Mystery Disease Update

Posted in Uncategorized on April 26, 2017 by auroregray

So, earlier this month, I had an MRI done. Everything is good. Nothing there to cause any concerns. Definitely NOT MS. So that’s a plus.

Anyway, today was my appointment with the neurologist. Very cool guy, super nice. Anyway, so, having a B12 deficiency is the most likely culprit so far, causing B12 Neuropathy. At least, that’s what he thinks. So, I was supposed to get a B12 shot today, but the nurse in the clinic, sent me down to the pharmacy to get it. There, I discovered that Medicaid isn’t approving it. So, I picked up some B12 pills, and started those. Hopefully that’ll help a little until I can get the shot.

He also did some other tests and whatnot, and discovered that my reflexes in my arms and legs are not the same. Apparently, they should be. The ones in my arms are lacking a bit, and the ones in my legs are a bit more twitchy (for lack of a better word). He also had me hop on one foot while holding on to me, so I didn’t fall, and saw that my coordination is a bit off as well (even for a klutz). So, on that note, I now have another MRI scheduled. This time it’s of my neck and spine.

Oh, and he explained the MTHFR mutation, and the relation to folate and folic acid. There’s no way to take folate. I can only take folic acid. But he also explained that it’s not something I need to be overly worried about.

The band of tightness I get around my chest is another form of paresthesia, but because it’s in my trunk, and not my extremities it feels like tightness and pressure rather than numbness and tingling. So, all those doctors who thought it was just strained or pulled muscles were wrong. It’s nothing to do with my muscles. But it’s also something I don’t need to be frightened about having a heart attack either.

Lastly, the hypersomnia (over sleeping) is cause my brain is a lazy sleeper. I need to pick a bedtime, and a get up time, and force myself to stick to it in order to train my brain that it is not in charge of sleep, and it needs to sleep properly. It can no longer be lazy.

So, that’s where we’re at for now. I’m finally getting some answers after 10 years of dealing with this mess.

Mystery Disease- Update

Posted in Life, Uncategorized with tags on March 16, 2017 by auroregray

So, I finally caved in and went to the doctor, today. I made sure to bring my medical records from the last 10-ish years with me. Normally when I’d bring those along, most of the doctors wouldn’t even bother to look at them, let alone actually go through and see what all had been done previously. Most of them also seemed to act as though they thought I was a hypochondriac or a complete wacko, and they treated me as such. This is the main reason, other than never finding anything, I have put off going and trying to figure this shit out for long.

Well, kids, today was totally different. The doctor and nurse I saw were amazing. Super nice, and they actually seemed to care and listen to what I was saying. They also weren’t put off by my joking (because that’s how I handle stress I make jokes.) either. Both of them took the time to actually listen to me describe my symptoms, and they never interrupted me. The doctor did the basic neurological assessment, then he actually took my records out to his desk and went through them (possibly even made copies). When he was finished with that, he brought them back to me and said he was quite impressed by the fact that I have kept them all together for so long, because  apparently most people don’t do this. Then he proceeded to tell me that he  wanted to start off by doing a blood draw to check my different vitamin levels. He also referred me to radiology so I could get another MRI done, since  it’s been about 10 years since the last one. He then also said he’d referred me to a neurologist. He made sure that I knew we’d be doing the MRI before actually getting into neurology, because sometimes they are quite backed up and it could take a while to get in with them, but he did want the MRI first, because if it does show something, we can sort of fast track me getting in with the neurologist sooner. He also reassured me that if the MRI doesn’t show anything, it doesn’t mean that there isn’t anything wrong, just that it isn’t showing in the MRI. He also told me that if I don’t hear from either of those departments within the next 5 days, to call them and get the appointments scheduled.

 

So, that’s where we are. Started over, and hopefully, this time, we’ll finally get an answer. I will keep y’all updated as I learn more.

Mystery Disease??

Posted in Uncategorized with tags , , on February 15, 2017 by auroregray

I know a few of you out there know me personally, and therefore know of or at least heard me mention having a mystery disease. However,  as I sit here tonight, unable to sleep, I figured I would try something a bit different this time. Instead of googling and researching what it could possibly be, I figured why the hell not write about it? Maybe someone out there will have a clue as to what it could be, or some sort of trinket of information to get me closer to figuring it out. So, here I am.

