Top Ten Tuesdays

Ok, seems like a “Negative Nelly” kinda day, perhaps a “Complaining Carla", if you will. I’ve spent the last few days calling doctors’ offices in an attempt to explain to them how to do their jobs. Apparently, they skimmed over that part of their contract/employment application. So, here goes in no particular order…

Top Ten annoyances when dealing with Doctors’ offices/appointments:

1. Calling to make an appointment with the doctor and having the receptionist say…”The next appointment we have is October 2026.” Ok, maybe it’s not that bad, but having to wait for an appointment just adds to my already over-the-top anxiety. I’m the same as any other completely selfish, narcissistic person; I want my appointment now, possibly yesterday!

2. When I finally make it into my appointment (and yes, I am ALWAYS on time) to have them tell me that I need to pay $100 (in cash mind you, they don’t take checks or credit cards and don’t bother telling you this ahead of time, as if people just walk around with $100 cash in their wallet) even though my deductible has been met, they just haven’t done their job in finding this information out prior to my appointment, and of course don’t believe me when I tell them it’s already been met. In which case they always end up owing us money! P.S. Unfortunately, I’m not very assertive. I know, I’m working on this, but it is slow going.

3. As stated above, I’m ALWAYS on time (if not early), yet the doctor incessantly seems to be running three hours late. Don’t get me wrong, I realize that the person he went to go see at the hospital next door with heart attack symptoms is probably a priority over me, but really, they can’t just take a moment to get on the horn and tell me the dr. is running late, could you possible reschedule or come in a bit later? Seriously, one time we had an appt. for 3:30 pm and weren’t seen until 7pm. I asked the doctor when he finally came in if they served dinner along with the exam (and yes, I try to be sympathetic; after all, the dr. is there late too). I’ve taken to calling the office ahead of my appointment time to see if the doctor is running late and inevitably they tell me, yes, could you come in in an hour? I reply with, of course, see you in an hour. We make it to the office an hour after the original appointment time and there is still a looooong wait. Fortunately, I explain to the receptionist that I cannot sit upright for hours waiting, so I give her my cell phone number and ask if she could please call me when it’s my turn; I’ll be reclining in Big Handsome’s truck until the doctor is ready for me/us (this is quite possibly the only thing they do for me as a courtesy).

4. Gotta love it when we go in for our yearly physicals. When I call to make the appt. they always ask, “What are being seen for?” My response is, “We are coming in for our Yearly Free Physicals, and I assume there will be blood work involved, do you do the blood work in office?” To which she replies, “Yes, we do blood work in office, so make sure you fast from midnight the night before.” I make the earliest appointment so I’m sure we won’t pass out from lack of food or drink. We get to our appointment at 8:30am. We wait…and wait, and wait. Finally at 10:30 they bring us in. At this point our stomachs feel as though our throats have been cut, but we soldier on. We don’t even see the dr. for a mere physical (that’s not important enough to warrant a doctor), we see the PA. Fine, no problem. Get the physical completed only for the PA to escort us to the “Lab Lady” who then proceeds to give us a paper with our necessary lab work and tell us to go on down stairs to have our blood taken. By now it is 11:30 and we’re about to pass out from lack of food and water. BTW, not a good feeling when one has POTS and is supposed to keep hydrated. I explain to “Lab Lady” that we were told to fast from midnight because we were to have our blood work done in office; we’re going on 12 hours of no food or drink and were told by the receptionist that we’d be getting our blood work done in office. “Lab Lady” tells me, no, you have to go downstairs to the lab of your insurance to do the blood work. Let me remind those that might not know what it’s like to walk into a lab in mid-afternoon for blood work…It is now 11:30 am; the lab downstairs is slam-full of people that have made appointments. I’m now supposed to drag my dehydrated, hungry-as-all-get-out-self downstairs to wait, God knows how long, as a walk-in to get blood taken that could’ve easily been drawn in the doctor’s office. It’s a conspiracy, I tell ya’!! I swear, if I didn’t have high blood pressure and anxiety before going in…I definitely do now! Needless to say, we didn’t go downstairs; we simply made a beeline for the nearest McDonalds. I know, not the healthiest of choices, but if I didn’t get some food and drink soon I was liable to start eating my left arm (as I need my right arm to write).

