My heart hurts…

My heart hurts tonight…don’t worry, my metaphorical one this time.

A friend was telling me today about his struggles with his young adult daughter, who has obviously become associated with “the wrong crowd” and has been making some really poor choices, almost definitely involving drugs.

All I could do was look at him and say “I know”. I could see the pain in his eyes, literally feel the hurt permeating the air around him, and I just wanted to cry for him…because I DO know. I know that hurt. I know it so well.

That hurt, the one that says…

“I just want to help you.

I’m trying.

I’m giving, and giving…and giving,

I’m loving.

All I get in return is lies, sneaking around, insults and threats.

What more do you want from me?

What am I doing wrong?”

As much as I wish I could, I know from experience that there is nothing I can really DO to help him. So I just listened, because I know how much I needed someone to listen when that was me. Then I told him the things that, while seemingly cliche and obvious, are what I know are the answers to the questions going through his head…

“You can’t fix this”

“This is NOT your fault”

“You didn’t do anything wrong”

So my heart aches tonight, because this time last year I was feeling every single one of those things about my husband…and I know how much it sucked, I can’t even begin to imagine how much harder it would be to have it be your child.

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Optimism vs. Realism

I was having a discussion with a friend today about my health and the prognosis of my many conditions; he asserted that I could and would get better whereas I pointed out that I have been continually getting worse for my entire life and that realistically the prognosis isn’t good.

Sure, I can treat my lyme disease with tons of antibiotics for the next several years, and if I’m lucky I’ll put it into remission, but what kind of permanent damage will be left at that point?

We all know that my heart will never be the same after 2 surgeries and many, many episodes of SVT/Vtach which causes damage to the heart muscle.

I have developed arthritis in several of my joints, including my hip and hands. I also basically have the spine of an old person, with a type of arthritis that generally only occurs in the elderly. This is a degenerative arthritis, as well as I also have degenerative disk disease. “Degenerating” in and of itself implies that it will get worse over time, right?

So my friend’s argument was that if I tell myself that I won’t get better, then it will become a self-fulfilling prophecy and I never will…such an optimist, he is. 🙂 My point is that if I go through life expecting to get better, when it doesn’t happen that will be too difficult to bear…not to mention the point that all the facts point to me continuing to get worse, not better.

Call me a pessimist, but it’s just how I feel.

I understand my friend’s point, I really truly do, but it’s one of those things that is much easier for him to say since he is not in the same situation. On one hand I wish that he could spend a little time in my body to experience what I feel every day, maybe then he wouldn’t be so quick to chastise me…but on the other hand I would never wish this on anyone, especially not someone I care about.

I’ve said this before, but I’ll say it again, living with this amount of pain every single day changes a person…it makes you sadder, angrier and pretty much dead inside. It takes away pieces of you until you don’t know who you are anymore. It makes you not want to go on living. (Disclaimer: I AM NOT SUICIDAL. Please don’t freak out)

Does that mean that I take such a pessimistic view of my prognosis because I don’t WANT to go on living like this? Maybe (I mean, really, who WOULD?). Does it mean that want that to become a self-fulfilling prophecy? No, definitely not.

I WANT to get better. I do.

I can’t tell you how badly I want to live a normal life. I want to go to medical school and be an incredible doctor who heals people. I want to exercise, to train in Tae Kwon Do again, to go running and lift weights. I want to have children, without worrying about what sorts of horrible diseases I will pass on to them; then I want to be an awesome, fun mom, with energy to make great memories with her kids. I want to wake up every morning and NOT be in pain. I want to go to the store without needing a handicapped parking spot, headphones, or a wheelchair; then I want to walk out of the store without wanting to collapse or cry. I want to go out, dance and drink and have fun like most people my age do. I want to go to the doctor and have her find nothing wrong with me. I want to date, without worrying if the prospect of being with a sick girl will make him run for the hills.

I want to be healthy.

All of these things most people take for granted, probably including my friend, yet most of them are things that I will never be lucky enough to have.

