Pity Party Anyone?

Well, my GP appointment was a bust. I took in my binder with all my info, test results, articles, symptoms...you name it. The doctor wasn't all that interested. Don't get me wrong, she was a nice lady, but had a very limited knowledge of POTS. I didn't see my normal GP. I don't know why their idiotic staff has such a problem understanding me when I call to make an appointment with Dr. B. You'd think when one calls the office and says, “I'd like to make an appointment with Dr. B”, they would actually make an appointment for you with that particular dr., but no, not the case. OMG, I can't tell you how frustrated I am.

Stick a fork in me, cuz I'm  freakin' DONE!!

 

I went in to get my Xanax refilled, which she did, but then I told her I had some questions about my POTS and recent symptoms. I expressed to her that I don't have many of the "tell-tail" symptoms of POTS other than tachycardia (which by the way, is certainly not my biggest concern). I told her of my suspicions that there might be something else going on, like autoimmune issues and could I be tested for that. She looked at me and told me I didn't have autoimmune issues. I asked her how she knows if I've never been tested for anything. She briefly looked at my last few years of labs (which are all routine labs mind you) and said that something would've shown up on those. She advised me to keep hydrated and cool and reduce my stress. REALLY!? So I told her that I guess I am just destined to live my life feeling crappy every day. She didn't have a response to that. I gave her my neatly typed word document table consisting of all my symptoms, delineated by frequency. She glanced over it and gave it back with no response. When I informed her that I wanted to know what type of POTS I have, that maybe there is a different treatment if only we knew what we were dealing with. She said since I have tachycardia and all other heart tests were normal, it's safe to assume I have POTS. I felt like saying, “No shit Sherlock, my question is what type? She would have none of it. She told me we'd look at my blood work results during the next visit (in 6 months) and go from there. Apparently she missed the part where I've been dealing with this for four years now.

My husband was with me and I was near tears, but held them back. To my surprise, after the visit, instead of saying,  I told you so, you'll just have to live with it, he told me that the next step is to ask our daughter's cardio for a referral to a cardio or EP that specializes in POTS/Dysautonomia (since she recognized it in my daughter by just reading her symptoms).

I feel so done with it all at this point, I don't even know if I want to even consider seeing anyone else. I feel like I will just have to go on pretending that life is just freaking dandy and if I ignore it long enough, it might just go away.

So much for my time and effort in compiling my notebook...

I'm so disgusted, discouraged, disheartened and any other dis word I can think of.

Sorry for the rant, just wanted to get it off my chest. It's beer-thirty here, as far as I'm concerned, and I'm going to have a few and wallow in my self-pity for the rest of the day.

Top Ten Tuesdays

I know this will be a boring Top Ten Tuesday this week, sorry. As usual, I wasn’t prepared, and since the holiday weekend, my days are all messed up. So here goes my boring Top Ten for this week in no particular order:

Top Ten Symptoms I deal with on a Daily Basis

1. Tachycardia

2. Palpitations

3. Tinnitus

4. Visual issues

5. Chest pain/discomfort

6. Sleep problems

7. Little to no appetite

8. Night sweats

9. Anxiety

10. The ever-popular brain fog

There are many more symptoms I could list, but this is a Top Ten list, plus I don’t want to bore anyone more than need be. I am thankful though that fainting is not on the list.

To Pursue or not to Pursue...

To Pursue or not to Pursue…

That is the question. I was diagnosed with Postural Orthostatic Tachycardia Syndrome in 2009 following an ER/hospital visit. “Visit” isn’t quite the right word. To use the term “visit” implies that one has a choice in the matter, like, “I’d like to visit the sulfur cliffs in Pamukkale, Turkey". I’ve never known of a person wanting to visit the ER/hospital for their own health reasons. So, I guess I should really say, I was diagnosed following a totally reluctant, dragged kicking and screaming (really I was just driven by Big Handsome as I lay lifeless in the front seat, but if I’d had the energy and wasn’t so worried I was going to die on the spot, I would’ve definitely gone kicking and screaming) ER/hospital stay.  Actually, I was diagnosed after having a Tilt Table Test with “probably POTS”. This begs the question, do I really have POTS or is it just probably?

I’ve been to Cardiologists, Electrophysiologists, GP’s, a Neurologist and even a Psychologist. They’ve all just taken the original diagnosis, concurred, and other than my current GP have given no efforts to treat me. It’s always in the back of my mind that something else might be wrong. I am a firm believer in “everything happens for a reason.” Not in the spiritual sense mind you (although I do believe in that as well, just not for this instance), but in the sense that there must be a reason for this illness. I feel like once that reason is discovered, maybe, just maybe I could get better treatment and attempt to get my life back.

