MSA/Shy-Drager year 12. Feeling something I swore I never would, end coming.

jaqie

Platinum Member
Apr 6, 2008
2,472
1
0
First and foremost I don't want anyone to mistake the reason I am posting this. I am posting this because I want to, not for pity, not for attention, but for myself, putting this all out there just in case my instincts are true (which they actually are and have been almost my entire life).

I have not had an easy life by any stretch of the imagination... born into an abusive household in a small town that did not understand or care to like or want me. The girl that liked playing with matchbox toys and sandboxes and all manner of electric and stuff, not much for dolls or anything, but also loving living animals.

I was not really accepted then... and that set the stage for me always being the outcast tomboy geek girl, to which I have always been.

I started having health problems around the time for puberty. Mostly it was back troubles, but there were also very serious problems with me being very tired all the time and sleeping / falling asleep in school. My father not believing in anything he couldn't see just took this opportunity to be even more hard on me. He didn't care that the teachers said that when I was able to be awake I was the brightest student they ever saw (the ones that didn't hate me for being left handed and a weird tomboy and punish me for such, that is)... I was misbehaving and had to be straightened out.

I eventually found out my mother had been being abused by him too, and we left together, but she did not hold together mentally, going into mental wards she was deemed unfit for her teenage daughter's care. I moved back in but got treated as a slave, not even allowed to be in the main house except when I was doing chores... a shack was built for me with an outhouse, no plumbing or water but I at least had power and heat, though it was a 1000 foot walk to the house in the forest and up a 50 foot bluff. I wasn't even allowed on family vacations...

One time I could not do what was required of me because I was "being lazy" (in great pain and unable to do anything) I was kicked out with nothing but an S10 pickup with a campershell and a few possessions stuffed inside. I could never really get on my feet because of several factors: my health was still giving me issues (even I thought I was just being lazy, I was brainwashed so badly by him), another being I have high functioning autism (which is very very close to asperger's), and there were other issues such as PTSD.

I drifted for quite some time, being taken advantage of by many people and never really able to get myself into a stable life nor stable job. You don't want to know the kinds of things that were done to me... I have blocked many of them out to this day.

Once I finally did get help to get on disability, after 8 years of transient living... and I have not been homeless since, though I have come very close several times due to the income levels of such being so low I have to room up with people and my HFA keeping me from understanding things. I did finally get some of my problems diagnosed and started to learn that I truly was ill and it wasn't just me being lazy. The entire time my health issues just kept getting worse, but I have always been a survivor. I just pushed through.

In 2003 I was diagnosed with MSA, and was told I had had it since 2000 when I had tried to go through college but suffered a sharp decline in my abilities, from biking to classes to a few months later being unable to do many things I had taken for granted... even though I had health problems before, this new problem which I had not understood was like being socked in the stomach and then beaten up every day... it really is a very nasty disorder that takes everything out of you, a little more each day.

I have been fighting it with everything I have, and enjoying what of life I could, and avoiding the people that would take advantage of me as much as possible, even though my functioning level of HFA is actually pretty dang low. For the curious, I had my IQ tested when in college, it was "above 170" which was as far as I bothered to test it... but like many with that level of intelligence, I also have the problems... You would think with that level of IQ I would be able to tell the intent of others, but not really. The only reason I am still alive is my instincts, I have learned to trust them, to trust what I feel I need to do, when my instincts warn me of something, I listen. This has literally saved my life on more than one occasion, including when I have had death threats against me when I lived in kansas.

Why would I have death threats against me? Here is one of the most difficult things there is for me to put on a public place, because I learned at an early age to hide it - the people that I told or found out have been the ones that want to harm me in so many ways... I was born intersexed. What this means, is that I was born with a mishmosh between male and female for a body. In the USA, anyone born like this is considered and is legally a male, nomatter how female they look or how female their mind/brain is. My father when I was born was told by the doctors to 'pick a sex' and then they mutilated my body to fit what he wanted in a child... not who I was, but what he wanted. I was treated as an object as children so often are. I was born with a body that was slightly male, but mostly female, as I have come to find out later... this is actually a large reason I have so many health issues - it's common for intersexed people to have major health issues. I was mutilated at birth by doctors who decided to assign a sex to me. I was not born male, but the entire world considers me one, nomatter what my heart and mind and indeed my health problems and body tell me inside.

