Tuesday, December 25, 2012

Merry Christmas!

I just wanted to say Merry Christmas to all of my readers. This Christmas has a special place in my heart...This year I finally after a lifetime of "church going", understand and know what it means to believe in Jesus and the Good news of the Gospel. WOW!

For many people, Christmas isn't even a joyous time anymore. Let's just enjoy the things we have and enjoy that Christ is our Savior. Even with family members no longer here with us, Christ gives us strength, hope, peace and rest to do anything. To stand bold in the face of adversary. To have hope even when things don't feel hopeful at all. To have peace and feel rest when life is really causing a lot of stress.

We make Christmas whatever WE want to make it. Don't allow other people's Grinch or materialistic mentalities start to make an affect on your reasons for celebrating. I give hugs and prayers to everyone reading. That this year be filled with healing, love, hope and many surprises.

Sunday, December 23, 2012

Incurable? ...Multiple Sclerosis Healed!

This is a must see healing testimony. It is a bit long, but well worth the watch!

What she says from 15:54-21:20 just blew me away. If you are sick, take this to heart and allow God to change what it is you feel about sickness.

Friday, December 14, 2012

Remember I Don't Give Health Advice!

Just as a friendly reminder, I will not answer any of your emails in regards to health advice or information. I won't even entertain or enable the ideas anymore though.

Here's the only advice I have to give.

The natural health, natural hormone community  is nothing but a culture and mindset of fear. You are made to fear everything on this planet. The water you drink, the air you breathe, the food you eat. There is always something "bad" that was just discovered that we have to avoid... Lots of experts, doctors and groups have bought into this mindset, so they think they are "helping" you by letting you know of all these dangers. They are mostly fearmongering and getting people to be afraid and scared. There's a lot of money to be made with people's fear. I know I spent tens of thousands of dollars on supplements, books, treatments etc. All of it was a waste and did nothing. My husband was in fact permanently injured by a supplement he took.

The Lord tells us not to be afraid. That includes living in this world, what we eat, what we drink and more.

I won't tell you what to do, but are you living in a mindset of fear everyday? I'm so done with it. I will live free with my trust in the Lord. I will use common sense, but I will no longer be an encyclopedia or an enabler for this mindset.

Praise the Lord for my transformation in these matters. He opened my eyes up to what was really going on in these communities. For many years, I was one of the enablers, one of the "I know it all's", but not anymore! :)

Saturday, November 24, 2012

God healed me of Addison's Disease!

I do have some exciting news I wanted to pass along to people. The title of the post probably gave it away already....haha! I had been keeping this to myself for many weeks and have only told a few people.  I wanted to know for sure what was going on.

Several weeks ago my husband and I went to Dr. Roger Sapp's Christ-centered healing meeting in Indiana. It was quite a journey for us to go, but we really wanted to!!

Some Christians believe that sickness glorifies God or has some sort of purpose, such as teach them a lesson or make them a better person. Others have misunderstood Paul's "thorn in the flesh" or the story of Job and then use those as reasons for why they are sick. I don't believe in any of those so I have been pursuing Jesus as my healer.

For more info on what I believe, you can also read my post,  It is God's Will To Heal to get a better understanding too.

At the meeting, we had a great time visiting with people and making some new friends. At first when I was being prayed for, I felt nothing at all. We prayed a few more times and just decided to let things ride out. Then I had some other people come over to pray for me. They asked what was wrong and I went through that whole mess..."what isn't wrong with me"...haha As I was being prayed for again, I felt a deep warmth within the core of my body, but it only lasted a short time. I did not think too much of it. That weekend we prayed for others and it was a great experience! One person, we later found out was totally healed of his heart condition. That was pretty awesome! Thank you Jesus!

On Monday the day after we got back, I realized I had forgotten to take my hydrocortisone. It scared me a bit, so I immediately took it. The next day, the same thing happened. I just forgot, but I decided I wouldn't take it unless I started to feel sick.

Usually when I forget to take my HC, things escalate within minutes or hours. It does not take long to know that low cortisol is setting in. First, I typically feel a bit off and my head hurts. Then I begin to get this nagging pain in my stomach or back. If it keeps going, then I will get chills and the pain will increase. This is usually when I begin to feel weak and incoherent and my husband would have to help me. If even more time went on, I would have severe nausea and then vomiting. I never let it get that far because that's adrenal crisis territory and that is serious business. You can go into a coma and die.

I wasn't experiencing any of those symptoms. I was being very cautious and keeping an eye on myself though. There were a few days I took 2.5mg because I was still a bit shocked that I did not need it anymore...hahah!

It has now been 6 weeks since that meeting. My heavenly Father healed me of Addison's Disease or adrenal insufficiency! I am no longer taking hydrocortisone when previously I could not wean myself off of it at all. I used to take anywhere from 15-20mg of HC on a daily basis. Many people in the chronic illness community can attest to this fact. :) I have hundreds if not thousands of posts on forums that confirm my need for hydrocortisone on various forums and groups.

There has been a few attempts over the years where I took it upon myself to try weaning down on my dose. It always ended up going really bad. Below I grabbed a few snippets from old blog posts to show you!

From my post, Ugh HC Weaning Isn't Going Well in September 2010:

"It's been another 10 days or so and my body cannot adjust to this lower dose of HC...I have moments of complete hearing loss in my ears for a few minutes at a time. I've been feeling sick to my stomach, almost flu-like without actually vomiting though and I've been having crazy hot flashes and chills....Yesterday and the day before I had to take more HC. I was sort of afraid that if I didn't I'd start going down the adrenal crisis path. Ugh. I just hate to admit defeat on this because I really don't want to have to take HC for the rest of my life. It's pretty frustrating."

The next day I gave up and started taking the full dose of HC again. 

From my post, Well that Didn't Work in May 2010:

"Going down to 15mg of HC was disastrous. It took me 1 day to realize that was a bad bad bad idea, so I'm back up to 17.5mg. I seem to do well here for now."

Going back and reading through all of that was amazing. Thank you Jesus, I was healed! There is simply no other explanation. Having been on steroids for more than 3 years, I should not have been able to go cold turkey like that any how, but I did! Over those 3 years I had tried SOO many times to come off of HC and it never worked. Just two weeks before this meeting, I tried to lower my dose and I could not do it at all...I immediately was sick.

I can't even tell you how incredibly happy I am about this. I no longer have to wear a medical alert bracelet. I always felt that thing marked me and it was awful. Thank you Jesus! I am set free!

Now I need POTS to leave my body in Jesus name and the world will never be the same. Watch out everybody! haha :) A healthy me, hasn't been around ever, so who knows what awesomeness will come out of it.

Update August 1 2013: I am still not taking HC. I continue to battle and stand for other healings, which have not come as easy.

Thursday, November 15, 2012

It is God's Will To Heal

Author's Edit (2016):
Sometimes it can be good to look back a few years and see how much God has changed you. This post reflects so much of what I no longer believe. This post demonstrates to me how you can become a parrot for another person's teaching and not even realize it. 

Since I've been involved in the chronic illness community for many years, I am friends with a lot of people who are sick. Many of them have been sick for 5, 10, 15, 30+ years. My way to give back to this community was always to do research and to make myself a guinea pig to see what supplements, detox programs or other things were beneficial to me. I thought if I could make a blog describing everything I had tried, once I found my cure, then I would be able to help lots of people. Many years went by and yet nothing ever restored me to where I could work again or feel normal. I told myself that it was only a matter of time, but nothing worked. In fact a lot of the things I did, set me back and made me and my husband only worse. Just take a quick look around here and you'll see what I mean...haha

In July 2012, I felt the Lord tell me to stop doing all the health theories and doctor hopping. I went from being a scientist, digging through my genetics, writing up theories and ideas on what might be causing my illness, and instead started reading my Bible and listening to the Lord. It was the biggest 180 degree change I've probably ever done in my life!

This has given me an unique perspective as a chronically ill born again Christian, seeking healing from the Lord. In this latest journey, I have learned that not all Christians believe in healing of the sick.

Some Christians believe their sickness is given by God because of something they did or that they need to be taught some lesson in life or need to be made more humble and thankful for what they have. Some even think it is God's will to keep them sick and that if the Lord wanted them healed, then they wouldn't still be sick. Unfortunately a lot of good people have been mightily deceived and do not have a good understanding of where sickness comes from.