5. Fast forward to this year’s physical. Well, a bit of background first. The last time I saw the doctor was for my maintenance medicine prescription renewal. The last thing he told us was, “Ah, I see the next time you come in, it will be time for your physicals. I’m going to give you your papers now so that you can get your labs done and then make an appointment for your physical and we can go over all the results then.” I thought to myself, wow how efficient! I then told him that my husband and I come in together (Big Handsome was right there next to me at the time, he’s like my American Express card; I don’t leave home without him). The doctor told me, no problem, just call the office and tell them you need his lab paper and you can come pick it up ahead of time. Sooooo, I called the office this year, explained what the doctor told me to do concerning the lab work and that Big Handsome would be in later in the week to pick up the paperwork. I get a phone call later and the “Lab Lady” tells me, “I only have the paperwork for you, not your husband.” I told her again what the doctor had told me at the last visit (see above) and she says, “Sorry, your husband will have to make an appointment to come in to get the paper.” Ok, I’m getting irritated now. I asked her rather rudely, now that I think about it (sometimes I just can’t help myself), “You mean to tell me that my husband has to make an appointment, pay a co-pay for an office visit so that he can get a paper that the doctor told me to call about getting?” Her response, “I don’t know what to tell you.” So basically, my husband has to take time off work to make an appointment, go in to pick up a piece of paper (that costs $150 mind you, because they will charge us for an office visit), then make another appointment to get our blood work done because they refuse to do it in office while we’re there even though they could if they were so inclined, then make yet another appointment for the actual physical? I was fit to be tied! Needless to say, I didn’t make a separate appointment. We go in today for our physicals, and we haven’t had our blood work completed because they refused to give me the paper prior to today’s visit. I can’t wait until the doctor opens our files to go over the results of the lab work that aren’t there. We’ll see how that goes down. Maybe I’ll get a chance to let him know what a bunch of inept people he has working for him.

6. Not related to above statements concerning my husband or me. Love it when I take one of my children in for a physical at the pediatrician’s and have blood work done (in office might I add, why can’t they call my doctor and explain how to do this, I’ll never know?) They then tell me that they will call if there are any issues with the blood work. Ok. No problem. They call a few days later and tell me to make an appointment to come in and see the doctor. I ask if there was anything serious and do I really need to make an appointment (I know, even doctor’s offices are businesses, and truly, if it is serious, I will gladly make an appointment, after all these are my gems I’m talking about). They skirt around my question just saying that the doctor told them to call and make an appointment. Of course my mind goes into overdrive, thanks to POTS and I’m thinking all kinds of horrid things that might be the problem. Big Handsome senses my anxiety over the phone and tells me, “Go ahead and make the appt. for today, I’ll leave work early.” We get to the doctor’s office and wait over an hour to see the doctor. She walks in and tells us “Your son has slightly elevated cholesterol.” SERIOUSLY???!!! You couldn’t have told me this over the phone. Here I thought my son would have to have his arm removed at the very least, Big Handsome takes off work early to rush to the doctor to hear this??? I know, I know; yes we are quite thankful that it was nothing more serious, but really??? And of course, they charged us for an office visit to boot. Big Handsome lost four times the amount of the office visit by taking off work only to find out that our son has elevated cholesterol. UGH!!!

7. Here’s another gem concerning my daughter. She is on maintenance medication and she needed a renewal. I called the office to see if the doctor could call in the prescription. The response of course was, “You’ll have to make an appointment.” I knew from experience that this was going to happen so I made an appointment. Their next question is “When would you like to come in?” I say, “When can I get in?” She tells me, “We have an opening Saturday, is that ok?” I say, “Great, make the appointment, we’ll see you then.” Saturday comes and goes, we have a successful appointment, and all things are grand. A bit later we get a bill in the mail. One charge is for the office visit, no problem, even though I’m a bit chapped that they charge me for an office visit when all the doctor did was chat us up for a while and renew her script, but I suppose everyone has to make money somehow. Anywho, I notice on the bill a charge for $50 labeled, “After Hours Charge”. I’m perplexed. No one told me at the time of the scheduling that a Saturday appointment is an extra $50, nor are there any signs visible in the office, nor is there anything on their website pertaining to this extra charge. Now, I’m irritated once again. The outcome of this is still pending.

…I’m so exhausted at this point; I don’t even think I can muster another 3 for the Top Ten. Today, Big Handsome and I go in for our Yearly Free Physical in which case, I am not going to fast because I know that they are going to give me the paper to take downstairs for the blood work. However, since my middle name is Murphy, they will probably say, “Well, have you been fasting? We were planning on taking your blood in office.” If this is the case, you might just see my name and picture on the Nightly News as “Irate Woman Stabs Office Staff in Eyes with Nearest Weapon, a Stapler”.

And people want to know why I hate going to see a doctor, abhor making doctor’s appointments et al. Can’t wait to see what today’s appointment brings. God-forbid I mention anything dealing with POTS or any other symptoms because certainly they will code it so that they can make more money off me and I’ll have to spend countless hours on the phone with the insurance company. I can already feel my blood pressure rising…

This really turned into rather a rant than a list…sorry ‘bout that! I do feel a bit better having gotten it off my chest though J

*I do apologize (although not entirely sincerely) to those that are doctors, work in doctors’ offices or labs or have associations with the aforementioned people. Seriously, get your shit together!

