Tuesday, September 18, 2012

Eff you doctor- I'm billing you!

Below you will find the invoice that I'm submitting to my neurologist. Now, this can go a few ways- I will get a positive response, a negative response, or fired as a patient. Regardless, I believe I made my point. Sometimes people need reminders that there are other fish in other fish tanks. Call me snarky, unreasonable, irrational, whatever you want... I used my 'I' messages so as to de-puff any feathers that might get ruffled. And I really don't care to get sued for libel or slander so I didn't list his name or his company...Ask yourself what would you do? Would you fight? Sit and take it? Do doctors have an excuse to be irresponsible in making good on follow through? They're human- we all make mistakes- I get that. When do we demand excellence in our healthcare though? He works for me- not the other way around. If I left it wouldn't hurt his bottom line at all, but I sure do have a big mouth :)

INVOICE:
Term: 30 days


Description                                        Quantity                           Unit Price                      Cost

Time spent waiting for call            36 working hours               $50.00                         $1,800
back- M-F 9/10-9/14 + 9/17-
 allowing 6 hours per day
   
Compensation for 3 calls minimum         3                               $ 35.00                       $ 105.00
in to XYZ

Gas mileage for 2 personal visits to         2                               $ 20.00                        $ 40.00
office for phone call reminders  

Promise to call a Px back by the end of    1                           $ 1,000.00                  $ 1,000.00
the week and failing to do so for
unreasonable period of time.   


Recalling Px time is as valuable as Doctor time   1               $ 1,000.00                 $ 1,000.00

Failing to communicate collaboration with PCP    1               $ 500.00                   $ 500.00

Compensation for anxiety and stress to Px        1                    $ 1,000.00                 $ 1,000.00

Preemptive strike against excuses           1                                $ 50.00                     $ 50.00
   
                                                                                          Subtotal    $ 5,495.00

                                                                                           Tax    8.25%    $ 453.34
                                                                                                                              
                                                                                            Total    $ 5,948.34

Dr. XYZ,

Above you will find an itemized list with the associated fees. I regard my time as valuable and would like to see that professional courtesy returned. I left my appointment on 9/4/2012 with several reassurances that I would receive a personal phone call back ‘by the end of this week’ meaning no later than 9/7/2012. Since that time I have made multiple calls and personal visits to the office. This is a complete mockery of me and my time.

As a patient I am expected to arrive on time, money in hand, or face a charge for missing an appointment plus another 8 month wait to be seen again. As my medical provider I expect the same courtesies in return. I expect my cashier at the drive thru to provide me with courtesy and completeness  of my order- so I have even higher expectations for the doctors I employ for my care.

As of 9/18 I still have zero direction on my health care, zero direction on any potential new ailments as it was stated my (now OVER a year long) current symptoms are unrelated to MS, I have zero direction on tests, spinal taps, MRI, and the sort that need to be completed, and I have zero direction on a return appointment.

The initial 72 hour wait time was a reasonable request, tho typical is 24 hours for most professionals. The 336 hours that have passed are beyond reasonable- also note the multiple phone calls and personal visits to the office in which to remind that a phone call was still needed. Therefore, I am submitting this invoice to demonstrate that I can not live in stasis, that I need an immediate response, and to point out that a promise to call ‘by the end of the week’ means by the end of the week. When our health is failing- every day, every hour, and every minute count.


Sincerely yours,

Sonja Armstrong



(I am still in need of funds for surgery if you find a spare $5.00 and don't need food, gas, or to pay your own bills I could put it to good use! And, I can juggle for it too!)

Thursday, September 13, 2012

Follow through- it's not a dance move.

Hate. Disappointment. Loathing. Disgust. Rage. Annoyance. Irritation. Enter more words along these lines here ------> This is how I'm feeling about the neurologist at the moment. You know... the one that was going to personally call me back last week with all this new information, new direction, a few tests to get done to rule out a few systemic ailments before I hop on that plane for my now postponed surgery? I bet you a dollar you already know if he's called or not.
 
