme)

-- while on facebook "wasting time" as others assume, we are seeking and giving support to others in similar situations who have in fact become our closest friends from a distance (any illness)

-- laying in bed while on the computer in order to rest our arms so we can actually be on the computer (MG) and keep our legs up so we can be on the computer with out feeling lightheaded (POTS)

-- asking someone else to open cans, bottles, sometimes even the fridge door, doors to stores, carry things, pour something, cook for us, clean for us, go shopping for us, drive us, etc. (MG/POTS/Lyme/Adrenal)

-- crying, yelling, getting angry, and then getting frustrated that that happened because we cannot control it and feel like something is inside of us taking over and we hate it (Lyme/Bartonella)

-- our feet are burning up, so so hot and it's impossible to ignore (Bartonella)

-- we itch, constantly, all over (Candida)

-- that picture we were standing smiling in- we were in so. much. pain. (Lyme/back problems)

-- as you are socializing, we are overloaded with every movement, every color, every noise, every temperature and feeling. huge horrible sensory overload. (may be related to POTS and/or Lyme)

-- having to ask everyone we are about to see if they or anyone with them is sick prior to seeing them, or if they have cats/dogs, smoke, etc. because it will cause a huge flare up/we will get sick/can land us in the hospital (immune deficiency could be by itself or related to another illness)

-- checking out the layout of a place we are going, how far away parking is, where the closest bathroom is, how many seats are available before deciding if we can go (MG/POTS)

-- the extra cost of paying hundreds to thousands out of pocket for treatment because the doctors who treat it don't accept insurance due to the huge controversy (Lyme/Bartonella)

-- the extra cost of needing to eat clean/non-processed because of how processed foods as well as dairy, gluten, sugar, yeast flare up our symptoms badly (multiple illnesses)

-- sore throats, plugged ears, painful sinuses, swollen glands, swollen lymph nodes, distorted vision, weak muscles, nerve pain, joint pain, weak tendons, nausea, dizziness, lightheadedness, trouble breathing, trouble swallowing, constant ringing in the ears, etc. etc. etc. (multiple illnesses)

-- the times we don't take pictures- repeatedly in the hospital, on oxygen, some on a ventilator, getting stuck with needles over and over, central lines placed in our neck/chest, surgery, feeling so incredibly jailed inside our own bodies and yet still trying to walk through life staying positive and smiling (multiple illnesses)

-- when others tell us you're glad we are doing so well (when we aren't) or asking what we do all day, or why we aren't working (if we could we would), or recommending this that everything when you haven't walked in our shoes- it's probably the 1000th time we've had that said to us and it's very hard to hear over and over. We just want your support, a shoulder to lean on, an ear to listen, friend who won't accuse or demean us for something we cannot control. (multiple illnesses)


These are only a few of the many things you don't see. But I hope this helps you better understand the different accommodations we have to make and why we ask you to make them for us. I hope this helps you understand that life with chronic illness isn't relaxing in bed all day everyday. It's a constant battle, draining, exhausting, painful, lonesome and very very misunderstood. Thank you for doing anything you can do to help us fight this fight. We appreciate it so much and wish we could do more to give back.

Hospital Update

Part way through 2014, I had a goal. Realizing I made it thus far without a trip to the hospital this calendar year, my goal was to make it the entire calendar year without. I realized this was mostly out of my control, but I was hopeful. It would have been the first calendar year since I don't even know, maybe since 2004? that I would have stayed out of the hospital completely.

I made it 11 months. November 30th, 2am. I woke up in the middle of the night with nearly unbearable stomach pains and nausea. I'll spare you the details but I remained awake severely sick through the night into the morning. Around 7am I just couldn't take it anymore and told my mom I need to go to the hospital. There was nothing left in me and I couldn't get anything to stay in me so in addition to the pain, nausea and sickness I was getting weaker by the minute. MG and POTS flare ups were just around the corner.

I was admitted and remained in the hospital for 3 days. My fever spiked, blood pressure dropped, head was hurting... but hey, with IV fluids IV zofran the stomach issue was improving. After about a day and a half I was able to slowly start eating again. Once my fever went down and food stayed in me, they sent me home.

So what landed me in the hospital? Well that's part of the problem. They are guessing it was a virus. Guessing. That's what aggravates me. They didn't do anything to find out what it was, nothing. All they did was make me stable. That's what aggravates me about the medical system in general. They want to drug you up and send you home. No thank you! I refuse pain medication and many other meds as much as possible. I don't want to mask my symptoms; I want to figure out the cause and treat it to the best of my ability! They did nothing to address the breathing issues that arose while I was there. And most concerning, my white blood cell count dropped drastically. Normal is typically above 4. When I was admitted it was 5.8. When I left it was 1.8! Your white blood cells are what protect you against infection. Mine are currently very low putting me at risk of catching anything. If they drop lower my own bacteria in my mouth can actually make me sick. That's insane. I want answers, not just an enormous bill for sleeping in an uncomfortable bed.

My MG and POTS are flaring now as that is what getting sick on top of sick does. I am weaker, vision unsteady, balance off, dizziness, lightheaded, still some come and go nausea, fatigued. Also, I had to stop my lyme meds since I couldn't keep anything in me so now I have this week off starting different meds for the lyme next week. So now my lyme is also flaring having nothing to keep it under control... joint pain, stiffness, brain fog, lyme rage/anger/mood swings. In addition I have a sore throat and don't know what that's stemming from.