My Day

I decided to do a post about what my day typically looks like. I’ve seen this done elsewhere, but for the life of me can’t remember where I saw it. I would love to give credit where credit is due, however since I can’t remember what happened this morning; I simply can’t recall where I found this; my apologies.

Every day is different due to symptoms, schedules and whatnot. I might decide to go back to this on numerous occasions just because every day is so different, thus will yield various results. Here goes:

Outside my window…It is a beautiful sunny day with a slight breeze. The palm trees are swaying about, and the birds are singing their little hearts out. As I lay in bed looking out the window directly in front of me, my gorgeous, inviting swimming pool (that Big Handsome so graciously had put in a few years ago) is beckoning to me…”come lay by me, come drink in some sun, come swimming, come, come, come…” Alas, I have not the energy, maybe tomorrow.

I am thinking…I have so much to do and not enough energy to do it, so I’ll sit here in bed, with my beautiful pool trying desperately to lure me in and type a blog post.

I am thankful…That I have a beautiful pool, but am getting a little annoyed with it as it continuously tries to vie for my attention.

In the kitchen…At least the clean dishes are put away. I still have to clean the dirty ones and put them away. I need to clean up the coffee from this morning and set it up again for tomorrow so that Big Handsome gets his fix in the morning.

I am wearing…My usual, a house dress. At least it’s not a Moo-Moo; it’s purple and has pretty embroidery on the back.

I am creating…A word flip book for my 5 year old nephew. I used a 5x8 spiral notebook that I turned horizontal. I then covered the front cover with nice, boyish scrapbook paper. I cut the pages into two parts; the one on the left has been cut about 1/3 of the page, the other side is 2/3 of the page. On the left side I have written consonant letters (one per page) and on the right, I have various short vowel endings like, at, ag, ab etc. My hope is that he can take it in the car or where ever and practice his short vowel, three letter words in preparation for starting kindy next year.

I am going…Nowhere today. Maybe I’ll venture into the kitchen at some point to do up the dishes and make the coffee for tomorrow. I might even conjure up some energy to appease my pool.

I am wondering…What I always wonder and have a hard time not dwelling on…will I ever be rid of this crappy illness?

I am reading…Presently I’m reading nothing except what I’m typing. I do have lots of books in various areas of my house that I read. On my patio, where I spend a lot of time, I have “Never Be Sick Again” by Raymond Francis (which is slow-going), and “Coping with Chronic Illness” by Wright and Ellis. This book has been such a tremendous help to me and I have referred it to many. I also have my medical notebook on the dining room table that has articles that I have found on various illnesses that I read and reread so I can familiarize myself with any and all research I can get my hands on. In my room I read “The Thorn” by Beverly Lewis and “A Bride for Tom” on my Nook.

I am hoping…That I can complete my medical notebook in time to take it into my GP next week so that maybe, just maybe we can move forward in finding a definitive diagnosis for what the heck is wrong with me.

I am looking forward to…A vacation in the coming weeks with the family. Big Handsome finally has some time off and we all look forward to a wonderfully relaxing week at the beach.

I am learning…That I need to be more assertive.

Around the house…My kids have not begun their schoolwork for the day and it’s almost noon. UGH! I need to stop writing and go light a fire under their rumps.

I am pondering…Will I ever get better?

A favorite quote for today…”You never know how strong you are…until being strong is the only choice you have.”

One of my favorite things…Big Handsome

A few plans for the rest of the week…I plan on having a relaxing weekend with my family and trying my best not to have a freakout/breakdown.

 

A few hours later, I decided that the pool could wait no longer, so my daughter and I went out for a spell...

Seriously, who wouldn't want to sit outside on a day like today?? Sadly, my Cabana Boy was still at work.

All good things must come to and end however...

I'll tell you, a tad of tachycardia can put the kibosh on just about anything.

Fun-squasher!!!





An Arduous yet Necessary Task

One of the most important lessons I’ve learned along the way is to try to keep all medical records. Unfortunately, I’ve had to learn this the hard way.

I’ve been trying to compile a notebook with all my information as seen on a post at a most awesome blog: http://justmildlymedicated.blogspot.com/2013/02/being-your-own-medical-detective.html . Sadly, my section for labs/test results is quite slim. I guess I just have to begin somewhere and as I continue on this roller coaster ride, be sure to collect my records as I go. There are so many things in my past medical history that I now question as to whether they could be contributors to my illness, but I don’t have any records in my possession. Some of these issues were years ago and in some cases, I can’t even remember the doctor’s name.

