Opening Up

I haven’t really been open about my medical stuff lately for many reasons. Mostly because I don’t want anyone looking at me or treating me differently because of it. The next biggest reason is because its confusing; so confusing and involved that I can’t even be treated by the doctors up here for it, I have to be seen in Boston for it. However between the comment from my beautiful (right down to her soul) cousin Deanna and the way I’ve felt these last 24 hours, I’m going to share. Besides maybe this will reach someone else that lives with the same issues. Buckle up, it’s one hell of a ride!

Next month I’ll finally see the neurologist for the “official” diagnosis and a more comprehensive treatment plan for my dysautonomia. What the hell is that you ask? Well, that’s what I asked too lol! As shared on the Dysautonomia International website:

What is dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. (Don’t panic, I’m not a severe case that will result in death!)


As you can see in this picture, this disorder can impact literally every system in my body. There are ways that we know for a fact it currently impacts my body, and there are other long term issues I’ve had that were probably caused by this. For those that are interested I’ll spell some of it out.

Currently I am being treated for inappropriate sinus tachycardia. My resting heart rate is 126 on average, when it should be around 65. I take medication to keep it around 65 because left untreated my body responds to a simple walk the way it used to respond to cycling uphill. This has been accompanied by several instances of severely low blood pressure. The heart meds seem to have corrected that as well thankfully.

The other big issue is my body temperature. I’ve always run a little cold (averaged around 97.8) but these past few months its been really low. Daytime average is around 96.3ish, but waking up I tend to be around 95°F. Sometimes those low temperatures make my mind foggy and make it hard for me to focus or really catch much of anything said to me. When I had my accident in December my temperature was so low it wouldn’t register on the oral thermometer in the hospital, but I was awake, alert, and coherent. Sore and cold as hell, but alert!

Because dysautonomia impacts the nerves, I don’t typically receive the warning signals you would get for being that cold. As an example, despite these low temperatures that are at times dangerously low, last night was the first time all winter that I’ve had goosebumps! I rarely shiver. I just turn purple and white, then get brain fog.

The warning signal issue is also a problem with my hypoglycemia. For at least the last 3 years I have not received the typical warning signals that my blood sugar is dropping until it’s down in the 50s, which again is dangerously low. That’s why I sip coffee all day- it’s a literal lifeline for me. As long as I have a constant flow of sugar, a little bit at a time, I don’t have to test my glucose 10 times a day and my glucose stays up around 100.

I also don’t tend to feel hungry often. Maybe once a day my body will remind me I need to eat. When I was crashing down into the mental hot mess I was a year and a half ago, it wasn’t uncommon for me to miss entire days of meals simply because I didn’t feel hungry, which I’m sure played into my instability at that time. And often when I do eat, a “normal” sized portion makes me feel overly full. Like Thanksgiving day meal full.

This disorder is also the cause of the tummy troubles that started at the end of 2010. It causes the nerves in my intestines to respond to food digesting by sending pain signals to my brain. Before I began proper treatment for controlling those nerve signals, the pain would at times be severe enough to literally render me unconscious. If theres one thing I’ve learned, it’s that the power of the body is incredible, both in what it can dish out as well as what it can take!

It particularly sucks on days like today. It’s freezing cold outside, so my body temperature is more of a struggle. I’m also sick, but I wasn’t sure I was because my “fever” is a temperature of 98.1. When I saw the goosebumps last night I suspected I may be in trouble though. Well, as soon as the amazement and giddiness faded away anyway.

Theres more, such as the headaches and such, but those are little things that pop up. Ultimately I’m lucky, or as lucky as one can be in this situation, because at this point my dysautonomia is Primary. That means that for whatever reason the nervous system has gone on the fritz. It’s not Secondary, because I’ve been fortunate enough to not have any autoimmune diseases that this is a side effect of. I think this is enough, I don’t need an autoimmune disorder too!

For those of you that have stuck with me this far, I genuinely appreciate your interest in what’s going on with me. I won’t ask you to try to understand any of it because it’s so confusing at times that I’m not always sure I understand it! All I ask is that you remember that I am still me, I’m the same person I’ve always been. Please don’t treat me any differently than you did before you knew all this. That fear of being treated more delicately is why I’ve handled this mostly alone and haven’t shared. I’m still strong. I’m still, and always will be, much stronger than I seem.