So anyways, if in fact it was a virus that landed me in the hospital, this is what I often talk about. I must must must avoid people who are sick. My body does not fight things off like healthy people do. And when I catch something it affects me much stronger, risking other serious complications. I am thankful this stay was 3 days as opposed to my last stay of 6 weeks, but no hospital stay is fun or cheap. So please please if you are sick, don't be near me because it's a risk I cannot take. We with chronic illness really can't stress this enough and yet we often feel still people just don't quite understand or care to acknowledge that need unfortunately. I myself should probably do more to avoid this such as wearing a mask in public as I know some do but I haven't had the courage to do that quite yet. So many people don't even go out because of this. What I dealt with was extremely mild compared to what some others have had happen or what it could be. Bottom line: we cannot risk getting sick on top of sick.

Having chronic illness really is hard to deal with. It's hard when those around you don't understand that you look fairly normal but constantly feeling sick, constantly fighting inside your own body. It's hard when you get questioned and accused by doctors, friends and strangers. It's hard when you have to prove yourself because it's not outwardly visible. It's hard when you know it's never the end and it can always get worse, another hospital stay is years, months or days away. It's hard to realize THIS is your life and you can't exchange it for a new one. THIS is your body you are jailed within that prevents you from living life to the fullest you want to live it. It is extremely hard, feeling alone, isolated, down, defenseless, accused, attacked, forgotten.

So as I once again rest, I take a moment here to update those who care to be updated, but also a moment to say thank you. You, who are reading this, who care to know, who support and encourage me... you are the ones who help keep me going, who keep me wanting to fight the fight that never ends. Thank you especially to my parents who no matter how many days, weeks or months I am in the hospital, they are there. And when I'm not in the hospital they are still there, helping me whenever and however I need. They took me in when another threw me out. I don't know what I'd do if I didn't have them. And also another special shout out to someone I've grown so close to in a fairly short amount of time. Thank you for driving 2 hours just to come see me in the hospital. You are a bright light when my world goes dark. Your Godly encouragement, support and comfort have been such a blessing. To all who share my burdens and help keep me standing when the world beneath me crumbles, thank you.

All about Lyme Disease

**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!

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

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.

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.

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?

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.

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.

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.

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.

Craving bad things!

Among the list of accomodations to allow myself to take a road trip, one was reducing my medication dose for the lyme/bartonella. The medication induces herxing as it kills the lyme/bartonella. This means your symptoms get worse as the toxins leave your body. Reducing the meds allowed a reduction in symptoms. I was told I can occasionally do that and give my body a break. But for the most part, I must keep the dose higher in order to attack the lyme/bartonella.

Now that I'm back from my trip, I increased my dose back to where it needs to be. Yikes. The joint pain, stiffness, chills, headache, nausea and weakness have returned. However another symptom joined and this one is very concerning. This is going to sound odd but reading and talking with others who have lyme/bartonella I also find it's somewhat common.

Typically I not only eat very healthy but I actually enjoy eating healthy. I cut out sugar, gluten, dairy and processed foods as much as possible. Organic, non-gmo, vegetables and grass-fed/antibiotic-free meats is how I eat to feel the best I can. Carbs, sugar and cheese typically gross me out because I know the harm it causes my body.

These past few days I am insanely craving carbs and pizza but especially sweets. I am feeling extremely nauseated just thinking about salad or anything healthy. Even my normal go to food of burgers is grossing me out. I am forcing myself to eat. The healthiest thing I can tolerate right now is organic... baby food! Yes, baby food.

This may sound trivial but it's very concerning. It is so imperative that I eat healthy not only because of the lyme and bartonella but because of my other conditions also. Bad food makes me flare up badly. The lyme and bartonella cause this craving so they can take over. Obviously they don't like being killed off by the meds. Sugar/carbs will feed them and thus that's all my body wants me to eat right now.

So this is brief, but since its very concerning to me, I'm just asking for prayers about this. Please pray I can eat healthy again, because I need to. Please pray the lyme and bartonella leave my body and stay away and stop making me crave sweets and carbs. Please pray that I am healed. Thank you!

Carpe Diem!

When you have a disabling chronic health condition, life changes, typically in a way that others would consider as "worse." Yes I have some very very bad health days. It's hard. It truly is life changing, not only for myself but for loved ones too. Through this however, I've learned so very much that I may not have otherwise. One thing I learned is when you have a "good" health day- seize the day! You never know how long it will last or when the next one will arrive. And that is exactly what I chose to do.

On my own, I took a road trip to Tennessee, I enjoyed about a week at my first stop, continued to my second stop, and then I took a road trip back. Praise the Lord! He kept me safe, strong and able! During this time I was asking for prayer from many and I know it is only through our great and powerful God that I could do this. As my go to verse says "I can do all things through Christ who strengthens me." Philippians 4:13

2 weeks ago I set out on the road. It was a stormy day and as soon as I got on the highway I could barely see the lines on the road. It was extremely frightening and I considered turning back. But I felt that voice inside me say, "stick with it. I've got you." I kept going. I also prayed and talked with God just about the entire way.