My hope is that this post will help some get a better understanding that it is the Father's will to heal and it is ok to seek and desire healing.

Sunday, October 28, 2012

Eye, Be Healed in Jesus' Name!

A little over a week ago, I woke up with some scary things in my vision.

For years, I have had a lot of lights, sparks, negative and positive afterimages, visual snow, floaters, lights while blinking and more. For many years I didn't even know the things had names, so I just made my own descriptions up. ;)

This new thing was much different than everything else I had experienced before...

I had a grey spot just above my center vision where I could not see anything. Yet at the same time, my brain was trying to fill it in with information surrounding it. I could only see the extent of the "blindness" while looking at detailed objects like the edge of trim, wall or text . I could also tell if say, looking at facebook, the header where it is blue, looked gray to me instead. Colors are not quite right in the spot unless I am just looking at a white or black background.

What I see on the Amsler Grid
Since I've had a lot of lights before, I figure it would just go away like the hundreds of other times before it. A few hours went by, a day, 3 days...Oh uh! It was not going away, so...I decided I should probably called the doctors first thing Monday. After talking to a nurse the soonest they could see me was Thursday. I thought to myself, "Well sweet! That gives me a few days to pray for this thing!" If it's healed in the meantime, then I wouldn't have to worry about it anymore. haha!! My husband and I had been praying for my eye. I had been meditating about it. I had a friend pray for me too.

Well Thursday morning comes around and it is still there, so I go in. I really hate going to doctors. Every time I do, it is bound to make me upset because often times I'm treated pretty badly. But it is not just me. I am reminded my sister had a malignant brain tumor for over a year and no one took her seriously either!

We waited for almost 3 hours in the office.

The doc remembered me as having the weird eyes.

I wasn't sure if I should be happy he remembered me or not. Last time I was there, they never really came to any conclusions. I had some retinal traction or something like that and my retinas looked white, but they had no idea why I was seeing what I was seeing.

The first pass with the slit lamp exam, the eye doctor said he saw nothing except the few really big floaters in that eye. I told him I know for a fact it is not a floater and the spot was fixed. He was trying to tell me I was just seeing a floater.

He then examines my eye with me tilted back and he was directing the light in exactly the place where the blind spot was located in my vision. He took a few slow passes.

He starts off by saying he really doesn't see anything wrong. My heart just sank...I said that is great news of course but I have a blind spot. He goes on to tell me well he did see a "spot of hypopigmentation" in that area of the retina, but he did not know what it was but wasn't sure it could cause my issue. He said he had never seen this before and had no idea what it meant.

That's what I did not want to hear from this guy. That's exactly what he said 3 years ago and eventually I had a different doctor take a look at me. The different doctor was highly confused why I was being checked so often. He said everything was fine and that the retina was a bit shiny, but that it's benign (White without pressure) and told me I did not need to be seen again unless something came up.

So here we go again. Same deal. Doc has no idea what it is, yet he orders no further testing, does not refer me to go to another doc. He just told me to wait another 2 weeks...I feel like I'm reliving the same thing over again.

I have a hunch of what it might be and I tried to pass this along to the doctor, but was met with resistance from the nurse. She basically just yelled at me on the phone for a good 5 minutes. Telling me the internet is a "dangerous" place and that I was "questioning the doctor's training and experience". etc etc etc I prayed as she was yelling at me and just said, God please be with this woman who is taking her frustration out on me for something in her own life.

The good news is that the prognosis is typically good, but it varies for everyone. Bad thing is, with it being so rare (0.45 per 100,000 people), it seems like they really do not know.

For comparison- Addison's Disease is 1 per 100,000. POTS is 170 per 100,000.

At the moment, it looks like it is not something that will be permanent but only time will tell. Thank you Jesus it wasn't the first signs of MS. I was freaking out about the possibility because I have lots of MS symptoms that are quite similar to POTS. I still pray for this spot to be healed completely in Jesus' name and not progress any further.

I'm waiting on a few other health miracles right now, so I really don't want to see that list getting any longer. hahah! ;)

Monday, October 1, 2012

The Leaves Are Gorgeous This Year!

For the past few years, we have had pretty underwhelming fall foliage. This year however is shaping up to be quite amazing. Maybe if I am feeling up to it, I'll try to get some snapshots of the leaves in the area. They are simply beautiful. The bright reds and oranges are just...wow! No words can really describe how vibrant and beautiful they look.

Wednesday, September 26, 2012

Why Am I Still Sick? (From a Spiritual Perspective)

I am not a theology major nor do I have extensive knowledge on Bible verses, but today I wanted to write about being sick as a Christian, especially a Christian who believes in healing. I'm going out on a limb here! haha!

I know many do not believe that healings occur today. Well some believe it is possible, but it is not something that can be controlled or done consistently. Many believe it is all a scam. Some believe that healing is the work of Satan and that by being healed, he is tricking you. Others believe that once the disciples died, those miracles do not happen anymore or it is only by chance or some rare exception.

There is another group of people who say that healing still occurs today. These people are actively laying their hands on people in stores, malls and out on the streets.

I personally believe that healing occurs because of what Jesus did for me on the cross. He saved me from all sin and also took away my illness and sickness. I don't need to see videos or read testimonies of healings to know it to be true, but they are out there if you want to see them. I also know a woman who had POTS that was cured when a man layed his hands on her and prayed. It's been over a year now and she is still completely healed! Praise God!!

What becomes difficult is trying to understand why we all aren't healed instantly. I've had a few people lay hands on me, but nothing happened. I don't know why it happens the first time for some and doesn't for others. However I'm not about to start making excuses and questioning my faith.

Failures in healing are why people begin to build theologies around why God does and does not heal certain people. If you've been sick for an extended period of time, I'm sure you've heard things like this...

"You must have sin in your life"
"You must need to forgive someone"
"Your faith must not be very strong"
"You must have opened the wrong door"
"Satan has a hold of you"
"God must be angry at you"
"God must be teaching you a lesson"
"It's not your time to be healed"
"If God wanted it, then you would have been healed. God must want to keep you sick"

Being a sick Christian is tough...Many blame you for being sick.

All of the statements above are excuses. When a healing is seen, the church, rejoices and praises God (as they should). However when someone is not healed, it's much easier to blame and pass the problem off on the sick person. The church or ministry never has to feel uncomfortable about it.

The problem I have with this, is that the sick person is still sick. In addition to having to endure their sickness, now they are being told it is their fault? Huh?

Jesus did not make any excuses. He would have healed you, today. This very moment. 

Sadly, I find healthy people are usually the ones who go around saying these things to sick people. They have this belief that they have somehow been spared of sickness because of their faith. Therefore if someone has sickness, then they must have done something to bring it upon themselves. Sometimes bad stuff and accidents happen. Sometimes people are born with disease. Does it really matter how or why we became sick? Isn't all sickness equally bad?

Instead of having love and compassion for the sick person, people start to question the sick person's faith....This happens ALL THE TIME. There are entire websites dedicated to explaining all the reasons why people aren't healed...  By creating and having these elaborate theories for why it does not happen, I find it interesting that it must be happening often enough, that they have dedicated so much time to it. They don't have faith in the healings, therefore it does not happen...It's like a self-fulfilling prophecy.

These types of theologies can end up being dangerous and actually steer people away from God.

When everything is going fine, these people believe God is happy with them. However the moment something goes wrong, they get the idea they must have done something to anger God. These people begin to question God and their faith. "God if I was a faithful servant, why did you let my child die? Give me cancer?  Let my wife leave me? Make me lose my job?" The moment things get rough, people who believe in this kind of theology, believe it is God doing it to them.

That is why I reject all theologies like this. It is a slippery slope.

God is NOT in the business of giving us disease and making bad things happen to us. It is as if  the Devil and God have switched roles. If you believe that God is doing any of these things to teach you a lesson, then you have been deceived in my opinion. I used to be taught this and thought it was totally normal...hah!

If you build a theology where people with illness deserve it for some reason, then you go from being a person full of love and compassion, to a judging, self-righteous person based upon a self-written theology. :"You don't have enough faith". "You don't this. "You don't that". None of these reasons are based upon anything in the Bible. Websites like to pick and choose verses from the Bible, but I don't see anywhere where Jesus let someone suffer.

Jesus healed sickness from everyone. No exceptions were ever given in the Bible. Why are we expecting any less and making excuses? 