Now I think I’m going to go take a nap. Hey, I’m strong but I still have a stomach bug!!

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Emotional Logic

As I await the urge to sleep I’m contemplating my day and what its revealed about my perception of myself. I’m so much stronger than I used to be. I’ve also been so terribly wrong about myself.

I had an appointment that I was terrified to go to. Logic offered to bring me, and because I have kept so much to myself I accepted his offer so I could have an in depth talk with the doctor without upsetting anyone. I had genuine anxiety this morning, for the first time in a long time. I hadn’t realized how much control I have gained over that issue until it slipped away from me today. I’m stronger than I realized.

Driving home from Cap’ns basketball game (he scored right away!) I found words for another realization. For several months at least I’ve been saying I didn’t think I’ve ever experienced a healthy love before, but I was wrong. The love I had for, and with, Logic was healthy. I wasn’t healthy. The stress of preparing for the sale of the kingdom broke something inside of me. It started a downward spiral that destroyed my life. But as I said today, sometimes things have to fall apart so better things can pull together.

Make no mistake- my relationship with Logic was mine to keep or ruin. I ruined it with Logic. He had his own issues to handle, and perhaps things would have ended anyway (he had things falling apart on his end so as to fall back together as well) but I can see the things I did that pushed him away. It’s embarrassing, its shameful, but it’s the past and can’t be undone. I’ve done what I can about it: I’ve owned my mistakes, I’ve apologized for them, and I’ve grown from them. To his credit, he seems to have accepted my apology, and he doesn’t use those mistakes to punish or attempt to hurt me, which is kinder than a lot of men I know would be about it. It doesn’t surprise me though. He’s Logic, not prone to manipulation like that because manipulation isn’t a logical choice in healthy adult relationships.

One last, and almost comical, realization: I have developed high standards. The person I was dating gave me the silent treatment. Several years ago I would have tolerated it or at least tried to move past it. Not now. I have zero interest in manipulative behavior or games. I’ll be his friend because he and I get along well enough when we get along, but any chance of romantic interest was eliminated with that behavior. Not that he was gaining any ground in that area before he pulled that stunt, because hes too secretive. I don’t find secrecy intriguing; I find it offputting. It raises red flags for me.

So I’m still single. What makes me a powerful woman is that I’m perfectly content with that. Whatever is meant to be will eventually be, no need to rush it.

SYW 8/28/18

It’s been a long time since I’ve done this, so here it is!

Do you prefer eating foods with nuts or no nuts? I only actually like peanuts, so I don’t put them in much. Although I love peanut butter!

Do you sleep with your closet doors open or closed? Currently my closet has no door so I have to say open lol

Are you usually late, early, or right on time? I’m getting better at being on time, but late is my normal. Not too late, but always a few minutes. Usually close enough to be frustrating to me!

What did you appreciate or what made you smile this past week? Feel free to use a quote, a photo, a story, or even a combination. Its been a week of ups and downs for me, but I enjoyed going trick or treating with my son. There were a bunch of us actually including his stepmom, his half brother, her sister with her kids, my friend April and her two kids as well. We went to my sisters a couple times, and it was great seeing her too! I’ve also continued getting to know my new man and that has been very pleasurable indeed!

Emotion Returns

She sits alone, fingers lingering on the keyboard while her eyes stare at the blank page in front of her.  What to write about?  So much to catch everyone up on after her long hiatus!  Emotion has been very busy working on herself and moving her life forward; there is so much to say about how she’s arrived at this moment and this place.  She closed her eyes for a moment, then opened them and began typing…

Happiness abounds. Words that, until a couple months ago, she never thought she would truly believe again.  Our beloved Emotion has learned to love herself in ways she never did before, and has gained a confidence she never had in her life previously.  She feels peaceful inside; being alone no longer scared her, she stopped reaching for the nearest hand to hold, and she stopped looking back to the past.  After all, some things are better left behind.

As soon as she realized she could make herself feel the contentment she’s always believed came from others her life took a drastic turn.  She started sprinkling her work with “play dates” with friends and her kiddos.  She took a road trip to Quebec solo to visit friends.  She started really taking care of herself, for herself.  She still struggles with food, but she’s working on it.