Doing this wasn't an easy task, but it certainly was worth it. It required numerous accommodations. First, I never could have done this if I didn't think of this first accommodation. I took a flat pillow, folded it over, and placed it on my lap while driving. That way my arms were able to rest while holding the wheel. It was still exhausting on my muscles to control the wheel, but this helped greatly. Another thing I had to do was stop every 2 hours and walk around due to my blood clot condition/risk. Also my normal of wearing compression socks- so stylish! Though the speed limit was 70 mph most of the time, I averaged about 55 or 60 because I get motion sickness. Also, I packed my own food since I need to eat organic/clean as much as possible. Though my first destination was about 9 hours away, it ended up taking me 13 hours over a period of 3 days to get there. After a few hours driving I was done for the day. My arms, legs, core and eyes needed lots of rest, and that's all the rest of my day consisted of. Most of my stuff was packed into the trunk but I made an overnight carry on bag for the way there so I only had to load and unload that, to save on my muscles and energy. Lastly, I reduced my lyme/bartonella meds in order to help prevent a bad herx- it worked! Now that I've returned, the dose has been increased and the symptoms are really bad again.

Once I was there, the first 2 days were pretty much rest days. After that I could do more but it was still my usual of go out for a bit then come back and rest. However, again I praise the Lord for being able to do what I did even if it's nowhere near "normal" because for me it was huge! We went out to eat, cooked, played games, watched movies, went to the park, went for short walks, drove through different cities and took way too many pictures lol. 

I think the highlight of the trip was something I wouldn't have done had I known where it was. I get very very bad altitude sickness. I think it's related to POTS. Where I was in East Tennessee was at the base of the mountains and pretty much as high as I can go before altitude sickness kicks in. For many, altitude sickness doesn't happen until you are many thousands of feet up there. For me it kicks in probably right around 2,000 feet. Well, I really wanted to see a waterfall. But all the waterfalls were either really high up or a far hike. Both are out of question for me. So we decided to at least go to the path that leads to the waterfall and I could walk what I could and see the little river leading to it. I had no idea this path started way way way high up in the mountains!! I started feeling it just as we were driving up there. I have an ox-sat meter and my oxygen level was dropping but I was being careful and I still felt I could breathe even though it was hard. When I got out of the car my "tipping" started as I called it. Basically when this happens, it looks like you are drunk. You have a hard time walking, your legs just really don't want to move or support your weight, your core gives out and your body just tips- forward, backward, sideways. This is how it was when I was in the hospital. It's very difficult feeling the struggle of not being able to walk. But with the help of the person with me, we walked out just a little bit, took some photos, and walked back. I couldn't have done that on my own, so thank you! It was definitely a memorable day.

From being in East Tennessee, I then headed out towards the Nashville area to visit my cousin. Goodness, I had no idea I was going to have to drive through very high mountains to get there! Yikes! Again my oxygen was dropping, as I was driving. But I made it and that's what matters. Praise the Lord again! There I was able to spend some time visiting my cousin and meeting her baby for the first time. So glad to have that opportunity. And then finally I started my drive back. 13 days after leaving, I was back, but now with this adventure behind me that I set my mind out to accomplish and I did just that. Carpe Diem!

If you have a chronic health condition, don't put yourself at risk by doing something you aren't able. However, realize that we can call on God's strength at any time, and through Him, if it be in His will, we can do ALL things. Thank you all for praying for me these past 2 weeks, and thank you God for this amazing opportunity. Though I must say, I think next time, even though it comes with its own risks... I'm booking a plane ticket :)

Now it's time to rest! God bless.

Lyme Rage

Lyme rage is what they call it. "It" being what I've been going through and yeah, it's rough... not only for me but all those who come in contact with me. So, here's your warning and information on it.

Mood swings can be a symptom of lyme disease, a symptom of bartonella (the tick-born co-infection I have), a side effect of the medications I'm on, and a herxing or die off effect when the lyme and bart get killed by the meds. This ranges from aggravation and frustration to anger, having a VERY short fuse, blowing up at the stupidest little things, being emotional, break downs, horrible sad negative depressive feelings and anxiety. It's nothing like I've ever experienced before and I cannot control it. I repeat, I cannot control it. I don't know when it will come on, I don't know when it will stop. All I know is I do not feel myself and I strongly dislike feeling that way.

So please, do not take offense if I happen to abruptly chew your head off in the coming weeks, months or even years for however long it takes to get this lyme and bart to go away. I apologize in advance. It has nothing to do with you; please don't take it personally. I just pray that my friends and family and anyone I come in contact with along the way will understand this, have the patience with it, and be supportive to me. I pray that the lyme and bart actually do go away instead of stay or hide out in remission. I also pray that the lyme and bart take with them the mg, pots, candida, adrenal fatigue, etc.

What can you do? Well, my triggers for this seem to number one be stress. So if you can help me avoid stress, all the better. Negativity, criticism, judgement, control seem to be others. If I experience those things right now I seem to snap. So I guess, if you want to help me get through this, just be positive, focus on the good both with my life and when you talk to me whatever it is you are talking about. Allow me to live how I can and do what I can and help me when I can't if I want the help. Please. Don't be fake but try to help me stay focused on the good. If there are things that I really don't need to attend to or answer, just help me out by not bringing it up. This all may seem like no big deal, or it may seem like a lot, I don't know. I just know I need your help getting through this lyme and this is one way you can help. So thank you.