One thing I haven’t done is travel to the few specialists around the country. I’m still on the fence about this. I feel like, why travel for them to tell me what the others have told me, “There’s nothing we can do, eat more salt, drink more water and go live a normal life”? My life over the last four years has been anything but normal. I know it sounds silly, but I can’t just pick up and fly around the country for appointments. For one thing, Big Handsome would have to take time off work. Not that he’s not willing to do that, but how much time? He’s my American Express card so to speak; I never leave home without him. We don’t have family near us that can help out with the kids either, which means that we’d have to drag them along with us. I know you are probably wondering why I complain about all these things and never seem to attempt to find the answers no matter how inconvenient it might be. This is a question I ask myself frequently. I guess I just feel like since I haven’t really had the best of experiences with doctors, why go through all the trouble of traveling, money spent, time spent if all they might do is tell me what all the other doctors have told me? Yes, I do realize that they just might have new information or insight, but I guess I’m just not willing to take the gamble.

I used to be an active, stay at home, homeschooling mom. I am still the latter, just not the former. I feel like I live my life pretending everything is okay. Why can’t people just understand that I feel like crap every single day of my life; it’s just the degree of crappiness that waxes and wanes.

So, I’m contemplating beginning at the beginning. Yes, starting over, but I just don’t know. I don’t know if I can take the emotional and mental stress of it all.

On the flip-side of the coin, (you’ll soon see that my coin has many sides) do I just continue to ignore the fact that I probably have a chronic illness??? Do I continue to wear more masks than all shows performed on Broadway combined? Do I just look in the mirror and repeat some mantra of some sort? As the title of my blog states, I am never hopeless, but that doesn’t necessarily mean that I don’t have really crappy days where I just don’t want to pretend anymore.

Place I'd like to visit willingly

 

Place no one ever wants to visit willingly



Top Ten Tuesdays

As you can read, my second job is making phone calls. I spend an inordinate amount of time on the phone. It would be totally great if I spent this time reminiscing about the good ol’ days with a friend, but no, they are phone calls to complete strangers, and it always seems as though I am trying to fix something that someone else screwed up.

I swear, sometimes I feel like I’m surrounded by idiots! And, no, I’m not in a room full of mirrors J

Top Ten Phone Calls I Have to Make (some are repeats for sure):

1. Call my daughter’s Cardiologist’s office to find out results of 24 hour Holter monitor and the outcome of the doctor’s conference with 25+ other cardiologist’s/specialists at the Children’s Hospital regarding my daughter’s case. Never mind that I received this message to call the office when we returned home from a week-long vacation, which we informed the doctor and her nurse of, AND gave my husband’s cell number to call (specifically telling them to call that number) because we would not be home. Again, room full of idiots…I can only suspect/hope that it was nothing serious otherwise (a normal person) would’ve checked the numerous papers we filled out while in-office for the several other phone numbers that we could be reached at.

2. Call pediatrician’s office to have them credit my $50 they charged me as “After Hours Visit” even though there is nothing in writing that states there is an extra charge for anything, let alone a Saturday appointment. This one’s been going on for weeks…

3. Call homeowner’s insurance company to find out if my mortgage company paid the insurance payment, if not, we currently have no homeowner’s and hurricane season is right around the corner. Not good, not good at all.

4. Call my GP to schedule an appointment to get my medication renewed. No, no one (except the pharmacist) told me that this particular medication has to be renewed every six months, not to mention that the doctor ought to know this. Really great when I’m running out of medication and going on vacation thinking (rather stupidly I guess) that I could just call the pharmacist to renew only to have them tell me they can’t renew it and that I need a new script from my doctor. Of course I call the dreaded doctor’s office to see if he will call in my prescription to which the office girl responds with her ever-favorite statement, “Sorry, he can’t do that, you’ll have to make an appointment.” UGH!! No time for an appointment as I was leaving on vacation that same week and had other appointments with various doctors for my daughter…UGH, I so want off this ride! Needless to say, I am grateful that they renewed the script for a month to give me time to schedule an appointment. Although still rather peeved that no one can seem to get their shit straight. Even though I call anyone/everyone that is involved to make sure I have all my i’s dotted and my t’s crossed, I have realized (many moons ago) that nothing, NOTHING is ever easy.

