Resolutions

UGH, I do not like this term.

Resolution: “the act of resolving or determining upon an action or course of action, method, procedure, etc.” (Dictionary.com).

The term resolution seems to stink of consistency, or at the very least, the need for consistency. The one thing I am consistent at is INCONSISTENCY!! Well, the good news here is that I am at least consistent with that. I am also fairly consistent with too many commas, parentheses; a plethora of other things including building the world’s largest dust bunny condominium under my bed. Hey…look at that…here I thought I was inconsistent at so many things and it turns out I am consistent in many things, just not things that matter.

I also have to add that I am truly consistent with making resolutions each year; I am also sadly consistent with never following through on even one. Maybe I just like to see them on paper… I will however attempt yet, one more time, to write them down and will make an effort to reach some. Maybe that is my problem; I set myself up for failure each time. Maybe I have too much on my list. Maybe I should just start with: I’ll brush my teeth each morning. Oh…I already do that. OK, maybe I’ll start with…I’ll love Big Handsome for always; poo; I will already do that too… I’m screwed!!

Here are the top ten New Year’s Resolutions via Daily Press:

1.       Diet. This is interesting for someone like me (us). I am rarely hungry and hardly ever have an appetite, so this one is a no-go for me. I would like to, however begin to eat healthier, more fruits/veggies etc., so I guess this can make my list after all.

2.       Quit Smoking. Unfortunately, this does make my list. I am a smoker and do wish to quit. I don’t know if there are any other smokers out there (with chronic illnesses), but it is sooo hard. I must admit that I enjoy it way too much. I would like to see my children graduate, get married and have children, all without the help of oxygen, or worse. This one is going on the list.

3.       Exercise. This is one that I would love to put on the list. I used to run 5+ miles a day (before children). As the years have gone by, so has dwindled the exercise. I know that exercise can be so beneficial and it does make me feel better to some extent. Before I got sick, I was riding my bicycle 9+ miles 5/6 times a week. After I became ill, I had to resort to Wii Fit. This way I could exercise in the comfort of my own home and in my jammies if I so desired. OK, it’s going on the list.

4.       Quit Drinking. Of course “they” mean alcoholic beverages. I’m fairly certain that “they” wouldn’t mean drinking all together! In all honesty, I cannot/will not put this on the list. I know that “they” (the other they) say that we should not drink alcoholic bevs. I will tell you one thing, after a beer or two, I feel almost normal. I try to tell myself that it must be the carbs or something else that makes me feel as though I am not sick anymore. Disclaimer: I am in NO WAY suggesting that anyone begin a regimen of imbibing alcoholic beverages to overcome the symptoms of POTS.

5.       Stop Procrastinating. This does not need to go on my list as I usually do not procrastinate. My motto used to be: “Why do today what you can put off ‘til tomorrow?” However, since being sick, this little tidbit of wisdom has gone out the window. I have to do the things I can do today, because I never know what tomorrow will bring.

6.       Save Money. Again, doesn’t need to go on the list. I don’t spend too much money as I have nowhere to spend it. I don’t drive, so I don’t need gas money. If I don’t drive, there is nowhere to go and hence, no money being spent. I guess I could over spend by buying off the internet, but I am too busy writing this blog to do that! Another one bites the dust…

7.       Go to Church. I would attempt to put this on the list, if it wasn’t for sitting upright for 2+ hours and being around a big crowd and listening to really loud worship music. Don’t get me wrong, I used to go to church every Sunday, loved it, and I do miss it. However, before even being diagnosed I remember sitting in the parking lot telling Big Handsome that I didn’t feel well. He suggested we go home (we only live around the corner, so to speak). I soldiered on, and the whole time I was there I felt like I was going to pass out, hurl or both. Haven’t been back since. I do try to spend time with the Lord and nowhere does it say, I must go to church in order to have a relationship with Him. I think I’ll edit this one to read: I will spend more time with the Lord.

8.       Wake Up Early. Well, this one just makes no sense to me…what for, so I can start feeling crappy earlier??? Half the time, I don’t get to sleep until the wee hours and even then I toss and turn all night in my own sweat. This one’s gotta hit the road.

9.       Stop Cursing. Now this one is just plain funny! Not that I curse all that much, but seriously, even if I were to use another word instead; I would still know what I meant, so why waste the energy? Sometimes a curse word is all I can think of to describe what I’m feeling damn it!

10.   Read the Newspaper. Seriously??? They still print those?? Look, if I wanted to read about everyone else’s problems, I would read the newspaper. Quite frankly, I have enough of my own. I think I’ll edit this one too, to: Read More. This I can handle. I can definitely read more blogs, social networking statuses, forums, medical journal articles and the like.

So 3 out of 10 (with a few edited to suit me)…see what I mean about setting myself up for failure?? I can still try though, and try I will. I cannot/will not promise anything. What is it “they” say: “If you don’t expect anything, you won’t be disappointed?” That’s what I’m going with.

At the very least, I can attempt to evict the dust bunnies, although they will probably just move next door to the bookcases.

Here’s to hoping you all have a much better outcome with your resolutions this coming year!

This Christmas Season

Well Christmas is almost here and this is the first year that I’m actually excited, since getting sick. The Christmas season…such a wonderful time, usually. Thankfully I have had more good days than bad as of late. Before I got sick, the kids and I would go all out decorating the house. They used to love to make a count-down paper chain every year in anticipation of the big day (btw, my eldest (16) made a paper chain for this year, thankfully some things never change). We never did the whole “Santa” thing in our house; I know, some of you probably think my children were deprived,  we don’t see it that way as Christmas has always been the celebration of the birth of Jesus in our home.

This year is the first year since getting sick that I’ve been able to do any Christmas shopping outside the confines of my bedroom. Of course, Big Handsome has accompanied me and it was so nice to get out and about. Don’t get me wrong, I still feel yucky most days, but I’ve learned to push through and try to enjoy the little things.

We were even able to decorate the house, which hasn’t really been accomplished in its fullness for quite some time. The kids decorated the tree after I put on the lights (something that sent me directly to the couch after wrapping the lights around and around and around). They did a spectacular job.