Lyme is so much more serious and debilitating than it's made out to be. I will have to write a post just about lyme in the near future. Until then, I've got some major plans in the works. I say major because it is compared to my life for the past 4.5 years while being sick. Heck, even if I wasn't sick, this is pretty big. So please pray with me if you will for the strength, endurance, energy, ability and right mind to not only get through this but to enjoy these plans I have coming up. I want to look back and say, wow, I actually did that! ...and then plop down on my bed and hibernate to recover.

I need to do what I can, when I can, all the while saying 'I think I can.' Because truly, with God, I can.

Thanks for your support, encouragement, love and prayers. God bless you.

If you read no other post, read this.

What if I told you all I had cancer?

You would be shocked. Depending on how close to you I am, your heart might drop, you might cry. It would be devastating. You would have sympathy, perhaps empathy, want to help out however you could. You might go do one of the walks in support, understand the financial burden. You would tell me to rest rather than push hard. You would be slightly closer to understanding what it is I'm going through because you've heard all about cancer.

I don't have cancer.
But I do have Myasthenia Gravis, POTS/Dysautonomia, Lyme Disease, Bartonella, Candida, Adrenal Fatigue, a blood clot disorder, an immune deficiency and back problems, among other "smaller" things.

So why is it that many of us with any of those conditions often feel like people don't get it, don't believe us, don't understand the seriousness of the condition, and sometimes even don't really care?

I think a major answer to that question is awareness. And diving even deeper through that is why isn't there awareness? That answer in itself flares off into many different directions. We need to stop believing the lies and start doing our own research. We need to stop doubting the people going through these conditions and believe their word and show support. We need to treat everyone with the empathy, care and grace we show to those who have cancer, whether or not we have any illness at all.

I am not downplaying the seriousness of cancer. Rather I am trying to educate you on the seriousness of other illnesses that are out there. I'm focusing on the ones I have because those are the ones I know, and they keep adding up. The more we are aware, the less ignorant we are and the more we can relate to others which can be followed by helping others. And I truly believe, it is in giving that we receive. Bless to be blessed.

So... quick summary for no reason other than to educate, promote awareness, remind others of what it is we deal with each and every day even though it is invisible.

Myasthenia Gravis- an autoimmune neuro muscular disease. Our body mistakenly attacks our own body- particularly the connection from the nerve to the muscle. The more we use a particular muscle, the more it attacks, thus the more we use a muscle the less we are able to use that muscle. Opposite of exercising,  which is why exercise is bad for us. Along with using the muscle, heat, stress and many medications can do the same thing and make us worse. The best thing to do is rest and small amounts of activity at a time with conservation of energy. This can affect arms, legs, core, neck, vision, smiling, talking, chewing, swallowing and breathing. It is serious and it can be life threatening. It doesn't slowly progress or slowly get better, it is different every day, every hour, sometimes every minute. This is hard for people to understand, and therefore believe. No cure.

Dysautonomia particularly POTS- POTS is a type of dysautonomia. Dysautonomia is dysfunction of our autonomic nervous system. This means at any particular time any of the automatic functions of our body may go haywire- blood pressure, heart-rate, digestion, respiratory, temperature, vision, gi functioning/motility, muscles, balance, etc. POTS specifically is when standing your heart-rate skyrockets, and typically your blood pressure drops. Because of this a large number of other symptoms come along and many times people will pass out, sometimes people will have seizures. It's often times important to get some form of exercise but its also important not to stand in one place because all the blood will pool to the legs and the body will give out. Fluids and salt are some of the most important things for POTS, as well as compression socks. Some people can barely function, others have many decent days. POTS is a syndrome so there is usually an underlying condition that brought it on but very often that condition is unknown. No cure but sometimes it will go away.

Lyme Disease- As I'm just starting to learn about this, I'm seeing the extreme controversy over it and due to research very much siding on the more controversial side, the side you won't hear on the news or from the doctors, the side you will probably only believe if you walk in the shoes of someone who has it. Lyme is extremely serious and can be extremely disabling. It is caused by a tick bite. You might never see the tick or know you were bitten, you may not even get the classic bullseye rash. It can affect just about any system or part in the body, affecting you both physically and mentally. It can hide and be very hard to attack. Blood tests can be pretty much worthless, and it is important to find an LLMD- a lyme specialist, often they don't take insurance because of the controversy behind it. In short, it's a nightmare. Whether there is a cure or just remission is also controversial, but to reach either is quite a struggle.

Bartonella- Also starting to learn about this one. People may think of it as the cat scratch disease which it can be but then often much more mild. My key symptoms were extremely hot feet and a rash that looked like scratches. But this also affects you very strongly/negatively both physically and mentally. This is most likely what is causing me to have mood/personality changes. Very scary. Also very hard to get rid of.