About 10 years ago, when I was 28, I began noticing that my arms and legs seemed to “fall asleep” all the time. You know that pins and needles feeling you get. But it wasn’t just from sitting in one place for a long length of time, or anything like that. It was sitting, standing, sleeping… it was whenever it wanted to happen. Completely random. And it would last for a while and then go away. Sometimes it would come and go multiple times a day, everyday for a month or two, and other times it would be for a few short minutes one day and then completely vanish for months at a time. Along with this new sensation, I discovered that my hands didn’t seem to work they way they used to. This one is a bit more difficult to explain. It wasn’t that they didn’t work, because they did. They just didn’t work correctly. I would struggle to accomplish tasks that required fine motor skills, such as spread peanut butter on a piece of bread, or hold an object in my hand without dropping it. The dropping bit didn’t strike me as odd, because I have always been known to be a klutz. Anyway, I went to my doctor and explained the issue. The only issue I really mentioned was the pins and needles, because it seemed the most bizarre at the time. They did a test, and when those test results came back, they referred me to a neurologist. Little did I know then, that that test was, for the most part, the only test to ever come back showing something of concern, nor did I know that the next ten years following would be ridiculously exhausting with no relief. Little did I know things could, and would get worse.

Moving on, I make the appointment with the neurologist. I’m at the appointment and he begins asking me questions and doing just a basic exam. Then he begins to ask if there are other symptoms that are present with the pins and needles, and he starts rattling off different symptoms. Headaches? Well yeah, I always have a minor headache. Weakness? Well, my hands seem to think they can just drop things for no reason, but I’m also a klutz. They also seem to not work properly. I then continued to describe that issue. Vertigo and/or dizzy spells? Yeah, all the time. Fatigue? Yeah, but it’s probably related to my depression. Oh, you have depression, too? Yeah. He does that basic neurological test where they have you squeeze their hands, or try to push them away, and standing and balance tests. Then says everything seems fine, but he looks confused. He then decides to do some blood tests and an EMG. Over time I had about 12 large vials of blood drawn and tested for all sorts of autoimmune diseases, an EMG, and & a MRI all performed.  Amazingly the only things found that were abnormal were my thyroid and my thiamine levels. He prescribed thyroid meds for the hypothyroidism, and told me to take Vitamin B1 (Thiamine) 100mg every day. That was it. We figured it out. Or so we thought.

The B1 and meds seemed to be helping out at first, and I began to feel a bit better. Then, suddenly it all came back. Over time it either became worse, and new symptoms appeared. I lost the majority of feeling in my hands other than extreme sensations. Pin & needles in my arms and legs were now happening all over (in my chest, in my back, in my face, etc…), muscle spasms/twitches (also everywhere. The most frightening one is when it happens in your rib cage.), headaches and migraines become worse, general pain becomes more intense, dropping things and falling also seem to occur more often… a lot more often. I also seem to get this feeling that there is a band around my chest (usually about where the band of my bra would rest) but it feels like it’s tightening and then loosening repeatedly. This is the most frightening of all of these symptoms.  And through it all, I seem to have lost the motivation to do anything. Fatigue is the worse symptom of them all.

As of right now, I can tell you that I still take the B1, and the thyroid meds daily, but I also take antidepressants, and Ibuprofen daily. I have also added vitamin D3, which seems to help a bit with energy and fatigue. It’s also been discovered as well (I’m not sure if it’s related to the mystery disease or not) that I have homozygous mutations of the MTHFR A1298C gene (not 100% sure what that means other than I should probably take folic acid?) and my body seems to be producing too much estrogen.

At this point, I still have no answers. The neurologist I saw previously quit and moved to another state, and I’m also in another state as well. So, that only means if I want to try to get it figured out by a doctor, I get to start all over with my GP and my medical records.

Lastly- does any of this familiar to you? Do you know anyone with these same issues? Could it be MS and they just didn’t find anything in the 1 MRI? I ask about MS, because that seems to be the most likely culprit from what I can find through my research of my symptoms, and because my paternal grandmother had MS, and one of my cousins on my dad’s side of the family also has it, so I know the risks are higher. Should I call my GP and see if they can see me and point me in the right direction?

 

A Downward WTF Spiral…

Posted in Life, political, Uncategorized with tags , , , , , on January 31, 2017 by auroregray

I have been wanting to write a blog post about what is happening in this country, and consequently, around the world, but I’ve been postponing it due to the fact that I am still trying to understand it all myself. At this point, I’ve come to the conclusion that there is no understanding it. There is no making sense of it anymore. It’s just too much, too fast. At this point the appropriate reaction is “What the fuck?”.

So, I’m going to take a stab to try and organize my thoughts on what I can keep up with that is going on. This post is NOT an attempt to change anyone’s mind, because I think we’re well past that, now. If it hasn’t happened yet, I don’t think it ever will… until it’s entirely too late.