Even if I were to put my lyme disease into remission, I would always have to worry about passing it to my children, I would always have to warn potential husbands about the possibility of it coming back, and always be afraid of overdoing it with exercise or catching a cold and causing it to come back. Then of course, there is always the relatively large risk of it coming back, and I sending me right back to where I am now. Not to mention whatever lasting, irreversible damage has been done.

I will always have to live in pain, that’s just the cold reality of my life. Even with lyme in remission the damage to my back will never be repaired; even if it never got any worse, it would still prevent me from doing many things I want to do and cause me pain for the rest of my life. I cannot go through life making plans and having dreams that will be unattainable as long as I have pain, because I will ALWAYS have pain. Sure, I could strengthen my muscles to minimize further damage or unhealthy movement of my spine that causes pain, I could get pain relieving injections and possibly even have surgery to compensate for some of the damage, but I will still always have pain. I will never be NORMAL.

I know, I’m being really depressing tonight, but this is the reality of my life. While my friend is overly optimistic, I am a realist. I would rather look at the reality of the facts, and prepare myself for the worst, than get my hopes up for something that is unlikely to occur. As for that becoming a self-fulfilling prophecy, he has a point, it might. All I can do about that is continue to strive for the best outcome I can get, I just refuse to expect for that outcome to be unrealistic.

My friend said he didn’t believe me that I feel this way because I continue to try to get better by taking massive amounts of antibiotics, going to doctors appointments and having surgeries. I won’t lie, it does make me wonder why I’m trying. Why do I bother? Why put myself through all of these treatments which are expensive, painful and time consuming if my best hope is a temporary remission and a painful life, and even that is far off and possibly unlikely? What’s the point?

You wanna know the truth? I have no idea. I told my friend that I try because I’d rather not die, which is true, and the scary truth about untreated lyme disease. I also appreciate the fact that my not trying would hurt people I care about…unfortunately I understand that all too well. I also have a healthy concept of the fact that while I may never be normal, I can be “better”; I do not always have to feel as terrible as I have lately. Even given those reasons I still don’t completely understand; I guess I try because that’s just what one does, you get a diagnosis and you take the treatment…but that doesn’t change how I feel about the whole thing.

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Something strange is happening.

Something very strange is happening. Something that has never happened to me before.

I want to be alone. 

I mean, I’m totally an introvert, people have always worn me out…but I’ve never let that stop me. I always wanted to be around people, talking to people, doing things, dating people. Not anymore.

I see my friends occasionally, I text a lot, and talk on the phone sometimes…but for the most part I’m pretty much ok with just being by myself. As for dating, forget it; a teeny tiny part of me wants to, but not really.

I even find myself occasionally annoyed with the fact that people keep texting me! (“uhm, hello, who are you and what did you do with Addie Marie?!”)

I sort of want to date, as in spend time with a nice guy once in a while…but share my space? No way. Be obligated to see or talk to someone? Absolutely not. I’m not even sure I really want to deal with every thing dating entails, getting dressed up, small talk, possible physical activity (ie. walking, get your mind out of the gutter!), sitting still in cold movie theaters/restaurants, etc. Then there’s the whole issue of involving someone else in the train wreck that is my life right now. No thanks.

When I met my husband I moved in with him less than 6 months later…which meant that for the last 4 1/2 years I have never ever had any alone time. Now I can’t fathom doing that, the thought of never having alone time makes me want to run away.

This is a very strange sensation for me, but I think I’m liking it… 🙂

 

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The story of the cracked pot

By Sacinandana Swami

A water bearer in India had two large pots, each hung on one end of the pole he carried across the back of his neck. One of the pots had a crack in it, and while the other pot was perfect and always delivered a full portion of water at the end of the long walk from the stream, the cracked pot arrived only half full. This went on every day for two years, with the bearer delivering only one and a half pots of water to his master’s house.

Of course, the perfect pot was proud of its accomplishment and saw itself as perfectly suited for the purpose for which it was made. But the poor cracked pot was ashamed of its imperfection and miserable that it was able to accomplish only half of what it had been made to do. After two years of what it perceived as bitter failure, it spoke to the water bearer one day by the stream. “I am ashamed of myself and I want to apologize to you.”