Candida- Talk about controversy, starting to wonder if I got all the controversial illnesses just so I could get the word out about them. Anyways, candida exists normally in the body in a normal amount. But antibiotics, sugar, yeast, processed foods, inhalers, steroids, etc. feed this. When it receives too much of that "food" it takes over. This again can affect just about any part/system of the body causing serious illness. Most recognized as well as mild would be thrush on the tongue. But that is nothing compared to a full blown candida infection. Blood tests are often unreliable and doctors may claim this really isn't a problem. When you've been on 50 medications in 9 months, it's a problem. I'm not claiming this to be true as I'm not 100% certain but I have read candida is what decomposes your body after you pass. So if that's true, if you have an overgrowth of candida while alive, think about what it may be doing to you. Another very very hard one to get rid of. The best way to get rid of it is to eat a clean diet of no sugar, no yeast, no processed foods, stay away from antibiotics and other medications as much as possible, and take probiotics. If it's out of control you need high dose probiotics.

Adrenal Fatigue- I honestly haven't done much research about this. What I know is my adrenals don't quite work as they should. So any stressor- whether it be physical, mental, emotional, chemical (such as fumes), allergens, sensory (noises/visual), adds up. Normal people have an empty cup and with all these stressors the cup never even reaches the top. They can handle it. With adrenal fatigue my cup is already half full or more. Each of these stressors brings me closer to the top and time and time again overflows. My body feels like it is giving out on me, I have no energy to function. I have no choice but to rest. Resting means a quiet room, most likely not a lot of noise or visual stimulation, doing absolutely nothing to allow my body to recover and be able to work again. Some people can get adrenal crisis which is a medical emergency and can be life threatening.

Blood clot disorder- the one I have means my blood clots too easily. This means I'm at higher risk of a blood clot and pulmonary embolism- life threatening blood clot in the lungs which I've already previously survived. This means I must walk every 2 hours. If I'm taking a long trip, in the hospital or getting surgery I will need to receive or give myself shots as blood thinners to help prevent the clotting.

Immune deficiency- My deficiency is in protection against pneumonia, strep, ear and sinus infections. Normal people fight these things with their immune systems. Well my immune system is a little bit broken, ok probably more than a little. I really can't fight these illnesses if I encounter them. So my only prevention is staying away from sick people. I also take vitamin c, probiotics and other supplements. Awareness of this is important because it is soooo helpful if people wash their hands, sneeze/cough into a kleenex or your shirt (not your hands!), not go out in public if you are sick, and clean/disinfect your homes. Allergies (which I have very badly to environmental stuff as well as extreme allergy to cats and some dogs) can turn into a respiratory problem which can easily turn into pneumonia for me. "Going out" isn't so easy for me.

This is my case and everyone is different, but many of us have more than one illness, and many times they don't work together. In my case, having Lyme and Bartonella right now are making my MG and POTS flare up. The medications I have to take can make them flare up also. The medications also make candida worse. For POTS, I'm supposed to get some exercise, but exercise makes MG worse. I have to move around because of the blood clot risk, but too much again makes MG worse. It's a crazy vicious cycle. For the most part, I "look" normal, but I'm far from normal. What drives us who have these conditions crazy is hearing people say "So other than MG (and/or POTS, Lyme, etc) you are healthy?" Excuse me/us? No. MG/POTS/Lyme in itself is enough but add them together, good grief, that's far from being healthy. It's an every second invisible struggle! Yet we must continue to overcome. Overcoming means getting through another day. Sometimes merely laying in bed breathing, other days blessed to be able to get out- but we never know which day we're going to get.

I guess that wasn't very quick, it also wasn't very detailed, but it's what came to mind tonight. I recently read if you want to be a writer you have to write. It's obvious but often times ignored. So, I wrote, and I hope this helps someone out there better understand these conditions. I am very glad I don't have cancer, but what I do have isn't any better.

I know October is breast cancer awareness month. Everyone knows that. But did you know October is also Dysautonomia awareness month? Please do what you can to help all of us who suffer from it. Just pass this on. Or visit this website to learn more-
http://www.dysautonomiainternational.org/page.php?ID=34

Thank you and God bless.

Prayer request for a scary situation

Today starts Dysautonomia Awareness Month. I will make a post to explain that, but for now I just have a quick update with prayer request.

If you've been following along, you know I've recently added Lyme Disease and Bartonella to my list of diagnoses. Treatment started about 3 weeks ago with the sudden onset of horrible symptoms, but there was an additional medication added just this past Monday. Since then, I've been affected mentally/emotionally. My mood has been very different- very easily agitated, very impatient, short fuse, angry but then also easily emotional, moments of anxiety/jittery, and then sometimes sparks of feeling like I can do many things at once and take on the world. It's scary and I don't like it one bit. This isn't normal me. The only way I've been mentally affected in the past has been with short term memory issues, word recall and just overall brain fog. I can handle that. This, not so much.

Here's the thing. We can't know for certain what is causing this. Is it "lyme rage" as they call it, a symptom of lyme? Is it the bartonella? Is is the herxing- which is when the lyme and/or bartonella are being killed off and it causes increased symptoms? Or is it what is listed as a serious side effect to this medication? Or the other medication? My thought is it's from this medication-whether be a side effect or a die off effect of the bartonella I am not sure.

I've already spoken with my doctor and he is aware of this. Today I'm not taking this med. Tomorrow we will start again with one a day instead of two a day. He said if my mood gets normal and stays that way for a week we can stay on this. If not, we have to come off of this, and try a new med.