A great story in the Bible is in the Gospel of Matthew. When the disciples could not heal an epileptic boy, Jesus was angry and told them exactly why they could not cast it out. It was their faith.

Matthew 17: 14-20
17:14 When they came to the crowd, a man came to him, knelt before him, 17:15 and said, “Lord, have mercy on my son, because he is epileptic and suffers terribly, for he often falls into the fire and into the water. 17:16 I brought him to your disciples, but they were not able to heal him.” 17:17 Jesus answered, “You unbelieving and perverse generation! How much longer must I be with you? How much longer must I endure you? Bring him here to me.” 17:18 Then Jesus rebuked the demon and it came out of him, and the boy was healed from that moment. 17:19 Then the disciples came to Jesus privately and said, “Why couldn’t we cast it out?” 17:20 He told them, “It was because of your little faith. I tell you the truth, if you have faith the size of a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; nothing will be impossible for you.”

It is quite clear that Jesus did not blame the epileptic boy for not being healed. He blamed his own disciples for having little faith.

Perhaps this is why certain people or certain ministries see more healings than others. The idea of it being based upon the faith of those healing, would make sense.

Why am I still sick? I do not know. I know it is nothing I have or have not done. I will continue to seek prayer from those who are willing to pray for me. I have already been sick for at least 12 years of my life, it is time for this to go. Praise God when it does!!!

Monday, September 24, 2012

Debbie Downer for Being Sick of Being Sick?

Fall is definitely here! The leaves have already been changing! :) I woke up today and it was actually cold and I needed to get a jacket. :)  Usually I feel better in winter, but last winter was really rough on me. I got strep and then erythema nodosum....Ouch. I hope I do not have a repeat of that.

I am already noticing that my heart has been racing a lot more. I have been getting periods where it just takes off for no reason. It has me concerned but what can I do about it? It's not like I can flip a switch and be better... I have been getting worse and worse this year despite my efforts with supplements, natural treatments, detoxes and rx drugs. Nothing has been working...

In real life, I don't like to talk about my problems with people because no one wants to hear things like this...What's the point when there is no end in sight? It's not like there will be a cure for POTS in 5, 10, 15 or even 20 years. As I get sicker, it is becoming increasingly harder to cope with. Most people are only interested in hearing about illness for a short time, but when an illness has been going on for years, they don't really want to hear about it anymore. You are old news and annoying.

Because of that, Facebook and this blog are the only places where I can vent and talk about what I am feeling with complete honesty.

On FB the other day I was accused of no longer listening to God's word and that I must have stopped going to church because I was being a debbie downer in my posts...Huh?...This does not make any sense at all to me. I am NOT about to be condemned for feeling and living sick. I do not subscribe to any theology that blames sick people for being sick. God does not give us sickness to teach us lessons.

Some people really need to get a grip on themselves. You see someone hurting and in sickness and all you have to offer is condemnation and some lesson on the Devil? How about having some compassion, love or even offering to pray for them?

On FB, I usually post random things about health, cats, weather, God, songs, etc. The last few weeks I have been posting links to some interesting threads on DINET that I could relate to and I shared some stories for Invisible Illness week. I normally don't post about stuff like that, but I thought there were some good things out there. I like posting about the emotional struggles we face when one suffers from a chronic illness.

Oh and I've also shared this amazing KittenCam on Youtube. OH MY!! Check it out. You will be addicted. :)

One of my "debbie downer" status updates was written after going to Kohl's and suffering with terrible symptoms.

I really needed some jeans. I haven't bought a single pair of jeans for more than 3 years. We are going to a Christian healing meeting and conference coming up in October and I realized I did not have enough clothes to wear to a conference for 3 days...haha! Normally I wear the same clothes over and over again because I don't make public appearances very often and I'm not seeing the same people. I figured showing up in the same old, worn pants might be a bit weird.

I hate shopping because of my health problems. I can't even remember the last time I went to a mall. I think it's been about 3-4 years. The only shopping I do is grocery and necessity shopping like getting cat litter, cat food, prescriptions, toilet paper etc. You get the idea. I don't go on day long trips where I come home with bags and bags of jeans, shirts, shoes and other stuff. All that walking, stooping down, reaching up for items, standing in line is awful.

Before we got to Kohl's I looked online to see which pants might work, so I knew where to start... There was no way I could walk around Kohl's, trying everything on I could find, so I had to narrow it down to 2 or 3 styles. That's all my body can handle.

Trying on and putting on clothes has always been a major trigger for POTS. When I get dressed in the morning, it takes all of my effort not to collapse. It's not that my BP drops, but I feel like the life within me begins to fade away.

So I start trying on jeans and immediately knew this was not working out well. I felt terrible. My heart was in the 170's. I had to rest on one of their mannequin displays. ;) I had shortness of breath, began to tremble, shake, sweat profusely, felt wired and thirsty yet had to pee all at the same time... I could not do any fine motor movements at all. Texting on my phone was impossible. I kept smashing like 5 keys together. Everything was so unsteady. The first 2 pairs of pants I had tried on were a bust, so I had to keep pushing through and looking. I started to slouch, sighed a lot and was even dragging my feet as I walked. I looked sweaty in the face as if I had been running a marathon. I have to believe marathon runners feel better than this because I don't think they would keep doing them otherwise! HAHA!

I finally did find pants that I liked, but I was too sick to try them on and compare, so I just bought them. I got home and realize I probably needed to try the smaller size and compare...NOO I have to go back now!?! I was considering of bringing my video camera along next time to show people how much I suffer while trying to do normal things. I dunno if Kohl's would allow it, but I think I'm gonna try.

So after that entire experience, yes I made a FB status update that said,
"I went to Kohls today to get some jeans and I felt terrible. Made me realize just how sick I really am. :("

I can't pretend I don't have POTS! When someone suggests something along those lines, I have to assume they don't believe you are really that sick. Doesn't that already mean I'm doing a good job at pretending? lol I also feel like you cannot possible be feeling compassion for what I am going through. No one would ever tell someone with cancer to pretend they did not have cancer. No one would ever tell a blind person to just think more positively, so he might be able to see! That is completely absurd....

After coming home from Kohl's, I was wrecked for the day. I had massive head pressure and a headache that did not go away until I went to bed that night.

One good thing did come out of it, as I was walking around, feeling dreadful, I started to have flashbacks to times in my youth where I felt the same exact way. It was as if I was being reminded that I have been sick for a very long time as early as age 5. My mom used to do day long trips to malls and I hated it. I would lie down on the ground, cry, scream and throw fits.  I thought I was just a brat, but walking around Kohl's the other day, I knew it was just POTS showing itself...

I'm not entirely sure where to leave this post, but for the past 7 years I have been doing the mental gymnastics to keep myself going. The 5 years before that, that I graduated from high school, went to college and worked full time. I'm not a quitter. I'm not someone who just gives up and pouts. The reason I'm not in a wheelchair or lying around in bed all day looking more sick is because of my willpower.  I struggle with POTS in every aspect of my life and have made as much good out of it as I can. Is it wrong to want more and be upset with where I am right now? I don't think so.

For 12 years doctors have told me I was faking, crazy, lazy, just anxious,"too stressed", that I needed to get a job, was a drug addict, needed to just start having babies and all of these horrible things. To then have a friend tell me that I was letting the Devil win by having debbie downer posts, it is really not very caring or compassionate at all. I can't just pretend POTS away...Don't you think I would have done that, oh I dunno, like 5 years ago when I started this blog? lol

My hope for healing and recovery is with God. I know that he is my Healer. He has already shown me with what happened with my cousin was not my fault. God is healing me right now in ways I cannot even explain here. I believe that the physical healing will happen too. And when God finally takes this illness away from me, then Glory be to Him. No one will be able to stop me, from shouting it from the rooftops!

Thursday, September 20, 2012

Healing the Wounds of the Past

This has definitely been the hardest blog post I've ever written. I've been tossing it around for at least a few days now. What I'm about to write is very personal!

First though I need to write some backstory to what has been going on in my life recently.

The past few months have been quite an interesting journey and I have made 180 degree change in what I do. As many know, I have stopped focusing on health information. I took pride in what I have done and the information I gathered together, but it was becoming a negative influence on my life. By always coming up with new theories, new tests to get done, new concepts to ponder and new medicines and supplements to try, it was a way for me to feel like I was in control of my life and my illness. I am not in control of this. When one did not work, I just moved on to the next, then the next and the next. There are so many theories, tests and supplements out there, I could have literally watched my entire life pass by jumping from theory to theory, supplement to supplement. It was like I had something to prove by "figuring it out".