We are looking forward to a quiet holiday spent together as a family. We don’t go away for the holidays any more. We used to visit family every year when the kids were little and we loved it. Now that they are older though (as are we) we love to just stay in the comfort of our own home and enjoy the day together.

This year we will enjoy the company of my father the day after Christmas. He will stay with us for a few days. This will be a bittersweet holiday for us as this is the first Christmas we will spend without my mother who went to her heavenly home this past fall (following seven long years of sickness). We don’t get to spend that much time with my father as he lives halfway across the country, so this will be a special holiday for us none the less.

Richest blessings to all of you for a very Merry Christmas and a Happy New Year!!

The Psychologist (what a JOKE!)

On the way home from the idiotic Second Opinion doctor, I began to think, as many of us do, “Maybe this really is all in my head.” Even Big Handsome began to think this, and why not? I had been to a few doctors that had done ABSOLUTELY NOTHING to help me. I figured what’s to lose? I’ll look into seeing a psychologist, maybe it was just “all in my head”. I began to doubt myself, to doubt all the symptoms I was having; basically beginning to think I was just a crazy hypochondriac.

I made an appointment (after much research into finding just the right one) hoping that this was the answer. I was just an overzealous, highly anxious hypochondriac that might, just might, benefit from a professional psychologist’s perspective.

In my research to find the “best fitting” psychologist; I was looking for a faith-based doctor, one that knew about dealing with chronic illness, and one that was familiar with treating anxiety.

My visits went something like this:

Big Handsome had to take off work early that day to take me to my first appointment (as he has to do for all of my appointments). The whole gang went; we figured that while I was in my session (45 minutes, I think), Big Handsome could take the gems and roam around until I was done. Afterward, if I felt up to it, we could go to dinner together. You see, we live in the boonies, so when we have the chance to go into town, we try to make the most/best of it.

I arrived on time to my appointment albeit a bit anxious. Mind you when I made the appointment and the scheduler asked why I was coming in, I expressed to her that I had a newly diagnosed chronic illness and anxiety issues (at this point, I still did not realize or know that the two are so intertwined as no doctor had ever explained the ANS system to me). I went into the office and began to fill out the necessary although rarely looked at paperwork. Big Handsome had dropped me off and had gone to run a few errands. Forty-five, yes, 45 minutes later…I was still in the waiting room. Big Handsome called to see if I was ready to be picked up only to find out that I hadn’t even been seen yet. So there I am, a patient with a chronic illness that makes it hard for me to sit upright for any real length of time, plus I have anxiety issues that are growing by the minute. SERIOUSLY?!? This was not going well at all. Nothing annoys me more than tardiness (ask my co-op students!). Especially when it has taken all I had just to admit that I might need a psychologist because this might be “just all in my head”.

I entered her office, or what was supposed to be a psychologist office. Really, all I had to go on were TV psychologist’s offices. I was expecting a rather large room filled with dark wood paneling, a mahogany desk, a leather doctor chair and a nice, comfy, large couch in which to lie down with the obligatory tissue box close at hand. What I witnessed was a small, cramped room complete with clutter and tchotchkes everywhere, two chairs, and a comfy looking couch that held not only the doctor herself, but her files, laptop and papers that seemed to have vomitted everywhere. Here I was, a person with a newly diagnosed chronic illness, anxiety issues and self-evaluated OCD tendencies that had been left waiting in a waiting room for 45 unnecessary minutes only to arrive in the office ready to begin straightening it up. Was there a vacuum somewhere close?!

OMG! I was freaking out on the inside. I figured I was there for a reason, so as usual, I suppressed my emotions. That’s what one does in a psychologist’s office right???

First off she asked me why I was there. I told her (what I stated above) to which she picked up her laptop and “googled” POTS. Surprise there, she’d never heard of it. So, she focused on my anxiety. More to the point, she focused on HER anxiety. She expressed to me her anxiety issues in detail. Ummm…correct me if I’m wrong, but did I ask for a play-by-play of her anxiety issues? I thought I was there for me… She went on and on about how she gets anxious when she makes a date with girl friends to go to the movies and she has to leave 45 minutes early to make sure she is there on time. This way she wouldn’t be so anxious and knew she would be on time and relaxed for the movie. REALLY!!! I couldn’t even get out of bed some mornings because my heart rate was at 150, going to the movies was nowhere on my list of things to do. Getting out of bed was first on my list at the time. I couldn’t even make it to my son’s 12^th birthday party and she’s sitting there talking to me about a girl’s night out?!

I won’t bore you with the subsequent office visits, which by the way; she either cancelled or rescheduled most of them. Needless to say, I saw her about six times, and EVERY SINGLE TIME I got to hear about how she handled her girl’s night out to the movies. This lady needed a padded cell, and I was going to this “crazy” for advice?! On a more positive note, she did in fact give me some rather good advice on relaxation tips.

I stopped seeing her after her n’th retelling of the story of her girl’s nights out!

Second Opinion Part II

I usually don’t start taking any new medications until the weekend when Big Handsome is home, just in case something happens. I had become wary of medications as I still had the nagging feeling that the medication (Norvasc) I had originally taken might have started this whole downward spiral. I also don’t like the idea of medications that mess with the brain. I mean, really, I already had heart issues and blood pressure issues; did I really need problems with my brain as well? Remember, I have already said that I was a “pill virgin” my body is not used to taking any ol’ medication.

My son’s 12^th birthday was coming up and we had planned to take him and a friend to an arcade of sorts. He was so excited, looking forward to spending the afternoon with his best buddy (also our next door neighbor) playing all the video games their little hearts desired. Big Handsome suggested I take a pill before going (as stated above I usually don’t take pills until the weekend, this was an exception), that maybe it would make me feel better so I could handle the celebration of my son turning 12. I took the pill.  Big Handsome came home early; we went to pick up my son’s friend. As we approached the school, I began feeling a bit green, ok, a lot green. I just didn’t feel good at all. Big Handsome looked at me and knew something was wrong. He asked how I was feeling and I said “not good at all.” My poor son got that look of concern mixed with total disappointment. Big Handsome said we didn’t have to go to the arcade that we could just go home. I tried to tough it out, really I did. I mean, this was my son’s birthday for crying out loud. I began to feel worse and worse. Big Handsome suggested that he just take me home and that he would take the kids to the arcade and not to worry. Palease! Tell me not to worry that I am going to miss out on one of my gems’ birthdays. UGH! He ended up turning the truck around and taking me home. I was beyond disappointed; I could only imagine what my poor son was feeling. Little did I know that this was the first of many activities that I would miss out on.