This is something many people will not accept, and to this day the only thing I can think of besides hate for anything different is fear... fear of things they do not understand or know about. I tried to live as a male, I swear I tried, but the emotional trauma of it all just kept slamming me harder and harder, just like the health problems did. I no longer could take it... I had to live as who I truly always was, as who I was born as. But this country looks down on what they call transsexuals, even if I myself am not truly one, I have been branded as one because of what that doctor did to me right after I was born. Besides the heartwrenching pain of knowing how I am and was an object to be mutilated and trained into what others wanted, I have to deal with people that think and say that I am some kind of terrible being because of how I was born and what was done to me afterward. I also had to and still have to deal with the pain of knowing I can never bear children, I am one of the many unfortunate women who does not have the capability to give birth. This has been... one of the biggest hurts of it all. Even my birth name has become very traumatic for me to even see or hear.

Now the last few months, I have been losing the battle against MSA. I have felt myself get weaker and sicker, and have been unable to even pee without severe pain and bleeding and shaking so hard I almost fall down and having to lay down for a few hours after every attempt of trying to... and having to be almost entirely housebound because even on my good days I have not been able to get out more than an hour even with my roommate taking care of me and pushing me in a wheelchair wherever I need to go along with driving me places. I have been losing more and more cohesive thinking abilities, getting memories and thoughts mixed up so bad that I ask things that merely moments earlier I witnessed before.

All in all, I am proud to have lasted this long, not only to have survived abuse through my entire life, but homelessness and being unable to hold a job or support myself, even through that I got my own high school diploma even while living out of a pickup truck and being beaten on every week or so in high school because I was so different. I am proud of myself for having become an extremely knowledgeable PC tech and having beaten the odds of MSA (20% of people live through their tenth year of having it, I am at year 12 right now). I am still not in a nursing home, though I cannot do much that I like to do anymore and even typing this has been incredibly difficult and painful for me. This body is beginning to truly fall apart and though I would never, ever have said or even thought such a thing before, I can feel the end coming.

I so look forward to my next life, and so hope it will not be as painful as this one. If the response to this is positive and not painful for me, I will explain my spiritual beliefs in a following post, they are quite unique and some will find them fascinating and maybe even inspiring.

~Jaqie Fox, She who loves knowledge and life-love.
 

Idontcare

Elite Member
Oct 10, 1999
21,118
59
91
I am pretty confident that absolutely nothing I write will do you justice, Jaqie, but I feel for you and your plight. :rose:

You've had a hell of a journey. I hope you are able to find joy in the remainder of your mortal days, and blissful peace thereafter.
 

jaqie

Platinum Member
Apr 6, 2008
2,472
1
0
Thank you!

I wonder what people think about what I have posted, but nobody has said anything... cept you!

I am thinking maybe people just don't know what to say.
 

Idontcare

Elite Member
Oct 10, 1999
21,118
59
91
I am thinking maybe people just don't know what to say.

Given the "Views" count, I would agree with that conclusion.

What you posted is deep, and raw, and personal. People don't want to offend, they don't want to risk being disrespectful. So they don't post out of respect.

Take it as the compliment that it is, that you effectively communicated the seriousness of your situation.

It is a difficult topic to respond to if your personal priority in coming to these forums is "above all else, do no harm".

Responding to your thread in a way that is guaranteed to do no harm, guaranteed to not invoke within you deeply personal memories to which you allude, is a challenge. I certainly don't wish to add to your anguish, and posting in your thread risks doing just that.