As much as I want nothing to do with this med, I do want it to work and be able to tolerate what it does to me. Not only because it was expensive but because every new medication I have to take causes a new risk, and there are already too many medications out there that I cannot tolerate.

The whole thing is pretty scary. To feel like you don't have much control over your own mind. So please, if you will join me in prayer that whatever it is affecting me mentally and emotionally, and well physically too, it all just goes away. The lyme goes away, the bartonella goes away, as well as the MG, POTS, etc etc. Lord, just please make me healthy, whole and renewed in You. I can do this only because of You. Philippians 4:13. It's in Jesus' name I pray. Amen.

Thank you and God bless.

It's a good day

What if every day was good?
What if every day IS good?
What if you started looking at it in that way?

I have been fundraising for the MG Walk, which was yesterday. I had every intention on going and walking as far as I could. Then yesterday I woke up feeling very sick and weak. My family still attended, but I could not. Was it a bad day? Was it a good day? What determines that?

If I looked at only that aspect, of course I'd say, it was a bad day. But that would actually be fairly narrow minded of me. I have to look at the whole picture. All in all, it was a good day. Every day is a good day, even when it's a bad health day.

I'm not only alive, but I'm living. Maybe it's not how I imagined and definitely not how my friends and family would desire, but I'm living as best as I can given my situations. Look at the beauty around us. Nature. People. Animals. Love. We don't have to have any big plans to experience any of that. And thanks to technology, I can lay in bed and connect with others. Most importantly I can always connect with God. It's a good day.

Furthermore, here is something great. I can't remember the last time I used the wheel chair. I think, perhaps, it was in June at the last MG walk- the local one. (Yesterday's was national). But even then, I accomplished something huge that day. I walked a mile, an entire mile! June 2014 was the first time I was able to walk a mile in at least 2 years. My situation today is so much worse than my situation used to be. However, how I am today- mentally/emotionally/spiritually is so much better than I used to be. It's a good day.

I have Myasthenia Gravis, POTS/Dysautonomia, Lyme Disease, Bartonella, Chronic EBV, Candida, Adrenal Fatigue, an immune deficiency, a blood clot disorder, scoliosis/back problems, gi problems and more. But....

I have a home, family, friends, food, clothing, an education, entertainment and most importantly God. And with God alone, I have it all. So... every day is a good day, because every day is a gift from God. Treat each day as a gift, as a blessing, see it with a positive attitude, give your life a positive outlook. We can't control some of the situations we are placed within, but we can control what we do with it. Make it a good day.

When I was 20 years old...

You can read the my story page to hear how it all started, or so we think/thought. There may be a missing part in there. That missing part was about 10 years ago, or about 5 years before I suspected it all started.

Back in college, I remember going to the doctor for a bullseye like rash, can't remember if I had any symptoms. I remember the doctor mentioning lyme, and I remember taking medicine. But then I got better, or so I thought, and carried on with life until fully getting sick and declining many years later.

This past Friday I saw an LLMD- a doctor specialized in lyme. The problem is these doctors are few and far between. The bigger problem is they don't take insurance. The politics and such behind treating lyme properly is ridiculous. So anyways, made a little trip to Indiana to go see this new doctor. He spent 2 hours with me- discussing my history, my current symptoms, examined me and then going over a treatment plan.

He has no doubt in his mind I have Lyme Disease, but there is more to it. He believes my lyme from college never was treated properly. So my past lyme kind of just hung out in my body for many years, until I got sick in 2010 and then I felt more symptoms of it, and now with this new case of lyme it hit me much harder. In addition to lyme, he strongly believes I have bartonella. That is another tick-born illness that often comes along with lyme.

So his plan is this: He is upping the dosage of the antibiotic I am currently on to the proper dosage. This treats the current lyme and half tackles the bartonella. He is also adding a second medication that will tackle the rest of the bartonella. In a few weeks, if I am handling these meds ok, he will be adding a third medication. The third medication will basically reopen the old case of lyme so that the first medication can try to rid it from my body. Lastly, the fourth medication is the other one I'm already on but he is increasing the dosage on that as well. He expects me to be on all of these through December.

In addition to the pharmaceutical side, there is a more alternative side, the side I of course prefer. Fortunately, I don't have to make many changes there because I'm doing just about everything he suggested in regards to what I eat, small amounts of exercise as I am able to, and supplements to ease this process and help my body recover.

I can't even remember what it's like to feel healthy. I have to now take 20 pills a day (7 prescription + 12 supplements + 1 OTC). 20! But my newest doctor thinks he can get me close to feeling healthy again, and for once I somewhat believe him. I will still have Myasthenia Gravis, that is a for sure separate diagnosis. I will still have many of the other diagnoses as well. But this doctor's thinking is that IF lyme was the absolute root cause/beginning and we successfully treat the lyme, everything else will most likely improve. That would be an absolute dream come true.

And so, prayers please- for successful treatment, my body, especially my liver, to tolerate all of these meds, no further complications or worsening of symptoms/not flaring my MG or POTS, and better health in the not so distant future.

In the mean time, I now get to promote awareness on yet another illness, make that two: lyme and bartonella. I officially dislike ticks.