“Why?” asked the bearer. “What are you ashamed of?”

“For the past two years, I have been able to deliver only half my load because this crack in my side causes water to leak out all the way back to your master’s house. Because of my flaws you have to work without getting the full value of your efforts,” the pot said.

The water bearer felt sorry for the old cracked pot, and out of compassion he said, “As we return to the master’s house, I want you to notice the beautiful flowers along the path.” Indeed, as they went up the hill, the old cracked pot took notice of the sun warming the wildflowers on the side of the path. The pot felt cheered.

But at the end of the trail, the pot still felt bad because it had leaked out half its load, and again it apologized for its failure. The bearer said to the pot, “Did you notice that there were flowers only on your side of your path, but not on the other pot’s side? That’s because I knew about your flaw and took advantage of it. I planted flower seeds on your side of the path, and every day while we walk back from the stream, you’ve watered them for me. For two years I have been able to pick these beautiful flowers to decorate my master’s table. If you were not just the way you are, he would not have such beauty to grace his house.

For the majority of my life I have heard this story every year at a martial arts camp, and it has always tugged on my heart. However, the older and sicker I get, the more it speaks to me.

Tonight, as I sat here trying to write the quintessential “Happy Thanksgiving!” post, I just couldn’t do it. I’m thankful, really truly I am, for so many things…I’m just feeling like a cracked pot right now.

It’s been a hard few weeks, I’ve been in a lot of pain and spending a lot of time in the “deep dark lyme place” of sad emotions.  I’ve had a lot of stuff going wrong with my heart, which I will write about one of these days when I have energy for that, that make me very stressed and angry.

Last weekend I had a flat tire on my car, so I set out to change it. I’d never done that before, but I knew technically how it should be done. With my sister’s help to lift things I managed it…and then was miserable for 3 whole days afterward. I just wanted to be able to do something for myself, to know that I could take care of myself in an emergency…and I did it, but I really should not have. I want to be able to do normal people things without hurting myself or feeling so sick I want to die.

I don’t want to feel like this anymore, I don’t want to be in pain anymore. I don’t want to be this sad person. I used to feel like a strong person, like I could cope with anything and still be a happy, positive person…not anymore. I’m angry that lyme and this pain have taken that away from me.


 

“When I was treating aids, none of the patients wanted to die, yet they did. Now, treating Lyme, the patients want to die because of the pain, but they usually can’t…Lyme takes you to the edge of death and leaves you there” Dr Jemsek.

Dr Jemseck gets it. That is exactly how I feel lately.


 

So tonight I will read the story of the cracked pot, and try to remind myself that I am simply a cracked pot and that somewhere there are flowers that I will be able to water with my flaws.

http://www.sacinandanaswami.com/en/s1a38/wisdom-stories/the-cracked-water-pot.html

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What you should know about chronic pain

This article has been circulating in the internet world of chronically ill people, and while I think it’s a nice letter, it kind of bugs me. A lot of it is very true, I guess I just sort of feel like that’s not really what I would want people to know about living in chronic pain.

I guess first I’ll take this list and comment on it, then I’ll add my own things.

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. – Super true for me, and I didn’t really think about it until I read this letter. I generally can’t look people in the eye when they’re talking, not because I don’t want to, but because it’s way too much stimulation to look, listen, think, AND feel the pain. 

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. – Yep, exactly what I was talking about.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward. – YES. I, as a general rule, don’t lie…if you ask “how are you?” you’re going to get a real answer, how long it is depends on who you are and whether I think you actually care. If I don’t think you care (or I don’t have the energy for a real answer) you’ll get something like “I’m managing” or “just the usual”. 

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. – The biggest thing anyone can do for me when I’m in pain is to just be with me…I hate to be alone, I get very emotional when the pain is very bad. I need distractions and to know someone who cares is there. 