Once home I had a mix of emotions. I felt so terribly depressed that I was missing my own son’s birthday and scared at the same time, because I was home alone feeling worse than poop warmed over. I called my sister. While on the phone with her, I told her what was going on (through tears), but then I started to feel weird all over. I can’t even explain it, but I do remember this, among other things; my groin felt very hot (I know, TMI, but that was what I was feeling). I had no idea what was going on. I could only assume it was the medicine.

At any rate, the weekend came and I popped another pill. I won’t lie, I was anxious. I had read the side effects and got even more worried. I remember Big Handsome telling me not to read those things because it just might become a self-fulfilling prophecy, but truth be told; I like to know what to expect. Sunday morning I was to take another pill. I came out to the patio for my morning routine of coffee and such and I started feeling weird. Big Handsome was on a conference call with work at the time. I felt nauseous and generally not well. I went in to use the restroom. As I sat there, I had an overwhelming urge to vomit and started sweating profusely. I remember quite well as I had on sleep pants and a long sleeved shirt (the weather was cool at the time). I also remember calling out to my son “GET YOUR DAD!” who mind you was still on his conference call. When Big Handsome arrived in the bathroom, he found me on the floor, my clothes soaked, even the palms of my hands had droplets of sweat, and I wasn’t moving. I felt like I weighed a ton and there was no way I was getting off that cool, tiled floor. Finally, Big Handsome had to pick me up and put me on the bed. I lay there exhausted. I also distinctly remember telling him that I could feel the blood rushing all around my veins; I was trembling on the inside (if that makes any sense). I told him to hold my hands and asked if he could feel what I was feeling; he of course, said no. I lay there for a while trying to calm down. I later found out that I think what was happening was that I was “flushing”, a feeling I wouldn’t wish on my worst enemy. Needless to say, I didn’t take the subsequent pill. When I was feeling better, I called the doctor (yes, on a Sunday) and he said that flushing was not a normal side effect, but to not take any pills for a few days, and to then start them up again at half a dose.

I ended up doing what the doctor suggested. It didn’t take long (I don’t remember how many days, but it was not many) and I was on the phone to the doctor. I wasn’t feeling any better, in fact, I was feeling worse. When I called the doctor, I spoke to his “helper” who suggested I stop taking the pills. She told me that she was going to speak with the doctor and if they were going to change my medication, she would call me. She never called back. I could only assume that the doctor did not suggest anything else and I would have to wait until my follow-up visit, some four months later.

Four months later, we are now in the spring of 2010, I went in for a follow-up. I expressed to the doctor that I was still having the same symptoms. Since I haven’t told of my symptoms as of yet, I will now. I was still not driving, feeling nauseous all the time, no appetite, tired, fatigued, had trouble sleeping, still had high anxiety, GI issues, losing weight,  tachycardia daily, and had chest pains more often than not. His response: “I don’t know why you are feeling this way, you have a mild case of POTS and it shouldn’t be affecting you this way.” REALLY!!!! This was my life and I wasn’t dealing with it very well, and all he had to say was, “you shouldn’t be feeling this way.” It was then that I shut down and began to cry. He looked at Big Handsome with a “wondering why this weirdo is crying look” and Big Handsome stuck up for me and said, “Look, we’ve been to several doctors and nothing has helped, she’s frustrated and doesn’t want to feel this way anymore.” The doctor then asked (sort of reluctantly, like he was placating me) where in my chest did I have pain and discomfort. I showed him and he told me that it had nothing to do with POTS. SERIOUSLY?!?! Here I was at an electrophysiologist’s office (to my knowledge, this is a specialist that deals in heart related issues) and his response was “that has nothing to do with your heart”? REALLY, whom shall I see if I have chest pains, pray tell!!! And he was a heart doctor for crying out loud, could he have at least suggested why I have chest pains if it has nothing to do with my heart?? Thus, my third (of many) experience with an idiotic doctor. He then told me that there was nothing else he could do for me and suggested I see a doctor closer to home and that it might be a good idea if I saw a psychologist. OMG…how many times have we been told directly or indirectly that “it’s all in our head”? That is what I took away from this doctor; it must all be “in my head”. This, from a doctor that was supposedly a specialist in the field of Dysautonomia. Needless to say, I cried then entire way, yes, the entire one and a half hours home. Once again, I was back at square one…

A Second Opinion

I had been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), a real fancy word for “life as you knew it has now ended, get ready to feel like crap all the time.”

Over the next few months I had been attempting to handle (albeit, not too well) with the effects of having POTS. I had most of the classic symptoms with the exception of fainting (my saving grace). I basically felt as though I had the flu, a hangover and menopause all at the same time. I hadn’t seen any doctors during these months; I was just trying to “deal” with it. I had good and bad days. Actually, I felt as though they were all bad days, it just depended on the degree of “bad”. I got tired of people asking me, “How are you feeling?” What a quandary…I would always think to myself, should I just fake it and say I’m fine or should I sit them down (for a few hours) and tell them exactly how I was feeling? I usually chose the former. My MIL would ask me this daily, it seemed, and finally I told her, “Look, I feel crappy every day of my life; it’s on a scale of ‘just plain crappy’ to ‘really crappy and beyond’.” She then took to asking, “Are you feeling plain crappy or real crappy today?”