And she started dating again.  Emotion doesn’t need a man in her life, but why not find someone to enjoy her down time with?  She’s affectionate, she’s outgoing, she enjoys people so why not give life a chance to send her another Mr. Right?  Yes, she’s aware that her life has been a series of “Mr. RightNows” but ultimately she grew with each one and is even friends with a couple of them still.  She has limited time, but that has weeded out quite a few of the Mr. NotQuiteRights.  The benefits of her workload are not only the extra income, but also the way it makes demanding men reveal themselves.  With her newfound confidence she doesn’t bow down to the demands of “make time for me” because she knows she needs to keep her hustle prioritized higher than a mans ego.  She’s also become very picky.  A year alone with nothing to do but work on yourself and reassess your needs and desires has that effect on you.

Amazingly enough, she met someone.  Someone that may be Mr. Right, it’s early yet but time will tell.  He’s respectful of her work habits, appreciates what she does.  He’s understanding that her children come first and has even expressed that he likes that fact.  He’s friendly, funny, laid back, spontaneous.  All qualities she needs in a man.  He is learning about her and thus far seems to appreciate her uniqueness.

Emotion says she is weird.  She no longer means that in a negative way.  She is weird, but in her mind weird simply equates to not being stereotypical and there is nothing wrong with that.  He isn’t bothered by her particular brand of weirdness.  Then again, it’s still early!

In her experience he is unique as well.  He’s very straightforward and honest, and it’s quite a lovely and refreshing change!  He has shrugged off all of the “warnings” Emotion has mentioned, replied with jokes that all mean the same thing: I can handle you.  And she thinks he can.

It’s so odd for Emotion though.  He isn’t trying to rush things.  No talk about moving in together in the future, no talk about where exactly this is leading, no expectations, no pressure.  She is able to simply evaluate her feelings towards him as they talk, make her decisions without the old carrot on a stick guiding her to the happily ever after she always wanted before.  She knows that was her weakness.  Silly Emotion, wearing her heart on her sleeve for everyone to see, was easily led down the paths that were chosen for her by Mr. RightForTheMoment so many times before!  That Emotion, the Emotion that wasn’t quite confident enough to stay alone, chased those carrots as though it was the only food she’d ever have, never realizing she was running through a garden.  This Emotion, the emotion that prefers to stay alone unless a man can show he’s worthy of her precious free time, has no interest in carrots dangled.  This man doesn’t seem to carry any carrots in his pockets, and if he had a stick he would probably sharpen it into a shank and give it to her to use for protection.  It’s endearing really.

Her heart skips a beat from time to time when his texts hit home for her.  Sweet texts that come from the heart, the same type of texts she’s always used to convey caring.  Simple things, like asking if she’s made it home safely.  Little things that let her know she’s on his mind.  He also started right from the beginning with the two texts that she always felt were most important, most indicative of caring: good morning and good night.

Our silly little Emotion believes those two texts to be key.  A good morning text says “I’m thinking of you when I wake up, wishing I could see you sitting across the table as I drink my morning coffee” (or in this case tea).  A good night text says “I’m thinking of you as I settle in for the night.  As the weight of my day falls away and the peace of sleep draws near, my mind turns to thoughts of you.”  She is actually quite easy to make happy, our silly little girl!

Yet she’s not rushing to proclaim it love.  He’s not from her past, not someone she’s known for years.  She needs to get to know him, to determine that they will be compatible, before she proclaims it love.  He needs to get to know her as well.  As much as Emotion is quite happy with the random person she is, she knows he has not had nearly enough time yet to explore her depths and decide if she is actually right for him.  But he’s on her mind quite often throughout the day, which he probably knows based on the amount of texts she’s sending him.  She’s been trying to think of a name for him for this place, so you dear readers can know him too, but thus far he’s defied a simple label.

With Logic it was easy because no matter how much he tried to reflect Emotions emotions, ultimately every decision he made and every action he took was based on stripped down logic.  Emotion was easily able to name herself because ultimately she’s always been emotions formed into a human shape and given life.

But this man… this man is not so easily defined.  He’s handsome, he’s adorable, he has personality shining from him, he’s down to Earth, he’s realistic, he’s intelligent, he’s well traveled and well mannered.  He needs a name, but Emotion will have to wait for the name to present itself.  She wonders if his name will be Mr. Right?