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. – This is always a big problem for me, my worst pain is a very vague, almost impossible to describe pain that just radiates through my whole body. It frustrates me to try to describe it, and the best I’ve been able to come up with is “every individual cell in my body is screaming in agony”. I always get strange looks from people when I say that though, and I know no one understands what I mean…which just frustrates me more. 

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.


 

1) The biggest, most important thing I want people to know about what it’s like to live with chronic pain is that it never goes away. Think about that, every single second, of every single day, of your entire life. Sure sometimes it’s worse than others, but it’s always there…just because I’m acting fine and normal, does not mean I’m not in pain. Most of the healthy people I know lose their minds when they have a toothache, a sprained ankle, a headache, or the flu…imagine all of those things, at the same time, plus more, every single day. Now you have a teeny taste of my life.

Think of a time that you injured yourself, (like a sprained ankle or something) some doctor somewhere probably asked you to “rate your pain on a scale of 1-10, with 1 being no pain and 10 being the worst pain you can imagine”, right? I really, really hate that question, and I get asked it ALL the time. I have a friend who used to play a game with me, every time she saw me she would try to guess what number my pain was at…she was generally right too, partly because she’s awesome, and partly because my number is pretty much always between 5 and 8.5. For 2 reasons, first of all, days under 5 almost never happen. Second, I never rate anything a 10, ever. In the movie The Fault In Our Stars, the girl says “I was saving my 10”, and that’s exactly what I’m doing. People with chronic pain will understand this, but it can always get worse. I never rate anything a 10, because I understand the fact that there will always be something worse than the worst pain I can imagine. I only rate things a 9 that send me to the hospital; I’ve only had a handful of 9s in my life. So basically 8.5 is the worst possible normal day I could have, and I have quite a few of those.

I really wish I could make you understand; I would never wish this on anyone, but sometimes I wish people could just spend a day in my body, because then they would understand what this pain is like. It’s brain-numbing; when it’s really bad I can’t think about anything else, I can’t do anything else except lay still and be in pain. Breathing is too much work, talking is too much work, thinking is too much work. I can’t eat, I can’t sleep, I can’t cry. Just existing is too painful. That’s an 8.5…maybe even a 9. It strips away who you are; I really think it strips away pieces of your soul.

It’s frustrating, I want to be able to do normal-person things…such a stupid little thing like walking to the mailbox, standing long enough to put my make up on (5 minutes), or sitting through a meal will cause me to go from a 5 to an 8.

2) The other huge thing I want people to understand is that I am ok. I know I make all of this sound like the worst thing that could possibly happen to someone…and I’m not gonna lie, it’s pretty terrible, but I do not hate my life. Actually, given the choice I don’t think I would change it…as crazy as that sounds. I’m not angry, I’m not bitter or hateful. I don’t need to turn to religion to find an explanation for my suffering, and I don’t need to make myself feel better with platitudes like “we are given only what we can handle” or “everything happens for a reason”. While these and others may be true, I don’t need to use them to make the fact that I am sick ok. However, I am human, I have my bad days too; occasionally I get sad, mostly about the things I wish I was able to do, and I sometimes get frustrated or pissed off. When that happens I just need a friend, I need to whine and complain about how much it all sucks. As a general rule though, I’m fine.

3) Relax! I won’t break. I don’t need you to do everything for me. I’m not going to get offended if you say whatever it is you think will upset me. As a general rule, I don’t need anything from you, other than for you to act normally and be my friend.

I meet a lot of people who are amazed at what I deal with every day, who don’t understand how I have such a positive attitude and accept the way my life is so well. I have no answer for those questions, other than I don’t know any different…I don’t remember what it feels like to not have pain, so I think that makes it easier, but it’s also just the way I am.

 

 

http://lifeinpain.org/node/2151

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“I love you present tense” – The Fault in Our Stars

“I’m thinking ‘bout the way people fall in love in mysterious ways, maybe just the touch of a hand, me I fall in love with you every single day, and I just wanna tell you I am…” – Thinking Out Loud, Ed Sheeran

I am currently obsessed with this song, which is surprising given it’s romantic nature, something I haven’t been able to tolerate much of since my separation from my husband.