I took some of the dx doctor’s advice. I began to use more salt and drink more water, then I discovered Gatorade and began drinking loads of that. Nothing I did made me feel any better. I did speak with the doctor on the phone once and went in to see him for a follow-up. I expressed to him that life as I had known it was gone. I was no longer the active, take my kids everywhere, do whatever I wanted when I wanted person that I had once been. At this point I wasn’t even able to drive. Partly because I think I was scared that I would have an “episode” like my first experience and partly because I was just scared to leave the sanctuary of my home. I was having some really trying anxiety issues. He just told me that he didn’t know what to tell me, that this shouldn’t be affecting my life in the way I had been explaining and that many people that have this disorder lead normal lives (maybe, I should've asked for their phone numbers to see what they were doing). So basically, I was back at square one. I had this funky disorder that not many doctors even knew about much less knew how to treat. I was (what I thought at the time) at my wits end. Of course, I would later find out that I had a looooong way to go before my wits hit their end.

Then my husband spoke with his good friend at work, whose wife was a doctor in the next county up. She was a GP and didn’t know much about POTS, but did have the name of an electrophysiologist  that was, supposedly an expert on the disorder. I was so excited; to think I might have a fighting chance here, to go to a doctor that might actually be able to treat me. I wasted no time in making an appointment, even though his office was an hour and a half away from home.

The day finally came for my appointment. I might finally get some answers and relief. Excitement didn’t even fully explain what I was feeling even though I wasn’t quite looking forward to the hour and a half drive (I wasn’t sure my bladder could handle it). I made sure to have all my previous medical records with me, the ER paperwork, the reports from the dx doctor, my blood work results, the all-important records of my blood pressure readings over the past several months, etc. I entered his office with the confidence and trust of a child.

First he sent in his “helper” you know, the physician’s assistant that comes in to take all your information (of course this is all the information that you just spent 15 minutes writing down on the plethora of forms they give you) because the doctor is too busy to read your chart himself; he just wants the “cliff notes” version, and then has the nerve to come in and ask you to repeat everything you just told his helper. I could already tell that this visit was not going to go the way I had expected. Anywhoo, the doctor came in, seemed nice enough. He said he had looked over my records (surprise, surprise, what he really meant to say was, “I had a brief conference with my helper and she gave me the short of your issue”) and that he concurred with the dx doctor, that I did in fact have POTS. He asked me what my biggest concern was.  I expressed to him what I had told the previous doctor and that at this particular time my biggest issue was not being able to drive and the serious anxiety (or what seemed to be anxiety). He reiterated the need for more salt and water, however never explained why, this I had to learn on my own via the Internet.

Might I digress here for the moment…none of the doctors I had seen had explained a thing to me about this disorder? They didn’t bother to explain the ANS (autonomic nervous system) and how it functions, how blood pressure and heart rate are a big factor with this disorder, how there are many other symptoms that go along with this, and that everyone is different. I had to learn all of this on my own through research on the Internet. At this point I think I should be able to earn a medical degree, or at the very least be grandfathered in.

Back to the second opinion. After concurring with the dx doctor and telling me to eat more salt and drink more water, he decided to put me on Celexa for the anxiety. Celexa is an SSRI drug (don’t ask me to explain; you, like me can easily look it up on the net). I asked him what I might experience; he explained that I shouldn’t feel any different, just better, like my old self. He didn’t go over any of the side effects; however I guessed I could read about them on the little paper thingy that you get from the pharmacy just as easily (after all, I was getting used to finding things out on my own by now). I went home thinking, this is it; my little magic pill to make things all better. I was hopeful; little did I know what was to come.

The Infamous Tilt Table Test

I went in for my Tilt Table Test (aka. TTT) in December of 2009. The whole family (me and my brood, minus the in-laws) went in the early morning hours the day before my birthday to do this test. Amazingly, I was not freaking out. I must tell you, at this point, I was on no medication.

I arrived at the hospital as scheduled. They have to admit you on account that you might have a heart attack right then and there and they might need to revive you…no pressure. I felt a bit antsy, but had I had the monitor then, I don’t think I would’ve pushed the button. I had my Big Handsome next to me and my courageous children…what could go wrong.

I had no idea what to expect. I had done some research on the TTT and I was scared but strangely serene (an answer to my incessant prayer for peace). Quite frankly, I was more afraid that they would strap my arms down; if that had occurred they would’ve had a huge fight on their hands. Fortunately, when they strap you in, your arms are free (Yay! Because I am slightly claustrophobic). So, they strapped me in and explained what would be happening. I would be in a supine (lying down) position and then they would slowly raise the bed until I was standing upright, all the while checking my vitals. The doctor told me not to worry that most people take up to 20 minutes to have any effects.

Well, I proved him wrong. They strapped me in, took my vitals and then the doctor exited the room telling me, “this might take a while”. Upon being put in the standing position, my heart rate went from somewhere in the 70’s to upwards of 150 within three minutes. The doctor wasn’t present, the nurse was. I told her as I felt “it” coming on, “it’s coming, it’s COMING, IT’S COMING!” The doctor came back in and told me that they had to repeat it since he was not present…REALLY?! So they lowered me to the supine position again and started the process all over. Again, the same reaction. Then, the doctor told me they had to repeat it one more time and this time he was going to inject something to hopefully stop the arrhythmia (if in fact I had an arrhythmia, if I didn’t the medicine wouldn’t do anything). They did the test once more, he injected me and all hell broke loose. I told him “IT IS COMING” and he injected me and then I felt as if I couldn’t breathe. I was in tears by now and they lowered me back down where I lay still trying to recuperate. I bit later I was better.

 

Big Handsome and I waited in a room until the doctor came in with his results. He finally came in and explained that I "probably" had POTS. Really???? Probably???? Seriously, if a doctor examines you and says "you probably have a broken wrist", do they not then deduce that an x-ray or some other test will need to be performed to be sure, so as to then be able to ascertain the best course of treatment? If a patient presented with cancer (I am in no way diminishing a dx of cancer, just merely making a point here) Would the doctor come in and say, "You probably have cancer" and leave it at that? I think not. The doctor would most likely want to run a battery of tests, again to figure out the type and best course of treatment. He didn’t really explain what POTS was, instead he handed me some papers he had just printed out from the DINET.org site at the nurse’s desk. He told me that not too many people have this and there are fewer doctors that treat it. He was one of the doctors that didn’t treat it. I even asked if he knew of any doctors that did treat it, that he could refer me to. He told us that he knew of no doctors that treated this illness (three years later I would find out that there is an EP that treats dysautonomia within the same hospital system).  He then told me to, “Eat more salt, drink more water and go live a normal life.” And that was how I got diagnosed. He couldn’t even tell me how much salt or how much water. He told me that he couldn’t put me on the standard  "only" medication used for this illness (Florinef) as it would increase my blood pressure and could lead to other issues ie: hypertension. He said that my blood pressure actually increased upon my tachycardia instead of decreasing to the point of pre-syncope or syncope (near fainting or fainting).