I would not have posted anything at all if it weren't for the fact I know you and saying nothing would have been even more disrespectful than saying something at the risk of doing harm.

OK, see I've already said too much (again), so I'll leave it at that, with a :rose:
 

Cstefan

Golden Member
Oct 6, 2005
1,510
0
71
Words cannot do this any justice. If there is a god, I pray mercy be your path.
 

Kyle

Diamond Member
Oct 14, 1999
4,145
11
91
Wow...thank you for sharing...

Sounds like you've been through a hell of a journey and *should* be proud of what you accomplished given the circumstances. I honestly can't imagine a tenth of what you've had to deal with.
 

KidNiki1

Platinum Member
Oct 15, 2010
2,887
126
116
well, what you posted is a lot to take in all at once.

i don't really know you but it sounds like you have had one hell of a life. it makes me feel like i shouldn't complain about the stupid petty stuff i complain about. i'm not sure i could be so strong as you. and i am envious of your positive attitude in the face of your feelings that the end is upon you. having been faced with what i thought was my own demise a few years ago, all i could feel was fear, and sorrow. i commend you for your strength and perseverance and mostly your courage to share what i am sure is an emotional and personal story so openly.

i would give you a hug if i could. not just for you...but also for me, in hopes that your strength might rub off a bit.

i dont know what else to say really. wishing you 'the best' or the typical 'thinking of you' kinds of responses seem inadequate in this situation. maybe to wish that your next life is full of all the joy and happiness you deserved in this one, i don't know.
 

highland145

Lifer
Oct 12, 2009
43,537
5,945
136
I am thinking maybe people just don't know what to say.
this

well, what you posted is a lot to take in all at once.

i don't really know you but it sounds like you have had one @#!*% of a life. it makes me feel like i shouldn't complain about the stupid petty stuff i complain about. i'm not sure i could be so strong as you. and i am envious of your positive attitude in the face of your feelings that the end is upon you. having been faced with what i thought was my own demise a few years ago, all i could feel was fear, and sorrow. i commend you for your strength and perseverance and mostly your courage to share what i am sure is an emotional and personal story so openly.

i would give you a hug if i could. not just for you...but also for me, in hopes that your strength might rub off a bit.

i dont know what else to say really. wishing you 'the best' or the typical 'thinking of you' kinds of responses seem inadequate in this situation. maybe to wish that your next life is full of all the joy and happiness you deserved in this one, i don't know.
And this.
 

jaqie

Platinum Member
Apr 6, 2008
2,472
1
0
Thank you all for the wonderful messages here and in private.

I really did expect people to tear into me something fierce for a variety of reasons mainly my gender issues...

Thank you all. When I feel up to it I will most definitely post to explain my spiritual beliefs - they are quite unusual and rather extensive.
 
Mar 22, 2002
10,484
32
81
While I don't have time to comment in detail, I'd like to reiterate others' thoughts. The things that come with gender identity problems are exquisitely personal, difficult, confusing, and life altering. These issues alone are very taxing and very hard to get through. In addition to having a progressive neurologic disorder... you've had a difficult life. While I know sympathizing with you may not help much, know that I work with and support individuals with both of these issues. I've heard how people respond, how the individuals cannot define themselves, how they struggle, etc. I cannot begin to imagine the hardships this induces overall - I would like to say that I'm glad you are no longer without a home. I would also like to propose this: are you able to go to a physical therapist for MSA (multiple system atrophy)? It will not cure you, but it may help you find movement strategies that work for you in addition to re-training of your balance systems and more.