Like the song says, I have been thinking a lot lately (surprise surprise) about love, and feelings in general; why we have them, what dictates who we have them for, and how society views our feelings.

Chances are most of us have had one of those moments, you know the ones, where someone makes your heart flutter and your head feel faint. Most of us have had someone we just couldn’t stop thinking about, that we wanted to talk to all the time and spend every waking second with. Some people term it “puppy love”, although I’m not entirely sure what that means.

What is it that decides who we fall in “puppy love” with? Of course there are the usual stories, the cute guy from your English class, or that really sweet guy you met on that online dating site…but what about the stories that break the mold? The married man you can’t stop thinking about, or maybe you’re happily married and can’t stop thinking about someone other than your spouse; that person you can’t explain why you feel differently about than the rest of your friends, even though you have never considered yourself gay before; the infamous unrequited love story; or an abuser who only hurts you. What is it that sends our hearts into these painful situations? We usually know so well that we should not fall for these people, but it doesn’t matter.

Why?

According to society as whole, these scenarios are ones where we should not have feelings…yet it happens anyway. It’s out of our control. We can tell the feelings to go away, although I don’t know about you but personally that doesn’t usually do much good.

Married people are “off limits”, we use derogatory terms for people who fall for married people such as “the other woman” or “mistress”; and vice versa, married people are supposed to be faithful, and those who admit to having feelings for someone other than their spouse are termed “cheaters”, “scum bags” and any number of other names people (usually women) have made up. People who admit to having feelings for their heterosexual friends are often made fun of, and it’s not uncommon for the friendship to fall apart because of it. We all know the tragedy of the unrequited love story, at least these people are not usually made fun of, instead they are pitied…which I’m not sure is any better. People who stay in abusive relationships are often blamed, said to be at fault for the abuse since they choose to stay in the relationship.

We all know this stuff, I’m not telling you anything new or shocking…so why do we continue to find ourselves in these situations? I have personally found myself in every scenario I mentioned above, not because I was oblivious to the impossibility and almost certain heartbreak of the situations, but because my heart didn’t care.

Why is that? Why don’t our hearts care that situations like these will almost certainly break us? Even better question, why do we as a society look at people who find themselves in these situations in such a negative light? We know we’ve pretty much all been there at least once…yet still the stigmas exist.

Some say that these people are just desperate for love; that they’re lonely and sad. Others look to old adages like “the grass is always greener on the other side of the fence” and “we always want what we can’t have” to explain away situations like these. While I agree that sometimes these are accurate, I assert that this is not always the case. There have been times where they were definitely not true for me, personally.

So I’ll ask again, why?

A quick Google search for “what decides who we are attracted to?” yields 48,200,000 hits on topics ranging from “Your brain on speed dating” to articles listing “5 Insignificant things that determine who you have sex with”. Apparently I am not the only one wondering about this topic. The list of insignificant things includes things like the tilt of your head, the length of your ring finger and the number of scars on your face as factors in who we are attracted to. (…if you say so…) While the article “Your brain on speed dating” utilizes fMRI imaging techniques to look at what areas of the brain are most active when a person is viewing a potential date. Based on this information they claim that there is a section of our brain that forms a, rather shallow, first impression of the person followed by a second area that evaluates the persons compatibility with ourselves. Alright…that’s an interesting tidbit of information, but neither of those really answers my question.

So here are my thoughts on the matter…

We all need to love and be loved; it has been scientifically proven that without love we will die (for real, not being dramatic).

I think something in our soul recognizes something in someone else’s soul that draws us to that person…sometimes it’s temporary, sometimes it’s lifelong. Either way, it’s beautiful and wonderful, even if it ends up hurting, because our soul needed to encounter that person’s soul. I think often(but not always) there is something for us to learn from these situations, and our souls generally tend to keep us there until we’ve learned it; or sometimes there is something we are supposed to teach the other person. Although other times there is no rhyme or reason to it, it just happens. It’s like our souls have magnets, and sometimes we encounter someone who’s soul has an opposite magnet and we are automatically drawn together by that magnetic force. Sometimes our magnets stick together for a long time, and other times they simply touch and bounce off of each other again. Sometimes they never touch at all, but simply come close to each other and then move away.   