Of course consciously, I had no idea I was doing this at the time. I woke up one day and had this distinct impression that I needed to stop and needed to start paying attention to what was going on around me.

And so I did just that. I left all Facebook health groups. I stopped posting to forums. Most importantly I stopped discussing theories with people. This is the big one for me...It was not easy at first. I felt out of control. I felt scared. I caved in a few times. I even had resistance from people. I had people I thought were my friends, tell me I was giving up and all of this ridiculous stuff. I knew I needed to just walk away at least for a little while and try to find myself. 

I started to explore a personal relationship with God. I have always believed in some sort of God but did not really understand what Jesus did or why he had to die...But in June 2012 I "officially" accepted Jesus as my Lord and Savior, was water baptized and started reaching out and praying to God and asking him for clarity and knowledge. "Father, tell me more about you. Show me more of You in me." 

I had never prayed like this before...Things inside of me started to change!

At the end of July, the sudden death of my aunt forced me to face events from my past that hurt me very much. I had to look to God for guidance because I did not have the strength on my own to face it. For me, it's always been easier to try to ignore the thoughts, emotions and images than to feel them, or deal with them, but unfortunately that wasn't an option this time around. I had to make a choice. 
Well I chose to begin healing some of the deepest, darkest wounds of my past. These are emotional wounds that I thought I would take to my grave. In over 11 years time, I never told anyone except my husband. Not a single friend knew about it, nor did any of my family members up until a few weeks ago.

I had held these pains deep inside of me for so long because I never fully understood what had happened to me...The emotions I felt were so mixed. I was confused, scared, lost, afraid, unsure, mad and full of shame and sorrow. For those 11 years, I took responsibility for what happened. I thought it was my fault and that I should have known better because I was old enough to know better. I told myself that I was a dirty, gross and a terrible person, so of course I did not want to tell anyone.

I was scared of what might happen if the truth came out.

One morning, only several weeks ago, I started to look online and thanks to amazing people out there willing to share their experiences, I found incest survivors who thought and said the same exact things as me. I could relate to these people and then it all hit me...All of these emotions, thoughts and ideas in my head, were sadly very normal for someone who was a victim of incest. This was huge for me. This was groundbreaking. This was liberating! My first thoughts were...Wow is that what happened to me? That was abuse?

For years, I told myself it wasn't abuse and fought within myself try to make sense of it.

I know that might sound really ridiculous to people who have not gone through it. However whenever it is a family member you trusted, it makes things extremely difficult to process. I always thought if it had been a complete stranger, then it would have been easier to deal with.

Anyone who knows me in real life can attest to the dramatic changes that occurred during this time.  I behaved so erratically. I starved myself nearly to the point of death, but I did so to feel in control. I would burn my arms with needles and knives warmed under a flame to make my skin singe, just so I could feel something. I collapsed at an amusement park due to starving myself and hoped that I wouldn't live just to end the suffering. I abused ephedra and other supplements hoping they would kill me in the process. I started wearing chains and black clothes hoping to scare people away from me. I had nervous breakdowns in the middle of school and I pushed everyone I knew as far away as possible. I hated the very person I saw in the mirror. I started to become involved with people who were negative influences and dated as many people as I could to "bury" the past because my innocence had been stolen. Somehow I thought I could find it again.

In my senior year of high school, I stopped wearing black clothes and chains to look more like a normal person...But inside of me, the pain raged on. It continued on into college and I made bad decisions because I felt unworthy of being loved and happy. I put myself into situations where people could take advantage of me. Then I would look back in shame for what I had done. It was a vicious cycle.

By the grace of God, I lived through these years of really dark times...All of these pains, emotions, thoughts and moments will be hard to heal from, but it can only begin by finally breaking the silence.

For years, I hated everything to do with love. I did not believe in it nor did I really want it. All of the pain that had been done to me was by someone who confessed his "love" towards me. This kind of manipulation really messed with my head and I even began feeling empathy towards my abuser. After all if this was out of love, then he would not have meant to hurt me and I must have misunderstood or wanted it. I could go on and on and on with the weird thinking....It were these manipulated thoughts and feelings that make the whole situation much worse and why I struggled.

Recently, with my aunt dying, I knew it was going to bring a lot of this back up to the surface. I knew it was going to give this person a good excuse to try to get back into my life and well I was right. When he finally tried contacting me, I was terrified. I got on my knees crying and prayed to God to help me through this. I did not know what to do from here and needed guidance, peace and encouragement. I felt so out of control and terrified.

After praying that Saturday morning with tears streaming down my face, God told me it was time to come out of hiding and to reclaim myself. I never had any intentions of ever telling anyone and I had even planned out putting all of this in my will when I died. But now the truth is out there and all of those years of fearing what might happen if I did tell, it simply did not occur. The sky did not fall and I'm still here! Even though it was a really tough thing to tell my mom, it ended up being the most terrifying yet liberating conversation ever. Since my abuser is still alive, I also felt like I had to warn others to keep my little cousins safe.

I have written all of this, not to get people's pity but mostly to bring awareness to the fact that incest and sexual abuse is commonplace. My mom and dad did everything right to protect me and my siblings from strangers, but the damage was done by someone within our own family.

Despite the things that happen to us in our lives, we still choose what we make of it and who we become. We can either let our pains and experiences take us over or we can accept them for what they are and make the best out of life. I still have healing to do and even though all of this is part of me, I am not that same broken, beaten down naive girl today. I will never be able to be around this family member again because I know without any doubt this person would try to harm me again if given the chance.

I know God will take this all away from me and heal me through this. I have been told by several prophetic people that they see my hurt of the past and that God will continue to reach into my heart and heal me. It has not been a quick, overnight heal, but it is slowly happening. There are still some subtle issues I need to work out, but overall I am doing so much better now that it is out in the open and no longer burning a hole in my heart.

Monday, September 17, 2012

Help Out My Nephew! Cub Scout Fundraiser

I don't think I've ever posted something like this before on my blog. I know my viewership has gone done a lot since I've change the format of things around here, but I'm hoping maybe a few of you can help out.

My nephew, Noah is in Cub scouts and I sadly cannot afford a single thing on this website to help him out. I'd be ecstatic if any of you could buy one of the tasty food items to help him out. I've been drooling over the chocolate covered pretzels, but those aren't gluten free...lol Things are a bit pricey, but most of it goes directly back to the Cub Scout Troop, so you are mostly just making a donation and getting a food item in exchange. ;)

Both my sister and I have had health problems since a young age. Only 4 months after giving birth to Noah, my sister began experiencing severe headaches. 10 months later, she was diagnosed with a malignant brain tumor at age 25 and the prognosis was bad. My nephew was only 1 years old at the time...I thought my nephew was not going to have a mom. It was really that scary, but she fought on and praise God the surgery was successful and she is still with us today, more than 5 years later!However, to say that things have been rough for both of them is an understatement. She is a single mom, living with my parents and could use your help!

You have to go through this link in order for my nephew to get credit. At the top of the page it should say, "You are supporting: Scout Noah D". If anyone is having trouble with this, please comment below and I can try to help out so we make sure he gets credit for any sale. If you can't afford anything, then that's totally ok! Try to pass the link along to a friend. Cub Scout stuff can get expensive, but it's such a great way for him to meet other kids and do normal boy things! :)

Here's the long link for copy/pasting purposes.

Again, I don't normally flat out ask for stuff like this, but I want to help my sister out! Thanks everyone.

As for me, I'm currently writing up a big blog post. Not sure if I'll have the courage to actually publish it, but we will see. It is extremely personal and will be a shocker to most of my readers.

Thursday, August 9, 2012

23andMe $50 Off Coupon Code (Expires Aug. 12)

I told people I'd let them know if 23andme ever did a sale, so as promised here we go!! Today I got an email giving $50 off, so that makes the kit out to $249 plus shipping. This code expires 11:59PM PDT, Sunday August 12, 2012.

The coupon code is: 

There is no limit to the number of times the code can be used, so please feel free to pass this along to your own families, friends, co-workers. The more people we get tested at 23andme the more potential cousins we all get, so it's a win win for all of us!

Also this actually isn't too bad of a deal at all. It will only end up being about $40 more than what I paid when they used to do the $99 plus monthly subscription fee. In the long run, that's pretty negligible, so it's an excellent time to test family members we have all been putting off.