Well, at least it was "probably" a diagnosis. I did feel a bit better at least knowing what might wrong, but to not know how to remedy this illness was disturbing, to say the least. And so began my treacherous journey with POTS.

My Experience with the First Electrophysiologist

So…I went home from the hospital with no real answers, just the electrophysiologist telling me to make an appointment to get a Holter Monitor from his office.

My wonderful husband who shall now be named “Big Handsome” (Why, you ask? Because he is tall, dark and oh, so very handsome) called the electrophysiologist and filled the prescription for the Holter Monitor for 21 days.

He brought the contraption home and I got “hooked up” so to speak. The following days were just a blur of feeling like crap and pushing the button an inordinate amount of times. Every time I felt weird (which back then was about every second) I pushed the button.

Bit of background on the Holter Monitor. You place electrodes on your person in certain areas, they then attach to a cellphone-type doohickey with a button that you put in your pocket. I was instructed that I should push the button whenever I felt something that was not normal. Once the button is pushed, you get a phone call from the company and you need to tell them what you were feeling at the time of the “button push” and what you were doing at the time. The company then records your incident, then all the information, including heart rhythms get sent to the doctor. 

I distinctly remember very shortly after my hospital visit that we, as a family went out to breakfast, complete with in-laws. I walked into the restaurant and sat down and began to look at the menu. Then, I could feel it coming on…the tingling, racing heart, et al. I looked at Big Handsome and said, “It’s happening” to which he said, ok, don’t worry lets go outside to the truck. I sat in the truck and tried to let it pass. Still, I didn’t know what was going on; I just knew that my body was, once again going haywire for no apparent reason. I pushed the button and explained to the company what I was feeling and doing at the time of the push. Then I sat in the truck with the seat reclined and my feet on the dash while the rest of the family enjoyed their breakfast. Afterwards Big Handsome needed something at the local hardware store. I really just wanted to go home and rest as these episodes totally wiped me out, but I figured since we were out we’d go; if I felt bad again, I’d just sit in the truck and wait.  We soldiered on to the hardware store (my breakfast was boxed up and I ate a bit of it in the car) where I pushed the button again (ok, maybe a few times more). We finally got home and I rested.

That was the beginning of my monitoring. Sad start.

Bit of background on the family history. My in-laws (whom I love dearly and get along with famously) were in town to work. While they work, they live in our house. Suffice it to say that they work at the same place as Big Handsome, but they work intermittently. So here I was just out of the hospital for Lord knows what (I still didn’t have answers), but I was told that I should keep my stress levels as low as possible. While my lovely in-laws were staying with us they decided that it would be a wonderful time for their granddaughter (my husband’s niece) and her family, which consists of her husband and toddler to come for a visit. Now don’t get me wrong, I love my husband’s niece and even helped to raise her for a year when she was in grade school, however a visit was not even on my list of things to do at that moment. You see, I was hooked up to electrodes and still trying to figure out if I was going to have a heart attack at any moment. What was I supposed to say…sorry, I don’t want anyone visiting since I don’t know if I’m going to drop dead any second? Suffice to say the niece and family came (I know, I’m weak).

The visit went off without a hitch; however I still resent the lack of compassion towards my health at the time. I felt like it was a slap in the face and the proverbial “buck up” was in the forefront of my mind. Not only did I have to prepare my home for more visitors, but I felt the need to act as if nothing was wrong…hello…I’m strapped to electrodes!!

Anywhoo, I got through the 21 days of monitoring only to follow up with the doctor whose first statement was “Do you realize you pushed the button some 80+ times over the last 21 days?” SERIOUSLY?!?! I was instructed to push the button anytime I felt weird.

He then told me that my heart rhythm was fine and that my heart tended to speed up at times, but he saw no complications. He then told me he wanted to schedule me for a Tilt Table Test.

We scheduled…

My (One and Only) Trip to the ER

After the day my world came crashing down I awoke at 5am the next morning to my husband asking me how I felt and asking if he needed to stay home from work with me. I told him no, I thought I felt ok. I finally awakened for the day at 7am. I felt ok, nothing weird as of yet. I went about my normal routine…cup of coffee on the patio, checking email, having my morning cig. (yes, I still smoke, again please don’t judge). A few minutes into my morning routine, my body started going haywire again. I called my husband and told him, “It’s happening again”, he told me he was leaving work right then and to hang in there he’d be right home (in about 30 minutes). After hanging up with him, I called the cardiologist on her cell, yes, at 7am. I explained my situation, the racing heart rate, the tingling, the rigidity of my facial muscles and feeling like I was about to pass out. I again asked if the medication might be the culprit. She thought that this wasn’t the case and told me that if I felt like I was passing out to have the kids call 911. I told her that my husband was on his way home from work and she told me that if I still felt the same when he got home to head to the ER.

Needless, to say, an hour later, I found myself in the ER. My heart rate was 144. Luckily, they took me right in, relatively speaking (they don’t mess around with the heart). I lay in the ER bed feeling again like I could sleep for a lifetime. They gave me one of those patch things to slow my heart rate down. I lay there for a while dozing in and out wondering what on earth was going on with me. Then the nurse came in to give me a pill, I asked what it was for and she told me it was to lower my heart rate. Then she said she needed to cut it in half; even though the doctor had prescribed the whole pill, she took it upon herself to give me just half as “she has seen what a whole pill can do to a person”. At first, I had no idea what she was talking about and I was so out of it, I didn’t know up from down. Later I would find out that had she given me the whole pill, I probably wouldn’t be here writing this blog. My heart rate went down to 30 (on half the pill, imagine what a whole one would have done!) The alarm kept going off and when I finally awoke from my foggy state I asked the nurse, if a heart rate of 30 was normal, because it seemed low to me; she expressed that yes, 30 was low. That’s when they took off that patch (nitro-something). I will always hold nurses in the highest regard, especially the one that potentially saved my life.