If you look at it as I do, there are no mistakes when it comes to love as long as you follow your soul’s pull. Maybe this is a cop out, maybe it’s me justifying the “mistakes” I’ve made (and if you look at them as mistakes, there are a lot of them); maybe it’s me trying to soothe the heartbreak of my recent divorce by telling myself that I did not make a mistake in marrying him in the first place…but I don’t think so.

I’ve loved hard and deeply, I’ve trusted my soul (for the most part), I’ve been true to myself and honest even when it hurt…and I’ve hurt a lot; I’ve shattered into a million pieces, and then put myself back together. In the end, though, I’ve followed my soul…I haven’t let society’s opinions of who I should and shouldn’t love stop me from loving anyway. I’m proud of that.

Love is incredible, it’s magical and wonderful and mysterious; it’s hard and scary and painful too. It doesn’t make sense, at all, and that’s part of the beauty of it.

I have come to the realization that, as painful as it is, our hearts feel what they feel and there isn’t really a whole lot we can do about it. I started this post wishing that I could know why my heart betrays me like this, but I’m ending it with the sense that understanding that would take away the magic that is love…and goodness knows I do not want that.

Articles referenced in this post:

http://www.cnn.com/2009/LIVING/personal/04/13/o.laws.of.sex.attraction/index.html?_s=PM:LIVING

http://www.cracked.com/article_19663_5-insignificant-things-that-determine-who-you-have-sex-with.html

http://www.dailymail.co.uk/sciencetech/article-2229190/Study-reveals-parts-decide-romantically-attracted-to.html

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My poor “broken” heart

It’s been a rough couple of weeks, I haven’t felt up to writing about it but I think I’ll try now.

In my post Salt, Socks and Heartbeats  I told you all about the heart conditions I had been diagnosed with, and that I would need to have a pacemaker placed. Well fast forward a couple of months, pacemaker is in and working fine, but here I am writing yet another post about my “broken” heart.

I was in the emergency room twice last week, both for heart issues. The first time was kind of crazy, I laughed about it because it was like straight out of the movies. My heart rate was very high so I drove myself to the ER and walked in, told the woman at the desk that something was wrong with my heart and was immediately plopped in a wheelchair, rushed to a bed, hooked up to an EKG machine….the next thing I knew there was a doctor and 5 nurses running into the room. The doctor stopped short, took one look at me talking to the tech and said “you’re STABLE?!”…”uh, last time I checked?”…

So they rushed me to a private room, and started hooking me up to all kinds of monitors. They had called a “code” like on tv, because every nurse in the ER was in my room running around like I was dying! They hooked me up to the crash cart! (That thing that they use on tv that they yell “clear!” and it shocks you).

Long story short, they had to give me adenosine, a medication that temporarily causes ventricular asystole (an episode of no cardiac activity) and is used to reset the heart and pull it out of dangerous arrhythmias. In normal person words, they stopped my heart temporarily and lucky for me when it restarted it decided to behave itself and beat like it’s supposed to.

A check of my pacemaker showed that my heart rate had been an average of 223, with a maximum of 273, for an hour. That is NOT good for your heart.

The ER doctor was very nice, and did not make me spend the night in the hospital on the condition that I see my cardiologist the next day. At my appointment my cardiologist said that I was not on nearly enough beta blocker (medication to lower your blood pressure, but also lowers heart rate and can help prevent arrhythmias), so he doubled my dose.

Fast forward 24 hours and I’m back in the ER. This time it was an average of 242, with a maximum of 273, for half an hour. My poor poor little heart. :[

Again, back to my cardiologist I go…this time I insist that the beta blocker (obviously!) isn’t working so we switch to another one, that is a much higher dose and I take it twice a day instead of just once.