23andme was a Christmas gift from my mom (I asked her for it) and it has been really good for me. Using the different 3rd party tools available, it has helped me get some insight in my chronic health issues.

Monday, August 6, 2012

Getting Our House Ready

For a healthy couple, getting a house ready to sell is a lot of work. It involves a lot of lifting, fixing, cleaning and going through stuff to toss out.

For a chronically ill couple, getting a house ready to sell is nearly impossible. We wake up feeling tired, nauseous, weak and plain terrible and we didn't even do anything the day before.

There are things that I should have done about 5 years ago, but my poor health has kept me from doing it. I never painted the hallway or the landing at the top of the stairs. Then there's the trim my lovely Vegas has taken his claws to that needs completely repaired. Then the overgrown shrubs, trees and weeds outside. I can't even begin to think about how that is going to get done.

These are things most normal couples take for granted. They can just go outside and do a nice day of hardwork, feel a little tired, come in, make dinner and feel happy about their accomplishment. My husband and I on the other hand, we take 2 steps outside and immediately give up. He feels dizzy, weak and my heart rate is 170. For years there was no way for us to even cut our grass so we had to hire a company to do it for us. Now with money in the negative, this has to come to an end.

We have to move, but how do you move when you feel too sick to move? Catch 22.

Thursday, August 2, 2012

When Things Don't Go As Expected

On Monday morning I had to get up early and go to my cardiologist for a 3 month check up to see how I was doing.

I was only running on a few hours of sleep because I've been staying up later and later and later at night. This is just something I have always done. I think because I usually feel better at night.

Well I was in the waiting room when my sister text'd me that my aunt died suddenly sometime earlier this morning.... Ugh. My aunt was only 65 years and died from sudden cardiac arrest. Meanwhile I'm sitting in the cardiologist's waiting room.

I talked to her on the phone probably about a year ago because she started to get a rapid heart rates, which I believe was SVT and Afib. These types of arrhythmia are dangerous for this very reason. It can send you into cardiac arrest... My high heart rates are sinus tachycardia which docs say is not serious.

I don't really have too much to say about it. It is very sad that she died and it was so sudden. With the weather being so hot though, I am unable to travel down to her funeral.

My uncle died suddenly from a heart attack many years ago. It really shook the family much like I think her death will too. She was a very caring, laid back, easy going person. She will definitely be missed!

Rest in Peace.

Portsmouth, VA - Ida Marie Hummel, 65, died July 30, 2012. A native of Pennsylvania, she was predeceased by her husband, Michael Donald Hummel; sister, Mary Louise Huber; and brother, the Rev. John R. Huber. Mrs. Hummel was a retired Navy Chief and Vietnam veteran. She later worked at Maryview Medical Center, Portsmouth General Hospital and the Naval Medical Center, Portsmouth. She was a member of St. Paul's Catholic Church.

A devoted mother and grandmother, she is survived by two sons, Michael Hummel and wife Carolina and John Hummel and wife Alisha; one sister, Rita Dobson and husband Gary; three brothers, Lawrence J. Huber and wife Rose Marie, Thomas R. Huber and wife Karen, and Robert C. Huber and wife Carol; and four grandchildren, Isabella, Madison, Ellie-Anna and, Annie Hughes.

A funeral service will be held on Saturday, Aug. 4, at 1 p.m. in St. Paul's Catholic Church by the Rev. Christopher Hess. The family will receive friends at Sturtevant Funeral Home, Portsmouth Blvd. Chapel on Friday from 7-8:30 p.m. www.SturtevantFuneralHome.com

Friday, July 27, 2012

New Blog URL: No More Adrenal Nonsense

I have hated the URL of my blog for many years, so today I changed it. I broke thousands upon thousands of links to my blog. Oh well. Out with the old, in with the new.

My blog went from


*drum roll*


Much better! I feel like I can breathe again and talk about what I want without that stupid URL causing people to make assumptions about my site. Be sure to update your links/bookmarks!

If your links are broken, simply add danachronicallyliving.blogspot.com to the beginning of any link and it will work.

If you see broken links on the new website because I linked to an old post of mine, please let me know. I don't plan on going post by post fixing these, so as you find them, I'd love to know.

A Storm With a Meaning

There was a crazy storm yesterday in this area earlier in the day. Even though the lightning was so bright and close (I saw a telephone get struck) we got through it without losing power or anything. Then randomly at around 7:30PM, there was a very sudden "out of no where" lightning strike somewhere fairly close because the thunder that came afterward was only a second or 2 later. As the lightning struck, we realized our internet went out... Uh oh. It is not a good sign when that happens. I called up our local ISP and they said there were no reported outages in this area. Uh oh. Again not a good sign. We called later hoping, they just did not get any reports in and once again, no reported outages, but they saw a TON of people in this area were offline.  Hmmm that actually gave me hope.

So we scheduled an appointment for a tech to come out today from 2PM onward. It was an on call tech, so they said he operates on 8 hour windows. Most people would be ticked off by this, but I certainly didn't care. It's not like I have a busy life and I'm never home. haha!

Thursday, July 26, 2012

When the Protocol or Theory Is More Important

This is going to be a deep post and fair warning, it might be upsetting to some if they can relate to some of the things I'm about to describe. Before I get to the heart of the matter though, I have to give some backstory to give people, who aren't familiar with my story, an understanding of where I am coming from.

As I approach the 5 year anniversary of this blog and 12 year anniversary of suffering from POTS, I look back and admit I have not made nearly as much progress with my health as I had hoped.

So I ask myself, what went wrong?

Well I realize I was pretty naive and misinformed when I started tackling my health problems. I thought I knew it all. I thought it was going to be simple and that as long as I "stuck with it" I'd eventually find my magic bullet.

Is there a magic bullet? At this point in time, I really do not know. What I do know is that for my POTS, it is not a simple thing fixed with some supplements, salt and drinking more water. With everything I have tried up until this point, I'm operating on the premise that there really may be no cure for me. If you thought for a second that I have "given up", then please continue reading this post because you really need to hear what's on my heart.

Because POTS is simply a collection of symptoms, your POTS and my POTS may be caused by completely opposite and different things. Some people have high BP with their POTS, not low BP;  some have normal or high norepinephrine levels. Others have low nitric oxide, but high nitric oxide has been seen too. Each end of the spectrum is seen in POTS. I don't know your history, genetics and other environmental, physical and developmental factors that may be playing a role in your POTS and you do not know mine. What holds true for me, may actually make another POTSy very sick. What doesn't work for me, may actually work for you.This is why you need to see a doctor and get a complete work up.

With that backstory, now it's time to get into the deeper aspect of this post.

"You did not do it right. You did not use the right supplements, use the right dosage, the right brand or wait long enough for the protocol to work."

How many of you have had someone attack and blame you for being sick?

I could go on and on with some of the things people have said to me over the years, but the details do not matter.  I have been told these things by fellow POTSies, CFS sufferers and other chronically ill people. I'm not even mad at any of these people. I feel more sadness because I wish they could understand what this type of thinking does to the people they are pointing the finger at and what it does to others reading these words.

It's like a plague infects the groups and the people within it. This idea that if it did not work for you, then you did it wrong, begins to resonate and take over and others adopt these same attitudes. New members see this and begin to take on the same attitudes and before you know it, the group simply becomes a place to follow and talk theory. "Theoretically you should do this". I have been told so many times "this is the fix" "just do this". Well I still have POTS, so those theories did not work for me... What am I supposed to do? Lie that I'm better?

When the Protocol or Theory Becomes More Important

This section might be a little hard for some of you to swallow. Understand, everything I say is out of love. I want people to break free from these chains we have placed on ourselves. I'm reflecting on my own experience.

As I started my health journey, I would subscribe to whatever new theory I had stumbled upon that day, week or month. I would read as much as possible becoming completely obsessed with it and reading website after website about the technicalities and science behind "how it worked". Once I got a good grasp of it, I was either convinced this was the "next thing" or I would decide it wasn't worth pursue any further. More often than not, I'd completely dive right in and become dedicated to the protocol in hopes that "this was the one". Remember at this time of my life, I thought this was just a matter of taking the right supplement.