Has anyone ever seen this:



As a former person of the education field I got my ass chewed for not responding to emails, phone calls, homing pigeons, flares, texts, hieroglyphics, and the sort within 24 hours. We expect a level of professionalism from the drive-thru cashier at McDonald's for crying out loud. Why do you think we check the bag before we drive away?!? Because we expect our orders to be complete and correct!

How is this any different from when doctors are withholding information from you? How is this any different from when they practically pinkie promise to call you back personally? It's been one full week since he said "I'll call you personally." It's been 72 hours since I called and left a message at his office. Why is it that I'm treated like an ass when I demand the same level of service from him as I do my drive-thru cashier? I'm supposed to go in there in person and tell them again again "HEY! I'm a human being and I have a life! I've had a fever for a year, green shit for a year, and a promise of some direction that was supposed to happen LAST WEEK!" Guess who looks like the ass? Him for dropping the ball multiple times, or me for forcing them to do their job? I bet you another dollar you know that answer to that question too.

 I fear the day that I'm no longer pissed. I fear the day the inner tiger dies. I'm still drained, still hitting that brick wall every day, still needing another 3K for surgery, still hoping that it will deliver me back to normalcy... but man... once that inner drive and tiger have laid to rest, I'm fairly certain that it will be impossible to come back. Sometimes people just have to say 'enough is enough' and hang up their boxing gloves. Nothing in life is easy right? But who says it has to be such a fight? All those years in dance lessons and I've never heard of the follow-thru move. So it must be something else.

My point in writing is to let you all know that I'm still here... I've not given up hope, though I'm certainly very tired... I'm waiting and not tolerating it well, and to remind you all of a simple life lesson... If you say that you're going to do something, DO IT. You never know the impact that it will have on others.

Even tho I've postponed my surgery, I'm still going to follow through with it. And I still need your help getting there. And if you see me tomorrow with steam blasting out of my ears, flames shooting out of my eyeballs, and I'm grasping a jar of honey, please know that I'm talking myself into the 'easier to catch flies with honey' nonsense and on my way to the neurologists office.

Wednesday, September 5, 2012

The midnight hour...

I've been mentally and physically preparing for this procedure for what seems like a very long time now. My emotions have been sky high, my hopes and dreams have been dangling right in front of within grasp... And life has a funny way of introducing a different agenda at the midnight hour.

My neurologist is fabulous. I went through hell, if you recall, to see him in the first place. After a terrible appointment with his now former colleague, the flaming hoops I had to jump through with his office manager, and the sea of poison sea urchins I had to swim past, I finally made it in. Well, I'm not the only one in this city that knows his reputation. So seeing him is practically impossible. I see my primary care doctor for pretty much all of my needs, MS included. It has been over 1 year since I've actually seen my neurologist. What doesn't help is that both my primary care doctor AND neurologist don't want me seeing the Nurse Practitioners. Only the doctors will do for this little lady. Today, the day before I fly away to get my life back, I finally see him. And it was a whopper.

It had been so long since I'd been to his office that, not only did they move offices, all of my information was in need of renewal. So I sat there, pen in hand, clipboard in lap, filling out the same paperwork I did all those years ago. And after 92 years of waiting, I made it back for my appointment.

The chats are always the same- what's new, what's changed, how are you feeling, blah blah blah boring blah. Today however, I had a lot of updating to do. First it was the shock that my migraines have increased. I have as many in one month as I used to in one year... Then it was the low grade fever I've been walking around with for (you'll all LOVE this) nearly 1 year. Yep, I've had a fever for ONE YEAR. Yes, you may shake your head. It's persistent to say the least. Then came the update about weirdo green discharge coming out of my breast for ONE YEAR. Isn't that lovely? Then the brain fog, then the memory issues, then the ferocious fatigue, and the this that and the other too... Neurologist is now firing up the hamsters, wheels are spinning, he leaves the room and comes back a few times to check various tests, labs, MRI's, etc., that I've had done in the past, and finally he sits back down.

Just as an aside- I am really tempted to write THE END here and leave it at that. Oh the cruelty! I won't be an ass... I'll continue on.