For instance, years ago I experienced vertigo that was diagnosed as a viral thing. I was sent to a Neurologist for an MRI, nothing really came of it and I never saw that Neuro again, nor do I have records of the visit or the results. I also had some sort of Mumps virus a while back, but again, don’t have records of it. I was diagnosed with MRSA over 10 years ago, yet again, have no records of it. All these things could have been causative factors and I question all the time if any of these issues or a combination of them could have contributed to my state of health now. Point is…I don’t have records for any of this and again, in most cases cannot remember the doctor’s name.

Of course with my luck (just call me Murphy), in each case I saw different doctors. With insurance changes over the years and whatnot, I’ve never had any one doctor for a long period of time. My current GP is the only one that I have seen on somewhat of a consistent basis and that’s only been for the past 2 years. I so wish my children’s pediatrician was an adult doctor; we’ve been seeing him for 17 years.

Even though I was diagnosed with “what is probably POTS” back in 2009, I can’t help but wonder that there might be other health issues going on. The only way that I can know is to keep track of my vitals, symptoms, etc. I found a wonderful way to keep track of all these from yet another great blog: http://lethargicsmiles.wordpress.com/2013/04/01/daily-log-to-help-find-patterns/ . I used this as a template and made up my own document on Word that fits my personal needs, but this was a great jumping off point and I must thank Lethargicsmiles for it.

In my particular notebook I have the following sections so far in no particular order:

 ~A brief history of previous illness of which I have no records.

 ~A brief history of my illness beginning in 2009 to present.

 ~A list of all doctors I’ve seen and all medications/doses etc. Including  meds that I’ve had adverse reactions to.

 ~A section, however small at the moment, of my tests, labs and reports.

 ~A section on articles about POTS and any other syndromes I have questions about, in my case, Lupus, MCAS, Subtypes of POTS to name a few.

 ~Business cards of doctors I’ve seen.

 ~A section for questions to ask.

 ~A section for my daily logs.

 ~A section for current symptoms. I made chart for these based on frequency (Daily, 4-5x/week, 1-3x/week, Rarely/Never and Don't Know).

I will add to and subtract from as necessary, but I am hoping that this tool will be vital in my search for a true diagnosis.

 Moral of the story: When one is diagnosed with some weird-off-the-wall syndrome, it behooves said person to keep track of any and all information so as to receive the most comprehensive care. I think that it is imperative that I/we take control of my/our situations in life and it’s best to be prepared. Hey, it’s always worked for the Boy Scouts, why not us too??

Hopefully the doctors won’t think I’m some whackadoo with OCD tendencies and send me off to the nearest padded cell, in which case I hope there is a designated shelf for my notebook!

Top Ten Tuesdays

Alrighty then…I’m finally on the ball for today’s Top Ten Tuesdays!!

This week I decided to put some of my favorite quotes up. Some are funny and some a bit more serious, but I feel they are always helpful and wanted in my world. I’m always on the lookout to try to find the humor in things (even in this more-than-pesky illness) and to find encouragement where I can. To my knowledge these quotes are from authors unknown.

Hopefully you’ll get a laugh or some encouragement from them also.
Be well J

Top Ten List of Quotations that bring me Laughter and Encouragement:

1. “May your life be like toilet paper…Long and useful.”

2. “If at first you don’t succeed, then skydiving definitely isn’t for you!”

3. “A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort!”

4. “Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain.”

5. “I’ve learned that it’s those small daily happenings that make life so spectacular. So start enjoying those little things in life—it does make a difference.”

6. “I’ve learned that the easiest way for me to grow as a person, is to make sure that I surround myself with people smarter than I am.”

7. “I’ve learned that life is tough, but I’m tougher!”

8. “Time goes by so fast; people go in and out of your life. You must never miss the opportunity to tell these people how much they mean to you.”

9. “Defeat may test you; it need not stop you. If at first you don’t succeed, try another way. For every obstacle there is a solution. Nothing in the world can take the place of persistence. The greatest mistake is giving up.”

10. “If you cannot help worrying, remember that worrying cannot help you.”

A few bonus quotes, because I just can’t help myself:

** “Life can either be accepted or changed. If it is not accepted, it must be changed. If it cannot be changed, then it must be accepted.”

**”To reach a great height, a person needs to have great depth.”

**”You have to do what others won’t. To achieve what others don’t.”

**”Tears are words the heart can’t express.”

**”If you cannot help worrying, remember that worrying cannot help you either. Today is the tomorrow you worried about yesterday. If you worry you die, if you don’t worry you die, so why worry?”

**”Everything will be alright in the end, and if it’s not, it’s not the end.”

Great Post From Fellow Potsie

This is an awesome post from an awesome lady. Michelle is a former Neuropsychologist turned chronic illness sufferer and health advocate.  She is awe inspiring, more than funny, has a wealth of information and is a terrific writer. She puts into words what many of us feel in such an eloquent way.