After the inauguration, suddenly the white house website seems to have selective words, phrases, languages, and what have you removed completely with nothing but an error message. What the hell is that all about? According to snopes, most of it was moved to another site/page to separate it and the previous administration from the current administration, but NOWHERE did anyone bother to let us know that, which seems to be part of the WTF? Then came the gag orders… scientists, national parks, etc are all under gag orders to keep them from telling the truth about things such as climate change. And then the media gets their gag order, basically saying they can only report “alternative facts.” Y’all DO realize alternative facts are not facts? Do you really think we are stupid enough to not see and know what you’re doing? Are you so stupid to think that we will buy into that and not see right through it? And of course there’s the temper tantrum over the crowd size. What are you, 3 years old? Then we get into the remainder of the downward WTF spiral with things like, repealing the ACA (Affordable Care Act, which, by the way, for those of you not intelligent enough to know, is the exact same thing as ObamaCare. It has many names.), giving the okay for the Dakota Access and Keystone pipelines, which has the potential to ruin the water (and by potential, I mean it will- just give it time), building a fucking wall (which anyone with even half a brain knows that’s not going to do shit, because a.) planes, b.) tunnels, c.) boats, and d.) there’s already a fucking wall between San Diego and Mexico!), and now this fucking Muslim ban that’s happening (and yes, it IS a ban on Muslims, he’s been just fine allowing Christians in, but not anyone who isn’t Christian. Which is not only fucked up and unethical, but ridiculously unconstitutional.) Oh, and did you know he fired Acting Attorney General Yates, because she fucking stood up to him and REFUSED to abide by this ban? Yeah, that happened. Oh, and trying to defund planned parenthood, infringe on the rights of women, LGBTQ people, and basically anyone who isn’t a rich, white, Christian male. Then there’s also the voter fraud thing (which didn’t happen, BTW). *sigh*

So, now, here are my questions about all of this (I don’t care what party you belong to, who you voted for, or any of that, if you can answer these questions without name-calling, “alternative facts”, and just plain meanness, then you are more than welcome to participate in this discussion. Just be nice.)…

Why so much all at once?

Is he trying to throw so much out there so quickly to discombobulate and confuse us?

Is he aiming for chaos?

Is he trying to wear us down by making us stand up and oppose so much at once in the hope that we will tired out and quit? If so, does he really believe we will quit?

Who the fuck is Bannon? Where the hell did he come from all of a sudden?

Do y’all not understand just how bad this downward WTF spiral is when BOTH Gorbachov and Cheney AGREE that this is looking like it’s about to lead to war/ww3?

 

 

 

 

Friends show their love in times of trouble, not happiness.

Posted in Uncategorized on November 9, 2016 by auroregray

Last night, as I was watching the US election results coming in, I was filled with anger, resentment, and fear. And it showed. I posted some stuff that may have been a bit mean, and other stuff that probably wasn’t completely accurate. I apologize for that. However, today, as I’ve had time to let it all sink in and think about what this result actually means, I am a bit more able to express my thoughts and feelings about it. Mind you, I am still angry, upset, and afraid but I’m allowed to be, so let’s just go with it…

Yes, I’m afraid. I’m a little afraid for myself as a woman, but I am even more so afraid for my friends and family who are PoC, LGBTQ, Muslim, Disabled, etc…

I am fearful of what is going to happen to our country. We’ve already seen the start of it with the stock market crashing as the election results came in.

However, I do understand that the president himself cannot change laws without the approval of both houses of Congress. This is why our system was set up this way. However, I am a bit concerned, being that the majority of Congress are Republicans. This frightens me, because it seems so easy now for them to be able to repeal things such as Obamacare, and equal rights for LGBTQ married couples. I’m not saying it’s going to happen, because let’s face it… no one really knows what’s going to happen, but it is a possibility and it’s pretty terrifying.

Another reason I’m fearful is that roughly half of our country voted for this man. I worried that people I love (possibly even myself) are going to be attacked by other members of our community for who/what they are. PoC are likely to be attacked much more now. Women are likely to be sexually assaulted and raped much more. People of differing religions are also more likely to be attacked as well.

This is what scares me.

So, today, and every day moving forward, all I can hope for and ask is that we all hold our loved ones close, stand up for others, and stand up for yourselves. We have been a divided nation for a while, and now it’s never been more clear just how divided we all are. So please, let’s unite as a people, and care for a love one another. Let’s not share in the hate that is so easy to get trapped in (yes, I’m guilty of it, too, at times). Now more than ever it’s time for us to act and not react.

“Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it.”
Martin Luther King Jr.