The good news is I have managed to make it 6 nights so far without a trip to the ER (isn’t sad that I’m counting?).

The bad news is my heart is still acting up…it’s doing some sort of strange arrhythmia thing as I write this, which isn’t ER worthy, but doesn’t feel good. My poor cat is sleeping on my chest and keeps jumping because she feels my heart do something strange.

My gut feeling is generally right…and it says I am headed for at least one more surgery, maybe more. That’s a lovely thought. And no, I’m not being dramatic, depressed, or whatever other way you want to minimize what I’m feeling. I’m a realist, and I’ve been sick long enough to know my body and when something is really really wrong; and this is bad. 

I hate this. I hate that every time my heart does something weird (which is ALL the time) I panic, “are we running to the ER again?” “is it going to stop?” “what if this time something really bad happens?”.

Tonight I am sad that I feel like any minute now my body will turn on me again.

I’m angry that I underwent a (really terrible) surgery that was supposed to fix things, and it didn’t. Now I may be looking at another (probably terrible) surgery that may or may not actually fix it this time.  I’m angry that my primary care doctor basically “called” this 2 weeks after my pacemaker surgery, when she questioned the cardiologist’s decision on which device to give me…if she was right all along I am going to be furious.

I’m overwhelmed with all that needs to be done now, I am going to get a second opinion from a different kind of doctor who specializes in electrical disorders of the heart (probably where I should have been going all along), but that means tons of paperwork, going over my entire medical history, and the stress of wondering whether or not he will freak out over my lyme diagnosis and antibiotic list.

I’m scared that it could happen again at any moment. I’m scared that I know that having heart rates that high is damaging to your heart, so what kind of damage has already been done? And how much more damage has to be done before we can figure this out and stop it?

This sucks.

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Leibster award

liebster-award

I was nominated for the Liebster award by Rachel at http://collegeoncrutches.wordpress.com/ (for some stupid reason it won’t let me do the nice links 😦 If anyone wants to help me figure that out, feel free please!). She is such a sweetheart for nominating me, I’m so honored that she likes my blog! If you haven’t already, go check her blog out! It’s raw, real and awesome! It’s one of my all time favorites 😉

 

Instructions for presenting a Liebster Nomination:

-Thank the blogger who nominated you.
-Post the Liebster Award image on the acceptance post and/or as a widget.
-Share any 11 facts/things about yourself.
-Answer the 11 questions given.
-Nominate other bloggers
-Compile 11 questions for your nominees.
-Let your Nominees know by commenting on their blogs.

 

11 facts about me:

1. I sleep so hard that I’m borderline comatose
2. I love some weird food combinations (fried egg on peanut butter, raisins in cottage cheese, skittles in brownies, maple syrup on scrambled eggs, you get the idea…)
3. I am closer to my cousin than I am my sisters
4. I have worn glasses since I was 8 years old
5. I find sleeping during the day, with sunlight filling the room, super relaxing
6. I always, always, ALWAYS wear at least 2 shirts at once
7. I only wear “real” shoes a handful of times a year…I’m totally a flip flop girl :]
8. I never ever brush my hair
9. I have a habit of listening to the same song on repeat, for weeks and weeks on end
10. I only dance while cooking
11. I cannot stand the feeling of wet paper, I seriously will not touch it

Questions from College On Crutches:

1. Where is the most interesting place your blog has been read?- I noticed some views in Pakistan a few weeks ago.
2. What is your favorite libation?- Well when I am allowed to drink (which is not anytime soon) I am a big fan of a nice sweet white wine, or a Southern Comfort and Coke. :]
3. Kindle/ipad or “old fashioned” book?- “Old fashioned” for sure. It’s just not the same on a screen.
4. If you could do anything in the world what would it be?- Become a doctor and heal people.
5. When did you decide to start blogging and why?- Almost a year ago (note to self: check on that date), and I’m not really sure why. I think something deep down inside me knew that my life was about to be flipped upside down and I would need the outlet, and boy was it right.
6. How do you feel about sharing your story with the internet? Is it fun? Nerve wracking?- I love it. I am very much an open book, there isn’t much I won’t talk about, even to people I don’t know well…but this is different. Here I can write my deepest thoughts, things I don’t want to bother my friends with, or things that just are not meant to be spoken out loud. It is also nice that (as far as I know) there is only 1 person who reads this blog who knows me in person, so I can write what I want and not feel strange knowing that so-and-so knows x, y, and z.
7. What’s your “specialty meal”?- In my family I am famous for my green bean casseroles (a favorite of mine), and my “World Famous Bean Dip” (a 7 layer taco dip)
8. What is your favorite holiday and how do you celebrate it?- Christmas. I find the traditions associated with the Christmas holiday very comforting. I love the rituals of decorating, the family tradition of the Christmas Eve candlelit church service, the opportunity to put effort into picking gifts I know everyone will like, the family time, and the excitement for the coming new year.
9. Who is one person who has changed your life for the better?- I have a dear friend who I think came into my life at just the right time, and who has made the process of divorce and finding who I am without my husband quite a bit easier…although she probably has no idea that she has.
10. What do you do to unwind from a long day?- Meditate, then lay in bed and binge watch my favorite tv shows
11. Who is your favorite author, or do you have a favorite book?- There is no way I could pick just one! Some of my favorites are Little Women, The Scarlet Letter, Anna Karenina, The Scarlet Pimpernel, and pretty much anything Jodi Picoult

Questions for nominees:
This post is taking forever, so just answer those questions ^, or make up your own, I don’t care 😉

Nominees:

http://realwomanshealth.wordpress.com/

http://sickandsickofit.wordpress.com/

http://lindseyslymelife.wordpress.com/

Gee whiz that was long! Have fun! 🙂

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Where o where has my brain gone?

I miss my brain.

I’ve been sick my entire life, but there were quite a few years where I was not “THIS” sick…and I was smart, and funny, and I thought about things. Now? I’ve spent the majority of my waking hours today staring at the wall; I’ve been sitting here for an hour trying to write something worthwhile and I simply can’t. So instead I tried to read, yeah right!

Today I feel worse than usual, which is saying something. It’s probably the IV antibiotics I started last week catching up with me, or maybe the fact that I’ve had a particularly long and stressful week, maybe that’s catching up with me. I’m lacking sleep since I spent 2 nights this week in the emergency room, I’m stressed because my doctor keeps blowing off my concerns and the fact that I keep ending up in the ER, I’m angry about that too. I also probably did way too much housework all at once last night. Whatever the reason, my body and mind have both crashed, and it sucks.

I recently went back to school, which is awesome, but it’s made me realize just how bad my brain is now. I have realized that I don’t remember much of anything. Of course I can remember dates, conversations, when my doctors appointment is, etc. but I cannot for the life of me remember what I read 5 minutes ago or what the professor said yesterday in class. Thank goodness I take awesome notes…a learned skill I’m sure, since this issue has been getting worse and worse over the last 8 years.

 


 

So I wrote this 2 1/2 hours ago, yet never posted it because I’ve been sitting here staring at nothing like a zombie. Where has my brain gone?

 

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Filed under Chronic Illness

Strength in my Scars

I often feel like many of my friends and family don’t understand why I am not self conscious about my scars; why I don’t care if they show and don’t shy away from things that may cause more. This is why. ❤

College on Crutches

**Warning: Scars & Self Harm are discussed. Read on if you wish.**

My body is home to an abundance of scars. Some are easily seen, while others are at the heart level, hidden from view. These scars have a variety of causes. Many are the result of my previous cutting addiction, some are reminders of surgeries, medication reactions, and mishaps from my childhood, and the rest have unknown origins.

I used to be ashamed of my scars. I thought people would judge me if they saw them, so I was always careful to keep them covered. When I was younger and a scar formed on my leg from a bad reaction to a medication, I wouldn’t let anyone see it. For years I covered it with a band-aid, hoping it would simply blend in with my skin. (I don’t think it worked.) When I was older and had marks from…

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