Also, I'd like to mention - I've read research that states as many as 1 in 100 people have some form of intersex characteristics. Think about that - in your college lectures, up to 5 people could have these problems. I think people respond in a disappointing way to this population and I feel it's completely inappropriate. You are a person. You are deserving of love. As I said before, I'm sorry you've gone through this, but keep going. If you feel you have anything left to give, give it. Fight back, speak to other individuals with intersex. I think your experiences give you a massive repertoire of teaching tools. All in all, thank you for doing this. It was very brave of you and I hope that you're able to focus on the positive things in life, even if they are few.
 

jaqie

Platinum Member
Apr 6, 2008
2,472
1
0
Thank you. Unfortunately physical therapy has proven to not help my individual case. My symptoms are in the final stages, the pee problem I talked about, I also have trouble breathing a lot of the time, and other problems which indicate I am in the final stages.

And yes, so few people know or care to know how common non-binary and other gender issues are... even fewer care to treat those of us that have such with even the most basic respect due any other living being.

Thank you.
 
Mar 22, 2002
10,484
32
81
Thank you. Unfortunately physical therapy has proven to not help my individual case. My symptoms are in the final stages, the pee problem I talked about, I also have trouble breathing a lot of the time, and other problems which indicate I am in the final stages.

And yes, so few people know or care to know how common non-binary and other gender issues are... even fewer care to treat those of us that have such with even the most basic respect due any other living being.

Thank you.

I'm not sure if you're familiar with pelvic floor physical therapy, but that is specifically focused on preventing urinary disorders, incontinence, leakage, pelvic pain, etc. If you're interested, you may be able to find a specialist in your area. Either way, I understand. It's a bit hard to try to focus on each piece separately when you feel like everything else is falling apart.
 

jaqie

Platinum Member
Apr 6, 2008
2,472
1
0
yeah that type of exercise will make my back problems (mentioned near the beginning of my original post) much worse... we tried it and I wound up in so much back pain I dont ever want to try it again. As bad as what I posted sounds, I actually do have a lot more problems I didn't list... a good example is I also have porphyria... and ehler's-danlos syndrome (EDS)... and on and on...blech! not going to continue listing, I dont wanna ruin my good mood today.
 

jaqie

Platinum Member
Apr 6, 2008
2,472
1
0
Art imitates life, life imitates art. Nomatter what your personal spiritual beliefs, this is prettymuch a fact. I am going to, as promised, delineate my spiritual views here, since you were all so kind to me. Since it is a good and mostly common point of reference and will save me a massive amount of typing, I am going to reference things found in modern media, even though I believed these things before I was exposed to them they are still a great reference. If I have some sort of error in my math or something here, please understand that I am trying to convey my spiritual beleifs and not prove them - correcting my error is fine but that in no way is acceptable to go from that to trying to convince me my beliefs are untrue or factually in error.

Even the most ardently atheistic scientists will admit that there is 'something' which keeps us, us over our lives, despite the fact that every 7 years every single cell including brain cells has been replaced. Something carries us, and our memories, over more than just copying data could do. There are two things known to human science referred to as brain and mind sometimes interchangeably by other people - they are not. The brain is the physical structure, while the mind is whatever makes us, us - the stuff that goes on that makes us alive.

There are a near infinite number of universes within the same space as this one, and I believe that each of these is it's own timeline, that some are so similar as to be inseparable from this one by any understandable measure... and many more so different from early changes in the timeline from when this multiverse was created that humans can never hope to understand them within a thousand lifetimes... and universes everywhere inbetween.

And then there are theories with very recent tantalizing bits of supporting evidence which point to some sort of mother medium for the multiverse where there are other multiverses growing inside - much like bubbles in a bubblebath, some touching and echoing off of eachother's borders with radiation and gravity waves.

I believe all of this is true. I also believe that there are far, far more than 10 dimensions, and that the time dimension in this universe (if not this whole multiverse) is crushed, almost pulverized; to the point that everything here must operate as a 4th dimensional being meaning being rooted in and unable to see time as just another dimension like the rest of them and thus manipulate it, unlike most multiverses.

Is it not feasible, plausible and indeed actually incredibly likely that other animals on this planet could have been the ones that developed into the dominant specie? Just one or a few environmental or happenstance things different and maybe neanderthal, or maybe even a non ape rooted specie gained it's dominance over all other the specie and wound up as the one developing into sentience and sapience? I believe it is, and in other universes within this multiverse let alone other multiverses within this mother dimension it has, is, and will happen.