 

Black Lives Matter

Posted in Life, Uncategorized with tags , , , on September 21, 2016 by auroregray

I’m sure that title got your attention, whether you agree or disagree with it. That’s the point. Continue to read on, because I cannot stay silent about this any longer. I am not the type of person who is going to go out and join a protest, but this is still an issue, and one that I cannot remain quiet about any longer (not that I’ve been all that quiet about it to begin with).

Black lives matter. That’s it. It’s not black lives matter more. It’s not saying that other lives don’t matter. It simply is what it says, that black lives matter, too. There is no need to start an “all lives matter” anything, because it’s not all live that are being killed. It’s the black ones. Saying we need an all lives matter is like saying we need a white history month or a white entertainment television channel on tv. Do you know why we don’t need those things? Because the majority here IS those things.

The reason BLM is a thing, is because certain cops (NOT all cops) are killing black people for reasons that they shouldn’t be killing them. Your arguments are invalid. “The guy was on drugs?” How many drug addled white people are arrested each day? How many of them are killed? See the problem with that argument? It’s the same with any other argument you can throw at me. So, unless the person is ACTIVELY attacking/shooting at the police officer(s) there is no justifiable reason for them to be killing/shooting these men and women.

Next is the argument of black on black crime takes more lives than the cops. While that may be true, there’s a few things wrong with this argument. 1.) MOST violent crimes happen WITHIN the same racial/cultural areas. Very few violent crimes cross racial/cultural lines. 2.) Citizen vs citizen violent crimes where the offender gets arrested, has a trial, found guilty, and serves his/her time is EXTREMELY different from police officer vs a citizen violent crimes where the police officer is put on PAID administrative leave. That’s the problem. Do you see the difference, now? The police are supposed to PROTECT and serve us, all of us, not shoot and kill those of us they are taught to be afraid of (or whatever else reason they want to come up with that make no sense).

Saying that BLM is a hate group is incorrect. They are not. Again, it’s not about hating others. It’s about drawing focus to a MASSIVE problem that’s happening in our country right now. It’s not a racist thing. It’s not saying that all lives don’t matter. All lives do matter, but arguing against blm with all lives matter immediately takes the focus off the problem.

The problem here is racism and white privilege. Yes, I said it. It IS a problem. Is it a problem for me, as a white woman, absolutely not. I have nothing to fear (other than  the rape culture, but that’s another rant for another day) when I’m stopped by the police for speeding or whatever. The worst I have to worry about is how to talk my way out of a ticket. I don’t have to worry about being shot or killed by said police officer, because of my white privilege. My sons also do not have to worry about it either, because they have far more white privilege than I, simply by being male. However, the reason this concerns me is because my friends, their families, and some of my own family, DO have to worry about these things. So, no, I cannot relate, but I can shut the fuck up and listen. I can do actual research instead of just what’s posted on Facebook, Twitter, Tumblr, etc. and I can use my white privilege in a way to help bring attention to a continuing problem.

Yes, racism is STILL a problem. Black people are not treated equal to us. Is it better than it was, in some ways, yeah, in other ways, absolutely not. Until there is no more white privilege, until there is no more black people being killed by police, until there isn’t a presidential candidate saying that all Mexicans and immigrants should be deported, until there is no reason for us to even be having this argument, there will continue to be racism in this country. People of color will continue to be discriminated against. Yes, it IS a problem.

 

 

 

Needs…

Posted in Life on July 28, 2016 by auroregray

Everyone has needs… physical, emotional, and all the others as well. Every now and again, the realization hits me that some of my basic needs are not being met. I love my children, and I’ve built some amazing work relationships, but that’s not enough. I haven’t had a relationship in 11 years, and it’s been a little over 9 years since I’ve had any sort of sensual or sexual human contact. Trust me when I say it’s not been for a lack of trying, either. Which, leads me to wonder is it me? Is there something wrong with me? Am I too ugly (I’m not saying I’m ugly, just more that I’m rather plain)? Too fat (I have belly fat that makes numerous people ask if I’m pregnant, which I am not!)? Disgusting? Crazy? Bitchy? What is it? I’ve been told my standards are too high, but is that really the problem?

Another area where I feel empty lately, is the friendship area. Yes, I have wonderful, amazing friends, but they’re not here. Although I don’t always seem like it, I am very much so an extrovert, and therefore I need my people. My people are not here. They are either too far away to travel to visit, or they are busy meeting their own needs of love, affection and belonging.

I need to be wanted. I need to be loved (again, I love my kids, but that’s not exactly what we’re talking about here). I need to be touched. I need to be kissed. I need physical contact, rather than the DIY approach. Nothing wrong with the DIY approach, but after so many years it gets old, and leaves me still wanting more; still needing more. Is that too much to ask?