A wonderful update

Thank you so much to everyone who has been praying for me. Lyme kicked me down so very hard. But with your prayers, and these antibiotics, I am doing much better right now and just had an enjoyable weekend. So here is an update for anyone following:

The antibiotics took about 3 days to start working, and then gradual improvement, but by this past Saturday after taking the antibiotics for about 8 days, I started feeling not only back to "my normal" but even slightly better!

In regards to the lyme only, I'm still somewhat stiff in my neck, shoulders and back and the pain still comes and goes but isn't nearly as intense. My temperature is still off but minus the chills, so that's pretty much back to "normal." Fatigue has extremely improved! So much to the point that I'm slightly shocked at what I was able to do these past few days.

Over the weekend, I not only went to a wedding but I wore heels- HEELS! And I danced! Anyone healthy will be like huh? Anyone with chronic illness will be like WHOA! Because yes, whoa it is. That's huge for me. And then the next couple days I was able to play bocci ball, basketball and hit golf balls. Whoa again. Now there was a lot of rest in there: bocci ball needed an intermission just to get through one game, basketball consisted of shooting maybe 5 shots and I only hit about 5 golf balls all of which were the little plastic ones to practice with. But regardless, I did it and that's more than I can normally do.

Today I'm feeling the effects of it and I'm resting. Also today I had to take the 2nd medication, which I have to take once a week. That is making my MG and POTS flare, as it did last week also. But I am so very thankful for this past weekend, so very thankful for the antibiotics and so very thankful for your prayers.

I'm against medication in general, but sometimes it is warranted. This was one of those cases and fortunately, I believe only because of prayer, I did not have any side effects from this one. Friday I will be seeing an LLMD- doctors who specialize in lyme treatment. He will most likely test for any co-infections of tick born illnesses and let me know if I'm on the right treatment plan. I'm doing this so we don't risk this lyme case turning chronic if it hasn't already. So if you will please pray about that I would appreciate it.

Ever since I first got sick in 2010, I've just wanted to be healthy again. But things like this lyme disease make me realize it can always get worse, which also opens my eyes to how much I truly am blessed with. With the decline due to lyme, I also experienced the feeling of improvement that came with it when the antibiotics kicked in. That was a great feeling. To feel you are getting through it. And each and every day we all are- maybe it's your health, maybe it's your job, maybe it's a family/marriage situation, maybe it's just life in general. But without the lows how would you be able to experience the highs? That's why we can't focus on the situation but the only One who can and will get us through it.

Praising God again for the good times and the bad. Praising God for taking my health situation and turning it into something greater. Praising God for the "simple" things in like like this blog which allows me to turn a passion into a purpose. Thanks for reading. God bless.

Praising God for my bad news

Quick summary for anyone not following every post-
Tuesday I had a bite like mark on my arm. This developed into a bullseye rash. Along with it came extreme stiffness, severe fatigue, muscle and joint pain and weakness, chills and headache... unlike my "normal" symptoms. Thursday I went to the doctor. I suspected lyme disease but my doctor claimed lyme never happens here, probably just an infection. He put me on 2 weeks antibiotics and ran some blood tests to check for lyme.

Note- lyme often will not show positive in a blood test even if you have it. If it does happen to show positive it almost always will not show for at least 4-6 weeks after infected.

2 weeks of antibiotics for lyme disease, especially with as severe as my symptoms were and progressing so quickly, would not nearly be enough. There is a huge problem of regular md's not being knowledgeable in lyme, refusing lyme as a possibility, not treating lyme properly. If you are interested in knowing more, watch this video. It's as long as a movie but it's worth it to learn more.

I very quickly dove into research on lyme and reaching out to the lyme community. I did this because of my history of medical problems and the treatment or lack there of that I received. I knew treatment for lyme had to be quick and aggressive. If it's not quick and aggressive, and even sometimes if it is, lyme can turn into a chronic disabling condition- even worse than MG or POTS.

I research everything because I can no longer trust doctors. I can no longer trust doctors because of going 2.5 years undiagnosed with MG and 3.5 years undiagnosed with POTS. During those years I was misdiagnosed more times than I could count, put on more inappropriate medications than I could count. Those medications caused additional problems, resulting in hospital stays and further decline. I research because I have to be my own advocate. No one else can feel what's going on inside my body. I've come to learn my body very well and I have to look after it the best I can. We're only given one.

So anyways, today I receive a call from the nurse saying my blood tests results are in. Now all this time this may sound crazy, but I have been praying to God if I do in fact have lyme disease please Lord give me a positive blood test so the doctor will properly treat me. Well, hallelujah Praise the Lord!! I have a positive blood test!!! How that is possible just two days after symptoms started, I have no idea other than the power of prayer. So my doctor is now changing my 2 week treatment to 6 weeks. Normally I would say I hate medication and want nothing to do with it, but this is something needing to be aggressively attacked to try to rid it from my body.

Still there are concerns. My doctor will not put me on more than 2 pills a day. 3-4 is recommended. He also still isn't knowledgeable in it. My doctor didn't test for any co-infections that ticks can also give you. Those can be just as serious as well as sometimes fatal. I should find an LLMD- lyme literate md- specialized in treating lyme properly, but they almost never take insurance. Again its back to politics and such in the medical industry. Watch that video. So do I take these 6 weeks and hope that's enough and that I have no co-infections? Or do I pay out of pocket, which could be a whole heck of a lot, to go see an LLMD and do more testing? I guess I'll keep praying about it.