My husband and I took this stuff extremely seriously. We followed the protocols exactly, following the DO's and DONT's precisely. It did not matter what it was, we did it because the protocol said so. We bought the best supplements, vitamins, minerals, herbs and followed things exactly. We both kept journals or made note of when we started a supplement. We started things one at a time and refrained from changing things on a whim. We went to the best of the best doctors, ordered all the right tests and did everything perfectly. We wastefully spent thousands and thousands of dollars.

I became personally invested in these protocols. I acted as if I was in a competitive sport cheering for my team. Rolling my eyes and scoffing at anyone who might suggest it was not a good idea or had an opposing idea or suggestion. After all, I could not let anyone attack MY protocol. How dare someone insult ME like that...

Come on! I am being real. I know some of you right now feel this way about a theory. There are so many nowadays, I cannot even keep track of them all.

Well I am done with this type of thinking. The person I used to be is dead now (figuratively speaking here).  I was Born Again on June 16 and God has been changing me over the past few weeks. I am no longer that girl anymore. I was trying to fight it, but I am done fighting. I had made my health my God. I had made the theories, my God. I had made everything and anything my God except for the real God. WOW!

The cold hard truth is that 5 years later, after trying hundreds of different supplements and protocols, I still have POTS. There is nothing I have done that has cured it. That is a fact.

To make matters worse, with our experimentation  my husband caused irreparable damage with a supplement and now has permanent hearing loss with hyperacusis. He has to walk around the house with ear plugs in. I can't sing around him. I can't do the dishes near him. Going to the store is excruciating for him. We got nothing good out of any of this stuff, so I'm done. No more paper theories.

I find genetics fascinating and I will likely make some posts about neat things I find out. However as far as nutrigenomics goes I just cannot do it anymore. I originally came here to help people, but I do not have the answers. All I can tell you is what did not work for POTS. That's everything I've written about and tried over the past 5 years....

Take Home Points

Do not let any protocol, doctor or theory become what you live for or live by. Come up for air and look around. If you aren't getting better, please be able to admit this to yourself. Don't let someone tell you you just did not do it quite right or did not take the right brand of supplement. This keeps people chained down for years. I know people who spent years doing various supps, hormone replacement or mercury detoxing with tiny amounts of success. Many of them are still doing it looking for the right dose, the right combo, the right... "This will be my lucky break".

The defend-the-protocol-at-all costs thinking is so detrimental. Watch yourself from slipping into this thinking. It is so common that people do not even know they are doing it. Take a look around and be real with yourself. Are YOU doing it now? If someone came up to you right now and said your supplement regimen or methylation theory did not work for them, would you feel offended? Would you tell the person they did it wrong? Would you listen to them at all? 

Do not let your poor health become the only thing you live for. I suggest taking a look at Dan Mohler. There is so much more to live for!

I love all of you. I have met amazing people in the past 5 years. But I have lost my desire to keep discussing these theories and concepts that never pan out. Just talking about it and theorizing and pretending we have any idea is not fun anymore. 

I will continue to make videos on my Youtube channel because having POTS stinks. I will still be looking at my genetics as well.

No more theorycrafting from me. I'll probably start writing about my spiritual journey and just my day to day life. This is a new chapter in my life, no longer focused on stupid theories, supplements and health.

God bless!

Saturday, July 14, 2012

Graphs of Heart Rates During Tilt Table Tests

I wanted to share with all of you a graph of my vitals during my TTT's. I'm not sure how to get BP's to work, but if I do, then I'll post those alongside the HR's so you can see how that correlates (or does not correlate in my case...hehe).

Cleveland Clinic

UPMC Passavant

At the place where I have marked Nitro, they lowered me back down briefly and gave me half a sublingual nitro pill. I thought it was going to kill me. I will never ever let any doctor give me that drug again! Ugh!

The Emotional Swings Can Be Hard

I don't normally write blog posts about my emotions, but today I wanted to explain the mood swings I get at times. I have been so agitated, pissed off, quick to anger. It is scary because when I'm like this, I tend to do really stupid, impulsive things. Days like today is when I'd delete my blog, facebook page or delete every cover video I've made on Youtube. It's scary. I also purposely try to offend people and say things that will make people mad at me. I actually feed off of the negative energy. That filter we all have on our brains, it sometimes stops working for me and it's exceedingly difficult to get it to turn back on.

Saturday, July 7, 2012

Heat Intolerance: It's Too Darn Hot!

I made a video talking about some of my struggles with it.

Admittedly I was doing a lot better in this video I made 8 days ago. Things got bad really quickly for me.

23andme Data: GEDmatch's New Rare SNP Finder

July 17-2012- This tool has now been removed from the website...

Thursday, June 14, 2012

[Video] Evanescence-My Heart Is Broken (Vocal Cover)

For the first time I did an actual video of me singing the song. This is what I do outside of looking at health stuff...haha Enjoy!

Sunday, May 27, 2012

These Symptoms Are the Reason I Made This Blog

This video contains the very reasons why I started this blog back in 2007. Here I am in 2012 and still suffering from the same issues. Everything I've done in the past 5 years hasn't helped me much. haha!

Heat intolerance and rapid heart rate upon standing. This is my life in the summer.

Friday, May 18, 2012

Quercetin Decreases COMT Activity

I found this interesting tidbit of information on Dr. Ben Lynch's facebook page today.

 Quercetin is a potent inhibitor of COMT.                                
        Ouch for those with COMT mutations.
                                                                                - Dr Lynch

Huh, very very interesting. He references this study on Pubmed as his source of information.

If some of you may remember, I used to take quercetin during chelation rounds because of the hives and itchiness I used to get. It seemed to help keep me from getting hives, but as soon as I did, it was worthless.

I wonder if it was in fact doing more harm than good. You figure, while chelating, you probably don't want to slow down your methylation system any more...Nor do you want to be dumping more dopamine, NE and epinephrine into your already weakened body.

This is why I am very happy to have tested for these SNP's. It helps me to get a better understanding of what is good for my unique individual body. I still don't think it's the CAUSE of my problems, but it does help me understand why I react to the things I do and why I tend to be "different" than many people in the chronic illness community.

Wednesday, May 16, 2012

Determining Your Yasko Methylation Results from 23andme Data

I no longer subscribe to this stuff, so everything has been deleted from my blog. Take care. If you want to know what I am doing now, then please see this video.

Methylation SNP's and other 23andme Genetic Results

Since getting my results back from 23andme, I have been digging into my results looking for some clues or some ideas or things to look out for. One of the things that interested me were Dr. Yasko's methylation SNP's. Now that the cost of genetic testing is coming down each year, its popularity is increasing in the chronic illness communities.

Do the answers to our chronic health problems, lie within our genetics? 

Friday, April 20, 2012

[Video] Chronic Illness: The Ways It Changes Us

Here's the next video on my health channel. What I love about making videos is you can finally see my real personality. :)

Tuesday, April 3, 2012

**New VIDEO**New Heart Rate Monitor Watch and My Garden!

I made a new video showing off my new watch! This video also demonstrates what my POTS is like for me and I gave you a nice little tour through my herb "garden" and flowers. :) Enjoy!

Be sure to subscribe to my youtube channel for more video updates. I'm hoping to make this channel more personal. I find making videos has been a nice release valve for me! It is much more personable than writing blog posts and you can see my goofiness and craziness come through too. haha!

Monday, April 2, 2012

I have HLA-B*1502 (23andme genetic testing)?

After some more research, I actually believe that 23andme does not call this SNP properly and/or it does not actually correspond with HLA-B 1502. I guess I'd have to get tested elsewhere to know for sure, (but I have no intentions of doing that).

The reason why I say this is because at one point in time Gedmatch.com had a rareSNP finder and this one did not come up as "rare" for me. I believe it showed frequencies all the way up to 20%. If more than 20% of people on Gedmatch shares this genotype, then it is quite common and could not possibly be accurate.

So I just wanted to throw that out there. All of my East Asian fell off of my Ancestry Composition when they updated it. So personally I think this SNP is not accurate and I would not be worried. If you are worried, then get tested at a lab for HLA-B 1502.

I kind of left all of you hanging there with my last post. I decided instead of taking another week to get all of my research and thoughts together, I'd just let you know what I found out with this 1 particular genotype.

Genetics is very confusing and I don't even partially understand it, but as you all should know, there are very important markers within our genome for our immune system. These are called HLA or human leukocyte antigen. These are located on Chromosome 6 and are responsible for the way our immune system responds.