So there we are sitting. My top half is completely drenched in sweat because it's so hot, my lower half is freezing cold. "Sonja" he says, "your MRI's are showing that you are improving. There is absolutely NO way that your set of symptoms is related to MS." WHAT?!?! Brain fog doesn't have fever as a symptom, nor do any of my other gremlins that are lurking about. He said that he believes that there are 3 things that could be causing my gremlins to multiply- and water is not one of them.

1. Depression- totally makes sense right? I've lost my ability to do what I once could, I have lost my income, I have to fly far away for a procedure that isn't covered and is causing anxiety and stress so it fits right? Depression doesn't have fever and nipple discharge. 2. Tumors- ummmm... my MRI's are showing that my brain is fabulous (pat self on back and laugh at all no brainer jokes here) so tumors are out. Or 3. Unknown underlying systemic issue. Guess which one we went with... #3. So what does this all mean? I'll tell you in a bit.

Chloe is home sick. I'm not very happy about this. Dan has no time off for work. Me flying out to Dayton means sick Chloe goes to school. Chloe when sick has a tendency to stop breathing. Not good. Sonja is now sick. Flying to another city and having a procedure while sick? Fabulous. Doctor's collaborating about the hot mess that is currently my nervous/neurological/systemic components of Sonja. I'm getting yelled at here and I have to listen.

My brain has improved, by body isn't working right. I am now the proud owner of a new title called 'unknown diagnosis'. My neurologist and I think that it is extremely important that I get another MRI done to rule out any rapidly growing tumors, and to get another spinal tap done to see what my immune system is up too. He agrees that one year is a tad excessive to be sporting a fever and green sludge from good ole righty. He wants this done ASAP.

One thing about being sick with MS is that it makes my body go into a total tailspin. NOTHING functions properly. NOTHING. I'm ok with it now. It used to freak me out. But once the cold/flu goes away then things return to normal. I'm currently in that nose dive waiting for the all clear to pull back up. It'll come. I'm patient-ish.

So all of this means that I need to postpone my procedure. I'm sick- so it wouldn't be a good idea anyway, and my neurologist would really like to figure out what is going on with me without introducing yet another variable into the equation. I can respect that. When you have a list as long as mine it's sometimes a good thing not to add to it.

So where does that leave me? Well... honestly? I'm a great many things. I am relieved that someone is on the ball and wants to get things squared away. I am feeling tremendous guilt because I've had so many people help me out and I feel that I'm disappointing people for postponing this shindig, I'm annoyed and frustrated to be at square one again with what currently seems like no real direction.

I promise you all this- I'm one stubborn gal and it'll take more to knock me down. Hell, I've been walking around with a damn fever for a year leaking green shit- I think I can handle a slight delay.

I'm sure that you are all understanding and supportive about my decision. It wasn't easy. But I have to make me my first priority here. And right now that means I need to get well, get tapped, and get more hours logged in the MRI machine.

I will still need your continued help and support in reaching my goal, staying positive, and keeping that feisty spirit. Looks like my boat is still adrift. Will cast anchor soon.


Saturday, September 1, 2012

A Letter to My Daughter...

Several years ago my husband was scheduled to have what would be the first of many surgeries. At that point we decided it would be a good idea to write a living will. Just in case. So we did. We met with the then people we wanted to be her guardians in the off chance something would happen to us, designated how our things would be dispersed, and got our affairs in order. Talk about weird.


The surgery went along fine, life was good, and shit hit the fan with our (now) former friends. We picked up the pieces, moved on, and found new guardians for Chloe. And life was in order yet again. Or so we thought.

One thing you cannot count on is other people to remain the same. I always have great hopes for the people in my life. I want them to be happy, successful, healthy, and never to be without... Unfortunately, it doesn't always happen. Sometimes people aren't who we think they are and we need to change our responses to them accordingly. Which can mean major changes within your own little bubble. In our case that meant yet another change in guardianship for Chloe...


Chloe calls her guardians her 'god parents'. I think it's sweet personally. Now imagine that you are a child. You love your 'god parents'. Now rip them away. Twice. It's not an easy decision for a parent to make. Well, the first time it was. Certainly not the second go around. One thing remains consistent though- the contents of the will. Since I have a minor child I have the option to write a letter, or letters to her, to be opened on specific days, or whenever... I've started my letter several times. But what do you say? What do you advise? There aren't any rules or an outline. No list of ideas or suggestions. And now that I am getting closer to my journey into the unknown the letter to my daughter seems even more crucial than before. 