5. Make appointment with lab for Big Handsome and my bloodwork. YAY…

6. Call Big Handsome’s eye doctor to make an appointment because the contact company won’t renew his prescription until he sees the doctor (he’s been seeing the same doctor for 30+ years). Never mind that we were all just in rather recently for an eye exam and no one bothered to check my husband’s eyes for contact purposes. Really??? He’s been wearing them for 30+ years. Oh yeah, I called the eye doctor’s office a few weeks ago to ask them to fax over Big Handsome’s contact prescription and they told me he has to come in for an appointment. Story of my freakin’ life!! Why can’t anyone get their crap together and do all the necessary stuff while we are in the office??? It’s just so damn confounding.

7. Call Big Handsome’s dentist to confirm his appointment. Just hoping that it doesn’t conflict with all the other appointments we have and/or have to make.

8. Call medical insurance company for a bill we received for my son’s annual blood work. We shouldn’t receive a bill because all the blood work was routine as per his “free” annual physical. Now I have to call the insurance so that they can call the doctor’s billing department to explain to them how to code things properly.

9. Make my list of phone calls for next week as I’ll probably have to call all the above people yet again to make sure they are doing what they need to do. Will this ever end!?!?

10. Possibly call Big Handsome to tell him to come home from work early because I very well might be having a nervous breakdown.

Hasta La Vista!

I’ll be off the grid for about a week or so. Big Handsome is taking us for a much needed beach week vacation. Saying “We can’t wait!” is quite the understatement.

Have to share a funny with you all (well funny to me anyway).

I am an admitted germaphobe; admitting it is the first step to recovery, right? My kids know I’m a germaphobe and love to push my buttons. Like the time my daughter was in a McDonald’s with a friend and sent me a picture of herself standing in line barefoot!!! In McDonald's! At least she wasn’t in the bathroom of said McDonald's! They do this kind of stuff to me regularly. Yes, I buy gallons of hand sanitizer, always have it in the kitchen and bathrooms as well as keeping a mini bottle in my purse at all times.

We had to take our daughter for her regular cardio visit the other day (story behind that will have to be saved for another post when we have more information). We are sitting in the exam room waiting for her to go in for her sonogram and I look up to see her holding a strand of hair in her fingers,  stretched out between her two hands, the piece of hair was over a foot long. She looks at me and says nonchalantly, “Gee, I had no idea I had black hair.” My head shoots up to look at her, my eyes must’ve been as big as sauces as I half screamed at her, “AND YOUR STILL HOLDING IT!” I must’ve looked like I was going to hurl. She was laughing so hard, she was crying and almost fell off the exam table. Of course the hair was her own. She just loves getting a rise out of me. Geez, kids these days! Meanwhile, Big Handsome is in the corner snickering away. UGH! Good thing I doubled up on my meds that afternoon.

What do we have though, if we don’t have kids that keep us on our toes at all times?

I am choosing to begin my vacation today, even though we still don’t leave for a few days. I’m so looking forward to sunsets on the beach with Big Handsome, and paddle boarding with the kids. I can’t wait to leave behind this sickness and stress. I’m not taking any medical journal articles, no papers to grade, no transcripts to fill in, no Art Appreciation lesson plans…no work whatsoever. I’m going to relax and enjoy my family. After all, the problems I leave behind will be waiting for me when I get back.

Hasta la vista baby!!

Top Ten Tuesdays

It seems as though I spend most of my time on the phone, which would be great if I’m catching up with a friend. Unfortunately, most of my calls have to do with doctor’s offices, pharmacies, and insurance companies. So, here goes, my Top Ten List for today in no particular order:

Top Ten Phone Calls I Have to Make Today

1. I thought I’d start off with something positive J I need to call my husband’s aunt. We are going away (YAY!) for a beach week and we are going to stop in on the way for a short visit with the aunt and uncle. Love them to pieces and can’t wait to see them.

2. Call doctor’s office to see if they will renew my prescription before I go out of town. I know, you’re probably thinking, gee, why didn’t you call way ahead of time? Well, I would’ve called if I’d known that the pharmacy can only renew this particular medicine every six months. They told me that the dr. should’ve known and told me that I need a new prescription every six months. He usually gives me a script for the year. UGH!! This office is notorious for not doing things in a timely manner and I don’t know what I’ll do without this medication.

3. Call pediatrician’s office and get my $50 back for a Saturday appointment that they charged me for as an “After Hours Visit” without telling me that there would be an extra charge. All I went in for was to get a prescription renewal. This will be my third attempt at getting some answers.