A bit later they said that they were admitting me into the hospital for observation. Meanwhile, my husband was at home with the kids getting them situated with some friends as we have no family around where we live. Actually, now that I think about it, my in-laws were in town, but they were working (that’s another story). They came by the ER after work to visit and to pray with me. I couldn’t help the nagging feeling though that they were looking at me like I was some kind of weirdo and thinking that I should just “buck up”. Don’t ask me why I felt this way; I was really out of it at the time. After they left I was alone in a hospital not knowing what was happening to me. This was possibly the loneliest moment of my life. The hospital set me up in a room complete with beeping monitors hours after I had entered the ER. Still they had no idea what was going on. My husband came back with some essentials only to get back home to deal with the kids and the animals.

Later in the evening, an electrophysiologist came into my room to explain some things to me. Don’t even ask me to remember all he said as most days I can’t remember what I had for breakfast. In fact, it’s amazing all the things I do remember about this horrible ordeal. At any rate, I remember him saying that I didn’t have high blood pressure or high cholesterol and I should stop taking the medication that the cardiologist had put me on immediately. He didn’t have to tell me twice! I also remember him telling me to set up an appointment at his office to get a Holter Monitor. He wanted to monitor my heart for 21 days and then we’d go from there. He asked me if I had ever fainted and I told him, one time when I was a teenager.

The next morning the attending ER doctor came in to discharge me, again telling me that from my blood work and various tests that I, in fact, did not have high blood pressure nor did I have high cholesterol and to stop taking the medication that I had been prescribed. I guess I was told twice!! He then looked up the medication on his hand-held doohickey and showed me some side effects of the medication I was on; both meds could cause tachycardia and arrhythmias.

Hmmmm…

By the way, the original cardiologist never showed up at the hospital. Don’t know why, she knew I was there as I gave her name and number to the ER nurse. Her practice is in a different county although the hospitals in her county are owned by the same hospitals in our county. Go figure. I never saw her again although I did speak to her on the phone once after my ER visit.

To this day, my husband and I wonder if the medication that the cardiologist put me on (Norvasc 10mg) might have brought my blood pressure down too low thus, initiating the tachycardia. We may never know. There is also the question of why my heart rate was going up for no apparent reason before I even saw the cardiologist.

Questions, questions, and more questions…sadly not as many answers.

 

The Day My World Came Crashing Down

I had been taking my medication (Norvasc and Niacin) and checking my bp day and night without incidence for about a week. Life was good, very good until it began to crumble.

My kids, a friend of my daughter, and I had a field trip scheduled to visit a museum in the next town up, about one and a half hours away. The kids were so excited as this would be their last opportunity to go to this particular museum because it was only for children up to the age of thirteen. As I mentioned this place was in the next town, a town that I have driven to many times in the past. I haven’t mentioned before that I am a bit anxious when it comes to driving far from home, not spastic mind you, just a bit on edge. I usually car pool with friends to take the edge off; that morning my car pooling friend called at the last minute to tell me that she would have to meet me there, that her plans had changed and she was taking more kids than she had originally planned. I felt a pang of panic, but figured I’ve done this many times and I’d be fine. So, the kids and I set off to enjoy our last trip to this museum.

About ten minutes into the trip; we were about to get on the highway, I began to feel weird. I started to feel nauseous and tingly. I looked at my daughter in the rear view and told her, “I don’t feel very well.” She responded with “Mom, just take a deep breath, I know how you get about driving and we’ve done this before, you’ll be fine.” My daughter, my best pal! I said to myself, ok, you can do this. We continued on our journey. About twenty minutes into the trip, I was still nauseous, tingly and now my leg was shaking uncontrollably and my heart felt like it was going to jump out of my chest. I was sweating and dizzy and I could literally feel the tingly sensation creeping up my arms, legs, back and even up my neck toward my head. I was beginning to freak out a bit (ok, more than just a bit). I quickly began to turn the car around (not in the middle of the highway, mind you; I found an exit fast). I told the kids that mommy wasn’t feeling well at all, that I didn’t know what was going on and that we wouldn’t be able to go to the museum. They were worried about me, and crushed at the same time because they would be missing out on the last opportunity to visit a museum that they loved so much. I just kept telling myself, drive…just get home before you hurl or pass out, or both.

We arrived home safely albeit with some very disappointed kids. I told them to just let me lie down for a while. I thought maybe I didn’t eat enough that morning because we were in an excited rush to get going. I downed a granola bar and went to lie down. As I was laying there in bed trying my best to relax, I thought; I need to make this up to the kids somehow. I got my computer and looked up the nearest movie. I apologized for not being able to go to the museum and tried to placate them with a visit to the movie theater instead. We piled into the SUV once more and headed to the movies.

About ten minutes into the trip, the same feelings came back. I didn’t know what was happening to me. I told myself, just get to the movie theater and everything will be fine. Well, it wasn’t. By the time I got to the movies, I was shaking all over, ready to hurl and I was scared. Nothing, and I mean nothing had ever happened to me like this before. I called my husband at work, which was about 40 minutes from the theater. I explained what was going on (by this time my facial muscles were getting rigid and I was having a hard time talking), my husband said he was leaving work immediately to come get us. Later, I would find out that he sped the whole way to the theater trying to drive through tears of worry. Meanwhile, we made it into the movie theater, the kids were getting their popcorn and drinks and I was lying on a bench with my legs propped up against a movie poster advertising the latest movie release. Believe me I was a sight, not that all the people starring was a tip off or anything. My daughter’s friend called her mom as well and told me that she was on the way too.