 

If you haven't checked out her blog, find it here: http://bobisdysautonomia.blogspot.com/

You'll definately be glad you did.

 

You rock Michelle :)

 

Dear Doctors.

By: Michelle

Dear Doctors,

A young patient presents at your ER/clinic/rooms, with unexplained symptoms of chest pain and fainting.

What is you first response?

I'd hope that you'd investigate.

I'd hope that you would take it seriously.

I'd hope that you'd reassure your patient that you believe them, and will do your best to help them.

But sadly, this response seems to be the exception, and not the rule.

"You're just anxious."

"You're just depressed."

"You're too young for [insert illness of choice]."

"You just need to get out more."

"You're wasting our time."

This is what far too many patients encounter.

Do you know that your response in that moment can influence that patient's relationship with the medical system for years to come?

Do you know that your response can make or break that person's sense of self?

Do you know we come to you because we are scared?

Do you know we come to you because we trust that you can help us?

Do you know that you can crush that trust with an uncaring word or flippant attitude?

Do you know that rare, doesn't mean non-existent?

Do you know the tears we cry and anger we feel when we are casually and sometimes callously dismissed because you could not find the problem after some basic bloods and a quick check of our vitals?

Do you know how we second guess ourselves and avoid seeking medical care in the years to come because maybe you are right, and it is in our heads?

Do you know we now no longer trust the medical system because you, the expert, you who we imbue with hope and power, told us we were crazy or wasting their time?

Do you know many will fail to get the treatment they need because you made them feel like a hypochondriac?

Do you know many will lose jobs, relationships, lives, because they will no longer seek care for their symptoms for fear of dismissal or ridicule?

Do you know that even when we find a doctor who can put the pieces together, we are hampered by that one exchange we had with you?

Do you know that we mistrust the compassion and understanding we receive from that doctor because our trust was dashed by your indifference and disregard?

Do you know that we will spend years trying to overcome the damage you created in that one exchange?

Do you realise the power you have?

We come to you scared.

We come to you with trust.

We come to you with hope.

We want to believe.

We want to feel better.

You may not understand our condition.

You may be frustrated by a lack of clear results.

You may be overworked and tired.

But do not forget your power.

Do not forget that you promised to first do no harm.

Do not forget you are dealing with a person, not a bed number.

Do not forget that in that moment we are vulnerable.

A kind word.

Genuine concern.

A simple admission that you don't know.

Will build trust.

Will build hope.

See us as people.

See that there are real world, long-term consequences to how you interact with those who seek your care.

You have the power to make or break a person's entire experience with the medical system.

Remember that before you speak with your next patient and use your power well.

(I've woken up to a bunch of emails asking if people can print this post out and give to their local doctors, hospitals, medical schools etc. Rather than reply to all and because I am time and energy poor at the moment, the answer is YES feel free to copy and share. All I ask is that there is a link back to the blog URL and authorship noted.)

Shout Out to My Big Handsome

I wanted to give a ginormous shout out to my Big Handsome. Let me just tell you that my Big Handsome has been my lifesaver.
 

A bit of our background: I was just out of high school when I met Big Handsome through one of my older brothers at a Youth for Christ youth group. I had been going to the group most of my high school years. Big Handsome was a few years older than me and in college locally.

I’ll never forget the day I laid eyes on him. I was in my girlfriend’s car getting ready to leave and in the rearview mirror I saw a little red truck pull into the parking lot. I had never seen the truck before and was intrigued as to who this new-comer was. Then I saw the most beautiful male specimen (in my opinion) climb out and walk toward my brother. He was wearing a tight blue and white pullover and a pair of stone washed Edwin® jeans (it was the 80’s after all). I told my friend, “Pull back in, and let’s see who he is!” I jumped out of the car and did my best impression of a nonchalant run/walk over to my brother. My brother introduced us and immediately, the cat got my tongue! I muttered a shy, quick hello as I stood there mesmerized by the most incredible smile complete with a perfect set of pearly white teeth. I was lost in his smoldering, bedroom sea-green eyes. His set of pecs weren’t so bad either (I’m just now realizing that I’m not writing a romance novel J ). From then on my friend and I nicknamed him The Model. Let me tell you, I wasn’t the only female that night drawn to him either. He was the proverbial “chick-magnet”. I thought to myself, I’ll never have a chance with him as I stood there watching all the other girls swoon over him. But, the Lord had something else in mind.