4. Call lab to make an appointment for blood work.

5. Call medical insurance company just because I call so often, I’ve now made friends with some of the gals, so I want to see how their doing. NOT!! I’ve got a few questions, as usual.

6. Call mortgage company to see if they’ve paid for my homeowner’s insurance yet. The original company went belly up and transferred my information to the new company, but somehow failed to let them in on my escrow information. Seriously, how is that possible?? Oh, and they sent us a letter in the mail saying they needed this information or my insurance would be terminated. Only problem with that is that they gave me one whole day to figure out what is going on. UGH!

7. Call doctor’s office again to make sure they called in my prescription.

8. Call doctor’s office again to make sure they called in my prescription.

9. Call doctor’s office again to make sure they called in my prescription.

10. Call Big Handsome to tell him how much I love him, thank him for attempting to keep me sane and let him know how much I look forward to a relaxing beach week with the family.

Update on Physicals

So Big Handsome and I went in this past week for our Free Yearly Physicals.

Our appointment was at 3:30pm. I called the office at 3pm to see if they were running on time. Of course the receptionist’s response was, “Yes.” We set out for our appointment.

Mind you, the last time I was there, they requested I pay $100 even though I told them that my deductible was met. They informed me that it wasn’t met, so I ended up paying the $100. A week later, I get my EOB in the mail that says “You owe: $13.78, proving that I had in fact paid my deductible already. I took the paper in and the receipt of my $100 payment and explained the situation to the receptionist. She took it to someone else then came back and told/asked me, “Yes, we owe you $88 (and some change), would you like me to put this toward today’s visit?” I was trying so hard to put on a smile and be nice. I so wanted to say to her, “What part of Free Yearly Physical do you NOT understand?” But, I refrained as usual. I simply told her no, we are here for our Free Yearly Physical (again, because she had already asked why we were there when I signed in) and asked her to credit my account because I would be making another appt. to come in at a later time.

We waited an hour in the waiting room, and then were called in only to wait another 30 minutes in the exam room before the doctor came in. I’m SO glad I called ahead of time to find out if they were running on time!! Seriously, pray tell, what is so damn hard about being on time?! I am on time, EVERY TIME! What part of “Are you running on time?”, do they NOT understand? Running on time to me means that when I make an appointment for 3:30pm, I, in fact ought to be called in a 3:30 pm. It really doesn’t seem all that difficult to me. I just don’t get it. I mean, yes, I understand that the dr. might be running late (I do appreciate the time they spend with me and Big Handsome), but don’t LIE to me and tell me the doctor is running on time when it is all too common for him not to be running on time. Just give me the courtesy of honesty for crying out loud!

Let’s just do some simple math, shall we? The office has about 6 exam rooms. There are three people (two doctors and a PA) to take care of patients. I would think that a normal person could do some simple math and figure out that 3 patients can be seen at one time. If the doctor spends approximately 30 minutes with each patient and we are looking at a 9am-5pm schedule, one doctor can see 2 patients an hour. Multiply that by 3 doctors/PA’s and you get 6 patients an hour.  Multiply that by an 8 hour day and the maximum is 48 patients a day. It would be fun to call and see how many patients they see in a day, I would hazard to guess that it is more than 48. I only say this because I’ve asked patients before what their appointment time was and have been told by many, the same appointment time as me. What they seem to do is to schedule multiple people at the same time to fill all 6 exam rooms and they seem to schedule appointments in 15 minute increments (even though they know that the doctor will spend at least 20-30 minutes with you). Again, just by doing some simple math, they are probably scheduling at least 96 patients per day. No wonder they are running behind all the time and that’s provided one of the doctors doesn’t get called for an emergency.

Anywho, long story short (well, kinda), we were in and out in two hours. No complaints about that. I will complain however about how they refused to take our blood in office (which didn’t really make a difference because I knew they would refuse and we hadn’t fasted besides, but as you all know, I love to complain and argue!) They blamed it on the insurance, I told them I had just spoken with the insurance and they had said that our blood could be drawn in office; they insisted my insurance wouldn’t allow it. I did call the insurance the next day and they assured me that my blood could be drawn in office. UGH! I asked for something in writing so I could shove it in their face next time, but unfortunately the insurance company said no, they have no such paper.

Again, people want to know why I hate doctor’s offices, dealing with appointments, lab work and insurance. It’s enough to drive a sane person crazy, and in my case, a crazy person, crazier!!

Big Handsome would never do this, ok, maybe he would. Funny thing though is when the nurse asked him if he was experiencing any pain, I piped up with “Yes, me, does that count?!”