At this point I could feel the beginnings of fainting, you know when things start to close in on you and get black? I looked to my ds, eleven at the time and asked him to go over to the nice lady at the desk and have her call 911. Can you imagine!!! I had to ask one of my dear gems to call 911 because at that moment I thought I was literally going to die right in front of them. I have never been so frightened in my life. I kept praying “Please, God, please do not let me die in front of my children.” I can only imagine what my children were feeling at the time; my dd was on the phone relaying between my husband and me minute by minute updates until he arrived.

The EMT’s got to the theater, checked me out only to deduce that I was having what they called an anxiety attack. My heart was racing and my bp was elevated and I was hyperventilating. They had me do various things to get my heart to beat normally and told me that I needed to see a doctor about anxiety and possibly be put on medication for it. They of course asked me if I had ever experienced anything like this in my life, and my response was…NEVER.

My husband finally, after what seemed like a lifetime, arrived at the theater. My dd's girlfriend’s mother had come as well and took the girls home with her. We left my car at the theater and my husband drove us home. On the ride home, I called the cardiologist on her cell. I relayed to her what was happening and asked if the medication she had put me on could be the culprit. She said that she didn’t think so, but to schedule an appointment with her. After hanging up with her I could only describe the way I was feeling as “hitting the wall” you know, when runners are running in a marathon and they just kind of collapse from exhaustion (there is a technical reason for this, but I can't remember it right now)? I felt like I weighed a ton and that I could sleep for days. My body had been working so hard I felt like a limp rag. I fell asleep in the car on the way home.

When I got home at about 2:30pm, I crawled into bed and slept until the next morning hoping, dreaming that this was all just a flukish kind of nightmare that I was going to wake up from feeling fine. Unfortunately, it was more like a nightmare that was just at the beginning stages.

 

 

My Story (Part III, let’s face it, this is going to go on and on and on)

In the fall of 2009 I went to see the Cardiologist. She was very nice and seemed so interested; she spent an hour and a half with me. We talked about what I was experiencing and she went over my blood test results and took my bp. She said my bp was elevated. I explained about the GYN appointment and subsequent bp readings and she determined that I had high blood pressure. Also from my blood work, she determined that my cholesterol was high (I’ve always been kinda borderline). Her first recommendation was that I quit smoking (yes, I smoke, please don’t judge), however since she figured I wasn’t going to up and quit my nasty habit overnight, she would prescribe some medication (Norvasc 10mg.) for my hypertension and explained that once I quit smoking I could probably be taken off the meds. She also prescribed Niacin for my high cholesterol and suggested that I purchase a blood pressure monitor to check my bp in the morning and at night and to keep track of it.

I had never had any serious medical issues before this. I had never needed to take medication for anything except the occasional antibiotic. I called myself a “pill virgin” because I rarely took anything but Ibuprofen once in a while. The cardiologist also suggested that I come to her main office (her office was in the next county down) to take a Treadmill Stress Test. I scheduled the stress test for that weekend. At the time I didn’t question this doctor one bit. She was so nice and kind and really listened to me (something I rarely experienced with doctors in the past), she even gave me her cell phone number, just in case I needed to get in touch with her.

That weekend, I went for the Stress Test. I passed with flying colors; I didn’t even break a sweat. She said that my heart was in very good condition except that I had a bit of muscle thickening, but she figured that my hypertension was the cause. At this point I hadn’t begun taking the medication she had prescribed, but was to start that week.

I began taking the medication without incidence. I was on it for a week, then my world came crashing down.

 

My Story (Part Deux of Goodness Knows How Many)

So last time I went over not my first, and certainly not my last dealings with idiotic doctors. Don’t get me wrong, I do (sort of) have some semblance of respect for doctors and all the time they spend in medical school. I have no doubt that they have more knowledge than me in things medical however, there is no one, and I repeat, NO ONE that has more knowledge about me whether it be physically, mentally, emotionally or spiritually than me (well, except God).

 

Fast forward to Summer of 2009. We took our yearly fishing vacation. It was and still is our yearly fishing marathon. When I say marathon, I mean marathon. We own a fishing boat and my husband absolutely loves to fish. Our family goes south complete with all our gear and boat trailing behind us; stress dripping away as the miles go by. We look forward to this trip all year. Personally, I love to just hang out on the boat with the family, and quite frankly all I catch is a tan. We’ve been going on this trip for ten years now. BIGS (Before I Got Sick) my husband would wake us up early (really a rather reasonable hour) with breakfast made to inhale so we could get out on the bay and fish. We have and continue to have such fond memories of these trips. We would go out in the somewhat early morning hours and fish until the sun went down. Oh, did I mention that before the rest of the family got up, my terrific hubby would have loaded the boat with bait, all essential equipment, and packed the lunch complete with plenty of beer (for the adults only). All we had to do was roll out of bed, scarf down a delicious breakfast and make for the boat, which was docked right outside our door. We’d all climb aboard, sleep still in our eyes, but more than willing to spend the day out on the water, hopefully catching fish, and a lobster or two, or twenty if we were lucky.

 

That particular year, I felt yucky. Couldn’t really put my finger on it, but yucky none the less. I tried my hardest to put my best foot, or fin forward. We ended up having a wonderful vacation as usual, but I still didn’t feel quite “right”. This I kept to myself.

 

Upon returning home, I felt the need to see another doctor. I figured that five months was a sufficient amount of time to calm down from my last doctor visit. I was experiencing an increase in my heart rate while doing things that weren’t considered exhausting; such as making the bed, letting the dogs out for their morning duties, etc. Still I kept this to myself. I didn’t really have any other symptoms, just the racing heart and sometimes I was out of breath.

 

During this time I was quite active, for me, that is. A few months prior I had started a “diet” so to speak. I had wanted to lose a bit of weight, but mainly, I just wanted to be healthier. I also began an exercise routine. In the past my exercise routines had been rather sparse; I’ve never been one to consistently exercise (before my children were born I used to run five miles a day, which quickly ended when they came into the world). In fact, I have, on occasion claimed that I am allergic to exercise. However, I wasn’t getting any younger and the pounds were slowly adding up, so I figured, why not. I began to ride my bike nine or so miles a day, about five to six times a week. I actually felt pretty good and looked forward to my ride daily. While on this “diet” I was taught about target heart rate, the rate you want your heart to be at so as to burn calories efficiently. My target heart rate was 120. Thus, my concern when my heart rate was 120+ while making the bed.