The good news is the lyme community tells me I'm one of the "lucky" ones... I actually got a rash, noticed the rash, saw the doctor while I had the rash, the doctor acknowledged lyme as a possibility, my blood test came back positive. I was told those things rarely ever happen especially not all of them together. So Praise God!

This has kicked my butt pretty hard. This fatigue is absolutely horrible. And it has set off my MG and POTS in a bad flare. It's actually making me appreciate having "just" MG, POTS, etc. etc. etc. But now I get to add Lyme officially to that list. All these things try to take me down on a daily basis. Sometimes it's hard just to sit up. I feel so under attack. But I just continue to rebuke the devil in Jesus' name and commit my life to Christ. I know I probably wouldn't be in as deep of a relationship with God as I am now had I been healthy, so in that regard these illnesses are a gift. Praise God in ALL things, not just what we see as good things. So I'm praising God for my bad news, not only because it resulted in better treatment, but because God is always good. I just ask that He please help me through this and out of it so I may live a better quality of life while remaining close to Him.

Thanks for reading, thanks for learning, and thanks for considering a donation to the MG walk I will be doing later this month :)

God bless.

The challenge in having a chronic illness

So I now have suspected lyme disease. Very slim chance I don't considering the bullseye rash and my progressing symptoms and debilitating weakness. This weakness/fatigue is outrageous. I thought MG and POTS were bad. Goodness this is so much worse even. I very much hope it gets better the more meds I get in me to treat this. But I'm concerned because I'm not being treated properly. I'm not being treated properly because my doctor doesn't get it.

My doctor claimed there have been no cases of lyme in IL in the past 12 years. I've already talked to 4 people in the past 24 hours who have had lyme in IL. My doctor ran the blood test yesterday. Do any research and you will find that test is highly unlikely to come back positive, but I could still most definitely have lyme. My doctor claimed 2 weeks on this med would work. Do any research and find I need a higher dosage for at least 6 weeks to even have a chance of this not turning into chronic lyme disease.

Chronic lyme disease would mean this extreme fatigue doesn't go away for good. Fatigue as in I'm not sure if I can sit up from bed in the morning. Once I have enough energy and make it downstairs, I'm not sure if I can finish getting my simple breakfast. A few steps and I feel like I have the worst case of mono. The stiffness doesn't go away. The muscle weakness and pain doesn't go away. The joint pain and weakness doesn't go away. The chills and fever return again and again. The stomach like flu symptoms come back. It can turn worse. It can add additional more serious symptoms, neurological, vision impairment, heart trouble, etc. It can kill you.

I say this because I speak the truth, I always speak the truth. And I feel it is so incredibly important to do so and to get awareness out there. Where do you get your information from? The regular MD's? The media? Friends or family who are healthy for the most part or have a common/known about health condition? Please think outside the box.

The medical industry is big on treating cancer, treating heart disease, treating COPD, treating diabetes. The medical industry fails on successfully treating or even acknowledging syndromes or diseases that don't show up on tests, that have to do with the autoimmune system, that treatment doesn't succeed on, that there is no clear live or die. They think they know more and sometimes they do. But sometimes they really don't. We are the ones living this every second of every day. We are the ones focusing in one on or a few specific diseases/conditions, talking to others who have it, learning what our individual bodies respond to and don't respond to. They read what is in a medical book based off of testing on a small percentage of patients who have something. We live it.

We with some chronic illnesses fall into a hole. We fall deep into this hole that doctors don't care about for the most part. Other than the medical industry being a money making industry, I don't know the true reason why we aren't treated. But I do believe the majority of regular doctors don't fully understand or acknowledge chronic illness such as the ones I have. That is sooo very hard for us. It is so stressful. Stressful to have to be told it's just anxiety, stressful to be told it can't be this or that, stressful to be told its not a positive blood test so there is no way you have it, stressful to not be treated or treated properly, stressful to be dismissed, brushed off or dropped as a patient, stressful to be judged and harshly criticized, stressful for no one to believe you, and stressful to deal with being jailed inside your own body each and every day.

Family and friends please get behind us and support us if you haven't already. Please don't question what we are going through or argue us on it. Please don't believe a doctor or another friend but not believe us, especially if you haven't done the research. We have it hard enough. More than anything we need support.

Myasthenia Gravis is a real disabling disease.
POTS/dysautonomia is a real disabling condition.
Candida is a real disabling illness.
Chronic Epstein Barr Virus is a real disabling illness.
Adrenal Fatigue/Insufficiency is a real disabling condition.
Lyme Disease and/or Chronic Lyme Disease are real disabling diseases.

I have all of them. And then I have the stress of people not believing me. I'm doing everything I can to improve or maintain my quality of life, to spread awareness and to stay positive. So if you want to disagree, please first do the amount of extensive research I have done, take a test drive in my body, and then tell me your argument. But better yet, just believe me and provide the support I need. I really do need it. I need you. Thank you.

Side note, the MG Walk Fundraiser is this month. Please consider making a donation. Funds go towards helping MG patients such as myself, with better treatments, improving quality of life and searching for a cure. Your support is much appreciated by myself and everyone with MG!

God bless.