He makes her heart warm.  He makes her pulse race.  He makes her smile, no matter what is going on.  He’s almost always on her mind.  He’s currently sound asleep, blissfully unaware that Emotion is sitting here evaluating her heart in writing for all of her dear readers to read.  But he would be suggesting she get some rest, because he’s also nurturing.  With that in mind, she will try to rest.  Emotion lives her own life, but she also admits when someone else has a better idea than her!

Emotion has returned.  This time, however, she is not afraid to feel.

Full Moon Ramblings

I’ve been doing a lot of thinking lately; more than usual. I’ve come to realize how private I have become, and how much I like that at the moment. I share enough of myself to make sure people know I’m alive and to allow people to see that my world is still spinning, but I’m no longer the open book I was.

I wonder if perhaps I’m becoming too closed off, too private, to the point of isolation? I know I’ve restructured my thoughts and my desire to share myself has changed. Part of that can definitely be attributed to what’s going on with my heart (emotionally, not structurally). I don’t know that I genuinely understand why one relates to the other, but it just feels right when I say it so I know it’s right.

Part of it can be attributed to the unwanted attention I’ve received, primarily from people I know through cycling (despite not having seen them in real life in over two years). I wonder if my openness has made these men feel like they know me better than they really do and has contributed to their willingness to say inappropriate things to me? I know their unwelcome advances have definitely contributed to my lack of desire to attempt cycling this year. I think I would have taken the chance with my heart if it weren’t for the risk of encountering someone that has been lewd in messages to me. I could delete them off Facebook, and have considered it, but I don’t want to cause a ruckus by doing so. The life of a woman: faced with inappropriate behavior by men, we still have to consider the repercussions of preventing further inappropriateness.

If you asked me who I considered friends, I could give you quite a list of men and (mostly) women I respect and appreciate the friendship of. But I don’t do friendship like “normal” people. Most of my interactions with most of these people are digital. I text, I FB message, I Snapchat. I’m not huge on phone calls and honestly face to face interactions are wonderful but not the deciding factor for me in if I consider a relationship a friendship or just acquaintanceship. I just appreciate people that are as busy as I am but still want to say hi sometimes.

I’ve discovered, in my self evaluation and remodeling for lack of a better descriptor, that I no longer have any one person that knows everything current about me. I’m not upset or sad by that, and I hope not to upset or sadden anyone else with that knowledge. Maybe I should feel some strong, negative emotion about that fact but I don’t. I feel that different people know me differently so it makes sense that they each know different parts of what’s going on with me. I don’t have anyone in my life right now that I feel needs to know everything that is going on; nor do I have anyone in my life right now that I feel has the desire to know some of what I withhold, at least not with pure intentions. I feel like that statement will upset some people and I regret that, I truly do, but it’s reality. We all have thoughts, feelings, worries, and concerns that we only share with those closest to us in all ways, and right now I don’t have that person or persons in my life. Of course if anything were to happen and my life looked into like an episode of CSI there are enough people out there with the bits and pieces of me that the actors playing detectives would be able to paint a fairly complete picture of my life still! 😜

Sometimes I feel alone in a crowded room. Sometimes I feel overwhelmed by people if there are more than two or three people involved in a conversation with me. Mostly I feel cared about just the right amount by the electronic interactions I have.

I have my secrets. I have my untold stories. I have my friends. I feel like I can have all of that and be okay.

And one day it just hit her

Enough is enough.

She decided to stop apologizing for being herself. She liked who she was; she wasn’t everyone’s cup of tea but she was fine with that.

She decided to stop sugar coating everything for everyone. Sometimes the truth is hard to speak, and harder to hear. But sometimes it needs to be said, it needs to be heard. If the truth hurts then change yourself so the truth changes.

Most importantly she decided to stop using self deprecation to deflect unwanted advances and attention. She isn’t perfect, she isn’t a model, but she isn’t ugly or a terrible person either. It is not her responsibility to spare other people’s feelings at the expense of her own.

Besides, history has shown that this doesn’t work. In fact, it seems to have the opposite effect. Men seem to interpret her self deprecation as low self esteem and become even more aggressive in their unwanted advances and she has decided enough is enough. She doesn’t appreciate the increasingly brazen messages, and she certainly doesn’t appreciate the downright lewd messages.

She deserves better than that.

She deserves respect. After all, there can be no love where there is no respect.

Enough is enough.

Today is the day.