When I ordered 23andme genetic testing, I was looking for anything at all that might give me some insight into my health. Well I think as far as discoveries go, I probably hit the jackpot. When someone opens up their genetic information, most people want to be warned about potentially harmful conditions or to alert them of some sort of disease they are carry etc.

After I looked in the initial reports provided by 23andme, I wanted to go even further. I downloaded my genetic raw data to my computer and loaded it into a program called Promethease. This program is free (or you can pay a cheap $2 to speed up the test) and it will alert you to any mutations or genotypes they feel are important.

In the "Bad section" I found something that had an extremely low frequency, high magnitude and seemed like it should have had a huge sign that said, HOLY SH*T READ ME, but it did not. Thankfully I was paying very close attention...

According to this test I carry what is called HLA-B*1502. People with this allele have a 1000 fold increased risk of developing Stevens Johnson Syndrome (remember me talking about this while chelating?) when taking carbamazepine, phenytoin and fosphenytoin. These are anti-epileptics drugs, but they also have other uses. Here's where it gets really weird though. If you look up any information on this it only talks about  this occurring in Asians. Well I'm not Asian, so I was pretty perplexed by this. The frequency for this allele to occur in a Caucasian is 0.0-0.1%. Yes that is 0.1%.

You can watch a short video from the FDA alerting people of this.

On 23andme I made a thread about my finding and some were suggesting that since I wasn't an Asian that this did not apply to me. I challenged this theory. No Caucasians were ever seen with this allele in any literature (Study 1, Study 2, Study 3 or Study 4) Therefore one cannot make the assumption that it would be safe to take these drugs. The only thing these studies were trying to show were that there are other HLA-B genotypes which have a higher prevalence in the Caucasian population which were causing CBZ-SJS.

Out of curiosity, I emailed one of the authors of the study and asked him if me (a Caucasian) would have the same risk as an Asian and he said Yes. I should avoid both carbamazepine and phenytoin.

Are there any other Caucasians out there with HLA-B*1502? Part of me wants to get this checked through Quest Diagnostic or Lab Corp to confirm I do in fact have this...When you come across something like this, I need further proof.  There is an entry in snpedia that testing for this may not be accurate because it is phased data.

The defining SNP's (said "snips") are:
rs3909184 GG
rs2844682 AA

The first one GG is common. It is the second one at AA that is rare in Europeans.  You need to have both of these in order to have HLA-B*1502. This association with HLA-B*1502, CBZ and Stevens Johnson Syndrome is well documented. If for some reason I would have ever needed an anti-epileptic, I never would have refused either of these two drugs.

Stevens Johnson Syndrome is serious business and it either kills you or leaves you in so much pain with health problems for the rest of your life. Some of the saddest videos I've ever seen on Youtube are of those people with Stevens Johnson Syndrome. They will break your heart...

Wednesday, March 28, 2012

23andme Genetic Results Are In

I plan on making a huge report of everything I found out both on my blog and in a youtube video. I found out some unbelievable things which I cannot wait to report to all of you.

Was it worth it? Absolutely. It might have saved my life....

Saturday, March 24, 2012

New Health Youtube Channel

I finally decided to start a new youtube channel talking about POTS and other health related topics. This is my introduction video about POTS.

I plan on making videos showing me struggling with POTS. I also plan on talking about what I've tried over the years too.

Thursday, March 22, 2012

Waiting on Echo and Holter Results

I decided I'd head up to the hospital medical records and request the Echocardiogram and Holter results ahead of time. They will be mailing them out to me when they get them, so now I won't have to worry about bugging the cardiologist's office.

Ever since Monday, I have been feeling terrible. I feel like a bus has hit me and I cannot get enough rest. Monday was the day I wore the holter monitor and I beat the hell out of myself to get good readings on the monitor. At this point, I'm not sure why I feel so terrible still. Part of me thinks the strep is coming back. I have a few new red spots on my ankles and the old nodules are starting to hurt again. It is not severe, but this makes me worried.

In unrelated things. I read on a health forum of some woman who had major improvements in her POTS when she took the fat soluble form of B1. I happen to have that in my house ( I tried it a few years ago) and decided to give it another go. I couldn't remember if anything bad had happened to me when I took it, so I just thought I'd see. Sure enough, it took 3 pills (1 a day) and the PVC's are back... I cannot even make this stuff up any more. I do not understand why my body immediately decides that all B vitamins are bad for me. So I will probably stop taking it and move on.

Saturday, March 10, 2012

New Cardiologist Was Great!

After a lot of contemplation, my husband and I decided I should make an appointment with a new cardiologist. Even though I started to feel better, my better half convinced me it was worthwhile to just make sure everything was OK. I dug through my records and it's been like 3 years since my last echo, holter and EKG. The first nightmare office cancelled my echocardiogram on me at the last minute which was a blessing in disguise. They wanted me to re-schedule, but I just cancelled everything with their office. I am not about to go back to some lady who had no respect for me at all. It was maddening.

I wasn't expecting much with this new doctor because why in the world would I let myself down again? Well everything went so much better than expected. First off the doctor was male and younger, which sadly I think usually helps me. I think in the very least they feel empathy. I don't normally do so well with women doctors.

Tuesday, February 28, 2012

The Tide is Turning!

Finally I am getting better. The swelling and nodules are almost completely gone. There is still some slight discomfort in my ankles, but I think things are getting back to my normal. :)

I don't wish EN onto anyone. It was so excruciating and uncomfortable.

Friday, February 3, 2012

Terrible Cardiologist

I have a new doctor of shame to put on my list. She actually outdid the doctor from MedExpress who told me I needed to get a job and that my heart acted up because I needed to do something with my life...LOL If you haven't read that whole story, then be sure to here.

So I went to this doctor as an emergency appointment scheduled by my PCP. I was supposed to have rheumatic fever ruled out and then that was that. Well everything but that happened and I was soo upset I just started crying in the car and also later on at a store. I have never ever cried like that in public. It was a full sobbing and the people there probably thought I was crazy.

This doctor, Dr. Sch****off was the biggest most condescending bitch I have ever seen.

This doctor is a fake nice. Very condescending. She treats you like an idiot and talks down to you as if you were a child. She will throw in little personal attacks in between questions. She doesn't like if you ask questions. She doesn't like if you know about your health problems and have input in your care. She wants you to be stupid, obedient, only listens and worships her. Those of you who have been reading my blog for years know that I refuse to worship doctors. They are normal human beings and don't deserve that sort of treatment.

She may very well find this post and I would say all of this to her face. I had to control myself as to not walk out during the appointment. It was one attack after another and all she cared about was my POTS. I tried to explain that wasn't why I was here and she did not care. It was like I was her new pet project. "Oh a new POTSY" for her to experiment on with medications. Screw that. I will never be seeing this doctor ever again.

During the appointment, she changed her mind about what was causing the leg edema. She also manhandled my legs after I told her to be gentle, which really pissed me off.

First the edema was POTS. Then after I told her it is not seen in POTS she said it was Addison's. After I explained away that, then she said it was the dose of steroids I am taking. I told her that I take the same amount of cortisol that her own body produces on a daily basis, so that is not possible. Then it was the NSAID, but I told her I had not been taking it until after the swelling started.

She tried to blame the leg edema on every single thing possible, but when I gave her information to prove otherwise, she would just move on to another scapegoat.

No EKG was run at all. She listened to my heart for a few seconds and that was it. "I don't hear any rub, so it is not rheumatic fever". If it were any other doctor, I might have believed them, but not from this lady.

I've wasted enough energy on this lady for a lifetime. I won't be getting the echo done there and will just use her for the blood work she ordered and never see her again.

Wednesday, February 1, 2012

Erythema Nodosum: The Journey Continues

Here's the latest pictures of my feet. Check out the swelling! The picture on the left is from 3-4 days ago. The one on the right is from this morning.I called the rheumy and they seemed mad at me because I wasn't taking the NSAID. /sigh so I took it last night and today just to prove to them that the swelling is far beyond just some swelling on the nodules. I actually have full leg edema. I have gained 6 pounds in the past few days from this!

I got all of the labs back and it is quite interesting! I am definitely a weird one and I actually find it hilarious. Labs don't add up to a connective tissue disorder at all. The one thing that I keep coming back to Rheumatic fever and the PCP and her assistant agreed. They are sending me off to a cardiologist tomorrow. She would have had me seen today but I couldn't get in. I guess they will be checking my heart to see if anything shows up. At this point, even if not, I think I want to try some antibiotics and see what happens. I'll be sure to load up on the probiotics of course. 