 

I went to a local nurse practitioner. I ended up seeing a nurse whom I had known from previous homeschooling years. She did an EKG on me and examined me. The EKG came back normal, however she said it wasn’t normal for my heart to race like I had explained. She referred me to a Cardiologist that came to the offices once a week. This was in the fall of 2009.

 

Let me backtrack just a bit. Earlier in the summer, I had gone to my regular GYN appointment. I absolutely abhor going, not because of the exam (although you’d think that that would be enough), but because the office was so far away and the wait time was always forever and the office staff…well, let’s just say they need some training. I really like my doctor though, but I would always be angry even before I set out to see him. When I got to the doctor, he told me that my blood pressure was a bit high. He said that it was no big deal as I didn’t have a history of it, but to just watch it; if I was near a drugstore that had a bp machine, pop in and just give it a test. I did this a few times and my bp was elevated each time. I suppose looking back I could say that I was stressed at the time, but it was all good stress. All except that my children were on vacation for three weeks with the grandparents and I was missing them and constantly worried about them.

 

Anywhoo, back to the nurse. I made the appointment to see the cardiologist.

My Story (Part I of Goodness Knows How Many)

I’ll start at the beginning…I was born on, just kidding; I’ll cut right to the chase. It all started back in the Spring of 2009. I rarely went to the doctor. Usually, I would only go if I was bleeding out my eyes or had an infection that I knew I needed an antibiotic for. I’ve never really trusted doctors in the past, I mean, let’s face it…that’s why they call it “practicing” medicine. Who wants to be a guinea pig, not me? Many times I would save up concerns and go in with a list maybe once a year.

 

So…back to 2009. I went to a regular GP because I had my list of concerns and it was about time I did something about them. On my list was a sunspot on my back that had grown from the size of a quarter to about the size of, well, my whole upper back. Next on the list was a skin lesion that had me worried because I had had MRSA (Methicillin-resistant Staphylococcus aureus) and I wanted to make sure that it wasn’t rearing its painful, ugly head again. Number three was migraines. I had been having headaches for some time and had gone to different doctors in the past with no real conclusions. Lastly, I had been having this weird pain on the left side of my chest and at times my left arm would feel tingly and cold on the inside. I realized that none of these issues were life threatening, however I still felt the need to see a doctor. Mostly I went to see if I could get some relief and some answers from a person with a new perspective (I had only seen this doctor once before for a sinus infection).

 

I began with the first item on my list, my ever-growing sunspot. The doctor’s response was “this is common because of where we live, wash it with Selsun Blue and it should go away.” Little background on the sunspot and Selsun Blue… My husband had had one of these sunspots and his doctor (not the same one) had told him to spread Selsun Blue on the spot, let it set for a bit and wash it off. It got rid of the spot on my husband, so I figured I would try this remedy first. Well, the Selsun Blue burned my skin and when I went to the Dermatologist (the one that dx me with MRSA years back), she said I had to come back in two weeks so that my skin had time to heal from the burn. She then tested the sunspot and prescribed some cream. Might I ask, how is one to put cream on a sunspot in the middle of the back two times a day??? My hubby had to wake me at 5am, before he left for work to put it on every morning. Needless to say, the cream did nothing. Back to the GP. I told him that I had tried the Selsun Blue and it burned me, and was there something else I could do? He told me that couldn’t have happened, "Selsun Blue doesn’t burn skin." And so continued my lack of trust in doctors (and this was just the tip of the iceberg).

 

I went on to my next issue. I explained about my heart feeling funny and my arm tingling and feeling cold on the inside. He actually felt my arm and said, “It doesn’t feel cold to me.” To which inside my head I asked, “What part of inside do you NOT understand?” Then, his next brilliant assessment was “You’re too young to have heart problems, next….” I could already see what many years in medical school had done for this man, apparently nothing.

 

I soldiered on. I explained to him about the lesion on my leg and how I had been diagnosed with MRSA some years back. Since it had taken a few weeks to get an appointment with this doctor, my lesion had already started to heal. He asked if he could take a look at it and told me there was nothing he could do with that because it had already started to heal. Then, he asked me, “So when was it that you supposedly had MRSA?” Ok, so now he had basically called me a liar for the second time, REALLY?!?! I was getting more and more frustrated by the minute and beginning to wonder why I was really there. This guy had successfully disregarded every concern I had brought up. Seriously, I thought they taught a class in med school about bed side manner. Obviously, this guy skipped class that day.

 

I thought to myself, ok, he hasn’t helped me a bit, should I even mention the headaches? I figured since I had wasted all this time, why not take the plunge? I explained about the headaches and how I had seen various doctors over the years to no avail. I suggested that it might be my sinuses. His response, “You and 75% of all the people that live here have sinus problems.”

 

So let’s recap, shall we? I finally went to the doctor and he literally discounted all of my concerns and didn’t even have the decency to be nice about it.  In fact, I distinctly remember this person (at this point I’m not even willing to call him a doctor, ogre maybe, but not doctor) telling me “What do you expect, you’ve been to other doctors and done what they’ve told you, what makes you think I would tell you anything different?” At this point I was so frustrated, I was in tears. Then, he had the nerve to ask me, “Why are you crying?” To which I responded, slightly yelling, “I came here with concerns that you took no care of, I’m crying because I thought by coming to you, I could get a fresh perspective on these issues I have been dealing with for years, I’m crying because I am frustrated!” He then looked at me like I was mental, jotted something in his notes (probably a referral to the nearest mental ward) and called the nurse in to take some blood. I never went back to find out the results…that was almost four years ago and just the beginning of my illness.

 

Needless to say, after the appointment I sat in my vehicle crying into the phone while telling my husband of my horrible experience.

 

 

Had to add this clip about going to the doctor. I can so relate...

Sometimes you just have to find the funny in situations, or you might just go crazy.