I also had something the other girls didn’t have, a brother with whom The Model was friends. Over the next several months we became fast friends. We would talk for long periods of time and he was at our house a lot, first to see my brother, then slowly to see me (that was my hope anyway). That was 25 years ago…

Fast forward to present: As most of you know by now he is tall, dark and oh, so handsome, so much so that every time I see him I still get butterflies. He is also my best friend, lover, soul mate and someone I would lay my life down for. We have been married 21 glorious years (ok, maybe some not so glorious, but who doesn’t experience that at some point?), and have been together 25+. He has taught me the true meaning of loving someone “in sickness and in health”. Over the years, he has taught me that love is not a feeling; it’s an act of your will. He has chosen to love me, all of me (illness included), and tells me often that he wouldn’t want it (our lives) any other way. It is so wonderful to love, be loved, but is such a blessing to also be “in love”.

He has been with me through it all: the doctor’s appointments (and there have been many), the turmoil, the depression, the life altering anxiety, the victories, the “I’m done” phase, the crying, kicking, screaming, throwing myself on the bed, the “why me” phase…like I said, through it all. He has taken over the grocery shopping, meal planning, cooking, taking/picking up kids from various functions, running bunches of errands, putting up with me (which in and of itself is quite the job, see above) and all of this on top of having his own health issues as well as a very demanding, stressful job that keeps him on call for what seems like, 24/7/365. He is, for all intents and purposes, my Superman.

We were watching the movie “Touchback” the other night. If you haven’t had the chance to watch it, try to watch it. It is one of those tear jerker, emotional, inspirational type movies. There is a song at the end called “Nothing Without You” by Phil Vassar. This has now become our new song. Big Handsome plays it every chance he gets and even sent me some of the lyrics in his daily love letter to me this morning (yes, he sends me little love letter emails every morning; one of the reasons I get out of bed each day).

He is by no means perfect (even he will tell you), but one thing’s for sure, he’s perfect for me.

My hope and prayer for our children is that they find a husband/wife that is half the person my Big Handsome is.

So…here’s to you my Big Handsome J Thank you for your love and devotion, for your integrity, your work ethic, your positive attitude, your chivalry, for your example to our children of what a great husband looks and acts like, and most of all for loving me through everything. You are my hero and I’m nothing without you.

P.S. Just told Big Handsome that I was doing a shout out to him on my blog. His response, “Better than being shouted at!” I just gotta love my Big Handsome J

http://youtu.be/FqLIy4bWFqU

Top Ten Tuesdays

As some of you might know, I love, love, LOVE Pandora, so here is my Top Ten for this Tuesday:

Top Ten List of Pandora Channels as Seen on my List as of Right Now:

1. Spiritual Waterfalls Radio: I looked up “nature music” and came up with this channel. I usually listen to it in the wee hours of the morning while trying to relax and fall asleep.

2. Amazing Grace [Instrumental] Radio: Again, I usually listen to this in the early morning hours while I’m trying to relax and fall asleep. It helps me to know that my Lord is always looking out for me.

3. Loepold Mozart Radio: I love classical music, I can’t help it.

4. Yo Yo Ma Radio: I happen to really enjoy the cello. Even my son (15) said the other day when we heard the cello on the tv, “I like to listen to the cello when I need to relax.” Wow, who knew??

5. Bagpipes Radio: A shout out to my Big Handsome’s heritage.

6. Indian Vibes Radio: Seriously, who can resist the sound of a sitar???

7. Tibetan Monks Radio: I can see a pattern here, can you? I’m in constant need of relaxation it seems. Who wouldn’t I guess, if you’re trying to calm yourself after a spike in heart rate?

8. Evanescence Radio: I listen to this station while I’m out on my covered porch working on my blog and/or surfing the web. This station is one of my favorites because it has a bunch of other groups like: The Fray, Hoobastank, Daughtry, The Goo Goo Dolls, The Script, One Republic, and so many more J

9.Taylor Swift Radio: Yes, I’m a country girl at heart. I so enjoy listening to ballads about lost loves, cheatin’ hearts, blah, blah, blah…

10. Zac Brown Band Radio: Again with the country. Who doesn’t like a song about their toes in the water and their ass in the sand with a beer in hand? If it were up to Big Handsome and me, that’s where our toes and asses would be all the time and we’d have a beer in our hand!!

It seems as though this list is fairly well rounded, I would say. I guess I should explore more of Pandora to see what else I like.

Top Ten Tuesdays

Top Ten Tuesdays have once again sneaked up on me. UGH!! Will I ever catch up?? That is the question. I can only do what I can when I can.

Last week I wrote a letter to POTS telling it exactly how I felt. Much of it was negative as that has been most of my experiences living with this dreaded disorder. There have been, however some positive aspects to having/dealing with chronic illness. Thus, my Top Ten Tuesday list will be about things I have gained and learned along this tumultuous journey of living with POTS. Here they are in no particular order:

Top Ten Things I’ve Learned through This Illness

1. I have learned that not all doctors are idiots. Yes, you heard/read correctly. Even though there are many out there that I have had negative experiences with, there are those that attempt to listen and help.

