In July 2012 God called me out of the natural health communities and he told me to seek Him for healing. I stopped all the research that I was doing to follow Him. My only hope for healing in my life is through faith in Jesus Christ.
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:
VMQ6KG
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.
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.
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
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.
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.
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!
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 attackand 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.
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!
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.
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.
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.
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.
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?
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!
Update:
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.
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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...