Now, converging a few things here to connect the dots for the people who may not have already done so themselves: time is the fourth dimension. When you go into the fifth, above it, you see time as just another property of any and all objects which is just as easy to manipulate, given enough energy and technology or innate capability. Then you would be rooted in the multiverse, which is the fifth dimension. Timelines. But to you the multiverse would seem much like time is now and here - something you travel through linearly without a way to manipulate it. You would be able to manipulate time but only be able to reside in any one timeline at a time and your choices will push you in whatever direction your choices make, just like they do here as a human in this universe now. That mother dimension, if you are rooted in that, you would be able to manipulate timelines and time just like they were another property of matter.... and on and on. If you wish to learn more and do not already know about the 10 dimensions that are fairly easily theorized from here, there are videos and books on such.

Back to the multiple universes. Think for just a moment that if such exists, than everything humans have ever imagined, dreamed of, wanted, feared, and indeed even had a tiny fleeting thought about exists somewhere and some time in some timeline in some multiverse somewhere. Maybe our minds, the other more unknown part of the human self, are not rooted in the fourth dimension like we are? Maybe when we dream we are truly looking at some reality somewhere, and maybe even participating in it... Maybe that's even a different pocket of reality that our minds themselves created and spawned and now exists out there, somewhere, as a new multiverse, universe, or such. Maybe when we imagine that's another kind of reality... when we dream, another, where we may actually be participating somewhere in some event we can barely or not even comprehend at all...

There are some people out there who believe that some beings in this world living lives in a human body are either partly or wholly nonhuman in spirit, soul, whatever it is that makes you who you are. I am one of them. Some of us even feel extremely out of place because this body does not match our own internal map of who and what we have always felt we are. Some of us are dysphoric, some of us are not. My earliest memories are of loving wolves and foxes so much and wishing so much I could be one, so much that it hurt inside. Over the last 35 years of my life much of it has felt as being in a very misshapen body and very off-kilter world and society and even planet. My first memories are actually of me BEING a grey fox-wolf female with others of that specie playing and running through a forest with our mother. I have had several decades to analyze and pore over these memories and ponder this and many more things, and I personally believe I am not and never was a human - I am living this life as one, as far as I can tell, by mistake by wandering here without realizing what was going on until my self was trapped by an unfamiliar reality into an unfamiliar universe with extremely unfamiliar and disconcerting realities.

Beings like me are called otherkin. Do not mistake this term for another one it is often mistaken for - furry... furry is a lifestyle, not a spiritual belief. I am never and never was a furry - I do nothing that would put me into that lifestyle category, and never did. This is just what I believe spiritually. I have nothing against furries, but.... a lot of the things most of them do are from discomforting to disconcerting to outright disgusting to me so I would never, ever participate or even consider doing so. I do have friends which are furries, they respect my beliefs and I respect theirs and their choices. I have others which are both furry and otherkin. I respect them as well, so long as they respect me.

Back to the multiverses - I believe also that there is one specific universe out there (that happens to be in the late stiliferous era) which is referred to commonly by humans as everything from the spiritual realm to the astral realm, astral plane, and many more. This is where I believe I am from. It happens to be a place where the dimensionality is not crushed at time or anywhere else, and physics takes a slightly different approach to gravity and magnetism and other basic rules compared to here. The universe I am speaking of is quite a busy place, but far from the only one like itself. It is where I believe I am truly from, as in where I was born and where I will go to after this life is over, unless I have somehow become trapped here and will no longer be able to travel when I am made of only the stuff of the mind.