2. I have had to learn patience. Patience is a virtue I have never really possessed, however in these last few years I have had to learn that it is easier and healthier to be patient than it is to be worried and aggravated.

3. I have learned that I am a stronger person having had to deal with the ups and downs of this illness.

4. I have learned the meaning of true love and being in love through the selfless acts of my Big Handsome. He has shown me what “in sickness and in health” really means.

5. I have learned to cherish the little things. Sometimes the little things are all I get these days and I have to cling to them.

6. I have a renewed relationship with my Savior. I shudder to think where that relationship would be had I not been diagnosed.

7. I have learned the need to rely on Him daily and am better for it. He will never leave me nor forsake me.

8. I have learned that it is important to be one’s own advocate. No one is going to do the work for me.

9. I have learned that while I can’t control my physical situation, I can control the way that I react and respond to my illness.

10. I have learned that I have the ability to choose happiness.

Bonus: I have learned that though sometimes I might be helpless, I am NEVER hopeless J

My Letter To POTS

I recently read on a forum about writing a letter to one’s chronic illness, in my case POTS. WOW, what an idea! I’ve wanted to write a strongly worded letter to someone for some time now; why not write one to my chronic illness? I have so much to say; here’s my chance. Buckle down; this might be a long one…

The other day I was driving and the song My Immortal by Evanescence came on the radio. As I was listening to the lyrics, I began thinking of my letter to POTS. This song strongly resonates with my feelings towards POTS.

So…here goes my strongly worded letter, albeit not as strongly worded as I would like it to be; I feel I must maintain some semblance of self-control. On second thought, maybe I will just say what’s on my mind. This is my blog, is it not? I can write anything I want and I really want POTS to know exactly how I feel.

 Dear you cranky-ass pile of @%&*$*%^$*!!,

          I really hope you are having a crappy day, because if your day is going well, that would mean that mine is not. Most days you seem to revel in my desperation. That’s just not nice…at all. I’m tired of you running and ruining my life. I guess I should really say that I’m tired of allowing you to run and ruin my life. I don’t really have a choice in the matter though and that’s the sucky part.

          I’ve given up so much for you. My family has suffered so because of you. You’ve taken away my ability to do so much. Why can’t you just allow my heart to beat normally, not too slow, not too fast, you know just right (kinda like Goldilocks)? Enough with the anxiety already too! It’s bad enough on a normal day, but you have to go and totally screw with my anxiety so much so that the littlest thing completely sends me into a tailspin. You can’t just leave my emotions alone either; at times I can’t even get through a supermarket commercial without breaking down into tears. Clearly you get some sort of pleasure out of me having to do laundry and clean my sheets from all the night sweats you put me through too. Seriously, how much can one person take?? While I appreciate a little bit of weight loss, clearly you are out of control. Could you just for one day lay off and let me have an appetite, maybe even enjoy a meal without wanting to hurl?

 Do you honestly think that anyone enjoys the feeling of not wanting to do anything? If you think that I like having people tell me that maybe I should exercise more, maybe I should get out more, maybe I should eat better or stop my bad habits, you’ve got another thing coming. No one likes to hear these remarks. They are insensitive and hurtful and it’s all because of you. I’m really quite pissed off at you, however I guess as Big Handsome always likes to say, “better to be pissed off than pissed on”.

          You are like a car that makes annoying ticking noises for days on end, but when the car is taken to the mechanic, the incessant noise is nowhere to be heard. It’s akin to having all these symptoms and when I finally get to the doctor, you seem to mysteriously disappear only to leave me holding the proverbial bag.  By the way, do you think I like spending an inordinate amount of time on the toilet because I’ve been told to drink more water, which by the way, doesn’t even help me all that much? Every time I go out (which isn’t that often, thanks to you), the first thing I have to do is scope out where the restrooms are located; yeah, not the makings for spontaneity.

          It would be nice to have friends, but noooo you’re not just satisfied with turning my whole world upside down, you’ve got to take my friends as well. Who wants to be around someone that might keel over any minute, or with someone that might need them to call 911 at a moment’s notice? Most people don’t want to get involved, and get it for once; most people just don’t want to be around sick people. I know I don’t!!

          Could you cut out the tinnitus by any chance? I mean really, this constant ringing in my ears is enough to make a sane person go crazy! If I’ve said it once, I’ve said it a million times, if the tinnitus is going to stick around, isn’t there a way to have it play Tchaikovsky or at the very least some songs from The Fray or Nickelback; I’ll even take The Goo Goo Dolls? And what’s up with my eyesight going to pot? Now, I need reading glasses which isn’t all that bad if that was the only thing I had to worry about. The constant protozoa-type organism thingies that are floating all over my field of vision are a little much, don’t you think? Seriously, sometimes it is rather calming to watch them float by, but I’m sure I can come up with many other exciting ways to spend my time. You are putting a serious damper on my life.