If you spoke from your heart what would you say to your children?


My Dearest Chloe,


I've never been at a loss for words. But somehow the thought of leaving you has left me just that. I've always been good at telling stories, so I think that I will tell you your story. To me, it was, and is, the best story ever written.


You see Chloe, I met a man that couldn't have been any more my opposite if I tried. So he was the perfect compliment to me. He had green hair, blue shirt, blue pants, blue converse, and a blue hat. And he played the guitar. I was hooked. It didn't take long for us to get married. We traveled some, enjoyed each others company, but really felt like having a child would be the most amazing thing we could do.



Chloe... I should have taken it as a sign of things to come... It took us 3 years before we found out we were finally having a baby. To this day you love to keep me waiting. But that's another part of your story my dear.



Being pregnant was the weirdest thing in the world for me. I didn't know you. Yet you survived only if I allowed it. Such a surreal way to exist. I'd like to think I did my best while I was pregnant, but I fear that there are things I could've avoided. What if I were in a better mood while I was pregnant? Would you be happier as a result? If I had less stress would you have been more adaptable to change? I will never know the answers to many things about that time. I can only hope that you know that I was scared, excited, anxious, thrilled, confused, overjoyed... well, I ran the gamut of emotions, but one thing was certain- my universe revolved around this beautiful little stranger and nothing in this world could ever mean more to me than you.


When I was at the end of my pregnancy you decided to show us your sense of humor. How does a baby still in the womb do that you ask? Well Chloe, you'd press yourself up against my stomach in such a manner that you looked like you were shaped like a giant Lima bean. And that's why we still call you Bean all these years later. There were a lot of "Is the Jolly Green Giant really the father?" jokes floating around too... Yes, it was early on that you and I were a tag team comedy act.



After you were born I didn't have a clue what to do with you. So tiny at 8 pounds 12 ounces. Now your existence was external to my own. And I felt it. I loved to hold on to you and sing. I loved to hold on to you and dance. I loved to hold on to you and put ridiculous things on your head and giggle. I loved to hold on to you. My amazing, beautiful, intense Lima bean.

You were definitely an old soul. You were quite serious. You took your time with everything- except growing teeth. Good lord child. You popped those suckers out 4 at a time! We were the envy of all parents.  Chloe, I'm glad you did things on your own time, and I'm glad we didn't fall victim to the suggestions of others that went against our own ideas. Everyone has an opinion on how to raise a child, even if they don't have any children. You'll find out when you have kids. I promise.


I know that you've always wanted a brother or sister. I always say that I cannot imagine loving another child as much as I love you. And that's the honest truth. I don't want to take away the attention that I can give to you. I don't want to take away from the time, the opportunities that we have without interruption, and I'm selfish. I don't want to share you!


Chloe do I tell you about the future? The past? The amazing and brilliant person that you are? Do I apologize profusely for the mistakes I made while raising you? Do I beg for forgiveness because I always said I'd spend more time with you and didn't, then I got sick and couldn't? Do I compliment you on every little thing you've ever done? Do I tell you what my hope and dreams for you are? I wish I could tell you the future, I have told you stories, I cannot tell you enough how incredible you are to me, I do not regret the mistakes I made, but rather I thank you for the opportunity to grow and become a better parent, I do ask you to forgive because I wish I spent more time with you, I'm sorry. My hopes and dreams for you are simple- follow your heart, fill your head, trust your gut, and be happy.


Chloe, you've filled my heart beyond bursting, you've filled my head with treasures, memories, and amazing insights I've not known were possible! I trust that I've done my very best in showing you what I feel is a good way to be, and the happiness you've brought me is unsurpassed.


I love you Chloe and I am insanely proud of you! Your wit, humor, intelligence... from the freckle on your palm to your heart shaped nostrils... the top of your head to the soles of your feet- thank you Chloe for the amazing gift you've given me.



I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be :)




Love Always, Mom