I also have no idea how the hell my CRP and Sed Rate is normal. I am soo inflamed it is not even funny.

ANA Positive 1:320 Speckled 
SED Rate 10 (0-20)
CRP 0.1 (0.0-0.7)
ASO 182 (0-168) HIGH This is the strep infection titers, so I definitely had strep in December.
RA <15.0 (0-30) Negative
DNA AB Double 1 (<4) Negative
SM Antibody <1.0 (<1.0) Negative
RNP Antibody <1.0 (<1.0) Negative

C3 Complement 122 (90-180) Normal
C4 Complement 33 (16-47) Normal
CH50 Complement  >60 (11-60) HIGH  This is low in SLE, Sjogren's etc, so I think I've ruled those out with this result. Can be high in rheumatic fever! Not many conditions make this one high.

Sjogren's Antibodies:
SS-A/Ro AB <1.00 (<1.0) Negative
SS-B/La AB <1.00 (<1.0) Negative
Histone antibodies 1.3 (1.0-1.5=Weak Positive)

Chlamydia Antibodies:
C Pneumon IGM, IGG, IGA  All Negative
C Trachomat IGM, IGG, IGA All Negative
C Psittaci IGM, IGG, IGA All Negative

Mycoplasma Antibodies:
Mycoplasma IGG <0.90 Negative
Mycoplasma IGM 176 (<770) Negative

EBV antibodies: These are always high for me because I had EBV when I was 16.
EBV Capsid IGG 3.76 Positive
EBV Nuclear  IGG 2.80 Positive
EBV Capsid IGM <0.91 Negative

Acute rheumatic fever can account for both the high ANA and the high CH50. Also I posted on Jan 22, that was getting terrible chest pains and PVC's. I told the PCP this and she said I just have so much going on, that I absolutely need to see the specialists. Wow I couldn't agree with her more. Wish me luck tomorrow at the cardiologists.

Sunday, January 22, 2012

Erythema Nodosum More Pics

As this progresses, the red hot, painful nodules are now becoming large, bruised nodules. Unfortunately right when I thought I was getting better, new ones formed the other day. Tonight I am feeling better again, but who is to say that a new crop of them won't form tonight.

The main symptoms associated with Erythema Nodosum is pain, swelling, joint pain, an overall sick feeling, pain, pain, pain and more pain. I have not been able to wear shoes for at least a week and have been sporting my lovely slippers everywhere I go. Sleeping is not easy either. If the sheets touch the spots, it hurts like hell.

I have been researching and these painful lumps may very well give me the answers I have been looking for for the past 11 years of my life. I almost feel like crying in a way. Lately my husband and I have been praying a lot for healing, guidance, hope and strength to get through these times. I asked God to show me anything that may help me to find out what is really going on. I kid you not, but just a few days later these bumps showed up. When I realized what they were, it was like a brick of information struck me upside the head (haha). Maybe I won't get all of the answers I am looking for, but it very well is leading me down a new path. For a very long time I have not had any new leads and have been just chugging along doing mostly nothing new.

Tomorrow I may find out what is going on, or not. Two diseases that can cause these bumps are two diseases that can also cause POTS. Coincidence? Maybe, maybe not. For once in the past 3 years I am actually feeling a bit of hope of finding some answers. Then in another 5-6 weeks I will have the genetic test results back as well. It is exciting times for me.

Just to note. My heart is skipping beats left and right and I'm getting a lot of shortness of breath today as well. Not fun.

Saturday, January 21, 2012

Erythema Nodosum: Confirmed

I managed to get in to see a dermatologist really fast. If you tell them you have a very painful nodule on your skin, they think it's shingles and will see you right away! Well I did not have shingles, but he was glad to see me any way. He said this is definitely erythema nodosum (yay for google!) and that he had only seen it a few times in his years as a dermatologist. Online it states he has been practicing for over 30 years...

Sunday, January 15, 2012

Erythema Nodosum: Yet another "skin" ailment

Well this is my first health update in a long time, but I feel I need to come out of my break and document this here.

I have developed what I believe is erythema nodosum. Here's the most sensible description I have found on it.
Erythema nodosum is a type of panniculitis that affects subcutaneous fat in the skin, usually first evident as an outcropping of erythematous nodules that are highly sensitive to touch.1 Most nodules are located symmetrically on the ventral aspect of the lower extremities. (Source)
I will be calling the docs tomorrow or Tuesday.. I want to get an official diagnosis and then get the followup labs/xrays done to make sure there aren't any more serious underlying issues.

How did all of this come about?

It came out of no where. I am not chelating or do anything special for my health at the moment.

Yesterday morning I woke up with a terrible pain in my ankles and in my wrist. It's been really cold, so I thought that maybe I was shivering in the middle of the night and I had strained a muscle. All day I was thinking, "wow my ankles are killing me", but I didn't even take a good look at them...

Right before bed, they were hurting so bad, I finally had enough of it and took my socks off and saw what looked like bruises. I pushed on them a bit because I'm apparently sadistic and I nearly jump through the ceiling. I ran into the other room to turn the light on to take a closer look. The areas on my feet/ankles that were sore, were bright red, swollen and hot to the touch. My husband immediately thought of gout and I went to bed thinking maybe that was it. I was too tired to do any research.

I woke up and started my journey. I ruled out gout pretty much right away because what I had was symmetrical on both sides of my feet. I had 2 red, swollen, hot, lumps just under the skin on the tops of my feet and on the side near my ankle bone. I also have one on my shin. Gout just does not present itself like that at all.

Eventually after some more reading I found Erythema Nodosum and I believe with great certainty that is exactly what I have now. Why? Who the hell knows? lol This is what happens when your body is falling apart and no one knows what is wrong. You start to manifest more problems as your body desparate tries to communicate to you that something is seriously wrong.

I know something is wrong, but I need help here!

The prognosis for this isn't bad. It's just a lot of pain, swelling and uncomfortable days ahead. Once it is out of the pain stage, these spots will turn dark like a bruise and stay like that for months. It is a slow healing condition and I hope I don't get them again. This is awful!

Some serious conditions can be an underlying result of the EN, so it's important to have everything ruled out and that's why I need to go to the docs for this one.


  • Idiopathic (up to 55 percent)
  • Infections: streptococcal pharyngitis (28 to 48 percent), Yersinia spp. (in Europe), mycoplasma, chlamydia, histoplasmosis, coccidioidomycosis, mycobacteria
  • Sarcoidosis (11 to 25 percent) with bilateral hilar adenopathy
  • Drugs (3 to 10 percent): antibiotics (e.g., sulfonamides, amoxicillin), oral contraceptives
  • Pregnancy (2 to 5 percent)
  • Enteropathies (1 to 4 percent): regional enteritis, ulcerative colitis
Rare (less than 1 percent)
  • Infections

  • Viral: herpes simplex virus, Epstein-Barr virus, hepatitis B and C viruses, human immunodeficiency virus

  • Bacterial: Campylobacter spp., rickettsiae, Salmonella spp., psittacosis, Bartonella spp., syphilis

  • Parasitic: amoebiasis, giardiasis
  • Miscellaneous: lymphoma, other malignancies
Mine will likely turn out to be Epstein Barr virus (because I had a flareup with that nasty bronchitis I had around Christmas) or nothing at all. But I just have to make sure and rule out some of the others like strep, sarcoidosis, lupus or anything else like that. It's never dull!

Tuesday, January 10, 2012

23andMe Genetic Testing

For Christmas I asked for 23andMe's genetic testing available for $99 plus a 12 year subscription to their service. I was so happy to see my mom handed me the money to get it done and today I collected my saliva sample and have shipped it out.

The results will take 6-8 weeks, but I hope it gets here sooner. I am soo damn excited it is not even funny. This test will let me know A TON of things. It will take me weeks, if not months to sort through all of the raw data included, but that's ok. I have a lot of time on my hands. One really good test now available in the latest (V3) chip of 23andMe is APO E. They now test to see if you have APO e3/e4. This shows your body's ability to detox and those with APO E4 have an increased risk of Alzheimer's and it has also been found in children with Autism.

Looking around online, it also tests a lot of Amy Yasko's methylation pathway SNP's as well as DBH SNP for genetic POTS.

Finding out my APO E is well worth the $99 and I'll get so much more out of it.