          In order to get you to fully understand how I feel (if I haven’t expressed enough already), I’m going to relate you to the song “My Immortal” by Evanescence. I’m sure there is some reason behind these song lyrics, but I love that people are all individual and thus have varied perceptions and interpretations; it's what makes everyone so unique. This song (at least the first part) seems to fit my situation with you. Many people have love-hate relationships. Just so you know, my relationship with you is definitely hate-hate.

          Back to the song…”I’m so tired of being here”, I am just so tired of being in this situation with you, and you never seem to let up. There never seems to be a day that goes by that I’m not reminded of you, some way, somehow. I'm sick and tired of being sick and tired. “Suppressed by all my childish fears”, forget childish fears; how about every fear in the book? You cause me to fear everything. I fear the unknown. I have fear of dying and leaving my family behind. I fear that I will never be rid of you and able to lead a half-way normal life. I fear the fear, and it’s all because of you. Why can’t you just leave me alone already!?! “I wish that you would just leave”, oh, how I wish you would just leave. You know the saying “you don’t miss something until it’s gone”? Well, guess what? Newsflash! You can leave anytime you want and please don’t feel the need to return on my account, ever again. By the way, don’t let the door hit you in the ass on the way out. “Your presence still lingers here and it won’t leave me alone”, please, just leave already! I really don’t know how much more plainly this can be put. I don’t want you here, I never wanted you here. I still don’t know why you’re here. “These wounds won’t seem to heal, this pain is just too real, there’s just too much that time cannot erase”, every time I try to understand you and to work with you, you just laugh in my face and throw another wrench into my world. Not to mention that doctors look at me like I’m crazy, like they’ve never encountered a person with a bazillion symptoms that don’t seem to point to anything in particular so they slapped me with the diagnosis of you. "When you cried I'd wipe away all of your tears. When you'd scream I'd fight away all of your fears. And I held your hand through all of these years, but you still have all of me", I've been there with you through it all  (not by choice, mind you) and you still have me. I don't want you to still have me. I have so much to give and I really don't want to continue to waste it on you. My family and I deserve more. "I've tried so hard to tell myself that you're gone, but though you're still with me, I've been alone all along."

          The pain you’ve put me through, emotional, physical, mental and spiritual is enough to do anyone in. Well guess what? I’ve got news for you! YOU CAN’T HAVE ME!!! I won’t let you. You might knock me down for a few hours, a few days, a few months, even a few years, but I’ve still got some fight in me and like a mama bear to her cubs, I am willing to fight you to the death…your death that is.

In the words of Liam Neeson from the movie Taken (with a few adjustments):

“I [do] know who you are. I don’t know what you want. If you are looking for ransom I can tell you I don’t have money. But what I do have are a very particular set of skills. [Internet skills] I have acquired over a very [short time]. Skills that make me a nightmare for [things] like you. If you let [me] go now, that’ll be the end of it. I will not look for you; I will not pursue you. But if you don’t, I will look for you; I will find you, and I will [get rid of] you.

Heed my warning!! Be afraid, be very afraid!! I will find out your reasons for invading my life and I will find a way to defeat you, not only for my sake, but for the sake of my family as well.

You’re an A$$,

~Never Hopeless…so there!

P.S. Believe me, I have so much more to say to you. I didn’t even mention the migraines, constant headaches, general malaise, sensitivity to medications, the fact that I even have to be on medications in the first place, the fluctuations in blood pressure, not being able to do what I want, when I want; oh, I could go on and on and on, but as usual, you have totally exhausted me again…

My Immortal ~Evanescence

 

Top Ten Tuesdays

I don’t really have a Top Ten List for this Tuesday unless anyone wants to know what is on my grocery list. I suppose I could list my blood pressure and heart rate readings, but that might be a bit boring.  I could list all the doctors and their idiotic suggestions I've been to and received over the years, but been there, done that. I could list all the things I hope to accomplish, but that would probably just set me up for failure. Quite frankly, I’m just happy to have accomplished brushing my teeth this morning.

I could list the beginnings of a bucket list, but as above, that just might set me up for failure and I really don’t need any of that. I could list my blessings, although thankfully that list would far surpass just ten. I could list some of the love letters Big Handsome sends to me each morning, but those are quite personal and I wouldn’t want anyone to get jealous, or barf as my good friend always tells me she wants to do when I tell her how wonderful Big Handsome is to me J.

I could list all the “but” statements I just typed, but I’ve already done that, they are just not in list form.

Not feelin’ the whole list thing this morning. I need to work on my lists and try to compile a list of lists so that I have something to write about on Tuesdays.

Be well J