The stuff of the mind... what I like to call life energy. I believe it is a substance like any other, but it is not rooted in the 4th dimension, but much higher... and that is why science has no grasp on it, that it is part of a large stew of substances and energies known now to humans as dark energy and dark matter because it exists above the 4th dimension and is thus obscured form human observation. I believe this stuff, the substance of life itself, is what humans call god. I believe there is this energy in everything, and everything has an amount of this same energy in it. Only certain things can react with it in order to form the correct type of structure for life - the counterpart to the biological stuff of life on the lower 4 dimensions which truly makes it possible.

I believe this energy forms consciousness in things humans have not realized it does, that things that are alive that are on an entirely different frequency if you will of life than humans exist in - and there is synergy between the life humans have and animals, even plants and rocks... even computers and cars. The more someone cares for something and puts car into something the more likely life is to have developed and become conscious on this other frequency humans are unable to physically sense in any manner. This is how people are able to sense when loved ones are hurt or such from great distances, how the great bond can develop between animal and human, even how you can come to have sentimental attachments to certain things you place great emotional value in. I believe those things are things you have mind based links with, spiritual links with... which can convey some fuzzy and broken data through depending on how strong the link is, but is severely limited by the fourth dimension being so crushed here, not much can get through the rubble that is that one to the ones above it. The mind is not restricted in thus when not attached to this body. Some people do not wish to and or cannot handle such things, and thus in malfunctioning self defense deny it is even possible, attack them and even the people that can and do handle and believe in such things. They grew up rooted in the 4th D and like a panicked and spoiled child rebel violently against them when exposed to them.


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I will continue this later, I am in far too much pain to finish this post on my spiritual beliefs right now. I hope this will help some of you see life how I see it, and maybe open up to new and better possibilities and benefit from it.
 

QueBert

Lifer
Jan 6, 2002
22,458
773
126
I read these forums at work when I'm bored, I never really expect to come across something on here like this. I might have to re-read it when I get home. You're strong on a level most people couldn't even imagine being on. I'm now looking at my "problems" and thinking how selfish I am.

There are some real winners on these forums, but I don't think even they could possible rip into you for what you wrote.
 
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AyashiKaibutsu

Diamond Member
Jan 24, 2004
9,306
3
81
As someone with EDS, a multitude of other rare and common conditions (mostly prevalently female ones oddly enough), and gender dysphoria, I can feel for you. I've also gone through the whole feeling like I was just lazy throughout my life thing and still believe it somewhat. I have a lifetime of rapidly degenerating joints, daily migraines, and many other problems that make me question the worth of continuing, but that's nothing compared to what you've been through and are going through. I'm glad to see you being strong about it as well as being willing to talk about it in such a public forum.
 

SilthDraeth

Platinum Member
Oct 28, 2003
2,635
0
71
I just read this after reading a response you posted in another thread.

I had to look up what MSA is.

I know you posted also, about fear of laws targeting how we are born, etc, but at the same time, I feel there is a greater acceptance of people with disabilities.

I hope that isn't just my optimism speaking, because I share the same fears, but I have two children with disabilities, and thus far, at least from the school they attend, I believe they are being treated well, and there is a better understanding and acceptance than there was when I was a kid.

Wish you the best in your years to come.
 

jaqie

Platinum Member
Apr 6, 2008
2,472
1
0
Thank you all. Wound up in the ER a couple nights ago, a****** doctor wouldn't even listen to me, and treated me like dirt. Sent me home without any pain meds despite me being in 8/10 pain... and even gave me an antibiotic which was on my allergen list. I think I may have sepsis, he refused to even do a single test. Barely been able to do anything at all since, basically bedridden.
 

Maximilian

Lifer
Feb 8, 2004
12,603
9
81
Im one of those people who dosent know what to say That brought a tear to my eye though, i wish you the best jaqie!
 

jaqie

Platinum Member
Apr 6, 2008
2,472
1
0
thank you. <3
No, I am not.
I used to be on HF long ago, you can find my now retired username LadyJaqie there. I had a bit of a tiff with kyle bennet and the result was me being blocked from posting anymore.
 
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